Cluster Headache guest book
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The response to this website has been so fantastic, I've had to seperate some of the messages. There were so many wonderful posts from suffers around the world, that it was taking entirely too long for the page to load.

Below are the guestbook entries from October 1st-31st 1999. Thank you for your continued active involvement in this site and keep those guestbook entries coming!


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our son in-law has them and we were researching the subject.
ron &beryl <>
corinth, me. USA
Sunday, October 31, 1999 at 21:17:47 (EST)

Hello everyone. I have been a clusterhead for 8 years. The Beast attacks me during the start of Fall and the end of Spring. My attacks never last more than an hour, except once when I went to the emergency room and was finally diagnosed. But always last at least 45 minutes. I was researching a new med my doc prescribed (indocin) when I found this site. For a male it is hard for me to admit, I cried. I am sorry that we are all sufferers of this nightmare. I have always told people that I would never wish my pain on even my worst enemy. But I'm glad I found you all. I have been prescribed all of the typical medications at one time or another. So many I can't remember all of them. I can't even calculate the numbers of lost work hours. Typically if the Beast attacks at work, I'm so drained from fighting, I have to go home for the rest of the day. With every new med prescribed I always have that feeling of hope that this time I will win. But so far, I have only suffered defeat after bitter defeat. This is why I am so very greatful I now have this site to turn. THANK YOU FROM THE BOTTOM OF MY HEART!!!! Bobby Heaton
Bobby Heaton <>
Rocklin, Ca USA
Sunday, October 31, 1999 at 09:39:51 (EST)

Great Site! Got more info here than I have been able to find in the last 5 yrs. Thanks. Had clusters for 30+ yrs. Didn't know what they were till about 6 yrs ago. I use 100% oxygen, set dial at 7 or 8 and breath though face mask. It's been a life saver for me, works almost every time. Takes 5 to 10 minutes to take effect. First few times I tried the oxygen it took longer, and I almost gave up on it. the first time it took about 15 minutes before I got releif. Now I get releif in about 5 minutes. If you haven't tried the oxygen see your doctor and get some. good luck
Ken Hofstetter
Ontario, Canada
Sunday, October 31, 1999 at 01:20:23 (EDT)

Hello, I have suffered with CH for 22 years.i`ve taken ergotamine,cafegot,verapamil and imitrex(i had a bad reaction to imitex).For the past 3 years i have taken inderal every day ,i have only had 4 attacks ,and thats fantastic giving my medical history.when i feel a attack coming on i quickly take a very hot shower ,with the water hitting my neck ,the hardest thing to do during attack is to relax ,if you can it really helps
s.anderson <>
wakefield, ri USA
Sunday, October 31, 1999 at 01:13:26 (EDT)

I've suffered with headaches for about 10 years.
Seth Kurtzberg <>
Scottsdale, AZ USA
Saturday, October 30, 1999 at 22:38:12 (EDT)

I have been experiencing cluster headaches. from what i've read it happens mostly in men. i'm female. i try to handle it myself with motrin, etc. is there any immediate relief?
margie <>
middletown, ny USA
Saturday, October 30, 1999 at 15:04:32 (EDT)

Hello, I've been a cluster sufferer for 21 years. At this time I am not having any, but this is the time of year that they start. So I think I'll be back soon. A friend of mine sent me your address, from what I've seen so far I will have to be sure to thank him. At least I know now that there are others.
Pete Lauretano <>
Tualitin, Or USA
Saturday, October 30, 1999 at 08:32:31 (EDT)

Hi! I discovered this site about a week ago and I can't believe there are so many of us out there. I've had chronic clusters without remission for 3 years. I couldn't understand what was going on with me until after searching the web for about 3 months finally found a list of my symptoms. My neurologist of 2.5 yrs refused to diagnose me with clusters because I'm female. He wasn't even listening to my symptoms. I've been on at least 20 different meds and nothing helped. I'm on my 3rd. neurologist and on my first visit he said you have classic clusters....finally, someone that didn't think I was a drug addict!! I've been on Lithium for about 2 months now and I'm down to about 2 nights/week of pain and sleeplessness as apposed to 6 to 7. I am concerned that they haven't gone completely away as my Dr. implied they would but at least I have gotten more sleep lately than I have the past 3 yrs. However, I still dread the night and going to sleep. They never happen at work or when I'm active. I was wondering, does anyone else have periods or maybe all day of the tingling, burning an episode is coming on but it doesn't manifest? I still have that even on the Lithium. Anyway, I'm very thankful for this website..Thank God for you all. Here's praying for a cure.
Kathy <>
Carson City, nv USA
Saturday, October 30, 1999 at 05:58:30 (EDT)

This is such a blasted mysterious ailment, I cannot be 100 percent sure that what I suffer from is cluster headaches. However, after two years' research, three doctors (including a neurologist and CT scan), and studying sites like this, I feel I have 90-95 percent of the commonly acknowledged symptoms. I am a Clusterhead, I'm quite sure. Started about two years ago, lasting only six weeks or so; went away completely for a year; came back and lasted about six weeks. Went away completely. This year, it's back with a vengeance. For some reason, I was relatively pain-free in August. But since September barely a day goes by where I don't experience either a "shadow" or the real deal. I have tried Midrin, Verapamil, Amitriptylin, regular aspirin, caffeine-free aspirin, you name it. I won't go into all of my symptoms, since I share almost all of the ones listed elsewhere in this site. I WILL explain how I seem to differ from most Clusterheads: Once I fall asleep, I NEVER wake up in the middle of the night with a headache. I would NEVER consider hitting my head with a telephone or anything else while I'm suffering; I can't bear the thought of even TOUCHING my head during an attack. But don't misunderstand -- they are much too painful for me to simply lie still. What else have I tried? New eyeglasses ... cutting back on smoking and drinking ... I even moved 1000 miles to a new state. I find that drinking and smoking aggravate an attack, but I don't think they really precipitate an attack. Don't know what else to say. Clusters, as you all know, really suck, and not just because of the pain. They inhibit your entire life because, if you're like me, you have no desire to schedule trips, social events, or anything that involves leaving the house because you dread the thought of an attack somewhere away from your bed. Cheers.
John Haakenson <>
St. Paul, MN USA
Saturday, October 30, 1999 at 00:06:40 (EDT)

I am a 65 year old female with CH. I was diagnosed with Cluster Headaches in 1986. I had developed a severe headache on the right side of my head, Horner's syndrome, tearing eye & stuffy nose. After 8 days in the hospital and every test imaginable I was diagnosed with CH. I went to U of PA for a second opinion, and it was the same. I was headache free until 1993, when I developed a stuffy nose and a very bad headache behind my right eye. Oridinarlily I would think that this was a "sinus" headache as there is a fullness in my ear, pain over my eye and at the back of my neck. The vein on my forehead is distended. I was put on the usual meds and finally found that Imotrex gave me relief although it was only temporary. Prednisone finally broke the cycle. I was headache free although I had many nights that I would wake up with the "stuffy" nose on the right side. Doing some research I came across an article on headaches in the Time Life Book. I will quote "Also being tested for its effects on cluster headaches is cimetidine, better known by its trade neam of Tagamet, the drug widely used for ulcers. Cimetidine helps ulcers by blocking histamine, the body chemical that causes the release of stomach acid and also causes noses to be stuffed up and blood vessels to expand. Researchers testing the drug found that it also blocked the swelling of blood vessels in the head: presumably it could prevent the arterial dilation that causes migraine and cluster headaches." I got a RX for 800 mg and break them in half. I take one when this stuffy nose wakes me up during the night and within 15 minutes it is cleared. For me it has been very helpful. You can get 200 mg over the counter without a RX. My daughter gets migraines, and I told her to try it, but she said that it did not help her. I also have found that if I feel one lurking around, that a heating pad will help if applied to the back of the neck. If anyone tries the cimetidine and finds that it helps, please post your results, as I have not found anyone using this medication. Claire
Claire Chetirkin <>
Dagsboro, DE USA
Friday, October 29, 1999 at 21:35:31 (EDT)

Hi all. I got this cluster page from our local paper. Hopefully I'm not taking up your time. From what I've read I'm a MINOR sufferer. My headaches appear very very quickly and seem to go away either in a matter of minutes and sometimes in a couple of hours. But not all day nor all night. I do feel for you that do suffer with those. I do get migraines that last long times like that. But these "little" headaches I get seem to wipe me out more than those migraines I get. Not sure what else to write here, so I guess I'll sign off for now.
Joan <>
Kissimmee, fl USA
Friday, October 29, 1999 at 09:01:57 (EDT)

A lump starting from the size of a pea and rapidly reaching the size of a walnut half appears above my right eyebrow since the onset of my clusters in 1973. It only lasts 2-3 hr,s then subsides as if it were never there. Dr got out of bed at midnight to view it in his office, marking the area with a ink pen for farther investigation, but of course it was compleatly gone by next day. Talking with other professionals all said it was an ignimia, it has been a source of amazement to those who have watched it grow in front of thier eyes, and then to compleatly dissapear as if never there . All I feel is pressure and embarrasment because it is so apparent, and I don,t wear bangs to cover it. I feel it may be related to my clusters somehow. It NEVER comes during a bought, and my clusters are ALWAYS left sided. Have you ever heard of this in connection with cluster sufferes? If you want to know more feel free to ask as I will do what I can, Any clue, any idea, to help rid us of these monsters. Sincerly Donna.
Donna Ackley <>
Emmett, ID USA
Friday, October 29, 1999 at 04:32:45 (EDT)

An odd lump starting aboutb the size of a pea And growing within 30-45 min,s into the size of a walnut, for no apparent reason, in front of awestruck people and Dr,s, appears above my RIGHT eyebrow at (whenever) It has been checked out by professionals and said to be an inginma. It really dos,nt hurt just a bit of pressure and embarrasment for me. My clusters are left sided and these lumps never come up during a bought and not to often yet I am courious if they may be experienced by other sufferes . Have you ever heard of such a phenomina Dr.? Want to hear more I,d be happy to anwser more questions. This might be important in the study of these monsters.
Donna Ackley <>
Emmett, ID USA
Friday, October 29, 1999 at 04:11:44 (EDT)

An odd lump starting aboutb the size of a pea And growing within 30-45 min,s into the size of a walnut, for no apparent reason, in front of awestruck people and Dr,s, appears above my RIGHT eyebrow at (whenever) It has been checked out by professionals and said to be an inginma. It really dos,nt hurt just a bit of pressure and embarrasment for me. My clusters are left sided and these lumps never come up during a bought and not to often yet I am courious if they may be experienced by other sufferes . Have you ever heard of such a phenomina Dr.? Want to hear more I,d be happy to anwser more questions. This might be important in the study of these monsters.
Donna Ackley <>
Emmett, ID USA
Friday, October 29, 1999 at 04:08:52 (EDT)

An odd lump starting aboutb the size of a pea And growing within 30-45 min,s into the size of a walnut, for no apparent reason, in front of awestruck people and Dr,s, appears above my RIGHT eyebrow at (whenever) It has been checked out by professionals and said to be an inginma. It really dos,nt hurt just a bit of pressure and embarrasment for me. My clusters are left sided and these lumps never come up during a bought and not to often yet I am courious if they may be experienced by other sufferes . Have you ever heard of such a phenomina Dr.? Want to hear more I,d be happy to anwser more questions. This might be important in the study of these monsters.
Donna Ackley <>
Emmett, ID USA
Friday, October 29, 1999 at 04:08:51 (EDT)

Just found this site today! Thought that I was pretty much by myself, with my pain. Nice to know I have alot of company. Two nights ago my tour into hell started again, I'm going to try the water trick. Thanks for having this web site, it makes a difference not being alone, or trying to explain to someone.
John T. Sergi <>
Depew, NY USA
Thursday, October 28, 1999 at 16:59:19 (EDT)

I have been a Clusterhead since 1985. It took until 1996 for a correct diagnosis to be made. Now I have found this website I at least feel that there are people who understand the problem even if there appears to be no real solution as yet.
Michael John <>
Abu Dhabi, UAE
Thursday, October 28, 1999 at 14:14:38 (EDT)

Has anyone else tried Sansert. It seems to help the acute pain.
Krista <>
pittsburgh, pa USA
Thursday, October 28, 1999 at 13:49:04 (EDT)

I am now 55 years old and have had CH for 35 years, every year for three months. As of two years ago, I no longer seem to be sufering with the Beasts. When I first got them the conventional wisdom was that women didn't get CH and therefore went through hell not just with the pain but with my family and friends thinking I was just using my head as an excuse to avoid doing things. Two children later, and no Beasts during pregnancy, I was taken to Mayo Clinic by my almost out of patience husband and a father who thought I needed a straight jacket, where I was finally diagnosed with CH. Just knowing that I would now be taken seriously was wonderful. Not until 10 years later was I given a Lithobid and Prednisone combination which helped but my savior was Oxygen Therapy. My Mayo Doctor did tell me that I would porbably not get the Clusters after menopause, which seems to be the case. As I looked the messages here, tears made it difficult for me to read because I know how awful it is. I have nothing to offer other than to tell you that if one thing doesn't work keep after the doctors to try something else, read eerything you can get your hands on and keep trying different doctors until you find one that will work with you. The one thing that I haven't seen suggested is to apply ice packs, which seem to help my shadows. I was told that headaches were a guilt free way to get a baby sitter, and that was a doctor! I hope that very soon there is a "cure" for this condition so that you may all feel better. Also, this is one of the best web pages I've seen for any interest group, not just cluster headaches.
Lois Wessel <>
Cedarburg, WI USA
Thursday, October 28, 1999 at 11:31:03 (EDT)

What a great site! It does help, as I sit here afraid to go to sleep expecting to wake with another headache, that there is someone else out there that understands! I have suffered with these since I was 19, or at least that is when I remember the first real bout. I was not diagnosed properly untill I was 35! Thank God I found a Doctor who is also a sufferer. I am lucky that I sometimes go years withour a cluster. I have a a few clusters that have lasted for 3 months with 6-10 attacks a day. I own my own business and travel alot and cannot stop working while I wait for the cluster to stop. I know I shouldn't be complaining to you all when you suffer along with me but who can I tell that really understands? I wanted to pass along some recent success I have had in hopes that you all might benefit from it. In the past prednisone has helped break the cluster. I have found that if I take 60 milligrams a day (20 - 3 times a day every 8 hours)it will significantly reduce the attacks and can stop the cycle. I have made the mistake of trying to get off of the pred. too fast in the past and brought back the clusters, harder and more frequent than the first time and thenthe pred. is not effective. My current therapy is to take 60 mills a day for a week after my last headache. Then to go to 50 a day for 3 days, 40 a day for 3 days, 30 a day for 3 days, ...etc. During my last cluster (The one I am currently dosing down on pred. from) I finally tried Oxygen! I have found that it does work if I catch the headache early, but I also found that I cand rebound in an hour or so with a more severe attack. Last week when the cluster was really getting bad (4-6 a day) I was given a new prescription from my Dr. called "Zomig". It is a pill (2.5MG) that is the same basic drug as Imitrix. It works slower and can take 30 mins. to one hour to get the results but it stays in your system for around 6 hours. What worked for me and has helped me to get some sleep, to get over the cluster was to take Oxygen really early (First symptoms) in an attack to stop the heasache (I take Oxygen for about 8 mins. at a setting of 8), I also take a 5mg (2Pills) dose of Zomig at the same time. this gives me relief from the headache for at least an hour from the Oxygen and gives the Zomig a chance to get going in my system. I was then able to get to sleep and stay asleep for 6 hours or so. this really helped me get some rest, since I usually get 3-4 attackes a night every 2 hours of so, and I am convinced that this has been a big factor in my cluster now on it's way our after only 2 weeks instead of my normal 1 to 2 months. I hope this was not too long winded and that it might help you all! Please email me if you have any questions or if you just want to talk.
John Greenwald <>
Denver, CO USA
Thursday, October 28, 1999 at 01:05:58 (EDT)

Hello to all. I have been a CH sufferer for 27+ years. My first doctor had no idea what my problem was and neither did I. I could not even ask him for a second opinion because I didn't even have the first one yet. Every time I had a CH bout, I would call to make an appointment and of course, by the time I got there, there was nothing to check. Until one day, I started feeling the little pain or rather discomfort around the back of my right ear, neck and then on the right temple. At tis time, I called him and told him I was getting an attack. By the time I arrived at his office, both of my eyes were streming with tears, I was in the worst pain I have ever experienced as it was on both sides of my head/face. Lo and behold, it was the first time the opportunity arose that they could actually witness an attack. The X-rays only revealed "a cloud" in the areas of my sinuses. He said he had a patient who had them and to give him a few minutes to locate the file to see what he had prescribed. When he came back to the examining room, his first comment was "He died. Oh, I'm sorry. He died from a heart attack". I will not bore you with any further details. However, I do want to share with you, my fellow sufferers and the rest of the world, because no one should have to endure this much "pain" nor be able to at least assuage the "pain". Bear with me a second and think about what your experiences have been while you read my theory on CH. My opinion of what is going on within our body when the "pain" hits is that it is caused by ACID which entered the sinus cavities. When I have an attack, my mouth gets "flooded" with "a very caustic thick colorless fluid" that will actually burn the skin around my nose and mouth. Think what it will do to the inside of the sinus cavities. This, my friends, is not a head ache. This is what is called an acid burn. I am not a doctor and in no way will I ever try to pass. However, I really have no idea the source of the acid, but if enough of you fellow sufferers agree with me, we can then focus on a cure based on this information. I have had reflux and this is not what I am refering to, it is completely different. I have had these attacks so long that I now break them up in steps. I had an attack last week that was the shortest yet. As soon as I started feeling the first steeep of the attack, I sprayed "4 Way" spray in both nostrils and as I felt my passages open up, I tried to cleaar out my sinuses and nasal passages of the mucus fluid. It burned my nasal passages and and the area above the back of the palate. The great thing about this is that the pain was gone in less than six minutes. Halleluya, Brothers and Sisters. I also ead with interest the part about the perforated intestine causing reaction with the histamines of the body. Say what? It causes CHs? It may be the best explanation yet. The acid would ossmose to the nasal cavities, etc. etc. Can you see it? I think I can. More to come. Just ask. Thank you.
Lou Ramos <>
Anaheim, Ca USA
Wednesday, October 27, 1999 at 23:16:40 (EDT)

i am very happy to have found your site, my father has been suffering from clusters fo rabout 8 years now, and i never understood them but now thanks to your site I am understanding this "disease" betternow. Thank you for creating such a wonderful informative site.
Bryon Robinson <>
Akron, oh USA
Wednesday, October 27, 1999 at 18:26:08 (EDT)

I wish I had known of this site a year and a half ago. I have suffered CH's for about 7 years and they were not diagnosed for the first 3. I do not have them constantly, but they appear out of the blue every year to year and a half. My last experience almost cost me my job. I was having 4 to 5 CH's a day, primarily in the evening and at night. With the dibiltating effects and the medications I was taking there were many days in which I was afraid to drive to work and if I did I was almost dysfunctional. I was literally exhausted and abit whacky. My neurologist would not give my "headache", even though he diagnosed them as CH's an impairment rating for medical purposes. The dingbats at work could not understand my affliction and therefore threatened me with a suspension and a written reprimand. I could only place myself in harms way by driving to work impaired and, on many occasions, in great pain. Although these gonad heads still do not understand the severity of what so many of us go through, I now know that I have people that share a common bond. It's one hell of a way to meet people, but at least thrre are open minds and better minds that what I have had to deal with. Thanks for being here!
Jack <>
Tallahassee, fl USA
Wednesday, October 27, 1999 at 15:57:30 (EDT)

I've suffered from Ch for 20 years (now 34)and up to four years ago was diagnosed with migrain (I wish!) Found a superb GP, very interested and sympathetic. Lets me have all the oxygen I want, also prescribles Naramig (sumitriptan) and sleeping tablets when I'm "going through the mill" Had every treatment for migraine and clusters, including lithium, valium, amytriptilene, adalat, etc, etc, to no avail. Pinning all my hops on Dr Goadsby in London who is researching these monsters.
Linda Garratt <>
Birmingham, Great Britain
Wednesday, October 27, 1999 at 13:32:46 (EDT)

I am not sure, but I think I have started to have cluster headaches. It started 3 years ago when I woke up at 3 am with the worst pain I have ever felt. I thought it may be a cavity in a tooth and saw my dentist the next day to find out my teeth were fine. She suggested TMJ perhaps or a sinus infection. After a series of antibiotics, I thought the problem was over. The headaches have come back intermittenly around 6 mos,. apart April and October being the usual months for the affliction. The pain is unbeleivable, I scream and cry when I am in the middle of an attack, does this sound familiar and what will help? please send advice if you can.
carol levalley <>
novato, ca USA
Wednesday, October 27, 1999 at 02:00:29 (EDT)

the hadeace is very severe, Caffergot didn't help me.
Achara Vathanasanti <>
Bangkok, Thailand
Tuesday, October 26, 1999 at 23:59:19 (EDT)

i've been a cluster headache sufferer since my teens. did not know they were anything other than "regular" headaches till a co-worker told me about his experiences with them. i went to my doctor and described my symptoms to him, he said i just gave a perfect description of a cluster headache (i was 37 at the time). he was very understanding, his father has also suffered for years with this malady. i'm now 45 and the last 4 years i've had the "wonderful" experience of chronic clusters. rarely do i go more than 2-3 days without some form of a cluster. the only "good"? thing is that they are not usually as sever as they used to be. They do wake me up in the middle of the night. more than once i've had the thought of suicide just to get relieve from the pain. my doctor has been very good about helping me get as pain free as possible. after trying countless drugs and combinations of them, we found a combination that helps me most of the time. amytriptolene (spell ?) every night in a small dose, and vicodin 5/500 any time i start to feel like one is coming on. at work most people did not really understand the severity of pain even though two of us get them. it was bringing in articles from magazines, doctors publications and a report, a friend gave me, from Johns Hopkins hospital that others began to realize we weren't just making it up! well that's my story in brief.
barry a. duncan <>
santa rosa, ca USA
Tuesday, October 26, 1999 at 20:23:31 (EDT)

Thanks for the sight,Long time clustedhead(what a name).I am currently living on imitrex,,now experiencing rebound H/A.Man,this seens like it will never end. Just comeing and reading from other suffers has given me some hope. No advise,,,not a damn thing i do seem to work on a consistent basis,,just dont let the basterd win!!!!! Tom
Tom <eddgy99@yahoo,com>
mexico beach, Fl USA
Tuesday, October 26, 1999 at 19:54:37 (EDT)

I found your site in today's "access" insert to the Tampa Tribune (10-24-99). Yes, I did think I was alone, surely if there were others they would have committed suicide by now. I was surprised to see Lidocaine listed as a remedy. It took me over 20 years to find this wonder of wonders. Even now as I spread the word to every doctor I meet, hoping they in turn will tell others and save just one miserable soul, my endorsement is met with disbelief. "That doesn't make sense" is the most frequent comment I hear. I am now experiencing my longest reprieve. It has been 3 years!!!!!!!!!!!!!! (Yes, I took a minute to knock on wood after typing that.) It seems possible we may outgrow the affliction (I am now age 59). Should my glee at this juncture be interrupted I will be sure to let you know.
Carl Regenhardt <>
Lutz (N. Tampa), FL USA
Monday, October 25, 1999 at 16:43:38 (EDT)

I have had these pains for a while but was not sure what they were. I figured I had an eye problem or some kind of blood pressure issue that caused my pains. My symptoms are as follows: Every 6 to 7 months I get a 3-4 day spell of the headaches. They hit me each night at about the same time, typically 2am, and last a good 90mins. The first night they catch me by surprise, but each following night I take tylenol before going to bed. That helps for me. That first night though, I find myself rocking back and forth on my side in bed in a fetal position writhing in pain. The best way to describe it is a screwdriver going through my eye and applying pressure makes it feel worse rather than better with normal everyday headaches. I'm glad I have an idea of what my problem is.
Alberto Aguirre <>
Houston, TX USA
Monday, October 25, 1999 at 13:45:18 (EDT)

Hi, since I posted on oct. 16, Ive meet some very nice people who also have C.H.'s. I now know I'm not alone anyway. For myself, I had them for 27 yrs, trying every med., don't know how many doctors, or how many tests I've had. This site helps because (for me anyway), there is no cure, no magic pill, and no way of predicting when they will start or stop, or how intense they will be. the only thing I can do is deal with them in my own little way, until they are gone again. This site helps because Imeet people who also are trying to deal with them.
Brian Duffey <>
Bybee , tn USA
Monday, October 25, 1999 at 13:00:25 (EDT)

Am currently suffering from cluster headaches.
Cindy Arnold <>
Brampton, ON USA
Monday, October 25, 1999 at 12:04:32 (EDT)

I have never taken lithium for my cluster headaches, but did want to pass along the following info. If side effects are a concern (I've seen many entries) ask your doctor about trying Lithobid which is the same medication in time released form. It almost completely gets rid of those nasty side effects! I'm surprised at how many doctors don't tell their patients about this. Hope it helps someone!
Karyn Gramando <>
Hampton, VA USA
Monday, October 25, 1999 at 10:12:36 (EDT)

I'm 51, and have had these "night visitors" since about 20 or so. My neuro says they quit and/or diminish after my age. O, sure!! Usual meds did very little, demons controlled the time, length, and severity. The usual " God, why me?" sounds so familiar. Luckily, my wife is a nurse, and can somewhat understand the extreme pain. Excellent site, makes me feel a little better.
Stuart A Aakre <>
Chandler, Az USA
Monday, October 25, 1999 at 01:01:51 (EDT)

Hi everyone, My name is Paul. I've had cluster headaches for 8 years. Over the years they have increased not only in severity but frequency as well. I've been to many doctors and have tried every pill available without much relief. I'd love to hear from all of you, what works for you, what you've tried, and what failed. Thanks for listening.
Paul <>
Racine, WI USA
Sunday, October 24, 1999 at 15:30:52 (EDT)

I have suffered from CH for about 11 years. I have been prescribed most of the common medicines with varying results. About 2 years ago, my Neurologist prescibed "Neurontin" which is an anti-seizure medicine. I went about 12 months without an episode and as an experiment was weaned off the drug. Within a few days, the CH's returned. I immediately started taking large doses to build up my blood level of Neurontin (Under the Dr.s care). The headaches stopped within a week. I have been CH free again since July '99. I hope this info will help some of you CH sufferers. This site will be a god-send to me if the CH's return.
Bob Michele <>
Gold Canyon, AZ USA
Sunday, October 24, 1999 at 15:20:13 (EDT)

please supply any info as i am suffering from cluster headaches for over 30 years.since i also suffer from migraine is the treatment the same? i am taking vicoproben and fiorocet but cannot tolerate new migraine meds. thank you.
Richard D'Alessandro <>
ny, ny USA
Sunday, October 24, 1999 at 13:41:26 (EDT)

I am a former clh, I say that because when you get older they have a tendency to diminish in their intensity and occurence. Over the years I went through all the classic episodes and in those days they really didn,t know much about them, In fact they had another name for them (hansen,s headaches) I also had a reaction from a drug called sansert that created a chemically induced stroke and was hospitalized for that. After that I was scared to take other medications until vallium came along. that helped but it wasn't the answer either. what did help me I stumbled on accidentally. Out of desparation and not knowing what to do short of banging my head against a wall, I started doing pushups and they seemed to help me in a way. I then started doing them everytime I sensed a ch coming on. I then discovered what really worked for me, I would do my pushups by trying to lift myself slowly and purposely start shaking, This would start inducing hyperventilation and that was the total secret!!! When I started hyperventilating It would in a sense short circuit the headache. I would lay there exhausted for a while but grateful for the relief. I know this relates to the use of oxegen and if that works, fine but if not this method might be worth a try. Another side of this is you will get some good exercise along the way. Good luck and best wishes dick
dick <>
w allis , wi USA
Sunday, October 24, 1999 at 13:04:41 (EDT)

I have been Suffering from Cluster Headaches for about one year. Medications taken have included Prednisone, Lithium, Verapamil, and Depakote(Current). Headaches usually returned within 7 to 10 days following discontinuance of Prednisone, within 1 to 4 days after discontinuance of Lithium and Verapamil. Iam still taking Depakote. The side effects of lithium(extreme weakness and joint pain) and Verapamil (severe Constipation) were intolerable. While the Depakote side effects are similar to Lithium, they are not as severe, and no Cluster headaches have occurred while on this medication.
Pat Fincher <>
Aliquippa, PA USA
Sunday, October 24, 1999 at 12:22:07 (EDT)

I have been a suffering from CH's for over 25 years. I am a single parent (Lauren will be 3 in December)and work in a fairly stressful environment. My Dr. has recently taken me off of the Imitrex injections due to overuse. I have been using 2 shots a day (sometimes more) for almost 60 days now. Through this site, I hope to obtain some insight into how I can rid myself of CH's, or at least learn to manage them so I regain control of my life! My sincere thanks to developers of this site, and to all that take the time to participate.
Gary <>
Oak Creek, WI USA
Sunday, October 24, 1999 at 09:52:34 (EDT)

Great Site!! Have suffered for the past twenty years - your site very helpfull. Current cluster about three months old. I hope it's getting towards the end.
Steve Sims <>
Gravesend, Kent England
Saturday, October 23, 1999 at 20:42:36 (EDT)

Thank you; I was beginning to think I was going mad-- I have progressed through the entire "kip scale" (I love it!) in my history of ch's. I am 27, and have had episodes since I was 19. Just so very glad and relieved to know that I am not alone with this. Peace, Jennifer
Jennifer Arcuni <>
Redding, CT USA
Saturday, October 23, 1999 at 20:19:43 (EDT)

Hello to all at from stop by some time Regards Matt Carroll
Matt Carroll <>
Sydney, Austalia
Friday, October 22, 1999 at 22:29:46 (EDT)

I'm glad I found this site. I've suffered from CH for about 25 years. Does anyone have any idea what triggers these things? My only known trigger is alcohol but Id be interested in finding out if there are other triggers.
Lew Gauper <>
Vero Beach, FL USA
Friday, October 22, 1999 at 11:51:05 (EDT)

I'm 29 years and i have chronic cluster for 4 years. I think this site is a great idea, and it realy helps to read how others live with this awfull disease.
Matthijs Bosma <>
leeuwarden, fr Holland
Friday, October 22, 1999 at 07:54:31 (EDT)

Hello fellow sufferers. I will keep this brief despite the fact that i could 'crap-on' for ages. I am 30 years old and have suffered episodic cluster headaches for the last 14 years. My bouts come every 18 months to 2 years and last for 6-8 weeks mostly in winter months. In this time, i will suffer about 12 headaches of which 4 or 5 will be exteremly severe. Pacing, pushing on the point of pain (left-sided sub-ocular), avoiding light, noise and having a ton of tissues for eye, nasal and oral discharges are all 'de rigeur'. Unfortunately, my next bout is iminent and i am on 'yellow alert' with Verapamil at the ready for 'prophylactic popping'. This drug seems to lessen the severity of each 2-3 hour headache and i was prescribed it a couple of years ago. However, i still have my doubts about verapamil as the last bout may have been coincidentally less severe. I have tried oxygen therapy, prednisone, indomethacin,lithium and heaps of analgesics with no effect over the years. My mother suffers from clusters as to does my uncle on my fathers side. Recent research here in the UK has isolated changes/size in the grey matter of the hypothalamus as being a possible cause of these 'brain frazzlers'. I have a bit more info on this if you are interested and would be happy to correspond with any fellow CH'ers or, usually helpless friends or family of sufferers. It's nice to be able to share info on this disorder. Best wishes and kind regards -Aidan Futter
Aidan Futter <>
London, UK
Friday, October 22, 1999 at 07:44:31 (EDT)

I've noticed that 90% of the messages in this guestbook lately mention something about headaches lasting 24+ hours. As a cluster headache sufferer, I am VERY concerned that you haven't found the right site! I just want to tell you that if your headache lasts for more than FOUR HOURS (no matter what the level of pain), chances are you DO NOT SUFFER FROM CLUSTER HEADACHES!!!! Follow the links to some of the pages on the menu located on the left hand side of the page. Specifically the "cluster traits" and "cluster quiz" pages! If you don't fit the "profile", you may want to check out the "headache links" page to find out where you're pain is coming from. It does you ABSOLUTELY NO GOOD to spend time on this site researching treatments if you are not a true sufferer of clusters. Take the time, do your research, and find a site that will help you in the long run!!! Sorry, just felt this needed to be said!
Concerned <concerned>
Friday, October 22, 1999 at 00:57:07 (EDT)

Howdy, I'm Sandra--Help! Although I love him dearly and without question, my husband is one of those people who has never had a headache in his life and can't understand the debilitating nature of these invading mosters! To make matters worse, he is a therapist and believes this is "all in my head." Ha ha ha. I am lucky enough to get CH's and good old fashioned migraines. Unlike a large number of you out there, I know my CH will be gone in 3 days--and come back later in the month for an unwanted encore. Exercising regularly helps keep the duration of the CH to a minimum. But nothing keeps it from coming. My pain is so white hot and concentrated around my eye I would like to pop my eye out and plunge it into ice water. Instead of 10-15 minute intervals of pain, my CH is a constant 3 day pain. I do have varying degrees of pain for the duration and bits of time when I can function. Meanwhile, I try to live my life around the invasion and lack of home support. Thanks for listening!
S.A. Barletta <>
Thursday, October 21, 1999 at 22:22:44 (EDT)

Help! Although I love him dearly and without question, my husband is one of those people who has never had a headache in his life and can't understand the debilitating nature of these invading mosters! To make matters worse, he is a therapist and believes this is "all in my head."
S.A. Barletta <>
Thursday, October 21, 1999 at 22:04:24 (EDT)

Hi Gang every 18 -24 months for the last 20 years I have gotten these mysterious headaches. I'd like some input if it sounds like your C.H. It starts behind my right jaw and shoots like lightening through and to the top of my head. I liken the pain to being struck with a hammer, it can bring this 200# 6'1" tough 39 year old man to his knees. The pain starts very mildly the first day then the next couple of day it's intense. The strikes may be started by stimuli(light sound cold etc.) they only last a couple of days then fade out on the last day. Your opinions Please? I too am glad to find this site I thought I was going crazy. the dr. thinks it's c.h. and has given me ercaf I cant tell if it works or if the strikes are just diminishing.
Greg David <>
Lake Havasu City, az USA
Thursday, October 21, 1999 at 12:06:49 (EDT)

Hi. My name is Samantha (please call me sam) I am a massage therapist. I am working with a patient (who has now become a great friend) who suffers with clusters regularly. I know at time he feels alone and I am excited to tell him about this location. I would dearly love to hear from anyone who can offer me some advise in treating clusters or even how to help Damian feel better. Damian and I are exploring alot of natural therapies and can post our findings if anyone is interested. There is no stone we are not prepared to look under. I hope that someone will read this and send Damian and I some advise or even some words of encouragement for him so he knows he is not so alone with this problem. Thanx.
samantha <>
melbourne, vvi australia
Thursday, October 21, 1999 at 04:34:05 (EDT)

Hello all, I've been an episodic sufferer for about 19 years now. Had them for about seven or eight years prior to being diagnosed. My clusters generally come once per year in the summer or fall, and usually last from four to ten weeks. I have experienced many level 10's, some lasting as long as four or five or more hours. Sometimes it has been one headeach for two or three days, just varying in level of intensity. I believe that I have experienced it all with these things (I sure hope so anyway), and as I read everyone's posts, many of these stories sound way too familiar. I've enjoyed checking the site and reading the posts each time I have a cycle, it is good to know that there are people out there that can relate to this thing, but I do feel sorry for each and every one of you. Prior to now, I never felt a great need to share my story, but with the success of my latest treatment, I feel obligated to if I can help even one C.H. sufferer. A few years ago, I found a very open minded neurologist that has been willing to experiment with many different treatments, even going so far as to listen to my suggestions based on my own research. After being very successful the first time, prednisone failed to work on subsequent cycles, the same with verapamil, depakote, oxygen and numerous others, as nothing seems to work twice in a row. Until now, pain killers were my primary means of defense against "the beast". After reading somewhere about the benefits of lithium for C.H.'s prior to my last bout, just a little over a year ago, I suggested the treatment to my neurologist. He prescribed 300mg three times per day. The headaches disappeared in less than a week, although I continued to take the medicine for about a month to make sure I kept the monster away. A week ago I woke up with a dreaded C.H., something that isn't supposed to happen this time of year. I was angry, but went to the medicine cabinet searching for what was left of my lithium from the last time. I started the treatment, then called my neuro. to replentish subscription, which he promptly did. I had two headaches the first day, a very weak one the second, and have not had a real headache since. (Cross my fingers) The lithium makes me feel kind of lousy and tired, but I can function in a very high stress job, and most of all, I seem to be dealing with a cycle pretty much pain free. Lithium is the first treatment that has really worked two cycles in a row. Pure oxygen comes in second for me, but on the last cycle, as soon as I took away the oxygen the headache was back. Right now I'm a huge lithium fan. I just hope it is a permanent buffer against this thing. Sorry I took up so much space. Good luck to everyone who suffers from these things and hang in there. Hopefully you will all find your own "cure".
Brice Gundlach <>
Vale, OR USA
Thursday, October 21, 1999 at 00:06:47 (EDT)

Hi there, well a little word from me about this matter. I've had this terrible,horrable pain behind my right eye since 4 weeks now and i must say: I'm not scared but it sure hurts as @%*! I went to the doc. and he said that it was Horton or also called Cluster Headache and there is not much that could help! Well i have painkillers now but i want to cure from this pain, because i hate medicine. My believe is that if you can take away the source, i don't have to take al those painkillers (which make me sleepy to) WHO knows a good medicine to that takes away the attacks SO that i don't have to take all those painkillers??? My attacks are mostly every day and sometimes during the night. The attacks never take longer then 45-60 minutes, and i've no sweating,no red face, just terrible pain behind my eyeball that leads to my ear. Also a bit sleeping feeling at the right side of the head. Well i wanna wish you all the succes and i hope that many of you may recover of this! Bye Regt <>
Amersfoort, Holland
Tuesday, October 19, 1999 at 12:54:11 (EDT)

Hi, I am a CH as well. My life has just about come to a complete hault. I have a ct scan scheduled in 2 days I sure hope it will show something or tell them what is causing these headaches. In the past 3 weeks I have had a headache approx. everyday with the exception of 2 days. Sometimes the last for several days and all I can do is lay on the couch and suffer. It just gets so tiring. It seems like all my energy just goes to fight these migraines. I am just about at my wits end. Dawn
Dawn Burroughs <>
Houston, TX USA
Monday, October 18, 1999 at 23:16:03 (EDT)

Can't remember if we've ever signed the Guest Book. My husband is the sufferer in our family and has been in remission for the last 12 months and 18 days (not that we're counting). It's because of this website that we've found relief and I just wanted to thank DJ for the awesome job he's done assembling this family of supporters. (Plus I wanted to practice my HTML stuff. Sorry - at least I didn't do this on the message board. Shoot me later. Anyways, any supporters out there who need a shoulder, I'm more than willing to help. Email me anytime. WWW Margi
Margi <>
Calgary, AB Canada
Monday, October 18, 1999 at 22:04:26 (EDT)

I have had devastating chronic CH's over ten years on a nightly basis. Nothing helps! Husband very sypathetic, but understandably frustrated. Social life kaput. Afraid when sun goes down, because I know they're coming. Sleep sucks. Weekends the worst. Seems only relief is during the day at work, which really sucks! 20 doctors and various practioners no help. Reaching the end of my rope!
Shary MacDowell <>
San Jose, CA USA
Monday, October 18, 1999 at 16:49:17 (EDT)

My son Jim, age 16, is autistic, severely retarded, non-verbal and has very limited communication. He cannot tell us what he is thinking in any way. Starting July 4 he has had about 25 episodes where he craves bright light, paces intensely, then screams out in pain, bats his head near the eyebrow region with his fists or into a wall, turns red or purple in the face, has tears streaming down his face and is just out of control with pain. He grabs anyone who comes near and slams his forehead into your forehead as hard as he can, and grabs your shirt and will not let go. This is different than any behavior he has ever had. He has had a CT scan and MRI which were negative. He is also epileptic and gets grand mal seizures. The neurologists and psychiatrists do not know if this is frontal lobe seizure activity or cluster headache with seizures happening separately. He gets some relief many times with Imitrex and Percoset taken together, if they are given before the all out blowout takes place--if you can catch it in the intense pacing and first few cries of pain stage. The physicians have him on daily dosages of Depakote and Neurontin. Do all of you knowledgeable people out there have an opinion on whether he has cluster headaches, and if so, what should the treatment be? Please don't ask me to ask him anything--he literally cannot communicate. Thank you.
Bill DeBauche <>
Kansas City, MO USA
Monday, October 18, 1999 at 13:36:03 (EDT)

Hi, I"m in the process of applying for social security. My appeals hearing is in the middle of nov. Has anyone been successful in getting social security for cronic cluster headaces. Any comments or help would be appiciated. thank you.
Brian Duffey <>
Bybee, TN USA
Saturday, October 16, 1999 at 16:01:08 (EDT)

I've met only two other sufferers since I started having clusters back in '88. One was on disability (mental condition) and the other was crippled due to steroid nerve damage. So far I'm still whole, unless I tear my eye out of my socket tonight! My friends don't understand why I can't be "cured" or why all the medications I'm taking do no good. I don't sleep anymore....I'm scared to....I've tried ev'rything this side of decapitation. I'm really, REALLY glad to have found this place.
Michael Whitlow <>
Austin, TX USA
Friday, October 15, 1999 at 13:34:03 (EDT)

Cluster sufferer for 15 years. Clusters occur approx every 20-24 months, stay around for 2-3 months and get worse as cluster drags on. Cluster started up 5/10/99 joy. Sumatripan only comfort although I am going to ask Doctor to let me try other stuff like Ritalin that I have only just found out about
Laurie <>
Torquay, Dev England
Friday, October 15, 1999 at 07:32:33 (EDT)

I have been getting CH's for 18 years.I used to get them 3 month's out of the year and now i have them everyday.Iget up to 4 per day and i'm finding it very difficult to keep my job.If you have never had these people just do not understand.I have taken so many different meds. Depakote,tegratol,imitrex,zomig,oxygen,inderal,paxil,limbitrol,prednisone, midrin,oh just to many to mention.I have a dr.that understands but at the same time has given up as to what to do for me.The older i get the worse the pain is and i see no end to it in sight.I also bang my head on things and rock back and forth and cry my eyes out.I get sick alot with every headache and the pain in my right eye and ear is unbelievable.Any help for me would be a blessing and to be able to quit my job before i'm fired.I think ssi sounds good to me right about now.
Susan B <>
Kankakee, Il USA
Thursday, October 14, 1999 at 13:36:26 (EDT)

I have been suffering from cluster headaches for years. My Dr. in another town gave me diflucan and that was the first time I had been headache free in years. Unfortunatly I had to move and the Dr. I'm seeing now will not prescribe diflucan for me. Can anyone tell me if there is a Dr on the web where I can go and get them over the net. I am willing to drive to Mexico or Canada to get them as that is the only thing that ever gave me releif. please help as I am hurting bad average 5 days a week.
Barbara S. Johnson <>
Richmond, Ky USA
Wednesday, October 13, 1999 at 19:57:42 (EDT)

very imformative web site. i can't say i suffer as much as most. my episodes with this demon come less than once per year,[last night 10/13/99 the most recent]. my symtoms are as follows:1. tunnel vision for a half hour or so 2. light headed 3. nausia 4. mamoth headache in back of head and on temples 5. one time i had slurred speech and confusion. thanks for the oportunity to feedback! sincerely, david ladd
Wednesday, October 13, 1999 at 19:12:38 (EDT)

It's good to see a site like this. Cluster's are so life consuming when they show up that it's good to have as much info as possible.It's also good to know that i'm not alone in this, although I would't wish this pain on anyone.
Brian Holter <>
Golden, Co USA
Tuesday, October 12, 1999 at 06:32:09 (EDT)

I have had the curse for 17 years. I have a doctorate in clinical pharmacy and specialize in the treatment of pain. I am grateful to see a website devoted to cluster "headaches" and will enjoy possibly helping anyone on the site as well as learning a great deal more about the syndrome.
David L. Haller, Pharm.D. <>
San Diego, CA USA
Tuesday, October 12, 1999 at 03:07:33 (EDT)

About two weeks ago I began to have my first episode of cluster headaches. The pain would begin behind my left eye and spread to include most of my forehead. Previous to this, I had no headache that a Tylenol or two couldn't handle. But this was different, and I made an appointment with my doctor. She diagnosed me as having cluster headaches, and prescribed Cafergot as a treatment. The headaches would resume in the early afternoon, and I took the Cafergot, which helped out a lot, althought this treatment is quite a strain on my system. It is now almost a week later, and my headaches seem to be waning, because today only two Tylenol were necessary to bring relief. This website has been and continues to be a valuable resource to me. I must admit I have worries concerning the tendency for this affliction to become chronic, since I am experiencing my first bout at age 49. I would dispute the effectiveness of Depakote as a preventative for cluster headaches, because in my case I have been on this drug for over two years for an unrelated condition. I realize I am not alone after spending time at this incredible website.
Bill G. <>
Janesville, WI USA
Tuesday, October 12, 1999 at 02:38:15 (EDT)

Hi- this is my first time here. so please pardon if this post isn't exactly right. 18 yrs ago I was diagnosed with "headaches". back then cluster was a word not used much. When my headaches turned chronic the nureo told me I was schitzofrenic chewed me out for a good 25 minutes for "not being strong enough". The next 16 yrs were a living hell by the time i was done i had seen 120 diffrent nureos. pshcos, and every other sort of md in between. had every test known done to me (and believe me some weren't real pretty)spent 200,000 dollars of my own money on travel uncovered ins expenses, and many many "witch doctor treatments" that looking back onthem ican't believe iwas so stuip as to let someone do those things to me (the worst was histamine desenthisization but thats a whole other story). about ten years ago i finally got mad as hell and became a nureo's worst nightmare. An Informed Pateint. i spent hours and hours at librarys both public and university reading every scrap of information and related articles i could get. i questioned every move, i refused some tratments they wanted to do i.e. severing of facial nerves, radiation, and many more. and these were things the supposed top medical centers in the country wanted to do; try to imagine the whitch doctor treatments. finally 18 months ago i ran across an article from poland on using stimulant's and verapimil on intractable headaches. i took it to my doc and he laughed at me refusing to even consider it. after 5 more trys of asking begging then demanding i gave up on him. and searched for someone on my own thru a bizzare set of circumstances i finally found a doctor willing to try it. today i still have pain,3or 4 cycles a day but i am able to work full time +,freinds and family say that the person they new is coming back. only by gods grace and an icredible woman and two of the greatest kids anywhere did i survive this. most people including myself towards the end doubted i'd live very much longer i weighed 110 pds and was starting to show signs of internal damage from years of massive doses of every drug and combintion imaginable. I don't write this to brag or even tought what finally has worked for me. I write this to tell you TO NEVER NEVER GIVE UP. You are not weak or stupid or insane or bad person. when doctors say they have tried everything take matters into your own hands and find it youself. i have over 40 gigs of articles and studys and websites on 4 hard drives in my office. over the years i have made contacts on every continent. if i can help anyone find information i will give you any thing i have. the only thing i ask for inreturn is YOU NEVER GIVE UP. In fiveteen years i have had 7 friends of mine that imet thru reasearch projects pain clinics etc with intacable pain give up. last week #8 took his own life, if anyone out here is thinking that way please please please e-mail. last week i missed the warning signs, i convinced myself he was all right. an hour ago i talked to his wife and 10yr old son and 6yr old daughter by phone. in my buisness I must deal with emotionally draining circustances from time to time. nothing could have prepared me for the conversation with my freinds family. his 6yr old told me not to cry. that her daddy didn't have to ever to hurt again. but her final comment was "but now i"ll never have my daddy back ever" after crying for 30 minites and the whole time writing this. i finally realize we have to stay together, our family frinds doctors in spite of all their good intentions can never begin to comprehend what this demon is like. every cluster patient i have ever met greatest frustration is not beeing able to put into words what it is like. i quit 5 yrs ago after realizing there are no words in any language to use. But here we don't have to verbalize it, we all know what it is all to well. I have never posted on aweb site before. I was afraid of hearing all the stories over again that are burned in my soul from experience. i was wrong. very very wrong only together can we get information out, with our combined voices and experiances we can make the system listen. if they don't we will beat on their door till they do. this is a new experience for me but any info old, new, no matter how insignificant it might seem. will pull up for anyone and get it to you. any info you have i will gladly add. just ask terrys death certificate will list depression as the cause of death. you and i know better I WILL NOT lose one more freind to this thanks for letting me post jeff b p.s. please excuse my typing after all those years in college i still depend on a spell checker.
Jeff B <>
Monday, October 11, 1999 at 17:45:45 (EDT)

I will admit first in true earnest that i have cried already after seeing someone else say "the beast" in reference to this condition. I have endured this hellish pain for 8 years now and I could not in a hundred remembrences tell you all it has taken from me. I am now as of 15 minutes ago aware that I am not alone and am not privey all alone to this anguish and suffering. I'll stop for now with this no matter what happens to you who share this Demon you will make it after 8 years with this I know no not of any thing in the world that can break my will. a.gain
Adam Gain <>
Parkersburg , Wv USA
Monday, October 11, 1999 at 15:00:18 (EDT)

What a great Web Page. Long time Cluster Victim about 19 years. I though I had it whipped, like I read with so many others after a two year absents it came back with a vengeance After living a normal LIFE for the past two years, it even makes it worse to have the beast back! This time they are coming mostly at night all night every night. I can almost set my clock by them, 1 hour after I fall asleep I sit straight up in bed with one, strange thing is I always have a remembrance of some dream and when I'm not in my cluster I never remember a dream. The first one is usually mild a quick walk or some 100% oxygen will kill it in about 15 minutes. Then back to sleep and 1 hour later it starts all over again same sh&*t. About the fourth one is a real headbanger, right sided, eye runs, nose runs, feels like the beast is try to eat it's way out of your temple. I know this probably sounds all too familiar to anyone who suffers this terrible affection. Like a lot of you I got to bed every night and hope and pray this is the one night I sleep all night. It has been three weeks in a row and the beast has come every night so far so, maybe tonight I will be lucky! I will keep checking back to see what's new and MANY THANKS for being there, reading about other cluster victims somehow makes it better. Not alone anymore.
Mike <>
Clarion, IA USA
Sunday, October 10, 1999 at 22:11:00 (EDT)

Im still not one-hundred % convinced that I have clusters, reason being is that my pain has gone on for 2 years now, and when it comes it stays, not for 10-mins or a number of hours, the longest episode 21 days I missed from work, the other symptom I have, that I dont see with others is that my left eye swells, and at times swollen shut, the left nostril is stuffy and the pain in my cheek and mouth has lead to 4 Root canals, and 3 apeco surgerys and in my last desperate attempt, 2 extractions; and guess what, if I didnt know better, I would swear those teeth were still there. I also have had several drs. tell me that I dont have cluster headaches, and several tell me that I do. I dont even want to go into all the test/drs I have been thru, so now after looking at your site, Im trying an increase in magnesuim, calcium, and feverfew. I really am glad of this site though, the pain is all too familar.
Richmond, Va USA
Sunday, October 10, 1999 at 14:29:35 (EDT)

I have been sitting at my computer for the past 2 hours reading and re-reading the information and entries found here. I am searching for information for my brother. Terry has had CH's for several years, I really don't know how many, but it seems forever. Two years ago I was at his home to visit and I saw him have an attack, I will never forget seeing him in pain that way. He scared me so badly, I thought he was having a seizure and afterward his face looked like he had suffered a stroke (that appearance lasted nearly an hour). I know that at one time his episodes were "seasonal" but for the past few years they seem to never go away. I know that he has tried many various medications and combinations of med's over the past years, several of them would appear to work at first, but never for very long. He is currently taking 500 mg. Depakote 4 times a day, Prednisone, Propanolol, some form of anti-depressant and the all time favorite Imitrex. His dr. has also started him on something new called Amerge. I did not see any comments on "Amerge" is anyone else trying this? Are you getting any relief? He is beginning to have chest pains after taking Imitrex, but refuses to tell his dr., he truly believes he cannot live without the Imitrex. He has been taking Imitrex for a few years now, and learned a trick others of you probably did too. He was using the injectable medication and figured out how to use only 1/2 of it each time..that way he could make it last through more episodes. The last thing I want to say is that I have a great respect for the spouses of CH sufferers. My sister-in-law is a wonderful person and I love her dearly. I can only imagine how awful it is for her to watch my brother suffer and not be able to help him. I know that she has lost as much sleep as he has in the past years. Good luck to you all, and God bless. Brenda
Brenda Cates <>
Quitman, Tx USA
Sunday, October 10, 1999 at 01:25:21 (EDT)

I found this site this evening having just suffered another attack in what has been only my third week-long bout of CHs. Imagine my joy at reading so much wonderfully rich and helpful information - imagine also my sadness at realising that this is something so many SUFFER with. I cried reading many of the entries - I guess I'm still a little down caused by the pain - although I am lucky to have a partner who is sharing and caring enough to try to understand my pain. Treatment offered by my doctor has been IMIGRAN nasal spray (with 20 mg sumatriptan) - although this may be called something else outside of the UK - made by GlaxoWellcome. So far it helps bring about relief within about 20 minutes - although my doctor is reluctant to prescribe this - could it be the cost? Thanks again for letting me share your experiences and information - this certainly is a site to re-visit and support. I fear returing to bed to sleep incase there is another 'beast' tonight. I would welcome any contact from other CH suffers like myself in the UK. Kind regards.
Anthony Howlett <>
Caterham-on-the-Hill/Surrey, England
Saturday, October 09, 1999 at 19:39:32 (EDT)

Just browsing your site.
Susan Dentzer
Saturday, October 09, 1999 at 16:37:15 (EDT)

After 2 years CH free, the demon announced "I'm BAAACCKK". Two years ago I found the DIAMOND HEADACHE CLINIC ( in Chicago, IL. What a Godsend these people are! They are soooo excellent. I was given 2 injections and 3-4 meds to take that they wean as the cluster is 'broken' up. They also gave me Toradol and DHEA to inject for the headaches (both work great)! I took what little meds I had left and so far I haven't had another (maybe my prayers were answered this time), but if the case may be, I will be heading to Chicago ~ they are experts on Clusters. If you would like more info, please email me.
W. <>
Thursday, October 07, 1999 at 21:49:21 (EDT)

I am 42 year old male suffering from clusterhead aches for about 4 years.Most nights I cannot sleep when i have them and walk the house in pain. Its cost me my job and now I live on social security which is less than we need. I write poetry in my spare time when I feel well. I take three types of pills to control my clusters headaches. Since then I have had heart attacks and no one knows why. is it due to my head aches? I am lucky I have one of the best doctor in the phoenix arizona because he cares and I can always tell he worries not just only about me but my whole family!
phoenix, az USA
Thursday, October 07, 1999 at 15:56:15 (EDT)

After almost 2 years headache free, they are back. I've been getting about 1 a day for the past 3 weeks. I tried to de-caffinate and de-chocolate but it seemed to have no effect. Cold air, cold water seem to help. In the past I've tried Prednisone (no affect), and Flonase nasal spray, which gave me a chronic dull headache. I saw a neurologist as the last cluster was ending, he wanted me on about 4 different steroid meds. NO thanks. Tommarow I'm seeing an acupuncturist!
Mike Hess <>
Minneapolis, MN USA
Thursday, October 07, 1999 at 15:43:00 (EDT)

I have recently come across this wonderful site and have been attempting to organize my thoughts and maintain my composure enough to express how I feel right now. I am 28 years old and have been suffering (many with illnesses use that word, but how appropriate it is for us) through episodes of cluster headaches for a little over 10 years. My first experience with “the beast”, as many of you so aptly call it, occurred shortly after my 18th birthday in June 1989. (Although, my parents told me that as a young child I once had a series of severe headaches over a few days, where all I wanted to do was lay on the bed and thrash around beating my head.) I was “lucky” enough that I was referred to a neurologist who immediately identified my “migraines” as cluster headaches (Unfortunately, I did not go until I had gone through weeks of increasing intensity to KIP 10). I feel so terrible for those of you that had to deal with many years of misdiagnosis and skeptical people. I was given Sansert and the headaches disappeared in a matter of days. Since then it has been a come and go battle full of frustration, with my last episode being a little over a year ago. Even though most of the people in my life have been supportive, (mostly because they can see the beast reflected in my face as it comes and goes, and they are scared into attempting to realize my pain) it is quite a different experience to connect with others afflicted with the same misery that I know too well. For years I have known the statistics, read the research, and explained to others what CH is, but this experience is completely different. I have never been so emotional about my CH (except while in the middle of an episode). I always knew that I wasn’t alone, but I never had any personal contact. Reading all of your comments made me realize the power of empathy, not just the sympathy that I have always gotten, but it has also reminded me of my fear of the beast. After the episodes are gone for awhile, there comes that hope, a false hope, that the beast will not return, but I know that it will...someday...
Mark W. Fosbenner <>
Quakertown, PA USA
Thursday, October 07, 1999 at 14:17:59 (EDT)

I was so pleased to find this site. Several years ago when I first found that I was NOT suffering from sinus infections but cluster headaches there were only a handful of sites that even mentioned Clusters. Well what can I say? I have been a sufferer since 1994 (I was 22 years old) Now I have been fully baptised into a live of agony and pain. I have tried most of the classical methods plus some not-so-normal methods. I tried acupuncture last year which seemed to work but this past week when they returned the accupuncture to no help. Now they gave me Imitrex: I hope this works..
Matthew Dorr <>
Allentown, PA USA
Wednesday, October 06, 1999 at 11:16:31 (EDT)

my father has severe migranes mixed with the cluster no medicie or treatments have worked. he has just about exaused every option the fnial option he is considering is a brain surgery in which they will cut a mucel in his brain to stop the pain. the side effects are paralisis. we dont want him to choose this we need some help.
tina devos <>
penndel, pa USA
Tuesday, October 05, 1999 at 19:35:44 (EDT)

(thank god) im a 23yr demon slayer, although i think the demon has a few up on me. this site (i found an hour ago) is going to be a big part of my pc life. ive only been on meds for last 9yrs, i know what real pain is unlike idiots that say its only in your mind. oh keep in mind (stay away from norgiesicforte). if i had a gun while i was on that i would said goodbye. real downer....thanks for letting me vent.....jonno
jonny <>
boston, ma USA
Tuesday, October 05, 1999 at 19:20:04 (EDT)

I have had acute cronic cha's for over 22yrs. I have never met or ever talked with anyone who ever has them. My wife and her friends and family believe that it is an emotional thing with me. We are divorcing. The pain is so bad. I've never, ever had anyone to talk to. Not even my wife. I've been so lonely. My sister found this web site for me yesterday I just could not believe it. Thanx.
Peter J Alasko <>
santa fe, NM USA
Tuesday, October 05, 1999 at 14:26:04 (EDT)

I am unfortunatly new to this group (Ouch). My first episode was September 24. It was UNBELIVEABLE,my first thought was that I was having a Stroke! At the onset,I consumed Tylenol. The pain was "Excruciating". I tried to lay down however that was impossible. I paced the house holding my left eye saying "Good God please go away!" This went on for 45 min, then as suddenly as it started it stoped. I had no idea what it was all about having never heard about Cluster Headaches. Later that evening I was going to relax & have a beer, before I finished it the Pain was back. Again I paced around then took a shower hopeing that would bring relief. It again vanished in about 1 hour. The cycle continued for the next week until coworkers called 911 the next week after it happen at work. The hospital found nothing as the Pain had vanished shortly after getting there. Finally last friday I went to a local Med Center where that Doctor recognised the symptoms & Diagnosed Cluster Headaches. They gave me Imitrex Nasal Inhaler. The pain stopped within 5 Min. I have searched the web for all the info that could find on clusters, I now know that ALCOHOL MUST BE AVOIDED as it is a Major Trigger. I pray that these episodes only continue for a few weeks instead of being Chronic. My last episode was 10/5/99 at 2:30 am. Later today I have a follow up Doctors Appointment. I feel sorry for all of those who have an episode anytime in the future. This is NO FUN AT ALL.
Dave Smith <>
Tuesday, October 05, 1999 at 09:24:51 (EDT)

This site is really a Godsend. I'm in the beginnings of a CH cycle right now. It's running later this year. Usually the "BEAST" strikes in late June, early July. I have taken alot of stuff trying to beat the pain but to date, nothing sorks for longer than two or three episodes. I am learning alot from the other people that are suffering from CH. All I can offer is my thanks. Later, lar
larry bowerman <>
mt morris, mi USA
Monday, October 04, 1999 at 23:56:34 (EDT)

What a relief to locate this site...I've taken so much sinus medication + sinus surgery, that it's just amazing - (they did discover a polyp) and I was headache free for 6 months....That was great!!!! Now headaches are back. It's amazing how they masquerade as sinus! Does anyone have 'bad' dreams and then awaken with a headache? Not nightmares, just unpleasant dreams. I don't seem to suffer as some of you do, with a Kip level of 9 or 10...Mine seems to stay around a 3 or 4, but it wears me out.....Did any of you start that way and then as time went on, the level of pain escalated? Please e mail me as for some weird reason i'm not able to access from home...head aches too much too concentrate on looking into it..... hopefully, will get some imitrex today - maybe that will help until i can get to a neurologist.
rchatham <>
San Angelo, TX USA
Monday, October 04, 1999 at 16:12:24 (EDT)

just wanted to add my name to this list. Have had them for over 25 yrs.Most the preventitive medicine has ruined my kidneys,and my headaches have become chronic so as they get worse,I'm left with taking mostly pain pills and even they don't do much.I'm no longer able to have a job or lead a normal life, Hardly a day goes buy when. Idon't get a clusterand it can last for 2 hrs to two days.
Patrick Mooney <>
Cleveland, OH USA
Sunday, October 03, 1999 at 06:37:07 (EDT)

Get CH's every few years; usually they only last a week, but this time it's going for about 3 weeks. The pain is easily controlled with ergotamine ( and lately a small dose of amytriptaline at night ), but a dull headache usually remains. Hope it goes away soon.
Larry Gulmi <>
Hillside, NJ USA
Saturday, October 02, 1999 at 06:37:09 (EDT)

Mine began at age 16 and stopped prior to reaching 50. Nothing ever worked, and it took years for me to get a proper diagnosis, even though I knew during my 20s what I had. A Doctor then told me I couldn't have them as they were singularly a man's headache. The final bouts were treated by me by lowering my body temperature. It is a great relief not to suffer from them any more.
Pamela Nuesseler <>
San Diego, CA USA
Friday, October 01, 1999 at 14:42:13 (EDT)




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