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Below are the guestbook entries from August/September 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 I have been with my best friend and mate for nearly three years. When we first met, he warned me about a curious condition he had called cluster headaches. His description of these dreaded attacks, sounded, quite frankly, a bit of an exageration. The whole thing about attacks usually in the fall, and the bizaar regularity of the attacks, strained reason, and I sort of kept in the back of my mind that Kevin was rpbably a bit of a hpochrondriac. Anyway, we moved on in life, and (not surprising to me) no attacks. Then, four nights ago, simply what seemed out of nowhere, it was as though something was suddenly trying to rip Kevin's head or face off, and I have never been so terrified for someone I love in my whole life, and, needless to say, I am now a firm believer. He has had several subsequent attacks since the other night. I finally recovered from my revulsion at such extraordinary pain, jumped on the Internet, found this Godsend of a website, and here I am. Desperate to find a remedy that will even vaguely work (Margi! Water helps!!!) I have much to learn, and will continue to look for answers to help this wonderful person find refuge from the Beast. God bless all of you who share what you know to help others. It amazes me how quickly priorities can suddenly change, how what was so important five minutes ago, can so suddenly become irrelivant and forgotten.William Gamble (Bill to my friends) <iwillgamble@earthlink.net> Long Beach, CA USA Monday, September 30, 2002 at 18:40:59 (EDT)
This is my first ever visit to this site and i cant believe im not alone suffering with the "curse" as i call it.
i first started with them about 6 yrs ago.....it was a nitemare...very scary, i was in constant agony.to cut a long story short....they stopped about 18 mths ago...but started about 3 weeks ago.i was mis diagnosed many times... now i am booked in to see a nuerologist who will hopefully treat me in the rite way.i go see him 7th oct 2002 so please watch this space for developments. Heres to the end of the "curse".
g
Wow! My eyes welled up last Saturday when my wife showed me this website. I absolutely just could not believe what I was seeing. My military doctor "did" diagnose my condition as CH but she did not once tell me that this would never go away!!!!!!! I was under the impression that she was prescribing me some cure and that this would all be over in a week or two. Anyway when my wife showed me this my tears were actually tears of happiness(I think)but at least I knew that...holy cow this crap I've been going through for the past year or so is really a problem...I guess! I(we)was reading and reading and reading and I thought I was dreaming at the same time. I had no idea! I just kept waking up every night, night after night, after I would go to sleep and just getting more and more pissed off each day wondering what I was doing wrong to my body to be having this "ridiculous" pain every night. I was literally eating a box of 50 BC powders and a bottle of tylenol every two weeks for months till Leslie(my wife) said enuf was enuf. Well I have another appointment soon to change my script so we'll see. Anyway this is my first time talking to someone who actually understands about this. I'd love to talk more but I can't figure out how to use your chat room. Maybe someone can mail me and give me some pointers or I'll ask my son how to use it.
Thanks for being here.
Scott
pabilly@fair.net
I'm a long time sufferer who just discovered this site. I take comfort in knowing there are so many people looking for cure or at least some relief from this affliction.
good luck to all.
Hello. I am a 35 year old male who who is currently suffering. I can't quite describe the feeling I have after finding this web site. I never knew there were other people who felt and reacted the same way I have for so many years. I used to think I was just going mad... I am in the military, and eventually stopped going to the doctor when these cycles occured because all they would do is give me motrin, and make me feel like an idiot because they never believed the severity of the pain I felt. Back in 1992 one hospital commander finally sent me to a private nuerologist who gave me the cluster diagnosis. For those who have had experience with military doctors you probably won't find this next statement that alarming: Even though the private nuerologist gave the cluster diagnosis, never again have I been allowed to see a specialist, and I think it is because the doctors do not believe the horrors I tell them. It has been almost 2 years since the last episode (which is the longest period I have ever gone without having a cycle of clusters) and this cycle started about 3 weeks ago. I very often remember to thank God in my prayers for every day I have without this pain, and how ironic that I was cursing him last night for it (sorry!!!)Excuse my rambling...but I hope to go to the military doctor tomorrow, and if it takes it I am going to insist on not leaving until they try to understand what I'm going through--perhaps this web site can give him/her an insight. Again, thanks for the info.
ch suffer for past 16 years thank you all for you letters god bless you all though it sucks im not alone
Seeing this sight is so validating and depressing! I have sufferd with this undescibable pain since I was 17 and thought it was some sort of warped side effect of (actually inhaling) pot! That was the first cycle i ever had.
years passed and I still get them, once sometimes twice a year for usually about 3 weeks. The pain usually comes once a night somitimes twice, sometimes in the day. The cycles have varied over the years. When we lived in Richmond I always got them in Dec.then I got pregnat with my 4th and began getting them in the autum. I have 4 kids and have never gotten a cluster while pregnant, but have while nursing, no meds that sucks.
As i get older i feel less able to cope with it all. The pain drains me so completely. The meds keep the pain at less then suicide level but leave me unable to function. i can't concentrate or remember and I am very dizzy.
Thank you for making this web site. I am not glad you are there, I am truely sorry for you. I am relieved to know
you are there, and that you know what i am trying to survie right now.
I want to get in touch with whatever University hospital is studying this and donate myself to the cause of finding a cure. I'm going to suffer anyway I might as well let someone learn from it.
Hey, had clusters as far back as 10-11 years old. Best thing in the world in Nardil. I dont care what they say about it, its great. I have a life now. I can drink a beer (american made only ie Miller lite ext..) you can really eat more than what they tell you. its a great drug.
Hi fellow sufferers, NARAMIG 2.5mg works for me one a day. (Naratriptan)
I am a 20-year veteran, I was twenty at the time of my first attack living in Muzenberg, Cape Town South Africa. Twice a year for about three weeks to a month, the days are long and the nights longer, sometimes up to 8 in a 24h period. I have tried during all this time to get information on CH to no avail, Dr’s fobbed me off with any old painkiller. At the Dr’s practice where I’ve spent many an unhappy hour trying to get relief, not for one minute thinking I would be handed the Holy Grail. After one of the wife’s specialty omelets oh the pain, The receptionist at the Dr’s says sorry no appointments left tonight, as you do I insisted, The Quack came out “Is it contagious” any way he fobbed me off and told me to come back tomorrow morning. Head pounding I don’t take rejection well and told him to shove his surgery up his a**s and walked out. I got home and went straight to bed no peace there, the Misses sez go look on the net for help, up I get and first hit I found this site. Don’t try looking at a screen with a ch headache ouch. Boy so many of us in the same boat armed with a print out, tail inbetween my legs I’m back at the surgery give me drugs, After much apologizing he gives me six little green tabs I et one straight away, four headache free nights later the cycle was broken. For those of you that have been there and wake up the next morning headache free I gotta tell you’s its up there in the good feelings trophy cabinet.
Thanks for a really great site, people its been one HELL of a journey, If the tabs don’t work next time I’ve had one cure there must be more. Supplements whilst taking Naramig, Black Coffee and Kalms a mild relaxant available at Sainsburys #3.99
Believe me I know what everyone is going through my ch last about 10 to 30 min and usually are about a 6 on the kip scale. nice to know im not by my self good luck i go to the dr tomorrow to get something for the sleeping giant
I am grateful to have found this web site. I have been an episodic sufferer for at least 18 years now, I am 40. I have been cluster free for 2 years until the beginning of September 2002. This run has proven itself to pale all other runs... In the last 14 hours I have had 6 headaches, which is uncommon for me. I usually get 1 (bad) headache every 24 hour. But this has got me beat hopelessly beat, the pain has been between 6-10. I have never had the experience of waking every hour to hour of half of falling back to sleep with another episode untill today... I have found this SITE to be very informative and helpful to know I am not alone... I cried at reading some of the stuff on the intro page out of relativeness. Well its time to head to the pharmacy my imitrex is ready...
This is my second bout with Clusters. The first was three years ago. So far this one is now in its fifth week. I have tried numerous medications to break the cycle, but no luck. Last time it took six months to get out of the cycle.
I am sorry that I do not have a suggestion as to how to get the pain to go away or to stop the cycle. Drinking water, lots of, seems to have helped, but they have not stopped. I use immitrex or migrainol and fiurcet when they hit, but more times then I want to count I just have to ride them out. I am not a plesant person when the attacks come, my wife knows to make sure the kids and even the dog stay away.
It is only a comfort knowing I am not alone, but not comforting knowing others have to go through this as well.
I've been a cronic cluster headache sufferer for the past 40 years. I live on lithium and verapamil daily as preventers and use Zomig to abort the pain. Unfortunately, my insurance company has reduced the number of Zomig tablets to 6 a month so I am in trouble for three weeks out of every four. I could use some advice as well as a doctor near Jupiter, FL who does not think that cluster headaches are a figment of one's imagination.
This is my second year, with the "MONSTER". When it all started I was diagnosed with a very bad sinus infection that effects my whole head. Medication such as Allegra & Claritan was given and chosen over the counter drugs. But reading into the types of pills I was taking due to being desperate. I almost was given myself liver problems and at the verge of losing my voice box. I am single parent and noted that I can not function (housework) along work a full week, to a point that I was given several warnings about my sick time. In this last month I was hit with another bout and my co-workers and supervisor finally saw it first hand. They thought was going crazy, because I just kept hitting head with my fist and rotating in different angles to find comfort, just to STOP THE PAIN. I sit here knowing that it is about to happen real soon, and I just afraid that it will kill me. God forbid.
thank you 4 the info it's helped me to no more about ch.I had started having them when Iwas 17.going to be 47 in oct.and that,s when it starts ends in jan. my doctor tell's me that most ch. people's headach's my stop by 50 years old if they began to get them when thay were young? hope so.thank's 4 the ear an a grate place to visit.
I have had headaches for yrs. I wake up with them anytime at night. Eye lids, neck pressure, face pressure around nose and hurts to walk. Take otc meds excedrin and motrin sinus/headach. Last 3 dys did not work. They usually work within 5 to 10 min. It helps to know I'm not the only one. Thanks!
I'm not sure what type of headaches I get yet. Have had them for years. They wake me at night. Sometimes otc meds work but the last 3 days they haven't worked. It's all in my face, neck, & head and feels like pressure in my neck. I've learned alot by reading your messages..thank you
Hello all, I am a male, so supposedly this is "rarer" than with women, or so I have been told. I have been granted the gift of Migrains since I was 11, and have had the great opportunity to experience Clusters for the past 9 years. I'm 40 , so dealing with the pain and poorly, or miss-diagnosing Dr's has been an interesting journey, at best. I Finally did find a Neurologist that correctly pinned my problem(s) down. As for CH's the Beast arrives with no warning, and attacks without fanfare. He stays with you, lurking in the shadows of your skull and when you least expect it explodes into your skull like a thermal bomb. Unlike a Migraine, which can "pound" to the beat of your racing heart, the "Beast" applies a constant pressure. The waking in the middle of the night at the same time every night makes one think that "Hey, I'll wake up before it happens" or "I'll stay awake until after the time has past." But you only end up being compleatly aware, and awake when the "Beast" launches his latest offront upon your skull. With a breath that is hotter than a white-hot rod of iron, and ferocity greater than a protective mother, the onslaught seems too much to bear. But bear it we all do in our own way. I am greatfull that there is such a place as this that I can expound my thoughts on, and perhaps talk with others that suffer through the lurking of the "Beast". It is fall again, and time for my yearly battle with this critter. . . May the best man (human) win! (I know I will, I always do!)
Wonderful to find your website! I had NO idea there were so many people with this affliction. Maybe this will help someone out there. I am 48, female, and have had CHs since my young 20's. I've been on several medications ... fiournal, cafergot, etc. over the years, but nothing aborted the headache or the cycle. Finally, Verapamil (sp?) was perscribed, along with O2. I take 360 mgs of Verapamil for a couple of weeks, with gradual reduction in the amount taken over the next 2-3 months. At 240 mgs, it did not abort the cycle....at 360mgs, it seems to do the trick. If I catch the VERY beginning of the headache, I can get on O2 and get rid of it within 10-15 minutes...if I catch it in the throes of severe pain, it doesn't do any good. Ice only diminishes the pain for a short time. Head banging only provides a short distraction, but sometimes that gives an instant of relief that is appreciated. I was given prednisone once when the Verapamil didn't abort the cycle. It helped, but when I was weaned off of it, they returned. I took it again, and suffered some very weird side effects: panic attacks, severe morning pain in my legs and ankles, manic episodes, depression, constipation and bloating, etc. Weaned off of it again, and the cycle was over. I don't understand how people live with chronic CHs, I seriously considered putting a bullet in my head once, it would have felt better than the pain. My best wishes, thoughts and prayers go out to all CH sufferers. This page will also be helpful to family members and others who are trying to understand just what is going on with someone who suffers from these headaches, and may help them to feel not so alone in being helpless when these attacks happen. THANK YOU SO MUCH for your site....
Hey guys, Great site. Been having CH since I was 17 years old..48 now. Also have Chronic Lyme Disease for the past 13 years. Since I have been on antibiotics my pain has been a lot less. Having an episode now..just started Prednisone...8o mg Of course the pain will be back but I am happy for the break. I hope and pray for all of us that someday they will find the cure for this hell...Margie
thank you all those people out there whom i have just read your entrys iam not alone any more when does one stop being a guiny pig i am not giving up but stay safe
i have had migraines for almost 30 years,,they have lessened in the last 5 years,,but i now am hooked on fiornal/codeine, but it's the only drug that works i have had just about everything they can prescribe from non narcotics to narcotics, my answer to you is if you really don't have to go on drugs please don't,,,they are very hard to go off. you must be weened off gradually,,so i am going to do it this month.. i no i can,,i would rather have the headache then be addicted as i am,,,if there is anyone else out there that is is hapening to please write me,,,i am very scared but must do it for my wel being....thanks joanie rizz
It is amazing reading through the post to find out what you think are strange ways of dealing with the pain are actually common among many people. I have been getting clusters for about 15 years. Until very recently I thought they were gone. However, this year after a five year remission they are back stronger than ever. Oh well, life goes on.
******just one more try....so DJ, Margi, if you see this help me get this thread going- Marc's bday is Fri, 9/20- he cares about so many of you-Jonny, Slammy, Elaine, Catlind- please find this, and send him TONS of good wishes- he will be blown away!!! I sure hope this works...again, that's Marc, of the finger-pointing-at-you VERAP, of Morro Bay, CA- wish him a happy bday...and tell him "you look maaahvelous"....thank you....I hope!!!!
******just one more try....so DJ, Margi, if you see this help me get this thread going- Marc's bday is Fri, 9/20- he cares about so many of you-Jonny, Slammy, Elaine, Catlind- please find this, and send him TONS of good wishes- he will be blown away!!! I sure hope this works...again, that's Marc, of the finger-pointing-at-you VERAP, of Morro Bay, CA- wish him a happy bday...and tell him "you look maaahvelous"....thank you....I hope!!!!
HEY, I'm a newbie who is out of town, and I really can't remember my username- I'm locked out for now! I need someone's help! Your very own Marc is having a birthday on Fri- that's 9/20/02-he's somewhere between young & old- but he's waaay too good a guy for you to let his bday slip by unnoticed.....PLEASE get a thread going- something inbetween irreverent & well, let's see, uh crude- would suit him just fine....he's given so much here...please send him a load of good wishes...and please, if you do, tell him "you look maaahvelous". I would really appreciate this, as I will be out of town on Fri. That's Marc, (the finger pointing-at-you VERAPAMIL guy)-and thank you...let's make this the biggest thread ever! Now, I'll leave with my fingers crossed- oh please oh please oh please! You guys are the greatest!!!!!
My husband has had CH for 21 years. We thought the hell was over. It's been five years of remission. They are back. He see's his doc tomorrow. After reading all the other suffurers storys, I see this could just be a new cycle for my husband. Has anyone been free for this many years after suffuring for 21 years. The doctor told us they usually leave after 20 years and never return. We really thought they were gone. I will do anything to help him. The problem is, there is nothing I can do to make him feel any better. I pray for all CH sufferers to be released from this demon. Kim in San jose CA
Your site is most informative. This is 4th bout with them and the first time time I've used Prednisone which seems to be working. I got my first headache free night in a week and a half last night. I hope it continues but your information says that they may return when treatment stops. I am not looking forward to that.
living with "it" for 27 years now.Not what one would call an old friend though.im founf relief...that has been working 3 days now...a VERY long time for me
oxygen...
a 5 day program of prednisone 60mg-40mg-20mg
50mg of Trazodozone (anti depressant each night
...I can only pray that it will work,just as I pray for all of us to find our way out
peace
...david
Hi, I've had migraines for most of my life and find a little relief using Excedrin Migrane...the problem is that it, and ibuprofin give me a sever scalp reaction. This has only happened in the last 2 years. My scalp itches so badly I end up scratching it raw. I just wondered if anyone else has this reaction?
Hi everyone, another message from another clusterhead. I recenty moved from the U.S. to Canada and wonder if stress could be a factor in the onset of the beast. My last bout was in 8/98, 4 years ago, prior to that 7 years. I'd like more info on what may causes them to reappear. Now that I've just moved I have no doctor and have to go back to the states for the prednison and imitrex. I cant go for another week so hope I make it that long on OTC stuff. I sit her now with a glass of water at the computer refilling every 1/2 hour hoping it helps as suggested. Im so tired and fear the next attack. My last one was about 3 hours ago. It makes me feel better knowing others are out there suffering just as I am even worse in cases. Id love to hear from anyone outthere who wants to talk between flair-ups.
Greetings everybody...
For the last few days I have surfed this sight, thank god for the insights,information,really making the reader know that not only are there other people in this horendous dilema, but there is help, support, such an abundance of information, thank you!
I am a newbie, just [finally] being diagnosed with clusters yesterday. Trust me, I feel so much for the people out there who have to endure this awful devilish situation without being diagnosed for long periods of time. After reading your site, I knew one thing, I better be sent to a contemporary Dr. who, if I found didn't know much about clusters, I wouldnt have taken much of his time. Thankfully, he knew. I'm not happy, but therapy has started, but ohhh, so many questions not knowing since this journey has just begun.
My story concisely, is two weeks ago I first began to develop severe red eye, then I had at least three or four headaches the next couple days. I went to the ER, it was a weekend, at the end of one of the episodes. The pain hadnt been of what was to come. I was told it was pink eye. Okay, I said, didnt make sense, as I've been around pink eye in my life having 4 children, being a volunteer in my kids school for years. It didnt go away, it was just worse, then more attacks. Coming off another attack, I again went to the ER, different hospital, actually the hospital I think is one of the best and where I normally go. There was a five hour wait, the nurse said call your DR, or go to another ER. I did, pink eye again. I was in tears, I didnt want to argue per se, but I questioned. Again arrogance. "Dont you know there are different kind of pink eyes, and yes it can cause pain" Yeah Right. I came off of that attack, being given vicadin for the future, which I hate in the first place, helped some. The next day, more attacks, vicadin just dented the pain. The next day, I had three in the am, they really began like clock work first one almost always in the very early am. I was so frustrated, my family thought I was nuts, then I had another series, which after the third by noon, I went to the ER again. The forth subsided some, waiting, crying, finally when I was seen, I had another attack, which in as much as I am so scared of, it was good that this happened I suppose. The Dr. knew, he said clusters. Took four hours to stabilize,it wouldnt go away.I was given prescriptions for prednisone,imitrex tablets, and Tylenol with codine, and was released. What what was so disheartening was that I had another attack in the parking lot of the hospital while waiting for my ride. I was so sick from all the meds they had given me, I went home determined to follow up on all I was to do in the next couple days, again this was a weekend. I was determined to figure out how these headaches came about, so I could catch them, feeling different pings and pangs, I basically stayed on the codine all day Sunday, thinking I would head any off.
I made a Drs appt Monday, but he didn't think they were clusters, as the O2 didnt help. I thought back on that answer later and I think it did help some, perhaps I was thinking it didnt take it away, but did subside it. I made an appt. for a cat scan, and was referred to a neurologist. I didnt fill the prescriptions, wanting to wait, as I am in the middle of insurance problems, which are fixed almost now. If I have to, I will pay for what is necessary. I learned with the pink eye, and 141.00 later for only two scripts that I have to be sure.
The neurologist confirmed what the last ER Dr. thought. I had the classic signs and symptoms for clusters. I am a 44yo female which is rare, but I have had these only once long ago, like 12 years, only one cycle as I look back, and not nearly as bad as this round of pain.I have the droopy eye, the severe tearing, the nasal drip on one side. He said, blonde hair, blue eyes, another determining factor even in men. Also having been diagnosed with anxiety, and Bipolar a few years ago made sense too. I am not on any meds for any of that anymore. We talked, I asked many questions, which occured mainly from the knowledge I gained here, but have so many more. I was given prednizone again, 3 20mg 3 times for three days, then 2 days then 1 day. That he said would help for the dull pain I still have around my left eye,forhead and upper jaw. Also to help with dissapating the redness, which has been dissapating on its own the last few days anyhow. Also Imitrex nasal, 20mg.
I havent had an episode for four days, but dont feel quite right, eye not as red, dull pain still. I asked the Dr about would this be it for another 12 years, he doesnt know. Being so new, knowing I am keeping a full diary of everything imaginable. I just dont want that pain! Am I done with this cycle, again we dont know. Still dont completely understand about the imitrex, can only use twice a day. He said it may stop the cycles or help with them. But if I use twice, and it doesnt work then what? Or if I have 2 or more headaches? He basically said I have to put up with it, I have to use it at least three times.Then call him. Put up with that pain?
This is so scary, and I know I talked way to much, wanted to tell my first story, it may even help that next newbie who is so scared and confused with not knowing. I would appreciate any responces, and feel free to email me, I will continue to learn as much as I can, and hope in time, I can contribute as eloquantly as so many of you have done. Thank you for the opportunity to voice...Thank you for this site, we will beat this, we have too...we just do! Pat
Hi. I have suffered headaches as far back as i can remember. What I've notticed is that weather changes and headaches go hand and hand. I've found that sleeping with a humidifer on helps. If I wake up with one, I take a very hot shower(For the steam). It may sound Gross but another thing that works is a putting water down each nostral with a straw. I really hope this works for some of you. GOOD LUCK!! Yours Truly
I have suffered with cluster headaches for more than 20 years. The doctors just shake their heads and try anything.
Some good and some not so good. Just in the last 2 years have I found anything that would give me some relief.
Stadol and pure oxygen is the only thing that will break the cycle.
In my case they always start by once a day. Usually at bedtime. Then after a few days it's in the middle of the nite, and by the time they are full blown I have a headache at least 6 to 8 times a day. They usually come in Jan. and last until March sometime. By March or even Feb. I'm suicidal almost. I don't think there is a pain as severe.
No person who does't have them understands, as I'm sure everyone of you who suffer knows.
With Stadol spray and 8 litres of oxygen in 15 min. I get relief until the next one.
I sincerely hope this helps someone else. Larty
Hi just been DX with clusters, on 2 wks of Pred and not any better, tried verapimil amd now will go to Depokate SR 500mg at night. Anybody tried Craniosacral TX?
keep it up umu africa.
Dear all
Reading this web page I found that I have cluster headache.It started when I was 24 years old.Now I am 46.At the beginning I visited a lot of doctors but without any help from their side.Diagnosis where neuralgia trigeminus or untypical migraine.Reading some medical literature I found out that I do not have any of this diagnosis.So,I stooped visited them.
Since today I have never heard about cluster headache.I was very pleasently surprised when I found on this web pages (and some others)all my symptoms and I am very pleased for this information in my own language.
I am just in period of very painful headache and I must say that I am afraid for my life every day when I have a such pain.After reading this web page I feel much more calmed.
Every information you can forward to me will be extremely helpful for me(maybe you know some addresses in this field in my country-Croatia).
Thank you very much in advance,
Best regards,
Dina
I am a practicing dentist, and I have had cluster headaches for 31 years. Like most of you, I have probably tried everything. It's great to find a support group where we can share our experiences with CH.
Dr. Wright's Circulatory Feedback
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been very helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time for this to take hold but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to concentrate on keeping blood away from the head. He thought the easiest is the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. I like to keep at it a few minutes longer than seems necessary to insure success.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
I am 19 years old and I happened to come across this site while i was looking for tips on how to deal with migrane and cluster headaches, which i suffer greatly from. I try to describe the pain I feel to my sister or friends, but they often times think that I am overreacting. I have tried many different types of medicine, nothing works. I got a prescription a couple years ago (I dont remember what the name of the drug was), but all it did was make me really dizzy and tired, it didnt do anything to cure the pain. I have been thinking about trying Imitrex, but I heard it can be ineffective. Anyway, I guess I'm just glad to know I'm not alone.
Hello everyone!I'm 23yrs old and I've had cluster headaches everyday for 2yrs now. I get up to 6 a day and they last 1 hour long. I get scared, because I never had a headache in my life until 2yrs ago. They are very painful!! There always on my right side of my head, neck, month, jaw,eye. I've tried imtrex,vapermil,deperkota,etc. I've tried all the pain pills percocet,darvoct,etc. Nothing seems to work. I get so mad because I've never did drugs, so why aren't they working? I had to stop working because of the pain and I get so many headaches a day. No job want's a person working for them that's like that. I'm a medical assistant that just graduated from college, I would love to go to work in my field. I pray every day that these headaches would go away. I ask myself how come bad people don't get these only go poeople. I hate it because I really don't want to go anywhere because I don't know when the next one will hit. I've tried the heating pads,hot showers,meds,beating my head,ice packs, rubbing my neck,head etc. NOTHING WORKS!!! When I go anywhere I take a cooler with 2 ice bottals in it and my pillow. My freezer is full of ice bottals. I just want to know will I have to live in pain for the rest of my life? I"m sorry for everyone who has cluster headaches or any other kind of headache! You all are wonderful people. Thank you for the site. I've learned alot from it. May God bless us all!!!!
Hello my name is Cisco. English language
is my second language . I visit sites like yours to learn new english vocabulary
words and improve my english grammar
. I hope to have effective communication
and business communication
for a new job in US. I learned a new word of
the day from your site. I plan to be public speaking
and business writing
better now from your site. Thank you.
none.
Hello Eveyone, I just got back from the doctors today...Cluster headaches are back after a two year drought. Boy, can't say that I have been very happy about but thought I would visit some sites on the cluster headaches since its been a couple of years. Needless to say misery is looking for company and advice. I have to agree with most of all you that no one knows what its like to be sleeping and wake up with a full blown attack to a debilitating point. Some of my friends just can't begin to understand what I go through and probably never will but its nice to know that there are good normal people out there that can understand and relate...Thanks for all the info. put into this site for others like myself to read...Christine - New Jersey
Hello. I was recently diagnosed with cluster headaches and seem to have completed this "round". One thing I didn't see on this site that my doctor did was put me on a sleeping pill for three nights in a row. I slept great and had no attacks. I went about a week with no more headaches. I then had one that I treated with Maxalt. I again did the three nights of sleeping pills again and have been attack-free for the last month. My doctor mentioned that there's the thought that this is tied somehow to your sleep cycle and that this treatment may help.
Of course, neither I or this site want to put out any medical advice, but you may want to ask your doctor about this.
Thanks for the great site.
my name is linda. i am 40 . i have had vascular migraines since i was 12. i have so had enough of the burden of them and the pain and the miserable life i have been handed because of them. they have ruined my life and i know that they will never go away. people that do not get headaches have no clue what we go through. the callouts at work, the missed social events that are important to us, the ruined holidays, the hours upon hours of sitting in the e.r. or the non-stop fighting with the doctors on the phone to get some pain medication, and having peple make you feel like the only thing you are is a drug addict, when the only thing your teally looking for is some pain relief and not a "high". welcome to our world............... its really a shitty place to have been thrown.............................
I'm not sure if this is the right site but it's all I can find that seems relevant! My mother (78 and lives in the UK) has suffered from migraines for many years she is now in Pizotifen 5mg daily or nightly - not exactly sure which. Since then she has suffered terribly from shooting pains up into her head and down to her feet which is particularily bad if she talks too much! It is often bad in the morning and a cup of coffee helps! She has asked her doctor if the medication might be stopping the migraines but somehow the tension is finding another way of attacking her or if it could be a side effect to the medication. Would love to hear from anyone who might suffer or suffered in the same way.
What a joy to find your website. Thank you SO much for putting it together. I have not had a series of headaches for four years--and now they are back. Last night was awful--but it is much better to read about cluster headaches and to know there are others out there. Thanks so much.
hello fellow sufferers. i was just diagnosed with cluster headaches this week, what a relief. ive had these headaches since i was 12 years old, 13 years now, and its wonderful to put a name to something thats so terrible. maybe now i can come to peace with my affliction. it feels good to know that im not alone and that people out there truly understand what i go thru.
Hello, it's great that I have been able to find this page on the net. Until now, I really had no place to go to find information on my headexplosions. I have been at a total loss to try and explain how I feel during an episode, even to my doctor, whom I suspect has no idea what it is like to have a headache like this. I try and explain it to people around me, giving them a good reason why I have to leave work in the middle of the day...but to no avail...Everyone always says the same thing..."I get migrains..." I have no idea if a cluster headache is like a migrain, but I can not imagine it being as it is the absoulute worst pain I have ever encountered through my life, the worst being there is nothing that helps. I guess after reading some of the sories here on this page it has made me a little thankful that my episodes are only one time per year for about one month. The only question I have is what causes them? My doctor does not know...I will read on and try to find the answers.
Thanks for this site, it has helped me in more ways that you know.
Thanks for this web site. It is full of good information.
Hi everyone out there! My name is Julio and I started suffering with CH abt 6 years ago. The point is that my
CH is chronic and the only medicine which in fact helped
me was Predisone (cortisona) however I had to stop with it
because it have already affected my vision. I have tried all medicines that are known and none of them worked out and my alternative now is to try the radiofrequency rhizotomy which I am sure you guys know abt it which in order words in a lesion caused
by burning the nerve. The most likely side effect is
loss of sensibility in the pain side, therefore I have
decided to address this msg to you guys exactly to get further information from everyone who knows this procedure or even better for those that already tried this procedure and it will be quite interesting and helpful to guide by decision about to face this procedure or not.
Your comments would be much appreciated.
All the best/Julio
Back in 1977, I was in a car crash (while in the Navy). I began suffering with headaches while in the hospital, although not yet clusters. Late 1979 (after discharge) I got my first cluster. WOW! The pain is around my right eye which is where my injury was. The Navy denied any connection and said it was only a coincidence. So did all the neurologists I went to. I have found that if you need a doctor that knows about clusters, you need to see a specialist. It wasn't till I saw one (1998) that I was told that "my" clusters "were" trauma induced.
I suffered for almost 20 years of daily and nightly bouts of multiple clusters a day, up to 14 in one 24 hour period. I would scream, cry, and hit walls. One night I begged my wife to shoot and kill me, but she wouldn't...poor thing.
I have been taking Verapamil, Cafergot, and Eskalith twice a day for over 4 years and I haven't had a cluster "come on" in that long.
However, my sight is affected, and I'm sensative to heat and physical exertion. But, any sacrifice is bearable to stop the "pain".
I am a typical cluster headache sufferer (if there is such a thing.) I take the prescribed cocktail consisting of 10 L of O2, Verapamil, Lithium, ICE, and Cafergot. Cafergot is my lifesaver when abortig this hell. I have recently been told i am not allowed to take it anymore, which sucks. I have most of the characteristics: olive skin, hazel eyes, dark hair. This sucks! No other relative im ny family has ever had headaches. I am the first that I know of. I suffer from the typical migraine and migraines with aura's where I lose my vision when I am not cycling with clusters. My headaches are daily when i am not havng a cluster cycle. The worst part includes raising my children and working full time with these awful things. (My adolescent son has started experiencing migraines with aura's). I guess the best thing that has helped, besides Cafergot and O2, is ICE. I go to the ice rink where my sons play hockey and sit without a coat and a short sleeved shirt on and it really helps. Sometimes my nose bleeds. I have heard of a woman experiencing a "coma-like" state for two weeks as a result of her cluster h/a. Sometimes i do not think i will live past 50 due to this beast.
Great website. I believe I am in my first episode of cluster headaches. I fit the symptoms like a glove. They have been happening for 3 weeks steady now like an alarm clock every night. I go to sleep knowing I will wake up in a few hours with a piercing headache like I never felt before. Extremely frustrating. I am going to see my doctor.
Hi to all CH sufferers, If you live in Western Australia, particularly Perth, my friend Hans who has suffered chronic CH for many years would like to make contact with you. Two years ago he had to stop work because he had become too sick to continue but through much trial and error and careful observation has now developed a drug free method of controlling his CH and needs to compare notes with local sufferers - results will be shared with all eventually. Please make contact through my email mmarymac@yahoo.com if you live in Western Australia.
Regards, Mary
I have had Cluster headaches for about 32 years and still havent found much that helps. I get them about every three years and they last up to three months having 3 to 4 a day. I am 57 years old and just started a bout of headaches this month
Hi, I just found this website. My dad suffers from CH's, his had them for about four years. I can't believe there are so many people suffering from CH's! When he started first suffering from them it was really scary because we had no idea what it was. he since has seen a neurologist who prescribed O2, predinisone, verapamil, depakote. He takes them all but he has being having alot of attacks lately. We would love to hear from ya'll. Thanks
Hi ch'ers. Just found this site. Been to the Daimond headache clinic in Chicago 20 years ago. They put 21 bottles of histimine solution ,IV.That worked for a year. I won't take pharmacutcals any more,19 years. I take homeopathic Natrum Muriaticum 12c like candy. Got a tube in 5 places. It seems to help cut them off. I'm going to explore sleeping on a Neikken magnet pillow next. Also doing a kidney, then liver cleanse.Hope this gives you a path to try. I want to know the true cause. I suspect it's a past life thing. Silvia Browne Has a book on past life healing.Don't ever let the basturds get the best of you. I pretend like I dont have them when I'm 'off'. Hang in there.Sweet Dreams.
Hello everyone out there. I just stumbled across clusterheadaches.com yesterday and I am glad to see it !! Sorry, yes, that others deal with this "beast" but, it's good to see something like this for info or new meds or etc.. I've been dealing with them for over 20 yrs now. They usually last 4-8 wks being at least 1 but usually 2-4 per 24 hr period then they just go away for any where from 8 or 9 months or even up to 1 1/2 yrs. The best meds I've found to work is the combination of cafergot, depakote, oxygen and, narcodics. I take depakote daily every day. I take cafergot and vicodin or vicoprofen at onset along with the oxygen. But, even with all this, they still wear me out for at least 20-30 mins before subsiding any (providing all meds are readily available and taken imediately). I've even heard a college professor talk of marijuana smoking for relief. It worked o.k. but as soon as buzz was gone geuss what what's back with a vengance ?.. Anyway, I will look forward to reading more of other's stories and antidotes. Hopefully somebody,somewhere will come up with a more pro-active, consistant, broadly effective medication. (I geuss that's dreaming or stretching hope a little, huh ?) Thanks for your time. God Bless !
Have had at least 2 headaches per day since middle of June. Had Ct scan to rule out brain tumor (which is what it feels like)& sinus problems. I have all of the classic symptoms of CH so I have diagnosed myself! I hate taking any drugs for this condition because I have a small child & a teenager to care for. Any suggestions for natural type remedies & when will these headaches stop????
Hi! I have been watching this site now for about 3 months- I have a friend who is dealing with CH. I'd like to think I can help him- that I can even say, honestly, that I know what he is going through- fact of the matter is, I can't help eliminate his pain, and I guess I really can't know just how bad it really is. When I read the posts, there is a strong thread that goes through each and every one of them- CH people must have an incredible sense of humor- sometimes I cry about what I read, other times I'm rolling on the floor with laughter. I admire everyone on this site, and I am sorry for your pain, but I know my friend wants no pity at all, so, to all of the people whose posts I've read, and to those I have yet to meet, who deal with this monster, I wish you peace, pain-free days and nights, and someone to stand by you always.
i am a sufferer and know too well the excrutiating pain a ch gives you only been diagnosed for 2 years but been suffering for about 10 years doctors know little about this condition and keep giving me drugs that are for migraine nothing as worked as yet only get them once a year for about 6 weeks at a time dont know how people live with them happening all the time ive had 4 children and would rather go through childbirth than this it seems never ending once they start and they control your life darn"t have a drink socially scared of one happening is the ever gonna be a end to this or does it get worse and do you think i might be able to go see a doctor without him her thinking i"ve only got an headache and wasting their time it is nice to know that other people do suffer the same that sounds awful but it"s nice to know you"re not alone thanx for listening joanne
I have had cluster headaches long before I had a name for them. I started having them in my early twenties and I am 50 plus and still have them. The only thing that has helped me that I've tried is Verapamil and an icepack. Before I took Verapamil, I would cry and bang my head on the wall. I had cluster type and they became chronic and I thought that I would go crazy. It took all types of tests and medication before I could get any relief. It is so good to find a web site that talks about it. Also my daughter has cluster headaches which I guess is uncommon. I have a question if anyone knows, I also have problems with Meniers Disease which affects your balance, hearing and ear. It is one sided also and it is on the same side that the cluster headaches are on. I get Migraines occassionally and also same side. Is this a fluke or does anyone know???
I was amazed that I was not alone. I've heard them called suicide headaches. Everything I've read on this site I can identify with. I can feel mine come on with a tightening and burning behind my left eye. I dread going to bed because I'm afraid of the headache boogieman coming to beat me in the head once again. I'm going to lurk and read up before I participate.....Charlie
I began suffering with this particular migraine 6 years ago,and haven't gotten rid of it since. I was diagnosed with chronic cluster migraines. I have been to some of the top clinics for migraines, and was dumb enough to try going cold turkey with no meds for a year on the advice of a pain mgmt doctor who told me to walk when it hurt. Well it hurt all the time!!! This "disease" as I fondly call it has taken over my life, and destroyed parts of it too. The pain is unbearable, but what is more unbearable to me is the fact that I have "lost" 6 years of my childrens lives. They won't remember me as the fun mom who baked cookies--I'm the mom who bought the neat cookies, and stayed in bed all day. I just want my life back. The Botox injections along with 75 uc/g of duragesic, effexor, anxiety and nerve medications keep me going, and I feel better than I have in a long time, but I'm still cranky, angry, and hurting which I can't control 75% of the time, the pain NEVER GOES AWAY!! People around us say they understand, or I don't know how you do it, but they have no idea. Frankly I wouldn't wish this on even my worst enemy--if I had one. For those of you who only get the headaches periodically, at least you still have a chance at life---appreciate that. I am not down playing your headaches, not at all, I just wish that I could have time without a headache.
hi, on the message board its say to meet other cluster heads in sept. but when you click on it its a 404 errordoes anyone know know where it is or anything thing about it let me know by e-mail *thanks karen
hi, on the message board its say to meet other cluster heads in sept. but when you click on it its a 404 errordoes anyone know know where it is or anything thing about it let me know by e-mail *thanks karen
Hello, fellow clusterheads! It amazes me that I have lived with CH for just short of 30 years and have never even spoken to someone who *knows* someone who also rassles the beast. Just knowing there are people around who understand that these are not "just headaches" makes my life easier. I had my first CH episode when I was 14 years old but was not, of course, diagnosed at that time. I didn't have another episode until 10 years later. After being diagnosed with the usual CH imposters (sinus headache, trigeminal neuralgia, etc.) over the 4 month course of daily headaches, my doctors finally diagnosed CH just as the episode was ending. (I have to mention here that they were remarkable family practitioners, in that they did not hesitate to take another tack when I told them their diagnosis/treatment was not working. None of that, "You haven't given it enough time" crap.) I've been very fortunate with medication, for the most part, achieving total remission with 480 mg of verapamil until my current episode. Now I suppose my--uh, *maturity* is catching up with me, and the headaches have been breaking through at 480. Don't have a neuro with my HMO yet, and my GP advised that I don't increase my dosage, but since I have no existing heart trouble or blood pressure problems, I recently increased my dosage to 720 mg daily. Yesterday I spent the afternoon in urgent care, frightening all of the senior citizens in the waiting room by banging my head on the registration desk. (Strangely, no one sat near me even in the very crowded room!) Had my first injection of Imitrex and came home with 10 tablets, enough to get me through tomorrow, I guess. I got the customary "you're just looking for narcotics" quiz from the UC doctor. Pshaw...narcotics are for people with sissy pain. I'm hoping the verapamil increase works, because if it doesn't, I'll have to start considering trepanation again. Danged evil spirits anyway! Hope I'll get to meet some of you soon. Sorry for your pain, but I am surely glad to know you're out there.
Hi, What a great site. I am a 54 male and have CH since I was 9. It wasn't diagnosed until I was 42 I was told by GPs that I had acute sinusitis, trigeminal neuralgia, classical migraine, and too many polyps, so I was prescirbed vibromycin, tegretol, all the migraine preparations and had surgery to remove my nasal septum ( the joke was that after the operation) I woke up with a CH. Whe I was 42 a coleague who had been a migraine sufferer for years and had since researched headaches, advised me to go to the Princess Margaret Migraine Clinic in Charing Cross Hospital. Off I went and was diagnosed CH, they gave me Li which was useless, but O2 at a high flow rate which was marvellous. After taking a brief case history,I informed them that I had an identical twin who also suffered from CH. We featured in 'The Lancet'as the first identical twins in the world to be identified with CH. I just wish that I could be famous for something else.
Im tired and I dont want this to happen to me. Im 23 and I have headaches one week out of the year. I dont plan on dying before 80. That leaves about 57 more weeks of headaches, about 850 more headaches. And I know that I will have one tonight at 8pm and another at 5am and that makes me so tired.
Hi,
I am a young 65 year old, that developed CH about 10 years ago. I was turned on to Feverfew,( which worked right away),and continued to for 8 years. Got the little darling again about 3 months ago. Really don't want to get hooked on RX drugs, none of them have worked for me anyway. I am tired of dancing, and hangover from the beast. My beast comes at 2AM without fail. So there I am at 2AM in my little white chariot (bathtub) drowning myself in hot water. Icebag worked before, but, makes it worse now. One of the post mentions Feverfew, Magnesium ,and Glucosamine, on my way to get the latter two and try them. I love you all, and pray that one day we can all look back at this Devil, and laugh.
Through pain, tears, and more paaaaaaaaaaaaaain.
God Bless, Karen
Wish I didn't belong to this particular group, (or any of you, either, fellow sufferers!) but it is comforting to see so many others that understand. I've lived with migraines for over twenty years, and thought that that was bad enough. I started getting Clusters almost nine years ago. Thank you for this site. So many stories and advice! Here's hoping we are all headache free someday! Best wishes to you all.
I was 20 years old when I first started getting these CH but I didn't know what it was.I am now 44 years old and I get them in July and September every year except this one it has shifted to August and for some reason these have been the worst. Usually 5 times a day.
When I first started getting them I went to many doctors and it was always diagnosed as a sinus headache or infection. I was prescribed various painkillers but nothing worked except a aspirin and codeine mix however that only worked for a couple of years. When I had an attack of the beast I would fill up on any painkiller that was in the cupboard knowing full well that it wouldn't work but had to try anyhow.
3 years ago I went to a doctor for another reason and at the end of the appoitment he asked if I had any others problems and I jokingly said "Can you do anything about a headache I've been getting for 20 years"
He asked me about it and I told him the story and he said has anyone ever mentioned CH. I said no and he knew about them as he was a sufferer as well. Thank God I found someone who knew what the hell I was going thru. He prescribed me Imigran Nasal and I haven't looked back.
Sometimes the Imigarn works and sometimes it doesn't but it has saved my life
thanks for this site
Hi all. I thought I was all alone. I have been getting cluster headaches since I was 13 years old. Im 29 now and I have found a doctor that knows what im talking about. The pain is so bad and I feel like im going to die sometimes. Im just comeing out of a really bad cycle. Im on O2 now and that seems to help. Some times a very hot shower helps to distract the pain for a second or two but I mostly just burn myself. This site has been a huge help to me and my local doctor. I have missed so much life because of these headaches. I have lost freinds and loves. I get my headaches every summer and fall. People I work with think they are not real and think I just like staying home from work. They are starting to understand a little I think. Any way im glad for this site and I hope that these headaches stop some day. I hate spending so much time in pain or waiting for the pain to come. Its like we are being punished for crimes we have not commited. I hope all of you sleep good tonight and have a pian free tomorrow. Take care all.
Is it true that 0.1% of the population suffer from clusterheadaches?? I read that somewhere, and if so....that is a lot of people! Considering the US has lets say 200,000,000 people that would be 200,000 sufferrers. My guess is that not enough research goes into this disorder because it does not kill (directly), such as cancer or aids, etc. Any opinions?
I just got O2 from my nuero yesterday. I think it helps. I just find it funny that I have tanks of gas laying around the apartment with a a thing to plug in your nose. I am 29 and I feel like an 87 yr old. Of course CHs are no joking manner. I hope more research will go into finding out more about this disease, cures, etc. There ia way too much that we don't understand.
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