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

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What a relief! Finally people who actually understand the misery of all miseries. I have been suffering from the hell that are CHs for 17 years. Originally diagnosed when I was 14 as stress. Didn't see a doctor that had any idea what was going on until I was 21. And then He prescribed 800mg motrin. I don't need to tell any of you that the beast simply laughed it's ass off at the nerve of my doctor and me when I started to take it. Sorry to ramble, but I would like to say a few words about Kaiser Permenente. My current and soon to be former doctor thought so much of my condition that he had me taking 30 Imitrex tab a week for 4 months as well as Prednisone in a nice hefty dose. Aside from the 25 unwanted and unflattering pounds I put on during this time, I got rebound headaches, and the cluster went a very full 5 months until I raised hell and he finally sent me to a neurologist. 5 minutes with him and a script for verapimil later, the battle was over in a month.Thanks for being here and having so much information.
Brian Jackson <rfrider23@yahoo.com>
San Diego, Ca USA
Sunday, April 30, 2000 at 18:44:49 (EDT)

First suffered with CH from the age of 9. Lasted for a continually period of 6 years until I was 16. I am now 32 and have had about 10 cluster periods over the last 15 years. Typically occurring every 18 months normally in August or October. The City of London Migraine Clinic have been very helpful. As soon as I enter a cluster period I take 120mg of Verapamil three times a day. Takes a few days to get working but is very effective. Excellent site, well done
Gary Pratt <gpratt999@yahoo.co.uk>
London, England
Sunday, April 30, 2000 at 05:57:47 (EDT)

I am very glad to have found this message board. I am just back in the cluster game after a 5 year remission, but this time around I know more thanks to places like this and other info that can be found on the web. Hang tight and I'll see all of ya around!
Rebecca T <katrott@uswest.net>
Minneapolis, mn USA
Sunday, April 30, 2000 at 02:13:18 (EDT)

Thank you so much for having a useful web page up and mvoing on Clusters. I have only had them for about a year now, and I am still very new at all this. I have been searching all over to learn everything I can about these headaches and was thrilled to find your page. Thanks again, Wendy
Wendy <Msredcat@aol.com>
Albuquerque, NM USA
Sunday, April 30, 2000 at 01:43:42 (EDT)

My cluster headaches seam to be onset by a hormone problem.
SHERRY SCOTT <SScott7775@aol.com>
DEER PARK, TX USA
Sunday, April 30, 2000 at 00:28:19 (EDT)

I've been suffering from clusters for about 20 years, but only had them properly diagnosed during the last episode 2 years ago (when my fiance drove me to the E.R. to keep me from killing myself).Prior to diagnosis, I thought I was having sinus headaches from hell. Some home remedies worked in the short run...Actifed tabs, inhaling steam, even breathing Japanese wasabi vapors....but these were all aimed at the sinus involvement. Imitrex works wonders for me, however, I also have a history of coronary artery disease, so there's a definite risk there (one that I'll gladly take when the episodes reach crescendo...I've had both heart attack and clusters and would, at the time of the headache, would prefer another heart attack!) I work as a regestered nurse on a neurology unit and one of our neurologists has just put me on verapamil 240mg and O2 @ 100% as needed.I'll report back w/ results.......
Joe Corey <joeandpeg@aol.com>
Ft. Myers, Fl USA
Saturday, April 29, 2000 at 14:18:30 (EDT)

Hello,I'm Jeff,a CH sufferer since 1991. In the midst of the pain, I'm only concerned about the short term control, but when the euphoria of remission strikes, I ponder the long term affects of a majority of the prophalactic measures. my grandfather suffered for 30 years and now suffers from coronary insufficiency. he associates it with long-term caforgot usage. when I Talk to the Doc about these concerns, I get the typical "deer in the headlights" look. Any thoughts would be appreciated. Great sight!
Jeff <freetime9115@aol.com>
oregon, WI USA
Saturday, April 29, 2000 at 13:55:08 (EDT)

A few comments on things I have seen on the message board and in the medical info; Circadian rythm - I have always been very good at estimating the time of day when without a watch. Used to be able to wake on the dot without alarmclock, might still be for all I know. Do all CH's have this ability? Also I can do with little sleep for some days - during my last CH episode, I slept in half hour snatches during the night but drove the family car and had a holiday in the daytime. Just felt a little frayed at the edges, but never collapsed in all three weeks. Dance - When it first found me I used to move about a lot to get rid of pain. Then found it didn't help and tried the other way round - total immobility, sitting up straight. It doesn't hurt less, but I don't hurt myself moving; also I suspect but cannot prove that moving ADDS to the pain. Migraine - I went straight from migraine to CH. Have had Migr. all my fertile life: it tapered off at the change. When already having CH, I tried a vaginal cream with estrogens; aura came up after one day, full blown migraine the next. So if you are a fertile woman and prefer monthly migraines to occasional CH-attacks... Your choice to try it. Testosteron - I suspect my natural testosteron level has gone up or is topping my natural estrogen level. I am getting quite a mustache, some beard and my voice has dropped dramatically since the change. Any woman recognize this? Rythm - I always have my attacks during the night at two hour intervals. 21.00, 23.00, 01.00, 03.00, 05.00, 07.00. When the episode is waning or not yet full blown, I may sleep through 03.00 and 05.00 and have just some bother at 21.00. Do other non-chronic CH's have so many attacks a night? Does anyone know of the following: there is research that shows we breathe mainly through one nostril only and change over appr. every two hours. When in the grips of CH I find my nostril is NOT stuffy, but spasmodically pinched shut. Anybody can confirm this? Walk in Beauty, Annemarie
Annemarie <ave@cena.demon.nl>
The Hague/Den Haag, Netherlands
Saturday, April 29, 2000 at 07:38:32 (EDT)

A few comments on things I have seen on the message board and in the medical info - Circadian rythm - I have always been very good at estimating the time of day, when without a watch. Used to be able to wake on the dot without alarmclock, might still be for all I know. Do all CH's have this ability? Dance - When it first found me I used to move about a lot to get rid of pain. Then found it didn't help and tried the other way round - total immobility, sitting up straight. It doesn't hurt less, but I don't hurt myself moving; also I suspect but cannot prove that moving ADDS to the pain. Migraine - I went straight from migraine to CH. Have had Migr. all my fertile life: it tapered off at the change. When already having CH, I tried a vaginal cream with estrogens; aura came up after one day, full blown migraine the next. So if you are a fertile woman and prefer monthly migraines to occasional CH-attacks... Your choice. Rythm - I always have my attacks during the night at two hour intervals. 21.00, 23.00, 01.00, 03.00, 05.00, 07.00. When the attack is still weak
Annemarie <ave@cena.demon.nl>
The Hague/Den Haag, Netherlands
Saturday, April 29, 2000 at 07:29:37 (EDT)

Can remember episodes from childhood...Chronic since 1987..finally diagnosed in 1989..treated with Inderal varying from 40mg to 180mg..What a relief to find this site after being told Inderal causing Asthma attacks..I have been able to get my MD to check site and we will attempt to find a med that works and does not interfere with my breathing..the thought of the full-blown pain had me in enough of a panic that the pain came thru anyway..Increased the Inderal, now another asthma attack...such is life...thanks for receptive listening...Judy
Judy W Gill <g-ma@mindless.com>
Minot, ND USA
Friday, April 28, 2000 at 14:06:35 (EDT)

It's a little after 3:00 a.m. on day two of this, the newest beast. The very light from the computer is as if someone opened my head and poured hot nickels in my brain pan. I am a Chef, presently working in the Carolina Mountains. After working in kitchens from Guam to Key West for twenty - five years I have alot of pain in my wrists and lower legs, but these aches and pains are soothing compared to the almost daily monster that invades my brain and will literally bring my six foot, 185 lb. body to it's knees. They began in 1985 for almost no apparent reason. I was a new resident to Hawaii with a young wife and a new son. At 25 yrs. old, I was young, strong, adventurous, and athletic. And then it happened. I was sitting on the lava boulders on the coast, doing my favorite thing, fishing. Suddenly a pain behind my eye began creeping in and around my head. I took two aspirin. Within half an hour I was in tears. Another half hour I was at the hospital,white knuckles, clenched teeth, and ready to scream when the doctor arrived. He took one look at me and then my Wife said headache. A nurse with a load of demerol arrived. I don't even remember being administered the shot. Twenty minutes later I could talk, but the headache was not gone,just bothered me less. Now , fifteen years later and literally dozens of medicine trials I don't even give myself the luxury of waiting to find out how bad it's going to be. I take a strong, narcotic medicine, a cup of coffee, and say a prayer every morning when I awaken. On a good morning it's just painful. On a bad one, well, I begin to wonder if life is worth enduring this every day of my life. Today I found this site. Perhaps tomorrow a cure will be in sight. I recently discovered that both my Father and Grandmother suffered from this condition. He still does.
Bennett Frank <Surfnturf@aol.com>
Clyde, ncIt's USA
Friday, April 28, 2000 at 05:04:12 (EDT)

I have CH since about 10 they thought I was just bad or crazy so no one did any thing.When I was 13 they kicked me out of school and made me go to a srink he said I was mentenly ok but something was wrong so they did test which showed not a thing so I must just be bad. I would hide from the light. And I hated to go to sleep because it would get me. Just getting what bad kids get. I'm 37 know whats wrong but still sleep with the light on but it does not help. Sometime I can go for a years but then it come back. When I take drugs it just get worse so I have to take morenow I take none. Soon I,ll need a new job they dont know and I wont tell. I'm so tired I cant keep going like this. But now a ray of hope there are more it not just me. Can I join your group? Please
Charles <soraks@hotmail.com>
spokane, wa USA
Thursday, April 27, 2000 at 22:09:48 (EDT)

I am adding my name again to the list after the update on the site. My clusters are better. Can't quite determine if it's me getting used to the new season or the new medication. Early spring and fall are my peak time. I'm now taking verapamil and getting into more increased doses. I optomistic that this may be helping both my migraines and the clusters as I have a combination. Also been taking cdz/Amitrip for sometime which also helps. I'm glad my headaches are the seasonal variety and not an on going problem. It would be nice to go to bed and not worry if you're going to wake up with a head banger. Peace.
Dan Driewer <ddriewer@downingdisplays.com>
Port Washington, wi USA
Thursday, April 27, 2000 at 17:39:29 (EDT)

This is an update on a previous entry on April 16. I mentioned in that entry that The Sedapap I was taking was working...I was wrong..it worked for two days..This episode of CH began March 31st and by last tuesday (4-25) I was up to 7 attacks a day. I was prescribed Prednisone Wednesday morning and haven't had an attack since. I hope this will work. I can still feel the CH wanting to begin..but after a few seconds..they go away. Here's hoping that this time I will have a pill to help with CH. I know they'll never go away..but at least I'll have something to fight the CH with.
Adrian F Lopez <tiger67@mail.com>
Sarasota, FL USA
Thursday, April 27, 2000 at 15:57:49 (EDT)

I'm new to this site. My headaches have been occuring every two years for the past ten. I'd like to learn if there are any new techniques/medications.
Joel Flowers <yj4975@exmail.usma.army.mil>
West Point, NY USA
Thursday, April 27, 2000 at 13:14:46 (EDT)

I'm in remission presently,hopefully for a few years or forever, but I still keep up with this website.
Bob Windsor <windsor@gdsys.net>
DeFuniak Springs, FL USA
Thursday, April 27, 2000 at 09:07:38 (EDT)

Just popped in to say hello,Bob gets Clusters,but shhhh he is fine right now :)
Gail and Bob akaFlowers andThumper
MA USA
Thursday, April 27, 2000 at 08:32:53 (EDT)

Hi, I am Erik. Suffering now in the fourth week and the first (working) day at home. I hope to meet some friends in the neighboorhood, but it is nice to read stories from others around the world with the same stupid experiences with the misunderstanding around. Anyway. I am glad that I switched on the net to find you guys. A good cry sometimes helps too...See you.
Erik Elting <erikelting@yahoo.com>
Groningen, The Netherlands
Thursday, April 27, 2000 at 08:13:06 (EDT)

My name is Geoff. I'm 45, and have suffered 'clusterheads' since I was 21. Thank you all for being out there to share, and to listen. Mine began almost immediately after a traumatic accident which resulted in fractures of both my Zygomatic arch, and Infra Orbital bones which surround my right eye. Over the years, I have tried many drugs (as have we all) ranging from Lithium to steroids. Both these worked literally overnight. There is no need to re-describe the horrific symptoms of this nightmare affliction. One or two of my friends who were unfortunate enough to witness attacks actually thought I was going to die. So did I ! Princess Margaret Migraine Clinic in London prescribed the Lithium in 1988, and steroids in 1993. With almost instant success. Maybe you could investigate this with your own doctor. Both could be harmful. Especially the side effects of Lithium. Good luck ! I'll write more later. GEOFF.
Geoff <roshayes@hotmail.com>
Dubai, dxb uae
Wednesday, April 26, 2000 at 07:44:29 (EDT)

Thanks for the site. Always nice to know that others suffer with you. Right now I'm in the middle of a cluster - started last week, but am controlling things with Nifedipine and Prednisone. My wife found the site and now she better understands my odd behavior. Thanks again.
Robert Stroud <rhstroud@utmb.edu>
Galveston, TX USA
Tuesday, April 25, 2000 at 22:21:05 (EDT)

I have been suffering from cluster headaches since I was a freshman in High School, I am now 32 years old. This pain is the most excruciating pain I have ever felt in my life. I have given birth twice and it doesn't compare. The horrible feeling of when an episode is coming on and when you get that ice pick jabbing in your temple. It's the worst thing about my life. I have no control over it and how long it lasts. It disrupts my life severely, when I get these headaches its so hard to deal with two young children. The only times I didn't get these headaches was when I was pregnant. It was nice to find this site seeing their are other people who know the pain and understand it. It is hard to explain to my children why I cry and why I have to leave the room. I can't sit still I pace and punch myself in the head. I never heard of other people doing that until this site. I feel better knowing that I am not alone. I feel sad knowing that so many people endure the same horrible pain.
Dana <JessAlyss2@aol.com>
So. Plfd., NJ USA
Tuesday, April 25, 2000 at 14:24:07 (EDT)

I too SUFFER with these CH's. I have felt like I was a total outcast in my family and around friends due to the fact that they didnt understand the pain I was going thru. Gosh I am glad to have found this site. I have awakened again tonite feeling my head was going to absolutely explode I have taken Imtitrex this time hoping for some relief. They cant seem to find anything for me that really helps on a regular basis, the easiest thing is to give me a shot of some type narcotic and knock me out. I too go thru muttering and crying, praying my head doesnt explode and that I am not taken from my children who need me. I am so tired of this cyclic action. The only thing I know for sure is that I am not crazy...I am 42 yrs old and have been going thru this since I was 17, I have had long periods that I had no headaches and suddenly they just break loose. I have had them as long as 4 wks, to the point I couldnt even get up and walk to the bathroom alone and then have had one like I have now that is just starting I am feeling dizzy and light headed and praying it doesnt get worse. I am in a sense alone here, but I know that there are others out there. I only wish my children could understand how disabling this can be. The older ones seem to be getting a better understanding now but yrs of me missing events at school still havent been forgiven. I wish I want I pray that the doctors and scientists will one day find a true cure for these as at times I feel I am losing my mind. I know I am babbling and appologize for that. Thanks for being here to listen. I know I will survive, (thats the important thing here isnt it)
Debbie <dayork@dcr.net>
Corinth, Kentucky USA
Tuesday, April 25, 2000 at 06:08:33 (EDT)

Hi,I too am a sufferer of Cluster Headaches and am currentley going thru a cycle at present.I have only very recently joined the internet and am amazed that there are so many others out there who suffer with Cluster Headaches.Over the yrs i have tried many alternative therapies,diet coffee free etc etc all in some way i feel have lessoned the pain time.It is great that i have somewhere to go now to communicate with people like myself who also suffer this condition.IF ANYONE out there has something that they think may help me to manage my pain better i would really appreciate it.
Gary Breeze <jara@global.net.au>
Perth , W.WA AUSTRALIA
Tuesday, April 25, 2000 at 03:55:40 (EDT)

I have suffered from clusters for over 20 years. I just recently found this website. I have just been prescribed a drug called topamax, is there anyone that has experience with this drug? Ronnie
Ronnie <rowen@okvotech.org>
Wagoner, ok USA
Monday, April 24, 2000 at 19:05:06 (EDT)

I am amazed at the amount of people suffering like myself, I wonder why you never seem to meet anyone that has them or anybody that understands. This page and the Message Board etc have helped me tremendously, I was feeling so alone and also feeling as though I was going crazy. We have only had the computer for a few months so it has taken me a little time to find things and I am so glad I perciphered. I was a migraine sufferer off and on from the age of 10. Getting worse by the age of 23. Then when I had my third child at the age of 30 I was bombarded with cluster headaches I had obviously had some spells of them before but nobody knew what they were. I am 42 now and suffering more than I have ever done, I have been in this cycle since June last year. Somedays it is so bad I feel I can't go on. Thank goodness I have an excellent G.P.(Dr) who gives me alot of support and we have a very good local hospital with an excellent neurologist and also a well organised Pain Clinic. We have all suffered through the years, my children have had to live with it as well as me and my poor mother who seems to get the brunt of it. Why do we always take it out on our nearest and dearest. I am hoping and hoping for a remission soon, hopefully for all of you too.Best Wishes Moira.
Moira Robertson <Robertsonbabe@aol.com>
DUNDEE, SCOTLAND .
Monday, April 24, 2000 at 18:29:37 (EDT)

Thank you for having this website. I have been fighting this battle alone for 10 years armed only with a large bottle of ibuprofen. Sort of like taking a knife to a gun fight. It is nice to know I am not alone. I have never met anyone who had the first clue what I was going though {including doctors both in and out of the military]. I learned from your website that I should go to a neurologist allthough I understand they are no guarantee either. Again thank you for being there.
Ernest Payne <ernest_p_40165@yahoo.com>
Shepherdsville, ky USA
Monday, April 24, 2000 at 16:40:44 (EDT)

I am writing for my husband,Kenneth Lenoir, who has had cluster headaches for approximately 25 years. It is so good to know that there is a group that truly understands. He has chronic cluster headaches and has suffered like no-one knows. He has been everywhere and done everything but still has them everyday of his life. After going to the Mayo Clinic in Rochester, he was put on Indocin but warned that he could die of bleeding ulcers before he got to the hospital. He was willing to take the chance because of desperation with the pain. The indocin has helped more than anything but it continued to tear up his stomach as it consist of aspirin and he had a history of ulcers. However, over the internet, my sister found that Indocin or Indomethacin suppositories were made. The doctors nor the pharmacist were aware of this. So now he uses those and it is somewhat controlled. He never sleeps an entire night and always is awakened with a headache. One stomach specialist insisted he get off of the Indocin and he wound up in the hospital. The doctor agreed that he "HAD" to have the Indocin or indomethacin. However, the suppositories have helped. We would like to hear from someone that understands.
Kenneth Lenoir <Sis1976@aol.com>
Bakersfield, Ca USA
Monday, April 24, 2000 at 16:11:15 (EDT)

Thanks for your informative website. My doctors, including neurologists could not diagnose my condition other than to suggest trigeminal neuralgia. What really works to alleviate my condition? Nothing so far has stopped the attacks or the pain associated with them.
Kenny Schneider <KGS43@juno.com>
Cape Coral, FL USA
Monday, April 24, 2000 at 13:37:14 (EDT)

Greetings. I think I did this backwards. I posted a message before I signed the guest book. anyhow I've had these for 20 years on and off in 4 to 6 month cycles and have tried just about all legal medical means of dealing with these. I've never known anyone else who's actually had this type of headache. Feel dumb for not looking sooner.
Rick <rtd88@earthlink.net>
Long Beach, Ca USA
Sunday, April 23, 2000 at 14:04:39 (EDT)

I have had two attacks. One about two years ago. The pains came on the minute every night for two weeks. The second is just ending now after about one and a half weeks. The pains tend to come in the early hours of the morning. I have just found this web site and basically wish to know what I can do in the future. I symapthise with all fellow sufferers and think that this web site is an extremely valuable help
david Spiggle <d.spiggle@spiggle-theis.de>
frankfurt, Germany
Saturday, April 22, 2000 at 13:59:08 (EDT)

I just started having these headaches last October. They got to be 2-3 times a day come on quickly and leave the same way. I have never had such intense pain. I went to a neurologist yesterday for the 1st time and he said it sounds like cluster headaches. I wandered upon this website and was amazed how my symptons matched the cluster traits page. Now I have a name for these monsters, just no cure. But at least I don't feel alone anymore , I've never met anybody that has described what I have been going through until now.
Tonya <amin@uswest.net>
Mesa, AZ USA
Thursday, April 20, 2000 at 23:23:54 (EDT)

Hi, my name is Brian, I'm 37 years old and have been suffering from ch's since I was 19. I get 1-4 episodes a year which last anywhere from 2-8 weeks each, 1-4 hours each, usually at the change of seasons. At their peak it feels like someone blasted off the upper right corner of my head, and I just happen to be living through it. It's comforting to know I'm not alone, (even though I feel that way).My feelings go out to all ch sufferers. This is a great website. Thought I would see what I could find on the net and stumbled across it. Keep up the invaluable work. Any NEW info is always appreciated. Thanks again, Brian V.
Brian V <bmss8001@swbell.net>
Wichita, KS USA
Thursday, April 20, 2000 at 22:23:08 (EDT)

Hi everyone!I've been a CH sufferer for 11 years now.HA free for 1 1/2 years,but now they are back.I now have health coverage and have a nuero appointment next week,cant wait!Everytime I read some of your stories I cry,feeling so bad that other people have to suffer like I do.No one really understands what pain we go through,doctors think I'm nuts,boss thinks I'm "just stressed",friends cant see why I wont go to the clubs while I'm in a cycle.Well,I'm not nuts,I just have headaches that make me nuts!!!!I've been to 'walk ins",ER's,and my regular doctor,now i'm finally getting in to a nuerologist,are they at all more understanding since this is their specialty? Ice pack arent working, neither Imitrex anymore,nor any pain reliever I've tried.I've been praying to god to take the pain away or just take me away,thats the point I'm at now.Mentioning this to the doctor got me a referal to a therapist,thanks but I'm not really crazy!Ok, I'm going to stop now,I keep babling, hardly making sense.Love this web site,wish I could make my doctor read some of the stories you write,since she doesnt seem too understanding with me.I'm off to bed,not sleep,just bed,maybe I'll get a couple hours,Look like shit,feel like shit,dark circles under my eyes,but deathly afraid to fall asleep.Praying for all of you!!!
Laurie <lauriem71@hotmail.com>
cranston, RI USA
Thursday, April 20, 2000 at 22:10:09 (EDT)

I have had this condition for twenty years now. I always felt different and alienated from friends and family. The feeling of aloneness is overwhelming. After years of medical treatment, with no positive results, I have stopped all treatments and now just live with it. Nice to have this site.
Scott Salinard <sas_8@excite.com>
Whippany, NJ USA
Thursday, April 20, 2000 at 21:08:26 (EDT)

Hi,Im steve 32yo,living in Scotland,UK,a regular sort of guy in all ways exept for the terrible headaches ive had on and off for the past 7 years or so,how can you ever hope that anyone will believe or understand you when you try to explain how it feels,the ussual reply is "yes, i know i get really bad headaches too".I must be so selfish to believe that mine are worse than anyone elses. Then last week i was diagnosed with cluster headaches,i know very little about them,with not ever knowing what this awful pain was then at times things could get very scary. you cant believe what a relief it is to find you all.I really dont feel alone any more,you all must already know how wonderful it is to find this place,as it is the answer to the questions no one understands. all my love steve.
Steve Mellor <steve@mell53.fsnet.co.uk>
Aberdeen, Scotland
Thursday, April 20, 2000 at 17:13:54 (EDT)

Thank you for this site. Up until I read the personal testimonies from sufferers and their loved ones, I thought NO ONE understood my pain. I feel my sanity returning. I am grateful.
Bonnie <Chuckw@rain.org>
santa barbara, CA USA
Wednesday, April 19, 2000 at 14:41:04 (EDT)

I just found this site. It's great to have found it. I'm 44 and have been having episodic CH's since I was 16. I get them about every two years. I didn't know what they were until about 6 years ago. I had been going to the same family doctor until about six years ago and he never was able to diagnose it or help me with medication that worked. Then I changed doctors and the first time I went to him during the onset of a cycle, he matter of factly said, "sounds like you've got what are called cluster headaches..." He prescribed a Prednisone dose pack and Sansert. Bingo. I'm at about the peak of my current cycle for the third time taking this combination of medications and they're working again. During the peaks I get about 70 to 80% reduction in severity, with which I'm thrilled. I wish I was the only one in the world with this, but I know I'm not. Maybe my experiences will help someone else.
Tim Royster <troyster@cajunnet.com>
Thibodaux, LA USA
Tuesday, April 18, 2000 at 21:27:03 (EDT)

It is midnight and still no attack, what shall i do go to Bed? or wait and wait? I will give it another hour and then risk going to bed knowing that within an hour or so of falling to sleep it will happen.An hour passes and the attacks start with that menacing sensation, a tingle in the temple,teeth go numb,the bones of my temple throb with a dull pain, then the fireworks begin!!!!!I stick a rolled up piece of tissue to tickle my nostril..i sneeze and sneeze, a clear mucous streams from my nose, my eyes water and stream with tears...i drink a cup of tea holding it so tightly and breathing deeply as the pain of the rockets bounce through my temple..am i going mad? i follow this ritual until it subsides...1/2 an Hour, 2 hours or longer! It is a torture not knowing...and a miracle if it just 20 minutes?? Wait! then I think Ah! great this one only 30 minutes..BUT when will the next one be??...i climb the stairs and go to bed, my wife unaware of this attack..I put my head on the pillow and feel that sensation of light tingling in my temple..And in comparison to what i have just been through...the fire works going off multi colored!! it is heaven!! I feel happy and relieved my mind eases and i feel warm and content...i turn cuddle my wife,dream and fall to sleep. I wake up and with a sense of well being as i have just managed 3 hours sleep, Yes! 3 hours..... fantastic!!....Yeh!
Malcolm <buddymno2@bigfoot.com>
Kettering, U.K..
Tuesday, April 18, 2000 at 09:47:37 (EDT)

I have been a sufferer of cluster headaches since 1963. I had one bout then that lasted about a week or two. I did not know what it was at the time. I had another short bout in 1974, again I did not know what it was. In 1978, it really got started, I was about 37 at the time. At the time the headaches were episodic but the episodes were very close together. The clusters were finally diagnosed in 1979 and I began treatment although nothing seemed to work. In 1988, they became chronic and have been every sine. In 1988 a doctor put me on wigraine tabs and veraphapmil as a preventative. This changed the characteristics of the headaches quite a bit but they did not go away. In 1989 I discovered Oxygen - my greatest blessing! I continue to have the headaches, now mostly at night (5 or 6 timews a night) but a few minutes with the oxygen and they are gone. My headaches have changed over the years, I don't know why - maybe because of the medicine, maybe because of the oxygen, maybe because of age, but they have. Before, I had the typical cluster. A sudden onset of intense pain with hardly any warning, a continuation of that pain growing in intensity with all the other things that go along with the clusters, then all of sudden it is gone. Sometimes 15 minutes, sometimes 30, sometimes more. Of course, my head was sore as hell, and I always knew that in a hour or two it was going to happen again. However, for the past few years, I get plenty of warning. I can feel the cluster coming on well before it gets to the really intense level. It just is there, then it starts building. Sometimes I get as much as 10 minutes warning. If I get the warning, I normally can get to my oxygen tank (I never go anywhere without it nearby, usually in my car), and get it stopped before it gets to a really bad pain level. I breathe the air for a few minutes, make sure it is gone, then go about my business. So anyway that is my story. Has anyone had a similar experience?
George Petrie <kay08@aol.com>
dallas, tx USA
Monday, April 17, 2000 at 18:53:42 (EDT)

I was in remission for 17 years. I let a new doctor mess with my verapimil dosage and now they are back in spades. But I' working on getting back to remission.
Pat Paolercio <patp999@aol.com>
Boca Raton, FL USA
Monday, April 17, 2000 at 13:29:50 (EDT)

Wow I can't believe a site like this exists, my husband found you. I been suffering for eighteen years. I've been to every kind of Dr. there is and not one of them has helped me. They think I'm imagining the pain so they perscribed prozak & lithium to help me cope with the pain. Screw them all! No one in my life could ever relate to my pain exept for you guys, thank God I found you. By reading everyone's thoughts and cures, I found an answer to knock the CH out before it begins... a can of Pepsi, I can't believe it really works (only if caught in the beginning stages)within 30 seconds, I'm pain free! For those of you who have not tried the Pepsi trick, please do so the next time the CH comes to pay a visit. Thank-you all.
Andrea <the2hawks@earthlink.net>
Andover, NJ USA
Monday, April 17, 2000 at 10:21:23 (EDT)

This is a great website. I've been suffering with cluster headaches for years and I've finally found a place where other people know what it's like to have to live with clusters. Thanks!
Jeanne Daly <jdaly@snapapps.com>
Missoula, MT USA
Monday, April 17, 2000 at 01:51:28 (EDT)

Hello im glad i found this site, I thought i was the only person with this terrible problem. I know what other peaple are going through. My saving grace is oxygen when i get a headache. Works well for me.
dennis <dennis-winter@home.com>
abbotsford, bc canada
Sunday, April 16, 2000 at 20:56:49 (EDT)

I'm currently in my 3rd week of CH. I've had them on and off, since 1974. I thought I had finally beaten it, since my last episode was in 1994. But, guess what? I gave up on Doctors a long time ago. Nothing worked. So I settled into a routine of going through my 4-6 week cycle until the pain became suicidal. A trip to the ER, a mandatory CT Scan, then that wonderful shot of Demoral to knock me out. A Tylenol w/ Codeine prescription for the next few days and I was done. Same routine every year. Now they're back. I was on Tylenol w/ Codeine, till I forgot my pills on a visit to relatives. Terror!! My sister-in-law ( an R.N.)gave me her Sedapap..and it's working. At onset, I take a Sedapap and it makes the CH go away in about 10 minutes. I'm averaging 4-5 attacks a day now, so I know I'll need plenty of Sedapap for the next 3-4 weeks. A neurologist once told me, "Some people get them, and some don't". At the time, you all don'y know how much I wished HE was one of those ' some people' Hang in there all. Take care and wish you all a CH free day and night.
Adrian Lopez <tiger67@mail.com>
Sarasota, FL USA
Sunday, April 16, 2000 at 20:55:29 (EDT)

Just ended an active cluster period. I'll be headache free until Jul/Aug 2002.
Scott Menard <sreed@istal.com>
Tallahassee, FL USA
Sunday, April 16, 2000 at 19:13:48 (EDT)

I'm so glad to see this site. Normally a periodic migraine sufferer, I am now experiencing my first CHs. It began yesterday, at work, with stabbing pain in and above my right eye. I tried to take Motrin, and that did nothing. Eventually, I decided to go home. Of course, the headache went away!! I was okay for several hours, and then I got hit with another CH. I discovered quickly that smoking seriously aggravates the pain. I don't know what to do now. I hoped it wouldn't repeat, but this morning, I had another CH, thankfully mild. I don't believe going to the ER will help, because the headaches are relatively short in duration, and I don't know if I trust my doctor to help me. Unfortunately, I'm a 22-year-old female, so I don't fit the normal profile. You know, I thought ignorance about migraine was bad, but this is ridiculous. Absolutely no one I know has ever heard about cluster headaches. Thank goodness for the internet--I was able to quickly pinpoint my problem and get some helpful info. Thanks everyone! Oh, and feel free to e-mail me with suggestions!
Daniele <celty98@aol.com>
Tucker, GA USA
Sunday, April 16, 2000 at 14:01:20 (EDT)

Hello, my name is Dave and I've been suffering from CH for 11 years now. I usually have one cycle per year lasting 8 to 10 weeks, the cycle moves around but always at a season change, fall to winter one year then winter to spring the next and so on. The intensity of the pain steadily increases over the cycle until it peaks in the middle of it with around two weeks of unbearable pain, then slowly decreases until the cycle stops. I've been through the gambit on medications as I'm sure you all have, but have found that Stadol NS is a wonderful pain killer. You have to be careful with it because it can become very addictive, and you want to save it for the worst part of your cycle because your system will adapt to it. But it works wonders for me especially during the peak of my cycle. I'm excited to have found this site and know there are others out there who suffer like me (I don't mean that in a bad way...lol) it's just nice to know I'm not alone and I'm not going out of my mind. It's hard to explain to people who don't suffer from this what it is like to deal with this condition. Thanks for letting me air my two cents and I wish you all the best of luck in your battle against the beast.
Dave Owens <DOwens3089@AOL.COM>
Davenport, IA USA
Saturday, April 15, 2000 at 18:06:44 (EDT)

I am a 49 year old male. I began having what I thought were sinus headaches at night about three months ago. Ignored them until the pain became so acute in March that I was compelled to visit Urgent Care @ the local Kaiser Permanente facility. Initial dx was an ear infection, for which an antibiotic was prescribed, and I was told to take Advil for the pain. (Yeah, right!) I returned to the ER a week later with a pain more intense than any I've ever experienced in my life, and I've had kidney stones twice. They said it MAY be cluster headaches, but only switched my antibiotic and gave me Vicodin for pain, which you all know is useless. The next evening I was out having dinner with a friend and at the end of the meal I experienced a pain spike more intense than anything before. I felt faint and tried to go outside, but never made it-passed out and then vomited for about ten-fifteen minutes. The restaurant called 911 and they checked me out and offered transport to the hospital, but I told them I'd go myself. I didn't go...wish I had. I'd had a glass of wine with dinner, probably triggered the attack. (Nobody told me that ETOH was a trigger, since I hadn't been officially diagnosed with CH as yet) Certainly haven't had a drink since then, as I realized that even a small sip of wine over the last few months resulted in a nasty visit.The next weekend I had a 12 hour attack, the worst yet-went to the ER when I couldn't stand it any more. The doc decided that it must be CH, and prescribed Prednisone, Ergotamine Tartrate and Indocin. Only the ergot sometimes worked as far as alleviating an attack. Had another all-nighter on Tuesday. The following Thursday I was with practicing with my band, and an attack began with acuity so intense that I fainted again. My friends took me to the ER--I've never been so scared! After I regained concsiousness I had no control over my arms/legs-thought I'd had a stroke. (Only consolation was that I thought if I'm goin' out I was playing the piano when it happened!) They checked me out and said I was OK. As I was leaving, another attack began, so they gave me oxygen, and within ten minutes the attack abated. I went home, and was awakened at 3 A.M. by another--back to the ER, more oxygen and a shot of DHE, and I spent the night there. Had a CT scan in the A.M. which was negative. The prednisone hasn't broken the cycle, and the ergotamine has nasty side effects. Had a neuro consult yesterday-asked for an oxygen tank at home, which will be delivered next week. He took me off of the ergotomine and prescribed Imitrex inhaler and something called Neurontin as a possible prophylaxis. I looked this up and it seems to be some sort of seizure medication. Hope it works...As you all know, prognosis is not encouraging for those with CH, so just have to figure out how best to manage the pain and be realistic about a "cure"-none seems to exist, not surprising since no R&D $ are committed to CH studies as the # of sufferers is so small as to not be profitable for the drug manufacturers. The survey on this site seems to confirm that very little works on CH beyond inconsistent pain management. Since it has only been three months, I do not yet know if these are episodic or chronic. Just have to wait it out. I am gratified to have found this site-a wealth of information and empathy seems to abide here. I apologize for the rather long post, but I wanted to get this out. CH has taken over my life temporarily and this seems a good outlet. Been some other very negative financial consequences which I now attribute to CH as well. Thanks for being here... Ira Kart Ikart@pacbell.net Redwood City, CA 94065
Ira Kart <Ikart@pacbell.net>
Redwood City, CA USA
Saturday, April 15, 2000 at 13:10:06 (EDT)

Well..such a relief to know we are not alone. My husband has suffered with clusters for 26 years. They came every 3 years every March like clockwork. 5 years ago he had been having them day and night for 3 months and I had just opened up an herb and vitamin shop built onto my home and a lady came in to leave some brochures about her business. She was a massage therapist and I had heard her name from other customers who had told me she was a real healer...you know how you can let these things slide on through your brain without giving it much thought...so I asked her if she had ever heard of clusters and she had. She told me that if I could get Larry to her while this was going on with him that she believed that she could help him. He was upstairs at the time dying with a headache and I went and told him what she had said and he agreed to go so I loaded him up and took him to her and left him. 2 hours later she called for me to come and pick him up. I had to help him off of the table and into the car and into the house. He told me that at first he thought he had wasted his money but then he went to sleep and woke up with the feeling of the headache coming and told her. At the time she was doing reflexology on his feet and she moved around to his head and did what we found out later was craniosacral therapy. She moved the pain from his left temporal lobe were it had always been to the top center of his head. He remained pain free that night ( a miracle) and the next morning had the worst one he had ever had and it was still in the top of his head. He continued to see her for another week and remained pain free for 5 years. She also suggested I start feeding him my herbs and vitamins. Feverfew I had tried but it did not work for him. Nothing worked. We tried every drug and saw every Dr. in the country. I guess we were blessed that they only came every 3 years but they were each time worse it seemed and longer and we raised our children through this bouts and though he was for sure the one in pain we all suffered. The 1st of march this year they started again. The therapist had broken her leg in Jan. in 2 places and could not work on him at first. For 40 days and 40 nights we lived in a nightmare. The last time I had him to the Emergency room his blood pressure was 200/140. They thought he was stroking out and so did he and I. We did not sleep and barely ate for all of these days and nights. Finally after much begging from him and I the therapist agreed to start out 30 minutes at a time on him. 3 sessions later he is improving and was pain free yesterday and last night for the first days since Mar. 1. He is a drinker-though moderate- none during this bout- and a smoker-smokes more-I have a problem with this-and he is one of the most stressed out human beings on the planet. I learnt at an early age not to worry about shit! He worries about everything. Even things that have not happened. And I am a firm believer that stress brought back this episode. His father died with Lung cancer in Jan. and our son has been sick since Nov. and we're trying to sell our company and he let it all get to him. I realize that there are stresses you have no control over. Also we sell home heating oil and he never had a cluster until after he started hauling the oil. The therapist says she can smell it seeping out of his pores when she works on him. Thanks to everyone for listening and for being here and especially the maintainers of this site. Sincerely, Adele Forbes
Adele Forbes <Motherlovin@boone.net>
Linville, NC USA
Saturday, April 15, 2000 at 09:58:19 (EDT)

Hi my name is Jill and I have suffered from CH since I was about 18 years old. I just got over another lovely time with these CH's. This time it lasted 6wks. All the other times they only lasted 2wks. I get them about once a year to every two years. Nothing ever seemed to help until this last time when my doctor put me on a nose spray called Stadol NS. It is the greatest thing. It definitely relieved my headaches and they didnt peak like they used too. Of course after 6wks of putting up with these CH's I was about ready to loose it. I logged onto this website last month hoping to write this and in the middle of searching I got the wonderful beast, so I had to quit. Also this time is the first time that I got sick to my stomach from these headaches. I hope that this medicine that I have mentioned will help some CH sufferers out there. And hang in there we are all in this boat together. Sincerely Jill Tarbox
Jill Tarbox
Raymond, OH USA
Friday, April 14, 2000 at 15:07:49 (EDT)

First, I thank the inventors and maintainers of this site for being here. It is 2 weeks since I was diagnosed, and I'm still in that phase, having had my first Neurolgical exam today. On a whim I searched Lycos tonight and tried this page first. Needless to say, I was stunned at what I found. I might add I had never even heard of this ailment until 2 weeks ago today. I am 49 years old, white, male, software professional. I believe myself to be episodic, right side, for in the last 2 weeks I am down to 1 bout per week from 1 per day from about Jan 1 through about March 31. It started with a constant, dull yet sharp pain on the top of my head in August 1999. That persisted until extremes in my gum area started steering us toward a root canal consult late January 2000. Not finding anything concrete, I was told by the Endodontist to go home and wait for the pain to get worse so he could pin point the problem tooth. Mid March my wife convinced me to see my physician. Bouts started around 11pm before retiring, lasting anywhere from 20 minutes to 4 hours. I had 4 all-nighters in March. In med exam 2 weeks ago, the doc went and got her text book - we read together - the fit was stunning. She prescribed Migranal. It has worked pretty good to cease the 3 bouts of the last 2 weeks. I do experience shadows, as you folks call it, before onset - but they are short. I also experience a constant feeling of injury in the areas throughout the day. That is something I haven't seen testimony of yet, but I'm just getting started with this website. Thanks to all for being there, and bless you all. It will be of great aid as I begin this experience which as of this date is still new & frightening.
Ed Bottum <ebottum@pobox.com>
Raleigh, NC USA
Thursday, April 13, 2000 at 23:58:49 (EDT)

I am in the midst of a third cycle of cluster headaches. It was 15 months ago that the last cluster---about three weeks duration, occurred. The difference this time is that I have sometimes had two a day, and a few is daylight hours.
Neal A. Hawthorn <nah6030@aol.com>
Longview, TX USA
Thursday, April 13, 2000 at 18:04:52 (EDT)

I'm a 42 year old male and have suffered from episodic clusters since I was 20. My attacks occur every two years on average and last about a month with a cluster every other day of 2 hours duration. I conform to the "typical" cluster type being tall, slim and with rugged features. Although the pain can be severe, I usually resist taking drugs and rely on an ice-pack on my forehead which does help a good deal. The only drugs I have used are Ergot preparations which if taken promptly do abort an attack. I have also managed to abort an attack by engaging in violent physical exercize such as running as fast as possible for as long as possible. This works particularly well when the attack occurs on waking in the morning. This is a great site and its good to know I'm not alone with what can be a very lonely illness.
Patrick Wallen <patrick.wallen@virgin.net>
Harrogate, England
Thursday, April 13, 2000 at 16:07:48 (EDT)

Dear cluster headache sufferers. My husband had a similar story. He was diagnosed with "classic" cluster headaches in early 1999. At the end of '98, he began having blinding one-sided headaches every night at the same time. The first dx was trigeminal neuralgia. Then off to a specialist who said it was cluster. Up until this time, and through 27 years of marriage to me, my husband was never sick a day. Then he was crushed by these nightly headaches, and worried that it would interfere with his job. In the spring of '99, I was diagnosed with chronic, long-term Lyme disease. Unlike my husband, I had a myriad of symptoms (labeled "fibromyalgia") and was in chronic arthritic pain. Eventually, after oxygen, more medications than we could count, prednisone, etc., my husband asked my infectious disease doctor if the clusters could be the result of long-term Lyme. (He had had a rash and tick bite in 1988). The doctor was skeptical at first, but after reviewing his MRI, put him on a trial of 500mgs of Tetracycline 3x/day. In six weeks the headaches disappeared and have never come back (it is now 5 months since he has been clear of headaches). His "cluster" lasted 15 monts nonstop, then disappeared after abx. My husband feels better than ever, saying he was probably slightly depressed for 10 years but didn't know it. I hope this information helps. If you decide to investigate the possibility of Lyme or other infectious disease (mycoplasma, stealth viruses, etc.), be aware that LD is a complicated, and highly political diagnosis. There are doctors losing their licenses for "overdiagnosing and overtreating" Lyme. For me, after 15 years of suffering chronic pain, a full year of abx treatment has brought me back to functioning at about 70 percent. Good luck to you all.
Janet Cooper <duke@jamestownri.com>
Jamestown, RI USA
Thursday, April 13, 2000 at 08:09:05 (EDT)

Greetings to all. I'm a 58 year old male and my cluster headaches started last summer. Since then my life has been heading in a downward spiral. I work in an industry where there's no such thing as sick leave and if you're sick, you don't get called back to work. If you don't work you don't get your health insurance hours, and without health insurance, there's no Imitrex and no doctors. My biggest fear is that I'll be found out for my ailment and be kicked out of my job. More than once, I've worked straight through an attack, operating heavy equipment, and working at hazardous heights. Finding this website has been like a drowning man finding a lifeboat in the middle of the ocean. Now I have a clear picture of cluster headaches, and hope that I can beat them. I've resolved to go back to my neurologist, and try every medication and regimen there is. Thanks to all who had the initiative and good will to put this site together. Michael
Michael Everett <ia728@primenet.com>
Santa Monica, CA USA
Wednesday, April 12, 2000 at 04:22:23 (EDT)

This site is great! Today is week 3 for this bout. It seems the pain has become more severe as the years progress. The oxygen appears to help somewhat. I haven't had to miss any work thus far. I am glad there are other people like me, that can relate to this misery.
Jim Mikowski <Jmikowski@aol.com>
erie, pa USA
Tuesday, April 11, 2000 at 20:11:20 (EDT)

Hi, I am the wife of a sufferer and we are both very happy to find this site. He has suffered with clusters for 20 years now and is currently in a cycle that started mid February. The past 2-3 weeks have been the worst he has ever experienced. He has an appointment to see a neurologist at the end of the month - we will take some printed information from this site to the doctor. We just returned from a vacation to Mexico - planned before we knew he would be in a cycle. Has anyone ever flown while in a cycle? The flight home was pure torture for him. Four and a half hours belted into a seat on a full airplane with a full blown cluster happening the whole flight. Not sure if change in air pressure precipitated the attack or not, but he will definitely not fly again while in a cycle. Have not found any medication yet that really works - tried lots. Did get a shot of DHE at ER the other night, and it stopped the headache - but can only be adminstered by doctor? I am hoping and praying that this cycle is almost over - he doesn't want to leave the house for fear of an attack - it really affects the whole family and I wish there was something I could do to help him. This site will help a lot - will get him to write in when he feels able. Thanks
Bonnie <BWoods@mail.canfor.ca>
Prince George, BC Canada
Tuesday, April 11, 2000 at 16:39:53 (EDT)

I have been suffering from cluster headaches for a few years now. I have tried many medications and a neurologist has given me an imitrex injection kit. I was wondering for anyone who has tried this, "are there any side effects?" I also have nasal spray imitrex. Any side effects with this too? I am not too keen on injecting myself with anything. Thanks.
Scott <srs94003@uconnvm.uconn.edu>
Vernon, CT USA
Tuesday, April 11, 2000 at 14:26:45 (EDT)

Hi, I am writing on behalf of my 3 1/2 year old son,Simon. Since mid October he has had 2-3 "headaches" a day. His symptoms match exactly with the traits of the chronoic sufferer. He cries out, pants, thrashes, is awoken in the middle of the night, in pain, always behind the left eye, He can be fine one minute and in pain the next and then finr in 30 mins., about. His family Dr. agrees with me that it sounds like cluster headaches, but she has not heard of it in 3 year olds. He is scheduled to see a pediatric neurologist, but the earliest she has an open appointment is May 19th. I try not to give him Tylenol all the time. Maybe 4 doses a week. Has anyone had any luck with a homeopathic remedy for this? I love my little sweet boy and feel so helpless. I get occasional migraines. the kind that last a day or so. Not cluster. Hereditary? He has gone the RX antihistamine, bottle of Robitussin, antibiotic route as you stated. This is not a sinus infection. I am glad your here. Anyone know of child sufferers. Thanks , Sherril
Sherril Berry-Wysong <starn321@dmcom.net>
Delhi, NY USA
Monday, April 10, 2000 at 21:20:56 (EDT)

Hello! I am very sorry that I too am a sufferer of this energy, and painful infliction. I have been suffering with "clusters" for 12 years now, and I'm suprised I'm still here. My wife has hid the rifle I bought for hunting, and has gotten me ice packs, and has been there when I need her... Mainly I am alone......Many night on the couch, clutching, crying, and dreaming of sleep that will come in 5 hours or so. I have read many of these statements, and I really feel like part of the "Family". This time I am at 4+ weeks of these and am very drained... Work sent me home (I do cardiovascular testing) I cannot seem to focus (Go figure). I pray these will end soon.. or "Lord take me away".
Timothy Klemm <timothyklm@aol.com>
Harrison, Oh USA
Monday, April 10, 2000 at 12:59:22 (EDT)

i am a suffer from the cluster going on 7 years just came back from the er last night. the pain is so unbearable. the right side of my eye waters and the back of my right eye is pounding and acheing so bad. my bout is going on 2 months hope i am about done. sansert was working but i think i am building a immunity to it. trying prednisone but gives me such headach. and i feel like i am going to pass out taking it. i want to try oxygen!!! i am so thank full for this sight. this pain is so bad i would not wish it on my worst eneimes!!! can any one tell me how the oxygen works and when to take it? lets keep battling!
art <troy8kan@aol.com>
kansas city, mo USA
Sunday, April 09, 2000 at 21:32:59 (EDT)

Thanks It's nice to know that I am not alone. Great site
Rick E. <raecorp@aol.com>
Phila, Pa USA
Sunday, April 09, 2000 at 21:31:59 (EDT)

Hi I'm a 63 year old male who's had CH for 37 years & all the doctors Ive seen have now Idea of what's going on, so I gave up on them. finding this sight has enlightend me more in ten minutes, than the last 30 years of seeking med.help. Thanks to all for shareing in our fight with this beast.
Biff LeFors <blefors aol.com>
oregon city, or USA
Sunday, April 09, 2000 at 13:56:20 (EDT)

hellow my name is edwin, iam suffering from cluster headaches from the age of twenty-five years of age, my present age is forty-four years. this pain is unbearable when ever it comes i would realy like to get rid of this unbearable pain.thanks for letting me know that i am not alone, and i hope that all the people that is suffering with cluster headaches will get a cure for it.
Edwin Gilkes <egilkes@yahoo.com>
Port of Spain, Trinidad
Sunday, April 09, 2000 at 11:25:48 (EDT)

Hello - I am not a clusterhead, but my dad is. Last year at this time he started having them. It is now starting again and with a vengence. I started to research online and found this site. I am so happy to have found it. I have printed out all the info. so my mom could read it and understand this monster better. They are going to get in touch with his neuoro dr. and change his meds. He was to the ER the other night. I feel so helpless, and so does mom. Thanks for listening and I pray that all of you are pain free soon. Love to all, Lynda
Lynda DiSantis <Lynda2656@aol.com>
Bala Cynwyd, PA USA
Sunday, April 09, 2000 at 10:47:18 (EDT)

Hi, I,m 36 years old, and been getting cluster headaches for 18 years. They always come at the same time every year,which is around June. I get them for about 2 months and always at night. Sometimes I get them 3 to 4 times a night.I've taken many medications from a nuerologist, including, Prednisone, Imitrex, Amitriptyline,Oxygen,and a doctor administered shot I had to carry around with me. They last about 45 mintutes to an hour, but usually I am affraid to go back to sleep for quite a while for fear of getting another. I have never met any one else that suffers from super bad headaches like clusters. The pain I get is always on the right side of my head behind the eye and around the temple and ear. I have not yet found a relief for the pain once a headache has set in. I have to stay awake with my eyes open in a lighted room or the headache is worse. The Amitriptyline(100mg) helps to prevent somewhat the occurances as compared to before I was on them. I am at my husbands work computer, but will soon get on the internet at home, and be a regular at the site here. It was great to find this site and learn about how others are dealing with CH's. Hopefully we will all find a permanent solution to CH's. Sincerely Lisa J.
Lisa J <robert_johnson@memry.com>
wingdale, ny USA
Saturday, April 08, 2000 at 17:29:20 (EDT)

Their back,I was doing well thinking maybe,just maybe the clusters were gone for good but no,my luck doesnt work that way.I dont know if Im happy or sad to have you all to talk to.Its a shame we suffer in silence but almost a comfort to know we suffer together.
John <pearl85331@aol.com>
So. Meriden, Ct USA
Saturday, April 08, 2000 at 08:25:28 (EDT)

had clusters for 21 years now , first periodicly than chronical ( 5years ) now periodicly again . tryed every possible treatment there is , have accepted my fate .
eric-jan harmsen <eric-jan@teatropereyra.jazztel.es>
ibiza, bal spain
Friday, April 07, 2000 at 12:49:44 (EDT)

I just started getting cluster headaches four years ago. I have been to many different doctors but still no cure. The medicines make me sick. Im 22 years old and I take medicine like Im 70.
Jowanda <vogue9@bellatlantic.net>
petersburg, va USA
Friday, April 07, 2000 at 12:39:37 (EDT)

I have been treated for Tic Douloureux for three years. I have had a reoccurrence of pain. Today the neurosurgeon says I have cluster headaches, not Tic.
Willie Mathes <cwmathes@cs.com>
Louisville, KY USA
Thursday, April 06, 2000 at 22:33:01 (EDT)

I am a 35 yr old sufferer of severe headaches that until last nite i didn't even know had a name! They started when i was about 24, just after the birth of my daughter, and have been increasing in intensity and frequency since then. At times, i just sit and cry and hit my haed with my fists, because i don't know what else to do. I used to tell my doctor about them and he said they came from having kids, take some asprin and have a nap. Nice try, but who can sleep through these things? and asprin is like water. Usually, i just want to be left alone, because everyone aaround me looks at me like I've just grown a third eye... I mean, how bad can a headache be, right? They have no idea. They don't understand why i just rock , or want to be alone or cry, or yell and scream. They look at me like i'm nuts, and sometimes I think I am. I lost my job about a year ago, so we have no health insurance, so seeing a dr. is out of the question. i just try whatever is new in the way of home remedies, and if they work, even a little, i add them to the line-up of things to try or do when it starts again. I have never noticed a conection to food or time of day or year, and there sometimes is a connection to my monthly cycle, but not always, and i don't coount on it. If I can go a whole week or two withoout them, I count myself lucky. If I can get hold of some strong pain meds that can knock me out, I count myself lucky,then,too. Other than that, I just count the minutes until the next one goes away. I sound dreary and depressing, right? Well, that's cuz since I started writing this, my headache has decided to come back. Time to go...I think this one's going to be a pacer.
Wendy <wjf42q@aol.com>
Milwaukee, WI USA
Thursday, April 06, 2000 at 19:44:51 (EDT)

I am a 45 yr. old male and I have been suffering from cluster headaches for 6+ years. I have the chronic form. I did have a period of relief for about 6 months where i had maybe 1 headache a week, i was on lithium and cataflam. Now this doesn't seem to be working. I am in the process of trying other medications for pain and prevention. I always hated taking medication!!! Now look at me! Was always so health, never had to visit a Dr.for other than flu, etc. I have seen so many Drs in the past 6+ years that I have lost count! Took 4 years plus I don't know how many drs. to make a diagnosis. And tests you name it I had it done. Had so much medical expences over and above our insurance would pay, it took us years to pay them off. And what really makes me furious, I payed them for not even help- ing me. Paid for nothing! The headaches now are so bad I have a hard time trying to work. I'm a mailman, and with these headaches I really have a hard time just trying to walk when all I want to do is just hide till the pain is gone! The pain is so bad I am in tears its unbearable. I get 4-6 headaches a day. My family ( wife and 2 beautiful daughters) try to understand what I am feeling. Its so hard to try and tell them. My wife is constantly trying to find me some kind of relief from this pain. Anything new we talk about it. I sometimes get so miserable and I don't really mean to. I love them so much! Well, thanks for listening and thank you for this site! Now I know I'm not alone!
frank demcher <demcher@pottsville.infi.net>
tremont, pa USA
Thursday, April 06, 2000 at 13:07:51 (EDT)

I have suffered 15 years from clusters.been to many doctors even a dentist and had three root conals i didn't need because i could not stand the pain.it felt like someone jabbing needlenose pliars in my left side of my temple and twisting the pain was so intense i'd start sweating.all i could do is hold pressure on that side of my head and the back of my neck until that devil would release.after a bad attack i was very drained.i am now 40 years old.
ROBBIE LEONARD <BOBLEON>
WHITE PLAINS, MD USA
Thursday, April 06, 2000 at 09:19:17 (EDT)

I suffered many years in my 20's and a year in my 30's and never knew what it was. My daughter started just recently and I recognized the look on her face from the pain. I never knew it had a name, I never knew others had it. I am going to do anything I can to help her not go through all I went through. I have one question. I have not had any in over ten years, and only a couple then. Prior that I did not have any for about ten years. Is this usual, can I expect a return?
Bob Baker <rpbakeriii>
Grand Prairie, TX USA
Thursday, April 06, 2000 at 04:44:07 (EDT)

Diagnosed at 17 - Episodic I'm 40 now, and have just "gone chronic" within the last year. It IS already (just went on-line recently) helping me know that I don't have to be alone anymore!! First time on site.
Jim <CSR0430@aol.com>
Columbia, Pa USA
Thursday, April 06, 2000 at 04:22:24 (EDT)

I found this site while looking for cluster migraine info for an online friend. I have suffered from clusters most of my life. They got decidedly worse after the birth of my first child. After being on meds for years (more meds than I care to think about), my doc took a leap... he suggested an enzyme allergy. This enzyme is in processed chocolate, cheese, unboiled potatoes, maple cured meats and red liquor. I avoid those foods now. Later it was found that I also have abnormally high seratonin levels. The enzyme is so much like seratonin that it acts like seratonin. I am now on Paxil to control the levels and I still avoid the foods that carry the enzyme as much as possible. B6 also seems to help (a hint my grandma gave me) I have been cluster free for about 6 months now :-) I think this site is great! It's hard to find people who understand that you aren't being immature when you clutch your head and scream!!!!
Heather <SWTnSMPL>
USA
Thursday, April 06, 2000 at 03:00:52 (EDT)

Greetings, Ive tried to contact everyone here from the Houston area for a possible "social" . In case I missed some people I'm posting here also. I am trying to arrange a meeting of CH sufferes in the Houston area and have recieved 6 replies so far expressing an interest. Feel free to email me if you would like to attend. I thought it would be nice to get to know some of us before the Las Vegas convention (whether youre going or not). Thanks. Joe Cavazos jose.cavazos@pdq.net
Joe Cavazos <jose.cavazos@pdq.net>
Houston, Tx. USA
Thursday, April 06, 2000 at 00:37:13 (EDT)

why do doctors constantly try and tell me that i get "migraine" headaches? why do they give me "migraine" medicine? why, when i tell them that this medicine is as worthless as the gum on my shoe (imitrex, zomig) do they continue to say "i think it will work this time." I know it is sad to say this, but i don't trust doctors anymore. I haven't been to one doctor in my life who actually believed me when i tried to explain how much it hurts. i give them 3 minutes of "partying" with the beast, and then maybe they won't look at me like i'm a fool, or give me freaking tylenol when i hit the emergency room at 2 am.
Michael Dupree <wulfpac@usa.net>
Baton Rouge, LA USA
Wednesday, April 05, 2000 at 17:31:43 (EDT)

why do doctors constantly try and tell me that i get
Michael Dupree <wulfpac@usa.net>
Baton Rouge, LA USA
Wednesday, April 05, 2000 at 17:31:02 (EDT)

Hello my clusterbuster friends. I have been dealing with the monster for twenty years. As far as the medicinal world is concerned, good luck. Tried everything from A to Z. We are on our own. I have had CH surfing big waves in Hawaii, where I would drift down the beach for two hours, sking the steeps in lake tahoe, romantic nights with my wife, dealing craps in a big casino in lake tahoe, and of course the dreaded wake up call in the middle of your sleep. Very imbarrasing situations,CH should be a private thing, but the timing of the attacks are somtimes public, and that is when you feel very alone. Now we have the internet, right on. This is a good thing. We all realize what keeps us going is the off season, knowing there shall be a lull. I have a remedy that shall work on most of you. If you should try it I want to here from you,remember I have tried eveything and this is what works for me. Pepsi. Dont laugh or be judgmental until you have tried it. This is what you do. You only have a ten minute open window or it wont work. Soon as you feel our friendly little ice pick working its way through the back of the neck its time to bust out the pepsi, drink it fast, two cans within ten minutes. This sounds to simple, I know, but all the neurologists that I have seen the first ten years of my attacks can kiss my ass.I know this sounds crazy, but what have you got to loose. If the CH is your vampire, then Pepsi is not only your crucifix, but your wooden stake, If your CH is your werewolf, then Pepsi is your silver bullet. Dont give up on the first can, force the second one down. I want to hear from those who have the open mind to try it. E mail me the fearless vampire killer. Chris J
chris jacobsen <surferoflife_2000@yahoo.com>
lake tahoe, nv USA
Wednesday, April 05, 2000 at 14:40:04 (EDT)

I have chronic cluster headaches and have not had a remission in 2 years. I have headaches everyday and my only refief is a combination of Vicodin and Stadol which only dulls the pain. It never goes away completely! Any suggestions???
Michael Akers <staceyg32@yahoo.com>
Hampton, VA USA
Wednesday, April 05, 2000 at 13:08:56 (EDT)

Zomig is better than Imitrex in my opinion. I have gotten much faster relief with this medicine combined with oxygen. I've got a huge headache from the cost of it, though. Gene.
gene covington <ecovington@mmcable.com>
Oklahoma City, OK USA
Tuesday, April 04, 2000 at 23:45:17 (EDT)

I have had cluster headaches for the past 10 years. Usually come in March or April and last 6 - 8 weeks. I do not get every year, last attack was spring of 1997, until now. It started with the burning sensation in my left eye. Some mild headaches treatable with strong over the counter pain medicine. Today I finally called my doctor so oxygen. That is the only thing that help to relieve my pain with the past occurance. I thought the last time I had these I would rather die than to go through with it again. But here it is again. Can I make it? I hope so but I am scared. Very scared.
Ernie Thompson <enetopoe@aol.com>
Landisville, Pa USA
Tuesday, April 04, 2000 at 15:12:31 (EDT)

I'm an eight year sufferer. I am currently in the middle of a cycle. when will this ever end?
Michael Dupree <wulfpac@usa.net>
Baton Rouge, LA USA
Tuesday, April 04, 2000 at 14:40:39 (EDT)

I have written in before, but I find one of the best treatments throughout an episode is talk about it to those who suffer like me. People close to me know what I feel when I get these damn things and that always makes me feel some relief. My wife is always so patient but I know she worries much about me. The saddest part I feel for her is that this disorder could be with us for the rest of my life. I always think I'll get over this but I think that is wishful thinking. I believe that my lifestyle is normal and I try to live as normal a life as possible. But in reality, how normal is life when you live in constant fear? Recently, I joined the Navy Reserve but I have had to submit to them info on this and I await to be seen by a Navy doctor to hopefully be excused from my obligation. When I joined I was in a "remission" period of about six months, but about a week before my first drill, I had an attack. Since then I have seen my PCP as well as a neurologist and I have been advised by them that I should scale down my life activities for fear of these attacks. I am scared of what could happen in the event I get one of these during my drill periods. I would be interested to know if there are any service members out there who have had to leave the military because of this condition, or if anyone may have advice as to how the navy may view this situation. My whole life I have wanted to serve my country in the Navy, but I am fearful of what could happen in the performance of my duties should I get an attack. The truth is that I know I will get these from time to time. And it dosen't even stop there, but in my normal civilian life I am not exempt from these. During my normal episodic period I am afraid to go anywhere -- that is a hell of a way to live. So my friends, thank you for the opportunity to relay my story as so many have done before me. Now, I'll take my 180mg's of Calan and hope to have a good nite's rest. -Mike
Mike Brown <joefred70@aol.com>
Schenectady, NY USA
Monday, April 03, 2000 at 22:40:58 (EDT)

I am so glad this site exists and I am not alone in this world of suffering. I have been in a cycle for the last 2 months with what seems no end in sight. My doctor has prescribed with the following for this cycle: Imitrex, Lithium, Propranolol and Prednisone to name a few. The one I seem to get the relief from is the Imitrex. I often feel like a giny pig with all the medications that my body has had to endure. I only can hope that they will find a cure in the near future. I think it's wonderful to have this site to go to for support. I have to thank my lovely wife for finding it for Us. Thank you
Timothy Swanson <t-jswanson@worldnet.att.net>
East Meadow , NY USA
Monday, April 03, 2000 at 22:09:33 (EDT)

Just thought I would say hello and am glad to Know we are not alone, even though we thought we thik we were. Just like to say take it easy, they will find a cure someday hope I live to see it. I do think as time goes by that they get farther in between, and are shorter in duration. Thanks for letting me talk Ray Mc Dowell (sonny)
Ray Mc Dowell <sonnymcdowell@yahoo.com>
Clifton, TX USA
Monday, April 03, 2000 at 20:09:27 (EDT)

Must say one last thing. Ive taken pain killers to ease the pain, and they help. Now i take Amerge(naratriptan HCL) no side effects, nothing. Take it at the onset(aura) and i felt100% no lie. Hope this helps someone....any thoughts please post... MW
mike <mewbomb@juno.com>
USA
Monday, April 03, 2000 at 14:03:28 (EDT)

Great Site! Ive had ch's for about....15 years now. They seems to vary from year to year, mostly during spring. Its very strange because i can never tell what causes them..... ALthough...i have found that when i am completely stressed it can happen more likely. They last about 3 hours and i am completely useles.. Throwing up and writhing in pain. I saw a post here...i have to say i agree with them. How people say, "I know how you feel" i had a headache yesterday". Yeah...OK! No one knows the pain we feel.... Do any of you vomit at all....not to sound gross, but it makes me feel much better. Thanks again for letting me post.
Mike <mewbomb@juno.com>
NJ USA
Monday, April 03, 2000 at 13:56:36 (EDT)

I am so glad I have found this site, because this terrible curse has been part of life since I was 14 years old. I am 27 now, and I seem to get hit with a cycle either in the beginning of spring or fall. I was diagnosed when I was 15 as a classic cluster headache sufferer. Yeah that is great, all of my doctors knew what it was, but no one knew how to cure them. I have tried them all (and excuse the spelling)... Fioricet, Caffergot, Verapamil, Lithium BiCarbonate, Oxygen, Immitrex tablets and shots (until I felt like I was having a heart attack), and a few others. I have fought with many neurologists who never really knew how painful these are. When I was in high school, people thought I was crazy, since I would be fine one second, and the next I would be doubled over with my head in my hands, my elbows on my knees, and praying that the knife on the right side of my head would be pulled out. When I got to college, everyone seemed to have a lot more sympathy for me because they saw how dabilitating they are. Now all of family and friends know what I have to go through, especailly my parents who feel like they are in the cycle with me. Well, sorry if this is a bit wordy, but unfortunately as many of you know, this is only the surface of the entire experience. I could write a book. I will be chatting with you soon, and remember, this makes us stronger in life.... if we are strong enough to get through these attacks, then we can accomplish anything, for it is truly a bad curse.
Kevin Iannuccilli <Kevin.Iannuccilli@CitizensBank.com>
Saunderstown, RI USA
Monday, April 03, 2000 at 11:52:29 (EDT)

hi, been a periodic CH suferer for 4 years now, but only since a few weeks (beginning of current cycle) found out that what it was exactly, before I thought it was sinusitus, a brain tumor, chronic daily headaches, ... - I'm really glad I found you and that I'm not alone the current cycle started about 4 weeks ago starting at night, now mainly shifted to day-time; I've had a few level 10 attacks last week running on the street screaming, crying, nearly fainting from the pain - now it's a bit better (level 7) Since discovering all of you I feel a lot better and I always think of you when I'm walking, stumbling on the street at night or during the day, muttering or making noises from the pain - the rest of the world might think I'm crazy, you at least understand me
tom <tom.cool@chello.be>
Heverlee, BELGIUM
Monday, April 03, 2000 at 10:44:07 (EDT)

clusterheads are superior people---let's fight
MiKe <fourtienkt@aol.com>
wheeling, il USA
Sunday, April 02, 2000 at 18:55:45 (EDT)

 

 

 


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