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Below are the guestbook entries from January 2002. 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 This is a cool site talk to people who really know what you go through. Thanks It sure is comforting to know that theres a place to go late at nite to find someone to talk to.Doug <dgria@charter.net> Potter, WI USA Sunday, April 28, 2002 at 11:53:02 (EDT)
I can't believe that there are so many people out there with cluster headaches.I try to tell people how it fells but unless you have been there you don't really understand. The whole right side of my face fells useless. All I fell is numbness on that side.The pain just never seems to let up. I have learned a lot about these headaches since I have found this site.Thank you for having a site where we can see that we are not alone.
i am a 32 yr old woman and i have suffered from miagrains for about 9 yrs now i have a presription for max alt that helps to ease the pain but not fully relieve me of this head shatering feeling i get at times i pray that there will be help someday.
Hello, I have seen 8 doctors in the past two weeks and everyone is completely stumped by my drooping eye and headaches. I finally saw a neurologist the other day and he thought that I might have CH but wants to rule out anything else. I started getting bad headaces but they were manageable and a few days later my left eye started to droop. The headaches started to only be on the left side of my head behind my eye and ear and each day my eye would droop a little more. I had the headache non stop for about 3 days and it just kept getting more and more painful until I couldn't take it anymore and went to the ER. They gave me morphine and Demerol and it did not even put a dent in my headache. My MRI was negative and all blood test were fine. My headaches got better the next day but my eye is still drooping (4 days after the ER) and I get an occassional headache. Is this common? Also, how long does the eye droop for? I go to see Dr's # 9 and 10 on Monday and am concerned that they are also going to be at a loss. Nothing I have read explains how long the eye droops for and if the muscles around the eye become sore. 3 of the doctors I saw were Opthomologists and they all confirmed that there is nothing wrong with the eye itself. If anyone knows, it would be greatly appreciated. This was my first unbearable headache and if they are coming back, I want to be prepared! Thanks so much for all the great info this site has given. There is nothing like hearing the facts from the people who live it!
I am having a hard time finding a doctor in my area to treat my headaches. it seems to be my experience that narcotics work the best for me unfortuntlly they are also the hardest to get a prescription for. doctors act like you are some kind of addict, but i have tried other methods and this seems to work the best for me. I just have to find a doctor who understands what i am going through please help.thank you! Kansas City, Missouri
Thank God for this sight... I have suffered with CH since
1976. When my ch started the doctors (In Racine, Wisc.) had no name for them, but connected them with the fact that I had suffered a broken neck (c6 fracture). I received nerve blocks (shots to the neck at the base of the skull) when
ever I would suffer with a ch series. Over the next several years my headaches would only come once every 2-3 years and last approximately 4-7 days; hitting a peek only 2-3 times during each series. In 1985 my ch started coming approximatly once per year and lasting appoximately 8-10
days with a peek each night or rather early morning (my
peek period is always between 12:30-4:00am). My peaks use
to only last 30-60 minutes; now they last for several hours.
I've went as long as two years with my ch in remission. But this last year have been very, very bad. It would be easier for me to count the days that I've been pain free than the
ones I've fought the evil one.
After another visit to the er last Thursday Morning at 4am; another missed day from work, I finally found a web sight
that offered me some help other than saying the usual; "CH
is the worst headache there is; noone knows what causes them
and there's really no known cure or medication. Over the last 20+ years, different doctors have had me on many different medications, which all seems to help the minor ch for a while, but nothing has ever had any long lasting effect.
Your sight was a God send, it is the first time that I have
felt that I'm not alone... I felt bad enough when doctors
informed me that ch mostly accurs in men, than knowing noone
else personally that suffered from ch; and some doctors
not even knowing what they were; I've felt alone more than once over the years.
There are times that, had I not been a Christians, I really
and truly feel that I might have taken my own life. Over the
years I've felt that people didn't beleave that I was in as
much pain as I said, that people thought I was crazy and
that the pain would never subside.
This week I call the doctor to ask him about Imitrex (after
reading about it on your web sight), he gave me a sample of
both the Injection and Nasal Spray... Tuesday Morning at 3:30am the shot proved to be like an Angel sent down from heaven. Wednesday Morning I tried the nasal spray and even
though my ch didn't go into a power blaster, it never left.
I never thought that I would be able to give myself an injec
tion, but I had no problem when the devil attacked me.
This period started a couple weeks ago while I was visting
my Sister in Chicago - "Z" had never seen me have a ch. As
I walked, cried, prayed and slapped my head, my dear sweet
sister cried along with me, because she couldn't help me
releave the drentching pain."Z" begged to take me to the hospital, but I refused; I struggled with the evil one for a couple hours before it finally drained from me and I was able to lay down and get some much needed rest.; knowing that it would only be a matter of hours before he returned.
The above have been almost a nightly ritual for over two weeks - last week-end the evil one won and after wrestling with him for what seem like several hours, I ended up in the er where I received a shot that knocked me out for several hours while the pain drained from my very tired body.
I've used the pepper {capacin} in the nose for several years (the burning is nothing compared to the pain), but it only works for me if I get it at the very beginning of the ch and the ch isn't one of the really severe ones. The water
don't work for me - because I drink an average of 8-10
glasses of water each and every day.
As of June 1 - I will celebrate 18 years of cancer free - I
had numerous surgeries - pain and illness - nothing have
ever effected my life like ch and nothing has ever caused
me as much pain ( not even 18-hours of labor)
I will Pray for each of you and ask you to do the same for me.
Peace & Blessings
Join us at http://communities.msn.com/Rockwall
Clark
admin@DigitalFamilyAlbum.Com
Creating Digital Albums for Families & Artists
http://DigitalFamilyAlbum.com
I'm 51 years old and I've been suffering from chronic clusters for 10 years, but did not know what these incredible headaches were for 5 of those years. I would load myself up with high levels of aspirin, which helped a little for the day attacks, but did nothing for the terrible ones which came about an hour after going to bed everyday. I took so much aspirin that I would get frequent nose bleeds and extreme heartburn. Through a referral, I found a couple of neurologists in San Francisco who prescribed all the common abortive and preventive drugs (ie. verapimil, sansert, lithium, imitrex, and others I can't even remember). Most of them helped for a couple of months, but then completely stopped working. Then, about two years ago, my doctor prescribed Zomig, which helped a lot in aborting the CH's, but still didn't prevent the night headaches. About a half year later, the other neurologist had me try 10 mg/day of Norvasc, which again worked fairly well for a couple of months, but began losing some of its effectiveness, although not completely. At that point, he increased the dosage to 15 mg, but I didn't experience any improvement. Then, he added 750 mg/day of Depakote and my the intensity of my CH's have diminished considerably and I don't wake up with excruciating pain anymore. I'm happy to say that this drug "cocktail" has worked for me for over a year now. My CH's are still there, but I only occasionally need to take a Zomig and I can usually abort them with over the counter pain killers and finger massage. I just hope that this combination continues to work.
Hey, just stopping in- thanks! http://www.california-mortgage-loans.net.
It's nice to see a site dedicated to those who suffer from this debilitating illness. I guess it's true that misery really does like comfort. And for all those who suffer from migraines, you have my sincere apologies, for there truly is no greater pain that I've suffered from, at least. I've had 4, somewhat major surgeries in as many years and the post-op pain pales in comparison to the agony I suffer from with cluster headaches. I just got home from 3 days in the hospital. After 8 consecutive days and nights suffering at home, I finally had to check myself in. I was admitted immediately and during the next 3 days, I was treated with DHE 45, Immetrex and Demerol. The pain finally subsided after the third day, but returned hours after I got home. My neuroligist prescribed DHE 45, but I still can't find a pharmacy who can get it for me., let alone find a pharmacist who knows what it is. I've been able to manage the pain by taking Stadol, Migranal, Steiroids, Immetrex and Vicodin ES. As long as I stay medicated and stay down, I'm O.K. but forget about work and normal activities. What will become of us? Has anyone had measurable success at home with DHE 45? If so, I would like to hear from you. Good luck to all of you and my God bless...
Dj just wanted to tell you Hello. ive had to listen to the BAND for 16 years and still dont know how to deal with the beast.I want to say THANK YOU,up until 2yrs ago i really thought i was the only person who heard the band.im happy that i am not the only one,but sad that anybody should have to experance the horrifing pain that we go through.i was in remission for the last 2yrs,the band has been playing for the last 6wks f... i hope th.ey leave soon.Ive been getting 2 per day usally in the past 1 moderate like a6or7 on the Kscale 1 10. This cycle they all seem like 10s.I guess what i am trying to say is your site is the best thing to happen to me since chocolate ice cream,please keep up the fantastic work. i gotta go band is playing to hard to concentrate.Thanks for listening Matthew curry will send you my email address when i know it, roomates computer. P.S shhhh i hear dumb people there everywhere.....there the people who think a ch is just another headache
I am 20 years old and have been experiencing cluster ha's for a couple months, although I did not even hear of them until I went to the neurologist for migrains. Is it possible to have both types of ha's cause somedays are "good days" when there isn't much pain, then there's the days when I am screaming in pain to the point of vomiting. Because of these, I have missed a lot of work. Is there anything that is printable that I could give to my boss to at least make her understand where I am coming from so she doesn't get so upset when I can't go to work. Thank. Glad to know that I am not going crazy like I thought I was.
been in remission 4 almost 3 yrs!! but they're back!! Thank God 4 Imitrex!!!!!!!!!
Hello Everyone, Thursday, April 18, 2002
I would like to express my appreciation for all those who are participating in the ‘clusterheadaches.com’ site. I know intimately how deeply CHs root in our lives.
I have suffered from CH since a child 7-8 years old). This seems not to be the normal age group. I am 39 years old now. I still have them. I have all of the classic symptoms. I have been to many doctors for this over the years.
I have had no success until three years ago when I was referred to a Neurologist in New Orleans. This doctor finally diagnosed CH. This was a tremendous step for me. Before then I did not know what was wrong. I began some of the treatments that are discussed on ‘CH.COM’. I have found relief. This particular doctor informed me about my condition, prescribed meds, and informed me that I would indeed have to do my part in this. She insisted on a diary. I must say I was not looking forward to journalizing my episodes. When an episode would pass the last thing I wanted to do was log it in and write about it. When I failed at keeping this diary up to her standards, she warned me that I might need to seek help from another medical professional. She demanded total cooperation of me in regards to my treatment. It was not until I kept the diary up to date that I realized the importance of such documentation. I noticed my particular episode patterns and my meds were scheduled and dosed accordingly.
From that point, for the first time in my life, an episode began and I got on the treatment right away. The treatment worked. My cluster episodes historically last for up to four months or more. For the past two years I have had to suffer only single headaches infrequently. This is my signal to get on my treatment. I have just this week had two explosive attacks. I am going through the preliminaries to start my meds again. I am hoping that I will be as successful as I have in the past. We all know that some of these meds, although not narcotics, can be very harmful to our bodies. I have been trained well by my doctor and know how to appropriately deal with meds of this type. Regular blood work and check ups. I am on a three month routine for visits to my physician.
I can guess you must know how psychologically relieved I am to know that I can fight back.
PEACE Micheal...
Hi, I'm 44 and have had these damn things for over 20 years. I think one of the toughest things about them is the fact that when you try to describe them to someone, you usually get a funny look. "Cluster headaches.......what are those?" And I really love it when you get "Yeah, I get bad headaches sometimes too". They have no idea of what real pain is. Even emergency room doctors & nurses don't respect the utter urgency required to squash the pain. I guess if you don't have blood squirting out in all directions, they don't think it's considered an emergency. At least here there are intelligent people who understand. I've been looking for something like this for at least 20 years. THANK YOU!!!!!!!!!
Terry (TooTall)
hi ive had my cycle since feb 19 during feb and march i had 30 something headaches april has ben better i think my cycle is ending. ive had clusters since i was 29 years old i just turned 51 april 3ard if anyone would like to talk to me e mail me back sometime hang in there cluster headaches they do go into remission coach c
Thanks for just being here.... Been a chronic sufferer since I was 16. Noone can really understand what we are going through but each other, they try, but they can't. I'm glad I found this site and so many people who know what it's really like. :)
Thank you for this site. I am a 35 year old, divorsed guy who suffers from cluster heasaches. My first incounter with what I like to call "the fun" began three years ago when I was still married. My now ex-wife left me alone on Easter Sunday as I screamed in pain for four hours. I had to call her to make her come back to take me to the emergency room. I never felt so alone. I am now in a new round of "fun" time. Being a very devoted Christian, I have tried prayer. And because I am not completely insane, I also rely on some of the med's metioned on your site. God gives me the strength to deal with the bad days, and the med's help me to have more good days. But, I have to admit that the pain has, at times, tested my faith. The fact that someone cares enough to share the information on this site is truly a blessing. Thank you!!!
Never realized the pain that you people are in...i have a friend with these headaches.....
Mine started three days after drinking too much with some college buddies in Chapel Hill, NC - they started at work and hit - I remember being in excruciating pain - they went on for days with no relief - started taking aspirin by the bottles every week - this was in August 2001 - today, after a CAT scan and MRI, a neurologist in Atlanta got me on Paxil at 20 mg per day - it has some crazy side effects but I have not suffered since. I've been on it for 5 months now. All of you should try this - I also work out each day, drink a lot of water and try to get a lot of sleep.
This is without doubt the one site that all CH sufferers need, and I thank Caroline Dudley for putting me on to it. I've had cluster headaches (what a totally inadequate term that is) since the early 1980s, when I was in my late 30s. For about 15 years, the increasingly unbearable pain was diagnosed as severe sinusitis, as a consequence of which the various treatments offered had no effect whatsoever. Some 5-6 years ago, thanks to an article in one of my wife's "women's magazines", I finally knew what I had! My own CH condition is episodic: I get a bout from the devil every 18 months or so, each bout lasting between 3 weeks and 2 months. During a bout I have 1-3 attacks every day (one of which is always within 1 hour of going to bed). You all know only too well the indescribably excruciating pain and the accompanying evils. Before I was aware of what the condition really was, I would be pacing up and down in the kitchen at 1 o'clock in the morning, banging my head, with left eye streaming and left nostril fully blocked, having taken dangerous overdoses of the standard analgesics (paracetomol, aspirin, codeine etc) - all to no avail. After an hour the pain would abruptly go, leaving me completely exhausted. Now that I know what I have it is a little easier to live with the problem, especially since my GP is also aware of the condition. Nevertheless, during the periods of remission I am in constant fear that another bout will hit me, even if one is not "due". Having read so many of the messages from fellow sufferers here, I can only be grateful that I am not a chronic sufferer. My heart goes out to those unfortunate souls who are. Nobody, not even the most odious of people, deserves CH in any of its forms. I am currently in the third week of a bout (my last one was in June-August 2000), and I am just praying that this will be a short one. For all those who suffer this agony - the worst pain known to medical science - I hope that they can gain some confidence from the knowledge that there are many of us. It has certainly helped me to know this, and I feel humbled when I read of the courage displayed by so many who are visited by the devil every day of their life. They are true heroes and heroines.
This is without doubt the one site that all CH sufferers need, and I thank Caroline Dudley for putting me on to it. I've had cluster headaches (what a totally inadequate term that is) since the early 1980s, when I was in my late 30s. For about 15 years, the increasingly unbearable pain was diagnosed as severe sinusitis, as a consequence of which the various treatments offered had no effect whatsoever. Some 5-6 years ago, thanks to an article in one of my wife's "women's magazines", I finally knew what I had! My own CH condition is episodic: I get a bout from the devil every 18 months or so, each bout lasting between 3 weeks and 2 months. During a bout I have 1-3 attacks every day (one of which is always within 1 hour of going to bed). You all know only too well the indescribably excruciating pain and the accompanying evils. Before I was aware of what the condition really was, I would be pacing up and down in the kitchen at 1 o'clock in the morning, banging my head, with left eye streaming and left nostril fully blocked, having taken dangerous overdoses of the standard analgesics (paracetomol, aspirin, codeine etc) - all to no avail. After an hour the pain would abruptly go, leaving me completely exhausted. Now that I know what I have it is a little easier to live with the problem, especially since my GP is also aware of the condition. Nevertheless, during the periods of remission I am in constant fear that another bout will hit me, even if one is not "due". Having read so many of the messages from fellow sufferers here, I can only be grateful that I am not a chronic sufferer. My heart goes out to those unfortunate souls who are. Nobody, not even the most odious of people, deserves CH in any of its forms. I am currently in the third week of a bout (my last one was in June-August 2000), and I am just praying that this will be a short one. For all those who suffer this agony - the worst pain known to medical science - I hope that they can gain some confidence from the knowledge that there are many of us. It has certainly helped me to know this, and I feel humbled when I read of the courage displayed by so many who are visited by the devil every day of their life. They are true heroes and heroines.
I've had cluster headaches for over 12 years now...it's great to know there's a site like this that offers help & advice and shows that we're not alone.
I was born Spina Bifida and have suffered with severe headaches for many years Doctors are finding it hard to find the cause of my headaches i recently spent time in the Chelsea & Westminster Hospital doctors there were checking my autonomic system so far nothing found then the Brompton Hospital checked my sleep pattern nothing there either,i feel so sleepy and sick and the headaches make me feel so depressed i am looking at all different ways to help me manage the pain if anyone can help i would be grateful
I have suffered with cluster headaces for the past 10 years, At the moment I have been having headaces for the past two weeks with atleast 4 times a day.I have been put on Imigan injections off 6mg but I am only allowed 2 per day
ive had cluster headaches since i was 29 years old and im 51 now april 3. they seam to getting worst. my cycle however broke from every year to every 2 years. if any one would like to talk about them im a veteran and if any one has new treatments let me know ok .coach c
Hello, and sorry to meet you in a place like this...you seem such fine folks, and you (we) deserve better. Just read some of your experiences, and without being too boring, I have been, a few years back, and now for the past 10 days, going through our, ah..stuff......after being pretty much pain free for about 4 yrs. My first encounter was in 1978, and periodically there after. After all the medical fraternity stuff we've all gone through, I ended up always carring Percodan. Then, when it hit, took a "dan," did my famous impression of the Tasmanian Devil until IT subsided, (upwards of a hour,) further convincing anyone who saw me that no question, I was "hooked on drugs." I ride a bicycle, and always, about 5-7 miles out, I had to stop, get off, take the meds and answer questions about why I was pushing my bike when most people rode them, and doing those funny dances. So, the one possibile help I didn't see mentioned is the herb fever few. It was recomended to me by a friend, and was accompanied with an article compiled from discussions with neurologists, in USA and Europe touting is effectiveness. My Dr said it couldn't hurt, so after 6-8 weeks, I was convinced fever few was the answer! I did not have a real cluster until 10 days ago. Why do all good things have to come to an end? Anyhow, fever few is easily located--at most emporiums that sell herbs, etc. It does come in two basic varities: "regular" and the "extract"...which is suposed to be stronger; but w/o any standards, who knows? But I do know that it worked for me (hey, 4 yrs. is better than nothing) so maybe give it a try. Good Luck, and many thanks for all of the suggestions to help contain this insidious SOB! Incidentally, some of you attorneys out there; do you think there is enough of us to in some way rattle the drug co. cages about the unconscionable (preditory?) pricing of some of the required meds?
I have had these "cluster headaches" now for about 9 months, my doctor is finally listening to me now, no medication yet, but I get a brain scan next week and I'm afraid of what they'll find. I actually feel better now that I have gone to this site, I mean, I'm sure most of these people have had a brain scan and they are not dead!! I really was thinking they were going to tell me I had a tumor on my brain and this is why I am in so much pain! Now I see that other people suffer as I do. I am a single mother with two kids, it is hard to hide the pain sometimes.
Sincerely,
Leslie
well i found something that my nuroglist tried for one week starting with 80mg of predizone(STERIOD)then 60 thenext 2 days and so on for a week .he told me there has been a 80%success in breaking up the cluster cycle. its worked for me so far been two weeks and still ok. and i was only in my 4th week cycle .of coarse my other back up is the imitrex.been dealing with the cluster for 25 years . what a relief. hope this might help some one out there. i still cannot believe there is so many people out there that go through what i have for so long. any one wants to talk just send me a e-mail. good luck and may ya'lls cycle end soon. Joe
It´s me again. Just sorry for my last message. After 8 years suffering this pain, every day, day by day, i just want speak about it, in my own language once.
In any case, this is a great, great, site.
thank you vewry very much.
Alguien aqui habla español?
Anybody speak spanish?
I am 23 year old student working towards medical school. Last year I had a accident while nannying my 2 year old nephew. I fell down 13 hardwood steps. I thought it was only a sprain until I started to lose my vision and black out. Doctors wanted to send me for a MRI they thought it may be a tumor. I am completely disabled sometimes from headaches that cause vision loss. The last two weeks however I have been having terrible stabbing pains and my right eye has been terribly affected. After suffering from tension headaches and migranes the newest headache seems to be clusters. However I found that when I fell a year ago I had pulled ligaments in both knees, sprained both ankles and suffered a fractured neck. I take no medication , havent for years and I treat everything naturopathically. The way I look at this trial in my life is that at least I understand what it is to suffer, we take everything in life for granted it is only when you yourself are affected that you reach out to those who have long been in need.
Just advisor: loss can occur with pain. Go deb t-free when
knowl ege is 'vailable. There ar e prob ably more information out online to people thanx to the internet.
Imitrex used to be only relief...but after several years of use, I became 'immune'...now get some relief from Maxalt! SIGNA cut back the amount I can get to about half what I need to get by each month and we are fighting to get needed medication. I've tried everything and been to everyone and the damn "Health Care Provider" limits the only relief I have found.
my son Dale suffers from Ch he has been on sansert&amitriptolene for about 4yrs.He almost died he was in intensive care for a week the doctors say it was from the sansert I need to know if anyone else has had a problem with this drug if so please email me a.s.a.p
Interesting place! see "we" have tried not smoking, not drinking, hot water, cold water, darkness,etc. nice to read of others with this. I have pain right eye and ear, cannot stand to touch even my hair! when i was 2 i fell down the stairs and almost ripped the right side of my face off. 4 skull fractures by age 12. any one else like that?
My prayers and thoughts are constantly with you all, especially those who are suffering through all of the different emotional and hormonial swings like i do, searching without any real solutions. Even though at times i've been loosing hope and haven't been my normal self, by ways of courage, strength, and faith, i know that sometime, and unfortunately it takes TIME, everything will at least be able to be figured out somewhat.
I am a 27 year old female and have had cluster headaches since I was 17 and started taking Depo Prevara, I have suffered aprox once a year ever since. I am in a bout right now. I feel very alone. I do not have insurance and am unable to aford any Tx then Oxygen and that is getting out of hand this time. I would very much like to hear some suggestions for at home Tx that has worked for some of you.
Been suffering Cluster Headaches since 1992 and these became chronic by 1995.After many years in the wilderness and close to losing it I have been prescribed Lithium with some sucess.I still think Tiger Balm is the best treatment when I have an attack.
Thank you so much for this site! I stumbled across it while I was trying to look for more information regarding clusters, which I have suffered from for over 20 years.
Can anyone die from clusters
I have been suffering with migraines for 25 yrs..I am 38 yrs. old and they persistently get worse. I am under to supervision of a neurologist. He finally found something called stadol ns that worked well..but then he took me off that and treats them with percodan and mepergan.. Can you please tell me something to help? Thanks
Have been suffering for 20+ yrs. , and yes, I thought I was pretty much on my own. If someone has never had one or seen a loved one with it, they have no idea of the pain. I will be a regular at this site.
I just found this site and i cant believe it!! Im 31 years old and been suffering with my (devil) for 8 years. Im a cronic sufferer and its hard to deal with. Im married and have a 2yr old and a 4yr old. Ive been on many med.but the only thing that helps is my shots of imitrex. Im excited to talk to some of you about your headaches. My wife is very understanding but she has no idea what living with the devil is like.
I started having these headaches about three weeks ago. I have just finished taking treatments for lung cancer which included chemo and radiation. The last treatment was the 28th of December 2001. Dont know if there is any relationship or not. The doctor says not. I was just wondering if there was anybody else that has went through cancer treatments and then developed these type of headaches. Thanks Tom
Found your site this am. I've suffered from CH for 38 years (am 54 now), they come less often and less intense, but pain level can still reach#10! Have tried most of the drugs and teatments, but the side effects worry me more as I get older, so I usually just sit up alone in the dark and wait for the BEAST to leave-I KNOW IT WILL SOONER OR LATER! Thanks for your site, it's always good to know your not alone. Steve W/type A personality
Thank you for the most informative website.
Have had to put up with CH for fifty years and finally today find a site that understands.
Have tried many solutions prescribed worldwide but find the only way to get a little relief is Ergotamine.
From age of fifteen to 58 the attacks used to occour twice a year for a month at a time reaching a peak of 5 a day.
Time of year gradually changed because of a seven month break between attacks rather than six months.
I had major surgery for cancer at age 58. Now the attacks have changed to random. Am just getting over a two month bout after a break of fourteen months.
Thanks for the website and best wishes to all fellow sufferers. Lets hope for a definitive cure one of these days.
Jim.
I have been suffering from ch for the last 8 years, although I was just recently diagnosed, I never knew what the headaches were before, and unfortunatley was diagnosed during the end of the last cycle. I have yet to try any medications besides Imitrex and Fiouricet, Prednisone may have stopped the cycle the last time,or it may have just been the end of it. I guess I won't know until the next one. Well hello to everyone, and trust me I feel your pain.
hello i was in an accident two years ago eversince then ive been suffering with these migraines.im learning something everyday about the disease.i need to get on disability.does anyone know anything about it?and how much does it pay you?well thank you,lee ann
I am going to be 50 years old next week and for the last 27 years I have been suffering from CH without knowing it. I have tried every known pain killers, every drug against migraine without much effect. I believe many doctors I visited thought I was a "mental case" when I started describing the pain I felt. So, for years I did not want to see doctors any more or even to talk about the pain I was experiencing. But during my last very violent episode of CH, last October, my wife who was afraid I would do something crazy during one of the crisis went into a very active search for a doctor who would be able to do something for me. And she found one in Geneva who, after being told my symptoms over the phone immediately diagnosed a CH and prescribed me VERAPAMIL. And my life has changed.... VERAPAMIL has dramatially reduced the numbers of crises (I would spend up to 6 hours a day in pain) as well as their intensity. Knowing the name of my disease also allowed me to discover this web site and OUCH. And finding out that I was not alone has been psychologically a tremendous help. It has also helped my wife and my children understand what I was going through.
The last episode of CH ended last January, but now I dont fear that much the next one like I used to do before, because this time I have weapon against it and I know I am not alone... Thanks a lot for this web site and your support
hello everyone, i am elated to have found this site and know that i can relate my feelings to people who realy understand what i am talking about and realy care.i have been a ch sufferer since sept 1989. in the early years, there was only hot tea, sudafed, self massage and hot showers on my neck in the middle of the night while trying not to wake up the whole house. of course, all of the above was useless.then came imitrex and to this day, it is my only hope. if anyone out there has opinions on maximum daily dosage, please contact me. this past weekend, i took 6 soots in a 24 hr. period without realizing it or maybe not caring about the danger as long as i could releive the pain. my current episode began 3 weeks ago and is very intense. i called glaxo but of course the person on the other end of the phone is there to protect the company not the consumer. i simply wanted to know what six shots could do to a person but all she was allowed to tell me was that the daily maximum dose is 2 shots and to consult my doctor lol---- the only way any of my doctors will ever know anything about cluster headaches will be if they experience one. and even then, i doubt that they would know what course of action to take. most of my knowledge on clusters, i learned on my own. the arrogance and lack of caring on the part of most of todays doctors is nothing less than shameful. despite my obvious disgust with the medical establishment, i am so happy to have found ch.com and if i can be of any help to anyone, i would be more than happy to do so. thanks, joe edore jedoresr@nac.net
Hello! I was so excited to have found you. I'm a 37 year old mother of 3. I have been suffering of cluster headaches for the past 22 years. I have tried every kind of medication that is out their. Nothing has helped me. I even tried accupuncha that did not work. When I get my attacks, I cannot cope with them all I do is cry and scream becauce the pain is so intense. No one understands what I'm going through. I've told my husband if I had to choose between the suffering or dying; I would rather die. It's awfull. I don't look forward to going to sleep because I am so scared of what tomorrow is going to hold for me. I can't even send my 3 children to school. As for myself I can even go to work..I have alredy missed 2 weeks of work. Do you have any suggestions or any cure to this Monster..I want to get rid of this for good. Please help! I am so desperate..My doctor does not know what to do for me. My husband has been so supportive and so kind but he cannot imagine how painful my pain is..I am so scarred and at the same time I feel so angry. It has taking over my life..
Please if you have any suggestions write to me...
dumou@ntl.sympatico.ca
I have been suffering from cluster headaches for the last 10 years and have found oxygen the best in staving off the pain before it gets intense.
Good to see there are others who can understand! I've never met anyone that has had these before and I don't think others understand; even medical people (doctors, nurses, etc.) how bad it can be. It seems nothing works to stop these from happening (when going through a 'phase' I'll get 1-2 a week) though some meds (Imitrex, Zomig, Amerge, etc.)do allow me to at least abort some attacks although it's much like putting a lid on a boiling pot which eventually boils over with me already taken the maximum dosage. The only thing that helps me is Nubain (usually) or other drug to put me to sleep. Thanks for the site. It's nice to at least know there are some who understand.
Hello all,
Thank you for the excellent website, it helped me figure things out! My husband suffers clusters.
As a naturopathic lecturer and consultant, I took the clue of the serotonin malfunction and the similarity to epilepsy. This led me to L-Tryptophan, which we use as the precursor of serotonin, and L-Taurine, which we use to stabilise brain activity in epilepsy. The dose was 2 grams each per day, away from food (to maximise absorption into the brain).They have steadily reduced the severity and frequency of his headaches, and may be helpful to all of you. This is why the Red Bull helped. Try the combination and see.
Good luck!
I found that my head hurts when I have alot on my mind and things tend to tence UP to my brain. So what I do is relax, don't feed your headach and focus on the better. G-Luck
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