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


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This is a very nice sight, i'm very thankful to find it.
Chris Heath <>
Boutte, la USA
Tuesday, February 29, 2000 at 17:41:15 (EST)

I have had these monster for 14 yrs.. I wont go in to detail about my CH, I think ever one here has open your eyes to Ch. I did find something that works and helps me, its a bad thing but the pain stops thats all that counts. When my Ch get so bad i wish i was dead i inject cocaine I hope i spelled this right if not (COKE) it seems to num the pain. I feel sorry for all you folks out there that have to deal with these monsters like me. I feel like im ready for death i not sure how much more i can stand. Please no should not try to go the route i did its very unsafe, I have never been a drug user myself till that past two years i tried it and it seem to help.. Well i wish you all the luck in the world, and pray doctors can find away to stop them from entering your life.. Good Luck Chad
Chad M. <>
Austin, TX USA
Tuesday, February 29, 2000 at 16:12:39 (EST)

Hi everybody, itīs very fine to find people with similar problems that I suffer, but I wish to to all of them painfree life. I found here in the guest book a lot of sufferers from US, UK or some other english spoken countries. Would be very nice, if anybody contact, whoīs from middle or eastern europe. You really cannot imagine, how many problems would you meet, if you visit here tho doctor and you try to explain him why you are there. The first what heīll do is to let you feel, you just want to simulate. Really, itīs not nice. Then he would start to do some investigation and you never know what he found out. Even worse it is, if you donīt know, you have CH. It torture. I havenīt found any doctor, who could explain me why are my pains so strong, why I suffer just occasionaly, wohyt should I do to avoid this pains, which treatment is good enough for me etc. This is the reason, Iīm so glad, I found this page. Now I know a lot of about my problem, but could anybody write me ( if there is such survey ) if these pains will last forever or they use to give up ? Or if is there some survay according the best diet, to keep you painfree. Or what else to do, if you are already in the middle of your attack, to donīt break your head or the furniture - without using imigram, or similar. Further, I would like apologize for my poor english and kindly ask you to contact me if you know some answers on my questions or just contact me. Thank you all.
Boris Bilsky <>
Ruzomberok, Slovakia
Tuesday, February 29, 2000 at 10:58:38 (EST)

Hey! This is my first time to visit your website. I have "enjoyed" Cluster Headaches for around 7 years. The only help I have found during a headache is to get into the shower and turn it on ice cold and let it hit right on the spot and numb it. I hope this can help some of you that have never tried this form of relief. I currently take Lithium and will start on prednisone with the Lithium at my next cluster. Good Luck!!
Trent Pierce
Apex, NC USA
Monday, February 28, 2000 at 20:27:32 (EST)

Hi! I was diagnosed with cluster headaches the same time I was diagnosed as"clinically depressed". So I am on Zoloft,but my headaches are still here.I was good for a while but this yer they cae back, and much worse than before!I now get them in my sleep.The Dr. gave me medication for migranes, but that is ot what these are. I now realize that my headaches are still cluster.Someties I just want to take ANYTHING to get rid of the pain.No one here understands the frustration of not being able to get rid of the pain.Thank-you for this site,I hope I can find some help here.
Cathy <>
Lake Wales, Fl USA
Monday, February 28, 2000 at 18:50:14 (EST)

This is the best website I ever found! I feel like I found a family. Too bad it's one we'd rather not be in. Hope the pain will go away,
David Smore <>
Fairfax, VA USA
Monday, February 28, 2000 at 18:26:28 (EST)

Well hello everyone, yes i finally found your site and what a great site it is. As you can see im from Australia and cluster headaches are still very much in the dark here to a lot of our doctors. I am the wife of a sufferer and this site is a great place for me to find out a lot of information on this terrible condition. I have printed up a lot of the information and put it in a folder to take with me to the hospital when we go ( been 3 times in the last 10 days!) for the doctors to maybe read if they get stumped, which they do most of the time. If anyone would like to get in contact with me please feel free to do so and I will look forward to it. At the present time Rob is using oxygen and prednisone which has worked in the past but doesnt seem to be helping this time. At the hospital Rob was given morphine, (after wht seemed like forever), the visit this morning he was given imigren (spelling) and that seemed to get rid of this cluster, but like we all say we dont know wht tomorrow holds until tomorrow comes. Thanks for being here as a sufferers wife I now feel I have someone to talk to. thnx :O)
Karen <>
Brisbane, QLD Australia
Monday, February 28, 2000 at 05:47:47 (EST)

This is a message for, go to or go to AOL " create a chat " & create a room called "CH chat". Hope this is helpful. : {)
Tucson x 2
Sunday, February 27, 2000 at 22:05:33 (EST)

I would like to chat with other people that suffer with cluster headaches. I would like to chat with other people that suffer with cluster headaches.
Linda Parks <>
Irving, Texas USA
Sunday, February 27, 2000 at 11:09:56 (EST)

I have suffered CHs since 1983 - always left temple/left eye. Duration are from 5 to 12 hours depending on how soon and how much meds. I get. Emergency room visits were humiliating and frustrating. I carry a tote bag of meds with me where ever I go. Each new med. becomes less effective over time. I've gone through 250mg of Prednisone a day to Imitrex injections, Maxalt, Singulair, Migraine meds. Depakote, Eskilith, Lidacaine spray, and a host of others. Best ER visit meds was a cocktail of Phenigran, Turadol, morphine and Delato sometimes interchanged with IVs of Demeral or Stadol. I've had Ganglione blocks and Botox injections. The practice of Medicine - quess they're practicing on me. My health has suffered and my carrear from these cycles. Medical expenses are a burden too. Prayers, yes prayers seem to do the most good. Even if I'm still a CH patient I at least am thankfull for the good days that God provides. After reading "what a baby" (3/11/98) on the Neuro Harvard CH Site I avoided that site and further ridicule. However I am not insecure and realize that life is unfair sometimes. Your compassion may not eliminate pain, but it does lift the soul. Humanity would benifit greatly from more person like you. Please do not lose this quality trait when thinking of the responder of "What a Baby" We all deal with pain in different ways and some want to lash out and hurt others. The Lord forgives and so do I. He also did make a few ggod points. I can take critisism and advise without devastation. As far as my CH's go I'm still chronic eposodic Depakote and Eskilith as preventives and Stadol NS and Oxycotin for pain when needed. Emergency room visits are not as frustrating now since the staff know me now and what to do when I arrive. I believe the preventives have helped in 8 out 10 attacks to lower the severity of pain, but sometimes as we allknow - sometimes nothing helps but unconsiousness. And for me that's hard to achieve since most of the narcotics I have been given, keep me awake rather than put me out. Again thank you for your response and may you be blessed with Christ grace, love, hope and peace. Dave
Dave <>
Beaufort, SC USA
Sunday, February 27, 2000 at 04:12:25 (EST)

Hi! It seems as if I've just been allowed entrance into the exclusive world of Cluster Headache Sufferers. At least, that's what my physician seems to think. I can't say that I'm all that thrilled about joining, but it's good to know that there are people out there who actually DO know what seems to be pounding around in my head at times.
Greg <>
Charlottesville, Va USA
Saturday, February 26, 2000 at 19:17:15 (EST)

Thank you for this wonderfull Website. If got cluster headache since 1995 and it was very dificult for me to find good information here in Spain. I learned a lot with your Site.
matias nieto <>
madrid, spain
Saturday, February 26, 2000 at 17:38:58 (EST)

I've had clusters for 12 years. Had relief with lithium but docs refused to prescribe any longer. Started topamax 3 days ago. Hope it helps. Anyone had any success with topamax??? Side effects??
Russell Restauri <>
Warner Robins, GA USA
Saturday, February 26, 2000 at 17:01:58 (EST)

Excellent web page. I've been dealing with these for about 10 years now. I recently looked up cluster headaches on web site and asked Dr. about sumatriptan. Dr. prescribed imetrex nasal. This was the only thing that has releived these blasted thins. I used 2 dosages/ day. Ran out, so went into refill prescription. Health Net insurance denied my prescription even with Dr. "Urgent pre-authorization". This has us baffled. Health Net advised me that the FDA only allows 1 box with 6 total dosages per month (only 3 days worth. I know that this is wrong because DR. and pharmacist have told me that there is no FDA maximum per month allotment. In a world of hurt here. Frustrated... do you all get your imetrex paid for with your health insurance? If so, how much can you get / month. This is too long and feel like I'm gonna get slammed pretty quick here. Take care... any body that has info. on how to get more than 3 days worth of imitrex/ month let me know (please, Id appreciate it.) since I was about 1
Imitrex Boy <>
Julian, CA USA
Friday, February 25, 2000 at 16:19:31 (EST)

I was diagnosed with cluster headaches about 10 days ago. I am 24 yrs old and have had migranes my whole life, but these headaches are more painful then anything i have ever felt. I got to spend sat. night at the er in a dark room and on a hard cot. This really sucks. I was wondering about what is going on with my eye when ever i expereince on of these little monsters. It is runny and droopy.. i read about it in on of the links but i was wondering what makes it permanent..who that happens to, and what if any should i do since it is definently a symtpom of these headaches with me, and theyre bad enough-i don't want a permanent eye problem as well. ive been trying the water treatment- i hate the pedisnone/cortisone stuff it didn't help at all so now im just drinking h2o until i get to go back to the doctor next week. it is nice to know im not alone.
Tina <>
tempe, az USA
Friday, February 25, 2000 at 01:57:02 (EST)

What a surprise! I have suffered with cluster headaches for nearly 30 years. Until today, reading these web pages, not a single person in my life has understood what I was going thru. I never heard the term "Cluster Headache" until 18 months ago. I have been treated for every kind of sinus disorder, including surgery for years. I find it a somewhat emotional experience to discover there are other people out there that have this same problem. This last month was my first experience with imitrex. A true miricle, I almost cried. Then I found out the price of the stuff and did cry, ha. I am celebrating today as I have just come to the end of my usual 4 week, twice a year fight. Life is great, and a lot better when the creature has let me loose. I tried the "water treatment", I think some benefit was gained, but had to move my work station into the loo. Great to hear your stories. Jim
James Miller <>
El Dorado, CA USA
Thursday, February 24, 2000 at 19:18:12 (EST)

I only got diagnosed with cluster headaches last year after having them for ten years.Luckily I can go 12-18 months in between attacks,they can happen any time of year,last for about a month and I mostly wake up with them although I sometimes get them several times a day. The doctor has put me on Imigran[Sumatriptan]nasal spray which takes the pain away in 10 minutes,but because I can only use it twice a day at the most I have to wait to see if the attack is going to be a real headbanger. I'd love to be able to take something at the first sign of attack but sometimes they turn out to be not so bad and then I would'nt have the spray there for the real corkers.
Dave. A. <>
Yorkshire, U.K.
Thursday, February 24, 2000 at 15:41:33 (EST)

Greetings, I havent posted in about a year...and that time is approaching...the headaches, if they start, will be around March, April....Im keeping an "eye" out for them...(no pun intended)...My preventative (Amytriptiline) was increased last year from 25Mg to 50Mg every this year I will know if will work, and I carry with me the aportive meds at all times, getting ready for them. Laters. Joe
Joe Cavazos <>
Houston, tx USA
Thursday, February 24, 2000 at 11:44:00 (EST)

im back i hope i can help. i read all these stories and get the chills. its me all over again , every instance.i have to be able to help . i have alot of answers.the cycle im in now is almost get through i used cafergot sups and vicodin with a ninety% percent pain free third caf sup before bed let me sleep through the night another one third 8 to 10 hours later.then repeat till cycle ends, using pain med in have the basic depression and ill feeling from the meds but less to no pain.i too was a gunea pig for years and the cycle did not end for 5 yrs up to 8 attacks per day .lost every thing several times over been told its all in my mind be a man .you name it ive been through it .from a to z with meds and research centers tests.if you look down a few comments you will see causes and intensifiers of this condition if you need help feel free to email me.ill be back
kane <kanecd5>
monson, ma USA
Wednesday, February 23, 2000 at 18:25:57 (EST)

I have had C.H.'s for about 16 years. I get them every 4 years (leap years!), and I'm in the middle of a cycle right now. My headaches are always on the left side, pretty severe, I get on avg 3-5 a day. I have recently discovered that if I dont sleep on my left side, I dont get the headaches at night anymore. I know, easier said than done. I'm also on Verapamil. Just yesterday, I started using a Vicks inhaler in my left nostril, If I use it quick enough, the headached is not severe at all and quick to go away. Hope this helps some, will check back frequently.
Steve S. <>
Harleysville, PA USA
Wednesday, February 23, 2000 at 09:59:49 (EST)

do nots of clusters.when in not use perfumes ,colognes, air fresheners ,room deodorizers, carpet deodorizers ,strong anti perspirants,detergeants,bleeches,household cleaners,scented candles,inscence, ect... do not stay around strong inks,gasoline, exhaust fumes,paints,stains,urethanes,insecticides,bodily or industrial ect...prolonged exposure off a week or two will start a imagine everyday exposure life style change is needed.when in a cycle avoid all this and do not eat or drink these things carbonated and alchoholic beverages,lots of chocolate,tomato related sauces,heavey cheeses,foods that make you at all regular times,do not skip meals.after a meal do not sit right down ,take a onset of an attack do not sit,get up,i have got to go ,will be back,does this make sense to anyone? no time for denial. bye...!!!
kane <kanecd5>
monson, ma USA
Wednesday, February 23, 2000 at 09:33:42 (EST)

i have suffered clusters for over 25 years. i lived in colo. wyo. texas,alaska &north dakota. in any given state i've had them in the spring,in the fall,in the summer and in the winter. this info is for people looking for light in relation to the sequences of clusters. i was a guinia pig for doctors across the country and nothing worked, untill ,quiie by accident, i discovered bluecheese. the salad dressing worked,but latter i started putting a plug under my tongue at the first sign of the cluster. this not only gave relief but sometimes blocked the cluster completely. this was helpful but still i couldn't be productive in life for 2 to 3 months a year, untill, i discovered cider vinegar. at the first sign of the cluster, i would put a plug of blue cheese under my toungue and rub cider vinegar over my arms and chest and low and behold no cluster. i have been able to drive my rig and have had no major attacks as long as i get to the cheese and vinegar at the first tell tell sign. i hope this gets out to others as i would like to know their results. i have more information as to what helps if interested. travis
travis unsell <>
montpelier, nd USA
Wednesday, February 23, 2000 at 07:07:27 (EST)

I have just stumbled upon your site whilst researching excursions in Ibiza for my degree course. I have suffered from cluster headaches on and off for the last few years. I think its due to being on the computer for too long and generally just having too much work to do. If there is anyone else out there who agrees with me then it would be great to be told that i'm right. (It might save me another headache!) Just keep on smiling and everything will be ok.
Sarah <>
Chester, England
Wednesday, February 23, 2000 at 05:23:30 (EST)

Hello, I am new to this site. All I can say is God help us! If anyone is up right now and wants to talk let me know. Would love to talk to others who have this relentless excruciating pain. Regina
Wednesday, February 23, 2000 at 02:36:12 (EST)

I am interested in the water treatment - I am not sure whether I have to come off my medication in order to try the treatment (I'm assuming so. Can anybody who has tried the water treatment please e-mail me with some information. I would be very grateful.
Robert Goodwin <>
Essex, UK
Tuesday, February 22, 2000 at 16:42:37 (EST)

i am also just finishing a 3 month get through the cycle i use ergots profalacticly. i was with the least pain/cycle in 15 yrs. i have alot of wisdom regarding this topic. it all stems to everyday chemical exposure and the digestive tract.i could go on and on. hope this helps someone out there.goodluck clusterheads
kane <kanecd5>
monson, ma USA
Tuesday, February 22, 2000 at 16:27:59 (EST)

i do know that prolonged exposure to any strong chemical odors brings on a 3 month cycle for me. this includes cologne usage air fresheners ect... get rid of everyday chemical odors and you will get better soon. 15yr sufferer.
kane <kanecd5>
monson, ma USA
Tuesday, February 22, 2000 at 16:10:28 (EST)

I'm currently in the middle of a Cluster. Once again it takes control of my life not allowing me to feel free because everytime I try to go about living I have an attack. I have been on so many drugs, Prednisone, Sansert, Verapamil, Imitrex Tabs, Inderal and Oxygen. Every time I'm put on a triple combo the these drugs in an attempt to control them. Sometimes it work and sometimes it doesn't. I so glad that I found this site and reading the other postings I feel like I'm reading about myself. I thank you for this site and hope it can help not only myself but many others suffering from this Chronic Condition.
Michael D <>
Lombard, IL USA
Tuesday, February 22, 2000 at 09:02:15 (EST)

I've suffered from cluster headaches for 15 years. I get them all through the year. I find fiorinal and zomeg very helpful
joel cornfield <>
thornhill , ontario Canada
Monday, February 21, 2000 at 20:46:05 (EST)

This is my second (maybe third?) bout with these attacks (I refuse to call them headaches). This cycle started in Jan. and have gone on for over a month. This is a frightening experience (as you all know), I'm currently using Imitrex (though it makes me feel lost and confused), siebilium (similar to verapamil after it stopped working), oxygen (thanks to this site) and water. None are perfectly successful. There are days when I only have one attack and others with 6-8. I can't work, hardly sleep, no interest in sex or eating it has taken over my life. My last cycle ended in early Sept, so my relief was only 4-5, anyone else out there like that?
Cory Papineau <>
Winnipeg, MB Canada
Monday, February 21, 2000 at 17:02:45 (EST)

glad to have found your site, have suffered from clusters for 21 yrs. thot i was alone in misery, never having found another person with them. will visit often.
Jerry Wilhelme <>
Appleton, Wi USA
Monday, February 21, 2000 at 13:20:48 (EST)

I am still exploring - not sure whether I have classic migraines or clusters - I've been told mostly migraines but many of the symtoms of clusters are the same.
john portner <>
stockton, IL USA
Monday, February 21, 2000 at 10:27:43 (EST)

I've been suffering with clustrs for 15 years. They started when I was about 35 years old. Six years ago a friend who also suffered from clusters, but outgrew them told me about OXYGEN THERAPY. It's the miracle drug. If you suffer from clusters and haven't tried it, you must! Inhaling oxygen as soon as the headache begins has in my case eliminated the headache within minutes. Oxygen tanks can be rented at most health supply and welding supply stores.You will be so thankfull that you tried it.Using oxygen during the headache in my case helps to diminish the pain and shortens the length of the episode.
Allan Ellinger <>
Guttenberg, NJ USA
Monday, February 21, 2000 at 07:22:32 (EST)

I feel your pain! We are all in the same boat. Oxygen,Imitrex,Verapamil,... all used at one time or another during cycles. If any of you are not getting help from Dr., ask to be referred to a Neurologist, was my life saver! First person to diagnose my CH's, went through a whole battery of tests(CAT scans,sinus,spinal tap,etc...). Within one visit to Neuro, got relief. Good luck to all. Hang in there, remember cluster chat. Pop in sometime as I am constantly in there checking in on all of you (nickname in cluster chat..KingOfPain).
Tucson x 2
Monday, February 21, 2000 at 00:55:11 (EST)

Wonderful site. I have learned alot from reading the other posts here. Thank you all for sharing your thoughts and experiences. This site is deffinetly getting bookmarked into my favorites! I know there's strength in numbers...I already feel that just visiting here for the first time.
paisley <>
seattle, wa USA
Sunday, February 20, 2000 at 22:13:45 (EST)

i have suffered from cluster headaches for about 5 or 6 years now did not think that i would ever find anyone who knew about the hell we go through
robert alan page < >
worthing, w.sussex uk
Sunday, February 20, 2000 at 20:00:08 (EST)

So they say I'm allergic to deisel fumes and fatigue. I'm a railroad conductor who works on locomotives for a living and it used to require me to spend long periods of time at work and away from home. I guess you could say I fit the description. The Important thing is that Michigan Headpain and Neurological Institute in Ann Arbor Michigan (MHNI) is responsable for my recovery. Dr. Joel Saper and Dr. David Gordon are the ones to thank for my incredable recovery from those atomic explosions in my head. I am on a host of medication as a result but I thank God for the people in my life that helped me through those satanic times. Good Luck and if you need a cure for clusters...Iwould strongly recomend MHNI. P.S. All the other Doctors and Staff there were the best of class including and not least Dr. Alvin Lake who talked me out of doing myself in so many,many times. Thanks Everyone!!!!!!
Mark Loucks <MLo6984328@aol>
Lakeport, MI USA
Sunday, February 20, 2000 at 18:37:35 (EST)

I have been having CH's for about two years. Until recently, I thought they were "sinus headaches". Imitrex stops the pain, but makes me sick. Midrin works fairly well. So far I have had only 3 or 4 seriously painful episodes. Right now I have almost daily episodes of moderately pain, which the Midrin usually relieves. I also have a strong sensation of fullness and pressure behind my left eye and swelling of that eyelid. I believe that cigarette smoke and blowing dust contribute to my headaches.
Kimberly <>
Sunday, February 20, 2000 at 13:53:31 (EST)

CH sufferer every fall and sometimes spring for the past 10 years...the beast is back :-( The information on this site will be of great help in finding a new treatment as my old faithful, Ercaf, does not seem to help anymore. Thank you.
Greg Gallo <>
Brighton, Mi USA
Sunday, February 20, 2000 at 11:38:22 (EST)

58 year old. Have suffered with clusters since 1983. Have been going to the Baltimore Headache Insitute for 15 yrs. They have helped me a lot, but they keep coming back i never know when.I've taken a lot of different medication some helped some didn"t. At present i"m taking Verapamil and lithium. I'm convinced diet has a lot to do with them if you are in a cycle.
Glenn Peterson <>
Chewsville, md USA
Sunday, February 20, 2000 at 07:40:01 (EST)

ihi i am a 26 year old i have migraine's i have them for all most 6 years they just try a new med on me and it is still now working they are sending me to a headache specialists but they cant get me in until march 14 when i get them it does not go away for 3days i get 3-4 a month i just hope they can find something for me
Jannette <>
shamong, nj USA
Saturday, February 19, 2000 at 23:26:44 (EST)

Hi! I have suffered from cluster headaches for 15 years and went undiagnosed for 9 years. The biggest problem I had was that I didn't fit the "profile" for a cluster headache sufferer. I am female, started getting them when I was 20, so "young", non-smoker, non-drinker, completely the wrong type. Now that I have been diagnosed, I still can't find a dr. who will give me medication to actually help alleviate my symptoms. The dr. I have right now gives me migraine medication saying that it should help. It doesn't, it sometimes makes them worse! What can I do? It is very hard on my family when I go through my "cycles" and I now think that my 10 year old daughter may be getting them. Thank you for letting me vent. I hope to talk to some of you, because I really need to know that there are others out there like me!
Maureen <>
Grass Valley, CA USA
Saturday, February 19, 2000 at 19:37:23 (EST)

I am 52 and I cannot believe there are so many people out there suffering like me. I have had CH for about 9 years now and mine are now CHRONIC which means I have them all year round - they are not seasonal - they are with me permanently and never go away. I am sick of having 'no social life' half the time I'm frightened to go out in case I have an attack. I carry my injections around with me all the time and panic if I realise I haven't got them or have only one left and its the weekend!! I have bashed my head against the wall, sat with frozen peas on my head, I usually bury my head, sit in the garden at 3 o'clock in the morning (snow, rain,hail - I don't give a damn) the neighbours must think I'm nuts or something, its a wonder somebody hasn't had me certified before now. I have even put ice packs between my legs (yes there!!) to try to inflict pain somewhere else. I have tried oxygen, I've been on Verapamil for a couple of years but now they are useless. I am now taking Lithium but am not really happy with it. I cannot drive for a living anymore because I now get attacks during the day as well - in fact I get them anytime, anyplace, anywhere. I cannot tell you how much I am sick of them. I have often felt like jumping out the window. My wife is sick of seeing me holding my head (thats not to say she doesn't sympathise - just feels helpless). I cannot count the number of times we have sat down to a meal in a restaurant and then BANG on it comes and I have to make a sharp exit and then NO APPETITE LEFT - the meal is ruined - another useless night out. I just wonder whether my life will ever get back to some normality - its more of an existence then a life. I try to occupy myself as much as I can, I'm frightened to sit down and relax - gone are the days of sunday lunch with a couple of glasses of wine and then a snooze. My wife wants me to give up smoking - how can I - I can't drink, can't sleep, can't go out, I'm not much interested in sex anymore now either - what is there left other than smoking - its the only thing that keeps me sane (well sort of sane anyway). So if anybody has anything to say which might give me (and my wife) some hope I would be pleased to hear from them. Sorry to go on but it helps.....
Robert Goodwin <>
Essex, UK
Saturday, February 19, 2000 at 10:29:59 (EST)

I have suffert for CH in 10 years. I have an attach now, but i am not afraid for it any more, because injektion with sumatriptan (imigran) take the pain, almost at once. I have just read about the water treatment and i will try it rigt now.
Uffe Holst <>
Odense, Denmark
Saturday, February 19, 2000 at 07:57:14 (EST)

After being diagnosed with Migraines which in and off it self took 10 yrs., i now also know that i have clusters. I have not slept through the night for months. Every winter i am up every night with clusters. The only thing that seems to help up to now is Afrin--but this does nothing for the pain. Im reluctant to imitex every night. The pain is somewhat tolerable but sleep just dosn't happen. I am just starting lithium--we'll see if that helps. I take the usual prevents migraines which does zip for the clusters. We'll see. Supposedly time is on my side and with age they'll subside.
Dan Driewer <>
Port Washington, Wi USA
Friday, February 18, 2000 at 17:32:42 (EST)

I to suffer from cluster headaches and when i get them my doctor who is a neurologist prescribed depakote and lithium it seems to work it prevents the reocurrancse of my headaches after two to three weeks.
john taylor <>
woodstock, il USA
Thursday, February 17, 2000 at 23:24:57 (EST)

Just got back from the nueroligist today and she told me that i suffer from cluster headaches. They started about 4 months ago i did not know what was going on, the 1st couple of month i was using tyelenol to no avail was getting at least 1 cluster headache per night , they gave me steroids and other med's nothing works. Today i got a prescription for some imitrex and some verapamil (calan) hopefully that wiil do the job. After reading around in here i realize that i don't have it that bad compared to most people. I had goose bumps reading some of the messages and litature and i am a 35 yo chief petty officer in the united states navy and that never happens. god bless everyone who has to live with this and hopefully one day they will find somthing to make it stop. bill mcgowan
Bill McGowan <>
new orleans, la USA
Thursday, February 17, 2000 at 16:27:45 (EST)

I was recently diagnosed with CH and began looking today for information and came across this site. I thought I was alone until today! Not only did I finally get a diagnosis but also found fellow suffers. I have had CH for 1 year now. The headaches last 5-7 days with 2-3 months in between cycles. They wake me up at night and just when you think you can bear it no more, they dissappear as quickly as they came. It is comforting to know that there are others out there who know what I`m going through. This site is truly a Godsend for info., and peace of mind. Carroll
Thursday, February 17, 2000 at 16:16:24 (EST)

I just sent 2 notes that are below. I misspelled 2 words below trying to fix my 1st mistake, I did it again! Anyway, PLEASE read my note, I'm not really an idiot that can't spell- just in to big of a hurry! Embarrassed!
Renee Johnson <>
Franklin, Tn. USA
Thursday, February 17, 2000 at 13:13:07 (EST)

Please read note below. Someone out there let me know if I can give out my doctors name. I mispelled allowed! Forgive me! PLEASE READ NOTE BELOW! HOPE it helps!
Renee Johnson <>
Franklin, Tn. USA
Thursday, February 17, 2000 at 13:04:35 (EST)

PLEASE READ!!!!!! Works for me! I just found this great web site and DON'T undertand why I can get help and it seems like no one else can! I've suffered from clusters for 22 yrs. I also have a brother who has them and has been helped also! We both see a neurologist in Nashville and he has SAVED our lives!!! We both take verapamil. I take 6 tablets- 80ml each a day. My bother takes 8 tabs- 80ml each a day. We DO NOT have ANY headaches as long as we take our medicine during our cycle. My brother went to another doctor before this one who didn't put him on enough verapamil! Most doctors don't know enough about them! Our doctor is an expert on them! He even speaks all over the world about them. He said that doctors don't want to put you on enough! I don't understand this!!! I have been taking this amount during my cycles for 5 yrs. now and I'm a very healthy 39 yr.old women. EVERYONE out there please talk to your doctor. Don't give up until you find one that will listen to you! I don't know if I'm aloud to give his name out. I don't know all the rules of this web site. PLEASE feel free to email me! When I first found this web site NO ONE- ONLY you guys can understand the feelings I had! I couldn't Wait to put the info. out there.God, I hope EVERYONE on here will find help! DON'T give up! Renee Johnson
Renee Johnson <>
Franklin , Tn. USA
Thursday, February 17, 2000 at 12:59:17 (EST)

I have suffered from ch for about 3 years now. Pain management is currently where my Dr. and I are at. At least he is trying. My hope is that everyone here will find what they need to deal with this. Thanks for a chance to share and learn.
Jim Bebee <>
Fresno, ca USA
Thursday, February 17, 2000 at 05:38:13 (EST)

I am writing this letter as I sit wondering if my headaches are about to return. It's a feeling you get used to but never get over. Next month I will turn 41 and have been dealing with cluster headaches since approx. 12 years old. Originally I could look forward each spring to that familiar feeling which would trigger something almost 30 years later I still know nothing about. As I entered my 20's the attaches became every second year lasting approx. one month with about a week of hell. It then stretched to three years but broke away from the spring pattern and now I am not sure when they may come. My last bout was in 98 an I actually lasted a little over 4 years from the previous round. The downside of this timespan is that each round now lasts longer and is much more severe! In 98 I went from May 19 until July 11 with approx. 2&1/2 weeks of pure hell. Imatrex, which seemed like a gift from God the previous time, didn't touch even the milder headaches. Prednizone seemed to help block a couple of attaches but when the next one broke through it made me wish I had never heard of the drug. I have managed to get by using a combination of cafergot, tylenol 3, and percocet in numbers that sometimes amaze the nurses at the emerg. ward. When things are really bad and nothing helps, then its off to the hospital for a demeral/gravol cocktail. This is usually around midnight so the emerg. can be an interesting place. My hope is that I will one day outgrow these headaches and as I started my letter, I hope I will be able to forget about those periods when things float around in your head and you wonder if this is it. Thanks for reading my story. P.S. The only upside to this is that I have had some wonderful dreams with percocet and some of them I have even been awake!
L.Kadolph <>
Thunder Bay, OntarOnt. Canada
Thursday, February 17, 2000 at 01:53:49 (EST)

I have been a CH since 1962. twice a year one month duration for thirteen years in Massachusetts. I moved to FL and the attacks went to once a year. I moved to MS in 76 and they have skipped 3 yrs and as much as 5. three weeks ago they came back. they peak out at 6-7 in a 24 hr period. I have been the usual route (librium, valium, fiorinal w/codiene} etc. Quite a few yrs back I heard the term histamine headaches so, I immediately bought some anti-histamine tabs. Well,after trying different brands I found Comtrex allergy and sinus tabs. The package says no more than 8 in 24 hours. the dosage is 2 tabs. I take 2 every 4 hrs for 8 hrs 6am 10 2 and 6pm. taking more than this can cause liver problems. my dosage may be too much but, I can function at work headache free. I still get them between 11pm and 1am 4am and 6am. I got one today at work approx. 9am but on a scale of 1 to 10 it was a 4 and I can easily tolerate lasted about 10 min. I am now on the receding part of my attacks and should be done by the weekend. Hopefully, they won't return again or at least stay away for three yrs. I honestly wish I was the only person with this affliction as I, like many others, would not wish this on anyone. sign me another CHr.
Thursday, February 17, 2000 at 01:01:05 (EST)

I'm so glad I found you guys. I have had ch's for 22 years now, started @ 17. Wasn't diagnosed until I was 24. Since then....I have been to Neurologists, M.D.'s, Orthodontist, Chiropractor, Acupuncturist, Optometrist, Physical therapist, Psychiatrist, Dentists, Alergist and the University of Texas Center for Pain Medicine. Haven't been to a Proctologist, but I'm not ruling that out! I've had Cat scans, dental retainer, glasses, even had my wisdom teeth cut out just to see if that would help. Med's...Lithium, Fioricet w/codiene, Darvicet, Sansert (until I was recently diagnosed with a heart murmur), Inderol, Oxygen, Imitrex (there is a God), Claritin, Lidicane, lots of others. Don't know the cure, but I would suggest you try everything short of the gun (almost did that myself). The best advice I can give is... find you a doctor who will give you the relief you need to get through the tough times, and come back to this site to find out what will help you control the beast. From what I have read here today, it seems that what works for one person may or may not work for another. I plan to try every remedy posted. There is relief out there, I just know it.
Rick <>
Houston, TX USA
Wednesday, February 16, 2000 at 23:10:34 (EST)

Hello.I started getting these headaches, outoff the blue at christmas 1997.I have not as yet bieng told by a doctor that i suffer from CH.But by reading this site, it has hit me that this is what I suffer from.(thank god for helping me come across this site by accidant)
Bryan Brady <>
cavan, Ireland
Wednesday, February 16, 2000 at 22:01:02 (EST)

I was diagnosed a few weeks by a Neurologist for Cluster headaches. Ive had them since the 1st week in January this year, getting them 2-3 times a week for about 6-8 hours. I still have discomfort now but they have eased off in the last few weeks. The last attack before these was 5 years ago. The only thing that seems to link the attacks five years ago and the attacks at present is that I am doing Night Work. I think a combination of stress and a mixed sleeping pattern has something to do with these attacks. Have any other sufferers noticed the causes I have underlined
P.Conroy <>
London, UK
Wednesday, February 16, 2000 at 18:54:16 (EST)

Can I please join this club.My CH usually go into recession after about two weeks for a year or more.This time they were a Christmas present I still have.I'm of to aconsultant Neurologist on Friday.Will report the findings.I am on naratriptan hydrocholide at the moment but you are only allowed a maximum of 2 a day.Thank goodness I am over 60 or the cost would be prohibitive.All the best to you all.
Trevor Carpenter <>
Louth, UK
Wednesday, February 16, 2000 at 17:24:21 (EST)

I'm 25 and have been going to a doctor at Duke for what we think is a long lasting side effect from Reglan. Ever since I took this medication I've had headaches and I been also suffering from depression. I just went to the doctor again yesterday and he prescribed Depakote. I've read some articles and some people have been prescribed Depakote for depression. The doctor yesterday told me this was for the migranes I was having. Which is it for, depression or the headaches? I've got this phobia now about taking medication and I want to know everything before I start taking something. Please help!
Hope <>
Columbia, SC USA
Wednesday, February 16, 2000 at 11:35:24 (EST)

I had my first cluster headache episodes back in 1993. I couldn't figure out what was wrong with me. As an insulin dependant diabetic, I thought that I was suffering from a diabetic complication. When they would occur I would let my doctor know what they were like and they never seemed to have any answers for what it was. I went through CAT scans and several emergancy room visits. Mine used to come twice a year for about three weeks, but they had remitted for about the last two years. I thought that I had grown out of them, but they returned about five weeks ago and have been regular ever since. "Luckily" though this was the first time that I had ever been diagnosed with cluster headaches, which I had never heard of before. I have Imitrex, which I consider a miracle drug, and have recently just started taking CALAN SR tablets after my doctor realized that Indomethacin wasn't working for me. The arrival of these have come at the worst time, since I'm about to be married in the next two weeks and have had problems focussing for it. I do have to say I'm greatful for at least now knowing what I have, and that finding this site made me feel like I wasn't dying of some bizzare nuerological illness. Here's hoping everyone has a good night's sleep.
Mark Wilson <>
Brooklyn, NY USA
Wednesday, February 16, 2000 at 01:24:19 (EST)

I"m a 20 year survivor.Thank God my wife has migraines, or we would be divorced!Only afellow suffer can understand. We are new to internet,we have been everywhere,even to Mayo. Curretly using Tulsa Pain Eval. And Treatment Center. -They have been very very kind and helpfull!!!!! Anyone wanting more info. please Email us at Wordna121059@cs.ccom -We see two different doctors , My wife cried because her DR. [Dr. Gretchen Weineke ],was so concerned about her pain and did not treat her like a drug seeking maniac or hypochondriac. She spent more time with her than any other Dr.,has. She had many different ideas and was not afraid explain any of them. I [phillip], use a DR. Hubert - he has also been very kind and agressive in treating and managing my clusters with apropiate amounts of opiates since I nearly died twice from Nsaid Ulcer bleeds Because my other Dr. who shall remain nameless considered me a nusance because I continue to have chronic pain.
phillip sawyer <>
tulsa, , Ok USA
Tuesday, February 15, 2000 at 22:40:04 (EST)

I have just today been diagnosed with cluster headaches. My doctor was aware of the condition and said it was easy to diagnose, but I have learnt more from this site then he could tell me. Reading the stories of cluster sufferers scares me as much as the pain does. If there are any other new members of this highly exclusive club out there, then please do not hesitate to contact me to discuss.
Daniel <>
Croydon, England
Tuesday, February 15, 2000 at 18:08:20 (EST)

I DO NOT HAVE A COMPUTER YET, SO PLEASE SEND ME ANY INFO. YOU CAN. I have suffered from cluster headaches for over 16 years, so if you can please mail any news and info. my adress is 2392 grand ave. bronx n.y. 10468-6363. thank you very much.
Tuesday, February 15, 2000 at 12:59:09 (EST)

I DO NOT HAVE A COMPUTER YET, SO PLEASE SEND ME ANY INFO. YOU CAN. I have suffered from cluster headaches for over 16 years, so if you can please mail any news and info. my adress is 2392 grand ave. bronx n.y. 10468-6363. thank you very much.
Tuesday, February 15, 2000 at 12:58:32 (EST)

Well here's an update. Im 16, a junior in a High School called Don Bosco Technical Institute. I'm no longer in school. ha what a joke. the doctor thought it would solve all my problems. ohh well. i still fear waking up when i go to bed. Im stil having trouble trying to find a doctor in my area that just doesn't give me tylenol with codine...ha... Does anyone out there know of a good CH doctor in the Southern California Area? I really need to get back to school. It gets boring suffering alone. Sleep is starting not to work at all. Maybe one day I'll get a good doctor that might care a bit to help me. lol is that a bad sign.
Robert Valles <>
La Puente, CA USA
Tuesday, February 15, 2000 at 06:10:41 (EST)

What a relief to hear other stories! My mom is a CH sufferer and so far phenergan and compsine(?) suppositorys remove the headache after about 10 minutes. My mother is still shocked because she is pushing 50 and she thought that she had tried everything. My greatest sympathy to all sufferers, Emily Reed, daughter of a sufferer
Emily Reed <>
Reno, NV USA
Tuesday, February 15, 2000 at 01:23:38 (EST)

I feel for everyone who is out their suffering right now. I'm 23 yrs. old and have been getting headaches for 8 yrs. I've taken all kinds of medication but only two of them have ever worked. One of them is of course Imitrex, but the other is called Sansert(made by Sandoz). I take this as a prevetative medicine. Whenever I feel as if though I am going to suffer from several headaches in one day, I take one Sansert tablet. I take it right after my second headache has gone away. It has proven to be effective for me about 100% of the time. For everyone out there who suffers from several headaches in one day, TRY THIS MEDICINE!!
Orlando <>
Monday, February 14, 2000 at 23:28:35 (EST)

IT WORKS FOR ME! I am 66 years of age and have suffered with CH's since 1983. I have been episodic, chronic, right side, left side, you name it. A number of years ago I was referred to a headache clinic in Encino,CA where I met who I consider the guru of CH's, Dr.Lee Kudrow. I have been fairly successful in controling CH's over the years and have basically stayed with his recommendations with a few changes. The past 3 yrs have been episodic,right side, coming in mid November and lasting til February. I use the following tools: * Food allergy test to determine what foods I'm allergic to and the severity * Oxygen tank and regulator with face mask * Verapamil, 80mg - not slow release At onset of cycle, start heavy dosage of Verapamil, 4 or 5 tablets evenly spaced, throughout the day/eve. Keep up the dosage until you have 5 consecutive painless days. Reduce by 1 tablet until 5 painless days,and continue until dosage reaches 0. During the cycle, eliminate all foods on your allergy list, including ANY alcohol, caffeine, and chocolate. (Addition- ally, oats,tuna,eggs and turkey were major triggers for me.) During the cycle and medication process, CH's will occas- ionally break thru. Use oxygen in sitting position with head lowered @ 7-8 liters per minute. Generally the pain diminishes within 10 minutes or less. Also, there will be times when the dosage you are on won't get you 5 painless days. When this occurs, up the dosage by one. This past cycle I couldn't get past 2-3 days on my 3/day dosage. Dec.23rd I upped the dosage to 5 a day and started decreasing them every 5 days and I haven't had a headache since! Hooray! Remission again and I can enjoy a drink and maybe a piece of chocolate for Valentine's Day! Hope some of this will work for others. Ken Evans
Ken Evans <>
Federal Way, Wa USA
Monday, February 14, 2000 at 01:03:58 (EST)

Ken Evans <>
Federal Way, Wa USA
Monday, February 14, 2000 at 00:26:52 (EST)

I know that this is not the place to do this but I need to have Bill Dotson aka cokamoney2k. to e-mail
Bob Trice <>
fremont, Ca USA
Sunday, February 13, 2000 at 12:42:27 (EST)

Great sight.Thanks to whoever is keeping it up! Just got over beating my head against whatever I could find, pillow, floor, frige, bed post, hot shower, cold air,stearing wheel etc. annything that isn't nailed down. Im 29 had the MONSTER now for 7 years since I was 21. After 2 Doctors 3 accupuncture sessions drugs I couldn't pronounce, let alone spell.{mind my spelling errors[you should see my handwrighting]} I can only come to 1 concluision Im sure everyone will agree there is no cure rite. {F#@%} Its the worst pain anyone could go through, I wouldn,t wish it on my worst enemy! I live on Long Island NY so we LI's see many seasons I don't know if I speek for anyone else, but my episodes don't have a pattern. I'll get them mostly when the weather changes 15 to 20 degrees. Weather it be mid winter or mid summer. I get the MONSTER for 3 to 4 days straight 3 and 4 times a day, then they go away for a week or two, or until the weather changes again. I dont think im cronic but I do get them all year round. My life is misserable with them I can not wait until they go away. I almost cryed when I read some people have them for over 20 Years, last I heard 5 years tops {MY DOC. THANKS}I was wondering why I was overdue. Looks like Im In it for the long haul, i'll just sit and wait, hold onto my bootstraps. Good to know I could Talk to people that can relate what kind of PAIN were all in. If anyone would like they could Email me, it only helps talking to anouther suffer. Thanks EBM
Eric B. Mckee <>
E. Islip, NY USA
Saturday, February 12, 2000 at 15:58:44 (EST)

I've been dealing with clusters headaches since I was about 23 years old> I'm now 41 and in a cycle which started 3 weeks ago. This is my first cycle in 1 1/2 years and since retiring from the Navy I thought I my have been finished with them. My cycles have veried form a month to two months long usally acuring every 6 months around Feb and july. During these times (when in an attach) I wish I would die. But no matter how bad its been the promises to myself of quitting smoking changing diet ect. end with the cylce. I can't remeber all the prescirption I've had but some where beta blockers stroids firinal tylonal III and on and on. They all seem to work a little for a short time. I had reached the point of feeling there was nothing that would help at all. The last cycle I start 100% oxygen and it helps by reducing the length of each attach but they still hurt. As it gives some relief and works great at home It leaves dealing with work. Which brings me to this sit looking for answers. The past few days I've stayed home and figured I would have to wait them out but will work wait. So hoping there was a miricle break through I search. I would also like to Know Of any local Docs In Va Beach. Forgive the spelling and gram.
Robert s Mcclaren <>
Virginia Beach, VA USA
Friday, February 11, 2000 at 12:45:31 (EST)

And I thought I was the only one....I'm 37, I've been haunted by the demon since I was 13. I get 4-6 attacks a day. My biggest problem was that I couldn't get anyone to believe how sever the pain was. I'm sure all of you have experienced the "take a Motrin." That make me laugh now. My attack are very chaotic, usually last 3-4 months. It is the night attacks that really ware me down. Going to sleep knowing in a couple of hours the cloud ( you call it the shadow) is going to wake me up and then its an hour and half of shoving a hot wash cloth in my right eye. To use a phrase from a movie I saw once or thirty times, "with all these positive waves, how can we lose?" Treatments: Lithium 600-900 mg/day held the demon off for a year and a half. That has now failed. I've done Imitrex, but it is only short term, but it helps. Maxalt: Works for about 6 hours, but at $16.50 a tablet, I think the math is evident. My doctor is purplexed, and refered me to another neurologist and gave me pain killer in the interim. Not a working solution. But now I have a few other options I think. From what I have seen, this has a tendency to be a bit of a long ride, so if nobody minds I will just pull up a chair and hang for a while.
shaggrat <>
San Jose, CA USA
Friday, February 11, 2000 at 00:02:04 (EST)

I have suffered for 30 years. I'am 53 .
jerry <>
amesbury, ma USA
Thursday, February 10, 2000 at 18:40:14 (EST)

thank you!Great site. has anyone else gotten good results from using Dilacor XR?
gary <>
brenham, tx USA
Thursday, February 10, 2000 at 17:08:13 (EST)

Good to find this site, to know that there are people out there who understand about the condition and the amont of pain it is capable of producing! This site should be compulsive viewing for all medical students, G.Ps and neurologists. Medication that works for me: Prophylactive:Verapamil Hydrochloride, 240mg 3-4xday For Relief: Imigran 100mg injection and tablets, oxygen 12-15 litres per minute for about 5 minutes. I have also tried just about everything else. There is an excelent Migrain clinic in Charing Cross Hospital in London, where a Dr Stiener is the Cluster specialist. You can even just turn up in the middle of an attack. This is the only place I have found in the NHS that understands what Cluster headache is realy about.
simon <>
leatherhead, surrey, England
Thursday, February 10, 2000 at 12:45:30 (EST)

CH for 20 years, fighting running battle with the NHS to get medication due to cost. Would love to hear from others in the same boat!
Chris Buckmaster <>
Waterlooville, Hants UK
Thursday, February 10, 2000 at 09:23:29 (EST)

Hi, I suffer annualy, I use Imigran Nasal Spray (20mg Sumatriptan) which will stop an attack within 20-60 mins. But always ends in Sleep.
James Smith <james700017>
Gloucester, U.K.
Wednesday, February 09, 2000 at 23:22:36 (EST)

I like to chat with someone who knows what the pain is like I like to get in contact with soemone who has used prednison and to learn if he / she suffered from site effects. It seems I am now suffering from chronical cluster h and today a new neurolgist described a painkiller to be taken as a ... tablet to be inserting in ones backsite, anyone who has done it and vcan telle me about (site) effects
Leo Jacobs <>
Dearsum, The Netherlands
Wednesday, February 09, 2000 at 16:19:47 (EST)

hi, i've been getting ch for over 2 years now and i'm 21. Winter is my worst time though for sure. I'm still trying to work out when my clusters are. They seem to change all the time. I can have 2/day for a week, 3 days off, 1 shocker that i just can't get rid of.... it really controls your life. I am so used to a constant headache fuzzy feeling most of the time. People can tell me when i'm getting one to because of the way my eye puffs up. Lastnight i got one at 10pm and had a hot shower for about 30 mins and had 2 padadol only and a head masage - it eased and i went to bed. (i'm trying to get off medication at the moment - been off ergodryl for 3 weeks - next up is going off products with yeast)woke up at 1am with the worst one in such a long time - (because i didn't catch it in the first place - 2 panadol really does nothing) so i had 3 neurofen and walked around the house, back to bed, sat up, walk, sit, drink, another shower........I ended up having 2 tablets to make me sleep and got my mum out of bed to help me go for a walk aroung the street in my pjs, i was unbalanced and tears had drenched my skin, one eye had completely swollen to a slit - it has hurt all today - kind of like a bad ch hangover. My heart goes out to everyone who suffers from this. I have never met anyone with ch, but I really feel great from reading all these stories - thankyou and i hope more than anything that one day there will be a cure or a natural preventative.
ainsley campbell <>
sydney, NSW australia
Wednesday, February 09, 2000 at 06:44:54 (EST)

I suffer from migranes, and clusster headaches literally 7 days a week. IM seeing my doctor regularly,to get refills of imitrex,and try to figure out why i have so many headaches. anyone with similar problems, leave a message, and let me know. thanks!
Tuesday, February 08, 2000 at 11:44:54 (EST)

i'm still having c/h's. just got out of hospital again. i've had them for nine years now and have tried everything. the doctors have just started me on a r/x called Topamax. does anyone know or have any experience with this med reference to c/h's? please e-mail me with any information please, for i'm ready to give up. thanks for any help.
Tuesday, February 08, 2000 at 06:14:58 (EST)

I used to find that on any sign of an impending attack, usually an awareness of something but a conviction that it couldn't possibly be so, followed by a feeling in the side of my neck, that a cup of hot tea helped, providing it was soon enough. It was no cure but it seemed to reduce the length of the attack and maybe the severity. However, since being prescribed Deseril after many years of search, I can prevent attacks. I only take it before I go to bed or prior to those occasions when I feel most at risk as I don't want to get committed to it. This means that I have a number of attacks but usually when I am confident that I will be at home. It certainly allows me some confidence to carry on with a normal business and social life without too much fear. Generally Spring is when I can expect a 6 to 8 week session of misery, but nothing is guaranteed! I'm interested to see the site but as this is a Company computer and Company time, I wont be spending too much time here!
David Swanbury <>
Bradford, UK
Tuesday, February 08, 2000 at 06:11:09 (EST)

Has anybody recieved any treatment that works?
Bill Dotson <cokamoey2k>
Fremont , Ca USA
Tuesday, February 08, 2000 at 04:38:08 (EST)

I have been suffering for 15 years now. Imigran injection is the only instant relief I have found. Pethedene injection also works but I believe it is addictive (Not that I care about that when I have an attack, but the Doctors do). I am going to see another Doctor today with a printout of the info I have got on this site. Maybe he will be able to help. My medical aid does not see CH as chronic. Does anyone konw how I can get my Imigran injections on to chronic medication? They are so expensive, one cannot afford to use them every day, a few times a day. It's amazing that depression falls under chronic and not CH and yet CH cause depression. I haven't found anything to prevent the attacks yet, any suggestions?
Debby Hattingh (Pezzutto) <>
White River, Mpumalanga, South Africa
Tuesday, February 08, 2000 at 03:11:34 (EST)

At last - some information on this rare but remarkably nasty and malicious monkey that inhabits the head from time to time - oxygen helps - a recent discovery in hte 10 yeear history. I have just started another cycle and I am currently trying drinking lots of water - thanks for that tip- and mega doses of vitamin C but am unsure about either yet as its too soon to tell if there is a benefit or not. The only doctor I have found who has been of significant benefit has been a sacral-cranial specialist who actually stopped an attack as it started in his office within seconds with very gentle and subtle work. He gets me to do t Alexander technique supine lie down excercise for 20 minutes a day (a good meditation anyway), and so far, although I have just started another cycle (three heaaches so far) it has been a doddle so far compared to the last one a year ago when I was up to the oxygen in excruciating agony that only CH sufferers know about sometimes several times in one night.
Graeme <>
New Zealand
Tuesday, February 08, 2000 at 02:34:05 (EST)

Finally, Finally, Finally, I've found people who can relate to the pain of Cluster headaches. I've been searching for someone who knows and understands how excruciating cluster headaches are. I've been suffering with Migraine headaches for over 30 years, 7 years ago I was diagnosed with Cluster headaches, and I've been searching ever since to find at least one person who has the same problem. Why is there so little information out there about Cluster Headaches? I've certainly found alot of information on Migraines. I personally do not know anyone but myself who suffers with Clusters but I do know at least 5 or 6 people who suffer with Migraines. My Clusters occur 99 % of the time while I'm asleep, and as you know it's a very rude awakening. They always occur on the right side of my head, in the eye, all along the bones in face, including my jaw, and continue on down to my neck and shoulder. The pain as you know is undescribable. The strange part is that when I'm having one while I'm sleeping I'm usually having dreams that are confusing and filled with alot of people. Does this sound familiar to anyone? I thought having Migraines was the worst pain I would ever have to endure but after suffering with Cluster Headaches I realized I was wrong. It is so comforting to me to know that I am not alone. Thank you for listening to me.
Susan H <>
Tuesday, February 08, 2000 at 00:29:56 (EST)

This web page his a God send to me!!! I have been suffering with these since 1987. I have been through all the drug therapys,intrusive procedures,pain meds, and most of all, all the disapointing Doctors who have said that they could "cure me".Maybe in time they will be able to.God Bless all of you . If there is anything that I might be able to help anyone with please contact me
Larry <>
Weatherford, TX USA
Monday, February 07, 2000 at 23:30:30 (EST)

I am so happy to see this site. I have been suffering from Clusters since the mid-80's and have yet to find anyone that was not incredulous to the unbelieveable pain that I feel. I was HYSTERICAL last night. 4 Percocets later and I was still in agony. Saw a neurologist today who prescribed Covera. Anyone out there had any success with this? I will be very pleased when they leave and I am not in re-hab for narcotics!! : ) Brian York
Brian York <>
Columbia, SC USA
Monday, February 07, 2000 at 20:51:01 (EST)

They SUCK!!!!! Many sleepless nights.Oxygen only relief.
bonnie ditch <>
White Lake, Mi USA
Monday, February 07, 2000 at 20:18:13 (EST)

This is a great site, Before this I thought that I was the only one in the world that had these migrains. It is nice to know there is a site that I can visit to talk to other people with this pain as well as get information and help. y
ida <>
Monday, February 07, 2000 at 19:01:22 (EST)

I am glad I am not alone......I have never felt so much pain in my life...I have been suffering for about 12 is not getting any better......oxygen does help me... There is nothing that can give me my quality of life back. It seems I am missing alot of my 4yr old son's life
Liz Brown <>
Negaunee, MI USA
Monday, February 07, 2000 at 09:17:31 (EST)

Whew, I finally found it, my "new home". I very much appreciate the welcome and I felt right at home when I first walked in the door. I am truely "speachless" other than a simple 'thank you' for now. I am not the computer/website monger so I am anxious to take a look around.
Anaheim, CA USA
Monday, February 07, 2000 at 03:19:50 (EST)

Diagnosed by general practitioner; seeing a neurologist tomorrow. In second full week of headaches; 10 days of very limited sleep. Found your site and truly appreciate the information provided. It sure helps to know what has worked for others and to know the right questions to ask MD. Thanks!
Anthony Tafoya <>
Albuquerque, nm USA
Sunday, February 06, 2000 at 18:43:19 (EST)

After years of suffering 'weird headaches' I finally found on the internet where I'm really suffering from. Even my doctor couldn't tell me that I'm suffering from cluster headaches. Now that I found this I'm happy that I can find a way to talk and to read other people's experiences. I will even tell my father because he already has these cluster-aches for some decennia without knowing what it really is. I also want to meet people in Holland who have cluster headaches. Please contact me.
Roddy Branderhorst <>
Hank, Holland
Sunday, February 06, 2000 at 05:33:44 (EST)

Si Roberts <>
athens, ga USA
Saturday, February 05, 2000 at 08:37:34 (EST)

Thank you for a really informative site, On your Medical information about cluster headaches - i couldn't down load the sections Ameliorative Factors & the rest. Is there a proplem with these pages or are they no longer on the site. Im a clusterhead, have been for 20 years and have gone through the whole gammit of cat scans, teeth, eye ENT examinations and only about 5 years ago did I first hear the term Cluster Headache. I would like to know if there are any institutions - possibly in South Africa doing research into CH and what the actual causes for the attacks are. I'm currently in the middle of my cycle -I normaly have 15 week periods of headaches. I recently took Imigran to stop the pain. The first injection worked within 30 seconds - no pain. the second injection, 12 hours later took about 15 minutes to work, when the pain would already have reached it's peak and started to receed. A waste of R150. Thanks for the encouragement on your Site and I will make this one of my Favs. Keep the FAITH
Tim Reilly <>
Cape Town, Western Province South Africa
Saturday, February 05, 2000 at 05:39:26 (EST)

Great site thanks. Is there any research as to why we get clusters - the actual causes, and which institutions are actively working on trying to find a cure. Do you happen to know if there is a support group or research group in Cape Town for Clusterheads. Keep the FAITH
Tim Reilly <tim&>
Cape Town, South Africa
Saturday, February 05, 2000 at 05:18:19 (EST)

If you could see us (my husband and I) you would all see two jaws resting on the floor. I accidentally came across this page and we had tears in our eyes as I read the comments and stories to him. Greg is 42 and has suffered with CH's for 20 years. (hopefully just a coincidence that it was at that time we got together!:) They are slightly different from what I have read in that he gets them exactly 12 months apart from the time they end. They last three months, so if they start in Dec. they end in March and begin the following year in March. So he gets them in every season eventually. They are mostly 10's in degree and last from 1 hour to 14. He has had his sinus' punched and drained, wisdom teeth removed, detal work done, you name it he's done it. He has had every medication mentioned and all have worked for about a month and then he seems to become immune. We have done the oxegen, he's walked bare foot in the snow, hung upside down, done push ups, sit ups, hot showers, cold shower, ice packs, hot compresses, combinations of, folk rememedies, herbs, bio feedback, massage therapy, chiropractors, steroid/analgesic injections in his head and trigger spots in his back all to no avail. (and that's only the stuff I can remember!) I have learned to wake up completely from a dead sleep in one second flat, and the routine begins. Some times one thing will work, the next not. He has found some relief in me massaging the trigger spots on his back and butt cheek. Yup I said butt cheek. Don't ask how we found that one! :) His spot in his back is right next to his spine between it and the shoulder blade about half way up the shoulder blade on the same side as the pain in his head. Well, I don't know how much I can write here so I will stop. Just wanted to thank you for putting this together! It has been a real experience to read this stuff today. It was a bad night and bad day and this, though we feel, acturally ache for you all, has made us smile and breath a sigh of relief to know that there are really, truly others that understand this nightmare! Thank you from the bottom of our hearts! P.S. One last interesting bit of info. My husbands Father, younger brother had them too and our 17 year old son is showing signs of getting them as well.
Nique <>
Haliburton, On Canada
Friday, February 04, 2000 at 19:25:27 (EST)

Once again thought that I was the only person with this curse, and I am sorry to see that I am not alone in the suffering. I am currently in the fourth week of the cycle and have just found this site, and wish you all a speedy relief from the pain, thanks for being there and I will be trying the Oxygen thing soon. Hope it works
Hogarth Gilchrist <>
Oak Lawn, IL USA
Friday, February 04, 2000 at 17:56:26 (EST)

Just found this site and it's reassuring to know that there is somewhere to find out more about what has been ruining my life for 13 years. The doctors I have seen seem to know nothing about it and just dismiss it as "headaches" and tell me not to be such a baby!! Does anyone know a good clinic or doctor in the UK? If so please mail me at Forever squeezing my head and hoping......
Steve Ballinger <>
London, England
Friday, February 04, 2000 at 16:09:42 (EST)

hi i have chronic clusters ,i,m 47 married to a careing wife.would love to talk with others for some help.not much is known in nzl about cc. hope to keep in touch
robin marshall <>
ashburton, newzealand
Friday, February 04, 2000 at 12:51:56 (EST)

doeas anyone know whether there exists a support group in israel ?? thanks your replies to
motti schijveschuurder <>
talmon zafon, israel
Friday, February 04, 2000 at 04:11:13 (EST)

Hi,I am 37 ,male have been suffering with bad headaches for 18 years. I always felt like I was the only one who knew how I felt,untill now,and while I am NOT happy that any of you suffer,I am glad to see someone understands
Darryle Everett <>
winder, ga USA
Thursday, February 03, 2000 at 22:37:56 (EST)

i am a clusterheadache suffer
lehighton, pa USA
Thursday, February 03, 2000 at 19:15:42 (EST)

Hi, partners, it really feels good to know not beeing allone with that. I'm now suffering for about 18 Years, since five years I know, what I'm suffering from, most people around look quiet strange when they hear the name Cluster - None knows anything about it. That's why I made a homepage also for that theme in German. If you like, please visit me at Ciao everybody and don't loose your humor "Alredy clustered, today?" Bye everyone cu
Jakob C. Terhaag <>
Waldfeucht, D Germany
Thursday, February 03, 2000 at 16:50:53 (EST)

I consider myself lucky in that I got to be 48 before I had my first attack - 3 weeks ago. After I had 3 attacks all about 1.30am, I went to see my GP (Doc). He diagnosed cluster headaches first visit and put me on 50mg Prednisone a day for 7 days and gave me Ergotomine tabs to abort attack. Prednisone worked well and I only got one attack in the week I was taking them (after being out for a celebratory dinner - including it seems a few too many ales). Ergotamine though was not successful in lessening attack but having read some of this site I am inclined to think the tablets are not acting fast enough. I got another attack last night (the worst so far - also after I had been drinking - one drink seems ok but several - well I will give them a miss for a while), so I will try going back on the Prednisone. Whilst my instinct is too seek a quiet dark place to hide - I have already noticed walking seems to help - so now I will take some of your advice and try more strenuos exercise - perhaps I can even persuade my partner too....;;-)
Bob Spencer <>
Sydney, Australia
Thursday, February 03, 2000 at 08:51:10 (EST)

I've suffered from clusters for 18 years and tonight I'll try 100% oxygen for the first time. I just found this site and I'll let you know how the oxygen worked and share my story soon.
Riverside, CT USA
Wednesday, February 02, 2000 at 21:55:36 (EST)

Hi folks I am a 57 year old male who started getting C H about 5 years ago.It took me 2 years before I went to see a doctor to find out what was wrong.After ruling out my sinuses he told me I was getting cluster headaches.I hope this doesnt sound strange but poultry will triger mine.It took about 3 years of eliminating different things to find out the reason for mine.Is their any body out their as strange as me.
Bob <>
nesconset, ny USA
Wednesday, February 02, 2000 at 16:42:09 (EST)

Hi Everyone: I signed the guestbook almost a month ago when I first found this site. I was desperate when I came here. There is nothing like this place anywhere. I found so much information and support here. I needed to come back here and update my entry. I am a 39 year old female, married, 2 daughters. I have had eposodic clusterheadaches for 14 years. Until 2 years ago I had been on every medication my Drs. would try. I am now using the Imitrex injections. Having read through everything here I discovered the "Imitrex Tip". It works great for me and has saved me lots of grief and money. I recommend visiting this site and reading everything you can. The people are very supportive and there for you when you think no one else is. You will learn more than you ever thought possible about these headaches and be armed with lots of information to use in seeking help. Thank you all for being here.
Piper <>
Wednesday, February 02, 2000 at 16:05:50 (EST)

This is my first posting to this site. I am a 36 year old music therapist who has suffered from ch since I was 14 years old. All the stories I have read this am are all too familiar. I have episodic cluster and will generally only have one a day thanks to the amazing treatment provided by the Diamond Headache Clinic in Chgo. Although the pain is the pain and very few things seem to help, it is most comforting to have a whole staff of people who understand when you call them something during a headache, you didn't really mean it. I went 5 years undiagnosed even though my Father has CH and I saw the same Doctors, it wasn't until I almost OD'd on demerol while in the hospital that I was finally steered in the right direction. Through the use of a million different medications, DHE 45, O2 and histamine desensitization I now sometimes get a year and a half between cycles. I am so grateful that my husband has been able to stay with me through all this, although I did warn him and wouldn't get married until he had seen them, he is actually the one who found this site for me. I think the most important things I use to get through is constantly reminding myself that every headache ends...eventualty...and an absolute dedication to not becoming just another suicide statistic, I'm not nuts, I'm in pain. There is so much more out there now then when I started, that I have been able to have a quality life even with the prospect of the next cycle starting at any time, I'm not as lucky as by Dad whose arrive every spring at approx. the same day and time, mine come out of nowhere. I did finish in the top 10% of my High School class and graduated from DePaul university even though it took six years to get through. I have worked in acute care psy. and in the prisons and have survived and fully intend to keep on surviving! Please don't give up, if you refer to your headaches as the demon let me tell you about the end of the Bible, God wins! Every day I hope and pray that through my suffering they will come up with something that works and works well for the next generation of CH victims.
debbie ploehn <>
Battle Creek, mi USA
Tuesday, February 01, 2000 at 12:40:58 (EST)

Well...what can I say that hasn't already been said. I too have those sleepless, pain-ridden nights. I'm going through my 6th cycle in 5 years, 2-4 weeks in length, varying intensity. It's something that can't possibly be described. I feel sorry for my wife, my daughter and my other family that worries about me during my cycle. As I sit at work and write this, I'm "having one" and I ran out of medication. Oh god!!! This day is HELL!!! For all that suffer...enjoy to the fullest the time you have without the pain. And try as many medications as you can. I have gone through 8 or 9 until I found Imitrex Nasal (20mg) This works every time...and within 10 minutes. Good luck fellow victims!
David <>
Los Angeles, CA USA
Tuesday, February 01, 2000 at 12:21:26 (EST)

I suffered from chronic cluster headache from 1990 - 1998. My headaches now appear to have remitted. What chance of return afeter two years?
Don Pearson <>
Tuesday, February 01, 2000 at 11:35:57 (EST)




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