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Below are the guestbook entries from May 2000. Thank you for your continued active involvement in this site and keep those guestbook entries coming! Click Here to go back to the Main Guestbook Hello! This is my first entry as I just discovered the site. I am 29 years old, and have suffered with cluster headaches for about twelve years. I am currently in the middle of a cluster which began four weeks ago. I get around 4 to 6 attacks per week. I realize this is not as severe as many of you, however, I can't imagine any worse pain during an attack. I am a physician assistant involved with the critical care department of a major St. Louis, Missouri hospital. It is frustrating to try and help people daily, and hardly be able to fix my own problem. I am fortunate in having oxygen readily available! I was very excited to locate this site and was intrigued at finding the information on the water therapy. I will certainly try this. I particularly like the recommendation and suggestion at preventing the "washing out of the good stuff". It would be very easy to induce an electrolyte imbalance with consuming so much water in a short period. I might also suggest an occasional gatorade or sport drink between glasses of water. But, whatever it takes, cluster headaches can certainly make you desperate. I don't currently have an e-mail address, but hope to be back on line soon. If anyone has any questions or suggestions, or would like to communicate in the meantime, feel free to write and send the info. US mail. My name is Craig Stewart and address is #80 Elmwood Drive, Glen Carbon, IL 62034. Once I get back on line, I will include my e-mail address. In the mean time, good luck in finding peace with the pain.Craig Glen Carbon, IL USA Wednesday, May 31, 2000 at 22:48:07 (EDT)
The address triciapespisa@aol.com is our roommates address, but she lets us use it, so we can recieve mail here.
My name is Kathleen and Steve is my fiance and he has been a CH sufferer since he was 19 yrs old, he is now 34 yrs old and now falls into the chronic sufferer catagory. I'm a student nurse and will be graduating in december. Steve does everything, he's very talented, but because of the nature of the beast he is unable to maintain a regular job. It's been very hard on us financially. When I first met Steve he hadn't seen anyone for the HA in years. We have no insurance, but now have a nurse practitioner who is very empathic and we or Steve now takes normodyne 100mg twice daily and of course imitrex prn and when we can actually afford it. We pay $112.95 for 6 doses of the nasal spray, if know of something cheaper please pass it on we've been without for over a month, which I'm sure you know is not a good thing. For some reason this computer doesn't consider me active while I'm typing this, so I'm going to send what I've written so far so I won't have to retype it once again. It was exciting to find this sight, I hope chat with some of you soon. Stay Sane, Kathleen
To find this site is an absolute God send. When I do get the attacks I feel very, very alone. I am glad to see that I am not alone. My attacks have started again in the past month and the severity is quite extreme. I hope everyones attacks leave them very soon.
I was diagnosed with clusters five yrs ago. 4-6 wks/yr during winter. Have esculated to twice/yr for last 2yr and I'm still battling for the 5th month straight at this time.
Any info will be appreciated
Is there anyone who does NOT smoke cigarettes who gets chs?
I quit and I still am getting them every night!!!
I have just been diagnosed with "Cluster Headaches". I am a 64 year old women. I have been put on prednisone with rapid taper. and am tapering off now. I haven't had an attack in about a week, but I do have some pain. My scalp is very tender and I notice that my nose is runny and sore. The side of it anyway. Is this usual? Please help
Hi. I've been a chronic cluster headache sufferer since the early 1980's(my early twenties and pre-childbirth). Anyway, I am so glad to find others to talk to about this terrible demon. I have been currently undergoing this last bout for 4 weeks and I'm upset because ny first child is about to graduate from high school. I am mostly upset about the medical treatment. Everytime I go thru this I start with my PCP provider who tries various medicines. This caused a bout with sleep deprivation. Then I was referred to a neurolologist who put me on Topamax and later a steroid. Both had me so sluggish. I am now suffering from anxiety attacks and taken myself off the medicine from a fear of drugs. I still have my Imitrax but I'm even scared to take that. I know it sounds as if I am rambling but I am so frustrated and need to hear from others who've perhaps know of what I speak.
I have been dealing with the devil for about 10 yrs.I found that maximum strength ORAJEL applied to the roof of the mouth cut's the bout by more than half the normal length of time. When I start getting low on ORAJEL I start getting nervous I sure hope my method can help someone else who suffer's like i do I wish you all a good night's sleep.
Please God not again. That little tinge tells me that i will be incapacitated in just a few minutes. I've had 5 in the last 16 hours. When does it ever end? There isn't anything I haven't tried in the last 7 years...crazy things...but hey,.. if it works just for one headache i'll try it. I call them "ragers from hell"....my friends say "what you can't handle a headache?"....i try to explain i would give anything to have a "headache"...these don't even compare to a normal headache. Sometimes I wish I could touch someone and let them experience it for just 5 minutes...they would be running down the street screaming......i actually used to do that..run and scream.. now I try a different cure everytime...maybe one day i'll find one that works...Please God....
michael
Hi mostly guys,new to the site brings happy tears instead of those
hated other ones.Just coming to end of 1st month after 11 free
hope this feeling is true bangers are lasting less time.Will be
back great place to know not along for this hell bound trip alone
but wish everybody that dream of more than 1 yr free!
Hello again. I'm writing about our documentary about headaches and asking for more help. We want to make this programme as useful and helpful to headache sufferers and the general public to raise awareness for the issues. Is there anything you, as a headache sufferer, would want to see included in the programme? Grateful for your views.
Many thanks.
great site.. i've been a "cluster" for about 17 years.First time thought it bad sinus headaches. a couple years later came back and got in to see Dr. D Headache Clinic (Chicago).They have come back every 2-3 years. It's been about 5 years without but there back. Like riding a bike you don't forget "that first feeling".On meds and have shots of imitrex. Ijust want to say for my first writting to all , "you've got to pray, I can't even get though a pray so I just say Please God over and over again. The relief I know is "this too shall pass" I know two other guys who have helped me, Dr. Bob and Bill W. Thanks Mike L. Oak Park Ill USA
hi
Has anyone tried Neurontin Cap 300mg? It works for me.
Age 68
Cluster --- Years
Have them under control for the last 3 years
Why --- Oxygen, Melatonex and Mostly praying to St. Jude
The Patron St. of things Despared of......
I have not had any sleep per say for about 2 mounths now. I am so tired. I am brought to tears reading all your emails. Just knowing someone out there really understands what I go makes me know I am not CRAZY. I have found a good nurologest. That I really think keeps up on the latest. But guess what. It does no good. I guess I should be happy that he has mad them go from eight a night to one to three. But I cannot take even one. I to do not want to die. I keep thinking just get though this one. You cannot think about the next one. If I do thats when I loose hope. I have a wonderful husband and without him I am sure things would be so much different. Thank God for Him.This eposode shouls be over soon , if I can just last a couple more weeks. this websight is wounderful. Thanks for listening.
Correction to free priest's phone # 678-413-1049 Fr. Edward+
I am 50,male,chronicCH since 9/98.I had episcodic clusters starting @age 31.I resigned my job in 9/99.(Jesus, I've never seen a pig-headed group of people like ch's for 'playing hurt.'I wnt on full time disqbility 1/2000.I'm an Episcopal priest.I guess y'll are my parish now.You have a priest now,which is a dam useful parson to have @ times.[apart from puns like the one just got.]So here is my offer to become this site's chaplain.You'll have to telephone me.I type very slowly.My number is 678-4141049.I can tell you my boni fides then,& you can check me out ,if you wish.My real crendentials exist as a person who has suffered just like you do.I have spent many hours over the last 19 years thinking of suicide, as well as a few minututes holding a .25 cal. Mauser to my head.To me,it is a good day when I don't kill myself.But, I have a lot of resources available which make me believe I won'do myself in. Most of why I have'nt is because of my training.Exercising my faith consists of Meditation,makiing love to my wife,hunting for beauty,&laughing.I also the meds out there.Any of you guys can call me. ifyou can't afford the long distance tarriff,leave me your number & I'll call you back--this goes for sisters & brothers who live in the UK orAustralia. I have always had the money given to me by The Boss when it will help his children.MAY GOD Bless & keep you & those whom you love this day & always...Fr.Edward+
I suffer from cluster headaches. My father gets them and he passed them to me. Lately I have been in one of my bouts that has lasted a month with no relief. I am 20 years old, go to school, have a fiance and its like i can't even enjoy being young. I get woken up in the middle of the night in such unbearable pain. I often pace back and forth, rock back and forth sitting on the bed, bang my head into the wall hoping that the pain will subside but it only gets worse. It usually lasts about 3 hours and then i have a dull pain in my head till the next attack hits. I am afraid to go to sleep at night because I know that the pain is going to hit in a matter of time. I went to the hospital for the first time the other night and it was like no one could help me enough, the pain just kept on getting worse and worse. I feel so bad for me fiance, he looks so helpless when my attacks happen and all he wishes is that he could do something to help me. The worst part of all of this is that no medicine seems to help me. My doctors first thought that these headaches were migraines but then realized that they were clusters. My body is immune to most medications and I wish I could just get one that will help me. This site has given me hope to seek other means of therapy and to help me understand what is going on with me. THank you all so much.
Michelle Margulies
Coral Springs, FL
Hi,
my name is jackie i suffer everday from a headache. i get so sick that some times it's hard or me to get out of the bed ever day at least one to two times a week. i can't see good. my eye sight gets really blurry. i also have what you call adie's syndrome. which thst mskes my head hurt also. i ask the dr. and he says that's not what causes my cluster head aches, i have tried every kind of medicine that i know that might help and nothing does. i hate yhe way i feel all the time. i know how everyone out there feel that sufferes with this. my neck starts to hurt so bad that it feels as though it's breaking into. if any body can help with some thing that might help please write me. if i miss spell words i hope that you can still read this message. i'am now just learning to type so it kind of hard but i still try real hard.. thanks jackie!!!1
HI,
THANK GOODNESS !!!!, finally I realise what it is that is killing me every night. I had a severe car accident in 1995 and since then (well actually just after then) I have had these devils in my head. I have seen every doctor under the sun and they all say it from the trauma of the accident and I should just keep taking advil or paracetamol to ease the pain. But trying to tell people what the PAIN is really like is so difficult, everyone seems to "know what it's like" to have a headache. Ohh how wrong they can be!!!!
Anyway, I had a stroke of luck and the doctor who was about to do intrusive surgery on my head (following lots of CT's & MRI's) left the country suddenly, and in desperation, I went to see a neurologist..... Finally, someone listened, someone KNEW, someone diagnosed my condition, and someone pointed me to this site to see if I REALLY had the devil in my head.
I mainly get the devil in the spring time although it usually goes all year (with less frequency)and I too have all the symptoms of all of you out there. Right now my wife is looking over other sites to "check out" other sufferers and she is as amazed as I am at the number of sufferers with the same symptoms, the same hell, the same agonising turmoil.
I really hope, and feel that this is a new turning point in what has become the worst torture anyone can suffer, and I am so pleased that I can read from other sufferers....To know that I am not alone is in itself a good feeling.
On another point though, as I said before, I have never known the true nature of the problem. I always thought it was from my accident (very bad head injury)and yet I read about all the drugs, remidies, reliefs and ways of getting over the devil, yet over the years, I have always used the same trick. As soon as I feel it coming (we all know it comes quick) I go off to a cold dark place, take three paracetamol, drink VERY cold coke (keep it in you mouth on the same side as the devil) and smoke at least four cigarettes. I usually have to sit up, with my feet flat on the floor (doesn't last long though) and breath...very fast. I imagine after reading about the oxygen, the breathing, or more to the point hyperventilating, is the answer.
I will continue to read this message board, and look in desperation for an answer to the agonising questions we all say when we are having an attack (usually OHHHH GOD, OHHHH GOD, OHHHH F#@K).
Thank you for your support, your experience, your understanding.
Kindest regards and deepest sypathy to you all, and wishing you all a restfull sleep.
Peter Easton
Bahrain
This site represents everything positive regarding the internet. I am extremely glad to see the free and uncencored exchange of related information located in a clearly labeled website: "Cluster headaches"
I hope that more people will see and imitate this format for information exchange.
As far as my personal experience with cluster headaches, I've found that a cold, wet cloth placed over the afflicted eye and facial region; lying in a dark, quiet room; and concentrating (sometimes VERY difficult)on something other than the pain, seems to alleviate much of the debilitating aspects of an attack.
Marijuana does not seem to lessen the attack, at least in my case, and may in fact trigger an attack when they are "in season".
My best wishes for all those afflicted, and those who are troubled by afflicted loved ones.
We are producing a documentary about headaches and would be pleased to hear from anyone who has video tapes take during a headache attack.
On 5 Feburary 1999 www.babywhoopie.com (Linn w Mosley sr, Harrisburg, PA posted a request for people willing to be filmed during an attack. I have had no luck emailing back to find out if they succeeded with this project and would be grateful to hear back either from Linn or anyone else who can help.
Many thanks
Anne MacGregor
16 years of cluster attacks, have never met anyone with the true cluster symtoms, of course everyone claims to know someone who does and they describe there symtoms which are not actually clusters! thanks for the site.
My saga started in Oct 1996 when I was teaching high school in southern Maryland and was 33 years old. My sets occur approximately 18 months appart. My GP diagnosed me imediately and put me on Prednisone. That got me through my first set but made me jittery as hell. Now I use Imitrex to knock it out, Prednisone to stop the set, and Diazepam (valium) to calm me (and for my poor wife) down. In between (usually 18 months) I use Ultram for my 'other' headaches which appear to b related to TMJ.
Hi,I am new here and think it's a great site. THANK YOU! I have suffered from migraines for 16 years and for the last three years they have been cluster headaches in the spring(3-4 daily for 6-8 weeks)slowing to 3-4 weekly after about 10 weeks. I guess that would put me in the chronic category.Just this week my neurologist(3rd one)has said I believe you suffer from cluster headaches not migraines!Maybe now i'll find better and faster acting meds Thanks again for this wonderful site. Has helped me!
I've been a cluster headache victim for over 30 years. I am currently experiencing a medical situation which I feel may be related. I will attempt to post a message on the message board, and welcome any comments/suggestions. Thanks!
another thing just came to mind,sorry i almost forgot the most tip i can offer.PUT AN ICE PACK ON THE EYE THAT GETS UNBEARABLY PAINFULL.it is the only thing that helps with the paralizing pain.thanks will.
i am 23 i've been tortured since i was 16.they started slow but now i get about two a day.i take vicodin now but my dr.s starting to give me a hard time with prescribing it.i tried every med for "headaches"(it's really like a sledge hammer slamming you in the eye for a couple hours)and non have really worked for long anyway.if anyone knows where i can get meds on the web e-mail me.thanks will
I'am a sufferer from clusterheadache over 20 years now.
I'am 47 years old and not working anymore.
My med is isoptin sr 240 mg verapamill.
If it is very heavy then a use naramig.
It is a new med containing narastriptan.
The side-effect of narastriptan is the same as imigran but a little bit longer but less tens.
Hi Sufferers I am new at this game and I don't like the way it is played I have been suffering for 5 weeks (sometimes it seems like 5 years) will it ever quit??? I am glad I found this site Thanks to who ever started it DON
Hi Clusterheads.
My name is Dylan T. Kenny. I am 25 years old. I am a migrainure and I suppose now a cluster headache sufferer...
I've had the migraines for about 17 years now. I've been on disability for about 2 years now, with the help of the Medicaid and the advice of the doctors and thier stingy RX's I am geting the migraines under control...
But now the Clusters, which I have never really had or minded up until now are getting worse...my neurologist says that what these daily wake up with them and suffer so bad that I cant think properly during the day and can't get off to sleep, and when I do finnally get off to sleep I prefer to sleep for 20+ hours at a time headaches are. Clusters. Hmm. I've been on nearly every med for migraines and headache known to man, except for these:
Imitrex: I used to have heart and fluctuating blood pressure problems so I have turned this one down, big time,
I have heard and read too much about people with my sort of problems dropping dead with this stuff...and it's not said to be good for classic migraine...I dont know how it would affect cluster but I dont think It would be too effective...
Lithium: again this is somthing I have stayed away from for a couple of reasons. One is social. If my friends heard I started taking Lithium I think they would run for the hills. They already expect me to go clock tower crazy if you know what I mean...another is I have never heard of it being prescribed for headache???!!! That's crazy talk if you ask me...IE isnt lithium supposed to be for schizophrenia? This isnt the Dark Ages anymore people...stand up to your doctors...demand results...they are people too...make them listen and dont take any back talk...if this were any other bussiness the customer is SUPPOSED to always be right!!!!
Oxygen!: Hmm. I've heard alot of good stuff about this here..and maybe it is the "magic" answer. If clusters are just your brain starving for oxygen then give it to it...poor brain!!! And all you people who are oxy dependant and going on vacation. OXY IS A MED for you. Demand to be treated as such. But, if you go to California, go to an Oxygen Bar, and it's also a recrational drug like alchohol or caffine. You should be able to get it quite easily...
Perwhatis?: Hmm. This sounds REALLY dangerous. If (!I!) Mr. Perscription Drug Man am worried about taking Imitrex and one dose killing me, and you are taking 6-10 shots plus a bunch of this...then yes, it prolly can kill you...even too much WATER can kill you...but it's LD-50 is pretty high...look up LD-50 on it on the net...
Anyhoo. Some info on a couple of other drugs:
STADOL!!!!: Whee. This is good stuff. Too Good. It's what they use to dope up mothers giving birth. If you go into the emergency room with a nausea style migraine or a really bad cluster ask for a Phenegren/Stadol combo shot. It's the only thing EVER to hit me and cause instant relief. It's addictive though as it's basically just synthetic morphine.
DOCTORS DO NOT LIKE THIS. PERIOD. They wont perscribe it if they absolutely dont have to. And they keep very regular tabs on it. The Pharmacy is instructed to call the doctor and put YOU on a list on possible abusers if you go for more than 5 refills in less than 6 months...that's less than one refill a month!!! If you want this get your perscription filled at PlanetRX...it's expensive but better in the long run...
Ergotamine: Never tried it, but researched it Fairly deeply. I don't know if you know this, but it's basically analouge of LSD. And LSD helps headaches. at least mine. But dont tell anyone I told you that. Do your own research.
Assume I'm lying. Ask your Doctor.
On Disability. I've been on this for about 2 years. It depends on the State. I dont know about just Clusters but probably not. If you have Migraines, and they are severe enough maybe, if you are lucky, yes. It depends on ALOT of factors and an equal amount of paperwork. You go down to the local Social Security/Welfare office and fill out some papers. You wait six months or so. You get denied. You then get a chance to appeal to a higher power. Do some more research, maybe find some more problems that you thought were too little and overlooked last time, the littlest things can be the most important. Get denied again. Do all this once more, but even more in depth and with ethier a real lawyer if you think you need it or with someone with EXPERIANCE doing this sort of thing. This is very important.
YOU DONT HAVE TO HAVE A LAWYER. You can represent your own case before the judge, but you are supposed to be disabled right? So if you have a representive that knows you well and dosent want money, and has maybe had a little experiance in this sort of thing then they can help. Then the Judge will say yay or nay. It's all up to him. If he says yeah then you get a back check for all that time you spent waiting...and it could be big, if you choose to get a lawyer from the state he gets paid outta that. More on this later if people want...just email me...
Hmm oxygen eh...
Somthing has always been telling me that opening up an oxygen bar here would go over QUITE well, and this could be the reason to do it. Have a doctor on hand, but not a clinical setting. Somthing in between a entertainment and a clinic...there is a place in town that has a resort licence that could do this quite easily, as well as an oxygen place right down the street...I'll keep you people informed...
Well, nice to meet you all...and keep hope alive, as long
as you hurt that the way you know your alive...
DTK
Dylan T. Kenny
Thank Goodness, I have someone to talk to about my headaches, I haven't been married very long, and my husband
doesn't know the pain I have with these God awfull things.
I have tried to explain, but now I will tell him about this
wonderful site, so he can log on and find out how I really feel during one of my episodes. I have just been diagnosed
with these awful things, even though I have had them for years. Anyway, I want to thank you for just having this site available.
I wonder if anyone could answer some questions? I have tried surgery 2 times here in Norway, but both failed. In desperation I have sometimes(3) taken a double dose of Prednisone(160 mg), and that helps. Is that dangerous? I also use a lot of Lithium, and use about 6-10 injections of Imitrex a day. Can I actually die from an overdose of Prednisone, or any of the other meds. I don`t want to die, but as I said, in desperation I use what I feel is needed to ease the pain. And Prednisone helps. At least until now.
I have had cluster headaches for 26 yeare and the only medication my doctors have given me is fiorinal and that doesnt help now or in the past. whats the newest meds out their for me
I'm 33 years old and thaught I was alone or crazy. Thank god for this site. Jana
yo-i forgot to put my email in.anyways i smoke mad weed and cigs and im episodic for ten years now im on 360milligrams of viraoimil.i know that maryjauna produces sarotonin.can anyone say combustubles are bad for my clusters? can anyone tell me if smoking weed is ok with verapimil?sometimes my heart feels like its goin to stop,but whos got the knowledge about clusters,weed,and virapimil?i sure would like to find out some imformation.i asked dr.greg but he didnt write me back...
Happening upon this website was just an incredible stroke of good fortune. My last battle with these demon headaches had been in 98. At the time, I was able to find some good info on the net, but nothing like this.
I began suffering with clusters in 1968 (no doctor had even the slightest clue!), followed by an 18 year remission. They came back with a vengeance in 1986, and return sporadically. Sometimes they will skip a year; sometimes there will be several episodes in the course of a year. I’m in my third week of the current episode- three to eight headaches each night.
I have seen several doctors, most of them clueless. Even the Neurologist I saw at the Mayo Clinic was surprisingly unenlightened as to CH. (I have sent him a link)!
In the past, I had been given enough prednisone to kill a buffalo (as much as 160mg daily). The relief was unreliable, and the side effects were horrendous. Lithium has worked out fairly well, but I seem to have broken through it, with 3-8 headaches per night this week. Oxygen, however, seems to evaporate the headaches after about 5-6 minutes of use. (It's all that's kept me from blowing my brains out!)
In this site, I have read of a few treatments that I had not heard about until now, such as Stadol Nasal Spray, and I am anxious to try them. I really appreciate the feedback from all of you, and consider it a valuable tool in defeating this insidious condition.
The cluster headache sufferer indeed has a solitary existence. No one but another sufferer can understand the unspeakable pain. Only another sufferer understands how totally demoralizing it is to be waiting to fall asleep knowing that you will soon be awake, and in total agony.
It is nice to know that you are all here, and I wish you all the best……pain-free!
i have had headaches for about 15 - 20 yrs. i have suffered and tolerated them for 99% of that time. i only get them every 14 mos. and they last for about 4-6 wks. i have been reading some of the messages on the board and i'm amazed that there are so many with the same problem, cause when i went to the dr.'s, he made me feel like a kook. (one of the reasons i tolerate them, don't want to go back to the dr. for medications). i'm glad i found this place.
After reading your comments on the noticeboard at www.clusterheadaches.com, you are probably the best situated to assist my search for the supply of medical oxygen. My name is steve (crollajv@aol.com), and have suffered from chronic cluster headaches for 18 years.. I am oxygen dependant, which becomes a problem as i am planning a family holiday to San Francisco between the 28th of June and 11th July. I would very much appreciate if you could reply to this email with information regards to me aquiring medical oxygen during my stay. There are plenty of places i can aquire oxygen here in england, but have found no facility for me to get easy access to medical oxygen within the USA.
Any suggestions will be appreciated.....
im eposodic im on 360mligrms verapimil.i smoke mad weed.the best money can buy.whether im in an episode or not.i also smoke cigs.iv seen and talked to atleaast 20 different neuroligists sp? they all tell me different shit.1 says combustables are awful to cluster headaches,another dr. says "jeremy,i wish i could say if you just didnt do this or just didnt do that,you wouldnt get a headache,but the truth is you just have to live your life like you like it.do whatever-"any body got anything to say about smokin mad amounts of high grade maryjuana along with verapimil and an episode?how about outside an episode?and dont give me no guilt or etical bullshit cuz iv already trancended that baby.
It's a relief to have found this site. I hope to get to know the site well and hopefully speak with some of you soon
Robbie
I recall my first CH attacks starting when I was in high school, I am now 48 yrs old. The cycles have been eposodic for all that time until, recently. Since March, 2000, my attacks have come on just about daily, at least 2 attacks a day. I have only had one or two pain free days at a time since they began again. I have tried, Prednizone, Orudis and Verapemil, but nothing has seemed to break this cycle. I have had Demerol injection and Soma compound w/codeine tabs for pain management and was told by my neurologist that if the Verapemil does not work, we will try oxygen therapy next, it's supposed to stop the headaches within about 20 minutes. Has anyone tried oxygen therapy and how successful was it. My ultimate hope is that I find some medication that will keep the cycles from beginning in the first place yet not leave me "doped up", so I can function, at home and at work. The problem I have now is that when an attack comes on, the pain is too intense to function, but if I take my pain medication then I am too impaired to work. If my headaches have in fact switched from eposodic to chronic, all I can see in my future is filing for medical disability. Has anyone else with CHs tried to file for disability? What kind of problems arose, especially with Social Security. Do chronic CHs even qualify as a disability under S.S. guidelines? Hopefully I will not have to resort to filing for disability, but just trying to get some input on the dificulties I might run in to if that is my last resort. Can anyone out there give me any insight? I would welcome emails from any sufferers that have had to file for disability and their success or failure. Another question I have is, how difficult is it to have your treating physician "disable" you, so you can file with S.S.?
Thanks for your responses in advance and here's hoping all the sufferers out there have many pain free days in the future.
Thank you,
Ray Parker
I have had cluster headaches since 1966. Twice a year at first, then twice a year every two years. The duration is 1 to 4 hours per headache which happened 2 to 4 times a day. The whole time frame would go for about 6 weeks or 12 weeks per year. My doctor prescribed Stadol Nasal Spray. I have found that a cold can of coca cola on the forehead will help and also heavy duty massaging of the forehead while the pain persists also seems to help relieve the pain. I have all the classic symptoms, as did my Father & also as does my brother. If it was not for Stadol Nasal spray, I would probably have gone insane by now. The thing you have to remember is put your trust in the Lord God and then beat the crap out of the devil. It is hard, but we will win.
Hi, I've had Clusters since I was 22 yrs old, now at age 40 I'm still with them. This site has been very interesting, only knowing it was here as of tonight. What I would like to find out, do Clusters ever end! Do they end as they start?
Im a 35 year old man that has sufferd with face pain for 10 years.
I started the damn things in 1983. I had no idea what they were and neither did the Doctors at first. I wanted to put my head through a wall. I don't think I have any enemies, but if I do, I wouldn't wish these upon them. They ceased after about 10 years as quickly as they came. Seven years later they have returned with a vengence. My new bride is from another country and has never heard of or seen such an ailment. She thinks they were brought back due to stress from the marriage and changing jobs. That may be, but she is beside herself thinking it is her fault. I am not writing this so much for myself as I am for her. She thinks for my benefit it would be better if she left to live in her former country. That thought alone makes my temple throb. I am having a difficult time convincing her "it is not your fault". Boy, was I in for a sticker shock. The previous med's taken were ergostat tabs. sublinqual. they sort of worked. My Neurologist once rx'd Staydol but I hated the stoned feeling and the bottle evaporated after one useage. Now with their return I go to the doctor and he rx's Imitrex. Wow! I happy for a new drug treatment the might give a little comfort. I went to the RX to find out the dosage is 9 pills @ $160.00!!!!! With one HA per day that is roughly $600.00 a month. Can't do it. I'm tempted to take that $600.00 and fly to Mexico and pick up something less expensive. Thanks for letting me vent. I'm free today, but the thought of tonight doesn't leave my mind.
tim
I'm fifty years old and have been screaming my head off since I was twenty three.
I never met anybody these past twenty seven years who has had a cluster or even a Doctor who knew what it is really about.
Its so nice to find this place. I thought I was alone.
Great site, and very helpful. I am new to this, and have not yet had a diagnosis. About 2 months ago, I started having pains on one side of my head, with pains behind my eye and down the side of my face. I noticed that one of my nostrils would block, and it seemed to occur either 60-90 minutes after lunch or around 1:30 in the morning while I was sleeping. Terrible pain ... some relief with ibuprofen and a decongestant, and appying steady pressure to my brow above the eye (for some reason, seemed to open the nostril). Mainly, just wait for it to pass after an hour or so.
I just got back from a trip to the West Coast. I had a mild bout before leaving but have not had one since. This is the 4th day. I wonder if there is something to the theory of cicadian rythyms being disrupted?
Wonderful site, testemonials almost brought tears to my eyes. Iv'e come to the conclusion that I'm one of the lucky ones. Longest period of remission was about 6yrs. Currently going two to three years before onset of next attack, lasting 2-4 weeks. Migranol spray (ergotomine) has been working well for me until last night, going to talk to my doc today about an alternative therapy. Current medication has kept the attacks down to one a day and has aborted them within about 30 min of administration. I should mention that I have suffered with this condition since I was 18yrs of age, I am now 43 and only sought medical treatment about 6yrs ago. My G.P.originaly prescribed tylonal 3's, no help. The Migranol was manna from heaven but it's affect seems to be wanning. This is my second time with this medication. I'll discuss possible treatments I found on this site with my G.P. In conclusion I would like to say thanx to the people who designed this site, the information available and to those people who have participated in it. The very best to you all!
I am glad to find your site. Most do not understand the dance. I have been a clusterhead since 1976 at age 19 and now I am 45. I have taken every drug you can come up with. The predisone makes me look like a pumpkin but that another web site and the Imitrex Injections is the only thing that works. This cycle started in Sept 99 and still is going strong. Four to six a day, I am so tired, I just want to sleep but I am so scared to close my eyes. Sleep brings the nail out, thats my name for my dance. I missed so much work I would fire me but my company really has been good to me. I really want to thank you for your site and all of the great information. We are a special group and we will make it through. Glenn
For the last seven years I have been living a life of hell, I have tried so many meds., 20 doctors, including 6 neurologists, nothing seems to be working. I am so greatful to know that I am not alone in this struggle. I just started acupuncture not sure if this is just another dead end. Just knowning someone can justify how I feel is a beginning.
I broke down in tears when I fond this site, to read of the
Dance , that I do is a dance that stays popular with some
people for years. How lucky we are, NOT. The sad thing is
I don't seem to have any dance parters when Im in the
(Dance of the Beast),kind of a solo thing , I guess.
Hopefully this hit dropps of the charts for awhile.
I need some rest...until then ..rock on....
Hi Clusterheads. I feel your pain generally and probably will specifically tonight. I'm lucky - the beast comes infrequently for me once every 2-3 years but stays for 2-3 months. My doctor has prescribed Plendil as a preventative and it worked well last bout, less so this time. Last night a headache came on suddenly after eating a peanut bar. Alchohol definitely kicks it in. Good luck to all.
My life in living hell began two years ago when I first began getting cluster headaches. Surely, I thought, I must be having a stroke. I actualy went to six doctors before a good old GP asked if my eye water. I wanted to rejoice just at finding what this was. Now, if only they would stop!
I have suffered with the devil for over twenty years. I have been on pretty much every medication listed on this web site. Lately my headaches have become much worse than normal, I am having about 7 attacks a night, leaving me little sleep. This current session has been going on since mid March. I agree with most, nobody understands the type of pain we go through, it is very hard to describe a hot nail in your eye, a tooth ache and sweating all at the same time. Man has come along way in the last century, but isn't it amazing that we have no cure or no method of treating or managing the pain we suffer from these dreaded headaches.
My husband suffers cluster headaches for the past 15 years. Went for a period of 5 years with none. They have now started up again. Dr. prescribed Lithium and Stadol NS nasal spray. nyone familiar with this drug? Thanks
I´m five weeks into my fifth periode of Cluster. It started for sure in 1993, four years later I got the right awful diagnosis. So far the attacks and the lenght of the periods gets worse and worse. Most of the time I have these really bad shadows between the attacks often supplied with other ”round” headaches. Imitrex helps me through the worst attacks. Oxygen…I don´t know, maybe they handle some of the minor attacks. This time I also tried Prednison, but there was absolutely no effect. And Verapamil doesn´t work on me either.
I´m now 43 years old and a father of two small lovely girls, who just waits for their father to play with them again. Living in Denmark with a population of only 5 million people it´s really great to consult this worldwide site. No other people know what it´s really like.
have been suffering episodically for 17 years and chonically for 6. I really appreciate this site.
Hi,
I've had them for 15 years and have had some horrifying treatments in that time - ketamine etc. This year the devil has decided to try a new dance, I got over my annual session in March and had the usual euphoria of relief only to start a new cluster 2 weeks later!!!!!! It has moved from left side to right but apart from that its the same old dance. God help me.
I have had Cluster Headaches for ten years now. I think I have tried every med. known. Nothing so far has worked for me. I do have Demerol for the pain, but can't take that everyday. I don't think the doctors understand what it's like to have Clusters.(Most of them anyway) I don't know what to do about them anymore, but just try to live with them.
I have just been diagnosed with cluster headaches after having symptoms for years and not knowing what was wrong with me. I am relieved to find this web site.
For years I have called my headaches 'the hot wires' as I would get pain shooting up the back of my neck always on one side and over the top of my head. My eye would always water and I had to 'hold' my head and apply pressure to my eye. I would try to explain this to different doctors and was sent to an optician at one stage to have my eyes checked. I was scared every time I was having an attack as I didn't know what was happening to me. Thanks to an understanding doctor who listened to me today I now know what I have. I will keep in touch with all of you.
After 10 years of suffering CH I am happy to have found this site. Thanks for being there. I've had no relief from the medical profession outside of being diagnosed with Cluster Headaches and being prescribed Duradrin which is absolutely worthless. I have been in remission for 1 1/2 years until two weeks ago. During that period I quit smoking after 43 years of it and stayed in remission for the 9 months without smokes. Fell off the wagon a month ago and back to the clusters. In the early stages, one drink of alcohol would kick them off. Two weeks later they come on their own, no alcohol needed. Just experienced 8 hours of CH misery on a flight from Frankfurt to Dallas cramped up in a window seat, unable to move and no medication. Time to push the HMO for a neurologist referral and hopefully some relief. Thus far the only thing I have found to relieve the pain is running on a tread mill to get my heart rate up. I am thrilled with all of the information offered on these pages. Everyone, please keep sharing your experiences.
Hi,
I am 29 yrs. old, and began suffering from clusters when i was 17. My last cyle ended the 3rd week of march. My wife watched me for the first time ever, walk through what i like to call "The Wilderness of Hell's Torture". She was 8 months pregnant.
On the 28th, my son turns 1 yr old. i hope he never has to witness what his mother has. But I know that is a dream with little, if any, possibility of coming true.
So my cycle is late. I am praying to every God I have ever heard of that it is skipping me this year. And the following year, etc., etc., etc.!
This too, though, is a fantasy, one i know that we all share.
I will tell a secret to all. I have had my life physically placed in danger, and yet, i have never known the fear that i feel now!
Sadly, it is almost a fear of being alive. No, I do not wish to die, nor am i contemplating taking my own life.
It is only that i know that, " only the living can suffer this cruel torture. "
I live in fear of the next attack. I am afraid, not of the fact that i will have one, but of not knowing when, where, can THEY help me this time, who will see it, will it be longer, shorter, more painful, less painful (cross your fingers),more frequent, less frequent. half of the nightmare is the lack of knowing?
you all know. you all feel my pain just as i feel yours.
as ironic as this sounds, Thank God for you and your curse! Because at this point, you are the only one who truly understand.
we are the only ones who can EMPATHIZE with each other. i keep you all in my prayers.
i weep when i read what we go through, hoping no one else will ever become a member of our exclusive club.
Even when i suffer from an attack, i feel more sorry for those that do not suffer personally, but do so through a loved one. Your cross must be great.
PLEASE REMEMBER CROSS BEARERS: YOU ARE OUR ONLY HOPE AND STRENGHT! WE LOVE YOU LIKE NO OTHER. THANK YOU FOR BEING OUR LIFE-LINE! GOD BLESS YOU A THOUSAND TIMES OVER FOR WHAT YOU ENDURE, KNOWING ALL YOU CAN TO IS.....CARE!
Very grateful to discover a superb site. May our dreams come true.
Hi all. sorry no dances please.I thought you all might like to know ,this is my first bout of headaches in 15 yrs ,,I just made an appt with the same treatment that worked for me 15 yrs. ago,,,,acupuncture,,,it took 5 sessions but they disappeared for 15 yrs with no meds of any kind,,I just thought some of you might want to try it,,,,good luck,,,P.S. it really doesnt hurt
What great web site , ive been dancing with the devil now for 20 years ….oh what fun ..you think , LOL.
To everyone out there that suffers as we do …I feel I can truly say that not very many folks know what true pain is . Cluster sufferer’s ,I do believe have souls made of the best steal and the will to over come the worst of pain .
I don’t know what to say Ive been on almost all meds and the one that works for me is Imetrex , but all Glaxowelcome wants is my cash , man what a price .
So I don’t know what else to add, everyone here has said it all , it makes me cry to read all the posts because Ive been there …
Iam in a set now so , God help my Doctor and Prudential , ill be all over them ….ROFL
Take care, its all good or it will be folks , we’ve done our hell on earth ….
Mike
Howdy, Y'all! I'm glad I found this web site! I've been suffering from cluster headaches for about 12-13 years. At this time I'm currently in a cycle. As a matter of fact I just had one a short time ago and decided to go on the web to search for information about clusters when I came across this web site. Needles to say, it took me several minutes before I could look at the screen! I hope this little spot in Cyber Space will become an important resource for me to learn how to live with "The Demon". I'm mostly interested in the results folks have had with different medications and treatments.
I am in another cycle, they usually come in the Spring and last for 5 or 6 months. I have tried all sorts of meds, Verapamil, Imitrex etc Zomig works best for the short term but it is still there...I tried a vitamin therapy once a few years back..I think it was B vitamins in mass quanitity has anyone tried that or have any information on it. I want to try it again. Thanks Leslie
I’m a sufferer as you are and have the cluster for almost 20 years.
I’m not a doctor and the advise I’ll give here is “just” a personal experience.
To make a very long story short, just recently I contacted a neurologist, had a meeting and she gave me Verapamil. Since I take 3 times a day 40mg of this harmless medicament I do not have any attacks at all!
No attack, not even a single little pain, even though I am in a strong cluster phase.
Of cause I don’t know if this will work out for you, but give yourself a try!
I would appreciate if someone could report such a success story to me after you tried it.
All the best, Uli
Gone since 2 years now. Cured forever i hope.
I have suffered from cluster headache for more than 6 years
4 to 6 attacks per day for approximately 6 month a year
My Neurologist was treating me with ISOPTIN SR 120 MG 2/day and
CARBOLITH150 MG 3/day.
This combination was helping up to 50% reducing the number of attacks
and their severity. But still a 50% attack of cluster is still very painful,
And I still had some bad ones from time to time.
THE CURE : (My case)
I saw a new General Practitioner, He vas concerned with my high blood pressure
( average 190 / 100 rising to 225 / 120 )
He referred me to the Hotel Dieu Hospital in Montreal Dept of radiology
where a multiple tests for kidney problems were performed.
My problem was first diagnosed using Doppler ultrasound than confirm
with MRI (magnetic resonance) and a scan in nuclear medicine.
They performed an angiography and angioplasty, inserting a STENT in
the artery between the aorta and the kidney.
My blood pressure dropped to acceptable range and guess what ?
My headaches were gone (for more than 2 years now).
All the previous tests were then repeated excluding the angiography
I was very lucky to be included in a research project on diagnostic of kidney problems.
All of these tests are not usually required.
I am still careful with the food I take.
FOOD TO AVOID:
Coffee The and Chocolate : these will cause an attack 7 to 10 hours after consumption
Beer, nuts, food containing MSG These will or can trigger an attack 45 to 90 minutes later.
If you insist on having a beer, drink imported beer only since the large Canadian and US brewery
use sodium trisulphate to sterilised their bottles and this is what seems to trigger the attack.
Carbon monoxyde (driving in heavy trafic)can also cause one
I sincerely hope that my case can help some of you. Knowing how some of you suffer.
I was blessed with my first attack at age 17. I'll be 41 soon. I was episodic until last summer, when I "went chronic". My biggest irritant, besides the pain, of course,
are physicians who prescribe meds, then take for granted that everything will be "just fine"! I've been on virtually every pill, injection, inhalant, and even suppository that one can imagine. I've only been able to work a total of 2 weeks all year! I feel worthless and depressed most of the time. I'm new to the website, and I have already reaped tremendous rewards, both physically and mentally. Clusterheads lead such a solitary life. It's so nice to really be able to talk to folks about the pain without having to educate them first, doctors included! Thank you so much for a gift that's well worth receiving.
after 15 years of the devil i had a year or so vacation. its back im not sure if ill make it. i must mikey and erica blu need me.
Sufro del Cluster por mas de 14 años dejo de dolerme por 3 años y medio y
ahora regreso del otro lado de la cara........Con mi experiencia he podido
"manejarlo" mejor en esta ocasion.
Les felicito pues esta pagina es un oasis en el desierto del dolor.
I've just been told by my doctor I've got a disease called Episodic Paroxysmal Hemicrania. I don't even know how to say it..all I can say is that the pain on my right side of my head is paralizing. I'm on a drug called Indomethacin. I know nothing about it, other than it seems to be working, but makes me feel "loopy". I've been told, I must stay on this for the rest of my life. Now what?
Thank you three times over for this site.
Only fellow sufferers can know what we go through. I am 64 and have had these headaches since my mid forties. I get a cluster once a year and it can last from three to six weeks, getting one to three headaches a day, nvere lasting longer than an hour. They usually start in the Spring. I do not take any medication, but have found that if I increase my caffiene intake the severity of the attacks is lessened.
I look forward to a more leisurely stroll through these pages.
Thanks again.
I'm 42 and have been suffering from CH since I was 17. My atacks come about every year and a half to two years lasting around 2-3 weeks. Throughout the years I had doctors checking my reflexes, giving me CT scans, you name it untill about 5 years ago my Dr. said that I have CH. As you all know that when you tell someone that you have one they look at you funny because they think it's just a headache. I've had broken bones, ruptured an Achillies tendon, surgery, but nothing comes close to a CH. Thank you for this web site!
I have been a cluster sufferer for 18 years...but last year I was taking Paxil and my headaches didnt come on..I could feel them in there just sitting waiting to come a live but they didnt..I dont know if the Paxil helped or not I asking around ...I wasnt taking it this year and my headaches have started I was woke up this morning at 0430 with a bad one...the reading I did about Paxil says something about serotonin regulating which I think I read years ago makes us have headaches..Please ask your doctors if this medicine could have helped to keep the headaches away...I'm trying to find out more too....thanks Pam
I have entered the guest list again it appears that my last ISP wont let me on line.
This is a great site for people who suffer from this. I have had these headaches for several years now, and come to this site very often. It has provided me with invaluable information about medications, and as a result, I am now on imitrex, and finding much success with it. Thank you for this site. It is comforting to know that there are other people out there that understand.
Have just come across this site. I am 43 yrs and have been suffering for the past 22 yrs & it is great to see I am not alone. I am 2 weeks into a cycle. Usually I get a cycle about every 2 yrs but this is the first for 3 yrs and the longest I have been free. This time though I have been getting the headaches about 4-5 times throughout the day & night. Normally I would only get them at night & occasionally during the day. My current GP has given me Ergodryl but this doesnt seem to be working. I have also started accupuncture today to try & help with the sore neck I always get. Going thru the messages I saw something about blue cheese so I tried it. It doesnt get rid of the headache but it certainly helps lessen the pain. I have only tried it twice but both times it helped. Anyway its great to finally have someone out there who understands what it is all about.
Well, I'm about 2 months into the current cycle. This is the second I've had. The first was 6 years ago, and I didn't know what it was, then. I was sure glad when it went away...didn't realize that it would come back. Oh well. I get the dubious pleasure of also getting migraines. I'd rather have them than CH's, though...they only strike once or twice a month. I'm very pleased to have found this web site. I never was able to describe what it feels like to others. I'm sure all of you have heard this at one time or another: "If you just have a headache, take some aspirin." HA! Thanks for being here. It's good to share in the experiences of others who are going through the same thing.
Have a good one all!
Hi,My name is Sarah. No, I'm not a CH sufferer, but my father is.He has been living the past how many years with them. Growing up for me and my two younger brothers was not easy.(Including my mother) We lived every day in fear of knowing that as soon as another one hit that we were going to be punished in more ways than one. My dad would always take his pain and aggression out on his loved ones,the ones who really cared but just were to afraid to show it. Yea sure,we may have called him an asshole and every other name under the sun,but now going on 21, I see why he was that way. My dad still suffers on a daily basis with his cluster headaches.He has tried all the medication in the book and it seems as if there is nothing to help relieve the unbearable pain. It hurts all of us to see him suffer the way he does but we know there is nothing that we can say or do to take them away. My dad was very greatful to see that he is not the only one out there who is suffering from CH.(Not in a suffering way) Speaking for myself, my dad may have treated me the way he did in the past few years,but I love him with all my heart! If there are any other kids out there that have a parent or parents who suffer, stay positive. To all you CH sufferers, I truely feel for ya's and pray that one day you all will be headache free!!!! lol ,Sarah
Hi, my name is Thom and I have been suffering from migraines since high school. Doctors have told me these are from contact sports like Hockey and Football, both of which I played avidly in my youth. After fighting with these migrains through college and taking countless drugs to counter them a close friend gave me samples of an "all-natural" diet supplement which I immediately took and consequently noticed almost immediate results from. All I know is, I called him the next day a bought a months supply of and have since been completely free of headaches for about four months now. This line of supplements was also recommended by my step-sister, an herbotoligist (I not sure exactly what her expertise is) and has also helped many other problems I have from years of physical abuse.
I know this may sound like an ad but, I am sincere and I know only one thing. And, it is that this stuff has really helped me, as well as many others.
Thom Flowers, Dallas, Texas
Suffer from random migraines and unexplained throbing. Friend by the name of mark gillum refered me.
I am a 51 year old male suffering from CH for 13 years.They began as a 5-6 week cycle two or three times a year. In 1994 I had a cycle last for six months with a headache every day.I have been to Dr Silberstein's Headache Center at Temple-Pa. as well as Dr. Neil Raskin in San Francisco. I have been on every drug known to man from Pred.to Lithium to Neuronten with little results other than becomming a fat zombie. About a year and a half ago I tried a more natural approach. In addition to varapamil,I have been taking 2 550mg Ginger capsules three times a day and 1 100mg vitamin B-2 tablet three times a day. I have not had cluster headache for a year now. Ps. during the first six months I tried not taking the supplements several times and the headaches returned. Go figure! All I know is that it works for me with out all of the drug reactions that are nearly as bad as the pain. Has anyone else heard of this? I can't begin to tell you all what it is like to have my life back. Good luck to all.
I am the wife of a chronic cluster headache sufferer, my husband has had these for going on 11 years now and nothing seems to work he has tried oxegen, depakote and mant others I can't even begin to recall them all right now he is using verapamil and lidocane drops but they don't work every time either, he is now experiencing nose bleeds from the drops. I get really scared sometimes that he will hurt himself just to stop the pain. he has mever gone more than one week without them, a break we really enjoyed but wish it could have lasted forever. anyway It's my first time here and it's nice to know there are others out there to talk to but not there they're suffering like us. hang in there.
cindy
Very glad to find this site. I've been a sufferer with CH for about 7 years now. The IMITREX injection has been a God-send for me. About 3 min after injecting almost all the pain is gone with only a little dizziness, bug eye, flush face and vain rush left behind (gota' keep the humor). My cycles are on about an 18 month cue. Guess I'm one of the lucky ones after reading some of your letters. Hopefully this cycle is almost over. I just celebrated my 39th B-day yesterday the 2nd. Like most of you I've had too many tests and tried too many different med's. From the sinus, ear, nose & throat, eye, bone crackers, brain scans and enough
x-ray to make Hiroshima look like a Poloroid flash.... I too am praying for the day when we can all find a fix for our condition. Until then, take care of yourselves. Aloha
I am so glad to find this site. I have suffered from CH since the age of 17, I'm now 39. I have been misdiagnosed more then I care to count, I'm sure everyone on this site can relate to that. I'm just starting another string (first demon hit at 4:00 am Monday) and I have to break in a new Physician. This is so frustrating, too many doctors still want to treat these like migraines even when they have my medical history in front of them. Sorry, I didn't have a good appointment this AM. I have received alot of good info from this site and will visit it often, it's a relief to read that I'm not alone. Up to a couple of years ago I had never met anyone with CH, I thought I was just crazy!!
LOL Lisa
Just a quicky,Ive only just found the site,and will come back later as soon as I have figured out what I want to say. I am a chronic sufferer for almost five years with attacks almost daily, four or five a day. I also have heart trouble which cuts out a terrific amount of treatments. At the moment I survive on 100% oxygen and verapamil 600mgs a day. Thanks for being there and if any one wants to talk Im here. God bless Ron
hi it was great finding this site thanks!
I just discovered this site last week and am so happy to have found it. I go into it everyday just to remind myself that I'm not alone in this cluster headache nightmare. As I read the way other cluster headache sufferers react to their headache, I was amazed how we have the same reactions. I started clusters 23 years ago. I am episodic. I have been in remission - this June will be 4 years. However, the cluster headaches still are holding me hostage. Everyday I wonder if this is the day the episode will begin again.
Yes we suffer from the beast on this side of the pond too. I have suffered from clusters for the past twenty years and they have gotten steadily worse. I finally found out about oxygen during my last attack and what a life saver it is. I noticed that drinking lots of fluid seemed to have a positive effect also but only for ten minutes at a time. Imigrin inhalers are effective 50% of time. Nothing else works. Take care. Iain
It, been 3 days since I've started on 240mg Verapamil SR and so far even though I've gotten the shadowy portentious feeling of an impending headache, they mercifully haven't materialized. The same neurologist that prescibed the Verapamil also wrote a script for home use oxygen and a venti-mask to breath it at 100%during an acute attack, but so far, the Verapamil seems to be working...........
Hello Everyone!
I too suffer from CH. They started about 20 years ago and apart from a 31/2 year recession, they occur daily with varying frequency. Rather than explain the pain that we all know too well, I would like to pass on what helps me control the pain. Let me first relate what the medical profession has suggested as a cause for CH. Some of the Docs say that CH is a Vascular condition. One where an artery cramps, restricts the blood flow to the brain which triggers the brain to send messages to open more arteries to satisfy it's need for oxygen. When all of these arteries dilate, the congestion in the area puts too much pressure on a variety of nerves, e.g. gums, nose, eye, top of the head, temple etc. Probably, most of you have been told the same thing. That is the reason they prescribe calcium channel blockers like Isoptin or Verapamil. These drugs work to relax the blood vessels. I didn't find them particularly helpful when I considered the side effects. However, they work for some people. One of the frustrating things about CH. The first time that I got any relief from the suicidal pain was one night during an attack, after pacing the floor until I was totally exhausted, I literally fell onto the couch with my neck crammed against the arm of the couch. The pain was gone. I sat up, the pain was back. I crammed my neck against the arm again and kept it there until I fell asleep. That turned out to be one of the tools I use to control the pain. I dig my fingers into my neck and prod around until I find the artery or two that stops the pain when pressure is applied. If a CH wakes me and it's severe, I douse my head, face, ear, eye, nose with very cold water to reduce the pain (3 to 5 minutes) then hold my neck while I rush for my pills. Sounds bizarre doesn't it? To close this session, I take 1 Oxazepam and 2 500mg Acetaminophen about 30 minutes before going to bed. If the beast wakes me, I hold my neck as I rush to take another dose of the pills mentioned, usually while drinking something cold. Through the day, if I feel the slightest indication of a CH, I take 2 Robaxacet. This allows me to be reasonably functional and because the pills are muscle relaxants and minor painkillers, I am more calm and able to cope. A far cry from the early insanity we all go through. I do not recommend this to anyone before consulting a Doctor. Drugs have different reactions with people and i wouldn't like to be the person that added to problems of CH. Perhaps with proper medical support, it might help somebody. I have really enjoyed the entries in this site. Good Luck.
I've had the curse for 26 years now. When can we expect
permanent relief, apart from the day we die.
It started about 5 years ago and has not stopped. I get them around Summer time and the pain starts at 4:00 PM daily and this goes on for about 8 weeks. On the KIP Scale the pain is a 5 - 8 at the onset and quickly (within days) becomes an 8 -10. Until I found SANCERT I used "pain diversion therapy" My favorite was to take a long cotton swab, put nasal decongestant and try to touch the nerve in the back of my left side sinus, My doctor taught me this when he thought this was a sinus infection (the first year) this would stop the sinus flooding. For the headache part I would wrap a large ice pack in a towel and ever so gently SMACK my forehead with it. This is when my wife took me to the hospital. From that point (second year) It was discovered by an intern that I had all the classic singes of cluster headaches. I was given a script for Sancert and the following day the attack was just a mild thumping in the front left side of my head. This was one of the happiest days I have experienced.
Regards...
Robert A. Moriarity Sr.
Just to start with a little history of my Cluster Headaches. I am now 51 years of age and I had my first attack when I was about 16. At first the cycles only lasted a few days but happened every few months, then once a year As the years have gone by the period between the cycles have stretched longer and longer, before the last cycle about 18 months ago I went 4 years without an attack. After each cycle I was hopeful that that was the end of them, but no that was not the case.
With my attacks the pain is always on the left hand side of my face and especially above the eye. My attacks start off gradually and build up to a peak for 15 minutes or so and then start to ease, the whole episode takes around 45-60 minutes.
My cycles tend to last about 6-8 weeks and although the length of time between these cycles has got longer the attacks have become more frequent in respect to the amount I had each day. Where in the past I would may be have one attack a day the last bout I was getting them 4 or 5 times a day. In most cases they would happen when I had been asleep for about one hour and I would awake with the pain, get over that one go back to bed and after one hours sleep it would start all over again, it was really a trying period for me as for more than a week or so all I was getting was about 4 hours sleep daily which consisted of only one hour spells.
Well, now some better news as I had found the the clusterheadaches.com web site and was reading everything on the web site and looking at all the messages from other sufferers. I went down to the doctors got a script for Imigran (Sumatriptan) nasal sprays 20mg, from memory about $20 each. As soon as I got an attack out came the Imigran, absolutely fantastic in 60 seconds it was in my system and the pain had gone. I continued with them at each attack with success but was getting a little concerned with the amount which I was taking as the leaflet warned about going over a certain quantity in a given time which I was exceeding. I did however find that 10mg of Imigran was also available so I tried that and it was just as successful as the 20mg. I found with the Imigran that I had to get it into my system as soon as an attack came on and if I was a little late in doing so and had gone passed a certain point then it had no effect at all on me and I just had to go through the pain.
Alright, I had found a way to manage the pain on most occasions but of course was not getting rid of the attacks. Like most people over the years I had seen lots of so called experts in many fields and tried many possible remedies, all to no avail except inhaling oxygen which did offer some relief some times. So 'what should I do next' I said to my self and set about reading more on the clusterheadaches.com web site message board. It appeared that some were having success with 'Verapamil'. Next off to the Docs again for a script for the Verapamil. This I started taking at a high dose and tapering down each day. Things started to get better for me after the first day and after 4 days I went a whole day without an attack, after 7 days the attacks had ceased, I was left with a fuzzy feeling for about a week but that was nothing compared to the Clusters.
This is my brief summary and hope it will assist somebody with their suffering along the line. This worked for me but of course that is not guaranteed for anybody else. Lets hope with the greater awareness that Cluster Headaches is getting and the research that is going on that one day we can get it under control for all sufferers.
Best Wishes
I have had cluster headaches since I was 16. Today I am age 39 and I am constantly looking for new improvements in the treatment of this headache.
I have suffered from migrained and cluster H/A since age 13. I have seen more doctors and taken more drugs than I ever dreamed imaginable. Unfortunatly the only things that seem to work without an alergic reaction are narcotics so all the doctors think I am a dope head. I am so frustrated and tired of living in pain I wonder why I bother at all any more. I have an appointment tomorrow at the Headache Clinic of Houston. They will do one of two things: help me or think I am a drug addict. Wish me luck!!!!!
I have been a migraine and cluster headache sufferer since I was 9. I am now 56 years old and not much has improved except new and more drugs with can give you rebound migraines if you get into a cluster situation. In my family, migraines are heredity. The generation of women before me had them, one of my daughter's has them and now one of my granddaughters has them. The men in the different generations seem to get different kind of seizure problems. I raised 3 kids while having migraines & worked full-time. It wasn't easy. I ended up in the hospital a lot being given more drugs, being taken off drugs. Eventually, I lost my home, job and savings and ended up bankrupt from trying to pay for all the meds. I have been disabled for 11 years and recently went back to work 20 hrs. a week. But when I get the cluster headaches, the rest of my life is put on hold, so I can just make it thru work, of course, with the help of lots of drugs. It's a vicious circle which has ruled my life. I, like many, dread the Er experience where they make you wait 2-3 hrs. dying as everyone looks on with the bright lights, the noise and no place to lay down until you finally here your name called. By then, you are about to go bilistic or are so weak you can hardly state your case. They have not come very far since I was nine and I dread to think if there will be any hope for the next generations. When is anyone in the medical field going to take this problem seriously?
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