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


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Hi, It helps to know that others truly understand the Demon. I'm 47 years old and I've been a very typical Chronic Clusterhead for 3 years - always on the right side. I won't even try to describe the pain because you already know...... I generally get nailed in the evenings and after going to sleep, but often have to walk out of business meetings - not good for the career. I find it very interesting that I'm not the only one who constantly moves in an attempt to escape! According to my VERY supportive wife and kids, my personality has gone down the tubes because I'm always hurting, or in fear of hurting. Current meds are Verapamil + Neurontin + Indomethacin - The Indomethacin at 50mg X 4 per day has reduced the the duration from 40-60 minutes down to 10-15 minutes. Severity not reduced, but it REALLY helps to know that it will end "soon". Have also tried Oxygen and Imitrex - no effect. If I'm home when I get the "warning", I can sometimes stop the Demon by rapidly cooling my entire body with very cold air or water.
Marc <>
Morro Bay, CA USA
Thursday, November 30, 2000 at 15:01:14 (EST)

Hi – Finding this site and knowing there is someone out there that I can share this with is like a light at the end of the tunnel for me. I have suffered from bouts of headaches for probably 15 years now, and over that time I've seen so many doctors (probably why they are all driving Euro sports cars and I'm driving a GM). You name it and I've been diagnosed with it, from a brain tumor to a jaw alignment problem. For 3 weeks now, I have had this headache on and off throughout the day and night. It starts off with this dull pain around my right eye, always on the right side, increases in intensity, lasts anywhere from 1-2 hours, and makes me feel as if I would do anything to be free of the pain, (the 1st week I was sure I'd feel better dead than alive). The pain is just so hard for me to explain, my Dr. initially thought "another migraine". After the 1st week, he changed his mind and mentioned "cluster headaches". I never really knew what a cluster headache was, and so have been looking for any information since, (this is how I found your site). I’m now fairly certain that these “bouts” I’ve suffered over the years were really cluster headaches. It seems to all add up when I think about it. I was off work for 2 of the last 3 weeks. This last week I’ve had to push myself to go through the motions, I try to act normal and cheerful at work and at home, but the truth is, I’ve still got the headaches. I’ve started on Verapamil, and I think the intensity is a little less, (or is it this ‘bout’ coming to an end) I still feel I just want to be left alone to curl up somewhere in a dark quiet room. I am struggling here, and family, friends and co-workers all seem to think “Oh it’s stress”. Why is that – why do people associate a headache with stress, or that maybe I would benefit from some kind of psychiatric help? Hey I’ve got a headache that just keeps on hitting me again and again. Can someone please tell me what water can do to help me? I noticed some people mentioned water sometimes helps. Thank you for such a caring, sharing site, I feel as though I found the friend I’ve been looking for, and they understand me!
Jude <>
Adelaide, SA Australia
Thursday, November 30, 2000 at 06:21:45 (EST)

Hi, just located this site last week when I was up all night (again) and desperate! Thankyou!!! I started my headaches 8 years ago. 1 doctor diagnosed ch. I've seen 10 doctors and 3 neurologists. One did a brain scan 7 years ago, all fine. I've also been diagnosed with harmone, chemical imbalance and Migraine. A few couln't even figure me out. My last doctor was awsome and lost her because of a move. She diagnosed me as definately not having all migraines, only a few are. That's why migraine meds don't always work for me, only rarely. Now I'm chronic. Lately been trying suppliments. Now on B6 and Niacine. Not total releif but enouph to keep it up. Also trying the water treatment. But just started and I guess it may take awhile. I also take Celexa for the Seratonin. Doesn't stop them though. A pharmacist has also suggested feverfew, but has to check if there's a reaction with the celexa.
Laura Lee <>
Sydney, NS Canada
Wednesday, November 29, 2000 at 20:02:35 (EST)

I just started having my clusters again. it's been about 3 years since my last attack, started with 1 or 2 a day now it's every couple of hours.Can't wait to see my doctor.
Dennis O'Keefe <>
Walworth, NY USA
Wednesday, November 29, 2000 at 18:25:29 (EST)

I am 28 and in my third cluster. My first was about 4 years ago. This cluster is the worst so far. I am in my third week and the pain is worse than it has been before. I have missed a lot of outings with friends, my wife, and family because of the headaches. I am going to a neurologist soon that specializes in cluster headaches. I hope he can give me something to help the pain. I just started another medication. Hope it helps. So far I can't tell. This is a great site and I am glad that I found it.
Mark Fjellman <>
Crystal, MN USA
Wednesday, November 29, 2000 at 13:50:50 (EST)

My father has had cluster headaches for years now. It is finally starting to subside and he's 59! his started when he was a young man, about 25 years old. I also have cluster headaches, but the doctors I've seen have assured me they are migraines, because I am a woman. This makes me very upset because I know it's rare in women, but it's not impossible. I learned a lot by reading this website. My husband suggested that I look it up and see if I could find out something different than what I already know, boy I'm glad I took his advice! Again, thank you for understanding.
Tuesday, November 28, 2000 at 23:48:06 (EST)

Hi, I'm Ryan and i am 19 years old. I have been suffering from Cluster Migrains since I was 12. My father is a sufferer as well. He is now 56 years of age and has been recieving these Migrains since he was 11. Be Strong...
Ryan MacKay <mack_u_up>
Toronto, ON Canada
Tuesday, November 28, 2000 at 15:12:03 (EST)

I started getting this headache that never goes away it will dull down but is always there in Aug of 2000. I have had three MRI's done a catscan and two many medications to mention. One doctor says it is hemicrania continual, another says cluster so I am not sure what it is.
Mary Omari <>
Lake Wales, FL USA
Tuesday, November 28, 2000 at 12:06:25 (EST)

I'm 36 years old have had them for about 17years now...In cycle again for first time in 2years..Nothing seems to be working,not even 02.Just found this site,it is nice to know I'm not alone in this.if you have any new ideas PLEASE give me a e-mail.Good luck to all..
Freddie <>
Brigantine, N.J. USA
Tuesday, November 28, 2000 at 08:11:50 (EST)

I have been suffering from Clusters for 15 years. I am 35 and I never know when the next cycle of headaches will start. The only thing I found that works is the Imitrix injection. Sometimes I go through 2-3 injections a day. I only wonder what I am doing to my body with all those injections. Without it I could not function. When I first started getting clusters they only lasted a short time and I was able to squirm my way through them but know they last for hours without the injection. Without the Imitrix I don't know how I would survive. It allows me to keep doing my daily activites without to much interuption. Currently I am on Predisone to stop another cycle. But I seem to need to stay on it longer and longer. I hope one day we all can be free of this terrible affliction.
Stephen Gittelman <>
Germantown, MD USA
Tuesday, November 28, 2000 at 08:06:03 (EST)

CH began aroung age 27. CaffergotPB offered some relief back then, but became unobtainable. Sublingual ergotamine worked at start of cycle, but at worst point was no help. In my early 50's the attacks began to be further apart; I would go for a year or two between cycles. It has been almost 5 years since last attack, but they began today. I had hoped that I'd "outgrown" them. We'll see how this series progresses. Having suffered a heart attack, my resources are limited. I'll pass along any revelations. Thanks for this site. As others have said, it's impossible to describe to others (even doctors) the degree of pain these things bring.
Wayne Conrad <>
Summerdale, Al USA
Monday, November 27, 2000 at 23:05:34 (EST)

I have dealt with the demon as you call it for 28 years. Been treated like a dope adic when I go to the hospital and necer knew anyone else who had it. I can't believe their is a sight for people like me. There is a god.
Sharon Abrams <>
Tekamah, NE USA
Monday, November 27, 2000 at 20:19:40 (EST)

Awesome site!!! The devil and I are not alone...
Michael Error <>
Mountain Home, ID USA
Monday, November 27, 2000 at 18:13:04 (EST)

Ca't believe I have been coming to this site for three years, and have yet to do this. Those of you who recognize my name realize I rarely post unless my life has fallen apart to the extent I can no longer deal with life. You all have saved my life several times. I have not gotten help from any preventative, or abortive either, with the exception of the use of narcotics, which has been marginally helpful. This nightmare has cost me my marriage, possibly my job, my self-esteem, the respect of my kids, and probably my co-workers too.I am out of opytions dr-wise here locally, so am considering looking further afield- VA, GA, has been suggested. Write me if you would like, Tami
tami <>
Cocoa, FL USA
Monday, November 27, 2000 at 15:48:15 (EST)

i have suffered from chs for 25 years i am 47 have been taking prozak wellbutin now i,m onzoloft some days can,t stand pain would like to cut head off
tom egnoski <egnoskit>
whitewater, wis USA
Sunday, November 26, 2000 at 13:44:23 (EST)

Hy I have been a sufferer of this debilitating for thirty years. I am now fifty and get little releif from medication, or am bombed out on them and cannot function. o2 has not worked, sandomigram flattens me so much I can't stand up,beta blockers have some efect though falling over with hypotension is not good. Got any sugestions or help love to hear from you les
Leslie A. Griffiths <>
west wyalong, nsw Australia
Saturday, November 25, 2000 at 22:07:35 (EST)

I am 55 years old and I have been suffering with chronic cluster headaches since age 40. I have been everywhere for help including trygeminal laser surgery and accupuncture nothing has worked, I am much better after so many years dealing with the pain as it has become so routine I am able to withstand the onslaughts to a certain degree. The interesting thing I have found over the years is that it is difficult, if not impossible to convey the pain cluster headache sufferers experience to the average person. If anyone who suffers these headaches and still drinks and smokes I have no sympathy for. Please if nothing else stop the alcohol and tobbaco, I am now on high doses of prozac(80mg daily) and have had some success ,ask your doctor. I was under the impression that after the age age of 55 the headaches suside and can even disappear, if there is first hand knowledge of this I would like to know. Good luck to all.
Joel Roth <>
ponte vedra beach , fl USA
Saturday, November 25, 2000 at 18:10:02 (EST)

My clusters started around age twenty.I thought, as we all do,that I must have a brain tumor. Three years and four specialists later I was diagnosed with cluster headaches. I actually may be one of the lucky ones. My clusters run once to twice a year and only one to two a day. I am currently on imitrex as well as verapmil. My cycle has thankfully just ended so I can actually look forward to going to bed as opposed to dreading it. I like many other sufferers slither out of bed every night for weeks on end at the same time for my nightly ritual. I think to myself, be quiet not to wake my wife, She is very understanding but helpless to my pain. I certainly am glad to know others feel the tremendous pain associated with CH. Its great to know that this group exists for all who suffer.
Michael Brown <>
Methuen, Ma USA
Saturday, November 25, 2000 at 17:56:15 (EST)

Hello. I am a 41 year old housewife, mother, and grandmother. My husband is the Cluster sufferer. He had been in remission for a few years but now they may be back. I can relate to the hell he and others go through but have never personally had a CH. We have only met one other man that had them and he didn't want to talk about them for fear of jinxing himself. I'm glad to have found this forum. I just hate it though that there is a need for it. But, here I am.
Nadine <>
Amma, WV USA
Saturday, November 25, 2000 at 17:05:21 (EST)

I discovered this website today...I'm amazed! I have had clusters for 30 years. It didn't take as long to diagnose as for some sufferers, because my mom had them, and was under a neurologist's care. I tried her Caffergot and it worked. That was 25 years ago. My attacks seem to hit in the fall, every 3 years or so, and last around 6 weeks to 6 months. I have anywhere from 1 - 5 headaches a day. Unfortunately I am going through that right now. Only 1/day right now, thank God. It's like the body-snatchers; don't go to sleep or they will get 'ya. I am using Caffergot now, but if they get more freguent or if this session lasts more than 6 weeks, I will probably go on an antidepressant that will hold the level of serotonin steady. That has worked before. I see on this website that there are many treatments that I have never tried. If I get into more trouble, I will consult this list. When I get a headache and am not able to abort it, I fantasize about killing all of the stupid doctors that have not understood my needs in the past. Most recently, I had to beg for a precription for Caffergot. The doctor wanted me to use imitrex (only 5 allowed per month!?!?!) What was I supposed to do the other 25 days of the month? He was a new doctor to me because I just got a new HMO. Many doctors just don't understand at all. God bless all of you, and thank you for being there for each other and me. MKB
M. K. Bramble <>
St Petersburg, FL USA
Saturday, November 25, 2000 at 13:29:35 (EST)

I've been dealing with these things for 15 years, finally have them somewhat under control
Bob Dunn <>
Roseau, MN. USA
Saturday, November 25, 2000 at 06:59:38 (EST)

My boyfriend suffers from cluster headaches. He gets them every night! Lately he has been getting them during the day also. He has talked about having the nerve severed? Does anyone have additional info on this procedure? Is it successful? He has been taking Cafergot for 10 years, which helped, and now it has been discontinued. He feels thats why they are more frequent. Doctors keep switching medicine and nothing is working, except the oxygen helps.
Penny Tjernagel <>
St. Paul, NE USA
Friday, November 24, 2000 at 20:06:39 (EST)

I'm working on my PharmD. Which Is Doctor of Pharmacy. I have been dealing with horrible headaches since I was 8 years old. I have read almost every entry here, and have yet to run across anyone taking Stadol NS and Fiorcet, except one, and she had not stated her effects. These two drugs work wonders, but at the same time have some side effects I would rather not deal with. Those including; Vomiting, euphoria, and tiredness. Stadol NS is a Narcotic, it's a class four drug, and besides the Government saying so, I've found no hard evidence, besides nurses, that either drug is that addictive although Fiorcet is class three drug. Stadol NS works in about 5 mintues and the side effects kick in shortly afterwards, about 30 minutes is when the vomiting and euphoria starts, it's a false feeling because the Stadol is a CNS depressant, so of course you are going to feel very sick. As for the Fiorcet, the main problem with this drug, although a miracle for some, is that it kicks in the CNS about 2 hours later, which will not stop a headache immediately. Both drugs are expensive, so insurance is a must here, cash price for Fiorcet right now is $150-$200 for a month supply, which if you all really have the pain required for it, would be 100 capsules, and Stadol NS right now cash price is about $100-$110 for a whole 8 doses!!! So for the person paying cash, it's almost unrealistic, but it works so well. These two drugs are really worth looking into, but you and your doctor will have to discuss the risks, as these drugs WILL MAKE you very sick after ingestion. Sorry, the Stadol NS , NS means Nasal Spray, So you don't have to worry about vomiting pills back up once a migrane has started. But at the same time, once the sickness has started, like taking oral preventatives, you can't get rid of it by throwing up and somewhat controlling the amount of drug the body accepts. Will write with more drugs as I try them, Later, J.T
J.T. <>
Henderson, NV USA
Friday, November 24, 2000 at 04:03:21 (EST)

The past hour, having found this site and read through everything that is here, particularly the messages, has been one of the most profound hours of my life. I am 43 years old and have suffered from ch's since my early 20's. For the first time in 20 something years, I AM NOT ALONE!! I am pretty much a classic case, with one little twist this time around. Historicly, my clusters hit me right around every 18 months and typically last 6 weeks or so, anywhere from 1 to 5 a day, depending on meds. This latest group I'm in right now waited two years to come along. "Thought you were done with us, huh? Take this!" I'm right at six weeks, so I'm hoping they're almost through with me. I'm on prednisone and propanolol, have tried some other things, these work best for me. I also have O2 that helps sometimes, but I have found the best use for the O2 is to rid me of what I like to call "cluster hangover". After a night with several episodes, it helps get rid of the lingering soreness in my head. My dances usually last about 30-45 minutes, have had a few this time around that lasted as long as two hours. Cold rags to the forehead and back of the neck, lots of pressure on my temple, blowing my nose at least 5 times, tears in my eyes, pacing the floor and they're gone...but not forgotten. How can you? Every minute, every twinge, every that one coming?? Thank you all for sharing your "secret", and helping me through another day with the demon. Only saw him once last night. Time to hit the hay and see if he's still around. Take care, hang in there and remember the good there is in life! Feeling your pain....Lee
Lee Thompson <>
Phoenix, AZ USA
Friday, November 24, 2000 at 02:39:53 (EST)

Hi, everyone. I've been suffering for about 10 years now. I've had headaches all my life (sinus, stress, etc.), but I can remember distinctively the first cluster I had. I was sitting in my Psych 1 class in college when this strange pain came on quickly. All I could do was grasp the arms of the chair I was sitting in and sweat it out. I literally felt the blood drain out of my head because the pain was so intense. I must've been white as a sheet. Now, at least I know what it was. And I though it was just a caffeine headache : ). I've lived with these things attacking me at 2:30 a.m. and 10:00 a.m. for years, but now, in my current cycle, they're attacking at random. I've tried Cafergot, but after hearing of rebound headaches, decided to simply live with them. I have not tried O2 because I have heard it can burn your lungs. Has anyone tried biofeedback? I'm very thankful that this site exists and I'm sure I will find myself checking it fairly often.
Lawrence Stewart <>
Durham, NC USA
Thursday, November 23, 2000 at 11:43:47 (EST)

I have found, if this is helpful to anyone, that acupuncture has given me my longest period of remission from clusters in ten years.
Thursday, November 23, 2000 at 10:07:21 (EST)

I am female, 32, and have suffered from cluster headches since the age of 15. It's great to read this site, as I find most people don't understand what it is like, and tend to confuse clusters with migraine. It's also hard convincing people how this intense pain can start and stop so suddenly.
B.Margaret O'Neill <>
London, UK
Thursday, November 23, 2000 at 09:58:23 (EST)

I have suffered with clusters for 20 years,right now I'm in the worst cycle I have ever had, little or no sleep in 3 months,and going from one headbanger to the next.The nerve block worked for two days but my doc wont let me have it on a regular basis, Stadol inhaler med works, but he will only let me have 2 refills a month, went through those in one week, now he says sorry about your luck.Thanks for your site and the place to vent to those that realy know what pain is
John E Schneider <>
Columbus, Oh USA
Thursday, November 23, 2000 at 05:41:53 (EST)

I suffer from this crap all the time. I found that vicoden really sooths my pain. I also found a place on the net that gave me several sources to get any kind of pain medicine without having to visit the doctor... is the link I believe.
Jim Baker <>
Austin, TX USA
Thursday, November 23, 2000 at 03:07:45 (EST)

Hello, My name is Bill and I suffer from the"demon". I've had attacks now for over two years and according to medical statistics I'm no where near a remission. At first I thought maybe a brain tumor(sometimes i wish),then maybe a sinus infection,and at last,hopefully, a dental cure. Oh well.I live with it.I find that 100%oxygen helps,(if i can get to the tank before the first minute passes) I call it the train,as it feels like a locomotive barreling down. My wife tries to understand but really she doesn't. she asks me if I'm OK during an attack,when all i want is to be left alone.I don't know if anyone else feels this way but I'm really afraid to go to sleep,that's when the most intense attacks occur.My wife gets angry when I don't want to go to bed.I tell her I'm afraid to because I know I'll be up (often twice)with a killer in a couple of hours.Oh well, I hope no one minds me venting like that,I'ts good that you folks are out there, I need it, thanks....Bill
Bill Hinman <>
East Syracuse, NY USA
Thursday, November 23, 2000 at 02:35:25 (EST)

I have been a ch sufferer for 20 plus doctor said I might outgrow them when im 40.Well im 41 and i was awaken by a headache last nite. It seems like i get them every year around thanksgiving and they last 2 months. Last years cycle may have been the most painful.Like most of you the medication im prescribed does nothing, I think it might even make them worse.I have 2 small children and a wonderful wife who tries to help me when I am awaken by a headache. I have yet to find any medication or remedy to lessen the pain. I dont want to have to go thru 2 more months like last year. I would welcome any home remedies out there to lessen the pain. Good Luck to all you ch sufferers
Wednesday, November 22, 2000 at 11:46:48 (EST)

I do not get clusters my husband does. We have just started a new set last Friday. "They come every 2 years I will tell more next time am just grateful you are there. As hard as ch are on the the person they are devestating to watch and not be able to do anything to help him but be there. He has had 30 years of this. Someday Maybe someday.......
Terry Pfeiffer <>
Lancaster, Pa USA
Wednesday, November 22, 2000 at 10:19:28 (EST)

What a fantastic web-site. I have only just (at last) been diagnosed as a cluster sufferer after 20 odd years of them. Just turned 40 yesterday - my present; day 17 of a round of headaches. The remission period has got longer as I have got older (9 months until now) but the pain and frequency of the headaches has worsened, this bout 3-4 a day. Imigran usually works but takes quite a while, trying the nasal spray for the next one and I'm excited about getting my O2 tank tomorrow as 10 minutes the other day nailed the headache straight away. keep up the good work, my sympathies and thoughts go out to everyone that understands. I feel lucky in some ways after reading some of the brave and amazing stories here.
Wayne D <>
Perth, WA Australia
Wednesday, November 22, 2000 at 09:09:10 (EST)

Hi, I was a sufferer until I stopped smoking, I figured that if it did not work at least my mind would have been preoccupied for that lenth of time, instead of wondering when the next one was coming.I smoked foralmost 50 years So if you say to yourself you cant do it,YES you can! ( Its a hell of a lot easier on you than the headaches !) NOTE when the headache was over I would smoke 3 or 4 cigarettes in a row to calm down!
Mike Donohue <>
Smithtown, N.Y. USA
Tuesday, November 21, 2000 at 17:57:58 (EST)

How very bizarre...after 20 years of suffering I've finally been diagnosed with CH's and as I sit here and type, the dull 'shadowy' pain that you all talk of is emerging. I entered the realm of cyberspace 4 years ago, just after my last demon attack, so appropriately apt that I named myself 'shadow'...a premonition I doctor has me on Zomig (Zolmitriptan), but as they're AU$20 for 2 tablets and I'm suffering up to 3 attacks a day, I'm back there tommorrow to try something else...I'm sure it would be cheaper to be a junky *shakes head* Peace all and thanks for sharing some incredible stories most of which sound much like my own...this site is AWESOME!
Shadow <>
Perth, WA Australia
Tuesday, November 21, 2000 at 07:13:27 (EST)

I have only recently discovered this site - will come back and add more after exploring more - have suffered for 12 years now - Grateful to find this site and hope to talk with all of you -
George Dempster <>
Lafayette, Co. USA
Monday, November 20, 2000 at 19:30:12 (EST)

I am not a CH sufferer, but my brother is. I found this web site when he got his last attach about a month ago. He does not have computer access and I have printed out somuch information and sent it to him in Florida. He just sent me back his survey which I will imput for him. He never knew anyone else who suffered from this. He actually was hoping he was the only one (didn't want anyone else to suffer as he has), but he finds comfort to know there is another person out there who can relate. His biggest fear was that it was heritary and he has 3 children. From what I read I does not seem to be-he was happy. Peace to all
Marie <>
E Islip , NY USA
Monday, November 20, 2000 at 11:46:57 (EST)

Hello, my name is Scott West and I have been diagnosed with clusters for about ten years. I am now 30 years old. At the time I was diagnosed I was in the Marine Corps and serving on a ship during Desert Storm. The first one hit me and I thought that my brain was going to explode out my ears. I am very lucky that I was diagnosed while still in the service because the VA has now classified me as 10 percent disabled which allows me to receive my meds for almost free and in much larger quantities than most insurance companies will pay for. I have tried everything from prednisone to lithium to imitrex and none of those worked but now the docs have me on a drug called Gabapentin or(Neurontin). I believe that it is very expensive but if you can then you should try it. I have at least one cycle every year since I was twenty and the first time that they put me on this I skipped an entire 18 months but now I am in a cycle(11/20/00) that I hope is coming to an end. I usually have my cycle from March to May or June. I am interested if anyone has ever tried to take an aspirin regimen to thin the blood and therby making blood flow through the restricted vessels in our brain a little easier. I am thinking of trying this. I also use stadol and I have an H-tank of O2 next to my bed and nine C-tanks that go with me in my car wherever I go. Thank you for creating and maintaining this site and I will be back often. I have to go suck some O2. I am sure that you know how it goes. THANKS Scott West
Scott West <>
Hebron, KY USA
Monday, November 20, 2000 at 10:05:44 (EST)

Yes! Judy is right. Please include and review your email address when you post (if you intend to include it). It makes it impossible for us to offer any help. Read the archives and get to know us if you are worried. You'll find we are a friendly bunch and won't get in your way.
Charlie S <>
Jamestown, NY USA
Monday, November 20, 2000 at 06:14:18 (EST)

One hundred million thank you's for your website. I am now 44 and I have been a sufferer of CH for 18 years although they have only been accurately diagnosed in the last five years. Before then the doctors put it down to a variety of things and offered no treatment except pain killers which are ineffectual when the CH are at their peak. I used to suffer from CH in the autumn on a yearly basis, then skipped a couple of years and then they began to appear in late spring (November-here). At the moment I am in the second week of them and they are building in intenisty and frequency. I have been prescribed Desiril (Methysergide) of only 3 mg per day, but upped the dosage myself this week and consequently have found the headaches have not increased in intensity (for the moment at least). It is sad to know others suffer but great in the aspect that people out there know the feelings and pain one gets. Noone I know, has any idea of what I suffer. Coming here has given me more comfort than you would ever know. I sometimes felt friends and family used to think I was putting it all on. Thanks a million for the website once again. Barry
Barry <>
Melbourne, Australia
Monday, November 20, 2000 at 02:00:35 (EST)

45 yr. old male who's been diagnosed with CH since the early 80's. Fortunately only seem to get them for a week or so every 5 yrs. At first was given Prednisone, and some kind of inhaler medication which I can't recall, which did no good at all. Then a Doc put me on Lithium, which though it had some minor side effects such as dry mouth, diuretic, a bit of impotence, I was more than willing to put up with for the few weeks I was taking it during a CH period. It was a godsend! No more headaches. The past 10 years or so I've been on and off the anti-depressant Zoloft- and I became aware at least once during that time that I was probably having a CH attack but it was so very mild compared to all the others that I'm convinced the Zoloft was having an effect on it (which killed two birds with one medication-nice!). FYI, I believe Lithium, in much higher dosages than I was taking, is used in Bi-Polar (Manic-Depressive) drug therapy as well, though what that illness & CH have in common I don't know. My latest bout with CH is right now (11/19/00), but though the symptoms are similiar to past attacks (though not in pain severity), the interesting thing is the location seems to have moved so that it is centered in my teeth/jaws on the left side. Before, the attacks were always centered in the classic spot, behind the eye (left), and would be extremely painful. I'm going to see what happens with this current attack phase before I seek medical help. As I said before, Lithium has been helpful in my case, but there might be new or different meds. out there now that may help without any major side-effects. I at first attributed my "toothache" pain to just that, my teeth, but now figure a problem with a tooth/filling etc. would be a more constant & localized pain. This pain radiates through both the left-side upper and lower jaws and spreads into my cheek--giving it a flushed feeling. I also experience a clogged left nasal, but nothing affects the eye so far. The pain was getting somewhat intense for a short time last night, waxing and waning for about an hour and a half before fading away. Very minor nervy sensations have followed ever since throughout the day and evening. I'm very glad to have come across this site.
BobC <>
Bellevue, WA USA
Monday, November 20, 2000 at 01:22:19 (EST)

Tears came to my eyes when I first logged on to this sight. I make it a point not to be obsessive when it comes to CHs because that will increase my headaches frequency. I've been in my current cluster for 6 weeks and the days that I don't get them, I spend the day worrying about getting them! I HATE this! Getting enough medication is also a concern. I try to use my Imitrex during my working hour bouts. Lately when my attacks hit during the night I will try to walk it off in the COLD night air. Disappointing results though... I've been dealing with CH since I was a child, age 7 was my first recollection. My first medication was Aspirin, Aspirin and more Aspirin until I would vomit. I am 41 now and experience a cluster at least once a year. These vary in season and in length. Anywhere from 2 weeks to 2 months. I have tried so many treatments that I have forgotten most of them. I currently use Imitrex Nasal and it works "most" of the time. I await the day when this torture stops and I can look back at my midnight dances as the worst times of my life. The good news is that my father also suffered from CH. For the past 5 years or so he has been CH free.
Ken Michels <>
Sunnyvale, ca USA
Sunday, November 19, 2000 at 21:12:07 (EST)

I'm 49 years old. Been suffering with cluster headaches since I was 18. Was only diag.15 years ago. I have tried too many medications to name. The only thing that really works is oxygen. Please, don't expect it to be an instant relief,I't sometimes takes from ten to 30 minutes. But compared to a cluster that lasts from 1 to 2 hours,It's a blessing. I'v had as many as 6 a day, 2 or 3 of those at night. I have portable tanks I carry in the car so when I'm at work I can get relief. I don't know how many of you have tried oxygen but,I't may be worth another try, Just give it a chance to work. I hope that some day we can all be free of this ugly Demon.
Monzil Dumire <>
Largo, FL USA
Sunday, November 19, 2000 at 18:36:13 (EST)

i was overwhelmed with joy when i found out about this site but at the same time very sad to know that there are others that are suffering that unbberable pain and agony.ive been dealing with ch for 7 years now,when they come on they last 8 to 9 months at a time,when they leave its 6 to 12 months i have just recently seen my so-called ch specialist,he has changed my meds. around so we will soon see.the only releif that i get is from imatrix (inj.) the pills have never worked for me.this is my freinds e-mail address please excuse my spelling
Lenny F. <>
tarzana, ca USA
Sunday, November 19, 2000 at 15:43:03 (EST)

Thank you very much for making this website. I'm in my third week of the second episode of these nasty little things. i can count on them three to four times a day now. my wife is not what you would call happy. midnight trips to the urgent care center, me crying like a baby. this is not fun. and i'm supposing that there is no type of cure or anything else like that out there, just medication huh? these things are getting worse and are taking there toll on my family as well as me. i have but one saving grace, Cafergot. oh, i have one question for anyone, as yet another opnslaught creeps up on me... has anyone's eye ever actually exploded during one of their attacks?
Derek Hawley <>
Fairbanks, Ak USA
Sunday, November 19, 2000 at 13:21:41 (EST)

This is the best thing that ever happened to me. Thank's so much for the help. I'm 53 and this is my third episode in seven years. The first two I just suffered through because nobody knew what was wrong with me. MRI's allergies, what everyone is diagnosed with. Saw a news report from Wichita,Ks. TV station{thanks DJ} with a link to this website. Have been dancing for about three weeks now. This time they are hitting me during the day where before has always been at night about an hour after going to sleep. Family Doc is working with me with the information I have taken him from this web site. Has me on Prednisone, Maxalt MLT, and oxygen. Went from 10's to 5's the first couple days and some bearable shadows. Still holding my breath though and scared. Went to "where we live" and talked to a sufferer in Hays,Ks. who turned me to the O2. I read the message board at least twice a day. I'll be here from now on. Your friend in or out of pain. Bill Morris
Bill Morris <>
Goodland, Ks USA
Sunday, November 19, 2000 at 12:44:40 (EST)

A very dull ache encompassing the left side of my head. Then,within a few minutes the dull pain travels to my left eye and stabs relentlessly,then the pain moves down into my cheek.Not a throbbing pain, but a stabing,poking,piercing sort of pain.Then to the temple and I sware it feels as if someone is squeezing it with a pair of plyers. I get dizzy and I thrash around on the bed. Now the thing moves to my ear,Yes the inside of my ear!! My wife has brought me an ice pack . she says it will numb the pain. I find that ice, and sometimes hot packs will mask the pain. but not this time.The pain moves to my jaw, My eye is quite swollen and the pressure builds deep inside of it.Then the pain moves quickly from area to area as if trying to decide on a place to settle. Im curled up now in a ball and crying like a baby, pounding my fists into the matress wondering why me? Then the burning sensation.Not like fire , but rather a very dull ache with a strange intensity which sits behind the eye and makes you feel sick to your stomach.After about an hour or so the pain then decides to increase, as if to see how much you can take.Lucky Ive got a sense of humer cause I thought Id had enough.The pain is moving from place to place quickly and with more and more intensity. eventually settling back behind the eye where it will remain untill it tires of me .Maybe minutes or heavin forbid , an hour,then disappearing as quickly as it came.May God give us all healing.
Sunday, November 19, 2000 at 01:24:29 (EST)

glad i found this site. lots of good stuff. im six years into these things and im shocked at how many of us are out there.Unpredictable and scarey as XXXXXX is the only way i can describe them.
omaha, ne USA
Saturday, November 18, 2000 at 18:00:26 (EST)

Was it fate that led me here? Who cares, all that matters is that I have found you and that in that, I know that I am not alone. This means more to me than anyone may every realize. To say Thank you for this site, seems so lacking in meaning. Yet I know of no other words that would express my gratitude in the magnitude of which I feel.
Bo Kitchens <>
Suffolk, VA USA
Saturday, November 18, 2000 at 16:18:08 (EST)

Hello, Thank you so much for this site. I don't even know how many years I have suffered with cluster headaches because I have always blamed them on allergies or "that time of the month". In truth I do have allergies and it is easy to see "now" that the headaches associated with PMS and bc pills lasted for many hours and were only relieved by midol and discontinuing bc pills. I am going to my doctor monday for a physical and will discuss ch with her while there. For many years I have woke up between 5 and 6:30am with a terrific pressure on the right side of my head. The only thing I could do was get up and keep moving. I now have a routine, fix coffee, feed dog, feed cat, turn on tv news, turn on computer, start drinking coffee, take dog out side, check email(while moving between kit & bedroom), finish first cup of coffee, take dog for 20 to 30 minute walk and the headache is gone when I come home. Usually the pain is gone within 30 to 45 mins. (I also read my email after the headache is gone and I can make sense of it). I am very lucky that I don't have to be at work until 10am so I am not pressured to get ready for work when I can't think clear. Another plus is that my children are grown so I don't have to deal with people when I feel this way. For years I was a real terror in the mornings. (poor children) As you can see my headache does not last long and does not effect others therefore I'm looking for a way to prevent the headache rather than stop it after it starts. I have hypertension, am overweight, and am dealing with menopause also. Because of so much happening at once to my body I have started a daily diary to help myself and my doctor deal with my problems. It is because of this diary that I finally realised the patterns of my headache and have come to the conclusion it is ch. If anyone out there has any suggestions on preventing these headaches please let me know. Also if you have any suggestions of test I should request from my doctor I would appreciate hearing from you. Thanks for listen. Kathy
Kathy <>
Saturday, November 18, 2000 at 13:04:17 (EST)

I want to thank everybody on here for provideing Usefull information, I did not even know Cluusterheadaches existed or that there was a site about it. Until I did a yahoo search. This site was the first thing that was posting. Thanks >>>>> :P O.k, so i'm new to this "Cluusterheadaches" . For the past 2 weeks I have been getting bad headaches off and on.I really did not think anything of it..then about 4days ago I wake up from sleeping, suddenly crying like a baby because it hurt so bad. >>> " SNIFF " >>>> :( At work I notice the head aches would tease me >>>>> starting by the constant thump behind my skull or the pressure building up behind my right eye { almost in tears} Yesterday i left work because of an awfull pain in my right side of my head behind my right eye, pain sinsation on my right cheeck, and my back of the neck. I never experiance this before and got really scared. I went to the ER to have it checked out. Waited for 5 hours in the ER too hear that the Doc did not see anything wrong in the CAT Scan....The Doc said it could be "Cluusterheadaches" . I ask my self how could this be? Im only 24yrs old. Is it from smoking? from recreational drug use? sinus problems? stress? not enough exercise? What ? Please Help, I do not want to live the rest of my life like this.... :( Is this _____ crueable? I do not want to be a walking oxygen gas tank... Thumping Skull would like to REST!!!!
Peter Dinsmore <fallingraven7>
berkeley, Ca USA
Saturday, November 18, 2000 at 09:02:34 (EST)

Thanks for the information it has helped alot!! jc
Jeff Carnell <>
Lubbock, TX USA
Friday, November 17, 2000 at 11:00:31 (EST)

hi,iam 51 y.o. and have had ch for about 21 years.both my parents suffered until the day they died-my father had them so bad he was on med retirement.when he got one he sweat would literaly run off him and onto the floor i have never witnessed another human in that type of pain without seeing some type of injury..caffergot sup. seem to work on me they take about 30 min..have tried the new drugs imetrex etc but they dont work. thanks for letting me share that with you,charles
charles harrigill <>
natchez, ms USA
Thursday, November 16, 2000 at 15:58:57 (EST)

Brian, Since you didn't leave a complete e-mail address I'll answer by posting above you. One word - Indocine (indomethacine).
Bob Pahlow <>
San Luis Obispo, CA USA
Thursday, November 16, 2000 at 14:24:25 (EST)

I suffer from Hemicrania continua. where the attacks last only 20 to 30 seconds with very very intense pain.I have anywhere from 15 to 20 attacks a days. I have had normal migrane headaches since a kid but in the last 5 yrs I have developed these. I am 38yrs old. If anyone suffers from these simular attacks I would love to hear from them. Brian
Brian Parmacek <kil990>
highland p.k. , I.l USA
Thursday, November 16, 2000 at 12:50:05 (EST)

Welcome to new posters..this is directed more at the ones who do not post an e-mail address..No one can reach out and touch and I fully understand why some would be leery of leaving themselves open, so will just say to you in particular...please visit the MessageBoard and read the information there and get the feel of the support and understanding there, okay...BS, can post there and read responses without putting in an address, thereby sharing your doctors names (hoping you have a responsive one) experiences, or just vent...So glad you found are no longer ALONE...
judyw <>
Minot, ND USA
Thursday, November 16, 2000 at 10:43:52 (EST)

Male 32, suffering for just over 2 years now. Normally one attack per day which wakes me up between 10pm and 3 am and lasts for anything between an hour and 3 hours. This website has changed my life.
Mark Shepherd <>
Cape Town, WC South Africa
Thursday, November 16, 2000 at 03:26:55 (EST)

This has got to be the most wonderful reading I have ever seen. For 15 years I have thought that I was the only one who hobbled around banging my head off the walls and wishing for death. Thanks so much for the wonderful site it really helps to know I am not the only one. Hang in there everyone maybe someday the shadows will disappear.
chris d
oh USA
Wednesday, November 15, 2000 at 18:08:07 (EST)

I have had c/h for over 5+ years,i was glad to have found find this site. The only real help i have found is a shot of Imitrex to control the pain.
Greg /CA. <>
Concord, CA USA
Wednesday, November 15, 2000 at 17:04:00 (EST)

I am glad I am not alone in this periodic hell. When the devil arrives to awaken me at nite, I don't know how to handle him and just ride it out. My Dr. presribed lithium and verapanil with Imitrex Nasal Spray. The lithium isn't the best thing to be on and verapanil increases blood toxicity levels. I have heard that pure oxygen has been known to chase the devil away. Has anyone tried this? Trying to keep the devil down. Les
Les <>
Stroudsburg, PA USA
Wednesday, November 15, 2000 at 13:58:13 (EST)

I have been suffering from "headaches" that just won't go away for a couple of years now. I am 41. I have been told that cluster headaches are more male-oriented, but in the entries that I have read, I see women too. My neurologist hasn't yet diagnosed me as having cluster headaches, but I don't know what else you would call it!! I have a headache ALL of the time...pressure behind one eye sometimes, other times it is tightness in my neck and climbs up the back of my skull, dizziness ~ which then sets me into a panic....some times of the day, I am functioning fine, then all of a sudden, I get sharp pains in the top of my head. Other times (often) I wake in the night with almost like a hangover headache. I use imitrex; it works for awhile, but the headache keeps coming back. Excedrin migraine will even help take the edge off sometimes.....I have had a headache for several weeks now; wondering if it will ever go away. From all of the reading I have done, it sure sounds like cluster headaches to me! I would be glad to hear from anyone with suggestions on what has helped them. I have had my vision checked, have gone to a chiropracter and continue taking heavy doses of supplements (sure can't hurt!). I will visit this sight often, and thank all ahead of time for any suggestions that I may get. One question; does anyone else feel just a constant "pressure" in their head, as if it is just WAITING to come on again? Thanks again. Kim
Kim <>
Holland, MI USA
Wednesday, November 15, 2000 at 11:18:59 (EST)

I have been a sufferer off and on for many years. recently started up again after 6 years clean. I have always had luck with oxygen. I moved three years ago and where I am at now, they will not refill my tanks. they have put me on meds-not real crazy about taking them. Any ideas on how to get my oxygen refilled?
kathy scott <>
chincoteague, va USA
Wednesday, November 15, 2000 at 08:39:06 (EST)

Hi It is now 3 weeks of going to doctors and tests to find out what the headaches/pain in my head is. They think it is Migraines but after reading coments on this sight I think it is cluster headaches as I am also having them come and go at different times of the day. With 4 kids I can hardly function to say the least. Doctors have gave me all kinds of medicine but nothing has helped they still come back I just dont know what elce to do. Diane
diane caldarelli <>
springhill, fl USA
Wednesday, November 15, 2000 at 00:12:24 (EST)

My husband has suffered clusters for 10 agonizing years. We are desperate to find some help.
Tami Smith <>
Acworth, GA USA
Tuesday, November 14, 2000 at 19:28:37 (EST)

I am 52 years old and I have had cluster headaches since the early 80's. My father had them so I wonder if they are possibly hereditary. My episodes usually occur about every 18 months and last for up to six weeks with anywhere from 1 to 4 headaches per day. Imitrex does seem to help but not always. I take the 50mg. tabs. Thanks
Bill <>
Tuesday, November 14, 2000 at 18:37:18 (EST)

It's unfortunate that your reading this because that means that you or someone you know suffers from these insidious headaches. I'm 47 years old and have had episodic cluster headaches for over 25 years. I'm in the midst of a cycle and have been getting more attacks than normal. As I write this, I am fighting off another of 4 attacks today, one of which necessitated an injection of Imitrex. Thankfully, they help quickly, but you can only take a couple a day so one must be prudent. I guess I'm glad that there are others who understand my pain, and I wish all of you the most important thing in life; pain-free times!
Neil <>
Wheatley Heights, NY USA
Tuesday, November 14, 2000 at 14:07:13 (EST)

I am 37 years old. I had my first attack at 17. I have episodic attacks (every 12 to 18 months) that are nearly fatal. They feel that way anyway. Five times a week for three months for each episode. I never have more than one in a 24 hour period. I chew 50 mg tabs of Imitrex, but sometimes this does not work, or, another attack comes back after 4 hours. My last episide ended in September. I should be pain free until next summer. I would like to correspond with others who survive the unsurvivable as I do. Mine are as bad as it gets, well, if they were chronic, that would be worse, but the experience is transcendent.
Mack Finley <>
Chicago, IL USA
Monday, November 13, 2000 at 23:24:35 (EST)

I don't know if I ever signed the guestbook before but since I've been missing in action for the last year or so I figure I'm due. I got married in Sept. and would be deleriously happy if I didn't just rejoin the headbangers ball. When I felt a little better and was in the process of moving back home to MN I just didn't want to remember the hell. I still suffer from both migraines and clusters and no drugs work still. Now that I am back in cycle it is a reminder of how lucky we all are that DJ created this site for us. I shudder to think of how many have gone through this alone. Thank you DJ!
Nikki <>
Maple Grove, MN USA
Monday, November 13, 2000 at 22:18:41 (EST)

i've suffered for about two months. currently,iam between episodes.i've just come off of prednisone,a steroid prescribed by my doctor.iam diagnosed hypertensive over the last ten years.i hope remain ok.
luten taylor <>
miami, fl USA
Monday, November 13, 2000 at 16:00:23 (EST)

I'm 32 years old and have had these cluster headaches since I was 11 years old. The information on this website is truly unique to my symptoms. I am printing the facts for my personal understanding and to communicate in a knowledgeable fashion with the doctors. Much thanks to the webmaster!
Gregg Wieser <>
Las vegas, NV USA
Monday, November 13, 2000 at 14:47:10 (EST)

I am not sure about the clusters headache but ive been experience this headache that will not go away ive ahd cat scans thats was negative i had a shto of stadol that did not work can you please tell me what
monica woods <>
houston, tx USA
Monday, November 13, 2000 at 12:55:49 (EST)

Two weeks ago I started having these terrible headaches behind my lt. eye,how do I get rid of it?
Sunday, November 12, 2000 at 20:45:12 (EST)

Hi,Thank you so much for this web site! It's good to know one is not the only sufferer of these Horrible head pains. God bless you!
Denise A. Gaspard <>
Eunice, LA. USA
Sunday, November 12, 2000 at 17:12:19 (EST)

I have been a ch sufferer for 10 years now,i am 34 and have tried numerous drugs such as verapamil,steriods and amytriptiline having no success.i am now trying sumatriptan succinate nasal spray 20mg/0.1ml(imigran nasal spray)it seems to work if used at first signs of ch.The doctors where i live do not know much about this condition,so after going to them after about 10 visits i pleaded with them to refer me to someone who knew about these headaches,eventually i got an appointment with a neurologist after 6 months.He said i was showing classic signs of ch,pressure on my left eye,runny nose and excrutiating pain on left side of my head.I already had an idea i was a ch sufferer from an article i read in one of my wifes magazines,and an article written in a paper sent to me from my mother in law,before reading any of these you think you are dying and just waiting for the moment your head is about to explode.My local pharmacist gave me the details of this site passed onto him by a female ch sufferer in the area,you think you are the only one that suffers,i am glad to be in contact now with other sufferers it makes the pain a little bit more bearable now good luck ,and happy head banging.dave Bournemouth England.
dave small <>
bournemouth, dorset england
Sunday, November 12, 2000 at 09:36:25 (EST)

Here I am again, i quess I just need to vent . I went to the doctors on Thursday and got on Verapamil. I've always had low blood pressure, but since I've been taking so much imitrex I now have very high blood pressure. So taking Verapamil is killing two birds with one stone. Also he gave me Fiortal(CODINE PAIN PILLS) and a cyclobenzapr(muscle relaxer). That day (Thursday) I was not taking any imitrex at all, so as detoxing the imitrex out of my system(it was giving me rebound CH and possible high blood pressure headache). That day I had to dance only one time(I was lucky since they where coming every two hours and without the imitrex shots I would have to dance every two hours). It was working! That night I slept all night (haven't done that in 1 month). On Friday had big shadows but it was ok. no full blown CH. Friday slept all night again, awoke to a big shadow but took more Verapamil and pain pill and all was ok. Had two little CH(I know their is no little CH. but taking the hard core pain pills and Verapamil made them like I had drank way to much the night before headache0, Came home after work and went to sleep later in the night, then woke up with a CH and started doing the dance with the beast and had to take imitrex shot. The whole purpose of being on the pain pills and muscle relaxers was to be able to take the CH with out taking the imitrex shot. I hope the rest of the night is ok, as well as Sunday. Just a note, I stop drinking water every hour, I bet that has something to do with it. I'm now drinking every hour again(drinking water every hour seemed to work). Thanks for being here so I can vent, I'll be checking in and I'll up date you all on how its going(any thing thats working might help someone). I'll sign off Clusterhead that gets 12 or more CH.
Suzy <>
Ft Lauderdale, FL USA
Saturday, November 11, 2000 at 22:58:50 (EST)

20 years now I've lived with this affliction. Thanking God it's episodic, and that I've maintained enough composure so's not to take my own life when the demon has me down. Good to know I'm not alone.
Kip <>
Burbank, CA USA
Saturday, November 11, 2000 at 11:26:23 (EST)

I have been a cluster headache sufferer for 10 years now and am so glad that I have found this sight. If anyone has any feeback I would be more then happy to here from them.
Michelle Adkins <>
Woodland Park , Colorado USA
Saturday, November 11, 2000 at 02:27:52 (EST)

I am so glad that I have found this sight. I have been a cluster headache sufferer for 10 years now. And if anyone has any feedback, I would be more than happy to hear from them.
Michelle Adkins <>
Woodland Park, CO USA
Saturday, November 11, 2000 at 02:24:48 (EST)

I am an 80-year old man whose cluster headaches started in 1947 subsequent to extraction of a wisdom tooth. I was diagnosed as having sinusitis and was treated for same until 1964 when cluster headache was diagnosed. In addition to medications, treatment has consisted of surgery (submucus resection), diet, histimine infusions, acupuncture, and chiropractic adjustments. After heart surgery in 1975, I was free of headaches for 10 or 12 years. When the headaches returned and the doctors could provide no relief, I went to talwin lactate injections for relief. When pain comes on, I inject 1 cc. If I use more than 1 cc, I get halucinations and no relief from pain. I am rather jaded after all of these years and have quit chasing a cure. I don't consider this as a give-up attitude; it's pragmatic.
Ed <>
San Diego, CA USA
Friday, November 10, 2000 at 18:54:08 (EST)

Are there other sufferers in Lubbock, Texas - or surrounding area - that are registered in the Guest Book? Bruce
Bruce Bunn <>
Lubbock, TX USA
Thursday, November 09, 2000 at 13:20:10 (EST)

I am a 47 year male and have suffered from CH for 15 years. It seemed to start shortly after a water skiing accident in which I was knocked out but this might be just a coincidence. At first it was diagnosed as Herpes Shingles that were not manifesting on my skin. The doctor had no clue, obviously. I have tried chiropractors, was treated by a holistic accupuncturist for almost a year and finally found a local Neurologist specializing in headaches named Dr. Judy Lane. She is the doctor who treats Denver Bronco Terrell Davis for his migraines (remember the Bronco/Packer Superbowl). I have tried Indocin, Verapamil,Ergomar and most recently Topamax. The Topamax seemed to break the cycle but eventually lost its effectiveness resulting in a longer than normal cycle. The Topamax also resulted in reduced appetite and considerable weight loss. Nothing works as well as Imitrex injections but I have had some success with Imitrex and Zomig pills. I have had minor success with Oxygen but the headache always seems to come back within 1 to 2 hours. My cycles normally start in the spring and last 10 to 12 weeks but the last on lasted almost 5 months. I exercise regularly but nothing brings a headache on quicker than strong physical exursion so when a cycle starts I stop the exercise which makes me feel even worse. My symptoms have always been on the right side but I have just started another cycle and everything is on the left side. I'm particularly scared about this cycle because I have never had one this time of year and the shift to the left side of my head really worries me. Like everyone else I go through the periods of severe depression, suicidal moments, fears about the effects on my family, the negative impact on my job performance and the never ending question about will this ever be over? I'm glad I found this site and pray that we will all find relief soon!
Doug Ideker <>
Arvada, CO USA
Thursday, November 09, 2000 at 11:56:31 (EST)

I'm 38 years old, male, and have been suffering sharp, dehabilitating, headaches for the last three years. These are like someone has just inserted a hot poker directly into my right eye. From the first time, I knew that something new was going on...this was nothing like any headache I'd ever had (and I don't think I've ever had a migraine). I looked for help, was told that sinus irregularities were probably responible, had an MRI done, and yes, irregularities completely explained why I should have headaches on the left side of my head (where I never have them). So I've been assuming I've had a sinus headache condition till tonight, mainly because my nostril always gets stopped up right before a headache comes on. I go straight for the dristan...That is the dance. It doesn't help, but it clears the stopped up nose and that's something. And yes, the beast comes when I sleep. That's not the only time...late afternoon and late night are other times the beast comes---which seems smoking related because I smoke way too much. My particular form of self violence is too imagine I could scoop my right eye out with a spoon and see what's wrong. But I know its gonna go away. It's gonna go away in 90 minutes to two hours. Its always that way. I often thought that was how long it took for the aspirin to take effect. I have not noticed any periods since these headaches started that were free of headaches. They keep coming...1-2 most days, almost predicatable. I think its really hard to tell the cluster symptoms from the symptoms of a sphenoid sinusitus condition...but the pain so often seems like its centered right in the middle of my eye. (The beast is hot poker). The base of my right nostril is starting to stop up right is the time (2:00 AM). I have about 10 minutes. If this doesn't have anything to do with the sinuses, then what's the stopped up nose all about? I've had all the antibiotics to kill anything living up there (sinuses are supposed to be a sterile environment), but the stopped up nose remains a constant in these headaches. So I'm running to the dristan now, afterwhich time I will try to find some position where it won't hurt so much. There is no such position, but changing position changes the pain and gives me some hope there's a good position. So I fidget alot. I would have never thought my pain was mild until I read some of your entries. This pain makes me cry, hurts worse if I do. Somethings that help a little is hot or cold compresses..doesn't matter which, breathing steam, facial massage...none of this makes it stop, it just makes it a little better. When its really bad, my teeth even hurt. I went to the dentist. Yes I should floss more, but nothing in my mouth is causing this. Well I just read all of your messages...I'm convinced I'm lucky that my pain is not worse and so far anyway, have yet to go to the basement for a sufficiently long drill bit....I thank you for this web-site and will further investigate whether these headaches are cluster or sphenoid sinus before I post again... Simon
Simon Haller <>
Portland, OR USA
Thursday, November 09, 2000 at 02:22:32 (EST)

I'm 38 years old. I've had CH for 15 years now, first migraines at age 16 then turned to CH. I get CH every two years, lasting up to two months. I'm in it now, been 1month and three weeks and i don't see it stoping any time soon. I having them up to 6 to 10 times a day and getting 4 hours of sleep a night (every time i sleep they come on an hour later). I just can't take it any more! I've been taking the imitrex shots alot now and have max out my visa card. Tried the oxygen but not much help there. Also been getting acupuncture once a week with herbs(help out at first but now that i'm in the thick of the CH nothing helps but the imitrex shots), I will try the imitrex tip. Thank god i found this site otherwise i don't think i could go on. Also this time around i've been vomiting, so right now i'm also trying drinking water every hour(Boy, your not kidding about using the bathroom alot!). I'll be looking in Suzy Elwood
Suzy Elwood <>
Ft. Lauderdale, FL USA
Thursday, November 09, 2000 at 00:41:31 (EST)

Benn having CHs for about 3 years. Am now 38 and having an episode this month. They usually last about a month to a month and a half. About the first week they are fairly moderate but the last 3 weeks they are pure H---. They hit me at 1:00 to 1:30 AM and last until about 4:00AM. They are located in my right temple and right eye. My Dr. prescribed Enderol 40mg twice daily and that has helped some. I have put a hot wash cloth on my head, layed on a cold floor, stood in a shower with HOT water running on head and it all has helped some but not nearly enough. I just hope for a cure very soon. Have not tried any of the other meds. talked about here but will talk to my Dr. real soon. Thanks for being here, I will check back often and see if there are any new "cures". Feel free to e-mail me anytime if there is anything I can do to help anybody.
Mike Henderson <>
Pioneer, LA USA
Wednesday, November 08, 2000 at 23:01:24 (EST)

I have been getting my headaches for about 5 yrs now. I am now on my 4th doctor and she is good I told her all of my symptoms and she said you have cluster headaches. All the other doctor's told me they were stress headaches and to just take tylenol. The doctor has given me low blood pressure medication to try and prevent the headaches and also migrazone. It's helps but not enough. My friend just told me about magnesium and B-2. I think i'm going to try it out and see what happens.
Kris Paulson <>
Redondo Beach, Ca USA
Wednesday, November 08, 2000 at 22:36:38 (EST)

Hi, I am just went through a CH cycle last week. And I use oxygen mostly. I saw a news about cluster headaches with sleep apnea(, I have the same symptom and usually wake up at midnight.So I went to a sleep clinic and get checked, and try to use cpap (continuous positive airway pressure).I plan to buy one, if anyone out there knows about this, let me know, thanks!
Kaedar Ferng <>
Taipei, Taiwan
Wednesday, November 08, 2000 at 21:54:24 (EST)

Howdy. Finally I place where I don't have to try to explain what's happening to me. Haven't had an episode in 18 months, but now they're back! Pretty mild so far, but am experiencing lots of dental pain - DDS said there was nothing wrong. Tried Imitrex (nasal) for the first time - halted, but didn't get erradicate the pain. Now I've had a lingering shadow for two days. Doc wants me to try Prednisone, but am reluctant to after reading posts. Tried it a few years ago (different doc) and it didn't seem to have any effect. Thanks for sharing my misery! It's good to be understood.
John Milan Dovic <>
Marietta, GA USA
Wednesday, November 08, 2000 at 17:08:26 (EST)

I never knew how many people go through the same thing I do night after night. I've been led to believe that I was overreating to the pain. Because of that, I try to hide when I get them. I'm embarrassed when anyone sees me during a episode. I'm glad I'm not alone. Tears are flowing as I'm writing this. Thanks for creating this site. Maybe non-suffers should be reading all the entries. They need to understand!!
Chuck <>
Omaha, ne USA
Wednesday, November 08, 2000 at 16:40:40 (EST)

Hello, Just would like to pass some information on. However I have recently been diagnosed with RA/Fibromyalgia and have has long standing Hoshomoto's disease. I had bad headaches even as a child and would constantly end up in the nursing office on a matt. At that time they told me they were nervous H/As. They had really gotten quite bad during the last 3 years. 90% of the time my headaches come in my sleep, occasionally they have occured during the day. I understand how painful it can be. I end up throwing my toes up with them too. At time I too felt that I was dying. But my ENT (ear nose throat) told me they were CH, but my Endrocrinologist diagnosed them as either vascular or migraine. Anyway he put me on Norvasc. Which has greatly helped me. Norvasc just like it's name can be used for the heart and people that have vascular type problem, diabetes. etc. I still wake up oh about evey month with the start of one, but I quickly go and take a Maxalt. It works. Hope you all get some relief. I still have headaches but not that intense, anymore. Thank the dear Lord. Hope this might be of some help to others. I do feel that these headaches are part of an underlying problem. Such as with my case. Which left undiagnosed for a lot of years. Remember though....that is why the call the medical field the practice of medicine. Working in the health care industry myself I say you must get involved in your own health care and not to depend on doctors.
Jeannette <>
Wednesday, November 08, 2000 at 14:32:55 (EST)

I'm 39 and have had CH since I was about 17. Throughout the years I've had numerous treatments wisdom teeth removed,blood pressure medications, oxygen etc. I just found your site and thought I'd let everyone in on something that i just discovered in January of this year. While I was in the hospital for an unrelated matter, I happened to have my clusters. An internal MD gave me 50mg daily of Vioxx(normally at lower levels for arthritis) and I haven't had a full blown CH since. Ocasionally a bit of ache in my ear on the right side, but nothing worse. Hope this may be of help to some you, I know one thing doesn't always help everyone, but maybe a relief to some. Your family MD can prescribe it. Best of Wishes Steve
Steve Crumbacher <>
Pinckneyville, IL USA
Wednesday, November 08, 2000 at 13:27:38 (EST)

hi there! my name is jerry. im 24 years old and i have suffered from ch for 2 years already. last week my dad took me to the er 2 times. i had never seeing him cry before. (burst into tears...) i cant take it anymore!!! why me!!! im sorry but i cant go on writing for now.
jerry <>
monterrey, nl mexico
Tuesday, November 07, 2000 at 13:52:23 (EST)

This is a great site, it's so good to know you are not alone.I have suffered with CH for 22 years, the first 10 my doctor treated me for sinus problems, and he just couldn't understand why I used to sit in his surgery and sob and tell him I can't take anymore!!I seem to be a classic sufferer in that my attacks usually start at 2.00am and last all night. Imigran injections are the only thing that I have tried that works. I have now obtained oxygen and will try that next time. I am in that time when I am waiting for my next cluster to start and know it won't be long- half of me hopes it never happens and half just wants to get in over with so that I can get on with my life, make plans, go on holiday etc.The worst part of CH is that nobody understands, nobody has ever heard of CH even my doctor still refers to my "migraine" and he thinks I am being dramatic when I tell him how bad the pain is!and he thinks I am unreasonable when his suggestion that perhaps I should take aspirin instead of Imigran are met with panic. Things can only get better!
susi <>
Manchester, UK
Tuesday, November 07, 2000 at 11:42:45 (EST)

Hi, I am 40 years old and I have been having extremely bad headaches since 1993. I have had two car wrecks and both times my head went through the winshield. I have went to the emergencey room in the past but demoral didn't stop it and the one time I was given Imetrex it only made it worse! I have been to several doctors. Some suggested an MRI or to go to a headache clinic, but since we don't have insurance that was never an option. The headache clinc in Birmingham, Alabama, first time visit(with no insurance) is $820.00. An MRI-$1500.00. I have tried narcotics, blood pressure pills(even though my b.p. is fine) anti-depressants, muscle relaxers, migrain medicines, inflamatory drugs, herbal drugs, and every kind of OTC medicines. I went to a chiropracter and he made things worse too. My headaches are always the same...The back of my neck starts hurting. Then it moves to the right side of my head and eye. I was first diagnosed with migrains then cluster headaches. My symtoms are a little different on both. Light or loud noises don't bother me. I can usually tell when they're going to happen. Once I get one, they last at least nine hours and have went on for days with no relief. I have taken up to 6 fiorecets, 2 at a time along with a maxhault every 2 hours. I've tried sitting, laying down, ice packs nothing works! I just have to wait it out. And like most of you nausea is always bad. I have even rubbed sports cream on my temples. One more thing...I have these headaches almost every week. I hate the thought of having these headaches the rest of my life. I wish something would work for me. Thanks for listening!
Tuesday, November 07, 2000 at 02:28:17 (EST)

I am an episodic CH sufferer
Nick <>
Tempe, AZ USA
Monday, November 06, 2000 at 22:44:48 (EST)

A little story...I woke up one night about 10 years ago, when I was twelve. I heard this low moaning and sobbing coming from the kitchen. I got out of bed and see my father, 20 pounds lighter from not sleeping or eating for about 3 weeks, on his hands and knees on the kitchen floor rocking, sobbing and in more pain than I can even comprehend. I ran to him and hugged him, and saw for the first time my father as no young girl should. That night he told me that if it weren't for me and my family, he would kill himself right then. Feeling totally helpless, I simply told him I loved him and walked with him up and down the hallway for the duration of the three hour headache... My dad is a cluster headache sufferer. He has been without for a while now and just the other day I went home for a visit and I see his eye drooping and his nose running. Everyone in our family knows what that means...the headaches are back. I came home from work tonight and decided to see what I could find on the internet. I called him as soon as I got to He was actually having the start of one when I called him...(I could tell because he kept sniffing and he sounded exhausted from the lack of sleep for the last week or so.)I am so glad I found this site. I printed off some of the personal accounts from other sufferers to show some people who know my father goes through this so they can actually see how it affects the lives of other people, it is not a "headache" in any sense that I or any other non-sufferer can imagine. When I told my dad, he was actually excited to go to work tomorrow to take a look and see what he can read here. I just thought I would let you know that not only have you educated me a little and hopefully others who I refer to this site, but you may brighten my dad's day and maybe might even help him find some relief from the pain no one but each of you can understand. Good luck to each of you in finding a cure and relief......
Monday, November 06, 2000 at 20:55:44 (EST)

I have been getting cluster headaches since I was 19 I'm now 35.I was only diagnosed 4 years ago I curently take prednisone they say it shrinks the blood vessals to reduce the swelling in the brain the tell me thats what causes the pain. For me it is the only thing I have found that works.I'm very thankfull for this sight since I would like to find something more natural that works and doesnt put me in such a bad mood. My wife would be thankfull also.
Mike <>
Westerville, ohio USA
Monday, November 06, 2000 at 19:14:37 (EST)

Hi. My mom discovered this site tonight. It is a blessing. I am soon to be twenty. I have been suffering with migraines since I was seven years old. They were incredibly severe. They still are. However, the vomiting has at least stopped. Now, it's blurred vision, dizziness, terrible pain if I am exposed to light, and a state of mind-altering pain no one in this world could explain. (Except all of you, of course!) I am so glad to be able to see how many others are feeling like I am. I am planning on being a high school english teacher. I already miss school a lot because of my migraines. I miss work too. I feel so stupid telling my boss I can't come in because of a headache. I just feel like people don't understand. I've went through several doctors. Preventative meds didn't help. One doctor told me migraine meds were narcotics and she wouldn't prescribe them for me. Finally, I have found a Dr. that has enough sense to give me the meds I need to fight my attacks. Thank God for her!!!!! Well, good luck to everyone. I'll be praying for you all!!!
Amanda <>
Cottage Hills, IL USA
Sunday, November 05, 2000 at 23:49:46 (EST)

Hello, Ive had cluster headaches since I was 13 and am now 21. At first I thought they were migraines like my mom and only recently realized they were CH. Has anybody ever tried balms on their foreheads? Sometimes this balm called Tiger Balm works on my headaches but too much on the skin can actually burn it... any suggestions? What about acupuncture? Has it worked for anyone??
EG <>
new haven, ct USA
Saturday, November 04, 2000 at 18:07:03 (EST)

my mom who is 62 suffers from ch and would like to know if there are any doctors in the new york or long island area that deal with this disease. please let us know.
sue <>
Long Island, ny USA
Saturday, November 04, 2000 at 16:31:07 (EST)

I've had clusters since 21 yrs. old but didn't hnow what they were until about 15 yrs. ago when a headache specialist moved into the area and I was diagnosed. I am now 51 and still have them. Up to that time they were treated as allergic symptoms, but there was nothing I was allergic to except lying down after a hard day or having a drink containing alcohol. Tried lithium but hated the side effects. Most other meds are too expensive, so I do without knowing the attack will hopefully end soon.
Ray <>
Maitland, FL USA
Saturday, November 04, 2000 at 15:32:29 (EST)

My son was having migranes about a year ago. Took him off MSG which is in nearly all packaged foods (see Headaches went away then tremors began about 6 months ago. EEG MRI and blood tests OK. Neurologist in SF bay area put him on Dilanti which worked for a few days. 1 month ago tremors every hour to hour and a half are back. Took him off Dilantin. Trying to reduce MSG further now with him on diet of water, steaks and potatoes. What to try this for 3 weeks. Has any one had this type of problem due to CHs. He feels like pulled to one side, left arm will twitch. Lasts for about 15-20 seconds. Happens once every hour and half. Neurologist number 2 just gave up: ie. "It's not epilepse it's stress related". Any one have these symptoms? Thanks TG.
Thomas Germano <>
Arcata, CA USA
Saturday, November 04, 2000 at 14:39:39 (EST)

I am an R.N. and a cluster sufferer. I have a supervisor that doesn't understand or even try to understand clusters. I was hired for day shift and recently they have started making day shift nurses work some 3-11:30 shifts. This throws off my sleep pattern completely when I am in a cluster cycle causing me to have more and more headaches. Then I get to the point I am taking so many Zomig, Imitrex that My blood pressure shoots up and my pulse goes extremely high. There seems to be a control issue with my supervisor and she just says "Oh, well, you have always had headaches. My Doctor has written 2 letters asking her not to do this when I am in a cluster cycle but she ignores them. I am at the end of my rope and can't afford to go out on disability so I take about 3 to 4 ZOMIG A DAY JUST TO FUCTION. Is there anyone out there that can advise me on what to do. I work at a State facility in S.C. I don't understand the disability laws here but maybe someone out there does. Please help.
nancy collins <>
lexington, sc USA
Saturday, November 04, 2000 at 09:48:29 (EST)

Wicked site! I've been CH for about 7 months. Everything was going great until 7 months ago. I'd got through 10 years of guinea pig testing for ITP, a little known (in the UK) blood disorder with zero benefit to me, so I said F you to the doctors and went it alone. I was OK until CH and now my job which I love is looking to be at big risk. Suicide is out there and getting closer with every episode. Now there's others like me! Kickin
Mikey <>
Reading, Be UK
Saturday, November 04, 2000 at 08:19:08 (EST)

I am 67 years old and except for the CH am in very good health and physical condition. My headaches began about 15 years ago with the first period followed by a 5 year remission.Since the the remissions have been 1 or 2 years. The headaches are classical CH much as described by most others on this boad.The pain is severe just as we all experience.I have avoided drugs, but I have tried Oxygen 2 years ago. It helped, but was more hassle than it was worth.I now use ice packs and exercise.With the knowledge that the pain will end in about 30 minutes,I can deal with it. Thanks to you who maintain this site and those who post here.Simply knowing about this thing helps deal with it.
Ray <>
Fairfax , VA USA
Friday, November 03, 2000 at 21:48:51 (EST)

I have had these horrifying clusters now for about 12 years. Presently, I have had to deal with them for around 3 months straight. I am petrified to sleep. I would rather be a walking zombie than to attempt sleep. The pain is so unimaginable. It is almost like they have a mind of their own. The seem to mock me sometimes. If there is a period when they are not present, I may get what I call, "surges" of them. Kind of like a reminder to me. Their way of saying "Don't forget about us now". I have them in my right side. When the time comes, I am a whimpering little baby, screaming and writhing in pain in the fetal position, banging my head on anything. I have hit my head so hard at times that I cause bruises. So much pain. I could have my appendages ripped from my body during a cluster and the pain would not compare. I found out that I was "blessed" with these things about 10 years ago. I thought they were a bad hangover. Now, I am alcohol free for around 9 years and I haven't smoked for over 4 years. Sometimes oxygen help. Sometimes it feels like oxygen pisses them off and they increase with pain and stay longer. I am so tired but I am afraid to fall asleep. No one can do a thing during these things. Imitrex seems to help, sometimes I guess. Or at least I would like to believe, just like the oxygen. I have thought about accupunture. I don't know. I am desperate and I will try almost anything. In the past I have thought that the only way to stop them is to sleep....eternally. I lost a great fan by his own hand a few months ago and my mindset has changed about that. I saw how much pain he caused everybody. Now I don't think like that. Or even joke. That is not the way. I can only pray that there will be something or someone that can help to just stop the pain. Even if only for a little while. I burst into tears when I found this site. I have never found anyone else who has experienced these clusters. I will spend a lot of time on this site for now on. I am thankful that I now know of someone else that suffers from the same pain. You just can't describe it to anyone who hasen't felt them. The closest way I can describe them is like having "Brain Freeze" (like when you eat icecream too fast) but at least 10 times worse and they last much longer.
Marc <>
Columbus, oh USA
Friday, November 03, 2000 at 11:02:34 (EST)

OK, hopefully this one will post right. Sorry for the duplicate. Started as migranes a few times a year, changed into daily "tension type" headaches. Just recently (last year or so) began getting cluster type too. Yes, I really have all kinds of headaches, every day of my life. I just recently (by accident) discovered something that helps me with the clusters. Taking melatonin at night about 1 hour before going to sleep. It's over the counter "natural" med I tried using for jet lag. Melatonin regulates your biological clock; irregular biological clock is thought possibly contributes to cluster headaches. Makes sense, right? I really believe this is working. I stopped taking it for a while, the headaches came back and just last night I realized that maybe that's why. I took one before bed last night and have been headache free since (which is unusual because usually I wake up from them). My next step is to try to get off Excedrin. I take it 3 times or so a day and know that I'm addicted, but can't stop because of the unberable headaches that don't end if I don't take anything. Has anyone else had any success in this, and if so, was there another med. that you used instead of Excedrin?
Julie <>
Friday, November 03, 2000 at 10:13:07 (EST)

Thanks everyone for your support. I have had headaches since I was 7 years old. Started as migranes a few times a year, changed into daily
Julie <>
Friday, November 03, 2000 at 10:08:00 (EST)

Age 45,suffered with clusters for the last 8 years
Steve Leary <>
Manchester, UK
Friday, November 03, 2000 at 03:38:33 (EST)

I'm happy to see I'm not alone. I have had a six month run with these headaches. I never know when they are coming untill I get a weird cool feeling behind my left eye. Then it hits like a hammer. I'm always sure its a brain tumor, when I have one, because the pain is so bad. I hope to one day be free of them. Good luck to all of you who suffer with these headaches.Sharon
Sharon Roose <>
Woodland Hills, Ca. USA
Thursday, November 02, 2000 at 23:31:42 (EST)

I started suffering cluster headaches just a short time after having had a hysterectomy. I thought maybe they'd go away after I'd gotten used to taking hormone replacements, but no such luck. It's been 10 years and they're still here. Sometimes I'll have one that lasts for a weeks time. Then I'll go for maybe a whole month before having another one. Who knows for is in store for the next day.
kim <>
payson, az USA
Thursday, November 02, 2000 at 03:23:35 (EST)

Just starting another cycle, feel like crying. Vomitted twice today, first RBD (Real Bad Day). Have a vacation in a few weeks, feel like it's over before it starts! Been suffering for 12 years, every 16-18 months. Every time they start again, I cannot believe I am a sufferer and I cannot believe how bad they hurt - it's incredible! The worst part of all is that my life gets up-ended for about 2-3 months. The headaches and the meds make me feel like I am stupid all the time! Permanent fog all the time! - All Bummed Out!
Craig A. Colligan <>
Newport Beach , CA USA
Thursday, November 02, 2000 at 00:04:47 (EST)

Hello all! Am I glad to find this site. HELP!! I am a 45 year old male and suffer 4-5 attacks per day. They last approx. 30 minutes and just disappear...I walk around with an ice bag on my right temple, my eyes tearing and nose running in a pain panic that only you guys know!! My doc prescribed a drug cocktail consiting of verapimil, depokote, dexamethasone, vicodin, imitrex (tabs, spray and injectable), amerge, OX2 and indocin. Within several weeks, my CHs disappeared ... as I strolled around Mars. Make a long story short, I quit all meds and the Clusters are back with a vengence. I look forward to surfing this site and seeing what less invasive remedies all of you have experienced. I will try the WWW method this evening. Good to be here, Larry
Larry <>
Nashville, TN USA
Wednesday, November 01, 2000 at 18:57:28 (EST)

Skull crushing pain for 11 years now! I'm honored to be part of a groupe of people that understand real pain. I can say one good thing for you all out in cyberland about the cluster, is that when it's all over, it feels so good!
david guillemette <>
manchester, me USA
Wednesday, November 01, 2000 at 18:46:11 (EST)




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