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 November-December 2003. 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

Wow, I dont feel so alone, although I guess I am strange being a woman with clusters. Every time I look up info it says clusters are usually in men. Any other woman with clusters, feel free to e mail and to tell another woman about it. I have been free from headaches for over a yr. The only thing that ever helped me get rid of them was steriods. My last batch of clusters, I almost killed myself and my neuro put me in the hospital on a suicide watch. Its a shame I had to get near death to get some help.
christine <Gunitboy@Aol.com>
Sewell, NJ USA
Wednesday, December 31, 2003 at 14:24:43 (EST)

Hello all I've had clusters of miagrain headaches since 1999 and been through all meds u can possibly think of, but the Dr's are still running test and meds, but if any of u out there know's a solution please e-mail me thank u.
Terri Clark <theresahoadley@sbcglobal.net>
Roseville, Oh USA
Tuesday, December 30, 2003 at 18:11:59 (EST)

Hello all I've had clusters of miagrain headaches since 1999 and been through all meds u can possibly think of, but the Dr's are still running test and meds, but if any of u out there know's a solution please e-mail me tsvelvet@yahoo.com thank u.
Terri Clark <theresahoadley@sbcglobal.net>
Roseville, Oh USA
Tuesday, December 30, 2003 at 18:09:15 (EST)

I'm 53 years old and have been suffering with CH since my twenty's. I have taken prednosone in the past and it has worked fairly well. I have found that as I got older the headaches didnt visit as often, Im just starting an episode and I have not had an attack for about 4 years.How about that an advantage to getting older.
Bill <wildbill30108@aol.com>
Naples, Fla. USA
Tuesday, December 30, 2003 at 17:37:30 (EST)

i have had the worst headache for the last 5 years not sure if it is a cluster all the docs say its just a migrain but it never stops is there any relief help ?
jeff puckett <jpuckett02@aol.com>
mcdermontt, ohio USA
Tuesday, December 30, 2003 at 15:33:33 (EST)

i just wanted to thank everyone for the information on the site and the reassurance that suffers are not alone. God bless all and i hope you all find your peace.
bern
ny USA
Tuesday, December 30, 2003 at 11:13:29 (EST)

Thanks for this website i needed some info for court cos i got arrested for having a headache and GP wont help. I,ve had this bullshit pain for last 13 years so I know. Try and keep ya chins up,look for the good times and who knows maybe one day we can all have a proppa life...goodluck..
alan mcdonald <am002e4740@blueyonder.co.uk>
newcastle, tyne/wear england
Monday, December 29, 2003 at 23:00:47 (EST)

this looks like a nice sight for getting some support. i have never been diagnosed with cluster headaches, but have been diagnosed with migrains that noone seems to know the exact cause of, but this sight looks promising to get support for those days, weeks of pain that noone seems to understand
ivory tower <ivory_tower_nj2000@yahoo.com>
vincentown, NJ USA
Monday, December 29, 2003 at 04:07:35 (EST)

This February will begin my 5th year set of clusters. They for some reason seem to hit every February, now they come February and September. The Fear I suppose is the worst. I pray every day that this will be the year that they will stop. I'm not the normal cluster sufferer because I am female and in my early 30's. I have been to neurologist after neurologist. I've taken every preventative and onset drug imaginable. Currently I'm taking 300mg of Topamax, Magnesium, and Folic Acid for preventative measures. Did the same thing last year and needless to say it did not help. Anyone out there have any new concoctions? Trust me I've tried all conventional things ie... accupuncture, chiropractics, water, oxygen, imitrex, cocaine cocktails, depakote through rapid infusion, prednisone, prednisone, prednisone, lithium, indocin, verapamil, lamictil, sansert, elavil, ambien, amerge, zomig, etc........Please Someone give me some hope, I saw a new specialist last month and all he talked about was a Gamma Knife...uh no thank you. I pray for a cure and that no one has to suffer the way I do. May God be with you all. Dana
Dana Bowman <Danabeth@charter.net>
Newton, NC USA
Sunday, December 28, 2003 at 01:34:28 (EST)

I don't know if i'm a CH sufferer or not I do know that it is the worst pain I have ever had in my life. It usually happens when I am asleep. They are not chronic however. I have only had 5 in the past 2 yrs. Is that how they start? Does it mean I have them. Does it mean I don't? I have so many questions. I have read several posts and maybe I missed something. One thing I do know is that I always wish for death when i'm having one. I have cut the tip of my finger off(accidentally), And that was nothing compared to the agonizing pain I feel. I am 22 yrs. old and am in need of help. If there is someone that will write me back I would appreciate it. -Russell A. Estes
Russell Estes <russelle@numail.org>
newnan, ga USA
Saturday, December 27, 2003 at 23:23:17 (EST)

Hi I'm another victim of CH also had it confirmed after a few visits to E.R. this atact is now for a week 4-6 atacks occuring 30-45 min after going to sleep every time I go to sleep. I'm on Triztriptan med.and still very hard to cope. what bothers me is how to get some sleep I have been 12 days without sleep and have a 7 week old baby witch did'nt let me sleep much during this time. I feel I'm about to collapse and found nothing on the web about how to get some sleep. If anyone has some advice for please email me. how long can 1 last without sleep? I try sleepind in day time but get attacked also after15-30 min. of sleep. I hope to heavan for I'm in hell
amos rosner <armusic@bezeqint.net>
tel aviv, IL Israel
Saturday, December 27, 2003 at 14:44:22 (EST)

This site is what i've been looking for years .
Ronnie Byrd <beetle69earthlink.net>
Johnson City, Tenn. USA
Friday, December 26, 2003 at 22:29:07 (EST)

I'm a 41 yr old male and have been suffering from headaches since I was 15. I am not sure if they are cluster or migraine. My mom and sisters suffer from these also. I get between 2 and 20 of these a month and they render me helpless. Cold Ice packs on my eyes and forehead help if I can stand it as you have to literally freeze them out. I have had CT's and MRI's and found nothing. I have spent thousands over the years and no medication has ever had any affect... until now. I tried many different variations of these drugs but only Imitrex has worked. I started out on the 50 mlgrm and am now taking the 100's. I have a $20 copay so I am lucky (I guess) but can only get 9 pills at a time. Sometimes they go within two weeks and sometimes I can make them last a month. I have noticed that smoking and or drinking make the headaches worse. I have tried no caffeine and doing without other possible instigators but there is no rime or reason to these. I truly understand those that think about suicide when they can get no relief as these things hurt like nothing I've ever experienced including back problems. Ask you doctor about Imitrex or those drugs similar as they are all a little different and I tried several before I finally found something that worked. My fear now is that they are starting to not be as effective as they use to be :(
Alan Gray <crockette@hotmail.com>
Pontiac, IL USA
Tuesday, December 23, 2003 at 17:00:12 (EST)

i never knew that there was a station where you could communicate with others sharing the pain. it would have been of benefit had i known. i knew one other person that suffered and he would ram his head against the wall looking for some relief. i never tried it but i wouldnt poo poo it either. his would reoccure every seven days. he jis old like me now and is free as far as i know.
RJ FORRESTER <JIMPAT@SKYENET.NET>
SOUTH BEND, IN USA
Tuesday, December 23, 2003 at 15:37:19 (EST)

Hello, I am 30 year old and I had this pain since 24, I want to share a few procedures that helped me at least lessen the pain intensity. My headache is Right hand side, if I inhale cold water up my right nostril, it stings, this sting stops the original pain for a few seconds, but after 3 or 4 inhales, the pain starts to ease little by little, But don't over do it, and allow an interval of 2 minutes between inhales, or you'll lose the magic effect !! Also smelling a strong cologne, may have the same stinging effect and it also relieves the pain eventually. Lastly, applying and releasing pressure to the ear on the same side of the headache would give you a second of peace. I wish you all the best, I love this site, Thanks. God bless you all CH sufferers.
Nader Magdi <nader73@yahoo.com>
Cairo, Egypt
Sunday, December 21, 2003 at 23:57:29 (EST)

have sufferd since 1991. i go usually about a year without and then get them for about4 months of intense pain
joe viara <highwayl5@cs.net>
east providence, ri USA
Sunday, December 21, 2003 at 21:35:49 (EST)

I recently began suffering from Cluster Headaches. I am a woman where it is not as common. I have given up drinking, caffiene, and over the counter medications, and still they return. I have multiple Sclerosis, and am on an interferon medication so perhaps it is either one of those. Still it hurts!
Marjory <smbaxter@hotmail.com>
Atlanta, GA USA
Saturday, December 20, 2003 at 05:55:21 (EST)

Please Mr Cluster......etc etc for those of you who remember the song Please Mr Custer...LOL I am 57 and I just started getting CH's four weeks ago. Mine fit the pattern of many that I've read here although not as severe as some. I guess it's too soon to tell if it's chronic. I guess we are in the minority...it seems that only 1% get it and not very many my age...no consolation. I have seen Neurologist and he wants to put me on Prednisone, but I'm concerned about side effects. Email me if you have any advice.
Ed <classwit@hotmail.com>
Coraopolis, PA USA
Friday, December 19, 2003 at 19:14:05 (EST)

Hi Fellow CH's I've just "celebrated" my 25th anniversary of CH, started when I was 19. I did have a 3 Year!!! break, and thought it was over, but then.... now I'm in my 4th week, woke up only twice last night and had my dance for about 1 1/2 hours. I start to wear out, and I think I look about 20 years older than usually. I was really happy to find this site, and some people could express so well how I'm feeling. Shocking to read that it could actually be worse than what I have..... to have this nightmare chronic must be unbearable. I greet you all, and lets try not to lose our humor
Ralph Schmieding <schmieding@gmx.net>
Sedona, AZ USA
Friday, December 19, 2003 at 17:50:06 (EST)

Hi! First time visitor long time suffer. It has been over 20 years with the CHs. I've had periods up to a year without them but they always find their way back.I'm going to another nerologis next week, present Dr. really doesn't know what she's doing. She cannot understand the amount of pain I'm having and the consistancy of the attaches. I'm taking Imitrix inhaler which works if I get it up my noise in time but nothing really works when the dumbshit wakes me up. It's been almost two months now and I'm just preying it has run it's course this time - SOON!!! I am also having problems with my Drs, the pharmacy and the insurance people. Last night I picked up my prescription 6 INHALERS THAT ARE SUPPOSE TO LAST ME TWO WEEKS !!!!!! I get these damb things twice a day, seven days a week!!!! I'm heading to the Air Base this morning to get some other stuff. One of the above guys is right - Stock Up On All you can get your hands on during the down periods!!!!!!
Rick Schoenthal <rpscoen@mato.com>
Spearfish SD 57783, USA
Friday, December 19, 2003 at 09:00:48 (EST)

I've just stumbled onto this sight and I feel overwellmed reading the accounts of others dealing with this periodic nightmare. As almost everyone says, there's a feeling of relief hearing someone else describe the very pain that I thought no one else could understand. I will be revisiting this site and wish those who suffer the best.
Brian Clack <brianclack@aol.com>
seattle, wa USA
Friday, December 19, 2003 at 00:34:19 (EST)

Hey all. I'm new here. I've had CH episodes for for 30 years now. I guess I'm a rare one that got started in my teens. They say they go away with middle age so I'm trying to act older everyday. While I lived in Seatlle I saw Dr. Singer, a great Neuro who knows everything about clusters. We tried a lot of pharma-coctails over the years but settled on Prednisone for preventive and Imitrex shots for abotives. Frova now seems to do well but I'm using it off label (i.e. taking one before bed to prevent to nightime CH) and the insurance company has cut me off twice in the last two weeks. I can't really tell you anything that I haven't seen posted already other than to advise everyone to take the initiative and educate your doctor. Also, stockpile the meds during the quiet months so you have extra for the episodes. Good Luck, Ted
Ted Gorder <ted@gorder.com>
Gulf Breeze, FL USA
Wednesday, December 17, 2003 at 16:25:52 (EST)

Came across this website by accident today...although I don't believe in accidents. I wanted to share something with you'all. The company is called Reliv and the products have changed my life! I am now a distributor for these amazing products because of the life changing results I have had...and have been able to share with others. I suffered with Fibroid Tumors, Chronic Fatigue, blood sugar issues, very very low blood pressure (all of my life), heel spurs, digestion issues, acid reflux, just to name a few. (phew) Within 6 months on these products I had my life back and now 3 years laters I feel awesome. Better than when I was younger. I know many, many people who have been helped with headache issues. Migraines, cluster headaches, menopause issues as well as major disease such as Scleroderma (runs in my family), cancer, lupus, MS, Parkinson's etc. I have met them and spoken with them at conferences, phone calls, and a few I have helped personally with Reliv. It has been amazing! A simple miracle!! These products are in powder form that you put in liquid and drink 2x per day. It works because of the absorption rate (98.9%). Vitamin/mineral pills are 15%, if you're lucky. If you want to know more about it...I would love to share them with you. This is now my life's mission, besides family and my faith. Everyone have a blessed holiday.
Toni <lifemaderich@comcast.net>
Doylestown, PA USA
Wednesday, December 17, 2003 at 13:47:20 (EST)

Here we go again. Right before Xmas I get hit with a cycle. So F#$O#($ typical of this sickness. Sorry. I need to vent. I'm angry. Same thing happened last year. Right before Christmas. I expect this cycle to stay through the new year. I'm calling in sick today since i've been up all damn night. The wife is understanding, thank God. Shes asleep now and i'm just going into a quiet time. the worst is over for the night. Two hours of pain and suffering. I'm a lefty CH. So it happens on my left side. I go to 10 within minutes. It lasts for over an hour. I have inagram but i'm always to late for it to work to knock it out in time but it does help i will say for me. so when all the gang is having a sip of cheer over the holidays i'll be abstainting. alcohol and CHs don't mix for me. one sip and i'm screwed unless i want an hour or so of utter pain and torment. i'm 44 and when i get hit i think about offing myself to rid me of this s$%^. again, i'm angry for it. sorry again. anyway, i'm not going to work today because i'm tired. up all night pacing, hitting my head on the wall, cursing satan, etc. i'm vexed i'm sure. anyway, onward in life with CHs. it's just the way it is for me. Robbie
Robert
Dallas, TX USA
Wednesday, December 17, 2003 at 06:39:03 (EST)

Yikes!! It is that time again. Hello everyone. James Sykes here. How horrible it is to go to the emergency room and no-one understands.They want you to sit in the waiting room an hour or two. I understand I am not going to die. But try believing that when you are having an episode. I am working with my dr. to get oxygen. I have heard great things about it. I get my headaches every other year. They last 4-6 weeks 3-6 times daily 1-2 hours in duration. What else Helps? I usually sit in the garage where it is freezing and cry and yell so as not to wake up the rest of the house. Thanks for letting me cry on your shoulders everyone.God Bless you all. If only more healthcare proffessionals understood.
James Sykes <js426@hotmail.com>
raleigh, nc USA
Tuesday, December 16, 2003 at 13:28:39 (EST)

I have been suffering from these headaches for 23 years. I was sure it was a tumor, so I got an MRI. There is nothing wrong with my head. They occur every one to two years and always at the beginning of winter. I prefer to be alone during them so I get out of bed and go hide in a bathroom or closet. They start out relatively mild and get very intense toward the end of the 4th to 6th week and then their gone. they usually start at about 1 am and last about 1 hour. towards the end my right eye stays noticably swollen. Thank you for proving that I'm not a freak. I deal with them better now that I know my eye is not going to burst or go blind. Thanks to all of you for sharing. E-mail if you need to talk about it.
David Brown <hwcjservice@yahoo.com>
Jackson, Ms USA
Monday, December 15, 2003 at 21:59:50 (EST)

I attend the University of Wisconsin in MAdison. I'm 21. About two months ago I go a severe headache. I didn't know at the time but it was to be my first cluster headache. I took Bayer aspirin and it eventually went away but not without some pretty bad pain. My right eye felt like a golf ball on fire, my right nose ran, my right eye teared. I neve experienced anything like it in my lif. Well, after an hour of torment it subsided. I figured that was that. But, in the middle of the night it came back. It recuured the next day. And the next. And the next. Three to four attacks a day at around the same time each day and night. I went to the student clinic. The doctor there ssid not to worry that I was just stressed out. Anyway, after three weeks of daily headaches I didn't care what the doctor said, I "knew" I had brain cancer. I never had such intense pain. It was everything I could do to keep sane. I called my older sister who lives in another state and told her about this new experience I was having. She works in a hospital as a crisis counselor. She explained my dilemma to several doctors where she works and one of them suggested cluster headaches. I never heard of such a thing. I surfed the internet and low and behold, there are such a thing. I stumbled onto this website and began reading. Yep. No doubt about it. I was relieved to know I don't have cancer or a brain tumor, but I'm scared to death that I'm a Cluster head and will be from now on. I haven't had an attack in over a month but I can only wonder when I will have one again. I'm trying to remain calm about this but knowing that I'll go through intense pain again every day stretched over days and possibly months is scary. At least I know what it is and that I'm not alone. I don't feel that I have to explain it to anyone now or even feel guilty about being up in the middle of the night with a raging head ache. But, it is a drag. If it happens again, I'll go to a doctor with print outs of CH data from this website so he/she will also know what I have. Maybe that will help them prescribe something listed here. Thanks.
Michael
Madison, Wisconsin USA
Monday, December 15, 2003 at 12:25:57 (EST)

It's been almost a month to the day and as suddenly as the CH started last November, they're gone! I had two uninterupted nights of sleep without awakening at 1AM to tend to the beast! God only knows how long this remission will last. Previously, I went nearly 18 months without an attack. I really did the cold water drinking technique and that helped a lot. Also, getting on this website when I'm nearly at a Kip 10. It all helped get me through this period. I even hazzarded a glass of red wine with dinner last night and no impact! God, remission is pure bless. I know I'll get another attack down the road. It may last for a month or longer or less. Only God knows at this time. In any event, I thought I'd pass this along. God bless you all fellow sufferers. You've really been a lot of help during this cycle. All my best for the holidays. James
James <mijerbmac@hotmail.com>
Singapore, Singapore
Monday, December 15, 2003 at 07:56:28 (EST)

Greetings from the Wife of a cluster headache "victum". My Husband is in his mid fifties. He has suffered for years with CH. We have been married for almost three years. I was pretty shocked when he had his first headache after we were married, with all the banging his head on the wall kinda thing. The first thing I did was visit this web site and others to try and find some help. We tried some of the things that were mentioned to no avail. I am a former migraine victum. I tried one of my old migraine tricks in combination with just an idea I had and the silly thing works IF he starts immediately when he knows a CH is coming on. He drinks a 20 oz. bottled PEPSI and takes four Motrin. If he doesn't do that right away it doesn't help but when he takes immediate action his CH is short lived. We don't profess to be Doctors or even suggest that you try the same treatment we just want to let you know what we tried and what works for us. Another thing we do that works if it is night time and he didn't get to the Pepsi and Motrin on time is...I give him one Tylenol PM and then 2 - 3 hours later I gave him one more. That usually knocks him out for the night. I hope you all find help for your CH's. What a dreadful thing to live with. Hugs Cheni
Cheni <Chenichic@aol.com>
Lakeland, Fl USA
Sunday, December 14, 2003 at 22:56:28 (EST)

Im 26 and suffer from this crap cluster headache...Goodness its nice to know there is more ppl out there who understand what I go thru...Im on imitrex, and i dont have coverage,sucks eh. Its just over $100.00 for 2 pills for me...I hate the nasel spray I chuck up when i use it... thanks for the site.
Shery <Star>
Toronto, ON cANADA
Sunday, December 14, 2003 at 19:21:37 (EST)

I have posted two or three times, one time that I am particularly glad that I did. I am a cluster chronic female (age 67) who had migraines as an adolescent, so am able to differentiate. Must say, tho, every time I talk to somebody who claims to have clusters, they appear to actually be suffering from migraines (by my personal criteria, as I can only speak for myself). As a clusterhead, I do not suffer from nausea, left nostril usually stuffy during headache (3-5 per day, every day, for 20 years), eye droops sometimes but not always, ditto drips tears. Lying down makes headache worse and vigorous exercise might well get rid of the stinker if I could make myself raise my heart rate at 3:00 a.m. Cafergot has been mainstay over the years with only recent peripheral neuropathy in left foot. Heaart periodically checked out and seems to be holding up. I also use lidocaine, but cannot lean backward, as I have one fused cervical disk and one missing one either above or below it (can't remember), so do sometimes use the "squirt" method, but do better leaning on a wall with my head between legs looking backward. Not leaning on wall causes vertigo which can give rise, at my age, to "she's fallen and she can't get up." Then follow up with one of the small gel pads I've made from a larg
Susan Best <sbest53@earthlink.net>
WA USA
Saturday, December 13, 2003 at 10:45:07 (EST)

About 13 years ago I started suffering what was tentatively called by the neuro I saw "clusters"...after a year or two (?) the headaches basically stopped...most people attributed them to the stress of being in a failing marriage. I was in my mid 20's. Over the intervening years, I have had other bad headaches, but the only other sustained headaches I determined was due to a blood pressure med-I did some explicit testing and a change to another med stopped the headaches (as well as stopping taking that pill). Those headaches were not like the ones I remembered. Now they're back, happening more and more frequently for about the last 6 weeks, getting up to K9, a few 10's, lasting between 30 minutes to a few hours. I have seen the Doc (now have a referral to see a neuro here in FLA), have been given Zomig tabs and Cafergot (I had that years ago with little efectiveness, but I think it was a lower dosage), which have helped...but not always. I think after cruising this site for a couple of days, and following the links, that I have the Beast, though somewhat differntly. Such as I rarely get these things when sleeping (but that has happened), or my headach today. It wouldn't go away, I woke up with it as maybe a K2...it's vascillated between K2 and K3 all day...BUT IT HAS SWITCHED SIDES A FEW TIMES AND AT TIMES BEEN IN BOTH SIDES!!!! That is rare even for my experience. I can only hope that Monday and Tuesday this week (now it's Friday) was the peak of this cycle-I had a constant K4 (at least) headach for nearly two days, several times escalating to K9-10. IT SUCKED. But I'm sure I don't really need to say that to the visitors here. Anyway, I'm probably going to register on the message board very soon. Love and PFDAN to all.
Ed Ardzinski <edward.removethis.ardzinski@verizon.net>
Palm Harbor, FL USA
Friday, December 12, 2003 at 17:44:59 (EST)

Hi, I am 39 and have had clusters since the age of 14.It has been a long, frustrating problem. The only way I can function and keep a job is with Imitrex injections. My cycles seem to get longer the older I get. Lasting sometimes 4 months. 4 injections a night usually. I would welcome hearing from others.
Heather <heather_hilts@hotmail.com>
ottawa, canada
Friday, December 12, 2003 at 16:49:45 (EST)

Thank you for this site. Donny has been a CH member for about 23 yrs. We have been married for 9 yrs and every year they seem to get worse. They usually start in oct/nov and are gone before Christmas. This cycle started early oct and still going. Donny has one in the morning and then like most every one else 2 or three in the middle of the night. Dr's have told us that they will one day just go away. Will that day ever get here? The last cycle he was given oxygen @ 10 lpm this seems to lessen the length of the small ones. With our last trip to the Dr. he was given 300mg lithium and the oxygen. We had two good nights. Then they were back even worse. I took him to the E.R. after 2 CH 1hr each he was given Elavil, codine and oxygen. He sleep the entire next day. So when the next night came I gave him 600mg of lithium and 25mg elavil and codine this has worked for the last few days with no pressure behind the eye and no twinge. Does taking the meds just prolong the cycle? Or turn them chronic? Thank you for this site I now understand what he is going through. Lora wife of a sufferer.
DONNY CAGLE/LORA CAGLE <LCAGLE8820@HOTMAIL.COM>
GLEN ST MARY, FL USA
Friday, December 12, 2003 at 16:10:31 (EST)

Force Ten from Kipvoron. I styed up to 2AM out of fear of going to sleep and geing visited for another night by the beast. Weariness caught up with me and I gave in. An hour later I have a force 10 and I'm really hurting. I logged on to the site, drank my cold water and am now awaiting to see what will happen. If my luck holds, the pain will subside in short order. Fortunatey, I haven't been hit during the day during this cycle. The beast only comes out at night as if it were fearful of me! It won't attack when I'm conscieous. So typical of the little coward. I'm so sick of this ailment. I'm so sick of it. Someone a few posts ago mentioned laughing gas as a possible pain inhibitor. I wonder if it would work. If not, at least I'd be able to have a few laughs. I haven't had a nip of booze in over a month but abstaning hasn't been of any use to me. The best still comes at night to rob me of sleep and punish me besides. So sad I get an attack after a sip or wine or anything else containing alcohol. I'd love to be able to drink this bastard to rest. Well, so far so good. The pain is subsiding and it's only been since this post began. I think I'm onto something. I'll check in agaoin tomorrow morning when I'm up again with a Force Ten. I'll continue reporting on being active on this website during an attack and the easing of pain. I feel it coming to a rapid end like it has these past few nights. God bless all being here.
Kevin
Salt Lake City, UT USA
Friday, December 12, 2003 at 14:23:26 (EST)

So glad I found this site. The info is great and it's good to know that there are others like me out there. I have been a clusterhead for about 10 years now, I'm 34 They come and visit about every 6 months and hang around close to 2 months, 2 to 3 times a day. the longest I've been without them is about a year. That was great. As of now I'm right in the middle of a cycle, Close to 2 months now, keep on praying these things will end soon. My family dosen't know what to think and all of my neighbors and friends think I'm pissed at them or somthing. They just don't undrestand that I don't want to be out of my element when I have one of these damn things. One of my neighbors just got a new boat and has been trying to get me out on this thing for a while now, So I sucked it up one day and said ok. Were in the middle of the damn ocean on a nice hot day here in sunny Florida and the beast comes to visit. Talk about hell I was ready to jump overboard and make myself shark food right there. I guess I'm lucky though, At least I'm not having 8 a day like some of you guys. I average 2 to 3 a day anywhere from 5 to 10 on the kip scale. it all depends on how quick I can get a shot. And every cycle is different. For the most part they are always on my right side but this cycle they are on my left. Some cycles I can drink a case of beer if I wanted and get nothing but this cycle I drink one sip and the beast comes. Other cycles all I've got to do is pop my neck and he is there to visit. Tried quitting smoking but he still came , so screw it I started again. Have not tried stoping certian foods because I wouldn't know what to stop. I've just come to understand when a cycle starts deal with it the best I can, Hope I've got plenty of imitrex and pray they end soon.Again thanks for a place to vent and people understand. Mickey Sheehan in Tampa FL
Mickey Sheehan <mickeysheehan@verizon.net>
Tampa, FL USA
Thursday, December 11, 2003 at 19:42:35 (EST)

I wonder if helium and/or nitrosoxide (laughing gas) would work on these devils. Anyone know?
Wondering <Nodda>
USA
Thursday, December 11, 2003 at 17:22:16 (EST)

Have not had the devil in about 8 years or more. Thought I was done with it. Started again about 3 days ago. Did not know anyone else with clusters back then. thanks for this site. It especially helps friends and family understand a little of what we go through.
Greg Breazeale <gregory.breazeale@gpisd.org>
Dallas, Tx USA
Thursday, December 11, 2003 at 15:32:05 (EST)

Just started a new cluster last week. Whee! 18 months ago, during my last cluster, I was involved in a clinical trial for a new treatment that essentially involves spraying a pepper spray derivative in your nostrils, which proved to be extremely painful (in a different, more tolerable way) but pretty effective. My attacks were less frequent, less painful and the cluster only lasted a month. Unfortunately, since it is still in its testing phase, I can't get it for this cluster, so it's back it Imitrex and oxygen. Anyone have any luck with accupuncture? I don't know if you all know this, but I find that the oxygen is only effective for me when my head is between my knees. Steroids, ergotomine and verapamil were not effective for me. Sure do miss a glass of wine with dinner.
Marty <martyyu@aol.com>
Los Angeles, CA USA
Thursday, December 11, 2003 at 15:24:44 (EST)

Greetings from Clusterville. Up again for the 18th night in a row with my "friend" in tow. He comes three times a night without failure. You would think that he'd give me some respite and stay away for a spell, but no. He's the jealous sort who must be with me when I'm in a cycle. My cycle lasts for a month then I get up to two months off and then I'm back in one again. Not cool. I've given up on medicines. They work fine during the day, but it's nighttime that I need them the most and they let me down every time. Now for the good news. For some reason that I've yet to figure out, when I am awakened by an attack, I drink a very cold tumbler of water and take a couple of Tylenol PM. I immediately get to this website and the guest book and begin to read the postings. I begin to read and read the postings and within five minutes the attack subsides! I've been doing this the last four nights and its works for me. Again, I don't know why. I'm able to get control of the pain within 15 minutes of being awakeened by doing this. All I can say is that I hope this "remedy" continues for me. I don't want to jinx it by talking about it but I also wanted to share it with you all in the event it might work for some of you. I don't know. Anyway, by the time I started this posting until now, the pain has subsided to a level that's manageable. See you all tomorrow night.
Kevin <kwl1950@earthlink.com>
Salt Lake City, UT USA
Thursday, December 11, 2003 at 13:16:44 (EST)

I've had episodic cluster headaches for over 20 years and I'm getting to the end of the rope. They go away then start up again. I played hockey throughtout my life and have been injured but nothing compares to the pain I have at night. My right eye feels like someone has a hot knife in it. I've tried every med on the market, ( and some not) but nothing works for me. I don't smoke, take drugs or drink. Currently I'm getting two visits per night. I dreed the night when I have to sleep because I know I'll get a visit from my friend. I have ringing in my ears and my head is sore all day long. I hope these will go.
David <guitar_02802@yahoo.com>
Yardley, PA USA
Thursday, December 11, 2003 at 11:19:14 (EST)

Just thought i would add my two cents worth.I was the victim of chronic cluster headaches for fifteen years.I had a headache every night at 8:30 p.m.For thirteen years I daily took the maximum dosage of verapmil and cafergot. This pretty well kept them in control. Three years Four years ago my doctor changed from cafergot to depakote. I continued on the verapamil and depakote until february of this year with great results! no headaches. Any way i started cutting back on the daily dosage in february and in may discontinued all medication. I have had no headaches nor any indications of a headache.It is hard to beleive that after all of those years that the headaches stopped! In the past my headaches were so painful i some times would pass out. Just thought i would pass this along, who knows they may come back againg but in the mean time after all of those years i feel i have my life back. jim draper
JIM DRAPER <JDRAPER32@CS.COM>
WINTER HAVEN, FL USA
Wednesday, December 10, 2003 at 14:49:45 (EST)

I arrived home via O'Hare airport in Chicago after what I would call the plane ride from hell. After we lifted off from LA, I had a white wine and I was suddenly struck with the worst headache of my life. It felt like pulling my right eye out. Without any pain reliever, I suffered through it and in an hour it was gone. Completely. Later at home, I opened a beer and boom! It started again. This continued into the night. I didn't know what was going on. The next day was the worse. 4 major headaches all lasting about an hour. Awakened at midnight with the worst of the lot. After several days of this, I mentioned the dilemma to a friend and he said I was f%$#$*. He then told me about CH. He gave me with site since he's an old hand with CH. Now I know what's going on. I'm 34 and the fun is just beginning it looks like. Week seven and no relief yet. I started a log to keep track of this. With any luck I'll be in remission for a spell. In the meantime, I'm holding off seeing a doctor or getting on medication aside from tylenol. Tylenol PM helps a little at night. One thing is clear to me now. CH are a real pain. I go from 0 to 10 on the kip scale in 5 minutes. The 10 to 0 in five minutes. What a drag this is. Fortunately, I was directed to this site by my friend and I'm learning all I can about this dreadful problem. Regards, John
John <Vickors>
Micigan City, IN USA
Wednesday, December 10, 2003 at 12:26:00 (EST)

Hello I have had this thing since 1979 and have had everything done to try and help me. After reading all these messages it's seems everyone else has had the same thing done to them. I'am going thru a cycle now so thats the reason I'am writing.I guess the real reason I wanted to write something was because of the last cycle I had.It was two years ago and was going on for about 4 months. To make a long story short I was fed up and wanted it to stop.I went to my doctor, went on Disability for 6 weeks and started taking Oxicontin. OK You can all stop calling me names now!! I was just tired of it and wanted something to help!!!Well it did help and one 20mg tablet a day kapt me at work,I could well and thank god I got some SLEEP with no interuption. I was not high I could funtion normally with no side effects. Well except addiction of course!! So I had to come off the Oxicontin with methodone for a year before the effects went away. AND now here I'am again going thru the same old S--t. OH Well BYE
Randal Benton <clusterhed@aol.com>
Kansas City, MO USA
Wednesday, December 10, 2003 at 02:19:41 (EST)

thanks for this website. It has helped alot to know there's somewhere for info on Cluster headaches. I've been a victim for nearly 35 years and i'm not 51. i'm not chronic but i do get them every six months. sometimes the cycle last a week, sometimes a month or more. like many, nothing seems to work very well for me. i particularly hate the night time when i lie down to sleep. seems like as soon as i get to sleep the headache comes. i load up on tylenol (six tablets) before I go to bed but they don't help much. when i awake i chew four of them to get them in my sysem as quick as possible. that keeps the pain under somewhat control. in about an hour the pain goes away and i can get back to sleep. my wife understands but is helpless. i insist she stay in bed and sleep as she can't help. i'm just grateful she doesn't suffer like i do. keep theis site alive. thanks.
Tom Harris <thar1954@earthlink.com>
Seattle, WA USA
Tuesday, December 09, 2003 at 12:33:31 (EST)

I'm into my fourth week of a CH cycle. I had a day here and there where the beast didn't visit, but only for a day. The pattern of attack is so damn predictable for this sufferer. I stayed awake until midnight thinking that fatique would get me through the night without the beast arriving. Nonetheless, in an hour after falling asleep I got attacked. Now I'm up and on this site hoping the diversion will ease the pain until I reach the magic hour when the beast is put back in the cage. On the bright side, during this cycle I found this website and have turned to it during my most desparate hours of torment. Keeping myself focused on the pain others suffer keeps me on track during attacks. Again, a diversion. Thanks to those who have offered advice and support. I look forward to a period of remission when the beast is asleep. Only then will I be able to get some sleep. James
James <mijerbmac@hotmail.com>
Singapore, Singapore
Monday, December 08, 2003 at 11:55:25 (EST)

This is a very helpful website. I suffer with Migraine Headaches.
Liz <annon701@aol.com>
Los Angeles, CA USA
Sunday, December 07, 2003 at 22:08:19 (EST)

hi-i have had headaches since i was 7 yrs old. i had my first migrane when i was 11. my longest headache lasted 18 weeks. i had it from the time i woke up in the morning until i would fall asleep at night, and sometimes it would wake me up in the middle of the night. the headache recently came back. i am desperate to find a way to get rid of it. my doctor tells me that i do in fact have headaches and thats all the help he offers. all i want is for this headache to leave me alone. if anyone feels that they might have a remedy, pleas email it to me, danny_glad@yahoo.com , i would appreciate it. i have already tried immitrex and zomig and they work about as well as water. so right now i pretty much just take 1000mg of ibuprofen to relieve the pain. if anyone could help i would love that. thanks-danny
daniel <danny_glad@yahoo.com>
phelan, ca USA
Saturday, December 06, 2003 at 15:25:39 (EST)

At the ripe old age of 55, and after having suffered from CH since my early teens, the speed at which an attack can come on is still terrifying. At least now, if I can swallow an Imigran tablet in time, it sort of caps the pain and pushes it into the "bearable" zone. If not, I know I am in for a couple of hours of hell on earth. Red hot poker pains behind my eye, sensation and smell of burning, disfigured face and weeping eyes. Many years ago,I just had to ride the pain out - no doctor seemed able to understand what was going on in my head. Having lived all over the world, different climates, different diet etc, I am not convinced that anything has undue influence in triggering the pain. I tend to liken it to wires in an electric plug suddenly, for some reason, touching, and producing this "exquisite" pain. All I can do is lay low, and wait for the "wires" to settle back into their rightful positions. The good news is that CHs are not life-threatening, and in my case, they do subside - slowly, reluctantly, but they do. And in a strange way, that makes me appreciate the "normal" days so much more. When you are in the throes of an attack, it gets absolutely desperate - but that blessed relief when the pain gradually subsides. I just wish I could find something to get my energy level back after a month of so of CHs - it seems to take me longer and longer to get back to feeling normal. Good luck to everyone. Thoresby
Thoresby
England
Saturday, December 06, 2003 at 11:27:19 (EST)

i have suffered from both migrain and ch for more than 43 years i can still remember my frist one at 3 years of age and how scared and confused. i would wait for the next one hopeing it would not happen at the wrong time like there is a right time.sometimes you just have to contiue with your life and don't have time for the pain and sometimes you can't take any more pain it overwheles you to the point of intanity and then there is nothing but the pain and you exist souly for it to servive. thank you valerie
valerie roberts
brooklyn, NY USA
Thursday, December 04, 2003 at 22:59:22 (EST)

I've been a member of the CH club for nearly 20 years. I can't say that I tried all the remedies I see mentioned here, but I've gave some of them a try. They didn't work for me. My CH come mostly at night when I'm sleeping. I'm up in a shot and take whatever I have around the house. Aspirin, nuprim, etc. It's a waste of time, I kmow, but it does help me mentally. I mean, I have to do something. One thing I did discover a few years ago. I turned off the aircon in the bedroom when I was in a cycle and I slept all through the night! Not a ripple of pain. It doesn't work ALL the time, but it works most the time for me. I've settled for that. When I do get an attack during the day, I take a walk away from people and just get past the pain. It's all I can do. I did read that CHs subside as one gets older. I don't really look forward to getting older but when I'm in a cycle I sure do! Happy holidays all and all my hopes that they're CH free.
Joseph
Miami Beach, FLA USA
Thursday, December 04, 2003 at 08:36:08 (EST)

I've been up all night fighting the beast with no success. So, I spent the night reading postings both present and past. What amazes me most is that the medical profession doesn't know jack shit about CH. How can that be? With so many of us suffering, the medical quacks dismiss our malady as some sort of nonsense. Are me faking about this? I'd like to hear from a medical doctor who suffers from CHs. They all can't be immuned to them, can they? Perhaps if a doctor who suffers posts on this site we all could find some comfort in knowing that at least one doctor knows what the hell we're dealing with here. Just my thoughts as I enjoy a brief moment of sanity in an otherwise desperate night of pain. Jim
Jim <mijerbmac@hotmail.com>
Singapore, singapore
Wednesday, December 03, 2003 at 18:16:32 (EST)

I am now suffering from clusters.They started last week and this is the 4th time I have had them. I have had them once every 3 years. That is my cycle. I am enjoying reading your web pase. Thanks for it
Vicki Carter <Vicotriafb@yahoo.com>
Winston-Salem, NC USA
Wednesday, December 03, 2003 at 16:19:36 (EST)

I recently had my 24th birthday and have been diagnosed with CH. My chronic headaches have been going on for about 3-4 years and I had no idea what was causing this excruciating pain that would last for weeks and words could not explain. It seems everyone that I told would look at me funny and think I was making it up. I was taking all types of painkillers, but realised it was effecting my work and personal life. I have been subscribed an Arthritis painkiller drug called Celebrex, I am not quite sure of the benefits but I am willing to give anything a go. I am on a 2 weeks trial of the drug and will give you all an update in a few weeks. I have also found that during my headaches, having a very hot shower helps reduce the pain to the extent that it is tolerable. I also find that when I partake in any form of sexual activity, increase in my hormones numbs the pain just like any strong painkiller will do, but naturally. If there are any other home remedies or treatments available, please email me at the address below. Thanks Paul
Paul <Malibu640@hotmail.com>
Sydney , NSW Australia
Wednesday, December 03, 2003 at 05:07:52 (EST)

I'm into another cluster cycle full bore. It started three weeks ago as a mild case of suddle pain twice daily to excruiating pain four to five times daily. I get hit in the afternoon and then again at around 11 o'clock and get hit, hit and hit again through the night. No more than an hour sleep here and there when the pain subsides and up pacing the floor again for an hour or so. My frequency of attacks have dropped off to about every six months. The lenght of attacks can go for a week or a month or longer. A daily grind until the cycle is broken. Living with this affliction is certainly no fun. Nothing I've tried works to relieve the pain during attacks. Nothing. I just pace the floor, watch to clock and count the time hoping that in 30 minutes to an hour the pain will disappear as rapidly as it arrived. Then I can be relieved for a spell. Those who do not suffer from this ailment can not possible sense the level of pain involved. I go from a 0 on the Kip scale straight to a 10 in less than five minutes. After that, it's pace, sit, pace, sit, pace, sit. Like I said, nothing works for this sufferer.
Turk <turk111@yahoo.com>
Chicago, Ill USA
Tuesday, December 02, 2003 at 22:22:12 (EST)

I should be happy. I haven't had an attack for over a year. But, I'm paying for it now. I'm into my fourth week of attacks. Twice daily. First one at 5PM and the second at 1230AM. The midnight attack lasts all night in most cases. I've had some success with a local over the counter medication called Panadol. I begin taking two tablets around 430PM to get past the first daily attack with little discomfort. I take tree before going to bed, but these don't do as well. When the attacks began after I turned 40, I didn't know what was happening. I then began my own research and found out about cluster headaches. I'm a victim. Mine are very typical. Right eye, running nose, drooping right eye, extreme pain for 30 - 60 minutes. No relief. I just guts it out. But, I must say, the paid sometimes is so extreme that I simply want to jump out the window. Fortunately, I'm not alone in this. I take comfort in knowing I'm not alone. I sure wish I wasn't a member of the "club", but knowing that others suffer let's me know that I won't die from this malady. I must get through each period and move on in life. I thank all those here who share. It doesn't make the pain go away, but I feel part of a family with a common bond. We'll get through this period together. James
Jim <mijerbmac@hotmail.com>
Singapore, singapore
Tuesday, December 02, 2003 at 17:26:22 (EST)

Hi everyone, wow, thought i was all alone but turns out im outnumbered! i was experiencing very bad migraines with a mix of nausea and dizzyness so i thought i should get checked out. the doctor sent me in for a scan as they thought it could possibly be a tumor, after months of worry waiting for the results i received them yesterday and am glad to say that no abnormalities exist. not a religious person but thank you god! i have to go back to the doctor next week for a review as they think i may be experiencing cluster headaches. i had no idea what they were until i visisted this site, i just wanted to say thanks,this site has given me alot of info and provided me with support. Thank you all!
nynja kitty <tattooed_ninja_kitty@hotmail.com>
belfast, united kingdom
Tuesday, December 02, 2003 at 05:49:22 (EST)

and I have headaches every day of my life. Iam 73 years old and I would like to know the name of the headache book listed on this mornings program of news.
Maryann Brown <LMBROWN2@hotmail.com>
Lebanon, OR USA
Monday, December 01, 2003 at 12:02:18 (EST)

I am in the midst of a bout now, having attacks every other night with some exceptions. Just got imetrex injectable today, probably have to use it tonight, hence, not wanting to go to bed. One thing that helps me that I havent heard yet is ice, when I wake up in the middle of the night, I take my meds and get a ziploc of crushed ice on the side of my head that hurts. It helps on the 4-8's (Kip scale), but I do find it doesn't help so much on the 9 or 10's. Any one else have success with ice? Also, vicoden helps when it is bad. Peacefull sleep to all. Bob in the 'Natti
Bob <rhodge_4390@fuse.net>
Cincinnati, Oh USA
Monday, December 01, 2003 at 00:53:54 (EST)

I have been a chronic sufferer since I was in my early 20's (now 38)While it has mellowed over the years (up to 10 a day all 10 on the kip scale, I am down to 1-3 a month 5-10 on the kip scale)all located behind right eye. Something interesting happened the other night. About 1hr after going to bed I woke up with a ch(about a 5 kip)and went to the fridge to get a drink. I grabbed a 1.25ltre plastic bottle of golden circle creaming soda (australia) which was half empty and half flat. I opened the bottle and drunk without taking breath till just before the moment of brain freeze I stopped. And blow me over the ch had disappeared completely. I thought it might be just co-incedance but a couple of weeks later, I again woke up with a ch (9 on kip), so I again went to the fridge in my zombie state and did the same but I didn't have enough in the bottle but what I did drink knocked it down to 2(kip) for about 10 sec. So here I sit with a bottle in the fridge waiting for my next one. It will be interesting if anyone else tries this and see what results they get. While I'm not to hopeful for a 10kip atleast the lesser ones I might be able to put a dent in. I got off the drug trail because its just a merrygoround and use imaging with the pillow over my head ie imagineing a simple shape spining or something like that, you have to be very focused which is hard depending on the kip, but I would always fall asleep after a few minutes. Anyway thought I'd add my 2 cents TTFN
R.Richards <yendor2@kooee.com.au>
nsw aus
Sunday, November 30, 2003 at 08:16:31 (EST)

Hi to all fellow CH sufferers. I wanted to share my experiences with you. I too suffer from CH's. It started when I was 19, I am 34 now, and I had no idea what this excrutiating pain was. I thought I wanted to die. I would threaten to jump off a building ect. They only came during the summer, very rarely in the winter. I lived with them, and no one could could figure it out, where they came from, ect. But I know now I had all the classic symptoms of CH's. Any types of smells, clothing, cleaning solutions, would rip my head apart. I looked for all fragrance free products which are very hard to find! The pain was so bad, I thought that breathing was causing the pain. Of course none of my family or friends understood. Even when they saw me lying on the floor, banging my head against the hardwood, they would just "tsk tsk" and walk away. In a way, I'm kind of glad they don't know this pain, yet it would be nice to know that they sympathized with me. I went to an ENT who told me I had sinus infections, so I took prednisone, which hepled, but the pain came back. (I know realize I was in a new cluster). The doctor operated twice on my nose, to no avail. (Although I did get a new nose out of it). I had been to nuerologits over the years, most of them just pacified me and gave me fiorinal. Finally I went to a new neurologist. I explained my symptoms to him, and he diagnosed me right away with having clusters. He prescribed lithium and verapamil for preventative and Imitrex to take as needed. It worked!! I went actually pain free for a year. All the sudden this summer (I don't know if it is a coincidence or not), when my air conditioner broke, my clusters came back. I never did well in the heat and humidity, but this was murder! They came back full force and I couldn't even stay cool to help with the comfortableness. So right now I am in the middle of a cycle. Usually they last about 2 months. So my question is, Can one develop and tolerance to the medicines I just described? I would love to chat with others who have clusters. Please feel free to email free. I would love to trade "war" stories!! Thanks for listening. ------ Scott >:-) Scott Frank
Scott Frank <Scottf651@aol.com>
Philadelphia, Pa USA
Sunday, November 30, 2003 at 03:23:09 (EST)

hello my name is martin i am 40 years old,and i have been suffering with severe ch since the age of 12.at the moment i am very close to having a new batch,i average about 15-25 a day and never less 30 minutes each,each time they come it feels like i am that bit closer to insanity,and the only thing that keeps me going over the edge is my wonderful understanding,loving partner beverley.to be alone through my bouts is very scary,the whole left hand side of my face swells and drops,i loose all feeling down my left side,when on the floor my partner tells me it looks like i am fitting i dont think i need to mention the pain,you know what that is like.i would also like to thank everyone for the letters on this site.i was one of those who thought there was nobody out there.bye for now!!!!!!!!!!!!!!!
martin civill <martin.civill@btinternet.com>
canterbury, england
Saturday, November 29, 2003 at 22:16:09 (EST)

Hi. Been a chronic CH since 1984. My neurologist says maybe they will go away in my late 50s. 7-8 years to go. Started out on sansert which was the best but side effects. Now on Lithium, Cafergot, and Verapamil. Works 99% of the time, but at least the quatlity of life improved greatly. Used to take 8 500mg of Extra strength Tylenol every few hours. once in awhile, if the LCV fails, 2 aleve works in about 10 minutes. I'm probably one of the few people I know that wants to get old. My CH started at my left temple. Just a general discomfort. Work it's way to a spot behind my left ear. Intensify and work it way back to my left temple. By then, it felt like someone was squeezing my left eye ball. I tried all different meds trying 'doctor' myself. A year passed by the time I went to a doc. Another thing that seems to trigger my CHs is caffeine. I stay away from caffeine now except for chocolate once in awhile. But no coffee, or regular sodas. Meds and diet restriction don't seem to help in themselves, but the combination does. Good Luck, Jay
Jay D Payne <jay.payne@comcast.net>
Aurora, CO USA
Saturday, November 29, 2003 at 17:53:21 (EST)

I wish I could try melatonin, but it's unavailable in Australia. Any helpful suggestions?
Lynette Whittall
Australia
Saturday, November 29, 2003 at 05:06:34 (EST)

I am just this side of swallowing another 60 mg of morphine to try to calm my head down, because the duragesic just isn't cutting it anymore. I suffered a severe head injury as a small child resulting in cerebral damage and scar tissue that loves to raise its ugly head at the absolute worst times! I have tried every drug, preventitive, abortive, and now I am on a fentanyl patch.
India <Graciesmom@prodigy.net>
fellesmere, fl USA
Friday, November 28, 2003 at 15:19:48 (EST)

Imigran tabs are my only relief as backup after O2 now...gone thru a D size cylinder of O2 in 5 days...brilliant, but not big enough...phuckenhell...give me an endless supply of oxygen 100% and Imigran and I'll have nirvanah...*deep breath on O2*
Shadow <shadowkaster@hotmail.com>
Perth, Western Australia OZ
Wednesday, November 26, 2003 at 10:50:59 (EST)

I have suffered with Headaches for 27 years now and there is no cure only treatment in controling them. I have tried everything available Worldwide and the only thing that is effective is Injections of 30mg Morphine Sulfate a number of times per day Doctors in Australia Love Human Guinea Pigs as they all wish to try medications that have been tried and failed many times but refuse to accept it and thus refuse to increase the No. of injections which makes it hard for the sufferer and it is not the Health Department as they are in favor of injections if all else fails it is just the Doctor. All thatb the Doctors in Australia are interested in is how much more MONEY can we rip out of these desperate idiots which I consider an utter disgrace. Graham
Graham Roberts <mahal@dodo.com.au>
Llandilo, NSW australia
Tuesday, November 25, 2003 at 22:23:01 (EST)

Iím 44 and have suffered with clusters since I was 13. Diagnosed at the age of 18 and survived countless events since then. I looked for this because I feel another cluster session coming on. How do I know? How do you know? Although this is refreshing and it is good to know that there are people that suffer from the same affliction, we are all still left with the horror of the clusters. HORROR is an understatement. What I mean is that we still must endure what is unendurable totally on our own. I guess I should count myself as lucky. I suffered chronically through my 20s and into my thirties but they have tapered off quite a bit over the past decade. I only suffer an episode about every three years or so now. Why? Who knows, thatís why I am lucky. It is a pain that cannot be adequately described. It is a pain that in some ways defines our lives. It makes us live when we are free of it, and takes us to brink of desperation at the worst of it. It is a pain that only we can understand, accept and ultimately deal with. Is there a magic bullet? I have been searching for one neigh on 31 years now and havenít found it yet. What helps me? I eat allot of rye. Rye breads and drink rye beer and whisky. Not too much of the latter mind you because my wife wouldnít stand for it. I also find cinnamon helps. I try to eat cinnamon candy, gum, tooth picks or anything that has cinnamon in it. I also will not allow doctors to inject any analgesics that contain epinephrine into my body. That is why I have had 2 root canals done without analgesics and one with just a short acting numbing agent. How, some might say? If I can endure a 10 (Kip scale), I should be able to cut my own arm off and not so much as flinch. Thatís howÖ Prednisone has worked for my last two clusters with Imitrex as backup. And what helps me the most if the cluster isnít abated is diversions. Diversions such as showering with hot, hot water on the side of my head that hurts. It helps divert or split the pain between two types of pain. It beats whacking myself in the head. LOL. Look at the medical info section and take heart that they will slow as you get older. And know that you are not alone. Your pain is not unique. It is real, it is horrific, but it wonít kill you. Remember; eat cinnamon and rye along with vitamins. Have a Dr. juice you up with prednisone at the onset and carry Imitrex for when it gets bad. Use hot water on the head in a dark shower when all else fails. And donít forget to focus on your breathing and your pulse. Good luck and good endurance.
Richard Netzer <rmnetzer@aol.com>
Rio Rancho, NM USA
Tuesday, November 25, 2003 at 17:56:28 (EST)

I didn't know there was a site like this. I took a chance on Google because of a bout I am haveing now. I feel for all those of you out there that suffer from cluster headaches like I do.
Blanche Hardy <blanchemh@adelphia.net>
Londonderry, NH USA
Tuesday, November 25, 2003 at 09:23:14 (EST)

I am glad i am not the only one anymore
michael parker <michael.parker@ima.co.uk>
leeds, england
Tuesday, November 25, 2003 at 06:35:45 (EST)

hi all ,i`ve been a suffer for nearly ten years now and what seems to work for me is ice packs on different areas of the head and neck , my doc has me on 600mg of lithium and perocet for pain works ok but i only get them once everyday for 8 or9weeks then the leave to come back in 10 or 11 months i guess i`m lucky my prayers are with everyone of you i know the feeling
glen jenkins <renajenk@nbnet.nb.ca>
miramichi, nb canada
Tuesday, November 25, 2003 at 00:46:34 (EST)

Hi, Thank you so much, all of you, I dated a wonderful spirit who suffers this devil so much he cannot work and will never commit to a long term relationship. I myself sufferd from Migraines, rebound, and tension headaches for too many years; Acupuncture 3 x week for 6 months and 1 x week for another year has finally gotten rid of my demon; now I'm writing a report for school Pathology class (studing to be an Oriental Medicine Practioner) and decided to do the topic of headaches with emphasis on Migraines and Clusters. Thank you all for sharing and teaching us the hell you and your loved ones experience here on earth. I hope you find the Keys to unlocking your own path to wellness like I did; and have the Support of so many in financial as well as encouragement for when it seems like nothing is getting better. Love and Light Bonnie.
Bonnie K <unity.spirit@verizon.net>
Sarasota, FL USA
Monday, November 24, 2003 at 17:50:14 (EST)

Hi, Just entered the circle again, and wanted not to be that alone, so I decided to add my story atlast. I am living in the Netherlands, male clusterhead, 49 years old, married to a beautiful wife and we have a daughter of nine years of age. They are the reason why I am still alive. This year celebrating my 25th anniversary with CH. Started as a regular episodic sufferer with a couple of clusters a year. Iīam a diagnosed CH and joined subject to the Dutch medical CH research/workgroup, if not for myself then at least for the next generations. Now since 7 years (or so, canīt remember exactly) a chronic sufferer with uncountable (stopped the counting years a go) clusters each year. Allways hunted by the shadow or the shadow of the beast, 24 hours 7 days a week, never free not even for a couple of hours. Tried all the methods including Oxygen, Imitrex/Sumatriptan, Verapamil and much more, walked around like a zomby, or if you prefer more like an Altzheimer patient for years until it burned me out and I even went that far that I tried some serious suicidal attempts. Then took the hughe step to clean myself from all the poisson and chemicals, took over two years to get back a little and started trying to find new ways. Tried alternative things like Acupuncture, Homeopathy, Giropr. and more extreme things like LSD and Mariuhana and shamanic meditation techniques. Still on the meditation techn. and Mariuhana because it gives a little bit of a relieve, not much but it does some good after the attack an more important overhere it is easy to get. Sleep is very bad, I only sleep about 3 to 4 hours a night (and that I would call a good night of sleep, mostly it is just 1 or 2 hours) and then wake up awaiting my "dance partner". Iīve been visiting the site on and off on a sort of irregular basis. Just had a major attack and wanted to feel not that "alone" again, nobody not even my family can understand the isolation it is bringing. Feel like being run over by a truck or blasted by the engines of a Boeing 747, whatever, just a bag of bones. Iīve recently stopped trying to explain to people what CH is and what it does to you as a person. Now a days I point people, who are in "compassion" with me, towards the internet, it is easier and it putīs the responsibillity back to them, if they are really compassionate they go for the big Quest and come back and tell me what theyīve found. Sites like this and OUCH and the Dutch site of the medical CH research/workgroup are better then the explanations and stories I can tell them. Because even if people are really interested they still experience "me" and therefore see it all through my eyes and unwillingly judge that as inobjective, not to say subjective, which on its way generates the most silly advices and that again gives me the feeling of being not taken serious. You donīt want to know what kind of advices I have gotten over the past 25 years. Oh life let me live yours, Tom
Tom Cramer <t.cramer@xs4all.nl>
amersfoort, nl The Netherlands
Monday, November 24, 2003 at 15:52:06 (EST)

Hello, since last Thursday (11/20/03) I have been suffering from a headache or a migraine. I do not know. However I was afraid of my symptoms so I went to the emergency room to check out what is bothering me. They didn't run any type of tests on me or anything but they perscribed me to fiorinal. I'm still feeling the headache in the left temple of my head. What I would like to know, is there a possibility that a headache can last this long? Can someone please respond to me in email (tjchapman81@hotmail.com). Thanks
Tiffany <tjchapman81@hotmail.com>
Newport News, VA USA
Monday, November 24, 2003 at 11:59:49 (EST)

IMITREX VIALS??? Finishing a 6 month visit from the "DEVIL". Two per night and one per day all 9s or 10s. Every day, you people know the drill. Been taking all the drugs but Imitrex is still the majic bullet. My Insurance has recently denied coverage for injectables. I know IT DOES come in vial form. Has anyone out there been using this method? Price? Availibility? Also, does anyone know if we are any closer to a generic? Hang in there evryone!
Glenn Huston <glennhuston@yahoo.com>
san diego, ca USA
Monday, November 24, 2003 at 01:39:54 (EST)

This is a PS to my former post.... For those in Australia who want to give Oxygen therapy a go and are having problems with a GP giving them a script as I did last week, here's the solution...get in contact with Oxycare in Sydney...freecall phone number is 1800 050 999 and ask for Rachel...she's an awesome lady! Explain to her that your GP won't prescribe Oxygen and all you need to do is fax her an Indemnity Letter, outlining your need for the Oxygen and that you understand that you take full responsibility for the administration of it....she'll organise a tank, respirator and other bits and peices for you to pick up very locally to you. Only problem is that you'll have to find a supplier for the non-rebreathing mask in your area....as I've only had mine for 2 days and have only had the normal mask (picking up my non-rebreathing mask next week) I'm not giving up....it can work....goodluck...and peace all...>8)
Shadow <shadowkaster@hotmail.com>
Perth, Western Australia Australia
Saturday, November 22, 2003 at 09:08:55 (EST)

Well peoples....had an attack of the beast last night and the new Oxygen tank I picked up the day before worked...unfortunately, an hour later I had another and after 12 litres/minute for 25 minutes I started scoffing down the Ergodryl (Ergotomine/caffeine), like they were lollies...supposed to have no more than 10mg per week....I had 12 last night, with no relief for the first time out of 25 years of sufference...I'm a bloody zombie today....the cluster lasted for 4 hours of a kip scale of 10+ until I finally fell asleep for about 2 hours...then awaking about 3 times during the night and morning with it still there in the side of my skull...around a 6 or 7 on the kip scale...what the F!@# is going on in my head!?!?! I had 2 glasses of white wine last night....must of been the trigger...never again....not in this cycle....I've been walking around my house all day like dog-gone zombie...I now have a script for Imigran tablets (50mg)....the equivalent to Imitrex in the United States....but for christs sake....AU$35 for 4...at the rate I'm suffering now and they're getting worse...I'll be chewing thru AU$100 worth of meds to feel slightly normal...I've never been soooooo zapped of energy in my life...I don't know if it's the OD on the Ergodryl or the magnitude of the cluster headache that I had that's making me feel so bloody aweful...it's 35 C temperature here at the moment and I missed out on going the beach today....I do not want this crippling bloody disease to affect me like this....hospital is going to be my next port of call if the Oxygen and the Imigran don't work...*shakes head*
Shadow <shadowkaster@hotmail.com>
Perth, Western Australia Australia
Saturday, November 22, 2003 at 08:57:32 (EST)

Hello. My name is Bob and I am a clusterhead. This sure is a great site. Of course I'm in my CH cycle and that's why I found it. 24th year. I've tried everything out there over all that time. The only thing that works is IMITREX injections. This cycle is the longest one so far. 10 weeks 2 days now. I have been checking out all the postings over the last few days. Sure has helped !! I don't remember when the last time I laughed so much. Not at any of you, but with you. Every little thing someone writes about their situation is sooooo true. I just think: (Been There Done That). Looking forward to talking to some of you down the road. Definetely would like to check out one of those Clusterhead conventions. I have a great wife (Cindy) who has stayed at my side over all these 24 years of HELL. Haven't slept in days. As soon as I fall asleep, the monster returns so I just stay up. Soooo Tired. Can't wait till this bull ends and the demon leaves. Nothing more to say for now except HELLO to all and may peace be with you.
Bob Loeffler <fyrbyrd1967@aol.com>
Gurnee, IL USA
Saturday, November 22, 2003 at 03:03:28 (EST)

7 weeks and still going. never lasted this long
bill hirn <hirn1@netzero.com>
cary, il USA
Saturday, November 22, 2003 at 01:56:19 (EST)

I'd actually been pain free for about 20 years up until about 2 weeks ago! The hideous monster is back. My husband, children and co-workers don't know me in this way. I hope they will understand. Presently I am at Kip scale 2-3, having experienced 3 attacks today. I dread the hours ahead... Yasmin
Yasmin Godsmark <yazbeaux@bww.com>
Pilesgrove, NJ USA
Friday, November 21, 2003 at 23:46:57 (EST)

Well, its that time of year again, unfortunately. Does anyone have any info on whether or not quitting smoking puts a stop to this hell? It seems to me that the majority of ch sufferers smoke...am I correct? I avoid alcohol at this time of year but the extreme stress of ch makes it near impossible to quit smoking! Would it do any good, anyway??-
Lynette <cascade44@hotmail.com>
Australia
Friday, November 21, 2003 at 23:09:19 (EST)

First time,great to be on board.Dan.........
Dan <d_cullihall@hotmail.com>
Corner Brook, NL Canada
Friday, November 21, 2003 at 07:25:38 (EST)

this mitt work Fellow Custer heads .am pain free for now .but for how long. I know they will be back. here something that i do every time they come back now and it has work every time so far. I go to doctor and tell her that I can not take the pain anymore .so what me and my doctor do. she puts me in the hospital for three days and give me a shot of Demerol every one to three hours. if I am in pain or not buy the last day you should have kick the shit out of the demon. if this dose not work. well you have had three days of all most pain free days .ps it seem like it mitt have something to do with getting a lot of sleep and you will get a lot of sleep Demerol dose that. you should only do this if you canít the pain anymore. it's always my last ditch effort to stop there headaches. good luck oracle@yahoo.com
john stockwell <oracle1960@yahoo,com>
shirley, massachusetts USA
Thursday, November 20, 2003 at 22:00:09 (EST)

Attention: I just called my doctor and explainned that CAFERGOT (Ergotamine) is working like never before to stop the headache!!!! She tells me that this is happening because I also take LITHIUM daily (for something else) and that THE COMBINATION OF BOTH is ideal to treat clusterheadaches. FROM THE "MEDICAL INFORMATION SECTION IN THIS SITE I QUOTE: "The chronic form of cluster is particularly well-suited for lithium treatment, with about 80 percent of patients substantially improved and remaining so for substantial periods of time (Table 6-4). During successful lithium therapy, about 60 percent of patients experience bursts of short cluster periods that are generally only mild and of short duration. ERGOTAMINE ADDED TO LITHIUM at dosages of 2 to 4 mg/day is a highly effective strategy, even when either drug alone has been ineffective (Stagliano and Gallagher, 1983). In Kudrow's (1980) experience, approximately 40 percent of his patients treated with lithium require such concomitant ergotamine prophylaxis for complete relief of headache". Good luck!!!
Juan D. Richter <decarde@candw.ky>
Grand Cayman, Cayman Islands
Thursday, November 20, 2003 at 15:00:40 (EST)

John, I was visiting clusterheadaches.com because I was diagnosed clusterheadaches yesterday at the hospital and I am trying to find more about it while I have no headache. I do not have to explain to you about this horrible suffering, nobody but you could describe any better what I have been suffering. At first, Doctors thought I had a severe Sinus attack combined with severe Migraine (both at the same time). I believed they were right because I suffer both illnesses, but I had never, ever, had so much pain before. Three horrible days with these headaches torturing me specially at 4 to 5 AM and then for the full morning. Well, I ended yesterday at the Hospital and because pain was so strong Doctors finally changed the diagnosis from the Sinus/Migraine Combination to "clusterheadaches". I lastly got two injections of strong painkillers and anti-inflammatory agents PLUS the same very effective pills for migrane called CAFERGOT (tartrate ergotamine and caffeine) that I have taken for migraine for 20 years but called differently (Sidolyl or Sydolil) while living at home in Latin America. The same headache came back this morning and I had to decide either to rush to the hospital or take the Cafergot pills every half an hour as directed. I took the pills in addition to three strong espresso coffee (they are great, great, great help) until the headache was about 75% gone in just two hours or so. I think that now that the worse is over I will be able to rest my head and try to sleep for a while. I am praying it stays as is. This is all I know so far. I hope it helps and that you feel much better.
decarde@candw.ky <Juan D. Richter>
Grand Cayman, Cayman Islands
Thursday, November 20, 2003 at 13:39:43 (EST)

I am a 36 male from FL. Today I was finally given the Name of the most terrifying, incrediable pain in my life - Cluster Head Aches. What in the hell are these I said to myself. I immediately started to research the net and found this site. I thought I was alone!!!!! I was afraid I was going to die. Two week ago I was admitted to the hopitasl for 5 days. My head felt like It was going to explode. I have had headaches b4, but nothing like this, I mean nothing. Everyone said just get some sleep and try and relax - that was a joke that seams to be the worse time - I could not express how I felt in words, my family thought I was going crazy. Banging my head against the cement pillar in my front pourch, walking up and down the street a 3:00 am; crying, screaming inside and begging to God that this pain would stop. I know very little about these headaches, what causes them how to treat them. It is driving me crazy - here I sit and I feel another GD headache is starting again, my left eye is throbing and tears are streaming out of it. The pain behind my head is escalating - I feel like I am loosing contol of my life. What just happen in the last few weeks??? I have never been so scared in my life. The only thing that looks positive tonight is I found this site. Anyone with any encouraging words please let me know. jdennehy1234@yahoo.com Thanks for listening. John Alone and afraid in Florida At the end of those 5 days I was given a prescription of Maxalt and nothing else, except a 22k hospital bill.
John Dennehy <dennehy1234@yahoo.com>
Boca Raton, FL USA
Wednesday, November 19, 2003 at 23:38:03 (EST)

My daughter is at the beginning of her second trimester of her pregnancy.. she has been having severe headaches everyday since she became pregnant. her doctors have tried everything and now have finally told her to take Fericet and varapimil. I am concerned on her taking these and being pregnant. any feedback will be greatly appreciated. thanks
Charlene <bearteddy8@hotmail.com>
Colchester, VT USA
Wednesday, November 19, 2003 at 16:30:49 (EST)

Thank God! For the Internet, Giving CH People and Whoever started this support group. Seven weeks ago I had my first attack and still counting. I hope this ends or goes into remission soon. Mike Morris IL
Mike Morris <mikemorris@morrisdecorating.com>
Chicago, IL USA
Wednesday, November 19, 2003 at 14:24:18 (EST)

thank you ERM
ed <mccloskey.edward@orbital.com>
purcellville, v.a. USA
Wednesday, November 19, 2003 at 07:44:45 (EST)

Greetings all...I'm SOOOO HAPPY! I know that's not a normal emotion being bandied about on here, but I'm picking up my Oxygen cylinder tomorrow...I can't wait! I'll keep you all posted on how it goes...headaches are getting worse each day, but I'm looking forward to some relief other than drugs...here's another remedy for some of you....I've been suffering C/H's for approximately 28 of my 35 years and for the first time the other night I tried ice packs (frozen vegies actually) and it seriously helped...place one on the back of your neck and move another one around on you temple, eye and top of head...it seriously begins to numb the pain...give a go people!
Shadow <shadowkaster@hotmail.com>
Perth, Western Australia AUSTRALIA
Wednesday, November 19, 2003 at 04:55:41 (EST)

Thank God for this website! I have been a clusterhead for a very long time. I remember my first one at 10 yrs old. My mother remembers finding me pulling my hair and crying when I was 13 yrs old. It is unbelieveable what we go through and as much as I don't want anyone to have to battle these creatures, it is nice to know we are not alone.
Paige <paigelle@yahoo.com>
Hampstead, NC USA
Tuesday, November 18, 2003 at 18:14:04 (EST)

Hello, I have just returned from seeing the neurologist for the first time! I have had these symptoms for years, in short bursts before. This past 8weeks has been the worst pain I have ever experienced. No sleep, When I do sleep launching out of bed clasping my right eye or temple. The feeling of wanting to do a Hulk impression using my head to knock down a brick wall. I have been angry, cried, up and down...emotional hell...! I am still waiting for a cat scan to check anything else is cause,but neurologist says i am a clusterhead....she has recommended beta blockers as preventative?? wondered if anyone else has tried this?? anyone got advise for someone newly diagnosed???
Russell <veilside01702@aol.com>
Westcliff-on-sea, U.K.
Tuesday, November 18, 2003 at 10:03:02 (EST)

Hello....My name is Frank....I'm a 52yr. old white male(smoker 1 pack a day) with a TERRIBLE chronic cluster condition....first a little about my history....I got my first cluster headache in 1979....soon I realized that they would be set off by beer, usually an hour after I drank one...they lasted 30 minutes on the dot...they were extremely intense....alcohol was not the only trigger....sleep....laying down with my neck cocked in a certain position....would also set them off....over the next 6 or 7 years I tried all the usual medicines....nothing worked....in the mid 80s I went to a Dr. Gallagher in Philadelphia and discovered O2 and Cafergot....o2 would shut them off when I started to get one BUT Cafergot would prevent them from coming on even when I drank which I had always continued to do. For the next 10 yrs I totally abused Cafergot..2,4,,6,8 a day taken 2 at a time...I wouldnít go anywhere without them...of course because I continued to drink and do occasional lines...I was still getting the headaches....then one day in 1997 after a heavy party binge....I just laid around in my house with no pills and suffered through a 48 hour headache( about a 5 on the pain scale).....within days(with no cafergot) I realized THEY WERE GONE....after 18 years ....I wasnít getting any headaches even after I drank...I couldnít believe it...18 years and they were gone I began to think that I might have prolonged my cluster period by abusing the cafergot(rebound headaches) but that still wouldnít account for why I got them for 7-8 years before I ever even took it. ANYWAY over the next 7 years I only had a few very short incidents with a few mild headaches...maybe a few days at the most.....BUT NOW THEYRE BACK....and for no reason....I quit drinking and all drugs 5 YEARS AGO....but about 6 weeks ago they returned...mostly at night....4 or 5 a night ,lasting for about 15-20 minutes each a 4-5 on the pain scale...every once in a while a bad one ,8 or 9...lasting a full 30 minutes...Iíve only had a few during the day but they are set off by cocking my neck or sleeping and I know for sure if I drank I would probably get a 10....IM MISERABLE...I cant believe that THEYRE BACK....I have since started taking cafergot again but only one pill a night and they work ok ...BUT I NEED YOUR HELP PLEASE...Does anyone out there know of any NEW developments that might SHUT THE CLUSTER PERIOD OFF...the thought of having them for the next 5 or 10 years is really depressing....HELP....
Fac2000 <fac2000@aol.com>
New York, NY USA
Sunday, November 16, 2003 at 09:20:25 (EST)

My cycle is coming up.I know what im in store for.The sleepless nights the pain the tears the hope of it ending soon.But its comforting to know someone is her to listen.
BRIAN ESTRADA <ESTRADAPORVIDA@AOL.COM>
NEW HAVEN, MI USA
Sunday, November 16, 2003 at 09:02:03 (EST)

so..misery loves company eh? wow, cant believe i found u after 30 years. excited and bummed at the same time..now know whats eatin me and now know i'm basicly fucked. still, i do feel better, sorry but its good to not be alone with this shit
spanooch
wa USA
Sunday, November 16, 2003 at 00:08:06 (EST)

UZOAGBA ATTN UZOAGBA ATTN UZOAGBA ATTN UZOAGBA ATTN UZOAGBA ATTN.
UZOAGBA ATTN <UZOAGBA@yahoo.com>
ASA, ASA USA
Saturday, November 15, 2003 at 12:26:20 (EST)

iv been getting ch now for 3 weeks.im getting them now so bad i can,t move i just wish there was somethink i could do or take.sorry to say it but im glad im not alone :-(
john <j.bain@ntlworld.com>
reading, USA
Saturday, November 15, 2003 at 06:03:55 (EST)

Hi all, I got to this site looking up Horners Syndrome, a much misunderstood condition by Drs. Had my 1st. CH 7 or 8 yrs. ago and I started with a bang, the pain always came about 2am. and I would spend all night lying on an icepack to deaden the pain. Went to a Dr. he had only seen this sort of thing with patients who had a tumor in the lungs, after Xrays and no tumor nothing, don't know , can't help, oh well back to the ice packs. This went on for about 2 weeks of constant screaming pain, I've suffered pain in my life and still do but nothing like this ever before or since. As quickly as it arrived it went away but, I have had Horners Syndrome ever since, the drooping left eye lid being the worsed, it some times interferes with my sight. Today I've got the start of a burning pain around my left eye and cheek bone and my gums are swollen on the upper left side, it's bearable just annoying oh, and the pupil in my left eye is a pin point plus stuffed nostril just hope that's all that happens but according to your web site I could be due for a relapse, cross fingers NO. Anyway the upshot of all this I can now go to my Dr. and talk about some medication to help, thanks to this web site. All the best to all you fellow suffers. Ian
Ian Mason <ianmason@westnet.com.au>
Gosnells, WA Australia
Friday, November 14, 2003 at 23:04:25 (EST)

Greetings again all....it's been 2 years almost to the date that I last visited this site....the dreaded beast is back! I've had 2 attacks this week, the latest being last night and I have to say that it was the WORST C/H I've EVER had. I know now after that episode that I'm entering the beasts realm, and will be held captive for the next couple of months. I'm a 35 year old female who has suffered these chronic, debilitating C/H's ever since I can remember, but they have come about every 4 - 6 years....it's 2 years since my last episode. Thankfully I had a leftover bottle of Ergodryl which I kept as a 'just incase'. Even though it's 2 years past its useby date I managed to stuff 4 of them into my mouth last night (duration of about 1 1/2 hours), thus today feeling fuzzy and dazed. Zomig doesn't work for me but I'm going to see the doc on Monday and get a script for some Oxygen therapy. It appears the side-effects from Ergodryl are quite severe and if I continue to have 20+ C/H's a week, I'll certainly be overdosing on the stuff! *shakes her head*...the dull throb is there now and it's 11.30am, not typical for me as they usually begin around 10 or 11 at night, or I wake up with one, which is worse. Nothing in my life has changed too drastically since the last cluster....very little stress, no change in diet etc...I want to know if there's anyone out there in Western Australia who has just begun a cycle of clusters in the last few weeks? I have a theory about atmospheric pressure and lets face it, we've been having extremely peculiar weather here for the last 2 - 3 weeks....drop me a line...love to hear from any fellow sufferers....peace all....may the beast loose it's way to your doorway, trip and fall away into a large drain...*sigh*
Shadow <shadowkaster@hotmail.com>
Perth, Western Australia AUSTRALIA
Friday, November 14, 2003 at 23:03:13 (EST)

Thanks!
John Keating <johnwkeating@earthling.net>
Frostburg, MD USA
Friday, November 14, 2003 at 18:28:14 (EST)

HI TOO ALL OF YOU THAT ARE HERE MY HEART GOES OUT YOU I'VE ONLY HAD THE CH FOR ABOUT 6 WEEKS DON'T KNOW HOW ALL OF YOU HAVE BEEN ABLE TO DEAL WITH THEM THIS LONG I'AM 52 YEARS TODAY NEVER HAVE HAD HEADACKS BEFOR CAN'T BELIVE THE PAIN THAT GOES WITH IT ALL I WANT TO BE IS LEFT ALONE WHEN THEY COME AND NO SEAMES TO UNDERSTANED THAT ALL WANT TO HELP THEY ARE TWICE A DAY MORINING AND NIGHT ABOUT 5AM & 5 PM LAST ABOUT 1 1/2 HRS EACH IF I DON'T GET THE MEDICATION IN TIME. I KEEP FIGHTING WITH MY INS CO .CIGNA TO APPROVE WHAT THE DR. ORDERED BUT THEY REFUSE THIS IS MY FIRST TIME WITH C H AND CNA ONLY THEY GO AWAY AND NEVER COME BACK.MY BEST TO ALL OF THAT SOMEDAY YOURS WILL ALL STOP. I NEED NOT SAY ANY MORE YOU ALL KNOW WHAT THE PAIN IS .
BARRY OSNOE <barry h osnoe>
LITCHFIELD, ME USA
Thursday, November 13, 2003 at 09:48:58 (EST)

Stumbled upon this site.I was diagnosed with cluster headaches 6 years ago.All come about the same time of year. RIGHT now in fact.Ive just gotton over a spell and its early and Im sure befor night is over I will have another.I have been taking Midren but this year seems if not caught early its no help.I have grow to hate this time of the year. And dread it.My clusters last from 1 month to 6 weeks so far then gone till next fall.Strange but the 3rd year I didnt have any except 2 days and that was a sharp pain i guess just to remind me that it was still there.After an attack I am absolutly drained of energy and my left eye feels as it has been in a vise.I dont think I could stand it having these all year long in fact I wouldnt.Not saying that Im glad some others have these things but glad to know there are those who know what I go thru. It more than hurts.I will come back to this site again believe me.
David Swords <sdeswords@cs.com>
Killeen, TX USA
Wednesday, November 12, 2003 at 22:20:31 (EST)

I just finished a three month battle with CH's. I have been fighting this battle on and off for 20 plus years. This last battle was the hardest. I'm not sure if the pain was worse or if I just can't handle it as well as I get older. But the good news is they are gone for now and I have a greater appreciation for each day, each moment, every meal, every conversation simply EVERYTHING. Don't give up and don't do anything stupid. Today might be your last CH. Best wishes to all.
John
NY USA
Wednesday, November 12, 2003 at 16:51:45 (EST)

I've had eposidic cluster headaches for about 10 years. Finally there's a place where others may understand.
Joel Gurley <jgurley@verizon.net>
Salem, VA USA
Wednesday, November 12, 2003 at 15:50:58 (EST)

ZOMIG-ZMT 5 mg work verry well for about 12 hrs. problem 75.00 for three pills when yopu have two a day it is expensive ins will only give 3 for 30 days
BARRY OSNOE <BHOZMAN@GWI.NET>
LITCHFIELD, ME USA
Wednesday, November 12, 2003 at 13:01:57 (EST)

Hi I am a 44 year old who has been suffering for more than 20 years now. It is great to finaly share with people who no what im going through. I have been in remission for about a year up until last week when it all started again. I have been looking for similar groups here in Australia but cant seem to find any so I thought I would share with you
Neil Goldfinch <neil.goldfinch@act.gov.au>
Canberra, ACT AUS
Tuesday, November 11, 2003 at 21:24:22 (EST)

great site , i have been having the attacks since around 1987 periodic , they last about 2 months and they hit me at night , wich for a 2 month period makes me a very tired man.
ENRIQUE <maren3781@aol.com>
MIAMI, FL USA
Tuesday, November 11, 2003 at 20:05:59 (EST)

I have suffered with excruciating headaches for the past 27 years and have tried everything known world wide to control the pain but everything except for one Medication that being Morphine Injections at present 3 x 30 mg daily and am now due for an increase to 4 x 30mg daily. The pain is very life destroying and debiliting so it has forced me to the position where I have to employ others to simple jobs that I used to do but now seeing as how it agrivates the headaches I am forced to do very little which is very soul destroying and pushes you to the point of contemplating suiside Doctors are against the use of Morphine for pain control so it is a battle to get increases which are necessary due to tollerence build up and the level being non effective. I detest Doctors that love to play God and love to use you as a Guinea Pig and refuse you to have the best quality of life that you can have under the circumstances which is far from being good but it is the best one can hope for and the only effective medication that works is Morphine Sulfate injections. The condition has been clasified as Terminal with no cure only treatment. It leaves you with a very low quality of life and at times you think towards seeking Euthinasia but they refuse to leagalise it so you are left with fighting for the right to use Morphine to be allowed to have any quality of life what a way to have to live.
Graham Rob <mahal@dodo.com.au>
Llandilo, NSW USA
Monday, November 10, 2003 at 08:51:51 (EST)

I have had clusters since 1985 in intervals of 18 months normally. The severity is 20 down to 5 in a scale of 10. I get 1 to 8 per day with a duration of 10 minutes to 1 hour for 25 to 30 days. I can definitley tell you, death has been an option. I take imetrex nasal or injection but without insurance is quite pricy. I at am the tail end of a series but was not ever at full strength (thank god). I have traumitized the entire right side of my neck and head in an futile attempt to rid myself of the searing pain behind my left eye and temple. respectfully kim m. flanary
Kim M. Flanary <kimthegoldsmith@aol.com>
Burlington, WA USA
Monday, November 10, 2003 at 04:22:33 (EST)

I'am Gerard, 43 years. My clusters started in the summer of 1998 during a very stressfull, confusing period. A few months before the c.h. started, symptoms of the Meniere-syndrom had started on the right-side of my head (the c.h. on the left). This gives attacts of suddenly losing balance,after increasing ear-ringing and deffness on the right-side. This attacts last also about 45min./3hours. I have read somewhere that c.h. and Meniere are in more cases found together (if you know anything about it please let me know). The first bout lasted for about two months and stopped suddenly, as did the Meniere, when I arrived in Costa Rica where I went to escape the confusing situation at home and to sort things out for myself. I stayed there a month got more relaxed and made some decisions. When I was back in Holland things were changed for me and the c.h. and Meniere stayed away for 5 years and I forgot about it, although I never forgot the unbelieveble pain. The c.h. was not recoqnised by the doctors then and I used Tramal(morfine-type) to surpress the pain which helpt when I took it at the first signs of an attack. This year in february things came back. Again first the symptoms of Meniere followed by the c.h. attacks. And again during a stressfull period. I myself found the diagnose in the lybrary and started to use Tramal again, went to various doctors. Stopped the Tramal because of its side-effects and decreasing help. I discovered that 1000mg paracetamol/coffeine when taken at the first signs of an attack helpt even better and often took that dosis right before going to bed thus often prefenting early-night attacks. Since I use sumatriptan-injections I donn't use this method anymore cause the amounts of paracetamol it takes are not healthy at all. In the mean-time I read everything I could find about c.h. and still try to learn as much as possible. Now I only use the injections (half a dosis) that work very well and sometimes the para/coffeine method when I've reached my max.injecting-dosis. And I avoid all products with coffeine besides the medicine (coffee, thea, chocolate..). It seems to reduce the pain of the attacks. In my case I relate the symptoms to long-during stress periods, maybe wearing out the normal resistans and the sympathic/para-sympathic nerve system triggering a weak point in this system. I take as extra vitamin pills and try to sleep when I must, although I know it usealy triggers an attack. I think enough sleep is more important. I also read on a german side that maybe a Herpes-kind of virus is involved. Does anyone of you know more about this? Please let me know. For almost a year now I am having the attacks and sometimes I get so tired and desperate that I'm crying like a little child. But I will continue fighting back as long as I can and hopefully with people like you, the only people who understand. I will keep you informed when I learn something new. Good luck and strenght to you all.
gerard <torro@hetnet.nl>
amsterdam, holland
Saturday, November 08, 2003 at 06:37:26 (EST)

well .that the key word for this massage. hope you all get there im just picking my brain to see what comes out as a Custer head .so sit back this could take a long time or not. seems like i donít have much brains left after ten years fighting the beast. I feel like that boxer what his name!! so many hits in the head he canít even talk now. I always went ten rounds .kip 10 hits every round. you might think how did i make it throw it well i kept one thing in my mind .my kids and how it would be with out a father. it worked!!! thank god. face it there is no cure there nothing on this planet that can stop them the most you can do is cut down the pain with drugs ha not . well time has helped . im getting old now and they have stopped for now. but Arnold was right when he said (IíLL BE BACK)he must have know a Custer head once in his life time .They always come back. that's a Custer heads life. boy it sucks!!!!!! we need to come up with a new name for these headaches letís see something that every one would can relate to. fire in the brains. how about firebrains or infernalhead. some times itís like that movie night of the living dead your dead but your not, maybe if i eat more brains the hurting will stop.
eggie <oracle1960@yahoo,com>
shirley, ma USA
Saturday, November 08, 2003 at 00:14:15 (EST)

First i want to say that this site is really good, though you could improve your design a little bit... but thats my opinion ;) here's my phentermine site: phentermine, enjoy!
Phentermine <georgekmna@aol.com>
London, NA UK
Friday, November 07, 2003 at 05:20:33 (EST)

What a wonderful site. I didn't know so many people suffered like I do. If I can ever get regeistered I would love to talk and listen to people. My Clusters started after I had a heat stroke about 18 years ago, and its awful. The pain, where does it all come from? Most of the time I wish I were dead.
Carol Huey <tinyhuey@pathwaynet.com>
Stanton, Mi USA
Friday, November 07, 2003 at 03:46:50 (EST)

Greetings Clusterheads, I'm a fifty year old male who has had cluster headaches for 20 years. My dad and grandfather had them, and my uncles and some of my cousins, male and female, have them. They do eventually outgrow them in their 50's. There wasn't much of a pattern in the early years, but as the cycles evolved they established a progressive pattern of increasing frequency and severity. The same pattern characterizes each "season of pain". My longest remission was 14 months. The key phrase in identifying cluster headaches is "pain behind the eye", and the associated tearing or Horner's syndrome. Imitrex injections are my best relief. Imitrex pills are too slow, they probably work for migraines but clusters come on fast and strong and require treatment at the very first twinge of a headache. Imitrex nasal spray only works on the first few headaches of the season and then I need to use the injections. Last month I had 126 headaches and I'm averaging 6 a day this month. I'm finally building up a tolerance to the shots, or the headaches are worse, or both, but the relief reaction time has increased from 7 minutes to 20+, and by the end of 20 minutes my headaches are full blown. There appears to be no side effects to such a large dose of Imitrex, but I do wonder about the long term effects. However dissipating the pain is my immediate and top priority, so I do what I have to do. Headache is such a misnomer, these are head attacks! A non cluster-head will never understand what you're going through because they will never experience such levels of pain. They can relate to physical, cellular pain, but the agony of a cluster headache is molecular. Every little atom in your skull is receiving an electro-chemical message to dilate like a muscle cramp. So it's a fine, exquisite pain that increases in pressure until you enter a state of disbelief that the pressure won't kill you, and then it gets 100 times worse. You may want to die but the headache itself will NOT kill you. Imitrex is a vasoconstrictor that reverses that signal and slowly reverses the pressure in your skull. It does not block pain, but it will reverse the pressure and turn the headache around. When I can't afford the Imitrex I resort to Stadol Nasal Spray which is a powerful, but highly addictive, synthetic narcotic that can actually block the pain of the entire headache. Morphine doesn't dent my headaches but Stadol leaves me "comfortably numb" throughout the headache and several hours after. Stadol is not a long term answer but it can provide relief when you transcend the Kip scale. Nothing I've tried seems to stop the cycles from coming back and the seasons are totally random. It's out of my control and these headaches do what they want to do, so I count my blessings that Imitrex exists and my state health plan provides prescription coverage. I had to get a neurologist to request an exemption with the insurance company for the monthly refill, so I now get 9 boxes a month and save them up during remission. Start keeping records of every headache, doctor, and treatment. We're all on a learning curve of hope, and I hope that my words can help someone out there as much as this website has helped me. Thanks.
Knight <none>
here, USA
Thursday, November 06, 2003 at 15:47:08 (EST)

I have been suffering from cluster headaches for probably close to twenty years. I have been going through the worse episode I can remember. This time they seem to be moving in. I hope and pray that I am wrong- MichaelP
Michael Pitcher <mdp612000>
San Bruno, CA USA
Thursday, November 06, 2003 at 12:07:02 (EST)

i am suffering from headache for past 15 years, it strats painig at one point of my head and spreads to other, in extreme stage i get vomitting and stomach upset, i'm using nalgis. but i heard that nalgis is not recommended tablet. is it is possible to have a permanent cure. i'm 30 years old.
rani <athma_ka>
coimbatore, tamilnadu india
Thursday, November 06, 2003 at 05:40:02 (EST)

I suffer from c.h. since 5 years now and looking on every information that can bring me (and us) closer to a better treatment of this horrible desease. I have a question that comes from a thought: as far as I know most of the treatments are based on supressing the effects of the para-sympathic system none of them on stimulating the sympathic system. For I think it might be possible (fot various reasons that I can explain)that not the para-sympathic system is failing but the sympatic I wonder has there ever been research on this or is there any known treatment (f.e. with adrenaline?)tryed on c.h or migrain? Please if you know anything give your reaction. The best for all of you. Gerard
Gerard <Torro@hetnet.nl>
amsterdam, Holland
Thursday, November 06, 2003 at 02:14:06 (EST)

Hi i have been a ch sufferer for about 8 years now and have been in remission for about 5 years until last week when the devil returned. Have been prescribed a fairly new drug called rizatriptan which is in wafer form which dissolves in the mouth and acts within 5-10 mins. Well fingers crossed because have just had to take the first one, will keep you posted. Take care all.
john brace <john_brace@hotmail.com>
somerset , england
Wednesday, November 05, 2003 at 16:54:37 (EST)

I have had ch's since 1971. I have been ON JUST ABOUT ALL THE DRUGS LISTED IN THE LETTERS FROM THE SUFFERERS ON THE WEB. I'm 60 years old now and have had C H"s for over 32 years. back when I first started getting them the medical profession was'nt too up on the syndrome and thought i had a brain tumor. after many tests doctors drugs and money, i still suffer with these damn things. As I became older I thought i was over them AFTER 5 YEARS OF NOT HAVING ONE two weeks ago they started again, and i'm going through an episode now.please don't mind the bad English and typing.anyway in order to have any relief I have been using EMITREX NASAL SPAY. it stops the pain in about 15 min, instead of the normal 45 to 60 min. someone mentioned cocain hydrochloide in one of the articles. i remember reading about this treatment in the "JOHNS HOPKINS" medicle journal. I called my doctor at that time who was considered to be the dean of headache doctors in the Ceveland area, well needless to say when i explained to his secretary what I wanted to talk to him about she hung up the phone on me. What I would like to know is, has anyone out there tried this treatment?? is there anything new. Im sick of going to the doctors, Im sick of these C H"s and Im at my wittsend. If anyone reading this has ANY HELPFUL SUGGESTIONS PLEASE LET ME KNOW at firejmm@worldnet.att.net. God help all out there that are suffering from these demons and pray for a cure.........J.M.
JOHN MONTINI <firejmm@worldnet.att.net>
westlake, oh USA
Tuesday, November 04, 2003 at 16:26:21 (EST)

Hi, Please excuse the length of this message, but this is my first one. I am going to echo everyone else's words by saying that this is a wonderful site. I am 52 years, married to Geoff my wonderful and supportive husband and I have 3 grown up children. I have just been diagonised with cluster headaches. I have suffered attacks of excrutiating pain for 5+ years now, but have had trouble reaching this diagnosis. The attack that made me seek medical help was just over 4 years ago. I had been sitting in the car with my husband whilst we waited for our daughter when the onset of a cluster began. The cycle lasted for about 25 minutes and my husband drove me straight to the doctor. This was mainly because I was trying to pull my hair out while we were driving along. I was unable to sit still in my seat and I was very irritated. The doctor told me I had Trigeminal Neuralgia and that day I was so happy that someone seemed to understand how I felt. My symptoms are much the same each attack. I get pain in the back of my head behind my left ear which radiates to my left eye and down through my left top jaw and out through my eye tooth. The pain in my eye is so bad that I can't move it at all. I feel like someone is trying to drill a hole through my eye. My left nostril blocks up and my eye waters. I have been taking dialantin for the past 4 years as I had been previously diagnosed with trigeminal Neuralgia. I joined the Australian TN association 3 months ago and realized after the first meeting that I don't suffer from that nasty affliction. Members at the meeting were describing how a hair brushing against their face could bring on pain, or how brushing their teeth or putting food into their mouth would bring on pain. I have mistakenly associated eating as a part of my symptoms because I learnt early on in my pain cycle that I get this most excruciating pain about 20 minutes after eating dinner. My neurologist pointed out that it is the time of day that is the common culprit here, not the fact that eating somehow causes the pain. I also could never understand why I mainly seem to get the pain of a night time. I do occasionally get woken up from my sleep soon after going to bed, and I do get other attacks of pain throughout the day, but I have mainly concentrated on the night time attacks because they are as regular as clockwork during my 4week episodes. I don't know if anyone is familiar with the Melbourne Cup horse racing carnival or not, but it is the biggest horse racing event in Australia and takes place in Melbourne on the first Tuesday in November each year and today is Melbourne Cup Day. It is a huge day for us Aussies and everyone takes time out to celebrate. Today I celebrated by having a Cat Scan. I don't expect (I hope not) to find anything on the xray, but I am glad that the new neurologist is being so thorough. I am going to wean off the Dilantin and start the new meds as soon as my clusters return. Believe it or not I am expecting that nasty demon to return within the next couple of weeks because in the past couple of years I have been cursed with them for Christmas. I am pain free at present. It took me 3 months to be able to see my new neurologist so the pain episode of August is long gone. I wish you all comfort and kindness and God Bless. Sue T.
Sue <Trinibin@hotmail.com>
Brisbane, Qld Australia
Tuesday, November 04, 2003 at 12:02:45 (EST)

What a great site. Such a relief to find a place where others know what we are going through. I have daily migraines, at least I thought they were. Now I"m wondering if they are cluster headaches. Smoldering, hot pain behind the eye, a hot poker going right through the middle of my head, pain in my righ eye, ear and cheek. I stated getting the odd one in my early twenties. However, I suffered a sever whiplash injury about 15 years ago, and it was about 10 after the accident that the migraines started to get really bad. My Dr.(anesthetist/pain specialist) said this is showing up in the post whiplash data. I'm taking Topamax which has help quite a bit, but I still have to take other meds for breakthrough pain. I find I feel so guilty because I often can't participate in things I want to, especially with the children, and that gets me down. Its a viscious circle. Difficult on the whole family. Because we don't have an obvious injury or disability like a cast on a broken leg, no one, and I repeat, No ONE know what we go through, just to get through a day. Hang in there everyone
Anne <anne_123_ca@yahoo.com>
Toronto, On Canada
Monday, November 03, 2003 at 22:16:45 (EST)

Have been a cluster sufferer for 30 years. Started when I was 18, now 48. Every two to three years. Nothing found yet to cure them. That SUCKS.
Tom Paxton <tlpaxton@charter.net>
Cumberland, MD USA
Monday, November 03, 2003 at 08:34:29 (EST)

cluster headaches for 16 years if you need info email me
Jack gillette <turbo20013@comcast.net>
mount laurel, nj USA
Sunday, November 02, 2003 at 23:32:04 (EST)

Imitrex alternative. Have recently been shut off by my insurance for Imitrex injectable. Like a lot of us it has kept me out of the ER for years. While I fight it out with PacifiCare my speacilist prescribed Lidocaine. Comes in a liquid and use a few drops in the nose at the onset of an attack. It's no Imitrex and wont stop a 10 however it has helped slow down and surpress some of my attacks. Relatively inexpensive($10 for a bottle of it's generic with any insurance)and lasts a long time. It has really helped me with life with out Imitrex. For anyone that has multiple attacks per day and can't obtain Imitrex it's worth a try. Hang in there evryone! Glenn
Glenn Huston <glennhuston@yahoo.>
San diego, ca USA
Saturday, November 01, 2003 at 00:10:22 (EST)

 

 

 


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