Cluster headaches
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The response to this website has been so fantastic, I've had to seperate some of the messages. There were so many wonderful posts from suffers around the world, that it was taking entirely too long for the page to load.

Below are the guestbook entries from January-December 2005. Thank you for your continued active involvement in this site and keep those guestbook entries coming!

 

 

Click Here to go back to the Main Guestbook

An ENT doctor performed a septoplasty on my nose to aleviate what he misdiagnosed as a sinus and breathing issue. It's funny that I had to have an $8,000 surgery before jumping on the internet and finding this site and diagnosing myself. That was 3 years ago... another round just started and I believe I'm allergic to Imitrex, but I'd rather have hives than a headache so I haven't told my Doctor yet. I think I'm going to look into oxygen....
Brad Philan <bphilan@telesmart.com>
Eugene, OR USA
Wednesday, December 28, 2005 at 18:14:31 (EST)

Well were do i start? I just got back from my first 2am ER visit and I was told that I have all the makings of a Cluster Head... Whew great news becouse i tought i had a tumer or cancer. So my friendly er doc says look it up on the internet so here i am. Now what he faild to tell me was that this gets worse and i will probibly have to deal with it the rest of my life (buy the way kip scale only a 7 maybe 8 but like i said cancer?) So it looks like you all have a new friend in need... Glad to meet you all...
Todd Fallquist <tfallquist@hotmail.com>
Oak Harbor, WA USA
Wednesday, December 28, 2005 at 07:06:35 (EST)

have been suffering for almost 16 yrs. thought my docs were just making something up for a long time to make me feel better, lived in a small town when i was a teen. just wish i could find away to help me deal with the blinding pain, any suggestions please let me know
niki <nikilynn_98320@yahoo.com>
Lynnwood, wa USA
Wednesday, December 28, 2005 at 04:20:12 (EST)

It s been FOUR years since I had a cluster session. I consider myself blessed because they used to come once a year like clock work for 6 to 8 weeks for more than 25 years. I m wondering if the feeling I am having right now will blossom into a full blown head ache or will it just (hopefully) be a teaser . It s amazing that for the past 4 years I never gave the headaches another thought. I didn t want to for fear that even thinking about them would put me back in season . But, they have returned, my deepest fears fulfilled. I am waiting to hear from my doctor so I can beg him for a 2 week prescription of lithium BEFORE I have my office visit which is scheduled for 3 weeks from now. Keep your fingers crossed for me. I always wanted to be part of an elite and exclusive group, something I could be proud of, my family could be proud of, but, with all due respect to my fellow sufferers, this is NOT the group I had in mind.
Rick Lelchuk
Miami, FL USA
Tuesday, December 27, 2005 at 14:05:29 (EST)

I will be 53 in February and have had clusters for 20 years my first being on a date with my x wife in Lake Tahoe. It has taken this long to find anyone else who suffers with this. I am taking too many meds and the doctors can never help me. Its been 4 years since my last episode and a part of me wanted to think I would never have one again. But deep down I knew they were inside waiting like clockwork waiting for the time to come around again. God Bless all of you who suffer and I hope someday we will have relief.
rick stautz <rickstautz@sbcglobal.net>
felton, ca USA
Monday, December 26, 2005 at 15:50:10 (EST)

Hello and thanks for this site and everyone's messages. I'm in the middle of my 3rd cycle of hell. This time I knew that something worse then a migraine was happening. I went to the ER 3 times this past week and a half. Finally the 3rd ER doctor did some research and diagnosed me with CH. That's when I started to research CH on the internet and came across this site. I was able to relate to many of the comments and letters. What a relief! Knowing your out there somehow makes it a little better. Thanks again for the support and wealth of information.
Jeff <jefferyc@centurytel.net>
Columbia, MO USA
Monday, December 26, 2005 at 10:08:37 (EST)

Wow-all of this makes me want to cry. I never realized there was so many of us suffering with this demon. If I could go back in time I would have lived so differently, this monster I have dealt with for over 24 years has made me appreciate a free day. I am going into my 14th week of craziness and about ready to pack it in, tired, weak, depressed, druged up and no where to hide. God Bless or at least help all of you.
Lori Reed <lori@miwoodproducts.com>
Hallsville, MO USA
Thursday, December 22, 2005 at 21:44:48 (EST)

I am an 18 year old female suffering from this cluster Headache illness. It starts as soon as I awake in the morning. Whenever I get the chance to sleep and it never goes away. I awake with this headache and goes to sleep with a headache. I had been living with these headaches for about 1 1/2 week before I had actually went to see an doctor. One Night I didn't get any sleep because I was waken by the pain upon my head Upon seeing the doctor he had told me I was diagnosed with sinus. The doctor had given me Zytec to hopefully cure the headaches but they had only gotten worse. That same night I had tried to go sleep but I couldn't and the pain was unbearable and painful. I was rushed to the hospital in the middle of the night hoping the emergency room could help me out. They took an Cat sceen but they couldn't fing anything wrong. After doing several test they soon made me aware that I was suffering from cluster Headaches. I had never heard of these types of headaches and was curious so I started to read information on the internet. The emergency room gave me a prescription for a prescription drug called Butalbital and it truly works. This medication is priscribed for headaches. If these drugs stops working, I do not know what I will do considering that I attend a college in SC. I hope this illness does not interfere with my education. If there is anyone out there that can help me out I am begging for their help. Thanks
Cara Mitchell <msmitchell18@yahoo.com>
Brooklyn, NY USA
Wednesday, December 21, 2005 at 15:29:04 (EST)

I am an 18 year old female suffering from this cluster Headache illness. It starts as soon as I awake in the morning. whenever I get the chance to sleep and it never goes away. I had been living with these headaches for about 1 week before I had actually went to see an doctor. One Night I didn't get any sleep because I was waken by the pain upon my head Upon seeing the doctor he had told me I was diagnosed with sinus. The doctor had given me Zytec to hopefully cure the headaches but they had only gotten worse. That same night I had tried to go sleep but I couldn't and the pain was unbearable and painful. I was rushed to the hospital in the middle of the night hoping the emergency room could help me out. They took an Cat sceen but they couldn't fing anything wrong. After doing several test they soon made me aware that I was suffering from cluster Headaches. I had never heard of these types of headaches and was curious so I started to read information on the internet. The emergency room gave me a prescription for a prescription drug called Butalbital and it truly works. This medication is priscribed for headaches. If these drugs stops working, I do not know what I will do considering that I attend a college in SC. I hope this illness does not interfere with my education. If there is anyone out there that can help me out I am begging for their help. Thanks
Cara Mitchell <msmitchell18@yahoo.com>
Brooklyn, NY USA
Wednesday, December 21, 2005 at 15:27:33 (EST)

I am an 18 year old female suffering from this cluster Headache illness. It starts as soon as awake in the morning whenever I get the chance to sleep and it never goes away. I had been living with these headaches for about 1 week before I had actually went to see an doctor. One Night I didn't get any sleep because I was waken by the pain upon my head Upon seeing the doctor he had told me I was diagnosed with sinus. The doctor had given me Zytec to hopefully cure the headaches but they had only gotten worse. That same night I had tried to go sleep but I couldn't and the pain was unbearable and painful. I was rushed to the hospital in the middle of the night hoping the emergency room could help me out. They took an Cat sceen but they couldn't fing anything wrong. After doing several test they soon made me aware that I was suffering from cluster Headaches. I had never heard of these types of headaches and was curious so I started to read information on the internet. The emergency room gave me a prescription for a prescription drug called Butalbital and it truly works. This medication is priscribed for headaches. If these drugs stops working, I do not know what I will do considering that I attend a college in SC. I hope this illness does not interfere with my education. If there is anyone out there that can help me out I am begging for their help. Thanks
Cara Mitchell <msmitchell18@yahoo.com>
Brooklyn, NY USA
Wednesday, December 21, 2005 at 15:26:43 (EST)

Hi Folks... Great to find you... A guardian Angel led me here. I have had trigeminal neuralgia since severe face trama in 1972. I have had clusters for the last 5 years... Why me Lord ? Ha... I'm getting thru it w/help.
Steve Sullivan <stevesrecluse@gorge.net>
N. Bonneville, WA USA
Tuesday, December 20, 2005 at 02:49:57 (EST)

New cycle of attacks started after 15 years in remission! I thought I could start drinking Red Wine again, but Nooo! This is the only trigger, formerly used Medihaler Ergotamine, no longer avail in the US, for >70% effectiveness, biggest pbm was not exceeding max. dosage given 2 attacks a day for 3 - 4 wks per cycle. This time its a lot milder than before. I can actually just bear the pain! But worried that it may reach full intensity again.
Richard Lo <richard.lo@tmng.com>
Oak Park, IL USA
Monday, December 19, 2005 at 10:52:09 (EST)

Greetings. 54 YO male just completing 2 day hospitilized DHE treatment and I feel almost euphoric at the effectiveness of this tx. This is the second time I've had this treatment (first being 5 years agao). Recomend discussion with your treating. It has given me my life back after 30 years of clusters. correspond if you'd like more info. I'm not frequent on this email address, but I will reply. Good luck
Tim Gallagher <tgallagher@indy.rr.com>
Carmel, IN USA
Sunday, December 18, 2005 at 05:26:28 (EST)

My husband is having good results with oxygen. It is the least expensive of all treatments he has attempted($25 per month, $5 per tank). People should be aware of how inexpensive and easily attainable it is.
Karen Travers <travers_karen@yahoo.com>
Parma, Oh USA
Saturday, December 17, 2005 at 18:08:13 (EST)

Hey everyone. Come inside and introduce yourselves on the MB. That is where info, support, tears and laughter are exchanged. Don't just lurk. Don't just post as a guest and expect replies. Join the family and take back your life! 2 E
Eric
commack, NY USA
Friday, December 16, 2005 at 17:51:37 (EST)

hi, i'm teresa. this is my 3rd week of this bout. i need to know how to get the imitrex i need. i take 100mg pills and my ins. will only pay for 9 a month.
teresa hagaman <bobmar2@mtco.com>
peoria, il USA
Friday, December 16, 2005 at 10:06:26 (EST)

Over 2 years without a clusterheadache, but now they are back! I am now getting them everyday and twice a day. I can not take this anymore. I have tried everything possible and nothing works.
Dee <meatballdlc@yahoo.com>
Belmont, MA USA
Thursday, December 15, 2005 at 21:09:17 (EST)

I'm 48 and until I started gettin CH's (4 or 5 yrs ago) I never had any major medical conditions of any kind. These "headaches" scared the HELL out of me. This board has helped me cope with them, and educates and entertains at the same time. Thanks to all.
Steve Boyette <imnotbub@yahoo.com>
Galloway, NJ USA
Wednesday, December 14, 2005 at 15:49:04 (EST)

I am a 5-year sufferer of CH. Doc #1 told me my headaches were viral. Doc #2 diagnosed my headaches as migranes. Out of pure luck and some web surfing I stumbled upon CH.com. I met with a Neurologist and he agree with my self-diagnosis and is treating me for what it is.. Cluster Headaches. I am so incredibly thankful that someone is treating my hell who understands the torture and is taking a proactive approach.
Terry
IN USA
Wednesday, December 14, 2005 at 13:04:28 (EST)

I have been a cluster headache sufferer/survivor for over 13 years now. I am currently 35 and I get them 1-2 times a year exactly the same months. This year my attack started late. Although not as "intense" as the past I still am in tremendous pain. Tried all sorts of different drugs. Even mixing certain ones with Vikadin, only out of desperation. Nothing. I still have yet to try oxeygen. The last "quack" family physician I had would not give me a script for the oxygen. She said it could be dangerous and I could OD on it. Please!!!! Also she would not send me a refferal at the time to go to a special headache clininc at the UofM. Because she wnated to try treating me herself. I currently am without insurance and currently trying to get through this bout with what I have left on hand from last year. Three more months to go and I will have my insurance again! Thank God!!! My advise get yourself a Dr that has had some experience or even previous patients with these "monster" headaches. Seems Drs these days want to "try" and treat you themselves and they have no clue what to do with people like us and the pain we are in. Best wishes to all my fellow sufferes out htere for a Very Merry Christmas and a Headache FREE New Year!!!!
Jill Greener <Crazymom2three@Wowway.com>
Northville Twp, MI USA
Tuesday, December 13, 2005 at 13:25:59 (EST)

boy oh boy.am i glad i have found this site ,no need to suffer these debilitating headaches alone. (unless you have had a cluster migrine you have no idea how painful they are)now i can compare notes with fellow cluster heads. great site!
james hollingsworth <bearlover267@yahoo.com>
cornwall, ont canada
Tuesday, December 13, 2005 at 07:57:00 (EST)

Merry Crhistmas to all. I have has CH for 17 yrs and have just gotten over a cycle but am not recovered. I took prednisone for the longest ever. But now for the begining. It started in summer 1988 and I had no idea what it wa Neither did my Dr.I was put thru dental work, sinus washes more dental, 30 drugs & after 9 mnths a diagnosos of CH. This began at age 33. I was at that time a private pilote and had just begun advanced training. (end that) I have since been hospitalized once for DHE shots that worked well, but the CH returned when I got home. I do not mean to sound negative as DHE is one thing that I found will stop my attacks immediatlly. Also O2 and Stadaol are the next most helpful things for me. I have often thought if there were'nt any drugs, how would I survive it. With help from the good Lord I guess I would or maybe I would'nd. The best of luck to you all and may GOD BLESS YOU. I
Don Stierle <dstierle@myway.com>
ypsilanti, Mi USA
Tuesday, December 13, 2005 at 00:34:33 (EST)

This site is great
Emma Jenny Taylor
Milton Keynes, Bucks UK
Monday, December 12, 2005 at 15:33:38 (EST)

Very nice to see a site full of people like me.In my entire family and my wifes Iam the only one who suffers from this. I tend to hide when it happens and they think Iam crazy. Dont know what to say, Just thanks for being here. I have suffered since I was 16, was pain free before. At times this 19 year fight seems hopeless as everyone thinks Iam concieted or rude. I dont thin Iam as bad off as some hit 10 on the kip scale only 5 or 6 times , normally Iam at 8. Take care and thanks!
Robert Ingram <Robertingram1970@hotmail>
Chicago, IL USA
Sunday, December 11, 2005 at 17:36:59 (EST)

I think we all agree that "cluster headaches" is a misnomer that has caused considerable harm. It seems to incite others to tell us about their latest headache and how three aspirin took it away. I think we must make noise about this issue. We need to jointly decide what words best describe this horrible affliction and then (I volunteer) write the AMA and other such types telling them we want a change in nomenclature. A good press release (I volunteer for that, too) would go out at the outset. What are your thoughts? What words might best describe the affliction? Are you willing to help in any way? If nothing else, we are guaranteed a bit of media attention if we make this unusual brand of noise.
Barbara <BYoung@xorbit.com>
USA
Sunday, December 11, 2005 at 12:53:13 (EST)

Interesting site.I have suffered from CH Since the age of 16 now 45! episodic every 12 to 24 months for 4 to 6 weeks without fail in the fall? Took my doctor 10 years to diagnose me after loads of drugs wisdom teeth removed you name it. I now use imigran injections, oxygen which helps the mild ones! and just had intravenous steriods which helped last time but this time they appear to be not helping.Imigran injections are the best thing i have had but only 2 in 24 hours thats not good if i get 8 a day or night.Normally to scared to go to sleep so end up shattered as i am now. Feel sorry for my wife who just cant help and it keeps her awake every night me rocking on the end of the bed! Even now i have to fight for injections and oxygen my doc will prescribe me 2 injections hes having a laugh! thats only one bloody day! wonder if he had them what he might prescribe to himself? Still he has come round over the years as I bombarded him with CH information he may have read it who knows. Best wishes to all and i am sorry you even know about this site! People often say to me whats the matter i say i get CH they say oh yeah i get migrains why dont you try some pain killers they dont even brush the side of a CH attack.I know over the last few years the understanding has got better but it need to be documented you see all these reality TV programmes let get the cameras on a CH sufferef for 48 hours to see them in the pain 4 to 5 times a night then physically drained for the rest of the day only knowing that they will be back tonight!Good luck
Kieron Macdonald <oxfordgarage@btconnect.com>
Darlington, England
Wednesday, December 07, 2005 at 05:37:10 (EST)

Got a question and I don't know where to ask it so I guess I will ask it here. I clicked on the Ask Doc Greg but nothing happened. I have been a headache sufferer for alot of years.I amma 55 year old male. I think there have been times that I have had cluster headaches but they haven't been prolonged. Within the last week or so I have develpoed what I think are some strange symptoms. I know the symptoms of Cluster headaches, however my symptoms are not typical. It was occurring around the same time every day until a few days ago and now they come and go during the day. I experience left eye droop, redness and a little bit of tearing but not much. My eay seems heavy. I have pain on the same side of my head but not typically in the temporsal area but higher up with some neck pain and ocaacsiona;l radiating pain to my ear.The pain is not at all excruciating. My question is can a cluster sufferer had mild discomfort or is it always to the point where you want to bang your head against the wall. Am I in for it meaning is this going to get worse. I saw an opthomologist and I had a negative exam which means he saw nothing wrong with my eye. I have an appointment with a neurologist today. Has anybody ever thought they had a cluster suyndrome to find out they have a tumoe or anuerysm. Anyway any insight would be appreciated. If whoever runs this site can paste this mail to DocGreg I wouls also appreciate it. Bye for now.
Burt Diamond <cardogman1@aol.com>
Rockville Centre, NY USA
Monday, December 05, 2005 at 10:30:39 (EST)

I appreciate all the helpful info on here. I have had clusters for about 10 years now. Always have them, maybe a 2 days break now and then. I am going to try and try a final attempt to relieve them with some of the medications listed on here and see if something works. I can't stand having them. My family is a great support help for me, when i am having an attack and am not "quite myself", they just help me in anyway and I know it's hard for them watching my face swell, eyes water, cold sweat, dizziness and talk of shooting myself to relieve the pain(NEVER would hurt myself in anyway just comes out). Thank you and everyone who has contributed to this very informative site....Alyce Garner
Alyce <alycegarner@yahoo.com>
Alto, TX USA
Friday, December 02, 2005 at 03:02:28 (EST)

I have been suffering from these clusters since I was 18, so practially 12 years. I feel the pain of all of you who get them and I know some of you get them far worse than I do. I'm fortunate that I have been able to deal with them when the onset occurs with either a triptan drug or meditation. Also try Cranial Sacral Therapy. It worked for me and through a phase, one treatment elimintated my clusters for a week straight. If I got the treatment on a regular basis, it might have eliminated them fully for that particular phase. This will have to be done during each phase and for me that is usually attacks for 2 months everyday, twice a day. I usually get one phase a year. I'm not big on the triptan drugs, but that's what I use at work since my headaches usually come during the day. In a peak of a attack, all I can do it think positive and think of the end of attack which is like winning a game. I usually pass out because of fighting it. It's hard to explain this pain to migraine sufferers because the cluster pain is far worse. I know it is hard to think positive, but you got to do something because there is no cure and not enough research done on this kind of pain. My nuerologist said until a celebrity or somebody with some kind of wealth gets these headaches and puts money towards research, we're sort of screwed in the research department. Chad
Chad Fehr <cyfehr@enter.net>
Emmaus, PA USA
Thursday, December 01, 2005 at 08:27:40 (EST)

I finally found out what it is that has been going on inside my head for the past few years. I just put up with the pain and everyone told me that it was terrible that I got these "headaches" but to just take some aspirin when they come on and forget about it. Everyone told me this until my fiancee saw me have one, then a few hours later another and another until she got worried that there was something really wrong. She saw the whole thing day in and day out charted what was going on saw me cry, hit the floor, pace around, try and hypervenolate myself, blow my nose and all the other things I am so used to. After a few nights of these going on she was exhausted and basically she said dont wake her anymore. I told her that I fully understand and that she had only saw me with pain levels at 1/2-3/4 of what they have been in the past and she could not believe it. I am starting another cycle and if the past is any basis to go by I think this cycle could and hopefully will be more mild even still they are back. I just am so appreciative that there is a site like this that we can go to vent and hopefully together find a cure for this. I have told many of people that I would "NOT WISH THESE ON MY WORST ENEMY" and we really need to come up with some other name than headache. Headache ha I laugh in the face of a headache and even a migrane gets a chuckle out of me these are no headache its a headmostpiercingthingever ache. I am going back to bed hopefully I wont be back on here again tonight. Thanks and God bless.
Luke Gordy <mrluke1978@charter.net>
farmington, mn USA
Thursday, December 01, 2005 at 01:05:59 (EST)

Hi all, although i do not suffer with clusters physically i do mentally. As my husband has suffered these since before we were an item. I can't begin to imagine what he must be going through not being a sufferer myself, all i can do is sit and watch him, feeling helpless as there is nothing i can do to help him. Yeah i can make him a hot water bottle or hug him, sit with him if he awakes me which he rarely does.I have mainly registered to this site to see if i can get more of an understanding of it and see if there is more ican do to help my husband.
Mrs Delts <agent_orange65@hotmail.com>
Hastings, GB
Wednesday, November 30, 2005 at 15:46:29 (EST)

I've been suffereing from CH since my mid 20's, now I'm 35. I just learned what the term 'Cluster Headache' less than 2 yrs ago. I usually get them twice a year during and around the Solstice's and they last 6 weeks or so. I was im remission for about a year (got married, had a baby) now they are back. I think it is stress related, not sure.
Sam Masterson <sam.masterson@gmail.com>
Shelton, CT USA
Wednesday, November 30, 2005 at 11:45:40 (EST)

it is wonderful to find this site ....i knew i had clusters for years but had been in remission...don't know why.....but the hurt is back and almost drove me to the hospital...but that is pointless...yesterday i blew my top at work with a co-worker who chose that momment to argue....i have prayed to the man to help me as well...today is pain level 10 but i only have a few weeks to go and i will return to my charmed life....now i know where to go at 2 am ........bless you all...may u have relief
don <bigsing@comcast.net>
tacoma, wa USA
Wednesday, November 30, 2005 at 02:05:42 (EST)

Well here i sit it is 3 30am and anothe rasskicker has just left me, been suffering for 28 years, ona n episodic level thankfully, every 18 months for 6 to 8 weeks, my life is a living hell, this cycle has now peaked ( i think) as i had my major attack three days ago which lasted for three and a half days, now the attacks are 24 hours apart but just as nasty , hopefully they will now spread out and finally clear before xmas. My treatments have been varied and plentiful, ranging from micking my mums solpadiene when i was 11 to pethidine up to a few years ago,luckily my Doc is pretty understanding with CH and is open minded enough to try other options, i am currently having the best results ever with a combination of Imigran Aqueous Inhalers they are Sumatriptan in a one shot dispenser which you snort straight up the nostril of the CH in my case the left, it takes approx 10 to 15 mins to work and stops the lesser atttack straightr, i also couple this with oxygen for the bad boys and this too is effective. The great thing about these inhalers is that they do not have to be processed via the stomach to enter the blood stream they just permeate throught the nasal membrane reducing the time it takes to to get to work. I hope this helps someone out there because i know what you are going through especially those poor souls who suffer this 24 /7 365. I have suffered with CH since i was 11 i am now 39 and i can say that the the periods of remission are now showing signs of lengthening as i get older,maybe one day i will be free , fingers crossed, Bill
bill <tiny66@hotmail.com>
hastings, GB
Tuesday, November 29, 2005 at 22:41:24 (EST)

Hi Ya, as u can see i live in new zealand and have suffered pain that no words can discribe, being told it depression, sinus, migrains, real laugh over here. I have a very long story and will tell u all when i join up. Thanks All Your site is answered so much
Amy Barras <aimsforeva@hotmail.com>
Normanby, New Zealand
Tuesday, November 29, 2005 at 03:11:39 (EST)

Just found your informative and encouraging site! I am 54, male, and have had headaches for years that were misdiagnosed as being due to misalignment of cervical spine from too many severe car wrecks. Only put it all together about a year ago after a particularly severe episode and after finding so much intformation on the i-net. Last interim period lasted about a year - and current episode was recently triggered by nitrates given in response to clogged coronary artery. Thankfully after 6 weeks now it seems to be on the wane. It only took one table of ImDur to start the cycle. I am a retired Lt. from the WIchita Police Department and in addition to the car wrecks I assumed that my muscular-skeletal system was a mess due to walking 'out of balance' with a gun belt and sitting in those cheap patrol car seats for 20 years. No doubt none of that did me any good. I look forward to learning a lot at this site! thanx, arlyn
Arlyn Smith <arlynsmith@cox.net>
Wichita, KS USA
Sunday, November 27, 2005 at 23:13:03 (EST)

Hi, My husband is a CH sufferer and has been one for almost 10 years. I've known him for 5 of those years and we've been married for a little over 2 years. I knew what I was getting myself into when I married him and although it feels like we're both going through hell (his much worse than mine, of course) when he's having a cycle, I wouldn't give him up for anything in the world. I know that I was put on this earth to help him get through this and I know how much he cherishes the fact that I'm there for him no matter what. He's my hero...I can't imagine going through what he's going through every time he has a CH...whether it's a 3 or a 10 on the pain scale. Somehow he always manages to crack a joke or give me a "wink"...w/his good eye at the time. I love him. I'm so thankful that I found this site and that there are people out there who KNOW what we're going through...thank you.
Virginia <vrey@paradigmprop.com>
ma USA
Sunday, November 27, 2005 at 19:24:35 (EST)

Hey there, I'm new to the world of Clusterheaders. If any of you out there live close by, I'd love to visit with you.
Tanya <alje@bresnan.net>
Sheridan, Wy USA
Friday, November 25, 2005 at 23:02:24 (EST)

Well, I'm 31 year man from Norway, who by my own studie throug internet found "my" own diagnosies. I had migraine at first, the cause of this I don't know, but it could have been when I as a 8 or 9 year old smashed my head into parked truck. I was unconsiuos for I don't know how long, but for some time. This started my "migraine" as a child, this lasted till I was 15-16. It came back as "cluster lite", or some sort, in my late 20 and got worse as closer I got 30. My symptoms are as follows. Droppy eyelid on the left, redness of the left eye, tingeling sensation in my left side of body. Feeling electric zaps through my left side of body down to my heels and out to my left big toe. It starts of with pain in my left shoulder and neck, which sends zaps of pain up to my left eye and nostril. In some episodes I touch my left eyelid and stretches out my right arm upwards. In some attacks(those really painful ones) I can't walk up stairs, and can only walk backwards. I staggers around, I talk funny, like I was drunk or something. Seeing strange lights, spots fly around, really funny stuff( thinking back) happens. Must be awful to witness, but for me it's just pain, pain and pain. I've been almost painfree for nearly 9 months now, just rarely I get attacks. Before I had attacks 4-5 times a week, and several times a day. I had this for 4 or 5 years until feb. this year. I started with meds like " Imigran" and a pill I can't remember the name of. To be free of this(not totally but as close as one can get), It's heavenly, better than sex. Much, much better:). I wish for the same, for every one who suffer from this sh.t. Best wishes from Norway:)
Hans-Erik <qgong@start.no>
Oslo, Norway
Thursday, November 24, 2005 at 19:46:36 (EST)

Haven't posted in a while but had a REAL bad night last night so i seeked refuge and always end here..just passed my 9th year of CH suffering...24/7..365 days for every year...stick in there folks. Gary
Gary Macleod <macspot@tiscali.co.uk>
Tongue, SCOTLAND
Monday, November 21, 2005 at 09:43:28 (EST)

I know of two people who have stopped taking WHITE SUGAR with their coffee and other beverages. Their headaches disappeared. Try it, and please, let me know if it also works for you.
G Rodriguez <g_rodriguezp@hotmail.com>
Montreal, Qu CANADA
Saturday, November 19, 2005 at 13:04:55 (EST)

Hi my name is Joneeka, I really don't think I would of known anything about the cluster headaches until one day someone I care about was going through so much pain.It made me want to really do research on this beause it just didn't sound so good so eventually I got the website and saw so many stroies and people,dealing with an illness that know one really know's about,so I only thinks it's right that people from all diffrent ages and races get together and support people that suffers from cluster headaches,and other illnesses. god bless to all, joneeka mitchell (suppoter)
joneeka <the_poetic_fantasizer_88@yahoo.com>
Bothell, Wa USA
Friday, November 18, 2005 at 19:33:53 (EST)

Hi all!!I am the wife of a cluster headache sufferer. He was diagnosed 2 years ago in the summer right before we were married. This week they came back almost out of nowhere. This time around he seems to be more desperate, he cannot tolerate the pain and uses his Imitrex shot more than the recommended 2 times in 24 hrs because its the only ting that seems to work. He used depakote and it seemed to bring them on more often anyone have that experience? It seems like he's a guinea pig right now he's gone to 3 nuerologists had a MRI and nothing. Does anyone suffer pain in their teeth? he does only when they come on, we're gonna see a specialists who knows maybe it's his teeth although I truly doubt it. As a wife I can't bear to see him in such pain I feel so helpless and desperate. they really need to find a cure for this horrible condition and fast! This site is great and has been an awesome help and it's been encouraging to know that there are others out there suffering the same as he. At 2 in the morning you think you're the only one suffering and you almost feel like you are gonna die you probably wish it too at that time. I can't wait till they go away I'm pregnant and the stress is unbearable. Thanks for letting me vent good luck to all and a speedy pain free recovery!
tammy <tchervoni@yahoo.com>
brooklyn, ny usa
Friday, November 18, 2005 at 15:42:29 (EST)

Hi Lyn from Oz Barry from W.A. here welcome to the nut house. I dont take any drug harder than a fruit tingle so I can't help out on the meds side of things, I go the o2. There are people on this site who can give you better guidance than me on the meds issue. Why not sign up to the site it costs nothing the Guy who runs this is an ANGEL and without a doudt these people are best source of info that I have been able to find and they really are a great bunch. Hope you get some relief soon and would love to see you come on line there are quite a few Aussies her so your not alone Kind Regards & PFD's Barry PS scuse the spellin
Barry T Coles <barry.coles@watercorporation.com.au>
Karratha, W.A. Australia
Thursday, November 17, 2005 at 21:07:07 (EST)

I have suffered from cluster headaches since 1977. I was 23 then, and could not understand what in the world was happening to me. After experiencing 9 weeks of hell and seeing several doctors it was explained to me that I was a cluster headache sufferer. Every three to four years ( primarily in the Autumn months) I go through a cycle which has lasted 4-to-10 weeks. I am in a cycle right now and it is just like all the others. One night I'll have a few minor attacks- then out of nowhere I'll get an attack which really doesn't go away for three days. It just varies in intensity for three straight days !!!I am exhausted and angry that I have been pegged with these darn things. Nobody ever understands because they just think I am experiencing a headache. Quite honestly I don't care what someone thinks, I just want the pain to leave as quickly as it comes. I am presently in week three, hope and pray they end soon. I cancelled going to a family members for Thanksgiving because of the fear of having an attack while at their house. Whenever I get an attack, I walk away from my wife and kids and tell them Dad needs to be alone. I really do want to be by myself and rub my head ----left eye---the whole while. I have to be standing with my arms against a dresser--pressing my head against my arms. Sometimes I dampen a towel and rub my left side of my head against the towel.No doctor has been able to explain these things and they do indeed appear sympathetic, as they have seen many acute sufferers. Good luck to everyone who gets clusters---may your cycles be brief and leave as quickly as they came..........Scott
Scott <zwibbs11@aol.com>
new rochelle, ny USA
Thursday, November 17, 2005 at 07:29:21 (EST)

Can you please send me some information of 'Cluster Headaches' and the possible cures. This site has given me some brilliant information and has helped me on my way in exams.
Holly Gee <hollgee92@hotmail.com>
Rhayader, UK Wales
Wednesday, November 16, 2005 at 09:16:55 (EST)

After a break of 2 years, they're back. Was started on Isoptin (verapamil) 2 days ago and yesterday was the worst day ever in the history of my CH. Coincidence? Who knows, but I won't be taking them again. Has anyone out there had the same experience with this medication? Pain began 0600 and apart from half an hour mid morning, was unrelenting until a cold southerly change blew in at 1900. Hot humid days seem to be the worst for me.
lyn whittall
Australia
Tuesday, November 15, 2005 at 19:43:06 (EST)

I'm new to this site. Looking for other suffers of clusters
Joan <jbreeser@acegroup.cc>
eitzen, mn USA
Monday, November 14, 2005 at 18:07:26 (EST)

Wow! Unbelievable. clusterheadaches.com tee shirts. Now I've seen everything. I'm 49 years old tomorrow. Been a victim for over 25 years. Last Sunday, I had my first "banger" in over three years. That's the longest interval for me. Thought I was over it. Three years ago, I was introduced to "Quantum Energetics". It's some out there, new agey kind of therapy for all kinds of ailments. I really thought I'd found the answer, but last Sunday proved my theory wrong. Although I'm not giving up on it (had three sessions this week). I've also tried Cranial Sacrum theapy, Accupuncture, Chiropractics, Reike, Oxygen, Lidocaine inhalents, Cafergot, Maxalt and countless others. Presently, I'm doing the Maxalt "or" Cafergot at onset - - NEVER BOTH TOGETHER! If I get no results, I take Dilaudid 4mg. to start. Today was a horrible day from 8:30am til about 3:00pm with 10mg. of Dilaudid, 4 Extra Strength Excedin, ice packs on my head and a bucket of scalding hot water for my feet. Yesterday I saw Dr. Zhao in Eureka, CA for Accupuncture, Shitasu massage and plenty of Chinese herbs for my heart, liver and back of left side of neck. I'm a mess. If you like see my extensive Cluster Headache jounal, just email me and I'll send it to you. It's a Microsoft Word document. Good luck to you all.... hang in there... Much sincere sympathy to you all.
John Angus <johnnya@mac.com>
Redway, CA USA
Monday, November 14, 2005 at 01:15:51 (EST)

This is my first time using this website(actually my first time I've looked for answers to some of my many questions). Ijust got diagnost with CH about 6 mos. ago,but I've been suffering for much longer!! First of all what do other people do when they are at work and have a headache??????? Also,how do you get your employer to really understand , besides a note from your neuroligist and some brief info. Does oxegen really work?? what else??If you have a minute, and have any GOOD advice i would GREATLY appreciate it Thank You!!!!!1
Christopher Drenner <drennerc@comcast.net>
mercersburg, PA USA
Sunday, November 13, 2005 at 18:33:36 (EST)

This site is great
Emma Jenny Taylor
Milton Keynes, Bucks UK
Sunday, November 13, 2005 at 09:43:44 (EST)

Thanks so much for this site. It's nice to know I'm not the only one suffering from this. I guess misery does love company LOL. To let you know, I lost eyesight in my right eye at 27 to an infection an begin with cluster headaches the following year. I thought they were migraines at first, but after seeing (no pun intended) how it was different, I now know I've got CHS. Yes, I know I smoke and drink too much, but at least they keep me sane LOL. I'm writing this now after having an attack of about a good 6.5 on the Kip Scale. Nothing seemed to help this time except a little bit of icy hot under my right nostril; my partner is helpless to aid me when I have the attacks. I can almost feel his helplessness in it all--well perhaps when the pain begins to subside. During the attack all I want to do is beat my fists against my head! Thanks for letting me vent--it's now 3 hours and I think I can finally go back to sleep. I pray another one doesn't wake me up. To you all, my thoughts and prayers and (just kidding) a good dose of heroin LOL ZC
Z Camardelle <meisterzauber@cox.net>
New Orleans, LA USA
Saturday, November 12, 2005 at 11:40:18 (EST)

Have you ever felt so absolutely helpless that it makes you want to just destroy everything around you? Even though it wouldn't help anything? My friend suffered Dragadonozorians (ddz's; ch's). His headaches were bad, very bad. Sometimes I would open the door to my friend's house to find him in a fetal position of the floor because there's no way to stop it, he would try anyways, pulling out hair, hitting things. He tried to express his anger and pain but there's no way to change the feeling at all. He told me many times that he wanted to gouge his left eye out, for that is where most of the pain comes from. They usually repeatedly occurred at night, around 20 minutes each set. However, he had insomnia and didn't sleep regular hours. I usually had to hold him and spoon him for hours on end until he calmed down. He told me he would start on hallucinogens again, but that would just make him more manic-depressive. He often felt suicidal, and having CH's just worsened it. He was afraid to sleep because if he woke up, he woke up screaming, crying, and shaken. He didn't like to sleep with clothes on for he found it even harder to fall asleep, but many a times have family members ran in on him in the middle of the night to find him screaming, crying, and naked, his limbs flailing about and his blankets in a frenzy. All these times, I never knew what to do. He told me CH's were worse than giving childbirth. When I had his first son, during labor, he'd yell at me, "MY HEADACHES ARE WORSE THAN THIS! YOU GET A TASTE OF HOW BAD IT IS YET? HUH? YOU BELIEVE ME YET? HUH?" I knew it was just the headaches speaking. I wish there was something I could've done, but all pharmaceuticals don't find the need to find cures for these because not many people suffer from them. We couldn't afford any of the expensive cures. I found him in his bed yesterday. He shot himself. In the same bed I would spoon him every night he had the headaches. In the same bed we conceived our son. I knew it was because of the headaches. I write this in hopes that people realize the seriousness of Dragadonozorians, otherwise known as cluster headaches.
Reno
Wayne, MA USA
Saturday, November 12, 2005 at 00:53:52 (EST)

Hi I am the wife of a new sufferer only diagnosed 2 weeks ago. This is a fantastic website didn't even dream that anything like this existed. Will try and get my husband Nigel to have a look on here. It was so distressing seeing him with this pain (even more distressing for him) He was admitted to hospital on 21/10/05 and discharged from hospital on 28/10/05 - we were told that the Drs had seen a few cases of this condition but they still didn't know what the cause was and to think his started with a cold on Monday 17/10 with a sneezing fit and just like a heavy cold. He told me he had a bad head from the tuesday and it progressively got worse on the Wednesday I had never known him ill before this. My heart goes out to all you sufferers out there and just reading the stories from people on here made me cry as seeing my husband when he was in pain. Hope you all have a peaceful relaxing pain-free night Caroline Steggles United Kingdom
Caroline Steggles <carolinesteggles@aol.com>
Oxfordshire, UK
Thursday, November 10, 2005 at 16:14:09 (EST)

Hello all Been head clear for nearly 5 years now, but now starting again..not looking forward to the pain,,using oxygen that helps a lot..good luck all..
Dennis Croteau <denniswinte35@hotmail.com>
campbell river, bc canada
Thursday, November 10, 2005 at 02:54:02 (EST)

Hello all Been head clear for nearly 5 years now but now starting again..not looking forward to the pain,,using oxegen that helps a lot..good luck all..
Dennis Croteau <denniswinte35@hotmail.com>
campbell river, bc canada
Thursday, November 10, 2005 at 02:52:35 (EST)

Me Again I've been a sufferer for 7 years. The past 2 years have been hell. I decided to try something new. I was tired of the doctors prescribing heart, Bi-Polar and all the pain killer medicines. I went the Chiropractic route. That was a month ago and I havn't had a CH since. I will soon try acupuncture along with this soon. Good luck to you all. Ciao Benjamin
Benjamin <bennystpete@yahoo.com>
St. Petersburg, FL USA
Wednesday, November 09, 2005 at 09:00:39 (EST)

Hi People, I cant beleive i've found so many other people suffering in the same way as I have! I dont just mean with the incredible pain but the lack of knowledge by Health Professionals. I have suffered from CH for 17 years and was finally diagnosed a month ago!I am amazed reading the other listings that the timings of the headaches others are suffering are the same as mine! I have had this bout since mid September. No sign of it letting up yet. I have tried Imagran injections & verapamill this time. I also have O2 but no mask( that's a whole other comedy sketch!!) I have just been prescribed Frovatriptan and the Imagran injections KO me for the rest of the day.I am at my wits end and feel like my life is passing me by. PLEASE let it end soon!! I wish sites like this one didn't have to exist but you are all a fantastic support. Hang on in there everyone.. we will all get there!
Alex. Fleming <dave_i_d@hotmail.com>
Falkirk, Scotland
Wednesday, November 09, 2005 at 06:46:47 (EST)

hello all,im new here and i live in n.georgia.i really enjoy this site.thanks.anyone mail me if you like,and maybe we can exchange info.see ya.john
john j <cw111moss@yahoo.com>
woodstock, ga USA
Tuesday, November 08, 2005 at 21:07:08 (EST)

I have suffered for 13 years. There is a new med to help....RELPAX! It is the only med proven more powerful than Imitrex and it stays in the system for 8 hours. I can now sleep a full night without "the monster" waking me. Relpax has truely changed my life. I take Relpax once or maybe twice at the beginning of a cycle while I also build up Verapamil. Once Verapamil is on board for 7-9 days I don't need Relpax anymore. This strategy has worked for me EVERY cycle for the past 2+ years and I feel like I have reclaimed my life and no longer fear my CH cycles. TRY IT!!! IT WORKS & IT IS A SAFE STRATEGY.
Tyson <tyson.m.godfrey@pfizer.com>
Anthem, AZ USA
Monday, November 07, 2005 at 22:53:50 (EST)

Hi all been having CH for 5 months now hope i am neer the end good to know i am not alone got great comfort from you guys
Andy Greenhalf <acgreenhalf@tiscali.co.uk>
Northants, U/K
Monday, November 07, 2005 at 16:22:22 (EST)

Hi Again, I had a post back in Oct. 2005. I had the headaches since middle August. They were to me like being on the Electric Chair and just wouldnt die. I finally got with a neurologist Nov. 1st. They gave me a month tapering dose of Prednisone 10 mg. tabs. Starting at 8 tabs. for 3 days redusing to 7 for 3 days and so on till 1/2 for 3 days and then off of them. Also Verapamil 80 mg. 3 times a day. And Depakote 500 mg. 2 times a day. Then they gave me Imitex shots for the severe pain. Since the Food and Drug Adminstration only allows 12 of these a month, because they can trigger heart problems and stroke. I knew it would never do for the 3 headhaches a day so they also gve me a Stadol Nose Spray which is a narcotic but safe if I alternate with the Imitrex shots on every other headache. Good news--- I didnt need either one so far. The preventitive type meds. (verapamil,Depakote,prednisone) simmered the bad headaches down to a dull type headache which I can handle. Maybe this wont work for everyone like it did me but Im hoping to help some. They want me to stay on the meds. till im headache free for a month then taper me off of them. They also say On the next bout to call on the very 1st headache and they will start the month taper of Prenisone. Alot of times it will simmer them down in a week or so. The big thing they told me is to catch them early before they inflame all the capilaries and nerve endings. And get into a cycle. Hope to helps some of you. If you have any ???s email me, be glad to try to answer what I can. Gary
Gary Shawver <shawgar1@evenlink.com>
Beavertown, Pa USA
Saturday, November 05, 2005 at 20:01:34 (EST)

Hello to all. Back again, exactly a year since my last post, and my last headache. I thought this was supposed to stop after 50....but my annual CH episode seems to have missed that all-important birthday. Has anyone ever had any experience with Imitrex injections that have passed their Expiration Date? Its all I had available last night (this morning?) and I wondered if there's a danger using one thats a couple years old.....although at 3:00 a.m., had it killed me, I might not have been any worse off...........
Gary Kirshenbaum <gary540i@rogers.com>
Thornhill, ON Canada
Saturday, November 05, 2005 at 07:05:22 (EST)

hi everyone, recently i have been to the doctors and they have told me that i am suffering with cluster headaches, i have had them continuosly for the last month and a half. as im only 18 and only just started getting these i would be glad of any information you could give me on your personal experences, and feel free to email me with them. my support is with all the people who have these as i know how painful it is. thankyou steven
Steven <S_dhinsa2004@hotmail.com>
exeter devon uk, uk
Friday, November 04, 2005 at 07:14:38 (EST)

This site is a Godsend...never knew the term 'cluster headache' until this morning's visit to the company PA. I hit on virtually every question on the quiz. I have been episodic for 20 years, two bouts per year, spring and fall, but I am in the midst of the worst so far, 1-3 per day, every day for two weeks. I actually had tears in my eyes reading your messages, knowing that you all knew the agony. I am at the 9 to 9.5 on the Kip scale...am going to try nasal Imitrex today. The only thing that I've used that helps manage the pain is a gel called Bio-Freeze, used for sore muscles. I spread it on my left eyebrow and forehead, and it cools the area without the pain of actually placing an ice pack on my head. Wishing you all a peaceful night, one night at a time...
Mike Wendorf <wendorf@wyoming.com>
Rock Springs, WY USA
Wednesday, November 02, 2005 at 15:43:10 (EST)

I've suffered for 2 years. At firstI thought it was a sinus thing, after mri/ex-ray & 5 doctors I got my answer. I've suffered maybe 200 attacks in 8 months. I hope someone will find the cure. I feel sorry for all who suffer. God be with us!!!! thanks, Clarence mrtman40@aol.com
Clarence Arnold <mtrman40@aol.com>
Freeman, Mo. USA
Wednesday, November 02, 2005 at 00:09:47 (EST)

Whoops...it wasnt the imitrex web site with the free coupon for 9 pills...though they do have some offers there that save money.....it was Novembers Reader Digest that did...their was also several articles on headaches...so all the drug companies had their ads there too
mike
ny USA
Tuesday, November 01, 2005 at 20:21:22 (EST)

I think we are all to beleive that it is our insurance companies are responsible for only approving 9 pills a month of imitrex. But in reading the fine print in those little information packets that you need a magnifying glass to read that drug companies supply with medication, the drug company doesnt want you to take more than 2 a week...which ends up being about 9 a month.Mmmm , why does the drug company package them in 9sss. Are we not sure that it may be the drug company and not the insurance/prescription plan that is responsible. I know its hard to understand why would a drug company not want us to use more and theirfore they make more money. It could be a liability thing. Dont know..just a thought..but i've learnt to stock up, also your neurologist should be willing to give free samples. Also once in a while there is a coupon for 10 dollars off in the box, give that to your pharmacist next time..save on your copay. On the imitrex web site,there is a coupon for 9 pills free. Ask your neurologist to give you a prescrition for just 9, take that to a different pharmacist that doesnt have your insurance info(and of course dont tell him you do) Hope this helps
mike <mikezav1@hotmail.com>
ny USA
Tuesday, November 01, 2005 at 20:16:11 (EST)

Hey all....I was at Barnes and Noble today trying to find some kind of miracle cure for my 'migraines' that had gone away for a while and all of the sudden have come full force[my prescription meds all of the sudden have stopped working again...]. I came across the term cluster headache and decided to research it on the web and here I am! My doctor never mentioned anything about CH but the more I have read tonight the more symptoms I recognize as my own. This website has been a tremendous help and hopefully will help narrow down the diagnosis of the pain I suffer through. I have lots of print outs and will be visiting my doctor this week. Thanks guys!
Lindsay <LynsyS2002@yahoo.com>
Hatboro, PA USA
Tuesday, November 01, 2005 at 19:36:42 (EST)

Hi, everybody! I'm so happy(?) to be the first Korean sufferer ever here. I'm 33 years and have been suffering from CH for 4years. Mine comes every 2years and this year is time to greet CH. I belive that we all can WIN against that horrible beast at last.
Jongwon Lee <happypemco@gmail.com>
Seoul, South Korea
Tuesday, November 01, 2005 at 04:17:59 (EST)

This site is great
Emma Jenny Taylor <Classicalmusicmad@yahoo.co.uk>
Milton Keynes, Bucks UK
Monday, October 31, 2005 at 14:54:08 (EST)

I'm about 4 weeks into this present cycle, 1st one in about 8 years!! I thought I was done with this Demon !! I Went 6 years once without a cycle and thought I was done them. I read somewhere that once you hit your 50's That they totaly diminish. I turned 53 this past August so naturaly after 8 years with no pain Of course I thought I was done.Imagine my suprise a few weeks ago when I first felt this demon biting into my right eye!! The thing that is different this time is the pain is constant with it escalating to a fever pitch while I'm sleeping. I take alot of Narcotic pain meds for a failed spinal Fusion so it really amazes me that this thing can sneak through all that. Through this cycle the only thing that has helped me is coffee!! As soon as I feel that 1st twinge of escalating pain I head straight for the coffe pot. Usually two cups of Black coffee and either two Advil or Aleve bring it back to where it's tolerable.My younger Brother (by 6 years} also has the Demon and he has been my only source of understanding as I am his.Right now he is about the same age as I was at the end of my six year remission, so naturaly when I told him about this cycle he freaked !!I have been at this since my early 20's maybe 21 the first time so it's been a long haul with no relief. I was in the Hospital when Imatrix first hit the market and it does absolutely nothing for me. The only thing that has worked over the years is Demerol but Try to find a Dr. willing to write a script for that , and now the are ceasing use of it in my local hospital cause they say it's mainly a drug to "get high" on rather than a pain reliver!!I used sansert for a few years back in the early to mid 80's and it seemed to shorten the cycles a bit but alot of Dr's today have never even heard of it.This evening was an important one as it was my sons Confirmation Dinner, However as I lay Napping around 4PM to rest my back I woke with that explosive pain in my forhead and my right eye so naturaly I missed it . Tomorrow is Confirmation Day and I hope being it's in the morning I can make it. That to me is the worst part of this demon, it affects not only me but my whole Family !! Any way I'm glad I found this site and I will pass it onto my Brother as well . If any one would like to speak one on one You can Reach me at Lastdaddy@AOL.COM Just put the word Cluster in the Subject line because I usually don't open mail from unknown people. I'm sure I'll be awake for awhile cause I'm at that point where I'm afraid to go to sleep!! Thanks for letting me vent!! Ralph
Ralph <Lastdaddy@AOL.COM>
Cairo, NY USA
Saturday, October 29, 2005 at 22:55:23 (EST)

Hi Guys, well it's clustertime again here in the Netherlands, eight weeks now and hope it will give me a break soon. Always come back on the heavy moments, to read and understand iám not the only one. So thanks, keep up the good work.
Wil Schmitz <w.schmitz@home.nl>
Enschede, OV Netherlands
Saturday, October 29, 2005 at 14:54:29 (EST)

Hello everyone, please come and join us on the boards. We can give you so much support and help and even (believe it or not) make you smile too! This condition is horrible, there's no need to face it alone. Stick around and let us help and we lighten the load for all of us. I'm looking forward to meeting you on the inside! Regards Helen (LeLimey)
Helen <lelimey@hotmail.co.uk>
Nottingham, England
Saturday, October 29, 2005 at 07:48:13 (EST)

I am looking for a friend of mine who may be on this board, as he suffers from cluster headaches. His name is Frank Weeden, and he has not been in touch with any of his many friends since he went to Cozumel, Mexico a few days before Hurricane Wilma passed over the island. Please, if you have heard from Frank recently, get in touch with me. mettahu@comcast.net Very worried about my friend. Frank has often mentioned how much the support of his cluster headache frends has meant to him. Thank you.
Linda LeBoutillier <mettahu@comcast.net>
Shoreview, MN USA
Thursday, October 27, 2005 at 17:24:44 (EST)

My big, strong, hard working husband of 16 years began complaining of headaches 5 weeks ago. It was unbearable to him, interfering with his job and our everyday life. I did not understand the severity of it until he came home from work in tears and begged to go to the ER. (This is a man who broke his back and waited a few hours to go the ER because he didn't think it was bad enough!)While I believed he was in pain, I still thought, "if you have a headache, you take an aspirin and go on about your day" Today a neurologist diagnosed him with cluster headaches and I found your website. Now I owe my husband a HUGE apology and lots of sympathy. Thank you, I am beginning to understand what is ahead of us.
Jenny Elkins <shanejenny1@yahoo.com>
Evansville, IN USA
Thursday, October 27, 2005 at 10:16:05 (EST)

Well it's 1:41am and I'm back. It's been 3 days and no CH. I guess it was wishful thinking that they were over. I knew deep down it was too soon. I've been taking predisone. Nearly through with it. Maybe it is helping. I did skip 3 days! I've taken 150 mg of demoral and I hope it kicks in soon.Thanks for all the prayers. Iknow they surely heip. Thanks B. Young for your e-mail. God Bless all you suffers!BC
Bill Coe <bslmcoe@cox-internet.com>
Winnsboro, Tx USA
Thursday, October 27, 2005 at 01:54:00 (EST)

I am now almost eight years clear of attacks after thirty one consecutive years of the Acute version of the Beast. Three to five months at 4 to 6 per day and I am very familiar with every symptom that contributors have listed on this site. (My wife, a trained nurse of vast experience, once found me naked in our bedroom wardrobe, curled into a fetal position with my police issue service revolver clutched firmly to my chest). Yep! I know the Beast, all too well. For my own reasons, purely resulting from my own research over many years, I determined to do two things; (a)I gave up smoking (20-25 a day, 40 year habit) and I finally was able to persuade a friend, a dentist, to pull out what seemed to be a perfectly good tooth, one back from the top left Canine 'dog tooth'. All my Cluster attacks had been left sided. I was in America at the time and in the middle of a particularly brutal ch period. The tooth was severely deformed, exceptionally long and had broken through into the sinus cavity. The clinical opinion was that the root end of the tooth displayed evidence of long term, recurring infection going back at least 25 years. I still retain that tooth, housed in a little plastic box. For about a week the attacks worsened but then strangely, rather instantly disappeared and have never returned. As stated, my reasons were my own, formulated through many years of observation and research and, since I am not a dentist and don't sell tobacco products either I have nothing to gain here. I am happy to explain my reasoning should anyone care to ask. Maybe this might help somebody else. Gerry Hogan
Gerry Hogan <gerryfh@internode.on.net>
Australia.
Wednesday, October 26, 2005 at 17:54:57 (EST)

Well, I see that I'm not the only one suffering again this October! I wish you all well in your battles, as I have not been having much luck. I don't have med ins. right now, so I can't get my Relpax this year. But, my handy ice bags are being used nearly every few hours. I have decided to change my profession; teaching was not the right career choice for a ch sufferer. All those years of college down the drain! Anyway, it's nice to know I'm not alone.
B Coody <brandycoody@yahoo.com>
DeRidder, LA USA
Sunday, October 23, 2005 at 11:39:15 (EST)

I am 65 i have had clusters since my 40th birthday i am very touched to know i am not alone best regards to all you clusterheads danc
dan carter <goldac@mchsi.com>
hopkinsville, ky USA
Sunday, October 23, 2005 at 10:26:03 (EST)

TO ALL OUR GUESTS Please come on in this site and go to the message boards. There is a wealth of information from fellow clusterheads on the message boards that can help you - information on meds, little tricks that help - and just support, support, support. Don't be afraid to register and then jump in with both feet. I promise, you won't regret it. Someone is always here 24/7/365 so you will never be alone. We are a family. Please join us. Sandy
Sandy C
Jamestown, NC USA
Saturday, October 22, 2005 at 11:11:52 (EST)

It's 2:52am and I have just come through one of the worst headaches I have had this round. I skipped having one last night so thank the Lord i slept. I've got to be up to go to work in a little while so I hope this monster is almost through killing me for this time. I 've only been having them for about 2 weeks so I know I 've still got awile to go till the go back to where they came. Each time I have one, I pray it's the last one!Thanks for being out there just to listen. God bless all of you who suffer from the horrible things they call cluster headaches. BC k
Bill Coe <bslmcoe@cox-internet.com>
Winnsboro, Tx USA
Saturday, October 22, 2005 at 03:04:21 (EST)

This is so awsome knowing that there is this kind of support in the world. I always felt so alone and as if everyone just thought that I was blowing these headaches out of the water. People never understood me....Different story now!! THANKS
Michelle Raatz <McRaatz@aol.com>
Wausau, Wi USA
Friday, October 21, 2005 at 22:06:48 (EST)

I have suffering from this kind of headache for about ten years since I was 19 years old. Normally it happened every 1,5 years and I normally suffer for about 2 to 3 weeks. All my doctor and neurologist always told me that this is migraine, only yesterday one of the doctor told me that this is actually a CH. I am very scare after reading the article here as the conclusion is "it can not be cure". May be anyone can share with me, what should I do when the pain come? I really have no idea what should I do to reduce the pain as normally I only can cry and it worsen my nose so I cant really breathe. Thanks
Rini <rrini@yahoo.com>
Singapore, Singapore
Friday, October 21, 2005 at 05:32:03 (EST)

I'm a 48 year old female and have suffered from ch for 29 years. It sucks!!!! I'm not sure if it's because I'm getting older or what but mine aren't as bad as they were and don't last as long, but they're still painful. I'm doing the oxygen and imitrex right now. It seems to help. The only bad thing about it is the insurance will only give me 9 tablets a month. That really sucks. What gives them the right to tell you that you can only have 9 headaches a month. And we pay big bucks for insurance.
cheryl <antsheshe157@aol.com>
North East, PA USA
Thursday, October 20, 2005 at 14:33:47 (EST)

Hi all It's been awhile since I have been here again. Thank you for your Email Barry(from WA). It's good to hear from other sufferes from closer to home here in Australia. I have been plodding along, trying to get a handle on my headaches like I'm sure you all are. Does any of the women find their headaches are worse at certain times in their cycle, like at ovulation and the onset of your period? Im finding a pattern here with my headaches. My first onset also has coinsided with menepause. Has anyone else found this with them also? I would like to hear from you if you have similar experiences. Still not sure if mine will be episodal or chronic yet as I have had no break since the onset 5 or 6 months ago. I get a day or so pain free each week and I have learnt to value those days. But I'm hanging in there, hope your all doing the same. Take care and God bless. Tracey : )
Tracey Quinn <traceymquinn@yahoo.com.au>
Merrylands, NSW Australia
Thursday, October 20, 2005 at 02:01:20 (EST)

UGH!!...I can't believe it. THEY"RE BACK. It started when I was in the 3rd grade and got hit over the left eye with a lunchbox of a friend who slipped on the ice. The next year at about the same time they started. I suufered every year until age 24 and my fiance(now ex)threatened castration if i didn't do something. I went to a specialist and was started on Sansert(the little yellow pill from heaven). Every year when i could feel them approaching I'd start my regimine and every year found relief. Then, four years ago I was tending bar and jumped over the bar to stop a fight and got punched in the eye(yup, same eye)and lo'and behold went HA free until two days ago. I'm going to the doctor tomorrow to see if he suggests(or will even do it)getting popped again. If not it's back to the little yellow pill from heaven--SANSERT Wish me luck Bob
Bob <bob.rawlinson@dorchesterhouse.org>
boston, ma USA
Wednesday, October 19, 2005 at 18:13:05 (EST)

Y'all can stand out here in the cold looking in or you can come on in, introduce yourselves and sit by the fire where it's nice and warm. Seriously, the guestbook isn't where you will find the answers. It's in the information and support from someone who understands what you are going through. Don't be shy, come on in and say hello to the family.
Gator
Clusterville, USA
Wednesday, October 19, 2005 at 00:13:54 (EST)

I have been reading all the postings with great interest. I have suffered with these awful headaches all my life. most people just look at you like your are crazy when you tell them how they affect you. the only relief i have found is a great big shot of demeral. I 'm taking the pill form right now, but it takes to long to get in my system. Well it time to go to bed and I'm afraid to go to sleep! I'm glad to know other people know what i mean!
B. Coe <bslmcoe@cox-internet.com>
Winnsboro, Tx USA
Tuesday, October 18, 2005 at 22:22:06 (EST)

Look I tryed this once I dont know if my call went out but I well try no body in my life has felt my hurt untel my MOM read to me what was said by the people who go trow that hell every day ..I have tryed hard to keep going .. When it comes like jackhammer in my mind .I get up mad looking at the world with killing pain in my face . Days pass so I pray for a day that I can live with . I have tryed to push it away but it is stronger pulling me to the ground.
Jesse JR
Phoenix, AZ USA
Monday, October 17, 2005 at 22:15:41 (EST)

Hi everyone. It seems that every fall, I find myself showing up on this site. I've been a CH sufferer for approx. 15, and for the past two years, it would appear that I've actually "beaten" them (if that's at all possible). This time around, when I'm woken up in the middle of the night, I've found that drinking ice cold water AS SOON AS THE HEADACHE STARTS (don't wait!) seems to kill it. Although, I do wake up 2 hours later, but atleast I feel some sort of control. I should also mention that I'm already taking a combinaison of Effexor and Prednisone. That seems to have killed it so far.... I hope that I'm not speaking too soon.... Hang in there everyone, I'm praying for us all.
Tracy <marquiseangels@hotmail.com>
Kirkland, Quebec Canada
Monday, October 17, 2005 at 21:15:12 (EST)

Welcome New People! So Sorry you're here, but so glad you've found us. I am a 20 year episodic clusterhead and would be happy to answer any questions you may have as best I can. I am not the most enformed person on here, and I am sure there are others who may have more in-depth answers for you. I strongly suggest you familiarize yourself with the site and read all the info you can first. It is a godsend and well worth it. Also, keeping a headache diary is very important in tracking in aiding yourself and your physicians in what works and what is not working. For the supporters, thank you, thank you, thank you so very much for loving and caring about your ch'er enough to find info to help them thru this very difficult ordeal. There is the supporter's corner on the message board, specifically for you, to help you deal with being a supporter- what you go thru is tough too! We love you, our new friends and we welcome you to Clusterville. :)
Jennifer <darryljen@earthlink.net>
Supply, VA USA
Monday, October 17, 2005 at 12:55:51 (EST)

Hi, These started when I was 18 years old, I'm 39 now. I got 2 cycles per year up until 5 years ago. I have gone 5 years without a cycle and have just started a new one. I started taking Zoloft, an SSRI Medication, 5 years ago at 50MG and have had zero attacks in the interim until now. Recently I dropped to 25mg per day and "wala", first cycle in 5 years. Coincidence? I'm going back up on the Zoloft. At 18, I thought I had a brain tumor. After ruling that out, the doctors always gave me anti-biotics for sinus infections that were never there. I was given so much of the wrong medicines over the years that it caused big gastroinstestinal problems. A doctor I saw last for these told me the sinuses get irritated from the headaches and that doctors often treat the wrong thing. He explained that the nerve fibres around and behind the eye are irritated from dialation of the veins in there, hence causing the excrutiating pain. Those veins and the nerve that is responsible for the pain run near the sinus cavity and effects it too making it seem as if theres an infection. This nerve runs from the brain, by the eye, ear, and towards the jaw. I have , for the first time used OXYGEN at 15 LPM for 15 minutes with a RE-BREATHER BAG and it has worked so well for me. If you havent tried it, please do. In my case, within 5-10 minutes it rids me of the pain completely. It has been nice to only have to use the heavy medicines for the occaisional mid-cycle 4 hour doozy headaches. Oxygen is my new friend! Chris (Loon)
Chris <loonsrcool@msn.com>
Schaumburg, Illinois USA
Monday, October 17, 2005 at 02:12:59 (EST)

hi all am in pain at the moment my cycle kicked in again this august after having a 11 month break they started after we had some freaky electrical storm this may sound stupid but thats the truth was so greatfull for the break. hang on in there all u cluster heads u might just get a break to i almost forgot what it felt like to be stabbed in the eye thousand times not, oh my lord cant take no more thank the aliens for this site its not great to know am not alone but it bloody helps
mad matty <mattyf_69@yahoo.co.uk>
peterborough, cambs england
Sunday, October 16, 2005 at 10:45:20 (EST)

I have had CH for 5 or 6 years but have just been diagnosed as such. I guess my having a CT scan and being told there was nothing there and they must be tension headaches, along with the fact that my remission time was long between bouts I just assumed they must be migraines (my mother suffers them). After reading the info at this site I must say maybe ignorance would have been better than knowing what I have to look forward to. I am in a cycle right now and have been given Effexor XR. I believe it is not at all what I need and have quit taking it. I see the Dr. again in 1 week and will ask to see my neurologist but an appt. with him could take up to 6 months. Any suggestions on a medication to ask for in the mean time??? I was put on Topomax at one time and found myself extremely suicidal at 4:30 am one morning. Am not willing to go that route again.
Heather <hheslop@telus.net>
Medicine Hat, AB Canada
Saturday, October 15, 2005 at 12:05:48 (EST)

Hello fellow cluster sufferers. I am so grateful for this website and my friend Dick Roosa, a CH survivor who introduced me to it. I have been reading the messages intermitently all day because I entered into a CH episode about 2 wks ago and have not gotten much relief at all. I have been having these for at lease 5 years and just go diagnosed last fall. I usually only get them in the spring and in the fall. I am hoping that someone of you will share whether or not you have experienced some of the things I am currently suffering from. I have, since the onset of this episode, questioned whether or not this was a chronic sinus infection (b/c I was gaining relief from antibiotics occasionally with this particular headache). However, I have never, in the past found anything to give me relief from the beloved CH's! I tend to only get them in the spring (April-May) and then Fall (October - Nov.) I absolutely dred the fall b/c of these and I love the colors, change of season, etc. It is so sad! I despise whatever causes these. I love spring and fall but hate these monsters. I've been awakened at 3:00 a.m. w/them and have not been able to find anything to help. I went to a neurologist this past month and she diagnosed it as possible tension headache and stuck me on muscle relaxers and a TENS unit to stimulate nerves and relax my back. No offense, but I think I'm sticking with the clusters! Almost everything I'm experiencing I've read about on this site. Does anyone out there get the "aura" in their vision and feel like they are looking through a "screen" or something like that? I also, this time, I've had a very warm/flushed sensation come over my face each time the headache returns. Periods of relief during the day for about an hour or two and then the headache returns. I wondered if everyone whose experienced these has had an MRI. None of my Dr.s have every suggested this due to the fact that they are quite certain there is nothing "up there" to be concerned about to warrant such a test. I feel like these will never end but know they always do. Both sides of my head are hurting today and my eyes feel like they're being poked out w/a letter opener. I am so frustrated. I hope someone can respond to reassure me about my symptoms. Thank you and God Bless the CH'ers!
Deanna Scott <drscott@sandhillswireless.net>
Valentine, NE USA
Friday, October 14, 2005 at 17:16:21 (EST)

My dad has got a terrible case of cluster headaches, up to 6 attacks in a single day for weeks on end and then a period of a few weeks of normality when he feels as if nothing has ever happened. It has been like this for three years now and we are desperate for help and understanding. I wish we could take him to some clinic or some doctor who will have some sort of understanding on just how bad this condition is! No hospital seems to realise how quickly one must react when an attack is coming on. We can just cry when he is having a bad attack. It feels like the whole world comes to an end and it is not fun to see your strong father cry like a baby. I wish there was some kind of help as we have been trying every medicine and trick in the book and nothing seems to help. It is really comforting to read on about other people and exactly the same experiences that they have. This is such a bad condition! Why isn't there any help for this condition? Desperate!
Sumari Olivier
Windhoek, Namibia
Friday, October 14, 2005 at 07:44:34 (EST)

I just saw a documentry about cluster headache on the Discovery channel. I m so glad to see this ws. I m suffering from this headache since last so many years. I want some Information about my headache type. can u tell me?
Ram <ramchandra27feb@hotmail.com>
Nagpur, Maharashtra India
Thursday, October 13, 2005 at 01:01:41 (EST)

I'm so glad I found this web site. I've never had CH before, so I was quite worried when I woke up with my first one in the middle of the night. I thought I was about to die and so did my husband. Went to the emergency room and found out I was having a CH!! Still having them, going on 2 weeks now. Hope they go away soon!!!!!!!!!!!!!! Thanks for all the good information.
Melissa Robertson <melissa059@centurytel.net>
Marshfield, MO USA
Wednesday, October 12, 2005 at 10:12:51 (EST)

Hi,I have been wanting to do this for a while, nows a good time. If Patty from the races @ TMS in Ennis reads this, e-mail me, thx. Now without further ado, after reading the entry from "cherubgirl" posted on Oct. 10th I had to write. I'm 45 had clusters for 14 years. Took year and a half for the correct diagnose. I found what I had on the internet, strangly enough, at this site. Advised my GP and she was in awe. I live in a town of 100,000 pop. The turnover on neurologistsis often because of wanting to move on up. I'm out of network on my ins. so things are always interesting. I had one of my worst bouts 18 months ago,went on for 10 weeks. just couldn't get it knocked out and couldn't get the balance on the prevent meds right. Been taking verapimil for years with pretty good results, and use Prednisone cycle if a bout will not ease in 2 or 3 days. If my Imitrex auto inject samples that I hoard are getting low, I start getting I'll start getting real nervous. You clusterheads know what I'm talking about. Oh the begging and pleading to get samples of Imitrex, because you guys know as well as I do, when they start coming on 4 and 5 times every night, what ins. provides just doesn't cut it. OK, here is what I've learned over the years. Be very firm with you neurologist, but also curtious and polite. It Helps. If a bout is coming on, and you know its going to be a bad few weeks,start a Prednisone treatment. Also ask for Ammbium (spelling wrong) for sleep. Prednisone can really wire you up and that sleep aid really works. I wound up checking in to the hosp for 3 day stay to get my last one turned off. My combination for prevent daily meds are as follows. Verapimil ER 240 m. twice daily, Depakote 500 m. 4 times daily, Kepra 500 m. 1 time daily. I do not forget my meds and always have at least one auto inject kit with me w/2 Imitrex loads ready. You just never know. I smoked for 24 years and had been hounded on to quit, I did, just stopped 5 and 1/2 years ago. Wound up not that big of deal after a few months, I felt better and it worked. If you enjoy adult beverages, and I like my beer, abstain during the suck times, it works. This problem seems to be seasonal, (fall and spring) I also work outdoors alot and in the heat. Be carefull of that. Overdoingit and going balls to the wall can really fire one off. I've had a good 18 months so far, with just 2 instances where I had to give myself an an Imitrex inject. That stuff works for me no matter how bad I'm in the throes of one. Good luck, e-mail me if you have any questions. Thanks for letting me express myself like this, it helped. I could go on a lot longer, but... I just wished they would go away. Jim....
Jim Thomas <james9994@sbcglobal.net>
Wichita Falls, Tx USA
Wednesday, October 12, 2005 at 07:20:58 (EST)

hello, i am so happy (well not for you) but to see that there are more people suffering from these terrible headaches. i am Deborah (23 yeurs old) and i come from holland and the people here don't understand me. they don't know what cluster is. when i am at my work and cluster is visiting me they just stare at me like i'm going mad. and i think they are right about that, i am going mad for a few ours... the medication here is very good i have immigran injections (i don't know if you people know what i mean) but i don't get it anymore from my docter because he is not believing me and he thinks i'm taking this immigran to often (to much). so i have to accept these pains. well i just wanted to tell you this and to say that we are all hero's (i think) because (from time to time) we feel so much pain and yet we are still here! i want to wish you all the best and hang on. greets Deborah
Deborah <tanjawel@hotmail.com>
Den Haag, Netherlands
Tuesday, October 11, 2005 at 15:17:10 (EST)

I just wrote something a few minutes ago and then read some of the comments that you have written. This is amazing that so many people have these DAMN headaches. My last bout before this one, I came very close to ending it all. I had never been in such pain. Unless a person has them, they cannot know what this is like, even if we each have these to different degrees. What's odd about mine is that mine are always on the right side of my head just above and behind my right eye. My eye gets so red and if I'm out, I need to get home right away (15-20 minutes) or I can't drive because I lose my vision and start to throw up. I have noticed that my scalp is very sore after I have a bout with the monster. It seems that others don't take us seriously, especially doctors. If I ever have another one like the last one I have 5 or 7 years ago, I will just have to end it all. I don't know how I made it through those situations. My clusters have only happened in the spring or fall, never in summer or winter. I read somewhere that they are caused my the change in the amount of daylight, which changes in the spring and fall with that damn daylight savings time. My clusters always wake me up at night, around 2-2:30 a.m. I have never been able to take a tylenol or any sort of aspririn to help me. It is just so terrible. I may have a bout when I get anxious about not having anything that I know will help me with the headache. I have been to the doctor several times in the past week. Today, as I mentioned earlier, the doctor gave me "frova." It seems to last longer than anything else I've tried so far. I hope you can get it and it will help you because I truly understand.
winston black <jwblack@dmacc.edu>
DsM,, IA USA
Monday, October 10, 2005 at 21:33:37 (EST)

I just discovered this site today and am so glad I did. I am having another bout with the clusters, after 5-7 years. I just don't understand this damn thing at all. Just glad to know there are others out there who are experiencing the same kinds of problems. I have not had these headaches all my life, though I had the migraine before these started about twenty years ago. My one doctor told me that they would probably leave as I got older. How damn old does a person have to be? LOL! This is just the strangest thing I have ever experienced. I have tried imitrex, the kind that one injects as well as the tablet. Today my doctor gave me something different that seems, so far to last a lot longer. I am curious to know if any of you have had any experience with this drug called "frova," short for frovatriptan succinate. If so, give me some feedback on your experiences with it. I have had two today, one at 9:30 a.m. and another at 7:00 p.m. this evening, which I hope will last me until tomorrow morning when I may need to take another. Thanks for sharing.
Dr. J. Winston Black, Jr. (Ph.D.) <jwblack@dmacc.edu>
Des Moines, IA USA
Monday, October 10, 2005 at 20:55:43 (EST)

This site is great
Emma Jenny Taylor
Milton Keynes, Bucks U.K
Sunday, October 09, 2005 at 08:10:10 (EST)

I really did think I was alone.I started clusters in January and was admitted to hospital vomiting and near to dying so intense was the pain.My poor daughter found me crawling to the bathroom.My clusters start with pain in my right eye which gradualy increases with a severity to awesome to describethen a drilling pain in my head, alo on the left side.When I have these clusters I just want to lay down and die.Afterwards,it leaves me so very tired and confused. I have just finished a bout.Mine last for three to four days.I am tired now. I am so glad to have found this site.Caroline
Caroline <carolinelarman@btinternet.com>
gwynedd, uk
Saturday, October 08, 2005 at 13:47:57 (EST)

Hope someone can help us we are new to this web site and cluster headaches. My husband is 35 years old and has had his first incounter with clusters we have had MRIs, spinal taps, blood work you name it he has had it. They say it is a cluster I found this site and it is him everything except for one thing his paine is in both tempels and both eyes get blood shot and discharge something that looks milky? I dont know if anyone out there has had this but that seems to be the only thing that is different then everything I have read. He is going on three and a half weeks when will this end? If you can help in any way please let us know Thanks so much ...
cherubhere@aol.com <cherubhere@aol.com>
manchester, NH USA
Friday, October 07, 2005 at 20:34:51 (EST)

Hi, Got a good thing going on here! I had the CL from childhood. Dr.s called them sick headaches. Teenage yrs. were good. Got them again in my early 20s. Skipped again to my 40s. Presently 52 yrs. old. Fighting the battle again. I used axert migraine med. the 1st month. Now I stopped all meds but Prednisone. I use heating pad and quickly switch to ice packs. It think it confuses the cycle. Im getting 3 bouts a nite. Sore and tender all day. I operate an asphalt paver and expose myself to extreme heat. I think thats what triggers the attacks. I drink lots of water. What a nightmare they are. Daytime fear of the nite. I hope help is on the way for all of us. Thanks for the great info. So greatful. Gary Shawver
Gary Shawver <shawgar1@evenlink.com>
Beavertown, Pa USA
Friday, October 07, 2005 at 18:20:43 (EST)

Me again. I stop by every so often when i go into a cycle. The last few cycles Verapimil and now with Depakote work very well for me, They take acouple of weeks to cut the headaches down from 2 or 3 a day to 1 every three or four days and hopefully soon to none. During the last cycle my doctor recommended that why go through all that pain until the preventitive meds kick in.Use the imitrex pills he prescribed.Relief within 20 mins.Great.I still beleive in the verapimill and Depakote. I dont think taking imitrex everyday is good or advised. Ins company only authorizes 9 pills a month anyway. Just everyone should find a good neurologist and give the preventitive meds a chance to kick in..
mike <mikezav1@yahoo.com>
USA
Thursday, October 06, 2005 at 22:11:50 (EST)

This site has been an eye opener for me, I am 51 and have been a clusterhead for about 20 years was diagnosed in south africa and was told i would grow out of it? I am at present having 2 to 3 of these monsters a day and have been prescribed cafergot surpositores,The one thing that sometimes helps is realy cold water from shower running all over my head and left hand side of my face. HOPING FOR A PERMANENT CURE FOR ONE AND ALL. Good to know i am not going mad, Thanks
Les Willis <les@leswillis.e7even.com>
Halstead, essex uk
Wednesday, October 05, 2005 at 11:19:01 (EST)

I'm 36 year old male and have had these headaches for 15 years. I am in the Air Force and it took 13 years till I was diagnosed. First, they told me I had sinus problems till an ENT surgeon ruled that out. Second, they told me I grinded my teeth till a dentist ruled that out. Then they just looked at me like I was sme sort of whinner. Finally, one young doctor looked at my records and said it didn't make any sense and refered me to a neuro. He diagnosed me with Cluster Headaches. He told me that they are rare and he only sees about 2 a quarter (every 3 months) as opposed to people with migraines (he sees several of them a day). He put me on Imitrex and Verapimil. He gave me my life back. I was 1 and a half months into a cluster with 4-5 headaches a day, each lasting 3-5 hours each. As far as "triggers" go, the only thing I notice any sort of trend is stress. My first CH hit me in the Phillipines during the Mt. Pinatubo eruption. As the base evacuated, I was on the team sent in to recover assets. Then they occured spuratically in Korea and stateside, all at different times of the year. My last one hit the day I left Saudi Arabia and now I'm getting ready to go to Iraq for 6 months to "work" with the Army. I had a flair up 2 days ago and several "hints" that I'm going into a cluster. The frustrating part is now is the time I need to focus on work and my family before I go. I can't afford "downtime" hiding in my room hoping my children dont see me in the pathetic state these headaches put me in. Thanks for letting me vent. This is a great webpage. I have found it to be a comfort to finally find people who understand.
Jay
USA
Monday, October 03, 2005 at 02:06:29 (EST)

Hello everyone, just wondering if anyone has had any luck with accupunture? So far it has worked for me. Only wish I would have tried it 20 years ago!!
Karen Held <karenheld@hotmail.com>
London, ON Canada
Saturday, October 01, 2005 at 17:17:58 (EST)

interesting site ,yeah its on again . thought i had out grown this cycle of pain. was ok for a 2years ,but no they're back. have tried many things i seeposted here.seems like sucked on hall's menthol works preetty good during the day keeping nasal passages clear. once that lower sinus cavity blocks up it's all over. that's what makes 02 treatment tough although starting before it gets completely blocked will cut it of fast. it's sure nice when it's cold out and you can step out and just breath cold air till your nose starts running and damn nasal passage opens up... pains gone in two minutes. last nite was a good nite ,first nite i got 5 hours of sleep in a week and a half. uninterrupted ! hot compress on face w/ a couple halls in your mouth seems to help speed the process.sleeping sitting up, trying breath rite nasal strips now along will a halls packed in my cheek. can't help but think layin down bring's them on faster because i sleep with my mouth open , on my back and snore like a lumberjack. that can't be good. hope and pray for a good nite and short bouts. piss-off pete
peter schmuhl
cleveland, oh USA
Saturday, October 01, 2005 at 09:13:50 (EST)

I was sure glad to have found this site. It's friday night and I'm scared to death to try and go to bed. I'm sorry to see that there are so many more of you out there that get these monsters; I would'nt wish them on anyone else. Anyway, I look forward to visiting with some of you, unfortunately it does'nt look like anyone else has found the cure yet. I told a friend earlier today that if given a choice of winning the lottery or getting rid of these damn things, I would choose the latter.
Scott <scott184@centurytel.net>
Bethune, CO USA
Saturday, October 01, 2005 at 00:13:36 (EST)

Unbelievable !! I read some of the 'journals' and was overwhelmed, THIS IS ME i thought, these exact things are happening to me ! I am 36 yr old male, who has had 2 episodes of visits from 'my friend'. 1 for about a month which started in april this year and the second one started about 2 weeks ago. Sometimes my 'friend' comes in and visits for 30 to 50 minutes and sometimes he will just stand at the window and wave for half an hour or so. I believe these attacks must have been brought on by stress, as on FEB 10th my father had a huge stroke and is still in hospital now some 8 months later, 3 months after his stroke my wife left me and I have been forced to sell the house !!.......and now these headaches !!!!. I must have done something pretty bad at some point to get all this rubbish thrown at me. When the attacks start I used to just sit and try to be as still and calm as possible, but I thought this might cause a routine to start so I now try to differ what I do, this never shortens the attacks, in fact sometimes I think it prolongs them. Someone on your site wrote about being scared to go to sleep or go out at night. THAT IS SO CORRECT. I went to a friends house last night so his wife could cut my hair and I was petrified going there as it was 07.30ish and my first visit of the day usually starts between 8 and 9. I survived !! Does anyone elses scalp feel permanently sore/tender at all times during a cluster?? This site made me feel great knowing that I am not alone and it is so difficult to explain the pain to people, now I link them to this site and let them see for themselves. I hope my 'friend' doesn't visit tonight, but at the moment he seems to have an open invitation! Happy Clustering !! TC
TC <oldfake@ntlworld.com>
Bournemouth, England
Friday, September 30, 2005 at 07:29:28 (EST)

Welcome! Please come over to the message boards and introduce yourself. There are many helpful and very understanding folks waiting to welcome you. pain free wishes, nani
nani
Los Lunas, NM USA
Monday, September 26, 2005 at 23:35:24 (EST)

It's so wonderful to finally find a place like this, I never knew there are so many of us. I was 18 years old when I started to get my headaches and I am now 24. I was releved to see that I wasn't the only person to get these but am sorry so many do. I have been in the military for four years and just got out. I actually went through 4 years of military with constant headaches. I have been to 10 different doctors and have also been to the Michigan Neurological society but all with no prevail. Imitrex is the only thing in injections not the pills or sprays. Thanks Steve
Steven Karapandza <skolar369@gmail.com>
Fraser, MI USA
Friday, September 23, 2005 at 01:28:17 (EST)

I cant explain what a relief it is to finally find people who know what I am talking about, (or screaming about, if in an episode). I actually started to cry when I began reading the posts. Doctors havent been able to figure it out for nearly 20 years, other half tries but cant relate, and my family and co-workers have gone so far as to say I was making it up. As far as my "pattern": typically yearly starting around the autumnal equinox and lasting about 6 weeks, with a bell-shaped curve of pain peaking at about 8-9 on the "Kip" scale, and episodes 1-2 times daily. Thank you for having this site, and God Bless You! (or insert higer power here, if you have one)
Tim Strannix <tpstrannix@yahoo.com>
Long Beach, CA USA
Thursday, September 22, 2005 at 10:54:17 (EST)

it's been two or three years now sence my first encounter with clusters.but now there back.like clock work every night when the sun go's down the pain starts all over again pounding and pounding like bombs going off in my head over and over again and as quick as it starts it stops and i think ahh its over.well its not thats just round one and round two starts worse than one.(many rounds through the night)and when the sun comes up the maddness stops.but i still have a small headache all day long just a reminder of whats to come when the sun gos down.(I FEAR THE NIGHT) Thanks for your site it does help to know im not alone. but knowing the pain we go through i wish i was alone. YT Mike
Mike M <midnight64@comcast.net>
Nashville, TN USA
Thursday, September 22, 2005 at 09:33:03 (EST)

Hi to you all. I am 28 and have suffered from cluster headaches for around 6 years but am still in the early stages of finding the right medication. I did research early on and thought I might have CH but my profile didn't quite fit that of a typical CH sufferer. Accounts of other sufferers seemed much more severe and clusters seemed to last longer . My attacks only last up to 2 weeks but return between 1-4 months. The KIP scale has been useful - sometimes they peak at 7/8, sometimes they peak at 4/5. I feel weak to say I can't handle two weeks of level 4 but when its days on end it feels like I'm on a never ending treadmill of pain worn down by it all (but I'm sure I don't need to explain myself here!) It's been a real struggle to get the right help from doctors, my GP told me that it was my eyes, then stress related, then finally decided it was psychosymatic because I was depressed (I wonder why!) My diagnosis has been so long and drawn out because there was a long time where a part of me believed that my doctor was right and I must be inventing this pain. I didn't feel confident enough or strong enough to fight for another opinion. Boughts of depression followed and I felt very alone. When I had a chance to use my husbands private medical insurance I found my GP was more than happy to refer me to a specialist, I saw an ENT specialist and underwent septorhinoplasty for a deviated septum that was thought to be the problem. When I went back to the ENT specialist still with headaches he referred me to a neurologist. I was relieved when he quickly diagnosed me with CH and then angry when he told me the operation I had just undergone was completely unecessary. For medication I have tried verapamil, maxalt melts, something sprayed up my nose that made me vomit - none worked. I also injected myself with imitrex/imigran but didn't react to it well at all - I really and truely thought I was going to die! I am just about to start steroids (prednisolone) and get my oxygen tomorrow so I have high hopes for some form of result. Now I know that I fit into this horrid club I do feel relieved and just knowing that people are going through the same thing is a great comfort. I gave up work yesterday, maybe when I find medication that works, I'll be able to go back to work. For now I am just so grateful that I have a lovely husband that understands!
jennifer clark <rupertrstr@aol.com>
staines, UK
Tuesday, September 20, 2005 at 12:51:38 (EST)

I´m a cluster suffer a long time ago, since I was 37 - now I´m 55.Here in Portugal I´can not find the meds recommend. I wonder if it is possible to send me by e-mail the compossition of Imitrex or another med, before this pain defeats me. Please help me.Teresa
Teresa <info@quintasaovicente.com>
braga, norte portugal
Saturday, September 17, 2005 at 10:43:42 (EST)

I've been dealing with CHs for roughly 5 years now. They come on like clockwork every fall. Starting in September and ending in late November. Oh I forget...Last year I got them from March through May, only to get them again in September through December. UGH! I hate these @&*%ing headaches. So every year I take 40 to 50mg of Prednisone (for up to three months) which prevents me from waking up at 2am, then again at 6am with the feeling of a hot poker stuck in my left eye. The good new is that the Prednisone works! The bad news is it makes my face round, major weight gain, insomniac, can't think straight, agitated, and seeing this %$&@ing drug lowers your immune system, I acquired shingles last year (I'm only 37) I need to carry purel hand sanitizer everywhere I go, because I catch every bug, and flu which is around me. : ( Sorry everyone I just needed to vent a bit. I'm glad I found this site,(tons of useful information) I'm finally going to a neurologist next week to see if he can prescribe something else other than this crap I'm taking now.
George <vr6@snet.net>
Beacon Falls, CT USA
Friday, September 16, 2005 at 23:17:27 (EST)

Well, this chronic cluster h/a stuff is just no fun. When I was in grad school (clinical psych), my dear friend and I both remember the stats seminar in which the first h/a began. She asked, "Lar, why is your nose running, and why are your holding your head and trying not to try in class--are you sick? Need to go home?" (We lived close to each other.) I had no clue what was happening, of course. From then, episodic became chronic. Life continues, however. Heck, I have two lovely 10 year old twin girls to raise, and I've been retired (well, I saved a bundle) for about four years now. All my best from Dallas--Lar
Larry Barber, Ph.D. <larrybarber1@prodigy.net>
Dallas, TX USA
Friday, September 16, 2005 at 12:22:58 (EST)

Hello, I have never done anything like this before, and am not that computer savvy. I have been getting my clusters since 1971, when I was 17. I am now 52,and still see the Demon.I was headache free for 10 years. and in 2003, my life was put on hold again. Then I was headache free till this June. I feel helpless, useless and scared! When will they end this time? Will I sleep 1 hour before an attack, or will I get really lucky and get to sleep 3 hours. I know how all of you feel. I tell people am a "Cluster headache survivor" I have had very little luck with the usual Migraine meds. The only thing that slows the duration of the intense right sided Demon is caffergot suppositories. I'm rambling, so I would like to be a part of this support system, if I may. thank you D D
Dolores Dimichele <doloresdimichele@sbcglobal.net>
waterbury, ct USA
Friday, September 16, 2005 at 09:25:48 (EST)

Hi every one. I'm back. Incase your wondering my first last ,and only entry was writen during an atack,though lite as it was I know its only ganna get worse.for a new cycle is beging for me.Please allow me to tell you all a little about myself. Well like I said my name is Dave.I've been married for 6yrs.I have two wonderful children(Nate who's 4,mia who's 2)and the greatist wife ever,Amie.if not for Ihate to think how much worse this woul be to go through.I've been geting CH for 13yrs now,and with in the last few years they've been getting worse.symptoms include the obviuse want to stick tnt your mouth and lite it pain,but more.Lately I've been getting nosebleeds,sharp pain down my back,numbing feeling in my fingertips,and toes,severe dizziness,and confustion.Ive been checked out and the Doc said it all has to do with my CH.If any one out there has or is sufering from the same please let me know!!! Thanks DAVE
David Remsky <coda611@adelphia.net>
luzerne, Pa USA
Thursday, September 15, 2005 at 10:20:57 (EST)

Just started my second bout with cluster headaches. My first was 10 years ago, lasted over a month and I had no idea what was going on. I heard a radio talk show about how nutrasweet caused severe headaches in some people so I stopped drinking diet soda and they went away. Now they're back. They started about two weeks ago after a beer or two (I'm not giving it up permanently like the nutrasweet!!) Friday night my wife and I were at dinner and we had to leave 20 minutes after we got there. I just couldn't stand the "tooth-ache" in my head! Thanks for this site - I've learned a lot and will try the non-medical treatments for relief.
Jeff
OH USA
Wednesday, September 14, 2005 at 06:20:30 (EST)

I haven't had these horrible attacks for 3 years, until a month ago, now...I am glad I found this site. Feel comfort in a guilty kind of way knowing someone else knows what this pain is like... We are certainly in an exclusive club, eh? I wake up with them - had 3 last night - Everytime, after an hour battle, I would wake up with another worse one after sleeping only an hour- last one was a marathon 2 hours. Needless to say I have a head hangover today. Thought I could manage them - don't like to take heavy duty meds, but goint to the Dr. today ( we don't have a headache clinic here in town) Hoping to try the oxygen or imitrex - Amazing that we live to see the morning after or seem halfway normal afterwards. Any helpful advice is welcome. I have had these things since I was in my early 20s- Crazy thing is, I don't fit the "typical" profile - I am a female, I don't smoke, and I only drink booze occasionally socially. So, who knows, right? I still have them some 25 years later - unreal....
Donna
USA
Monday, September 12, 2005 at 10:22:16 (EST)

Hi, I'm back. Last night it came back again. Thuis time instead of drug i tried a long (10 mins)hot shower and know what it works.Maybe it works for some and doesn't on others. Give it a try.
khairi osman <eskayts@streamyx.com>
senawang, n.Sembilan Malaysia
Sunday, September 11, 2005 at 03:00:33 (EST)

mine stated years ago and i didnt know what was going on so my GP Doc sent me to the ENT doc and 3 sinus operation later here i am still with these headaches my ch come every 3 years like clock work for 3to4 months july thu oct i'm just finding out about ch and this is wonerful to have a site like this because ya'll know what we go thru i read some of the letters the head banging ect... mine is the kitchen cabinet door well i'm here send me an email talk to ya'll later jim
Jim Malota <unclejake127@yayoo.com>
Cocoa, Fl USA
Friday, September 09, 2005 at 14:44:16 (EST)

I've suffered CH since I was a kid. Thanks to your website I may have some hope now. I live under constant self medication and up to a point I always figure its ok for me. But my son also suffers from cluster headaches and that is not good, He is only 10 years old and the symptoms are exactly like mine which are the same as this website. Sometime my wife comes home to find both of us in the same situation. I will start with oxygen therapy soon and I hope to keep you posted. Thanks for taking the time and building such a wonderful website. I never thought I was going to be one of those that found a support group on the web but unless you have it no body understand it. It took my wife years to realize how serious my headaches are, it was not until my son started that she saw that perhaps there was something to then that were not your usual migraine. Thanks and hope you exist for ever.
Jose Colon <josecolon@comcast.net>
Sarasota, FL USA
Friday, September 09, 2005 at 13:26:33 (EST)

Hello to all my fellow sufferers. My Clusters began in the Fall of 1985 or 86 while iI was in the Air Force. The Military Dr.s were confused as to what was causing these headaches. Did the X-rays, Cat Scans etc. Couldn't find anything wrong with my brain so in the meantime I was given shots of Demerol, which stopped the pain quickly (within .5 hrs)and gave me a euphoric(drunken) high but by the time my period of clusters had stopped I had become physically dependant on the narcotic pain releiver and had to go to counseling for drug addiction. They last about 6 weeks and then they stop as quickly as they started. They last for about 4 hours apiece. They come in "clusters", at intervals of every 18 months = or - 2 weeks, and this has not changed One-Iota since they began! I didn't realize this until 1991, at which time I was given the experimental drug Imitrex. WOW! A Wonderdrug....It Works! and very quickly! No more suicidal pain - no more rolling around bed squeezing my head with enough force to break my skull - no more moaning and crying out loud and wondering if there is damage taking place in my brain, with pain This intense there HAS to be damage! right? No more banging my head on the headboard or banging my knuckles so as to take the pain away from my head, and with NO side effects except instant releif! ...EUPHORIA!!! Since I Started Imitrex I Have only experienced 2 or 3 full blown headaches, and then, for only as long as it takes to get a shot or to get to the Emergency Room. I call it a Wonderdrug because it stops my clusters to within 1 1/2 minutes.Of Course the longer i wait to give myself the injection of"Sumatriptan Succinate"(imitrex) the longer it takes to rid myself of the pain. If I take it before it gets to the full blown stage then it disappears within a minute or two. If it gets to the full blown stage (which can happen in as quickly as 2 minutes) it takes longer for the medicine to take effect. And,with only ONE side effect...Euphoria! Consider this; someone has a pair of pliers and they are squeezing your eyelid,or your bottom lip or your eyeball itself, with all their might...for hour upon hour upon hour...and then all at once, they let go! You have no bruising or bleeding and the pain has stopped!?.........Euphoria! There is now a new drug out on the market for migraine sufferers I seen an advertisement on TV the other day. I can't remember the name of it but I wonder if it will help me, as my copay for 2 injections of imitrex is $20. Before this period of clusters end I will have given myself around 20 or so shots. Cluster releif is not cheap! God Bless to all those sufferers out there that haven't gotten your clusters under control yet. Be Strong, for there IS relief for you coming soon!! Ed Davidson
Ed Davidson <mredd64@yahoo.com>
Rome , NY USA
Friday, September 09, 2005 at 09:22:04 (EST)

I have had cluster headaches for 10 yrs. I have tried numerous kinds of drugs having some succses, but still reverting back to the pain. I sometimes feel that my family doctor and neroligists don't understand my desperation to end this. This website has given me a new outlook on the whole thing. Thank you and keep it up.
Rhyus Reeves <rhyusreeves@yahoo.ca>
Simcoe, On Canada
Friday, September 09, 2005 at 08:18:09 (EST)

I have epis. but when they hit, they hit bad. I can feel one in the background getting ready to attack AGAIN. Does it ever end? Positive note, Max-Alt by far the best so far.
Daniel Mc Donnell <cco325@hotmail.com>
USA
Friday, September 09, 2005 at 02:53:29 (EST)

Hi to all. Glad to know there a lot of guys out there who is suffering from CH.I'm from Malaysia and have been suffering for 15 years without knowing it coz' no doctor could tell me what I'm suffering from. Mine is episodic. It comes around about every 4 years or so. Now it has come back since few days ago. Just like you all, the pain is excruciating. I'll cry like a baby, squeeze my left temple so hard top make it go away and usually i'll vomit. So far the best medicine given tome is Pentadine shots. within minutes the pain will go away but the doc refuse to give often to avoid me being a junkie. Cerebrex tends to work but slow cox its oral. I'm seeing a neuro next week to see if i could get something better.
Khairi Osman <eskayts@streamyx.com>
N.Sembilan, malaysia
Friday, September 09, 2005 at 02:53:17 (EST)

Hi again , After a break of almost 2 years i'm back .The evil beast is back ,but after sharing my life with it for so long i'll fight it once again ,gonna be hard cause he drives me to hell and back .The only comfort I get is coming here ,be it early hrs of the morning when I wanna just die ,or when I think that "yeah " I'm not the only one .. Thank you so much for this site . Peace and pain free nights and days to you all . Lets carry on fighting . Debbie, cluster sufferer for many years
Debbie <debbie1310@msn.com>
united kingdom, uk uk
Wednesday, September 07, 2005 at 05:03:25 (EST)

I can relate to the woman who wrote a few days ago. Hell I can't even type properly. It seems that after a cluster episode has been going on for a while I become a complete wac job. Can't spell, can't type, CAN'T THINK. I have been dealing with clusters for 7 years now. Usually I have about 12 months or so pain free, followed by 2 to 2 1/2 months of the fun stuff. The other night I found myself hitting myself in the head trying to knock the pain out. Been there done that right.? Found this site a few years ago when my problem was finally diagnosed......had the trips to the hospital....Dr's thinking I was nuts telling me to take Motrin or Advil (yea right) and thinking I should seek psycological help. Thanx Doc. WE all know I wasn't crazy don't we.? MRIs, Cat scans, X-rars....the whole nine yards. Im sure some of the Dr's thought I was faking it to try to get narcodics....lol....like they ever did much anyway. As I type this I have to keep checking my spelling because I seem to have lost the ability to spell properly. I have been on Prednesone for long enough this time that they will have to wean me off of it or they said I will end up in the hospital with side effect that could be potentially life threatening. Great I have to take drugs that could make me very sick in order to not feel like just offing myself anyway.....sigh. I have also had some luck with adding neurontin in the morning and pamalor at night. If I wake up without the real bad headaches I am gratefull. Talk about sleep deprivation. I am a grown man and sometimes I just bust out crying. Seems pathetic....wouldn't wish this $^$@ on my worst enemy.
Scott Wheeler <Bender58.5@juno.com>
Ecorse, MI USA
Monday, September 05, 2005 at 21:02:06 (EST)

After 5 years it's come back!!!! 5 hours ago it had me moaning and cursing and begging it to stop and has not completely gone away yet. It started again about 2 weeks ago, instantly recognisable. The problem is that I am not at home in England but in Bolivia. My Spanish is hardly adequate for explaining what I have to the doctor and I can't find a name for it in Spanish. I used to take steroids by the handful in the past and that worked after a week or so but he seemed reluctant to do that. Finally he said I should trust him, I insisted and he gave me an injection (what I don't know)and some pills. Wonderful the clusters stopped, for 4 days I felt great, now they are back. My colleagues look at me as if I'm a wimp and offer aspirin or some other magical cure that I know will not work. Now it is 5am, if I'm unlucky a new "major" attack is due in the next hour or so. What is maybe significant is that they always wake me up, I get 4 a day, and the pain starts. This time for 3 of the 4 pain free days I woke up at 5am as normal and expected the pain, BUT nothing happened. It is as if the pain does not wake me but something in the brain caused me to wake up because an attack was due. Is that possible? If it is then maybe someone can find out what the trigger is and stop it. This was very bad, about as bad as I can take. If you know what I mean then I hope you get some peace soon.
Ian Hill <ianhill@supernet.com.bo>
Cochabamba, Bolivia
Saturday, September 03, 2005 at 04:09:31 (EST)

Hey there, have just been reading everyone elses messages, the tears are streaming. Its so good to know I'm not alone and so sad to know that you are all suffering too. I have had clusters for over 15 yrs, now 36. They went undiagnosed for the first 12 yrs.... yeah yeah its a tension headache. Thought I was going insane, had the scans etc etc nothing. Same as the rest of you. Having a bad time of it at the moment, especially being on my own with a 3yr old and trying to study part time. Had the very worst night of it last night - the meds have stopped working. Why does that happen.... you think you're on a winner then BAM So good to be able to get on here, and a comfort to know when I'm being hit that i'm not alone....not that you'd wish these on anyone. You know what I mean. Thank you all so much for sharing your stories.... lets hope and pray that the time will come when we know exactly what we're dealing with and the beast can be put to rest. Kate
Kate
Vic Australia
Thursday, September 01, 2005 at 04:39:45 (EST)

Hi all, I have suffered from cluster headaches for the past 20 years. I have had every drug I can think of. The only drug that has help is Imitrex injection.But the insurance company only lets me have 4 shots a month. I have started to try Topamax but I'm not sure if this will work or not. I get 2-3-4 headaches a day for up to 2-3 months and then they go away for 1-2 months headache free then they come back. If there is any drug out there that anyone has used that has help then to prevent headaches Please let me know..
Phil <Wayzatahockey2008@comcast.net>
Plymouth, Mn USA
Wednesday, August 31, 2005 at 19:20:04 (EST)

i have suffered headaches for many years had one for two years constantly never a day without was tested for ms and everything else. five weeks ago my eyes went glassy like tin foil and had headache since then last sunday exactly 5 wks later the most shocking pain ever i sat on the loo crying my husband didnt know what to do i felt like i was lying. went drs on the next day as no tablets worked she told me it was a cluster and gave me waffers (maxalt) seemed the only thing that has helped i just could not cope with the pain. as didnt know what to do. Yvonne
YVONNE TAYLOR <gazyvonne@yahoo.co.uk>
united kingdom, united kingdom
Thursday, August 25, 2005 at 07:01:16 (EST)

Its been about a year since i've posted anything. My husband sufferes from cluster headaches and a remedy we have found that helps us is apple cider vinegar. They sell it in pill form now which is much better then having to drink it. I can say he still gets touches of the beast but thats usually cause hes slowed down on the pills. Also, he'll fix a warm drink with water, apple cider vinegar, and some honey to drink. The whole reason i got the idea about the pills was something i had read on this sight about a man who peeled an apple every night before bed and ate it the next morning. That same man also took brisk walks and drank alot of water but had been free from the beast for some time. So hey maybe its true an apple a day keeps the beast away????
tina fankhauser <slkygreen@aol.com>
sebring, oh USA
Tuesday, August 23, 2005 at 20:10:34 (EST)

I've always tried to be unique and outside the crowded mainstream, but this? I am 39 years old and I found out a week ago that I have CH. Fortunately, my Doc has known me since I was born (literally) and he listened very attentively as I described my symptoms. More fortunately, he is a fantastic doctor and really knows his stuff. The first thing he said was it sounds like cluster headachees. He prescribed Maxalt, but when I was told the cost I balked and didn't buy the pills (the samples he had given me worked). Then he prescribed 4 Imatrex. By the fourth one they were worthless (well, to me... to the pharmacy they were worth $20 each!) After a night of pure nightmare-style Hell, I willingly paid for the Maxtal at the pharmacy this morning the minute they opened the door. So far they work every time in 5-10 minutes (with a bit of vigorous pacing and water guzzling thrown in for good measure). Today my mom found this site and emailed it to me. She had the priveledge of coming over and seeing me pacing the floor with goo pooring out of my face as I begged I'm so grateful to the founder of this site. I'm positive that I can resist the urge to go get my .45 the next time I peek at KIP level 10, so this site may have just saved my life. Thanks 'til the end of time for starting this site!
Mike Freeman <freeman6332@yahoo.com>
Houston, TX USA
Monday, August 22, 2005 at 01:14:38 (EST)

Please come into the site and read. This is the guest book and the members do not often read this. The message board link is on the left.
Matt Matlock <maffumatt@msn.com>
USA
Sunday, August 21, 2005 at 17:57:01 (EST)

Hallo There I have been a sufferer for the last 14 years. I can not imagine a pain worse than this. I use to get it every now and then, but in the last 3 months twice a day! I can easily drink up to 5 headache tablets a time and normally run down stairs to find an ice packet to put under my head. Not that it helps - it just makes it feel better. It is difficult explaining to someone what it feels like if it is something that they have never experienced. My husband is always very supportive, one evening he had a major headache and felt like running into a wall (something that I can so easily do) and said that he can not imagine what I must feel like when getting these attacks. The one way that I can explain it is when you eat ice cream and for that one moment when you eat to fast and you get a "brain freeze". Times that by 10!! Lizette South Africa
Lizette Munn <lizette@aphroditesdelight.co.za>
Centurion, Gauteng South Africa
Sunday, August 21, 2005 at 08:13:41 (EST)

Hi , A great web site for sufferers like me. i am a 25 year suffer. Is this inherited from my dad's family? My mom's side of the family doesn't have this horrible problem. So ladies can have this too!! GC
gwen collom <gcollom@aol.com>
Fallbrook, Ca USA
Sunday, August 21, 2005 at 07:33:23 (EST)

I have suffered from Cluster Headaches for over 2 years and have found little relief. Am considering DHE and hospitalization, anyone out there who has gone that route and if so, was it successful?
Rosemary Kaasa <rhkaasa@yahoo.com>
mableton, GA USA
Friday, August 19, 2005 at 07:47:13 (EST)

Hello to all those who really know what cluster headaches feel like. Even the "high" when one stops. Luckily there are not many of us. I just wanted to suggest something I have not seen mentioned anywhere. I keep a scull cap in the freezer. I make it from a small towel, soaked in water, and placed over my head so that it fits tightly. Then I carefully remove it and place it in the freezer. When an attack comes on I put the frozen scull cap on my head. It helps but is no "magic cure". I live at now over 8000 feet but this has never brought on an attack. I have a "feeling" that something best described as low-level stress over an extended period of time may be at least in part responsible. I have had migraines since my early twenties, but never at the same time as cluster headaches. I have tried most "cures" but none seem to work. I have never met anyone else with this diabolical problem so it's nice to have this place to talk to. I once started to write a "poem" on my PC as an attack started, just to see what would happen. I never finished it and I don't know where it is now.
Ian Hill <ianhill@supernet.com>
Cochabamba, Bolivia
Thursday, August 18, 2005 at 20:29:11 (EST)

what a good site - recently diagnosed at 50 - post migraines post menopausal, was begining to think i had a brain tumour! thank you
bev <kizkiznobite@aol.com>
nr coventry, uk
Saturday, August 13, 2005 at 12:27:23 (EST)

Hello Guests, So many of you are suffering and have stories and tips to share. Please note that we have a message board (link to the left). We welcome you, whether sufferer or supporter. Please sign on and post. The light is on here 24/7. The family welcomes you. Many hugs, Kris
Kris_in_SJ <kearneycmes@hotmail.com>
St. Joseph, MI USA
Wednesday, August 10, 2005 at 20:05:36 (EST)

Hi !!!. Congratulations for the web, very good for us !!! I have the Cluster Headaches from 30 years ago. Now I'm 50 years old. I hope to find some help hear. Actually use Oxigen 100% therapy with some especialized drugs.
Juan Carlos Pizarro <riomanso@terra.cl>
Puerto Varas, Chile
Tuesday, August 09, 2005 at 09:45:22 (EST)

Dr. Wright s Circulatory Technique: I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. Charlie
Charlie
Jamestown, ny USA
Sunday, August 07, 2005 at 23:21:47 (EST)

I feel less lonely now that I've found your site. My first impression is how striking and accurate the various descriptions of the pain involved in CH are. You feel as if people were talking about you. I look forward to visiting often and contributing all useful "tips" I have so far. Thank you!
André Dulak <chantaltomme@hotmail.com>
Wavre, Belgium
Sunday, August 07, 2005 at 06:24:23 (EST)

My clusterheadache came onset like July in summerand last 4 to 10 weeks. I am taking this oxgen and this is done for me.
Dorothy Irons <dorothyirons@cox.net>
Tulsa, ok USA
Saturday, August 06, 2005 at 12:13:08 (EST)

Hello Everybody.I'm suffering the CH.It started 18 years ago.I'm 33 now, so it took the half of my life.This year I got the worst cluster ever.Hello to Everyone.
Tomasz Zaj&#261;czkowski <tomthehare@interia.pl>
Tarnowskie Góry, Poland
Saturday, August 06, 2005 at 04:17:55 (EST)

I have felt the ice-pick pounding behind my left eye for about 2 months every year for the past 17 years. TODAY I FOUND OUT IT IS CALLED CLUSTER HEADACHE. I always thought it was "normal" migraine, but it was so strange that the damn pain would go away for a year and than return. I am glad to know I'm not alone (or crazy). Yor web-page is estremely accurate as simptoms, etc. CONGRATULATIONS ! In the past 5 years WATER HAS HELPED A LOT reducing the pain (a lot of water !! about 10 glasses when the pain starts). This month the devil is back in my life.. I will try the Oxigen. Thanks again for your web-page.
F. Cossio M. <fcossiom@yahoo.es>
La Paz, Bolivia
Wednesday, August 03, 2005 at 15:24:50 (EST)

well, here i am again in search of help. i have had CH for almost 12 years now. it seems the older i get the stronger they get. sometimes i'll try a new medication and that may work for a while, then BAM! the beast is back and kicking my ass worst than before. i used to have them every 6 months or so and they'd last 2hours at a time. now they last 2hrs. 30min. at a time and they only stay gone for 3 weeks at best before they come right back. iwould give my first born for a good nights sleep. even when they take a day off i have the hardest time sleeping because i'm waiting on one to come. it's insane! noone understands. they all think a couple of tylenol and a nap will make it better.and that just kills me. how dumb is that? certainly if it were that easy wouldn't i have figured that out by now? i am no longer able to work. staying at home is slowly driving me insane. my doctor is the biggest idiot in the world. he just keeps sending me to specialist, and most of them put me on meds that don't help or they just come flat out and tell me that they're at a lost. i appreciate the honest approach. that at least saves me 2-3 hour drive. i feel so damn helpless and i HATE IT!!!!!!!i am just so sick and tired of these CH running my life. no matter how you plan your day you always have to worry if the beast is stalking. these doctors shouldn't be able to practice medicine if they are not willing to help their patients. almost every doctor i have seen asked me what is a cluster headache? the information i give them is all they ever know. most won't even make an effort to find anything else out. sorry, for going on and on, iam so frustrated and i feel alone. thanks for listening.
faye <Yntrenton@aol.com>
trenton, tn USA
Wednesday, August 03, 2005 at 00:02:23 (EST)

Hi everyone. I have just been diagnosed with Cluster headaches. My general practitioner is sending me to a nuroligist to see what I can do to manage this illness. I have had Chronic Fatigue Syndrome for the last 14 years and was feeling that I was finally coming out of the haze and have now been hit with this. As I explore your website I begin to realize what I may be in for and it scares the hell out of me. I found your site through Google and I think I will be glad I did for I think I'm going to need the support. Sometimes I think life sucks!!!!!! Things were going so well in my life. Well, I guess I have to take each day as it comes and learn to live with this new illness, as it seems there is nothing much more I can do about it. Thankyou for being there to help those like me who suffer. Take care everyone Tracey :)x
Tracey Quinn <traceymquinn@yahoo.com.au>
Sydney, NSW Australia
Tuesday, August 02, 2005 at 04:14:41 (EST)

Hello, I fear that I have cluster headaches. It only started about a week or so ago. My girlfriend was in town visiting and we were drinking some beers. After 3 beers I had a sharp shooting pain in my left temple, and all I could do was clutch my left eye. I told my girlfriend I thought I was having an anyuerism (sp?). Anyways, I went in the bathroom thinking I drank some bad beer and needed to throw up, but instead just took a cold bath. I felt a little better after that, but it still hurt. I drank some water, took some tylenol and put a bag of ice on my head. I was able to sleep the rest of the pain off, and figured that would be the end of it. But the next night I woke up in the middle of my sleep with the same pain. Did pretty much the same thing, but now I think every night since then I have woken up with a headache. Just today during the daytime I was dozing off watching TV in the chair and I got another one, it lasted a long time and still kind of hurts. I finally decided to look up my symptoms on the internet and found that there is actually a condition that matches what I am going through. I will be going to a physician soon, I can only hope that it isn't too severe.
Thomas <skofft2134@yahoo.com>
Key West, FL USA
Sunday, July 31, 2005 at 18:23:04 (EST)

I don't have CH's but I think my husband does; he gets a terrific pain that starts in his nose he says, then it leads to an incredibly intensive headache. Oral Imitrex does seem to work. He also gets some relief if he quickly uses a nasal spray, like Afrin or similar products plus ibuprofen. I wanted to pass along an idea for the person who wrote the "Imitrex Tip" listed on the side bar. As a nurse, I've run into unusual injection dilemmas and think it would be MUCH easier than dismantling the injector, to try the following: Pull the plunger out of a new insulin syringe (they're nicely marked for easy and accurate small doses). Keep the cap on the needle. Inject the full amount of Imitrex into the barrel of the insulin syringe. Now, gently re-insert the plunger into the top of the syringe and turn the whole thing upside down, needle up in the air. The fluid should run down again the rubber part of the plunger. Simply carefully push the plunger until the fluid is up against the needle and you're ready to inject whatever amount you need. Hope that helps someone.
mimi <mamamimifive@aol.com>
Blackfoot, ID USA
Sunday, July 31, 2005 at 04:51:59 (EST)

I have clusterheadaches and they suck, I have had them since 1995 and I still hate the fact that I can always feel the presure all the time, if anybody has any ideas for me plz email me thanks
Joseph Kendle <kendlejoe@yahoo.com>
Aurora, IL USA
Saturday, July 30, 2005 at 22:54:26 (EST)

My husband suffered from Cluster's for many years. His were hereditary and started at the age of 19. By the age of 35 due to the Clusters he was having mini strokes. He died at the age of 42 with a massive stroke. Our daughter was dignoised at the age of 7 with true Clusters. Now watching her go through the same pain and at an earlier age is heartbreaking. She is now 16, so far no medicine has helped. It is affecting her school work and even though she tries to keep a positive attitude, its hard to when she is in a level 10 pain for days on end. The Doctors also found that not only did she inherit her days Clusters but my migraines. Poor kid can start with a Cluster and get hit with a migrain on top of it. She can now tell you which one is which when it hits. Are there any other parents who have had a child dignoised so young with true Clusters and migrains on top of that. This is the first time I have ever found your web site and I have sent my daughter Sam a link. How wonderful to find others and a support group. Sincerely, Ruth
Ruth Janney <Out0fTheMist@aol.com>
Boones Mill, VA USA
Thursday, July 28, 2005 at 17:20:18 (EDT)

i hate having these headaches. i feel for those people that suffer with these types of headache. when my head startes hurting i would like to rip my head off.
andrea <andreabrat2003@yahoo.com>
columbus, oh USA
Thursday, July 28, 2005 at 05:52:57 (EDT)

Hi..I am glad that I found your website and I am having a bad time of it. I have had these clusters since I was very young and I am 53 now. I have been cluster free for the past ten years and just like everyone else, I thought they were gone. What do we have in common? I have just finally met someone who suffers as well but I am told only 1% of the population has this affliction. I have thoughts of suicide but then I look at my husband and then I know that it is not an option right now. Last night I begged and pleaded with God to tell me what I have done that could have been so wrong that I ended up with these. This is so humiliating. I do the oxygen, varapamil, elavil, egotomine and over the counter drugs. Any other suggestions??
Maggie Cavalier <mcavalier@rogers.com>
Oshawa, Ontario Canada
Tuesday, July 26, 2005 at 10:34:43 (EDT)

Just wanted to pass this bit of information on. My husband had Cluster Headaches for 25 years. He went on oxygen at night for about 6 months before the time of year he had the headaches. He never had another on. I know how he suffered and wanted to share this information with you. Good Luck and God Bless.
Shirley <mash71803@aol.com>
Douglasville, GA USA
Tuesday, July 26, 2005 at 08:49:22 (EDT)

Hi, Well I'm shocked I don't feel insane anymore these CH started about two weeks ago I jave been to the doctor twice and the ER once.I want snatch out my hair. I thought I was having a stroke because it's only on my left side and it feels like some one has beat the shit out of my left eye.Every thing is on the left side. I have taken every thing you can think of and nothing rid me of the pain.Friday I had an MRI and all day I was fine than two hours before I was ready to shoot my braines out.My husband has been pretty good to me,but he geting tired of hearing that I have a headache. My parents and grandma say it's because I'm only 21 and have three kids.I have never had pain like this I was hoping it was a blood clot or something were I knew it would end soon.jk I feel hopeless restless and tearful.I'm angry that my left eye want stop twitching and watering up.But I keep trying to do stuff to keep my mind of the knawing pain.I have re-arranged furniture re-organized drawers and cabinets and much more. I can't sleep and when I do sleep it's not for long then I wake with this pain.It makes not me I normaly am so strong and full of life but now am mad,hateful,and disgusted.I'm hurting and all I get from my 4,3,and 10 month old is mommy I need you and all I want is this pain to go away that all I focus on.When will it end.I'm scared.Finding this web-site proably saved my life.I have become depressed and consumed with all of this I don't know how to thank you.Well I go to the doctor on Monday reading and researching has given me knowledge to prepare for this and also save me from grief of going threw the wrong channels.
Victoria Faulkner <victoriafaulkner@bellsouth.net>
WarnerRobins, GA USA
Saturday, July 23, 2005 at 02:20:43 (EDT)

I'm 54 & going through my 4th bout - Sitting here at 11:05 PM waiting for what I know will happen in the next 30 to 40 minutes (it's strange how close you watch the clock ... counting down to showtime) - I found this website night before last and I could not believe that other people are suffering the same way - They come like clockwork, neck gets stiff, dull pain in forehead - then all hell breaks loose. My left eyelid went "droopy" after the 2nd bout and it has been 3 years since the last one - thought I had beat it - but guess not. Anyboby have any suggestions on treatment ? (other than asprin, ice packs and prescription pain-killers - once it starts ... those are like "pissing on a forest fire")
Bill <wehrensperger@comcast.net>
Coppell, Tx USA
Saturday, July 23, 2005 at 00:06:42 (EDT)

I am 53 and have suffered with cluster migrains sine I was 19 ,my mother suffered with the same thing ,I do not know what triggeres them ,I had the 12 years ago and have got them now,but when I get them they last 2 to 3 months
lucy dimingo <lucydimingo@hotmail.com>
melbourne, vic Australia
Friday, July 22, 2005 at 10:07:25 (EDT)

HI, I am a "young" 64 yr.old woman. I have suffered with these ghronic CHs for 9 years now. For the first four years each doctor I went to looked at all the CAT scans, MRIs,and other workups, shrugged their shoulders, and sent me home. Initially, the pains were only during the night, and were definitely a #10; it was horrendous. My GP had me on Indocine as an intervention after the pain started,and that helped to some degree. Then they started coming during the day too and I was beside myself. After four years of this, there was an article in the newspaper about cluster headaches and I looked it up on the internet.(I had never heard the term and no doctor ever mentioned it!!) I actually cried when I read all the info. on this site; I said to my husband: when all these people describe their experiences, they are talking about me! I found a neurologist that did validate the concept of CH and he has been working with me for the last two years, trying all the medications of choice. Most have limited effect, but the 2 1/2 TR Verapamil every night has almost eliminated my daytime attacks, although I do have a breakthrough every couple of weeks. The nights are still a problem: I have not slept thru, painfree, in many years. Tonight I will try 15 liters of O2 ( tried 7 and was of no use.)I've added caffeine (soda) to my meds during an attack and that seems to abort it a little faster. It is so good to read these message boards, as I really do not discuss the problem with anyone ecxept one dear friend and my children and husband know. But for some reason I feel embarrassed during an attack and try to hide it. It is so hard. What a life. Madaline
madaline
Smithtown, NY USA
Thursday, July 21, 2005 at 19:58:08 (EDT)

Hi,i have only just discovered this site and printed off some of you information the other night and read through your memo board.I have suffered chronic cluster headaches now for 6 years but was only diagnosed 3 years ago. It was really strange to read about 'ME'!!! I am so glad that i have found this site and am looking forward to sharing mine and your experiences and lets hope and pray that a cure will be found for the demon.
Gary Freeman <kim.freeman@btconnect.com>
New Romney, United Kingdom
Thursday, July 21, 2005 at 16:57:38 (EDT)

I have been a CHRONIC Cluster Headache suffer for about 14 yrs. now. I was a 11 yrs. old when they started. I went though pure HELL. My childhood did not exist. High school was a total nitemare, I missed so much school, I was withdrawn, and was forced to get my G.E.D., I had $10,000 in dental work done to my teeth because I was told it was TMJ. I was told it was seisures, it was being caused by my brain tumor(AVM), pretty much anything the doctor's could come up with. In 2000 I was finally dianosged at the Cleveland Clinic in Ohio. From there I was put on Indocine(anti-inflammatory). It has worked great! I have had 2 children, and during both of my pregnancy i was headache free. But they soon returned. I still get them but they can been gone for months and then return of a few weeks at a mild level.(As long as I take medicine.) I never had a remission stage, and I had them 365 days a year, 8-12 a day. they can sometimes still run my live, but nothing like roaning it.
KRISTEN <RLEEDY@GO-CONCEPTS.COM>
LEBANON, OH USA
Thursday, July 21, 2005 at 01:00:18 (EDT)

I am so glad to find you people!! I developed cluster headaches,(epsodic)19 mos. ago after a freak accident. I suffered damage to the left side of my head.( eye, face, cheek and skull.) After a variety of doctors and tests. I was sent to a Nuerologist with cluster knowledge. He read my diary, took one look at me , ( I was in cycle.) He knew right away. I am 41 years old and have only experienced few headaches in my life.I have become a prisoner in my home, my life has changed dramatically. I am scared.
Jackie Bobcean <oscarviola04@yahoo.com>
East Pointe, mi USA
Wednesday, July 20, 2005 at 20:55:41 (EDT)

Hi all- My name is Tara- I'm a 30 year old female and have suffered from CH Syndrome for 11 years. I feel I've tried everything there is to try- and all too often, I get to a point of wanting to end it all. My bouts have increased to 6-7 week clusters, 3-5 attacks a day. Mind you, this only happens in January, February, June, July, August,September, October, and November. So I'm trying really hard to appreciate the good months, but it's not working out that way. I have no life outside this hell. Everything I do seems to trigger the gates to this hell.
Tara <tlag75@yahoo.com>
Mankato, MN USA
Wednesday, July 20, 2005 at 01:19:11 (EDT)

I hate this crap. I can't do anything. I have suffered from CH's for 5 years now. I get them for about 8 weeks every year or every other year. I have a very mild one (0.5) ALL day long and then around 8pm, it intesifies to a 10+ . I can't even put my daughter to bed or anything. I tried to get an appointment to see a neurologist and the earliest they will see me is not for another month!!! The stupid receptionist has no idea how much pain I'm in. My family doctor isn't that familiar with them, so it's hard for him to understand the pain as well. I'm on Zomig, but it barely helps. My clusters last for 1-2 hours. I wish they only lasted for 30 min., like most of you.
Toni R. <onlyonetoni@yahoo.com>
richmond, va USA
Tuesday, July 19, 2005 at 10:51:41 (EDT)

Hello everybody! Sends this again wrote wrong name on the pills. Gabapentin is the right name. I must tell you that my doctor has tested me and 4 others with a new medication. I´m very happy whith it. The pills i got from him is used for pepole who has epilepsi. The doctor told me that I should go on with a cortison preparate cold prednisolon if i got pain, I didn´have to because there where no pain at all. I could feel something happen in my head everytime the headace attacks arrived but whithout pain. A sensational feeling! The name of the medicin i Sweden is Gabapentin. I must tell you that i have had Cluster headace for a period of 1,5 month whith 23 months delay, since i was 20 years old. Now I´m soon 50. The Last time, about two years ago I took 130 injections before that period was over, the werst ever. I didn´t want to live. My doctor told me that i was playin with my life taking so many injections and that we must try another way, so we did and this time i didn´t take any injections at all, I hope this information can be useful for others in the same situation. I have now stopped medication and are wating for my next period in about 19 moths. And this time it doesn´t feel so horifying to know that I have more clusteraheadace ahead of me. I hope this information can help anyone to escape the devil. My best regards to you all! Tommy Ronning
Tommy Ronning <tommyjronning@hotmail.com>
Karlstad, Sweden
Tuesday, July 19, 2005 at 06:49:50 (EDT)

Hello everybody! I must tell you that my doctor has tested me and 4 others with a new medication. I´m very happy whith it. The pills i got from him is used for pepole who has epilepsi. The doctor told me that I should go on with a cortison preparate cold prednisolon if i got pain, I didn´have to because there where no pain at all. I could feel something happen in my head everytime the headace attacks arrived but whithout pain. A sensational feeling! The name of the medicin i Sweden is Gaspotin. I must tell you that i have had Cluster headace for a period of 1,5 month whith 23 months delay, since i was 20 years old. Now I´m soon 50. The Last time, about two years ago I took 130 injections before that period was over, the werst ever. I didn´t want to live. My doctor told me that i was playin with my life taking so many injections and that we must try another way, so we did and this time i didn´t take any injections at all, I hope this information can be useful for others in the same situation. I have now stopped medication and are wating for my next period in about 19 moths. And this time it doesn´t feel so horifying to know that I have more clusteraheadace ahead of me. I hope this information can help anyone to escape the devil. My best regards to you all! Tommy Ronning
Tommy Ronning <tommyjronning@hotmail.com>
Karlstad, Sweden
Tuesday, July 19, 2005 at 06:12:06 (EDT)

I've been with CH for about 10 years. I remember the day it started! It took 8 years and numerous doctor visits before I ever heard the term 'cluster headache' ...surprisingly, my doctor finally learned the term! I still have yet to meet another sufferer in person, but it's a relief that I can find you on the web and am not alone. I went through a TWO YEAR break with no cycles, but about 2 months ago they came back in full force. I recognized the shadows as soon as it started. It didn't take long to remember the 'dance'. Anyway, thanks for just being on the web to educate the ignorant and encourage the sufferers.
James <frankjw99@yahoo.com>
Fort Worth, TX USA
Monday, July 18, 2005 at 23:14:24 (EDT)

I've come to visit. I haven't had a CH since Oct and at that time it was mild cycle. I've had them for 30 years and just in the last 2 years thecycles have been short and mild. Don't know if its because am growing out of them or i finally found the right medications. Verapimal and Depakote and was finally brave enough to take oral trex the last cycle. Trez was amazing. Also the last time I decided to stay ona small dose of verapimal.Used to come to this site for support..its nice to just visit when HA free...though I feel very bad for those who suffer....hang in there
mike <mikezav1@hotmail.com>
ny USA
Sunday, July 17, 2005 at 15:33:07 (EDT)

I have been suffering from CHs for about 30 years. I am now 51. I have been through the Drs plans as the rest of you have, to no avail. Percs, oxygen, hot coffee, loads of drugs suggested by VA docs. Nothing did the trick. And the idea of injections was not on my list of ideas at all. Recently I was reading in a herbal medical book and lo and behold there it was. A section on cluster headaches. A simple solution. Hmmm. Ok I was desperate. So I went to the store and bought the hottest red peppers I could find. Brought them home, put one in a zip lock baggie... crushed it up, took a q-tip and dipped it in the oils of the pepper, and wiped the inside of my nostril. Within 15 seconds the burn started...and within 20 minutes the screaming pain stopped. WOW! That was the easiest one I have ever had! It took a little while for the burn to subside.... but big deal! I have continued this through this last two weeks of headaches, and used no drugs and very little oxygen. As far as I am concerned, it has been a blessing for me. I can live with this. The headaches i am having now are nothing like the ones I started with this cycle, and the sweating is vurtually gone, the ice pick pain is gone ect ect. I can't really say enough about how this has helped! Anyway... if you should decide to try this ... keep one thing in mind. Keep the pepper oils away from your eyes! Use two tissues, one for when you are wiping away those tears, and one for the running of your nose. And if you get it on your skin, don't use water to clean it off. Use milk or vinegar. I know this all sounds crazy, but I wasn't too sure it hadn't driven me to it. If you want to write me... i am here for anyone that would like to talk about it. Good luck.... Lou
Lou <oldfart10146@aol.com>
Redmond, Wa USA
Sunday, July 17, 2005 at 10:44:13 (EDT)

pleased to finally find you. i thought i was alone. the doctors tell me women do not have cluster headaches. i feel releived to know they were wrong.
faye <Yntrenton@aol.com>
trenton, USA
Saturday, July 16, 2005 at 23:22:37 (EDT)

After going 2 1/2 years without suffering from CHs they returned with a vengeance. I thought I had beaten them but alas I was wrong 1 month ago. I suffered my first 9 last night since their reemergence. Sweet GOD Almighty! Sadly I see that I am not alone though.
Sean McCarter <scamrtst@yahoo.com>
Los Angeles, CA USA
Saturday, July 16, 2005 at 17:00:43 (EDT)

Another Cluster headache sufferer! My day has been made! Finally a website with all the information I need to research this miserable, ruthless sickness-MK
Michael Kodsi <bocahabs@aol.com>
Boca Raton, FL USA
Saturday, July 16, 2005 at 15:39:20 (EDT)

Hi.My name is Julian.I am 46 and started around 30 years old with my CHs.They come like around every 2 or 3 years for 30 or 40 days.I am having my fourth CH in the last 12 hours.I feel a horse into my head.I can't more.Thanks by your web site.
Julian Chica <julianchira@starmedia.com>
Cali, Valle Colombia
Friday, July 15, 2005 at 15:57:55 (EDT)

thank god someone knows how I feel
GREGORY HART <GHART@CHARTER.NET>
NEWNAN, GA USA
Friday, July 15, 2005 at 03:07:11 (EDT)

Well, after 2 years of excrutiating pain at 8:00 P.M. every night I think I might have a diagnosis. At first it was allergies, did the imunotherapy route, no success, then dental work, no success, then Trigeminal Neuralgia was the cause?? Now finally the neurologist says CH, currently taking 400 mg of dilantin a day, does this sound right? I have no clue, it seems to be helping but if there is something else out there I would love to know. Also had an MRI and MRA recently both show a small anurism on right side of brain, now off to the neurosurgeon!! I am desparate to solve this puzzle. My family was beginning to think I am a nut case, and frankly so was I. Does anyone else have an anurism? Could this be the cause? Desparately need some answers and it seems no one has them. Any one out there have a clue? Please help
Carol DeAngelis
Freeport, PA USA
Wednesday, July 13, 2005 at 19:58:00 (EDT)

5th grade. That's when the first one hit. I actually thought it was kind of cool. I had never had a headache and I thought getting one made me more grown up. The irony is now I feel like a baby when one comes on, but that's another story. Anyway, that one turned into one a day for the last month of my fifth grade year. I remember my teacher rolling her eyes when I asked to go to the nurse on the last day of school. No matter how bad I looked, she always thought it was "just a headache." Until my sophomore year of high school - that's five years, folks - my mom refused to take me to see a doctor. The way they were just on one side of my head, the way my eye watered and my nose ran made her swear they were sinus headaches. When she caught me slamming my head into our house's front hallway and screaming like a little girl at two in the morning she chaged her tune. MRIs followed. A doctor tried to tell her that TMJ was causing the pain. I hope the state medical board took that quack's license. Then it was Tenormin, Calan, Verapamil, Elavil, Midrin, Duridrin. Nothing worked. I ruined my stomach eating aspirin by the bottle. I got to see a neurologist my senior year. Oxygen became my saving grace, a cylinder the size of a VW in my bedroom. Played hell with my love life, being that girls didn't want to associate with "birth defects" (a nickname given to me in summer school when I started having headaches there). The O2 didn't make the trip to colloege with me, but Imitrex did...and I was happy. Except for the limited dose. I learned to ration. I am an insulin dependent diabetic, and that gives me the ability to reapportion my supply into new syringes. But the doses still didn't last the cycle. Insurance will only pay for so many per period. And that's how it went for the next eight years, trying to pick and choose which ones got the drugs and which ones I weathered to save my supply. And then in June of 2003 they stopped coming. I thought it was over. I thought I could live a normal life. I even got to work on a novel earlier this year, something the attacks had prevented in the past. Halfway into my book, some 40,000 words, and they're back. As of three weeks ago, the demons have returned. And I'm out of Imitrex. I hope I'm not out of a job, as I've already called in three times thanks to nights and mornings under attack. Sometimes it takes all I have from taking the only medicine I know that will stop the pain forever. Full Metal Advil from a Smith&Wesson; dispenser gets tempting, but I'm not about to let these bastards win. I don't have much else to say. You've all felt the same things. I'll keep in touch.
Joshua Espitia <BasqueJosh@cs.com>
Corpus Christi, TX USA
Tuesday, July 12, 2005 at 01:03:36 (EDT)

Sweet God alive. I broke the cycle. After nearly six weeks of torment I'm no longer having CHs. I slept like a baby last night without any over the counter meds. I didn't get a CH today and I feel great. 5pm came and went without a hit. I'm hopeful I'll stay CH free for another year or two. Sweet God alive.
Kurt
USA
Monday, July 11, 2005 at 18:57:42 (EDT)

Ouch this mother fucker hurts What can Isay Take it away
t <949@hotmail.com>
baltimore, md USA
Friday, July 08, 2005 at 22:33:35 (EDT)

I went almost a year without a cluster headache. Then two weeks ago I got that notice that I would be back into the swing of things. The first few days weren't that bad. I got hit once a day around supper time but I could sleep through the night without waking. On the fifth day I started getting two a day. One a supper time and the other after I went to sleep. The headaches kept coming more frequently after that. One about 8 in the morning. Another around 3 in the afternoon. At night I'll get one around 6 quickly followed by another in less than 2 hours. Then the cycle repeats itself. It's been that way for over a week now. I'm not sure how long this cycle will last. I hope not too much longer. My headaches are more severe (I think) than ever before. Maybe I just can't remember how painful they were in the past. I don't know. I went through the doctor and medicine game over the years and nothing seemed to help me. I do like to take cold showers when the pain gets too intense. That seems to help a bit. And, abstaining from alcohol during a cycle clearly helps. Alcohol triggers my headaches. So does chocolate for some reason. So I just stay clear of those things when I'm in a cycle. I don't stay home from work. I go and just guts it out when I get a headache. But, when I get home I stay home. Since I get headaches after I go to sleep which wakes me up, I'm tired and try to rest when I don't have a headache. Besides, I don't like being away from home when I get one of these. I'm rather anti-social. Well, just for about 30 minutes or so until the pain subsides. Anyway, does anyone have any home remedies for these things? I like the cold shower thing. I'm trying the ice water thing now and that seems to help. Well, good luck everyone. The pain is hurtful but they're not deadly. We're just special people with a unique malady. Although I'm glad I found this site I would be more gleeful if I didn't need to seek it in the first place. All my best.
Jeffery <no5balmoralroad@yahoo.com>
Marietta, GA USA
Thursday, July 07, 2005 at 22:08:01 (EDT)

I'm 40 years old and have suffered for over 18 years. I've kept a log. I'm currently in a dreadful cycle right now. It started on 3 June and I'm still in it. I've been getting 3-5 cluster headaches a day since then. I haven't had a good nights sleep in all that time as well. Actually, I dread going to bed because I know I'll be up in a couple of hours with my head pounding. For a long time I thought God was punishing me for some trangressions I've made in life. Then I found this site and learned more and more about this afliction and the many here who are also aflicted. I went nearly three years without a cycle until this one came. I almost forgot about them altogehter until I was out for my wife's birthday and we shared a bottle of wine. Shortly after my first sip I began to feel that old sensation coming on. I told my wife what was happening and with her understanding we paid the bill right away and left. She drove to a nearby park and we walked and walked while I suffered until the pain receded. Jokingly I told her we were in for another long ride with this. I made her promise not to awake with me at night and even selpt on the couch. Every night since the recurrence I've been up around 2AM pacing the floor in agony. I go to work every day and get a couple of hits each day while at the office. Fortunately they don't last too long. Maybe 20 minutes. I simply shut my office door and pace around until it eases up. Coincidently, my supervisor also suffers from these things. I told him when it started that I has in a cycle. We actually laughed about it. "here we go again". Ha. By the way, nothing works for me. A cold shower helps sometimes. Time is my best remedy. I can handle a 10 on the KIP scale as long as I know it will pass. Hang in there folks.
Jason <mcneilch@yahoo.com>
USA
Thursday, July 07, 2005 at 19:16:02 (EDT)

Glad you're here and I'm here. I'm going through a cycle right now and thought i'd drop you all a line. I'm a 10+ KIP victim. I go from pain free to 10+ in seconds. Sometimes I don't see it coming. It's just there. Night time is the worse. I fear going to bed when I'm in a cycle. I know that within 2 hours I'll be awake with one hell of a CH. Sometimes they go away within 30 minutes. Sometimes they don't. I tell the wife to just stay in bed. There's nothing she can do. I'll be back in bed soon enough not so well off for the wear and tear. Damn, I sure wish I didn't have this afliction. But it is a reminder to me that being pain free is blissful. Sometimes I forget that when I'm not in cycle. These CHs are such a demonic condition. I've had my suicidal times. I'm passed that now having been through it so many times. My luck, I'd have them in the after life as well. I ran out of hope for any med to help me. I've tried them all. I'm now using the ice water routine. I can't say that it cuts the hits down in duration, but it seems like it does. Also, taking my mind off the pain by watching TV helps it seems. I mean, what else can I do? I went through the self-pity thing. It doesn't help so what the hey? I've lost so much sleep this time that I can barely drag myself to work. Well, one thing about having these damn hits that they will abate and I'll be pain free again. That is such a sweet sweet moment when the demon leaves me for awhile.
Ben <benzukane@hotmail.com>
USA
Thursday, July 07, 2005 at 00:46:55 (EDT)

Hiya, peep's! how ya'll doin'? I'm fine ):( I g2g, my teacher's looking at me...............yeah, i'm in SUMMER SCHOOL!!!!!!!!!
Dylan <Black_heaven345@yahoo.com>
Stevens Point, WI USA
Wednesday, July 06, 2005 at 12:42:35 (EDT)

I figured I'd be back. It's just past 1AM and I awoke with a killer headache. I guess I'm on a new schedule of 5 CHs a day. I'm now at KIP 10 but I'm not giving in to it. I'm here writing, drinking ice water and trying to focus on something other than the agony going on in my head. With each passing minute I'm getting closer to pain free, at least until the next CH hits in a few hours. Thanks to this website I no longer go through the 'why me?' syndrome. I just am thankful I'm among friends here who know fully what this is like and how we all deal with it in our own ways. Man, I'm hurting now. A full 10. But, you know?, I've been through this so many times that I'm just dealing with it. I know it will go away and I'll be back to "life is wonderful" stage. Maybe someday they'll come up with a way to crack open my head and rearrange my blood vessels to untangle the log jam up there that causes these things. I would be the first in line to give it a try. It's got to be better than this. I just blew my runny nose and wiped the tears away from my eye. When I went to bed earlier I asked God to get me through the night without an attack. I guess He was busy somewhere else and didn't hear me. Back. I had to pace the floor awhile. Still no let up and I'm into 15 minutes now. More ice water. I think I'm peaking now. The pain is at its height. TV on now. Another diversion. 20 minutes. Still no let up. I'm getting closer now. A moment of easing then back to the intense pain. A moment of easing then back. I think I'm calming down now. 25 minutes into the attack. I'm getting confident that it's going away. More ice water. Ah... It's really going away now. The pain is easing up. In five minutes I'll be out of this agony until the next time. Yes! I'm going back to bed. I got through this in under 30 minutes. Will I get 5 CHs again today? Time will tell. I'll know soon enough. All my best, Kurt
Kurt
USA
Wednesday, July 06, 2005 at 01:27:17 (EDT)

I'm having my fifth CH in the past 24 hours. This has been going on now for three weeks in a row. Worst I've ever had them. I'm usually a two a day kind of guy. One at 5pm and the next at 1AM. I'm used to that schedule and this cycle has me perplexed. I'm wondering if my CHs are getting worse as I get older. Anyway, the pain is acute right now. I'm dealing with it. Maybe I'm just getting used to it all. I'm not panicking like I used to. An hour every now and then of intense pain, runny nose and tearing eye...then it's over until the next 'clobbering'. Ain't this a bitch? I'm taking the advice of some of the readers that suggest I busy myself by writing down how I feel while I'm in a CH moment. This takes effort. But, I'm doing that now. To recap today, I had my first hit at 1AM. The second hit came at 8:30AM while in the office. I had my third hit at 10:30AM. I came home at 5:30 and got hit again. It's now almost 10PM and I'm in the midst of my fifth hit of the day. The good thing, I guess, is that they have all lasted only 20 minutes or so, and then go away as quickly as they came. I'll try to sleep tonight. If the cycle holds up I'll be back here around 1AM and fill you in on how it's going. With any luck, I won't be here. Onward.
Kurt <kurt9550@yahoo.com>
USA
Tuesday, July 05, 2005 at 21:48:46 (EDT)

Here we go again. I went through the entire day with only one mild attack and that went away in 10 minutes. I was lucky. On my way home from work I thought about enjoying a nice glass of wine with dinner but decided not to. When I'm in a cycle I can't take the risk. But, low and behold, I got an attack anyway. Maybe it was just the thought of a drink. Ha. I got that aura in my senses and within minutes I was down for the count. Wow. This one was a lulu. I read recently here that drinking ice water helps. I filled two glasses of ice water and chugged them down. Well, it worked. At least this time. Not sure if it'll work again but I'm going to give it a try when I get another attack. I expect the next one within an hour after I go to sleep tonight. This beast is a sneaky bastard. It never lets up and always sneaks up. It gets me just when I least expect it. Hell, I was attack free for nearly two years until last month. I knew what was happening and I raced home to deal with it. Zowie! I really got hit. I didn't know about the ice water trick then. All I can say is to give it a try. I dumped that bastard in less than 20 minutes! Maybe it does work. Anyway, I'm not even thinking of a glass of wine again until this cycle runs its course. Ha.
Tom <mombotombo@yahoo.com>
USA
Tuesday, July 05, 2005 at 19:26:39 (EDT)

just found this board and its great,living in texas,but am from england.been here years now,but still have my accent.is the beast genetic?i have it,my sister has it,and her daughter has it? we compare notes.please welcome me.pp
patricia copus <predcoat@yahoo.com>
Bacliff, tx USA
Tuesday, July 05, 2005 at 07:55:16 (EDT)

It is 4:00 am. The clusters are so BAD,I do not want to not want to sleep. In the past 48 hours,I slept maby eight.Iam having 2 or more every 12 hours.Sometimes I think my wife knows how much pain there is,sometimes I ask to die I have had them from about the age 12 [maby].I have tried everything but lythium.PLEASE HELP
Robert Coit Carpenter <AngelaCarpenter@netzero.net>
York, s.c USA
Tuesday, July 05, 2005 at 04:56:41 (EDT)

God damnit. It's 1am and a CH woke me right on schedule. I got up, as usual, paced the floor for ten minutes, blew my running nose (right side), and took a couple of Isoprupin (they don't help but it's physcological). I set the timer to record the duration of this attack. If the pattern holds up, I'll be back in bed in under 30 minutes. But, I have to go through this intense pain until it subsides. It will. It always does. But, it seems the attacks are getting worse as time goes by. I'm into my second month of this cycle. I have to be careful to time my days to side step the sessions. I have to make sure I'm at home to suffer throuh the session. If I'm out in public, I'll take a brisk walk with my head down so people can't see how much pain my face reveals. I'll cry from one eye (my right) and my face twisted look. Oh, I am a big supporter of drinking ice water when I'm under attack. It does help me as well. Also, I come to this site and read comments from readers who suffer like me. That too helps by keeping away from self-pity. Since we can not compare our pain levels, I go along with the KIP scale. My sessions are usually 9/10 in intensity. They come on quickly (usually within 5 minutes) and then gradually go away in about 30-40 minutes. If I'm lucky I won't have back to back sessions, but that happens from time to time. I'll go to work tomorrow and can only pray that I'll get through the day without an attack. It'll be a day full of meetings so I'm really concerned. There's nothing more frightening than being in a high level meeting and go into the attack mode. It's happened before and I can get rather testy. One time my boss pulled me into his office after a meeting where I was really getting hit hard. It came and on and subsided during the meeting. But, my appearance revealed pain. My boss at first chewed me out but when I explained what happened and asked him to check out this site he understood. I didn't get any sympathy but I did get across to him my problem. Well, that's about it for now. Try the cold ice water routine. I don't know if it helps or not, but it seems to. You have nothing to lose accept your pain until the beast rears its ugly head again.
Victor
USA
Tuesday, July 05, 2005 at 00:18:38 (EDT)

Wbat tbe hell is going on? THis cycle is on its 18th day and there's been absolutely no relief. Four, five, six headaches a day and night. Haven't slept more than 4 hours at night. So tired. So tired of hurting. This has got to stop! I don't care if I died right now. It would be better than this agony. Trust me on that. I think I'm at a 15 on the KIP scale right now. I've had no success with any remedies. The passing of time is all that works for me. I'm usually over it in 40 minutes. I'll just sit here and watch the clock until this pain eases. I want to say all the four letter words I know right now to express my anger and pain. It there is a God then I ask him to take this agony away once and for all.
jack <jackcambruzzi@yahoo.com>
USA
Monday, July 04, 2005 at 14:40:17 (EDT)

I'm dying. I'm in a 10+ on the KIP scale. Right this minute. If I wasn't writing here I'd be pounding my head against the wall. My nose is running and my eye lid is down with tears filling it. On my right side only. So typical of this fucking demon. I'm on day 21 of this cycle. Only this time it seems to be getting worse for me. I'm nearly 50 and now the pain is growing with each cycle.
James <mijerbmac@hotmail.com>
USA
Monday, July 04, 2005 at 11:41:32 (EDT)

Just awoke at 1130PM with one hell of a CH. I was in remission for over a year and the last three weeks have been a living hell. 3-5 hits a day. The worst are after I go to bed. I awake with the killer of the day as I call it. I can barely keep my right eye open as I write here. My nose is running and my right side of my head feels like a spike is being driven through my brain. If I can hold on for another 20 minutes I'll be through this for the night and I'll be able to get back to sleep. Fortunately, I haven't had any alcohol for over three weeks. Believe me, if you take one drink of beer, wine or anything else you'll be in for the ride of your life. Alcohol fuels the pain. I tried it more than once. Three weeks ago I had a hit with a CH. After the first day, I took a sip of wine during dinner. Within 10 minutes I had to leave the restaurant, my family and friends and took off walking down the street. The pain was so damn intense that I was crying as I walked. People passing me would look as if I was hurting about something. If I told them they wouldn't understand unless they were one of 'us'. During this cycle I tried something new. When I get a CH hit, I quickly pop two to four Tylenol PM and drink a glass of ice cold water. I then log on here and read comments and start to make my own. I don't know if this does any good, but I have to admit, it cuts the duration of the CH hit. At least I think it does. I'm 55 and am very hopeful that the frequency and intensity of my CHs drops off. I read that it does. I've been living with this demon for 25 years and I'm frankly sick and tired of it. I'm praying that they will just go away and leave me in peace. I think I can speak for all of us in saying that our blight is not death threatening. We just have to live with this thing the best we can. We the CH hit eases I'm back in the world of the living. Hey, my hit is easing! Just like that. I'm heading for bed for some restful sleep I hope. God bless us all. Don't give in to this thing. Fight it and live with it. There really isn't nothing much else me can do.
Kurt <kurt9550@yahoo.com>
Chicago, Il USA
Sunday, July 03, 2005 at 00:49:59 (EDT)

i am 39 year old father of 3 sons ages 10,4 and 4 months.i have been getting cluster headaches for more then 15 years. i did not start gettig treatment untill i was 28,i sufferd untill 1999 when i found imitrex at onset of attack would prevent the headach. it is the only med.that has helped. i was alone in pain for a long time.i can now stop the pain with imitrex injections.
tom mitchell
pgh, pa USA
Sunday, July 03, 2005 at 00:26:19 (EDT)

I've was free of CHs for over a year before they came back a few weeks ago. It was back to the same old routine. The midnight calling to wake me in bitter pain and agony. Tearing in my right eye and nose running. I'm a 10 on the Kip scale when I'm attacked. After about 40 minutes the bitch is gone and I can get back to sleep. I'm okay until 5PM when I get hit again. This went on with regularity for the first three weeks. I abstain from alcohol when I'm in a cycle. If you want to bring the beast alive, just take a sip of anything alcoholic. You'll soon abandone that thought. Well, two days ago, my attacks suddenly changed their routine. I didn't get the 5PM hit and I slept through the night. But, the next morning while at the office I got hit. This was totally out of the normal. The funny thing is that the attack lasted less than 10 minutes. Then it was gone. I got hit again at 1PM the same day and it too lasted only 10 minutes or so. I came home from work, had dinner and got hit again at 7PM and it too lasted about 10 minutes. Is the beast trying to fool with me? I don't know. But, I could live with 10 minute bouts instead of the longer duration hits. I'm hopeful to come out of this cycle soon so I can get on with my life. When I would get hit with a 10 on the Kip scale (my normal attack magnitude) I would nearly go nuts. Aside from crying and cursing my life I even gave thought to ending it all. Get that! Letting this beast take to that brink? I think not. I've lived with this for over 25 years. I'm hanging on.
Kurt
USA
Thursday, June 30, 2005 at 20:03:26 (EDT)

Recently diagnosed, wouldn't wish this on my worst enemy!
Ronna <RJM722@SSSNET.COM>
Massillon, OH USA
Thursday, June 30, 2005 at 11:42:44 (EDT)

I am interested in any treatment that has helped someone.
Richard Curtis <Italiana3@AOL.com>
Vacaville, CA USA
Wednesday, June 29, 2005 at 23:18:45 (EDT)

Hi all - it was amazing to find this place. Even though I have not had a bout for seven years, I cried and cried when I read what you all had to say. I know I'm lucky to have been pain free for so long, but I'm pretty sure they'll be back some day. To those of you who are chronic and have suffered for so long - all I can say is that you are absolute legends to still be here. Your strength is incredible. Mine only ever lasted three or four months of the year, so I at least had the other eight or nine pain free. I don't know why I haven't had an attack for seven years - I wish I could tell you all of some amazing breakthrough, but nothing in my lifestyle has changed. What I do know is that thanks to this wonderful site, I'm ready to swing into action if (when) my wicked witch comes back. I cried when I read some of your descriptions (the beast, the demon, Freddy Kruger). I thought I was the only one who personalised my pain like that! I would not wish this dreadful curse on my worst enemy (even those doctors who misdiagnosed me and told me to relax and think positive thoughts). My heart goes out to all of you, and maybe places like this will lead us all to a cure some day. Remember, you are not alone! Just a thought - how many young women out there are misdiagnosed because of the myth that only smoking, drinking, middle-aged men with ruddy complexions and hazel eyes get cluster headaches? What a load of balls!
Laura Dibbs <laurapep@bigpond.com>
Darwin, NT Australia
Wednesday, June 29, 2005 at 20:52:10 (EDT)

Hi! I accidently stumbled over this website. I have been suffering from Clusters for 3 years. I am currently going through an episode. I am exhausted and very moody. I think my kids are starting to hate me because I get so mean. I was searching the web for some help. I feel lost. Tanya
Tanya Robeson <jansonrobeson@sbcglobal.net>
Chickasha, OK USA
Wednesday, June 29, 2005 at 12:32:41 (EDT)

I was diagnosed (in russia) chronic CH 2 years ago after suffering for 2 years. I did try various treatments as listed by specialists associated with this site and OUCH but with little effect. last year I visited a neuro specialist here in Moscow. After various tests one of which may be crucial in MY CASE it was found that I had blockages in my main blood flow to the brain 50% RESTRICTION IN 20% RESTRICTION out this was assessed by ultrasound. Some minor irregularities were also found on my facial tissue. the blood restrictions were associated with chlorestorel problems which I new about some time before (this "chlorestorel" was a heridary disorder ) I was prescribed the following first two months Sermion and Trental in conjunction with these, I continued Finlepsin for six months (LOW Dose 2half per day 1 full before bed) . I would say that the effects were not immediate although the intensity of pain and the frequency (no. per day)did start to reduce greatly Only perhaps beyond the period of the course (2 MONTHS AFTER) did I find any major benefits. I did have a period of perhaps 3 months free of headaches and have suffered with less frequency and intensity since. I believe i am not the ideal patient for any course of medication so the later relapse may have been consequences my own doing. We do live a particlaur life stlye here in Moscow which I would say is not always conducive to a one, but you should try. Critical to this course was a Low Chrolestorel diet. and Finlepsin, which can not be taken with alcohol. Along with the diet, the alcohol free months and the training i did lose nearly 12 kilogrammes. My point is this. I HAVE READ LITTLE ABOUT MY FORM OF DIAGNOSIS "BLOCKAGE THROUGH CHLORESTOREL" AND THE USE OF FINLEPSIN AS A TREATMENT AND LOW CHLORESTOREL DIET,PERHAPS IT IS AN AVENUE. GOOD LUCK
Douglas
Moscow, mos Russia
Wednesday, June 29, 2005 at 02:47:40 (EDT)

I'm into my second week of severe cluster headaches. The old schedule of two a day has now turned into five to six a day. They seem to be of greater intensity of my previous experiences. It could simply be that I'm so used to the pain that I don't try to compare the pain thresholds anymore. I do know that they hurt like hell tonight. So much in fact that I'm staying awake in fear that if I lay down, they will come again with more intensity. It's a fearful state to be in. I went almost a full year without an attack. Now I'm back in the swing of things with frequent attacks lasting for three to four weeks at a pop.
Tony <tonyr71@hotmail.com>
USA
Tuesday, June 28, 2005 at 20:59:11 (EDT)

Thanks, now I am getting understanding,helpful information and support about this monster!!
Rick Prudhomme <rickprudhomme@comcast.net>
Fair Haven, mi USA
Monday, June 27, 2005 at 10:15:40 (EDT)

hi everyone been a suferer now for 4yrs and its killing me more each day. why wont somebody help us.
darren gaskin <drng67@aol.com>
prestatyn, uk wales
Monday, June 27, 2005 at 08:30:24 (EDT)

Welcome new visitors. Please take a look at the message boards, you'll find lots of info and many who understand your pain. You are not alone! Introduce yourself and let us know how we can help. Pain free wishes to you, nani :)
nani
USA
Sunday, June 26, 2005 at 03:02:13 (EDT)

I've ben suffering from these killer headaches for 27 years. I've tried many treatments, the best I find is Imitrex injections, stops headaches within usually 5-10 min. Prednisone I find stops them, when they really get out of control. I've had as many as 9 per day/night.
Roslyn <judan7@aol.com>
Edison, NJ USA
Saturday, June 25, 2005 at 01:38:32 (EDT)

Hi to all my beloved friends... I feel compelled to write here again to share with you the good news. I'm free at last of all the years of agony and trying to kill myself before "It" kills me. With 20 years of pain I can say "been there, done that"... especially loneliness being the very very few no. of sufferers in this part of the world. Praise God He has healed me and let me out of this prison. For you guys in especially Australia and USA go find out about Quantum Touch (its common there). Its energy work (alternative med/treatment) using resonance and vibration found in our bodies and the practitioner simply runs energy into your body and your body will heal itself. The last attack i had (last year) lasted only 2 days with 3 very very mild ones. All i did was have someone run energy into my neck, shoulders and head at the first sign of a recurring pain. I had this treatment 2 days in a row and got over it. Really hope this info can help some of you. God Bless!
vee <bobnivy@starhub.net.sg>
singapore
Wednesday, June 22, 2005 at 14:05:28 (EDT)

It's 4AM and the beast is back. I want to kill myself but I won't. I'll write here. This sucks so much.
Bobby
USA
Wednesday, June 22, 2005 at 03:50:43 (EDT)

I have just recently got a computer. I was amazed when i looked up cluster headache and found out there is so much information. i have suffered since 1989. i have been seeing a neuroligist since 1991. The first doctor was not very effective. To many pain pills not enough help. The doctor I am seeing now is great he changed my life for the most part. The first thing he did was get me off the pain pills. I use depakote as a base medicine. When they flare up usually once a year now, I start with oxy. when that quits working, imitrex is next then after that predisone. It was very hard to explain to people the pain I was in. Your explanation of cluster headache fits me to a tee. I was happy to read what you had to say. Thank you
Fred Stuckey <fstuckey@surferie.net>
Cambridge Springs, Pa USA
Tuesday, June 21, 2005 at 20:10:26 (EDT)

Hi guy's and gal's, I was here a couple of years ago, Sorry to say MY demons are back, I am taling Verapamile 240mg's 4 times per day, and imogine injector when needed, I was talking with my Doc, and he wants to try me on Lithium to break my cycle ? I have read about the side effects, should I try Lithium, any advise would be really appricated THX dave
david <david.darbyshire@nl.sykes.com>
A,sterdam, Holland
Tuesday, June 21, 2005 at 07:58:47 (EDT)

I've been feeling this ice pick since 1975. Although the time between episodes have increased. I used to get them every 2 years or so but the last one I had was in 97 till last night. What a fucking horror show. I really thought I was over this thing for good. I found a few stray prednisones and took them today and so far so good. Although strangely enough my right temple still feels like an attack could come any minute. I usually don't chime in to support sites but this is the type of suffering that warrants all the support we can get. Most people I know have never heard of clusters, and it's good to know there's more help now then when I first was diagnosed as a teenager. I'm hoping and praying for a one headache episode and then over for another 8 years. At least I don't feel so alone with this.
Michelle G <michsong@optonline.net>
Baldwin, NY USA
Sunday, June 19, 2005 at 21:45:18 (EDT)

A good number of years ago, I read an excellent description of CH written by M.I.K. I've been searching the archives of this site in vain for days. Does anyone know what happened to it?
CH student <rovid1@sympatico.ca>
Canada
Sunday, June 19, 2005 at 16:44:13 (EDT)

I'm 48, and after 5+ years of serious "head attacks" have finally found out what I have is cluster headaches, the chronic type, since I have never gone more than two weeks without an attack. I have tried a few medications, none worked, so I'm back to just suffering through them. I'm glad to have found this site, because if you haven't suffered from these attacks, you really don't know the intense pain that we endure. As they say, misery loves company.
Ken <strattonkm34@msn.com>
Tacoma, WA USA
Saturday, June 18, 2005 at 10:32:04 (EDT)

Hello all again, I am back, my first entry was on April 25, 2004 and is in the Archives. I am one of the few women who suffer from these awful Cluster Headaches. I am now 57 and have never had a remission. Went to my Doctor yesterday (Thank God for Him) to get my imitrex refilled. Imitrex shots and pills are the only things that work for me. He asked me how the headachs have been. I told him I still get 9 to 19 per month. Woke up at 2:30am this morning and gave myself a imitrex shot because if I took the pill I know I would throw it up. Yes, I do get sick to my stomach and have been told that I have CH with migrine. I pray for all of you and hope someday "they" will find a cure. I know I do not want to have this beast in my 70's 80's or beyond. If I should live that long. Sometimes I feel that I will die with one of these Cluster's, they hurt so bad. Take care all of you, I sure do understand. Kathy ps If any of you live in the VA Beach area email me.
Kathy Hooks <katherinehooks@cox.net>
Virginia Beach, VA USA
Friday, June 17, 2005 at 12:32:43 (EDT)

Hello All, I am back, if you want to read about my CH headaches I am in the ARCHIVES now. The date was April 24, 2004 that I first found this site and told my story. I am thankful for the Doctor that I have and have been seeing for the last 14 years or so. I am now 57 and one of the few woman that have these awful Clusters. Imitrex shots and pills are the only meds that work for me. I see the Doctor every 3 months to get my refils. I was there yesterday and he asked me how many I get per month. I told him I have never been in remission and have had them for 20 years now. I still get 9 to 19 per month. They wake me up just like last night or should I say this morning at 2:30 am. I also get sick to my stomach so I take a shot of imitrex because I am might throw up the pill. Yes, I have migrane and and CH. I pray for all of you and hope someday they will find a cure. Please email me if you are in the Tidewater Area, I will give you my Doctors name. God Bless him he understands. Take care, all of you believe me I know what you are going through. Kathy
kathy hooks <katherinehooks@cox.net>
virginia beach, va USA
Friday, June 17, 2005 at 11:09:33 (EDT)

As always, I come to this site when I'm in a cluster cycle. I'm 49 and have had clusters for over 25 years. I found out that they were cluster headaches by mere chance. I was at a cocktail party and talking with a fellow who was drinking only soda water. I asked him if he didn't drink. He said he does indeed but not for a few weeks. I asked what did that mean? Then he told me about these headaches he got. Damn, he described mine to a T. When I told him that, he told me all about clusters and that nothing seemed to work for him. He said alcohol triggered them when he was in a cycle. Knowing now what these terrible headaches are all about I knew I wasn't alone. We moved apart several years ago but we stay in touch. I call him when I enter into a cycle and he calls me when he enters a cycle. We help each other get through the cycle. It doesn't remove the pain but it does help. One thing we do is abstain from any form of alcohol. Not even a glass of wine with dinner. When I didn't know about this bastard of a demon I would happily drink a beer or a mixed drink or a glass of wine and then go almost immediately into hell. I never put the two together. When I did find about the link, I never touch booze when I'm in a cycle. It helps a lot. And, before I go to bed, I take three Tylenol PM tablets. I can usally get through the night, not always, but usually. Well, God bless everyone. If nothing more, we're unique.
jack <jackcambruzzi@yahoo.com>
Miami, Fl USA
Thursday, June 16, 2005 at 19:53:44 (EDT)

I don t even remember exactly how I found this website, but I do remember being in tears the first time I read the, want to know what it s like to live with CH testimonials on the home page. To have found a place where people actually know what I m talking about, and who share the same pain (figuratively and literally), was literally a lifesaver. I have learned pretty much everything I know about CH from here. I m on the medications I m on now because I read about them here. I can t thank DJ and everybody else involved enough. This is truly a wonderful group of people.
Todd A <Todd@digitalfilmphoto.com>
Haverhill, MA USA
Thursday, June 16, 2005 at 18:52:16 (EDT)

My first time hearing or knowing about cluster headaches was 1999. I had suffered from the most dreaded, horrible one-sided headaches for 12 years and taught it was migraine because its hereditary in my family. However my headaches were different from the symptoms others had explained. My headaches did not last days( they lasted 15-30 minutes). They would wake me up out of my sleep especially at nights(3 hours after falling asleep) or in the early mornings at the same time. I would get couple of attacks at the same time each day, i would anticipate them lasting for a month and half, then remit for probably a next 6mths-1yr. The pain was untreatable, uncurable, nothing i took releived it, it was excrutiating, i almost thought it would drive me crazy or killed me, sometimes i would prefer to die than to experience it. However, I've never think of suicide, no one can commit suicide with these headaches, they controll you, your entire body. My thoughts are usually,these headaches are worst than death itself. The good thing is that after an episode, I function normally as if i did not have it, that is when i have fallen asleep is awaken and hs slowly regained my energy. During attacks,i would find the coolest place to lay especially on the floor. I would toss and turn not knowing when i fell asleep. If it does not allow me to sleep, i would strip my self of my clothes because i felt clustered as if i was locked in a little box and needed air, would have a cold shower, dont dry myself, put on thin loosely fitting clothes on my wet body and turn the fan Hi- i am a lunatic at large- but it would make me fall asleep. Eventually after feeling chilly i would wake up, put on comfortable clothes turn the fan off and the headache would be gone. I dont know if its my strategy that had worked, or the headache had completed its duration. Other experiences i go through is that I would pound the temple of the affected side, usually the left side, and also used my thumb to press the upper and inner canthus of my eyelid, another strategy i thought would have worked, but it doesn't, I do it any how. I would roll on floor and pull everthing out of my hair. The pain starts in my left eye which normally droops and tears. The temple of the same side would be extremely sensitive after an episode. I am not an emotional person but i would cry alot during these attacks which brings pity from people. I prefer not being around people during the episodes becuase i have little tolerance for noises, whether its concern or sympathy, I dont want to hear their voices, i dont want them to touch me. The pain is so bad i cant even pray, i cant do anything actually. This might sound unusual but i get nausea and vomiting not for a typical cluster headache, so the doctor diagnosed me as having cluster and migraine together. However most of my symptoms are typically that of cluster headache. Its more prevalent in men, but i am one of the few women who feels it and knows it. I always tell people i would not wish it on my worst enemy. I am usually a happy, witty, full of humour, pleasant and outgoing girl, but when i have these headache i am impulsive, irritable, angry and sad. This is what the pain does to me. I pray that when i start having children that none of them will ever get it. Its good to know that others understand what i am going through as we share similar experiences. Many people think we exaggerate, but he who feels it knows it. Thanks for the understanding of family members and close friends.
nez <rtoflove@hotmail.com>
yonkers, ny USA
Thursday, June 16, 2005 at 15:05:54 (EDT)

Day two of the demon. Up again. Pain woke me. I just have to accept that I'm in a cycle. What else would I expect? After I pace the floor for 10 or 15 minutes, I just grit my teeth and get through the time. It's all I can do. Nothing else seems to work for me. All the doctors are quacks. In the USA, they don't even express any empathy. Oh, you have headaches. Take two aspirins and get some rest. Next. Pay me. Well, go fuck yoursleves American doctors. You don't know shit about anything except making a buck. I ain't paying any of these shit heads a dime. I'll take the CHs in stride, get through the cycle and get on with my life the best I can. I'm used to it now. I know what to expect. I always got through the cycles before and I can now. I just guts it out. Sometimes the pain is so intense I can do nothing except pace the floor and watch the clock. Get me through the next 30 minutes. I can make it. I always have and I'll do it again. Knowing what I'm up against helps a lot. I've gone two years and more without a cycle. Now I'm back in one. How long will it last? I don't know. It could go on for a week, maybe two, maybe three. Well, fuck it. I haven't died yet and probably won't now. I'll put up with it.
Bobby <bobbypopper@yahoo.com>
Atlanta, GA USA
Thursday, June 16, 2005 at 00:04:20 (EDT)

Please, my husband suffer from this and he is taking five pills and it doesn't makes any better. I don't know what to do anymore. It's affecting the both of us. I'm feeling depressed cause he's always feeling bad...worse every day.
Sandra <nativa9@hotmail.com>
Bayamon, PR USA
Tuesday, June 14, 2005 at 20:54:24 (EDT)

Please I am having a headache. My friend told me their is a new headache medication out called Relpax (made by Pfizer).
Marlin-man <edihendrickson@juno.com>
Astor, Fl USA
Tuesday, June 14, 2005 at 12:24:17 (EDT)

hi all, great (or not) to hear of other poor people suffering from this curse. iwish u all well. im in the last week of an 8 week bout.feverfew is the answer. good luck to all.
peter j <pmjacks@hotmail.com>
USA
Tuesday, June 14, 2005 at 06:03:45 (EDT)

Praise Tha Lord For You all! I Have Been A sufferer For over 10 years. I've Tried It all And so Have the doc's. I have been thru so much in my life dealing with this Head of mine. Always splitting up into so many pieces. I would like to help anyone by doing what God permits. I would like any help out there that I can get, my life is a wreck. I can't be responsible to my wife and childern in a important way, financialy. God bless you all
Kenneth <Keyonnalew@msn.com>
Bryan, Tx USA
Monday, June 13, 2005 at 18:06:18 (EDT)

Greetings, I have posted here before, but thought I should update you on some important information. I have suffered with CH's for over 20 years. The condition seem to escalate over time, with increased severity and frequency. I've tried every abortive therapy available and the only two that have ever been effective for me was Imitrex Injections and Butorphanol (Stadol). My last "season of pain" lasted 7 months during which I had 417 distinct CH's. The last Neurologist that I saw looked over my list of failed medications and immediately wrote a prescription for "Seroquel". I was peaking in the cycle at 7 to 9 headaches a day, and they stopped as soon as I took the first Seroquel tablet. This is the first prophylactic treatment that had ever worked for me. Seroquel is used to treat schizophrenia and helps regulate the Serotonin, and Dopamine 1, and Dopamine 2, receptors in the brain. After suffering for 20 years, there is hope back in my life. Ask your physician or neurologist if Seroquel might be appropriate for you. Good Luck!
Knight
Oregon USA
Friday, June 10, 2005 at 18:09:52 (EDT)

Thank you for the very imformative site...My father suffers severely from cluster headaches and I feel so helpless...I was trying to find some kind of remedy or some other options he may have in trying to subside them. I realize there isnt a cure, but getting him some relief would be great. Thank you again...:)
Sharon Sierra <sharonsierra7@cableone.net>
Rio Rancho, NM USA
Thursday, June 09, 2005 at 00:00:53 (EDT)

They're back!!!!!!!!!!! Its going on 6 years now. Last October I started taking Verapimil it seemed to work. The CH this time are shorter in duration and they happen every few days or so. Thank God. Back to the ice packs on my neck and head banging. My co-worker finally saw me with a CH and she was very helpful and understanding. It made me laugh, she immediatley went and got the ice bag I keep in the fridge, LOL. Good luck to all my fellow sufferers, we will conquer this beast some day. Ciao
Benjamin <bennystpete@yahoo.com>
St Petersburg, FL USA
Wednesday, June 08, 2005 at 08:20:18 (EDT)

hello cluster heads! I'm a 19 year veteran. At age 42 this game is getting harder and harder to play. dhe, prednisone, stadol, neurontin. theyr'e all getting sick and tired of playing too. I think they have all given up. But not me. I'll keep on for now.
susan ruwwe <sruwwe@kc.rr.com>
lees summit, mo USA
Tuesday, June 07, 2005 at 22:24:16 (EDT)

Hi all, I have been a CH for about 10 years (57 yo now) now. When first diagnosed the doctor said I may be lucky as usually one outgrew them with age "right". My cycles have usually been 3 mos on 6mos off 3mos on. I have been on all of the recommended medications, now taking for prevention lithium, topomax and verapamil. To abort have imitrex nasal spray and injection and have Oxegenator. I am currently in a four month cycle and am having 3 to 5 attacts a day. Like everyone else the ones that wake you up in the middle of the night are the worst and last the longest. My head is so sore from beatin it with my fist I can hardly touch it. Here in B'ham the humidity has been at it highest and I cannot help but believe that has something to do with my cycle, but of course no one believes me, but you know how your mind (what is left of it) begins to play tricks on you. The headaches have gotton so bad and so frequent at night my wife has been sleeping upstairs so at least she get get some rest. For those of you that have, thanks for reading. It helps just to complain to others that suffer from the Demon.
Ernie Moss <ernie@abshop.com>
Birmingham, Al USA
Tuesday, June 07, 2005 at 18:02:32 (EDT)

I am back. But not on a bad note. I have been in remission for almost 4 1/2 months. No Clusters! Thank god! & Thank Verapamil! I know that someday they might be back. It seems that they always return. So for all suffers be strong. Keep the faith. Remember that you are not alone. God Bless!!!
Bob Goodman <begood28@msn.com>
Brooklyn , NY USA
Tuesday, June 07, 2005 at 12:39:21 (EDT)

Our daughter has had Clusters since 1989.Her Clusters moved from the Eposidonic to Chronic about 30 days ago. She started with one every night about 30 days ago, now they happen in the afternoon/evenning every day. She has monitored the Message Board for some time. My question; Who are the TOP rated experts in the Cluster field and who,where are the best clinics/ hositals???? We have met with a couple of seriously overrated experts/clinics/ hospitals. Where ,how can we find the best most effective ones??? Thanks, Lyd
Lyd <j-lpryor@sbcglobal.net>
Traverse City, MI. USA
Monday, June 06, 2005 at 17:43:30 (EDT)

Thank you so much for having this site on the web. I have been suffering with these headaches for the last 5 years without any validation from my family physician. Reading about the eyelid swelling--pain behind the right eye --has clinched the diagnosis for me. I had asked the doctor if this is what it could be and he said no. I also get a burning in my right nostril at the same time. It is not uncommon for my headaches to last hours and hours and continue for days and days before I get a reprieve. I often beat my head on the right temple area. I have noticed that hyperventilating helps a bit but All I have been told to use is over the counter things like ibuprophen. Thank you for at least letting me know I am not totally a whiny wench. Aleka
Aleka <alibi001@charter.net>
Centralia, Illinois USA
Sunday, June 05, 2005 at 12:03:44 (EDT)

Hi Folks - I'm 57 years old and had my first attack at age 20. It took 25 more years to get it diagnosed. I had clusters from 1 to 4 times per year. A great neurologist gave me Prednisone and Sansert. Heavy duty drugs, but after treating me that way for two clusters, I went into remission for over 10 years. Well, as of this week The Beast is back. I get one attack around 6PM each day. I have lingering pain the rest of the day until the cluster is over. I haven't been to the Dr. yet, but hope to get in Monday. I just tried something and want to share it. I was about 10 minutes into an attack and feeling rotten, but I put down a yoga mat and did 25 situps anyway. I got up and went into the kitchen to glass of water, still hurting and then BAM! It just stopped. Immediately, just like that, to the point where I said out loud, "what the hell?". So I went back and did 25 more situps. I feel The Beast lurking, but I'm not in attack pain mode. I might do some more situps and see what happens. I will report back. If nothing else, I'll firm up my abs! Rob
Rob Lance <roblance@comcast.net>
Columbia, MD USA
Saturday, June 04, 2005 at 19:00:05 (EDT)

I'm thirty one years old and had my first cluster headache on April 20th 2005. I was diagnosed with CH's one week ago. They have been intensifying since. When my awesoume wife and I found this website we both cried like babies. It's almost hard to imagine going through this for the rest of my life but the pain makes it beleivable. You know what I mean. It has been seventeen hours and twenty minutes since the last one. Does this mean I am in remission? Someone please let me know! I'm scared to death of what is going to mean for the rest of my life. Thank God for my wife. I'm so very happy I found this website. Thanks to everyone who takes the time to share.
frank salyers <fsalyers@utilityservice.com>
wheatcroft, ky USA
Friday, June 03, 2005 at 00:14:52 (EDT)

I am a 36 year old Mother of 3, and I have suffered from headaches since I was very young I remember being 4 years old and having a migrane headache that was so bad I just wanted to die. The vomiting and the pounding was so intense for such a little girl "How could God let me hurt so bad" I thought to myself. As I have grown older I have been in 4 car accidents in which my head broke the windshield in all 4. I have come to experience not only headaches that generatefrom the base of the neck due to injuries from the accidents but muscle tension headaches as well. Feeling a migrane coming and knowing what is about to happen is something that cannot be explained and/or understood by anyone only those who have suffered from one. I am currently experiencing a headache that I have had for about 2 weeks now. I have taken 4 imitrex shots in the last 5 days, not to mention Vicodin, zanaflex,midrin, and anything else I thought might help. The most relief I can get is only temporary, and the pain never actually goes away it only subsides for a short time. Cold washcloths on the forehead and on the base of the neck, dark quiet rooms, and a trashcan are my best friends, especially with migranes. My hope is that someday there will be a cure weather it be a food, an excersise, or even a prayer. My final thought to whomever may read my story is although I do not wish any type of headache on anyone, It is nice to know I am not alone(even though it doesn't make the pain go away!)Someday there will be an answer, but what to do until then????
Tammy <Rockse13@comcast.net>
Indianapolis, In USA
Thursday, June 02, 2005 at 22:53:13 (EDT)

heynow, well it started 11yrs ago. I had what I thought was a bad tooth, emgy room every attack, this doc (after 3-4 times there in a week) doc said oh you have clusters, go to this headache,. nuro doc. man I swore it was a tooth thing. went to oral surgeons. x-rays and all. so went with this cluster #%*@ docs "like well try this try that" man my memory, my thoughts , my brain is all fried now after 11yrs of meds. I think ive taken most meds for the monster pains that start on my left side of my neck at the base of my skull and travels up to thruoght my jaw up to my left eyeball. Always in the same spot, like a searing pipe going through my eye and out the back of my skull. Left side, left side only. In the beginning prednisone, o2, and some other meds also I went through the maxsalt, amerge then stuck w/trex tabs but too long a wait so went to injections. For 10yrs now that has been the choice and the only choice that I find works for me. Cronic clustics every year lasting as little as 3 months and as long as 13 months. I am so glad I found this website. Could talk for hours about this. And will in the future as I am a newbie to this site but not to clusters. I feel for people who suffered b-4 imitrex came along. I feel imitrex is screwing me up from being on it for so many years.
jim bronner <heygirlsup@comcast.net>
chicago, il USA
Thursday, June 02, 2005 at 21:14:40 (EDT)

Hi Everyone. I stumbled across this site and read it with great interest. I have been a sufferer of this dreaded curse for around 20 years! For probably the first 10, I went undiagnosed. Prior to then I did not recognise the cycle and just thought I was suffering unbelievable headaches. I was sent for scans, then to a nose specialist and finally to an eye specialist who correctly identified the "Cluster curse". I am "lucky" my cycle "only" lasts for around 4-6 weeks every 2 years and generally have no more then 3 attacks per day. Since diagnosis I have tried oxygen, acupuncture and drugs with limited or no success. As each cycle ends, there is nothing that can be done until next time. My "next time" has arrived!! 6 months later this time then my "anniversary", but nevertheless it's back. Previously, I have tried the evil drug Prednisolone. Too many side effects for me, including hyperactivity, increased appetite and the feeling my heart is about to explode thru my chest while I'm trying to sleep. This time though I believe I'm on a winner!!! Firstly as a relief from an attack, the Imigran Nasal Spray is a godsend. Relief in 5-20 minutes. Fantastic. As a preventitive, I was prescribed Verapamil (Isoptin), but on it's own was not successful. However, with the introduction of Deseril (Methysergide) as well as Isoptin I am almost headache free!!!!!!!! It has only been 4 days on Deseril, but following one of my worst ever attacks 5 days ago, and then the introduction of Deseril, the improvement was almost immediate. I am sure we are all familiar with the ever present "dullness" during the cycle which develops into an attack. With Deseril this dullness was initially present, but amazingly at the time an attack would normally occur, I could feel a battle raging in my head, but the cluster was prevented from developing. I have only had a couple of "minor" attacks and they were quickly erradicated with the nasal spray. In the last 24 hours I ahve been attack free!!! Fantastic. A major breakthru. In my case the side effects are minimal, but I believe Deseril needs respect. I only have slight light headiness, otherwise nothing. I am optimistic of now beating this terrible affliction, and feel I am now armed with an effective weapon against it. The Nuerologist was Dr John King from the Melbourne Private Hospital consulting rooms. He was extremely confident and believed the treatment would be successful. He was right. But I am sure all Cluster Headache sufferers become quite pessimistic about any "cure". Hope this helps. I know that not everyone responds to the same treatment, but hopefully this may assist others who have not yet tried this treatment. Good Luck.
Brian James <beepeejay@hotmail.com>
Melbourne, Vic Australia
Thursday, June 02, 2005 at 15:12:24 (EDT)

I would like to talk to people who understand my pain because no one understands. also i'am a female not to many of us.
stacy <staycsdream@yahoo.com>
massillon, oh USA
Wednesday, June 01, 2005 at 17:23:52 (EDT)

I just happened onto this site, and only wish that it had been available twenty years ago, when my pains started. Thankfully, I've been pain free for 10 years now, but if anyone tells you that you can't remember pain....they're wrong. I was fortunate that my doc was both a neurologist, AND a psychologist. He diagnosed me correctly, and showed me the copy in Wolfe's Headaches that read as if I had written it. He also was relieved, as I was, to tell me that I wasn't suicidal. That still didn't keep my wife from hiding the handgun. There are more treatments now than then, all I remember is Ergotamine, which never worked for me. I never wanted to do the oxygen thing, so there were only a few drugs that were offered...none that relieved the pain. There was one thing that did help, not after an attack, but if I felt one coming on. I used the "gate theory" explained in detail at: http://www.clusterheadaches.com/docgreg.html I used "brain freeze", or large amounts of ice cream, shaved ice, anything cold enough to cause some pain. That kicked in the gate theory and would sometimes stave off an attack. Just one note: It CAN end. Have faith and keep a positive attitude...I know that's very difficult, but hang in there. Good luck to all of you.
Bobby Knight <bknight@onramp.net>
Dallas, tx USA
Monday, May 30, 2005 at 12:19:13 (EDT)

Cluster sufferer for 21 years (I'm 37, started at 14), have been pain free for the past 2 years. But the devil is back, and he is angry. Tomorrow is the start of the 7th week. I'm afraid to go to sleep. My wife went to sleep at 8 pm tonight, she's exhausted from watching me get up and walk out of the bedroom every night. I knew other people suffered from this, but I'm glad to have read the info on the site, as I'm finding some comfort in numbers. Will try water and O2 to see how it goes. Will also stop consumption of chocolate and cigars until the devil goes away. Tried topamax for 6 days, but it made it worse. Good luck to all!
Jose <marlinsfan_88@hotmail.com>
hollywood, fl USA
Sunday, May 29, 2005 at 22:26:09 (EDT)

Hi all, I have read a ton of these and my story is no different. I have fought with this beast for 18 years now. I feel like I have taken everything under the sun. I am now at the first day of week six, they have never lasted this long before. Thank God for O2, that has kept my $$ down and has been about the only thing that seems to work. I am now praying for each and every one of you, because I thought I was alone. In the name of my savior Jesus Christ, Troy
Troy Hobelmann <sabumnimhobelmann@yahoo.com>
Emporia, KS USA
Sunday, May 29, 2005 at 08:33:16 (EDT)

I am 42 yrs old had CH since 15. I stumbled on your sight and glad I did. I'm in the cycle now it has been a week now hoping and praying it willend soon.Agian glad I found you,and glad your here.Also in reading the letters of symptom the stated that you don't vomit I do even water comes up.is crazy thanks again
Michael Morton <quality-service@sbcglobal.net>
sauk village, IL USA
Sunday, May 29, 2005 at 01:15:48 (EDT)

i am so glad to have your website to visit when i am in the middle of a cluster series. i am so depressed, that imagining others with the same problems helps me to feel less suicidal somehow. nobody else can possibly understand.
christine <joweav@comcast.net>
turnersville, nj USA
Saturday, May 28, 2005 at 09:43:20 (EDT)

Its been about six years since my first encounter with this nightmare we live. I have been diagnosed with CH but doubt this at times because my symptoms overlap into headache areas too. I do know we all have one thing in common though a pain free day is a blessing that can not be ignored. I have tried nearly every drug known to man with little to no success as well as other methods. Out of the last six years I have learned one very important lesson Beware of narcotics I know they work for alot of people, they work for me at least better than most things I have tried. But with my ignorance and the help of some doctors I became physically dependent but in my file with these doctors I am considerd an addict and believe me there is one hell of a diffence. One brillant doc (after i detoxed from vicodan a living hell in itself) prescribed methadone 20mg 2 a day for almost 18 months. although it was the most successful drug i have tried it has also casused some of the most devastating months of my life. I remember asking this doctor if i would have any problems with physical dependancy or withdrawls from Methadone. His response was NO this is what they give opoid addicts to help them get clean. Needless to say I never take any new meds prescribed to me without doing my own research first. A Hard lesson learned. The reason I had to stop the methadone was when I moved from my home state to CA I found out that in most states any old doctor that doesnt know what he is doing cant presribe methadone. Some states will let their doctors do anything. Well thank you for letting me vent i hope this saves someone from haveing to go through the added hell of dependancy it is hard enough to face most days as is. My best to you all and I hope everone here finds their own cure soon. I know mine has to be comming soon.
shawn k <keltcast@msn.com>
Yucaipa, ca USA
Thursday, May 26, 2005 at 03:55:25 (EDT)

imitrex AND zomig are overrated.... i have relied on h20 and duradrin. potassium enriched water and diet have been the best answer.
jl <jl@hotmail.com>
johnton, ny USA
Thursday, May 26, 2005 at 01:21:33 (EDT)

I am hear today therefore I have been blessed. Don't give up.I've tried all the meds posted.21 years of,well lets call it my journey. Next week I go to the Marshfield Clinic for the first time. Please pray for me.God bless us all.
aaron kemnitz <shiterapper@yahoo.com>
fonddulac, wi USA
Wednesday, May 25, 2005 at 15:56:49 (EDT)

Hey Ya'll, I have been suffering with the curse since 1985. The first 5 years I think I tried everything that has ever been used for clusters. I found imitrex about 10 years ago and it is the only thing other than oxygen that has ever helped. After almost a year and a half in remission, my current cycle started about a month and a half ago. I just thought I'd do some surfing this morning and see if I could find any new information or treatments and stumbled across this place. I was told about 10 years ago that most sufferers "grow out" of clusters in their late 50's, well, I just turned 58 and I'm now wondering what part of your late 50's that person was talking about!! I had 6 attacks between 6pm yesterday and 4am this morning. Don't know how much longer I can hold up and still work. They got so bad in 98 that I attempted suicide twice within a 2 week period!! I just keep hopin there will be a breakthrough and we'll all get permanent relief from this HELL we all go thru.
Denny Pohlenz <dpohlenz@ghnonline.com>
Dallas, TX USA
Wednesday, May 25, 2005 at 08:20:58 (EDT)

hi everyone:have had the devil inside for 18 years and i'm 38 now.can't seem to get the doctors up here to help.tried evey med known to man but still no relief.o2 helped but has since stopped.starting to lose hope and job soon to follow.anyone have suggestions?
brad <bbradley005@sympatico.ca>
toronto, canada
Tuesday, May 24, 2005 at 09:49:47 (EDT)

Good afternoon, It's 4:40 pm and it usually comes around 5:30-6:00pm. I just got back from seeing a neurosurgeon and he suggested this site as a source of knowledge. He has prescribed 6 different medications to be tried over the next 2 weeks. I'm hoping I hit on one that works. So does my loving wife, who bears my wrath when I can't take it anymore. I've said some pretty hurtful things to her in the middle of the headaches. Glad to know I'm not alone. Kevin
Kevin <jnkbarry@aol.com>
USA
Monday, May 23, 2005 at 16:35:05 (EDT)

Hello All. Let me just say that you all are very brave people for everything that you go through. My fiancee is a cluster sufferer and I am his supporter. Night after night I hear the misery inside of his head and although I don't feel the pain I do understand and do whatever I can to help him. We live near these really high voltage power lines, does anyone else live near power lines? I feel that they are the cause of the episodes and I want to hear from other sufferers about the geographical areas that they live in as well.
Alicia Chrystal <aliciachrystal@financial.wellsfargo.com>
Johnston, IA USA
Monday, May 23, 2005 at 14:30:55 (EDT)

Hello everyone,I'm new the site but but not to CH. Suffered chonic CH,s ten years 2 and 3 a day everyday,rebounds, every doctor, clinic and enough med to kill two hores from new jersey to california to texas. Qualitied for surgery 10 yrs ago. Left side of my face is completely numb. Now THE BASTADS ARE BACK ON THE RIGHT SIDE. Is there a plan B?
Terry Trovato <trt563@aol.com>
west palm beach, fl USA
Sunday, May 22, 2005 at 19:30:32 (EDT)

Hey, I been battlin the beast since I was 18, now I am 42. how much longer I can stand this I not sure but the 18-20 months without are worth it. Keep up the fight
allnight9 <wiggins4@insightbb>
pekin, il USA
Saturday, May 21, 2005 at 10:30:10 (EDT)

I am really impressed about this website, and I must say that I happy also to know I´m not alone and that are people (besides my doctor) that can understand what I go through every year. I suffer from CH since I it´s been years old,it´s been t was years ago that my doctor find years now, but it was just 5 years ago that my doctor find out that we were not dealing with a simple migrane, it was IT, the CH. I tried many drugs and oxygen therapy (believe it or not) is the most effective way to make the pain go away, somentimes it does not relief promptly (in the first 20 minutes of use) but it will leave me on the next 20 minute session of. I´m also trying some prevention drugs, did not do well with any, but I´ll keep trying as long as this hell keeps finding my head. Thanks for sharing and hope we all (CH suffers) live better as doctors and cientists do their best in searching.
Luciane Vincenzi <lucianevincenzi@hotmail.com>
Porto Alegre, RS Brazil
Wednesday, May 18, 2005 at 23:02:38 (EDT)

First of all, thanks for this site. It has helped my wife have a breakthrough about my suffering. When she found the site and read more about others' stories, she could empathize with me all the more. Second, my brief cluster saga: I have suffered from clusters since I was 27, and am now 53. I think I have had around 700 headaches of the "very painful" to "Will this pain kill me?" variety over the years. Nothing has worked. No need to elaborate. My last cycle was October to November 2004, and was the worst yet. Usually won't get them more often than one year apart, and have gone two years sometimes. Have had about 20 cycles in my life. Third, my new sad news is that now I have Parkinson's Disease, which is worsening now since the diagnosis (five months ago). Tremors in left leg, left arm and sometimes (now) whole left side. Footfalls, gait is worsening, some trouble swallowing, impotence creeping upon me, etc. Fatigue, memory lapses, fear, etc. There are about 20 symptoms, most of which I am experiencing. So, my question is: Is there a connection between the brain-addled pain of a lifetime of cluster headaches and getting Parkinson's Disease? If there were a connection, then more Cluster sufferers would be ending up with Parkinson's. Is this happening? That's what I curious about? I have a "pet theory" that the clusters helped "damage" the substantia nigra in the mid-brain which produces dopamine (all parkinson's folks lose the capacity to produce dopamine in the substantia nigra, but no one knows why or how, yet. If anyone who reads this has some thoughts, please let me know. Thanks.
Rob Sherwood <metta69@earthlink.net>
Washington, VA USA
Tuesday, May 17, 2005 at 13:08:17 (EDT)

Hi everyone, it seems ive been suffering from 'cronic' clusters since i was 18, that's five years ago and until right now my Doctor told me they were migrains. He also said that clusters and migrains were basically the same thing, today (after waking up at 1 this morning with what i'd call an '8' on that OUCH scale) i thought i would read up a little more on the headaches bacause after a good winter with not many headachs, in the last few months they seem to be getting more frequent. Night attacks were usually quite rare for me but again ive had a few of them in the last week, so - long story short - i glance over the cluster headache section and it discribed my headaches totally, i couldn't belive it! the thing is, now after finding these sites a reading some of the horror stories im getting scared, i can handle my headaches, my Doctor gave my beta blockers which did nothing but i seem to get as much time without headaches as i do with them - and of course you dont worry about them so much when your not getting them, also my headaches are ALWAYS 20 to 30 mins, never hours and although ive been to '10 Town' once or twice, usually they are '5' or '6'. It seems this can change quite easily however, from what i've read this time next year i could be getting 7 'force 10' cluster headaches a day for the next four months. ok thats at the far end of the scale and very unlikely to happen but still you can't help thinking it can you? tell me people have your clusters changed pattern and/or severity often in the years you have suffered from them? i wouldn't mind knowing what im in for....
James Leadbeater <jamesleadbeater@hotmail.com>
Leeds, England
Tuesday, May 17, 2005 at 10:21:47 (EDT)

hoped i would never be on this site again,but always new i would be, I,m 41 years old had clusters since late 20s,last ones were about 4 or 5 years ago,actually thats a lie had 2 small ones last week and a real belter about an hour ago did 2 shots of some old imitrex injections and thank god it got rid of it.If i get another one tomorrow its back to the neuro and another month or so of hell.I,m sure what i,m going to say is going to piss off any doctors reading this but 4 years ago when i had the last attacks they were real killers,every night they were good 10s lasting 2 to 3 hours and i was at the end of my tether finally they went -what agreat feeling when you know they are leaving.Anyway about amonth later i got hold of some magic mushrooms(i had read a lot about them on various sites)and anyway its been four years instead of once a year like clockwork,and yes as soon as iget chance i,m gonna get some more. I know it doesnt sound right but i know what you people are going through,best of luck to everyone get well, sincerely Ian
ian fox <foxroofing@aol.com>
Sarasota, FL, fl USA
Monday, May 16, 2005 at 23:58:56 (EDT)

Began with CH at the age of 40. Still trying to figure it all out.
Dawn Yovino <bdyrn64@yahoo.com>
Wilmington, DE USA
Monday, May 16, 2005 at 21:39:43 (EDT)

Hi, my name is Veronica. I myself do not suffer from these terrible headaches, however my boyfriend does. I can't describe how hard it has been to watch the man I love so very much be in so much pain, & not be able to do anything to take it away from him. Every time one of these episodes starts I just think to myself, "I know it's the worst pain ever, but if I could take it from him so he doesn't have to suffer anymore, I would". I've tried to massage his neck & shoulders, massage his scalp, "squish" his head (which seems to help my migraines), do the cold compress on the neck, rub the temples, lots of prayer, lots of pain meds (that only work half of the time), & really pretty much anything else we could think of to try to relieve the pain, even including holistic healing. You'd be amazed as to what has worked at times for us. Then again, I'm sure everyone on this site has tried just as much, & more, to try to escape the pain. We were so happy to find this website & the support of everyone here. I've been moved to tears reading some of the stories about what people go through, knowing that my wonderful boyfriend has suffered in some of the same ways. I feel so helpless, because I can't fix it for him. Knowing that I can't make it go away, & I just have to watch him suffer, is just so hard. Hopefully we will be able to find answers that will help from some of you kind folks. Thank you for being here.
Veronica <Veronica180@aol.com>
Orange, CA USA
Monday, May 16, 2005 at 12:53:49 (EDT)

Hi, names Ian and Ive been a sufferer since 93. they come every 18mths to 2yrs and last for tree weeks every time, the second week is always the worstwhen they get to tree or four a day. I sat with the only other sufferer i know on day (we are both bikers)and came up with this discription. "Split head open with an axe - pour in petrol and set alight - wait a few minutes then plug into the mains, switching on and off intermitantly". we both agreed on this but folks can,t seem to get thier head around it. I am lucky to have a great Dr. who understands. I now use Rizatriptan which is vrey good and ,if I get it down early enough, work very quickly. i am going through a priod of attacks at the moment, but they seem a little milder this time. Im at eight but not reached nine so far. best to all, Ian.
Ian Kayley <iankayley247@hotmail.com>
Keighley, w. yorkshire england
Monday, May 16, 2005 at 07:50:05 (EDT)

Is there a ques./answer forum? My husb. has been a C.H. for 35+ yrs. and is having the worst clusters he has had in yrs. I have some ques. about oxygen, rebound h.a.'s from Initrex and prednisone. Any help would be appreciated! Thanks!
Melanie Erxleben <merxleben@gru.net>
Melrose, Fl USA
Monday, May 16, 2005 at 07:27:12 (EDT)

Hi ive been suffering for 6 years now and i keep telling myself i should be used to this by now.But its so destroying i know i will never get used to it.Im sure im not alone in wishing i was dead when im having these attacks.The doctors wont do anything and even the neuroligist refused to give me a scan and said i would just have to live with it.I Would like to see him live with it.If anybody has any solutions please let me know
Conrad <conrad@peck7837.freeserve.co.uk>
uk
Sunday, May 15, 2005 at 15:50:17 (EDT)

Has anyone tried time-release Verapamil? 720mg. per day? Madaline
Madaline
USA
Thursday, May 12, 2005 at 20:38:28 (EDT)

42 years old and i've been suffering from cluster headaches since i was 16. Sometimes they disapear for a year or two at the most,but alas they are back again with a vengance and i know that i'm in for three months of sheer torture. Because i'm a smoker they wont allow me to have an oxygen cilender in my home so for the last three years ive been taking Sumatriptan succinate,it does help to a certain degree when the attacks occur but i have found nothing as a preventative so far in 26 years.
Dave Stewart <davestewart42@hotmail.com>
Glenrothes, Fife Scotland U.K.
Thursday, May 12, 2005 at 13:41:28 (EDT)

i have been on this message board before,and gained nothing. this has to be my happiest day of my life,i have been suffering with this nightmare for 5 long years, i was currently in a five month cycle,6 to 8 headaches a day, ready to end it all when i read about mushrooms for clusterheadahes, magic mushrooms in a small dose completly ended my headaches, i am furious at these asshole docters that know that, but do nothing to try legalize it for extreme cases, the side affect thing is a bunch of bull. to all of you sufferers out there my advice to you is try it you won't believe it,good luck to you all.
jerry <sebatian642001@yahoo.com>
verobeach, fla USA
Wednesday, May 11, 2005 at 11:56:18 (EDT)

Three years now...Dreading the initial uncertainty and foreboding onslaught of symtoms I know all too well, but can't help but try another stab at denying the reality... The beyond pain un-real that's all too real... No! No. No... Will not, can not deal. Not even capable of any of that as such as...Well...Simply: my body doesn't have the sensitivity, nerve threshhold, etc. to "go there" and I simply cannot conceive of anything as such. Would throw myself before a train.Long walk/short bridge so... No. thank you, Still alive-if you'd call it livin'- Til all I've left is no right side of my head etc. thanks love peace out B.C.
Brian Alexander Craig <thoroughlythrough@yahoo.com>
L.A., ca USA
Wednesday, May 11, 2005 at 10:34:21 (EDT)

Hi. I am 55 years old and started having CH about 5 years ago. They are always on the left side. I just started another episode after two years CH free ( I thought they were gone for good). I work in a hospital so I have an unlimited supply of oxygen, which is my life saver. I don't know how all of you that have had CH for many years have made it. You are in my prayers. This site is great!
Mike Mote <MichaekMote@cox-internet.com>
Pineville, La USA
Tuesday, May 10, 2005 at 20:10:58 (EDT)

I have been suffering from clusters since i was a young girl about eight or nine, when i was in sixth grade they though i had eye spasms, and i went to lots of doctors lots of different diagnoses until someone said, hey you got clusters. I went from episodic to chronic. its so chronic its a point where i cant go to school or work. it suxs. either the medication works and then doesn't work or im allergic to most of them. im glad to have found a place on the web where i can read about other peoples experiences. i went to a shrink for help and they are no help because they havent had people with this problem.
Jo <meatballheadjo@yahoo.com>
Bronx, Ny USA
Tuesday, May 10, 2005 at 05:27:01 (EDT)

I've been suffering with clusters for over 10 years now. A change in life style has helped some, I don't get them as much as I used to. The hard part about that is the fact that you become complacant about the pain, and when they hit, it snaps you right back to the first one. I'm in a new relationship and she has been subject to a few of my episodes, I don't know how well she is handling it. She tries to be supportive and to do things to calm me, sometimes it helps and others...well I just want to put my head though a wall. I have learned about a medication called Relpax, if anyone has additional information, please let me know if it works. I've done the prednisone thing and have tried a few others, but no luck. Thank you for this sight, I know I'm not alone. Chuck
Chuck Ulibarri <cgu914@comcast.net>
Aurora, CO USA
Friday, May 06, 2005 at 17:57:20 (EDT)

Hi, my name is Jennie, Well i'v not had a life for 5 years. I work hard I come home to rest i get a headache you would not believe(how yes you would i forgot) Please some-one out there tell me why, i'm not a bad person, i'm nice when you get to know me. i just want to get rid of them. i want a doctor to know what i am going throu, and i have just moved and have a relly nice doctor who told me to go on this site.he said i would have to pay a fee but trust me if it is going to give me a life i will try it
jennie bessant <jenniebessant@hotmail.com>
christchurch, dorset england
Thursday, May 05, 2005 at 17:42:48 (EDT)

i would relly like to know if peaple out there are going throu the pain and the No life that i have, or am i being taken for some-one that wants a day off work becauce she cant be asked. me i just want a life!!!
jennie bessant
christchurch, dorset england
Thursday, May 05, 2005 at 17:27:03 (EDT)

Hello, My name is Gary I am a chronic cluster person. I get spring and fall attacks with remission in the winter and late summer. I will post more messages. I do want to say Thank god I found this website. I felt a wave of emotions wash over me as I've briefly read some of the articles in this site. Its so hard to even begin to explain to others what I feel, I think I have found a new home. Anyone with information related to this website please feel free to e-mail me with info. A small part of a slipknot song, the name of the song is called Duality. I push my fingers into my EYES its the only way to slowly stop the ache, how long will the pain go on? I am not gonna make it! Jesus It never ends as it works its way inside, if the pain goes on I'm not gonna make it. (end of lyrics) I do want to add a special thanks to my lovely wife who has supported me thru the years, Thank You Cathy I love You. Also all the other spouses/partners of CM suffers your support is sometimes the most valuable thing that helps get your loved ones thru these unexplainable times.
Gary F. Williams <Zultarsuperg@yahoo.com>
Albany, Or USA
Wednesday, May 04, 2005 at 23:47:04 (EDT)

I am glad I finally found a site that recognizes the pain of a cluster headache. I was afraid that my next consultation would be a psychiatrist since the MD's around here have no experience with this affliction. Thanks for the site. Tom
Tom Dozier <atdozier@wfeca.net>
Marianna, Fl USA
Wednesday, May 04, 2005 at 01:28:50 (EDT)

I had cluster headaches from the age of 18 untill approx. 33 years of age, sometimes everyday (during college) and then they drifted to a 3 month period during the early summer months then subsided all together. I am now 43 years old and to my horror they resurfaced 2 weeks ago. Now however they are more intense and I get them 2 a day, in the middle of the night, first thing in the morning or whenever they feel like striking. I remember in college they would not surface if I was drinking...that no longer works. I remember before once I had one I was assured not to get another for at least 3 or 4 days...no longer. When I last was afflicted by this insidious beast there was no such thing as Imitrex...after one week of hell revisted I got some...IT WORKS...my only fear now is heart attack due to restricted blood vessels...it cant be worse then Clusters!
Eric Gschwind <egschwind@houston.rr.com>
pearland, Tx USA
Tuesday, May 03, 2005 at 18:48:13 (EDT)

Hi and thanks for this web site.I have been having headaches for about 5 years. Very short but painful. I fear that my headaches will become as unbearable as some of the messages that I have read. I only heard of my headache as a "cluster headache" last week. With not much more information from my doctor. I have been set up to have a CAT scan on the 15th. I thought finally help but reading this site has really frightened me, as to what to come from these headaches. All the symstoms that are described are exactly what I have so there is no dout that I have cluster headaches, just not so severe yet! Thanks for this site Chadina
Chadina Carter <Chadina@hotmail.com>
Douglas, GA USA
Tuesday, May 03, 2005 at 02:20:14 (EDT)

Hello, everyone. I have been an episodic sufferer since I was about nine years old. I'm forty three now. I guess the biggest obstacle, besides the obvious pain, is the lack of understanding from friends, family, and employers who are unable to grasp that this is now a typical headache. When I found this site, I was moved to tears. Thank You!
Andrew Little <doro-19@msn.com>
Philadelphia, PA USA
Monday, May 02, 2005 at 17:35:36 (EDT)

Thank you for letting me know I am not alone. The Devil Symphony was absolutely 100% accurate and I use it to try and show my loved mones a little tiny bit of how I have been feeling for the past 20 years!!!!!
Brenda Goodson <bgood182@hotmail.com>
Brockton, MA USA
Monday, May 02, 2005 at 12:19:35 (EDT)

This site is great
Emma Jenny Taylor <emmainfenny@yahoo.com>
Milton Keynes, Bucks U.K
Monday, May 02, 2005 at 08:28:08 (EDT)

My husband of 18 years was recently diagnosed. I thought I was going nuts, watching him go nuts. I seriously thought he was losing his mind. He's a maniac, he's mean, and stressed so bad I can't stand to be around him. I've tried everything. He started verapamil which seems to be helping. He's done steroids, and has had lidocaine injections into the facial nerves and neck area. We're just starting out on this road. Looks like, from reading these posts, it's gonna be a long long long trip. Any suggestions?
Bev <beverlyreid@sbcglobal.net>
redford, mo USA
Saturday, April 30, 2005 at 00:13:54 (EDT)

I am big time suffering this week! Having to refill my O2 tank every few days! I am on Verapamil presently. Off Prednisone and Lithium. Has any one heard of chiropractic treatments working for them? Thanks, Harold
Harold Pike <KPike40327@aol.com>
Fayetteville, AR USA
Friday, April 29, 2005 at 21:12:35 (EDT)

I'm on my sixth week of this miserable cyle and have been taking Topomax for a week. It's not working yet. They're also weening me off Prednisone. Thank God. What a wicked drug!! I'm using Imitrex, oxygen. Does anything really work? I'm also wondering if everybody else has what I call aftershocks all day?
Tina Heideman <rtheideman@aol.com>
Chesterton, IN USA
Friday, April 29, 2005 at 14:33:41 (EDT)

Hi once again. I was sitting at work when I felt the CH was starting up. So I went to a dark room to sit for an hour or so like i always have to. But you know I tell u, I had those headaches for 3 years now and I have heard some people have them for 35-40 years stuff like that. I DONT KNOW ABOUT U BUT IT NOT FOR ME. I change everything in my life to make it desapear. CH is not a desease that you can cure with pils or shots. Its a mix of everything from your diet to your lifestily. Try changing it. Instead of sitting and waiting for CH to go away "RUN". Just start running until you will exhaust yourself completely (which would not take long but try not to pity yourself in any way. 110% run out for 1-1.5 km non stop as fast as you can). If you smoke quit it and stop eating sugar in any form. Don't give up no metter what.
Erik <hasanovam@bk.ru>
Ottawa, ON CANADA
Thursday, April 28, 2005 at 13:18:33 (EDT)

Hi, I have suffered from CH for 24 years. Although it was diagnosed early, I have only just received the correct medications, thanks to the help and advice given by OUCH(UK). I have just gone into remission but, no longer live in fear of the next cycle, knowing that I can now control the beast. Wishing everyone success in finding the support and treatment they need. David.
David <halstead@f2s.com>
UK
Thursday, April 28, 2005 at 05:19:52 (EDT)

I've had CH since early 1987. I went to every Dr & Headache Clinic I could. No one could help me with the many different meds they tried. One day in an elevator leaving my Neuro's office I ran into a drug rep & we got to talking. He's the one I credit with saving my life. He told me about Imitrex & I called my Dr as soon as I got home. He gave me a Rx for Imitrex injections & I've had to use as many as 3 & 4 a day sometimes just to exist. Thank God for those shots or I don't know what I would have done. I have been seeing Drs at the Mayo Clinic in Rochester MN & none of them know what to do either. Suggest surgery & they about blow a gasket. Have you had any relief other then the shots? Glad I found you. Don't know if I'll try doing what you did but it's an option to make them last longer. My Neuro is pretty good about giving me what I need & my insurance company has no choice but to pay for it. Don't know what I'll do when I retire in 10 years & no longer have insurance. Scarry to think about.
Larry Shore <dianeshore2000@juno.com>
Big Lake, MN USA
Wednesday, April 27, 2005 at 17:05:54 (EDT)

I have experience ch since I moved to the desert of CA. I am currently seeing a Neourologist at Balboa Naval Hospital He has me taking 900mg of neurotin 3X/day. If I sense the onset of a ch I take 2 Midrin. If no relief within one hour 1 Midrin not to exceed 5 Midrin in a 12 hr period not to exceed 12 in 7 days. I have tried Imitrex pills and nasal spray, doesn't work. If I get real bad a shot of Toradol works, due to it knocking me unconcious. A friend found the link and sent it to me. Awesome site.
Jeff Elliott <elliottj_60@adelphia.net>
El Centro, CA USA
Wednesday, April 27, 2005 at 11:39:31 (EDT)

Don't know WHY this works, but it does. After suffering from cluster headaches for over five years, sometime getting 3-4 within a twenty-four hour period, I have literally stumbled upon something that stops them every time. The doctors are stumped and I am stumped as to why it works, BUT IT DOES. I should say at the start that nothing has ever worked to either prevent or stop the headaches before. And, indeed, i still can't prevent them. But I have learned how to stop them. On March 9th, I was at the cardiologist for a stress test. Naturally, I had to wait over a half hour before being called. By the time the nurse came to get me, I was feeling a headache coming on. By the time I got my shirt off and the electrodes were attached to my chest, the headache was in full bloom. By the time the doctor came in seven minutes later, I was in agony and, as usual, curled up in a ball. He thought I was having a heart attack. I explained (as best I could) that I was having a cluster attack. He asked if I wanted to cancel the stress test. I replied that: A) I could not go anywhere in that condition, B) That I was already there and all wired up, and C) That I could not imagine ANYTHING hurting worse than the headache already hurt. So I said, "Let's do the test." Two people guided me onto the treadmill and we began. Then something AMAZING happened...the pain started to go away. By the time I'd been on the treadmill 6 minutes, the headache was gone. I have repeated this procedure either on my home treadmill or outside every day since then...sometimes two or three times a day. It has never failed. The key appears to be getting my respiration and heart beat up to a certain level. I need to break into at least a mild sweat before relief begins. The average for me (on the treadmill) seems to be ½ mile at 3.9 mph about 8 minutes. On rare occasions, it has taken 12 minutes (3/4 of a mile). Also, if the headache is alcohol induced it takes a full mile...or 16 minutes. Variation on this pattern have been running flat out for about a quarter of a mile outside, or running, fast as I can, up four to six flights of stairs. Again, the key seems to be achieving a certain burn rate. My doctor has no idea why this works, and neither do I. All I can say is that since March 9th, I have not had to endure a single full-blown cluster headache for the usual 45 minutes of Hell. Anyone who wants to discuss this more can reach me at rmpc52@aol.com. Bob in Albany
Bob <rmpc52@aol.com>
Albany, NY USA
Wednesday, April 27, 2005 at 10:39:45 (EDT)

I have been getting ch for about 8 yrs I will be going under the knife 04 26 05 and they are going to do the decompression of the nervious intermedious. I will tell u guys how it went when I come out.
Anthoney Gonsalves <myk_gon@hotmail.com>
toronto, ont canada
Tuesday, April 26, 2005 at 22:28:22 (EDT)

58 years old; ch started at age 11; treated as migraine from age 11-20. Diagnosed CH at 20. Headaches every day @ 6-8 per day for 3-4 months. Hospitalized at least 2-3 times per year. Pregnant at 23 and 37. During this period....no ch. (What was taking place in my body to give me relief?? Couldn't stay pregnant all my life! lol told CH may go away at menopause. Never heard of a woman waiting for Menopause?? Menopause comes and goes....no end! Any drug you can think of....I've had. Pain so excruciating....roll on the floor; placae my head between the wall and the mattress; tie up head tightly with scarf; I always get sick of the stomach with every episode. Asked husband to squeeze my head as hard as he could. Sit in bathroom with feet in hot water, while ice on head and neck. To emergency to get demerol and oxygen; As of today....been in remission for 2 years. Hopefully...none of you will have to go this route to stamp out CH. Diagnosed with breast cancer, July 2003; chemotherapy for 6 months (Poisons); lumpectomy Dec. 3004, radiation 5 days a week/ for 6 weeks. Did the poisons of chemo and radiation keep me in remission these last 2 years? That's what I would like the medical profession to tell us. Glad to happen upon this site. You are my sisters and brothers in the CH Nightmare! Thanks for letting me share! Will be back. Impossible to put 45+ years in a day. Thought: Mankind's cancer is "death". All suffering is horrible. I'm a believer in the Creator and there's perfection down the line for mankind. Love your God with all your might...and treat your neighbor as you want to be treated. Such a simple commandment....we make it too complicated. There is hope!!!
J. Cochran <lumumba_akabule@hotmail.com>
Cleveland Heights, OH USA
Tuesday, April 26, 2005 at 17:47:41 (EDT)

I've just been diagnosed with cluster headaches. I've been having them for the last 3 to 4 months.
Mike Malone <mmalone@oltongrain.coop>
Olton, TX USA
Monday, April 25, 2005 at 22:53:59 (EDT)

hi!..i'm new to the computer but not to clusters.started around age 28 & lasted for around 25yrs..no episodes for almost 14 yrs & now are starting all over again..new episode began on 4/10/05..began w/the aura on 4/9/05....i really thought the nightmare was over.
ralph <thebluealbum777@optonline.net>
yardville, nj USA
Monday, April 25, 2005 at 20:07:34 (EDT)

hello, second post to this site, its been, 2 years, but im just beginning to feel the slight pains in the head on the right side this time, took celebrex as i have for reg headaches, past couple of months since they took my vioxx off market, but im starting to feel the same feelings last 25-30 years, stopped drinking(couple beers, or wine a day) om monday, put call into my headache dr. he should call me today, or ill call him today, i have my imitrex, shots, from two years ago, (insurance only two shots every 7 days,) i changed insurance god only knows what it will be this time, will keep posting, thanks for this site, it helps to talk(type) about it, god bless us all, frank d.
FRANK DALONGES
BRICK, NJ USA
Monday, April 25, 2005 at 08:33:08 (EDT)

I'm now 48 and have been pain free for 12 years --- that is until about 3 weeks ago(4-1-05) asleep one night I felt a presure behind my eyeball I havent felt in a long time but I knew what it was without question right away!!! I dont have any insurance and Im unemployed. THANK GOD Im a disabled vet (20%). It aint much & it aint very good but at least I got it. Ive been able to get an o2 system in my home & I'm waiting on my first prescrib. of imitrex I pray HARD it helps because I'm going crazy with pain and the CHs are more severe and more of them per day than they were years ago. Thank GOD I dont own a pistol any more because like I said Im going crazy with pain! CAN ANYBODY SUGUST ANYTHING??????????????????????????????????????????????????
Wayne Wilkerson <alkitinc@yahoo.com>
Ft. Worth, Tx USA
Friday, April 22, 2005 at 19:35:12 (EDT)

cluster headaches 10 years getting worse just need some one to talk to not in a very good mood anymore
larry bowman <redryder00@hotmail.com>
rensselaer, ind USA
Thursday, April 21, 2005 at 10:35:14 (EDT)

I have never posted here before. I have been headache free for 4 months after a year of chronic cluster. Typically 3 headaches a day. If you haven't tried BOTOX I suggest you look into it. Not only did it stop my headaches it seems to keep me from starting up again. Each series of injections lasts for 2-4 months. According to my neurologist your brain, which can not actually feel pain, still has the headaches for a while but your nerves and muscles can't "participate". I lived in the shadow of the torturer for over 16 years. At times they have been chronic. The longest period was 2 years with several headaches every day. The average was 3 clusters of 6 weeks yearly. You all know what this is like. I felt as if I were a prisoner in some horrible prison waiting in fear for the next interrogation. I was lucky enough to have very good insuarance and health care. The physiciians who treated me were concerned and well educated and gave me access to every new therapy, but...the headaches have always come back. It was as if the headaches had some power to outwit each new treatment. I've had co-pharmacy, oxygen, triptans, bio feedback acupuncture, yoga---and so on. Nothing worked for long. I found some references to the use of Botox in a couple of Neurological journals and asked my neurologist about it. He said it was being studied but he didn't do it. I called around and found 2 medical centers in my area that are using it. I asked my primary provider if she knew any of the docs. she said she had heard they were all pretty good. I chose one of the younger ones. I work in health care myself and I have always observed that younger physicians are more up to date on the latest treatment modalities. Older physicians have trouble running a practice, reading journals and getting continuing education. Not all insurances will cover Botox because it is still considered investigational. Mine wouldn't but they sent in my records showing that I had alread undergone all the conventional treatments and got an over ride for coverage. I guess when they totaled the amount spent on triptans in the last year alone they decided the Botox wasn't so pricey after all. One vial can treat 2 people so you might be able to buddy up with someone in your area to save money if you have to pay out of pocket. The treatment involves several tiny injections in the forehead, temples, and nape of neck. These are the "injector sites" of the muscle groups that contract during your headache. If they can't spasm they don't convey pain signals. If they don't feel pain they don't send signals back to the brain so the cycle is interupted. After the first set of injections I had one day of actual headaches and then they began to reduce in both intensity and frequency for a week when I stopped noticing them. About 2 months later I felt an ominous "click" and steeled myself for the rapid onset of a headache but nothing happened beyond a very mild warming of the area that is usually involved in my headaches. I had the 2nd treatment about 3 months after the first. Still no headaches. If there are no headaches at 6 months we wait until they start up again. I cannot convey to ou how wonderful it is not to wach the clock for the time of dread. Now I do not have to worry if I have enough drugs to se me through the day. And let me tell you there were times I had to decide which day was going to be the one I "rode out" with out treatment because I just didn't have enough meds. I hope some of you find this helpful. Make sure you see a neurologist who specializes in headaches, not everyone has the training to know just where to inject. Keep going and be well.
Derek Pappas <mrpappas@hotmail.com>
Seattle, WA USA
Tuesday, April 19, 2005 at 18:44:05 (EDT)

Unreal thats all I can say... I have been so alone for so long with these. I used to search for stuff years ago, then gave up. Now I just decided to look again and I found this site... I have not had one for 2.5 years and know there BACK!!! I just cant feel anymore taken back reading everyone's input about the Demon or the Beast. It just blows my mind- I have said all those things and also called them the Freddy Kruger. I Cant wait to go and read some more stuff. I use oxygen which has been the only relief for me, tho sometimes it wont work very well. back in the day when they started I used to say they are a "learning Demon" cuz when you find something that works it learns from that- and then finds a way into your head regardless of the medication or process you once used!!! Steroid burst, was the worst it worked twice then the third time I had a major reaction and started flopping around in a convulsion from them. Needless to say that was that with them. I have been there done that and still oxygen is my savior 95% of the time. Thank you god for Oxygen!!!
Denis <dencoeng@yahoo.com>
citrus heights, ca USA
Tuesday, April 19, 2005 at 13:55:27 (EDT)

haven,t been at this site for a long time I have suffered from clusters for 28yrs. chronic for last 5yrs.20+yrs on rite side now it just alternates. I did get to know a really decent person on this site nancy c talking to here gave me strenght. but the pain did get the best of me and severe depression set in. the beast got the best of me, and I gave up the fight.this affliction has taken so many things from my life that some times you have to wonder why you keep on going. this site can be helpfull but it can do the opposite to. some treatments might not be accepted by people on this site but please remember do what you need to do for you! and forget about what other people say or think. this pain is the worst pain there is, and we all deal with it in a different way. I still feel today that our pain is not being taken seriously most doctors still don,t care. research is at a minimum and it does not seem to be getting any better. I guess we all just will have to keep on fighting and suffering.
erik <onestopmech@msn.com>
Bloomingdale, ON Canada
Monday, April 18, 2005 at 22:16:16 (EDT)

Just wanted to thank you for having this site. After 27 years of suffering with CH, it helps to not feel alone. As I sit through the close of another episode it makes me sad to read (through a CH-filled, teared-up eye) the many stories. As so many put it, "I wouldn't wish this on my worst enemy", and yet there are so many wonderful people doing there best just to get through the "next dance." My heart is with all, and hope for a day when this site is for "past" suferrers to compare notes. Thanks again to everyone who shared. It has meant a great deal to me. BK
Bill Kendall <bkdesigner@excite.com>
Flower Mound, TX USA
Monday, April 18, 2005 at 00:20:43 (EDT)

I have been cluster head since 1987
Leon Agnew <a1240noel@aol.com>
Lawrenceville, ga USA
Sunday, April 17, 2005 at 22:39:04 (EDT)

I'm a sufferer since jan. 1996 - having my worst attacks ever - convinced I have a tumor!! I'm at my wits end. I'm so tired - I can't even lay down and close my eyes - 30 minutes in---and boom, the beast is back. injections work - I'm tired - I'm not sure I can keep going forward. here comes an other night of rocking back and forth, as fast as I can go - So many people do not understand - I gety tired of hearing about how the jog,swim,meditate,etc...while having their "severe" headache. I can't do anything but hang on and cry. I need help.....................Mike
Mike <Im4GodH@aol.com>
va. beach, va USA
Sunday, April 17, 2005 at 22:34:38 (EDT)

wow thank you for being there. i recieve my clusters every couple of years. i am 46 and this is my 28th day in hell.spent a couple of days in the hospital i think i should of stayed. my doctor is trying new things but it isnt working. this site gives me hope though, and i will have the doc check it out. for all of you who suffer and suffer with you my heart is with you, and i thank god that the word is spreading about what we go through. keep the faith that part isnt painful
mike <walkindude7@yahoo.com>
sioux falls, sd USA
Sunday, April 17, 2005 at 19:50:40 (EDT)

Hi, my nama is Andre and i suffer from cluster headache since the past 12 years. it starts around december to april every year.it always starts at night and i have to leave everything,go to bed and scream like a child for a couple of hours. it is really painful and attacks me without warning.
Andre <lepopulaire@iprimus.com.au>
Brisbane, Qld Australia
Friday, April 15, 2005 at 04:31:32 (EDT)

Hi all could any one tell me if they suffer any other blood related symptoms, as I have heard that there maybe some relation with allergies. I myself suffer from great eurtakeia which is basically the mask sells breaking down releasing histamine into the blood and exploding into large swellings that iche like mad very similar to hives. It seems to me that I go through stages first the inching then the CH spells I have suffered for many years now and the demon is back Imagram seems the only thing that stops it. Its quite scary when after you inject yourself half a sleep in fear of what s to come if you don t do it quick enough you lay there feeling your heart pumping and your chest and shoulders tightening will this be the last one. Can any one tell me honestly what the long term damage is to the heart as although it kills the pain I would like to get a straight answer from some one other then my GP so if anyone has any proper medical advice please let me know if I am worrying unduly On a lighter note one thing that does work momentarily is to get ice cube and chase the pain around side that hurts it only gives mille seconds of relief but when its bad any relief is more then welcome and a hole lot better then none plus the fact it breaks up the boredom and the sense of helplessness.
Steve <eveready@btinternet.com>
weybridge, surrey uk
Thursday, April 14, 2005 at 18:38:36 (EDT)

Hi my name is Sandra and iam a fellow cluster head.Iam very happy to find you.I have suffered with cluster headaches since i was 12yrs old. It is so great to finally have people to talk to who understand the hell we go through.I have attacks every 2yrs they last for 3weeks iam due for another one in a couple of weeks and am terrified.I have tried just about everthing and nothing seems to help .Sandra
sandra <Sandra.Cowie@bigpond.com>
sdyney, nsw australia
Wednesday, April 13, 2005 at 19:12:14 (EDT)

One day I woke up from my bed with a headache, so I did not think anything of it. So I went to school, and as it pergrested, I got worse. So by lunch hour I had to call my mother, to come and pick me up. But when I called her,she said no to stick it out. So by the end of the day I got suspended from school, because it felt like my "head" was going to explode. I just wanted to rip someones head off, then my own. My "back" was soar,to were I could not, but I had to walk. My "eyes" were so sensetive to the light, that I had to wear both sun glasses and a hat. But by the time that I called the Doctors, they said to come in tomorrow. So I stayed up crying all night long, because of my head..... well my hole body. So when my mom drove me to the doctors office, they took me to one of there rooms and turned out the light. Well he gave me viciden 500 mg, and two shots, so I would get some sleep. But when I woke up it came back, and nothing he gave me helped. So when I called him back, he told me to just go to the ER. So I did and that is when I found out that I get cluster headaches.
James
N/A, N/A USA
Monday, April 11, 2005 at 17:32:07 (EDT)

back again. after visiting your site i went to my Dr. and demanded as many samples as he could muster up. i raced home from his office like a kid fresh from trick or treating. i wolfed down a 100mg imitrex pill. oooh, that felt kinda cool. nice little tingly deal goin on. 4 hours later. the tingle was gone but the beast was back. WHAT?! no more than 200mg in a 24 hour period? i'm dead meat! BC powder to the rescue. lots of O2... much more O2. turn that dial up to 8 and suck it straight outta the tube. Yumm. as i inflated my lungs like a rubber raft for 20 min. the pain left. CRAP! only 4 packs of BC per day? these guys are toyin with me hard core. however, i actually made it through the entire day on nothing but BC and 02 i think i have a little routine here. imitrex on the vomit inducing-please shoot me- CH (usually around 2am)a little 02. BC powder around 6-7 am and inflate myself with lots of 02. now on to a seperate room to avoid burning down the house. my wife is in here with me. that would wake her up. sleep on the floor with a heating pad and keep an imitrex close as my trump card. hope this might be helpful to someone. i don't mind pain, as long as it doesn't hurt. God bless Chris
chris <showdaplan@yahoo.com>
virginia beach, va USA
Saturday, April 09, 2005 at 22:10:56 (EDT)

I'm 51 and I thought that I had finally out grown this nightmare. I was wrong!! The demon returned the other night and brought with it the terrifying memories of what was to come. When I was younger it was easier to mussel through the suffering using whatever method seemed to give even a small respite of relief. My old standby was the HOT shower. The last bout with the monster was so sever that even my old friend the shower exacerbated the torture. As the hot water beat upon my head the steam consumed bathroom the pain amplified in my head. It wasn t working. I began to feel terrified. This terror gave rise to a feeling that I can only describe as claustrophobic anxiety . I was scared, I mean really scared! I nervously and feebly got out of the shower and searched for some way out . The old hold the head, rub the head, hit the head, pace, cry, cold wash cloth, hot wash cloth, temple pressure routine just was not having the remembered results. I could only touch my eye with the corner of a tissue to dab the tears. Any pressure with a finger was intolerable Is this going to be one of those that give rise to suicidal thoughts? Damn I m scared. Oh God, what was I going to do now? You know the drill, find something, anything that helps. It has been two weeks now and I m doing the MED thing. Lidocaine, Prednisone and Imitrex (those butt heads $). Maybe it has been the time since the last cycle (or more probably my age ) but I do not remember the pain being this intense. I know you all have heard this before but it was good to share.
Mark Keyser <mnkeyser@comcast.net>
Lawrence, MI USA
Saturday, April 09, 2005 at 09:56:28 (EDT)

Hi my name is patrick,tucson az. Ive been a cluser suferer for 18 years. Its been a very misserable jurney as most of you know. Its great to find a place where others understand what its all about. Thanks for the help and suport, pk
patrick kealy
tucson, az USA
Saturday, April 09, 2005 at 09:27:15 (EDT)

Hi thanks for a great site where I can get some info about these headaches I've been getting all my adult life. I'm 47 yrs old and it's good to know that there are others who get "them" too! Keep up the good work
Carla <oranjeknop@myfamily.com>
Thursday, April 07, 2005 at 04:13:46 (EDT)

My husband, Jim, has suffered from cluster headaches for many years now. Oxygen and Prednisone have never worked. Nerve blocks only work temporarily. The only thing that works for him are the imitrex injections. But I am worried about what they are doing to his heart and if his body can take so much of this medication. Jim has taken 7 imitrex shots today alone! His first at 1pm this afternoon while at work and just now, hopefully his last shot of the night, it's 10:30pm and he had been sleeping for an hour when it came. He is a wreak. When the pain is so bad he talks about suicide. I fear that so many injections are going to kill him. Jim's neurologist sent him to a cardiologist about 3 years ago to test his heart and thank God all the tests taken came out fine. But now Jim is in a vicious cycle again and taking way too many shots. It's ridiculous. I am glad I found this website. I was looking for alternate treatments besides the shots and I found them here. I'm just hoping one of these other methods will work for him. Or that at least trying to Extend the Imitrex will help. We will see. I will keep you posted.
Stacy <heygirlsup@comcast.net>
Chicago, IL USA
Thursday, April 07, 2005 at 00:45:48 (EDT)

8 years ago my doc. said i had allergy related sinus headaches, so i began consuming sinus meds like tic tacs on my first date. God only knows how many freakin pills i've washed down my throat! never able to shake this surprise pain attack in my left eye; never quite knowing when the alien verses predator battle would break out inside my head. the other night i found your page on yahoo; followed a lead on 02 for relief by stealing my mother in laws bottle. It worked! what's that? those are not allergies? oh, there are Drugs!?! Relpax? Imitrex? i love you guys. now that the left side of my skull looks kinda like a dropped apple? what do i do about this soft spot i created by banging my head on the floor?
chris <seemeshopping@hotmail.com>
virginia beach, va USA
Wednesday, April 06, 2005 at 23:51:59 (EDT)

Hello everyone, I am 20 years old and my headaches are 3 years old. I tried a lot of things, the only one that works for me is a hot shower. I went to see chiropractic and from x-rays it looks like spinal cords in my neck jam up nerves that surraund my eye. I've been going to see him for two months now, and believe me I see small but improvements. I just would like to ask you if anybody suffered from neck or spine injury. Thanks a lot for the website, and good luck you all!!!
Erik <hasanovam@bk.ru>
Ottawa, ON Canada
Wednesday, April 06, 2005 at 14:24:22 (EDT)

Thank you. Have had these more than 20 years and just found your site this time after they started again. Have spent many nights the past few weeks browsing through all the great info.
Renay White <white412@comcast.net>
Independence, MO USA
Wednesday, April 06, 2005 at 06:02:19 (EDT)

Hi Y'all,Diesel Denny here again to update you on my docs visit,i have to say that my GP is a pratt,in the nicest possible way,after i found out about OUCH UK i have been advised by a lovely lady called Val about the proper medication for these horrible heads we all get,firstly i was on tour with my band Diesel Cowboys up in bonnie SCOTLAND and suffered a humdinger of a CH,started at 1.30am and was still pounding away at 6.30am so forget the DISPERSABLE ASPRIN i told you about as they didnt work this time,so i took a taxi to the CROSSHOUSES HOSPITAL in IRVINE and after four and a half hours they eventually gave me 8 IMIGRAN 50gm tabs along with 8 tylox co-codimal to take away with me,,came home early from tour and had three days off,went to docs and lucky for me they had a locum dr who seem to know a wee bit about CH,he gave me 24 Imigran tabs along with 100 co-codimal,flew down to Stanstead to catch up with band and was fine for three days,on the Sat night had a corker of a ch and took one Imigran and two co-codimal,never worked so two hors later took another two co-codimal still no relief,after another three hours took another two co-codimal in desperation but to no avail,i should have known better but took a real bad turn and was violently sick,went a pasty colour and felt very bad,off to hospital in Woking,was given blood preasure test and was asked if it was always this low,i said no and asked for oxygen,after 20mins got colour in my cheeks and felt a wee bit better,a slight accidental overdose of co-codimal i think,so don't be like me and be stupid,anyway the doc gave me a prescription for Imgran Injections,i have been fine for the last two days and went to see my own GP and told him what had went on,i asked him for more Imigran Injections but he said i would be better off with the Imigran Nasal Spray so i agreed with him,but when i mentioned CD O2 he had never heard of it.so i looked into where i could aquire some and went back to him for a prescription,after asking him if he was refusing to give me this oxygen and threatening to report him he eventually gave me the presription,so if anybody else out there has the same problem,then stand up for yourself and demend the right treatment for your CH'S,the real problem is that they dont know enough about CH'S,so it's up to us sufferers to educate them.I am now on Verapamil,Imigran and Oxygen,i feel i can at last cope with them untill they go away and when they do come back i wont have to go through all of that again,i hope this will help someone out there,lets all live in hope that one day they will find a cure to take them away completely,to painless days and nights,yours DieselDenny
Denny Mochan <dieseldenny5@btopenworld.com>
ENGLAND
Tuesday, April 05, 2005 at 19:14:26 (EDT)

I am 21 years old. I've had an ongoing attack for a year and a half now. I am currently in the Marine Corps. I am getting seperated from the military for this headache. I have my up and downs but it never completely leaves me. There is never a seconds peace for me. My only escape is to take enough tylenol PM to pass out for a few hours. And I did read the part of your about no drugs, I hope that does not stop any of you from talking with me. I have a feeling that someone might finally understand my pain. I often feel that I will never escape it. Costantly cowering in the darkest corner of my room, because the light will surely be the end of me. I have tried every medicine the US military has to offer for migraines. No change in anything. Several test, Cat scans, spinal taps, EKGs, blood test. Everything comes back normal. I don't feel normal. How can a man be proud when he can do nothing. It takes everything I got just to roll out of bed in the morning. (and it is rolling there is no sitting up) I'm not sure if there is limit to what I can write so I will stop for now. Thank you.
Jeffrey <BigSexy33084@yahoo.com>
Jacksonville, NC USA
Tuesday, April 05, 2005 at 16:32:07 (EDT)

I'm 50 years old and had my first CH attack last week. Doctor prescribed Prednizone. So far pain has been bearable, but loss of sleep is tough! Does anybody out there know a good CH doctor in Northern Utah?
Andy Allen <andyrenae@mstar.net>
Brigham City, Utah USA
Tuesday, April 05, 2005 at 14:14:58 (EDT)

I was finally and gratefully diagnosed with CH two years ago, after 10 years of being told I had "sinus headaches". Fortunately, I only have them once a year for 1-2 months (1-4 times a day). The latest episode started a little over a week ago. When they hit, I knew immediately what was going on, but was out of Imitrex. All I could find was a box of BC powders (the "original formula"). I took one, and the pain stopped within 5 minutes. I immediately got to the pharmacy and filled my perscription for Imitrex spray. When the next CH hit, I took the Imitrex and the pain was gone in 20 minutes. OK, so now I'm wondering...Why did the BC powder work more quickly than the Imitrex? When the next CH hit, I took another BC powder and the pain was gone again within 5 minutes. I've been on nothing but BC's for the last few days and it's working extremely well. I don't know why and I don't know if it will work for anyone else, but I thought I'd mention it. Hope this helps someone else and I'll continue to pray for all of us.
Kevin <jkmanley@bellsouth.net>
Columbia, SC USA
Monday, April 04, 2005 at 16:49:51 (EDT)

I am luckier than some because mine are seasonal. I do not know why the come but I have been dealing with them for the last ten years. I am sorry for anybody who goes through these. It is hard to explain to people how painful and stressing these attacks can be. I had one that lasted two hours. I usually black out. I guess i want to just say what helps me is to heat up a scolding hot cloth and burn my face until I can get that sinus passage open and i sit up(never lay down) in the dark and don't close my eyes but let them just hang. My eye waters like crazy and I just try to lose myself and go into another place because of the constant pressure in my eye is so intense I am glad I don't keep guns in the house.I hope the best for all of you who suffer with these demons. As they normaly hit me in sleep , recently they have come on at work and band rehearsal. It sucks to have people see you with one side of your face swollen and you look like your head is going to explode. I recently tried acupuncture but not sure if it worked. I was just begging her to jam a needle in my head.. I just wanted write because I have never spoken or listened to anybody who shares this. Thanks for reading. S.Dodds
steven <doddstinkerton@yahoo.com>
san francisco, ca USA
Thursday, March 31, 2005 at 04:09:54 (EST)

I am amazed that there is a site like this. I am experiencing my third CH episode in 7 years. Each episode has lasted from 7 to 21 days. What works for me is Imitrex and Vicotin. I find that watching TV in a room with very little light kicks my CH off. Watch out for this senario!!!! Is there anyone that has experienced this? Good luck to you all!!!!!!!!!!!!!!!!!!!!!!!!!!!
Brian Walker <bwalker@mckennacars.com>
orange, ca USA
Tuesday, March 29, 2005 at 22:53:30 (EST)

Well it's been a good run. Year and a half cluster free untill now. Luck with Prednisone for the first time. Hate the stuff and never took it correctly before moving on to Verapimil, Inderal etc. 60 mg per day for 2 weeks has at least slowed down the Devil. (41 year old male 4am and 8am attacks with somewhat milder 1pm and 5pm episodes. Last cycle lasted 7 months. Danced with the devil since my early 30s) Will begin tapering Prednisone today. The scary part is that my insurance has cut me off from the Imitrex injectables. And anyone on this sight knows how scary that will be. Has anyone had success getting the vials of Imitrex? It makes so much sense. Use less medication, spend less money. Please respond if you can help. (Already went through Glaxo and wrote numerous letters to insurance company so that avanue has been explored) Thanks to everyone that has anything to do with this website. You are all big help to us. Glenn
glenn huston <glennhuston@yahoo.com>
san diego, ca USA
Tuesday, March 29, 2005 at 22:46:51 (EST)

I am so glad that I stumbled upon this site. My husband ans I are living in HELL at this moment. His headaches have been going on now for a month now, some days are worse than others. It scares me to see him in so much pain day after day. I am at my wits end, as I know he is too. I dont know how to help him. It scares me to the extint of his pain, the tears, the pacing. If any on has any helpful hints for he or I please fill us in. He has been given oxygen but we are still waiting for the tank to be ordered. And the dr has also given him lidocaine. He says he doesnt want to put the drops in his nose. (does it really work?) Thank You for anyone that is listening.
stacy <rdrder@sbcglobal.net>
lawton, ok USA
Tuesday, March 29, 2005 at 21:05:04 (EST)

Hi all of you....I'm new at this place..I'm a woman from Norway..and I don't know anybody who have this beast in their head... Hope to get to know someone from this site... All my love to all of you who suffers from this horrible headache...
AnnsReisunn <agengan@online.no>
Trondheim, Norway
Tuesday, March 29, 2005 at 14:18:34 (EST)

Hi everyone, Saturday the 25 of March is the first day I have been diagnosis with Cluster H.A. The emergency room doctor at the hospital explained that the symptom that I was experiencing is a Cluster Headaches. A couple days ago the pain on one side of my face was beyond anything I have ever felt before, as I would drag my face on the floor in pain and start crying. The doctor has proscribed (Verapamil ER 240mg) & (Maxalt-MLT 10mg) which haven helped a bit. My wife started to put ice cold wash cloth on the side that hurts and it helped a lot!! I try to keep up with the news, science, and today s medicine and I have never heard about Cluster Headaches until now. God help us and bless this website.
Jamal Nasser <humzasdaddy@yahoo.com>
Palmdale, Ca USA
Monday, March 28, 2005 at 10:37:24 (EST)

Hello all suferers. My first time writng so I will be brief , to the point and open to responses. I am an episodic sufferer and feel lucky. When my demons are out i wonder why me. Then I wonder why not me. All can offer when my demons are out is i burn my face with hot clothes to open my sinus passage and hope for a twenty minute episode and not a two hour one. I have read your commments about this and my heart goes out to you. Best wishes , much strength and the such. I am also writing because I am tired of mis understanding of the regular world and how the severity of this afffliction goes unoticed. My heart goes out o you and know when these fuckers are not around I am happy. Please write back and I agree with that girl when she says" Tell me to take another Tylenol I will stick a pen in your eye. s.dodds
steven <doddstinkerton@yaho.com>
san Francisco, ca USA
Monday, March 28, 2005 at 05:30:25 (EST)

Good day. I am a male aged 53 and suffered from CH for about 3 years now. I had a brain scan 2 years ago , needless to say they found nothing ( thank God). I saw the ear specialist about 6 times and eventually had a suspect tooth removed . It improved and it lasted a few months. I had 4 major attacks in the last 2 weeks and saw the neurologist who gave me medication which did not help.I had 2 good nights now and eliminated spicy foods first but the CH returned. Then I discontinued alcohol ( wine and whiskey ) and I had no attack since then . I drink lots of water. Let us see where this takes me now.My empathy with all the memebers of this terrible "club"
Schalk de Beer <flagship@worldonline.co.za>
Durban, South Africa
Sunday, March 27, 2005 at 22:41:14 (EST)

When my CH began after a 7 years pause, i had to go to a doctor here in Paris. In addition to the pain killer (which is called imigrane here) he gave me a medicine that is actually used for heart disease which is called Isoptine (you have to go through a ECG before you can start with this medicine). He told me they have no explanation why, but using this medicine through the cycle (3 times a day in my case) suppress the headache in most of the patients, once the cycle is over you stop taking it until the next cycle. After I started, first the frequency of my headaches which was 2 - 4 times a day dropped down to 1 every two days and after a week they completely disappeared. I suggest this treatment to all without heart problems.
Asli B. <asli_b@mail.com>
Paris, France
Sunday, March 27, 2005 at 13:46:37 (EST)

I can not believe that others have this HELL. It is assuring to know that others can relate to the agony. Last night was the worst one I have EVER had. I will try the WATERx3 and other tips. Thank you for the nice site!
Greg F <apt1@fidalgo.net>
Bayview, WA USA
Saturday, March 26, 2005 at 16:24:52 (EST)

Thank God there is a support website like this one. I have been a sufferer for 25years, with little support.
John Glendenning <jglen10@bigpond.com>
Sydney, nsw Australia
Friday, March 25, 2005 at 08:32:01 (EST)

Hi ihave been a CH for 18yrs,on 9th May 2000 i had a brain haemmorage,was lucky to come out of that fit and well,i thought that would be the end of CH`s but alas 2yrs later back they came back,steroids got rid of them,but i have them back again for 3weeks now,tried steroids again but no good,was on Verapamil 40gm 3 aday but felt dreadful and stopped them,go to docs 2morrow,will update you,what seems to help me at mo is 3 DISPERSABLE ASPRINS just as CH comes on,takes the sting out a little and they go away a wee bit quicker.It was pot luck that i found this web site as i was looking up CH`s,i think it`s brill,nice to know there are people out there that understand THE PAIN!I have printed off the 17 page medical information sheets to give to my doc 2moz,as i am a full time musician [just what one needs as a CH sufferer,lights and noise,not to bad playing country music]i will be going away on tour on friday25th march for 10 days to play south of England so wont be here to ansa e-mails etc,but i will when i return,thanx for taking time to read my stuff,hope we all have a peaceful nights sleep.Your Newest CH. DieselDenny
DieselDenny <dieseldenny5@btopenworld.com>
Alnwick, England
Wednesday, March 23, 2005 at 16:28:07 (EST)

I have been suffering from cluster headaches for about 10 years. I am currently starting a bout of headaches but it is just the beginning. I have had about 3 headaches in the last week but I know they're going to get more frequent and more intense. I have seen my neurologist and we're going through the same treatment we've gone through in the past. First, it's the prednisone along with the Imitrex injections and also the Lithium. Let's see if it works.
Ruben Echeverry <rubenecheverry1@optonline.net>
whippany, nj USA
Wednesday, March 23, 2005 at 15:30:07 (EST)

I just wanted to say 'Thank You' to the person or persons responsible for making this web page and information available. I have been suffering from clusters for about 16 years now and it's actually unbelievable how much better it made me feel to realize I'm not alone.
Sean <lgemmill@cogeco.ca>
Dundas, on Canada
Wednesday, March 23, 2005 at 11:47:33 (EST)

I'm visiting Clusterheadaches.com after an absence of a few years. For various reasons I've not spent much time on the net these past few years, but I hope to get back in the groove. I'm happy to say I remain in remission since November 1999, (largely due to my age, in my opinion). In 99 the neuro I was seeing placed me on Nortriptyline, since nothing else had worked for me. He predicted it would break my cycles and he seems to have been correct. Since that time I've joined the Medicare group and think it's generally thought that after a certain age you cease to have cluster headaches. I'm clinging to that theory! I have not taken the Nortriptyline since 2000 or 01 and have not gone into a cycle to date, although I have experienced some mild migraines(if there is such a thing). After 11 years of suffering from clusters, migrains are merely an inconvience. LOL Anyhow, I hope to find some old friends, and make some new friends. It's good to be back. Margaret Godfrey
Margaret Godfrey
Fort Smith, AR USA
Tuesday, March 22, 2005 at 20:03:29 (EST)

Hello, Thank you so much for all the info here. Very helpful. I have suffered from cluster headaches since I was a teenager, and it is just recently that it was figured out what it was. I come from Kenya (East Africa) and doctors here are yet to know about the illness. I was treated for migraine, which ofcourse didnt work and even sent for a CT scan which showed nothing wrong. I then opted to suffer in silence since nobody seemed to know whats wrong with me. I came across a SouthAfrican medical book, and all my symptoms led to Cluster Headaches. I took the info to a doctor who seconded the diagnosis but really is not aware of the treatment available. I've been in remission now for almost 3 years, since I got pregnant (my baby girl is now just over 2 years). Recently I have had 3 aborted bouts. I have to save up some money every week to be able to pay internet charges at my nearest cyber cafe to know more about CH and also reassure myself that Iam not alone, and that someone understands. That someone is you, because even here my own family including my husband dont understand. One minute Im pain free and in the next 5 minutes Im screaming, with tears from one drooping eye flowing, hot lips, blocked nostril and unbearable pain which I cant sit still to pass over. In about 45 minutes Im all fine I've lost jobs this way, my bosses couldn't understand why for about 2 months I kept rushing out of the office to pace in the bathroom while I would be so okay afterwards, like nothing happened. Employers here found this very disruptive and I lost job after job(you cant work for the 45 minuts - 1hr of an attack and as a secretary whose gonna pick the phones?)Im now looking for flexi time work here which is next to impossible. Everyone insists that I look for a permanent job to supplement my hubby's income and improve our lives, but they all don't know the obvious outcome. Im not complainining. We have food on the table and a place to sleep which is uncommon to many families here, so I thank God for that. I would love to attend one of those CH conventions to meet other sufferers, share my side of the story, and just talk to someone who has gone through what I go through. Please email me info on upcoming conventions, how I can get a sponser to just raise the fare and a place to sleep. I can save up on upkeep from my weekly house running allowance. Thank you so much & God Bless you. Susan Gachago
Susan Gachago <wgachago@yahoo.com>
Nairobi, Kenya
Monday, March 21, 2005 at 05:18:37 (EST)

I have suffered for 2 years with clusters. I have been treated by 3 different neurologist, with no relief. I was taken the max dose of imitrex every day.When asked what I was going to do for the day I would reply Wait for my next cluster. I went to a pain management MD and was given ACTIQ (fentanyl sucker). Very apprehensive to use but I tried it. Within 20 min. Cluster was gone. This is a miracle. I can not believe the relief this has given me. I was having 3 to 4 episodes per day now 2.
John <jkbaker1@comcast.net>
USA
Sunday, March 20, 2005 at 23:30:47 (EST)

I found this web site because i thought i might be addicted to painkillers and i was getting headaches so often maybe because my mind was making them up just so i could have medication. But then i got reading and now im not so sure, i have been to the doctor and i am supposed to get a cat scan done, but i havnt as yet. I thought i was the only weird one out there that got headaches all the time, i dont no how to stop it and at least i no there are other people out there that suffer the same as me, and no its hell to go through. I'm also only young so im not really sure whats wrong with me.
Liz Warren <elizabeth.warren@poports.com.au>
Brisbane, QLD Australia
Sunday, March 20, 2005 at 18:55:54 (EST)

Do any of you notice that a lot of us have smoking in common. If I smoke I will go into full blown clusters more often. Now when i feel that they are in my immediate future, I stop smoking and seem to avoid the long term episodes. As you all know well after the cluster goes away you feel almost high due to the lack of pain. I have found in the early stages of the cycle that a little Valium will help if you take it when you first start to feel the heat in the back of your neck. Hope that might help somebody......
lee <lm111153@aol.com>
fresno, ca USA
Friday, March 18, 2005 at 22:21:18 (EST)

I have been suffering from these things for 6 years. I consider myself a pretty strong person, but when I entered this web site and began to read other postings, I actually began to cry. I always felt that I was alone and that no one could understand what I go through. It feels so good to know that others understand. This web site actually gives me hope.
chris <cmccann@cityofnormandy.gov>
, mo USA
Friday, March 18, 2005 at 16:01:16 (EST)

Hi, been there all too often.
matt matlock
Parsons, ks USA
Thursday, March 17, 2005 at 19:18:23 (EST)

Hi, I have been here for first time. I think I suuffer from CH. Can anybody tell me is there connection between CH and spine.... Ma back and neck a killing me too.. Thanks::
vladimir <vladimir.fagarazzi@inet.hr>
zagreb, croatia croatia
Thursday, March 17, 2005 at 09:34:47 (EST)

have been suffering since 1976 as a junior in high school
bill robey <abcdrobey@cox.net>
north las vegas, nv USA
Tuesday, March 15, 2005 at 22:01:51 (EST)

Hi Cluster sufferers, Im currently on my 22nd day of this bout,i hav been a clusterhead for 6years now,getting bouts usually around nov-feb every year and they last anywhere between 4-8weeks,attacks last from mild 45minute ones to 3hrs plus killers generally in the afternoons and waking me up at night,i currently take SANDOMIGRAN as a preventive wich doesnt seem to do much and CAFERGOT to try and stop them,which is alright on mild ones but on bad ones the cluster seems to last as long as it wants to.Ive read Imitrex is good is it worth changing to and Verapamil for a preventive,happy to hear from anyone that can advise. Regards Adam Wright
Adam Wright <arightway@bigpond.com>
Sydney, nsw Australia
Tuesday, March 15, 2005 at 07:04:29 (EST)

Well i am a 25 yr old female and for as long as i can remember i have suffered from migraines. But in the last 12 months i have been getting Cluster Headaches only been diagnosed recently.. Going to trial some medication in hope to minimise them . Cause god i dont know if i can take them much more. The last lot was for about 2 weeks every day, every couple of hours. Boy did i loose some sleep. But i was glad to find a name for them and then to find this website and to know i am not alone. My Mum seems to think they may have been cause by a serious car accident i had on Christmas Eve 2003, i have a very bad neck injury which still causes dramas to this day.. So maybe that is something i will have to find out.. Well if anyone would like to contact me to chat please feel free. Thanks again for this website ..Regards Jody
Jody Barrett <blondon12@hotmail.com>
Newcastle , NSW Australia
Sunday, March 13, 2005 at 22:47:59 (EST)

Diagnosed by Neuro in 2001. Taking Imigran injections to abort. Epilim & Amitriptyline as preventatives, which don't really work. So glad I found your site.
Judith Ann Harrison <judkins@hotmail.co.uk>
Worcestershire, England
Sunday, March 13, 2005 at 04:24:16 (EST)

Hello all CH victoms! I am a CH patient and live with the anxiety of it coming every year at the same time. The Devil has come every year now for the past 4 years, it has been 14 yrs total. Imitrex, verapimil, and percoset have gotten me thought my dances with the devil. FYI, the percoset is used for the trauma after the dance, if you know what I mean. My insurance doesn't cover the oxygen but, it sure takes care of everything else. If your Neuro will do the "Brain" nerve block until your prescription comes in, do it. When I had it done it was experimental and I was charged for it but the cost wasn't the issue at the time. If your insurance company does the mail order thing it is worth it! Good luck to you all! The ones with and those that have to watch others suffer. Praises to my Wife that has been there for me in "The Battle".
Rick <rwhitehornjr@midsouth.rr.com>
Memphis, Tn USA
Sunday, March 13, 2005 at 00:45:06 (EST)

Hi all a 54 year old male been free for the past 6years following a heart attack. used Imetrex injection in the past worked well. Now cannot use any of the current medications to treat the beast 5 to 6 per night. have oxygen. in my 4th week any suggestions?
Steve <Beavis2139@aol.com>
NJ USA
Saturday, March 12, 2005 at 20:50:44 (EST)

Hello! I just found you tonight and I'm so grateful. I've suffered from headaches--forever. My whole family has. I'm 59 and have been resigned to just "living with it". It's great to find support. I need to read your messages and gather info. Thanks for hope! Marion
Marion <MarionSharpe@msn.com>
Rochester, NY USA
Saturday, March 12, 2005 at 01:53:59 (EST)

Hello to everyone. It's been a while since I've been here. I haven't actually posted since my last cycle ended in 2002, which wasn't very cool of me. I found some great information on here when I was struggling with my third bout with clusters back then. I made my way back tonight because I'm afraid I may be gearing up for yet another season in a couple of months (I'm episodic every three years, almost always starts around Memorial Day and ends around the end of July or first week of August), and wanted to revisit some of the stuff on treatment in case I get it again this year. Some things have changed since 02. I'm 35, quit smoking (finally!) back in July, and rarely drink alcohol anymore. I'm hoping that maybe this will have a positive effect on my cycles. Only Time will tell. I have never tried any of the meds listed here. I give my doctor credit for first diagnosing me w/ clusters back in 99, but he had me try indocin for pain and claritin for allergy symptoms. Complete waste of time. By the time indocin would kick in, my headache would usually be over. Never tried oxygen and imitrex scares me a little. During peak of my last cycle I posted something I did and didn't really get much of a response, so I'll say it again and see if anyone else has ever tried it. I get the classic droopy eye and stuffy nostril tell-tales during cycle (mine are on the right), and during peak session of complete hell, used Afrin nasal spray on the stuffed up nostril and laid down for a few minutes. It didn't kill the cluster completely, but it backed the pain down from an all out 10 to a tolerable 4 or 5 w/in minutes. This worked on more than one occasion, and wondered if anyone else ever tried it. Just curious. Thanks for taking the time, and I promise not to neglect the site for this long again! Rick C.
Rick Carlson
IL USA
Thursday, March 10, 2005 at 23:29:26 (EST)

hello my name is jacqui. i have suffered with these horrible heaadaches since i was 26. i am now 33. i have had 4 bouts of these aand they have lassted about 8 weeks at a time. i have been taking verapimal now since the last time which h as over a year now. touch wood! i think about them all the time now like when will they come back. so dreading it as the pain is excuriating. i will keep in touch with this site so take care all you sufferers
jacqui <jacqui.rodgers@homegroup.org.uk>
oxford, england
Thursday, March 10, 2005 at 14:20:38 (EST)

Since I have been on Verapamil the beast has been in hiding. Its been 5 months since my last cycle, which lasted 9 months. It was 9 months of hell. This site has been a big help to me in explaining to others of the pain that the CH sufferers goes through. To my fellow sufferers, keep up the good work. Pass on any info to others on how to manage the pain. Have a pain free day my friends....
Benjamin <bennystpete@yahoo.com>
St. Petersburg, FL USA
Wednesday, March 09, 2005 at 07:37:31 (EST)

Hi all , At least I found people who has the same problem with me . I Suffer CH since age 25 ( 1997 ) , I am considering to go to chiropractic in Jakarta . But is it recommended or not ? Please share . -- There was no time for pain -- ( Dream Theater - Learning to Live ) Yoga Thank You
Yoga <yogaoetarto@yahoo.com>
South Jakarta , DKI Jakarta Indonesia
Tuesday, March 08, 2005 at 22:45:28 (EST)

I had my first ever visit to a local chiropractor today for the purpose of determining whether the CH might have something to do with my neck or back. Has anyone been to a chiropractor for CH and if so, has anyone had any success? Please e-mail me as I would like to hear of others experience with a chiropractor.
Keith Smith <yosmith@nettally.com>
Tallahassee, Fl USA
Tuesday, March 08, 2005 at 21:21:44 (EST)

Hi,I suffer from cluster headaches myself ,have been getting them for about 20 years or so every 1,2,3 years they hit .the right eye shuts and drips and the pain is unexplainable ,I have taken showers,imitrex loritabs prednisone ,topamax,you name I may have tried it ,imitrex will take it away but you can rest assure its only temperary,just enough to get to sleep and an hour later back again,I usually go out on disability at work because you literally can't function after the first few days with no sleep all the meds. it is a saftey issue at that point and you can't call in every other day or you won't have a job so going on disability is #1 option for 4 to 5 weeks I know that its not alot of money and waiting for acheck isn't fun but its your health and life.and you will have your job when you go back.Also taking loritab sometimes may let you relax after taking a shot.All I can say is its hard to expalin to people that you have a headache , so when people ask me about or make fun of it I tell them to go to cluster headaches .com and read alittle ,becuase I am sick and tired of trying to expain which it is really none of there bussiness in the first place . every thing is alright till that person has some kind of problem and then you see them looking the other way when you come around,. weel thats enough for now ,maybe I will write another ,just alittle different another time,I amm sure I did'nt remember it all to write tonight,theres alot more that goes on inbetween some good some bad ,but you can be sure if it's during a cycle it's mostly bad take care all, anyone with any better meds. that can be taken to deal with this pain let me know ASAP thanks john ruge in cassadaga newyork. johnf12@netsync.net
john ruge <johnf12@netsync.net>
cassadaga, ny USA
Tuesday, March 08, 2005 at 01:34:17 (EST)

it s me again. i am trying to put some input every month. I was chronic cluster headaches for ten years. They have been gone for a year. I know they will be back. I am making every day count . I know how hard it is trying to stop the next headache from coming on it s a cluster life every day. So many new people every day getting clusters. Something going on. I know your pain. I wish i could help all of you. All i could do for ten years is take one day at a time. I have made it so far. They will stop some day mine did hang in there . Eggie
john stockwell
greenville, NH USA
Sunday, March 06, 2005 at 21:51:18 (EST)

Hi All it is so good to know that I was not going mad which my doctor was leading me to believe. I am 23 and have just recentley started suffering from this awful pain on the right side of head I just wanted to curl up and die it comes from nowwhere and wham just its you. Anyway thank you for posting your notes they have helped a lot. feel free to email
Sarah <sasm03@aol.com>
WM, England
Saturday, March 05, 2005 at 12:46:52 (EST)

Hi is there anything in medicines to treat the cluster headaches. My husband has been having them for a couple of weeks.please write back
marty <Marty_knop@yahoo.com>
montville, oh USA
Thursday, March 03, 2005 at 18:55:20 (EST)

Hello i've had ch's now for almost 6 years. They usually start in my left eye and progress to my left ear and then to my left jaw, by this time the pain is real intense. On the onsight of an eye ache first I always have a ball of cotton in my left ear(seems to help keep them away sometimes). They usually come on after i've slept more than 8 hours, waking me up with an eye ache at first. At home I jump on the oxygen tank and turn the flow up to (i'm guessing around 30 to 40 liters per minuite). When real bad ones come, I hyperventalate to get as much ox in as fast as I can. Note ( with me if the cotton is in my ear the headache goes away within 10 minuites, but will return sometimes 3 more times without the cotton). Sometimes I take a nap and they come on the average every hour and a half. When i'm out and can feel a burning in my eye thats the first sign. I use the instant ice cold packs ( 3m makes the best), I pop the ice pak and try and freeze the area from my left eye and ear (just hold it on long enough for the area to get numb then try and quick warm it up with your hand. If it doesn't go away repeat the process until it does go away or the ice pack gets warm ( i have found the colder the better). I have also found that sleeping on the side that the headaches come from make them come faster. Its my own belief that my head gets hot, the blood vesels expand and cause the headaches. Anything that keeps the heat in your heat could cause an attack, try not to wear hats, bandannas, anything that will contain the heat in your head (even sleeping on the side that the headaches come from could cause an attack. I think once the blood vessels expand the headaches start, for me the quickest way to get rid if them is to cool them off. A high flow rare of OX gives a cool fresh blast to stop them, along with the ice packs, remember the colder the better (sometimes my head is numb from the cold, once it warms up seems the head ache is gone at least for a while. I take Imatrex also, only when I know i'm not going to be around a tank. They usually last some wheres around 6 hours ( be careful not to take to much imatrex or you'll risk rebounds which are much worse than a normal CH. I know what it feels like to have really bad CH's and hope these simple things will help some of u out there. Good luck controling the BEAST!!!Alan
alan <ascri38223@aol.com>
avon, ct USA
Thursday, March 03, 2005 at 01:27:16 (EST)

Hi, first hit tonight exellent site been a sufferer for 14 years nice to know nothing really works for anyone just grit your teeth and pray!!!
Kevin Harman
Hastings, England
Wednesday, March 02, 2005 at 16:13:39 (EST)

A daughters cry for help....CAN ANYONE HELP MY DAD? My dad is 47 and suffers from cluster headaches very badly. He takes the imitrix shots, and pills, but nothing makes them go away. He told me his friend described how his faced drooped like he was having a stroke during a recent cluster headache. With all the top medicine and research, why hasn't a cure been found? Is this an epidemic like the severity of AIDS? My dad doesn't have interent connection at his house in North Dakota, but any advise anyone can give me I can relay to him. Please help. God Bless all of you.
Aimee Mischke <aimeelydia@hotmail.com>
San Diego, CA USA
Monday, February 28, 2005 at 12:20:16 (EST)

Hello, I suffer from myofacial and trigemanial syndrome. I also suffer from these headaches that come out of nowhere. There are located on the rightside of my head. Sometimes I also get bad mingrines. I am new and would love to have someone to talk to about these cluster headeaches. It seem like no prescrip med help or over the counter. Please help! Smiley101161
Brenda <smiley101161@yahoo.com>
tampa, fl USA
Friday, February 25, 2005 at 17:09:56 (EST)

Greetings fellow cluster heads! It is not a happy thing to see so many suffering from this condition but it is of some comfort knowing one is not alone in this misery. I have been having "these" headaches since 1983. They went dormant for almost 10 years then came back with a vengence. It was officially diagnosed by a neurologist that gave me a lot of information on this condition (he specializes in CH and Miigrianes). With all that and the medications, life has been pretty miserable. I was at the end of my resistance and tried an alternative treatment and achived immediate relief. I was at the peak of my cycle and had to repeat the treatment x 2 but it has broke the cycle and I now remember how it feels to be happy and to laugh and live life apart from the misery of the traditional medications which had side effects that made me tired and generally feel bad. It may not be a permanent cure but I am off all medications, Verapamil, Relpax, Zomig, Imitrex injectable, Depakote, O2, even Toradol Injections are all the meds I have been prescribed and have taken and hated every dose I had to take. For me, it was trading the CH pain for bad side effects of the preventative and abortive meds. I can only say that it has been a journey that I wouldn't want anyone to have to experience. For the moment, I am happy again and living life to the fullest until the "Monster" raises it's ugly head again. Oh, the alternative treatment, if you really have been researching on the web, you will know. Just follow the links from this site. Best to you all and keep on keepin' on!
Darkside <darkside1@fastmail.fm>
Austin, TX USA
Friday, February 25, 2005 at 08:42:42 (EST)

Thank goodness I've found this site. I am a female and I have had an MRI, been to a doctor who said I had rebound migraine headaches and perscribed elvail and thorazine. I have done a lot of research and I know I have ch. My doctor said only men get ch. The elvail and thorazine did nothing to help. I use the imitrex spray when it is really bad, but it is so expensive, I can't take it all the time. I get a ch about every three hours. Now I take about 20-25 aspirin or tylenol every day. My doctor is no help at all. Is there any way to convince him I have ch. He probably does't know what they are. I've been to three different doctors. Can anyone help!
Victoria <freedomcharles@AOL.com>
Cameron, MO USA
Thursday, February 24, 2005 at 18:24:46 (EST)

I have posted to this site once before, approximately this time a year ago when I was in my last cycle of these cursed headaches. Within the past week, the Beast decided that I was enjoying life a little too much and decided to return. Thankfully, so far, this latest cycle hasn't been nearly as bad as a year ago. I have been able to manage this latest cycle. With this latest cycle, I've been getting them within an hour or two after falling asleep. I think I read somewhere on this site that dreamfilled sleep is one of the triggers, if that's the case, that might explain why I've been getting them shortly after I fall asleep because I've been having a lot of dreams. It almost sounds like the freakin' Freddy Krueger movies! I have read several posts where a lot of people have family or supervisors that might have doubts about these headaches and the pain associated with them. Last year, I printed out several pages from this site for my boss. I believe it made him aware that I wasn't making up these headaches and that thousands of people suffer from these headaches. It worked for me to be able to show my boss some of the information shared in this site and so its just a suggestion to others to give it a try. I also recently discovered that someone I know has CH as well. Now, I have someone to talk to in person about CH who understands the pain. Sometimes just talking about it to someone makes it easier to deal with. I read somewhere within this site that a woman said that to her, the pain was worse than child birth! Just trying to desribe the pain to someone that doesn't have these monsters is like to trying to describe to a soon to be dad the joy of watching your child being born, its indescribeable.
Keith Smith <yosmith@nettally.com>
Tallahassee, FL USA
Thursday, February 24, 2005 at 14:32:53 (EST)

Wow I am not alone. Today I carried my head higher just knowing there was others out there like me. Here goes my first attack was at 27 while attending LPN school went to the ER once and suffered the remainder of the time it started April 2004 the most intense part of the semester and continued through August and slowly ended. By Gods good grace I got my LPN and started at a Nursing home and this November toward the end bamb it was back. I cringed at all the warning symptoms I knew it was coming. Small pains to left side of my head, pressure behind my L eye, tearing L sided sinus congestion, and neck pain. When the ice pick came at my head all I could do was reach up and push as hard as I could to make it stop and those weren't the wappers. Man when it grabed and release and few seconds if not minutes it would grab again going on for 2-3 hrs and then after shocks all night and total exhaustion the next day. My husband has been so sweet even though there is nothing he can do. My coworkers as good as there intensions might be I am tired of the question "How are your headaches doing? Do you have a Headache today?" Thanks for this sight and reading my message.
Kimberly <yidk@hotmail.com>
Manhattan, KS USA
Thursday, February 24, 2005 at 01:31:25 (EST)

i'm 34 , been suffering from age 28 to present
rick a <xrabed@yahoo.com>
bridgeport, ct USA
Wednesday, February 23, 2005 at 14:27:48 (EST)

I'm dying... I'm one bad week from lossing my job, I have not had a good night of sleep in six weeks, and no drugs seems to work. I went to the Doc today, they mention cluster headaches, I had never heard of this. I work in surgical sales, I thought it was just tension, but now I can't function. My left eye spasms, you call tell people don't want to talk to a rep when they are sweating and spasming. I have tried all types of drugs, I am going through a bottle of Exedrine every couple of days. How do I get through this cycle? What over the counter meds can help? I'm 27, this is no way to live. I can feel my neck tighting, another headache on the way. HELP.
Mark <mbaker6060@hotmail.com>
Chicago, IL USA
Tuesday, February 22, 2005 at 17:58:12 (EST)

Hello fellow ch. I have written here many times as I have been a ch for 5 years now. I am on my cycle now, thought I was off, so tapered back my verapimil...what a mistake. I have had ch every year for the last 5 years, but this time seems different. There are more of them, they do not react to the meds they way they used to, and now I am going on my second month, they only used be one month. My left nostril and left upper teath now also get really sensitive before the onset of an attack, that is my only warning...if I take a zomig at this sign, I almost never get one...but my stupid insurance company says they will only pay for 12 pills per month. Sometimes I have up to 5 attacks a day, so I ask, what am I supposed to do then...an seriously the answer I got was "your gonna have to ride them out..." I am so tired of everyone being so ignorant to what a cluster really is, maybe we need to rename them to, "Bash my head into the wall, to knock myself out because the pain is worst that you have ever felt headache" maybe then the doctors would take notice and understand that this is serious. This cycle, because nothing was working at all before, I resorted to trying Imitrex, I can tell you that if you catch your cludser in time, it is a miricle. I get relief in 10 minutes if I catch it soon enough...if I don't, it is a wasted nasal spray. And guess what, I can only have 6 of these per month. Just a hint to anyone that has used verapimil and it used to work, I went to the dr's 4 times in one week for ch's, each time they said my blood presure was okay, so I up'ed my dosage of verapimil from 360 to 540...guess what, the dr would never have okayed it...but as long as I am at 540mg per day, clusters stay away. And last but not least to the person that wrote in last asking if you have CH's, one simple question will answer if you have them or not...When you have an attack, do you move around recklessly, cry, scream, and think to yourself that if you had to endure this everyday you'd rather be dead; but your only saving grace and hope is that this one headache, this one cycle, this insane pain will end, and you won't have to face it again, at least until the next cycle hits? Thank you to whom ever put this website together, for without it, I'd be at the mercy of doctors whom have no idea what is going on with me. Thank you.
Duane <baumgartnerd@hotmail.com>
Vancouver, wa USA
Tuesday, February 22, 2005 at 00:29:49 (EST)

Yippee!! After 32years of living with cluster headaches, it is good to find this site. Just finished my latest bout, and hoping for a long break before the hell returns. A recent change of Doctors has meant I have a new one to educate!! I look foward to being involved with the site. Pete.
Pete Ticehurst <ticehurstpete@hotmail.com>
Croydon, England
Monday, February 21, 2005 at 18:37:19 (EST)

My doc thinks i have clusters. Had migranes most of my life , but these are worse. Had what i thought was a migrane for the last two weeks but last night the pain behind my eye was so bad i couldn't even move my head. I thought my head was going to literally explode. It finally subsided and i fell asleep. I was scared to death today to do anything (it's my husband's and my 23rd wedding anniversary) Does this sound like clusters? Not really sure i want to know.
jeanene radake <rradake@charter.net>
USA
Sunday, February 20, 2005 at 21:05:29 (EST)

his comming July is two years now i discover this sight in my despration to find help for this horrow i have been going through for 43 years August of 2003 i had given up hope i DC all medication hoping that death would come knocking.a friend came to see me and convinenced me to try a natural remedy she heard about so i gave it a try after taking this natural product more than 5 time the recomended dose in four and a half days thank god i am still headache free.You see my cluster last for 11 month they call mine mega cluster ,one for the lenth of my epesode and 2 i gets it on both sides one side last five and a half months anthe other side last bfive and a half months.i came back to this sight and told you all about this and to my surprise no one i belive took me serous, P lease i know what you all are going through give this a try you will be glad you did you may contact me by e-mail or by phone at 305-254-9686 God Bless Olive
Olive <oliveedwards@msn.com>
miami, Fl USA
Sunday, February 20, 2005 at 12:20:34 (EST)

I have been awway from the siste for a few years. When last here I talked about the use of relaxation (taught to me by my dentist) being able to diminish or help control the depth of pain felt. I just started a cycle a week ago and although I was fairly succesful with relaxing, last night was the worst I have yet experienced. I have tried to eliminate all medicine but last night I relented and I suspect that was the cause of the headache lasting five hours. Fortunately I am 72 and retired so I am able to make my own schedule. When I worked I had to leave many times. If you are interested ihe relaxation plez email.
Tom Blower <trblower@iwarp.net>
Allenton, MI USA
Sunday, February 20, 2005 at 09:02:46 (EST)

Hi everyone. I'm new to the site having spent the last few nights sitting up with headaches when I've never been one to suffer with them before (just the odd one very occasionally) I decided to do a bit of research and came across this site. This is now the 4th consecutive night that I've had these headaches, always worse late on when I go to bed and lie down (tonight it wasn't so bad at first but it woke me after an hour and a half). It is the same place each time, round my left temple, and my eye gets watery and sore. I've also noticed that my nose has been quite congested and, at first, thought it was just a cold that I had recently returning - now I realise that it is probably connected with the headaches. I am 37 years old and suffer with other medical problems (asthma, arthritis, spinal trouble and, although it seems to have passed in recent years, have a history of epilepsy). I have been reluctant to see a doctor about this new problem because, with my medical history, I feel as if I am sounding like a complete hypocondriac. Now I'm not so sure - maybe I should go see one. What does anyone else think? You all seem to have more understanding of this problem than me. Any advice would be appreciated.
Kath Keir <allankath@hotmail.com>
Morecambe, Lancashire UK
Saturday, February 19, 2005 at 23:38:35 (EST)

It started again last night. He hasn't had an attack for 3-4 years. I woke at 6:30 this morning and he wasn't in bed. At 7:05 he staggered back into bed. He'd been up since 4 with the headache. In desperation (do we all live this way?)I googled the words and found you people. I can only hope he will look at this site when he finally gets back up. He is very stubborn and ALWAYS suffers ALL THINGS in life alone. He is 53, has suffered from depression his whole life. I found info 3-4 yrs ago that convinced me he suffered from cluster headaches. He read the data and agreed. The Dr., of course, said "Oh, those are rare, you can't be having cluster headaches." But he gave him imitrex pills. He told me this a.m. they didn't do much good. Now I have to try and convince him to read this site in detail. Through the tears I can see a light. I will keep at him to find a way to move forward in his attempt to treat/deal with this. The descriptions of head banging, tears, crushing your head with your hands are all too familiar. The worthless insurance companies and drug companies, uninformed Drs., apathetic medical establishment.....Supporters get depressed too. We are so powerless to help and that wrenches our hearts and enrages our being. Thanks for doing what you do!
Luanne
Evans, CO USA
Saturday, February 19, 2005 at 11:30:53 (EST)

I suffered for many years with cluster headaches, my saving grace was the Michigan headpain clinic in Ann Arbor Michigan.I have been one of the lucky people that oxygen helps. What I am going to say may not work for everyone but it has work for me for over two years. Evey time I am able to donate blood I do, this seems to prevent my headaches from comming into cycle. If I wait to long to donate blood my headaches WILL come into cycle, but going ASAP to donate blood knocks them out. I am on Depakote and verapimil for control through the clinic, but find that the blood thing really works for me. Try it what have you got to lose?
Earl H Davis <ehd426@aol.com>
Battle Creek, MI USA
Friday, February 18, 2005 at 19:59:43 (EST)

Ive had clusters as far back as I can remember. After checking with my parents, and the old family doctor records it appears they started around 1978. When the bad ones hit it actually caused me to hyperventalate, scared me 1/2 to death. I would usually get them in the winter and spring. From about 1982 through 1987 I cant remember having them. In late 87 started getting them again about 2 month cycles. They went away in 91 and then returned again in 92-93 time. Have been episodic since then 3 month cycles with and 2 month without. I am in 2nd month now praying for the 3rd to come so it will stop for a while. Was actually diagnosed with cluster headaches in 1994 from a doctor that has since retired. Until I found this site I was alone with the pain because my wife and rest of my family have pretty much blown it off saying I was wanting attention. At least here there is others that know what I am going through and really want to help. Thank you all.
Mike <son_of_billybob@yahoo.com>
Tx USA
Friday, February 18, 2005 at 19:53:29 (EST)

Be warned..."Lurker" below me has Migraines and this is a Clusterheadache site. when that was pointed out....well, see below! ............................Jonny
Jonny <jonnymule@comcast.net>
Boston, MA USA
Friday, February 18, 2005 at 18:30:24 (EST)

Be warned! If you go to the CH.com Message Board, there are many hypocrites & backstabbers. You have been advised.
Lurker <onequarter@aol.com>
Smalltown, HI USA
Friday, February 18, 2005 at 11:33:34 (EST)

Hi there was told a few hours ago that I was suffering from cluster headaces so I did a web search and came here thank you for a great site x
Joanne Davies <glennjo39@msn.com>
uk
Thursday, February 17, 2005 at 18:19:37 (EST)

It's 3 in the morning. My wife and children sleep as I continplate my condition.My wife, without her I'm lost. Seems it's always the inocent who pay the most. The only thing that keeps me from redecorating in brain matter is not wanting my children to find me that way. 23 days in a row now. My resistance wears thin. My greatest fear is the possibility that somehow this curse may visit one of my kids.I here the desprate calls, trapped in these transparent walls. They echo thru the endless maze of halls....
Jeff
WV USA
Wednesday, February 16, 2005 at 23:57:53 (EST)

Hi there!! i am sooooooooo glad that i have finally found out that i am ................................... not alone!! (duh) everytime i recover from an excruciating attack, i tell my friends " hey i have seen hell, have you".. like some sorta marketing catch phrase.. lol anyways.. great being here... hope to chat with some interestin clusterheads here.. guess what? i think i have a shadow..!! oopsie.. standby people, i am the mask! hehe
Gautam Sharma <clusterhead@rediffmail.com>
Chennai, India
Wednesday, February 16, 2005 at 11:24:22 (EST)

My headaches started in 1982 at age 34 but compared to some of the descriptions of the pain that I've read on this site I must say mine have never been as severe as some. I went through the usual 2 to 3 years of mis-diagnosis until I found a doctor that knew it was cluster headaches. I had an MRI to rule out brain tumors and tried various drugs like Paxil and Varapamil. He finally mentioned oxygen as an abortive and Predinisone to heal the inflamed nerves and blood vessels faster. I have to agree wholeheartedly with the posting in the Statements from O2 users about the need for rapid and pure doses of oxygen. I too got no relief until I took the mask off the tube altogether and stuck the tube straight in my mouth and then filled my lungs with pure O2 turning the valve on the tank off and on for each inhale. I never had to go over 5 minutes with this procedure. I am so thankful I have an O2 welding tank in my garage as the flow rate on it is fantastic. It gets me started until I can get a prescription for medical O2. As for the Prednisone, it seems to shorten the cluster from and untreated 2 months to about 3 weeks or less. I am more suseptible this time of year and the cluster I am just getting over started about 3 weeks ago. I hope this helps. Thanks
Bob Maassel
Ft Wayne, In USA
Tuesday, February 15, 2005 at 22:43:34 (EST)

Have suffered since 2002
Ron Stegman <ron.stegman@med.ge.com>
Frederick, MD USA
Sunday, February 13, 2005 at 21:15:22 (EST)

Wish i had more time to spend on line. I read all the stuff you all put on this site. Poring out your grief and anger for something that you have no control over. It takes your hole life from you. And when it stops if it dose you spend years trying to put things back together. Every thing had been taken from me at one time i was living in my car. It s doesn't feel good when the cops find you in the middle of the night. Most of them were pretty nice. This is what i call a cluster in a car. The barrel roll Man did that suck. I bet when someone seen me it must have look like a pig trying to get out of Penn. Yes people i have seen it when i was a kid that poor pig knew it was it last day he was screaming and fighting to the end, I look just like that pig when i am having a cluster headache I'm on all four legs screaming and snorting banging in to the fence the wall with my head but it never my last day mmmmm what up with that. Hay i have many many more stories to tell. Say on this site and you well see them ps have a cluster free day
john stockwell
greenville, NH USA
Sunday, February 13, 2005 at 16:35:15 (EST)

Hello fellow CH suffers. Please excuse my spelling. I'm horrible at it and this thing doesn't have a spell check. I'm a white male, 48 years old and have been suffering from CHs for over 13 years. My story is much the same as yours. I've flopped around on the floor like a fish out of water, slamming my head on the floor, kitchen cabnets, what ever was close by. It was several years before I was prescribed O2 by my (at the time) Kaiser neurologist. It worked/works on only 10 -20% of Clusters and only if I catch them early enough. Back then, when O2 didn't work and the Cluster escalated, I would either have to ride it out or on very rare occasions would go to the emergency room (hoping) for some kind of pain injection. I was always treated like a durg addict putting on an act to get a "fix". And this was from my HMO that has my medical records. A couple of years later under the care of a new neurologist, I was prescribed the class 2 controled substance, Dilaudid in the 4mg pill. If my cluster escalated past what O2 would treat and/or I was sucking up that oxygen for more than 10-15 minutes without relief, I then went to the Dilaudid. It works on an additional 20-30% of my Clusters. If they escalated beyond that, I just had to ride it out. Most of the time,in the mild to medium Clusters, the Dilaudid works well when the O2 fails. Sometimes the Dilaudid doesn't completely knock out the medimum level Cluste but numbs enough that it's much easier to ride out. On Jan. 13th, '98 I had a tripple bypass. At 41 years old. How about that! After the surgery and because my heart arteries had been rebuilt, my doctor allowed me to have this fairly new med, Imitrex Statdost injections. That worked like a charm! Wonderful to have but can you imagine those suffers who have no insurance and must pay $45 per shot for that stuff. Sometimes I/we need 3 shots a day. For me, the Imitrex will sometimes leave behind what I call the "bruise". This happens only in the monster, grand mal Clusters. It's no fun but a hell of a lot better than riding out a monster without benefit of the Imitrex. The Dilaudid will sweep away the "bruise" left over from a Monster knocked down by Imitrex. Now that I have these 3 lines of defense, my cycles, which usually last 1-3 months are somewhat manageable. I'm horrified at the prospect of loosing my job and thereby, my medical insurance. What's almost as bad is the attitude from the HMO. It's not happy about dispencing as much as 30 Imitrex injections a month at $45 list price. Additionally, given the current socio-political climate, they're getting very stingy with narcotics. The pills work well on about 30% of my Clusters. But if I don't have them, I must go straight from O2 to injections. Yes, Dilaudid is very physically addictive after 2 to 3 weeks of daly use. But the 3 to 4 days it takes to detox when the cycle ends is well worth the benefits. I've tried every blocking med under the sun and none of them work. What did seem to make most of the Clusters in any given cycle milder (and what wasn't listed on the survey) is Lamictal 100mg pills at between 200 & 400mgs per day. It also changed the charecteristics of the the cycles which use to last 1 to 2 months on, one month off, to 2 to 3 months months on, 2 to 5 weeks off. I credit the Lamictal with lessening the amount of the monster Clusters during any given cycle, so again, it's worth the longer cycles and less time off. My doctor tells me that as I move beyone 50 years of age, the Clusters and their severity should start to diminish. I can only hope that's true. Before I began to suffer from these things, I had a very high threshold for pain. Now, I'm a whimp who will do almost anything to avoid it in any form...Thank you for allowing me to share my experience with Cluster Headaches and best of luck to all who suffer.
Neil Brunnenkant <vettebpi@att.net>
Los Angeles, CA USA
Saturday, February 12, 2005 at 21:31:18 (EST)

Well, I wrote here a few days ago, I was away on business and supposed to be there for at least another week, but now I am home. I had to come home because I couldn't perform my job...I have been getting CH everyday, right when I am supposed to be out meeting with clients. How am I to trust that I won't be in with a client and get that dreaded sensation? I had to pull over at a rest stop on the way to the city I was working in because I got one...I think I may have scared a few people there. My onlt saving grace here is that like a lot of you out there, I have one person that truly understands my pain, she like me hopes that everyday is the last of this cycle, until next year. This site has become a great comfort to me as I was stuck in my hotel for a week, scared to venture out more than a few minutes away. Everyday in the afternoon, and every night around midnight. My regular meds are not working...it's 2:30pm and the CH has not come yet, and am hopefull that it's all over. Everyone that is going through thier cycle, find comfort in the fact that it will pass, and life will go on. My thoughts and prayers are with all of you, as I know yours are with me. God Bless...
Duane Baumgartner <baumgartnerd@hotmail.com>
Vancouver, WA USA
Friday, February 11, 2005 at 17:27:36 (EST)

I am the wife of a sufferer. These terrible things started about two years ago.They just recently told us they were clusters. I wish there were more the doctors could do for him! Its so hard to believe that with all the medications and technology now that theres no more he can do.It hurts me so much to see the man I love hurt so much and not be able to do nothing but sit there and watch him. I feel so helpless! I pray every second of the headache that God take away if not all then some of the pain. I would even take half of the pain if I could. I hate it. we are into the fourth week or so . I hope to God it ends soon. Such a good man doesnt deserve this. Im sure most wifes or husbands for that matter feel the same.
kim Keppler <k.keppler@sbcglobal.net>
St. Louis, Mo. USA
Friday, February 11, 2005 at 13:57:32 (EST)

Hi everyone I wrote in yesterday but I started to get another attack so I didnt get to say what I needed to. I have suffered this pain for over 20 years i was only diagnosed 5 years ago seens then I have tried oxygen, verapimil, steroids, imitrex and the list goes on and on. I am currently working in Angola on a diamond mine and suffering BIG TIME it wont be long before I lose this job but it wont be the first nor the last as if you not a sufferer nor live with one you will not understand most people think I'm just looking for a way to excape work I wish they would see me in my room at 2 a.m. The questions I have is I find that by excerting pressure with my hand and fingers to the swollen vein gives me some sort of relieve but is this in any way dangerous as at times It feels as if Im going to damage something. I would also like to hear from any person who has been cured from this dreadful pain the only thing I have not tried is acupuncture but will be giving it a try once I go on leave its my last hope as I have spent most of my money looking for a cure. Please write to me if you have any advice as I am in desperate need of help cheers for now
DERRICK BEGGdd <derrick_begg@yahoo.com>
cape town, western cape South Africa
Friday, February 11, 2005 at 13:30:03 (EST)

I have been suffering with cluster headaches for almost three years. I have been to doctors and haven't had much success. I have tried medications and the sideeffects were too much. I believe magnesium supplements, lots of water, and dietary changes have helped. I am interested in hearing about other remedies. thanks. I would like to add that these headaches have really screwed up my life.
James Keaton <JamesKeaton1@hotmail.com>
Marcus Hook, Pa USA
Friday, February 11, 2005 at 13:28:27 (EST)

My name is Christine i have suffered clusters for a number of years, but only in the last 18 months have clusters become chronic. It is well over 12 months since i have had a single night free of cluster headaches. i also suffer from severe migraines, i am looking for any one who is in a similiar position or even any one with ideas support etc. It seems to be a very lonely world, when you suffer from clusters does any one else feel the same. Would love to hear from any other sufferers.
Christine Gawne <christinegawne@manx.net>
Ramsey, isle of Man United Kingdom
Friday, February 11, 2005 at 05:08:36 (EST)

Hi, I'm trying to reach Carol in Georgetown, Ontario Canada. For some reason I am not able to e-mail you back through yahoo. My brother is more than happy to talk to you, perharps you can try e-mailing me back with your number. only a thought. I've been trying like crazy but it's not responding. Hopefully you will see this message. Thanks ALice
ALICE EUSEBIO <JOVINEX@YAHOO.COM>
Mississauga, ONT Canada
Thursday, February 10, 2005 at 14:37:43 (EST)

HI I AM SO GLAD I FOUND THIS SITE I HAVE SUFFERED SINCE THE AGE OF 11 IM NOW 37 I WORK IN THE MINING TRADE AS A METALLURGIST I HAVE LOST MANY GOOD JOBS BEFORE I HAVE TRIED ALMOST EVERYTHING I COULD GET MY HANDS ON NOTHING SEEMS TO HELP ME THE ONLY REASON IM STILL ALIVE IS MY PREGNANT WIFE AND MY 5 YEAR OLD DAUGHTER WHICH HAS GIVEN ME THE SUPPORT I NEEDED THROUGH THE SUFFERING TIMES NOBODY AT MY WORK SEEMS TO UNDERSTAND. I WAS ONLY DIAGNOSED 5 YEARS AGO AS ALL THE DOCTERS I WENT TO HAD NO IDEA WHAT I WAS SUFFERING AND THEY KEPT FEEDING ME PAIN KILLERS WELL I CONTINUE TO PRAY THAT ONE DAY THERE WILL BE A CURE IN THE MEAN TIME I JUST WANT TO GET THROUGH THE NEXT ATTACK. IM GLAD I HAVE FOUND THIS SITE AS I THOUGHT I WAS ALONE BUT I WOULD NOT WISH THIS PAIN APON MY WORST ENEMY IF THERE IS ANY ONE OUT THERE THAT COULD GIVE ME ADVICE I WOULD LOVE TO HEAR FROM YOU CHEERS FOR NOW DERRICK AT derrick_begg@yahoo.com
DERRICK BEGG <derrick_begg@yahoo.com>
cape town, south africa South Africa
Thursday, February 10, 2005 at 14:15:51 (EST)

Hello all, I have had cluster headaches for almost 4 years now. I thought I was lucky this year, my normal month is August, which came and went...I was very happy. Until this month hit...I have already had 4 headaches in the last 24 hours, I have a new doctor which I don't think understands the severity of the pain that I feel, I am out of town on business for the next two weeks, how am I supposed to work like this? I try to explain to people who what to know what is the matter with me, and everyone always says "I understand, I get migrains" I have never had a migrain, but I have to believe these are worse, aren't they? How do you explain to your boss that I need to go to my room for and hour and a half, when your supposed to be working? What do you tell your work mates, when they think it's just an excuse? It's not...it seems this time is worst that the times before...I am getting panic attacks during my episodes now, I feel like I can't breath, I thrash around, lay down, get back up, pace around, put cold water on my face, load up on pills, only to end it all exhausted and unable to keep my eyes open. I am on 180mg of Verapimil two times a day, and 5mg of Zomig when I get the headache...I am wondering about Imitrex injections, but am afraid of "rebound" headaches...can anyone let me know thier experience...maybe you were in my shoes once, does the injection work...Thanks. baumgartnerd@hotmail.com
Duane Baumgartner <baumgartnerd@hotmail.com>
Vancouver, WA USA
Wednesday, February 09, 2005 at 22:03:35 (EST)

After a three year span of nothing, the devil is back. I thought I had beat him down and he was gone forever. My saving grace is my beautiful and supportive wife, Stacy and my three beautiful daughters, Kaura (16), Mylisha (13) and Jordan (8). Without their support and absolute love for me I know I would have been sent to the grave already. Thanks ladies! Daddy is still Daddy and will always love you. Thanks also to all of you out there that "really" know the devil as well. We will ultimately prevail in our pursuit of destroying him someday. Till then, stay strong and fight the devil back!
Sean Lanegan <stlsll2@cs.com>
Columbia, s\ USA
Monday, February 07, 2005 at 22:45:24 (EST)

Hi i am 17 yrs old and i have been suffring for 6 yrs now and i have tryed evrything. The doctors don't have a clue how to help me! and my boss dose not under stand, she has no clue what i am goin through! MY LIFE SUCKS!!!!!
sophia <DOGWOMAN@TISCALI.CO.UK>
Petworth, UK
Monday, February 07, 2005 at 18:08:03 (EST)

Now iam 32years og age and it started at the age of 18 . for almost 10 years i was told by doctors that its migrene, through this website i came to know i have cluster . No doctor can traet this pain here in pakistan. and i have stopped all type of medicines now .and hope someday it will automatically go offffffffffff.
Ayzaz <ayzaz@hotmail.com>
lahore, Pakistan
Sunday, February 06, 2005 at 13:18:01 (EST)

I have been suffering from clusters for over five years now. I have cronic clusters and have been taken out of work by my Doctor. I have been on so many drugs that I do not have any Idea what each one is doing for me or to me at this point. I am seeing two differant headache specialists at Spalding and at Mass General. My primary care doctor was very good about getting me into this clinic. This is the best site I have seen. Very informative. The newest drug they are going to put me on is topomax. This is after they almost killed me with Lithium. I would not recomend Lithium to my worst enemy. There are way too many side effects for the little bit of good that came out of trying it. I hope to hear from others and maby get some ideas or tade some ideas anything can help and not much could make me feel worse.
Jason <jaysee28@aol.com>
Marlborough, ma USA
Thursday, February 03, 2005 at 19:00:17 (EST)

Just become a cluster head, have perscription drugs, given up drinking, consuming litres of water, just holding on to my partner and rejoicing (I think ) that i don't have an evil brain tumor!!! Is remedial massage any good?? ciao lisa
lisa <helgakillerwaitress@yahoo.com.au>
Sydney, nsw Australia
Wednesday, February 02, 2005 at 23:19:10 (EST)

Hey all, After about 18 months of pain free days the headaches are starting back up. About 5 AM the relief from comes the attacks that started at midnight, and then they come back right around 10 AM and last until about 3 PM. This is completely different schedule from my last battle with them. They are beginning about 1 hour earlier each time, and lasting for about an hour longer. Keep your head up everybody, as hard as it is. -Jeremy
Jeremy <Jeremy.Camidge@gmail.com>
Rochester, NY USA
Wednesday, February 02, 2005 at 12:58:01 (EST)

Just needed to come back to the site .I'm about to enter my cluster cycle I can feel it.The thought of going through this again for the next 8 maybe more weeks is freaking me out on it's own .Been there before I know ,doesn't make it any easier tho.Having used oxygent,betablockers etc etc .If anybody has tried anything new that helps Please pass it on .. I'll cope with it because I have no choice ,but then again this is me just about to start it again . My thoughts are with you as only fellow suffer's can really know what it's like
Debbie <debbie1310@msn.com>
Northants, UK
Tuesday, February 01, 2005 at 16:15:13 (EST)

I am 42 and started around 20 years old with my CH. They come like clockwork around every 2 years for 2 to 3 months. I never knew what they were until I researched it myself a few years ago. My doctor wanted to give me a preventative - high blood pressure medicine but I didnít feel it would work during a cycle so I just bought excedrin migraine and continued to read. Over time I heard about ice, which helps, and I also tie a bathrobe tie as tight as possible around my head like a ninja, until my head becomes numb. That also helps a little. It brings the pain from a 10 to a 7. Last week when my cycle started getting to peak again I got online to see what else I could do and found a sight called SinusBuster. I bought the stuff and got it yesterday. It worked instantly but didnít eliminate the headache all together but brought the pain to a manageable pain level of 2 to 3 which the ice pack took care of. I had to use 6 squirts instead of the recommended 1-3 but I would use the whole bottle if I had to. After using it before bed last night I slept all the way thru til 7am with no headache at all! I got up and was so excited but then I started feeling the dreadful twinges. I instantly used more nasal spray stuff and thru the ice pack on. The headache never got past a level 3 and went away after 15 min. Today is only my second day using it but I felt I needed to share this with anyone with a cluster headache because I would want to know if it was me. It was $9.99 and worth every penny. Iím carrying it around in my pocket like itís gold. Maybe itís a coincidence but I donít think my cycle is on itís way out yet, itís only been 3 weeks-I think the stuff works. You definately need more squirts than they say and you need some big squirts which burn but itís better than a CH. Also, donít forget to shake it. Let me know if it helps. Renee
renee
saugus, ma USA
Tuesday, February 01, 2005 at 10:13:26 (EST)

Hi, fortunately for me I am not a CH sufferer but my brother is and after a two year break they are back. For now they do not seem to be coming every day but when they do they hit him twice a day. Probably not as bad as some of you sufferers out there. I really sympathize! For my brother what has worked until now is the IMITREX injections, he's on 0.5ml and it kicks in in about 5-7 minutes of a full blown headache. May be worth a try for some of you out there although they are very expensive here in Ontario Canada. Good luck to all out there!!
Alice Eusebio <Jovinex@yahoo.com>
Mississauga, on Canada
Monday, January 31, 2005 at 12:28:28 (EST)

Reuben I can't email you so am posting here. If you go to www.clusterheadaches.org.uk and join OUCH UK there are quite a few other people of your age in the UK who suffer from CH. The Helpline (number on the website) can give you all the advice you can need. Wendy
Wendy Howe <nospam_ch@howassoc.co.uk>
Tring, England
Sunday, January 30, 2005 at 19:39:19 (EST)

Hi, I am eleven and am suffering from cluster headaches are any other kids out there suffering too ?
Reuben Jackson
UK., England
Sunday, January 30, 2005 at 10:49:32 (EST)

Right now the dread I have been feeling all day of the night ahead has been eased by finding this great website - thanks eveyone! It believe I am in week one of my third bout of CH in five years, the last one being 18 months ago. I seem to have classic symptoms of being wakened each night at around 1.00AM by unbearable pain which lasts for about 3 hours. My GP diagosed CH a few days ago but then left me high and dry in managing the pain. She has recommended a combination of 80mg of an anti-inflamatory drug, and also paracetemol, which so far has had no effect ! Can anyone help in confirming that I am waisting my time with these drugs ? When I am contemplating sawing my head off at 2.00AM tomorrow morining, I will take comfort in the fact that I'm mot alone. Any contact and advice from fellow sufferers will be greatly appreciated. Bye for now and keep up the fight ! Mark.
Mark Short <markshortandco@fsmail.net>
Sheffield, UK
Saturday, January 29, 2005 at 13:49:05 (EST)

hi everybody, i had my first attack cycle in 2001 at the age of 41. you can see my original post if you wanna dig thru the archives. been cool since. for 3 years every time i felt a bit headachy i would run to the mirror and see if my eye was getting red and droopy. now, 40 months later, they're baaaaaccckkkk, but quite different. the first cycle was unbelievable pain at 4 p.m. every day for a week, followed by a tolerable headache for 2 weeks after. now i get no red-eye warning, but wake up at 2:30 a.m. with a whopper that lasts until 7. this has been going on for the past 3 weeks and they seem to be getting worse, but are not near as powerful as the ones back in 2001. i sure hope they stop soon and are not just ramping up. naproxen, ibuprofen, aspirin and vicodin don't touch it, but a hot shower lets me get back to sleep. i was pleased to see how many other people recommend that same remedy. good vibes to you all.
glenn grant <zorbic@aol.com>
new york, ny USA
Friday, January 28, 2005 at 15:33:03 (EST)

I just started having my cluster headaches again about 2 weeks ago after two years without them. I read somewhere they are generally among men ages 20 to 40 but I am a 42 year old female. I thought I had grew out of them but they're BACK . They sort of progressed slowly so I thought I was ok but the past 3 nights have been horror and my head is sore all day from the nights pain. I find some relief from ice packs, which aren't big enough to cover the whole side of my head and I was telling my husband that I wish I had an ice hat. He said "You're always sewing something, why don't you make one" I am seriously thinking about it but I've been too drained to actually do it yet. I also find relief by tying a bathrobe tie as TIGHT AS POSSIBLE around my head until the top of my head becomes numb. Today while web surfing I found a website having to do with a pepper nasal spray and ordered it. I can't wait to get it and try it. I pray it works because I am only getting by because of the anticipation of it. It's called SinusBuster and supposedly was found effective accidentally by a cluster headache sufferer when he was sprayed with pepper spray. Hell, I'll eat a jar of red hot peppers if it takes away my pain. Has anyone tried it? Does it work? Has anyone tried squeezing pressure points in the web of the hand between the thumb and finger? I didn't have enough strength in my hand to put enough pressure so I used a pair of pliers. I don't know if it really worked on the headache but when my husband massaged my hand it seemed to help. I go to bed every night prepared with ice pack in thermal container, aspirin, water, pliers and bathrobe tie all within my reach. I don't take any prscription medication, I never have. I don't want the side effects so I try my own remedies. I will let you know about the pepper stuff, it's all natural. My husband was concerned but I said what's worse, some peppery nasal spray or taking a hammer to my head? Because that's what I feel like doing. Anyway, I hope I have a good night tonight and you do too. Try the ice. Renee
RENEE
saugus, ma USA
Thursday, January 27, 2005 at 22:14:03 (EST)

Hi,everyone.My wife has been on here but my first time.I am going to Greensboro headache &wellness center tomorrow,for the second time. Ireally feel like I am wasting an 8 hr.trip.Has anyone been there?
PawPaw Butch <bcdjgizmo8>
Waynesboro, Va USA
Wednesday, January 26, 2005 at 20:19:35 (EST)

first off I WOULD LIKE TO SAY THANKS AFTER 12 YEARS OF BEING ALONE I FOUND THIS WEBSITE The only time without the demon over 12years has been maybe 6mo total time about 5 to 8 daily so life aint been to great at this point if thay get to bad its the hospital for me and the good stuff I TAKE IMITREX FOR MOST PAIN BUT SOME THEY JUST DONT WORK sorry about the caps Im new every day its lithium topamax amitriptyline they really dont work all that much keeps the DR. happy Ill write much more later after 12 years do I got some good stories to tell I also have a book about done just need help getting it to book form by the way Im 55 years young again I say thanks alot and Iwill be back mostlikely more than you wantto hear from bigdaddyDave
BIGDADDYDAVE <GRAVCR3@AOL>
POMONA, CA USA
Tuesday, January 25, 2005 at 17:05:02 (EST)

I guess when I signed on this website I was hopeful of finding that there was a cure for the pain I have. So far there is not a lot of hope for ditching the headaches that I have. I have been under attack since Nov 2004. Started with as many as five attacks a day, however the frequency has diminished and now I am having one or two. This is the result of some severe medical treatments, prednisone and sansert. I have been using advil (400mg)and Ivermex (20mg)as pain killers. These work in time, just don't like to eat as many as I have to to stop the attack. Guess I feel that I don't have as bad a time as some of the others that I have read about. Feel for everyone that has this affliction
Ridgewalker <ridge_walker_north@hotmail.com>
Prince George, B.C. Canada
Tuesday, January 25, 2005 at 00:45:46 (EST)

I have just found this site. I am still reading and crying. Others know how this pain feels. I need to send this info to my family members who have had to see me in this pain--I have never been able to describe the pain to anyone as well as it is described here. If they read this they will know. Thanks for this site.
Donna <dlarsen825@att.net>
Atlanta, GA USA
Monday, January 24, 2005 at 18:48:50 (EST)

i left a message on the board around christmas,since then i moved to florida jan 5 well since then i am getting blasted with these goddam headaches 36 shots of imitrex later i am drained,i currently take 240mgs of verapamil,i went to see a vascular surgeon on the advice of my brother who is a chiropracter, the docter thinks i have temporal arteritis. my brother doughts that analogy. i dont know what to do anymore if theres anybody out there with some answers, please email me god bless everybody with this nightmare.
jerry newman <sebatian642001@yahoo.com>
verobeach, fla USA
Monday, January 24, 2005 at 13:16:41 (EST)

Hi, I am new here and probably not as serious a sufferer as some. I have tried almost everything and have yet to find anything that works, I just came out of a 5 year remission, "DAMN IT" and am currently in a month long cycle, I think. I just wondered if anyone else has the episodes where you wake to "THE BEAST" at about 2:30 A.M., have a 1/2 hour of inconvenience then get to sleep feeling like you have just won, and then get woken up at 5:45 A.M. With the 2nd wave that last for about 6 hours of incomperable agony? please post and let me know because if there are similar sufferers, chances are the remedies will be similar also. MOE. GOOD LUCK EVERYONE and don't forget to turn off the lights.
Moe <mwschutte@shaw.ca>
Duncan, BC Canada
Sunday, January 23, 2005 at 06:04:06 (EST)

I'm still waiting for a referral from my ENT to go to a specailist but from him and everything that I read, it appears that I am suffering from cluster headaches. They started a couple of days after Thanksgiving. After 2 really bad nights, I went to the doctor and was told that it was a signus infection. After 10 days, I wasn't any better and let the doctor know. My thought at the time was that I needed more antibotics. A week later, I ended up in a minor ER just to get stronger antibotics. Finally after spending all this money on doctors and medicines and not solving the headache problem, I went to an ENT to find out that it is not sinus and probably never was. At first it was scary because I wasn't sure what I have and at this point, I am still not sure. Hopefully I will get my referral and see neurologist in the next week. I feel frustrated because when I first went to the doctor, I didn't have a fever, the pain was only on one side, I was not conjusted yet I was told that it was a sinus infection. Some where I read that clusters are often misdiagnosed as sinus. Hopefully, I will be dianogsed soon so I deal with this. A couple of years ago, I had the same thing happen but the headaches stopped in a couple in about a week, so when it started this time, I remembered. It has been 7 weeks for me. I'm glad that I found this site, it has answered a lot of questions.
Susan <susanjewellhughes@yahoo.com>
Tomball, TX USA
Friday, January 21, 2005 at 08:51:32 (EST)

Thanks. Its good to know l'm not alone with these bloody headaches everything on this website l can relate to. Its been a great help.
David Turnley <dturnley@optusnet.com.au>
Melbourne, Victoria Australia
Wednesday, January 19, 2005 at 06:10:11 (EST)

Hi folks after having a clusterperiod from september till end of december i'm free of pain again. Used Oxygen en Maxalt en still use some propranolol 80mg a day.... For those who still suffer. I hope this will work for you too. Greatings, Frank
Frank <helvoirt@supermail.nl>
Netherlands
Wednesday, January 19, 2005 at 03:54:08 (EST)

Well its been almost 3 months for me, no clusters. Verapamil is my wonder drug....... Thanks for all the info.
Benjamin <bennystpete@yahoo.com>
St. etersburg, FL USA
Tuesday, January 18, 2005 at 11:37:59 (EST)

I just returned from Greenesboro headache clinic after headaches since March 04.4 shots in back of head and same old meds!Really burning out on this one.
Butch <bcdjgizmo8@aol.com>
Waynesboro, Va. USA
Monday, January 17, 2005 at 20:14:21 (EST)

I was like a lot of people treated for migraines. Finally diagnosed last year. Have been in remission since then. Exicited to find a site where I can chat with people who can relate to the pain. Husband is understanding, but until you experience this you never know.
Elizabeth <elfp1202@yahool.com>
Quitman, AR USA
Monday, January 17, 2005 at 11:10:53 (EST)

I'm back. Three days no CH's. Is this the return of my remission? My last remission lasted 2 yrs. Imitrex spray rocks!!! To all: stay strong. God bless each & everyone who suffers!!! Peace.
Bob Goodman <bgood28@msn.com>
Brooklyn, NY USA
Monday, January 17, 2005 at 07:56:11 (EST)

Well shit! I have hade clusters off and on for 24 years and was pain free since May 2003 but now they are back :( I have to wait until next Wednesday to see my GP. My GP (same one for 22 years) understands clusters better than any Neuro I have seen so I guess I wait. Hopefully my stash of expired Imitrex injections holds out until then.
FrankF <frankf@nospam.com>
Simi Valley, CA USA
Friday, January 14, 2005 at 22:54:50 (EST)

Hi everyone, I had to "come back home" to this site to help me through another cycle. Two years pain free(the longest remission period ever)and now it's back and as you can see so am i...hope everyone makes it through their cycle unscathed!!!
Dan <killer34672001@yahoo.com>
Minersville, Pa USA
Friday, January 14, 2005 at 19:50:01 (EST)

Hi Everyone! I'm 35 years old and have been dealing with these headaches off and on for the last 15 years. I was diagnosed as having migraines but when I read up on cluster headaches several years back, the symptoms were exactly the symptoms I was dealing with. Since the beginning, my headaches would wake me up out of a sound sleep. As of 6 days ago, they still do. The last bout with these excruciating headaches up until 6 days ago was about 3 - 4 years ago in April. When I had one for the first time I was given Fiorinal and it actually worked but 3-4 years ago it didn't and after going to the emergency room three nights in a row they gave me Imitrex and it has worked beautifully so far! I hope everyone can find the right treatment to help them get through these horrific headaches and hope my treatment will continue to bring me some relief. Good Luck to all of you!
Sue <skoots2d2@aol.com>
Binghamton, NY USA
Thursday, January 13, 2005 at 18:39:57 (EST)

this pain goes on and on!i cant find whats the reason even if i ve been in numerous of doctors.i am 24 and i ve been suffering from 13.i wish to all of us some day we will find cure.regards to everyone
george
athens, greece
Thursday, January 13, 2005 at 06:10:48 (EST)

wow- cant believe i found this website-- also cant believe there are so many other people out there going thru what i am...im 5 weeks into the mild headache all day long,then massive headache behind left eye after 10pm every nite..lasts 4 hrs..i did try oxygen,xylocaine-nose gel- percocet..doctor sez - well not much we can do about this ..you have cluster headaches..no shit sherlock,give me something to knock me out for 6 hrs so i can sleep....the worst part is the walking around in the dark,trying to figure what to do next,when i know i cant do a thing...but endure the firey left eyeball smashing pain for next several hours...oh yeah,then going into work as the boss thinks i was out drinking all nite..i only wish i was....great website !!!
mike
wilmington, de USA
Wednesday, January 12, 2005 at 21:42:26 (EST)

Hi - I am an episodic sufferer - just started a new cycle. Last cycle I found this website and it was a great help to me. Through this site I learned about Magnesium and how that might help, and in fact it worked wonders for me. My Grandfather also suffered from CH (although they called it something else back then) and it kept him from accepting a major promotion later in his life. I wish he were still around so I could ask him more about what he went through. Last night I woke up twice in the night, once with a very severe headache, and then about an hour and a half after that one ended I woke up again with one that wasn't quite as bad. Anyway, thanks for being out there - it really helped me just to find out that there were others out there who know what it's like, and even to find out that it was in fact a "real" illness. Carol
Carol <Plato@Sympatico.ca>
Toronto, On Canada
Wednesday, January 12, 2005 at 14:14:56 (EST)

This sucks!!! I thought I was done with these damn things!!!! I had been as regular as possible. Late summer(August, early Sept) for a month, give or take a week with 4 to 6 per day for 10 years. Then magically the summer of 2002 came and went without a bout, all of 2003 passes without a sniff, 2004 came and went without anything. I thought I was done. Last Monday night I woke up about 4am with "the feeling", I hadn't felt it in quite some time but I remembered quickly. I had Imatrex injections in my nightstand that expired a year ago so I didn't use them.. Fast forward to 6am, I found that even expired Imatrex works. I am two weeks deep and miserable. Reading many of your stories makes me feel blessed to have a good insurance plan. I hate it for each of you that can't treat this because of cost. Last night I wanted to get a sledge hammer and bash my knee just so I might be able to spread the pain. Why are these so bad?
Sean Flynn <sean_m_flynn@yahoo.com>
NC USA
Wednesday, January 12, 2005 at 13:20:39 (EST)

I am greatful for this site. It has helped me understand why I am a suffer of this condition. Though, I am a young sufferer for a woman who started at the age of 11 yrs. I believe there are ways to cope. Please consider ALL methods as an alturnative for help. Every person is different. LIC= Love In Christ!
LMK <lexybug@cox.net>
Chula Vista, Ca USA
Tuesday, January 11, 2005 at 18:15:05 (EST)

My name is Bob. I was diagnsed with clusters about 4 years ago. The last month they have increased and have become more painful. I am hoping to touch base with other suffers. My world is becomming a very lonely place.
Bob Goodman <bgood28@msn.com>
Brooklyn, N.Y. USA
Tuesday, January 11, 2005 at 15:06:51 (EST)

hi to everyone, at last im here, among the understanding! as a chronic sufferer for some twenty years it comes as no surprise to most of you that i've had to deal with this condition with little or no help. it has cost me my career, earned contempt from friends and family to such an extent that im practically an outcast. i have many experiences to share, and am willing to offer my help, such as i'm able, to all.
max bradley <imax@blwsm.wanadoo.co.uk>
uk
Tuesday, January 11, 2005 at 05:27:56 (EST)

Hey everyone! Going on 5 months pain free except for a few warning twinges. Still, I don't go anywhere without my Imitrex and keep the O2 bottles full. For those who are currently in the middle of a cluster, you have my fullest sympathy; I'm 38 and have been wrestling with the demon since 1980. If you're feeling a little low on hope and are in need of encouragement, drop me an email. I wish everyone a pain-free and prosperous New Year!
Joel Juers <joeljuers@aol.com>
St. Paul, MN USA
Tuesday, January 11, 2005 at 00:25:10 (EST)

I was misdiagnose with Sinus Rhinitis and a deviated Septum last year as the cause of my headaches. I just found out a week ago that I have Cluster Headaches. I'm glad for a website like this my work was starting to think I was lying. I have the chronic kind, and thought I was wered for rocking when I went through these spells or taking a HOT shower. I think the kip scale sums it up. "Pain level 10-Major pain, screaming, head banging, ER trip. Depressed. Suicidal." I was just put on Imutrex and hope it works. Does anyone else have any suggestions for prevention and suppression?
Chuck Mabary <chucks10@hotmail.com>
Fullerton, ca USA
Monday, January 10, 2005 at 18:49:39 (EST)

Well chaps it has been some time since I left a note in this space. I thought that I would just mention Verpamil. Some of the evidence from the sites survey shows that it has not been perceived well as I thought it might. I have been on it for the last 2 years - a sufferer of up to 12 bouts per day - 6 weeks on blah blah blah. This year it has helped considerably reducing the amount to 6 - 7 bouts per day and with alot less pain - still has me crying though. The main thing is that my GP changed my dose. I now take 2 tabs 3-4 x times per day but at 120 mg. I asked about this after meeting a sufferer in Majorca last year - as rare as we are I happened to be sat by him by the pool when he was talking to his wife. You know the langauge we tend to use ''Twinges'' ''Attack'' '' has it gone yet?'' etc, etc., when an Imigran auto pen fell on the floor. As like this site we then talked and exchanged information - and one of his suggestions was the dose of Verapamil he was taking. Although he felt the pain he had gained a better control of his attacks (he being Chronic). We still keep in touch and to date, since September he has been pain free, even as a Chronic - lucky bugger!! All the best for now. Regards Guy
Guy Copperthwaite <nikki@wilthsire-copperthwaite.wanadoo.co.uk>
Bristol, uk
Sunday, January 09, 2005 at 10:40:17 (EST)

what do you do if you just cant face another one?
Craig <rossy06@bigpond.com>
townsville, qld australia
Sunday, January 09, 2005 at 04:55:26 (EST)

I am 28 years old and been suffering with this condition for 15 years! Iwas diagnosed last year. A few days before Christmas they came back! I am a mother of a disabled 7 year old boy. I cannot take care of him when I am having the clusters, my husband suffers because he feels helpless and has to take on my responsibilities. Currently I am on oxygen, imitrex and relpax, it's not working. I am going to the doctor tommrow but, cannot get in to see the neurologist for 3 weeks. I found the website yesterday in my despration to find something else to help. Just knowing other people have the same condition helps. I would like to correspond with someone in my city to get some help from local doctors. If you are in my area please drop me a e-mail. Goog luck to all.
Jessica Agate <jessicaagate@bellsouth.net>
orlando, fl USA
Wednesday, January 05, 2005 at 09:56:00 (EST)

Glad i'm not alone..........
Andrť Stubbe <astubbe@caiway.nl>
Stolwijk, Holland
Tuesday, January 04, 2005 at 13:32:11 (EST)

Happy new year everyone. Maybe this is the year that we stop the beast!!!!!maybe we can find a silver bullet. Or in this case a gold one. There is so many new cases it seems hard to believe. What could be going on. Is it that everyone is finding this site? Is it that everyone is getting a computer .Wow what could be going on. Just two years and this site has all most out groan it self. With all are pain itís un thinkable. God never meant this to happen. What the other end of the deal. Do people have unthinkable pleasure. well there right and wrong heaven and hell. I'm starting think what could be happen that new that so many people are getting this. And the first thing comes to me is cell phones or the radio waves they are putting so mush snuff in the air . Just because you canít see it itís there more and more every day. Satellites beaming down at us. All this stuff goes right throw our heads. How do you go after them this is so big!!!. what do i do throw a rock at them. Maybe i can hit them in the head and see how they take the pain. we all know they canít take it no one can . well itís just some more things that are going on in may head to let you all know. ps hope you all have better days. eggie
john stockwell <oracle1960@yahoo.com>
greenville, NH USA
Sunday, January 02, 2005 at 20:30:07 (EST)

Just another Clusterhead for 10 years now.
Jeffrey Kinnunen <kinnu6@hotmail.com>
Greer, SC USA
Sunday, January 02, 2005 at 14:38:21 (EST)

 

 

 


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