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



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Hi, Im A 46 yr old male that have clusters since age 17. 2-3 Mo. duration every 2 yrs. My pain is located behind the left eye. It has been 5 yrs since last bout. 2 wks ago they came back! My attacks always start with a hitch or what feels like a cramp on the left side of my throat half way between my chin and collar bone about what feels like 2in. deep then the pain starts within seconds.Also a feeling that something is covering or washing over my brain.These things have ruined my life!!! Every time I really get rolling good they strike and i am not able to function. Jobs lost, opportunitys lost, ambition lost.and then after 1 mo. when the attacks are full blown the terrible depresion sets know what i am talking about. This time I am going to fight back and find a way to stop them for good! Most Drs dont have a clue or just want to treat symptoms keep you comming back for their lousy drugs.They seem to not take these headaches seriously. I was in er 3 times then admitted released christmas eve.The hospital neurolgist when I told him that the last time I had cluster headaches when they went full blown at the er they gave me Stadol injections with phenagrin which provided enough reliefe that i could handle the pain. I asked him if he would give me a scrip for nasal stadol he looked down his nose at me and said "I have a friend who prescribed stadol for his son and his son killed himself. And I dont prescribe narcotics for headaches." Well then I knew I was dealing with yet another incompitent and I thought, it was the pain that caused the young man to kill himself!! not the stadol!!! Or more precisly because his Dr. his father did not deal more aggesivly with the horrible pain!Anyway this is the way it is most of the time.Before I go I would like to mention some other effects I experence while in cycle. One is a heightened sense of smell I mean a super heightened sinse of smell. Another thing is since just before I started getting CH I noticed a clicking in my left ear I thought only I could hear it but I found out other people could hear it too.Other times when Im not in cycle I will go part blind in my left eye followed by seeing neon zizzag type patterns in the left eye only, these events last 5-10 min. then go away. Well didnt mean to cry so much to you , I could go on and on about the pain misery ect.But you know all that. Like to mention some things that help me during attack. #1, O2 at first sign sometimes abort.Ive been taking Zomig 2.5 mg it does help but Im down to 1 pill left and it takes 2 to be effective and I cant afford to refill. Im going to try flashs thing asap hopefully this wk. Will be glad to let you know.Sorry bout spelling and punt. God bless you all.
Don Nordhoff <>
Sadler, Tx USA
Monday, December 31, 2001 at 23:48:22 (EST)

I've suffered with episodic clusters for ten plus years. My last episode was five years ago. Then two weeks ago that peculiar/familiar feeling came over me in the middle of the night. It didn't last long, but I knew something wasn't right. Sure enough, it wasn't long before I had a full blown attack. When I was finally diagnosed with clusters several years ago (after many visits to different doctors), my neurologist gave me prednisone which stopped the head bangers. Then after four years in remission, they returned with a vengence. Tried prednisone again to no avail. Tried Imitrex injections and oxygen and they worked about half the time. Finally, my Doc put me on Inderal and that did the trick. Now, five years later, I'm back on Inderal which is keeping the attacks away, but is draining ALL of my energy. In the mean time, I'm looking for a doctor in the Orlando area who understands clusters. Would appreciate it if any of you could refer me. This site is a God-send! Nobody understands unless you have them, or unless you live with someone who does.
Noy Sparks <>
Oviedo, Fl. USA
Monday, December 31, 2001 at 22:12:00 (EST)

Hi..Trying to see what type of headaches I have. Ice Pick side of the head.Stuffy nostral opposite side.Lasts 20 min and telynol does help.I am a Liver transplant patient..4 years post. hopeing for the best.Thanks
Nancy L Snyder <>
Knox,, Pa. USA
Monday, December 31, 2001 at 17:41:48 (EST)

I am 37yrs old and started having (ch) about 6 months ago.When I first started getting them I thought they were sinus headaches.My gums and my teeth felt like some ones was pulling at the nerves.My ears would start to ache. Then one day I smelled something like burnt toast,and with that proceeded the worst headache I had yet to have. I now have this smell each time before the attack,which I have attacks at least lasting 3days out of every week so far. I have yet to find a med. to help for I tend to get sick to my stomache the pain is so bad.Does anyone else get a smell with these headaches ? and what could I use that would stay in my system if I get sick ? Can use any suggestions ! Thank You .....Roni
Roni <>
Langley, BC Canada
Monday, December 31, 2001 at 17:05:34 (EST)

I am a 37 year old woman who has been a sufferer for seven years. I have been able to control the HA with light therapy for the most part. There have been a few exceptions.The hardest part was being correctly diagnosed. I look forward to spending some time on this site and corresponding with some of the other sufferers. Bridget
Bridget Christie <>
Brazil, IN USA
Monday, December 31, 2001 at 13:23:38 (EST)

I realize that this problem usually strikes men, but there are a few of us women out there suffering from this. I had my first attack on August 11th, 2001. The cycle lasted for three months. It backed off for a total of two weeks and has come back. My dear husband is ready to kill any doctor that tells him that they can do nothing for me. I am a mother of three and work full time. These dang things have taken all of my sick time and has made me miss out on many milestones that my children have achieved. I am taking the med's as perscribed, but they seem to work for a week, and then stop. Has anyone else had this problem? All I want is for the pain to go away and for my life to become normal that too much to ask???
Shanna <>
Dover, NH USA
Monday, December 31, 2001 at 13:17:58 (EST)

I have been getting Clusterheadaches for ten years (and counting)now.They hurt so bad!!!!I dont even wish them on my worst enemy.I wish they would make a medication that actually works!!!!!
Bill. <>
Milwaukee., Wi. USA
Monday, December 31, 2001 at 11:39:52 (EST)

I have suffered from CH since the early fourties. I think that I have tried just about every medication available. Nothing seems to work. Have arrived at the conclusion that nothing will. Years ago I was told that they would disappear with age. No one could state which would come first. I am now approaching my seventy-ninth birthday & we are still neck & neck. After all these years I strongly suspect which will come first. It has been three years since my last go around. I have just now received the first indications (the which of I know so very well)& am preparing myself, mostly mentally. to live with the affliction for the next three months. Give or take a few weeks. Some twenty years ago the No.5 nerve in the Left side of my head was cut. All that accomplished was to deaden that side of my face. The CH just circumvented & continued on it's merry way. Myself, I would not from personal experience recommend surgery. Concentrate on Pain Relief. Tips that have helped me. Tylenal4 at first indication,a smearing of Ben Gay over the effected area & a cold block of ice held against the side of the head. A dark room with some nice music playing helps to distract you mentally from that horrible pain. Diet is vital. Avoid all of the known food triggers. The years have taught me to avoid sugar in whatever form it is served up in. Good for weight control as well. A day to day usage of Sansert, carefully monitored by your Doctor should help. I have spent many weeks in hospitals & was given an early disability pension by my employer. That was the only good thing that resulted from this horrible affliction. Wish me luck as I do each & every one of you.
Wilf Gillette <>
Oshawa, On Canada
Monday, December 31, 2001 at 08:06:53 (EST)

Hello Well, I don`t really know what to type....I almost cried when I found this site. I`ve been living with these headaches since I was 13 years old, I`m now 33. I`ve never met anyone with my problem till now. I started looking on the net for headache cures ( yeah right ) and found this place, GREAT !! Last night I had one of the worst ones I can remember, only about an hour, but VERY severe. I havent been able to find anything to help, save distraction on ocassion will sometimes help. Honestly I havent been to the doctor in over 5 years about them, because the last time I went the doctor made me so damn mad I wanted to hit him, I`m not the violent type, ya had to be there. Anyway, I am excited to look over this site, so......
John <>
Joplin, MO USA
Monday, December 31, 2001 at 05:31:53 (EST)

Hi. I'm a 40 year old male. Glad to see there's other people who understand! I've been "somewhat" diagnosed with CH. They started about 3 weeks ago. The reason I say "somewhat" is because I'm still waiting on my dr. to tell me what's really wrong. I've had the MRI and all the other test he wanted but he has yet to say for sure that's what it is. He says it's possible that's what I have. But after reading some of the messages on your web page, I'm feel sure it is CH's. They come on very srtong and last for hours. I have lost my life over the past 4 weeks. I hardly leave my house because I feel so bad. I can't sleep at night. I sleep during the day but not a good sleep. I have sharp stabbing pains that run from my temple to the top of my head. My scalp hurts. My left eye looks droopy or swollen. My nose stays stopped up. The pain is so bad that I cry sometimes. I cried Christmas day because they had gone away for a day and I thought my headaches were over but came back Christmas eve. I have been unable to work for the past 3 weeks. My dr. gave me the Imitrex, Amerge and Zomig. Nothing seems to really make it completely go away. I WANT MY LIFE BACK!!! Love your web site....added it to my favorites!!! Thanks again.
Ed Pigate <>
Darlington, SC USA
Sunday, December 30, 2001 at 21:39:21 (EST)

I have suffered wirh CH since 1983 and have found very few people that understand what it is all about, this site is exceptional. I haven't found many doctors over the last 18 years that have the skill to handle the CH, but am continuing to search. In the meantime I have to resort to self help. I have found that if I control my breating to short shallow breaths and hold it for about 10 to 15 second, I can usually get a headache to subside after 15-20 minutes if I catch it on the upswing. Just thought I would pass this along, I know that we all have tried everything under the sun to get rid of these things. If anyone needs to talk or just needs someone to lean on, please feel free to e-mail me. Thanks for your postins on the web site!!!
Marc <>
Memphis, TN USA
Sunday, December 30, 2001 at 10:04:24 (EST)

I had surgery on my brain stem, and a laminectomy. I had to go out of state and within days I was a maniac with the pain. Doctor's said I was hyper and gave me Darveset. I ended in ER in my home state and was admitted for rebound headaches. I was taking 2 Excedrin per day and 4 ultram, prior to surgery. No one realized that I was totally off these analgesics. The hospital doctor put me on DHE. I had relief and came home in four days. I had the migrane's from Nov 17th till today. I was then taking Medro Pax Steriods,Zenaflex and DHE nasal spray, Aleve, Ativan. No help! My Dr. wanted me to go on Depacote and Topmax. I read some message boards and researched these drugs and decided not to. I started Inderol and took 2 Aleve a cup of coffee and headache was gone. I hope it works tomorrow!!!
Marzy <>
Delray, Fl. USA
Sunday, December 30, 2001 at 01:50:33 (EST)

I have been using Stadol NS for the past 4 years about 5 times per week. I first try Immitrex Nasal spray but if it hasn't worked in 10-15 minutes I go to the Stadol as I have to get my sleep in order to work the next day. Anyone else with a long term history of Stadol use and withdrawl symptoms if Stadol not used for 2-3 days?
Patricia Shulist <>
Mississauga, ont Canada
Saturday, December 29, 2001 at 21:53:51 (EST)

i do not see my first comment--this is a test--to see if i screwed up! mary
mary gould <>
bellingham, wa USA
Saturday, December 29, 2001 at 14:53:35 (EST)

ouch! i have found that using a vibrating massage unit with heater on the side of my nose where my headaches cluster can help relieve the pain. perhaps others can try this too. i think it is rather like using labor breathing , or something--provides a distraction until the pain goes away. am also using imitrex, and a nose spray made by my doc, himself--contains afrin and lidocane (sp) a pain killer/numbing agent.
mary gould <>
bellingham, wa USA
Saturday, December 29, 2001 at 14:35:52 (EST)

I'm tired. I feel beaten up and thick as a brick. I had a set of CH 15 years ago and thought it was a thing of the past, The last three weeks have been hell, I'm scared to go to sleep, and only half functioning during the day...If I thought the end was near it might be something to look forward to, my CH last 2-3 hours and time seems to stop then...I've bounced through the ER and clinics with prescriptions and comments and it's like grabbing at leaves in a tornado keeping track...I cried when I found this site and read the opening pages... Craig
Craig Minielly <>
Oakville, ON Canada
Friday, December 28, 2001 at 15:52:17 (EST)

i'm only 14 years old and i have it. sometimes it is so bad i cant see. i stummble around half blind. my parents just think its from being tired.
abby <>
Friday, December 28, 2001 at 15:06:42 (EST)

Hello! I have suffered from CHs for 30 years, since my teens. They seem to be abating as middle-age sets in. I've found help using sansert, paxil, O2, ice, ibuprofen (3 tablets). I must avoid all exercise in the mornings. Bad cycles always start in late fall, and end in the spring. I think it relates to the pollen in the air and subsequent release of histamine in the body. (CHs used to be called histamine headaches.) In winter, histamine builds up and is released in large amounts, causing headaches. I wonder if there's a cure based on sniffing a powder containing pollen (!?). Great web site!
Dan Scholten <>
Carlisle, MA USA
Friday, December 28, 2001 at 13:38:23 (EST)

I was wondering if anyone else feels like a social reject after quitting alcohol altogether like me. 4 sips of beer and I can trigger a CH. It seems like the best trigger for me. I just finished a 20 day cycle and my brain is totally discharged. I'm 34 and have had these since I was 9 years old. Cure please, thank-you.
Robert R Wilson <>
Halifax, NS Canada
Friday, December 28, 2001 at 03:10:50 (EST)

I am a 35 year old mother of 2 children. I have been having CH since age 15. Every year they get stronger in intensity. I have tried many things. I found that 100% oxygen works really well in the beginning stages of the headaches. After a while however, it doesn't seem to work as well. I have found that with everything so far. Imatrex nose spray works well now, but you can only take so much of that. Sometimes I need more than I can have. I believe they are stress related and hormone related. I also think diet plays a big part. That is the hardest thing to change. It has been 2 weeks now since they started this time. It seems like much longer than that. The last time I got them was 2 1/2 years ago in June. The time before that was just horrid. I had just had me first baby, and got my first headache that same night. They lasted every night for a whole month! I was up with cluster headaches and trying to care for a new born all at the same time. Some how we seem to survive!!! I was very happy to find this site. It makes me feel better knowing there are many other people out there right now who understand what I am going through.
Lesley <>
Denver, CO USA
Friday, December 28, 2001 at 02:17:47 (EST)

i would like to talk to anyone that is going thru the same pain as i am, i have talked to some people that say they have cluster headachs but mine seems to be different then theres mine is like eating ice cream too fast and lasts around 20 min's at at time, if there is anyone out there please write me. larry
larry tinsman <>
magalia, ca USA
Thursday, December 27, 2001 at 22:12:30 (EST)

Hi, just thought I would stop in and see what was new, I feel bad about not being on the net lately but I don't feel bad about not having a round of clusters for over eight months. When the headaches stopped I went back to my regular way of life, OUTSIDE that's where I try to stay. (IMAGINE that Jsdgonefishing likes it outside).I just Know that any minute of any day now that it can and probably will start the visous cycle over . So if there is anything that I can do to help anyone out there(other than money,I'm struggling to stay afloat myself).But I do know what it's like to loose a job and lots of other things that go along with the rounds of cluster headaches.I just hope some one finds a CURE that works for us all.And will do what I can to help, Jsdgonefishing...
Jerry Davis <>
New Salisbury, In USA
Thursday, December 27, 2001 at 15:27:07 (EST)

I am a 39 year old male, who has dealt with the headaches for the past three years. Yesterday was the first time that I had an attack happen during the day and not in the middle of the night. That is when I finally went to the doctor at the advise of my wife. After talking to him, he started to give me the traits before I could finish. That is when I found out about headache clusters.
James L. Aronhalt <>
Westminster, MD USA
Thursday, December 27, 2001 at 14:07:16 (EST)

Hi! I'm a 15 yr old gurl and i have been having headaches since about 1.5 yrs ago and tehy are progressively getting worse... I didn't know what they were at all and thought that they must be related to my daily routines etc.. and u know what i eat or when i sellpp or stress etc but after reading this I was like Ohhh so myabe this is what i have .. but i'm still nniot sure. coz i sdun have all teh sympotoms.. and I am not as extreme as sum people have them. I always wonder how i can get rid of them.. as my daily panadol intake goes up more and more and sumtimes i try not to take panadol for a whilr e and see if anything happnes. But I am hopping that sooner or later these headaches wil stop . They are painful annoying and no onwe seems to understand. but I hope there will be a permanebt prevention in the near future...:)
SA Australia
Thursday, December 27, 2001 at 03:49:22 (EST)

I have been suffuring with clusters for over two years.I was first diagnosed with a sinus infection and underwent sinus surgery- to no avail!About eight months ago, I was diagnosed as a cronic cluster headache sufferer. About two weeks ago,I decided to give lithium a try,and WOW!! Since then I've had only five attacks-all of them mild! I can only pray that this will continue.I would greatly appreciate any feedback anyone may have.
Bob Bowling <>
Peachtree City, GA USA
Wednesday, December 26, 2001 at 21:02:12 (EST)

I'm a has-been, and offer my heart-felt sympathies to those that are just beginning to suffer from Cluster Headaches. My first headache appeared when I was 24 years old. My last occurred two years ago. I am 55. I'm going to tell you how to stop a cluster headache dead in its' tracks. Period. No headache. The solution. Free. But, you will be a skeptic. Hopefully, at least one will believe and will acknowledge that my post is the truth. Sure, I still get the "aura" that preceeds a bruiser headache. They pop up two or three times a year and go on for a few months. But I don't get those suicide-inducing crush headaches. No more hot towels on the left side of my head, no more leaning into a toilet bowl forcing myself to be sick because I might sleep just a few moments later, no more stopping on the side of the road because I couldn't drive with my nose stuffed and my eye watering and the intense pain. Gone. I tried Sansert in the '70s. I was on 32 mg a day when the recommended dosage was 4. I had Darvon, Darvocet, Codein, Ibuprofen, Halcion, Chloral Hydrate, Percodan, and the rest. Nothing helped. Nothing stops a headache once it starts. The E.R. cocktails, an I.V. Demerol with a Vistaril push, would sometimes stop a bruiser, but they left me broke and in a stupor. Which wasn't bad. Next day, same cycle. My headaches started with a bang, with nine months on and three months off. No alcohol, no chocolate, no cheese. As the years went by, the cycle began to change; less on, more off. But the intensity of the pain never changed. About ten years ago, Doctor Dean Edell, radio and talk show host, answered a callers plea for help. The answer. And, you can check the records to be sure I'm not lying, is, for the common folk, Lidocaine or Cocaine. Medically prescribed (takes two physicians in California), applied with a Q-tip to the inside lining of the affected nostril at the onset of the "aura"). Stops the headache before it starts. Dead in its' tracks. Don't believe me? Find someone that knows Junior Seau of the San Diego Chargers football team. He suffers cluster headaches. Know what he does? Goes to the sidelines and has his nose swabbed with "Lidocaine". Back in the game twenty minutes later. Hey, the TV announcers have said that's what's going on! They have said over National airwaves that Junior is receiving nasal Lidocaine! What they haven't said is that he has Cluster Headaches and the Team Doctors want to keep him in the game! With God as my witness, it is the relief every cluster headache sufferer seeks. You won't find two doctors that will prescribe it (Dr. Dean said it, and it's true. I'm very close to the medical field and no two doctors I know personally would sign the Class 4 drug prescription form), because of the obvious implications. I'm not anonymous on the Web, and none of you are, either. I'm telling you this because it worked for me, and I'll stand up and face any repercutions because of the post. I had cluster headaches for thirty years and the medical profession turned their back on me. Sure, lots of new drugs on the market, but none worked. Doctor Dean Edell said it and I believe it, "the answer is there but the medical community will not tell you about it". If any of the sufferers of cluster headaches wants to flame me because I tell them the answer to their problem, flame on. But before you do, ask your physician if what I say isn't true. Ask Junior Seau of the San Diego Chargers. Beg your physician for a prescription of liquid lidocaine or cocaine to apply to your nostril at the absolute, very first, aura of a headache. I guarantee you will find relief, and I know you will realize that I speak the truth. It stops the headache dead in it's tracks. If you don't catch it quick enough, nothing on God's Green Earth is going to stop it. But, I personally believe that stopping them early, and often, is the key to living a normal life. BTW, neither of these drugs is going to give you a "high" when you are going into a cluster headache, and if you seek the perfect high instead of headache relief you are on the wrong web page. It isn't used for that reason. And if you thought I was suggesting that, you belong in the cadre of stupid physicians that believe letting you live with cluster headaches is better than believing you will be "hooked". If any of you that will contemplate suicide when you are in cycle, as I did, you will ask your physician about this. In depth. If only one person benefits from this post, I will consider it a huge success. When I was 25 years old, starting my career and family, and having cluster headaches, I would have crawled the face of the Earth to find the cure. It took twenty more years before I found the answer. And I just passed it on to you for free. Right here, right in front of your eyes. And hey, I'm mostly over Cluster Headaches and am still a reasonably successful, non-addicted person (and no longer considering suicide). Any garbage your physician gives you about the implications of self-administered medication is just that - garbage. Good luck to all of you. And may your God grant you relief.
David E. Cisek <>
San Diego, CA USA
Wednesday, December 26, 2001 at 21:01:29 (EST)

great to know there are others like me! keep up the good work and loads of thanks. alan
Alan Margolis <>
London, UK
Tuesday, December 25, 2001 at 14:28:26 (EST)

I am probably out of my mind, but, I have noticed some things in my granddaughter, and one of them is headaches, along with what seems to be dyslexia. Do any of you suffer from dyslexia?
Jim Ryan <>
Jacksonville , fl USA
Sunday, December 23, 2001 at 23:27:07 (EST)

Hey everybody, recently after a particulary bad attack I decided to look up anything on CH on the net. I was very happy to find this site. I've been suffering from CH since I can remember (probably 6 or 7). I am an episodic sufferer and haven't tried any kind of strong medication. The headaches themselves usually last for 1-2 hours and come around twice/year (fall & spring) and last for 1-2 months of 3 attacks/day at the middle of the cycle. Pain levels are 7-8 on the kip scale. However after that 'bad' attack I mentioned above (a definite 10 on the kip scale) I decided to investigate since sitting on the couch with a couple of ice cubes in a towel against my temple was not working (never really worked anyway, just made it bearable). When reading about how working out stopped the demon in it's track it jogged my memory since when I was a teen I worked out religiously and sometimes I could short circuit the CH and continue with my workout. This week (last sunday) I decided to try the workout method. Get your respiration and heartrate up for 15-20 mins steady. Now it's okay to do a few situps, pushups and jumping jacks if you feel one coming on at 9 or 10 at night. But when you wake up at 1:00 am. 3:00 am. & 7:00 am it takes a extreme amount of willpower to do these 'workouts' each time. On the plus side I do three sets consisting of 20 pushups, 20 situps, 20 leg shoots, 20 leg raises, and then do 200 jumping jacks and the beast has been defeated time and time again. I'm also getting back into better shape. I encourage all the sufferers who haven't tried it yet to do so. However try doing a 'workout' when you don't have an attack and figure out what gets your heartrate and respiration up, then you don't have to think too much when that 3:00 am attack hits. Good Luck, Rob
Robert Farr <>
Calgary, AB Canada
Saturday, December 22, 2001 at 19:51:54 (EST)

Hi, I just found this site about 2 weeks ago and have been reading the posts. I knew there were others like me, I didn't realize there was a site. Anyway after reading this site I thought I would add to it. My clusters started in the spring of 1986. That summer I was in for a physical and I just asked the doctor about my headaches. He diagnosed Clusters, not much known about them, no cure, no known cause etc. The rest is history. I have experienced about every symtom that I have read on this site, have taken drug cocktails of just about every medication that is listed on this site. I have accepted that I must live with clusters and manage them as best I can. About the only thing that keeps me going is that I know that 80% of the clusters will end in 30 to 45 minutes even when I get 6-8 per day that realization keeps me going. The other 20%...well those are the 3 hour ones or what I have personalized as "back to backs". I'v been told that in most cases the cluster go away when we get in our 50s. I'm 54 and still waiting.....Doug
Doug <>
Lake Charles, LA USA
Saturday, December 22, 2001 at 15:37:09 (EST)

Hi i am glad to know that is a lot of people that suffer this orrible pain. thanks
maria bigio-ruiz <>
hartford, ctHi USA
Saturday, December 22, 2001 at 14:46:32 (EST)

Has anyone tried the Relaxica product? Does it actually work?
danny thomas <>
cumming , ga USA
Saturday, December 22, 2001 at 11:46:18 (EST)

It has been a few years since I have visited your wonderful website. I really like the improvements! My husband has been suffering with chronic Cluster Headaches since 1981. He has been pain-free only once during the last 20 years, and that was when he took Darvon for a Migraine. He has been taking amitriptyline for over 8 years and says that it allows him to reduce the amount of asprin he has to take. Having said that, he told me yesterday that his headaches are getting worse and it is getting hard to ignore the pain. (He describes his pain as being at level 3 or 4 (on the KIP scale) most of the time, with it escalating to level 7 a few times a year and and has had level 10 pain eight times in the last 20 years. I'm back to this site to see what new is out there that might help my beloved. God Bless you all!
Sue Beers <>
Brighton, CO USA
Friday, December 21, 2001 at 15:02:49 (EST)

Friday, December 21, 2001 at 14:56:43 (EST)

I have suffered with cluster/migraine headaches since 1978. nothing seems to make them any better or worse. dentists say my TMJ could be part of the problem. Another problem I have is that I am allergic to Stadol, Toryadol, and Imitrex. Break out in hives, headache worsens, more vomiting, etc . i wouldn't wish these headaches on my worst enemy, (even my ex-husband). HA-HA. thanks for listening.
Friday, December 21, 2001 at 12:58:03 (EST)

i fill very sorry for any body that has ever had a c.h. i have had to deal with them for 25 years and i am only 43.the last 3 years have been pretty goodto me, ihave only had about 10 c.h. in 3 years (knock on wood). a nerve block shot to my head is the fastest and most effective way of relief for 5 to 15 days of pain free. good luck. god bless you all.
ken garrison <>
hayward, ca. USA
Friday, December 21, 2001 at 02:29:22 (EST)

i am a 36 year ols single mom of three great kids. 18, 16, and 7. both my daughters are used to stepping quietly and bringing me cold cloths, now my oldest can drive me to and from the hospital after a shot. i feel like a criminal when i have to go to the hospital for a shot. they make me feel embarassed, and devious! for that reason i wait too long sometimes to go and end up in major pain for a long time. im glad to see im not alone in these feelings.
susan edwards
lakefield, on canada
Thursday, December 20, 2001 at 23:31:31 (EST)

I've suffered from headaches with auras all my life; early years included nausea, later were piercing with post nasal drip (presumed sinusitis) and most recently the cluster variety (up to 3 per day over a week or two). Nothing so severe as those I've read about here. What I'd llike to share, is that roughly corresponding with my going on prilosec (for gastro esophogeal reflux disease) over a year ago, all cluster headaches have vanished! Maybe just a coincidence, but... Haven't discussed this possibly positive side effect with my M.D. yet.
Len Fick <>
Nevada City, ca USA
Thursday, December 20, 2001 at 20:09:46 (EST)

Hello. I am a 44 year old mom and have suffered from CH for about 35 years.I have been in remission for almost 3 years, but was woken up last night with a CH. Usually I go every 1 or 2 years. I thought I was off the hook until last night. This will be the 3rd Christmas ruined since my daughter was born 6 years ago. I am really scared about how I am going to make it through the next 6-7 weeks.
Liz <>
Nantucket, MA USA
Thursday, December 20, 2001 at 06:25:38 (EST)

My name is Jeannette Jager, I'm 36 years old, married and mother of a 6 months old daughter. I've suffered from C(luster-(H)orton) since I was 13. My physician told me -when I was about 24, that it could not be CH, because only men could get it and it would only occur at night, when you're in bed. I know better now! Through reading througout the years, I'm smart enough to know it is CH. That's why a site like this is so important!My headaches dissapeared when I was 26. By then, I experienced 2 to 3 attacks a day, for 13 years! Suddenly it started again, 3 to 4 months after the birth of my daughter. During my pregnancy, I suffered pregnancy-intoxication (HELLP-syndrome), after which my daughter was delivered through a C-section after 7 months of pregnancy. My daughter is just fine now! I sometimes think that this pregnancy-intoxication might have triggered something. Maybe somebody out there knows? However, I will not let CH rule my life, therefore I'm (reluctantly) trying to accept and since I've had it for such a long time, it seems it's something I have to get used to like a pain in the...! My KIP-level during an attack goes from 0 to 5, sometimes 6, so I can imagine people having less pain, but also having more pain then I'm experiencing. I try to stay off medication, because my husband and I would love to have another baby, to expand our family. I only sometimes take paracetamol 500mg, sometimes 1000mg, which is 2 tablets, but maybe the medication starts to work by the time I'm on my journey back from level 5 to 0. I'm not sure. I'm also thinking about a link between serotonin-deficiency and CH. This starts out as a depression. Thanks to medication (serotonin-re-uptaker)I don't suffer from depression anymore, but I still have to take medication (commonly known as Seroxat.This medication started a riot in the USA because of addictive side-effects, but that's beside the point.) I'm curious about experiences in relation to my story. In short, my symptoms: left headache, watery left eye, stuffed left nostril, red left cheek, wanting to be left alone (which is hardly possible in daily life), and sometimes flashes in front of my eyes. I suffer from ear-infections every year. Well, this is my story. I want to compliment the makers of this site, it's very good! All CH-ers and other site-visitors: Best wishes for X-mas and 2002 from Jeannette.
Jeannette Jager <>
Deventer, Holland
Wednesday, December 19, 2001 at 15:48:10 (EST)

ive had CH for 13 years. taken various medications. using Imitrex pills now. only problem is the prescription only give out 9 pills, and that usually last only 2-3 days. Insurance covers only 27 pills in a 30 day span, so the only recourse is to pay to $150.00 for the Imitrex, or hope your doctor prescribes another medication that your insurance will cover. do appreciate some of the other suggestions ive read like water, water, water(3x), Migralspray, etc... would like to get as many alternative treatments as possible for future bouts with the BEAST. In my third week of this years go around, and hoping they go away soon.
robert mercado <>
arlington, va USA
Wednesday, December 19, 2001 at 14:39:46 (EST)

Hi there I am a clusterhead now for more than 20 yrs and nothing ever really helped- But I am going to try the Water therapy- I'm always optimistic. Jaap
Jaap Smith <>
Otjiwarongo, Namibia
Wednesday, December 19, 2001 at 12:21:00 (EST)

It is so good to find others who suffer from this! I thought I was nuts.
Kirk E. Jones <>
South Beach, OR USA
Tuesday, December 18, 2001 at 23:23:25 (EST)

I am so glad to have found this site, as I've never been able to find out so much about cluster headaches. And no one ever understands what I suffer, because they're not very common. I plan to stay in touch with your site. Thank you!
Hether Kuhn <>
Bogalusa, LA USA
Tuesday, December 18, 2001 at 11:42:13 (EST)

Not sure if I have cluster headaches yet. Just know something besides the normal not normal is going on inside my head. Have sudden circular saw pain starting at the right side, then goes to the back, and all the way to the other side, lasts for 3-15 minuts then stops like nothing ever happened, then an hour later, an ice pick jabs behind my right eye for about 2 minutes. An hour later that same ice pick jabs my eye again for 1 minute. this goes on for 3-6 hours then all of a sudden, I have a full blown 14 scale migraine that last for 2-3 hours even with med's going in by i.v. The whole time this is happening I have been in the hospital for a week for a migraine that has lasted 5 days on a scale of 8. I am physcially, emotionally, and mentally drained,. One thing I did notice was that each time I had a episode of pain when they were taking my vitals they were always higher than at the other times they took them. It has been suggested to me these are cluster headaches but I will have to discuss this with my neurologists first, and do some more research. Since I do still have what is called baby viens in my brain, have survived a major stroke, and 2 TIA, a car wreck in which no one should of lived, and only needed 14 stiches over an eye cuts and bruises on one leg. unfortunatly I have no luck in looks and in men oh well i'll just cuddle up with my stuffed teddy bear, my cat, a cup of tea, and a good murder mystery, hows that sound? on a more personal note I am the mother of two teenage boys no longer married my ex preferred gambling over his family (good riddance)have returned to college to get a degree in the social service field toward family development leaning toward toward teen parents.
janenne clark <law mom>
ironton, oh USA
Monday, December 17, 2001 at 22:30:46 (EST)

The pain gets so bad at times, i'm thinking of trying this new stuff out!
Lori Jacobs <>
Pine Bluff, AR USA
Monday, December 17, 2001 at 12:40:22 (EST)

I've read that elevated blood pressure is common during a cluster headache attack. But I have been noticing much higher than usual bp readings during this current bout, even in-betweeen headaches when I am not having an attack. Is this "normal" or do I just need to adjust my bp medication? Anybody know?
Bill Fenstermaker <>
Myerstown, PA USA
Monday, December 17, 2001 at 07:40:15 (EST) left no way for anyone to contact you...Would like to share some insights with you...Please take the time to read all you find here, especially under the OUCH tab...Wishing you pfdan...
judyw <>
Minot, ND USA
Monday, December 17, 2001 at 01:20:34 (EST)

Hello my name is Belinda. I am 30 and a mother of 2 boys. I am currently having clusters everday. It has been days since i have been able to help with the kids. Tomorrow they have a christmas party at school. And I will have to take pain medicine so i can go. I had to go to the emergency room this weekend and get a shot becouse the med i was taking wasn't helping. I'm so tired but i dont want to sleep. It hurts to lay my head down. My doctor is great she really tries to help me. But at 1 and 3 in the morning I'm all alone.
Belinda Ward <>
Fouke, AR USA
Sunday, December 16, 2001 at 23:58:24 (EST)

Hi never thought I see something quite like this, so sad & sorry to see everyone suffer like I hv. I hav'nt seen any like mine yet? could'nt read all. I suffered almost all my life, had A fall @ 5 yrs old, and car accident @ 21yrs of age. I am now 44 and after all these yrs I hope I hv A break thru. I unfortunatly get hit w/ 3 different types of headaches? (one triggers the other) just been dinosed w/cluster, tension headaches, Bone spurs, in neck & buldging dics, my right side of body goes numb, I (hv good muscle strenght) pain starts in my neck then goes up into my head behind right eye, If I get (Leftys) I call them, their even worse. Drs would tell me their migrans. I would say, their not migrans! Finally I went to nurosurgen, after bad exspierence w/ nurologist he sent me to pain center & gave me a shot Of steriod? cortizone? however after 4 days I hv been pain free, I lived w/ headaches everyday, when their about a 5 (range from one to 10) ten being worst I am pain free b/c u get use to pain I refuse to take anything for them & just use ibprophen to take the edge off, If I was lucky once in a while it would help, they hv me in tears But b/c of my faith (Christian) I get buy everyday I believe in medicines very much so, but being 44yrs old & trying to hv children stopped me from certain drugs so not to interfere w/conception. Pain is so unbarable but I get by. But having this shot even 4 days pain free is a miricle so I'm hoping for the best. Any info on this would be great, and comments from other suffers, Sorry u share pain, hope no one goes thru what I do, And I will continue to pray for help, answers ect. P.S migrane meds never helped me but may for others, Please don't suffer like I hv get help, keep knocking, Keep seeking, and u will FIND the help u need. Thanks Denise
Sunday, December 16, 2001 at 23:19:31 (EST)

Hi cluster sufferers, it is really nice to see that your really not the only person in the world that thinks they may loose there mind if they get one more cluster. I had my first cluster when I was 11 years of age, and at the time I thought I was dying it hurt so bad. I didnt have another until I was 15. I am now 31 and usually have an attack the first change into winter. I have the rarest form of clusters which is every 3 hours a day, and the cycle has lasted up to 7 months before. That happened once, they usually last about4-5 months every 3 hours everyday. They come at the same time daily so I really dread those times of day. I usually go to the hospital for about 1-2 weeks because its just to much pain to handle. I have a great nuro dr.who is the most understanding, he says he loves a challange so I guess he is in the right line of work. All who suffer knows this. I give myself DHE injections and it helps if I catch it soon enough wich is hardly effer. I had a trigger last October 2000 and it lasted for 3-4 months its hard to remember things while having clusters, anyway I had taking so much DHE that now I am having lots of pain in my leg. The doc thinks it is from the DHE but am having lots of trouble pinpointing it. It is like my legs dont get enough blood and hurt and swell all the time. I was aslo taking ergimar that you place under the tonge and it disolves. Got out of the cluster to now try and get over this. If anyone has had this problem I am so needing some info,PLEASE I am so sorry for all that suffer this terrible illness. I just live one day at a time and hope today isn't the day my life will end for 4 months. If anyone has had the problem I explained, Please email me. Thanx and hang in there ALL ONLY
Kimberly Feik <>
Platte Center , Ne USA
Saturday, December 15, 2001 at 02:14:13 (EST)

I have been suffering from CH for 9 years. I have seen 3 different neurologists and tried every medication, including Oxygen treatment, there is - nothing that works for me! I am just coming out of a cluster (hopefully!!!!!) but need to stay on the Lithicarb for the next 3 months to be sure. It's a no win situation. You take pain killers for the pain, and they make you so sick that you have to take medication for the vomitting. Hopefully, some new treatment will become available soon. Good luck all you CH sufferers. I hope you find a solution that works for you.
Tony Lansdowne <>
Friday, December 14, 2001 at 21:44:09 (EST)

I am a long time sufferer of the CH. I can go for 2 or 3 years without an episode, and then BAM, I will have episode daily for several weeks. They are completly debilitating while I am having one.Sometimes it gets so bad, I think death would be better. I would never kill myself, but I think you know what I mean. I have tried every remedy out there, to no avail. When my clusters finally go away, most doctors I have seen will not prescribe the "preventative" anymore, so I go without, and when the "demon" does show its ugly head once more, it takes until the end of the cluster episode (4 to 6 weeks) for me to finally have enough of the Depakote plus Pamelor in my system for it to make a difference. Your web page has had the most information that I have found on any type of search engine. I would really like to find a message board to chat or post to others, and sometimes to just vent, as that is what helps me through an attack. I have come to carry a mini recorder with me everywhere I go, to record my thoughts and my symptoms as the attack progresses. I then go back and listen, maybe a week later, and think to myself, that is NOT me, I would never say those things, and knowing all along it was me, and wondering why I did not pick up a gun and just shoot myself to end the misery. I know exactly why, it is against my faith and I have a dear husband and two wonderful children who need me. Ok , I guess I have rambled on long enough. Just know that I DO know what you are going through, and I wish you peace and a pain free existence, no matter how long it will take.
Teresia Paape <>
Fortville, IN USA
Friday, December 14, 2001 at 14:54:02 (EST)

Hi guys! A fellow clusterhead directed me to this site and things are looking up. I take a very small amount of joy knowing that my clusters aren't as horrific as others, it also helps to know i'm sane. One year ago I first realized these weren't n'normal' headaches, nor migraines. My attack lasted 42 days. While I wasn't in severe pain the entire time any relief time was filled with pre-cluster symptoms. Lately it has been happening agian..not so much the extreme pain but the prelude to it. The suspense is killling me almost as much as the headaches! I'm glad to know someone here might have some insight. SS
Steve Suski <>
Calgary, AB Canada
Friday, December 14, 2001 at 12:12:07 (EST)

I have head aches everyday. Now today I am having a trobbing headache on the left side of my head and it hurts to touch I donot understand and would like to see a doctor or find out what I might be suffering from.
Thursday, December 13, 2001 at 20:26:13 (EST)

I happened upon your site by accident. I think it is wonderful. I suffered from clusters for over 20 years. When my symtoms began, none of the doctors I found ever mentioned cluster headaches. I finnally found a GP who knew what they were. People thought I was malingering, there was no way to make them understand the incredible intensity of the pain! My bosses would tell me to take an aspirin when I told them I couldn't work because of a headache! I know what you are going through and will pray for all of you. At the age of 47, I found a doctor who prescribed the imitrex shots. They gave me relief, broke my cycle, and I have not had an episode since (I am now 55). I have no idea whether the shots did it, or whether I outgrew them, but I think you know how thankful I am that it happened. My son suffered from them through one episode in his teens, I thank God he has been spared more. All of you, please hold on, never lose hope!!!!
rick gunnels <>
paris, tx USA
Thursday, December 13, 2001 at 11:53:01 (EST)

Hello, Let me begin by sayinhg how happy I am to have found this web sisite, I have been suffering with CH for the past 3 years and it had never been formaly diagnosed untill this week Dec10,2001. My latest battle has been going on for 3 months straight everyday 3-6 headaches a day. My pain had finaly driven me to depresion and the ER.I am going to start oxygen treatment and after reading your web site Iam very optimistic. I dont usualy give my info over the net or get invovled in this type of responses but you have lifted my spirits so that I felt i needed to be part of it. My wife and son are also very grateful that I now have a place where people can understand my Suffering.So to all you CH sufferers out there you will always be in my prayers and thoughts hopping that your current cycle will soon end.So once again thanx for letting this 32yr old man know he is not alone when he hurts and CRIES.
Ulises Castaneda <>
Los olivos , Ca USA
Wednesday, December 12, 2001 at 20:09:45 (EST)

Thanks for being here!
Jayne <>
Sacramento, CA USA
Wednesday, December 12, 2001 at 15:57:58 (EST)

Hi, I an German / US Cityzen, I Live in germany. I have CH since more than 27 years. Your site is great and helpfull. Go on !
Andy Willig <>
Mannheim, Germany
Wednesday, December 12, 2001 at 14:49:14 (EST)

i am so glad i found this site!!! for years ive been suffering from these ch's thinking that there was something really wrong with me and that i was the only one to have these ch's. as much as i hate to say it, i'm glad i'm not alone...i will be visiting this site quite often. im in the middle of a cycle right now. last night was the worst its been yet. usually that means it might be coming to a end. atleast i hope..i had my wife up all nite with me last night. i feel so bad for her having to deal with this with me, but it makes me love her that much more for sticking with me. i hope to be talking to yall soon. thanks for being here, it is a great relief......
danny weikel <>
crescent, ok USA
Tuesday, December 11, 2001 at 17:33:00 (EST)

I've suffered from CH for over 20 years. I've been treated for everything from meningitis to a surgical correction of a nose injury from high school football. Recently, by the grace of God and an excellent neurologist, I began a medical treatment using Neurotonin. It has been a huge relief and blessing in my life. I am somewhat excited to see others who have suffered such similar problems. Many times I have thought I was insane or over-sensitive to pain.
Dave Vinyard <>
Kerrville, TX USA
Tuesday, December 11, 2001 at 12:06:53 (EST)

Gidday Again, I found this site less than a month ago,im a CH sufferer of 4 years,And im happy to say that my yearly cluster hase hopefully gone again for another year,About the 4th of december thay started easing{still getting all attack symtoms that i get but wouldnt get severe if you know what i meen.}Im still taking Sandomigran i dont even know if this stuff works or not but doctors say to keep taking them so i do.Reflecting back on that horrid month or so,geting a CH 1-2 times a day its like a dream?i feel for people who get more per day/night good luck and i hope they go soon.Its the 10th today and i can still feel that CH feeling on the side of my head/temple,but i havent had a full on one for 3 days,they lasted around one month. Good luck to all CH
Adam Wright <>
sydney, n.s.w Austalia
Monday, December 10, 2001 at 03:13:34 (EST)

Tomorrow I go to the hospital for a MRI of my head. The past five weeks, I have awoken almost every night with the terrible pain in my head. My lack of sleep has made me irritable, inconsistent at work. So far, thank heavans for the understanding family, and I hope the understanding boss. I finally went to the doctor on Friday, and after a routine exam, mentioned cluster headaches. I haven't ever heard of them before. What a comfort to me to find your website. Rather than fearing doom and gloom something terrible serious, I now feel that there will be hope to become normal and myself again. BTW, I'm 43, male and in excellent health. Thanks to all of you, I wish all of you well, and myself!
Randy <>
Anna, OH USA
Sunday, December 09, 2001 at 19:47:34 (EST)

I am a male Prison Officer 44 years old, I started having the odd migraines during my thirties, as my mum did. About 5 weeks ago I constantly had this severe headache down the right side of my head centred on my temple. It woke me every night for five nights after about an hours sleep. I went to the doctors as this has never happened before he has tried me on several types of medication and mentioned that they sound like cluster headaches. I am very busy at work and my colleagues are convinced that they are stress related,(even though I insist they are not). I used to run 4 miles a day in the gym during lunchtimes, but since my attack I am unable to do this (causing more tension). It is now in its fith week and it's really starting to wear me down and has me wondering if its more a sinister reason for my headaches. I read this site and realise that I am not alone, so perhaps I'm not going mad.
Ray <>
Herne Bay, england
Sunday, December 09, 2001 at 14:32:47 (EST)

Hello Friends. I am a Portuguese male 46 years, and have clusters , for about 8 years. At first the doctors told me I Hade trigenius, but 4 years ago a Portuguese Fellow of the Faculty of Anesthetists of South Africa , discovered the reason of my pains where Clusters. My pains are always at night, and the duration of each crise is about 20 or 30 minutes, six or seven times a night. My medication is prednisona during a week and generaly works. Know I am having pains , took the medication ,and when I finished the treatment , pains come back again. I think its better to think that those pains are part of my life, after all we are not alone . Love you all. Rui Vaz Pinto
Rui <>
PORTO, Portugal
Sunday, December 09, 2001 at 13:28:50 (EST)

Thanks for the great site. I just found out yesterday that i have CH. Have been expierencing them since i was 10 yrs. old. Now I am about to turn 38 and i still want to die when I have an attach. I haven't noticed a paticular schedule for them as they mostly come at night while asleep. bless you and all who are sufferers and their families.
Sunday, December 09, 2001 at 00:06:47 (EST)

I am 66 years old and have been dealing with cluster headaches for about 20 years. I find that I have my most success in aborting the headaches by using oxygen. My father suffered with clusters for a long time, but finally outgrew them at age 75. Maybe I have something to look forward to. My headaches were in remission for about 2 years beforereturning about a month ago. My wife found this web site and the info on it is very helpful and interesting. Thank you for providing this help.
Roger Hedeman <>
Hulmeville, Pa USA
Saturday, December 08, 2001 at 16:12:09 (EST)

just say HELLO to all the Clusterhead's arounf the world. My name is Michael, I'm from germany and I know all the "pain" since 6 weeks - thanks fro your sites !!! one question to Margi (water 3x): what kind of water ? - mineral, sparkle, non sparkle, special or just out of the bathroom or kitchen ? ;-) see you and all the best Michael
Michael Creydt <>
Schladen, Germany
Saturday, December 08, 2001 at 10:52:47 (EST)

hello i do not know what type of headache i have ,but the symptoms are as follows:swollen nose which becomes enlarged/swelling around eyes ,eyelids are puffy,my face feels full of liquid,i also bite down on my tongue involuntarily,the pain is on the left side of my face only,my eyes water only when i lay down,the pain worsens when i lay on my back,i cant work due to the pain,i get feverish at times and slightly nauseated,the pain last all day long and worsens after 6pm in the ears pop,and my eyes feel like they are being pressed on,basically the pain feels like a pressing feeling.please i need a doctors opinion.i have had a mri which was negative,and i have had a ct scan of my sinus area which was negative.i need help.thank you.
michelle <>
los angeles, ca USA
Saturday, December 08, 2001 at 00:49:57 (EST)

Hi, I am a 61 year old male who has suffered from these things since 1956. I have been PF for about 3 years, which is the second longest period I've had. Yesterday I got all the warning signs, ie.. left side of head getting tender, left side of neck stiff, left nostril pluged(even thought sinus has been removed). Anyhow, I started with the steriod blast (60mg pred). This is the craziest thing, I have all the symptoms, but no real pain. I was afraid to lay down last night, so I am a little tired. I am going to try to go to sleep tonight, but I get so afraid I'll wake up screaming when the first one hits. I know thats negative thinking, but my history doesn't paint a different picture. Thanks for listening. Kurt
Kurt Johnson <>
York, PA USA
Friday, December 07, 2001 at 19:03:02 (EST)

Hi. I am a 38 y.o. female and I have had cluster headaches since I was in my teens. I have a chronic cycle of the cluster headaches (year round with 2-3 cycles per month lasting up to 4 days). The longest period of time I go pain free is 14 days. I have used beta blockers, antidepressants (which make me nuts since I am really never depressed chemically), and Maxalt MLT 10 mg. The only thing that effectivly aborts the pain is Maxalt MLT 10mg taken promptly at the start of pain and sitting in a dark cold room for at least 30 minutes. The pain often rebounds repeatedly for days. My cycles begin while I sleep and I must get up and medicate myself and sit in a chair in the dark until I can lie back down when the pain eases. I have taught myself this technique and it works for me. I don't miss as much work as I used to. Unfortunately my insurance limits the number of pills I can get a month to 12. This is based on the average useage per month to treat migraine headaches. I often have to get more at full price so I can go to work to pay for this insurance! I am not a stressed out person (I teach stress management) or a nut. I am not a hypochondriac (I hate being sick) and no one takes up the slack for me, so there are no secondary gains for me! I would like to see physicians become more informed about cluster headaches because I too have been treated like a drug seeker (like palpitations from Imitrex is fun). I have been told only female alcoholics have cluster headaches (I don't care for the taste). It has taken over 20 years for me to properly daignosed. The majority of clusters are felt on the right side but occasionaly I will get one on the left. I practice great oral and eye health, as I too thought for many years that may be the cause. I hope and pray there is a treatment developed soon for all those that suffer from this dreadful pain.
Pineville, LA USA
Friday, December 07, 2001 at 16:52:45 (EST)

i am 72 years old amd just started having headaches again after 5 years of peace.
jim <>
south bend , in USA
Friday, December 07, 2001 at 11:12:25 (EST)

I just found this site today and have looked at some of the messages - I feel close to tears - I dont know if it's because I've found people for the first time (in 5 years of suffereing) people who know what clusters are (everyone knows migranes, but nobody else understands what I go through) - I feel so sorry for all of you and some who seem to have it even worse than me which almost seems unimaginable - It's almost freaky to read accounts of attacks which seem like they've been written by me as the suffering is EXACTLY the same as mine (waking between 11pm and 3am - the pain behind the left eye - the rituals of suffering alone in the darkness downstairs deperately trying to find a new means of relief whilst cursing the 'demon' inside my head) - I'm so glad I've found this site and cant wait to find out more and hopefully get in touch with other sufferers. (34 yr old sufferer).
David (London, UK) <>
London, United kingdom
Friday, December 07, 2001 at 06:34:05 (EST)

You cannot imagine how it feels to read some of the comments and see that there are those that understand and that contrary to popular belief it is not just "a headache".
Walter Gunn <>
Ocoee, FL USA
Thursday, December 06, 2001 at 18:42:21 (EST)

Hi! I was refferred here by some that I love who suffers from these headaches...He suggested that you all may be able to help me or I you... There is a holistic sublingual mirgrane spay on the market called Migraspray I wondered if any one has tried it? The clinical trials came out yesterday and were very positive ...but only you know for sure if it is available at Walgreens and online at This is not a solicitaion to purchase some ( unless you want to it may help) but a plea for help if anyone out there has tried this product please let me know @ ASAP!
loie johnson <>
st pete, fl USA
Thursday, December 06, 2001 at 17:20:38 (EST)

Hi, I am 17 years old and I don't know if I have clusters but I have taken the quiz and it didn't help me. But anyway I am going to the dactors next week to find out what is causing my headaches. Anyway if have clusters I would like to know what your doing about them. Thank you for reading this and god bless. Jen H
Jen H <>
Belleville, On CANADA
Thursday, December 06, 2001 at 15:45:04 (EST)

I just found this website,and what a find!!I am a 52yr.old male and have been diagnosed with cluster headaches.I have two brothers with a history of cluster headaches.I am afraid that mine may be chronic.I am seeing two neurosurgeons.One wants to start me on lithium;the other wants to try accupuncture. Any suggestions?
bob bowling
peachtree city, ga USA
Thursday, December 06, 2001 at 14:33:16 (EST)

I am suffering for more than 30 years
Mariet Panhuijzen <>
Goes, Zld The Netherlands
Thursday, December 06, 2001 at 11:55:35 (EST)

Very Nice to see a site dedicated to Cluster Headaches. My name is Mark - I first experienced this excruciating pain two years ago (Almost to the day) - Last year, apart from a couple of small headaches, I escaped the agony. Now they are back. Unlike two years ago, this time I know exactly what they are. They lasted for 5 weeks then. I can only hope this time they last no longer. Various trips to Doctors 2 years ago produced no diagnosis. In the end, I took an article from an on-line site describing CH's to the Doctors and explained - "This is exactly what I am experiencing" & "This is what I have" - At last a diagnosis was confirmed. This year, Beta-Blockers have been prescribed & appear to be working / less frequent headaches & not so severe. I have also discovered that during an attack, tensing the whole body & "pushing the pressure" into your head sometimes knocks the throbbing vein above your eye out of spasm. By mastering this, I have been able to feel the Pain drain away as if it would after an attack on various occasions during a Ch. Maybe of some help. D'ont give up, they do go.
Mark Stewart Huntly Burslem <>
Bournemouth, UK
Thursday, December 06, 2001 at 10:05:37 (EST)

I have had clusters for the past 21 years,(I am one of the few females) but, I have been luckier than a lot of you out there. Mine takes breaks for a few years at a time and then all of a sudden it attacks. I have a history of migraines, sinus and cluster headaches. I wonder, do any of you get the other headaches too? I think actually I have been misdiagnosed with the other headaches, but I am not a Doctor. I have found with this last bout of clusters that during the period I am having it if I scratch my head all over on the side of the headache vigorusly for a few minutes, the headache seems to be relieved from behind the eye even though the pain is still in the head, the eye has some relief. I know it sounds funny, but it worked 5 out of 6 headaches. You must use your nails or take a brush that has thick bristles and just rub or scratch as hard as you can (don't make yourself bleed though). I just got in this site yesterday, I am trying to find help and know I am not alone in this. Good luck to the rest of you.
melody <>
chicago, IL USA
Thursday, December 06, 2001 at 09:27:18 (EST)

Hi my name is Christina. I'm 23 years old and have been a cluster sufferer for 11 years. I'm so Happy to join your family.
Christina <>
Victoria, BC Canada
Wednesday, December 05, 2001 at 16:28:28 (EST)

Hi, My significant other had his first bout with a cluster the 17th of November after a 17 year lull. It has been a horrendous 24 days for him. He currently is seeing his primary care who has him taking an oral painreleiver and sent him in for a cat scan today . I just want to understand more to better support him though this painful time . Thanks I have enjoyed the site information and suggested that he take this infomration in to his doctor and discuss med options. Laura
Laura Iskenderian <>
Oberlin, O USA
Tuesday, December 04, 2001 at 19:42:27 (EST)

I am 56 years old and have been suffering from cluster headaches since I was 11 years old. After being diagnoised in 1986 (while starting alcholic recovery, 15 years) and creating a past journal, I understand my pattern, triggers and predictable events. I get my attacks every 3 years, May, June and July. Strange but true. Since I have turned 50, my pattern has changed, as well as my triggers. I am currently suffering, but am on the done side. The biggest problem I am having now is that the best medicine so far has been the very expensive imitrex shots. Every cycle I run in to the same problem with the insurance companies that say for migraines, they will only pay for 4 shots a month! aaaaaaaaaaaaaaaaaaaaaahhhh! I get up to 5 attacks a day. Oh well!, hello and I am glad we are not alone. Mike Waldron
Mike Waldron <>
Tuesday, December 04, 2001 at 17:28:03 (EST)

here is info.
amanda grunwell <>
saginaw, mi USA
Tuesday, December 04, 2001 at 14:43:39 (EST)

Neurologist thinks I may have the best of both worlds- trigeminal Neuralgial and cluster headaches. One triggers the other? Is that possible? does anyone know about that?
Denny <>
Tuesday, December 04, 2001 at 12:44:06 (EST)

I really don't want a chatroom. I just want to know if there is someone out there that knows a cure for this or even a relief for this
gerry <>
san diego, ca USA
Tuesday, December 04, 2001 at 09:54:09 (EST)

I discovered this site a couple of years ago when I thought (wrongly!) that my cluster headaches had gone forever. I’m 33 now, and up until 1992 I had them every five years – like clockwork. When I ‘escaped’ (and imagine the relief!) in 1997 I thought they were gone forever……….. but after nine years they are back. I’m Suzy, living in the UK, and have not been officially diagnosed as having cluster headaches, but I know that’s what they are – my Doctor calls it ‘neuralgia’ and has prescribed anti-inflamatories (about as much use as boiled sweets!) I can’t believe I am back to the suffering after all these years. I had a baby in September and am wondering if that has had something to do with the re-occurrence of the pain after so long – have any other lady sufferers experienced this? I am just so sad that I have to be here, reading your comments and crying for you all as well as myself. I know that I don’t need to say anymore, because you understand. Suzy
Suzy <>
Tuesday, December 04, 2001 at 06:29:13 (EST)

Hi there all. Been awhile since I hae added any comments. I come here to read when the headaches hit. Helps to keep my head out of the gutter. I have had ch since i was 19. I am now 45. Have tried almost everything out there. Nothing seems to work except imitrex shots. Problem is that they are getting hard to get insurance to pay for them or even help with enough to get thru the month. Now they only alow 4 shots per month. Oh well, i guess 2 days out of 30 is better than none. Read a letter in here one time on extending your shots. You are allowed 12mg per day (2 shots) and when you are having 4-6 ch per day that doesn't get you very far. The writer suggested to strip the paper off the syringe and give your self shots in thirds. Probably not the best way to do things but when 4-6 shots are needed per day, well got to the point where i would try almost anything. Works good in my experiance, just seems to take about 5 minutes longer to get rid of it. About 1 1/2 months ago I had shoulder surgery. After the pain pills were gone my doctor gave me vioxx (anti-inflamitory) to help me sleep at night. The ch seemed to stop. When I ran out of vioxx for a few days they came back. I am now taking 1 25mg vioxx per day and have not had any. It has been 2 weeks. Not sure if the vioxx is what is doing it or just at the end of a cycle but we will see. It is the first preventive medicine that has even seemed to help. I will keep you informed. Thanks and have a great day. Enjoy life when the ch are not putting you down and hang in there when they are. My heart to all who suffer from these. This includes the victims (spouses, kids, friends, and family). CLUSTER HEADACHES were 80% of the cause of my divorce so hang in there all and help the people suffering from these thru them so that life can be enjoyed.
DeWayne Littlejohn <>
Henderson, NV USA
Monday, December 03, 2001 at 21:29:33 (EST)

Hi, it has been a while since I have been here. When this "BEAST" isn't hammering you I tend to leave it alone. I have not had an episode in a in over a year and I thank GOD for this all of the time. I do not believe I can live through a long episode of this; again! If my experience and treatment(s) could help anyone I will be glad to share. My prayer: Thank you GOD for taking these headaches away. Please continue to take them away and keep them away and put them somewhere, where they will never bother anyone again! Thank you, God, Jesus, Sprit. Thank you for letting me share this. Gary
Gary Sedahl <>
Lehigh Acres, Fl USA
Monday, December 03, 2001 at 04:56:14 (EST)

Hi, my name is Mary Beth. I'm a junior in college and i was diagnosed with cluster headaches last year. The last 7 or 8 months have been the worst of my life. I never know when my headaches are going to come back and they hurt so bad i want to die. I am supposed to be going to Paris next semester but i am afraid. I feel worried because it is not just headaches that i get anymore, the pain travel down my neck to my left arm and chest. I went to the cardiologist but they said nothing is wrong. I feel like no one believes my pain or understands it, i just wish i could stop it. Also, i get very bad spasms in my head all of a sudden. It is like an attack and i blackout for a millasecond and my body thrusts foreword. My doc said that i had cluster headaches but didnt know what the spasms were, does any else get pain like this? I'm scared and alone and im really happy that i found this page so i can talk to other people that are in my situation and learn from you all. Thankyou. sincerely, marybeth
Mary Beth Slavin <>
West Hartford, CT USA
Sunday, December 02, 2001 at 21:07:50 (EST)

I am now 44 and had my first ch attack 12 years ago. Like many here I was hugely relieved to have the condition diagnosed by my neurologist in my second bout a year after the first series, but that was after visiting GPs,dentist,and ENT. It seems others, especially in the UK, have had similar problems egtting diagnosed. My first attack was in Spring and then the following spring. Now it seems to be more autumn/winter. I consider myself very lucky when I read of the frequency of the attacks that many of you suffer and I really do not know how you cope. I am generally OK with pain and do not have injections for minor dental work, like fillings. However the pain with these chs is not only worse in intensity, but longer duration - in my case 1 -2 hours at a time. The whole episode lasts about 6 - 8 weeks. For the first few years I never had any treatment. Then last time I tried verapamil for a while, which didn't work. Then to my total delight and amazement I have not had an attack for about 3 years now. In fact I was thinking I was over it.However they started again last Thursday (30 Nov)night. During an episode an attack always starts within 5 minutes of having alcohol. In fact I always know I am getting into a session when I get my first attack after a drink - then I stop drinking for the 6 weeks or so. Normally I am a "social" drinker and have a few glasses of wine or beer a week. In a session, I know I always get attacks just after going to sleep and wake with the pain. It just builds and builds and within about 15 - 20 minutes gets to level 10. That is in the middle of a session. My 6/8 week sessions build in intensity so that now, for example, just about 4 days into it, I only reach level 7. I had read about the relationship with histamines with interest. I started suffering from hayfever,the symptoms of which are prevented by taking anti-histamines, about 6 or so years ago. I started taking anti-histamines every now and again throughout the year, even without having hayfever, as I thought this could help prevent ch but stopped this about a year ago. I know I am clutching at straws here but I have often wondered if there is a relationship between hayfever suffering and ch - any of you got ideas on this? This year I had no hayfever for the first time in many years and now have ch again; so bang goes that theory I suppose. I am determined this time to try one of the treatments you mention and it seems O2 could be best for me with most attacks happening at night.Tomorrow I will call my neurologist to get a prescription, if that is how one goes about getting oxygen.
Jonathan Schaffer <>
Woking, Surrey England
Sunday, December 02, 2001 at 16:40:46 (EST)

i have been suffering with these cluster headaches for about two years now
bryan puccinelli <>
reedwood city, ca USA
Sunday, December 02, 2001 at 15:36:23 (EST)

My clusters started in 1971. For the first 15 years they always started in Nov., and came around 2:00AM every night for 7 weeks. When the pain came I'd take the two fiorinal 3 capsules on my night stand, move to the family room, and proceede to bang my head on the wall, punch my forehead, and rock violently fore and aft until the hour needed for the drug to do it's magic had passed. I was young, and able to say that this was just a cross to bear. The 16th year brought a surprise; The headaches stopped after just 4 weeks. Nothing else had changed. I was so relieved hoping that this was a new pattern...four week clusters. Only us who have these can appreciate my rejoicing in only having to take 28 trips to hell. As usual, I put them behind me that year, and went on with life. Then came the payback. In June I started another 4 week cluster. This was most disconcert- ing. I could no longer rest assured that any night would not bring the start of another group of these insideous headaches. Over the remaining 14 years, I had clusters at various times of the year, and have even had NONE in two 12 month stretches. I have tried every drug listed. One year Lithium worked very well, which for me was that several headaches woke me, but didn't materialize... just a ghost. The next cluster I took both Lithium and Verapamil, with no noticible effect. Steroids always work to break the cluster, but don't shorten the total duration. The past 7 years I've had as many as 8 headaches in a 12 hour period. Several doctors have told me that they tend to become less severe with age. While I've found that this is true, a 50 year old doesn't recover from 20 nights of broken sleep near as well as a 30 year old either. I have one experience to report which may be rare. I have been in a cluster for the past 6 weeks, and was awoken at 5:33 with the usual pain starting on the left side of my throat, and up into my left eye. I have some Stadol, so I set up, sprayed my nose, and got into the rocking position I always do. The pain came on very fast, and very severe. I just knew what I was in for. I dug my elbows into my knees, grabbed my head, and begin to rock. As I press on my left eye, I usually 'see' a dark red-orange ball right in front on the eye. As I started to cry, the ball changed to a red rose, and the pain was gone... instantly. I looked at the clock and it was 5:44. I believe that my cluster period ended while I was having a headache. Anyone else out there ever experience this? I might be pre-mature believing that this cluster is over... I tend to be optimistic (perhaps wishful). As do all of you, I pray for the day that the cause of these will be found. Bob
Bob Hamilton <>
Soquel, CA USA
Sunday, December 02, 2001 at 15:25:36 (EST)

This site is really excellent, what a fantastic effort.
Jonathan Schaffer <>
Woking, Surrey England
Sunday, December 02, 2001 at 15:00:53 (EST)

I am writing for my fiance' who has been a cronic sufferer since before we met in 1995. He is 30 yrs. old, a smoker, drinker and like all of you has taken numerous meds. Prednisone seems to work and Imitrex shots. He's going through a rough one this month, about 8-10 a day. we are tired really tired... Loved this site and sat and read and cried...Love to talk to any of you! Thanks Kandra Klein (Bullman someday)
Jon Bullman <>
Newark, Oh. U.S.A.
Sunday, December 02, 2001 at 14:23:14 (EST)

I just found this site, and I've cried and cried reading your letters. I'm a wife of a chronic. He works 3rd shift so every day when he wakes up around dinner time he has these horrible headaches. This has been going on for the past 6 years (since we met) every day. I now feel so guilty. You see I never get sick and I get tired of his complaining, and every day, it seems like all he talks about is his pain. I've been very unkind several times and told him it's his own fault because he needs to go to a different doctor. You see, he's seen at least 15 doctors, from alergists to chyroprators to osteos to 2 different neurologists. He's had 2 surgeries (sinus roto-rutter and tonsil removal). He's had chortizone shots to shoulders and every x-ray and scan imaginable. He's a body builder with allergies, so all the doctors tried to attribute his pain to either allergies or muscle strain. It finally took a neurologist to diagnose the clusters. Even though the pain has always been the same. Starts behind his left eye, travels across his head, his ear kills him and somedays goes down his neck. He's been on at least 20 different kind of allegy meds, and a few of the head meds (imitrex...several others, I just don't know what they are) I get so irritated with him because he'll take one script out, and then never refill, because he says they didn't work and he didn't like how they make him feel dragged down. We begged a neurolgist to prescribe oxygen, and then found his insurance wouldn't cover, and we havn't had the money to pay for it ourselves. So he still hasn't been able to try that one. After reading all these strong strong strong men's accounts of their pain, I promise I will never "blow off" my husbands pain again. I honestly thought we'd find a doctor that could help him and they'd go away, but now I am more scared than ever, that this could, and probably will, get worse. You see, they've gotten worse every year, and I don't think he can stand much more. I've heard suicide runs high with cluster sufferers, and I can only pray that he'll never consider it. (he alway says, please shoot me). I'll show him this site, cause I'm sure this is going to end up on our favs list. I'll pray for all of you, and your families too.
Byrdlady <>
Largo, FL USA
Saturday, December 01, 2001 at 08:51:14 (EST)




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