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


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im 36 had ch since i was 15 have had brain surgery nothin worked oxygen works through the first month but after that the only thing to cover them up is stadol nose spray which is a level 2 narcotic but i have found thast the pain clinicxs can perscribe this med more often than an md
jeff riddick <>
st joseph, mo USA
Wednesday, February 28, 2001 at 23:43:41 (EST)

im 36 had ch since i was 15 have had brain surgery nothin worked oxygen works through the first month but after that the only thing to cover them up is stadol nose spray which is a level 2 narcotic but i have found thast the pain clinicxs can perscribe this med more often than an md
jeff riddick <>
st joseph, mo USA
Wednesday, February 28, 2001 at 23:43:40 (EST)

Hey gang. I am glad to see I am not alone. Just preparing for another bout with the devil. This will be my third time around. It appears there is a three year gap in between my clusters, and it has been three years since my last. However, last night I had that very distinct eye pain, and sure enough, he is back for another visit. I am scrambling to find my medicine, to help prepare for the missery that is just hours away. I am scarred, but apparently not alone. After all, missery does love company. Gotta go hide the firearms before the fun begins.
Dave Williams <>
Mesa, AZ USA
Wednesday, February 28, 2001 at 19:01:25 (EST)

I only found my eye ache problem and cure from a neuroseargon. He gave me Imigran and it works fine. I have had these Cluster Headaches since I was a kid and did not have a Clue what it was but it made a mess of me many times. PS Before Imagran came along I took Codice and Panadol in large quantities but my Eye Ache ( Which is what I called it )went on for about 4 hrs. The Hot Shower over the face releived the pain somewhat but did not stop it. I apear to be a mild sufferer but all the best to you all. This site has given me goog advise, it is a pity it was not around 40 years ago. Tom Marshall
Tom Marshall <>
Melbourne, Vic Australia
Wednesday, February 28, 2001 at 08:57:59 (EST)

I have suffered from cluster headaches for over thirty years and think I have found what caused them and how to get rid of them. I can bring them on if I do the wrong things and get rid of them when I do the right things. I will gladly share my experences with other sufferes, but I would like to have the recognition of my findings. I have been free of these wicked headaches for over ten years. I have a very interesting story to tell. email me if you wish
Bill Finnegan <wfinn49611>
Kissimmee, Fl. USA
Wednesday, February 28, 2001 at 07:15:59 (EST)

This is fantastic man today i was diagnosed with cluster headaches after 5 long and painfull years and then i find you guys it gives me tingles. every idiot doctor i went to made me feel like a drug seeker every one i met thought is was all in my imagination my wife has sat looking with pity as she had no idea how to help me when the attacks came,it affected my whole life its such a relief to finaly know thank jamie ill keep in touch
jamie forbes <>
adelaide, sa australia
Wednesday, February 28, 2001 at 05:03:22 (EST)

I want to thank you for such a wonderful site!! It is relieving to finally be diagnosed with something (CH) as these headaches have been scaring myself and my family. They started back in Oct, 1997, and the cycle lasted 4 weeks. Went through all the necessary medical exams, tests (you name it), and nothing was found....just noted as a "viral" headache. Was pain free until last March, when it started all over again (lasted 5 weeks). This time I was with a different doctor and, again, started the same tests over again...along with a million different medications... of which none worked. And, now, here I am again, this cycle has been going on for almost 4 weeks now. After consulting with colleagues, my doctor thought it might be CH, and we tried oxygen therapy twice. It brought some relief..although I've never been able to try it in the beginning of an attack, never can get to the doctor until I'm fully into it. I did notice, though, that while it did provide some relief...the next attacks seemed more severe (as anyone else experienced that?). I've tried Imitrex during my previous cycles...nothing. I've tried Midrin, Cafergot, and many, many others...nothing. I use indomethacin (Indocin), provides some relief, but if I'm on it for more than 2 days, I get extremely dizzy...almost to the point of passing out. Otherwise, I have to take Darvocet, which doesn't stop the HA, just "masks" the pain. My doctor wants me to try Celebrex, however, I may be allergic to it. The contraindications for this medication say for those allergic to sulfonamides...should not take it. I'm allergic to sulfa, breaking out in hives...and my eyes swell. Being as we (my doctor & I) are desperate to try any medication, she wants me to try it, and if I do break out in hives, etc.. to stop taking it. However, I'm really kind of scared to take it...I'm tired of suffering from all the side effects from the other meds I've tried that didn't work. Anyway, this site has really been a blessing for my family and I. It helps to know that I am not alone. I have found that my husband is my best m medicine, he is so great with helping me. He does everything he can and I thank God for him everyday! I also ask him to "squeeze" my head in the beginning of an attack..I know that seems strange (well, maybe not), but I sit on the floor by the couch, and have him place his hands over my temple area and squeeze...putting the pressure on the left side (that's where mine hit), he can really feel the throbbing on that side and it shocks him how strong it is (compared to my right side). He can always tell when I'm in an attack, besides the obvious things... the "dance", as my left eye becomes all glazy and swollen.. Sometimes right before an attack, my nose starts running and I am very cold. After reading through all the info on this site, I've learned so much about CH, and have been really focusing on mine..trying to learn what works best, how to tell when one's coming on....etc, that I can try to stop it, or at least try to stop the intensity. I just can't wait for this cycle to END!!!!! Thank you again for this wonderful place to go!!!
Susan <>
Tucson, AZ USA
Wednesday, February 28, 2001 at 02:50:48 (EST)

Hello One and all. Today started just like most days do and that was awakening in the middle of the night with a headache that could stop an elephant. I know alot of you can relate to what I'm talking about. Only had to take 2 Imitrex shots with 5 Excedrin Migrane pills and the last shot of Stadol that I had and guess what,right, nothing, still there! My question to anyone is, Is there someone to help us or a place that we can go to get some type of relief, other than the hospital for another injection of sleeping serum. Also, my wife feels for all you CH spouses. You guys are really GOD sent to each one of us that suffer.Thanks for the info I'll keep in touch. Everyone feel better.
Dean Wassmann <>
Paeonain Springs, va USA
Tuesday, February 27, 2001 at 16:19:26 (EST)

I enjoy reading the useful info here, last night I felt like I was loosing it. It has been 6 years since my last bout with this night demon, but it is back. Many feel that I have a sinus infection but after reading the info here I know what I have. The ergo-caff worked well last time, but this time they put me on imitrex. May the medical community find a cure for these headaches,God Bless you all. Frankie
Tuesday, February 27, 2001 at 16:06:14 (EST)

I have suffered from migrane headaches since 1990. I know migranes are not cluster headaches, but I am lost at where to turn. I have been prescribed many types of medication, however, because of the nausea that occurs with the headaches, narcotic are limited. The one medication that helped me before the headaches got too bad is Fiorocet (plain). However, I am going through a very nasty divorce and now my husband and a psychologist are saying that I am not capable of caring for my two children ages 8 and 11 because I have to take medication and it is mildly addicting. I took the medication as prescribed, but they are saying that even normal use of this medication impairs my ability to drive, cook, etc. Does anyone have experience or a story to tell about someone who lost custody of their children because they were on medication? HELP!
Linda <>
Tampa, FL USA
Tuesday, February 27, 2001 at 14:09:26 (EST)

I was so relieved to see this site on the net. I have never actually spoken with another sufferer and I've been wondering how many are actually out there and do any of us qualify for SSI. Yesterday I lost another job due to my HA's. I have a wife, three kids and a grand son, a mortgage and two car payments, what on earth can I do? Arent emergency rooms the greatest, how they make you sit and wait, sign in here, sign in there, No sir you can not have any oxygen until the doctor sees you. Have a seat and someone will call on you. So you pace the waiting room in tears, a half hour or so passes you rest your head on the cold plate glass window hoping it will ease the pain lol. finaly they call your name and you make a mad dash to the exam room.The doctor finaly comes in and after he tickles your feet and plays all these other stupid games you get another hundread questions quiz.All the while begging for oxygen and Imitrex, finaly the oxygen mask arrives but of coarse it's much to late, you needed that in the waiting room but by now your ha is up to about a 10 and youre about ready to strangle the doctor if the imitrex doesnt arrive soon.Then finaly the nurse comes in with your shot, now that the ha is almost over and she jams the needle right into the muscle but you don't care, its feels good to you doesnt it.after a couple minutes they cant believe how soon you recovered. They give you your discharge papers and you tell them thank you so very much and I'll see you tomarrow same place same time.My insurance co would only pay half for my imitrex and now that I lost another job I have no more insurance so this may be the last you hear from me 'cause any day now I'm gonna' kill myself as a means of pain relief. I only pray that my wife and kids will understand. sincerly, dead man Lenny
Dead Man Lenny <>
Gloversville, NY USA
Tuesday, February 27, 2001 at 13:58:45 (EST)

I was so happy to find this sight. I have so many questions still after 12 years of cluster headaches. Small town doctors miss diagnosed me so often...I really loved the "its a headache dear (duh) take a tylenol". I haven't gone back since the doctor told me a subository should do the job for CH and sent me on my way. I didn't know there were other options available in meds. Thanks all. Questions will follow LOL.
Stacey <>
Princeton, WI USA
Tuesday, February 27, 2001 at 11:27:41 (EST)

My husband has suffered from CH for 15 yrs. I knew they were bad but I just never knew how bad untill I saw one in full swing on 2/19/01 and all I can say is "Oh my God in heaven." The "beast" hit like no other I have ever seen before. I had seen them but not this degree. To be honest it scared the devil outta me. His right eye was swollen completely shut, tears steaming down his face, right side of his face was swollen half way down. He had hit his Imitrex nasal spary an Oxygen and Nothing was working. I was left totally and completely helpless, like a new born kitten. Ken (my husband) has tryed many different treatments an provention meds. and again nothng helps! The docs we have seen are by no means of any help either. They just don't seem to understand just how terrible these head aches really are. Ken and I both feel they just don't get it, nor do they really want to either. Ken just happen to stumble on this sight and for he and I both its a "True God send". Thanks to this sight we have found we are not alone in our strugle to find help. We now have an appointment with the Ford Head Ache clinic. (thanks Ike)This sight has been a way for both of us to learn more about CH and to see we have "a family" out there that are dealing with the very same things we are from Ken's side of the suffering to mine as his wife and having to watch him suffer. Thanks so very much!!!! Leesa Butler
Leesa Butler <>
Birmingham, Al USA
Monday, February 26, 2001 at 22:56:04 (EST)

I've had this dreadful pain for more than twenty three years. Threw the years I have used many types of medication. I also have learn that all medication is not for everybody. What"s good for me is not good for you. At the moment I'm using sansert,and Imitrex Nasal Spray. Whenever these medication does not help, I'm on my way the hospital emergency room to get medicated with demoral IV I
Charles T. Jones <poodiejones>
Baltimore, MD USA
Monday, February 26, 2001 at 20:29:09 (EST)

Thank God I no longer feel alone!! Thanks for web sight!!
Kenneth Butler <KB4414>
Birmingham, AL USA
Monday, February 26, 2001 at 17:00:36 (EST)

I have had CH for about 12 years. The first time I got one I was about 15 years old and I woke up at 1am in the morning and knew with 100% certainty that I was dying. There was no other explanation for the pain I was in. I had little sight, slurred speach and could not walk. I pulled myself up the hallway of my parents house on my elbows and pushed open the door of my step mother's room. I told her in my wobbly speach that I was dying. The doctor came to the house and gave me an injection, I don't know what but by the time he had got there the pain was going anyway anyhow. And so it began. My clusters are mostly every 2 years but have been more often on occasion. Between these Clusters I have what I think you call 'shadows' and also have migraines. It has been very lonely and desperate as you all know and I have frightened a lot of those close to me with my head banging and screaming when I just could not keep quiet any longer. The helpless, utterly exhaused weeping of someone who just couldn't fight anymore must be a had sight when you care for someone. The only explanation I could give them was that it felt like my head had rotted and was dead inside and that someone was stabbing and shocking me with a red hot electric poker in the side of the head. Since discovering only this year that what I have is CH, I have felt stronger, it is empowering to see my exact symptons down in words and corroborated by so many others. The only sad thing about this comfort is that others have to suffer also to give me company! My first priority in my life is my health and I spend a great deal of my money and time on improving my health in any way possible and trying all types of healing to prevent this condition form continuing in my life. I believe that I am now having some success as a cluster started before christmas and it stoped after only 4 episodes, amazing considering it is usually 3-4 months of 2 or more a day. I am also very lucky I understand, that imigran (or imtrex I think it is called in other countries) is effective for me. Only the injections work and I have overcome, to some degree, a phobia of needles to use this. I think this proved to my family how bad these headaches could be. They knew I normally had to be sedated or restrained for anyone to get near me with a needle and to see me inject myself, even with an autoinjecter, they knew I must be in a bad way. I rarely go anywhere without my imigran as the thought of being incapacitated and vulnerable from a headache away from my home frightens me silly. I must also say that although my doctor has not been able to help other than with the imigran he has always been incredibly supportive and acknowledged the suffering that I had. He once told me that he admired my courage and really that kept me going at one stage. I have gone on but am just so glad I am no longer alone. Take care thank you Sarah
Sarah <>
Wellington, New Zealand
Sunday, February 25, 2001 at 18:09:42 (EST)

My husband has been a CH sufferer for 15 years. He has taken the following medications: Prednisone for 6 years,which has done nothing but make him swell like a baloon, his skin litterly rot, and lately has has passed blood through his kidneys.Prednisone cannot be good for any one but the drug company's. He has tried Imitrex injections, Cafergot, Neurotin, Ultram, Calan, Vaprimil, Stadol, Depakote, Midrid, Lithium, Zomig, Naprosen, Inderal the list goes on and on.The CH seem to come in early spring lasting all summer with a short break only to return in the early winter. The pain starts behind his ear going to eye with extreme pain, he stands over the sink in the bath room with a LARGE stream of clear white mucus with bloody streaks pouring out of one side of his nose. He is a tuff ole bird, but the pain is so bad he is screaming and begging for some time of relief. He is a cold natured person, but I have seen him walking out on the patio all hours of the night with ice cicles hanging off the roof in his underware with sweat litterly dripping off his elbows. He just started taking a new drug (for him)called Maxalt just two days ago.It is to be taken at the onset of a headache. So far so good. It is $80.00 for 6 tablets, he is on his 2nd persription.Don't care about the money just need some help. Good luck to all. Thanks for this site.
Sunday, February 25, 2001 at 17:29:14 (EST)

I am in my 35th year of living with cluster headaches, the first 12 years without knowing what they were. Doctors too busy to simply open a book and note the text book symtoms. I have to say that after all this time I know them very well, and they are as much a part of my life as breathing. I also consider them a hateful old friend. They have given me a pain tolerance that is probably off the scale and an acceptance of life. Since I was in the military when they started and the only way there to get a diagnosis of a broken arm was if the bone was sticking out and you could poke them with it, I have never lost a job because of them, or a days work. Yes, I will go a month or two averaging two or three hours of sleep a night, but I have trained myself to cope. Putting an end to it all? We have all considered that. My worse episode was in 1985, it lasted eight hours rather than the normal one to two hours. After six hours I had had enough, I couldn't take it anymore and nothing was worth what I was going through. I was in my room in the barracks, my pistol was in the trunk of my car in the parking lot. My left arm and leg were dead, totally numb, and I found you can not crawl with one arm and one leg while banging your head against the floor. Two hours later, when it ended, I knew that I could survive them all, that they had taken their best shot and I had outlasted them. That was my change day when I decieded we could live together. Adjustment of life style and attitude to a certain extent, with a mean streak. I love scalions, which we all know that onions will set them off in a heartbeat. Periodically, when the onions are fresh and at their best, I will buy three or four bunches and pig out. Why not, if one will set them off, go for broke. After I have paid my price for eating them, I am able to smile and remind the devil that as bad as he is, I will not let him control my life. The only medication that works fairly consistantly for me is cafergot, and I hate it. I am always sick when I take it, and it doesn't help with the worse ones. I have tried everything else and find that some things work once in awhile or not at all. I know that I will die with them, but not because of them, and I also know that I can live with them, not just exist. For those of you new to them, my heart goes out to you. So here is a spiritual hug, and encouragement that you can live with them, and prosper. God bless.
Galen C. Dukes <>
Cedar Rapids, IA USA
Sunday, February 25, 2001 at 00:57:26 (EST)

Thank you so much for your site. While I am being treated fairly successfully by a neurologist, it has helped me quantify what I am experiencing in a way I have never been able to do before.
Kelli Hendrickson <>
Marlborough, MA USA
Saturday, February 24, 2001 at 21:33:34 (EST)

First of all, I want to tell you all about an amazing coincidence. Roni Sue, the last poster.... Well, her daughter, and my daughter, are friends from Manhattan Beach... but we moved to Virginia this past year. Then, on a TOTAL coincidence... I find this post about her husband Alan! What a strange coincidence! I started having CHs when I was 13 years old, and for years suffered silently, thinking I was a nut or something, or thinking I had *really* bad sinus problems. The clusters became more frequent & more severe over the next several years. Doctors were NO help (this was the late 70's & early 80's... no such thing as CH then :) ) In desperation to find something, I began seeing a chiropractor (actually, for another injury first...) and after a couple of treatments that did not help, we sat down and talked... and it was my chiropractor, strangely enough, that diagnosed me as a CH sufferer! She had read about it in a journal.... and when she told me that she suspected CH, she said, "stop coming here, chiropratic will do no good for this." (Dr. Donovan, I LOVE YOU.) Anyhow, a year or two of 1-month-long clusters that were 3 months apart went by, and quite by accident I learned that VERY VERY VERY strong COFFEE would relieve an attack. I learned to put about 5 tablespoons of instant coffee in a cup with lukewarm water and some Equal... and then choke it down the best I could. The HA would vanish in about 15 minutes. I used this technique for YEARS, successfully, but it began to really eat at my stomach... so in the late 90's I went to my (then) MD group, Bay Shores Medical in Redondo Beach, who was willing to help me to try whatever might help. We tried imitrex. no dice. We tried 100% oxygen. no dice. We tried all kinds of stuff. But then the MD said, "well, if caffeine seems to have helped you before... let's try a really old drug. How about some Cafergot; but, in suppository form because it delivers to the bloodstream faster." Cafergot is MAGIC for me. Only a 1/3 dose will stop any CH 2 minutes into it. I end up with a rather lightheaded feeling afterwards.... but it beats the holy heck out of the alternative :). I'm pleased to say I've now gone about 7 YEARS without a significant CH that I could not immediately abort with Cafergot. Oh, and Roni, L says "wazzup" to J. :) Tim
Tim <>
Bristow, VA USA
Saturday, February 24, 2001 at 21:32:46 (EST)

My name is Roni-Sue and my husband’s name is Alan (age 47). Alan has suffered from CH for approx. 15-20 years. Some years were better than others. Sometimes he would go through 2 or 3 cycles a year with them which lasted anywhere from 1-12 weeks. He has tried many of the different drugs, including beta-blockers, water treatments, ice treatments, sprays, and everything in between. The first form of relief was oxygen – but that only provided temporary relief. The doctors then prescribed Prednisone to try to break the cycle – which worked most of the time – but it took days for that to happen. During the cycle, his neurologist prescribed the Imitrex injections and nasal spray. That worked for him immediately but a few hours or a day later he had more headaches and the doctor had restricted his use of Imitrex. After that cycle was broken, I found out about a nutritional program that both of us are following. He has been headache-free for 18-20 months now and we contribute those results to this program. The program involves a home test. We hope you find what works for you. Best Regards, Roni-Sue/Alan []
Roni-Sue/Alan <>
Manhattan Beach, CA USA
Saturday, February 24, 2001 at 18:58:30 (EST)

Thank you Thank you ....for this web site.....It's good to know I'm not the only female with CH!I really can relate to ,too many of these stories....all I can say is HANG ON.
Friday, February 23, 2001 at 17:10:48 (EST)

I actually rejoist to find this site. When I read the devil I burst out crying. It was the first time I ever heard someone describing what I have been going through for ±2 years.Thank you and the best of luck to everyone
joke <>
Leiderdorp, Holland
Friday, February 23, 2001 at 16:21:28 (EST)

i just got out of the hospital after a 4 day stay. i am locked into a permanent migraine, cluster stage. drs. have me on O2, lithium and verapamil. i feel almost like giving up. does anyone have any other suggestions. imitrex works for only 2 hours. whoever has the answer, i will be endebted for life. God Bless
john <>
miami, fl USA
Friday, February 23, 2001 at 09:18:36 (EST)

Hello, I am 33 years old and approximately 2 weeks ago while traveling on a plane from New York to Florida I suffered what was probably my first CH which was short lived but unexpected since I dont usually get headaches. While on vacation and drinking a beer in the jacuzzi another similar headace came on fast. It was located on one side behind my eye which eventually began to tear. I left and went to my room where I cluthed a pillow and waited for it to stop. It quickly reversed its course and within 25 minutes I was up and about but was curious to know why I had two similar headaches. The week of my vacation continued with two other short but extremley painful headaches. My wife and I decided if it was to continue I would make a doctors appointment. It did continue back home and at work and came on at any time during the day. While at my job I experienced a series of very intense headaches over an extended period of hours. There was no place to hide in my office building so I went into the bathroom stall to ride out the pain. My eye was tearing and drooping and I eventually let my superior know the situation and he offered me a car service to take me to a hospital or go home. I took him up on his offer and the car service drove me from Manhattan to my doctors office. During the ride all negative thoughts came to mind about the cause...was it a tumor,brain cancer etc. and if it was what would my wife and kids do. When I got to my doctors office they diagnosed the problem as another sinus problem. Up to that point the only reason for visiting the doctor was for sinus problems. I must note here that one week prior to my vacation I did develop broncchitis which provoked heavy coughing. The doctor prescribed medicin for sinusitus. Two days later while having a late night beer with my friend I was going to bed and began another attack. This prompted my wife to call our doctor who prescribed prednisolone which i began taking and for a few days it seemed to have an effect to the point that I canceled an apointment with my doctor to follow up. Two hours later while taking a ferry across the hudson I was once again overtaken by a fast immense headache. I tried to call my doctor to reinstate the apointment but waiting for operator assistance was too much to bear while in the midst of the terrible pain so I just got on the train and closed my eyes. If you were to look at me it was if I was crying on one side with my nose starting to run. It was over fast and when I got to my doctors he asked me a series of questions which prompted him to return with a book from which he read most of syptoms I have been experiencing. The odd thing was he was reading from a book which explains just how unknown to many this condition is. Until that visit I have never heard of a histamine cluster headache. I spent last night on the web sites gathering as much information about this condition because up to now I have always been in good health. I consider myself able to withstand a high degree of pain but in the last three weeks have experienced a tough dose of complete displeasure with a vital body brain. Needless to say I am a little concerned now that I seem to know what this is (pending my MRI scan in two days). When I dont have a headache I still feel funny in the head as if part of my brain is falling asleep. I also feel a great amout of pressure on the painful side. The best I feel is when I first wake up , but within one hour i feel that weird feeling again which does not end and keeps me aware that another full blown headache could be minutes away. My question is... is this just the beggining, when will they stop,will it return and what do i do to ease them when they develop? Thats all for now as I prepare for my next daily bout with pain....I just hope i am not doing anything important when it decides to come.
Pete Valois <>
New City, NY USA
Thursday, February 22, 2001 at 15:18:15 (EST)

Hello All! First time at this site. Feels good just to be able to say, "Yeah, that's how it feels!", and know there are others who will understand. I'm 53 and I've been suffering off and on with CH for 20 plus years. I'd been free of the Demon for a little over 2 yrs. (a record for me) when the little "darlin" whacked me right after Christmas last year. Been having 4-5 dances a day since. Scares me to go to sleep, yet I really want to beat this. I've tried everything. The only help has been Imitrex; and it doesn't always work. Sometimes working in my woodshop helps; but that took on a whole new meaning last Mon. I ran the middle finger of my right hand into the blade of my tablesaw. Youch!! Took off a good chunk, bled like........well whatever, point is I'd wake up with the Demon AND pain in my hand. Had to decide which meds to take. Choice wasn't hard, Damn the hand, full speed to Imitrex. Since that first day, my hand doesn't seem to hurt at all, unless you count the time my daughter dropped her book bag on it. Would welcome any input for emerging abortive meds. thanks, Derek
Derek Moss <>
Scottsdale, AZ USA
Thursday, February 22, 2001 at 11:55:45 (EST)

Suffered since 1985, with periods of remission sometimes lasting years. Longest period of remission was 1993 to 1999. I though I had it whipped. Ha! Came back with a vengeance in November, 1999, lasted for almost five months, sometimes 4 or 5 times a day, spent a fortune on Imitrex. Was finally prescribed prednisalone (?), a variety of prednisone. Regular prednisone did nothing, but the prednisalone stopped the headaches cold the day I began treatment. Now, it was heavy dosages (starting out with 100+ mgs per day, tapering off for thirty days), but it worked! Been peaceful since last April; crossing my fingers. Try the prednisalone, if you can. Maybe it will work for you. Hang in there, folks. It can't beat us.
John Tarpley <>
Norcross, GA USA
Thursday, February 22, 2001 at 10:57:42 (EST)

i am 35 years old i've been suffering with clusters since i was 16 .i've tried different types of docters but none have helped, i had been pain free for about 5 years till the other night ,now they are back and getting stronger
Randy Fuchs <bshomebods@aol>
blue springs, mo USA
Thursday, February 22, 2001 at 10:43:29 (EST)

Over 30 years with Clusters...but 3 years ago I found relief on my own. Take a moment to read my post. Been there folks, the darkest moments of my life were clusters.
David <>
Park City, UT USA
Wednesday, February 21, 2001 at 23:41:11 (EST)

I am new to this site but have been suffering from Cluster Headaches for the last 5 years. I am a 25 year old sales and marketing director for a swimming pool company in Sydney Australia. My clusters started in 1997 when I made a trip to England for business for approx. 3 months in February and the change in climate seemed to have immediate effect on me. The change from freezing temps. in Britain back to the summer in Sydney proved to be the trigger of my cluster for the next four years. This year was the first year I stayed in Sydney and yes I am currently experiencing another cluster. Medication seems to have a short term affect / so too oxygen but this cluster is now going on into its twelfth week and I am fed up to say the least. I do not cope that well with heat and rely on airconditioning as I am in the car for the most part of a day, and therefore believe this dramatic change in temp's. all the time may well be the cause of this cluster. I hope someone can shed some light on similar experiences they may have had as I can never receive a definate answer from any G.P or neuroligist I see - except that I suffer from CH.
Paul <>
Sydney, NSW Australia
Wednesday, February 21, 2001 at 21:38:39 (EST)

Hello,I was diagnosed with cluster headaches after numerous test ruled out tumors, muscle damage, spinal damage etc, at the age of 9. Now I am 27 and have learned to deal with pain everyday. If there is no pain, I wonder how bad it will be next time, will it be tomorrow? There isnt much literature on this, so I just get by with trial and error. I accidentally found this site looking for information on terets for a girlfriend. I am going to look thru the site some more and maybe have some conversation with others. No Worries, Melony
Melony <>
knoxville, tn USA
Wednesday, February 21, 2001 at 13:05:45 (EST)

I've suffered CH for a little over 20 years. Diagnosed when I was 21. It's been wonderful finding this site. Such a wealth of information. And although I'm sorry so many suffer, it's wonderful to have a place where others understand.
Tim Case <>
Costa Mesa, CA USA
Wednesday, February 21, 2001 at 02:28:13 (EST)

I have written this site before but since then I believe I have found a natural drug that works for me and would like to share it with you hoping it will help someone else.The pill is a sulfur drug which helps the blood flo more freely through the blood vessels.You can take two to four a day,I found three worked for me.If I only managed to take two a day I would get just a tinge of pain which would remind me to take the third.I know no more suspense,the name of the pill is methyle sulfonyle methane(MSM).I have done a little research on this pill and have discovered that the best brand name to purchase is Flora.Flora uses the hole plant in the pill which I found out that other brand names will use additives to fill the pill.They are not that expensive compared to perscription drugs for clusters.I live in Canada so I decided to go on the Flora website to see if they sell this brand in the United States,and yes they do.So please they worked for me,go to your natural food store and purchase a bottle and try them .E-mail me and let me know how you make
Katherine Burgoyne <>
Bridgewater, Nova Scotia Canada
Tuesday, February 20, 2001 at 21:54:51 (EST)

For the past 25 years I have had CH. After a period of two years CH are back with me. Hope I can make it through the next two months of pain. To all of you suffering from CH I pray for you.
Riel Lotter <>
Tuesday, February 20, 2001 at 18:30:13 (EST)

Today is my lucky day!!! I discovered this helpful site!
Piera Ravazzoli <>
Alessandria, Italy
Tuesday, February 20, 2001 at 09:35:44 (EST)

Glad I found this place.Have had headaches for 10+ years, have tried all the drugs. Imitrex spray seemed to work best , but how it is losing it's effectiveness. Have gone from episodic to cronic{Have one now}. Tired of being treated like a junkie when I ask for pain meds. Y'all take care and thanks for being here for me.
Mickey <>
Deer River, Mn. USA
Monday, February 19, 2001 at 21:26:20 (EST)

My mum has suffered from chronic hadaches for the past 25 years, 365 days a year, 24 hour a day. She has tried many medications,has had two MRI's, and a variety of diagnosis. Her headaches are always on on the back left side. The doctors feel it has something to do with her occipital nerve. The only drug that helps, slightly, is an anti-inflamatory. Recently she was listening to CBC radio and hear Jim Kite, from the Ottawa Citizen describing his headaches. They were amazingly similar to my mother's. He received treatment at a clinic in Cicago with Dr. Kelly. If you any information, please contact me. Thank you, Lisa F
Lisa F <>
Lethbridge, AB Canada
Monday, February 19, 2001 at 15:37:59 (EST)

I have been hiding my pain for 30 years!God bless the person that started this Web site.I have CH, every 9-18 months,4-12 weeks episodes.I gave up trying to maintain a full time job years ago,employers always figured I had mental problems.This is the 1st time I feel like someone understands.Family , freinds and a wife have left me,(CH realy lets ya know who loves ya)the only real friends I have are credit card companys , they let me charge up all the meds I don't have money for (LOL).I have million questions, and would love to find a doc, that would work with me,and not keep shoving pain pills at me.I would also love to help some poor chronic anyway I can,my burden is nothing compared to those poor folks.
Richard Triplett (Trip) <Bebop1111@aol,com>
Surf City, NC USA
Monday, February 19, 2001 at 10:44:11 (EST)

I am 27 and I have had cluster headaches for 11 years.
Matthew Skinner <>
Elroy, wi USA
Sunday, February 18, 2001 at 18:01:27 (EST)

As a CH sufferer in the UK I was most grateful to find your wonderful site. May I also reccomend to fellow Brits a similar site in the UK? It is and is most helpful. Also , I have been helped a great deal by a Dr Manjit Matharu in London who, if you e-mail him, will send you a questionaire to fill in for his survey which aims to help us all. He is at Hope this info is of some help. My thoughts to all of you out there who are suffering at this moment. Christopher Parker
Christopher Parker <>
Manchester, United Kingdom
Sunday, February 18, 2001 at 16:30:15 (EST)

Finnaly I found a site of other people who suffer from these clusters, not that it helps the headache, but reasures me that its not a problem strickly targeting me. I can only hope that research is being done somewhere that deals with a cure. Any new comers feel free to contact me via E-mail
Robert Ockuly <>
Parma, OH USA
Sunday, February 18, 2001 at 12:06:29 (EST)

Thank you for adding the site. I did not know there were so many others going through the same thing. John
John <>
Dover, NH USA
Sunday, February 18, 2001 at 08:17:29 (EST)

Thankyou so much for developing a site devoted to us out here who suffer these terrible things. It has really given me hope (by the way, I have found it almost impossible to get diagnosed because of the fact that I am female and of course this is "rare", or so the doctors say. I am very much interested in your site for all the info you have about them. Once again, THANKYOU for giving me hope!!!
Tigger <>
Sunday, February 18, 2001 at 02:01:19 (EST)

I can't believe I have found a site dealing with exactly what I go through and at the moment going through. I am excited about finding "you" and can't wait to find out more about these terrible things!!!
Tigger <>
Sunday, February 18, 2001 at 01:55:31 (EST)

hi i am a 33 yr old nursing auxilery at a rehabilitation hospital in leamigton spa in the uk.i was diagnosed with cluster headaches when i was twenty one and have been suffering ever since.i have newley got access to my first computer and find it a little more reassuring that i am not on my own as it is the sort of condition that you feel very isolated and alone with .i am currently in the middle of a cluster and am feeling really low,as this is the first attack for fifteen is nice to be able to share this with people that understand and know how you feel.even being in the medical profession you still feel that the minute you mention the word headache people think you are a bit of a whouss.why do you have all these weeks off for a head ache.i hope having found your site that i can meet and share thoughts and experiences with others like myself who know the real story behind the 'DEVIL'.
steve barker <>
coventry, england,uk
Saturday, February 17, 2001 at 13:37:42 (EST)

I'm a retired female R.N. with a 43 year history of episodic Cluster headaches. I was working at Cleveland Clinic at onset and immediately diagnosed. At that time I tried DHE injections (no help} and Sansert which helped slow the frequency of the headaches. I was warned at that time never to take birth or other hormones. My headaches cycled every year (spring) unless I was pregnant, Then even if I was due for a clcle it was delayed until shortly after I delivered. Some years I would have 2 episodes each lasting about 6 to 12 weeks. The headaches then cy cled every 2 years even after menopause. The last episode occurred after 3and 1/2 years at age 63 and I have gone another 3 years free. Thank heavens. I have tried standing on my head to abort a headache, Oxygen , heavy steroid doses , nose drops or anything else I read. The things that helped me jogging at onset sometimes aborted a headache. Sansert ,as I mentioned. Prednisone. But the only drug that stopped them immediately was Tegretol!! I hope these experiences help someone else. Clusters are horrible! Self hypnosis has helped me endure the pain also.
Kay Ness <>
Saturday, February 17, 2001 at 12:43:41 (EST)

CH's for over 10yr hopitalized 5 or 6 times one dr, supposed to be the leading authorty in the world saved my life they treat me with drugs that are not FDA approved I believe with this site we are going to come up with a cure!!
Bob <>
Salem, VA USA
Saturday, February 17, 2001 at 08:24:18 (EST)

Cluster Headache sufferer for about 20 years. Finally diagnosed at the Diamond Headache Clinic 2 years ago. Up till then mostly dismissed by Doctors to "take a couple of asprin"
Cecilia <Athcarne@aol,com>
Lisle, IL USA
Friday, February 16, 2001 at 22:48:51 (EST)

Well i'm back just to let you all know that life is wonderful. Haven't had an attack for @ 3 1/2 weeks. Anyway, it's been great knowing i'm not alone, but have compassionate people out there. well bye and see you next time, probably @ may or june when my next ch episode will probably start. GOOD LUCK TO ALL, AND MAY THE HELL WE GO THROUGH STOP ONE DAY, BEFORE WE DIE!
Friday, February 16, 2001 at 09:47:43 (EST)

I recently began looking into having a gamma knife procedure done to help me deal with my cluster headaches. Does anyone else know anything about this? I've heard good things, but I'm still skeptical. Please help!
CHris Waters <>
waynesboro , VA USA
Thursday, February 15, 2001 at 18:00:52 (EST)

Hi, I had my first CHA episode about 12 years ago. I am currently number 5 and it has been the worst. I am looking for some info. In the past I would have a coupl HA a day for 6 to 8 weeks. The HA where very intense but only lasted about an hour. Now, I am having 2 to 4 hour ones at night. After my last couple bad nights I have experienced a residual discomfort all day. It presents as a tight or tingling feeling on the affected side of my face. My hair feels tender when running and through it. My eye has been dry and somewhat light sensitive. Help is this still CHA just getting worse (Please God no) or am I starting to have something new? I know I am fortunate to only have cycles ever couple years but I do not remember these post HA symptoms please any input would be appriciated.
Adam Hall <>
Pittsburgh, PA USA
Thursday, February 15, 2001 at 17:43:51 (EST)

I have been suffering from these headaches for about ten years since i was around 16. However, i just found out last night what the heck the problem actually was. I havent had a cycle hit me in about a year. Doctors have told me that they were migraines, allergies, ect. I've done the allergy shots, claritin, and many other medicines only to find out i'm not allergic to anything. I've gotten a headache every night for the past two weeks, and am praying that this cycle ends soon. The other night i had to leave my girlfriends house because i felt bad for keeping her awake. Being the wonderful person she is she tood the initiative to look into my problem. She came across this web cite and was amazed to see my problem described in so much detail. She could not find one single symptom that i did not show. It was also great relief for my to finally know the cause for this unbearable pain. My doctor did actually prescribe imitrex for me a couple of weeks ago. Although he still thought he was presribing the drug for migraines. It helps some of the time. The problem is my insurance only covered the pill and it takes a while to work. I'm for sure going to look into the oxygen and other remedies on this board. Any other tips would be greatly appreciated. thx
cliff jaeger <>
austin, tx USA
Thursday, February 15, 2001 at 13:58:16 (EST)

I have had three bouts of cluster headaches in my life. I hadn't had any for seven years until last night. I woke up after 30 minutes of sleep with one and then had another 1 hour after waking.
Robert Rickun <>
West Hollywood, CA USA
Wednesday, February 14, 2001 at 23:04:42 (EST)

Hi, my name is Tim,and I have suffered with cluster headaches for 16 years. This is my first visit to your web site.
Tim Wingert <>
Ft. Loudon, PA USA
Wednesday, February 14, 2001 at 19:01:43 (EST)

Hi. I'm Simon. I've been living with Clusters for 10 years, and am now on my 5th bout. I am 25 years old, and am really struggling to come to terms with having to live with these for much longer!!Here in England I cannot get oxygen by prescription, as our Health service deem it too expensive to justify it. I have not heard of Imitrex before, but have tried Rizatriptan, Imigran injections(sumatriptan succinate), Tolfenamic acid 200mg, amongst others for treatment during an attack. For prevention, I am currently on verapimil, my 2nd year on them, Sanomigran, and Prednisolone steroids ( but only during an attack). To be honest I have little faith in any of these drugs, as I still get bouts, and the attacks seem to get stronger. My father seems to have a similar thing to myself, but I dont feel that it is Clusters as he prefers to be alone and quiet during an attack. Sometimes I feel very alone. My partner is very supportive, but their is nothing he can do for me, and I think he feels very helpless. I am so pleased to of found a site like this as I can see that I am not alone at all.If you are readind this, are or know of a sufferer in the United Kingdom, please E-mail me.
simon stringer <>
birmingham, England
Wednesday, February 14, 2001 at 15:49:58 (EST)

My husband suffers from CH, this is his 3rd bout, about every 20 months, he is now in his 3rd month, tried everything, imitex does not work. Oxygen seems to be only relief. Has from 3 to 6 per day. Neurologist prescribed a seizure med this week called Neurotin. We'll see if this helps, also told my husband to visit an ENT or Dentist because his jaw is so swollen on the side his headaches occur. I think its from all the pressure he appies! One of our friends told us that the silver fillings in the teeth have something to do with clusters, anyone else heard this? I feel for all sufferers, My heart goes out to my husband. It is so hard to watch him suffer and know there is nothing I can do for him. He sometimes says death would be easier, GOD forbid. Lets hope this bout is near its end!
lori smith <>
Bluffdale, UT USA
Wednesday, February 14, 2001 at 08:23:47 (EST)

Been dealing with ch for 21 years.Ive been free from the agony for 3 yrs but im back in cycle again.Ive dreaded this moment and had hoped it wouldnt come back.Its just like i remembered the pain is unbelievable.I havent slept in 4 days imitrex is my only salvation.My wife knows its going to be a long 3 mo.Why Why Why cant they find a cure for this sometimes death would be more wellcome.
Terry <>
white pigeon, mi USA
Tuesday, February 13, 2001 at 15:17:44 (EST)

i am 35 years old i have suffered clusters for over 20 years i would welcome any comments on cluster
john rippey <>
Tuesday, February 13, 2001 at 10:43:58 (EST)

I have suffered from vascular headaches since I was in my teens. Many have told me through the years that my headaches were migraine or sinus. I thought maybe they were migraines, but my symptoms never really fit a migraine a migraine attack. This past month I started another bout of headaches. I decided to check out the internet to find out what kind of headaches I am getting. The description of cluster headaches fit me exactly. I went to my doctor and told him. He concurred and gave me imitrex nasal spray to try. I found it works only when I catch an attack at the onset. I went back to him and he reffered my to a neurologist. She put me on verapimil and a medrol dos pak and scheduled a MRI on the 22nd. The steroid she put me on has lowered my immunity and now I have the flu on top of my cluster headaches. I don't understand why she put me on the steroid. The verapimil worked for about five days. My headaches are back again. I woke up at 4am this morning with a headache. I'm glad to find this website. I've been so frustrated and miserable lately.
Laura Lincoln <>
Monday, February 12, 2001 at 12:14:12 (EST)

Hey there all my fellow endurers. I am a long long time sufferer of CHs. Would you believe i started a age nine? Neither did the doctors i 've had over the years. I am now fifty-four years old, and I can tell you exactly to the day I will start experiencing my initial bouts. This year will mark my forty-fifth year. I have been diagnoised with everything from Trigeminal Nuralgia, eye problems, sinus infection, diviated septum, craziness, tension HAs, allucinations, you name it, if it has anything to do with the head, I've been diagnoised with it to explain these "Monsters". since I served over twenty-five years in themilitary, My physicians have chenged from every episode to the other. I start out with the "guessing Games" and the "Let's try this one" to "You should see a Psychiatrist" As a flyer, I came across the Oxygen relief many years ago. During one of my Really bad episodes, I was on board the plane as a crewmember (Not pilot!) We were practicing one of our many "Emergency drills, which calls for us to don oxygen, immediately. i started feeling relief almost immediately. this occured over 22 years ago. Since then, I have had to inform many of my care-giver doctors of the O2 treatment and what it has done for me and my bouts. I was even authorized to take home as much as 10 portable oxyen tanks from our aircraft for home use when needed by our Flight surgeon on many ocassisons. I would have access to refill them when needed, and return them to the base when my bouts were over. Anyway, I just want to say to all of you. "If you find something that works for you, Use it!, Tell your doctor first hand and insist that he/she tries that method first before they start experimenting with others. By all means try the new prescriptions, treatments, and whatever an "Informed Physician" offers, but to help youself deal with the problem, Only You know as the individual suffering and have suffered: Tell that doctor, first "What has worked, what results you've had with other suggested treeatments, and what you're willing to try for future treatments. Ask for advice on what's new, what's worked for others, and length of time should you give a new treatment before you stop it completely. Believe me, some meds have not worked right away, but with time and monitoring the effects, they later on proved to be beneficial.. So please, all you guys. take it from an old grandpa and long time sufferer, Don't just passively live with the pain, don't let the doctoer use youa s a test subject, Get your relief first and test what will be of benefit the next time. It's your head, It's your pain and it's your decision as to how much you are willing to endure before you take control of your treatment. Doctors are great and I appreciate them and all they try to do, but you are the master of your own body, and you only can tell that doctor if their suggestions are beneficial to your needs. Many doctors are stillout there playing guessing games with your pain. "Don't stand for it!" Alright, I'll get off my little soapbox. All my best to you and your future success in fighting this "Mr. Bill"
"Mr. Bill" <>
Oklahoma City, Ok USA
Monday, February 12, 2001 at 11:11:27 (EST)

Hello, I've been a sufferer of CH for nearly thirty years. Although I have experienced severe pain as described by other sufferers theirs does seem to be rather more intence. During the last few years I have been finding relief by massaging my digestive tract in the direction in which the colon lies i.e.from bottom right,up, left across transversely and left down. I noticed that there seems to be muscle spasm (like a knotting) somewhere along the colon.Since I discovered this method of treatment the amoun of pain suffered in my own case has been drastically reduced. I still need to get out of bed two to three times each night when the period comes, and it is still draining but I know if I persist the pain will subside. I have adopted using a massage oil since with so much rubbing the skin tends to become rather sensative. If anybody has any questions regarding this technique please let me know. Maybe it will work for you.
Terry Menard <terry@menard>
Zurich, Switzerland
Monday, February 12, 2001 at 05:29:36 (EST)

Hi everyone. I'm 58 yrs old and have had CH for 10 yrs now. I've been through the whole spectrum of drugs so far and even got strung out on Percondan. That one took alot of wind out of my sails. Anyhow, I currently take Sansert, Verapamil and breath Oxygen when I can get to it. I also use DHE45 which is an injectible med. It will get rid of the CH in approx. 30-45 minutes. That's only a last resort. I usually keep a kit of meds with me just in case. The DHE 45 is injected with a small insulin syringe. Believe me, I've been giving myself these injections in the thigh for years. When it comes to this much pain, I'll do anything to return to normal. Once again, this is only a last resort and you can't do it over and over, plus the med is expensive. Finally, If I'm at home and I feel the monster start to come on, I quickly take 2-3 Excedrin Migraine (for the caffeine) and run to the Oxygen tank, and run it an 90 liters/min. Most of the time I can get rid of the CH in 5-15 minutes if I'm fast enough. This even works for the ones that get you up 2 or 3 times in the middle of the night. I hope that someone out there can use some of this info to help. Talk to your neurologist(not your primary physician) for help. Good Luck
Barry Sachs <>
Westminster, Md USA
Sunday, February 11, 2001 at 19:53:07 (EST)

Hello my name is David. Thank GOD for this site and the people who've created it. I've been suffering from Clusters for 15 years now. In the middle of an episode right now.Right around 7:15 pm will be the key for me.Last 3 nights you could have set your clock to when my friend shows up. Today,I told my wife I was going to log in at GOOGLE and type cluster headache.Well here I am. I will let go for now and tell you more later. Drive On. Dave
david <>
stoughton, wi USA
Sunday, February 11, 2001 at 19:35:02 (EST)

Yes my name is Julie and I suffer from migranes. We have tried imitrex and it makes my tummie upset. So I have found that taking Exedrin to be the bust medicine as long as I take right before the headache gets worse. My son also gets migranes I would hope that he would not get them but he does but when his comes on he has to stright to bed. Thank you for the time to tell you about headaches.
Julie Saathoff <>
Panama, Il USA
Sunday, February 11, 2001 at 17:41:12 (EST)

Hey all you other poor poor bastards like myself who suffer from this! I have been dealing with this for the last 2 weeks (2nd time of episodic affliction) during my 4th year univeristy.....I am sooo thankful to this web site and to the others who have compiled data and info to try and lower the intensity of pain and duration. I will always try to post any information that I come across and help in return! The strange thing with my case is that my first bout was fought 2 years ago and last year when I was constantly going to a chiropractor i didnt have any demons but this year I was delayed for a while on going to my chiropractor and when the weather and barometric pressure and stress levels in my life changed....BAM round 2! Good luck to all of the others who like me have reached level 10 on the Kip scale!
Mike Doran <>
Guelph, on Canada
Sunday, February 11, 2001 at 17:40:37 (EST)

I hit enter before I finished my first message. As I was saying Cafergot, Prednisone did not work for me. But oxygen was my only relief. I also got some relief from caffiene, good old strong black coffee. I had several in the last two weeks usually late at night and I can get them under control if I get to the o2 right away. I keep an Imetrex kit in my truck at work just in case. I've only used it once late at night. It worked but made me feel like I was hungover the next day. Can't drink, oh well. No chocolate damn! Gotta watch nitrates and msg, I slip sometimes. Good luck all hope we get a CURE soon. SEND a message to 48hours (See Media Information on this site's side bar) We need national exposure to get medical research. Matt.
Matt Kirkpatick <>
Pacifica, Ca USA
Sunday, February 11, 2001 at 15:26:52 (EST)

I've been a sufferer for about 9 years, first bout in 1992. As I've read from some of the testimony mine was not diagnosed correctly right away. After CAT Scans, MRI, and general exams, I was told it was sinus infection. Of course treatments were ineffective. I had several years where they went into remission and when they returned they were less severe. Until March of 1996 I had an attack at work. I tried laying down of course I couldn't. I tried taking oxygen from the safety respirator in the shop, DIDN'T work. Finally went to our Industrial medical clinic. They didn't have a clue. I had someone drive me home and got to my new Family Dr. He listened and finally said the CH word. At least I knew what it was. He sent me to a neurologist who prescribed Cafergot tablets. They were only effective if I took them before the attack. Then he tried Prednisone NOT..
Matt Kirkpatrick <>
Pacifica, Ca USA
Sunday, February 11, 2001 at 15:04:04 (EST)

i would like to know if anyone has these symptoms.. burning face sometimes lasts 15 hour, state of confusion lastings approx 1 hour. heavy painful eyes, sometimes tinnitis, constant throbbing of entire head sensorial cloudiness, extreme weakness in knees and elbows, nauseau, attacks sometimes wake me up at night but often 15 mins after wake up, eyes red and watery, skin on face neck and shoulders turn red, white then red again , sometimes heart will race and difficult not to hyperventilate difficult to cope during severe attacks have had migraines with aura since the 8th grade. At 37 migraine came without aura and much more pain i think i have basilar migraine, facial migraine and cluster headaches. this session has started Jan. 1st and is going strong till today and had to go to the hospital last night. some times my teeth hands and feet freeze i've had 2 MRIS and they have found nothing. please help thanks John
John <>
Miami, FL. USA
Sunday, February 11, 2001 at 11:01:27 (EST)

my husband has suffered from ch for about 2 yrs it is terriable to see him go through this a couple of times a week. he is on lithium 450mg 2xa day and oxygen and lidocaine spray it seem that nothing seems to help these headaches. he doesn't get them as often but the pain seem to be more severe. does anybody think that the imetrix shot would be an add addition to help his pain i'm reading allot of people are usin this drug. i'm also hearing that it is expensive but i hate to see my husband in pain. my heart is out to all of you who live with or live with someone that has these awaful c/h thanks for ant information lori
lori pollard <>
st simons island, ga USA
Sunday, February 11, 2001 at 09:23:58 (EST)

Esto es terrible, solo nosotros sabemos la angustia de nuestra enfermedad Saludos a los jaquecosos. Yo estuve 5 años sin ataques, I am again
Benjamín Dubove <>
Buenos Aires, Argentina
Saturday, February 10, 2001 at 21:04:38 (EST)

Esto es terrible, solo nosotros sabemos la angustia de nuestra enfermedad Saludos a los jaquecosos. Yo estuve 5 años sin ataques, I am again
Benjamín Dubove <>
Buenos Aires, Argentina
Saturday, February 10, 2001 at 21:04:14 (EST)

I've had some success with Excedrin for Migraines (basic ingrediants are Tylenol, Aspirin, and caffiene). I've found that if I take the Excedrin in the VERY early stage of the headache and dissolve the tablets before swallowing, I can stop (or reduce) 60% of them. It's a nice alternative with fewer side effects than the heavier medications. Believe it or not, jogging works also - if you can get past the first 5 minutes of hell!
Salem, OR USA
Saturday, February 10, 2001 at 18:14:28 (EST)

Hi, I am one of those few women who suffer from these killer headaches.I have been suffering on and off now for 12 years. Not only can I get them at night, but I suffer from them at ANY time of the day. Talk about fear. I live with shadow aches all day long. Imitrex has been a savior but only for the first wave, then I am left to writh in pain for up to 2 hours. It greatly effects how I work and how I live. It's nice to knkow that I am not alone in the this feeling of hell. Kris
Kris <Attitude188>
Lake in the Hills , IL USA
Saturday, February 10, 2001 at 16:38:48 (EST)

Hi everyone...I am a 37 year odl male who has had clusters for about 20 years...I seem to be typical...they stay for a few weeks to a few months, then nothing for a few years. Attacks start during the night although I am aware of the feeling during the day. Alcohol is a complete no-no- I am a daily drinker and thought I could test my luck a week ago and was up all night. Good luck everyone and thanks for listening...
rob dow <>
whitby, on Canada
Saturday, February 10, 2001 at 15:13:13 (EST)

I thought i had the BEAST bad until i found this site...
Tony <>
Saturday, February 10, 2001 at 05:06:09 (EST)

Six weeks, afraid to go to sleep. Even then every night. IMITREX, ok but I was to long in pain. Old family Dr. gave me CALAN 240 MG(verapamil). Have not had a session in 7 days thank God Jack
Jack Leonard <cjandjbl>
Charleston, sc USA
Saturday, February 10, 2001 at 04:03:33 (EST)

Just a reminder to US veterans, you can get your perscription drugs for $2.00 a month thru the VA I have had ch for 6 years and have had some success with Shaklee vitamins and chamomile tea, 8 tea bags per day I take 6 EPA, 6 Lecithin, 4 Calcium magnesium, 2 B-Complex 2 tea spoons of cold pressed olive oil daily. This might not work for everyone but for myself I have noticed a decline in the number of headaches from 3-4 to 1-2 also they have dropped from 10 to 7 and often 5-6 on the kip scale.
Mark <>
Bottineau, ND USA
Friday, February 09, 2001 at 23:36:46 (EST)

Hi my name is Darin, I am 28 years old. I have suffered from clusters for what is believed as 15 years about. I am also acceptable to migraines so the correct date is unclear. I drank heavily for ten years. and blamed the headaches on the alcohol. I quit drinking all together a year and half ago and the headaches stayed. a So I found medical help. They actually were diagnosed right away. Which sounds supprising, cause I am from a small town. My headaches will come on either side and the most time I get off is maybe a week. We have tried all kinds of meds. Imitrex seems to work the best for killing the pain. But we can't seem to find anything to reduce the # of them. I am currently taking Paxil, atenolol and just started Depakote. I am glad to find this site. Like everyone else I read I am real sorry for everyone else that suffers from these. But in reading the openning page, I knew, I am home.
Darin <>
Angora, mn USA
Friday, February 09, 2001 at 15:04:52 (EST)

I have had clusters since age 12,as did my father. For the last few years I have become extremely ill(constant pain in arm-hand, abdomen, etc) in fact basicly bedbound. Could all of it be from clusters?
Robin Howell <>
Toronto, Ontario Canada
Friday, February 09, 2001 at 11:06:00 (EST)

My husband has suffered from cluster headaches for 15 years. Just last year I found on the internet Botox injections. Guess what! They work ! He has been headache free for 1 year. Only in August and September does the headaches break through, but without the severe pain he had before. We just praise GOD for this wonderful medicine.
Vicki Catoe <>
White House, TN USA
Friday, February 09, 2001 at 09:22:37 (EST)

Good to know that I am not alone in that others understand this pain however, I wish I were alone as I wouldn't wish this on my worst enemy.
vickie kiser <>
lincolnton, nc USA
Thursday, February 08, 2001 at 20:53:02 (EST)

i've been playing this game since 1984. every other year for 3-6 months. i'm currently into my third month. much different this year. 3-4 per day instead of just one head banger. sleep deprivation does stange things to a person. i've been averaging about 3 hours/night for the last five weeks.
kenneth a. kievit <>
kinnelon, nj USA
Thursday, February 08, 2001 at 15:28:11 (EST)

I've had Cluster Headaches since 1973. In December 1992 they became chronic. I've been disabled from work since Sept.12,1993. My Employer(Pfizer Inc.)has been very understanding. I would love to get to the root of My problem and find out what causes these horrible attacks but nobody knows. I've been on every Drug You can take but they still control My Life. Suicide is an option that I'd rather not take but sometimes I feel like it's the only way out of this. I'm 49 years old and over half My Life has been ruined because of these Headaches.
John T. Martin <>
Groton, Ct. USA
Thursday, February 08, 2001 at 14:32:02 (EST)

I do not personally suffer from cluster headaches but I love someone very much who does. I had never even heard of them until I met him. When he has a round of cluster's I suffer along with him because I want so badly to be able to take away his pain. I think one of the hardest parts is that he is constantly appologizing to me for what is happening to him. I tell him not to feel that way. I am with him because I love him with all my heart. I would never and will never let them defeat us. All I want to do when he is having them is be with him, comfort him in any way that I can and make him as happy as I can during and in between them. I feel that he is so unselfish to worry more about me and what I am going through when he is suffering. He has often said that it is unfair to me and that I deserve better. Well, I know that I have the best man in the whole world. He is so kind, so smart and so well known and respected in our community. Having had to give up a career in law-enforcement that he absolutly loved because he never knew when these headaches might occur, I know was the hardest thing he has ever had to do. I know that he worries that I might get frustrated and leave him. I know that that can happen in alot of relationships but I am in for the long haul. I love this man with all my heart. All I ever want to do is make him as happy as I can and let him know that I will alway's be there.....through the good and the bad. Those who suffer from "clusters" feel alone enough in their illness. I can't imagine loved ones turning their backs on them in there most desperate time of need and understanding. He is my hero. He will not let these clusters defeat him nor will I let them defeat us. I only pray that one day a cure will be found so that all who suffer with them will be able to live with out the pain and without the dread of the next round. I know that this site is for those who suffer....but their loved ones suffer also, and I am here if any of them ever need a friend who understands to talk to.
Debi <>
Bristol, Va USA
Thursday, February 08, 2001 at 10:47:58 (EST)

I am 50 years years old,have been suffering with cronic cluster headaches for the last 26 years. The only thing that makes me differnt from most is that,I have pain 5 out of 7 days a week!!!!! Like most people my headaches come in the middle of the night, or at any time that I feel relaxed. However if I do get a headache during the day it is by far longer lasting. Try to tell an employeer, "I need 15 or 55 min. by myself. That goes over big.
Glenn Barnard <>
st. petersburg, fl USA
Thursday, February 08, 2001 at 04:28:54 (EST)

I have been a sufferer for seven years now. I quit smoking two years ago, and that really seemed to help, but I just started a cycle. I use lidocane spray, and find it helpful to exercise when I get a 3A.M. headache. I know it's no fun, but I do as many jumping jacks as I can and this helps abort the pain faster, combined with the lidocane. Hope it helps.
steve lose <>
Sarasota,, Fl USA
Wednesday, February 07, 2001 at 23:11:24 (EST)

31 y.o. episodic sufferer, non smoker, always right eye.
steve lose <>
sarasota, fl USA
Wednesday, February 07, 2001 at 22:45:01 (EST)

i have been getting them for about 23 years 1 month on and 1-3 years off. my girlfriend is a nurse and she gave me 2 meds to take and they work great within 20 mins. they are (propoxyphene napsylate & apap 100mg/650mg tablet+ esgic plus tab) they work great for me and i hope they can help somebody else. bob
bob <pond1969@aol>
philly, pa USA
Wednesday, February 07, 2001 at 19:09:34 (EST)

What a relief to find this site. I am 27 and have been suffering at near enough the same time every year. I have had brain scans and hospitilization and it took myself to find out exactly what was wrong. I take imigran and it usually takes away the pain after 30mins. I have to abstain from alcohol for about a month whilst i am in the cluster stage, but its worth it to avoid the excruciating pain. Thank you site.
Gloucester, England
Wednesday, February 07, 2001 at 17:21:42 (EST)

I dicovered this site about 2 years ago and now I feel compelled to share my story with you folks. I was diagnosed with cluster headaches about 15 years ago; visited many different specialists including one of the formost specialists in Canada ( London Ontario) all came back with the same prognosis. My symptoms start with an ache in my left upper gum which quickly migrates to the ear and than behind the eye. One participant in this form aptly described it as someone with an ice pick behind the eye. The headaches last for about 20 to 30 minutes which and end with tears flowing freely from the eye. Alcohol will bring on an attack about 45 minutes after consumption. About 3 weeks into each cycle I have an attack about 3 to 4 times each night, this lasts for about 2 weeks. About 1 month ago 4 days into a new cycle I proned my dentist and the next day had my wisdom tooth removed, although there was no apparent infection, the tooth was in perfect condition - no fillings. The next day I had an attack because of the pain in my jaw, but since then everthing has been fine. Tonight I will try a small glass of wine - hoping that I am not being hasty in sharing this information with you who have given me so much. Sincerely Lloyd.
Lloyd Hazlett <>
Bridgewater, N.S Canada
Wednesday, February 07, 2001 at 16:21:56 (EST)

What a fantastic sight! I just discovered it. Can't believe there are so many of us out there. I am a chronic sufferer for the past six years. I use oxygen which usually gets rid of the pain within 5 to 10 minutes. Then every evening I take amitryptiline (spelling might not be correct) and this usually helps me sleep through the night undisturbed by both clusters and night sweats! Doesn't work 100% of the time I guess depending on the severity of the cluster. I still wake up but take oxygen immediately and am back to bed within 10 minutes. Hope this helps someone else.
Joyce Crosbie <>
Winnipeg, MB Canada
Wednesday, February 07, 2001 at 12:10:31 (EST)

I am feeling to trouble speak english. Please send me some easy english book which I can speak english. early action must be appricated. Yousaf
yousaf <>
Islamabad, Pakistan
Wednesday, February 07, 2001 at 05:48:08 (EST)

Well, all of you already know what a relief it is for a CH sufferer to find a website like this! Now I've been visiting daily, and words can't describe the mental help this has given me. I have suffered from chronic CH for eight years now, and I'm CERTAIN that some day there will be a cure. I'm not really too good with english (I'm finnish) and also little embarrassed, don't have a habit of posting to forums.. But Peace and Love to every one of you, and remember: There are people in the world who are suffering from even worst conditions than Cluster headaches, so let's keep our heads up! And help each other =o) Tim
Tim Taylor <>
Helsinki, Finland
Tuesday, February 06, 2001 at 21:30:12 (EST)

I remember my first Cluster attack. I was 18 years old and it was the summer after I graduated from high school. Since then I have had reccurring attacks about every other year. I was not diagnosed with cluster headaches until an E.R. doctor introduced me to them when I was 23. I am currently going through a bout with clusters. They started January 31 and last for about two weeks. I know that I am only half finished with them. My doctor prescribed Imitrex which has been working. My insurance however told me today that Imitrex was too expensive for them to pay for anymore. I got one six spray (Nasal)prescription. That is about four days worth for me. The prescription is 150 dollars for six sprays/Headaches. I am a teacher so that kind of money is not feasible. I am screwed. I have about eight days of hell ahead of me. I try to explain to people what I go through with these headaches but I know they think I am exagerrating. I am finding myself very tempted to self medicate myself. There must be street drugs which can hide the pain and probably cost less than Imitrex. I know this is foolish and extreme but I cannot/ will not go through another night of myself being reduced to a drooling violent convulsing mass of suffering.
Dave Hodges <>
Bartow, Fl USA
Tuesday, February 06, 2001 at 12:49:34 (EST)

I have suffered from cluster headaches since age 7. I find it amazing how little the doctor(s) know about cluster headaches. When I moved to this small town, I had to inform the doctor of the treatments available, recommended, etc...So many of them believe that we are some pain med addicts. If we could get rid of the pain without the meds we would.
Julia <>
Manistee, MI USA
Tuesday, February 06, 2001 at 07:22:50 (EST)

Well, it's 1:19am here in England and I've just been woken up by the pain. Sometimes I feel so alone, that I'm messing up the lives of my friends and family. It's hard to make people understand what it's like but I don't want to bother them. I'm only 22 and know of no-one else here that suffers from CH. My GP actually recommended that I look on the internet because she thought that there must be other sufferers out there. It is dreadful, and I wouldn't wish CH on anyone but I'm so glad I've found this site. I went to see a neurologist recently and he's trying me on Indomethacin - I just hope it works. I feel that I really need to talk to someone that understands - I don't want to be alone
Anne <>
Monday, February 05, 2001 at 20:21:44 (EST)

After many years of suffering, I finally went to see a chropractor. Not the kind that cracks your bones ( I hate that and I don't believe in it) He uses a "activator" and adjusts the bones in your spine with a "clicker" that has a rubber end on it. After all, your nervous system runs through your spine, and when your bones are out of line, they pinch the nerves- and depending where they are pinching, depends on what it controls in your body. In my case, it was the top two vertibrae in my neck that were twisted- causing some really bad migrains. I would go blind in my left eye, and feeling suicidal at times. I have suffered for 22 years now, ever since I was 13 years old. I had a skidoo accident and broke my L3 vertibrae, and did a lot of damage to my neck. Last year (before I met this chropractor) I had cluster migrains from October to Februray. I was desperate. I was introduced to this chropractor with this different method- and damn..... it really helped me. after an adjustment I would go at least 3 days without pain. After seeing him now since last February , and not every week.... I can go without a migrain for sometimes 1-2 weeks at a time. This is progress for me..... and I thought I would share my experience with you, and perhaps it could give you some hope too. some of my symptoms of having bones unaligned in my neck : indigestion sore knees laryengitis (every year) shortness of breath sincerely, Lisa from Canada
Lisa <>
Kitchener, On Canada
Monday, February 05, 2001 at 19:23:42 (EST)

This is a great site. It seems to know EXACTLY what my headaches are like. Any way, I've had them for 25 years. Started when I was 15, episodes general lasted longer than the periods of remission and crescendoed to 9-10 on richter scale. Blighted my life. Over the years the episodes got shorter and the remissions got longer and now rarely go above 7 on the scale (though mostly would reach that point); I now go for 1+ years between episodes and an episode is only a a few weeks if that. So not much of a bother now. Also, each head-ache in my younger days could last 2-3 hours which was ghastly, now 15-30 mins. Originally, Doctors convinced they were psychologically induced (Father relationship), though I never really worked this theory out. Never could stop them coming on, but an immediate dose of asprin and codiene could do the trick - though quite a high dosage was/is necessary - 1000+ milligrams. I have a strong stomach!
Dominic Thwaites <>
London, UK
Monday, February 05, 2001 at 16:33:25 (EST)

Ive been having CH's for about 14 years, tried just about everything, finally 5 years ago a Dr.told me. They hit every day in the summer sometime's every hour on the hour. I work construction driving truck, when they hit I have to pull over because my eye feels like a hot poker with tears streaming down that side, plus my neck, temple,& sinus, don't know what hurts most. Im a 53 year old grandma but still hanging in there.
Faith Pugh <>
Kingston, ID USA
Monday, February 05, 2001 at 14:48:00 (EST)

Ive been having cluster headaches for about 13 years, altho I didn't know what they were until I went to a neuroligist about 5 years ago. I mainly get them in the summer when it is hot. From once a day to several times.
Faith Pugh <>
Kingston, ID USA
Monday, February 05, 2001 at 14:33:14 (EST)

Howdy, I'm in the midst of my first cluster in 3 YEARS (I was thinking I had "outgrown" them; DAMN). This website didn't exist then, so it's great to see such a huge proliferation of info now. Perhaps the most valuable thing is the validation of my experiences, and that my various treatments, and the results thereof, are backed up by the survey data. (I sure didn't think that those Imetrex pills were working as good as the injections!) This website has armed me with knowledge that I can take to my doctor and get some real treatment; the doctor that prescribed Depakote as a preventative - clearly ineffective according to survey results, and that WOULD NOT prescribe oxygen ("too dangerous")...?!?!? Is that actually a good thing when you know more than your doctor??? hmmm... Thanks again! KK
Kevin <>
Redondo Beach, CA USA
Monday, February 05, 2001 at 14:04:27 (EST)

I have suffered for eleven years with clusters and am now cronic. I have thought of suicide on several occasions but have too much to leave behind, my family. I hope this web site helps. It's nice to know that someone can really relate to what I am going through, unfortunately.
Keith Dellsperger <>
Belle Chasse, LA USA
Monday, February 05, 2001 at 13:56:00 (EST)

So glad to have found this site and see that I am not alone in my misery !!!
Mark McCombs <>
wasagabeach, ontario Canada
Monday, February 05, 2001 at 10:03:01 (EST)

I am a CH heart goes out to all who have CH and all their loved ones. god bless you all
Thibodaux, La. USA
Monday, February 05, 2001 at 09:51:51 (EST)

I love this website, I know I'm not the only one who gets a rude awakening at 2:00am with my head in vice, I've tried about everything I can think of to ease the pain. I'd stick my finger in a light socket if I thought it would do any good. It seems like a muscle at the base of my neck starts pulling my head over [the muscle thats connected to my eye ball] then all hell brakes lose... Just wondering if anyone else has that same thing happening.
Mark Sivertson <>
Bottineau, ND USA
Sunday, February 04, 2001 at 15:37:05 (EST)

I am very happy to have found your site. On Friday I had the most frightening headache I have ever had. I suffered from migranes many years ago, but they stopped after my son was born. This headache was definitely different. It was unlike any I had experienced before. It cycled every 10 - 15 miniutes with extreme pain in my cheek area. This went on day and night for 24+ hours. You probably recognize this as CPH. The ER doctor didn't have a clue. I sat in the ER for 5 hours. (You know, scimpy jonhny, cold air, old person dying next to you). He only suggested I see my doctor on Monday. And he gave me a perscription pain killer. After searching your site, I feel better about seeing my doctor. Armed with the information I found here, I won't let her waste time on an "ear infection" diagnostic. If this is indeed CHP, I know there is a treatment, indomethacin. If this is CH, I know this Site will provide great support and more information. I suspect that this type of headaches doesn't occur "just one time" and then go away forever. But now I know I'm not going through this alone. I still have a lot of questions. But I have found generally that you get better answers from those who experience the problem than the doctors who are supposed to treat it. Thank you!!!
Joyce <>
Sturbridge, MA USA
Sunday, February 04, 2001 at 15:30:00 (EST)

Sunday, February 04, 2001 at 13:57:39 (EST)

I recently had cervical surgery, and about two weeks after, started having headaches on the same side of my head that the surgury was done on. All the test the doctors have done have been negative. I suppect Clusters from what I have read on this site. I also suppect the cause may be from the surgery. The doctor that did the operation says it is not from the surgery, and has done NO follow up exrays to prove other wise. I"m lost, depressed, afraid to sleep and I realy don't know what to do next. I just wait around the house waiting for the next round. Can anyone respond to this note?
Ike Morrison <>
Pelham, Al USA
Sunday, February 04, 2001 at 11:58:58 (EST)

I have endured these monsters off and on for 21 years. I also suffer from hay fever, so through the years had the CH's diagnosed as Sinus, Vascular, Tension, and Sinusitus. One night / morning (3:00a.m.) about twelve years ago, I couldn't handle the pain anymore, so I decided to make the rest of my body hurt even worse than my head 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 CH, I was shocked to soon realize that my CH had disappeared! I have since used this method to relieve more than 80 CH's that were above 5 on the "Kip Scale". 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. Try it - it might work for you! More hope: I'm now 40, and have just started a new cycle for the first time in more than 3 years. My average CH is now a 3 or 4; previously they were usually 6 through 9's. Maybe they DO decrease with age! Thanks again for the great web site!
Ridgefield, WA USA
Friday, February 02, 2001 at 17:37:10 (EST)

Thank You for this site. I have been taking the beast for a walk for about 25 years. In a way I wish I was alone, but it is comforting finally knowing I am not. My Dr. retired a while ago, so now I have to do the dance all over again with a new one. Wishing you all a PFDAN.
GR <>
Oakville, Ontario Canada
Friday, February 02, 2001 at 13:44:17 (EST)

This site looks like something I've been looking for. I have been a clusterhead for twenty years or more.
Rick Tanner <>
Toledo, OH USA
Friday, February 02, 2001 at 12:26:19 (EST)

I have suffered with a certain headache for 6 years!wake me up out of sleep,etc.No Dr. could tell me what was wrong,most would say sinus problems(yeah right).6 months ago I found out about clusters,now I have a better idea how to approach it!But why are Dr.s' so stupid to this?If anyone knows PLEASE e-mail me with a answer!Anyway just to add my own way of dealing with this,in case it can help just one of us!I run a bath with water as hot as I can stand it,put my head under the water but keep enough out to breath,this usually releives the pain & headache within 5 to 10 mins. ,at least for me it does,can't hurt,right? & it's free! If this helps anyone please let me know( My heart goes out to all of you that suffer from this,only we know what true pain we go through every time!Bless you all!!!!!!!!!! Sincerly, Daryl
Daryl <>
Tryon, NC United States
Friday, February 02, 2001 at 07:05:37 (EST)

i just found your site because i'm sitting up with the demon. i find that the internet can be a help and is distracting. thanks for being here i,ll write more about my years at this latter.
Stephen E. Tillander <>
Enfield, CT USA
Friday, February 02, 2001 at 02:14:50 (EST)

I am sitting here in tears because i finally found people that explained my life. I am so happy to see Im not the only person who is afraid to go to sleep or feels they are ruining their families lives with these horrible headaches.I have taken evey pill know to man and currently am taking morphin which still is no help.The strange thing is that i am female and heard these headaches do not usually occur to them. I also heard clusters called the "suicide headache" ( thats the closest to the truth yet) . This site could not have come alongf for me at a better time, I was starting to give up hope. Thankyou so much.
lori ann newman <>
palm harbor, fl USA
Thursday, February 01, 2001 at 23:12:58 (EST)

I am a widow of three years to a man who suffered from cluster headaches for 22yrs. He was only 43 when he died from a brain tumor. We tried more things than I can recall for relieve I believe I have somethings to share about what we dealt with from a clinic in Conn. to what I feel now and what they don't tell you or can't tell you. God Bless you all who suffer from these horrific headaches.
Mary Wilkosz <>
Elba, NY USA
Thursday, February 01, 2001 at 16:49:06 (EST)




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