Cluster Headache guest book
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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 October 2001. Thank you for your continued active involvement in this site and keep those guestbook entries coming!

 

 

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I was so pleased to find this site. Its really nice to find im not alone. Never met anyone with CH before. The next 6 or 7 weeks are going to be a pain in the proverbial yet again. Mine come around about every 18 months, but this time it was nearly 2 years. My first thoughts are always what have i got planned for the duration of my bout this time. I can handle it at home, my wife is very understanding and if i catch it early 2 ibruprofen can help a lot but when it comes to going out socialising it can be a real pain. "What not drinking tonight" is the usual comment. I usually drive just so that i have an excuse to be drinking coke! Anyway hopefully i'll be clear for Christmas. Hope to meet some of u in the chat room 1 day.
Paul <talk2me1day@hotmail.com>
England
Wednesday, October 31, 2001 at 19:28:52 (EST)

well, hello at last, its taken me too long to find you and get in touch. sh.. i dont belive it back in 10. i dont have to explain where i've been do i? hi, my name is max, i have suffered with cronic ch for around 18 yrs and things are degenerating. 4 years ago my career went pear shaped, i am a photographer, a very good one! but i was operating in an environment that many consider bad for your health-the fashion and advertising worlds, say no more! to cut avery long story short, i moved away from the london party scene to rural cambridgeshire leaving behind knowlegable gp's and the 'london' and now i seem to be fighting a losing battle with local doctors and the local health authority who seem to be refusing to allow me to return to the one place in this country that understands and who can really help. i can no longer afford private treatment! my wife is at the end of her tether with me and the ch's. i could write a book on my experiences here but time is against me. signing off for now, max. p.s. is it possible to contact dr. goadsby via e-mail?
max bradley <max_bradley01@hotmail.com>
england
Wednesday, October 31, 2001 at 09:23:24 (EST)

First of all, sorry for my english, my mother language is portuguese. My boyfriend has cluster, he told me about your site. But still I don't get HOW I can actually help him, specially because he becomes really estrange to me when the "thing" starts, not wanting to see me at all and insisting in being alone all the time, what I really dont understand, because I think that when you're sick, you want someone to take care of you. BUt he doesn't let me get close to him, like, doesn't let me even go over his place. Please, help me at least understand why he does things like that. I hope If I understand a little whats going on, I'll be able to give him some help or maybe some relief.
Luciana Miquelini <luciana.miquelini@br.andersen.com>
Sao Paulo, SP Brazil
Wednesday, October 31, 2001 at 08:38:19 (EST)

Hello, I'm a 35 year old male and happily married. I think I have cluster headaches. I'm having an MRI and MRA tomorrow to confirm but based on the quiz it looks highly likely. I work in the IT industry and this is an excellent organised and informed website. Congratulations to the creator as its excellent. Chris
Chris Deakin <ChrisLDeakin@hotmail.com>
Yukon, OK USA
Tuesday, October 30, 2001 at 19:28:42 (EST)

I am a 41 year old woman with a loving husband and three teenage kids. I have suffered with headaches most of my life. Up until 11 years ago, they were migranes, happening now and then. I now have clusters which usually begin in the fall and last anywhere from 6-12 weeks, 3-4 headaches a day. I have seen numerous doctors and have been told by most that what I have could not be a cluster because clusters are prevalent in men. After seeing 3 or 4 neurologists, it was a family doctor that hooked me up to Imitrex - my life saver. It was also the same family Dr. that prescribed prednisone - another savior. My family sees this together, intellegent career woman reduced to a screaming, head banging fanatic once a year. I can not function during a "bout". I have had suicidal thoughts and thank God that I eventually get past them. Now that I have the medicine I am better, but not cured. I fear the medicine itself, as I am prone to taking the shots more than the two times a day as recommended. I am happy to have found this web-site. Please keep up the information. The more we talk, the more likely it will be that we will find a cure.
Dana Jacobs <danaj60>
White Bear Lake, MN USA
Tuesday, October 30, 2001 at 12:54:13 (EST)

Ive had cluster headaches for about 30 years...As I get older thankgod the clusters get farther apart. But they don't go away altogether. I can't wait for the time they never come back
Steve Michelson <SteveMiche@aol.com>
Chatsworth, Ca USA
Tuesday, October 30, 2001 at 01:30:34 (EST)

Hi, all. I just found this site yesterday (10-28-01)and as you all felt, I was soooo happy. Although I knew there are people who suffers from cluster headaches as I do but never did encounter with anyone, made me feel alone. But now I know you are there and searching like I do, looking for help, support and comfort. Anyway, I've been having cluster headache since I was 17 yrs old and now I am 37. I used to have 1-2 or 3 a day which last about 2 hrs for about 2 month and goes away for aoubt 6 month to a year. but lately its been gone away for about 2 years. (I guess you can say I am getting lucky lol) I am glad to meet people who I dont have to explain what I am going throu and what kind of pain I am having... I have red some of the messages on message board and couldnt believe how most stories are similar to mine! Knowing we are dealing with same thing makes me closer to everyone and feels like I've known them all like a family. I will be visiting this site regularly as possible to learn and to help if I can... Thank, Jay
Jay <jayjso@home.com>
Tacoma, WA USA
Monday, October 29, 2001 at 21:35:07 (EST)

I am 23 years old, and had never had serious headaches until about a month ago. Since then I have had a series of what feels like intense 'ice cream headaches' that hit all at once last 2-3 hours and then dissappear. They feel like a sharp pain right behind my eyes- like I've been welding all day without a mask on or something. A really harsh one hit me at work, and I had to leave in the middle of the day - there was no way I could work with the pain. My doctor diagnosed them as cluster headaches - something I had never heard of at the time, and put me on Axert. Last night I had a headache that lasted all night, and even as I type this the pain hasn't completely gone away. I've not been able to figure out what triggers them. The first two times they happened, I was on an airplane, and I blamed the pressure change. The 4th time was right before a huge thunderstorm, but the other times, including last night, I've not been able to pinpoint anything that would have caused them. I live a very active lifestyle, and I really can't afford to be slowed down by cluster headaches. Is there any cahnce they'll just go away as mysteriously as they came?
Chris Moore <sporqster@msn.com>
Evansville, IN USA
Monday, October 29, 2001 at 15:16:15 (EST)

I remember having headaches back in high school. I am now 39 yrs. old. I didn't really find out what they were until I was in my early 30s, so I suffered all that time thinking they were just a "headache". The thing I really don't like about these is their coming and going. Just about the time you think they're gone, and maybe gone for good (one could only hope), they return. The longest mine have been in remission was about 2 yrs. I've tried a couple different types of medications, but within the last few years of the clusters returning, the medication doesn't seem to be working as effective. I take imperamine(sp?)as a preventive, and Zomig for the pain. The last time the headaches returned, my Dr. put me on prednisone until the imperamine kicked in. A week later no more headaches for almost 2 yrs. They're back!! I have been on the imperamine for about a month now, and even doubling the amount 50 mg instead of 25. My Dr. put me on prednisone again. No headaches for about 4 days, THEN 2 in the last two days. Some day's all I do is cry. Partly because of the pain, but mainly because of the trying to deal with them until something works. My headaches are probably not near as bad as some, but when I have them, I can't function, all I feel is the pain. There is no sleeping when I have one, hot/cold doesn't work, regular medication doesn't work. I've tried different things, like stopping caffine, even thought it might be something in milk products. The headaches seemed to go away for a little while. Just when you think you've found the answer.....BAM, they return. My headaches, on average, seem to come on about every other day. This time they seem to be more often. I know what most of you are going thru. It's great to see there is a place where we can go to be there for each other.
SCOTT <pudntwns@midwest.net>
st. louis, mo USA
Monday, October 29, 2001 at 14:53:41 (EST)

I am a wife of a cluster sufferer.(spell?) My husband started getting them when he was 17. He had a break for 5 years. He is now 28 yrs old and was having 6 headaches a day for 3 weeks. His employer suspended him for 5 days without pay for calling in because of his headaches. claiming excessive absentism. This is wrong this a medical problem. I know maybe somebody out there has had this problem with their jobs as well. I think we need to educate people with this medical problem like going to 20/20 or 60 minutes. Maybe people will be more sympathetic......My husband would always take doctors notes. My husband would say I wish my boss would get a cluster and maybe he would know how I feel. The neurologist gave my husband medication and he takes it 3 times a day and its helped but he is always sleepy or hungry (side effects) and nausea. But he says he would rather feel this way then have a headache. I support my husband and sympatheize (I cant spell) with him. I wish there was a way to really get this information out and for those whose employers are not understanding maybe there is something we can do. email me if you have any ideas anyone. Im ready to listen and so is my husband his email is : Chadfetti@yahoo.com
DEBRA VEAZEY <GIJANEXX@HOTMAIL.COM>
AUSTIN, TX USA
Monday, October 29, 2001 at 14:08:10 (EST)

Well, I'm new here and I have many questions. I have been dealing w/ these headaches for approx. 4-5 yrs. Recently they have gotten slightly worse and it is time to try to take some serious action. I plan on doing some searching for some of my questions, however, before I begin to post. I often frequent some Mustang UBB messageboards and I know it can be frustrating w/ newbies constantly asking the same questions. -Matt
Matt Zeman <caz713@yahoo.com>
Raleigh, NC USA
Sunday, October 28, 2001 at 22:30:36 (EST)

Hi, I suffer from cluster headaches for 20 years. During many time I though it was sinus headaches. After some self investigation I found out this bot unusual type of headaches. Inf fact I know anybody else with the some type of headaches. After visiting a doctor he has confirmed such diagnostic but only prescribed me strong analagesics. I would love to know if there are any kind of more effcient and long lasting treatment. Thanks.
Alvaro Oliveira <alvaro.foliveira@clix.pt>
Lisbon, Portugal
Sunday, October 28, 2001 at 16:53:03 (EST)

Twenty-five years of episodic clusters. At the point where Tylenol will provide some relief
Robert emenheiser <rse1234@yahoo.com>
Royal Oak, Mi USA
Sunday, October 28, 2001 at 08:35:12 (EST)

"I Keep On Searching" As a Biologist I research often to learn all I can; But even so, I must rely on my spirituality to help me cope; And sometimes coping is the hardest part. I wish I could help others: I wish I could help myself: And I worry that I have passed this genetic defect on to my children. So as "Ronnie Van Zant" once said "I Keep On Searching"
Donna Medlengough <h.davisiii@worldnet.att.net>
WV USA
Saturday, October 27, 2001 at 19:51:21 (EDT)

Hello. I started getting ch at about age 12. I am age 38 now. I was diagnosed at the age of 36. Up until then I believed a number of different tiggers caused the pain; weather, stress, brain tumors, etc. As I read the information available on this web site, I realize there are people who actually understand what it really is to have a ch. One difficult aspect of this problem is trying to make nonsuffers understand what you are experiencing. Thanks for the great info and I will keep logging on.
gillian alessio <koolhouse53@msn.com>
Santa Fe, NM USA
Saturday, October 27, 2001 at 18:26:09 (EDT)

Hi. The CHs started for me when I was 17 1/2. Now I am 37 1/2 years (yes, I still count halves). So, I guess that I have had these for 20 years. I usually get mine every couple of years. Each cluster can last anywhere from 3 weeks to 5 months and each headache will last anywhere from 1 to 5 hours (and thats the major headache--not the residual). Luckily, I have had some wonderful doctors that know about CHs. I also have a very loving and supportive wife. We are going through a cluster right now (a week so far). My boss also suffers with migraines...so she understands too. Imitrex is good as long as I can catch it during the "pre-game activities." I read the Kip scale. My wife and I laughed at the 8,9 and 10 levels... That's all we know. It's good to know (and sad, as well) that there are so many of us. We will survive.
Michael <minemi@prodigy.net>
Henderson, NV USA
Friday, October 26, 2001 at 23:54:44 (EDT)

I have not had the opportunity to explore this entire as of yet, but I do look very forward to doing so. As the fiance of a 32 yr. old male with a severe case of CH, I am here to learn, share in your pain, and most of all, looking for creative ways to avoid depression in this trying time for both myself and my fiancee.
Tricia <vixenkarlee@aol.com>
Fuquay-Varina, NC USA
Friday, October 26, 2001 at 22:56:37 (EDT)

I have been under a lot of stress lately--buying a house, pressure at work, etc--and have not been eating right nor getting enough rest. Started to have small episodes with pain on the right side of my head where the neck joins the head, temporary blurry vision in my right eye, and some nausea. The duration of these episodes has increased recently, until I was awakened shortly after going to bed the other night. It was the WORST PAIN I had ever felt. Accompanied by SOARING heart rate (probably not helped by diet, rest, stress, etc) and pain that radiated down the side of my face on that right side. Ear and nasal passage on right side felt congested. Touching/pressing on the area on the back of my head made the pain worse. Was sweating profusely. Went to the ER where my blood pressure and heart rate were found to be "abnormally" high. Both seemed to fluctuate in conjunction with the pain in the back of my head. Diagnosed with Tachycardia (fast heart rate--yeah, no kidding). The MD was more focused on the heart rate and blood pressure (I was feeling "tingly") than the pain in my head (which I had rated a "10" at onset but had since abated to an "8" by the time I was seen at the ER). The MD could not explain why the area on the back of my head felt tender (like the "goose-egg" you get when you bump your head, though I had not injured my head) nor why I felt congested on the right side. He did, however, say it was probably a "tension" headache. As of today (two days later) I feel much better, but the area on the back of my head is still tender, though not nearly as much as it was at the time of the episode. From what I've been reading, it sounds like tension headaches and cluster headaches are nearly synonomous. I'm curious to know how my experience compares with other people's first expieriences with cluster headaches.
Frank Tuttle <womp.rule@verizon.net>
USA
Friday, October 26, 2001 at 11:54:13 (EDT)

It started at about 24. Just every few days then would stop for a while.Just found 2 years ago it was not a brain tumor that was exploding in my head every 8 hours, 6-8 months out of a year. Thankful my wife read in a magazine about these headaches and it is great to find this site. I have tried so many things to help this pain stop and finally someone that understands. I have been the lithium, depokote,prednisone, with the imitrex for pain approach. Now a doctor found an approach with topamax(for epilepsy) that seems to help with maxaultfor the pain. I know your pain been there going there now gotta go
John <Jhawke11@msn.com>
ST PETERS, MO USA
Friday, October 26, 2001 at 11:06:26 (EDT)

These headaches started for me when I was 21. Just a sip of alcohol at the time would send me into 1-1.5 hours of screaming pain. Needless to say after a year of this abuse I stopped drinking. Guess what? headaches stayed with me. I am now 34 years old. Three years ago I had a sezure, probablly from taking 15+ ultram a day, anyway I was put on Dilantin 500mg daily and my headaches stopped. Well now the are back, and worse than ever. The Dilantin was probablly just a concidence. The Nuro MD has just put me on Lithium and wants to cut back on the other med. Imitrex kicks butt, but my insurance company will only give me 12 a month!! Anyone out there that has stories about Lithium, Imitrex or Dilantin I would love to hear from you.
Daniel Matalucci <mataluccid@netscape.net>
Chandler, az USA
Friday, October 26, 2001 at 00:27:35 (EDT)

Just found the site! I can't explain how happy I am to know that this is available. I have told my family and friends about it so the can check it out. Eventhough nothing seems to help, I look forward to logging on to this beloved site. Thank Goddness.....
Dave Whatley <davidwhat@home.com>
Lakewood, Co USA
Thursday, October 25, 2001 at 17:58:14 (EDT)

I was browsing the web looking for answers when I came upon your website. I have been to 2 neurologists,ENT,a chiropractor,and a physical therapist trying to determine what my problem is. I have the same symptons as a cluster headache in that it is localized over my left eye and temple, and it starts while I sleep. The pain is excruciating and I am just about at my wits end. I have had these headaches for approx. 8 years but they are getting more intense and more frequent. The differences in my headaches and the ones I have read about are that my last from 6-10 hours each time and occur about every 2 days. I was reading in the kip scale that it said something about dancing! What does this mean? Is physical exertion one of the helpful relievers? Please email me with any helpful information you may have. I would greatly appreciate it! My email address is ktrab@knology.net! Thanks, Kim
Kim Raborn <ktrab@knology.net>
Augusta, GA USA
Thursday, October 25, 2001 at 17:22:51 (EDT)

Hello CH sufferers! I am a 45 year old male who has had clusters for 30 years. After not having them for the past 25 months, I thought they were gone for good.(Everything I've read says you tend to "grow" out of them in your 40's) but to my horror THERE BACK! Maybe its my imagination but they seem to be worse than ever!!! I've had an EXTRA hard time dealing with this bout and have felt like I can't cope with them anymore!!This is my first time on the site and although I don't wish these headaches on anyone its nice to know I'm not the only one going through this HELL!!! People who have never had a CH don't have any idea of what I'm going through!! (AND THAT INCLUDES MOST DOCTORS!) I've tried virtually every medication listed on this site including a glycerine injection (BIG MISTAKE) WITH LITTLE OR NO SUCCESS! The only thing that works is IMITREX INJECTIONS (truly a miracle drug for me!) BUT...... because I can get up to 5 CH'S 1n a 24 hr period, I have to pick and choose when to get relief and when to suffer!!!! One of the hardest things about CH'S is knowing that over a 6 to 8 week period I'm going to go through this 100 TIMES OR MORE! AHHHHHHHHHHHHH!!!!!! Having gone the past 25 months without a CH, It has made this bout that much harder to accept and deal with. I truly believed they were GONE FOR GOOD! (WISHFULL THINKING I GUESS.) THANKS TO ANYONE WHO IS READING THIS. I APPRECIATE KNOWING THAT THERE ARE PEOPLE OUT THERE WHO KNOW EXACTLY WHAT I'M GOING THROUGH!!!!GLAD I FOUND YOU!!!!
TIM T. <TTHOLDEN@HOTMAIL.COM >
WINNIPEG, MB CANADA
Thursday, October 25, 2001 at 12:46:07 (EDT)

30 year old male... started the CH routine 6 years ago. The last for about 2-4 months but I do get about 9 months off (give or take) so I can't complain. I am sorry that you all belong to the club, but its nice to know someone understands. L
lucian <ddjem@netscape.net>
Brampton, Ontario Canada
Wednesday, October 24, 2001 at 20:59:10 (EDT)

gypsy-geo,ch, since 1995-----still going strong today,just stumbled across this site yesterday,,,,yahoo,,,is the wrong site,lol,,,,,glad to know i'm not alone,but that means all of us are suffering,,,,,trying to find a dr. who knows what a **cluster headache is ***in pasco all they treat is geriatrics,,,,,and i'm not ready to go there yet,,,,thanks for a place to vent,,,,,,,,,,,geo
gypsy-geo <gypsy@ij.net>
Port Richey, fl USA
Wednesday, October 24, 2001 at 20:43:32 (EDT)

Can't handle these headach much longer. Cluster is right they cluster me into a dark room with pain, I take pain meds. as soon as 1 starts. I will not hurt if there is something to stop the pain. I've had them for 25-27 years.
Barbara J. Larson <theplace4ply@hotmail.com>
Tulsa, Ok USA
Wednesday, October 24, 2001 at 17:55:22 (EDT)

I have had migraines since age 18 and for the past 10 years have hardly missed a day. I take triptan drugs every day and thought I was a total freak until I started looking on the internet a few weeks ago. You can hardly take comfort in other peoples suffering but it is nice to meet you just the same. Glennis
Glennis Parker <glennis.parker@btinternet.com>
Crawley, England
Wednesday, October 24, 2001 at 15:17:25 (EDT)

An episodic CH sufferer for over 20 years. On verapamil (decreasing effectiveness...) for prophylaxis and now on O2 for abortive Rx.
James Riley
Laconia, NH USA
Wednesday, October 24, 2001 at 06:19:10 (EDT)

A cluster migraine sufferer for 26 years and going through another series right now. Once every three years I go through this for 2 months. The only relief seems to be oxygen and imitrex. Quite costly as well.
Greg Skorohod <Gregskoro@AOL.com>
Lincoln, NE USA
Tuesday, October 23, 2001 at 16:01:17 (EDT)

I have been suffering from cluster migraines since 1993 - I am in the mist of my first clust since teh winter of 1998 as we speak Things are tapering off - I haven't had one since Friday 10/19/01 - I have had some success with "Zolmif". It is called Zolmatriptan.
Tim Dever <timdever@aol.com>
Woburn, ma USA
Tuesday, October 23, 2001 at 14:04:18 (EDT)

Hi, I have just begun a ne cycle of cluster atacks after being free of them for 4 years.I spent last night virtually glued to an oxygen tank, which although it got rid of the attack, did'nt prevent the next one occuring after approx 1 hour of falling asleep again - consquently I am feeling rather spaced out after 6 attacks! I would be interested to contact anyone - especially women, who feels that blood pressure, hormones etc. may play a part in this horrible condition.
Sharon Woodley <sharonwoodley@hotmail.com>
london, England
Tuesday, October 23, 2001 at 07:04:40 (EDT)

saying my hello...Im 22, got diagnosed a year ago, been without headaches until last week, am currently somewhere in the middle of my second #&!%* round. I was diagnosed in the States and took a couple imitrex samples with me-they are now gone and Im waiting in fear (terror?) for the next headache, really do not want to do this without drugs. got some good information from this board though (thankyou) and will do what I can to improvise. in solidarity, tchau
gregory <cyrogerg@hotmail.com>
Salvador, Brasil
Tuesday, October 23, 2001 at 06:53:08 (EDT)

I could not bellieve the similarities that I have tht I could not figure out why I had thwm with this strange no go away headche, what a eyeopener!!!
sue urso <puplad@aol.Com>
st cloud , fl USA
Tuesday, October 23, 2001 at 03:42:02 (EDT)

"King of Pain" a title I would give up in a heartbeat... No drugs, no preventative measures will work, I have been a sufferer of "cluster headaches" for 10 years now, they seem to go on vacation for awhile, sometimes a few years but they always come back "I'm BAAAACK", my attacks I know are coming as much as several minutes, I feel this sensation in my head, like a release of chemicles or flow of blood, dosn't hurt mind you, then bammmmm, I am wrestling with the demon, sooner or later I win cause he just disappears, in a split second, the peaky, lightning bolt, electricle impluse feeling pain is gone in an instant, clarity comes fast, I have never been happier as to when they disapear, elated, whole again, euphoric... I never use the drugs, I always ride them out, I have learned, nothing, nothing will be able to stop the Peak, that's why I am the "King of Pain"
KING OF PAIN <STEVECOIT@YAHOO.COM>
COVINA, CA USA
Monday, October 22, 2001 at 18:34:39 (EDT)

Hello, I have had pause for 4 - 5 years regarding clusters, now there back with a vengence. Nothing put riding them out seems to work.... I sometimes feel I am being punished for something , I wouldn't wish the peaks on my worse enemy... well, Just felt compelled to fill out the sign in, I am sorry I am not alone with these, like I said , I would not wish these on anyone....
Steve Hernandez <steveh@la.coit.com>
Monrovia, ca USA
Monday, October 22, 2001 at 17:35:42 (EDT)

Hi, I'm a 25 year old female suffering for about 8-9 years now and I haven't posted anything on this site for about a year and a half which to be honest was such a relief cause it meant I wasn't getting any attacks ! But now the demon has come back. I've had 5 attacks in the last 9 days, they just seem to get worse every time they come back. I have tried so much medication but it just makes no difference, I'm fed up being prescribed migrane tablets which make no difference. I've taken imigran, zomig, migranet and am on sanomigran for prevention at the moment but of course it has absolutely no effect as I still get attacks regularly. I was thinking of trying a homeopathic remedy for a change, I mean there has to be something to reduce the pain that I am going through and after 8 years of suffering I still haven't found a substance to reduce my pain. Has anyone got any ideas or has any of you tried any alternative medicines? Maybe you would like to share your experience of them with me ! I just keep hoping that my recent attack will be my last one but for some reason or another I'd say I've at least another 6-8 weeks of suffering left. Anyway till the next time ... Cheerio!
Marian Conroy <marian.conroy@infor.ie>
Cork, NA Ireland
Monday, October 22, 2001 at 07:26:01 (EDT)

Hi all. I am a 42 year old woman from Denmark. I have suffered from CH (also called Hortons headache here in Scandinavia) since i was 17 but correctly diagnosed when I was 23. My cluster period comes approx. once a year and lasts for about 3-4 weeks. Most attacks appear 2 hours after I fall asleep and in the morning. I started on oxygen 4 years ago, and that really help me...only 2 - 3 attacks in a whole 4 weeks period will strike through with full power...sounds great, eh???:-). Here in Denmark the oxygen is completely without any cost for me - totally free. I just call the *oxygen-man*, and then he comes with a new full tank for me...day or night. I have a small tank to use when I go out and a BIG one to keep in the house. The *oxygen-man* also learned me to use the correct technique, using the oxygen. My doctor knows only 2 people who suffers from CH, but the oxygen-man delivers to at least 25 patients! I'm glad that i found this site, take care... Love from Helle, Denmark
Helle Bro <clemmensen@mail1.stofanet.dk>
Aalborg, Denmark
Wednesday, October 17, 2001 at 06:31:30 (EDT)

I have started another series of Cluster Headaches a couple of weeks ago. The have lasted anywhere from 4 weeks to 9 weeks.I am not just starting imitrex never have used this drug, but will give anything a try.Thanks for your info. on this web site. Mary
Mary Gillespie <mrggillespie@inter-linc.net>
Reeds Spring, MO USA
Tuesday, October 16, 2001 at 14:38:34 (EDT)

Hello out there, My name is Marilyn Green. One of my co-workers who suffers from cluster headaches has asked me to share my story. About 4 years ago I decided that I just had to do something about my headaches, being sick 4 days out of 7 was a drag. I would spend 4 days with a headache, in a dark room with my head under the covers doing my best to block out all the light and noise. Finally, I went to a Neurologist who diagnosed me with headache disorder. She just couldn't seem to control them and ordered a MRI. The report came back that all the arteries in my brain were blocked and it was thought at that time I was living in stroke city. I was immediately placed on blood thinners and many other meds about 10 in all. My body blew up like a balloon, I felt tired and the headaches still didn't go away. Finally, I was having difficulty staying awake. No one seem to no what to do for me. It was terrible. I got a referral to see Dr. Denton Cooley in Houston. Off we went to Houston, the first thing he did was an angiagram. I was just a bit terrified, but I went through with it. Thank Heavens I did and I found him. He came to my room after the test smiling and told me and my husband that I was not annotomically correct. The results were that I don't have the arteries they said were blocked. They don't exist in my head. I was taken off all those awful meds. Came home and now still have the headaches but can live with them by taking Imitrex and Zomig. These drugs make me feel tired, but I don't suffer with the pain of the headache. I have a life and a new business now thanks to Dr. Cooley.
Marilyn Green <marilyngreen@mac.com>
San Angelo, Tx USA
Monday, October 15, 2001 at 18:54:03 (EDT)

Hello. I am 19 years old and got cluster headaches this summer. Before the headaches started, I was going through some very emotional issues. I wasn't myself for a long time. During this time I was doing a lot of thinking about life and other technical issues. I believe the constant thinking and stress brought on my headaches. I get them now when I am stressed or thinking hard. I experience shooting pains all over my head. I was scared when they first occured, and went to the doctor. I was then diagnosed. So, I feel these headaches, for me at least, have to do with my mind and the way I think. Thats when they started ,anyway. I find, now that I am in better mental shape, that I can control them by staying stress free and not thinking and dwelling on things as much. I wish it was that easy for everyone.
Luanne <luanneporter1@hotmail.com>
Nashville, TN USA
Monday, October 15, 2001 at 16:59:16 (EDT)

cluster headaches
beth patton <bap517@aol.com>
mechanicsburg, il 62845 USA
Monday, October 15, 2001 at 16:21:24 (EDT)

Greeting from the soon-to-be great white north. I really enjoyed your site. I was amazed by how much the headaches are like some of the symptoms related to aspertame sensitivity. (say hi to sailpappy....it was great talking to you)
urs <u.m.gibbs@home.com>
Sault Ste. Marie, Ontario Canada
Monday, October 15, 2001 at 02:23:44 (EDT)

Hi all! Incase anybody read my entry I somehow spelled my name wrong. So just to clarify it's with an "e" not "y". Maybe these CH's have messed with my head more than I realized!!!!
Glenda J. <SecretZJ@aol.com>
Co. USA
Monday, October 15, 2001 at 02:11:56 (EDT)

Hi all & congrats 2 the site creator.im 42 & have suffered my evil friends visits 4 22 yrs now.I have not had an attack since march 2000.Dont worry im not getting 2 carried away.So the onset was around 1979-80.What a great 21st present! oh well could have got worse like being burried alive ah! I am one of the blessed- once a year- 2 - 16 wk block-1 - 20 attacks per day.Won't go into the meds accept 2 say the only effective one was that lovely sweet baby Sumatriptan succinate.(IMIGRAN 4 short)As u all know the pain associated with cluster can be considerable(sound like a man of medicine that has no idea ah!)Try this one medicine man - The pain could be sufficient for one to examine deliberate acts of self mutilation as a means of distraction. yep some docs are cool i know. I just cant forget the one that said 2 aspro dissolved in warm water could be the go. That was after i asked 4 an IV shot of Miss Emma! Didn't see him again! I eventually gave in -nothing really worked. The time rolls on and on and u just handle it with the love and understanding of your partener ,friends and children being the medicine at the top of the list . Look at the bright side my fellow c-heads -it can be character building! Hang in there headbangers!
John <summo_aus@yahoo.com.au.>
brisbane, QLD AUSTRALIA
Monday, October 15, 2001 at 01:25:56 (EDT)

oxygen truly works...tim
tim <cnotes00@aol.com>
brooklyn, ny USA
Sunday, October 14, 2001 at 13:52:54 (EDT)

Just wanted to say...have done study on "Alcohol"...believe it IS "IN FACT" in my opinion, a "CAUSE" of "Clusters". As far as "research" is concerned, I believe emphisis should be applied to THAT aspect, and would be glad to expound upon MY discoveries to assist the effort, thus far, in "at least" examining the posibilities of eliminating, or, bringing under control, Clusters. "Z".
David Zug <ddzug@aol.com>
st. petersburg, fl USA
Saturday, October 13, 2001 at 21:33:07 (EDT)

It's so nice to see others that are experiencing the same pain as I am. Have been in remission for 20 months until the other night. My doctor was out of town and it took me two days to get oxygen. My only relief besides ice. I describe my pain as getting hit with baseball bat in the cheekbone. My friends just don't understand. They think it like a migrane. The next morning after the attacks I also feel like I have a vice grip on my temple and want to know if other feed that way too.
RandiHammer <Mymunchki@yahoo.com>
Sunrise, FL USA
Saturday, October 13, 2001 at 19:45:42 (EDT)

I live with someone that suffers from cluster headaches and I need help.I try to help him but he becomes a total different person.I try to understand, as I suffer from migrains.However it is ripping our relationship apart.
Debbie <debrose69@excite.com>
S.Lake Tahoe, Ca USA
Saturday, October 13, 2001 at 18:30:56 (EDT)

I'm a 24 white female I've been suffuring from CH's since approximately 9 yrs. old. For whatever reason, no doctor has picked up that I had CH's, until a couple months ago. They've alays told me I had just migraines! So naturally when I would talk to another migraine sufforer I couldn't understand why their pain sounds so different, or why they could just lay still to make their's go away. It just didn't make sense, I alays thought that maybe I was just a baby about pain. Others thought that I screamed, cried, hit my head etc. just to get attention. People made me feel guilty. I get mine every year from April-August, 6 times daily. The pain gets so severe that I would beg my mother to kill me! Once I actually held a gun to my head and I thank God everyday that at that moment my 3 yr. old daughter called for me from her room, and I realized that no matter how bad it gets you do need to live for others. Finally I found a doctor who reconized my headaches, it's still early but I think meds. he gave me will help some.
Glynda J. <secretzj@aol.com>
Co USA
Saturday, October 13, 2001 at 17:39:23 (EDT)

44 year old WM, diagnosed in 1974, comming our of a 6 year CH free period. Absolutely horrified that they have returned.
Reagan Nelson <treagan@thegrid.net>
Long Beach, CA USA
Saturday, October 13, 2001 at 16:07:18 (EDT)

i feel at the end of my tether they have tried everything,my clusters are periodic but make me feel so down ,the steriods have such awful side effects ,both my personality especially dexamethasone , the predisolone has now cause AVN in boths hips - avascular necrosis of both femerol heads what else is there
kaye van der Sloot <kaye.vanderSloot@gatewayuk.net>
surrey, uk USA
Saturday, October 13, 2001 at 01:04:47 (EDT)

I'm a 31 year old female who has had cluster headaches since age 19 when I started on birth control pills. I spent years trying to make others understand that this wasn't just a "headache". I'm in the middle of a cluster now, and pray that they will end soon, hoping I will make it without going completely insane. I have 3 small children at home, and they and my understanding spouse are the main reason I fight to keep going. I've been taking Imitrex nasal spray and using O2, with good relief. Get this though, my Dr. advises "no more than 4 Imitrex per week" - that won't fly when I'm having 2-3 headaches per day! Thank God for this website - I read what others say, and it's like reading my own thoughts! Has anyone heard of using light (the kind used for seasonal affective disorder patients) to treat their headaches? Someone suggested this.
Kristin Goodroad <goodroad1@msn.com>
sioux falls, sd USA
Friday, October 12, 2001 at 20:31:38 (EDT)

I am 49 years old and have had clusters since I was 15.I self medicated for alond time.Only one doctor believed me at age 21,them he moved away.I could not find a doctor to beleive me.The last one I went to refered to my headaches as chronic hemi-cranial pain.Ya no kidding I have pain on one side of my head.Then I found the doctor that I see now.She believes me and is working with me to try and rid me of these horrific headaches.The migraines are just about gone. Only one every once in a while.The clusters have improved as to the duration of pain.The intensity is still the same and the length of episodes are still about three months. Atleast the clusters come only once every 2-3 days and that is an improvement. But best of all she believes me.I take fiorinal mostly.I use vicodin for the reat stubborn clusters.I am fortunate that these drugs don't make me tired they keep me awake.However I wish I never had to take anothe pill as long as I live thats what I want. Maybe some day that will happen.
Carol Kiser <doowop52@home.com>
Jeannette, PA USA
Friday, October 12, 2001 at 17:45:12 (EDT)

This is for my dad. He used to be a Cluster sufferer until today. He use to have a very regular schedule of attacks. He'd have them for about 4 months in the fall-winter mostly in the afternoons and evenings. I can remember when I was younger all sorts of meds he took that made him sleepy, grouchy and even a few that he'd just start giggling. I have seen this man pound his head on the floor or a wall to try and rid himself of any pain. My mom and I even drove 45 miles to the ER to give him that wonderful shot. The shot would work for a while if he didn't kick the back door of the car off. Eventually his doctor put him on oxygen which was about the best I have seen work. He just carried a tank with him in the pickup and when he felt the twinge in his right eye, he'd take some oxygen and be fine. The last time I saw him have one was in 1992. Today he had one. I was hoping since it had been 9 years since his last one that it was all over. Thank you for this cite and I hope that if anyone knows what we do now--that would be great.
Tonya <tonya@bbc.net>
Hemingford, NE USA
Friday, October 12, 2001 at 16:59:05 (EDT)

Hi everyone! I am a 32 year old female, I started geting CH's when I was 19. The trigger? Birth Control Pills! And of course, once CH's start, you can never get rid of them. Everyone I knew felt sorry for me when I would have an attack when I was in college, but didn't know what to do to help. I didn't either. Eventually ended up in the Army, where I had almost 4 blissful years of no attacks (something about daily strenuous physical activity - or so my doctor thought). Then after having my child, a doctor decided to try BC pills again. The headaches started within 2 months, almost every day for the next 3 months. Went off the pills, and the cycle went down to 2 times per year, 3 weeks or so at a time. I always seem to get them in the early to mid afternoon, always behind my right eye. Have trouble seeing out of that eye because my vision will get blurry - probably from me trying to make the pain go away! Not much helps except constant pressure, so it's common to see me walking the halls with my fist balled up in my eye. About 3 months ago started on BC pills again (you'd think I would know better by now?) and started with a new episode 2 weeks ago. Spent 6 hours one afternoon curled up on the floor crying. Still not better, although I hope to be able to control it soon. Never taking BC pills again! I wonder if anyone else has noticed this trigger for their headaches? Hopefully will go back down to 2x a year once I'm off them, I can at least live normally then between the episodes. Thanks for this website - it helps!
Amy <amsulli@juno.com>
Chaska, MN USA
Friday, October 12, 2001 at 16:24:52 (EDT)

I am writing this note on behalf of my brother, Kirk McInnes, who is a cluster headache sufferer. Kirk has been experiencing these headaches since 1993 (I think). He is currently 40 (or will be November 26) and is a smoker. He tried quitting smoking, and it didn't help. He has had nerve endings in his brain trimmed during some trigeminal neuralgia procedure. That did nothing. He has had a deviated septum repaired. He has had allergy testing. He has gone the chiropractor route, and so on. He gets some relief when on prednisone, but I don't know the dosage. He also injects himself (more than medically recommended, but when the alternative is to go ahead and kill yourself to get rid of the headache, who cares, right?) I love my brother dearly, and have even asked God to let me share some of the pain, just to give him a break. I don't live in the same city, and I don't think he has his own email address. His wife does though. If there is wisdom to pass on, I will gladly do it.
Dawn Kennedy <dawn.kennedy@lakesuperiorpower.on.ca>
Sault Ste. Marie, ON Canada
Friday, October 12, 2001 at 11:02:48 (EDT)

I was afraid i was going to die,now I feel l'm afraid sometimes I wont......suffer of C.H. for 10 years now I am 30 years old my last cycle was a year ago almost thoght they were gone,but the bastards have returned to let me know how much I love them...tried all drugs ....just the ones that put me on cloud nine work ...being doped up is no way to live but its better then sitting in a dark room making deals with the devil to take away the pain that God gave me.................
chris swiston <toelover@aol.com>
ithaca, ny USA
Friday, October 12, 2001 at 11:00:37 (EDT)

Hello to all!! I am SO grateful that I've found this site! I am a 40 year old male. I have suffered from this horrible monster, that not until 15 years ago, had a name for me They began when I was 16/17, and have continued at 12 month intervals for 6-8 weeks. I am currently in the fifth week of a typical cycle. I had had a two year eight month reprieve, that I believe may be connected to a year in which I was on a anti-depressant (Paxil). I will be going to a doctor for the first time in fifteen years to attempt to see what or what not the medical establishment can do for me. It is a comfort to me that there is a place to connect with others that know excactly what I'm going through. So, tonight the monster will return, at 2 am as is usual. Tomorrow, hopefully, they can start me on "something" that can help me through. Best wishes to my fellow sufferers! James to get some help. The past years I had not had the support of health care, so, any in-depth examinations, such as, MRI ect., was financially out of the question for me. So,
James Sandwick <JLSwick@qwest.net>
Minneapolis, MN USA
Thursday, October 11, 2001 at 23:10:48 (EDT)

I've pretty much suffered from headaches since I was a child. I've had every test imaginable to rule out "the bad stuff"...MRI, Cat Scan, EEG, etc. Since adulthood, I called my headaches migraines. Now, though, I beginning to think I may have Clusters. What makes me wonder though, is that I am a woman, and clusters typically happen to men. Although all my headache characteristics suggest cluster. They are: one sided (right), watery eye, stuffed nostril, stabbing, excruciating pain, awakened in the middle of the night, can't sit still when in pain, try to lay down and be still, but even when laying down, I'm writhing in pain and usually can't be still. It seems the med's I've tried, don't work for very long. I have tried Motrin (taking so much that recently, had to be taken off of it because doctors think it has started to effect my bone marrows ability to produce white blood cells). I've also tried Midrin, Fiorinal, Fioricet, Soma Compound w/Codeine. I'm currently on the Fioricet and Soma. But lately, that doesn't seem to be doing much. The pain subsides for a while, but the need to take another is well before the prescribed time line (1 every 4-6 hours). I'm really looking forward to connecting to some other folks experiencing the same feelings. Specifically, it would be nice to hear from some other women who, perhaps, are suffering from clusters.
Suzanne Gorman <sgorman4303@aol.com>
USA
Thursday, October 11, 2001 at 14:28:01 (EDT)

hi...i found this site about 2yrs ago. i've had ch since late teens early twenties. i'm now 41. i've tries imetrex, pills and nasal spray. they worked but i didn't like the side effects. this is the 1st yr i haven't had any. I've been on zoloft since mid-january for depression. i started on 50mg and have been upped to 100mg. i had a couple of shadows in may but the cycle never started. the only thing i've done different has been the zoloft. has anyone heard of a link between ch and depression and if i dicontinue tha zoloft will they come back with a vengence?
Penny Mace <pmace@epix.net>
Hegins, PA USA
Thursday, October 11, 2001 at 06:42:12 (EDT)

Howdy All! Love the site! It's so cool not to have to use my "standard" descriptions of clusters to non-sufferers... "take a migraine and multiply the pain by, oh, say, INFINITY! Or, imagine a red hot ice pick stuck in your left temple for 3 hours and every couple of minutes, someone comes by and slaps it! I've had clusters since age 16/17, but wasn't diagnosed until I was about 25. I started of with Prednisone (I've got a mild c.h. right now and not too worried about spelling!) That didn't do too much and from there I progressed to Ergotomine, TYlenol 3, Ergotomine and Percocet. The last two were my staples until I moved to another city and my new doctor wouldn't prescribe Percocet; he gave me Vicadin instead. At first I was ticked off, but when I took two and my c.h. actually went away DURING an attack, I was amazed! All Perocet did was make me beyond sleepy and reduce the c.h. to a dull throb. Since then, Vicadin's become my new "miracle" drug! It's the only thing I can take that will actually stop an attack before and during, but it has it's downside--I can't take it at work. Lately, I've found that the migraine-formula ibruprofen gel caps work, like Advil Migraine, if taken right at the onset. The tablet forms, like Exedrin, do nothing for me. I'm now 38 and pretty much run the gambit of treatments--inhaling oxygen in the E.R. at 3am, Midrin, Naproxen, hot showers/compresses, etc. But by far, the worst thing I've taken is Imitrex! After getting some relief 20 minutes after taking it, I got a rebound c.h. about an hour later, (while driving on the freeway!), that lasted 10 hours! The pain was actually WORSE than waking up with a c.h., and we know how bad that can be! It was unbelievable! I've always been told that I'd outgrow them and I have to an extent. My last cycle was about a year ago, last about a week and I've found my triggers are stress and sometimes beer! Can't do anything about the stress sometimes, but I definitely drink beer with caution. When I think I'm handling life ok, all it takes is a c.h. go-round to tell me I'm not, which makes me step back and look at what's going on. So all you c.h. sufferers out there know you're not alone! There are others who've woken to the blinding light and brick thrown at your head at 2 am, walked the halls, cried, bargained with GOD and microwaved a washcloth so hot that the burning towel actually felt better than the headache! For me, Vicadin and recently, a hot cup of coffee have gotten me through the pain. I hope that someday I'll "grow-up" and put clusters behind me for good! Take care
Michael <apocxxxxx@yahoo.com>
Renton, WA USA
Thursday, October 11, 2001 at 06:34:42 (EDT)

Hi all...My husband suffers from CH's he was diagnosed in 1992...He was free of them for 1 yr and know there back...They are the worst ever...I feel for anyone and everyone who has to put up with this every day, year, hour etc...I'm so glad to have found this site...I wish you all the best during this difficult time of CH's...What a nightmare...
Tami <tamit32@hotmail.com>
Sultan, wa USA
Wednesday, October 10, 2001 at 20:11:19 (EDT)

I'm Steve, I'm 40 in November 2001. Its October and I have just been diagnosed with Cluster Headaches. I've never had anything like this before its all new to me. I've had a couple of stressful years and within weeks after having to change jobs (double figures over 4 years now) to one I dont like having had to leave a company where I was thriving due to low workload I started having pains behind my right eye. After two weeks or so the pains became unbearable, waking me up in agony on a Sunday morning and I was rushed to hospital where they put me on an oxygen mask after noticing dilation of my right eye and a droopy eyelid. Maybe it was a coincidence but the pain went away. After a week in hospital and some very unpleasant tests it was decided I have cluster headaches and I'm now on Verapamil. The pain hasn't gone away yet, but it is now very mild, but then I am on codine to get through the night. my worst pain is around 5-7 am in the morning and early afternoon and frankly after reading what I've read here I'm hoping that the doctors got it wrong. I dont ever want my little girl to see me writhing on the bathroom floor, clutching my eye and sobbing so loudly ever again.
Steve Bennett <bennettste@aol.com>
Stockport, Greater Manchester, United Kingdom
Wednesday, October 10, 2001 at 18:33:34 (EDT)

Hi my name's Dave (from New Zealand)...I'm 42 & have had cluster headaches from the age of 17, from then until 22 years I got them about 2-3 times a week ...at 22 they went apart from the odd one here & there (2-3 times per month). Then I got them back with a vengence at 29 years and got them on a regular basis ...4-6 times each and every week until I was 39 ...so I lived through 10 years of absolute hell. Thank god I've been free of them for nearly three years now, well when I say free I've had maybe 7 or 8 over that period which for me is awesome! Over my ten nightmare years I usually ended up at the doctors or sometimes the hospital and I'd have shots of pethidine & Maxalon or morphine & Maxalon....for quite a while I carried pethidine tablets with me where ever I went because I was getting headaches almost every hour of every day for weeks ....a couple of times I loaded my rifle and got myself ready to put an end to this madness ...the only thing that stopped me was that I couldn't see or walk to find my "final painkiller" At the moment I thank God for every day I have without this curse from hell ! Yep I tried all the preventetives probably like alot of you have, doctor after doctor, neurology hospital wards...test after test....specialist's etc but nothing really seemed to work ....then like they come ...they go ...just like that. Well I wish all of you the very best from the bottom of my heart ....I wouldn't wish clusters on my worst enemy and that's a fact! God Bless Dave Russell
Dave Russell <davo41@hotmail.com>
Whangarei, n/a New Zealand
Tuesday, October 09, 2001 at 04:12:12 (EDT)

I am a 47 yr. old male. First diagnosed with cluster in 1987. My treatments went as followes: oxygen, lithuim carbonate, fiorinol, stadol, imitrex pill, imitrex nasal, imitrex injection. The only one that works with any consistency is the injection. Of course, my insurance provider thinks I should only have 6 doses per month. My period usually lasts about three weeks and returns every 12 -24 months. Thank God I found this site. If feel validated and supported. Now, if someone would only find the cause and/or cure!
Larry <kupfy@aol>
Hicksville, NY USA
Monday, October 08, 2001 at 21:03:45 (EDT)

I suffere with cluster headache all day and every day I am a 45 year male.I have 3 to 5 headache a day. My list of meds has been depakota, lithium, lidocaine, dhe shots, imitrex nasal spray, oxycodone,and zomig. what can i do next, please respond.
Arthur Maull <gjmaull>
northport, ft USA
Monday, October 08, 2001 at 18:28:48 (EDT)

I have been a sufferer of headaches for about 15 years. They just recently got worse (in the last year) where I get cluster headaches between 5 to 7 a month along with the regular headache every 3 days. They usually hurt my right side of my face and last all day long, where I get blurred vision. I have taken Zomig, which only helped the minor ones and now I take fiorinal with codeine, which helps me for the most part.
Allison Leigh <alandrade@regententertainment.com>
Santa Monica, CA USA
Monday, October 08, 2001 at 18:10:35 (EDT)

My mom died when I was 7 from an anerusym. Before that she had headaches and migraines all the time! I am 16, and I get them all the time. I actually first noticed it when I was 14. People say it runs in my family but I am still scared at times and I really think that is how I am going to end up dying. When I go to the doctor all he say is stress and emotional problems cause my physical problems. I know I feel "spaced out" all the time and like I am not really here and I noticed also when I get my headaches I get dizzy sometimes. I always have a tired feeling on me but I sleep alot. Someone please help if you can. Also any one can email me if you would like. Thank you, Leslie
Leslie Rossi <leslie_rossi35@hotmail.com>
Inman, SC USA
Monday, October 08, 2001 at 11:04:49 (EDT)

I am 59 years of age and started having cluster headaches when I was 23 years of age - a month after my son died when I was away at sea in the Merchant Navy - and I think that is quite relevent. I suffered almost continuously for perhaps fifteen years but now the attacks come only at intervals of 2-3 years, which makes me one of the luckier ones, and only after periods of stress. I had assumed the attacks were migraine and only heard of CH's about two years ago, on a radio programme, but now I am in no doubt what I am suffering from. I had been naive enough to think that I had stopped suffering but they returned last week. I only get the pains when I relax, and frequently wake up during the night with an attack, often several times during the night. Sleeping tablets can help as it is important to get a decent nights sleep, but on occasions mean that the attack has really got a hold before it wakes me up. I used to overdose on pain killers (mainly paracetemol) and found that taking them with hot tea made them act quicker but by chance I found that the hot tea on its own can now give great relief - and the paracetemol used to make me feel quite ill when I took too many. In fact I can get up in the night, have a hot cup of tea and be back in bed within 20 minutes - waiting for the next attack! A really bad attack, of course, doesn't seem to diminish no matter what I try, but I have only seriously considered suicide 2 or 3 times over the past 30-odd years, which makes me luckier than some. Try the tea. It must be the tanin (coffee has an adverse affect) and good luck. Isn't it difficult persuading doctors that CH's can be so bad that a normal sane person could even contemplate killing ones's self to alleviate the pain? Doctors please take note.
Clive Knott <cliveknott@btinternet.com>
Nr Crewkerne, Somerset, England
Monday, October 08, 2001 at 09:06:06 (EDT)

I've been a Cluster non-addict for the last 16 Years. The headaches disappeared for the last 2 years and seemed to have re-appeared 2 weeks ago. I know I still have 5 weeks left. The doctors are trying but don't seem to have a cure at hand. Thanx for a great site and while I'm praying for myself, I'll pray for you all as well.
Louis Venter <venterl@vodacom.co.za>
Port Elizabeth, EC South Africa
Monday, October 08, 2001 at 05:33:57 (EDT)

Im 16 years old, and I know now that im not the only one out there with CH. Im so happy to hear that! I feel the pain everyone is in and I know it's not that fun. I really dont get to do ALL the things all the other teens are doing cause of the attacks. I dont take any meds for it. maybe tynol, but thats about it! I can't go to bed sometimes cause the pain is really deep. Im glad Im not the only one! thank you to this Web site ive found!
Cassandra <sweet_balla15@hotmail.com>
On Canada
Sunday, October 07, 2001 at 21:14:32 (EDT)

Greetings, fellow sufferers, from across the pond! I started getting cluster headaches in my mid twenties (43 now)and at first they were incorrectly diagnosed as sinus trouble. I tend to get an attack every 14-18 months, each one lasting about 1-1.30 mins and these happen 3 or 4 times a day. The worst time is early morning as I usually wake up with it in full swing. I find that if I am quick enough I can stop it with Ibuprofen, providing I take two as soon as the 'tingle' starts. The worst thing is that the tablets can take up to an hour to kick in, defeating the object. I've recently been prescribed some quick melting 'wafers' called Maxalt (10 mg of Rizatriptan) which gets into the system really quickly and does stop the pain after about 15 minutes . However this was only attacking the pain and not the root of the problem. I've just received some beta-blockers and have only had 1 attack in the last 3 days (started them 3 days ago), so fingers crossed. The triggers vary for me - stress is a key one, and I guess the 'world situation' at the moment does not help along the appalling images of the WTC abomination. One interesting thing though is that certain scents/smells can trigger it off. Cigarette smoke is one, acrid bonfire smoke another - also certain perfumes and scents - this one was started by smelling lavender oil (put on the pillow to aid sleep....NOT!) Alcohol is also a risky one for me, so I tend to avoid it. I have suspicions about chocolate too, and am keeping off that - so at least the waist-line is benefitting! It has been a great relief to discover this site and find there are loads of other sufferers out there - I even laughed at some of the terminology (the 'dance' is particularly true!). Exercise is a good one for at least distracting the mind - next time I get one I'm just going to go out and RUN my little old socks off - regardless of what time it is! One other trick I have found sometimes works is one that a faith healer friend tried on me - take the finger tips of each hand to the centre of the forehead and gently wipe them to their relative sides, then flick the finger tips away, as though you are discarding the 'badness'. Sounds a bit whacky perhaps but at least it feels like you are throwing the 'devil' out! To all my fellow sufferers I wish you good health, restful days and sleepful nights! Best wishes, Steve.
Steven Adby <steven.adby@ntlworld.com>
Nottingham, England
Sunday, October 07, 2001 at 13:43:48 (EDT)

First of all I would like to thank who ever is responsible for creating this site. Although it is conforting to be part of this "family" I do hope to someday be outcasted. I had my first cluster headache when I was about 10 years old when my sister tortured me for what seemed hours by singing the "Popeye the Sailor Man" song over and over again. I did not know what it was at the time but it sure did hurt more than a headache. My next episodes were in High school which seemed to always be in Typing class or History. They have be pretty regular since. I am now 35 years old. I have been through the gambit of treatments and have had EEG's and MRI's. Drug treatment were things such as steroids, Imitrex, Codene, etc. My cycles occur every 6 months or 1 year. I am in a cycle now am am somewhat encouraged because it has been 1 1/2 years since my last one. (I will tell you why I am ecouraged in a minute) On your KIP scale I range somewhere from 8 to 10. Suicide has crossed my mind, but at the time I figured I was probably going to die from the pain. (drama) I have banged my head but do not anymore, no matter how painful. I have learned that banging only gives you embarrassing bruises. I think about the ER but I know that they cannot do anything but annoy me. I am encouraged by this latest cycle because I think that I have made a few discoveries that at least work to some degree for me. My cycle behaves a lot like a bell curve where the frequency and intensity build to a peak then peter off until I do not have them anymore. The duration of my cycle is usually about 4 to 6 weeks. I have found that if I start running in place or go for a jog for about 20 min. to 1/2 hour right when they begin or what you all call shadows, I can one, stop that peticular headache all together and two, disrupt the bell curve cycle. I have also noticed that this shortens the lenth of the cycle as well. Keep in mind that I also stay away from any triggers during the cycle and drink more water than I usually do as well. Please also keep in mind that I am fairly fit. I say this for those who might want to try this who may not be fit. I am not a doctor but I worry that you may cause other problems. Enough disclaimer. I am also encourage by the longer span of time from my last cycle. This part is not as conclusive, but what I have done as a preventative experiment is drastically reduce my sugar intake. My diet has not always been so good and it has included a lot of sugary stuff such as coke, cookies, syrup and Ice cream. (I have never been able to eliminate Ice Cream.(God I hope I do not discover that that is the source of my headaches!) Anyway, as well as reducing my luv handles, I believe that it has kept the headaches away for a longer period of time. What is also convincing is that weeks prior to this current cycle I was on a sugar binge..and what do you know..Headache! I hope that on this, my first posting, that I haven't bored anyone. I really wanted to tell others this in case it might help! I lokk foreward to reading more about your experiences.
Andy Faust <fausta@frontiernet.net>
Rochester, NY USA
Saturday, October 06, 2001 at 20:28:16 (EDT)

Hi all. I am the wife of a Cluster headache sufferer. He first started getting them 27 years ago and had never been able to find much relief. Year after year, for 6-8 weeks at a time he'd get his headaches several times a day. Finally we found a knowledgeable neurologist who'd learned a few things from a headache conference in Philadelphia. This is what he refers to as a "cocktail". My husband has used this rememdy each year and for the third time he is cured again!!!! Here's the recipe you want to speak to your physician about: Ergomar sl 4mg Prednisone 5 mg Valium 5 mg You take each pill 3X a day for 7 days Then take each pill 2X a day for 3 days Then take each pill 1X a day for 3 days Discontinue. He has been COMPLETELY cluster-free from the very first day and the clusters don't return for another year or two. This year he was given Cafergot instead of the ergomar sl. Not sure why, but it has worked just as well. Good luck!! 3 times/day x 7 days 2 times/day x 3 days 1 time/day x 3 days discontinue
Cyndi <cydv1@aol.com>
Pomona, CA USA
Saturday, October 06, 2001 at 15:28:34 (EDT)

I can't believe I found people who are also going through what I feel. Till Dec.27th,1996 I could not tell you what a headache felt like. My daughter would get a headache once in awhile and I would tell her she was going to leave and not to act like a baby Boy, did I eat my words! I have never went for even a minute without being in pain all the time. I have tried every test, about every drug on the market and still have never had a minutes without pain. I run on a pain level at 7 all the time except when it goes to a 10, I go to the ER. We leave in a small town and on weekends we have doctors from out of town. They act like I'm a junky because it might be 2 months since my last shot of demorol. They also try to come up with new ideas, but my doctors have already tried everything. I have been to doctors in Evanston and Mayo clinic. Mayo finally gave up because nothing worked for me. I have felt so alone even though my family gives me full support. It' nice to hear other people feel like banging their head into a wall and not being able to sit still during a bad day. I thought I was going nuts. I no longer work due to my pain. It was so hard to put a smile on your face when you just pray your head will blow. I always was very outgoing, loved worked, and loved being with family and friends. The smile is gone and so is part of my life. I take each day at a time, and thankful that it's not something that will kill me, but there have been times that I wished it would. Thanks for just knowing there's someone else who's there with me.
G.Schultz <drsges@theramp.net>
Mendota, Il USA
Friday, October 05, 2001 at 13:36:44 (EDT)

Headache Relief Now Product: Sui-Shen-An Description: Sui-Shen-An A brownish oily liquid that is prepared from natural herbs on the basics of the theory of traditional Chinese medicine. Sui-Shen-An is a liniment that promotes health through AromaTherapy with no side or toxic effects. Sui-Shen-An is an HERBAL SUPPLEMENT. Indications: Sui-Shen-An produces soothing Headache Relief within seconds. Directions: Sui-Shen-An is applied to the temples and septum (wall-like cartilage between the nostrils) to experience headache relief within minutes. Apply the liniment as the discomfort occurs. There is no limit of time or frequency of an application. Warning: Pregnant woman should not use the Sui-Shen-An product. People with allergies should be cautious before using. (Apply to skin and if the skin becomes red, don’t use) These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure or prevent any disease. Awards:  The Gold Medal for Scientific Research Achievement at the first USA Symposium on Integration of Traditional Chinese & Western Medicines.  The Gold Medal for Traditional Chinese Medicine at the Sixth International Congress on Oriental Medicine in Los Angeles.  The Silver Medal at the 82nd Paris International Fair. General Information: The Sui-Shen-An product will be listed in the 2002 Physicians’ Desk reference (PDR). The Physicians’ Desk Reference (PDR) is the annual directory of ethical pharmaceutical, biological and diagnostic products. The directory comes out in December 2001 and is given free of charge to every Physician and Hospital Chief of Staff in the USA. Major Manufacturers, Brand and or Generic Names and Products are listed in the PDR. The Sui-Shen-An product will be included in the 2001 PDR and listed under “Headache Relief”. Product and Investor Information: Headache Relief Association (USA) Attn: Michael Travis Email: mtravis2001@aol.com
Sharon Travis <mtravis2000@aol.com>
Lake Forest, Il USA
Thursday, October 04, 2001 at 17:57:39 (EDT)

I have suffered with clusters for about 4 yrs. and am in the middle of a session right now. Prednisone had taken care of previous bouts but this time I had all the side effect and still had the headaches. I am so happy to know that I am not crazy and that others have this same problem. I am 62 yrs old and was told that mostly men suffer from these headaches and that narcotics will help. I am a recovering alcoholic and am not willing to take that risk. Imitrex is helping right now but it is not easy. It is nice to have a place to turn.
Judy Irish <jeadensirish>
Henryville, IN USA
Thursday, October 04, 2001 at 17:09:11 (EDT)

I've had clusters for 30 years,first every 2 years then every 3 years,now every 5 years.They didn't come this time,maybe I'm out growing them?My last series was the worst,the headaches towards the end of the series are always the worst....so maybe it is over now , we'll see?????
Jan S Nelson <jansheri2@aol.com>
Spokane, Wa USA
Thursday, October 04, 2001 at 02:26:18 (EDT)

Its really amazing to find so many other people who suffer like me but equally amazing to see the variety of medications available.......my doctor only ever suggests paracetomol and codiene combinations ! ........I would be quite happy to give myself injections but I didn't know they were available till I found this site. Like Sarah from London mine started when I was 18 and I had them at 3 to 6 monthly intervals but now go as long as 3 to 4 years. Just coming up to 4 years next January and I am beginning to get the odd warning feeling so I know that they are on the way..........it scares me so much because I know that once it starts I am in trouble. My husband is really helpful (although a cluster all but ruined our honeymoon) It affects my job as a nurse and people just don't believe it. I don't know anyone else who suffers with this so I suppose I have to understand that my colleagues just don't understand. It's so good to know that I will have support from this site when they do start
Trish Oliver <trisholiver@uk2.net>
Stoke-on Trent, UK
Wednesday, October 03, 2001 at 19:07:53 (EDT)

God bless all of you who suffer through these attacks, and especially DJ who created this site. I am male, 45, happy and healthy, except for CH which have hit me about every other year in the fall for about a month for the last 14 years. A few years ago, this site saved me from what I gather is a common experience of prolonged, costly and ineffective medical treatments. More importantly, it saved me from the fear that the headaches were part of some terminal illness, some cause commensurate with the pain. I am fascinated by the relief brought about by psychoactive substances reported by some of you. Ironically, I am more afraid of immitrex etc. than these drugs. I look forward to more reports. My only suggestion for the site would be to put a search engine in the posting archives so that it would be possible to more quickly find items of special interest. As my cycle of CH has just started up again after almost 2 years of inactivity, my gratitude for this site and compassion for all fellow sufferers has been awakened once again, a glimmer of good amidst the unspeakable pain. Thank you all for sharing your experiences. We are not alone !
Kit <kit@rcn.com>
New York, NY USA
Wednesday, October 03, 2001 at 14:30:38 (EDT)

Hi to you all, my name is Sarah and i am 35 years old and live in London. I have suffered with Cluster headaches since i was 18yrs old. You dont know how good it was to find this web site, at last i feel that some one out there understands the pain that i go through. When i first started getting the clusters i would get them every 3 - 6 months but as i have got older i can go up to 3yrs without any. I am currently in a cycle of them now, the first for 3yrs, and yesterday was a really bad day, i climbed the walls so many times,I screamed in pain and cried most of the day,longing for this demon to leave my head,and as a single mother with two active boys you can only imagine how difficult that is to cope with. I have been under a consultant since getting my headaches and he is brillant and i call him every day whilst in my cycle for advise on my medication. The saddest thing is, not many other doctors know about cluster headaches and i find this really fustrating as their look as me as if im mad, and when i call in to work to explain what is happening I always think they dont believe me. This site has given me hope, and it is good to know that other people out there understand the intense pain that i go through, however i have never meet anyone who suffers from cluster headaches, so please feel free to e-mail me. It would be so good to chat with other people who go through the same pain and understand how this affects our lives. Thanxs for reading and hope you responsed. Take care Sarah xXx
Sarah Maynard <pleasssure@hotmail.com>
London, England
Wednesday, October 03, 2001 at 13:54:31 (EDT)

Hi there. I can remember having these headachaches when I was 16 years old but never lasting more than a couple of days. This current one began 09/04/01. It is now 10/03/01. It subsided after 17 days but I had a rebound headache for 7 days then the "ax" resumed it's position in my left temple. I was going insane crying and smacking myself in the head so my husband took me back to the doctor and said, "Do something!" The Imitrex, Vicodin, Advil, etc. was just not giving me more than one hour of relief at a time plus my stomache was in full crisis mode due to all the meds. That day at the doctor's office a miracle occured! My doctor squirted 1cc of 1% lidocaine into my left nostril and had me roll onto my left side, then on my belly with my head hanging off the table, etc. til I had sufficiently allowed the lidocaine to go in every possible direction imaginable. My pain level went down to ZERO instantly. He then created a magic potion consisting of Ocean drops, Lidocaine and a steroid similar to Flonase in the Ocean drops bottle. I now squirt this wonder drug into my left nostril 3 times per day and remain relatively pain free. I still need to take the Imitrex at night, but at least I can now get a FULL night's sleep and my tummy has finally settled. (big sigh) (huge smile)
Shelly Orduno <shelly_bobelly@yahoo.com>
Granada Hills, CA USA
Wednesday, October 03, 2001 at 12:12:11 (EDT)

i have had migraines for five years on ana off they have cost me my job i currently on topamax and amilytriptline ialso get syptoms of mini stroke when i suffer these pains allways on left temple of head please respond thank you
joseph e counts <djjec2001@yahoo.com>
lindenwold, nj USA
Wednesday, October 03, 2001 at 11:28:21 (EDT)

I never heard of cluster headaches before last Sunday, but all that has changed. For the last few years I have been taking shamanic journeys with high doses of psilocybin about twice a year, and Sunday I had planned to take my fall journey with 5 grams of dried cubensis mushroom that had been found by a friend in a local field. Sunday morning I was reading a site about psilocybin mushrooms and saw cluster headaches mentioned as something that could possibly be treated medically by psilocybin mushrooms, so I did a yahoo search for cluster headaches and ended up here at clusterheadaches.com. Needless to say I was floored by the information I read, unbelieving that there are so many of you out there that are fighting this monster. I took the mushrooms around noon, and for those who arent familiar with psilocybin, 5 grams of young dried mushrooms is a very high dose. As the experience overcame me my thoughts centered around cluster headaches and I was pulled into the world of the 'clusterhead'. I cannot emphasize the empathy that psilocybin commands, but this was magnified intensely as I came into contact with a huge geometrical tiger who leapt at me and sank his teeth into my skull. I felt all the pain of a cluster headache instantly. I dont know how to describe this besides that I was utterly terrified and thought I was dying. I was clawing at my head and shaking it back and forth, at the same time overcome by the visions of the mushrooms and the information coming through clearly that I was meant to have this experience for a reason. The entire experience seemed to last forever, but in reality lasted about two minutes from onset to complete recovery. I cannot comprehend anyone suffering this pain for five minutes, much less five times a day for an hour at a time. I am a pathetic coward and I spent the next hour crying like a baby, even after the pain had left me. I am not sure why the gods felt it necessary for me to experience the pain of a cluster headache, but it has changed me forever. I feel the need to somehow offer support and spread the understanding of cluster headaches to the world. I dont know where to begin, but my thoughts for the last three days have barely swayed from the intensity of this pain and the compassion I feel for sufferers and their families. I need to know how I can help. I have felt for many years that the legal status of psilocybin mushrooms in America is blasphemy. There is a healing spirit in these mushrooms that is as old as this planet, a divine gift. It was made very clear to me sunday through this ancient knowledge that the mushrooms possess, that cluster headaches are triggered by kundalini energy attempting to release. Apparently the psilocybin can channel the kundalini into proper release. When the cluster headaches are overcome for good, incredible reward awaits, physically and spiritually. I know all of this sounds crazy, but this is information I was receiving during my experience and I need to share it. Psilocybin should be available to all those with cluster headaches, on a regular basis, to allow the proper direction of this awesome energy that is seeking to enlighten. I am willing to fight politically for this right in any way that I can. When kundalini is released improperly, all kinds of negative physical side effects will occur. The fact that yours are so intense and occuring in the head are a sign that you are far along on the path to this enlightenment. Do a search for 'kundalini release' and keep an open mind. And please contact me and let me know how I can help .
Emily <Lucidity@rawfoods.com>
Tallahassee, FL USA
Wednesday, October 03, 2001 at 11:04:25 (EDT)

Oh my god!!!! Someone please kill me I am a 33 year old female with 14 years of cluster under my belt...Im just wondering what we all did to deserve such hell. I am in mid cycle... and dying Hope everyone else is pain free... ya right huh
Carolyn <carolynandruss@home.com`>
Toronto, Canada
Wednesday, October 03, 2001 at 09:37:50 (EDT)

Hi, I've been experiencing what I think are cluster headaches. I have pain on my left side of my head, a knife-like shooting pain through the back of my left eye. This is been going on for a number of years, now, but it usually subsided. But for the past month, or so, I've also experienced blurred vision in my left eye. Since I had LASIK eye surgery about 18 months ago, my vision has been great. Having thought my left eye had regressed, I went to see my eye surgeon and told her about the blurriness and headaches to left side of my headache. She re-assured me that there was no regression, although my right eye is 20/20 and slightly better than the left. So, I went to see my family doctor and explained to him the situation. He did not use the term "cluster headache", but rather "vascular headache". From what I've read on this subject, my headaches seem to fit the profile of cluster. He prescribed Triptan(I believe) to keep 'chemicals' out of my brain. What chemicals was he referring to? I will be going in for a CT scan in three weeks to make sure everything is OK. Any comments, replies or suggestions would be appreciated. Thank you.
Franco Guido <fguido66@altavista.com>
Maple, ON CANADA
Wednesday, October 03, 2001 at 07:38:53 (EDT)

Please use this email instead. The one below is incorrect. Thanks David
David DeSpain <davesocal2001@aol.com>
San Diego, CA USA
Tuesday, October 02, 2001 at 15:42:25 (EDT)

I have suffered from cluster headaches for about three years, however since October of 2000 I've had chronic headaches. If anyone out there knows what more I can do please let me know--I feel like I'm at the end of my rope sometimes. I currently take 240mg of Verapamil to help control the episodes, but unfortunately have not had much luck lately with this. I also have tried oxygen without much relief. The only thing that seems to get rid of the headaches is Imitrix, but unfortunately as many of you know you can only get so much of this a month. I've now had 11 nights of hell in a row and have a call into my Neurologist to try and get some relief. What I really yearn for is something to help curb the attacks. I've had only about 2 to 3 weeks this whole year that I havn't had a headache. I don't smoke, drink, or eat any form of caffeine. If someone out there can help me with a solution, please let me know. A list of medications that haven't helped: Ibupropen 800 mg, Tylenol 3 w/codeine, Percaset, and a few other medicines along the way that haven't helped. Thanks for your time. David
David DeSpain <davesocal@aol.com>
San Diego, CA USA
Tuesday, October 02, 2001 at 14:57:12 (EDT)

Hello, I started getting a "pressure" headache around my right eye one month ago. Sometimes the sensation would transfer to my nose and tends to move alot. The only other symptons I would say is my eye does tear sometimes when I blow my nose. I am not sure about a diagnosis. Does it sound like a cluster headache? Looking for input.
Scryderman <Scryderman@yahoo.com>
Concord, CA USA
Tuesday, October 02, 2001 at 11:43:55 (EDT)

I LOVE THIS SITE VERY WELL,KEEP IT UP.I WILL ALSO LIKE YOU TO ADD MY GUESTBOOK TO YOUR SITE. www.theguestbook.com/egbook/357993.gbook
CLIPHINE NELSON ZINO <zino_cliphine@yahoo.com>
NEW Y, USA
Tuesday, October 02, 2001 at 06:38:43 (EDT)

I just started to have the headaches about 3 years ago.
John H. Smith <smithjohnh@earthlink.net>
Dayton, oh USA
Tuesday, October 02, 2001 at 04:09:09 (EDT)

It is Oct. l,2001. Fall is a very bad time,as well as spring. I sarted a cycle about a month ago. Went in for steroid injections,botox shots. Helped for awhile,but now I am sensitive to food and just the air. I have been getting small headaches daily. Take oxygen until I can't stand it anymore and then I take a Zomig. Zomig seems to help prevent further headaches that night. Am concidering "Gamma Knife" treatments, but I don't know if they work either. This has been going on since l990. I am 63 years old,male. My daily medicing consists of Bellergal,Lithium, calan,Zantac and oxygen.Smoke but do not drink.
William Fiorito <Itascaanni1>
Itasca, Il USA
Tuesday, October 02, 2001 at 01:38:39 (EDT)

This site is a real God sent! I'm 46 and have been suffering for 2yrs and 7 months I have been to 2MDS 2neurologist 1 heart doctor, I've had a mri ct mra ekg stress test echo gram, test after test! They first thought I had neuralgia I've been on all kinds of medication nothing seems to work! I have just started seeing a doctor at cleveland clinic, he has me on nadolol, I do not know if it is going to work or not I'm down to about 3 to five aday in stead of all day long 7 days aweek ! I'm just so tired, I just want my life back !! The doctor in cleveland did say that I have had mini strokes, has any one else had mini strokes, could strokes be due to the head pain? It's just great to know I'm not alone !! My prayers are with everyone who suffers with this demon!!!
Terry <MtnwolfT>
Springfield, OH USA
Monday, October 01, 2001 at 21:05:21 (EDT)

I just dont believe that theres more people that suffer like me. clusters MUST be torture from HELL!!!THANKS This web page is amasing.
poen <poen@icon.co.za>
cape town, w.p. south africa
Monday, October 01, 2001 at 17:09:24 (EDT)

hello. I have had headaches since 6/2001. don't know if they are "clusters" but having these 24 hours a day 7 days a week is not fun! This looks like a great place for support!
laura <cubfan1@chorus.net>
Madison, USA
Monday, October 01, 2001 at 15:57:32 (EDT)

Hi my name is Jennifer. I have been suffering from headaches for maybe a year now. I take asprins almost all the time and my friends are getting worried about me. One of them has said that she's going to buy an asprin kit. I wish I could get some relief from my headaches I get them almost every day. Please can someone help by sending me an e-mail with possible pain relivers(you know what I mean). Thank you for reading this. Jennifier Heideman
Jennifer Heideman <MagdaJennife@netscape.net>
Belleville, On CANADA
Monday, October 01, 2001 at 15:47:42 (EDT)

 

 

 


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