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

Click Here to go back to the Main Guestbook

Hi there, im a 29 year old male who has been suffering for eleven years. This year was my first in remission, until about 2-3 weeks ago. The devil has changed sides, the pain is slightly different. no more ice pick, now i have a burning/searing type of pain (about 4-8 kip) but they last for up to 20 hours. I'm at a loss. nothing seems to work. my doctor was sympathetic to C H but she has now left the sugery. I have explained to my new doctor & even given him our site address but he doesn't seem to want to know. i'm in the process of changing doctors. If there is anyone in the u.k who is in the same boat, lets hook up & swap ideas. My girlfriend uses this site for support, i feel so sorry for her as there is nothing she can do except prevent me from injuring myself when the pain is too much. Thank you all for your time & support i wouldn't be able to cope without you. Steve
Steve <steveskank@hotmail.com>
Banbury, oxfordshire, UK
Thursday, June 29, 2000 at 21:41:45 (EDT)

I'm 40 years old and started my first CH on January, they were mild and spaciated and 6 weeks ago they started really strong and daily. Sometimes even my jaw and teeth hurt, one time the pain went all the way to my shoulder and left arm. I thought it was a heart attack. I have not started in heavy med because I have read of the side effects and rebound headaches with prevention. TV is a trigger also PepsiMax, I think Pepsi started all this. Jogging helps, but getting angry really triggers very bad CH. I have heard homeopatic medicine works I could like some feedback on this.
Juan Carlos Martin <juanc@actiongraphix.com>
Queretaro, Qro Mexico
Thursday, June 29, 2000 at 20:29:40 (EDT)

I have had clusters now for 9 years. I am so glad to have found this site. Just reading some of the postings has helped in a way I can't really express. I want to thank everyone for the help that I received today just by reading.
Barry Budzynski <barrybhfs@aol.com>
Park Ridge, IL USA
Thursday, June 29, 2000 at 19:18:38 (EDT)

I've had this thing for 5 years(+1 for diagnosis).I use oxygen,accupuncture,osteopathy,strong painkillers,and now Sumatriptan;all help a bit,none works perfectly.the site is interesting, especially the medical info;some of the obsessiveness is hard for me to take,iwant to be more thana headache,but it's good to know i'm not alone.
Tony Greene <Tony.Greene@dial.pipex.com>
London, UK
Thursday, June 29, 2000 at 18:40:58 (EDT)

I am estatic about this site....
Gina Scappaticci <ginascap@aol.com>
Ann Arbor, MI USA
Thursday, June 29, 2000 at 12:05:46 (EDT)

I was describing my headaches to a friend of mine who's in medical school today, and he asked me a few questions my neurologist and PCP had not: Did my nose run during the pain? Did my headaches only occur on one side? Do I have periods of 'remission.' He thought it was worth investigating clusters. Perhaps my doctors had failed to suggest this because I'm female. I have suffered from chronic tension headaches for a few years, at many point I have been debilitated by them. In December of 1998 I was fortunate enough to have been diagnosed with an UNRUPTURED cerebral aneurysm which was repaired succesfully the next month. In May of that year my headaches began to increase in severity and I experienced the first of what I assumed must be migraines. I was seen by a neurologist, who prescribed Maxalt, although her description of 'migraines' did not match my experience. She thought mine might just be atypical. Over the course of the past year I have seen orthopedists (searing eye pain is associated with disturbances in the alignment of the neck), acupuncturists, etc. I have even been, I believe erroneously, diagnosed with fibromyalgia. I still suffer chronic tension headaches and residual swelling and pain on my right side from the surgery. No one, however, could explain these other headaches which I felt were not totally related to my normal patterns. People just didn't understand how I could wake at night knowing that in about ten minutes I would feel like I had an ice pick stabbing in my eye and jaw, feel my eyelid droop, how I would writhe on the bed sobbing, unable to be still, my heartrate would increase, how light and sound didn't bother me as they were so completely overshadowed by the agony of what was going on on the left side of my head and face. I haven't had one of these headaches in about 2 or three months, and if I had to guess I would say I can think of two semi-distinct periods in which they occurred over the past year. However, it never occurred to me to recognize seasonal patterns, nor record the frequency of my attacks. But I will say that logging on to this site has been very emotional for me, and I have been teary reading the various accounts. After brain surgery and headaches of one variety or another every day, I cannot believe I'm reading words that other people wrote that mirror how I have felt during my worst headaches. I can't say I'm glad, but part of me is relieved, and I will be phoning my doctor in the morning. If I do indeed share this headache pattern, well, I'm only glad there is a place like this for me to go. Thank you to whoever created this site.
Elizabeth <Sullivan>
USA
Wednesday, June 28, 2000 at 01:03:21 (EDT)

I have a 4 yr old son that is suffering from CH. We are currently going through our second "CLUSTER". His first occured about 6 months ago. Friday was a week ago, they reoccured. He has had 8 BIG ONES since then. I would love to hear from someone with a young child that is going through CH's. We went to the nero doc yesterday. He doesn't want to give him anything on a daily basis because he had such long time span between the clusters. He can't tell me when one is coming on......so its kinda diffcult to do anything until its full blown. He gave him Imitrex nasal spray. I am not sure how he is gonna handle that. I guess I have siad enough for now......will look forward to hearing from you
Sherri Owens <leandria@alaweb.com>
Andalusia, AL USA
Tuesday, June 27, 2000 at 23:45:32 (EDT)

Well, here I am. I have often visited this site for silent support when I needed it and have finally decided to move in. I am an active duty Marine and a fellow CH sufferer for two years. My CH's run from June to Oct, peeking to 3 or 4 a day in Aug. Naval Medicine (God bless its well intending soul) has me on Cafergot. Last year I was handed a three week steroid burst of Prednisone which did in fact help but had unfortunate side effects that complicate things in the face of strict weight standards. This year I decided "no prednisone for me"! Last night while the mortars were exploding in my head I decided "prednisone is the better part of valor"! So I find myself today on another steroid burst struggling to explain to some very skeptical SNCOs how a headache can be debillitating. Thank God I can get some empathy somewhere. See you in the posts!
Jason Hutchins <jasondhutchins@hotmail.com>
MCAS Cherry Point, NC USA
Tuesday, June 27, 2000 at 15:02:26 (EDT)

Pleased to see this site! I'll be back! I've had CH since age 15 but was never properly diagnosed until age 32. Kudo's to Dr. Joeseph Casaly for the relief. I now get a year or 2 between cycles and take Lithium when they start up. It works so well I have to stop taking it just to see if the headaches are gone yet or not. Prednisone never really helped at all and Verapmil made my heart beat so slowly that I was afraid to keep taking it. I feel your pain. Hang in there.
John Brunson <jbrunson@mwmicro.com>
Fletcher, OH USA
Tuesday, June 27, 2000 at 11:17:50 (EDT)

Hi fellow mind numbing pain friends..:)One thing that I have found helpful, in conjunction with imperical Verapamil and Imitrex for acute attacks , has been the near elimination of Tyramine products in my diet.....that is ...no aged , preserved, artificial or "added to" foods...this is a lot but my goodness it has helped. To be specific...no pickled products, no beer, wine,yogurt, aged cheeses or meats, like sausage, no artificial sweeteners(I miss my diet Pepsi)and no nuts. This seems like a lot but it isn't too bad, considering the humomgous benefits...good luck. Scientific research has clearly connected tyramine to migraine and cluster headaches...it builds up over time, and then when your body tissues hold doses that are "toxic" to you it decreases the oxygen to your brain, your blood vessels then dilate to get more blood in, and BAM..you have a monster of a headache....see if it helps, I hope it does.
Sarah
USA
Monday, June 26, 2000 at 22:07:56 (EDT)

Thank you! This has been my dream for years (30 year sufferer)that info could be shared. I have tried it all (accupuncture, biofeedback, drugs, oxygen, therapy, etc.). After years of research I find that many of the treatments produce rebound effects. After a 2 year pause the Devil is back. I have been on Verapamil for 6 years for SVT and I do believe it has helped lengthen the time between bouts. Right now I am using Prednisone, but we all know that the Doctors don't like to use it long term. My norm is 12 weeks of agony. Time to wipe away my tears and drag my tired butt to work. Thanks for being here. I will be back.
Sue Huston <hustonphx@msn.com>
Phoenix, AZ USA
Monday, June 26, 2000 at 11:31:34 (EDT)

I'm 18 years old and was recently diagnosed as a sufferer of 'Cluster' headaches. I say diagnosed, but in reality, my doctor has no idea what they even are. However, my father does having been a sufferer for over 20 years. I cannot explain the pain I deal with nor would I want to, and it's depressing to see that so many other people live with the same pain. My doctor has me on so many meds I can't say whether I'm coming or going. None of my friends or roomates understand; they just tell me to take my medication. The pain killers(fiorinal w/codeine) do not even come close to touching the pain. I guess I'm really just looking for some sort of support.
Karissa <karizwa@netscape.net>
Houston, TX USA
Sunday, June 25, 2000 at 23:32:57 (EDT)

I found this site in August of 1999 after coming home from the Doctor with my new diagnosis of CH that scared me to death. I thought that it really couldn't be as bad as my Doctor described and logged onto the net, found you guys and realized he had totally sugar coated it - it was MUCH worse. I'm writting today to find out what anyone knows about chiropractic treatments helping/preventing attacks. (I have an aquaintance that swears he has "cured" CH sufferers) I have tried way to many drugs for my comfort level but I'm at a loss. I started having what was diagnosed at an urgent care center as chronic pinkeye a little over ten years ago. As you can imagine to be told this horrific pain you are experiencing is a child's common illness and what kind a wuss are you that you can't tolerate it, does wonders to your psyche. So I never went back and just kicked myself around for being a wimp. Last year I was finally pushed (actually threatened with bodily harm) from a friend who is a phsician to see a doctor about it. Within a few minutes of being in his office I was diagnosed and given prednisone to try on a short term regimen. It was incredible! Within two hours all redness in my eye, distortion in my face was gone and most importantly my brain was silent. But alas now the prednisone only takes the redness and the horrific pain away, but leaves a "bad" headache (shadow?) that will still go on for four to six weeks. Verapamil makes me a puddle on the floor even on the lowest dosage and the painkillers just aren't a daily option for me. Any help I could get from you guys would be much appreciated!
Lisha <mlastorga@aol.com>
Palm Springs, CA USA
Sunday, June 25, 2000 at 15:56:49 (EDT)

I am new to the BEAST, I am 42,male,realitivly good health,i have been suffering #8 + 9's about 3 month's I am so glad ( yet depressed ) that I found this site, it is great comfort. I feel depressed to find out how hard it is to beat or to get relief. But maybe I'll learn how type better while I'm here. NOT!!!
Steve <sdunn44302@aol.com>
dickson , tn USA
Sunday, June 25, 2000 at 10:11:51 (EDT)

I've had cluster headaches 35 years now. I use oxygen primarily for their relief. Recently started a new episode after being headached free for 2.5 years. Depressing. It's interfering with my exercise (hiking) activities mostly. I've gotten so that I prefer they come in the night-easiest to deal with. so glad to find this site.
kate sirkin <katesirkin@hotmail.com>
Idyllwild, CA USA
Saturday, June 24, 2000 at 15:50:38 (EDT)

im now a steroidhead - can anyone tell me about their experience with long term prednisone use
MIKE <RETNMYK@AOL.COM>
OTSEGO, MI USA
Friday, June 23, 2000 at 19:14:39 (EDT)

I feel lucky to have found this site. I've been reading for about an hour....hope it doesn't make my CHs worse tonight!!!I'm going to try the water treatment...nothing else is working.
Terry Bowman <bogolf50 @AOL.com>
Louisville, KY USA
Thursday, June 22, 2000 at 21:31:17 (EDT)

Suffered from clusters for 40 years. Have learned a thing or two about them.
Charles Martin <OSEmartin@aol.com>
Overland park, KS USA
Thursday, June 22, 2000 at 15:34:38 (EDT)

I was scanning through the messages today, and noticed someone asking about long term prednisone usage. My boyfriend has been a chronic sufferer for at least 10 years now. He has tried all the common treatments, including the surgery. The left side of his face is numbed permanently, but the headaches continued. The only thing that keeps them to a minimum has been prednisone. He usually takes 40 miligrams a day, that keeps them to a minimum, and has for 5 or six years now. The side effects are terrible. I know the stuff is slowly killing him, but the alternative is unthinkable. We just keep looking, and trying everything that comes up (many of our latest experiments have come from this site). So far no luck finding a safer alternative to the prednisone. I hate the stuff for what it is doing to him, but I realize that without it, he probably would have killed himself long ago.
julie
me USA
Thursday, June 22, 2000 at 12:27:44 (EDT)

Homeopathy - It (and a good doctor) have been a God-send for me. Just like Linda S., (several messages below), I have been reading at this site for hours and have barely "scratched the surface". I am a 50 year old male. I had migrains for ten years, then no headaches for the next ten years, and now I have had clusters for the past ten years. They began as episodic (6 weeks each 6 months) and evolved into Chronic within the first 2-4 years. After they became Chonic, I have had very few months without clusters, until 18 months ago. Like everyone else, I have been to Neurologists, including a Head Pain Treatment Center, and like everyone else I have tried about 75% of all known medicines to prevent Clusters. The only two medicines that ever did anything for me were Cafergot (to abort the episode) and prednisone, which only lasted for a few days. Since prednisone has potential serious side effects, long term usage did not seem to be appropriate. Even with "head banging" clusters lasting 2-4 hours, nearly every night for months on end, there had to be something better (and safer) than prednisone. While researching the alternatives, acupuncture included, I was referred to an MD who specializes in Homeopathy and has had great success with both migraines and clusters. In all my days of going to Neurologists (and doctors in general) I have never had a doctor's appointment like the one with the Homeopathic specialist. Rather than being a "number" in a large medical clinic, where they push you in and out as fast as possible, I was actually given a "medical interview" that lasted nearly 90 minutes. She (the Nurse Practitioner who works for the doctor) walked into the examining room with three big books. She asked a question, received an answer, flipped a few pages then asked another question. Each new question seemed to be dependant on the answer to the previous. When the interview was done she said she had 3 different things that would possibly help me, but one specific item was definately the "front runner" for my case. Evidently with most Homeopathic remedies, the results are not immediate, nor are the "medicines" expensive. My remedy cost about $6. She told me it could take about 60 days to take effect, and it took about 50. When the Clusters stopped, they stopped completely for nine months, then started again. (Nine cluster free months is something I had not experienced for years.) When they started again, she gave me a slight derivation of the same thing, with similar results. It took about 30 days for the clusters to stop, and they have been gone again for 6-7 months. Life is worth living again. As with all professions, I'm sure there are "quack" homeopothy doctors out there, but she is not one of them. She has given me permission to put her name and location on line, but I thought I would see what type of response this message gets, let her know, and let her reconsider if she would care to. If you would like her name and number, please send me a note.
Dennis Olson <dolson@storycity.net>
Story City, IA USA
Wednesday, June 21, 2000 at 20:39:33 (EDT)

just saying hi to everyone.I'm back cause it's back,been in remission for18 months and driving home yesterday i started getting that all to familiar feeling,so i knew i had my Imitrex at home (it's funny how people seem to know your ina hurry and start slowing down.)well anyway made it home did my dose went into my bedroom ,no lights,or sounds,and in 20mins.I'm a new man again.
Tom Heilman <tanddheilman@HOME>
el cajon, ca USA
Wednesday, June 21, 2000 at 18:03:41 (EDT)

Headaches so bad now, been on Lithium for some time but appears to have stopped working altogether - don't know why - it was great no headaches and could have a beer - but all that is history once again. Headaches back every day - 2 to 3 attacks during the day and 3 to 4 every night, get about 2 hours sleep at night - am totally exhausted. Went to see Consultant at Harley St again today - knew what he was going to say "try something else" - I suppose thats all they can come up with. He has put me on steroids - Prednisolone - not happy about taking these but what the hell try anything. My holiday is coming up in about 4 weeks time and am dreading it, if I am still suffering every day I would rather not go. My wife is fed up with seeing me hold my head and kneeling on the floor, not fed up with me but the whole damn thing its just a living nightmare that won't go away. Has anybody out there tried Prednisolone steroids??? if so could they e-mail me with any adverse reactions (or good ones!!!). By the way did anybody suffer from hayfever before they got the clusters? I used to suffer badly from hayfever and then I took anti-histamine tablets - the hayfever went and the headaches came - I have never had hayfever since (interesting!!!) GOD I WOULD GIVE ANYTHING TO HAVE MY HAYFEVER BACK PLEASE.
Robert Goodwin <pearlsbob@sible1.fsnet.co.uk>
Essex, UK UK
Wednesday, June 21, 2000 at 11:26:47 (EDT)

I need help
litaozhou <litaozhou@sina.com.cn>
beijin, beijin china
Tuesday, June 20, 2000 at 21:37:27 (EDT)

Excellent site that tries to educate and inform about this terrible condition. I have suffered with it for 9 years now and I am sick and tired of it!
Mark Waple <dylan.waple.co.uk>
Salisbury, Wilts UK
Tuesday, June 20, 2000 at 13:05:59 (EDT)

I can't believe I found this web site. I have searched for years to find someone who understands what I am going through. I've been a clusterhead for 16 years, seen 15 different doctors, been on 28 different meds, and traveled around the country, but this is the best information that I have ever found. Thank you for being here.
Steve Kingsmore <smkimo@gulftel.com>
Robertsdale, AL USA
Tuesday, June 20, 2000 at 02:19:46 (EDT)

I just want to say thanks for the site.Im 35 years old and have been suffering for over 13 years.It's been HELL!I finally lost my job of 10 years because of my condition, and presently haven't worked for 3 years.I succesfuly sued my former employer,and have been trying to get social security benifits for 21/2 years,unsuccesfuly!Ihave been to some of the best places in the country to be there guinny pig with there MANY combinations of drugs.All with side effects or little help,oh ya,they did have me strung out on opiates,synthetic heroin for 2 awfull years.I finally put myself in detox to get off from that,THANK YOU!Im now about out off money,and my headaches are as bad as ever.I've worked hard since I was 12,have a nice home,some nice TOYS, and now im close to loosing about all of it.My only hope is the SSI disability.My attorney says he beleives the problem is my AGE!I feel like Im 65!!!!!
Brian Huyser <sbhuyser@ionline.com>
Holland, MI. USA
Monday, June 19, 2000 at 19:12:38 (EDT)

Well I've had these headaches for about 15yrs now I've seen many doctors some said I had Migrains,sinus problems,a bad tooth ect. And a few years ago one said I had clusters but when he diagnosed me it was on the down side of the cycle so I just blew it off thinking finally they was gone for good Sooooo wrong about a year later they was back and stronger than ever. I finally found this site and checked it out that's when I finally realized I have clusters.I saw many people with the exact same symptoms I have. It was like they was living my very life.I can't understand why doctors don't want to diagnose clusters the symptoms from what I've seen on your site are exactly the same.Is it because they don't fully understand clusters so they don't even go there.I'm just so glad the good lord above led me too this site.I know there's! no cure but maybe I can at least find some comfort from the devil when he comes from the friends on this site.Thankyou so very much for being here!!
Mike Myers <myers@westco.net>
USA
Sunday, June 18, 2000 at 23:49:42 (EDT)

CH's? NO ONE has a CLUE how BAD they are. Docs...NOBODY! That's a big problem.
Linda <Hale-n@webtv.net>
St Louis, Mo USA
Sunday, June 18, 2000 at 09:54:42 (EDT)

great site..My boyfriend has been suffering for more then 20 years ..as I write this ..he's in the bedroom having one now...he was up at 2am 4am..now it's 6:30 in the morning and he's having another one...They go away for 2 years at a time..then they come back...He even flew out to the dimond headace clinc 15 years ago ....but nothing has ever helped him...tried all the new medication..Still nothing....Well he's in the middle of his cycle,and thier pretty bad right now. I just hope they will be gone in another month or so...and he'll be pain free for another couple of years.
Carlene George <imoose@ime.net>
me USA
Sunday, June 18, 2000 at 07:39:58 (EDT)

It's nice to know you're not alone. Thanks for all of the wonderful data.
Steve <soneals@netscape.net>
Georgetown, TX USA
Saturday, June 17, 2000 at 11:06:52 (EDT)

I'm not crazy! What a relief to find all this great CH info! I want to print it all out and hand out to everyone I see to show them what I am going through! Great web site, great links.
Lori Howard <lhoward@goes.com>
Blairstown, NJ USA
Saturday, June 17, 2000 at 02:50:40 (EDT)

Greetings and health to those dealing with the demon pain. I started feeling the fire of these blasted things in 1991, while I was serving a prison sentence. One day, out of the blue, the first one happened, and I thought for sure the right side of my head was on fire. The prison doctors, of course, didn't have the foggiest clue why the pain was on me. Cluster headaches weren't really classified in the prison system, here, at the time. It was horrible. At first, they were periodic. The cycles hit every other month or so, and the attacks would happen 3 - 4 times a day on average. But, now, I'm classified as having the chronic version, with 6 - 8 attacks a day. I've lost any normalcy in life because of the pain and frequency of these. I can't hold down a job for any length of time, because, everytime I get one, it means at least a half hour to three hours of agony where there is no possible way of concentrating enough to do any task I'm put to. I hate my life, because of this debilitation. I feel like I'm cursed. I'm afraid to try and sleep at nights (or any time for that matter) because I know that soon after I close my eyes- an attack will come again and I'll be,...wishing the damn things would just kill me and get it over with. Medications I've tried? Amitryptaline, Litium, advil, Tylenol, Ibuprofen, Zomig, Aspirin, Excedrin Migraine, Relafin, and for a time I was even placed on an "imperical treatment" of Verapamil and Indocin mixed (which did decrease the frequency of the attacks, but for some reason made them last over two hours each time they would hit). I don't know what to do, now, to deal with this. I'm not employed, and thusly, don't have any insurance to fall back on for medical treatment. I'm back to buying Ibuprofen over the counter, but I think my body is adjusting to it again, because they don't do much to ease the pain at all anymore. Maybe, now that I've found this family of other people who suffer as I do, I'll be able to talk about it at least. This is my first "post" of any kind about my demon-pain. Thank you all for this place. And for those that feel the fire? You are not, (stress "not"), alone.
Frederick L. Stanley <archheart@AOL.com>
Tucson, AZ USA
Friday, June 16, 2000 at 17:21:55 (EDT)

I've been a cluster headache sufferer for 13 years but was only diagnosed with it 3 years ago! I'm looking for other CH sufferers from Switzerland who could help me find treatment.Thanks!
Jacqueline Sonderegger <sondi@ggaweb.ch>
Egg, ZH Switzerland
Friday, June 16, 2000 at 13:50:36 (EDT)

I am so relieved to find out I am not the only one in the world with this problem. After reading some of the comments, I feel I must be pretty lucky. I only get two to three headaches a day during a cycle, and except for rare occasions, such as last night, one or two cafergot will quell them after about 30 minutes. I must admit I am not man enough to try to let the thing run its course without meds. It just hurts too much. Imust also thank my loving and supportive wife for forcing me to see a Dr. a couple of years ago, and putting up with my daily attacks when I am in a cycle. And I would like to thank everyone here just for being here. Now I know I can talk to someone who knows what I am going through.
Steve Genia <mcgenia@yahoo.com>
ST. Marys, ga USA
Friday, June 16, 2000 at 13:41:40 (EDT)

I have just came home from the hospital with the diagnosis of cluster headaches (I have been in pain for 21/2 weeks). I was given a shot of Imitrex and had such a bad reaction that I am now going to see a cardiologist. Isn't there something that can help the headaches without nearly killing you in the process? I've been sent home with a beta blocker and Zomig and right now the headache is mild considering what I was experiencing. I am glad to find this site!! It's nice to know your not alone. Pat
Pat Winney <patcraig@postnet.com>
st. Louis, mo USA
Thursday, June 15, 2000 at 23:51:24 (EDT)

I am a week into my second experience with clusters. The last round was 5 years ago when I lived in Austin. After several doctors and even more prescriptions, a nurse suggested I try oxygen. How incredibly it worked. I wish I had know sooner before I missed a month a work and suffered so many excrutiatingly painful nights. This time, however, I have no insurance and have been unable to find a source for portable oxygen tanks. My doctor told me it was extremely expensive. I'm still searching--wish me luck.
Jan Fowler <avon77598@yahoo.com>
Seabrook, TX USA
Thursday, June 15, 2000 at 16:04:16 (EDT)

I have suffered with migraines ever since iwas 13 years old and I am now 43 years old. I am always praying for new info. Its good to know that someone out there understands how devestating these things are. Sincerely, Brenda
Brenda <Brenda_LaPrairie@excite.com>
Perry, Ga. USA
Thursday, June 15, 2000 at 14:47:09 (EDT)

Hi Everyone, I've been reading the information on this site for hours. I felt like crying, I've been getting cluster headaches since I was 13 (I'm now 29 for four years) and no-one could ever understand what I was going through. I even have a hard time with my doctor because he obviously has never had to deal with that pain, but you know how it goes. I've been lucky enough not to have had them for two years so I knew my time was up and sure enough, been getting them for three weeks now....I'm so tired! They are getting really bad and I've been looking for some kind of relief, any suggestions feel free to e-mail me! Hot tea seems to help a little if I drink it before it peaks. I will get through it, I always do but it's good to know that I'm not alone! I'm sorry you all have to be in the same club though, I wouldn't wish it on anyone.
Linda S. <CtCheffie@aol.com>
Danbury, CT USA
Thursday, June 15, 2000 at 11:47:12 (EDT)

Just checkin' back in 'cause my e-mail address has changed and I want to be sure to receive any future updates.
T. Taylor <T_Taylor9@hotmail.com>
Waterloo, ON Canada
Wednesday, June 14, 2000 at 21:07:14 (EDT)

I'm female, 38 years old, diagnosed with cluster headaches for the first time about 5 weeks ago. No history of headaches or migraine. Head trauma 5 years ago, brief loss of consciousness & concussion. Imitrex not useful. DHE nasal spray effective if taken at first sign of headache. Demerol/Promethazine effective for pain, but side effects prohibit taking it during working hours. Have been unable to find a food or drink trigger. Great website! From what I've read, hopefully these episodic cluster headaches will go away on their own soon. :)
Andrea <savepianet@aol.com>
Dayton, TN USA
Wednesday, June 14, 2000 at 20:24:40 (EDT)

To all who will help - My sister is currently in the midst of being diagnosed with ch. She gets a pain in the back of the neck area prior (sometime a few weeks prior)then a dibilitating headache. It is so painful that she actually loses consciousness. This is very hard for us to watch. She just started on Imitrex pills. Please anthing that we can do to help? Any suggestions would be greatly appreciated. Thanks, Kelly
Kelly <kstubie@aol.com>
Mtnside, Nj USA
Wednesday, June 14, 2000 at 19:47:41 (EDT)

My husband Jim has been getting clusters since his late teens. He is now 53 and going thru a bout now. I never knew what they were until he had a bout at Happy Hour when we first started dating. By the time we got to the parking lot, he was nauseous, dry yeaving, and moaning like I've never heard anyone do before. He had only had 1/2 of beer. He's a large, man's man, and I couldn't believe what I was experiencing. This was 6 years ago, and I'm still searching for his cure. He's been to Mayos, Diamond Headache clinic, etc. He was diagnosed correctly years ago, but still looking for the cure. He carries shots of diheroegotamine (sp??) and he takes once immediately upon the onset. He than lays down, covers his eyes and usually can sleep it off, so I guess he's somewhat lucky. They last about 6 weeks and has been in remission for about 2 years now. However, when he doesn't get the headaches, he gets bad hives/wheels all over his body. He has a histamine problem. He's also a Class A personality and a workaholic. He also likes his bud lite. (when not having CH's) He took a RAST test today with a new dr for alergies/histamine problem. Hopefully, we'll find his allergy that may produce his histamine problem. He's been as high as the Level 8 on the scale. He also has the highest pain level tolerance I have ever seen. I know I couldn't handle it like he does. I feel that I am more obsessed in finding the cure than he is; however, after 30 years of him dealing with it, I think he just accepts it.
Jim and Kelli Agles <agles@capecoralhome.com>
Cape Coral, fl USA
Wednesday, June 14, 2000 at 18:49:41 (EDT)

Female, 24-year sufferer. At it again. Never had one doc say the phrase, "Cluster headache" when I've described my symptoms.
Mary Offutt <maryo@hypernet.com>
Deer Isle, Maine USA
Wednesday, June 14, 2000 at 13:07:23 (EDT)

"Dancing with the Devil" What an appropriate phrase to describe what we go through. I have been having cluster headaches since I was 21, though I did not realize that was what it was. I was told it was a sinus infection, though funny how antibiodics did nothing to releave the pressure and pain I felt. They lasted for about4 weeks,in the 3rd. week I was given Sansert, which seemed to help because within a week they were gone. It was another 3 years before I had my second "dance", also lasting about 4 weeks, but this time Sansert was of no help. I went for 7 years with out an episode, but in 1998 they came back with a Vengance. I now get them approx. every 4 to 5 months, lasting anywhere from 4 weeks to 3 months at a time and having them sometimes 8 to 10 times a day. I am in a bout right now, has been a week and I have been sleeping at 2 hour intervals. I have a doctors appointment tomorrow, because last night I was wishing I had more then a BB gun in my closet. I have yet to find a doctor who has a clue. It doesn't help that I have no insurance, so I cannot be too selective. One who will take payments are hard to find. It is so nice to know that there are people who truely "Know exactly how I feel" My husband whom I love dearly can't do anything but try to hold me at night while I cry if its a real painful one, and only once I convinced him to squeeze my temples until I told him it was over. By the time it WAS over he was in tears. It's nice to know someone truely understands. GOD Bless
Vickie Mendoza <VMendoza33@cs.com>
Riverbank, CA USA
Wednesday, June 14, 2000 at 02:56:02 (EDT)

I am so glad to find this site. It turns out this rare affliction isn't so rare at all! I've had clusters since I was a teenager. I tend to get them in the spring and the fall. I once had 3 clusters (about 6 wks. each) in one year, followed by nearly 4 yrs. without one. Yippee, I'm in another one now--going on 6 weeks. They usually peak by wk. 3, but I think I'm just beginning to peak now. I met a woman named Shellie online(diff. site)last fall during a cluster, and if you're out there-I lost your e-mail address, and mine has changed. Write to me if you see this!
nicole <nicole@avalon.net>
ia USA
Wednesday, June 14, 2000 at 02:42:06 (EDT)

I,ve suffered since i was 17, Im now 42 verpamile was perscribed to me when I was 32 and it has worked wonders. The ch still haunt me every day but least there only a fraction of what they used to be. There is a book put out by Pills on headaches (all kinds) which also has alot of information on these ch. I,m sure you know but there is also a surgical procedure that will eliminate the ch forever,(I almost had this done years ago)The only side effect is this will leave half of your face or head numb forever. it's strictly the last resort but it would be better than trying to live with the pain. I also still feel these ch are caused by a infection or somthing to do with a persons sinuses because when my ch started to subside I could feel and here the tremendous pressure being relieved like a valve slowly being opened until the pain was less. I still live in fear that these brainpounders will reappear
Don midgley <DMIDG6@AOL.COM>
TULSA, OK USA
Tuesday, June 13, 2000 at 22:52:36 (EDT)

I have suffered from Cluster Headaches since 1990. They started when I was twenty years old. I currently take Verapamil (Calcium Channel Blocker) It helps after 5 days of dosage.
Tom Hood <thoodele@bellsouth.net>
New Orleans, LA USA
Tuesday, June 13, 2000 at 15:40:44 (EDT)

i have suffered cluster head aches for 8years. i am currently taking verapamil 480mg perday which stops them 95% of the time.
ricky gardiner <ricky.gardiner@libertysurf.co.uk>
eseex, gb great britain
Tuesday, June 13, 2000 at 15:11:09 (EDT)

Im new to the . com world!! But today I spent 6hrs with my daughter at the hospital for her migraine, not the first time,I came on the computer to look for some information and found your site.I just want to say thank you for this,I dont feel so alone.Im a suffererr(lol) myself and now to be able to come here im grateful!
michele <mumstheword222@yahoo.com>
wantagh, ny USA
Tuesday, June 13, 2000 at 00:03:17 (EDT)

I am a newly diagnosed "CH" sufferer. I didn't know what a cluster headache was before today, much less use an acronym for it. All I knew was that I was in terrible, crippling pain. A bit of medical history first. I am 6'6'' and 336 lbs(down 26 lbs. in the past 6 months). I was hospitalized twice with pancretitis (there is no spell check on the board, huh?)...the second time convinced me that if I were going to stay alive I would have to knock the booze...which I've done with the help of a great doctor and my loving wife. I suffer from high blood presure and diabetis as a result of my alcohol abuse. The headaches started about 3 weeks ago, I just chalked it up to allergy season thinking that my sinuses were screwed. The tears squirting out of my left eye weren't from sadness and the blinding pain wasn't enough to make me seek help. I started using sinex, or afrin to clear the sinuses and started eating ibuprofen like tic-tacs. This worked for a while but the attacks came more frequently and with greater intensity. Even as I write this to you I am afraid of another attack tonight as I am out of Ambien and I know I will not sleep. My doc is open minded and into trying new medicines and treatments, being new to the group I feel like a lightweight telling you that my only treatment regimen for now is Prednisone. He wants to see if this will do anything, but apparently I have a whole lifetime of new, interesting drug therapies to look foreward to. I have to say that this whole situation depresses the hell out of me. I want to know when god or whoever will stop punishing me for drinking so much. When does stoppping payoff? How long will it be before I'm well again? I feel like this thing is stalking me, I know that the treatment will probably end this bout sooner than later, but it will always be there.....waiting. I'm not much for whining so thanks for the indulgence. I guess we all have trials and trfibulations in life that we must some how find the courage to face because the alternative is unacceptable. I am going to do what the doctor says, and by keeping up with the info on this board I will challenge him to stay on the cutting edge of treatments and pharmacology. At least it's not brain cancer, I was sure that was what I had. Oh well, small victories my friends. Danny in DC
Danny Torbett <dtorbett@mintz.com>
Washington, DC USA
Monday, June 12, 2000 at 23:17:08 (EDT)

I have had clusterheadaches for over 8 years. Doctors miss diagnosed me for over 3 years. At one time I was haveing up 23 headaches a day, Anyone who hasent had one they just understant what they are.
pat <ww.lofoss1.comm>
Albuquerque , NM USA
Monday, June 12, 2000 at 18:38:26 (EDT)

Terrific! After YEARS of medical professionals not able to figure out "what ails me", I'd given up ever finding information about it. Your site has remarkably accurate information, and it's obvious that a lot of work went into it-- as well as some headaches!! Thank You! Len Rogers
Len Rogers <rrogersjr@ft.newyorklife.com>
West Haven, CT USA
Monday, June 12, 2000 at 12:26:52 (EDT)

You would not believe how happy I am to find this site (actually ya'll may be the only people in the world who would understand how happy I am!). I began having cluster when I was 12 years old and was misdiagnosed until the age of 17.I am currently 37 and still struggling with doctors who do not understand. The loss of the doctor who diagnosed me is a long story. I currently use imatrex because I requested it from my primary care physician. It works more than half of the time for me and I consider it to be a miracle drug as I have never found relief with anything else. I am concerned though with the amount that I am using. I only began taking this drug at the end of my last cycle (March 1999) and I just call in to the company clinic for a renewal of my prescription when it runs out. If anyone could enlighten me on this subject it would be appreciated. I am having a pretty rough time with this cycle and once again I am elated that I have found people who truly understand and that I can share with.
Kim McKenzie <klmckenzie@i-55.com>
Bogalusa, La USA
Monday, June 12, 2000 at 06:53:18 (EDT)

I have headache everyday for most of de day and I keep working because I am a father!!! I always help poeple and now I need help.
norry <brainy86@hotmail.com>
Geertruidenberg, nl
Saturday, June 10, 2000 at 20:57:53 (EDT)

I am a 45 year old male who has been a "clusterhead" since 1985. I do not smoke and no longer drink. My clusters are bad these days (again). I use Imitrex injections as an abortive and methergine as a preventitive (prophylactic). I am currently on a prednisone burst that I requested from my neurologist. Is anyone else out there using Methergine (methylergonovine maleate) as a preventitive? I have been searching on the web for info about cluster headache and the use of Methergine, with no success. I'd really love to hear from any "clusterheads" out there who are using it. I've been using it for about 12 years off and on. It seems to be only preventitive that works for me, but even it fails sometimes, and I think I've tried them all over the years. I worry sometimes about what the long term affects of using this drug will have on me over the years. The drug was originally designed for postpartum bleeding. "Clusterheads, let me know if you are using this!
Emerson Foster <foster_9@hotmail.com>
Columbus, OH USA
Saturday, June 10, 2000 at 20:11:55 (EDT)

Three years ago I was diagnosed with Cluster Head aches. Until today a thought that the diagnosis sounded like a broad term that was basically a cop-out given because they did not understand what was wrong with me. Now, after a couple hours on this site, I realize the Doctors were dead on. Reading the wealth of info and other peoples experiences were almost spooky. It was if I had written the symtom pages. I now now that there is such thing as cluster head aches, and they are well defined. I thank all of you for helping convince me that it is real and I do suffer from them. I have had phenomenal results from PREDNISONE. I see from other post that this is a common treatment, but if you have not tried it-look into it. Thanks to everyone.
William Adams <BLADDUMS@aol.com>
USA
Saturday, June 10, 2000 at 19:38:59 (EDT)

Hello to all Clusterheads. I can't believe there is a website for sufferers of clusters. I do feel alone so many times. Even doctors don't seem to know much about clusters. I started with clusters at the age of 13. I am now 51 and don't know what to do anymore. My doctor for the past 10 years has just dropped me because he claimed I wasn't making any progress or trying. The only medication that has worked in the past is caffigot. It never stopped the headaches but helped me with the pain and getting through the headache. Right now, I have no doctor and have suffered an attack since this morning. I use to be episodic but since March of 1993, I have been cronic. Most of the medications I have tried over the years have not worked. Caffagot does work but the doctor doesn't want me to have it. What do I do? I am looking for something to take away the pain. Thank you. Michael Ouellette - I still can't believe I found this site.
Michael Ouellette <frenchie@bit-net.com>
Nottingham, NH USA
Saturday, June 10, 2000 at 16:40:59 (EDT)

I'm a 27 year old male. Ive been experiencing CH since I was a junior in high school. First we thought i needed glasses, then we thought it was TMJ and finally a doctor suggested sever migrains. I tried Cafergot but that did nothing. Then i did some research and found the miracle drug Prednizone. My periods are random in season and last for around 6 weeks. Im luck in that they only come every few years. My mother has bad migrains and uses Imitrex which seams to help ALOT for me if i have a breakthrough. Once the shadow developes and i take one i will get a mild CH for about and hour and then it goes away. My symtoms are like most everyone elses. Most of mine CHs are around the 7 level, and I thank GOD ive never had a 9-10 and I pray for those that do. Its now 5:30am, i think im gona try to get some sleep. God Bless
Ryan <rjorr10@hotmail.com>
Long Beach , CA USA
Saturday, June 10, 2000 at 08:02:51 (EDT)

I have had clusters for 16 years.
Donald L.Armer <joanarmer @ WCOIL.com>
Lima, OH USA
Friday, June 09, 2000 at 23:20:04 (EDT)

I'm glad to share experiences with fellow sufferes. I have found that at the first sign of an attack Zantac 9ranitidine) 300 mgs is quite helpful, but less so after the spell ius well established. The usefulness of ranitidine was first commented on by a California Dr-wine grower who found his own red wines triggered his headaches. He also has GI acidity which he treated with an earlier drug, cimetidine, and found that it reduced or blocked his headaches. I read his letter in a medical journal and found it quite helpful.
Dan Deykin <dandeykin@aol.com>
Brookline, MA USA
Friday, June 09, 2000 at 14:34:44 (EDT)

Hi Everybody! At last, other people who know how I feel - I think it is a miracle and a blessing that I found people who have gone through what I have endured. I have suffered from these evil headaches for many years - I am now 39 yrs. old and a long time ago I had been sure they would not last as long as they have, but I am now still suffering. These "cluster" headaches started when I was in high school. I had a seat beside the window in my 11:00 English class. The sun would beat down on me and that is when I experienced my first "cluster". Then, everyday at 11:00 sitting beside that hot, hot window I would get this excruciating pain in the left side of my head - because of the sun I would get so hot, I felt like my temperature must have gone up to well over 100. I asked the teacher if I could change seats and he said "no". He was a really mean teacher. Anyhow, the headaches got more and more frequent and my mom took me to many different specialists. I had all the tests done, cat san, ECG, brain scan, etc...Doctors then, knew relatively nothing about "clusters" and I even had one doctor put me on "Seconal" which I took daily for about 4 months - I was only 18 yrs. old and I slept most of this year away. Anyhow, luckily my "clusters" only seem to come for about 1-2 months and then go into remission for about 3 or so years. However, at present they are back and I am once again desperately searching for some new treatment or medication that will get rid of them. Currently I am taking Verapamil and Cafergot, which seems to keep them at bay, but I am getting a lot of shadows now and I am scared that the Verapamil will cease to work. Well, I once again have to say to whomever started this site, Thank you, Thank you, Thank you. The next time I get a 10 episode, I will definitely not feel so lonely and crazy as I remember all of you other "cluster" people and wonder if any of you are going through the same thing at that particular time too!
Kelly Richardson <deryk@idirect.com>
Pickering, Ontario Canada
Friday, June 09, 2000 at 11:59:23 (EDT)

What a relief to find this site! My husband has suffered from cluster headaches for 17 years. We have been together for 7. The first cluster I ever witnessed was when we had just moved from Melbourne Australia to Perth Australia. I have never been more frightened in my life. I had to drive Neil to the hospital with him hitting his head against the dashboard screaming with me trying to read the street directory to find out where the hospital was! My clearest memory was of the Dr offering Neil 2 Panadols!!! I thought he was dying and he was screaming for oxygen which the Dr had no idea about.As I write this, Neil is inhaling his oxygen. He is four weeks into a cycle which came on 1 day after the birth of our beautiful daughter.I just can't believe there are people who know what Neil goes through and partners and loved ones who actually understand. Thanks Angela
Angela <kingan@alphalink.com.au>
Melbourne, VIC Australia
Friday, June 09, 2000 at 07:18:28 (EDT)

Just checking in AGAIN. It seems to help alot just to talk to all of you. Are you listening? Thank you. I really mean it. THANK YOU!! Three nights and days not so good but no killers. No shots of imitrex or trips to emergency rooms for narcotics. I've been on my oxegon quite a bit and am kinda shaky from interuped sleep. Aren't we all. Any day now the CH's will be leaving for awhile. I cannot wait. Neither can the laundry or the dishes much longer. I must be feeling better if that stuff is begining to bother me. Sorry to see so many new CH sufferers out there, but glad they found this sight as I have. Keep talking. God Bless Paula
Paula
USA
Thursday, June 08, 2000 at 20:29:06 (EDT)

Hi- I am new to this site, as I just ent througha tqo year remission and thought I had left this part of my life behind. It seemd there must still be a lesson to learn. The site has great info and may be quite comforting in the next several months.
Margaret Totten <totten@nbnet.nb.ca>
Saint John, NB Canada
Thursday, June 08, 2000 at 18:59:49 (EDT)

Hi, Just found this site today after returning to work after another episode of my brain trying to get out of my skull. I am really one of the lucky ones as I only get 2 or 3 short episodes (2 weeks) per year and sometimes not even those. Even so its good to know that I'm not on my own. I've been having these for about 20 yrs but it was only last year that I found a doctor that had heard of them...hello Imigran. What a difference! I still save the Imigran for the five star h/a's and use (please don't laugh) Sinutab for the others - seems to work. What also (sometimes) works for me is doing strenuous excersize to arms, shoulders and neck as soon as a hint of an attack appears, seems to clear something or other! All the best to you folks and especial thanks to those who are running this site for the excellent info. Alex
Alex
Devon, U.K.
Thursday, June 08, 2000 at 09:39:44 (EDT)

I am 39 and have been having episodic ch's since I was around 10, first one I had, I thought God was punishing me! I was diagnosed correctly for the first time in 1996 but have never been given anything that helps but cortisone and I am not sure that really helped as I was at the end of a cycle. My cycles seem to start either in the spring or the fall or in a really bad year both! They last 1 to 2 months. I have learned to live with this and it really sucks! I quit my head bashing when I ended up with bruises so now I pull hair and poke and knuckle my head trying to find a pressure point. I use ice on the face and eye and temple and neck and in the mouth which sometimes speeds the headache up to its more painful but eminent conclusion. This cycle though has progress far faster than most... I have gone from early shadows to 4 h/a's a day in a week! Usually don't get that many a day until much later in the cycle. I am soooo thrilled to have found this place filled with people who understand this pain. It is horrible that there are so many of us and so little help though. Take care!
Sherry <littlerags@worldspy.net>
Ashland, VA USA
Thursday, June 08, 2000 at 08:11:24 (EDT)

I am 47 years old and first had cluster headaches in my late 20s.What a great site - I recognise it all (unfortunately). I have just started another series of attacks after a break of about 5 years. I honestly thought that I had got rid of the beast. Had a very bad one last night on the rush hour train home from work - possibly the worst experience of my life. Am going to see my new doctor today - I have moved house since my last series of attacks and am praying that he has heard about cluster headaches and does not want to carry out further checks. All I want is my verapamil and Imigran (the UK name) injections.
Andy Collins <andy.collins@lineone.net>
Dorking, England
Thursday, June 08, 2000 at 03:44:25 (EDT)

Hello everyone!!! I am a 25 yr old female, and I was diagnosed today with cluster headaches. I have been experiencing the headaches for 4 years now. The first doctor I saw regarding the headaches told me it was muscle related, now finally 4 years later, a wonderful doctor, finally got it right. I'm trying to learn everything I can. I'm currently having yet another episode, they seem to come ever few months. I am not sure of the names of the medications yet, I go to pick up the prescription tomorrow. I am so thankful I have found this website. I didn't know if I was going to be dealing with this all alone. Take care all of you. God Bless, Misty
Misty C Brown <JERRYMISTY@aol.com>
Killeen, TX USA
Wednesday, June 07, 2000 at 23:21:04 (EDT)

Hello everyone. Today is the first time I've discovered this site - I cried when I realised that there were others out there who know exactly what this dreadful pain is like. I'm a 54 year old female and I usually have two 'sessions' a year, which last between 8 and 12 weeks at a time. I am currently in my fifth week and trying to cope with between 3 and 4 attacks a day, each one lasting about an hour. I too have had all the tests, tried most of the drugs. At the moment I take Imigran tablets (although my doctor is tomorrow prescribing me the nasal spray to try, as he says this will work much faster). Thank God for an understanding GP! He said that he realised how excruciating CH pain was when he was called out to another (male) patient at 3 am one morning to put stitches in his forehead: this chap had banged his head so hard on a brick wall because of the pain he was in, he had split it open....... As well as taking Imigran at the first sign of a headache starting (why do they call them "Headaches" when the pain is like having a screwdriver stabbed in to your eye, whilst at the same time it feels as if someone is trying to rip the side of your face off? I guess it must be because you also feel as if someone is hacking at your skull with an ice pick!). Anyway, at the first sign I take a tablet - but I also always have an icepack in the freezer (one of those soft types filled with gell) which I apply over my eye and to the side of my face/head: I keep this on for a few minutes, then I alternate this treatment with a red-hot hot water bottle (make sure you cover both the ice pack and the hot water bottle with a thin piece of material or you'll have burns and blisters to contend with as well!) This hot and cold treatment, plus the dancing around and crying, help see me through the attack. I am also having regular Acupuncture sessions (my GP recommended I try this about 4 years ago: it worked for me in that it stopped that particular cluster after just two sessions) - I then went once a month for treatment and didn't have a further cluster attack for 26 months, which is the longest I've ever been pain free. This cluster period though is worse than any I've ever had in terms of the intensity of the pain and the frequency of the attacks. At the moment, Acupuncture doesn't seem to be working it's ususal magic, but I shall continue to persevere. Thank you for listening to me: I have the support of a wonderful husband and son - but now I know you're all out there as well, I don't feel quite so alone. I shall try and remember this when I wake between 1 am and 3 am tomorrow morning...........Mo
Mo Graham <mo@gaytongraham.co.uk>
Leicester, UK
Wednesday, June 07, 2000 at 14:05:19 (EDT)

I have a headache almost every day. About once every few months the pain is severe enough to prevent me from working.
Stephen Caudle <caudles@ria.army.mil>
Bettendorf, IA USA
Wednesday, June 07, 2000 at 10:59:38 (EDT)

Hi all. I am not happy to be here, but here we all are. I am a female, almost 50 - going to be in a cycle on my 50th Birthday! I have had cyclocal clusters since my late teens. As I get older the remission gets longer, but the cylcle gets a little worse. I am now ending week 3 of probably 6. It is really a plesaure to have this web site. It is remarkable to read the exact things that occur to me. Right now, I feel wonderful, and have the amnesia that I need to forget what I feel in the next few hours after I fall asleep. My clusters, are nightly, but this time I am also getting a few during the day. I am now using Imitrex. Pills at night, when I try to stay calm???????????? and try to get back to some kind of sleep. I finally got the hang of the spray and that works in about 20 minutes. I see no pattern to these, not the time of year or stress or food or hormones or anything. It just does its thing. Good luck and peaceful nights to us all. Mary
Mary <Mter624@aol.com>
Hauppauge, NY USA
Tuesday, June 06, 2000 at 21:48:48 (EDT)

The devil played a game he thought was very funny on me. I went Two whole days with no headaches and a week with very very minor dances. I acually felt human again. I had about 5 hours of sleep 5 nights in a row. Now for two nights it's been pure hell again. Imitex shots, oxegon, and even morphine. No sleep and I feel like I am right back where I was. When is it going to stop? I just want to lay down and never get up again. I know time is the answer. Sometimes it's even hard to go on for one more minute. But thats all you can do. God carry me. I am to tired to do it on my own. Talk to you soon Paula.
paula
USA
Tuesday, June 06, 2000 at 12:13:44 (EDT)

Nobody realises how painful they are. Its good to know I am not alone
David Roberts <david.roberts@postbox17.freeserve.co.uk>
London, UK
Tuesday, June 06, 2000 at 12:09:27 (EDT)

great to find a site for cluster sufferers. i am a 42 y.o. farmer and have suffered from clusters since 1984. i have found sitting in a hot bath with my feet in water as hot as i can stand it and my head out of water with your face covered with a cold wet cloth takes some of the sparpness of the pain away. good luck
tom porter <tom@bushlink..com>
hay, nsw australia
Tuesday, June 06, 2000 at 08:51:30 (EDT)

I have posted here before, but here I am again to let you all know that thru this site I have found 3 other CH people in Perth WA and we are planning a meet in the near future. I am hoping that (regretably ) there may be others from WA who may read this and want to get in touch. AND, DJ from us here in Perth, thank you for the opportunity to join this web site and hopefully we can form a small clan here in Perth. Christine
Christine <slowie@iqnet.net.au>
Perth, WA Australia
Tuesday, June 06, 2000 at 08:32:44 (EDT)

Hi there. Well, I am juat an other person that knows well the pain of CH. About every 2 years for about one month...
Thierry Zamofing <zam@dplanet.ch>
Wettingen, Switzerland
Tuesday, June 06, 2000 at 08:01:18 (EDT)

3yrs ago Iwould get a stabing pain in my left temple if i drank a beer so i guit drinking that worked until 3 or 4 weeks ago i drank a beer just to see thought i would die now im getting them every day went to doc he gave me sansert
Todd R <gt65jr@yahoo.com>
las cruces, NM USA
Monday, June 05, 2000 at 17:54:56 (EDT)

Hello..my name is Tina and i'm not a cluster suffer,but i am in love with a man that does suffer from cluster headaches...i have seen how he suffers and feel totally helpless..i plan on marrying him...with or without clusters..in sickness and in health...i would love to join in a chat for people who dont suffer but know someone who does....thanks in advance...and i pray for you all....Tina
tina <irisheyes60@hotmail.com>
nashville, tn USA
Monday, June 05, 2000 at 15:59:47 (EDT)

i'm so relieved i found this site. My clusters are back with a vengence again. I have been a suffurer for 7 years, and was luckey not to experience them for 2 years. But now i feel they have returned to haunt me again. My pain is so intense that at times i trash my head against the wall to stop it further. ive tried the various drugs that my doctor has percribed for me and havent found relief.. I visited the doctor today and hes put me on imatrex nasal. I would like to hear from anyone who has used the drug to find out how it affects the cluster. your responses would be greatly appreciated. thank you and take care.. i donr want to suffer alone with this condition any longer
michael <mlachance3065@home.com>
mississauga, ont canada
Monday, June 05, 2000 at 13:28:04 (EDT)

Back again. This board is great. For the past several years, I was starting to become paranoik about the devil, but now I see it is alive and well, and not only with me. I just recently married, and my new bride knows about the devil, but don't really know how bad it gets. I just lost one whole week from work, because the devil was kickin my butt, again. Not fun, but when you see the "DOCTORS" and their deer at night stares, it starts making you wonder is it all worth it. I have only had them for 6 years now, but it is 24hr/day, 365 day/yr. They never stop. I can go for days with no sleep, because the pain won't allow it. Forget eating, and exercising. Now they tell me sensert will help, but it is back ordered from the manufacturer. GREAT. More later, time to get some rest, again. Steve..
Steve <pixxharley47@aol.com or smjohnson @ddc.dla.mil>
Jacksonville, F USA
Monday, June 05, 2000 at 13:10:37 (EDT)

I never had a headache in my life until I was at work and a 2x4 came loose from the overhead (about 15 feet up). I was hit in the right temple, broke my glasses, and knocked me both unconscious and off of a 6' ladder. I woke up on the ground, and in about 2 days the devil jumped on my back and hasn't left yet. The migraines started, and the Dr.'s gave me about every narcotic you can imagine, and for 1 yr. my memory is GONE. I got off the narc's, and demanded proper attention. CT's, MRI's all indicate that something is just inside my right temple, but the Dr.'s call it an achronodial cyst and won't remove it. It just happens to be on the same side I was hit, and where all of my devils companions start. I have been on all of the antidepressents, but I am not depressed, so I tell the Dr.'s that and they start me on something else. It is a never ending journey. They constantly ask if I am suisical, and for the past 6+ years, I keep telling them that I am not, or I would not be here now, geez. Just got a new Dr. now and he is the only one that has diagnosed me with chronic cluster migraines. Prescribed Sansert, but here in the Jacksonville, Fl. area, no one has it, and I am told it is on back order fromt he manufacturer. Great. Not much more to tell, life is a whirlwind, temper flares, relationships are questionable because I never know if I can even get to work in the mornings. I have had friends take me to the emergency room for uncontrollable convulsions because of the devis on my back. Ain't life great?, but at least we are still alive. Steve
Steve <pixxharley47@aol.com/smjohnson@ddc.dla.mil>
Jacksonville, Fl USA
Monday, June 05, 2000 at 08:24:12 (EDT)

I am 58 years old. My CH attacks started in 1985. The first one almost scared me to death. The clusters became more frequent over the next few years untill they were diagnosed as chronic. My latest attack began last week,the first one since April 1998. A doctor once told me,"the good news is they're not fatal". I'm sure he never had one.
George Kenney <kenneygj@aol.com>
Foxboro, MA USA
Monday, June 05, 2000 at 01:29:00 (EDT)

I am 65 yrs.old. I had my first attack in 1957, initially the attacks were quite frequent but as the years go by the remmission period is getting longer. I was beginning to think I was over the problem but today, on the Golf Course, I got a warning followed by a full blown attack. It is three years since my last Cluster .. I dread the next two months, or so. God! is there any worse pain? Tony Dwyer
Tony Dwyer <tonydw@global.net.au>
Perth, WA Australia
Sunday, June 04, 2000 at 05:47:01 (EDT)

This site is so validating! I have never known anyone who truly understands my pain and frustration but I know you all do - thank you. Knowing that helps (at least alittle :) ). I have survived clusters for 21 yrs. and they are episodic. I am on day 12 of my first cycle in 18 months (longest I have ever gone). Imitrex injections are a miracle and I thank the Lord for them. I just wish I could take more than 2 in 24 hrs. I see some of you have and have lived. I admit I have done 4 a few times but it leaves me with none as insurance will only cover what amounts to the prescribed dosage (2 in 24 hrs.). I have been through the site and I'm trying the "water" as I type (glass #3 and I'm floating ha, ha!). Also, when I'm out of Imitrex I have been taking 4 Excederin Migraine pills the minute I'm feeling "hot" on the side of my head. While they don't take away the pain they do seem to lesson it a bit. I hope that helps someone, if only alittle. I feel for you all and many of your stories have brought me to tears. Especially those who are chronic - I absolutely cannot imagine this forever. At least I know mine will stop in the next 3 to 5 weeks and be gone for awhile. Thanks for listening - Kasey :)
Kasey <widmans@home.com>
MI USA
Saturday, June 03, 2000 at 22:07:54 (EDT)

I just got over a series, my Doctor had me take topamax,after two weeks it broke the series, for how long I do not know but it apparently worked for me this time. I have had clusters for over 20 years and taken hundreds of different drugs, sometimes one works and sometimes it doesn't. I do not think there is any one "pill" that is a cure all for us but even if it works just once it's worth the effort. So if you have not tried topamax you might give it a shot. As all of you know the demon maybe back tomorrow or it maybe next week, but just now he is gone. I might add that I have had different drugs work before and they did not work the next time. But as all of us know you will try anything once. Ronnie
ronnie owens <rowen@okcareertech.org>
Wagoner, ok USA
Saturday, June 03, 2000 at 21:48:56 (EDT)

I have just been diagnosed with CH. At first, the pain scared me so much i thought i was dying. So far, i have tried Prednisone and Percocet for pain.....only somewhat effective. I think I have been lucky so far....my doctor has prescribed the necessary pain killers. I am afraid, however, that he will not continue to do this. Do doctors usually realize the amt. of pain and continue therapy? I would appreciate any info as i am new to all of this. Thank you. I am also sorry to read all of the stories and realize there are so many of us.
debbie <anrnl@yahoo.com>
pittsburgh, pa USA
Saturday, June 03, 2000 at 18:27:59 (EDT)

I am married to Blake. He is a chronic CH sufferer (for the last eleven (11) years). His story/situation is not much different from everyone else here....he was misdiagnosed in the beginning (I finally found the answer in a Mayo book). He has been on many different drugs with minimal results from all of them. I have tried to get Blake to add his message but he is having a very difficult time lately and ask that I do it for him. Mainly we just wanted to say that this site has been a blessing for us....Thank you
Jackie Warrior <jackiewarrior@aol.com>
Goshen, IN USA
Saturday, June 03, 2000 at 11:21:54 (EDT)

I've suffered from migraines all my life. Nine months ago these weird headaches (like an ice pick shoved through my right eye) started popping up. I had recently gone back to work after 4 years of being a stay-at-home mommy. It was a new field (computer programming, taught myself at home) and very different from home. So, the doctors have been treating me for migraines this whole time and FINALLY diagnosed them as clusters this past week. I'm on oxygen--nothing else works--and I'm very new to all of this. I'm familiar with the head banging, rocking, restless, agitated "dance" that is my daily companion. I guess the docs will now start experimenting on me with lots of different drugs...
Tammy Rome <tammy@healthyinstinct.com>
Ottawa, KS USA
Saturday, June 03, 2000 at 10:56:44 (EDT)

Hello again. Still doing the dance but only about twice a night not eight times and the Oxegen has been mostly taken care of these. This is both a blessing but still a curse. And only you fellow sufferers know why. Even one is to many. The nurologist has me on topamax and prednisone. Topamax is the newest one I have tried and the only one to have ever cut the severity of the headaches. But for me the side affects are horrible. NO sleep. It keeps me awake ALL NIGHT LONG. I have gone histerical from lack of sleep. I cry all the time and I am one tough lady that never crys. So last night I had had it. I didn't take it. I fell asleep right away. OH it felt SOOO good!! 50 min later I had to take am imitrex shot and I took the stupid topamax. I had two more headaches with oxegon helping those. Sleep I just want some sleep. I am off work on sick pay. It has taken 2 months to get it approved. And the Insurance company has really no clue as to what these are like. I have had oxegon for 13 years and it helps about 75% of the time in the begining mostly. And my insurance pays for it. My work has been pretty good. I work for a large company so the benifits even if slow are good. but I work in a small store. In Oct of 98 when I had my last cluster I had one at work. A pound your head on the floor, scream, dance, real good one. They had to call 911. Ever since then they have been exteemly suportive. I think people really cannot emagine till they see for themselves. I have not had to go to the hospital this time. Last time I was hospitalized on a narcotic drip. Plus made four more trips for intrivinious dilodid. But you know what guys WE ALL get tired of the drugs but when the nightly dances go away so do the drugs. For me it is life and death. Another killer could mean the end of my life literally. So if I have to go to the hospital or go without sleep or take morphine at home, I just want to live till I can be free of the dance and the meds. I cannot wait. Keep going everyone. If you don't like your doctor see another. Go to the hospital. Choose life and it will get better. It has to. Thank God for my husband and doctors. I will pray for you. Please pray for me. This is from another dancer who just found you all. Paula
Paula
USA
Friday, June 02, 2000 at 23:19:19 (EDT)

i've had clusters for 46 years and for the first time i'm telling someone beside my wife and my doctor about them. maybe i can help the younger people out there with the words of my doctor. he says " your going to hurt terrible but your not going to die from them." he's right i hurt but i'm still alive. i know what it feels like to put your head through a wall, use a rubber mallet on the side of your head, destroy a household of furniture,and then have to fix all the damage when it goes away. since 1983 i've been a guinea pig for every medication that's come on the market.and still they come back.i've never been able to obtain medical insurance so all my treatment has been out of pocket. i spent a month at the faulk clinic and the university of pittsburgh. i went through the tests, bone marrow, cat scans, mri's, dream tests, jaw specialists,spinal taps etc. when it was all over the tests showed nothing, and i walked out with a headache. i've never been able to take anything orally to stop them. they use to come frequently when i was younger but now they only come every 3 years and they are always on time. i know when they are coming from the saliva buildup in my mouth, it is the first sign of them. within the first 3 days of the cycle i lose 10 to 13 lbs before leveling off. i don't know if anyone has had a white blood count taken, but my count without the headaches is 21k during the cycle it runs to 51k normal count is 3k to 7k my doctors tell me. my body is always fighting off a massive infection but they can find none. there's no orally taken medication that works for me. since 1986 i've been taking demarol and mepragan to stop the pain and it works. my wife gives me the injections at the very sign of a headache. i'm going through a cycle now. it has been active for the last 9 weeks. when it comes i take 10 advil, ice pack, oxygen and a shot of demarol until i'm able to rest. your doctor may frown on the drugs but it works for me and allows me to live normally during the cycle. they are only drugs if you use them the wrong way in my case they stop the pain. during the cycle i do what they do in the hospital, get all the rest i can and drink lots of liquids to try and change the cycle. i just started on the imitrex injections and my headaches wore them out real quick so it was back to the demarol. at $75 for 2 injectors it gets costly. i don't know if i've given anyone anything they haven't heard before here but thanks for letting me speak my mind.
jerry wagner <paintedoakstrans@aol.com>
lake city, fl USA
Friday, June 02, 2000 at 23:12:46 (EDT)

I just found this site as I am again having a new episode. I get my episodes about the same time every year and they seem to keep getting worse each time. I have been suffering since my late teens and I am now 42. I tried a Neurologist 2 years ago and didn't seem to get true help. He tried me on Lithium, oxygen and made matters worse by giving me both Lithium and Lithobid at the same time. The Ercaf or Cafergot seems to help when I feel them coming on. I have found some good pointers here. I will keep coming back to learn more on how to avoid them. It is so dibilatating! Being a single father of 2 it is so hard to do my job. Thanks for making me feel less alone and knowing people are out there who understand the pain.
John Deyber <emortgage@aol.com>
Albuquerque, NM USA
Friday, June 02, 2000 at 17:21:34 (EDT)

I am 57 year old white male clusterhead since 1995. The first demon I met was what I later learned a 10 on the Kip scale. I was more than sure that I was dead. I would never have believed that such pain existed. I spent the next few days trying to explain this situation to my doctor and making him understand that tylanol is not made in heaven Anyway, this first bout with the demon from hell lasted about a week and a half and was correctly diagnosed my a maxillofacial surgeon who was checking my jaw alignment. since then I have had attacks at about one year intervals. The worst was when I did not sleep for thirteen days and spent the last five days walking. If I started to doze off to sleep I would be hit by a level 10 headache. That's enough to keep you awake. I checked into the hospital on the week old advise of my doctor and super neurologist and spent a day and a half sleeping. I had one level five or six when I awoke and that was it for about a year. Since then i've had a six week bout with a fifteen month break and now am four weeks into a new bout. My pain has now changed from the right to left side and the pain is,so far, only in the range of about seven. This means that I don't have the soaking sweats and blindness and I have had less temptation to treat it with a forty five. I wish I had some recomendation to offer on treatment but I know of none. I do pray a lot and that does help to shorten the duration. well it's getting late and you know what that means. I will pray for a low pain level. May GOD bless you all and give your ole heads a break.
HANK SPRINGER <VomSpringerHusK9>
MERIDIAN, , MS USA
Friday, June 02, 2000 at 15:22:22 (EDT)

Have been dealing with Clusters for past 10 yrs. Use predisone and SanSert once the cycles start.Can sometimes interrup the headaches by placeing a hot wash cloth on temple area and bending head down and placing presure to the left of neck.This does not work all the time. Perhaps this method will help some otherso
Carl J Walls <THEFROG58@aol.com>
Glennie, Mi USA
Friday, June 02, 2000 at 10:19:26 (EDT)

Oh so obviously I'm not alone. Hi im Gareth Im 14, and I think the cluster headaches might wanna make me the kluster King cause for 2 months i have suffered with not one break of pain and tablets from doctors just don't touch Nothing does. But It is good to know there are others like me who understand how I feel (Sorry if that sounds horrible.) Bye and thanx for listening.
Gareth Evans <Fuegan_149>
Rhymney, Wales
Thursday, June 01, 2000 at 19:04:55 (EDT)

I've had CH for about 15 years. Have been the full circuit, beginning with Mayo Clinic (they finally diagnosed correctly), then to Diamond Headache Clinic, Houston Headache Clinic, U of Wisc., etc. No one has helped.
Sandy <CCsmommy@aol.com>
Springfield, MO USA
Thursday, June 01, 2000 at 19:04:04 (EDT)

Hey, Nice to know there are people who know, understand and believe about Cluster Headache! Beeing 33 years young, I'm suffering frome this pains since about 13 years, the first period of about 8 years cronicly, the last period in episodes. At this moment I am taking Lodixal and Maniprex every day and Imitrex and O2 to stop "the Devil" as I found it named here on the site. Please feel free to react!
Patrick Erpels <abc.fiets@advalvas.be>
Wilrijk, Antwerp Belgium
Thursday, June 01, 2000 at 16:08:24 (EDT)

I've been a sufferer for 26 years.The past 1-1/2 years I've been cluster free. I want to thank my Esgic. Taking it when I feel almost any kind of pain coming on seems to be the trick. I've tried almost everything else there is and Esgic works the best for me.
SANDY FLYNN <SANDY@MICROMODE.COM>
ELCAJON, CA USA
Thursday, June 01, 2000 at 11:39:54 (EDT)

Imitrex has been a God-send for me - I have tried every medication that is available to no avail. The only other two medications that help "sometimes" are Sansert and Predisone. However, neither of these 2 medications can I be on for a long period of time. When I have to stop taking the Sansert, I get the Cluster Headaches every 2 hours. I'm so tired, if I try to sleep, I wake up in extreme pain, awake or asleep, it doesn't matter, the pain is constantly there. I depend on Imitrex injections up to as many as 8 to 10 per day.
Sandra Gambill <sandigambill@hotmail.com>
Whittier, CA USA
Thursday, June 01, 2000 at 01:45:41 (EDT)

The most fun you can have while your eye is being torn out!
Kevin Patterson <toolsrus@aol.com>
Chandler, AZ USA
Thursday, June 01, 2000 at 01:35:04 (EDT)

 

 

 


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