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guest book

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 June, 1998. Thank you for your continued active involvement in this site and keep those guestbook entries coming!

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Looking for information
Sue Hinton <hintons@oakharbor>
Oak Harbor, Wa USA
Tuesday, June 30, 1998 at 23:09:08 (EDT)

I started getting stabbing headaches on the top of my head about 6 months ago. They started out as once a day "stabs" and have progressed into week-long epiodes. I have been to so many doctors, and since the pain is not in the eye area (it is on the top of my head), they are all baffled. I was recently prescribed Verapamil and I plan to start taking it tomorrow since an episode started this afternoon. Hoping it works!! Also, thanks to the creators of this site!
Laura Ridzon <>
McLean, VA USA
Tuesday, June 30, 1998 at 21:39:04 (EDT)

I have been a CH suffer for close to two years now. I have tried every treatmnet known to man. I have tried Imitrix, oxxygen, Midchlor, zloft Klopin, Pamelor, Serzone, Etc etc etc. I have visited emergency so many times they think i am a kidding..The best they can do is give me Stadol. But even then they are ready to cut that off too. try to tell a resident doctor the level of pain you feel and they think you are over exaggerating. Unfortunately, STADOL(a nasal sniff pain killer) has been my only relief. I sure hope that the find something else before my liver gives out. They only thin I do if I don;t have my STADOL is pound my head on the pain until the pain subsides for just a little while. I hope we all get the relief we deserve ssome day. Peace, Bill Elliott jr. St
William Elliott <St Greek@AOL.COM>
Spartanburg, SC USA
Tuesday, June 30, 1998 at 10:43:55 (EDT)

I have suffered with the Beast since I was 13 years old. I am now 45. I usually have headaches for a period of 10-12 weeks with a break of around 17 months. I had gone 27 months (I thought I was over them) and last November, had the first of what ended up being 16 weeks of continual headaches. I use Imitrex to treat each headache. During the peak of the latest episode, I was having an attack every 3-4 hours. I used injections for no more that four in any one 24 hour period. During the cycle, I used 52 injections and over 200 tablets during this period. I do not take any medications during my "off" period. I no longer smoke (9 years) and do not drink alcohol. Why agitate the BEAST? My son gets headaches (17 years old) however they have not yet grouped into clusters (may he be spared). I keep looking for new information on the treatment and medications that are effective. To date, Imitrex has been the answer to my prayers. To those out there, keep the faith. Life is good.
Bill Deadrick <>
Petersburg, WV USA
Tuesday, June 30, 1998 at 08:54:12 (EDT)

I have suffered with these headaches since 1983. I am now 36 and just started a cycle a week ago. I have'nt had an attack in over a year. I can't believe their back!!! I, like most of you have tried everything. I saw one of the "best" in the field in Wash, Dc for three years. Nothing, including Oxygen, verapimil, sansert, lithium, even thorazine and sodium amytol gave me relief! The closest medicine that has any (very little) effect is midrin, if you take it in time. The only other relief is from strong pain killers like percodan. Try to explain how horrible the pain is to a new doctor and they just don't understand. Dear God, I hope they end soon!! I can't believe they can put men on the moon, but they can't cure us!!!! Good Luck!
Gene F <>
Satellite Beach, Fl USA
Tuesday, June 30, 1998 at 08:40:31 (EDT)

I've suffered from CH for 22 years. For me they have occurred about once a year lasting anywhere from a few weeks to 3 months. I've tried many meds for the pain and preventative meds as well. Only last year did I find a drug that aborts an attack. Imitrex injections work well for me, but when my CH come more than twice daily, this is not an option since only two injections can be taken per day. Have tried Prednisone several times with great success in keeping the headaches away, but they return after coming off the drug. Have recently tried Migranal nasal spray for the past week, which has worked well, although not as quickly as the Imitrex. Now, my headaches are down to one per day with the Migranal aborting each episode after about 20 minutes. Usually the headaches taper off over a period of weeks or months and then disappear entirely. The longest period I've gone without CH is 2 years. This last time I went a year and a half. Most of my life they have begun occurring in June, but there have been a few episodes that began in January. Tried Oxygen once in the ER a few years ago, which worked within 20 minutes, but no one has been willing to let me try it since. Most of my life the diagnosis has been Migraines, but my symptoms more closely match the Cluster Headache. Anyone whose experienced them know how excruciating the pain can be. Mine feel like someone is drilling a hole through the left side of my head. I'm thankful I finally found at least two drugs that manage the pain. For many years I just suffered through them, with most of the drugs such as Caffergot, Midrin, Percocet and the like, pretty much useless. Glad I came across this site. I didn't realize there were so many who suffer from these debilitating headaches. I have done some extensive research re: meds. If anyone needs any information, please contact me.
Laurie B. Baxter <>
Fredericksburg, VA USA
Tuesday, June 30, 1998 at 01:51:13 (EDT)

I have been suffering for around 3 years (40yrs)from what I thought were sinus related headaches. I just stumbled on a TV news show that had someone talking about CH. And I said "THAT'S ME!!". I search and found this site. Great. Now I know the direction to take.
Mark Schmude <>
Cape Canaveral, FL USA
Monday, June 29, 1998 at 12:02:31 (EDT)

Have had Clusters since early 20's. Mine occur over left eye. Like a vise tightening on the vein. Eyes run, Nose runs, Scalp sweats. Pain is intense. No medication has helped much. Over years have had cat scans, brain scan, Mt. Sinai Headache clinic, sinuses x-rayed...fortunately, all negative. Coming out of cluster now. Had two lasting three hours Thursday and Friday night. Now feel like a hangover. Incidentally, mine build. the first two or three are short in duration then they build to the three hour variety. The only consolation is I appreicate the discomfort of other's more. A neurosurgeon told me once that they tend to lessen in frequency and intensity as you get older. I can say that as I have gotten older there is a longer interval between but when they occur, well, the latest is the most painful! Also, I would be curious if anyone is also sensitive to certain aromas (cigars, perfumes, paints) or changes in atmpsherice conditions during a cluster atack. I used to run seven miles then go into an air-conitioned room and get an attack. the reverse would happen in the winter. I still think there is something tied to the changes in temperature/humidity that trigger these things. Why at certain times rather than others is stilla mystery. Any thoughts would be greatly appreciated!!
tom de francesco <>
new york, ny USA
Monday, June 29, 1998 at 11:22:16 (EDT)

I am excited about finding this page. I will probably look here more than my husband, since he can't read for more than 10 minutes without getting nauseous. Do you know of any other cluster headache sufferers that have this problem?
Sue Beers (wife of sufferer) <>
Denver, CO USA
Sunday, June 28, 1998 at 19:08:26 (EDT)

I started having cluster headaches at about 14 years of age, and it was many years before I actually found out what they were (docs said sinus, stress, etc) This is a great resource site!
Gary Walkup <>
Carbondale, IL USA
Sunday, June 28, 1998 at 11:24:27 (EDT)

what a great site for us sufferers,Its nice to know there are others out .
michael Z <meezee>
ny USA
Sunday, June 28, 1998 at 10:21:12 (EDT)

I have only recently been diagnosed with these horrible things, while all along Doc.s thought that all of my headaches were migraines. I've been a sufferer since the age of eight. Thanks to the Net, I now have a defense route to take. And thanks to this site, for letting me know, that I truly am not alone. God Bless you all!
Missy J. <>
Cape Coral, FL USA
Saturday, June 27, 1998 at 17:33:53 (EDT)

I've suffered from Cluster Headache for more than 15 years without knowing why and what it was. I'm 25 now, and today I've found out that it's Cluster Headache and that other people have it too, even though not many. This actually made me cry.
Thomas Beck <>
Lucerne, CH Switzerland
Saturday, June 27, 1998 at 11:30:04 (EDT)

What a great site! I've had Clusters for all my adult life. Reading comments from others is a remimder that others have had IT in their lives. My heart goes out to all of you and the family members who have to share in your misery. I'm on my Sansert dry out for thirty days. Kaiser HMO has an eight dose per month limit on the Imitrex. We're fighting with them through my neuroligist. Meanwhile I've got Demoral and a room to pace off the pain. As others have found if my heart rate is slightly elevated the BEAST passes more quickly. Good Luck to this site, I'll be back.
Bill Gage <>
Raleigh , nc USA
Friday, June 26, 1998 at 20:39:56 (EDT)

What a grear site! I've had Clusters for all my adult life. Reading comments from others is a remimder that others have had IT in their lives. My heart gores out to all of you and the family members who have to share in your misery. I'm on my Sansert dry out for thirty days. Kaiser HMO has an eight dose per month limit on the Imitrex. We're fighting with them through my neuroligist. Meanwhile I've got Demoral and a room to pace off the pain. As others have found if my heart rate is slightly elevated the BEAST passes more quickly. Good Luck to this site, I'll be back.
Bill Gage <>
Raleigh , nc USA
Friday, June 26, 1998 at 20:39:15 (EDT)

With a 33-year history of severe cluster headaches, my profound familiarity with this curse goes without saying. I'm in the "business" of eyes, but nevertheless will take time out one of these days to provide some interesting input into your web site. This is the first time I've ever gotten onto the internet (with alot of help from my staff). What a great way for victims of cluster headaches to share knowledge and feelings. Will touch base soon!
Dr. Jerold F. Janks <Sf Eyes @ IX. NetCom. Com>
San Francisco, CA USA
Friday, June 26, 1998 at 16:10:04 (EDT)

Living with "the beast" for most of my life has truly taught me the meaning of living life fully from day to day. When the headaches do start again,, my life has always ended for 6 to 8 weeks. Now,, with new medication, imitrex, verapamil, and the use of steroids,, has finally brought some light into my life. I beat the bastard this time,, after only 3 weeks into the cycle. Maybe we have the beast on the run. Good luck to all of you out there:)
Kevin <>
anderson, IN USA
Friday, June 26, 1998 at 14:30:36 (EDT)

Episodic CH sufferer. Just got over bout 3 months back. Have yet to find the perfect elixir. Have sufferered every 2-3 years since the age of 16. Now aged 29.
London, UK
Friday, June 26, 1998 at 08:49:46 (EDT)

Hi, thanks to whoever provided all this information on cluster headaches. I have only been diagnosed since Aug 97 but it seems like forever. I really appreciate all the info. thanks jeannie
hedges <>
san antonio, tx USA
Thursday, June 25, 1998 at 22:33:40 (EDT)

I've just found this site and I am amazed .I Thought I was the only one.I've suffered from yearly clusters for 15 years and have never heard any mention of oxygen although I do use Imigran injections as of last April which work very well.Nobody seems to mention sickness am I the only one who vomits continuously for 6 weeks during my cluster ? Excellent site keep it up
Tony <>
Thursday, June 25, 1998 at 07:11:17 (EDT)

Thank you All! We are the strong! I'm not alone. Why are WE so special? After reading all of the your letters, I had to write in. Just maybe the right person would see this site and see how many of us are suffering, and just maybe a CURE! I have had the Cluster for so many years now I can not really remember when they started. I have tried it all, and I'm still looking for the One to STOP the PAIN!
Paul Morgigno <>
ct USA
Tuesday, June 23, 1998 at 22:12:33 (EDT)

This site is great! I will definitely be online to chat with some of you soon. I had my first bout of cluster headaches in April, 1991. I woke up in horrible pain and before I could get to the medicine cabinet for some aspirin, an intense sharper stabbing pain dropped me to my knees. I thought I was going to die. The headaches lasted about 3 weeks. My doctor trying several different things. I think the headaches just stopped. My next bout wasn't until New Year's Eve/New Year's Day 1994-1995. Again the headaches lasted about 3 weeks. I have had the headaches every year since then all lasting about 3 weeks. That is until this year. I am on my 9th week of headaches. Nothing works. The neurologist I am seeing now is a specialist in headaches. However, he has never mentioned oxygen as a treatment. I will be calling him tomorrow. He has mentioned Prednisone, but says I can only take it in a emergency (like when I'm out of Imitrex) and 80mg/day for a maximum of 2 days. Then I have to stop taking it. I also tried Sansert (none to very little help). I am currently taking Depakote (1500mg/day). It seems to be blocking the pain pretty good. I still feel the headaches, but at a mere fraction of what they usually feel like. Maybe if we all put together what has worked for each other, we might be able to find a combination that works to at least control the pain to something manageable until the bout ends. Please feel free to email me I will respond to every email message. Good luck to all of us.
Chris York <>
Denver, CO USA
Tuesday, June 23, 1998 at 02:12:22 (EDT)

First of all thank you, ive read all the letters with tears in my eyes, I also have CH iive had it since 15, im now 33, I feel like ive found a new family. thank you for a wonderful web site , i'll visit often DJ, I would really like to visit with you.
Monday, June 22, 1998 at 16:14:25 (EDT)

Last night I was awakened at 1:30AM with the monster and I did something that's going to sound ridiculous.... I did jumping jacks and it aborted in less than 10 minutes. Has anyone else noticed with increased movement that the pain subsided? If not I encourage you to try it. I finally found something that worked!!!! Thank you for this website!!!
Jennifer <>
Port St. Lucie, FL USA
Monday, June 22, 1998 at 09:38:11 (EDT)

I have suffered from these headaches since I was 20 years old. The day and the time I first felt that undescribably horrible pain was August 8, 1980. From that day forward I have suffered, now chronically. I am so happy to see that someone out there cares enough to link all of us up together. We need that support. No one, unless they have this ailment really knows what head pain really is.
Valerie Abeling <>
Schenectady, NY USA
Monday, June 22, 1998 at 08:59:22 (EDT)

Hi Great site Im a CH from way back. 30 years ago they started, every 18 months to 24 months . Last for about 4 months Tried Oxygen 10 years ago and yes it works great , industrial oxygen,was all I could lay my hands on . Used it for about 10 minutes after a attack started for about 10 minutes, last bout was 6 years ago !!!!.Gave up Smoking 4 years ago, was smoking about 30 smokes a day . Anyone out there that is a smoker or ex smoker that can relate to this . Hey I feel for all who suffer. It took me 10 years to find out what was wrong then NO one knew what they were. Hang in all you people it can only get worse.or better.
Ramon Baucke <>
Rotorua, New Zealand
Monday, June 22, 1998 at 05:14:02 (EDT)

Thank you for putting this site for all people searching for the answer. Talk with you all later.
Darrell <>

Sunday, June 21, 1998 at 23:22:08 (EDT)

Hi, does anybody from Canada know how much oxygen "gear" is to purchase for home. I would also like to know if it was easily obtainable or if it was a huge ordeal to buy. Please reply to if you have any information.
Jan Mansell <>
Moose Jaw, sk Canada
Sunday, June 21, 1998 at 18:59:20 (EDT)

I was reading in this Guest Book, and feel compelled to say that I had a brother that suffered from Cluster Headaches for 10 years, I was away from home for 15 years so had not realized the effect that it had on his quality of life until he took his life 3 weeks ago. I have seen a lot of people put their input on the headaches themselves, but it would be benificial to people around you to express the other feelings that accompany the headaches, such as the fear, anxiety, feeling of failure that form the circuit that enables some to comtemplate taking their life. If I or may family can help anyone that has a loved one or is suffering from Cluster Headaches PLEASE let me know. Thanks, Julie
julie little <>
Goldsboro, NC USA
Sunday, June 21, 1998 at 18:25:23 (EDT)

I'm glad to see a page dealing with cluster headaches. It is nice to know you're not the only one dealing with these.
Mike Hisle <>
Versailles, KY USA
Sunday, June 21, 1998 at 18:01:04 (EDT)

looking for any info besides the ones ive read the only thing that works for me is stadol and demerol shots from the doctor and that makes me very tired and unproductive at work looking for a more natural treatment ive tried all the other from beta blockers to oxygen please help
dominic <>
dayton, oh USA
Sunday, June 21, 1998 at 17:55:43 (EDT)

Saturday, June 20, 1998 at 12:46:25 (EDT)

I am a sufferer of these debilitating, horrible headaches. I have had them for 20 years. Nothing helps the pain except pure oxygen. I would be willing to be a guinea pig for new drugs. The pain is so excruciating that those thoughts of the s_ _ _ _ _ _ word have crossed my mind in the middle of one of these. Am I alone in these feeling's?
Antoinette Michelle Martin <>
Wasilla, AK USA
Saturday, June 20, 1998 at 11:25:49 (EDT)

Terry Barth <>
Minneapolis, Minnesota USA
Saturday, June 20, 1998 at 09:26:10 (EDT)

Sandor Ochoa <>
Tampa, fl USA
Saturday, June 20, 1998 at 08:05:19 (EDT)

fine to see, not to be allone with this curse. many thanks to the provider of all the informationes given on this web-page. pls, don't forget, ch sufferers are living all over the world. I would like to hear from those sufferers, who find cure. - bye boernie
Bernhard Forgacs <>
Dornbirn, Austria/europe
Friday, June 19, 1998 at 11:56:32 (EDT)

Friday, June 19, 1998 at 11:03:17 (EDT)

I just had my first one this week. My doctor wrote on the order for the CT scan that it was the "Worst pain in patient's life." Exactly what I told him. It lasted off nd on for a day. But I am also wondering about th in the ears. I had been having short periods of hearing loss with ringing for the week before and they are still continuing.
Amy Betz <>
Macomb, IL USA
Friday, June 19, 1998 at 10:06:01 (EDT)

Wow! What a site. Just came upon it last night. I am sitting here in tears reading all of your entries. It is such a relief to know you are not alone. The pain is unbelievable. NO ONE understands. Two years ago, after a trip to ER and 100mg Demoral later (still had the headache) - I said enough is enough, I found the Diamond Headache Clinic. (It was much nicer that committing suicide - which is what I probably what I would have done.) They are my "miracle workers" for now. I would be more than happy to give info on what they did to 'break up' my cluster is welcome to email me. I have tons of stories, one called "Man's Worst Pain". I am praying to God above every day that I may forego this season, but I feel it sitting in the back of my eye, just waiting to wake me 1-2 hours after I fall asleep. Please, please let me know if I can help and give info. Diamond Headache's website is : Let me know - I CARE. Wendy
Wendy <>
Ludington, MI USA
Thursday, June 18, 1998 at 21:17:11 (EDT)

I am looking for info on clusters. I was diagnosed apprx. 10-12 years ago with a combo of Cluster and Migraines. What medications I"m not allergic to I simply donot react to.
B. Caouette <>
Tampa, FL USA
Thursday, June 18, 1998 at 13:51:37 (EDT)

I have finally found a Dr. to my prayers. I was so overly medicated with stadol, vicaden,valium that I was zombie in intense pain ,no sleep for days on end. I'd been to the ER 4 times and finally hospitalized . I had to scream and yell at neuro for 02 and he said no! Try migranol he said because women are not classic CH sufferers. I tried it and it put me in the hospital. The 02 worked immediately and now I have it in the house. The real help happened when I fired the Stupid neuro's amd went to the GP at my local clinic. She witnessed the CH attack. She was astounded at the meds and removed all the narcs !! Left me with a predisone shot in the rear and up the verapamil to 300mg daily-tapering, 60mg predisone pills daily tapering,Naproxen for breakthrough with Immitrex Ns or injections for severe attacks to abort. She suggested real tight o2 mask with head bent forward to open vasulars. She promised to help me. She has! I've slept two nites now for 6 hours straight with mild attacks aborted easily. My life is coming back! Don't let these Dr's be boss. She listened to what worked and was appauled at the fact a neuro saw me y CH attack and sent me home with only verapamil and immitrex and then aborted Immitrex and denied the o2 ! She consulyed her head pain specialists and personally called me to tell me he said"CH are not migraines, they are a" totally different animal" and we do not understand the biological function but have been having some measures of success in aborting severe cycles with Predisone, o2 and Immitrex, the best advice is to listen to the patient,log, monitor and watch for what works. Life may be good again for me and the DR. and the nurse -angel of mercy are being sent flowers today. I write everything down and keep track of meds and pain levels. She claimed Narcotics and pain meds can really attribute to Ch attacks just as alcohol can send us all to the brink - made sense to me. She also said sleep deprivaton will break the system down and contine the attacks. Good Luck to All! Your in my prayers! Please write back-hope to meet some at CHAT CH tonite!! Beth
Beth <>
Sullivan, Wi USA
Thursday, June 18, 1998 at 08:35:57 (EDT)

This experience has been something! This site has been so great to know we are not alone. I am so glad to announce that after 4 ER visits and 1 hospital stay on 02 before mine could be set up at my house and alot of yelling at dumb Dr's I have found some relief. It was amazing! I found my Gen. my local clinic for a followup after hospital discharge. She ws appauled at the amount of narcs and meds that had continually been used on me with no care after or concern. She removed them all! She gave me a predisone shot, large dose of 02. We kept on with verapamil 300mg,600mg of oral predisone-a high dose eventually tapering, naprosyn when breakthrough pain occured with immitrex for the ones that wake me up and o2 with tight mask on & with head bent forward to open vascular to sinus on left side where pain is.This female Gp witnessed my CH in her office and was astounded that I had been suffering like this. She said I was termed a CLASS 5 -severe pain and promised she would help me. She has done it to. I've bee able to slep now for 6 hour stretches-first time in 4 weeks w/o attacks. Have hope all! I know this won't work for everyone but she has seemed to break my severity of cycle down and she and her nurse call me daily to check on me. They are being sent flowers today. The Doc also consulted a specialist in head pain and he said to her that Clusters are not migraines. He said they are not understood and do not biologically act as a migraine and do not respond to regular migraine meds. He said it is seldom he ever has prescribed o2 to a migraine patient because it doesn't really need to be done but it normally will abort an attack of CH ."We are dealing with a completely different animal" he quoted. It was so good to hear that. Because all we (CH) know migrianes are bad news as head pain goes but they never want to make you contemplate suicide!! I wanted to share this with you all and wish all the best. I keep checking the CHAT ROOM but few are there lately and I worry we are all in a state of diability and say a prayer for all.Please write back anyone. I'd love to talk. supposedly we are a minority but we must keep the Dr's working for us and keep communicating what we learn Love to all!! Beth
Beth Webb <>
Sullivan, WI USA
Thursday, June 18, 1998 at 07:53:39 (EDT)

I just started w/these headaches having 2-4/week thought they were allergies/sinus. Can anyone tell me if severe ringing in the ears is a symptom?? 755 of mine start in the early am hours so I wake up w/them. Seeing a Neurologist next week.
Cheryl <>
Houston, Tx USA
Wednesday, June 17, 1998 at 20:56:25 (EDT)

I was diagnosed with CH in 1991. Since then I have been medicated to the extreme. I have been on everything from Motrin to Vicadin to Fiorinol to midrin to Imetrex. I will ask my doctor about the possibility of Oxygen treatments. I have (fortunately, it sounds) had four 12-week sessions of the CH since 1991.
Cliff Rudnick <>
Sacramento, CA USA
Wednesday, June 17, 1998 at 15:45:48 (EDT)

Having just read dozens and dozens of entries here, I realize at age 59 and having suffered form cluster headaches since the age of 16 that I have one of the longest histories presented. After a lifetime of 40 or more doctors in every sort of clinic and after about every clinical test that can be performed upon the head, I have some hope at the present that I might be closing in on nailing the beast to the wall. I recently acquired a new personal physician "to write painkiller prescriptions for me" because my last, a neurosurgeon told me not to bother copming back because there was nothing more he knew of that he could do for me. When I first talked to my new physician, who is somewhat younger than myself (don't let that bother you in your own case), I asked him one question: do you know what pain is? He said he did, that he was a migraine sufferer himself. Close enough, and, I thought, some hope that to this one I might finally be something more than just another file folder. It has only been two weeks, but I think the tide shows signs of ebbing. For the first time ever, I have been prescribed a painkiller that works. There is a caviat to its effectiveness, but if I take the drug, hydrocodeone w/apap, as soon as I feel the pain coming on, it will abort the attack. I might have to do it four times in four hours, but each time the attack will be aborted. The caviat is that those attacks that wake me up at night and are usually already hard upon me cannot be killed, only dulled and then only a little. Those attacks I battle completely on my own. My new doctor has also prescribed a preventative drug, prednisone, which is intended to block certain chemicals released by the brain into the bloodstream in over-abundance that causes artery walls to inflate. The drug has been prescribed on the hypothesis that such is happening; it has not been proven. However, the one-a-day pill does in fact seem to be easing back the whole parade of attacks, and I am hoping for more positive finding at the end of 30 days. So far, you name the drug and it has probably be prescribed for me, all the way from pure oxygen to near-psychodelics, none of which have cut pain with either reliability or speed, but have left me to writhe in hell from 30 minutes to 12 hours at a time. Perhaps some of you might inquire of your own physicians about the use of these two drugs. I do hope they might help someone. I know your pain and I know your dread.
George Burley <>
Seattle, WA USA
Wednesday, June 17, 1998 at 03:22:55 (EDT)

This web site may well represent the start of the rest of my life! I was so overjoyed when I came across it. I have been suffering 'migraines' for about 6 years and nothing my doctor prescribes has worked. Doing a little research last year I 'discovered' cluster headaches and everything fell into place. I am certainly not a classic cluster headache sufferer but a lot of what I understand about the condition fits my experiences. My task now is to gather strength from you wonderful people and point my doctor in the right direction. The medical fraternity, in my experience, know little of the condition and, consequently, their approach is hackneyed and superficial i.e. 'take these migraine tablets, go away, try them, come back in a month's time and if they haven't worked I will change your medication'. Unfortunately, with this approach, my condition remains and I suffer the side-effects of the tablets! Ultimately, I may discover that I don't suffer from cluster headaches but with your support I WILL find the solution to my problem. I love you all.
Graham Moore <>
Liverpool, United Kingdom
Tuesday, June 16, 1998 at 16:02:05 (EDT)

My husband suffers horribly from clusters. I am looking for information and treatment. We have tried all of the usual medications that have worked in the past and they do not seem to working this time. Oxygen and Imitrax to work most of the time, but not always. We need something to break this cycle. Please advise if anyone knows anything else we can try. Thanks. pj
pj <>
Wylie, TX USA
Tuesday, June 16, 1998 at 12:54:48 (EDT)

My husband suffers horribly from clusters. I am looking for information and treatment. We have tried all of the usual medications that have worked in the past and they do not seem to working this time. Oxygen and Imitrax to work most of the time, but not always. We need something to break this cycle. Please advise if anyone knows anything else we can try. Thanks. pj
pj <>
Wylie, TX USA
Tuesday, June 16, 1998 at 12:53:40 (EDT)

Have been going crazy for over 12 years, glad to see you are here, will add any information that I recive that is different than yours
Jon Thomas Gumina <>
Orlando, , Fl. USA
Monday, June 15, 1998 at 08:24:58 (EDT)

Well done site and I hope we will all find a cure some day.
Londonderry, NN.H. USA
Monday, June 15, 1998 at 07:52:24 (EDT)

Thanks for such a great place to get up to date info
Albert Nelson <>
Bristol, PA USA
Monday, June 15, 1998 at 02:46:40 (EDT)

i just found this site, and its like coming home!! i've had clusters for about four years. not chronic, thank god. as you all know the pain is unbelievable!! the greatest feeling i've known is that moment, when you realize its leaving, and in a moment or two its gone! better than sex!
pittsburgh, pa USA
Monday, June 15, 1998 at 00:20:13 (EDT)

Good information for an unfortunately painful problem. I have sufferred from CH for nearly 9 years (fortunately not chronically) with clusters lasting 4 to 6 weeks and cycles of 12 to 23 months. I am trying oxygen treatments this go-around with reasonable success. I still don't go far from the hydrocondine pain meds.
Mark <>
Winnemucca, NV USA
Sunday, June 14, 1998 at 23:59:16 (EDT)

What a great site!I just decided to search the web for cluster headaches and found this site.These demons in our heads have totally F****D my life!I'm afraid to go to a restaurant now or anywhere in public for fear of an attack.My clusters are permanent and daily.I've lost my job and some friends who cant handle my insane episodes.Suicide enters your thoughts when the pain is unbearable but after it goes away you are glad you didnt do it.Prednisone had me cluster free for a solid month but I was on industrial strength.(60 mgs) per day.I am now on (10 mg) plus 240 mg of verapamil and ergomar plus O2.It makes most of the attacks at least bearable but not all of them.I just wanted to share with fellow sufferers my information.I will be seeing my doctor soon with some new info I have learned from here.Thanks to all of you that have shared your experiences.Take one day at a time.
Jerry McRoberts <>
Hamilton, on Canada
Sunday, June 14, 1998 at 21:24:06 (EDT)

Hello all. My fiancee just showed me this page. What a great idea. I have been told for years about other people having cluster headaches, but never heard from the horses mouth. I have had CH since the age of 19. I am now 41. I have only missed 2 1/2 years having them. 2 times per year for about 2-3 months. Starts out with 1 -2 aday and goes to 5-6 or all day. Have had 90% of the drugs for controlling and stopping the cycle but to no avail. Only Imitrex has seemed to help. I quit drinking, smoking, eating certain foods etc, but nothing breaks the cycle. Still trying though. Causes me alot of frustration and I know for friends and family around me. I would not wish this on my most unfavored enemy. Always have wondered what I did to deserve these.. Hopefully they will find a cure. I was told that at 40 they tend to go away. Well, I blew that theroy as with many others throughout the years. Well enough said. Take care all and be sure to enjoy life on the inbetweens.
DeWayne <>
Coeur d"Alene, ID USA
Sunday, June 14, 1998 at 02:19:35 (EDT)

I have chronich clusters.I had my first attack 14 years ago when I was 49. I have one about every 2 years. They normaly give me warning during the day, and I take caffergot and head it off. I have had a lot of pain in my life, but clusters top them all.
Kenneth E Wright <>
Somerset, ky USA
Sunday, June 14, 1998 at 00:06:33 (EDT)

Congratulations for this great site! Count me as another CH victim! Very interesting info and personal experiences only fellow sufferers can understand...
Wilson Ling <>
Porto Alegre, RS Brasil
Saturday, June 13, 1998 at 20:34:08 (EDT)

I have just started to experience headaches. I am not sure if they are cluster or not. From what I have read most of my symptons match. I have been keeping a diary so when I talk to my dr he will see what I have been going through. My girlfriend has Lupus and has migraines as well so I have a really good buddy who understands well. I have Rheumatoid Arthritis and would love to just find out what is causing this. I was brought up to believe headaches were a sympton of something else happening. Could it be all the medication I am on? Could it be my being overweight? I keep thinking if I find the answer I could stop these from happening. Meanwhile my Dr gave me Zomig. It works quite well unfortunately its very expense. Thank god for Insurance. Its nice to have a place to go to to read and get information and not having to rely solely on what your Dr says. Just would like to say Thanks for putting sites like this up for people like me.
Sari Markley <>
Beverly Hills, CA USA
Saturday, June 13, 1998 at 10:58:15 (EDT)

I'm a cluster sufferer of 18 years in the midst of a cycle that doesn't seem to be stopping. My dear daughter found this site for me. Bless you for creating it! Treatment issues, of course, are a big concern to me - but how wonderful it is to know that here is a place that everyone *understands* what I'm going through!
Nancy Coleman <>
Scottsdale, AZ USA
Saturday, June 13, 1998 at 00:45:12 (EDT)

Debbie C <DLCOKE354>
Friday, June 12, 1998 at 22:47:07 (EDT)

suffering from headaches wasn't what i worried about when I was younger. I always thought I'd get cancer or some other disease.My headacher seem to be getting worse each time I get one. this the one i have right now has lasted almost 24 hours. my first episode lasted maybe 1 hour.sometimes i worry that i have some other disease. even the migranes i used to get never hurt this bad. I've been to the hospital twice already. I've missed work a few times. It is so sad to see that so many people suffer from these stupid headaches. jan mansell, moose jaw, Canada
jan mansell <>
moose jaw, sk canada
Friday, June 12, 1998 at 15:11:08 (EDT)

It's a great relief to be able to find all this information about this excruciating condition. I am in the relatively early stages (first couple of weeks) of my third bout of headaches. The gap between attacks has been almost exactly 3 years. Lithium worked on the first two occassions, but the headache now seems to be "breaking through" once a day after I have been sleeping for a short while.
Laurence Longe <>
London, United Kingdom
Friday, June 12, 1998 at 09:09:55 (EDT)

My husband has had cluster headaches for 24 years. They have been chronic for 6 years with 4 or 5 headaches/day. He has tried everything, including investigating surgery. He is becoming increasingly desperate. Amazingly, he manages to continue working at a high stress job. I check out as many web sites and entries that I can to try to find new meds and/or treatments that might help.
Cindy Cormier <>
West Hartford, CT USA
Thursday, June 11, 1998 at 12:22:53 (EDT)

I have had clusters for 27 years and was finally diagnosed correctly only two years ago!! Unlike some, my cluster period lasts about 1 - 2 weeks and usually occurs every 4 - 6 months. I have been taking Verapimil and recently have tried Lidocain, oxygen and Migranol, but to no avail. I am currently in my "cluster period" and now that I have internet access I can hopefully find some help.
Dale Patterson <>
Thursday, June 11, 1998 at 10:32:26 (EDT)

Wednesday, June 10, 1998 at 22:53:16 (EDT)

Wednesday, June 10, 1998 at 22:41:06 (EDT)

I have had these deamons for about 18 yrs now and have tried many things. It is frustrating to go to a doctor only to have them not have an answer to the problem due to too many factors and unknowns about the headaches. I appreciate this site to find a place where others understand the issues of the cluster headache. Thanks
Alan Barnes <>
Marietta, GA USA
Wednesday, June 10, 1998 at 17:59:31 (EDT)

I have had cluster headaches for 25 years and have only tried ergotamine and oxygen. I have not tried other drugs because of the side effects reported. I have found this site a real benefit to share the common problems of this condition. Thanks.
Bob Evans <>
Stafford, UK
Wednesday, June 10, 1998 at 16:56:13 (EDT)

I'm an ole clusterer from 1950's to now. I get episodes about every two to three years. Upon starting, they can last from two to four months with a gradual building from managable to a crecendo that's "The Mutha of all Headaches". I'm fifty-one years old, and I thought by now, all this would start to subside, but Noooo, not yet! Mayby by year fifty-three or fifty-four, I'll ease up. By the way, Do any of you have a hard time convincing your doctors about the wonderful effects of the oxygen treatments? "What's the big deal with them wanting to try every chemical? and disregarding our experiences"? Anyway, I thank you all for this opportunity and this forum. I hope to get more onto this area later. thanks again, "Mr. Bill"
Bill Reaties, ("Mr. Bill") <>
Midwest City, , OK USA
Wednesday, June 10, 1998 at 16:17:18 (EDT)

Thrilled to find this site. Its been 20 yrs for me and many incompetent doctors since. I now have a great one-Dr.Rose. (no, not a relative).I am chronic now and take the following per day--4 Depakote, 4Lithium. 1 Calan. For pain I take fiorinal (works best for me), and lots of pure oxygen.(Get with Rx). Right now I am trying to keep up with full time college, work and two teenage doctors. I must tell you all about something I never tried before that my Dr. tried to break the cycle I just went through of 4 days and nights of no sleeep and headaches every hour. It's called Prednisone and although it's only been one day have only had 2 headaches. To me, it appears to be working. I am on disability right now and need to get back to work. Some advice to all of you----If your doctor doesn't provide you with support and relief, fire them. I had to learn this years ago. I especially found that male doctors were fast to blame these on hormones. Ugh!!!!!I would travel cross country if need be. God Bless all of you and don't leave it up to luck. Take your health back into your hands.
Sharon Ahearn <>
Sebastian, Fl USA
Tuesday, June 09, 1998 at 14:54:35 (EDT)

I LOVE your website! I do know that, Clusters are a nightmare!!!
Tuesday, June 09, 1998 at 13:38:35 (EDT)

Cluster Headaches can be truely aweful! You are not alone!
Tuesday, June 09, 1998 at 13:24:48 (EDT)

I can image people out there going through the pain I do. I hate knowing that this pain is affecting other people. I'm twenty years old and I started having cluster headaches when I was a freshman in high school. These headaches total affect your life and the everyday normal things you do. Now that I'm in college they affect me going to class, and my grades slipped tremendously. Whenever I have a headache I just shut down. I get dizzy, light is my biggest enemy next to any kind of noise and my only relief is to lay down in a totally quite dark room and home to fall asleep and sleep through my hours of pain. If anyone out there has found an effective medicine or treatment I would sure like to have it on hand and know. These cluster headaches are really starting to affect my work also. It's almost impossible to drive to work or be productive. Thanks for listening.
Richard Words <>
St. Joseph , MO USA
Tuesday, June 09, 1998 at 10:18:12 (EDT)

I was diagnosed six years ago with cluster headaches. They lasted a few weeks and nver had them again ,until now. They have returned now and seem to last longer and the pain seems to be more intense. Thought about seeing a doctor again ,but I read some articles on the side effects of the prescribed medicines , not too thrilled with that. This web site is a great idea and have enjoyed it. Thanks
Stephen Johnson <>
Cartersville, GA USA
Tuesday, June 09, 1998 at 08:30:33 (EDT)

Well, I am very happy to have found this site! For years I was under the impression that I was sufferring from migraines but recently have come to believe that I have cluster headaches. I still belive that the migraines are complicating things since they do run in my family but my symptoms seem to coincide with cluster symptoms: building pressure, sudden horrible pain around one eye, nasal stuffiness, etc. Things have become so complicated I cannot readily attach the headaches to a certain time of year although I do remember that they originally occurred only certain times of the year. I am taking verapamil and have recently tried ergotamine with caffeine which took away the pain but made me feel horrible in return. These things are ruining my life but I am stubborn and am determined to get all the information possible in order to help myself. It's frustrating, as you all know, to try and convey to doctors and friends how horrible these things are. Thanks again, Kelly
Kelly <>
Tuesday, June 09, 1998 at 00:23:49 (EDT)

Well, here I am again. I want to say thank you for this wonderful web site. It has really helped me a lot. I feel that I now have my own personal support group. Maybe we have all be at one time abduted by aliens and have a little implant in our heads. When we are in pain maybe we are being reprogramed or maybe the aliens are checking us out to see what we do or do not know. I guess the point I am trying to make is even though these headaches are awful, we must keep our sense of humor or we will never make it. I have had cluster for over seven years, a year remission and in March they have returned. The strike about 4:00 a.m. every night. If I abort them before they are full blown I can make it. If not forget it, nothing seems to help. The only thing I take is Excedrin. Inderal, Cardizem did not work. I had a prescription for Cafergot, which did help abort them but had an allergic reaction to that. My Doctor is skeptical about what to prescribe and really does not understand the pain and intensity that CH cause. I wish there was something out there that would help. For a long time I had relief, it made the pain tolerable at least, by rubbing my forehead, neck and and putting a very small amount in my nose of Zostrex HP. The burning which was caused by placing a wet washcloth on that area helped ease the pain. I used that for a long time because was afraid of the side effects caused by medication. It worked, but now that my headaches have returned it seems to do nothing. Anyway, thank you for this site. Lets not give up hope.
Martha <>
Bridgewater, NJ USA
Monday, June 08, 1998 at 21:03:22 (EDT)

I welcome and am thankful for the creation of this CH site. I have suffered from CHs for 20 years at approx 22 month intervals. I always hope and believe that finally my last cluster is behind me. But, come rain or shine they reappear, intially as a small irritation sort of inside my head. It's like a wriggly worm growing inside my cranium. As the days pass the feeling builds in intensity to agonising proportions. At their maximum intensity I'm writhing on the ground and headbutting doors praying for release from the pain. At this stage if I can manage it I cart myself off to the hospital where flummoxed doctors administer oxygen and, in one blissful instance, injected pethidine. I look forward to conversing with fellow sufferers and seeking a dependable cure or, at least alleviant for this dreadful malady. Thank you for the opportunity to share with fellow sufferers.
Ross Yates <>
Sydney, n Australia
Monday, June 08, 1998 at 08:55:54 (EDT)

**THANKS** The site is great. Last week I did not know what a cluster was, but I knew what they felt like. Now I probably know more about them than some doctors. Thanks for the info!!!!!!!
Gene Jackson <>
Atlanta, GA USA
Sunday, June 07, 1998 at 12:34:28 (EDT)

I have cluster headaches, it was amazing seeing how many other people suffer with this, and also very helpful knowing that I am not alone. Maybe we should all put our own data together and see if we can come up with a link. The pain is awful, it makes our lives at times unbearable. I once read where this headache is also called a suicide headache, and at times I have felt that it was the best way out. Medication does not help, only makes the pain tolerable. We have all heard this before, and my hurt breaks for all of us who have this pain and sometimes we are made to feel that the problem is us and the pain is not that bad. Sometimes I wish I could pull the pain from my head and inject it into the person who will say "headache...take a couple of aspirins...can't be that bad!" I'm really happy though that I have found a place to "talk" with others who have this. "Misery Loves Company"
Martha <mom13!>
Bridgewater, NJ USA
Saturday, June 06, 1998 at 17:45:18 (EDT)

I have been suffering for 10 years now. Last amazingly i did not get my clusters which hit every 13 months and last for about 33 days (wierd). Oxygen helps on the first week or two but then then the big daddy's come rolling in and last longer and hurt like *%$#$% up until the grand finale week and that one mutha of all clusters hits me and i'm rolling in a ball of pain heading towards the emergency room (7 years staright i have gone, and they don't do sh_t.). Year before last i tried imitrex on probably was my last cluster for that year and it seemed to work but im not sure. These clusters have come back and just wanted to know what is the latest and greatest drug out there is? thanx i feel for u all.....
Robert Spence <>
Friday, June 05, 1998 at 22:17:54 (EDT)

I am 39 yrs old and I have been CH sufferer for 20 years. Have gone as long as 6 years without episode. Currently in the worst episode ever going on the 8th week. I have been on steroids which helped while taking but as soon as I stopped the headaches returned. Dr. prescribed Amerge which is a migraine drug and is supposd to be taken only when you have a headache. I have been taking them (2.5mg pill)twice a day whether I have a headache or not and it has been effective. The only problem is my blood pressure has gone though the roof (161 over 100) so that when I get a headache they are miserable. I also have tried Imitrix nasal spray and Migranal nasal spray which do the same thing as Amerge but can be used as an "abortive" treatment. I am worried about the long term side effects of these drugs and for that matter the short term side effects due to my high blood pressure. Now I am having to take a pill twice a day to lower my blood pressure. Has anyone had any experience with these drugs. Also, would like to hear of any ideas for alternatives. Great site. Good luck to all.
Bobby Fogle <>
Plano, TX USA
Thursday, June 04, 1998 at 18:47:15 (EDT)

It fuckin hurts
Frank Wyles <>
Port Stanley, on can
Thursday, June 04, 1998 at 18:05:40 (EDT)

I've been suffering from CH (HORTON SYNDROM) since 8 years with clusters every two years, always in spring when days get longer and there is more daylight. For an instant cut of an attack i use CAFERGOT(ergotamines). After the first attack of a cluster I use MANIPREX 250mg. 3 to 4 a day to prevent more attacks. Up to now it is the most effective drug to prevent. Mostly after 1 or 2 attacks I can keep the rest away. I still feel the attacks are trying to start but they don't get really through. After two or three weeks without any attack I quit all drugs. I hope this can be of any help for you. Good site!!
Herwig MARIĖN <>
Thursday, June 04, 1998 at 16:04:07 (EDT)

In a diving accident I fractured C1 ever since I have suffered from what Doctors say are clusters.Any pressure in my head such as coughing, sneezing,etc. cause extreme pain that last for aminute or so.My ears clog up and see bright flashs which corrspond with my pulse.looking for more info.
Joey Raybon <>
opp, al USA
Thursday, June 04, 1998 at 11:34:30 (EDT)

I am currently 5 weeks into my second episode of cluster headaches. This time I was finally diagnosed correctly. I have been given a drug called Tegretol to take 3 times a day. It is an anti-seizure drug that my neuologist said is currently being used to treat ch. The problem is that I never hear of anyone else using this drug? I would love to hear from anyone else with experience taking this. I am up to three pills a day, experiencing a lot of side effects but it has been over 24 hrs. without a ch. I just wish my Mother would stop telling me it is probably a sinus infection :)
Alexandria, VA USA
Wednesday, June 03, 1998 at 13:28:01 (EDT)

I started suffering from Cluster Headaches 2 years ago at the age of 40. I am now going thru my second ordeal with the headaches and I have yet to find something that helps.
Bob Berberich <>
Poughkeepsie, NY USA
Wednesday, June 03, 1998 at 08:43:15 (EDT)

At least now they know that women can have these! I have the by the book symptoms of clusters,and even had them "almost" diagnosed several times by docs who said "but women have classic migraines, men have clusters". For 25 yrs., have tried everything, finally tried the Imitrex injection. Picture this, me with my oxygen bottle, my MD mom next to me to make sure I didn't go into cardiac arrest, taking my first Imitrex injection. I felt the rush, it went away, the headache seemed to get worse, and I begged Mom to take me to the ER. There, the nurses said "try it again, and give it a chance to work". I tried to relax and remember Mom's advice "Listen to ER nurses, they usually know what works, and they're really excited about this Imitrex." It worked, and it has worked within 12 minutes of onset of a headache ever since. I even stopped taking the prednisone to shut down the frequency, since I find I can take Imitrex frequently for several months and I'm O.K. A couple of cautions: It is definately heat sensitive. An injection that has been in my purse or through baggage on plane in a hot climate loses efficacy FAST. Second, the pills take a long time to absorb and can be thrown up, so the shots are fast and more effective. Good luck to all. Headache trivia: The Dr. in Los Angeles who pioneered the O2 treatment is Dr. Kudrow. When I went to see him, his daughter took my history. When I asked Dr Kudrow about her, he said, Oh, she wants to be an actress...Yup, Lisa Kudrow, she made it! Good luck to all.
Wendy McGuire <>
Coronado, CA USA
Tuesday, June 02, 1998 at 22:15:34 (EDT)

Hi.I'm 34 yrs old.Clusters started last October,2 weeks after arriving in America.After initial sinus infection diagnosis and MRI scan,I was fortunately diagnosed after a few painful weeks.Verapimil helped followed by prednisone which seemed to eliminate the excruciating pain.Have since had what I could best describe as chronic shadow clusters.Daily headaces up to about a No.4 with tearing eye and pain in jaw.Now on week 5 of the candida diet after 3 weeks on Lamisil.Definately feeling better,though not cured.Difficult to know if it's a gradual tapering off of a lengthy episode,prolonged use of feverfew,or the yeast connection ? Will keep you posted.Thanks for the site,it's compulsive.
BigYin <>
Tuesday, June 02, 1998 at 22:09:52 (EDT)

Hi, my family doctor referred my to an ENT two weeks ago and he diagosed me as a sufferer of Cluster Headaches. This is my first episode and it has been going on now for about a month. I have an appointment with a nurologist (sp) next week. The ENT gave me ergomar, which helps in some cases, but I am hoping to get something else. I checked on this site, because I wanted to learn as much as can about this crazy condition.. My goodness they hurt. Thanks for maintaining this site. Chuck Spence
Chuck Spence <>
Point of Rocks, MD USA
Tuesday, June 02, 1998 at 19:12:15 (EDT)

Im am 19 years old suffering from migraine headaches my doctors retired now therefore i am without my medication and no one now wants to perscribe it.I feel helpless and dont know what to do.the medication is stadol ns.please reply with any info or suggestions asap. thanks and God bless.
Kyle P <>
Dallas, TX USA
Tuesday, June 02, 1998 at 17:32:23 (EDT)

I am a 41-year-old man who has suffered with 'clusters' for 18 years.
Jeff Poitinger <>
Houston, TX USA
Tuesday, June 02, 1998 at 16:46:07 (EDT)

I have had the good fortune to have clusters for the past 30 years. They began for me while serving in an infantry unit in Viet Nam. Imagine the joy of a filthy rat infested firebase with temperatures in the 100's and the "bad guys" coming at us every chance they could. I would suffer 3 per meds..they would get so bad I would actually feel glad when they reached the point where I might dry heave since that would represent the apex of the pain and I might then escape the pain for a few hours. I thought they were stress and just gutted them out for the month or month and 1/2 they were on me. When they stopped the war never bothered me that much at the time or since because when the headaches left it was such a treat to do the day to day conflict without headaches. Talk about thanks for small favors! As I look back I realize that I would not give into them because I thought they were stress and I didn't want to "punk out". Meds have never worked very well for me...I use Percocet and wonderful o2. Not perfect since I haven't slept for a few days with the headaches jumping on me as soon as I drift off...but that's life. There have been so many I have a perverse rememberance of particularly brutal episodes when the pain was so acute it sent a shiver or chill down my spine and the thought that it was hard to believe that anything could create that much pain and leave a person alive. What a world...the rest of them should never have to do the pain we have to would not think a person could endure it...but you can if you have to.
Dick Droney <>
Fayetteville, NC USA
Tuesday, June 02, 1998 at 12:42:41 (EDT)





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