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 July 2001. Thank you for your continued active involvement in this site and keep those guestbook entries coming!



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I thought that I was the only one who suffered from this type of pain. I am glad to know that I am not alone.
JayMarie <>
Vidor, Tx USA
Tuesday, July 31, 2001 at 23:06:06 (EDT)

Hi i am 21 years old and have been having what my doctor thinks are migrains, though i think different i start off with a little dull pain in my one eye ussually my right though it dose change somtimes. the pain becomes intolerable i push my hands as hard as i can against the sides of my head i find the pressure helps me as soon as i take them away the throbbing stabbing pain returns within a minute my arms ache like mad, i nearly always end up crying i sit upside down against the wall take roll around on the floor bang my hhead on the floor i feel somtimes like im going to die. ive been taken to hospital twice i was sent home with co- dydramol which to be honest didnt help on bit i lied on the floor criyng, just wanting to die the kapaks that they give me now help somtimes though ifind i have to double my dose i ussually take about 3 any more and i throw up which doesnt help the situation. my doctor has given me (migrain tablets) still convinced that is whats wrong with me they dont work. i dont seem to have suffered much this year only a couplle of times a month b4 they were every weekend and nearly every day. everyone that i have told or have been with me during one of my (dark periods) says im over reacting and say "i have headaches just get on with it dont be so dramatic it cant be that bad" shows how much they know !!! im really glad to be able to get this off my chest im not alone anymore i will think of you all during my next attack. thanks for listening to me . love from sarah
sarah louise richardson <>
cardiff, united kingdom
Tuesday, July 31, 2001 at 18:03:57 (EDT)

I've been pain free for over three weeks now. I stopped drinking caffiene for a month prior to the end of my CH's. For those of you who haven't tried this really need to try it. Yes the CH's get worse and more often when you stop caffiene but if that is your trigger they will stop in about a month. Good Luck --- J. Winn
J. Winn <>
Lakewood, Co USA
Tuesday, July 31, 2001 at 13:59:14 (EDT)

My name's Gwen, and I'm 55 and have had CH episodes since 1975, when I was about 30. I'm currently in a cycle, after almost 4 years of remission. It's nice to find this website, and I'm posting this in hopes that it may be of help to some. I felt so complacent in my long remission that I sent back all my oxygen equipment, tossed out my Imitrex injector, and flushed all the long-expired Sansert down the toilet. It took six weeks, but the vultures came home to roost and I started this current cycle. I should have known… Personal Battle Plan (Remember -- No battle plan ever survived contact with the enemy!) Oxygen, Ibuprofen, Compression and Imitrex – Oxygen always helps, and usually will terminate the headache if I can to it soon enough. It often leaves a shadow, though, which 600-800 mg ibuprofen helps with. (The ibuprofen won't help the actual headache, of course.) Imitrex injections work nearly all the time, but I try to hold off on them as much as I can. Imitrex also eliminates shadows, and seems to inhibit or delay the onset of the next headache. Compression--My headaches are on the right side, between my eye and right temporal area. Compression across my right eyebrow and sometimes just above it usually provides a little relief. I use the heel of my right hand, start above the inside corner of my right eye, and then do a sort of "rolling compression" outward. If I press certain spots, it makes the pain worse, but overall it helps. Best of all, it gives me something non-destructive and non-self-destructive to occupy myself with! The trick is to keep the pressure moving across the area, and find exactly the right areas. Sansert -- This drug is effective for me in breaking most cycles. It's the only effective drug I've found for this purpose. I've tried an array of steroids, beta-blockers, calcium channel blockers, and lithium. No help. Nada. Prozac and hormone replacement therapy don't seem to have any effect. I smoke and drink lots of coffee. In years past I drank regularly, and stopped almost completely about 2 years ago. In years past, quitting or cutting back on any or all of these hasn't made any difference as far as CH is concerned. In the years before Imitrex I used lots and lots of Cafergot, Cafergot-PB with pentobarbital, and as many of the best legal narcotics as I could get. They worked for me, but are almost certainly more dangerous than Imitrex. I was constantly using far more of those meds than was deemed "safe." My blood pressure, weight, heart and liver all seem to be fine at this point, but I do try to be conservative with the meds that have the greatest potential for contributing to heart or liver problems. That's why I try to hold off on Imitrex and Sansert. --Gwen
Gwen <>
St. Paul, MN USA
Monday, July 30, 2001 at 14:29:35 (EDT)

I had my first CH when I was 15. I'm now 38 and have gone as long as 2 1/2 years between bouts. I'm in the middle of one now. My boss just called me in his office and asked me why I've been coming in late over the last few weeks. Time to have to explain this again! If you haven't had a CH, you don't really know what its like. I don't have the words for it, either. I've screamed, punched holes in the wall, rolled on the floor. One of my favorites was (in the winter in Mass) to open the door enough to stick my nose out and push my forehead in the crease as hard as I could and inhale the ice cold air. Now, an ice pack and pacing. I can't sit still when I have one. I certainly can't sleep and then, if I make it to work at all, I'm late 'cause I'm so exhausted from "dancing" the night before. This is madness.
thomas <>
Lexington, SC USA
Monday, July 30, 2001 at 12:12:24 (EDT)

I feel blessed after reading some of the entries on this site. I only have three to five attacks a day during a cycle. I am currently in a cycle. I am a RN and have been suffering for approximately 12 years. I did not know what was going on when I had my first attack. I sought Medical Care for sinus infections etc. I was in college when I discovered after reading a nursing manual, that I suffer from Cluster headaches. I read the informatin and thought "Oh My God" this is me. I have not been officially DX'd with clusters, but plan to see my physician this week. I plan to make him smart on this topic. My headaches have always been KIPS 5-6 with an occassional head banging episode in the past, but lately all have been are 9 to 9.9. It's time to get somthing done. My prayers go out to all whom suffer from this terible affliction. My wife used to think I was "nuts" whenever I would bang my head on the bathroom counter. I shared some of this site with her and she just hugged my neck. She realizes that this is real pain I feel. God Bless all of you:)
Charles Helms <>
Collinsville, MS USA
Monday, July 30, 2001 at 08:32:23 (EDT)

I am glad that we all have this site no one should have to endure thie alone I thank you all
Josh Hansen <>
chicago, IL USA
Monday, July 30, 2001 at 00:39:39 (EDT)

I hope this helps someone. I find almost immediate relief by putting my face in a sink of hot water. I just keep doing it for about 10 minutes sometimes longer. It really works for me and hopefully you also. God Bless!!!!
jim <>
augusta, ga USA
Sunday, July 29, 2001 at 11:09:06 (EDT)

I first started CH age 12yrs that was nearly 40 yrs ago. Then they were daily for about 10yrs with no break at all. As i got older they then gave me a break for about 6mths then attack for about 6mths. Currently i have been attack free for about 8yrs but have just started another bout 4weeks ago. They seem to more intense but proably the fact i have been free for such along time my pain threshold has reduced. Its been great to find this site as i have always felt so alone and there was no one else out there who knew what i have been going through.
Fred Giles <>
Brisbane, QLD Australia
Sunday, July 29, 2001 at 00:03:19 (EDT)

I just stumbled upon your site, looks great! I am in-between CH bouts right now, but I will certainly visit frequently to keep up on the latest developments. Thanks, Pete.
Pete <>
Vancouver, BC Canada
Sunday, July 29, 2001 at 00:03:09 (EDT)

Hello, I am presently in a bout of CH. I am 45 and have been getting CH since high school. I tend to get them every 2-3 years and usually last 3-4 weeks and are then gone again for some time. Ironically, my CH started this time on Friday, July 13th! I have only had 6 episodes so far, thank God. I find that my CH are triggered when I do some sort of strenuous work or exercise. I can guarantee I will have a CH after a cold beer. I have been consuming a large anount of water lately and that seems to keep my CH from occuring. I will keep you updated as much as I can.
Dick Young <>
Columbia, MO USA
Saturday, July 28, 2001 at 22:29:41 (EDT)

(Continued from previous message, please read that one first... DOH!) ...2000. Wow, Imitrex was now my best bud, no doubt. The steroids, however, made me feel really weird, so I stopped taking them without letting the doc know. Then came the rude awakening with my insurance co. They were administering a max of 8 (eight) injections per month. What!? I'm going through 1-2 per day! This only caused aggrevation, thrusting me right into a major attack right then and there. Welcome to hell. Thanks to my doc, he gave me 8 more sample injections while I was appealing to my ins co. By this time I had been on short-term disability from work for a week. I still had 7 more weeks to go before I would see my desk again. "Why doesn't anyone know about these things, and why does everyone keep referring to them as migraines!?" In crept the isolating feelings and reclusive behavior which comes with CH. The daily fear wondering when the next one would hit. This cycle began 2 weeks ago, this time I thought I was educated enough to not have to repeat the same stuff I went through last year with my doc and the ins co. No way. 8 injections per month and no more. How many of you have gone through this: Yesterday, I was on the phone with my doc's office, as they were trying to fax info to my ins co, explaining why I needed one per day. All the red tape through me right into an acute attack, sending to my den to retrieve an injection. The thing was though, I had left the previous syringe, empty an intact, in the loader. I was in so much pain, I forgot to re-cock the loader after ejecting the old syringe. When I loaded the new one and went to pull it out of the case, 'pffffttt...', out came the sweet relief, right onto the carpeting in front of me! Oh my God. In my haste, looking through my left eye only, I repeated the same mistake 2 more times without relaizing my error in loading. As I watched the third and only remaining syringe I had left empty itself onto my floor, I then experienced one of the most helpless feelings in my entire life. That's when things really got bad. I paced, pushing 2 fingers into the base of the back of my neck on the right side, in desperation of some relief. After enduring enough pain that I thought I would stroke-out, I finally sped to the hospital, ignoring all poseted speed limits. I'm at the hospital, in tears by this point (and I'm not a cryer), only to be told I would need to register first. After thinking I was going to pass out from the pain, I was placed in a dark room, on a loveseat, with the lights out. While I sat there, rocking back and forth and groaning, I could here people out in the waiting room laughing and saying, "Wow, what is that guy doing in there?" After sitting there for over an hour, the nurse finally came to get me right at the moment the ch had switched off. I drove home, scalp sensitive to the touch, shaky, weak and feeling totally detatched from life going on around me. My boss calls, he says he doesn't understand how mere headaches could keep me home for this long and that he needed to me to complete a report by cob on thursday. This morning I awoke to my doc's office calling to let me know that my ins co had approved an increase, to 12 injections per month. Woohoo. In closing, I will say to those of you whom are chronic sufferers, I pray for you today, and will tomorrow. You are warriors in life, And you have my unmatched respect, admiration and wishes for increased strength, endurance and tolerance always. May a miracle bless your path as you continue to stare down the devil on a daily basis my friends. Thank God for understanding and supporting girlfriends. Love to all of you cluster-heads from horse-country Virginia. Jon (ps- sorry about the long-winded message, but it sure feels ggod to know I'm not alone!)
jon cross <>
Warrenton, VA USA
Saturday, July 28, 2001 at 00:34:43 (EDT)

Hey everybody! How's your noggin today/tonight? Here's hoping this message finds you all pain free! I've been subjected to periodic ch since '93. My first occurence was while putting my life on hold to take care of mother (God rest her soul), who was given 6 months to live after being diagnosed with lung cancer in June of that year. My first occurence was while sitting in her living room, watching her favorite show Jeopardy. All of the sudden, the back of my neck on the left side heated up and tightened up like a rubber band, as this swiftly radiating pain ran it's course from the back of my head to behind my left eye. 15 minutes later, I was laying on my back, on mother's smooth, cool kitchen floor, moaning and growning, rolling back & forth, thinking I was going to bust an artery in my head. All she could do was stand over me and ask me what she should do to help me. The answers didn't come. 40 minutes later, it was like someone threw a switch, and although I was exhausted from enduring the greatest pain I have ever experienced in my life, all I felt at that moment was instant gratitude. 4 hours later, I was in the emergency room, with oxygen up my nose, an IV in my arm, and was well on my way aboard the good-ship demerol. That first cycle only lasted about 2 weeks. Then they dissapeared for a year, only to come back with a vengeance. That bout lasted for 4 weeks, then they were gone again and didn't return until last year, in 2000. I thought they were gone for good, no way buddy. Introduced to Imitrex and Prednisone for the first time in
Jon Cross <>
Warrenton, VA USA
Friday, July 27, 2001 at 23:54:17 (EDT)

My wife has found this site for me, I am not computer literate, but do have Cluster Headaches, that started about 18 months ago on Christmas Day 1999. I saw a programme on SKY TV two nights ago and found that I was not the only person in the world that suffered from these.
Ken Turrell <>
Bognor Regis, England
Friday, July 27, 2001 at 23:35:48 (EDT)

This is my first time visiting this site,and feel some what releived that I am nt alone.I hope this will be helpful to others.I have to try the water remedy.
Michael Roberson <>
Warsaw, NC USA
Friday, July 27, 2001 at 11:59:38 (EDT)

finally people who understand.i remember getting these really bad headaches from as young as 16 mostly behind my left eye or my temple.then one day my head hurt for a whle week,it a sharp pain at first but then it became a very dull pain that just won't go away.that was the first time that i went to see a doctor,i was then the age of 26.imagine all those yrs living with this monster that would attack every day at the same time for a couple of weeks then dissappear for several months.anyway the doctor told me that day that i sufferd from a condition known as clusters,and a strange relief came over me because this monster now had a nameas far as medication goes he gave me tonopans for painkillers and some red and grey capsules called sibeliums,sometimes i wonder if they work because i still have to stop what ever i'm doing at the time .sit,in a dark place or close my eyes, press my fingers against my usually left temple and prayer that the pain would go away. right now i think i would like to try somthing else,i don't think i'm in the chronic stage as yet thank god but u guys want to hear somthing weird ?.i inhale alcohol vapour when i get attacks,i'm not sure it's the right thing to do but the PAIN o man the PAIN.
david gibson <>
st.james, n/a barbados
Thursday, July 26, 2001 at 23:22:28 (EDT)

I've suffered with these headaches only twice in my life...once three years ago which lasted for only ten days. That time my doctor said it was a virus. Right now I'm into my fourth week and have just found this website. Finally everything that's been happening over the last month makes some sense. I've had CT scans, been to a chiropactor, had acupuncture and every night like clockwork the headache starts...either keeps me awake or wakes me in the middle of the night. Mine tends to be on the left hand side of my head behind my eye - I'm going to see my doctor today to tell him about this site and my self-diagnosis. I feel better now at least having some idea of what my problem is...Do other sufferers believe that given this is only the second time I've suffered CHs that they will increase in frequency and duration now? I'm 36 yrs old now.
john <>
perth, W.A. australia
Thursday, July 26, 2001 at 03:51:32 (EDT)

I am so glad to find this site. I thought I was cured. It has been almost three years since I had an attack...then two weeks ago they started back. Worse than ever. Seem to come in waves. God Bless You All!!!
james <>
augusta, ga USA
Wednesday, July 25, 2001 at 16:52:19 (EDT)

I just found this site today,by chance. I have been suffering from these headaches for 12 years. In the beggining I thought I had an anurism or a brain tumor so I went to see a neurologist. ( probably like most of us ) He put me through all the standarde tests and scans only to tell me that I had a type of headache that was called a cluster. He said not much he could do as the medical field really did not know the cause or any know treatment for them. So I have been living with them. They went away for a couple of years, thought maybe I was finally rid of them. Two months ago they came back worsethan ever. I have 4-5 during the day and the worste ones are in the middle of the night. I am afraid to go to sleep because I know with-in an hour I will be awaiken with the AX in the head. I have to get up and go outside and pace the backyard in the dark. I have tried the oxygen next to my bed and various prescription drugs but not one thing helps. Its hard to beleive that so many of us live with this undiscribable pain. I use a cold wash rag over my left eye when I am pacing, it doesn'nt really help but it feels good. If anyone had any suggestions on what they are doing to get through the night I would be elated to here from you. I haven't slept more than 2 hours a night in over 3 weeks. Thank all of you for being here and listening. Gary ( New Clusterhead )
Gary Bradshaw <>
marshall, mi USA
Wednesday, July 25, 2001 at 15:01:41 (EDT)

I've been suffering for 6 years now with the clusters. It seems like a small amount of time compared to the people on this site. Still....I feel like I'm going crazy. Every year they get worse. The current attacks are 2 or 3 times a day, about a 9 or 10 on the kip scale. I've been rushed to the emergency room so many times I might as well live in the waiting room. The whole affair is costing me everything including my life and my will to go on fighting them. I can completely understand why they are called the demon. I'm in my first year of marriage and my husband can not understand why this is going on. He keeps asking me "why I'm getting them", "why aren't they going away" and "when will I get better so I can be "normal" again". I've gotten to a point where I throw things and scream at him daily when he trys to talk about the headaches. My life falls apart for nearly 2 months twice a year. I would almost sell my soul to get rid of them. Sorry to be so dramatic, but it's really the first time I've really spoke my mind about the whole thing.
Candace Rowlette <>
Salt Lake City, UT USA
Wednesday, July 25, 2001 at 14:15:32 (EDT)

I have had bad headaches since the age of 7 i am know 28 i have done evrything dozenes of doctoers have told me to do very few tings work anyone have something that does work??
Qualls, Mickey <>
M.W,, Tx USA
Wednesday, July 25, 2001 at 14:15:15 (EDT)

I was first diagnosed while in the USN in 1980. As of today I am still having these attack's. At time's I have contemplated suicide. But I'm still here riding out these unbearable attacks. Meds do not work for me. God bless.
Wednesday, July 25, 2001 at 11:09:04 (EDT)

I have been a Clusterhead for over 20 years. Episodes would commence, lasting about a month, and then vanish for 2-7 years. I am currently in a series that is going into its 5th month (ouch!). I have noticed over the years, that the series generally starts After periods of stress (professional or personal), not during times of stress. It seems that when I finally get to let my guard down, my hypothalimus says, "OK, let's get him!" This bout is the worst ever. I am getting three per day. You can set your watch by them. They last anywhere from 30 minutes to 4 hours. My Doctor has put me on a protocol of Verapamil, Midrin, and Neurontin. He might as well have given me placebos for all the good they are doing. The only med that is helping is Zomig if I catch the Beast as soon as I feel that familiar radiation behind my right eye. For the longest time Cafergot was doing the trick. In fact I found that taking a cafergot right before going to sleep at night gave me a Beast-free, full nights' sleep. I don't know why my Doc has changed things. Cafergot is not compatible with Zomig so I can no longer take my preventitive dose before bedtime. I need a new Doctor; a Neurologist schooled in the ways of Cluster Headaches. If anyone know of one in Central Florida, please email me. And to our web masters: Thank you for this site. Thank you for the time , effort and love you have invested in creating such a comprehensive rest stop for those of us that share this disease. You and this site are truly gifts.
Tom McCabe <>
Orlando, FL USA
Wednesday, July 25, 2001 at 06:14:14 (EDT)

I have just reciently been diagnosed with cluster headaches, I thought that I had a stroke. The pain at times have been unbearable, I was happy to find that there are others out there that can relate. Friends thought that I was crazy when I discribed the pain that I had had. others gave it names as Bels palsey, a stroke ,and have not ruled out completely that there isn't a brain tumor. @ 34 I am very afraid of the power the pain has, I hope that there will be some relief soon I rarly go without headache pain, almost forgot what that was like. And fear most of all another attach will leave me speachless Again! Thanks for the site!
Maria <>
Brunswick, Oh USA
Wednesday, July 25, 2001 at 05:23:57 (EDT)

I started getting cluster headaches in 1988, at the age of 38. I had them fro four of five years before I even talked to a doctor about them( I thought they were just bad sinus headaches which I get too). I was lucky. He diagnosed them immediately as classic cluster migraines, his words. I felt kind of proud; man, I've got some classic headaches. He prescribed cafergot which worked, but with the caffeine kicker that is used it kept me up all night, but painfree, as oposed to being up with a headache. I eventually developed a tolerance to cafergot and it stopped working. I then was prescribed Ultram by my neurologist which worked fine. Its supposed to be a pain medication, not a vasoconstrictor, but worked well. Unfortunately, I developed a tolerance to that. I use Imitrex now and it works fine, when I catch the CH just starting. If the CH has a half hour to get started, or longer, Imitrex doesn't work completely as is does on a starting CH. I feel I am lucky, especially after reading the descriptions of what some of the folks go through. I don't believe mine have ever been that severe. An incredible pain in the ass, yes. The longest cluster I have had is six months. That one used up my cafergot and Ultram tolerance. I rarely get more than one CH a day. The most I have had in a 24 hour period is three, and that is rare.
George Sturgis <>
Houston, Texas USA
Tuesday, July 24, 2001 at 18:36:59 (EDT)

Have had cluster headaches since I was 16. I am 36 now. Usually come in spring, sometimes fall, and last 4-6 weeks, about 3-4 per day. When I first got them, I thought I had a brain tumor and was dying. I was diagnosed the first year, but I didn't take any medicine or seek any help until I was 22 years old in college, and had them during my finals. I used to go outside and breath deep and find a dark, quiet spot. I found Excedrin helped the low level pain before and after the main excrutiating pain. It is always in my left eye. You can't tell people you get cluster headaches because they don't understand the pain, they think they get them too - what a joke. Also, many doctors are morons and misdiagnose you, even after you tell them what you experience, which is exactly all the symtoms of cluster headache sufferers. I have been lucky and have not had clusters for the last three years - I'm hoping my body chemistry changed and I won't ever get them again. I always forget the magnitude of pain experienced when I don't have them, because you I imagine pain that great. I do remember that I would rather cut off an arm or leg to redirect the pain in my head, and I have gone into fits of rage during the cluster. I have found if I can sit in a dark, quiet place and breath deep and try to think of nothing to empty my mind, I can make it through the pain. This is probably because they only last for about a half hour. Many times I get them at work, and it is difficult to get away from meetings, etc., and people don't consider a headache a legitimate illness, but beleive me, I'd rather have a broken leg or arm. I eventually ended up at the John Grahm headache clinic at Faulkner hospital and was very happy to deal with people who knew what I was experiencing. I was on prednosone one time and tried Sanserts one year, but I don't take care of myself very well so I didn't keep up with the medications. So I usually just suffered through without anything but Excedrin, which contains the caffiene, which helps a little for the smaller pains. I didn't know this before going to the headache clinic, I just knew it was the only thing that helped a little. Like I said, I haven't had a cycle for three years and I hope I never do again, but I know the pain and it's good of you to set up this website so people can swap methods used to help them get through their headaches. Are there people who have these go away forever?? I would be interested to know, and I hope I'm one of them. Thanks.
Tom O'Leary <>
Methuen, MA USA
Tuesday, July 24, 2001 at 12:37:38 (EDT)

WOW! It's nice to know I'm not alone! I'm searching for cures/treatments like everyone else and I look forward to any and all things that seem to help. Feel free to contact me, though I might not respond immediately as I check the e-mail every other day or two. God Bless our quest!...Mark
Mark Bernhard <>
El Cajon, ca USA
Tuesday, July 24, 2001 at 12:32:20 (EDT)

Hi! I have suffered from CH for 27 years, typically annual 6-12 week episodes. Had one "break-off of 5 years, but the demon returned.... Initial attacks typically every second day, of some 15 minute duration, not unbearable, building up to 3-4 attacks daily of extreme intensity (9 RIP scale)lasting up to 2 and even 3 hours. I was hospitalised twice (1981 and 1983)and the neurosurgeon successfully stopped the episode in both cases by injecting cortisone into the eye-nerve (procedure not recommended - general aesthetic required, could cause damage to eyesight). Fortunately, in 1992 we discovered sumatriptan injections (in South Africa available as Imigran injections) which bring almost immediate (5-10 minutes) and total relief. Wonderful stuff, despite the high cost! I am currently being treated by a neurologist who has done an EEG and found brain activity patterns similar to those of an epileptic sufferer. He is treating me with Epilim (300mg 2X daily) plus high dosage cortisone (orally as Medrol, 32mg daily) plus flunarizine (as Sibelium, 8mg per day). He has has very good results before and believes that this could be a permanent cure! His most well-known patient I believe to be ex-president FW de Klerk (Nobel prize winner) who apparently was cured permanently!(I cannot vouch for this though and have it on heresay only). Maybe this helps some of you - I pray for those who have not found a cure as yet, and for those who suffer in silence because they have no access to a knowlegable doctor.
Leen van der Bijl <>
Midrand, South Africa
Tuesday, July 24, 2001 at 11:02:34 (EDT)

I have been a sufferer of CH for the last 33 years ( since I was fifteen). During that time I have tried many things to alleviate the pain. Nothing much helped. This was made more difficult because I had nowhere to go to discuss this problem. My doctors had rarely heard of the subject or if they had treated it very lightly. So can I say how pleased I am to have come across this site. Two things that have beem useful in these years of CH are that as I approach 50 the gaps between attachs seem to be getting longer. I used to get attacks every 6 months and they lasted for approximately three months each. Now I have been free from CH for just over 3 years. Also I found that if I stop drinking alcohol when the first attach comes on then the subsequent attachs are very slight.
David Costello <>
London, England United Kingdom
Tuesday, July 24, 2001 at 07:11:40 (EDT)

I was just declared a clusterhead by a nuerologist today. I knew those weren't just migraines! No wonder the medications couldn't stop the attacks. Anyway, great website. I've already learned a bundle and yesterday I had no idea what a clusterheadache was. Thankyou for the sharing and insight.
Gil <>
Victoria, BC Canada
Tuesday, July 24, 2001 at 00:57:24 (EDT)

Hello everone. My name is Sandy Dingess and my husband Lawrence has suffered since age eighteen with ch. He is now 46. He has seen nuerologist at Duke University and University of KY, He also saw Dr Diamond at his Headache Clinic in Chicago. I am a Respiratory Specialist and a Doctor I worked ER with diagnosed my husband with ch. He also referred him to Dr. Diamond. Dr. Diamond put him on Decradon, Lithium and Xylocain nose drops, DHE 45 , oxygen and narcotics. He was put on a very strict diet. No spices or msg, yeast, red meat, etc. After a year on this my husband suffered less. That was in 1985. Strong odors will trigger an attack also. I choose soft perfume and lotions etc. I have to do my cleaning when he is away to avoid the smell ov cleansers. I have held my husband hand while he begged me to kill him during a nine week attack. I have crawled with him on the floor, watched him bang his head, hit his head with anything he could lay hands on. We do not have guns in our home, because we both are afraid he would use it to end his misery during a cluster. I worken midnight shift and I wuld beg him to not kill himself while I was gone with our children in the house. Finally I would let the children sleep at my parents house Next door, just in case. He is chronic, but with help of the drugs that Dr. Diamond prescribed he is more manageable now. He does get worse with weather changes. Our greatest fear is that the Demon will come back full force as they were when he was younger. He takes seizures now and his health is not good. I don't think he ( or I ) are strong enough, physically or mentally to live through a full force ch. He missed out on so much with our two sons. It almost seems like he was an absentee father, because he spent so much time in hospital, or they were at my Parents because we didn't want them see their Father writhing on the floor moaning and begging God or someone else to kill him. I advise the sufferer and their family to find a good counseller. I became very depressed myself and that can be a very dangerous situation. Once in 1985 for just a nanosecond I almost agreed to help my husband kill himself after nine days without a break. So PLEASE if your loved one suffers from this kind of head pain and you even remotely feel this way, Get HELP. Also I called my family in for support. I wouldn't let myself be alone with him during a full force attack. I was afraid. Hope I haven't talked too much, it's nice to have someone to talk with who really understands what it is like for them to suffer the way they do. The family members also suffer, albeit it is emotional pain and not physical. Blessed relief to you all. God Bless.
Sandra L. Dingess <>
Hatfield, KY United States
Monday, July 23, 2001 at 23:43:00 (EDT)

I've had clusters for about 15 years now. I have tried a wide variety of natural and prescribed drugs. I can tell you that prednisone, lidicane, and lithium only increased the intensity and onset of my headaches. I had seen a neurologists who had put me on these , when they made my symtoms worst I went back to my GP who told me that these would increase my headaches. He then put me on verapomil and amitriptyline. We had to tweek the dosage, but found the right mg to meet my condition and trust me I was free of clusters while I was on the meds. I am going on my third year of remission and hopefully longer. Sometimes in my earlier years I tried peppermint oil. Putting the oil in hot water, then soaking a rag in it and just putting it over my face and deeply inhaling seemed to manage them sometimes. I also best describe my clusters to people who do not understand that they feel like a brain freeze when you eat ice cream too fast and it last for 2-3 hours.
Lloyd Lapeyrouse <>
Houma, La USA
Monday, July 23, 2001 at 22:08:26 (EDT)

I'm 38 and had my first cluster 20 years ago. I went through being told it was sinus and dental trouble until CH was diagnosed after 2-3 years. Initially the attacks were diagnosed as chronic, although they were in effect a series of mini-clusters which lasted between a week and two months with breaks of a similar length between. Over the years they have become more classically episodic with clusters lasting between one and three months and pain free gaps of up to two years. Clusters generally commence in Spring or Autumn, however my current cluster commenced in June. I have an attack every night one hour after falling asleep no matter if I go to bed at 8pm or 2am. During the day I may be okay or have one or two relatively mild attacks, but the occasional day is hell with three or four bad attacks. The only thing that works, or has ever worked, is Imigran injections, my thighs looking like bruised pin cushions is a small price to pay.
Gary <>
Reading, UK
Monday, July 23, 2001 at 15:58:50 (EDT)

I tried Topomax and it worked for me-I had clusters since 1978-I feel for you all.
Lee McPeters <>
Midland, Tx USA
Monday, July 23, 2001 at 00:18:57 (EDT)

Hello everyone: My name is Melisa Avalos and i have been suffering from cluster headaches for about a year now.When I first recieved my first one I was terrified and I didn't know how to handle them.At first I thought something weird was happening to me.My first thought was that I had done something to prevent this from happening.As I write this I am suffering from one right now.But my first experience was on August 28,2000 and it was 3:00 in the morning and i woke up in this heavy sweat and I was in tears and by that time I had awaken the entire house,my parents felt so helpless they didn't know what to do and I was scared that i was going to die and at many times i have just wanted to die because the pain was so painful and i couldn't do anything to stop it.All i could do was cry in that moment and felt that maybe crying would make it go away.Sometime i feel that nobody can know how i feel but now i know i am not the only one that suffers and that there are people like me that goes through the same pain. Well I am almost 21 and i know i wil have these for the rest of my life now so i guess i will continue searching for a cure.who knows maybe someday someone will so that we don't have to suffer anymore.and i know in my heart that god is watching over us everyday and he is taking care of us too.believe in god and he will believe in you too.well if anyone wants to talk feel free to write me. love always melisa
melisa avalos <>
lincoln, ca USA
Sunday, July 22, 2001 at 23:23:44 (EDT)

Hello again. I,ve recently been courting the beast again. The pain is much lighter than years past. I always thought i was being punished by god or something till i learned from my mother that many in my faimly have ch.s. I've lost 2 cousins to this and strangly enough,we were all the first born males of our fathers. The pain doesn't kill mind you although you wish for death easy enough on a Kip 9 or 10! i have 1 maybe 2 every 2 days that last exactly 1 hour. My prayers go to you who have more. I would also like to note that from my own experience of drug free help.....Stop smoking,dipping, & drinking! Also plenty of exercise. ( I never get them at work or any time i'm in full gear) Strong fumes also bring the beast on such as perfumes, exhusts, chemicals....etc. hang in there!
Denham Springs, LA. USA
Sunday, July 22, 2001 at 17:11:29 (EDT)

When I saw your comment regarding drugs I thought that there must be some mistake. Luckily you have the Medical information We would all love to go through life drug-free, but if taking medication means the difference between relief and going mad, well.....
Diana <>
Billings, MT USA
Sunday, July 22, 2001 at 12:40:37 (EDT)

I have suffered from cluster headaches for about 6 years, and tried just about everything before finding something that actually worked. For me the only relief was to stop the headache before it ever got started. Once it starts it runs its course no matter what I do. This treatment has been effective for me I have been free from headaches for about 18 months now and it feels wonderful.
Tim Rolen <>
Jacksonville, Fl. USA
Sunday, July 22, 2001 at 10:56:56 (EDT)

Just found the site. Can't beginn to say how good it is to know I'm not alone with this nightmare! I use Imigran Subject (injection kit) after 20 years of agony this is a great help. It kills the mega pain in 7 minites.My Doctor is moaning that it's too expencive, but i would do anything to get this dru. ANYTHING!!!
Jerry <>
Southampton, Hampshire England
Sunday, July 22, 2001 at 09:31:39 (EDT)

i am a sufferer of cluster headaches for last 25 years.i have been badly managed during this time by gp's who have had little knowledge or expertise in this area. i was originally managed on pain killing opiates eg pethidine. this i now realise only exacebertated the problem and gave me short relief in the excruciating long term of these episodes. i find the label headache most opposite to the pain i experience. the word ache is a long way from the agony i experience up to 8 times per day. recently i was referred to a doctor who specialises in this area and was given a recipe for management. i am now into my 6th week of probably a n 11 week episode and am happy to say that through twice daily self injection of imigran and administration of oxygen when needed, has kept this devil from my daily life. the cost of this has put a major strain on my family's finances costing between $150-$260 per day as there is no govt subsidy for these injections and unfortunately in tablet form , which is subsidised ., has no effect. [as joanne's husband the cost is extreme but the injections the only thing which allows us both and our family to function every 2-3 years for 8-11 weks when they hit] the sense of isolation i have felt in trying to explain to family and friends the agony and hell i go through each day and especially at night has been diminished by finding this site, resulting in a recent handout to my 10 staff of a download from this site explaining the unusual aspects of this disorder. thank you so much and i hope you can find the right recipe of medication to suit you. has anyone in australia lobbied the govt for subsidy? joanne lennard.
joanne lennard <>
Saturday, July 21, 2001 at 05:58:37 (EDT)

I am just getting over an episode and am in the mists of a minor attack. Even though it has only been 4 weeks, it's seems as though months have passed since I have felt normal(speak'n relative). What a relief it is to have found that I am not alone, although I would not wish such a horrible thing such as clusters on my worst enemy. I have had 3 major episodes in my life, seperated by 5 years each. They tend to last for three to four weeks at a time and attack me all day long with the worst assualts coming in the night. My afternoon and evening attacks generally last three hours at a time and the only relief that I have found is to knock myself out with a large dose of Demeral. I have tried all sorts of treatments and they include: Prednisone, lidicaine, Imitrex(pill & nasal), DHE(nasal), Amerge, Oxygen, and prayer(I am not even religious). While Imitrex nasal has helped me with some of the lesser attacks, I have found nothing to even assist me during the worst. As with most, my doctor first diagnosed me with sinus infections(whata joke,huh?). I am lucky to have a doctor whom I know on a more personal level so that I am able to have Demeral on hand when my episodes start. It has kinda become my security blanket. Without it , I am sure that I would not be here now. I can deal with an hour or so of this horrific pain but by the second or third hour I am ready to do whatever is needed to end the assault, and I do mean whatever. While I have been in as much pain as the human mind can stand, my heart goes out to those who may have it worse. If there are any physicians out there reading this, make it your lifes ambition to find a cure or at least a treatment. It is far worse than even the most colorful descriptions that you have heard. Please help us!!
brian <>
Norfolk, VA. USA
Saturday, July 21, 2001 at 05:26:07 (EDT)

I'm 45 & have suffered for more than 30 yrs. I've also recently suffered from a stroke & seizures. I am glad to know this site exists. My CH seem to relate to my periods & extreme stress. If anyone out there has ideas or suggestions I am open to them. Thanks again for this site.
Barbara Chatham <>
Woodstock, GA USA
Saturday, July 21, 2001 at 01:05:48 (EDT)

I have CH's that last 3-4 hrs each, 4 times/day, for around 4 months. I get about a 14-16 month break between each of these episodes. This has been going on for about 15 years. I pray this hell will end someday.
Daniel <>
Lexington, SC USA
Friday, July 20, 2001 at 23:11:45 (EDT)

Ihave had ch for about 10 years. I am having them now. At least 1 0r 2 every night. They usually start about 1 hr. after I go to sleep. I have found that hot compresses works best for me. The hotter the better. I took Zomig for a while, but just couldn't afford to keep taking them and I really don't think they helped. Thanks for having a site, cause noone I know has these things and have no idea what I am talking about.
Cody <>
Friday, July 20, 2001 at 21:52:23 (EDT)

I have been suffering from clusters for about 30 years. Have had some success with butalbita. today the dr. prescribed duradrin. I could use some feed back on which drugs are the most effective. the neurologist was not to impressed with fironal . Would love any and all feed back.
Bill Pritchard <>
Janesville, wi USA
Friday, July 20, 2001 at 17:23:58 (EDT)

Today is Today is Friday. It is the first 24 hour period that I have not had a headache in so long I can't remember. Like many of you I was first diognosed with sinus problems. Three years ago, after a few referals the word clusterheadaches entered my vocabulary. Last Sept. I started taking verpamil on a daily basis either I was at the end of my cycle or it worked. Then in January of 01 the headaches started again. They would give me a day or two break for a few months but then be back with a vengence. In June things went from bad to worse. The headaches went to 2 or 3 a day . My doctor put me on lithium and off of verpamil. The headaches then went to 5 and 6 per day. I started running out of Imitrex shots, which was not very pleasant as all of you can imagine. After about 4 weeks of that I was getting scared to leave the house and go anywhere. Then I read that most clusterheadache patients use both verapamil and lithium together. The doctor agreed to give it a try and I am hoping that this is the end of this horrible cycle. I must admit he is a very caring doctor I just don't think most of them have that much information on clusters. God Bless All
Lee Shultz <>
Milton, WI USA
Friday, July 20, 2001 at 07:51:32 (EDT)

I am 55 years old and have suffered from CHs for 37 years. My CHs started immediately after getting hit in the left eye and cheek with a baseball. Doctors said I did nerve damage? I thought I was one of a kind for 20 of those years. I have tried ever drug available but for last ten years limit my use to Imitrex and Oxy. What a life saver these two drugs have been. I am Episodic, every 1 to 3 years, however last three or four cycles have been approx. 3 years. My current cycle started last month in June. I started looking on the internet for updates on migraines and found your site. When I found I went into shock, unbelievable, what a great way to share our problems. I do not discuss CHs with friends or business Assoc. as you all know they just don`t understand and trying to explain is meaningless, because when your done explaining there is no satisfaction and you wish you had kept your mouth shut! I am a Real Etate Developer and socialize dailey which includes alcohol on a regular basis . My cycles last from 3 to 5 months. I buy Imitex by the vial 6mg/0.5ml and get three shots per vial and inject myself with insulin needle. I average 5 to 6 shots per day and have not had to go thru a full blown CH for last two cycles. During the day I shoot-up at the first sign of onset . I average about two hours of sleep a night and have to deal with more pain. We all know what its like to wake from a deep sleep trying to get your medicine with one eye and pounding pain. Before Imitrex I don`t know how I survived, there were times I seriously could have ended it all. My Doc. and Pharmacist are my best friends and supply my needs, like everyone else I fight with the insurance co. money to them is more important than my pain. DJ you have provided us with a service that is beyond words, I personally want to say thank you.
John Youngblood <>
Albuquerque, NMI USA
Thursday, July 19, 2001 at 10:00:16 (EDT)

First time on the site, what a relief to know that there is something like this.
Andrew Perepeczko <>
Edinburgh, Scotland
Thursday, July 19, 2001 at 06:38:42 (EDT)

Well, it has taken me 4 or 5 month's to get the guts up to place a few words here, I wanted to say something special and enlightening but there are those who have already written so much and probably far more eloquently than I ever could. So what I am going to do is just write a little about myself, my CH's and what this site meant to me when I found it. My name is Steve, I am 30, married with a wonderful (if disruptive) 3 year old son. I live just outside London, England in a place called Slough (those poetry followers amongst you may have heard of it from Sir John Betjeman, although he was not very complementary about the place !). I have been suffering on and off for the past year and a half but currently I seem to have been suffering without remission since February. I have been trying to be positive about things, it's not terminal and I don't get them 4 or 5 times a day like some of you guys and girls out there , but at least one attack of 7/8 intensity(See Kipp scale!) almost every day at anytime from 11:00 to 03:00 for the past 6 months and it is taking it's toll. I suppose that's whats made me put fingers to keyboard and finally get these words down. I am completely worn down now, I have pushed through the last 6 months with my head held high and as much of a positive attitude as I can but it is getting harder and harder. I have Verapamil and I am not sure whether it is helping anymore, I think it might have been to start with but may not be now however I am afraid to stop taking it in case I end up getting more attacks each day. The Imigran (Sumitriptan) only seems to work 20-30% of the time, but that hope of quicker relief, even if it isn't very great, still keeps me popping the little buggers. Although I found this site 5/6 months ago I haven't been actively involved in it, but I think it is time now, it's difficult to go through this alone. I must say a HUGE thank you to all involved in this site, everyone who has written advice and comments etc sufferers and carers alike. To find out that I am not a fruit loop because I do laps around my sitting room, hold my head up against cold glass, press my temple 'til it hurts, put my head between my legs, curl up in a ball etc etc etc. To hear the phrases "Shadow" and "Dance" and be able to relate totally somehow gives me a sense of belonging, even if it is to an exclusive club that I would dearly love to leave. To find the pain I suffer described down to the last detail, the pin point of pain behind my left eye and in from my temple, the extension of that down my shoulder, the strange feeling (if frustration was a feeling this is what it would feel like) all down the left hand side of my body and the watering eyes, runny nose and droopy eye. I am not mad, just a clusterhead. So here I am, time to enter the realm of CH.COM properly, e-mails welcome, not sure how my company will feel but contact with fellow Clusterheads will be worth it. Best wishes and long remissions to all. Steve
Steve Ireson <>
London, England
Thursday, July 19, 2001 at 06:36:15 (EDT)

suferrer of ch for over 20 years. ouch!!!
don young <>
carver, ma USA
Wednesday, July 18, 2001 at 20:45:37 (EDT)

Hi once again It's been awhile, but I knew I would be back. Only this time I have a message of hope. I am a long time sufferer but my periods of remission are becoming longer and the headaches are decreasing in intensity even though I'm geting more of them than ever (4-6 a day). It used to be once a year, then they came every 18 months, now it's every 2 years. I stopped smoking after the last bout and I started taking feverfew (an oddly named herb) on a daily basis. Whether this has helped or not, I don't know, but these most recent headaches have been very other words, no rolling on the floor or vomiting. I'm also popping a Zomig pill at the first sign of a cluster. Oh well, at least I catch a little bit of a buzz. Good luck to you my comrades-in-arms. May the beast someday be destroyed.
Mark Connell <>
Elmira, NY USA
Wednesday, July 18, 2001 at 18:16:04 (EDT)

I have been "dancing with the devil" for the past six years. I've gone to several doctors who tell me that they are migraines, prescribe me some Imitrex and tell me to call them in the morning. They just don't understand. I really love those people who tell me that they get "bad" headaches also. Really? Let's redefine "bad", shall we? Here's a knife in your eye, how does that feel? And just for kicks let me twist a little. I understand that they are just trying to sympathize, but I started getting frustrated-no one knew or understood what I was going through. Now, I know better. This site has been a blessing. While reading some of your stories, I realized that there are others that know what I have been going through, and that makes me feel better. I do not wish this condition on anyone, but knowing there are others who truly understand what I am going through, helps me tremendously. Thank you all.
Brian <>
Bethesda, MD USA
Wednesday, July 18, 2001 at 10:55:43 (EDT)

hello.. well i'll jion your lil headaches are really getting to be a pain in my rear as well as my head..i'm running out of things to take for them i get migraines bad every other month round my period i have asked the doctor and he just says it is part of growing older..well i think i need a new doc..i get them so bad i throw up..tonight i took 2 excedrin migraine pills and 2 reg ibuprofen and 2 generic sinus pills all bout an hour apart..i know stupid to do but it hurts and i feel like i'm on my own to fix this..anyone with a better idea email me
linda <>
cassville, mo USA
Tuesday, July 17, 2001 at 20:04:49 (EDT)

I first started getting CHs in 1981 during my junior year in high school. I went to a Ear-Nose-Throat doctor who proceeded to give me a series of very painful shots up my nose over several weeks and then declared that my sinus headaches were cured. Of course, it was just that my cycle for that season had ended. I put up with them as best I could after that, not wanting a repeat of the shot ordeal. Then in 1993, I went to my in-laws' doctor for an unrelated illness and described the headaches to him. He just happened to specialize in headaches and he said that I had the classic symptoms of clusters. He put me on Verapamil and about a week later the cycle ended. I'm currently in my fourth cycle since that time. The past three were stopped by Verapamil and I just took my first pill today for this cycle. I am hoping that it will work again as well as it has in the past!
Tom A.
Springfield, MO USA
Tuesday, July 17, 2001 at 15:58:07 (EDT)

Tuesday, July 17, 2001 at 13:14:30 (EDT)

thank you for this site. The last time I got online to research this topic to have my insurance company approve O2 therapy, there was little information. Luckily I was able to get my insurance company to approve the treatment. Now that I am with another insurance company, I have to go through the same fight again. I was pleased to see the vast amount of information now on the internet to help aid me in my insurance company fight once again!
Kurtis Harrison <>
Burton, MI USA
Tuesday, July 17, 2001 at 09:15:17 (EDT)

hello clusterheads bites dont it
steve <>
euless, tx USA
Monday, July 16, 2001 at 15:02:16 (EDT)

How good to find that I am not alone with the Devil. Oxygen sounds interesting. Do any of you guys know where I can learn more about it? Maybe it can help me. I have tried many different things (yes, head-banging too) but not oxygen. Not yet.
Karl-Erik Liljeros <>
Stockholm, Sweden
Monday, July 16, 2001 at 09:17:38 (EDT)

Hi. I've been suffering for 17 years now. I first thought I was having migraines, but two or three years ago my doctor diagnosed cluster headaches. I'm now into another cycle after over a year in remission. I'm very glad to have found this site. I really can't explain how clusters feel to those who don't suffer from them. Thank God my wife understands. Prednisone has worked very well for me in stopping the cycle. Thanks for being available for we sufferers.
John I.
Peoria, AZ USA
Monday, July 16, 2001 at 06:41:07 (EDT)

Ihave been having cluster headaches for about 17 years.I first went to an elderly eye, nose &throat doc who probably helped me more than any doctor has since. He would pack my nose with some medication and sit me under a heat lamp for a while and the cycle would disappear. He's long retired and at that time I didn't know that these were cluster headaches. I've since tried to explain this treatment to other doctors who've all just dismissed it.I probably went to about five different doctors before I was diagnosed with cluster headaches.I've tried a battery of different medications and none have helped like that old fashioned remedy did. Actually I'm lucky enough to have been in remission for the last three years but now they are back with a vengence. Gotta go, headache time.
Steve G <>
Kankakee, IL USA
Monday, July 16, 2001 at 00:46:42 (EDT)

Hello everyone, just found this site tonight. Read through several of the recent posts and decided to add my own. I am 44 years old and have suffered CHs for about 25 years. They started out as chronic, everyday, middle of the afternoon and would last for several hours. Only one per day, thank God! Over the years they have become episodic, USUALLY spring and fall, one or two every day or two for six to eight weeks. The most recent (current) episode started about six weeks ago with one to three headaches, usually during the night lasting for five to fifteen minutes. For the past week now, the demon has decided to throw in one of the long versions (4-8 hours of pure hell) every day on top of the short versions just for kicks. Early on, I visited all the usual neurologists, had all the CT scans, etc just to find that there was nothing wrong with me. Finally one Dr. here suggested that I visit the Diamond Headache Clinic in Chicago, IL. Dr. Diamond is the one who finally told me what I had. He prescribed all the usual meds all of which had no effect. I eventually gave up on him and just tried to "deal with it". The past two years I have talked to my GP and we have tried Imitrex (nasal spray) which worked wonders the first few times I used it, then during the next episode, no real effect. He then prescribed Prednisolone, high dose to low over a period of six or seven days. The first time it seemed to break the cycle immediately, the next time I think it worked but took longer. Will be making an appt with him tomorrow to see if I can break this episode. Have missed two days work in the last week. Can't get much done around the house, let alone feel like I can go anywhere. Please, all who suffer, I feel for you, I know what you are experiencing. You are not alone. Keep searching and asking questions, what works for me may not work for you and vice-versa. Please feel free to email me with questions or advice, I will listen to anyone. God bless all, good luck.
Gary <>
Indianapolis, IN USA
Monday, July 16, 2001 at 00:25:03 (EDT)

I was diagnosed with cluster headaches when I was 12 years old, I am 26 now and I rarely have episodes. I started a cycle yesterday and luckly they seem to last only a few days with an average of 2 per day and in the late evening. Peppermint oil works and an aromatherapy option, to a degree. I wonder if mine are really cluster headaches though after all of this time, because I will go for month being just fine and they effect my vision in the eye on the side the pain is on... Thanks for the site, the infomation seems very useful.
Kristi <>
saint louis, MO USA
Sunday, July 15, 2001 at 22:46:44 (EDT)

Hi I am now 68 and had my first Headaches 1991.Diagnosed as CH 1993.First two years were bearable. 1993 they were severe. Unfortunately I was overdosed on Prednasone and underdosed with Verapamil. Off and on from 60 to 30mg of prednasone and max 240mg of Verapamil. (Period over 4 month) I had extreme Side efeects. Bone loss ( lost 6 teeth. Hepatitis, Liver function readings 10 times off normal. Changed to a different neurologist who managed to to bring the CH under control within 3 weeks. I believe the overdose of Verapamil in the amount of 600mg /day did it. I continued between 600 and 480 mg /day for 6 month without getting into the "mode cycle" Was free of CH for three years.Oxygen was the biggist help when getting the CH. I had plenty of them, many times 6/7 times per night at a max pain level of #8 and #9.While in the mode, a teaspoon full of wine or any alcohol would trigger CH's. I kept a daily record and made up a calender showing the relationship of number of CH and medicine taken. Only warning I like to give is do not take Prednasone for to long and do insist to have you liver checked via blood. I do not think my daily records are usefull to anyone other then someone who truly wants to study this as a med student or an extreme dedicated Dr who has the time. I can't think of any one. The calender is the same also color coded so please do not ask for copies unless you find a doctor who is truly interested. E-mailing them in B&W does not make any sense. In any case I just found your web site with the statistic's which eventually ought to shed some light on this torture desease. Godd luck and with great ampathy Helmut Zitzwitz
Helmut E Zitzwitz <>
Dobbs Ferry, NY USA
Sunday, July 15, 2001 at 22:21:14 (EDT)

Hello and thank god for this web site,a place where people actually understand and I can get more info. Peace to all and stay strong.
Matt Wojcik
Limerick, PA USA
Sunday, July 15, 2001 at 20:58:39 (EDT)

Hi People!!! I'm so glad I've found this website!! I am 33 and have suffered from cluster headaches since I was 9. It's good to know there are so many out there with the same symptoms and terribly intense pain as myself. I have been pain free for 15 months now but I am dreading it coming back any day now as this is the longest I have ever went without pain. Anyway please feel free to e-mail me for support.
Grahame <>
Aberdeen, Scotland
Sunday, July 15, 2001 at 13:20:38 (EDT)

My husband has been having severe headaches for quite a while now. Last week he finally found a doctor that told him it was from CH. He is going to see a neurologist in September. The soonest he could get in. I really dont know how he is going to take it till then. The doctor gave him zomig (the price of that on it's own will give you a headache.) He really dosnt know if it has given him any releif. I am glad that we found this site.
Jackie Seifferlein <>
Alpena, MI USA
Sunday, July 15, 2001 at 11:18:21 (EDT)

I'm so thankful for this site. It shows me that I have much to appreciate. I'm 40 years old and have been getting CH since I was 14. They only come every two years and they generally only last 4-6 weeks. I have found some very caring neurologists that have helped me get through since I was 32. Oxygen works great for me and this time I am trying Verapamil. Just started, so no idea if it will help. Im sure believing it will. My heart is with all of you.
Pat Baker <>
Boise, id USA
Sunday, July 15, 2001 at 01:08:12 (EDT)

I have been suffering from six week cluster episodes every year since 1997. I am a month overdue this year and my husband and I would like to start trying to have another baby. With our last child, I was cluster free until he was one week old. I was able to nurse him by taking Excedrin every three hours but know I can't do that while pregnant. Does anyone know anything or have any experience with clusters while pregnant? I can live through it without my imitrex, but not without the excedrin... any ideas? Thank you!
Karyn Gramando <>
Hampton, VA USA
Saturday, July 14, 2001 at 18:41:26 (EDT)

The boogey man is real.
Dennis <>
Tyngsboro, Mass. USA
Saturday, July 14, 2001 at 18:39:07 (EDT)

Knowing that you all are going through much the same thing as I has given me hope during my first three days of CH. If others can can I. I won't let others say I am crazy...this is real.
Pamela Gillin <>
Haymarket, VA USA
Saturday, July 14, 2001 at 08:49:30 (EDT)

Visited your sight for 1'st time tonight. Got lots of questions. How do I get them answered?
Jeff Adams <>
Goldendale, Wa USA
Saturday, July 14, 2001 at 00:48:27 (EDT)

Finally, some people who know exactly what I'm going through. I've been a sufferer of CH for the past 20 years, but it wasn't until 10 years ago that I discovered what my ailment was. I've been in remission for the past 2 years, but since the beginning of July, 2001, I've had the worst bout w/ CH since I can remember. It's daily sometimes 3 times per day w/out ceasing. I'm following the doctor's instructions, staying away from msg, caffeine, salt, lunch meat, etc...trying to get my rest, and I'm praying to God that this pain goes away. Sometimes I think that death would be better than the Hell I'm experiencing now, but I have so much to live for. A supportive wife and 4 beautiful children. But it's comforting to know that I have a support group and I'm grateful to have found this website. Regards, Sam
Friday, July 13, 2001 at 23:57:32 (EDT)

Where can I get discount Zomig???? Is it available without perscription in Canada or Mexico???
Mary Gregory <>
Corrigan, TX USA
Friday, July 13, 2001 at 12:19:04 (EDT)

I am on week 8 of the cycle, no relief, no sleep, to many med's so I am not myself. I can't even drive somtimes because of the drugs. I have been suffering for 5-6 years, and I am very glad I found this site. I have been reading some of your stories and beleive me, I feel for you. It seems like the Doc's just don't care, but they have no idea of the pain we go through, the misery of possible losing a job, family members, life stops when the cycle hits and for me, I get them 5-6 times a year and each cycle lasts 6-8 weeks so basically, all the time. This last one, WOW, what a duzzy this one has been. I have never been in so much pain before, but I think they may be slowing down, well I thought that 3 weeks ago and they came back full force again. 6-8 headaches a day and they are all about a 8-9 in intensity. I hope someday the Doctors will understand our pain and really try and help us! Good luck to everyone and remember, although it seems hopeless, they will go away! Hopefully!
Kari A. Fletcher <>
Friday, July 13, 2001 at 09:58:16 (EDT)

I have been a sufferer for a number of years with no relief.All the doctors I have seen tell me to plod along with my medication. On a scale 1 to 10 sometimes it is over and above. I quoted to my doctor that one day driving "the lamp post looked really good". Right now I'm having a bad night. Thanks people for putting this web site together a lot of good info to read.
pam <>
wellington, NewZealand
Friday, July 13, 2001 at 06:36:04 (EDT)

Hi everyone, I am a 38 yrs old, and have been graced by CH's now for 8 years or so. My wife stumbled across this site and I was amazed at how many other sufferers there are! It is nice to find a place where you know folks will understand and I am always looking for new ways to beat the beast, as many of you are as well. I can only tell my story and hope it helps me and you. Spring 1993 I began with what seemed like sinus headaches that would wake me up early in the morning, and I found that I would have to get up immediately, or the headache would get worse. Needless to say, I had no idea the journey my life would take over the next 2 months. Today, I know that when these "sinus" headaches start, they will be very mild for about 3 days , then one early morning, the sinus headache( or shadow, phantom, ect.)turns into a CH. That first year, the doctor's were of little help (I was misdiagnosed like most of you) I was given, pain killers like naproxen sodium, codeine, etc, which provided no relief. Those first few CH's were something else, I thought I was going to die, or I had a brain tumor, and would they ever go away. After a couple weeks of suffering, I finally met an internist who had some ideas, and he mentioned Cluster Headaches as a possible cause for my pain. He said I was the perfect target for CH's ( male, 30 years old, fair complextion. smoker), so he started trying different drugs. We tried calcium blockers, pain killers, and Imitirx in the shot form. For me, the shot didn't work to well, so I got some pills to try (50mg) and It did provide some relief( from say a 6-8 to a 2-4) Sometimes it would take the pain down to a 0-1. Seems like every time it is a bit different. I also learned that Ice packs all over my head and neck would help during an epsiode. I always need to be standing up and pacing or sitting up at the very least! Showers, with the spray right on the right side of my head , was always good for a bit of relief during an episode as well. Well, since that first year, the CH's last for between 4-6 weeks, and always come in the spring or fall, never both. They came every year untill they ended fall 1998. I was CH free up untill June 2001( I enjoyed the break ;-)), now there back! One thing I noticed, early on in the cycle, I get one, sometimes 2 CH's that are untouchable, go up to 8-9 on the scale and make me throw up. Those nights are really scary and the pain is 2-4 hours long, where normally I can kill the CH in 1/2 hour with the right meds and routine. This year, the shadow headaches seem more chronic, and I am not liking it..grrrrr!! Wouldn't it be nice if someone could tell us how to prevent the suckers from coming back??? I quit smoking during this episode and hopefull that will be a positive for the future. Perhaps coffee will have to be next.... ??? I have for the last few episodes, been using a short-term, high to low dose prednisone treament, to help in providing some relief from the cycle. It seems to help, but the side effects are NO SLEEP! I can only take the steroids so long, then I depend on Imitrix and ice. Never tried O2, wonder how that would work? Right now I am in the 5th week of the cycle, and hopeful that the end is near. These headaches really do take away from my family, my career, my life. It is a battle that I must continue and I must Win. I thank you for allowing me to rant/share/talk. Best wishes to all of you in your quest for relief.
Steven P. <>
Sterling Heights, MI USA
Thursday, July 12, 2001 at 21:41:31 (EDT)

I'm a 35yr old male that has suffered from this hell for the last 15+ years. I've been misdiagnosed most of those years as having a sinus infection. I've been woken from a dead sleep only to wish that I was dead. Nothing seemed to take the pain away. I've recently started taking a drug called Sansert and seem to be having positive results. For all that suffer, I feel for you. For those that came here trying to understand the pain of their loved ones I'm afraid that you never will. I'ts a pain unlike any other so please be patient and try not to feel bad when there isn't anything that you can do. Just knowing that your near is about all that could be asked.
Martin <>
on USA
Thursday, July 12, 2001 at 15:29:07 (EDT)

I'm 21 years old and I have had a ch at least 2 times a day for 4 months nobody understands the pain that i indure every day at the same time of the day . I sometimes take any pain reliever i can get my hands on even before i get a headache. I've tried about every thing you can think of somebody please help me
stephen <>
piqua, oh USA
Thursday, July 12, 2001 at 01:26:46 (EDT)

Hi. I have had daily headaches since October of 2000. I wake up with them and they do not go away. Some days the pain is not as bad, other days it's horrible. I am not sure if they are CH, but I'm doing my research! My doctor prescribed Ametriptyline and Indomethacin, so far no luck. Going back to the neurologist. The pain moves all around in my head, it's not always in the same spot. I've been to every doctor I can think of. Losing patience! I will read all through this site, maybe they are CH. I wish everyone well and it is nice to know I'm not alone. I feel like people think I'm crazy!!
Mary-Jo <>
Boston, MA USA
Wednesday, July 11, 2001 at 17:54:54 (EDT)

Ihave had clusters for 15 + years,the only relief i have found is cafergot. Have tried many others with negative results, have only had two minor overdoses of this drug. Sad to say i would rather deal with the drug O.D than the pain have been in remission for almost 18 months praise god. I pray it continues.
Wednesday, July 11, 2001 at 04:37:53 (EDT)

Have had clusters for over 20 years. Started when I was 12. In a strange summer period right now and I want to know what people think about melatonin Many things have worked for me and then ceased to work. Feel free to ask me ?'s
Jeff Koman <>
Burlington, MA USA
Tuesday, July 10, 2001 at 18:41:24 (EDT)

Thank you for a great sight. I suffered my first cluster twelve months ago it lasted three months, and I was eventually diagnosed as a chronic cluster headache sufferer.My condition included severe pain that would start on my right temple/eye region and at its peak travel all the way down my jawbone and teeth.This episode lasting up to two hours and several each day but always twice between 10pm and 6am. Best pain relief I found prednisone but it was only a mask and I didn,t like the side effects. Best comfort I found was to spend the episode under a hot shower with the right side of my face under the water. Now Iam free but my Doctor has given me a letter to claim 100% oxygen bottle from my local hospital but I have never needed it. The clusters left in the same manner as they arrived unannounced. Please anyone who uses 100% oxygen let me know your results using it.I live now praying they will not return.
Tim Sturt <>
Sydney, nsw Australia
Tuesday, July 10, 2001 at 04:28:09 (EDT)

My husband was just told that he has cluster headaches. So I needed to find out all I could about this pain. After reading, his headaches don't sound like the ones described. His headaches last for days. They start out mild then severe. So bad he says he would rather be dead. For relief we to the after hour care. The pain pills his dr. gave him don't help. His Dr. said they are cluster headaches. The last time we went to afterhour care it took two shots to calm his head ache. He hurt so bad he threw up.
Jackie Bachtel <>
Monday, July 09, 2001 at 23:07:44 (EDT)

Monday, July 09, 2001 at 23:00:43 (EDT)

Just want to sign in if I in future can find something that can help me
Kirsten Andersen <>
9000 Aalborg, Denmark
Monday, July 09, 2001 at 14:58:00 (EDT)

I started my dance w/ the demon about ten years ago, it took three years for a Dr. to prescribe something (cafergot) to "help". But, surprise, surprise, he prescribed the wrong dosage, if the pharmysist hadn't caught the mistake I would be dead or a vegetable, so they tell me. I was sent to the head nuerologist of the hospital for an apology ("Sorry, cafergot taken in excess will melt the blood vessels in your head") and a correct prescription. Sadly after all this the cafergot hardly worked for me. I have always been a big believer in "why treat the symtoms, why not treat the problem". Cafergot is basically caffiene and ergo (ergo is what they make LSD out of- cute drug huh), so I stopped drinking caffiene. After a month of caffiene detox the demon went away. I was CH free for about three years and started a job that I had to be up in the morning for at 2am. So I started drinking the occasional cup of "joe", the occasional didn't seem to bother me so again it became a habit. More and more caffiene, coffee in the morning Pepsi in the afternoon. Then BAM the demon is back and back with a vengence, my Chs had intensified. I won't bore you with the details, you know the demon and the suicidal thoughts. The "am I going insane" thoughts even though you damn well you are totally lucid and "with-it". The pain, the tears, the snot. The fear that you'll lose your job if this happens to often at work, or you can't make it in. The heartbreak and tears of your spouse. The demon is such a wonderful playmate, I'd like to get my hands around his throat and give him a little of his own. I've now been caffiene free for two weeks, I don't know if its the oxygen I've been prescribed or the caffiene leaving my system but the CHs seem to be lessening in severity. I will keep you informed wheather this works or not. For those out there who do drink caffiene, STOP. The first couple weeks are hard but it gets better,and it could kill the beast. Good luck. Jerry Winn
Jerry Winn <>
Lakewood , Co USA
Monday, July 09, 2001 at 11:30:59 (EDT)

I am 38 year old cluster sufferer since 5years. I am a chronic sufferer. They never go away. they subsube but alway come back. I have tried medications, diet, lifestyle change biofeedback, stressfress environment,oxygen. Sometimes I just dont dont what triggers it or what stopps it I just do a combination of a variety to help it and hope for the best. I wish there was a cure or a remission my life seems on hold and on pins and needles every day I'm scared to do anything or go anywhere for fear. I was a RN working L&D and no longer doing that and miss that as well my life seems to be place off right now at this time until I can get a hold of this monster.
Ange Dylla <>
thewoodlands, tx USA
Monday, July 09, 2001 at 09:36:32 (EDT)

Hi, I have figured out that if I stay on birth control pills I don't have clusters...but if I stop.........bamm they are back........that helps if you are a woman..*s*
Candy Perkins <>
Cedarville, MI USA
Monday, July 09, 2001 at 09:06:22 (EDT)

Have had clusters since I was 16, I am now 51.They have gotten worse over the years to the point I can no longer work.
Patrick B Mooney <>
Cleveland, OH USA
Monday, July 09, 2001 at 04:27:26 (EDT)

Appreciate your work in getting this site going... fulfills real need, esp. interaction between "clusterheads." Have been free, thank God, for two years, oxygen therapy only help during episodes... but as we know, these demons have mind of their own. Best wishes to all!
Jim <>
Sunday, July 08, 2001 at 23:42:28 (EDT)

This is a updated address only, my earlier post show a different address. Thanks for a wonderful site. Dale
Dale W. Key <>
La Pine,, OR USA
Sunday, July 08, 2001 at 20:35:58 (EDT)

Hello! I am so happy to have found such an informative site on cluster headaches. I have only been diagnosed with this for a week now. If my suspicions are correct, though, I have probably had this for quite a few years (but not chronic, as it seems now). I'm a 27 year old female, I also have bipolar disorder, which makes things more fun for everyone! My moronic former psychiatrist who is also supposedly a neurologist diagnosed me, and she gave me medicine that caused horrific headaches to go along with the ones I had to begin with. That's why she is my former psychiatrist! I'm going to see my regular doctor tomorrow and see what happens there. Hopefully things will seem brighter then. I took the cluster quiz, I guess I have all of the symptoms associated with this illness. People used to tell me I was making it up, or that I was depressed. Well, yeah, psychotic pain tends to bring a person down a bit, doesn't it? My pain is always on the left side, I don't remember it ever being on the right side. I started getting headaches like this when I was 19, what I can't understand is why the doctors couldn't have diagnosed it sooner. Is this something a lot of doctors aren't familiar with? Or was I just lucky enough to get the only doctors who were clueless? I'm very curious, and excited about the prospect of finding something to help relieve the pain, even if it's minor relief. After thinking there was never anything I could do about it, it's amazing that I may have found some possibilities. I hope something works! If anyone has any suggestions on meds or anything, please, email me! Autumn
Autumn Despotis <>
Tampa , FL USA
Sunday, July 08, 2001 at 14:53:23 (EDT)

Thank you for your web site. It is late here and my husband is sleeping. I would love to wake him and show him this web site so he will know my custer headaches have nothing to do with him! But I'll wait till the morning. I have had custer headaches about every 18 months lasting for about 3 to 4 weeks for the past 7 years. When they first started and I was working outside the home they seemed to happen only on the weekends. This drove my husband nuts but he has hung in there and does what he can for me during the bouts. I am now having a my custer headaches which come once or twice a day. I can count on having a CH around 2:30 pm. When I first started this condition my Dr. told me I was experiencing migraine headaches and to take advil or tylenol, which never worked so I figured I would just have to suffer through them. I may revisit my Dr. to see if any of the new medications would work for me. But for now I will suffer through the attacks and look forward to the day they cease.
Lynn Goller <>
Kapaa, HI USA
Sunday, July 08, 2001 at 04:20:09 (EDT)

Hello all. I am 31 and a damn good looking man :) I was diagnosed with CH's about ten years ago, had all of the cat scans and all of that. Apparently there was nothing (At least exceptionally) medically wrong with me and that's what they DX'd me as. I did not have ins. so I went to a local ER. I have never been to a neurologist or anyone else for this (No money, etc. Have always seemed to be trying to take care of others). But, having read of everyone else's symptomology, I know for a fact that it is CH's. My x-wife was very instrumental in helping me to understand what was happening to me in those days. (She is an RN and a very very wonderful lady). I think that she was/is my soulmate. I sure do miss her. For reference: I have been suffering from this for ten years. Fortunately, mine are episodic (A couple of months every couple of years) so far. But when they do come on it is pure hell. I'm not sure that I could handle it if they become chronic (Apparently some of you have exp. that. Episodic to chronic. I salute you all for your bravery. I only hope that I can be as strong and brave as all of you seem to be if that happens to me). I have spent so many nights thinking of suicide and crying and screaming it's just not funny. But, as I hope that all of you can, I think I have come to some kind of terms with this damn thing. I will never give up (suicide) though I can certainly understand those who have. Don't do it though. Think of all the wonderful stuff in the world that you will be missing! And your loved ones. I mean hey, even the most chronic sufferers have some time where they are not in terrible pain. Try to just enjoy the pain free times. And ask for help! It's ok! I just found this site days(?) ago and it was one of the most moving exp. of my life! You guys will never know how much it meant to me to find others who understood what I am going through. The creator of this website will ALWAYS be in my prayers. What a real life hero! Anyway, I did have ins. for a few months not too long ago. But, then, my CH's came back with a vengeance and I began making mistakes at work. In my line of work, there is absolutely no room for even the smallest of mistakes. (I am a land surveyor and I have to work in the heat all day every day. It is strenuous, frustrating work. I have to cut line, pound hubs, jump fences, deal with boneheads, etc. There is ALWAYS a great deal of time/production pressure. It is a very stressful job, I guess. Also, I have to perform complex trig equations and other fun math stuff all of the time. Numbers, numbers and more numbers. Keep detailed notes that must be legible and make sense (They are actually legal documents once turned in and are often used in courtrooms as the only way to prove our work when there are disputes) and lots of other fun stuff. Including wading through swamps and carrying heavy stuff above our head and lots of other stuff. Did I mention the mosquitoes, wasps, gators, snakes and all of that? Anyway, as a party chief, all of the responsibilty rests on my shoulders (Been doing this since '87. You try it while having CH's :). So, I have been cycling really hard for a few weeks now and while at work I was doing some heavy duty calc's one day not too long ago and I made a mistake somewhere. Ended up costing the company about three or four hours of work. (A few hundred dollars only that time. Most of the time it could have cost them tens of thousands of dollars and perhaps legal battles as well) Doom on me, I guess. I felt that I was becoming a major liabilty to them. And from some of the things they said, they did to. I was losing respect for myself and I guess they were too. So, I quit... It is very depressing for me because I am VERY good at my job. I have what it takes to be a leader (Proven fact/not just fluffing) and the CH's just make me fall apart sometimes. I hate that more than anything else, even the pain. Now I work at a company which does not have ins. but I really like everyone there (Small company good people). Been there two weeks and have already missed two days because of CH. Scared about losing this job too. Sigh. Hmmm. On a personal note: Back when I was married, my x-wife (Cathy) was always there to help me through this crap. She is one extra fine lady. Anyway, she has medical problems and I have medical problems (In those days, I could hardly work sometimes because of the CH's, and severe back/kneck problems. She had a ten year old son and, hey you've got to take care of your kids. No matter what. So, we amicably divorced. We are still good friends. I wish that we had never divorced. I remain hopeful that we will reconcile soon. (It could happen! She and I have been talking about it lately! I am Hopeful! Though, if she decides not to, I cannot blame her. Who wants to live with a CH sufferer anyway? Sigh. If you are a CH sufferer and you have a significant other, please, please do something nice for them! Anything will be appreciated I think) Anyway, I am used to dealing with 'the beast' without meds so, what the hell. It can be survived. Though this cycle has been worse/longer (Each CH) than ever before. I have been taking Loritabs and some caffiene / apap / butabital pills recently to try and cope. They help a little bit. What helps much much more is posting and reading others posts on this site! Truth be known, I am very scared and tired and alone. So thanks everyone. You are all wonderful! I have been involved with Native American religion most all of my life and Tongoshula (God) is what keeps me going! I hope that all of you out there who do have CH's can just hang in there. Try to enjoy the things that you can. You are not alone in all of this. I will pray for all of you. Already typed too much I reckon. (Seems to be a traight of mine lately). Helps me to deal with the CH feeling. Sorry. Besides, with a richtext box you cannot hardly ever run out of room space for more text. (I program computers too, so don't try that one on me. LOL! :) For those of you that need help in coping. Check out all of the posts and don't be afraid to post yourself. I was (afraid) but everyone responded very kindly and I can only thank them for that. These people have some really good info, suggestions and sources for CH sufferers. They are wonderful too. Made me feel like I was not alone while I am suffering and that's been invaluable to me! So anyway. I tried to tell you something about myself and I hope it was not too long. You will always be in my thoughts and prayers all. Please, take care.! :) Peace and painfree happiness to all.
Michael Bragg <>
Melbourne, Fl USA
Saturday, July 07, 2001 at 14:01:32 (EDT)

CH and health care providers. I went through the "icepick in the eye" stage 4 years ago. I've had a few very brief relapses since. For the past year I tend to have milder "backround" headaches behind my left eye. Nowhere near the kind that made me not care if I lived or died. I've quite using my medical insurance for doctors visits. The PPO only allowed the neurologist to prescibe enough drugs (expensive Imitrex and various preventatives) to last a week before another office visit. Every third vist I was required to revisit my GP. Got tired of taking a half day off work once a week so now if I were to go into a cluster I go to a neurologist that's nearby and get a script for enough drugs to get me through the cluster. The last office visit and drugs were $300. I would have spent $150 copay on my medical plan but would have needed 4 visits. My time is worth more than that. Health insurance for this condition is kinda sad. Steve
Steve Towne <>
Phoenix, az USA
Saturday, July 07, 2001 at 05:43:00 (EDT)

My husband suffers from these "monsters". He has found that hot steam alternated with an ice pack helps some. His doctor has tried Prednizone in decreasing doses over a ten day period helps to break the cycle. It has worked in the past but this time (3 years since the last attack)it hasn't broken the cycle. After about three days headache-free they came back and are continuing. I can only hope that this makes sense because I haven't slept in 2 weeks except for about an hour or two a night and my proofreading skills are nonexistent. Our son is now wishing that he never has these things, even though he is starting to have "heat" headaches when he gets overheated. I am petrified that he will have to endure this nightmare when he gets older. my husband has had these for 25 years or so now. I hope someone from your site (preferably a doctor) can send some info our way to help us. Thanks for "listening".
Durwood Davis <whsdavis@thomson. net>
Thomson, Ga USA
Saturday, July 07, 2001 at 00:22:45 (EDT)

Hello all. My son is the one that suffers from CH. He's age 12, and has been having CH since he was 7 years old. Each year, they become worse and more frequent. The only relieve he finds is in Imtrex shots, which he only allow him 4 in a month, so, the rest of the time we stay at the emergency room, where the doctors their will give him more. I don't know what else to do. I've seen him scream, hit his head, throw-up, and beg me until I can give him a shot. Otherwise, they last sometimes 3 or 4 hours. Our lifes will never be the same. He goes thru so much hell, I can't keep a job, because once they hit, he has them twice a day, everyday,for about a month. Then it goes to once a day, and keeps on, last time they lasted for 4 months. As I watch, I know it only a matter of time before their back. God help him, it's awful to hear your baby say he'd rather be dead, then live with this pain and suffering. I will keep you all in my prayers. Cause god must be the only to know what kind of hell CH people live. I can't imagine.
Shawn <>
Fayetteville, WV USA
Friday, July 06, 2001 at 21:05:02 (EDT)

It absolutely breaks my heart and it pisses me off. I am not a CH sufferer, my brother is, and even after reading the postings on this sight and listening to my brother describe his pain (something he doesn't do often, and only to a select few) I still can not imagine the horrific pain all of you experience. It absolutely pisses me off that the "most painful syndrome ever diagnosed in humans" isn't more widely known and researched. Yes, I understand that it is such a small percentage of sufferers so where is the profit? The profit is your life. Shouldn't the doctors give a crap? Shouldn't the media? I feel so helpless and angry. I want to dedicate my life and time to helping you because no one should have to live with such excruciating pain. Why is it that there is relief for everything else and not CH? I know the answer but it is unacceptable to me. I am so tired of "oh, your brother has migraines huh." Yeah, right. Anyway, I beg God every single day, several times a day, to heal my brother. To please make it stop. My brother is chronic and desperate. I do not know how he continues to be the great person that he is. I do know that having cluster headaches pretty much daily for the past 4+ years has definitely begun to take a serious toll on him (of course) and his wife and child. Not fair. I researched hundreds of neurologists in the Boston area and only one listed Cluster Headaches as a clinical interest. Of course he's booked out till the end of time. That's not much support. My brother has tried just about every treatment available without much relief. He does have an appointment with the specialist in September and hopefully this neurologist will be more creative. Now, my brother's days are filled with anxiety. No kidding, that should not be a surprise to anyone that has any understanding of cluster headaches. Yes, anxiety could be a separate thing but I'd like to meet a chronic sufferer who lives with daily attacks and is not filled with anxiety. I can't imagine it. Sure, there is mental illness in our family, but there is in everyone's if you look close enough. I'm afraid my brother is cracking up. But who could blame him? I would be a complete fruit loop if I had to go to bed each night at 6:00 P.M. knowing that in a few hours someone was going to stick a burning hot poker in my eye, etc., etc.. Thank you for this web site. Reading the testimonies described here helps me better understand my brother's condition. It is a great place to refer family members and friends that think "oh, that's too bad Josh has a headache every day." I wish you all relief and pain free nights/days and promise not to sit back and do nothing. Maybe there is nothing I can do to help but it won't be for lack of trying. I hope that by visiting this site my brother realizes he is not alone. Yes, he's cracking up, but it's okay. He's not crazy; he's a chronic cluster headache sufferer who's doing the best he can. And, I love him so much.
Rebekah DuCasse <>
Pocasset, MA USA
Friday, July 06, 2001 at 15:05:38 (EDT)

I am 51 years old and have been suffering chronic headache pain since age 25. I suffer with moderate daily headache pain that clusters, several times each year, into severe episodes that can last from one to several weeks. I have tried all types of drugs (antidepressants, steroids, pain killers, anticonvulsants, etc.,etc.). The only consistent relief comes from a drug called Fiorinal but only when used around the clock. Doctors are hesitant to prescribe this drug in such large continuous dosages. The only other drugs that work produce negative side effects that prevent me from working or functioning. I have three years until retirement and feel like I will be better able to cope when that time comes. I have a small grandson that is the light of my life but I don't really have the energy to do the things with him I would like. My pain is localized over the left eye and finds its way down through my left ear and down the left side of my neck. Are there any sufferers out there with the same pattern? I would enjoy hearing from all in regards to successful remedies. Is there anyone who has found successful treatment with Fiorinal and has found a sypathetic doctor who is willing to defy convention and prescribe what is needed? Thanks to all of you for the letters posted to this site. It's good to know that I'm not alone. Fred
Fred Dunn <>
Woodstock, GA USA
Friday, July 06, 2001 at 12:09:22 (EDT)

Have danced with the beast for nearly 19 years. Most of the time every day. Seems to make no difference what kind of "lifestyle" I have (If you call this a lifestyle). Some are shadows, most are the devil. Finally on DHE compound (30mg. daily) and DHE injection. See some relief.
Terry Hart
Reidsville, NC USA
Friday, July 06, 2001 at 11:28:10 (EDT)

This website was A great find! Currently I am in a cluster cycle and have discovered that sodium benzoate will trigger a very acute CH. I have lived with CH's for over 15 years and have found that large amounts of ice cold Coca-Cola will abort an CH onset. Also, much of the info I found here mirrors my experiences quite well. Take care folks...
Gregory Bear <>
Woburn, MA USA
Friday, July 06, 2001 at 10:40:43 (EDT)

First of all I'd like to say "thax" to whoever took time to start this site. I have been a sufferer of these blasted things for 7 or so years with a couple of years skipped. I usually got them around mid September. They would start off as annoying little pains that doctors wouldn't even look at. By the end of September, BANG in the hospital, sitting in a bright waiting room, jacket over my head,squeezing my temples till I couldn't think and then have a doctor who says "Oh you have a migraine here is some o2 and some t3's. I researched as much as I could through magazines at the library so my doctor could find the right treatment for me. At first he perscribed Imetrix pill form but I usually lost it due to nausea. Then after a night in the hospital I found out about Adivan (Lorazepam). They put two tabs under my tongue,an injection of Maxerin and let me breath o2. Next thing I knew I was being woke up and sent home. In the last seven years I have spent a fortune on everything there is in Canadian pharmacies. Sancert, Imetrix pill, Imetrix nasal, another nasal (the name escapes me). All this till a couple years ago when my regular doc was on holidays and I went to see his fill in. Within my first two sentences he say "You got clusters eh?" "here" and hands me a perscription for prdnesone. I thought great more money for the drug companies. I was surprised to find out it was only six bucks. It worked. Along with the Adivan for the oncoming after a few days my attacks were cut in half and I was even missing days. By weeks end all I had to live with was the tinge. I could sleep again without the anticipation or worry. I apologize if this streched on but I have never had the chance to tell someone about this and actually have them understand. Thank-you again Tony
Tony <>
Tisdale, Saskatchewan Canada
Friday, July 06, 2001 at 08:52:45 (EDT)

I have suffered one bout of cluster headaches in my life. That bout lasted 9 months and came to an end just before I was able to see a neurologist to confirm the diagnosis. I could only describe the pain as a railway spike being driven into my eye. It came on without warning, lasted about 1/2 hour and nearly drove me crazy. Nothing helped. Even tears and screams failed to provide any relief. My husband is a doctor and we were able to have oxygen at home which he gave me through a mask. This seemed to help shorten the attacks. I have now been two and a half years without an attack and hope that I never have another one. But, every little twinge I feel in or near my eye sends me into a panic that another series of CH is on its way. All my sympathy goes to those who are still suffering and also to those loved ones who must watch so helplessly.
El;eanor <>
Victoria, BC Canada
Thursday, July 05, 2001 at 12:56:32 (EDT)

I have suffered from migraines for 9 years and CLUSTERS for the past 5 years. There hasn't been a day in the past 3 years that I haven't had a cluster of level 5 - 7 and the longest clust was 9 months straight of level 8 - 10 non-stop! I have had (I think) every traditional and non-traditional treatment there is and have also had inumerable side effects! I know that there is a day out there when I will be headache free!!!! I just don't know when. It could be today or it could be a year from now. But, I have to keep up hoping for that day. For all of you out there, don't give up hope. Life is too precious - even life with clusters or the fear of clusters. Keep a positive approach. Good luck. John Daniel (Stahl) Drabanski
John Drabanski <>
Santa Fe, NM USA
Thursday, July 05, 2001 at 12:00:27 (EDT)

I suffered from cluster headaches for over 10 years @ saw countless doctors before I found out there was actually a condition called cluster headaches! Even then it was through my own research. thank you for this web site
lucy rolfe <>
london, uk
Wednesday, July 04, 2001 at 17:41:41 (EDT)

I suffered from cluster headaches for over 10 years @ saw countless doctors before I found out there was actually a condition called cluster headaches! Even then it was through my own research. thank you for this web site
lucy rolfe <>
london, uk
Wednesday, July 04, 2001 at 17:41:38 (EDT)

I have had cluster headaches for 15 years. Sounds like I am one of the lucky ones, as after my first experience (they returned every January for 4 years almost to the day lasting 3 to 4 weeks) I have experienced several gaps of 2 to 3 years of freedom. I am in a cycle now which has so far been 5 days of 4 per day starting at 1AM and returning every 2 hours after. I am also a sleep apnea sufferer which makes the little worthwhile sleep I was getting now nonexistent. I am in the 7 - 8 range on the kip scale at this point and dread the days and weeks ahead. I have found this site extremely helpful from an informational aspect. I find some amount of comfort in the fact that others have gone through many of the same experiences as myself - misdiagnosis as sinus infection/headaches, allergy, migranes, etc. Not to make light of migranes but since I have so often been told that what I was experiencing were migranes I will convey a personal experience. About 6 months ago I experienced a migrane for the first time in my life. I had been asked so many times about the light bothering me and told the doctor that although I found the dark somehow more comforting that I did not think it in any way made my headaches worse or caused me added discomfort. The nausea that accompanies migranes, which I had never experienced, made me feel like I was making up some new disease each time I was asked. Well I had a migrane and yes those things are bothersome however putting the 2 types of pain in perspective (cluster vs migranes), I can only say that the migrane I had did not come anywhere close to what I experience with clusters. I actually had been able to sense the onset of attacks the times I have had them during daylight hours because it felt like the hair on the back of my neck was standing up just before the onset. I will admit that this cycle is very much like the first I had in that they are the evil middle of the night attacks were you awake to pain that makes you want to pluck your eye from your head. The head banging, the skull squeezing, the temple massaging, the eye pushing described on this site are all to familiar to me. I too feel pressure in the area where I have had a tooth removed and in a gland in my throat. I have found that water drinking can be helpful. I also find that yawning to the fullest possible extent for long periods will give brief respite. In some ways it is good to know you are not alone although frightening to know that these things are so often misunderstood.
David <>
Wednesday, July 04, 2001 at 08:35:33 (EDT)

I suffer from cluster headaches; going through an attack cycle now. Using library computer, no computer at home. Desperate for new information - for hope. The pain controls me. I live in constant fear of the pain. I'm about to lose another 10 weeks of my life to cluster headaches. Trying to come to terms with that; keep telling myself I'll survive the pain, like I did before. Trying to cheer up at the discovery of this website (and wishing I could access it during nighttime attacks, when I'm losing my mind from the unbearable pain...). Also depressed, because all of you are suffering the same excruciating pain - and no doctor seems to have answers for any of us. I have no health insurance. I don't have the luxury of trying one treatment after another. I'm forced to beg and humiliate myself for pain control from doctors for 10-12 weeks. I'm just trying to survive this cluster cycle. Don't give me false hope of "aborting" it; just lessen the pain to miserable, instead of excruciating. My calendar's marked with the week I look forward (I pray) to this cycle ending - and my life getting back on track. Very glad you are all here to talk to. Caren
Tuesday, July 03, 2001 at 20:36:28 (EDT)

Hi, My name is Rebecca. I am new with this CH thing. I am 23 and have never experienced anything like the pain associated with these headaches. I first got one the last week of May and thought that it was just a really bad headache. But then they kept coming. I went to one doctor that made me take x-rays of my sinus and everything came back clear. I went to another doctor who told me about CH. I had never heard of them before. By this time they were so bad that I was in tears every night, trying not to wake my daughter up. I have tried every kind of Advil, Aspirin, and Tylenol that I could get my hands on. They just don't work. Since I have just started to have these headaches and go to the doctor, I have not been prescribed a medication except for sleeping pills. I really do hope my doctor can do something to make them go away because it really scares me to read that some peoples pain gets so bad that they end the pain with suicide.
Rebecca <>
Mesquite, Tx USA
Tuesday, July 03, 2001 at 16:00:47 (EDT)

I have suffered with cluster for 25 years it gives me a break some times longest period is 2 years but only once i am sitting hear now with a attack starting got to look on the bright side
dave wyatt <>
london, uk
Tuesday, July 03, 2001 at 14:09:00 (EDT)

Hi my name is tim, i've suffered from cluster headaches for 20 years. i'v not yet met or talked to anyone with these headaches. would like to talk to other about this
tim <>
wooster, oh USA
Monday, July 02, 2001 at 20:08:28 (EDT)

hello all,i have suffered from headaches from the age of 17 and to this day i thought it was just the norm.i am now 29 with a son of 4 and a baby on the headaches have become longer and more frequent and i had started to fear the worst.i eventually went to a doctor and within minutes he had diagnosed cluster headache.i was a little scared at first but he prescibed different drugs and none seemed to work.he has now given meimigran subject injections and they seem to work when an attack sets prevent the attacks he has also prescribed a drig called amitriptyline tablets. i have been taking these for a week and i haven`t` had an attack since or had to use my injections.i don`t know if anyone else has tried this but i will keep you posted on how i go.i have just watched agood programme on discovery health all about headaches and this is what made me contact is just a shame that there is other people suffering but it does make me feel a little safer to know thar i am not alone. i will keep in touch. nigel
Nigel Nicholson <>
Bolton, uk
Monday, July 02, 2001 at 17:21:51 (EDT)

Have been diagnosed with clusters for about 15 years. In 1999 was also diagnosed with multiple sclerosis. It makes one really question life.
Ron <>
Winterset, IA USA
Monday, July 02, 2001 at 17:00:15 (EDT)

I recalled having severe headaches last year, not remembering what time of year. It started all over again this year in the spring. I finally conceded to the pain and went to a doctor after no home remedies or medication would lessen the pain. After the initial vist and pending further tests, I may be suffering from Cluster Headaches. The pain is so intense, a pain I have never felt in my life. The only comforting thing right now is knowing that I'm not the only one!!!!
Minersville, PA USA
Monday, July 02, 2001 at 13:44:28 (EDT)

Monday, July 02, 2001 at 10:03:38 (EDT)

Hello, My name is Lea, I am 28 now and have been suffering with CH for about 10 years, I just started a cycle about a week and a half ago, it hasn't gotten too bad yet, but I know what is to come. My last bout took place two years ago during a 3 month trip to Europe with my husband. They began in Turkey. I got them every day, the 100 plus degree temps did not help. We would be at an ancient site and I would collapse in pain. My husband had received a grant to do some photographic research at these sites so he had to conduct his work regardless of my condition. It was quite a sight, me writing in pain at Ephasis! Later the same day my first one hit I was at a Turkish bath and someone recognized me and asked what in the world was wrong with me. My favorite incident occurred in Athens. We were at the bottom of the hill leading up to the Acropolis and the pain leaped on and gripped my right eye. I was useless. My husband had to leave me at the bottom of the hill and run up to shoot some photos while I tried to not draw attention to myself. A few weeks later we were in England. By that time I was in full swing, the beast and I were doing the Cha Cha several times daily. We were staying with my husband's relatives all, of whom I had never met. I made a great first impression! During that same stretch of time some friends from had arranged to meet up with us in London. They flew all the way to Europe to witness some of the worst CHs I have ever experienced. At one point they had to carry me out of a restaurant, we had just ordered. LIfe has been a joy with this special condition! I sympathize with all of you and I pray that we will all find relief. I try to drink in every pain free moment but the fear is lurking. I wish you all peace and freedom from pain -Lea
Lea <>
Indianapolis, IN USA
Sunday, July 01, 2001 at 14:48:41 (EDT)

I would like to talk about my c.h. i cant take much more I need help
Stephen Leverone <>
Orlando, florida USA
Sunday, July 01, 2001 at 12:28:08 (EDT)




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