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 2000. Thank you for your continued active involvement in this site and keep those guestbook entries coming!


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Hi Folks! Happy to find another point of connection. I had my first CH in June of 1987 (at age 31). Haven't fallen into a bad cycle for about a year and I'm crossing my fingers that my early menopause has helped. I use Imitrex for the bad part of the cycle and excedrin and or Aspirin/codeine for the inbetween parts of the cycle. Best wishes to all!
Judi <>
Hingham, MA USA
Tuesday, October 31, 2000 at 21:09:21 (EST)

Hello to all. I believe that I have graduated from the hell camp of clusters. I have not had an attack for about 3 years. They started in 1964 and continued relentlessly until 1997. Every symptom described I have had. Tried conventional treatment, alternative treatment. Became dependent on Cafergot. Ultimately I determined that I had to quit using it, and found a doctor who would see me through the withdrawal. I was very afraid of becoming addicted to opiates, but managed to use heavy doses of Percodan for three weeks, with no problems. The cycle of clusters stopped and for a while Imitrex inhalers aborted a few attacks, along with the oxygen which was a standby at all times for many years. To any of you sufferers I would suggest that you review the medications you use, no matter if is no more that Excedrin, to be sure that they are not causing rebound headaches. I myself was in denial about the Cafergot for a long time, aided and abetted by a couple of doctors who should have known better. I do wish you all relief, and permanent relief. As a pharmacist I have talked to many headache sufferers. In my younger years I inwardly felt that most of them were malingerers, and only needed to get their heads on straight. When I became a sufferer, I often felt that I was being punished for my lack of caring.
George Geisler <>
boise, ID USA
Tuesday, October 31, 2000 at 01:13:57 (EST)

I am a new visitor to this site having been diagnosed a “Cluster Head” a week ago. I am from the UK and have been suffering for the last twenty years or so. I am very lucky in that I only have one or two cycles per year. You all know the pain it entails but from what I have read, most of you would love to be in my position. I had never heard of the condition until last week and felt enormous relief there are others suffering the same. I was convinced I had a brain tumour or some other deadly disease. Every one I have ever talked to seemed to have the same “headaches” and I thought I was the only one who was unable to cope with the pain. My Doctors have, until now, told me I have had migraines. All the medication I have been given has had no effect whatsoever. I think I sometimes get relief using 100mg Sumatripan, but I’m not sure if it is the medication or a not so severe attack. On the more severe ones it doesn’t help at all. I think I am nearing the end of my current cycle because I actually slept right through last night. I woke up with the familiar pain behind my left eye but it didn’t develop any further. (I thought the same four days ago but it resumed with a vengeance). My Doctor told me there is no known pain relief or cure, we just have to cope in our own ways. My personal way of coping with the pain is purely a mental one but it does help me. Every time I have an attack I am glad it is happening to me and not to my wife or two children. I would not like to be a position of watching someone I love in such pain and not to be able to do anything about it. I look at it as an invader into my family life and the hatred I feel towards it gives me strength to fight it each time it appears. Thanks to all you fellow sufferers who have made me feel not so alone.
Steve <>
Plymouth, UK
Monday, October 30, 2000 at 16:48:24 (EST)

I have posted a few times but never did this. I am 51 and have had clusters and migraines for over 33 years. I am on social security disability because of these and have been for over 5 years. I can't use many of the meds mentioned in the posts as i also have a bad heart. I can't use the imitrex and wish i could as my insurance company would pay for all i need. I have tryed the oxygen but it really doesn't do much good. I get the clusters at least 3 times a year and they last on the average 10 weeks each time. In between the clusters i have migraines, i really can't remember a week i haven't had 3 to 5 of those. I hope to help others in the group as i have been helped in the few short months i have found this site. MY goal is to find a medicine that works, i have a great dr and can get all the pain meds i need, i am looking to find something that really helps noi cover up the pain.
Monday, October 30, 2000 at 13:56:28 (EST)

I am 48 and had clusters for 8 years. I used to think I had Monday night football disease. Then we found out drinking beer invited Mr Cluster ( who I wish was not invited) I had not been able to get Mr Cluster to pack up and leave ever since. I have oxygen, imitrex (when I can afford it) and have tried B2 riboflavin, Magnesium, Omega fish oil, cold packs, Sunlight, Capsaicin up my nose ( thats fun like breathing in a jar of hot pepper) paxil, verapramil ( causes me an attack) sansert- works pretty well but you can only take it for 6 months without causing a serious internal fibrosis. Whats next? who knows I will try anything. I am starting to read everyones ideas and I think as long as we don't quit thinking we will overcome Mr Cluster and send his ass home for good.
Bernie <>
Greeley, CoI USA
Monday, October 30, 2000 at 13:10:27 (EST)

i was just diagnosed with CH a couple of weeks ago. i have also suffered from migraines most of my life, but CH are worse.i discoverd this site while hunting for info to reassure me that my pain and agony is real, not just "all in my head"i actually cried when i read others stories, it sounds just like me, and now i know i'm not alone(sorry that anyone else has to suffer like this though!) thanks to each and everyone of you that are out there, my prayers are with you all!!!!
patricia <>
knoxville, tn USA
Monday, October 30, 2000 at 12:39:10 (EST)

Looking for answers I started haveing these headaches about three weeks ago. The pain I am haveing is located in the back side of my head. I have had 4 or 5 major headaches that felt like someone was sticking me with a knife others average about 4 to 5 minor per day taking only one or two Aleve. I can feel my every heart beat,the louder the heart beat are the worst the pain. the only thing that works is to take 2 Aleve plus 2TravisD at one time then it nomarly take about 15 minutes to go away
bill parker <billp>
mesquite, TX USA
Monday, October 30, 2000 at 12:35:32 (EST)

Hi, I recently starting getting the ch all over again, the last time was 3 years ago, the lasted about 1-2 months and 1-2 bouts a day, A doctor at a local hospital told me about the ch and that's when I knew what I had. I just got on Verapamil 240mg, has anyone else used this drug? and if so has it worked? I would appreciate any feedback concerning ch's. Any type of help is also available. Thanks, Sal
Sal <>
Montreal, Qc Canada
Monday, October 30, 2000 at 10:09:06 (EST)

Good Morning, This is my first time corresponding with those who suffer from CH. I've had them since I was 16 and I just turned 50. So I have quite a history of CH. Tried it all, been told everything,will try anything. My schedule calls for an attack this fall but I've been taking Gingko Baloba religiously and so far my sessions have been very mild to none existent. Thanx for letting me express myself.
greep <>
willingboro, nj USA
Monday, October 30, 2000 at 10:07:10 (EST)

i have been having cluster headaches since i was 20 and am now 35. i went to many a doctor who told me i had a disease in the arteries in my head to you need surgury on your septum to don't eat fish your allergic. it wasn't until years later i went to a specialist who told me i had cronic cluster headaches. he gave me calan and wygrain. this stoped the headaches for a while but made me feel strange so i stoped taking it. i would have a ch every day around the same time sometimes several in a day every so often i would go a week to three without a ch. then i had surgery on an infection i got on my ear and for some reason they went away for three years. well they came back but not as frequent. i went back to the doctor and he gave me imatrex.then they went away again for almost a year before i ever tried the injections. i did however use the nose spray a couple times but wasn't sure if it worked or the ch was just a short one. now they are back and i was pleased to see this site. i have been using the injections and the seem to work well but i have only used it twice. well thats my story. thanks.
Mitch <>
san marcos, tx USA
Sunday, October 29, 2000 at 23:48:20 (EST)

have tried & would try about anything to get rid of the clusters!!!
jodette <>
cape coral, fl USA
Sunday, October 29, 2000 at 22:39:30 (EST)

I think the personal descriptions detailed on this site pretty much sum up what I have been going through for the past seven years. Why isn't there a cure yet and why isn't more money being invested into finding it?
Aaron Phillips <>
Independence, MO USA
Sunday, October 29, 2000 at 17:36:57 (EST)

i am on verapamil 240mg and am suffering from continuous headaches. plz tell me about some other medicine.
javaid qaisar <>
Peshawar, N.W.F.P Pakistan
Sunday, October 29, 2000 at 11:39:50 (EST)

My name is Roger, I'm 32 and have suffered headaches since I was 6. That's not to say they have been clusters, but crippling just the same. Classically my pain is seasonal.(fall-spring)I do get random pain all year long, but mostly in cooler months.I've not tried alot of the scripts mentioned,but would like some ideas. This bout I've got something new to contend with. In the middle of the attack,as I'm trying to control my breathing,heart rate,and irresistable urge to beat myself about the head and neck with a bat,it feals like what I've heard panic attacks described as. I seem to have trouble breathing,I can feel the adrenaline bursts in my chest which of course makes the pain even more fun!!!If anyone else deals with this please let me know how. As for how I deal with the beast, the one thing I've found that helps(although sometimes impossible)is to stay as calm as possible,limit movement,and ironically-try to relax.Most of all-YOU are NOT crazy!! When I found this site and read the stories on the opening page, I felt such a flow of emotions I cried(good kind)If nothing else for the relatability. People who know what this is all about. To those out there who have never even had a headache and refuse to understand-count your blessings and byte me!
Sunday, October 29, 2000 at 10:15:54 (EST)

My name is Joanne I am dans wife. Dan has been suffering for 20 years. We thought it was getting better and last week 10/11/00, they came back worse than ever before. The doctor has him on all kinds of meds, and they are still coming thru. I feel so helpless. We are trying a new neurologist on friday.. I just hope there is something they can do. Any suggestions would be appreciated. Even some thoughts on how to help him to cope. Thanks Joanne
Daniel J murray <>
Coconut Creek, FL USA
Saturday, October 28, 2000 at 10:48:11 (EDT)

My name is Joanne I am dans wife. Dan has been suffering for 20 years. We thought it was getting better and last week 10/11/00, they came back worse than ever before. The doctor has him on all kinds of meds, and they are still coming thru. I feel so helpless. We are trying a new neurologist on friday.. I just hope there is something they can do. Any suggestions would be appreciated. Even some thoughts on how to help him to cope. Thanks Joanne
Daniel J murray <>
Coconut Creek, FL USA
Saturday, October 28, 2000 at 10:46:40 (EDT)

I started suffering from cluster headaches in 1986.I have tried all the different pills they have.Imitrix seems to help the most.Also,a hot shower,just letting the water hit you in the face seems to help a little bit.Whatever works,even a lil bit right?
bobvezina <>
Friday, October 27, 2000 at 22:05:10 (EDT)

As another sufferer, nobody but us realize just how unbearable this is... I wish my boss understood just how this cripples me... I get them day & night... Just started getting another cluster after about 10 months...damm now I have to go to a new doctor on my stupid HMO then get reffered to another waste of time neurologist just to say o.k., you've got cluster headaches, take this and come back in two weeks to give me more money for another perscription.
Riverhead, NY USA
Friday, October 27, 2000 at 14:42:21 (EDT)

I have just been diagnosed with Cluster Headaches and put on Imitrex. Would like to chat with some others who have these terrible headaches. Thank You
Jeremy Dundon <>
Reading, Pa. USA
Thursday, October 26, 2000 at 22:30:28 (EDT)

im loaded on drugs a doctor prescibed and im able to sit here and type with one watering eye and runny nose,the pain is masked but is still scary ,hope it goes soon
barrett roach <>
central sqaure, ny USA
Thursday, October 26, 2000 at 21:44:55 (EDT)

current ch sufferer
larry jack <>
des moines, ia USA
Thursday, October 26, 2000 at 20:49:39 (EDT)

I started getting these same headaches 6 weeks ago. is this what i have to look forward people are scareing me. what should i do. like i said this just started, maybe being so early they can do something for first one woke me up. your right very painful. pain on the left side of my head, down to my, then my teeth on that side only.seem to get one every couple of days. but yesturday got one at 5pm for about 45 minutes then at 10pm for about 30 minutes. thank you very much for this site.
Thursday, October 26, 2000 at 13:21:29 (EDT)

I have suffered from cluster headaches for eighteen years and the doctors just figured it out five years ago.I take the nosespray migrainal but it doesn't always help so I am seriously thinking about trying marijuana.
Katherine Burgoyne <>
Bridgewater, NS Canada
Wednesday, October 25, 2000 at 21:11:39 (EDT)

I never knew this site existed, but I'm glad I found it. I don't want to see anyone in pain, but it does help to know that others do understand. I don't want pity because of my pain, I just don't want to see people "roll their eyes" when I try to express what I am going through. Thanks to all of you for listening and understanding. Paula
Paula <>
Warwick, RI USA
Wednesday, October 25, 2000 at 19:02:29 (EDT)

This is an amazing web site, untill just the other day(when i stubbled accross this site) I thought I was alone with this affliction. I'm into my second day of going through this web site, due to breaks I have to take for "the demon" I have so many questions and I can't wait to read through all the messages to see if I can get some answers. Thank you to who ever made this page and to all the other sufferers that have added their input. I hope to be able to be there for others who also need help and support.
Sean <>
Prince George, BC Canada
Wednesday, October 25, 2000 at 15:18:41 (EDT)

i have suffered this hell since i was about 24. i am now 39. i've tried a million ways to rid myself of these aches, but so far, after 15 years, advil is the only thing that helps kill the pain. and i have to chew them immediately. i have no health insurance, so i really have no choice. i've been trying to get oxygen, but to no avail. my attacks come every 13-16 months, last from 3-5 weeks each time, and they can happen any time of day...any time of year. i need help and don't know what to do. the vein running down the left temple swells so much during an attack, i fear it will explode. brian baxter
brian baxter <>
new york city, ny USA
Wednesday, October 25, 2000 at 14:52:01 (EDT)

i have suffered this hell since i was about 24. i am now 39. i've tried a million ways to rid myself of these aches, but so far, after 15 years, advil is the only thing that helps kill the pain. and i have to chew them immediately. i have no health insurance, so i really have no choice. i've been trying to get oxygen, but to no avail. my attacks come every 13-16 months, last from 3-5 weeks each time, and they can happen any time of day...any time of year. i need help and don't know what to do. brian baxter
brian baxter
new york city, ny USA
Wednesday, October 25, 2000 at 14:46:59 (EDT)

I am wondering if anyone has tried Maxalt? and if so any relief from it? My insurance does not seem to want to cover it and want to find out if I should continue with the process of fighting my insurance company to cover it! Thanks..
Denice <>
Belmont, MA USA
Wednesday, October 25, 2000 at 10:12:47 (EDT)

I am a headache sufferer and have been at least since I was five. In fact, even as late as 29 years old, I got these tremendous headaches everyday and thought everyone else did also as a natural part of living. Anyway, from about 15 to 29 yrs. of age, I got relief by taking a nap when returning from anywhere, and taking 20- 50 Anacin per week with 1 - 2 liters of Coke per day. So in other words, all that aspirin and caffine really kept my headaches under control for 15 years. Now, I understand about the rebound effect and all that but even with the rebound, my headaches were controlable. My problem was that I started developing an ulcer at about 29 and had to quit the aspirin - then I really had problems. This was 5 years before the invention of Imatrex and for those 5 years I got little pain relief. In those years, the doctors would prescribe various pain killers which would work for a short time - 2 weeks to a month, then move you to something else. After a short while, they were out of painkillers to move you to. At that time, I was in bed and actually had to quit working as and engineer. About two years into this I started taking Enderol, this got me out of bed but I was still in intense pain most of the time. Later, I tried several of the profilatic drugs but the thing that really works for me is 1500 mg/d of Depokote. I take this 3 times per day and maybe I will slide by with only 3 headaches per week. If I miss even 1 dose, I get more frequent and intense headaches. But I found out last week that Depakote is coming out in a 24 hr variety. I doubt that I have the really severe and intense killer cluster headaches that you all talk about because mine are cronic and some other symptoms seem to vary slightly from your little quiz. However, several physicians, (including my wife who is an excellent physician), tell me that they think that my headaches have some elements of the cluster headaches. I rarely pull my hair out, or kill myself banging against the wall, but I have had the killer pain unbearable to the extent that my soul felt like it either was or had to separate from my body. Recently, while driving home, I experienced tremendous stabbing pain in my face, but also a unilateral migrane type with it. This tremendous pain forced me to black out several times even as I was driving. After I quit taking the aspirin/caffine, I averaged about 1 day per year that was headache free. The rest of the time I rarely had anytime that was headache free. Now, I believe that without the 1500 mg/d of depakote I would still have at least a migrane 100% of the time. However, after looking at your test, I do think that I also have some symptoms of the cluster, for I can identify at least 13 or more of the 16 symptoms. But I have some questions about your Kip test because pain is really a funcion of personal tolerance - and the way to get that tolerance up is to experience pain. I would like to know if you all think the two can co-exist because the docs are telling me that they can.
Danny <>
Greenwood, SC USA
Tuesday, October 24, 2000 at 23:03:36 (EDT)

I have had clusters since I was 35 yrs. old. Now 58 y.o. I was a chronic patient. Had 1 year relief 4 years ago & thought they were gone. Not so. Please I have tried many medications, Verapamil being my chose. However, oxygen is the life saver...full mask...secret is to breathe in thru nose and SLOWLY breathe out thru your mouth...DEEP breathing is difficult when in the thrones of that attact..but it helps quicker & gets you thru it. Also, if caught without oxygen somewhere...turn A/C on in car full blast & put face up to vent while REPEATEDLY DEEP breathing. I notice past 2 yrs. change in attacks my jaws also. I now use BENADRYL/allergy/sinus headache pills instead of Verapamil. Benadryl aborts all pain within 10 minutes. Go figure!! But please..remember to do DEEP breathing during attack....unitl it is gone. Takes a bit of coaching...but you can do it. Better than thinking about suicide! I do believe stress & smoking are big contributors.
Kay W. <>
Pompano Beach, FL USA
Tuesday, October 24, 2000 at 21:45:58 (EDT)

I've just statred another cluster (about a month ago) after a three year remission. Thought maybe I grew out of it. NOT!!! I am 40 years old and I've been getting headaches for as long as I can remember. I do get several types of headaches, but nothing even comes close to cluster headaches. It took several years for my doctors to figure this thing out, and that was almost twenty years ago. I've tried many drugs since then, both for preventative (yah right), and abortive puposes. I thought oxygen was a godsend until Imitrex came along. Now I have both! I am currently using the nasal spray Imitrex, but have the 20mg dosage and think that was a mistake because I can only take two a day, dosen't do much good for the four to six headaches I have everyday, so I'm thinking about going to the 5mg dosage. That or back to the injectiions and trying to consrve on those. For those of you who haven't tried either oxygen or Imitrex, please do. If your doctors (or insurance) company tells you that either is experimantal, tell them to do some more research. I did!!! Thankfully I have a docter (new one) that actually listens to me and my ideas. Hopefully we can kill this demon together. Great to know there is such a great web site for us to go to, and thanks for letting rattle on here. Take care evrybody :-)
John Teske <>
Genesee Depot, WI USA
Tuesday, October 24, 2000 at 16:30:36 (EDT)

My husband suffers from cluster headaches. We are trying different medicines but without much sucess. Is there a medical center that specializes in cluster headaches?
Brenda Lewis <>
Kingsport, TN USA
Tuesday, October 24, 2000 at 15:04:28 (EDT)

Clusterhead for 2.5 years. First round of attacks scared the pants off of me. Took several doctors and persistence to finally be diagnosed with CH. Doctor started with prednizone (sp). This knocked the beast away for a little while. Depakote did not work, same with egotamaine. Was started on Verapamil 1.5 years ago. With Irmatrex for bouts. The verapamil seems to have worked. have not had to use the Irmatrex for a year now. Still get shadows, but I can deal with them. Great board! Keep up the good work.
Chuck Spence <>
Point of Rocks, MD USA
Tuesday, October 24, 2000 at 11:33:18 (EDT)

I'm an oldtimer at this site. I always notice messages here from folks with questions and stories to share. Please check out "The Message Board" and "Live Chat" to connect with a whole family of folks like yerself. Those links to the left provide a way to manage yer pain. When yer next "head bangin"session ends...bang on those. Welcome Home. Walk in the Sunshine DEN
Dennis O'Connor <>
Conroe, Tx. USA
Tuesday, October 24, 2000 at 02:44:25 (EDT)

I am 37 and have had migraines since I was 6. I used to have them almost everyday. For approximately the last 10 years I have taken imiprimine (anti-depressant) daily. I have used Imitrex injections and tablets, Fioricet for pain, but I find that Wigraine works the best to abort the pain before it gets too intense. Today my pharmacist told me it is difficut to get and is probably being discontinued. I need about 12 Wigraine a month or I'm miserable. When the Wigraine starts to work I usually feel good for 2-4 days. I have just recently read that they are addictive and should be taken 5 days apart. This must have been written by a non-migraine sufferer. I feel so hopeless right now thinking I may have to stop taking Wigraine. It's taken all this time to have something that works well, now I may not have it to help me. I feel better just sharing my upset. It's difficult for non-migraine sufferers to understand.
Lisa <>
Shelton, CT USA
Monday, October 23, 2000 at 22:34:09 (EDT)

I am 51 years old and had cluster headaches since about 1973 till approximately 1993. I did not have them again till recently (early October 2000!!!). They have returned in intensity and on a daily basis. They used to last about a month and I hope it will be over soon. My lifestyle has not changed since they stopped in 1993 and I wish I knew why they have come back.
Charles Trojan <>
hillsdale, nj USA
Monday, October 23, 2000 at 16:18:40 (EDT)

I have been getting CH for the past 5 years...They just started again and I have tried many things. Pure Oxygen seems to help along with the Imtrix and also just started on Lithium. This is my first week on the Lithium and had gone through 3 days with out a CH! Hopefully this is going to work! I just want to say to everyone who suffers from CH, Don't ever think that there is not something out there that will help you! Keep trying different meds until you find the right one! I refuse to let CH run my life!
Dee <>
Boston, MA USA
Monday, October 23, 2000 at 11:37:18 (EDT)

I've had clusters since I was 19. I'm now 46, you do the math. Other than these headaches, I've been healthy. I've seen dozens of doctors and have taken more trips to the emgergency room than I can possibly count. I've taken every beta blocker, calcium blocker that I'm aware of. I've been given hepetitis by a doctor (from a headache clinic) that over prescibed verapamil. I've had spinal taps, MRI's, cat scans up the ying yang. I've been accused of being a drug addict so many times, I can't remember. The only drug I was ever legitimately addicted to was Vicodin. It is the only pain reliever my stomach will now handle. I hadn't had a cycle in 3 years. I thought they were over. Now they're back. I thank all of you people for posting your stories. It's nice to know I'm not alone. I've had the countless sessions of not being able to get presciptions refilled, of lying on the floor with one eye streaming tears, pulling my hair out. Once, during my worst cycle, I even tried a more final solution to ending the pain, but I failed at that and got myself into a different situation that I didn't want to be in. If any of you (and who probably hasn't) have considered suicide.... DON'T. For me, two things happened. I realized that my life effects a lot of people. And your life changes afterwards (providing you don't succeed). It leaves terrible scars (both mental and physical) that only adds to the problems we cluster migraine suffers have to deal with. I wish I had know about this site a few years ago.
Jeff Hurley <>
San Jose, CA USA
Monday, October 23, 2000 at 09:35:23 (EDT)

I just found this site and, like many of you, cried when I read about people who are going through what I am. I've been having them for 17 years- since I was 15. This year is the longest they've lasted- over a month now. Drugs don't help me- they only make me feel high and in pain which makes it worse. I'm scared to go to sleep, so I've only been sleeping a couple of hours a night- not good, I know, but anything is better than another headache. I read in someone else's post that sleeping sitting up helps them, too. I don't know why it seems to help some, but if you haven't tried it yet, it's worth a shot. Finding this site has made me feel better- I'm not alone with what I try to make myself feel better. Hearing that other people hit their heads to mask the pain was surprising to me- for a long time I thought was a nut for doing that. Now I know I'm not alone.
Roberta Wittling
South Bend, , In USA
Monday, October 23, 2000 at 02:21:27 (EDT)

I've been suffering from ch's for two years, but I don't have cycles. The longest period of no headaches that I've had in the last two years is two weeks.
jason berning <>
ia USA
Sunday, October 22, 2000 at 22:30:43 (EDT)

Chronic CH's for 14 years, months between for the last 3 years.
John Bartels <>
Boise, ID USA
Sunday, October 22, 2000 at 03:06:26 (EDT)

Great site! It's good to see that there are other people out there that I can relate to, and that I'm not alone. I'm currently going through a cycle. Not much fun!
Ronin <>
Halifax, NS Canada
Friday, October 20, 2000 at 22:16:31 (EDT)

CH sufferer for over 20 years. Am currently in a cycle and have noticed this cycle is substantially more painful than those before. Hope it ends soon as I am really sick from all the meds.
Gary <>
Loveland, CO USA
Friday, October 20, 2000 at 15:52:44 (EDT)

Oops I double posted! Sorry!
Rachel <>
Glasgow, UK
Friday, October 20, 2000 at 15:30:39 (EDT)

I found this site when my mum asked me to look one up for her, and I think its brilliant. Thanks whoever made it. And I also tried the "brain freeze" ice-cream on the roof of your mouth thing, suggested by an earlier entry to find out what it felt like, and all I have to say is "ouch"! And I pity all poor CH sufferers, and hope I never experience them.
Rachel <>
Glasgow, UK
Friday, October 20, 2000 at 15:23:39 (EDT)

I found this site when my mum asked me to look one up for her, and I think its brilliant. Thanks whoever made it. And I also tried the "brain freeze" ice-cream on the roof of your mouth thing, suggested by an earlier entry to find out what it felt like, and all I have to say is "ouch"! And I pity all poor CH sufferers, and hope I never experience them.
Rachel <>
Glasgow, UK
Friday, October 20, 2000 at 15:23:36 (EDT)

My mum is a clusters sufferer, and has constant headaches. None of her medication works, and she has had these headaches for weeks at a time. Can anyone give any more info on long-lasting CH?
Rachel <>
Glasgow, United Kingdom
Friday, October 20, 2000 at 15:11:31 (EDT)

Oops, I accidentally cut my last entry short, so here I go. Here is how my story goes... Typically, I will feel the first tinges of a headache coming on ( dull throb in the left temple ). At that point I take a BC powder. The throb subsides for maybe an hour. Then it starts again, and I take 3 Exedrin. Subsides again. Then it comes on full force and I take five more exedrin and spend an hour or so throwing up from too much aspirin and banging at my temple with the heel of my hand. When my temple area gets numb from the hitting, I then press my thumb into my left eye REALLY HARD. Partially to inflict enough pain to myself to take my mind off of the headache, and partially to hold my eyeball in its socket, it really feels like the pressure will just pop it right out. I have tried to explain to my fiance and my family what I go through. But they couldn't grasp it until I sent them the link to this site. After they read it they were horrified at the level of pain I experience. When I wake up in the middle of the night with an "ache" I try to be quiet as to not wake the family up, so I rock side to side beating on my head with the heel of my palm, and try to keep the moaning to a minimum, to no avail, of course. Actually, The Tylenol and exedrin help sometimes, regardless of the stomach damage I am doing. It doesn't matter, Godspeed sweet relief. I beg anyone who is on AOL to add me to their buddy list and IM me so we can talk about it, I would really love to speak with ANYONE who can offer hints or tricks or just know what I am talking about. Thanx.
Phil Ridge <>
Vacherie, LA USA
Friday, October 20, 2000 at 00:46:44 (EDT)

I am a 27 year old man, and I just want to say that I was dealing with an attack when I found this site last night. I have suffered from clusters for maybe the past 4 years or so. I must say, I literally cried when I found this site, and saw that I have some people out there that can actually understand what I am going through.
Phil Ridge <>
Vacherie, LA USA
Friday, October 20, 2000 at 00:30:55 (EDT)

I have just been diagnosed with CH this morning, my first attack was when I was 17 yrs old... I'm at a loss for words.I dont know whether to be glad I dont have something worse..or.. I found the worse
Richard Nixon Estrella
Miami, Fl USA
Thursday, October 19, 2000 at 14:51:01 (EDT)

My name is James (Jim). I am 46 years old and I have been suffering from CH for about 5 yrs. I don't want to repeat everyone elses stories, you all know how I feel and what I am going through. I do want to thank everyone here for being helpful, supportive and offering words of engouragement to my wife, Connie,who has been coming here daily since she found. Without her support, and understanding throughout this ordeal, and my 15 year old daughter, I think I would have ended it a long time ago. Thanks so much.
James (Jim) <>
Hazlet, NJ USA
Thursday, October 19, 2000 at 14:02:27 (EDT)

I am 24 years old and have suffered from cluster headaches since I was 17. I have done everything imaginable to get rid of these, and nothing seems to help. I had the local doctor's bafiled for the first 5 years. I was actually only diagnosed with cluster headaches a year ago by a doctor up at the Mayo clinic. I frquently wake in the middle of the night with these. It's to the point my 5 year old just says "oh, dad has another headache.", and she knows enough to leave me alone unless she is bleeding or dying. If any one has any suggestions that I may not have tried please let me know.
John <JohnFreimuth@Hotmail.Com>
Lismore, MN USA
Thursday, October 19, 2000 at 02:13:58 (EDT)

Great site,good to know we are not alone in our pain and suffering
mark mouland <>
kenilworth, warks uk
Wednesday, October 18, 2000 at 11:28:55 (EDT)

I have suffered from cluster headaches for over thirty years now. I have gone through all the experiences detailed on your home page, and more. When someone who has not experienced clusters asks how they feel, I am at a loss to explain in terms to which they can relate. I finally found a way to come close, however. I ask them to imagine eating a huge scoop of ice cream in one bite, causing what my kids refer to as "brain freeze", the quick temporary headache cause by cold food on the roof of the mouth. Imagine that as you press your hand to your temple, waiting for the quick but extreem pain to pass, that instead of going away, it just continues and intensifies for hours. I find many non sufferers get a better feel for what we go through by thinking of it in those terms. I have taken many drugs over the years. The most effective has been prednisone, but the side effects are terrible. The second best for me has been a combination of lithiam and verapamil (best guess at spelling), taken together. I have been able to shorten the length of time for most headaches from hours to minutes with imitrex injections, but can only use those twice in one 24 hour period, which is not always enough. I am always looking for new meds. I am glad to see that there is finally a home page for us. I will check back here often. Terry
Terry Bagby <>
Arvada, CO USA
Wednesday, October 18, 2000 at 10:50:21 (EDT)

It was very interesting that other people can share my pain.
michael brown <>
methuen, ma USA
Tuesday, October 17, 2000 at 18:39:28 (EDT)

i am english and have cluster headaches too. I would love to meet someone else who has cluster headaches too, preferably female and who has them on the right side.
paul taylor
Tuesday, October 17, 2000 at 06:45:41 (EDT)

My 22 year old daughter, Jessica, was diagnosed with her first Cluster Headache this past Saturday. I've had migraine for years, and I can't believe I missed the signs! She is still at home suffering with this episode, which really started Friday 10/13. She is not working at this time and has no insurance. How can anyone keep a job with these headaches? She also has a 3 1/2 year old son, who can't understand why his mommy can't play with him. The doctor who saw her did some blood tests and took an x-ray of her sinuses. After 3 hours, he told us everything it wasn't, then he said her symptoms were typical of Clusters. The only medication he gave her was an injection of Tordal and a prescription for Tylox. He said that she was too far into the process of the headache, that Imitrex (which I use for migraine), would not help at this point. The Tylox makes her sick to her stomach, and I suspect she has a rebound headache from it. I made her stop taking it yesterday afternoon. I want to know if Imitrex has worked for anyone the fourth day into the bouts of headaches???? Again, I would like to know how anyone keeps a job? How you can afford the medication? I thought maybe she can go on total disability. We live very modestly, and have to budget our money now. Please, someone, anyone, help us.
Susan Maulsby <>
Tulsa, Ok. USA
Monday, October 16, 2000 at 16:03:19 (EDT)

Somewhere to relate, thanks
alan halcrow <>
Grays, essex England
Monday, October 16, 2000 at 08:19:06 (EDT)

I am 57 years old and have suffered from migraine/cluster headaches since I was 8 years old. I get migraines every day. I have been all over the U.S. over the years to be tested and am always trying the latest thing on the Rx market to "cure" (what a joke)chronic migraine headaches. Botox is not being advertised to help migraine/cluster headache suffering people. Please, please think before you have this done. On April 20, 2000, I had Botox injections in my head at Mt. Siani Hospital in New York. Within 48 hours, I had an allergic reaction and of course the reaction was a headache so terrible in the height of the tolerance of pain and location in the crown of my head, I almost went out of my mind. Botox is one of the most potent forms of "poison" or botulinum Toxin anyone could have put in their body. It is aadministered usually in the muscles. I had 8-10 injections in my temples, as well as along my forehead line. The Botox paralyzes the area it is injected into. It paralyzed an invisible line across my forehead and made my forehead feel like it was in a vice. I have a very high tolerance for pain, due to the fact that I have suffered from these migraine/cluster headaches for over 50 years, but I never had such excruciating pain starting at the very top of the crown of my head. The pain traveled as though it was being filtered through the veins, muscles in my brain and stopped abruptly where the I received the Botox injections in my head. It felt like the pain was trying to get out of my head any way it could. When I called Mt. Siani on a Friday, I was told to immediately go for an MRI and not to wait for the weekend, because they told me something was very wrong and it sounded to the doctor I was speaking to, that I had leakage of this toxin poison into my brain. This Botox is supposed to last in a person's body for 3-5 months. I think I speak for many headache suffering people, that we all know our bodies very well and how we tolerate pain and I knew something was wrong and is still very wrong. The degree and location of the pain stopped after 5 months, but because I suffer from clinical/bi-polar depression, anti-depressants are one of the drugs that are not to be mixed with this Botox. I learned all this from visiting the Johns Hopkins internet site under headaches. It would be worthwhile for any of you to visit this site, too. I saw in writing, what I have been trying for years to explain to a million doctors, who would not believe me. This one article mentioned that there are actually ten different types of migraines a person can get. There is a doctor/professor/director of Neurology at Johns Hopkins Hospital in Maryland who wrote this article and it felt so good to finally read from a doctor's own words what we all have probably been told didn't exist, as far as our cocomplaints about our own person headaches. If you want to know more or if you want to learn the exact internet website, please contact me. The name of this doctor is Dr. Bucholtz at Johns Hopkins Hospital. His office told me over the telephone after I suffered the reactions from this Botox, that he never would have advised me to have these injections, because they do not work for migraine sufferers. Imitrex and demerol/visteral injections are the only things that help me. Also Darvocet-N 100. I am on Disability because of my migraines. I used to miss 30-40 days a year ddue to my migraines, and that wasn't counting the days I went in late or left early. The reason I got away with this, was because of the Vice President position I held. If you want to reach me, you can also try me at: . I have enjoyed reading all of your comments and hope that this info will help someone, before they go through a similar experience with Botox.
Sheila Cole <>
Rumson, NJ USA
Sunday, October 15, 2000 at 21:59:38 (EDT)

Hello fellow sufferers... I've been a victim of cluster's for about 12 years, starting about a year after a car accident I was in. It took several years before I was able to pinpoint what they were, believing for a while that they were some kind of allergy or sinus problem. I've tried several different medications in the past with very limited results. So far, I have found that the best remedy for myself is laying down on my back with an icepack directly on the back of my neck. I have definitly noticed as well that I get big knots in my back on the side of the headache. If anyone knows if there is some kind of message therapy or accupuncture that they have found effective, I would love to hear about it. Thanks!!
steve <>
minneapolis, mn USA
Sunday, October 15, 2000 at 18:40:48 (EDT)

Well, about three years ago, at the age of 15, I began getting headaches that awoke me up every night, but only for about two weeks straight. These headaches were only on my right side of my head, and felt as if someone had hit me with a hammer, and along with the pain of my head, I felt real weak as if I couldn't stand up, then my stomach started hurting, but I aslo felt nausious. My doctor, although not sure of what was going on, perscribed me three refills of 400mg Ibuprofin and then told me to just create a "headache diary" to figure out what triggered the headaches. A little while later, he came to the conclusion that I had cluster headaches. Since then, I haven't gotten a headache that bad until last week. It was the exact same constant pain, on the right side of my head, with the exact same symptoms as before. And every day since last Monday, I've been getting these headaches. It's basically nothing I can really do now, but sit up in the middle of the night and cry...because I'm not at home...I'm at college, with only 500mg of Tylenol and Excedrin Migrane...but neither of those seem to work...and I don't know what to take!!! Please, if anyone knows what I can take to help relieve these cluster headaches, please help me and send me an e-mail!!!!!!
Jessicalia <>
Rochester, NY USA
Sunday, October 15, 2000 at 18:16:01 (EDT)

Well, about three years ago, at the age of 15, I began getting headaches that awoke me up every night, but only for about two weeks straight. These headaches were only on my right side of my head, and felt as if someone had hit me with a hammer, and along with the pain of my head, I felt real weak as if I couldn't stand up, then my stomach started hurting, but I aslo felt nausious. My doctor, although not sure of what was going on, perscribed me three refills of 400mg Ibuprofin and then told me to just create a "headache diary" to figure out what triggered the headaches. A little while later, he came to the conclusion that I had cluster headaches. Since then, I haven't gotten a headache that bad until last week. It was the exact same constant pain, on the right side of my head, with the exact same symptoms as before. And every day since last Monday, I've been getting these headaches. It's basically nothing I can really do now, but sit up in the middle of the night and cry...because I'm not at home...I'm at college, with only 500mg of Tylenol and Excedrin Migrane...but neither of those seem to work...and I don't know what to take!!! Please, if anyone knows what I can take to help relieve these cluster headaches, please help me and send me an e-mail!!!!!!
Jessicalia <>
Rochester, NY USA
Sunday, October 15, 2000 at 17:44:39 (EDT)

Hi ,I have had CH for over 5 years.the doctor's have done sinus surgery,allergy shots for 2 years and i found some relief from Verpamil and Cafergot along with oxygen i can make it.i sure wish ther was a way to stop the pain,i lay down to sleep and 45 min. later i'm up with the headache'after i get rid of it about an hour or so i try to get some sleep but you can guess what happens i'm up again in 45 min with the same headache again 3 to 4 hours of sleep a night if i'm lucky,any help would be very welcome !!
Bill Maki <>
Houston, TX USA
Sunday, October 15, 2000 at 15:17:34 (EDT)

I am joining this site because my husband has such severe cluster headaches. We are trying to find support and education. Hopefully we can learn little tips to alleviate his painful experiences.
Carol Gideon <>
Checotah, Ok USA
Sunday, October 15, 2000 at 12:03:43 (EDT)

Just visiting for some information on the headaches.
Shawn <>
Potterville, mi USA
Saturday, October 14, 2000 at 23:17:26 (EDT)

Hi to all the new friends I met at the Convention in Las Vegas in August. My husband Allan is a CH sufferer. He is at present back in hospital again. This is the 7th visit this year. The only treatment that brings him any relief is Pethidine Injections which he has 200mg every four hours. I am becoming very concerned at the high levels of narcotics he is on but the Drs seem to think its ok. We have tried everything and are getting desperate. His job is now under threat due to the long periods of absence and all that does is add another stress to our lives. He has been ill this year since April. The clusters last for between 10 and 15 days with the last 7 0r 8 days in hospital to keep him on track with the pethidine. Just needed to unload how things are at the moment. Thanks for listening.
Catherine Phillips
Melbourne, VIC Australia
Saturday, October 14, 2000 at 21:14:07 (EDT)

I hve had two episodes of cluster headaches I'm now waiting for another one I was told they happen every two years at the same time I almost feel it coming I'm scared no one understands when it comes help
Pam <Krooty62>
Salt Lake, UT USA
Saturday, October 14, 2000 at 20:36:44 (EDT)

I am a clusterhead. About 9 years ago I was getting the most most intense headaches one could imagine. Previously, I had migraine headaches years ago (approximately 20 years, and while they were far from "being a picnic" and lasted sometimes for days; they were nowhere near the intense pain I suffer for months at a time being a clusterhead. I'm afraid of going to sleep, as I know AN EPISODE will wake me during the night. After visits to many physicians, I finally got a doctor to diagnose my problem as clusters. Previous diagnosis were TMJ, tension headaches, sinus infections,even once they thought it was a brain tumor (catscan). If I hadn't done some research, this doctor would not have come to a proper diagnosis either. She gave me a prescription for Fioricet and it has given me two full nights sleep, cluster free. I have had only one headache in the last 48 hours, even though it was a 'duzzy". However, I'm not to take more than 6 tablets per day and she will only give me three days worth of this medication, due to side effects. Don't know what I going to do for the next few months. Keep taking to the doctor I guess. Yours truly, George W. Roby
George w. Roby <>
Grand Rapids, MI USA
Friday, October 13, 2000 at 18:39:19 (EDT)

after getting a horrible headache behind my right eye nearly every day at the same time for the last 6 mos.,,i think i've fnally figured it out and here i am!--great to know a site like this exists and that i'm not alone-getting ready for my daily 45 mins. of hell at 5-6 o'clock today-i'll keep in touch
j c mckerr <>
peterborough, ont canada
Thursday, October 12, 2000 at 13:24:22 (EDT)

i just heard last week on the news that some university has linked cluster headaches with sleep apnea. i was on your site about a year ago, and am still cluster free. i wear my comtinous positive air pressure machine, (or cpap) every night. i have to replace the mask once a year, but as you know it is well worth it. some of you are suffering needlessly. go to a sleep clinic and get checked as i did, it may cure you also. also the only thing in the world that would knock a cluster out for me was an injection of imatrex. good luck
tony gillis <>
de land, fl USA
Tuesday, October 10, 2000 at 21:19:45 (EDT)

Tuesday, October 10, 2000 at 16:11:38 (EDT)

Thank you for all the wonderful information on Cluster headaches. I took all the information I copied off the computer, highlighted everything of major importance concerning my troubles and showed them to my Doctor. He was impressed and finally believed me when I told him all the problems I was going through. He asked several questions and finally decided it was time to see a specialist and determine if I suffer from sleep apnea, which may be the trigger that brings about my cluster headaches. Things may finally be going my way. Keeping my fingers crossed.
Melody Coster <>
Grants Pass, OR USA
Tuesday, October 10, 2000 at 16:10:15 (EDT)

After reading some of the messages, I feel very fortunate to have had the demon for only 11 years, it only took six to figure out though. Thanks for a place to with usable information and a place where people actually understand what the pain is. I was been in the "in between" for almost 1yr and 6 monthes, it was really fantastic. I almost throught I was a regular person. I still had to take my meds though, but at a much lower level. I live for the "in betweens", but the demon has returned. Two monthes earlier than the last season which lasted 4 1/2 monthes -- the fear returns. I will pray you all stay in the "in between" and never have to peer into the depthes of pain again.
Charles Overstreet <>
Fairfield, CA USA
Tuesday, October 10, 2000 at 12:10:55 (EDT)

CH since 11 years. contact to you-first time. relation from german CH. Great to find you-so I have to polish up my english ! First I`try to read your informations.Don`t expect new ideas. Greetings fred
Erdmann, Fred, age 68 <>
near Lübeck , SH Germany
Monday, October 09, 2000 at 16:52:56 (EDT)

I was ill December 1999, I was told that I had viral Menigitis. In May this year I started to suffer with bad head aches, I have a general headache that is like having my head in a vice, then I get stabbing pains on top and around my eyes, when the GP shines a torch in my eyes I feel a burning sharp. I am at my best on a morning but the day goes down hill from there, I lay down in a dark room, I just wish I could sleep it off. When I go to bed at night I can't sleep. These last for 2-3 weeks with 3-4 days off before starting again. My GP has today told me that she thinks I have cluser headaches, but I cannot be treated for them until I go to hospital on the 19th October.
Julie Connolly <>
Leeds, GB
Monday, October 09, 2000 at 15:30:33 (EDT)

I have been a Chronic Cluster HA sufferer for about 30 years Thank God for Imitrex inj. I am a pharmacist and can help with the conservation of your Imitrex. I know some short cuts to use. e-mail me if you have questions.
Jim Detwiler <>
Phoenix, AZ USA
Sunday, October 08, 2000 at 22:14:15 (EDT)

Was A CH sufferer since 1971, would get attacks every year for periods of days, weeks, longest attack was for a solid month 24/7 back in 75. Have only had one attack (Dec 98 )in past 6 years. The only Dr that came close to telling me what I suffered from, also told me ( his opinion ) that he felt they are caused due to a chemical imbalance in my body ????? Any way Back in 1995 I started taking Blue Green Algae....and much to my relief I stopped getting my annual attacks....Why did I get one in 1998 ..... I don,t know for sure .... what I do know is I had run out of my supply of Algae, and what with Business Year end, Xmas Season etc...I never bothered to replentish my supply.....had I only Known.. 98 was the worst attack since 98.. 3 weeks of every hour on the hour they would come, 24/7... That is when I did a search on the net & found that 100% pure oxygen may help. Anyway I lived with my Oxygen Bottle in the family room , replentished my supply of Algae and finally got through this attack, returned the Oxygen Bottles, and keep a sharp eye on my algae supply. That was the last CH attack I had, to-day is Oct 8th going on 2 years.....!!!!! It works for me, It may help others out there that feel there is no reprieve for them. Please accept this bit of shared info. as it is meant, one persons sharing of how I have found relief. feel free to contact me if you have any further questions. May you all have many pain free years. Regards Bob Duncan
Bob Duncan <rduncan>
Richmond. ., B.C. Canada
Sunday, October 08, 2000 at 20:58:20 (EDT)

I have been a CH suffer for 28 years and finally found something to take away the pain (at least for a while). Imitrex injections, have worked wonder for me. Just a little worried that I am taking to many! Thanks for this wonderful site. Good luck to you all!!
Kim <>
Royal Oak, MI USA
Sunday, October 08, 2000 at 20:16:27 (EDT)

It is unreal to see so many people describe your worst nightmare. I am 31 and was diagnosed with CH & "regular" migraines when I was 17. My father & grandfather were both suffers of CH while my mother suffers from migraines. Over the years on those worst occasions a trip to the hospital for a heavy duty shot of demoral after being thoroughly examined & treated as a "junky" seemed to help. Luckly with the understanding & help of my husband & the advent of Imitrex my suffering is less. In the search for treatment I tried a chiropractor who showed my husband deep tissue massage & pressure points along the scalp, now when I'm attacked he can help relieve the pressure by massaging those points, if that doesn't work then the good old Imatrex is taken.
Catherine Adams-Puett
Porterville, CA USA
Sunday, October 08, 2000 at 13:48:32 (EDT)

I am a cluster headache sufferer and would like say i wouldn't wish them on anybody and that i have sympathy for anybody that has them,they are terrible.
Saturday, October 07, 2000 at 19:44:31 (EDT)

Been suffering continually for over 3 1/2 years - always thought it was caused by my smoking, however reading the stats, that may not be the cause. Glad to have found this site and will refer to it often. Thanks.
Rosemary Wolf <>
Waukesha, WI USA
Friday, October 06, 2000 at 22:59:51 (EDT)

We all know must of these attacks happen after we go to sleep.I've found that sleeping sitting up seems to help sometimes
Kelly <>
DetroitMi, MiWe all know USA
Friday, October 06, 2000 at 21:31:06 (EDT)

Reading through some of the "cases" made me have deep compassion for these guys. It might sound crazy but the only immediate relief I get is from rigourous exercise! It was the only saving grace before I started the medication I'm on now. Like some of the sufferers I would awake in the early morning hours with a living nightmare, put on my exercise cloths and run (sometimes in the rain. Once my breathing became rapid (lungs almost burning) the headache would go away. I am now taking a drug called Sansert(by Sandoz) that works well for me in reducing the frequency and intensity. We will be getting a new internet service soon so I may not be able to reply. I will however participate after we get the new service. This is a good idea! Hope this helps someone.
David Tibbs <>
Birmingham, Ala USA
Friday, October 06, 2000 at 18:39:20 (EDT)

I've had migrain headache problems off & on for about 5 yrs. Occuring mostly during times of "overload" ... when I have more to do than I can handle. In the last 2 or 3 weeks I've been having headaches with pain in my eyeballs. My gosh! I'm working with my doctor. Any similar experiences or advice is appreciated.
Melanie <>
anchorage, ak USA
Friday, October 06, 2000 at 15:13:35 (EDT)

Hello! I am 33 years of age and female, I have been suffering from cluster headaches since I was about 15. At first I was afraid to get check thinking I actually had a tumor or something. I was not clinically diaginosed until I was in my early 20's. Since then I have tried every medication known to the human race for pain releif. As I went through your survey I saw all of the medication that I have tried and that has failed. At night when I get an attack I feel completely helpless so I can imagine how my husband must feel. It's like a ritual; pain starts while I'm in the middle of a good dream and all of a sudden this horrible pain intrudes, I think at first where the *!*!*! did this come from then I'm awake. First my husband runs for the medicine (hm what will it be this year??) Then he brings the ice pack then the klenex then he gets out of the way. I have thrown things sworn the most ungodly words I didn't even know I knew. And all trying not to wake up my two year old. I am sooooo Happy that I have found this site. When I try to explain to people or doctors they think yeah she has a headache. But the do not understand. I feel like I am going crazy! Well thanks for listening.
Lisa <>
Eugene, OR USA
Friday, October 06, 2000 at 13:53:54 (EDT)

Am 48 and have been suffering from CH since age 24. Episodic: 18 to 24 months - 3 to 4 attacks per day (mostly nights - 1 to 2 am) - duration: 1 to 2 hour. Do not know what it feels to have a "normal" headache. When I hear people say: "I have a headache" and still see them shop and drive, can´t quite relate as in my case, in the days where the doctors said: sinus problems and may be a little stress, I was banging my head against the walls. What works for me: Cortisone preparation to lessen the frequency of the attacks and their intensity plus Imigran (pills or injected) at the very beginning of an attack Oxygen therapy: 6 liters/per minute and only when breathed in at the beginning of an attack. Problem with oxygen is that the Scuba Diver outfit is not practical for shopping or for meeting rooms In parallel: hot/cold treatment and water - water - water since I found this advice on this site and it seems to work Avoiding: alcohol of any sort (especially red wine - One headache was trigged by my neurologist with Tanin extract one of the redwine component, cheese, nuts and chocolate What does not work: Verapamil (no matter what the dose is) or anykind of ordinary headache medication. Additional piece of info: Last two attacks were 95 and 97 and seemed milder than when I was younger. Since September 99, I am taking Hormones to prevent oesteroporose (a bone disease women get when getting older) and this time around (3 week into it) is a violent as it was 10 years ago. I believe hormons play a big role in there, espeically since I did not suffer CH during any of my three pregnancies. Also: Flew back from Chicago to London last week and a headache which normally lasts 1 hour, went on for the duration of the flight. Sucking my air_way_home through 3 bottles of Oxygen (thank you United) helped a lot. Stumbled on this site by accident, looking for information to give my family. Great to have found it Catherine
Catherine Weiss <>
Munich, Germany
Friday, October 06, 2000 at 09:50:45 (EDT)

My family, nor I, knew that such an odd, persecuting illness as cluster headaches happened, before the month of August 2000. Tonight, at 2:40 A.M., I awakened with a bout of pain, so I decided to try to leave-my-spouse-alone, and to use the web, to try not to feel so alone. I read, in the post archives, repeatedly, that a lot of individuals choose to be by themselves,when pain comes. Well, I may be a bit of a troublemaker,... I desire an audience, when I am having "a spell," and my spouse is a very tired, grumping guy, because I have kept him up, and he is a business executive, . . . He almost lost pay, almost was forced to take leave of absense, this past month, over my illness. *** in order for us to figure out that - No, I was not dying. I had no tumor or aneurysm. The only problem with my head (physiologically speaking) is that it seems to express a strong desire to make everyone think I just really, by all symptomatic indicators occurring, might be dying -right in the next forty-five minutes to two hours, three or four times a day, over the next month ot two, . . . because how could pain be so sharp, and insistent, and not mean physical death looms? Oh well, stranger things do happen. Cluster headache is one of those stranger things in existence; To me, it does have a certain life-to-death-to-life air about it, because when I started to get to the end of a cycle, my life had been so interrupted that I felt changed, like I was somehow starting over, modifying, subtly -as though the pain had some sort of reincarnating mental effect. No one had this sort of psychological description, in the post archives that I read so far. The medical team that I encountered -in this area of NC, they are good, competent doctors. I really appreciate them, but God only knows how, even with my spouse's job, we can compensate for the sudden ER bills. We are covered by insurance, but even with insurance - this thing, I believe you dub it "the beast" - ruins hard effort to have stable finances. I don't really have any advice for anyone about the disorder, since I am just trying to get used to the repeat performance I do -with no small amount of melodrama, from all indications, with a profound intensity that can spook bystanders, and some audiences. Cluster headaches are a show that resonates with darkness, and I just have to know that there is light, but it won't come through at the time of the pain, and just wait. Reading your archives helped me a great deal. I felt I ought to communicate also, however sparse my words are, since this whole anti-experience of cluster headaches is new- in my life -and therefore, not one I've completely internalized. If I come across effects that do not involve using prescription medications, which lower or abort pain, I feel really optimistic. At present, I am just about over my spell, and I am going to thump down in the bed. By the way, Good morning. I'm goin' to sleep. Thanks for the website. It oughta keep me out of trouble - bothering people who are not clusterheaded.
Martha E. Gibson <>
Albemarle, NC USA
Friday, October 06, 2000 at 05:43:21 (EDT)

I don'tget out much but "Oprah" keeps me in touch with life out in the big world, it's a highlight inmy day. Thankyou Oprah.
Christine Lochrin <>
Newcastle, N.S.W Australia
Friday, October 06, 2000 at 04:59:16 (EDT)

I don'tget out much but "Oprah" keeps me in touch with life out in the big world, it's a highlight inmy day. Thankyou Oprah.
Christine Lochrin <>
Newcastle, N.S.W Australia
Friday, October 06, 2000 at 04:58:48 (EDT)

I am 47 years old and started getting cluster headaches when I was 25 years old. My father, now 73, got cluster headaches starting in the early seventies. He thought he had a brain tumor. After his ordeal, I pretty much thought I knew what was happening to me when they started. He has been in remission since 1988. I recently went 1.5 years without a headache, but got a wake up call this past August with a headache every 2 hours from 9:30 PM to 5:30 AM every night. But, they only lasted 5 to 10 minutes per episode. They were incredibly intense (I was amazed at the end of the episode that only 5 to 10 minutes had gone by), but I was getting very little sleep due to the frequency. I had tried prednisone during my last episode over a year ago so tried it again. This time, it stopped the headaches until I was off the medication and they came back. I am on predisone again and have slept through the night 2 out of three nights with a minor headache last night. It appears to be the only thing that really works to stop them. I am hopeful that the prednisone will stop the cycle as it did the first time I took it. We'll see. FYI: Dr. Kudrow was my doctor in the seventies and knew about predisone's effect then, but he told neither my father (a chronic sufferer with 3 to 4 headaches per day for over 20 years)nor me at that time. We relied on oxygen and Calan for control. I am the director of technology for a high tech company and have done quite well in spite of these damned headaches. At least for this episode, they are predictable in the timing and length (approximately 10 minutes) which makes it easier to deal with. I am extremely grateful that I found this site, though it does depress me that so many of us are going through this. Thank you George Bacon
George Bacon <>
Zionsville, IN USA
Thursday, October 05, 2000 at 20:35:07 (EDT)

does this ever stop
heather kirk <>
aberdeen, scotland
Thursday, October 05, 2000 at 19:06:37 (EDT)

Hello everyone. After 8 years of suffering I feel confident that my problem has finally been diagnosed as cluster headaches. I have been through all traditional routes including allergy shots. Mine seem to occur in spring and early fall. They last a couple weeks. I actually went almost 2 years without symptoms but they came back last week with vengeance. Glad to see there are others.
Jack Tucker <>
Kingston Springs, TN USA
Thursday, October 05, 2000 at 12:12:48 (EDT)

It's SO great to see that I'm not an abnormality of nature!:) Although I haven;t seen anyone who gets them EVERY year and a 1/2,Like CLOCKWORK!! But they come on in either the Spring or the Fall.I've taken every one of the mentioned med's for preventing no avail. BUT, Imitrex shots will stop a full blown CH in about 5 minutes!! Now that i have good Insurance, I will never have to experience a full blown cluster again!! I have 7 stiches in my forehead,broken fingers and a messed up eyeball(stuck it with a pin to releive the pressure) from Full blown clusters that started 16 years ago. GOD Bless you all Ed
Ed Davidson <>
Rome, NY USA
Thursday, October 05, 2000 at 11:25:23 (EDT)

Hi...I am new here but going thru h*ll right now. Was wondering if anyone knew what Imitrex can do to you? I have been doing 6-8 shots a day. I know i shouldn't but the pain makes it an easy choice. Chuck
Chuck Palmateer <>
Poughkeepsie, NY USA
Thursday, October 05, 2000 at 05:39:49 (EDT)

Im a 39 year old married female and i have been suffering with cluster migrains since i was 13years old My symptoms are: knife like stabbing pain on the right side of my head accompanied by right watering eye and ear, my right nostril glogs up, the right side of my face sags and i almost always vomit. I have been taking 80mg of prozac for the past 2 years and in that 2 years i had no headaches at all. Today, October 3rd marks the 5th day in a row where my headaches have returned, I am told that I can not use Imitrex because it will cause Seratonin Syndrome, I dont know, I think I would rather have seratonin syndrome then a headache, come to think of it i would rather give birth to 2 10 lb babies in a row then to have a headache. I pray everyday for these headaches to go away. my life is at a standstill till they go away. Life? this isnt a life its a prison.
Thursday, October 05, 2000 at 00:27:10 (EDT)

i am 47 yr.old,female, have had headaches and c.h. all my life that i can remember. as it turns out, my father also suffers with them and even gets them in the same spot over his eye. i wonder if anyone has had success with any alternative remedies or special diets.......thanks
dana <>
woodstock, n.y. USA
Wednesday, October 04, 2000 at 22:46:40 (EDT)

Great to find out that there is a support group for those of us who suffer from CH. I've been a sufferer for about eight years now, I guess you would call me chronic. I average about one or two a week, sometimes one or two daily. Seasons and weather seem to make no difference. When I first started getting CH, I thought I had a brain tumor. It took about six months for me to get to an ENT specialist who determined what was wrong. I use Oxygen, and that seems to be the best for me. I tried Ergotamine, and all I noticed was that it made my hands and feet feel cold. I have a suggestion for a possible cause of CH. Two years ago, I was going through a real stressful phase in my job and getting at least one real killer, lasting from a half hour to an hour daily, and usually a couple of little ones. Since I retired, I have had only about half a dozen real bad ones in two years(knock on wood). I've also noticed that when I'm really stressed, the CH's come any time. I wonder if anyone ever tried to connect stress and CH. A coworker of mine told me that his CH stopped when his divorce became final. I still get CH, but they usually follow the pattern of coming after I have been asleep about an hour, and Oxygen usually knocks them in about ten to twenty minutes. My heart really goes out to some of the people whose notes appear in the guestbook. Just remember you're not alone. There are a lot of us out there who know exactly what you are going through. I know that doesn't make it hurt any less, but at least you know somebody cares.
Stephen M. Carbaugh <>
New Oxford, PA USA
Wednesday, October 04, 2000 at 21:21:18 (EDT)

I have suffered from CH's for 14 years. They are like an ice cream headache that last for 2 - 3 hours. I usually get them once or twice a year and require Imitrex by injection along with other drugs such as Verapamil and Topomax to control the pain. The episodes usually last 1 to 2 months with the use o medication. I am glad to see that I am not the only one.
David Hunter
Vancouver, BC Canada
Wednesday, October 04, 2000 at 20:45:00 (EDT)

this is a cool site! i told one of my friends and he liked it to!
Liz <>
Butte, Mt USA
Tuesday, October 03, 2000 at 21:19:52 (EDT)

Dear Reader's I feel Guilty! I've read this web page from stem to stern and personally know a person (not on the net)that has suffered from Clusters for years-I realize just what pain your in,no one should have to feel that much,ever! I feel guilty since being Autistic I'm at the opposite end of the Spectrum I don't feel any pain at all to speak of.In fact as of this writing I have been living with two hernias and a broken hip all have healed on their own to a large degree. I never felt the pain when the injuries occoured that should have told me to ease up or two weeks later setting in the E.R. Sick but unable to feel where the injuries might be. I know the dumb looks of a doctor with out an answer, believe me. Actually the hernias finally became bad enough to be come visible, then they were fixed.I'm crying as I write this and I can hear your screams over the net as I say My pain scale based on the common persons 1-10 starts at 8,my normal 1. I'd love to be able to help you medically but the powers at be in the Autism Societies see no use whaterever in admitting that several High-Functioning Autistics exist (50-60)since just by admitting that their whole foundation would be rocked Thus,they might loose their funding and creditability as all they have ever advicoated is a group home at 18. If the Key could be discovered of why we don't feel pain and the discovery and associated developments could be appilied to ClusterHeads, just think of the possibilities! With Deepest Regards, Rich For more information on my lack of pain I have webpage on America on Line called The Red Shadows
Rich Schull <>
Columbus , Oh USA
Tuesday, October 03, 2000 at 19:05:06 (EDT)

I can't believe my good fortune in finding this site. I am a female and have suffered with cluster headaches since I'm 22. I'm now 49 and the headaches are thankfully subsiding but I still get them, especially with the change of seasons. Indocin works well for me. The 75 mg. SR is good when I m really in a bad cluster period and the 25 mg. works faster on the pain but is not as long lasting.
Ruby Marlowe <>
New York, NY USA
Tuesday, October 03, 2000 at 15:47:06 (EDT)

I've suffered from cluster headaches on and off since I was 16 years old. I just turned 32 and this year is the worst ever. This site has been great - just knowing I'm not alone. Thanks.
Debbie Clark <>
Richardson, TX USA
Tuesday, October 03, 2000 at 15:19:59 (EDT)

I have not been diagnosed with CH, only migraine. But so many of my symptoms and medications match what I saw on the message boards that I decided I must belong here. Sanset works for me for some symptoms but I have others that seem to respond to nothing.
Barbara McNatt <>
Maple Valley, WA USA
Tuesday, October 03, 2000 at 15:16:27 (EDT)

Hello! It nice to see a web page on Clusterheadacks. I have been a suffer since I was seven (now i'm 33) I know all to well what it like to have one. ( intense pressure behinde one eye down the back of the neck, nose runnig, vison blured, sweating, and just want to be left alone to die. The only thing that I have found to help some is to have a/c vents on hight and breathing the cold air. (doctor showed me that one) it helps. I wonder how many are suffering and really don't know what wrong with them. It took twenty three years before i found out that i was a suffer. Have a good day and remember to keep your sun glasses on when driving.
Bill Walters <>
Effingham, il USA
Tuesday, October 03, 2000 at 14:13:12 (EDT)

wow. I have had these things since I was about 10 (almost 30 years) and everyone called them sinus. Its nice to know why sinus medication usually didn't work. They come and go, sometimes years in between, sometimes just months, and they are back again since Friday. When I was a teenager and was driving with one, I remember thinking "If I just turn the carwheel a little to the right, I could hit that telephone pole and the pain would go away". Since then, thank God, I have realized that no matter how bad the pain gets, it will go away sooner or later (although I can have ones that last 4 to 8 hours). When I was pregnant, I would not take any medication, so I would take a very hot shower and let the hot water pour on my head, or use a skillet with boiling water and place a towel on my head and take a "steam bath" inhaling the hot vapors. Those helped a little. If it got really bad, I would go to the bathroom and try to make myself retch--a lot of times if I did that hard enough, I could feel the pressure behind my eye start to drain and then I could rest. I can't believe there are so many others who have to deal with this pain. Maybe if we got a celebrity to take up our cause, we would finally have someone take it seriously and get some research money into cause and treatment! Thanks for this board--I have already gotten a few new ideas to try.
Teresa <>
Tuesday, October 03, 2000 at 11:04:31 (EDT)

OMG! i am not alone.... here i am reading the testomonials from your start page, literally balling like a baby. I havw been suffering for 6weeks with this episode. It usually never lasted more than 2 nights. My problem now is finding a dr to help. My family dr couldnt find anything, 2 yrs ago i was diagnosed with a sinus infection! Now I KNOW it is a real problem that isnt all in my head. THANK YOU!!!
Lynn Bozin <>
olmsted twp, oh USA
Monday, October 02, 2000 at 12:13:07 (EDT)

Hi, I'm sorry to hear of everyone's bout with their headaches right now, I feel that mine are returning. And I as many others feel this could be due to the weather changing. I have had migranes for about 12 years, I'm 41. I thought I had tried everything as many as 9 medications at one time to control them they were so severe. I am a bit discouraged at the results I saw on the percentals that were posted after taking the poll. Doesn't seem that much of anything new has come available. But as I can see I am not alone in knowing there is not much for us to do. I had a migrane for about 6 months I thought like someone else had posted they had forgotten me but alas they have not. Though I hate the thought I do believe I will have to go back on the inderal, I wish I could take the indicene with it because that was most effective as a preventive. Only thing is the indicene was eating up my stomach. I don't like it but the preventives are better than the quick cures, I don't like the side effects of those, I've tried imitrex, maxalt, and amerge(which for me works the best if I take it right on the onset of one). Hopefully this season won't be so bad that I wind up in the ER, which I have many times in the past. And like everyone else they did cscans and every other type of test on me they could think of. Hopefully they will soon come up with something that will take us out of the living hell we have all shared. Best of luck to all of you!
Patti Klein <>
Oklahoma City, OK USA
Monday, October 02, 2000 at 00:43:45 (EDT)

hi,I am during C.H cycle again(August~now), last one is in April~May 1999,My doctor let me to take a MRI brain photo.she told me that C.H sufferers's brain's position is lower than others inside head.
Kaedar Ferng <>
Taipei, Taiwan
Monday, October 02, 2000 at 00:19:29 (EDT)

I'm not sure what I have but it is the most painful thing I have ever experienced. I would get them only in the spring, usually from Memorial Day, and suffer until Mid-July. This year is different. This year the headaches struck late August and tortured me until the end of September. Since these are the times when pollen is at its worse I figured it was sinuses. Now I see the symptoms here and I have had every one. Here's an extra one I'd like to add. In the middle of an attack, which always strike at about 2AM, I can feel a very rapid pulse on my right temple, and even a more rapid pulse on the top of my head on the right side. What is scary is the pulses in my head seem to be twice to three times as fast as the one on my neck. I was beginning to think I was preliminary stages of a stroke. I look very forward to hearing about anything that can prevent these headaches, or stop them when they happened. Sinus strength aspirin used to work, but not so much anymore. Its like these headaches build up an immunity. Temporary relief for me are hot towels, as hot as I can stand them, on the part of my head that aches. I look forward to hearing about options.
Brodie Mack <>
Newburgh, NY USA
Sunday, October 01, 2000 at 20:42:27 (EDT)

I've had cluster headaches for about 15 years. I just wish the insurance companies would recognize our need for medication, (imitrex injections) for me.I just spent $225.00 for four shots. I think I get most of my headaches worrying about where I,m gonna get the money for my next scrip.
Kelly Slominski <>
Detroit, mi USA
Sunday, October 01, 2000 at 20:11:47 (EDT)

My husband has just begun getting these types of headaches again for only the second time. After reading this site, I have learned that he suffers from cluster HA. I was very scared after watching him go through these bouts for the past two weeks...they have gotten progressively worse. I am releived to know that he isn't going to die! It has been very scary. Thank you for this web-site! I hope it can help him in the future.
Tami Yamaji <>
Chicago, IL USA
Sunday, October 01, 2000 at 04:08:00 (EDT)

I have had CHs for about 15 years.They don't seem to be as bad as the ones most of the others i have read about on here have.The beast shows up about every 3 months,a couple times a day for about a month.Mine seem to only last about 30 to 45 minutes. I don't think I have ever had a 10,but I have sure paced and rolled on the floor alot.I've been lucky lately just had a few.Thanks for the site its a great place to turn to
Allan Webb <>
tn USA
Sunday, October 01, 2000 at 01:09:00 (EDT)




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