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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 Janurary, 1999. Thank you for your continued active involvement in this site and keep those guestbook entries coming!

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Click Here to go back to the Main Guestbook and post your message or read messages from other months

 

Have been "blessed" with these headaches since 1989. I'm now 56 yrs old and have tried so many meds I should be a registered pharmacist - except I can't remember the names of all of them. It's good to finally find someplace with other people who can understand the terrible pain. So often you try to tell someone and they will say, "Yeah, I had a migraine once too". Right ! I'll take a migraine anytime. This cluster is hitting me 2 - 5 times a day. Oxygen stops about 50% of them after 10 - 15 minutes of hell. The rest . . . . Unfortunately, Imitrex brings on coronary spasms in me. So I continue trying more & more drugs. I can't stand turning into a drug zombie - but the pain is worse.
John Williams <williajn@msn.com>
Redmond, WA USA
Saturday, October 31, 1998 at 22:35:06 (EST)

Sadly I had to join the other CH suffer`s. Happliy I found this site and the great ppl that r one it. I am a 36 year old woman that has been suffering from CH for over 20 year`s. The cronic CH set in about 2-4 year`s back. Like alot of other`s on this site I have been through hell. Doctor`s being a lab rat for test. I have cant find what trigger`s it. My worse attact`s or at night between 8pm to 3am. I do wake up with it and try to go to sleep with it. CH is very hard on my family expesially my children. I try to not let them get me down. There sometime`s I cant help it the BIG monster attact`s me and put`s me down, I do not want my children to have a momther that is sick all the time. I started my med`s again and I am seeing my doc regular now. I pray it help`s at least ease the pain. I dont expect a miracle even thought that would be nice. I just would like it to ease so I could be the mother I want to be. CH is a crippling illness that know one talk`s about. If I was in a wheelchair,had mental proablem`s or some other kind of diease then the medical cominatte would listen. I just would like to thank DJ for starting this site. It has helped me alot. Sorry for all the mispelled word`s i am not doing to good today. Kinda hard to think straight. Thank`s again Linda
Linda <buzzboy@iland.net>
Warrensburg, MO USA
Saturday, October 31, 1998 at 17:47:29 (EST)

Attention MIKE FOY: I read your entry, I am also from NZ and I can sympathise with you. I was a guinea pig for 15years. There are a few Dr's out there familiar with clusters. (not many) Where in NZ are you?? Feel free to email me if you would like some info. xxx Shazzy
shazzy <shaz@wave.co.nz>
New Zealand
Saturday, October 31, 1998 at 04:12:46 (EST)

I've been getting clusters off an on for about 4 years. I'm only 25. The headaches make me feel as though someone is stabbing my brain with a hot poker. I am a big man (6' 200 lbs) these headaches reduce me to a whining infant.
Eric Poston <None>
New York, NY USA
Friday, October 30, 1998 at 22:02:55 (EST)

My name is Matt I've been suffering from Clusters since I was 14, now at the age of 27 I've relocated my family to the south from Minnesota to see if the change in thee weather would help, so far no good. I always get my clusters in the fall or spring, whenever the amount of daylight changes. The one drug I've found out there the gives me some relief is Predizone, give it a try. Good Luck!
Matthew Morgan <Matt Morgan@cdmorgan.com>
Monroe, LA USA
Friday, October 30, 1998 at 12:32:16 (EST)

My husband has suffered 20 years from these **&#&$&! CH. I found this site yesterday and started him on "Dr. Jerry's Water treatment" and also on inhaling pure oxygen last night. He has had his first good sleep in weeks and actually awoke pain free. He started another one this morning, but took two glasses of water and another hit of 02 and was able to go to work without the runny, droopy eye and crazed look about him. Try this combination, people, something's got to help. The medical doctors sure aren't helping us other than making us into zombies with all the side effects of the damn prescription meds. Perhaps if we unite as a group, we'll get some attention - you poor souls who are sufferers and those of us who support you. Let's work together.
Margi <720270AlbertaLtd@shaw.wave.ca>
Caglary, AB Canada
Friday, October 30, 1998 at 11:27:01 (EST)

Two years, two years without any headaches at all. It was lovely! Now they are back and I am not a happy chap. Doctor is sympathetic, which is nice, boss expects me to carry on teaching even during an attack (approx. second lesson every day), which isn't so nice. Does any one know if acupuncture works? I am trying it as it worked for my Grandfather's cluster headaches. Don't let the pain rule!!!!!
Mark Williams <simon@brierley.org.uk>
Cambridge, Cambridgeshire UK
Thursday, October 29, 1998 at 17:21:15 (EST)

Refreshing too see that there are plenty of other suffers out there. NZ must be behind in the research of Cluster Headaches as the only drug I was offered was nortriplen. A total waste of time!
Mike Foy
NZ
Thursday, October 29, 1998 at 17:07:54 (EST)

I've been recently diagnosed with cluster headaches. It's comforting to know I'm not alone and that there is information available.
Michelle <shinma1@netscape.net>
Los Angeles, CA USA
Thursday, October 29, 1998 at 13:06:33 (EST)

I`m suffering since several years, but since some days, I know that it`s Clusterheadaches. Now I need information as much as I can get. Mainly I need a specialist here in Austria. Would be wonderful to get some help, befor I go mad. Thanks in advace ! Thomas
Thomas <wbw@aon.at>
Austria
Thursday, October 29, 1998 at 02:28:24 (EST)

Could not beleive I found this site with so many Cluster Headache suffers. I'm 55 years old and have been getting these headaches since 1972. It wasn't until 1988 that I found a Doctor who actually diagnosed these headaches. My relief comes from a combination of oxygen and Imetrex. Can someone tell me why 30, 25m pills cost $450.00. Thank God for insurance. I think the biggest problem we all have is trying to convince non-suffers that the pain we experience is real. Hope to return many times, what's that old saying, "misery loves company".
Charlie Kraemer <georgie@netins.net>
Seneca, MO USA
Wednesday, October 28, 1998 at 20:49:06 (EST)

I am 40 years old and have been suffering and suffering from CH since I was 18. I have gone through the whole gambit of Doctors and drugs with only very temporary results. I have bouts every spring and fall. I am having a bout now. I have resgnid myself to riding them out withhout the aid of dugs due to a particularily bad bout when taking Imitrex. I started taking Imitrex in early May one year when I was having about 2 H/A per day,but they soon grew to 5 or 6 per day with a great increase in intensity. Finally saw a specialist that got rid of them temporarily with Prednisone. I decided after that, that I would have nothing to do with drugs. So now when I am in a bout I stop drinking alcohol, I try and get proper sleep even if I have to sleep during the day and I try to stay calm. I was amazed at finding this site and showed my wife so that even though she sees my pain this would help her to better understand my situation. If only my employer would understand.
Blake Williamson
Sudbury, , ont Canada
Wednesday, October 28, 1998 at 14:22:28 (EST)

I have been cursed twice this year! I had a brutal cycle that lasted 8 weeks during the summer. Normally, after a cycle, I am 24 months cluster free. However, I got a sinus infection that I didn't treat quickly and, so my Dr. said, this triggered the Clusters to return. I'm back on Prednisone, oxygen and Imitrex. The Imitrex doesn't work well for me. Please pray for my relief!
Richard <RGreen@aol.com>
Charlotte, NC USA
Wednesday, October 28, 1998 at 09:07:35 (EST)

My husband suffers from these terrible headaches. I have found so much information and support from everyone at this site. Thank you all!
Susan Rader <susu911@aol.com>
Loveland, Co USA
Wednesday, October 28, 1998 at 00:30:11 (EST)

My husband suffers from these terrible headaches. I have found so much information and support from everyone at this site. Thank you all!
Susan Rader <susu911.com>
Loveland, Co USA
Wednesday, October 28, 1998 at 00:06:24 (EST)

I've been checkin the Internet for months for a cluster headache site and was thrilled to see one added! I've suffered greatly from clusters for 12 years and am anxious to see what others are doing to battle them!
Randy Jackson <randy.jackson@faison.com>
Atlantic Beach, FL USA
Tuesday, October 27, 1998 at 21:54:33 (EST)

About 8 years ago at 32, I moved back from California to Michigan and with the first Winter came every classic symptom of SAD (Seasonal Affective Disorder). I spent hours at the library learning about the hypothalamus, seratonin, and effects of light therapy. Spring cured that problem, fortunately, and I thought that the depression I had experienced was probably the worst thing that had ever happened to me, that is, right up until the following Winter when the cluster headaches began. I had no idea why several times a day, or night, the excrutiating pain behind my one red, swollen, tearing eye would occur and had me jogging down the street, or downing a coke, and trying different foods, and wondering if it had something to do with my blood sugar, drinking, or SAD again. In a few weeks, they went away and didn't occur again for 3 years. This time, my girlfriend found the description of Cluster Headaches in some home medical reference, but the best advice I could find was to just treat the pain at the onset with the strongest method possible. After a few weeks of the familiar debilitating episodes, I drove to Florida, suffering only one attack along the way, and once in the Florida sunshine, I was free of them and convinced that sunshine must somehow be related, as with SAD. This topic came up again this morning when my (still) girlfriend mentioned an article in today's Detroit Free Press that suggested some headaches are linked to bacteria in the mouth, causing some type of infection. I'm doubtful, but just doing a little research here to see if anyone else holds this opinion... If only they were as easy to treat as getting my teeth cleaned more often! Keith Between Us
Keith <kvz@juno.com>
Sylvan Lake, MI USA
Tuesday, October 27, 1998 at 18:45:00 (EST)

My heart goes out to all you guys. I started suffering episodic clusters since 12 years old and not until last year that they got very structured. I have been trying to get help from the best neurologists but only to be dissapointed. I am 23 years old now and decided if I am going to have CH anyways, I would do my own research. I wonder how much CH has to do with mitral valve prolapse; I asked this because there is something called the MVP syndrome that for some reason affects the serotonin level in your body and serotonin is the main cause for CH.Most people do not know they have MVP. I have been on SSRI and I have been headache free for 12 months until now. But the thing is I also have a cold, if it is not a coincidence, I think Histamine is playing a big part in my bout. If you have nasal blockage as an onset, try this, do not let yourself in that situation. Carry a bottle of Afrin, take Quercitin Plus (supplement) 500mg 2X a day or Benadryl all day (but that will make you drowsy). Also, try Crystal Star cluster caps.Eat a lot of magnesium food to reduce contractions and throbbing. Exercise (cardio) your body produces natural endorphin when you are excercising and quit smoking and quit caffeine. I saw a big improvement after quiting a year, RUN instead (it lowers your blood pressure) I can only help you guys this much, do not give in and never give up please! P.S. When you are having a CH, try this, fill your tub with two inches of very hot water and stick your hands and feet in there while having someone putting an icepack behind your neck. It draws bllood to the hands and feet and gives you immediate relief. Please write back for any insights! Good Luck! I feel your pain!
Marc Convery <mkconvery@earthlink.net>
New Orleans, :A USA
Tuesday, October 27, 1998 at 15:57:58 (EST)

I am a 27 year old who recently received confirmation of my chronic CH diagnosis. In fact I have been suffering CH's since I was 16, but the initial diagnosis took 5 years to make due to my age. I've only just embarked upon preventative medication and the Imitrex (Sumatriptan) painkillers, so am hoping that I'll be able to "ride it out" for the rest of my life with the correct doses. Fingers crossed. It is however a comfort to know that there is such a forum for us to get together, talk, exchange ideas and observations. With a little luck and a concerted / oragnized effort on the parts of ourselves we'll be able to push MedSci in the direction of a resolution. In that light, my only suggestion (echoed throughout this site) to those who visit here is "Keep detailed records" as I know from close friends who are also medical professionals that all such info helps in the path to a cure.
Kevin Chapman <arkazae@mailexcite.com>
Menlo Park, CA USA
Tuesday, October 27, 1998 at 14:25:27 (EST)

Cluster Headaches approximately twice a week
Gwendolyn B. Ross <gwendolyn b. ross @att.net>
Houston, tx USA
Tuesday, October 27, 1998 at 09:29:47 (EST)

Great to see a wonderful site and nice support network...I have been a CH sufferer for 13 years, and was diagnosed in 1987. I am fortunate to not have the chronic condition but rather episodic...used to have episodes twice a year for several weeks, then once a year, now every other year. At age 33, I hope that the suffering will end soon, although I just started an episode yesterday (first time since 1996). For all you chronic CH sufferers, I feel for you! Hang in there, don't do anything that you might be tempted to do during a headache...
Leigh Bandy <lmbandy@aol.com>
Grand Rapids, MI USA
Monday, October 26, 1998 at 14:41:49 (EST)

I am a 31 y/o single mom whom has suffered with Chronic Cluster Headaches since 1994. So many times when searching for info or updated treatments on cluster headaches, I come face to face with Migraines. It has often been discouraging. As if our headaches do not count because they are not as common. Other problems arising from the lack of info is everyone wants to treat and label the headaches as migraine. Some days I believe I would welcome a Migraine verses the Cluster. Personally, my headaches developed after a continual exposure to a neurotoxic pestiside. I would certainly think with the amount of chemicals used in our society on a daily basis, we will need to further address chronic headaches.
susan <msx3bz@aol.com>
blue springs, mo USA
Monday, October 26, 1998 at 14:11:50 (EST)

My boyfriend has suffered with cluster headaches for 20 years and last winter was the first time i seen what they do to a person and it is ???? only the person suffering can tell you what it is or how to explain it.
Dylana Scott <whitesock@webtv.net>
orland, ca USA
Monday, October 26, 1998 at 12:45:51 (EST)

I am 27 and just started (3 months ago) getting these weird headaches I describe as an icepick getting stabbed through the right side of the top of my head behind my eye. Anywhere from 2 to 8 a day at different times, lasting 5 - 30 minutes a time. I went to the doctor and they arranged an MRI, which came back normal, which is good, but now I am right back where I started. They still had no diagnosis. Then I found your site. I feel lucky not to suffer as some I have read about and I am thankful for those who have shared their stories. I am not crazy and these do exist. Thank you.
Haley <hhurt@reemay.com>
Nashville, TN USA
Monday, October 26, 1998 at 10:33:35 (EST)

I have endured these monsters off and on for 19 years. I also suffer from hay fever, so through the years had the h/a's diagnosed as Sinus, Vascular, Tension, and Sinusitus. One night / morning (3:00a.m.) about ten years ago, I couldn't handle the pain anymore, so I decided to make the rest of my body hurt even worse by going outside and running until I collapsed from exhaustion (my subconscious hope was that I'd faint and eventually get rescued by an ambulance). Although the running initially magnified the intensity of the h/a, I was shocked to soon realize that my h/a had disappeared! I have since used this method to relieve more than 50 h/a's. It's not perfect - I AM in much better cardio shape, but the neighbors must think I'm pretty weird when they see me outside running in the wee hours. Plus my business associates have given me some strange looks as I've abruptly got up and rushed out of meetings. Thanks for the great web site!
Jake
Portland, OR USA
Monday, October 26, 1998 at 02:20:12 (EST)

Well done on the site! I've had CH since approx age 21, I'm now 37. The last one I had was 4 years ago! After reading some of the comments, I consider myself very lucky!! I've read that the average age is 20-40yrs old so I hope I'm out growing these? Oh please tell me it's true. Imetrix seems to work for me in tablet form to ease a little of the nasuea. Thanks!
Jim Fisher
USA
Sunday, October 25, 1998 at 20:02:42 (EST)

Its nice to find a site but i am in PAIIIIIIIIIIIIIIIIIIIN
robin g <terryleeh@aol.com>
salisbury, ma USA
Sunday, October 25, 1998 at 15:28:00 (EST)

Nice site. I am suffering cluster headaches now- so I'm looking for quick releif.
Bob Battle <BBattle@sprint.ca>
Ottawa, ON Canada
Saturday, October 24, 1998 at 21:27:41 (EDT)

Well, what can I say... Sad that so many of you suffer the same pains that I do, but equally sad to know that you do. After eight years of thinking this was a "frontal sinus" problem, my docter has finally diagnosed CH. At least the knowledge of knowing where the pain comes from and the fact that one can make a life with this desease makes this site a definite sigt for soar eyes (as mine are right now). What can we all wish for but strenght and endurance... will have to see if this is enough... It is a comfort to know you are all out there and that there is a place to share the pain and use each others strength at the time we need it most.
Mike <macmike@mail.dds.nl>
Haarlem, Holland
Saturday, October 24, 1998 at 19:46:21 (EDT)

Classic Case: I have been coping with cluster headaches for about 20 years (first attack at age 27). I am lucky to have a relative that is a neurologist and she diagnosed ch right from the start. At that time the only remedy was prescription pain killers taken at the onset of an attack. It is interesting that I was diagnosed with Bi-polar Disorder and started taking lithium for that about six years after my first ch attack. (Was not even aware that lithium was being used for ch's). It did not help my headaches but it did help the disorder it was prescribed for. I have addictive tendencies so my cousin neurologist started me on verapamil (240 mg/day-120 mg taken 2x day) as a preventative measure in 1991. She also added imitrex (25 mg--works in 10 minutes for me)to use only at onset of an attack. So far in 1998, I have taken 4 doses of imitrex...this is progress! I have found that if I miss my verapamil I am at high risk for an attack. If I am religious about my daily dose of verapamil I am virtually headache free. It took a long time and alot of suffering to finally find the right combination and I am grateful. I am also grateful to find this website. I read the messages from other sufferers and cannot believe that people are still suffering from cluster headaches. Oh yes, I stopped drinking alcohol in 1991 and I have experienced consistent improvement with my cluster headaches and my life.
Charlene Roth <charlene.roth@gte.net>
Miami, FL USA
Saturday, October 24, 1998 at 10:03:27 (EDT)

Classic Case: I have been coping with cluster headaches for about 20 years (first attack at age 27). I am lucky to have a relative that is a neurologist and she diagnosed ch right from the start. At that time the only remedy was prescription pain killers taken at the onset of an attack. It is interesting that I was diagnosed with Bi-polar Disorder and started taking lithium for that about six years after my first ch attack. (Was not even aware that lithium was being used for ch's). It did not help my headaches but it did help the disorder it was prescribed for. I have addictive tendencies so my cousin neurologist started me on verapamil (240 mg/day-120 mg taken 2x day) as a preventative measure in 1991. She also added imitrex (25 mg--works in 10 minutes for me)to use only at onset of an attack. So far in 1998, I have taken 4 doses of imitrex...this is progress! I have found that if I miss my verapamil I am at high risk for an attack. If I am religious about my daily dose of verapamil I am virtually headache free. It took a long time and alot of suffering to finally find the right combination and I am grateful. I am also grateful to find this website. I read the messages from other sufferers and cannot believe that people are still suffering from cluster headaches. Oh yes, I stopped drinking alcohol in 1991 and I have experienced consistent improvement with my cluster headaches and my life.
Charlene Roth <charlene.roth@gte.net>
Miami, FL USA
Saturday, October 24, 1998 at 10:01:07 (EDT)

Cluster Down Under - I hope i'm not the only one. Please don't be offended but I would be remis in not telling you of one substance that has helped me. In Australia this substance is illegal as it is for most of you around the world except those who can indulge in Amsterdam and a few other lucky places. So I won't tread on any toes I won't mention the name but it grows like a weed and you smoke it. I have heard that research has been done on this thereputic substance but it is so hard to find maybe because of the illegal thing. An old friend of mine who is no longer with us, told me try this not as a cure for the attack but to try to control the effects. He used it for pain and I found that although the cluster pain did not go, it allowed me to predict the end a little like us predicting that we are in for a big one, (CLUSTER) that is. I would then be able to take my focus off the pain and put it somewhere else, usually a story on the TV or music, in the background, with my focus relaxed I found that the pain too would start to relax. As I said it wasn't a cure for the headache but for some reason it certainly allowed me to deal with the intense pain almost immediately and was a lot more effective than banging my head on cold tiles in the bathroom. I think we often try to create pain somewhere else hoping that it will overide the war in our heads. This is a great site and I shed a tear or two reading some of your messages and experiences thank you.
B Wright <Jorgiegirl@bigpond.com.au>
Sydney, NSW Australia
Saturday, October 24, 1998 at 00:15:07 (EDT)

Cluster Down Under - I hope i'm not the only one
B Wright <Jorgiegirl@bigpond.com.au>
Sydney, NSW Australia
Friday, October 23, 1998 at 23:43:57 (EDT)

what a wonderful sight. my headaches are the worst part of my life however, i do get relief with imitrex injections. i feel so much compasion for those who get no relief. please feel free to email me if you need to talk about your headaches, I know where you are coming from take care
mitch <mlutzke@aol.com>
saginaw, mi usa
Friday, October 23, 1998 at 21:05:19 (EDT)

thanks for the wonderful sight. these headaches are the worst thing in my life. imitrex injections give me relief however, and i consider them a godsend. those of you who never get relief have all my compassion and god help you. best of life to you all. take care
mitch <mlutzke@aol.com>
saginaw, mi USA
Friday, October 23, 1998 at 20:58:12 (EDT)

Thanks for the great info:) I never realized until today that what I suffer from are cluster headaches. I always thought they were just migraines. Now when the pain wakes me at 3a.m. I know I can "talk" to someone who knows what I'm going through.
beth <rseeber@snet.net>
Wallingford, CT USA
Friday, October 23, 1998 at 19:47:51 (EDT)

I am just beginning another cycle of clusters. I never realised that anyone else out there suffered. I have had them for 18 years now, and it was only diagnosed 2 years ago after numerous cat scans, xrays, drugs by the 100. I was treated for trigeminal nueralgia for 15 years and was stoned on tegratol all this time and it was so frustrating not having anyone in the medical profession in New Zealand skilled enough on the subject to help me. I resorted to pethidine injections in the end and lost 8 weeks out of my life every year. I am still used as a guinea pig by my GP and specialists and I wish I knew of someone in New Zealand that could help me with the proper medication. The clusters have just revved up again and I seem to get hit every spring. I am so relieved to have found you people. If you know of a specialist in New Zealand who can help me, please email me. I need help quick.
Shazzy <shaz@wave.co.nz>
New Zealand
Friday, October 23, 1998 at 06:26:55 (EDT)

I have a 12 and 1/2 year old daughter. She had in the past suffered from migraines. In the last 2 days we have had two headaches which have been "sort of" diaganosed as cluster headaches. Giving Ibuprofen and Tylenol has not worked. She basically sleeps these off. Please advise if this sounds like clusters. She gets dizzy and the pain is almost as severe as a migraine. She usually sleeps from 2 to up to 5 hours and then the headache is lessened. AFter she is awake she will go about 1 hour and it will be gone. Please help - I hate seeing her suffer and have to miss a lot of school. Thanks for any info
Achaiah Hughett <rhughett@info.ave>
Oneida, TN USA
Thursday, October 22, 1998 at 23:19:34 (EDT)

This is a great sight!!! I've had CH for about 11 years now but never knew what they were until 3 years ago. I had CAT scans to check for tumors and been checked for sinus problems but you all know that wasn't the problem. I've been using Oxygen now and it seems to help alot.I haven't tryed any meds yet. thanks for this web sight, now I have something to ask my Doctor about.
Dale Wolford <LTLWolf5@aol.com>
Lawrence, Ks USA
Thursday, October 22, 1998 at 22:45:27 (EDT)

Thank you so much.After finding the info on this site I got my throbbing head to a neurologist and have just started verapamil and oxygen. My clusters were destroying my life and my family doctor,try as he might, just wasn't able to help me.My children and my wonderful wife,whose patience has been stretched as much as my sanity,thank you for being there.
David J Mowrer <zarathustra2@webtv.net>
lancaster, pa USA
Thursday, October 22, 1998 at 17:04:29 (EDT)

I,m a 28year old female just diagnosed with C.H. Thank you for giving me a place to find information.My family and I greatly appreciate it.
Christine Dominguez <Bow-Wow-Meow@webtv.net>
Miami, Fl USA
Thursday, October 22, 1998 at 16:03:07 (EDT)

Here's my contribution to this site. Hopefully I can be of some help for other CH patients and perhaps I can gain more information. I've got CH for more than 25 years now and it seems to get worse. I've got treatments with oxygen, Prednison and Verapamil. The Prednison and the oxygen are the only which give some relieve. I would like to get more information about the causes of CH. I know there are some 'triggers' like alcohol, spicy food, abrubt changes of air-pressure, but there's little known about the real causes. Who can give me more information?????
Bert Buunen <remain@wxs.nl>
Almere, The Netherlands
Thursday, October 22, 1998 at 04:26:54 (EDT)

Thank God I found others, besides my loving wife, who understand the unbearable pain. I pray for a cure soon and until then I welcome any relief I can get, even temporary.
C. Richard Robertson <richard.robertson5@gte.net>
Genoa, WV USA
Wednesday, October 21, 1998 at 05:40:06 (EDT)

great site. I wish all my fellow suffers relief.
patrick conway <pconway@microm.net>
spokane, wa USA
Wednesday, October 21, 1998 at 02:48:42 (EDT)

Dedided to see what was available on the internet that might be helpful in treating my CH/Migrain combinations. Wasn't surpised to find so many of us out there, but surely found it depressing that we're all still in the same suffering boat, paddeling like crazy to try and stay afloat. Why aren't the Dr.'s listening, and why isn't more research being funded since we are definitely a growth industry. Or is it more profitable to keep us chronic? Surely with all the money, research, doctors and patients involved in this multi-billion dollar industry, someone out there should be able to offer us more than lip-service for a cure. Isn't it time all of us who suffer, stood up - united - in such a way as to get the attention of the powers that be - who control the purse strings of research, or release in the event something has already been discovered, but it's just not profitable to release. Let's speak out for ourselves. Let's scream about the monster that resides in our heads, and beg or demand the attention necessary to achieve the end goal - a cure.
Brenda Calvin <vbailey@erols.com>
Manassas, VaVA USA
Tuesday, October 20, 1998 at 22:03:20 (EDT)

What can I say that hasn't already been said by everyone else? I've been suffering from CH sessions for about 18 years, with periods of remission in between. I have tried various meds with little success and am currently on Sansert, which has worked to block the headaches in the past, but is not as effective with this series. I have had long and difficult (a mildly descriptive adjective) break-through HA this time and the CH session has lasted longer than ever before. It is a relief to read the other postings and know that I am not as alone as I feel when the pain is so very unbearable. Thank all of you for being there, but I am truly sorry that anyone has to be.
Sandy <nexgen@frontiernet.net>
North Hollywood, CA USA
Tuesday, October 20, 1998 at 17:34:47 (EDT)

What can I say that hasn't already been said by everyone else? I've been suffering from CH sessions for about 18 years, with periods of remission in between. I have tried various meds with little success and am currently on Sansert, which has worked to block the headaches in the past, but is not as effective with this series. I have had long and difficult (a mildly descriptive adjective) break-through HA this time and the CH session has lasted longer than ever before. It is a relief to read the other postings and know that I am not as alone as I feel when the pain is so very unbearable. Thank all of you for being there, but I am truly sorry that anyone has to be.
Sandy Moss <nexgen@frontiernet.net>
North Hollywood, CA USA
Tuesday, October 20, 1998 at 17:31:30 (EDT)

Hi, I am a 20 yr old student in the middle of my hardest summer class when I was diagnosed with cluster headaches. Imagine it was a neuroanatomy class, ha ha. These haedaches suck!!! I read some the descriptions that were posted and would like anyone to email me so we couls chat because my headaches are a bit different.
Jaime <jp3776@usip.edu>
Philadelphia, PA USA
Tuesday, October 20, 1998 at 14:38:28 (EDT)

Have had CH for 27 yrs. Just figured it out Wed. 10-14-98, after stumbling onto the site. I've been treated for tension.sinusitus and alergy. This year was the worst. I get them in the spring, so I always thought they were alergy-sinus related. Today I saw my Doc he asked me how it was going. When I told him I thought they were CH he looked at me and said---" BUT THOSE ARE EXCRUCIATING"---yes I know.Anyway armed with over 50 pages of documents from this site,JAMA,John Hopkins and others he asked me what everyone was recomendind as a course of treatment. This was one of the greatest days of hope for me. THank you for this site. thank you for this site!! THANKS!!!
Bill B. <buchner@wizzards.net>
Roseburg , OR USA
Tuesday, October 20, 1998 at 01:08:43 (EDT)

I am 27 years old and back in Jan of this year started to experience headaches. I went to my primary doctor but to no avail. I was then referred to several other doctors including an ENT (Ear Nose & throat), CAT scan (sinus, MRI, etc... I have been told I have no sinus problems or any brain tumors. All have prescribed different drugs. To date, none have helped it completely. I'm at my wits end with this pain. It comes on every day, but the majority of the pain is of my right side of my forehead and behind my right eye. I'm beginning to think it might be a cluster headache. Does anyone have any suggestions, (medications that have worked for them or a headache clinic located in the Charleston, SC area)??? Please let me know. I can longer take this daily pain!!! Thank you..
Kristian <kristianjw@worldnet.at.net>
Charleston, SC USA
Monday, October 19, 1998 at 21:12:21 (EDT)

I am 27 years old and back in Jan of this year started to experience headaches. I went to my primary doctor but to no avail. I was then referred to several other doctors including an ENT (Ear Nose & throat), CAT scan (sinus, MRI, etc... I have been told I have no sinus problems or any brain tumors. All have prescribed different drugs. To date, none have helped it completely. I'm at my wits end with this pain. It comes on every day, but the majority of the pain is of my right side of my forehead and behind my right eye. I'm beginning to think it might be a cluster headache. Does anyone have any suggestions, (medications that have worked for them or a headache clinic located in the Charleston, SC area)??? Please let me know. I can longer take this daily pain!!! Thank you..
Kristian <kristianjw@worldnet.at.net>
Charleston, SC USA
Monday, October 19, 1998 at 21:11:30 (EDT)

I have suffered from CH for 27 years. I'm a woman 43 yrs. old. It seems that this time around they are much more intense and last for over an hour. I take Fiorinal w/ Codiene for the pain. However, I have been on Verapamil since 1995 - and it worked beatifully. I never felt better in my life. I see my Neuro. tomorrow - I'm guessing that I've built up an immunity to the Verapamil. All of you sufferers are in my thoughts.
Bonnie Korpi <korpi@me.berkeley.edu>
Berkeley, CA USA
Monday, October 19, 1998 at 17:44:49 (EDT)

I have suffered from cyclic CH since about 1984. The cycle frequency increased over time and went chronic about one year ago. Like so many of you, I have tried a variety of meds and med combinations. Similarly, I have tried several doctors and still find myself suggesting meds I have read about on this or other sites. I sometimes wish I could find a neurologist that has suffered from CH, the others seem to take them so lightly. Perhaps worse even than the pain (if that's possible) is the demorilizing and debilitating effect the CH have. I am sick and tired of swallowing or injecting medication and seem to have less energy over time to fight the CH. This site is most helpful and I would be pleased to donate towards the cost of its maintenance.
Scott L <lloydsj@enteract.com>
Palatine, IL USA
Sunday, October 18, 1998 at 04:17:54 (EDT)

I am a 30 yr old healthy woman with clusters for 9 years now. I am so happy to have found this site. I wish I could give you all a hug. You're in my thoughts.
chris Karper <ckarper@aol.com>
orlando, fl USA
Saturday, October 17, 1998 at 23:09:42 (EDT)

I was just finally diagnosed with CH...after only suffering with the symptoms for the last 6-7 years. I thank goodness for thw Web and especially your site. I was sure I was the only one on Earth who suffered from this and that no one could possibly fathom the pain I expereience. Thank you so much and let's hope all sufferers can someday rest easy Anthony
Anthony Robinson <ansonee@mail.geocities.com>
Minneapolis, MN USA
Saturday, October 17, 1998 at 14:27:41 (EDT)

i am a chronic cluster headache sufferer for 16 years now. i've been reading all of your complaints and I say you should all dial 1-800-headach . this is the diamond headache clinic in chicago! these people understand your pain. call now!headaches are their business.most of you are confused about your dignosis and/or your medications!CALL 1-800-HEADACH now! LOOK FOR THE SOLUTION FOR THE PAIN!
pat mcgrath <macfamly@jorsm.com>
chicago, il USA
Saturday, October 17, 1998 at 00:35:21 (EDT)

Ditto on the accolades for this site. Im in my 24'th year of these nightmares. Went the first 17 misdiagnosed by my MD. Finally saw a neuro, and it was one of the greatest days of my life. Mine are epicisodic, and so far all drugs prescribed have worked. Started with Sansert then Prednisone and now Belemine which is the best. I chew one followed by water at the earliest signs. Takes about 20 min. to take effect. The cycle I'm in now is one of the longest, about 3 months. I know they could go chronic but I've heard they subside or go away around age 50. Bill
Bill <billt@bellsouth.net>
Woodstock, Ga USA
Friday, October 16, 1998 at 22:10:54 (EDT)

thank you very much for all the info, have never seen so much in one site, it has been very helpfull to me to hear that you are not alone. You do not hear of to many people that have CH.
leslie thompson <leslie.thompson@shaw.wave.ca>
calgary, ab canada
Friday, October 16, 1998 at 21:23:13 (EDT)

thank you very much for all the info, have never seen so much in one site, it has been very helpfull to me to hear that you are not alone. You do not hear of to many people that have CH.
leslie thompson <leslie.thompson@shaw.wave.ca>
calgary, ab canada
Friday, October 16, 1998 at 21:22:41 (EDT)

Fine sight
Bill Kimmes <mod.1k@juno.com>
Foxboro(Superior), Wis. USA
Friday, October 16, 1998 at 20:28:09 (EDT)

This is my second e-mail add. which is easier to retreave Would like to hear more about ch I have had them now for 17 years
Bill Kimmes <mod.1k@juno.com>
Foxboro (Superior), Wis. USA
Friday, October 16, 1998 at 20:23:52 (EDT)

Excellent site...very informative! I'm 47 and going through my second episode (the first was two years ago). I have many questions, but foremost on my mind is: are there any signs that an episode is coming to an end?
David <rusnock@gvtc.com>
Bulverde, tx USA
Friday, October 16, 1998 at 20:23:33 (EDT)

I have had cluster headaches for 22 years, changing from episodic to chronic about ten years ago. I am seeking information regarding anyone who has experienced changes in cognitive ability, especially loss of short term or "working" memory. I am a secondary science teacher and have returned to the classroom after a nine year disability from the headaches. I still have headaches, and the loss of sleep takes its toll, but I thought I would try a return to work. My ability to function is compromised by the headaches. I also have difficulty concentrating and completing cognitive tasks. I would also appreciate information regarding treatment of pain...what has worked for you. Also any information on the treatment of the insomnia that is linked to the headaches. Appreciate all replies to mworleybird@hotmail.com
Mark Worley <mworleybird@hotmail.com>
Artemus, KY USA
Friday, October 16, 1998 at 17:53:55 (EDT)

I have had cluster headaches for 22 years, changing from episodic to chronic about ten years ago. I am seeking information regarding anyone who has experienced changes in cognitive ability, especially loss of short term or "working" memory. I am a secondary science teacher and have returned to the classroom after a nine year disability from the headaches. I still have headaches, and the loss of sleep takes its toll, but I thought I would try a return to work. My ability to function is compromised by the headaches. I also have difficulty concentrating and completing cognitive tasks. I would also appreciate information regarding treatment of pain...what has worked for you. Also any information on the treatment of the insomnia that is linked to the headaches. Appreciate all replies to mworleybird@hotmail.com
Mark Worley <mworleybird@hotmail.com>
Artemus, KY USA
Friday, October 16, 1998 at 17:52:51 (EDT)

Great site. Feels great to know and learn about other sufferers. No one should ever underestimate or ignoer a sufferer's thoughts of finding relief by ending thier life - PLEASE! After suffering for 3 years I was diagnosed with atypical chronic cluster headaches at the Diamond H.A. Clinic in Chicago - after many dead ends. Have been treated with Veralin/Verapamil for two years. I hope the misery will not reoccur.
Leo A.
Sturgeon bay, WI USA
Friday, October 16, 1998 at 15:46:33 (EDT)

I have cluster headaches and am being treated with Imitrex nasal spray and tablets, along with Inderol. I am having up to 4 headaches in a 24 hour period now and they are getting worse. This page has helped me a lot to get new info about treatment.
Roger Duffey <RTDuffey@aol.com>
Davenport, ia USA
Friday, October 16, 1998 at 13:00:00 (EDT)

thanks for the sight, what a blessing to have a place to come where there are others that really understand.
scott <soappie@hotmail.com>
cincinnati, OH USA
Friday, October 16, 1998 at 00:02:21 (EDT)

I have had cluster headaches for 3 yrs. My doctor started me on BUTALBITAL COMPOUND TABLETS. this medicine has really helped. I have tryed everything. This medicine is the only one that has worked for me
judy <bbco@webtv.net>
laplata, md USA
Thursday, October 15, 1998 at 23:32:25 (EDT)

I have had them for years and they are devastating.
Geer Dunbar <gd070948@aol.com>
Plymouth, IN USA
Thursday, October 15, 1998 at 22:57:10 (EDT)

Thank God for this site!
Marcus <marc101099@aol.com>
Sacramento, ca USA
Thursday, October 15, 1998 at 01:38:07 (EDT)

Greetings. I am a Chronic Paroxysmal Hemicrania (CPH) sufferer and have been since I was six years old (13 years). My husband and I would like to have a baby, but I have been told by my neurologist (and OB/GYN) that I should not use Indomethacin (or even Advil for that matter)while trying to conceive. I read that once pregnant, clusters tend to cease in women. I've been drug free for a week now, but I don't know if I can do this. Oxygen doesn't help...I tried it several years ago. Since my pain is chronic, I never get a break, but it does vary in intensity. I'm looking for someone who may have been in this same predicament before.
Kristy
Amarillo, TX USA
Wednesday, October 14, 1998 at 23:26:44 (EDT)

I am a 28 year old who has been suffering since age 21. Was involved in a automobile accident which caused may have been the cause of my attacks.
Jason Hurst <jhurst@redrock.net>
St. George, Utah USA
Wednesday, October 14, 1998 at 19:39:53 (EDT)

I've had clusters since I was about 16, but didn't know what they were at the time. I am now 29 & am in the middle of a cycle now. I am also unusual in that I am a woman and clusters occur mostly in men. I just read somewhere yesterday that only about 1 out of 1,000 women get clusters...lucky me (yuk!). My neurologist & I are now trying to find the right medication to get rid of them...wish me luck!
Edra Thompson-Hoffman <none; using library pc>
Atlanta, GA USA
Wednesday, October 14, 1998 at 17:50:07 (EDT)

Started getting the drasted monsters back in '82. Thought I was going to die. Unfortunately, I was in the military and as several of you can attest to the mis-diagnosis of this beast, I too fell victim. It wasn't until the fall of 96 when a neurosurgeon finally hit the nail on the head (no pun intended). Ergotamine and Caffergot were prescribed near the end of the cycle. Remission has been friendly for two years now, but the telltale signs of an upcoming onslaught have been hinting to me. 2 years. Kind of lucky. But with the C/H's, any amount of time is lucky. PS. Thanks for the great website and thanks to everyone for the insight. Hang in there.
Ken Sweet <Ken.Sweet@strongbrands.com>
Northbrook, IL USA
Wednesday, October 14, 1998 at 16:46:35 (EDT)

I've been suffering these blasted things since my early twenties. They've been getting more severe as I get older, and am now 39. I have two brothers also suffering them, we obviously inhierited them from dad. He was also a sufferer. I am happy to know I'm not alone. Who, if anyone is doing research into these headaches?
Jim Philopena <jim.philopena@ibm.net>
APO, AE USA
Wednesday, October 14, 1998 at 13:40:47 (EDT)

I have managed to cope with these headaches for 15 years, since I was 12 years old. I have tried every treatment available, finding the most consistent relief from oxygen. The first bout of headaches lasted 10 years, with 2 headaches every day. In my early 20's I began to have three month breaks between cluster events. Yet most recently, the headaches were no longer helped by oxygen. In an effort to manage the pain my doctor tried to use Imotrex as a preventative treatment. This lead to a serious overdose as the medication gradually built up in my body. We all know what a cluster feels like, well let me tell you, the rebound headache from the Imotrex made a cluster feel like a walk in the park, I am not kidding, be very careful with this drug. (The accidental overdose put me in the hospital for a couple of days). My physician then tried propranalol, and to my surprise it worked in 24 hours. I have been cluster headache free for 5 months!!!! I will keep you posted.
Paul Sward <paulsw@interlog.com>
Toronto, ON Canada
Wednesday, October 14, 1998 at 11:22:48 (EDT)

Very glad you are here. Looking for short list of symptoms (although i know i have them) and solutions. Also, how many women suffer? Add me to list.
Sami <jnh@gateway.net>
USA
Wednesday, October 14, 1998 at 10:11:37 (EDT)

I have struggled with episodic cluster headache for 22 years. I often fantasized about trying to form a cluster support group. I thought about the other lonely sufferers around the world, their pain compounded by their alienation. I am so thankful that the internet has made it possible for us to interact and lend each other support as a special community. I give thanks to the enterprising people who developed this site, and those who developed The Cluster Headache Homepage. I have learned so much about cluster over the years, and am learning much more now. Three important things to keep in mind: 1) through internet connections, it may now be possible to do larger scale studies of cluster than were ever possible before at local levels; 2) everyone who has cluster must read "Migraine" by Dr. Oliver Sacks, 3) you are not alone anymore! (Sotski is my internet name; e-mail welcome at sotski@aol.com).
Sotski <sotski@aol.com>
Cincinnati, OH USA
Wednesday, October 14, 1998 at 00:00:51 (EDT)

I am a double sufferer- I have migraines and clusters. I am 49 years old. I have had migraines all of my life- one headache a week and a migraine a month. In 1996, I started getting the clusters and had them for about 4 months. I had none in 1997. In 1998, I started up again. I have been having about 3 clusters a week or more and sometimes 2 in 1 day. About 95% of them hit between 1AM and 4AM. Most of the migraines hit from 5AM to 6AM. Im very interested in herbal remedies rather than high powered medicines. I have been taking feverfew twice a day and have had the migraines greatly diminish. I have been taking cayenne for high blood pressure and have kept it under control. I am going all through the herbal libraries to see what is available for clusters. THEY ARE NO FUN AT ALL! A statement like that deserves all caps. Nice to be able to write you about it. Barry Keller
Barry Keller <blkk@juno.com>
Warren , PA USA
Tuesday, October 13, 1998 at 19:41:26 (EDT)

My last full-blown headaches were 18 months ago. I now have medium to strong pain in that same location for 3 or 4 months at a stretch--almost like a lid has been put on a cluster headache so that instead of exploding it simmers for a long time.
James Crandall <jcrandall@chireader.com>
Chicago, IL USA
Tuesday, October 13, 1998 at 14:39:04 (EDT)

5th year, and every year I forget their coming until its too late. I pray this is the last year. Ever notice how wonderfull life is once their gone. Even if they hang around for the rest of my life I thank the lord it isn't something more serious and threatning.
lehne kyle <misterbucks@hotmail.con>
houston, tx USA
Tuesday, October 13, 1998 at 12:37:51 (EDT)

What's the Relief for this condition???
Robert Cartagine <rcartagine@amercard.com>
Marietta, GA USA
Tuesday, October 13, 1998 at 11:43:15 (EDT)

I am interested in looking for info about the headache institute in conneticut. Is there anyone who has been there, or heard anything about it? I am a cluster headache patient and trying to find more info on some other type of relief besides imtitex.
janina k. <Archer 102>
haledon , n.j. USA
Tuesday, October 13, 1998 at 10:54:43 (EDT)

I was just diagnosed with cluster headaches. And I would like to know as much as possible, due to the fact I am alittle scare. Please help me!
Yolanda Williams <williy@harada.com>
Novi, Mi USA
Tuesday, October 13, 1998 at 10:49:56 (EDT)

Diagnosed with c/h 27yrs ago, thought I was alone...... Hell theres a bunch of us !!!! Good luck , and lets find a way to beat these damn things.....
Rick Northon <rnorthon@aol.com>
Poulsbo, Wa USA
Tuesday, October 13, 1998 at 00:21:39 (EDT)

My sister suffers with terrible migranes. Shes had a gamaknife proceedure NO RELIEF!! She goes to the hospital at least once a month for a special shot that knocks her out for a couple of days. She takes so much medicine that she can't get life insurance she uninsurable. My whole family is so worried about her. She's a 38 year old mother of two teenagers and wants so desperately to be well.!!
Sharon Andress <sharonandshad@mindspring.com>
Talladega, Alabama USA
Monday, October 12, 1998 at 18:01:34 (EDT)

Thank you so much. You have no idea how much this helps. I am an 18 year old female in my freshman year of college. my clusters began only about 2 years ago. Noone believed that i was in as much pain as i seemed. It is good to know that there are others out there that understand me. My mom and i began researching my headaches because no doctor would take me seriously. Now i know for a fact that i have CH. These clusters rule my life. I have to leave my class if i get one during the day. I can barely walk back to my dorm because the sun pierces through my head. I don't know how to deal with these and i have no medicine for them. Please help me and send me any ideas. I am too young to have this ruining my college life. Thank you.
Lesley DeCastro <ldecastro@mindspring.com>
Birmingham, AL USA
Monday, October 12, 1998 at 00:01:58 (EDT)

I have been a sufferer for 22years and have found a lot of usefull iformation from your pages. Well done. Tony.
Anthony Davy <Anthony@ajdavy.force9.co.uk>
Okehampton, England
Sunday, October 11, 1998 at 17:36:56 (EDT)

This is my first visit to this site. I am a 43 year old male who had bee pain-free for 15 months after taking prednisone. I recently gave some blood and my clusters returned exactly two hours later. That was over 3 weeks ago and my clusters have returned with a vengeance! It seems as though they are trying to make up for lost time! Prednisone is not working at all for this cycle. My doctors are not much help which is why I looked you guys up. Perhaps collectively we can come up with a "cure-all". I really appreciated reading your comments and think that maybe oxygen should be my next course of action. One final comment I have is that if we ever want to prevent this horrible illness then early detection is the key. I was knocked unconscious due to a head injury way back in high school. Who knows, this could be a risk factor, along with heredity and other factors that would raise "red flags" for doctors in their pursuit of remedies and possible prevention. So each and all of your comments are important!
Pete Lund <DeePeter@aol.com>
Woodbury, MN USA
Sunday, October 11, 1998 at 15:06:50 (EDT)

I have had headaches all my life. I wish one day we can find a way to cure this for everyone!
Jason <raja-x@msn.com>
clovis, ca USA
Sunday, October 11, 1998 at 14:28:51 (EDT)

Chronic sufferer since 1982. 1 to 5 attacks per night. Very occasional nights with none.
Marcus Pennell <marcpen@hotmail.com>
Brighton, U.K.
Sunday, October 11, 1998 at 01:30:49 (EDT)

After almost two years, my clusters have just come back. I had a cronic case for almost ten years, and then they just stopped. I had the most wonderful time with life for those two years. I still woke up at 1:00AM, but the headache wasn't there. Well here I go again, another ride into hell.
Stephen Klimstra <vindo@mtco.com>
Metamora, Il USA
Sunday, October 11, 1998 at 00:38:07 (EDT)

Suffering for 17 years Take pure oxyagen and intrex shots - sometimes help When they peak - wife takes me to hospital so intense that I have to get on my knees in back seat of car would like to talk or hear from another I can be reached at on my secone e-mail add too mot.1@juno.com hoping to heare frome somewone.....bill
Bill Kimmes <wialdcat@aol.com>
Foxboro, Wis. USA
Saturday, October 10, 1998 at 21:27:01 (EDT)

Suffering on and off for 17 years Would like some input
Bill Kimmes <wialdcat>
Foxboro, Wis. USA
Saturday, October 10, 1998 at 20:58:23 (EDT)

I am looking to start up a support group for cluster sufferers in or around the central San Joaquin Valley area of California... Merced, Modesto or Fresno. I am from Mariposa in the Sierra foothills. Please contact me directly at darose@yosemite.net
Don Rose <darose@yosemite.net>
Mariposa, CA USA
Saturday, October 10, 1998 at 16:39:13 (EDT)

Does anybody know of any natural (i.e. herbal)stuff that works for clusters?
Gerhard Steenkamp (Jerry) <mpi@raua.rau.ac.za>
Johannesburg, South Africa
Saturday, October 10, 1998 at 08:42:28 (EDT)

Looking for medical help in South Africa for Cluster (chronic)(2 years suffering without relief whatsoever). Also like to link with anybody with practical advice. Anybody in my country, even in Johannesburg? Or from anywhere in the world, just help, please!! I am 40 years of age, male, Afrikaans and English. Thanks for this amazing page.
Gerhard Steenkamp (Jerry) <mpi@raua.rau.ac.za>
Johannesburg, South Africa
Saturday, October 10, 1998 at 08:34:23 (EDT)

Chronic clusters, undiagnosable(?) chest pains, cataracts, Restless Legs Syndrome, Reiter's Syndrome (arthritis, strange recurring "infections" (ears primarily), memory problems, insomnia, chronic fatigue and a great wife.
Barry Myles <bmyles@msn.com>
New Market, MD USA
Saturday, October 10, 1998 at 01:56:48 (EDT)

Chronic clusters, undiagnosable(?) chest pains, cataracts, restless legs syndrome, Reiter's Syndrome (arthritis, strange recurring "infections" (ears primarily), memory problems, insomnia, chronic fatigue and a great wife.
Barry Myles <bmyles@msn.com>
New Market, MD USA
Saturday, October 10, 1998 at 01:55:50 (EDT)

I had to have brain surgery 2 years ago. I had a cyst on my memory glands which was restricting the water flow around my brain. It caused a headache like I have never had before. I finally had a MRI and they found it. Well, that surery was hell in it self. My memory is not at all like it was before the surgery. So, now I get these headaches that last for about 3 to 4 months. I have only had 2 spells so far. The last one I had my brain surgeon thought it was the hardware from my surgery. So, he went in and took them out, thinking that was going to solve my headache problem. I had to have screws in my skull to hold the bone together for it grow back together. It grew back very well. But now I have these headaches like I have never had before. They are taking a toll on my marriage of 12 years. And time,(which you can never get back) away from my 2 kids. I am only 30 years old and I have had so many things happen to me medically it is hard to keep smiling sometimes. But I am really trying hard to keep my head held high and fight this next obsticle in my way. I am just SO thankful that there is someone else in the world that can relate to the pain that I feel. As I was reading everyones letters I was crying because I knew someone else knows what it is like to have cluster headaches. If anyone would like to e-mail me feel free:-).
Sande Mayfield <sandeg@hotmail.com>
Atoka, OK USA
Saturday, October 10, 1998 at 00:41:40 (EDT)

Im glad iam not alone,but sorry that others have to go thru this hell.
Tom Heilman <tandd heilman@home.com>
El Cajon, ca USA
Saturday, October 10, 1998 at 00:38:11 (EDT)

Just discovered this site last night. I don't know whether to be glad or sad. Since I've never met anyone that actually had these recurring terrors, it's a comfort to find a place where EVERYONE understands. However, it's more than a little sad to see that there's so many of us. I've endured these headaches for 20 years. Except for Imitrex injections, nothing (and the list is enormous) has consistently helped (although the Percodan did make the intervals between attacks pleasant :)) During my last major attack, after a 6 week cycle on my left side had subsided, it began anew on my right. Lasted 2 more months. My doc said it may mean my cluster cycle is fading. Has this happened to anyone? If so, please e-mail me with your experience.
Michael <mgentry@gateway.net>
ky USA
Friday, October 09, 1998 at 18:50:24 (EDT)

Wow! It really is amazing to finally find people who know what it's like. I've suffered from cluster headaches for 3-4 years now, ever since I broke my neck. I was lucky enough to recover 100%, but I also often wonder what life would be like without needing oxygen within reach. Maybe someday, but until then I've found people who actually understand the pain.
Todd Amundsen <lwmunsen@massed.net>
North Andover, MA USA
Friday, October 09, 1998 at 16:59:59 (EDT)

This is my second entry. I am so excited about this site! I can't believe that there are so many people out there who know what I go through. Anybody out there who wants to talk with other sufferers, please please feel free to e-mail me. I would love to hear from you!
Dianna Haffner <psychobab@gurlmail.com>
Ypsilanti, MI USA
Friday, October 09, 1998 at 16:44:33 (EDT)

Great site!
Jim <jriley@cyberportal.net>
Laconia, NH USA
Friday, October 09, 1998 at 16:32:31 (EDT)

I am listing my husband in your guest book. He is in the middle of a cluster headache cycle. We are looking for treatment for someone who has had a heart attack. His doctors won't let him use the Ergotomine inhaler which he had such good luck with. At the present time, he is relying totally on Oxygen. At times this is not practical. Is any one else in the same boat and what have you found that works??
Teak Edgeworth <edgeworth@salisbury.net>
Salisbury, NC USA
Thursday, October 08, 1998 at 20:14:24 (EDT)

This is all new to me so don't get frustrated. I am a new comer to the Internet but I am not a new comer to the Cluster Headaches. I am sure glad to know that I am not the only one out there that suffers from these HORRIBLE ATTACKS. This is a great thing and a great place to find. I have been suffering from Cluster Headaches for about 14 to 15 years know and I still have not found an answer to many of questions. I have found a Doctor whom is a Neurologist and she is actually the only person who has actually tried and has helped somewhat for the last 7 years for me. If anyone does see this PLEASE E-MAIL me. I would really enjoy speaking to someone who actually truly knows the PAIN and AGONY that we really go through. Thankyou to all and to whomever does respond. But please be PATIENT for I am not only new to the Internet but I am also BLESSED for this is my time to have the Lucky Opportunity to have these wonderfull headaches to be around. So if I don't answer Immediatley you all will know why. Thanks Again to everyone.:) Take care and I hope to hear from someone. A Fellow Sufferer
Scott Kephart <honeypoo@gte.net>
USA
Thursday, October 08, 1998 at 18:24:09 (EDT)

It is great but sad to know that so many people suffer as I do. I have had cluster on and off for 26 years. I started getting them when I was 12 or so. I used to ge them at math class and my parents thought I just wanted to get out of school/pcycosymatic etc. I went to doctors was told I had sinus infections and had holes punched in my nose to cleanse them. I haqve tried a lot of the drugs over the years. These are the ones that have helped me. 1. Ergo drugs 2. Imitrex 3. Oxygen and most recently acupunture. However they all stop working generally after one bout (one series). I have gone a year or two without any clusters only to have them come back worse and more frequently and I am currently ahving them again now. Thanks for the site Feel free to E-mail me. Jeff Koam @ Integritytalent@worldnet.att.net
Jeff Koman <Integritytalent@worldnet.att.net>
Burlington, MA USA
Thursday, October 08, 1998 at 18:11:19 (EDT)

I have a new email address; thought I would re-register. I am a fifty year old male who has suffered from ch for about twelve years now. Have done all the drugs...with little effect...the headaches continue. I have discovered a defense, however; I have been using oxygen now for about a week, and it stops the pain EVERY TIME!!! I am about done with this cycle and am wondering if the 02 has helped stop it. CHECK WITH YOUR DR. before trying this remedy. Bottom line: it actually stops the pain (within ten minutes); no more waiting for the imitrix to take effect. Good luck!!!
rick ackerman <bluesrik@aol.com>
germantown, oh USA
Thursday, October 08, 1998 at 14:04:14 (EDT)

Hi. It's really nice to know that other people know how bad the pain really is. The people around me try to understand, but they just have no concept. I am 30 years old, and have been suffering from cluster headaches for about 12 years. I get a cycle of headaches about every 12 to 18 months, and the cycle always lasts a month. Usually I just take Vicodin, although it does take a while to start working. I haven't tried Imitrex or oxygen, which I've gathered from reading others' comments are the only things that work. My doctor is very understanding and helpful; she will prescribe anything I'm willing to try. Last year I read an article in the University of Michigan's student newspaper that talked about a possible correlation between cluster headaches and sleep disorders. A study found that cluster headache sufferers who have been treated for sleep disorders no longer get cluster headaches. It was not a good study, they admitted, because no one was willing to be in the control group. Has anyone out there heard of this study and/or participated in it? I would love to hear from anyone who has tried this avenue.
Dianna Haffner <psychobab@gurlmail.com>
Ypsilanti, MI USA
Thursday, October 08, 1998 at 11:04:32 (EDT)

It's just great to know that there are other people around that know how painfull Cluster Headaches are. I have suffered for 20 years on and off and still can't come to terms with the pain. I have never yet met anybody to talk to face to face that suffers from them. Thankyou for a wonderful web site full of so much information and interesting facts.
Sue Wilson <bawilson@ihug.co.nz>
Auckland, New Zealand
Thursday, October 08, 1998 at 02:23:53 (EDT)

Hi my name is Linda and I have been in this Hell for over 20 year`s. The story`s I have read sound just like me. Mine start with a consant pain behind one eye or the other. I wake with a headache I go to sleep with a headache. There alway`s there they never live. Presure build`s behind my eye`s,Goes through the whole head, Down into the neck and shoulder`s. Tighting in the jaw`s. I cant stand light,noise, sound,or eat. I cant care for me or my family when this eveil strickes.I think this make`s me more mad than anything I cant take care of the one`s I love the most. They put me down in bed 2-15 day`s out of the month sometime`s more. My body get`s so tense all I want to do is climb out of my own skin. And yes I have thought of ending it all. But my family and my faith would not let me do such a thing. I want to thank who ever started this site. Thank`s is not enough for what you have done. It`s a way to help copy with the devil I have in my head and and body. I am glad I am not alone in this. But at the same time I wish I was. I would never wish this pain on anyone or anything. I am alway`s here. So if anyone need`s to talk PLEASE feel free to e-mail me. e-mail abby is; buzzboy@iland.net
Linda <buzzboy@iland.net>
Warrensburg, M.O USA
Wednesday, October 07, 1998 at 22:56:30 (EDT)

My father in-law has been suffering from these headaches for many years. The doctors put him on some type of oral medication at one time but then took him off of it because it was highly adictive. He refuses to return to the doctor now. He has asked me to do everything in my power to find out what he can do for himself. The pain is getting to be too much. Please, if you have any ideas or comments e-mail me at st911@hotmail.com Thanks!!!!!!!!!!!
Shelly <st911@hotmail.com>
Sigourney, IA USA
Wednesday, October 07, 1998 at 14:12:12 (EDT)

After 5 years lonely suffering I have now found a decent knowledgeable doctor and my chronic clusters are under control using 240mg sustained release Verapamil (Securon) and Imigran injections for the occasional breakthrough headache. I would be interested to hear from anyone who has used the above meds over a long period ie do they still work ! and would be only too happy to try to provide support or advise to anybody suffering
Nick Elliott <NiAn@msn.com>
Leicester, UK
Wednesday, October 07, 1998 at 12:13:06 (EDT)

My son is in his second bout of cluster headaches. My brother-in-law had these headaches and at 41 got up in the middle of the night with one and died in a few minutes of a massive heart attack. Does research show that kind of relationship? I need information. Thanks. Ann
Ann Hines <ahines@bcinet.net>
Oak Island, NC USA
Wednesday, October 07, 1998 at 11:09:42 (EDT)

my name is mark and i have been suffering from clusters for about 12 years i am 38 years old , would like try accupuncture treatments and would like some input from others who have tried this and or other treatments or if you just want write about the hell it is living with the pain
Mark Parker <www.darl305@aol.com>
smithville, mmyo USA
Tuesday, October 06, 1998 at 19:54:02 (EDT)

I've had three episodes each lasting about 4 months with 3-5 years between each cluster. The last time (3 years ago) oxygen worked great.
Jim Fredricks <jimfred@mindspring.com>
Atlanta, GA USA
Tuesday, October 06, 1998 at 16:25:54 (EDT)

am in my second excruciating cluster, would really appreciate some handy hints on surviving the attacks 3-5 in 24 hrs. Thanks
Maggie Davidson <m.davidson@herts.ac.uk>
England
Tuesday, October 06, 1998 at 15:05:03 (EDT)

My wife has had the headaches for six years, looking for help.
Rick S <SPTR1@pop.prodigy.net>
tucson, az USA
Tuesday, October 06, 1998 at 14:24:30 (EDT)

This past weekend I took my mother to the ER with what was later diagnosed as her first cluster headache. Very scary business. I've suffered with migraines for a few years but this made my attacks look like a walk in the park. I am happy to find this well-designed and informational website. Thanks so much!
Becky Wallace <modsquaw@hotmail.com>
St. Paul, MN USA
Tuesday, October 06, 1998 at 13:19:25 (EDT)

Hello i must say a big Thank You for this site,at last i have found i am not the only one suffering this terrible pain! I have suffered for about 11 years only one specialist in London ,England could eventually diagnose me,after 5 years of being treated for migraine.My present doctor tries his best but i feel no-one really understands.My present doctor even reads this web page which i gave to him for information. Keep up the great news i'm constantly looking for tips etc...from other people to help keep the monster away!! Anyone who wants to exchange there 'remedies,tips'etc please e-mail me perhaps we can assist each other.
MARK WINCH <m.winch@cableinet.co.uk>
CANVEY ISLAND , ES USA
Tuesday, October 06, 1998 at 04:53:52 (EDT)

My husband suffers from these headaches and each time they seem to get worse. I am looking for a support system to help us deal with his disorder and a way to help ease the intense pain he suffers. Thank you. Donna H.
Tom H. <tanddheilman @home.com>
El Cajon, Ca USA
Tuesday, October 06, 1998 at 00:32:04 (EDT)

This is my second entry, as my e-mail address isn't very clear on the message board. I am not a cluster headache sufferer, but my brother suffered from them for 11 years. I had said that he took his own life at the age of 31 last May. I am 23 years old. Myself and my family are at a loss of how to help anyone. With my brother it seemed as though doctors really couldn't understand or wouldn't try to understand. While reading my last entry into the guestbook, I realized that it may have been a little awkward. I don't really know how to talk about it, except to say that I am so sorry for all of those who suffer from these. Despite the physical symptoms that are notable while suffering from a CH (i.e. runny nose, bloodshot eye(s), pasty and pale skin), I think part of the problem with doctors is that they can't SEE what's going on inside the mind and brain. If it were a different form of illness in which doctors would be able to really know how painful they are and how it does affect every aspect of the suffer's life, I believe they would be more willing to find solutions. I have cancer. When I was diagnosed, I was put on an intensive chemotherapy program for a little over a year. I am now considered "cured" although I am in remission and have been for five years. But I swear, that was NOTHING compared to what my brother suffered, partly because of the constant frustration of others not understanding, and knowing that there is no cure as of yet. That is why I want to help in any way that I can. I know while reading some of your entries, I noticed that some people haven't tried the Imitrex injections. I know that these injections lent themselves as miracles for my brother. He had to inject it in the very first onset of the headache for it to work, but it stopped it dead in it's tracks. They are very expensive, however. But if anyone can benefit from them, please try. This message may be insignificant to some, but I would love some responses. My address is: andrea_nan@yahoo.com I am open to any and all suggestions you may have. Hold on tight to your loved ones. I know it may get to a point where you may pull inside, as to not "bother" or "complain to" the ones you love. But please know, coming from someone who has been on the other side of these beasts, that the complaints you have probably seem much more bothersome to you than to your loved ones. Talk about them, try to explain to them about how really painful they are. Don't suffer in silence. Sincerely, Andrea
andrea <andrea_nan@yahoo.com>
USA
Monday, October 05, 1998 at 18:43:40 (EDT)

This is my second entry, as my e-mail address isn't very clear on the message board. I am not a cluster headache sufferer, but my brother suffered from them for 11 years. I had said that he took his own life at the age of 31 last May. I am 23 years old. Myself and my family are at a loss of how to help anyone. With my brother it seemed as though doctors really couldn't understand or wouldn't try to understand. While reading my last entry into the guestbook, I realized that it may have been a little awkward. I don't really know how to talk about it, except to say that I am so sorry for all of those who suffer from these. Despite the physical symptoms that are notable while suffering from a CH (i.e. runny nose, bloodshot eye(s), pasty and pale skin), I think part of the problem with doctors is that they can't SEE what's going on inside the mind and brain. If it were a different form of illness in which doctors would be able to really know how painful they are and how it does affect every aspect of the suffer's life, I believe they would be more willing to find solutions. I have cancer. When I was diagnosed, I was put on an intensive chemotherapy program for a little over a year. I am now considered "cured" although I am in remission and have bee
andrea <andrea_nan@yahoo.com>
USA
Monday, October 05, 1998 at 18:43:31 (EDT)

I was very pleased with this website. It was encouraging to know I am not the only suffer, even though it feels like it. I have had cluster headaches for 6 years. This year has been the worse. I have had the headaches for 6 months. 2-3 a day. I just got ouf of the hospital and the dr tried the DHE. We had to stop the IV after 3 treaments due to the pain in my arties. I am now on Depokate 5 a day 250 mg and still no releif. I go back to the dr this week and I am sure we will change or up the dosage on my medication again. I am 38 years old. I have had
Fred V. Johnson <nickis@airmail.net>
Houston, tx USA
Monday, October 05, 1998 at 10:02:56 (EDT)

I HAVE SUFFERED FROM CLUSTERS FOR ABOUT 12 YEARS AND THIS IS ALL NEW TO ME SO I WANTED TO GET ON THE GUEST LIST FOR WAYS OF DEALING WITH CLUSTERS AND COMPANIONSHIP FROM OTHER SUFFERS ALSO I AM CONSERDING ACCUPUNCTURE AND WANT TO KNOW IF ANYBODY ELSE HAS HAD ANY LUCK WITH THIS TREATMENT
MARK PARKER <ww.darl305@aol.com>
smithville, mo. USA
Sunday, October 04, 1998 at 21:25:32 (EDT)

I have been getting cluster headaches since 1984. The headaches have appeared every four years since that year. There is no specific time period during the year that they arrive. I have had cluster headaches during all the seasons. The only thing I can count on is that they will appear every fourth year and they last longer in time (months) then when I first started to get them. Initially I was able to treat them with Ergostat if I could detect an attack coming on and took the pill immediately. During my last episode I tried oxygen and that worked on a temporary basis, since the headaches would come back after a short time. I asked my physician to let me try steriods which I took for seven days. During that period, I did not get a headache till the very last day which I treated with Ergostat and then they went away. Iam 56 years old and I am not looking forward to the year 2000 because of this malady. I have been treated by the neurology staff at Henry Ford Hospital in Detroit, Michigan.
Joe M. Glembocki <GLEMBO22@AOL.COM->
Livonia, MI USA
Sunday, October 04, 1998 at 12:24:24 (EDT)

i am the wife of a wonderful man who sufferED with cluster headaches. I was determined that I (yeah,right) was going to find something to help my husband. I read everything I could get my hands on! I never realized until I read these articles how excrusiating these headaches really are. It really was hard for me to believe that he could really be "in that much pain". I contacted a neurologist and they tried a series of steroids on him and within no time his headaches were gone. It has been one year and 1 month since he has had a headache! The doctor told him that if the steroids didn't help he could take injections too! He never had to take ANY injections. The medicine he took was called methylprednisolone 4mg. I felt like I owed it to all of those who suffer this bit of information. If you have already tried this and still suffer, help is out there. It is just really hard to find! Don't give up! Be grateful that there are web sites like this to help you! God Bless You, Toni
Toni Hazelbaker <hzlbkr@indy.net>
Anderson, In USA
Saturday, October 03, 1998 at 23:48:10 (EDT)

I am a sufferer of cluster headaches myself,they are at this time in remission thank god.Mine come and go around the winter time,not a good time of the year for me.I try to deal with them the best i can when they do strike. there is no pain in the world like a clusterheadache.
scott smith
cincinnati, ohio USA
Saturday, October 03, 1998 at 17:09:00 (EDT)

Hi Thanks a lot for hosting this wonderful site. I would just like to say hello to you and add my name to the list of many sufferers of Cluster Headaches. My heart goes out to you all as I am now 50 and I have been getting the headaches ever since I was 17, so I do know how you all feel. Let's hope one day a solution will be discovered to end all these pains we have. Keep your spirits strong and never give up. Best Wishes
Dave Watkins <davwat@iinet.net.au>
Perth, Western Australia
Saturday, October 03, 1998 at 11:15:35 (EDT)

I have had CLUSTERS for the past 15 years and have had little relief if any. I am 42 yrs. old and and have tried every thing that is on the market from beta blockers to I-V"S. I am currently taking 900mg Lithium daily, Butalbit tabs,Imitrex 50mg tabs & Imitrex nasal sprays. The Imitrex work but when you wake up every two hours every day with that same pain it is just to late sometimes to do anything but suffer. I am going on 18 months with no relief from the nightmare. I usually only get a month off a year but not so far. I'll get buy. Just sorry to see that there are so many of us out here that have to suffer. Best of luck to all and just keep praying like we always do day after day after day.
Tony Baker <nvbakers@lnett.com>
Wendover, NV USA
Saturday, October 03, 1998 at 09:40:15 (EDT)

I get clusters every 18 months, and have for over 20 years. Not as bad as some peoples, but bad enough!
Edward Forwood <eforwood@durlacher.com>
London, England
Saturday, October 03, 1998 at 07:09:06 (EDT)

I feel sorry for you guys !! since I've suffered with Chronic Refractory Cluster Migraines for approx. 24 years(most were an 11 on a scale of 1 to 10 !!) I am totally disabled from them @ 44 years old. Hope we can learn something from each other.
Rick Silling <silling@webtv.net>
Portsmouth, VA USA
Saturday, October 03, 1998 at 00:36:49 (EDT)

I have chronic cluster headaches. I usually have 5 a day for a week or two, then a few days to 10 days off then cycle begins again. I have insomnia and trouble with short term memory during an attack. Would like to chat with anyone. We can complain to each other. No one can believe what this is like unless they have experienced it. The headaches have affected every area of my life. I would like some case historys to compare to my own.
mark W. <mworleybird@hotmail.com>
Artemus, Ky USA
Friday, October 02, 1998 at 23:36:57 (EDT)

I had suffered from cluster headaches a little over a year ago now. They were almost the worst pain in my life i have endured.Next to my DAD and MOM passing away.Anyone who has had the unlucky pleasure of haveing to put up with this UNGODLY PAIN is welcome to contact me to chat ect.I know for a fact that it is a form of HELL that almost no one can or would be able to understand.Mine have not come back as of yet but the Docters,for what they seem to know about them seem to feel that they may be back. Well i can wait!!! ,once is plenty of that type of pain. SEE YA
Frank DeForge <Frank DeForge@aol.com >
Barre, VT. USA
Friday, October 02, 1998 at 21:45:58 (EDT)

Need more information
Donna Maniscalco <sassydmm@aol.com>
Middletown, NJ USA
Friday, October 02, 1998 at 04:09:11 (EDT)

Are there any M.D.'s out there who are also sufferers of clusters?
bob <4b@ziggycom.net>
marion, ky USA
Friday, October 02, 1998 at 02:17:26 (EDT)

My son suffers with CH. I would take them for him if I could, it breaks my heart to see such pain. God bless each suffer. May we find relief. I will share all the information with Scott. Thanks for being here.
Sharon Steele
Statesville, NC USA
Thursday, October 01, 1998 at 16:19:37 (EDT)

Hello all------16 years of hell nose sugary, drug addiction etc. 4 years free of pain ,today is my 45 birthday, guess what i got? Cluster headachs again!!! =( oh well been there done that burned the t shirt but life goes on. guess i get to do some more searching for the cure!! drugs dont get it .nose sugary just made my nose crooked and now i learn to use my mind over matter. Im older wiser and know it will pass. I have done almost all the drugs ive seen on the pages here and tried almost all the head banging amd preasure points ,rocking ,moaning ,crying etc. but i know i cannot give up!!! Still have a good wife of 24 years and four children and thats what keeps me going!!! So please for all of you that have this terriable problem , dont give up!!! the thing that has helped me the most is shiatsue massage and accupunture------not drugs !!! watch out for food with msg and cheese products wine beer and nuts.If i can help you in any way please let me know!!! best wishes to all of you and god bless!!!!!!!!! =) sorry to enter twice but my e-mail dosent show right on the board. its viking_25@hotmail.com never give up!!! If i can make it you can too!!!!!
Butch Hands <viking_25@hotmail.com>
Henderson, nv USA
Thursday, October 01, 1998 at 04:58:26 (EDT)

Hello all------16 years of hell nose sugary, drug addiction etc. 4 years free of pain ,today is my 45 birthday, guess what i got? Cluster headachs again!!! =( oh well been there done that burned the t shirt but life goes on. guess i get to do some more searching for the cure!! drugs dont get it .nose sugary just made my nose crooked and now i learn to use my mind over matter. Im older wiser and know it will pass. I have done almost all the drugs ive seen on the pages here and tried almost all the head banging amd preasure points ,rocking ,moaning ,crying etc. but i know i cannot give up!!! Still have a good wife of 24 years and four children and thats what keeps me going!!! So please for all of you that have this terriable problem , dont give up!!! the thing that has helped me the most is shiatsue massage and accupunture------not drugs !!! watch out for food with msg and cheese products wine beer and nuts.If i can help you in any way please let me know!!! best wishes to all of you and god bless!!!!!!!!! =)
Butch Hands <viking_25@hotmail.com>
Henderson, nv USA
Thursday, October 01, 1998 at 04:54:11 (EDT)

I get on the average, two clusters a day. They last for appox. one half an hour and are moaning painfull. I have been browsing your site and it seems that some get them more frequently and for longer periods of time. I just can't imagine. It must be utterly awfull. My heart goes out to you. I've not tried any drugs I just endure. It's hard to measure pain because you cannot really feel anyone elses pain so it's hard to put a measure on it. All I know is that its the most intense pain I have ever experienced. I've suffered migranes throughout my life and my mother was a chronic headache sufferer with no relief. My migranes havent been back for sometime now, but the clusters are regular. My symptoms are, first an overtired feeling then my head gets heavy, sore neck then a temple pulse. This is a sign one is coming on. I have to leave my workspace and get air, then the wave of intense pain comes, my right eye weeps, my right nostril drips and my jaw aches like a toothache, also the right side of my neck aches. I moan, I rock, then another wave of the same hits. I'll get two or three waves then it subsides and I feel normal again. Touching the right side my head during this is painful also. If these clusters hit at home I get a little relief by riding them out by sitting in the hottub, keeping my body warm but letting the fresh air from an open window cool my head. Does anyone know if cluster headaches are a modern day ailment or have they been around forever. This site is somewhat comforting to know its here and informative to others who can't comprehend this suffering. Maybe with all this interaction a compiled common set of factors will lead to a cure. Doctors I've dealt with seem to have little information or help in this deabilitating disease. Collective internet information might help.
John <jevoy@axion.net>
North Vancouver, bc Canada
Thursday, October 01, 1998 at 01:20:28 (EDT)

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