Below are the guestbook entries from January 2001. Thank you for your continued active involvement in this site and keep those guestbook entries coming!
Click Here to go back to the Main Guestbooki have had ch's for four years now with several sets of the cycles.the spot that causes the pain feels no bigger than a pea, but it brings me to my knees. my daydreams are of cracking my skull and pulling it out. i am currently running another course of predisone with sansert. and of course theres the imitrex and oxygen if it gets away from me. i see the doc next week and im thinking of trying verapamil. has anyone had sucsess with this drug?
jeremy <firstname.lastname@example.org >
bend, or USA
Wednesday, January 31, 2001 at 20:26:04 (EST)
I have suffered from cluster headaches chronically for about a year now. I have tried every medication, scheme, and anticdote to rid myself of these headaches, to no avail. I sympathise with anyone who suffers from or lives someone who has these horribly painful experiences on a regular basis.
I've had cluster & migraine headaches for over 30 years. Some times I've packed my head in ice to freeze the pain. The real bad ones for over two weeks take demerol to stop. It feels like a new world when they stop and the pain only leaves the right side of my head feeling like it weas a punching bag. Some of the short cluster headaches slow down by mixing two teaspoons of instant coffee in hot water. It may take several cups. Messes up yuour stomach if you do it to often. Jerry Nelson 10/31/2001.
I have had CHs for about 6+ years. I just stumbled upon this website,
and I am very excited. I hope to be able to communicate with other
sufferers of CH to see if maybe they tried something I haven't that worked
for them. For a while I felt like a drug addict because of the so many
different meds I was taking as preventatives and pain killers. I am currently
not taking any meds because my body is exausted from them. I look forward to
sharing my experiences with you.
I got my first cluster headache three weeks ago. A friend gave me an OxyContin, and I didn't get one for a week. But then, last Tuesday, they started for real. Every day, at least 2 per day.
I have been taking Ultram, which only masks the pain, it is still there, still killing me.
I am young with a successful future in my trade, which happens to be politics. I graduated from a great school and grew up in a successful family.
I was pleasantly suprised to learn that I didn't have an anyurism or tumor. But CH seem more deadly then either of those. I simply cannot accept people thinking I am crazy, and I simply cannot deal with the pain day, after day, after day.
Will it ever stop????!!!!!
I don't think I will see tomorrow. My head wants me to release the pressure. Now.
What a wonderful site! It is good to know this web site is here, and that I'm not the only person suffering with this crazy condition. I started my first bout with cluster headaches just about 4 weeks ago, December 22, 2000 to be exact. Since then I've been to my primary care physician 4 times and the emergency room once. It was the er physician that diagnosed cluster headaches. Hell, my primary physician did not know anything about cluster headaches! I sat in her office for 1/2 hour this last time while I am sure she was looking on the internet for a treatment. She prescribed prednisone, a beta blocker, and Cafergot. I've been taking these for one week now and they seem to be helping. Although I still get the headaches they not as severe, at least I haven't had to go back to the emergency room. Had another headache today, wasn't to bad, but it seems the pressure in my head is never completely gone. I think my Boss at work, and others probably think I'm nuts. This whole thing just seems to weird, even to me! I used to think people with cronic headaches were off their rockers, now I know better.
Hi, I'm 40 years old, and ben having the clusters for about 12 years. Diagnosed as having clusters only 3 years ago. Been thru a regular Doctor, a specialist, and family Doctor for these debilitating headaches. Finally, after reading on the WWW, found out about IMITREX (yahoo) and SANSERT. The Sansert does keep me pain free (totally),but the drawback is that one cannot stay on it indefinitely. So, on my "off" times I need Imitrex, and lots of it. I mostly use the nasal inhaler (quick react time), and take pills before bed to stave of the nightly attack. I'm presently in the middle of my "rest" period off Sansert, so suffering from 3-4 of these beautys a day. VERY glad to see that there's a place for us Clusterheads to go, as NO ONE else understands the pain we go thru when having one of these. Glad to be here
Browsing the web I find this page! I am so glad to find out
I'm not alone. I am now 22 years old. I started having these
incredible headaches when I was 19. The doctors told me that
I was experiencing stress. After a while I began to have a
growing pain on the left side of my face. They then told me
that I had a cold. After 8 months my doctor finally sent me to an
a neurologist. He told me that I probably had a tumor. After waiting
for 3 weeks for the results he reassured me that I didn't
have a tumor. I had clusterheadaches.
I don't know anyone here that has the same condition. I am glad to find out that
there are more people like me.
I dont even no if what i have is cluster headache, but for sure it is driving me mad, and am very worried that it could be a serious thing such as brain tumor, it feels very wrong to have 2/3 really painful headaches every single day. This has been now happening for the last 5 weeks, the doctor gave me some pills but they have had no effect, I dont no what i will do if they continue, i really cannot handle this pain, and to top it off i'm meant to be doing a 10 0000 word dissertation. Sorry i sound like someone who feels sorry for themselves, well i do!!
any advice would be so much appreciated.
I have been suffering with CH for almost 10 years. I had been in remission for a few years and started a bout a few days ago. This bout is new. I have had attacks during the day for the first time, and I also have lingering pain on the right side of my face most of the time. I've had teeth pulled, seen a neuologist, internist, chiropractor, napropath, acupuncturist, and others. No one ever suggested I had CH. I am convince reading this site. I find great relief by eliminating all alcohol, sulfites, MSG and nitrates from my diet. Many times the attacks are less severe or don't happen at all. I would still like to have some proven medication when all else fails. Thank you for providing this site.
Hello everyone, I have had clusters for about 5 years, I am in an episode now just looking for relief and trying to find someone that knows about the pain. THANKS!
I feel a little better just knowing what the probblem I have is. I was starting to get worried about these headaches waking me up in the night. I am leased that I have found this site and happy that I am no longer alone.
Hi I have had clusters for about 16 years. They wake me out of a sound sleep and stab stab stab til they peek and go away. I am in another cycle I usually have 1/1/2 or 2 years between the cycles. I have tried just about everything. Im trying to cope for my familys sake as well as mine. My wife found this site and she types better than me so she will probably resond more.Thanks
There was a reason I found this web site today. Thank God. I thought I was the only person out there suffering. 30 years of this pain I thought no one else could understand. It's an answer to prayer that I can at least know someone who can appreciate what it's like. Thank you.
Thank God, I came across you page, being a woman sufferer, I was glad to hear I wasn't alone
Just like to say hello to all the CH sufferes out there.We can all hope that they will go away and we can start getting our lives back together.
Good luck to all
i'm a cluster sufferer-at times I almost committed suicide. What a horrible pain to have to deal with!!
I was so happy when I found this site I have been alone dealing with this for so long. I started getting CH when I was 17yrs old now 30 yrs old. they came evey 2 years up until I started having babies then it stopped for 7 whole years and now my youngest is 1 yrs old they have come back stronger than ever. I know hopefully have a doctor that wants to treat me, I just started calan sr 240mg today and on a low dose of pred 20mg daily and oxygen which seems to work 80% of time takes about 20 mins though feels like forever. I am tired of this they started again jan 1st '01. what a way to start the new year!! I would love to hear from some fellow suffers of this awful thing, thanks for all being here.
I use to have cluster headeach and as my english is not very good, I would like only to said that I'am thinking of all people who actually suffer from this headeach I know it is very difficult to leave and to work with this handicap
and i'm happu to said you that " Cortisone" has take this problem out of my life in 15 days.
J'ai l'habitude de souffir régulièrement du "cluster headeach" et je pense à tous ceux qui en souffrent actuellement. Je suis heureux de vous informer que j'ai réussi à m'en débarasser en moins de 15 jours grâce à la cortisone.
Quelle joie d'avoir un médecin comme le mien alors que ma crise précedente avait duré environ 6 mois et avait complètement rendu ma vie insupportable et était un réel handicap pour travailler.
Merci à mon médecin.
Georges. e-mail = email@example.com
Diagnosed recently,attacks began shortly after a neck injury
coincidence or catalyst? not sure at this point as i learn more about this nightmare i realize i was falsely diagnosed with migranes 5 yrs ago. up until 3 wks ago i was free.
Verapamil/prednisone reduced my frequency of attacks but imitrex nasal spray does nothing for me. my attacks are coming during working hours as well does anyone know of an effective treatment that can stop or reduce pain enough to continue working.
Thank God! People that understand the hell I live in. This may sound crazy but I love you all. I have always felt alone and misunderstood. People would say, " It's just headaches". Yea Right Morons!!!! I wish the best for you all and I hope you don't have a "headache" today.
I have had three series of cluster headaches. The most recient has been going on for about a week. About a month ago I increased my Vioxx dosage from 25mg/day to 50mg/day. I don't know if there is any connection or not, but it's the only change that I can think of. Anyone else having trouble after starting or increasing Vioxx?
My husband has just been told he's suffering from cluster headaches.
Does anyone have any tips on pain relief / preventative measures / etc?
I am writing on behalf of my husband. He has had clusters for 23 years. Currently his verapamil is not working. He was taking so much imitrex and oxygen that he dedided to try prednisone. Now his hip hurts so he is getting off the prednisone, and of course the headaches are back. He had been on 40 mg of prednisone for 7 days. Could the hip pain really be from the prednisone. How can you tell?
Any info will be appreciated.
I amgoing through a bad attack period right now.
It would be nice to interract with fellow sufferers.
Bye, get in touch.
I've had CH since 1976.At times I have been down on the floor moaning. The worst was 24-hours of pain.In 1982 I found a Neurologist who prescibed Lithium. I still have CH but they are milder and of shorter duration. I can only describe the pain to non-CH'ers as a non-stop ice cream headache.I do get some relief by holding cold water in my cheek on the affected side or standing in a cold drizzle. Afterwards - total exhaustion.
Hi, hope you have room for one more. I'm female, 37 and I've had them since I was 13.
I've been looking over this site for a couple of weeks now. I have been suffering from CH for approximately 18 years. I've tried different meds, but I've been on Verapamil the longest period of time, which seems to keep the beast away the longest period of time. Prior to now, I haven't had any headaches for 2 1/2 years. I am now on my longest bout with these for 3 months. They usually last 6-8 weeks. Lately they haven't been extremly painful, but they wake me up about an hour or so after falling asleep - two of them in a night and about two or three evenings per week. I'm very tired all the time and it's tuff getting up for work the next morning. The question I would like to know Ñ does anyone go from being episodic to chronic very often? Your thoughts on that would be appreciated.
Hi I have had headaches on and off for years (migraines) but since Sept. last year have been getting ones that last 4/5/6 days, easing a bit at times then back it comes. My GP just tells me its my normal migraines and i am not really having it that long. I never knew about Cluster headaches - I thought i was going mad, and my poor husband has been convinced I was dying of a brain tumor. Thanks for being there.
Hi Everyone! I've just come to the end(I hope)of a particularly bad bout of cluster headaches, decided to search the web for info. on this horrible phenomenon, and found this site.I've had them since I started work at 18
(25 yrs.ago) in bouts of 2-3 attacks per day over a 2-3 week period every 2-3 years.No doctor that I've seen has actually told me that I suffer from cluster headaches, it's normally migraine that is diagnosed but after doing some research and reading the descriptions on this site I'm in no doubt what they are. I am normally prescribed a course of beta-blockers, 4x40mg propranolol daily for 4 weeks and 50mg Imigran to fend off an attack. Imigran in my experience actually works if I take it just as the attack comes on otherwise it's a waste of time.
I've no idea what triggers these bouts and I now keep a diary in an effort to identify potential causes.
For now,anyway, I can sleep easy until the next cycle.
pl give me more information
I've had them for 21 years. I've averaged 4 clusters a years lasting thirty days each time. I appear to be trailing off, and only had one cluster in the last 11 months. Maybe I'm finally done? :)
Hi! Have been recently (3 days) ago diagnosed with cluster headaches which I had never heard a thing about - I had an abnormal CT scan after months of periodic headaches and am now scheduled for an MRI ( tommorow) Has anyone ever had an abnomal CT scan which had any connection to a diagnosis of CH? My meds have already been changed once in three days!
Great Site, I would like to complain about my CH but after reading some of the messages, my CH are mild compared to some of you. I had been CH free for about 10 years, until late November when they returned with a vengence, making up for all the time they absent. I think I have seen Doctors more in the last six weeks than I have all of my Adult life. Luckily I have a good doctor who is up on the latest Medical Information and has prescribed some good drugs that really help me and now to prevent the CH. Good luck everyone, I'll be checking back daily to learn more. Dean
I had suffered from cluster migraines for many years trying all of the noted treatments with the same minimal success and then finally after a surgery to fix a ruptured disc high in my neck, my migraines disappeared. Or so I thought.
I normally would get them once a year and they would last 3-5 weeks on average. AFter the surgery, i went nearly six years before all of a sudden, I got blasted all over again. These seem evem more intense than before but it may well be that time has dulled my memory. Fortunately, there are now new medications and my doctor was quick to put me on imitrex since I cannot tolerate prednisone. I am only two weeks into this bout of headaches but the imitrex nasal injestion seems to work well since it is not intended to be inhaled as a normal nasal spray. I would also like to note that if you have true cluster migraines, mild physical exercise does tend to help but I have only been able to use this approach if attempted in the early stages. I have never figured out how to break or shorten the cycle which I think is as big an issue as trying to find out how to deal with the pain once you have it. What blows my mind is how repetitive they are....in my case they repeat at approximately 12:30/12:45 in the morning.
Hello. I'm also a fellow sufferer of CH's and happy to find this site the other night.
I've had CH's for about 20 years, but didn't know that's what I had until about
three years ago. Since then I've been on Oxygen, but now it's not working as
effectively as it used to. Have another appt. with my Neuro on the 30th, we'll
see what he says. Right now I'm trying the water. Good luck to everyone...I feel
I have been suffering with migraine headaches for over 23 years now. I take Inderal (160mg/day) as a preventative but I still get constant headaches. I am now using Imitrex injections to help try to stop the pain. Sometimes it works but I usually feel strange due to the side effects of the shots. I am going through a two week period of straight migraines every day. I have had 9 headaches in 13 days... one lasting over 52 hours. My Dr. has put me on prednesone (a steroid used to reduce swelling). I have been OK for 2 days so far. Maybe this medication will help break this string. I do, however, feel depression and anxiety since I started this medication. It is a side effect that is more desireable than having the headaches so I will deal with it. I hope that this posting may help someone who is suffering and looking for help. People who do not get Clusters or Migraines do not know the intense suffering that we go through. I know what you are going through and I know how much it hurts. Hang in there everyone!
I'm 53, started my clusters at 21 in 1968 after returning from Viet Nam. I suffered for 20 years, every year, between October and February. In 1988 I went to a Headache Clinic in Baltimore (Dr. Speed) where he perscribed lithium and a blood pressure medication. After a week the clusters were gone. I have been headache free for 13 years untill a week ago when they started again. Hope progress has been made by the medical community -- understanding they are real.
I found all of you 6 days ago, and man what a way to meet some of the best people this planet has to offer! I'm 35 and was diod. with Clusters weeks after uncle sam shot me full of meds. to go fight the gulf war. I thought that may have been the cause, now I'm not sure. As I sit here reading My emotions are going wild ie...tears,lump in throat like a baby. I'm so sorry that there are so many going through what I go through. Cluster's truely are HELL on earth! This cluster started 12-30-00 4-7 a day. Like alot of you the most intense at night. (R eye,R nostril,eagle talons R side mouth and teeth)30 min.- 2 hours each. I try to think of people out there that go through life from a wheel chair or with out limbs or even worse yet kids that are being abused to help me keep the easy thought of death out of my mind. I wish I had something useful to offer all of you, but like you all, one of the best meds. I"ve found is right here. I was truely touched that Steve is going to give up some of his Imitrex to someone he dosent know. We all know how important this drug really is to clusterheads, So Steve God bless you! You are the reason I'm writing today. "Wendy"my wife too can do nothing but watch me suffer so your not alone by any means. With no medication the best thing you can do for your husband during a cluster is leave him be or get him what ever he asks for,Thats what my wife does. I'm wishing you all well.
I'm the Mommy of a 9 year old who's now suffering a combination of CH & Migraines due to a freak accident and emergency Brain sugery. He's a wonderful child and we need all the help we can receive to understand his "brain sucker" His name for these. I posted our story on the message board. I need to go, he just started screaming and running ... you know what this means. thank you Heidi
I have suffered every two years for 16 years and the attacks seem to get worse each time. I'm just getting warnings in the last couple of days that another lot is on the way. Wish me luck!!!!!!! Last time lasted 5 months !
I have been suffering for six years and only in the last two years have I been diagnosed with Cluster Headache. I am still trying to understand what this is all about and how best to treat it. I have been under the care of a neuro for the last year and have tried sansert and am now on verapimil. Still looking for relief!!!
I must reitterate what so many people have said and say "thank GOD I found this site!". I recovered from my first bout about two months ago. I only discovered about 1 month into the cycle, what was going on. My Gp didn't help much, and being a student, I can't afford any of this hectic migrane medication. I also don't have a medical aid plan, and many of those that do exist down here in darkest Africa, don't seem to recognise cluster headaches as a condition for which they will cover treatment!!!! Are there options out there which won't break the bank? Reading this site, it seems likely that now that one cycle has happened, I can expect more? I lost two months of my life and work to this condition, which I was powerless to treat, I couldn't bear the thought of it happening again, but hey...such is life!
Here's wishing you all a pain-free existance.
Stay positive - medicine's moving fast these days!
Hello to the other suffer's out there. I been through 5 major back fussions with know luck on solving my back problems. I once had a doctor who punctured my spinial fluid and caused a major headache, that lasted a couple of days. But the headache I've got know and have had since November is a real killer. I'm 100% disabled due to my back and the pain medication they give me for my back doesn't even slow this one down.It's a constant headache that gets worse at dark, and on rainy days. The headache is located behind my right ear at the 10 to 11 o'clock position. I seen several E.N.T.'s with know luck, they just want to put me on some type of antibotic to try and clear up a sinus problem, with know luck It hurts so bad at times that I've concidered taking my life but thats when the face of my new born son will appear and give me the reason for going on. I'm to see a new ENT soon and pray to god he can give me some relife. Any Help will surely be concidered.
To All: It's nice to know their are others out there. I've been going thru these since 1985 I was about 27. My wife can attest to the agony. I think mine started as a result of diving off a boat in to a sandbar which kind compressed my neck, I had been Drinking go figure. Your wild and bullet proof at that age. My story is kind of weird but here goes, Since 1985 usually in the fall I have had these head aches. All that I have read today I have the classic symptoms. The odd thing though is they have only occured in odd years, 87,89,91 and so on. I've had all the battery of test Cat scans, MRI's etc I thought I was going to die. All the doctors could do was medicate. I new more about Imtrex and all the common stuff than my than my Docter did. Imtrex That stuff made me feel like the jolly green giant grabbed my by chest then put me thru one of those old fashion cloths ringers just terrible.Took it only once.
I started to look for a physical cause Like My neck and went to see a cyropracter. My neck was screwed up but after acouple cracks I noticed my headaches were gone, once I left work in 93 with a daytime one which was unusal because I generally get them at night. A few cracks Headache gone.
1999 was headache free and I thought woopy I'm free... well there back. I fell down the stairs back in november thats a big deal for a 200lb man scared the begebees out of my family and now there back starting 12/30/99. Last night I had 7 bangers no sleep and right now I'm fried missed work. I Saw my Priamary Care Dr last friday he's the forth one Ive had to tell this story to. I asked him to write a script for the practer and have had four visits, My neck is still a mess and after being cracked it's sore so I use Ice. What My routine is now is take 1 or 2 Amdrine capsuals
get in the shower hot very hot in the dark for about 15 to 20 mins. One night last week I ran my 40 gallon tank out three times, After sampooing i use condioner and then give my self scalp massage working toward my neck. I do my best to try and stay calm belive me I have banged my head on the wall then I just have to patch the wall later. I have found that even though the pain is behind my right eye that the neck is were the pain seems to come from. From the shower come s the ice bag to the neck temple forehead I also found a pressure point in my neck last night that helped. I think I'm on the downward slide side of the hill. When all else fails Zanax period... But thats not good either whenn you wake up with a banger and have a hard time getting to the medicine bottle. I hope tonight I'll get some sleep amd be able to get to work. Again it's nice to know there are others like me out there. I think I left My E mail address if anyone would like to respond you are welcome.dc
Thank god I have found this site!! What a relief. I am 27 and a chronic sufferer and have had the blasted things since I was 18. For the past 2 years I have been on Verapamil which has worked brilliantly at preventing my attacks (3 times a day for at least 1 hour) although every now and then it stops working and I have to up the dose. I now take more than twice the maximum prescription dose which is sending my doctor's blood pressure soaring (ha ha - for those who don't know about Verapamil - it makes your blood pressure drop!!). I am going through a bad patch again at the moment - 5 or 6 weeks so far and am exhausted. This time I have been relatively lucky as have generally only had 1 or 2 attacks a day. Anyway - don't know what else to say here but let's just all drink (water) to the future - maybe someone somewhere can help us all (that's a point - isn't Bill Gates meant to be giving loads of money to charity - could we not contact him or at least send him a link to the site - for those of you in the UK - Chris Evans is said to be donating about 10 million - could we not get some of it to go to Cluster research?). Let me know via my e-mail what you think. Thanks again for letting this site exist!!
This is my first experience with CH. My neurologist referred me to
this page and I have been "soaking" it up ever since.
I have been relieved to find that I am not alone. I have been
terrified for days, thinking I was going to die. I characterize my headaches
as Drinking a Malt Through a Straw Too Fast.
Just good to know you are there.
I just found this site while looking for help for my husband. He suffers CH in the 8-10 zone for very long cycles.It is only in the last couple of weeks, that we have determined that his headaches were not migraine, but really CH. He had seen a doctor, who diagnosed migraine, gave him Fiorinal and sent him on his way last year. It really didn't help him. Now, we are beginning to understand why.
It has been good for him to see that he is not alone with the severity of the pain, the screaming,head banging,thrashing about, well... you all know what happens.
I have suffered from this dreaded condition for 8 years now. I get about 3-4 attacks a day, with one or 2 in the we3e hours of the am. Have had 3 breaks where it went away. Once for 2 years, once for 6 months and once for 2 months. Have tried Verapimil which worked for a while. Indocine used to be good, if you took it at the first indication of an attack, but recently has only served to keep it at a more than dull roar. Oxygen used to be great, but recently works like Indocine. Was taking 3600 mg (1200 mg 3X a day) of Neurontin and it was fantastic. After about a year my neurosurgeon reduced to 2700 mg ( 900 3x a day). After my last hiatus from the attacks I weaned myself off it. When the attacks started coming back Started taking again in graduated stages to get back up to 3600 mg. Currently, I am using the neurontin, indocine and oxygen to keep them at the dull roar. At least I am not experiencing the full blown attacks, but they are still severely interfering with my peace of mind.
Hello fellow suffferers. I was wondering if any body can think about what is going on in their lives when their clusters start. In my past it seems that there is some change in my life when my clusters start. It seems when some emotional change occurs is when mine start. Maybe this is all in my head. HA HA Looking for any feedback on this. Hang in there. TE
Hi there. I am 53 yr old white male, non-smoker non-drinker. Have had clusters since age 25 - was properly diagnosed back in the dark ages! In recent years clusters evolved into daily-for-months. I have been able to control by aborting with ergotamine tartrate and hydrocodone, sometimes diazepine. Sometimes Oxygen if I get to it soon enough. I found this site because I do not respond to sumatriptin (other than too expensive nasal spray) but have successfully used "Wigraine" or other ergot/caffeine formulations for years. Now pharmas appear to be discontinuing, my drug store says can't get. Who still makes these formulations; I am sure someone must!
For many years awareness of possible clusters has almost controlled my life, but I learned to work around it, mostly by avoiding triggers (a beer on a sunny day...) but also by aborting them early so that I don't have to bomb them with meds later. Lots of people now claim to have clusters, but I don't think they feel that someone is sticking a white hot poker through one eye! I have classical symptoms but atypical timing. I am afraid not to have meds available, and I try almost everything that comes out. Is there something equivalent to the nasal form of sumatriptin that does not cost both arms and a leg?
Any response will be most welcome. Thanks in advance.
Hello Fellow Sufferers,
Just got back from the neurologist again...... This time they say take Paxil for 6 months - forever. Paxil does seem to effect seratonin levels or so I read. I was wondering if any of you might know any more about treatment/Paxil???
I have been a migraine sufferer for the past 30 years. I was diagnosed as a child. At age 28 I started suffering from a more intense, episodic headache. I would awake from a sound sleep screaming in pain. Convinced I had a brain tumor I went through all kinds of tests. How could a person have numerous headaches daily for 6 weeks straight? I was diagnosed with cluster headaches. I now suffer from a few episodes a year. It seems they intensify with each new day. I have been prescribed numerous pain killers such as fiorinal, esjig, midrin, imitrex and now zomig. Nothing totally relieves the pain during an attack. My children can't understand how I can not function during an attack and why they last day after day. I feel so helpless. My headaches either start in my left eye (it feels like someone is stabbing me with an ice pick) or in my nostril where I suddenly feel cracking and pressure. Within minutes I am in severe pain. The headache can last a few hours and then be gone but usually comes back in a few hours. This cycle is repeated daily anywhere from 2-6 weeks with the last day usually being the "grand finale",the headache of all headaches. For days afterwards I am not myself. I have friends who suffer from migraines but I know nobody who suffers from cluster headaches. I was happy to find this website. I guess misery enjoys company. I am writing this letter now in the midst of one of my episodes. I feel okay at the moment but it is only a matter of time before the next one hits so I would appreciate any feedback. Thanks.
I just want to say i can relate to all you clusterheads i to am a clusterheadache sufferer.Its a lousy way to live ,ive been getting 3 to 5 a day in the this last 2 week cycle.And not getting much support from my doctor.
was wondering if anyone has done a survey yet to see if the climate we live in affects the number of headaches a person has? In other words does it do any good to move to another climate?
i just wanted to say that i think you people are the most powerful people in the world, i'm 14 and my father suffers from cluster headaches...he has the same problems as all of you, i found this site for my father because i'm really worried about him and i love him very very much and i hate to see him suffer, i feel for all of you and hope one day they have a cure for this terrible headache, GOD BLESS all of you...i hope you ger better ... i really do
Hi everybody! My name is Danny and I've had cluster headaches for about 6 years now. I've been on Imitrex forever and I feel like I'm getting immune or something. To top it all off, I seem to be increasing the number of "sessions" every year. I'm going through a phase right now when it is normally reserved to June and October every year. It's really comforting to see that other people realize that this is by far the worst pain imaginable. Thank you everyone, this is truly the only comfort I have, knowing that I'm not alone. I'm 23 years old now and have been going through this since I was 17. Everyone I know is always puzzled when I tell them that I have cluster headaches. No one seems to know what it is. It only recently occurred to me that I should check the web for some new remedies because I'm sick of taking alleve and imitrex everyday for two weeks. It's good to be part of the group.
I have been suffering from cluster headaches for the last 2-3 years. I've had all kinds of tests done and they've found nothing. They say I'm healthy as can be. I recently found this site and it feels like my only relief. All this information is great but you know what, none of it is any good when I'm getting my cluster's and no one can tell me WHY?
It has not been diangosed, but from reading the information
in this site, I am sure the doctor will diagnose Cluster
Headaches. It is nice to know that we are not alone in
this battle. Nicole
ExcedrinPM!!! Take 2 & 1/2. It is the only thing that got me to sleep in days. I have also recently started Topamax which seems to be helping break my cycle but makes me spacey and tired.
fellow sufferer since 16
Let first say how happy I am to find this website. I was diagnosed with cluster/migraines last year. I have been getting migraines since I was 13 years old, and recently cluster headaches. For me, a cluster headache means: Me wanting to tear my right eyeball out of the socket, feeling pain for almost all day(which i have read is not the usual for cluster headaches), and just being miserable. My neurologist basically told me you have a combination cluster/migraine, with a look on his face of "I feel sorry for you." For me, sometimes a nice dose of imitrex works, sometimes advil+sudafed works, sometimes nothing at all works or it just makes it a nice dull ache. All I know is that its not fun, and I hate it when i know a new cycle is starting.
Hi everybody, I´m 26 ynd come from Slovakia. I have had CH since my very early youth. In the beginning of January I have got my next period. I has started very slightly but on the last Friday was it terrible like never before. It started when I was in bath at about 7pm. I had hot water and I asleep for some minutes. Immediatly after I awoke I got it ( It seems to be very usually, that the pain starts after a short time of sleeping ). For the first time I had such nausea, that I had to fetch up. I was able to asleep at about 10pm, but at 1am It started again. And at 11am again but not so intensive. Until now it´s everything OK.
If i remember well, the top of my last period finished this way too. But before the top I had 2 - 4 hard attacks aday. I couldn´t swallow anything becouse of the nausea so I cannot take any peroral meds.
I´m sure too, that alcohol is the best trigger, but I don´t see any troubles with coffee or tee.
PainFreeDays&Nights for all of you.
I am glad and sadden to find out there are more people like me. I am on day 8 of my clusters, lucky 13 to go. I am swolling way to many imitrex. I know it's bad but I need help! I want to end the pain!
I have headaches daily and I can't seem to find a good doctor in York Pa.I am looking for help to manage my pain.
My last attack was 4 years ago...lasted 2 weeks..This attack began Nov. 14, 2000 and is still going strong. How long can this pain go on? Can't work like this..can't live like this. How many days can this go on? Anyone know what the record is? It's going on 8 weeks for me now and I don't know how to break this monster's back. Glad my wife found this website. I hope to get info from this site that my doctors don't even know about. Thanks for being here.
I don't have alot of respect for drug companies who, on the one hand, charge me 25 -35 dollars for 1 dose, and yet, vend their products in countries that have a cap on the cost for prescriptions. They must be laughing all the way to the bank, at our expense. Sure, they should make a profit, otherwise, they'd be forced out of R&D or even forced out of business, but in the meantime, my insurance company will only pay for 6, yes, only 6 doses of medicine every four weeks, so it's up to a writhing-in-pain lunatic (that's me) to decide which episodes warrant the administration of the drug.
I'm 34 & suffered episodic CH for 14 yrs now. I was diagnosed by a neuro 6 yrs ago. the demon wakes every other yr for 6-8 wks, growing in ferocity, frequency, & duration. At the peak of the cycle, I get up to 6+ CH/day topping out @ 10kip & lasting 2+ hrs, always on the L side.
I've been fairly lucky the last 3 cycles because my meds (verapamil, cafergot, & O2) have been fairly effective (85%) in prevent/ aborting the CH (less effective @ the peak of cycle).
I found this site in '99, learned all I could & printed off some of the med info when I had to find a new doc. It helped explain what I was going thru & helped get my meds renewed. I would suggest this approach to anyone having problems w/ ignorant docs.
I don't remember the messageboard from before, but I'm glad it's here now because it's time for the demon to wake up again. Can't wait to learn new dance moves (LMAO!)
I have heard that exposer to carbon monoxide triggers cluster headaches. has any one else come across this?
I would like to know because I'm in the Coast Guard and I've been xposed to high consentration of Carbon Monoxide
while working around and on boats.
waking up screaming,night after night, I've put holes in the walls, cut my legs with razor blades, ran down the alley naked, ect.
I'm new to the site and I love it!! It's good to get all the information I lacked and to hear that I'm not alone! Thanks for being in cyberspace! Cheers...
Episodal CH sufferer
Its great to find your site, I have suffered for many years I thought that I was suffering from sinus trouble for many years! I still can't belive that there is not something more serious wrong with me the pain is unbearable!! I'm in the middle of a cluster right now saw the doctor yesterday he does not seem to understand what its all about he thinks I have cluster migraines, I dont think migrane comes into it. Thats when I found your site. Graet work and some great tips on the treatment etc.
I am a 31 year old female sufferer of about 12 years now. The best part of this site is knowing i am not alone in this fight. I have a very supportive husband and three wonderful children, but they will never (I pray ) understand the torment I go through. I am also an 8th grade teacher and have been fortunate in the past to have my bouts occur during the summer months and winter holidays. this past week though, i've had to miss some work and i know they think it's ridiculous to stay home just because of a "headache". thanks for being an empathetic lifeline . i would love to hear from any of you . keep the faith. God must have a special plan for us to allow us to endure this hell on earth . my prayers with all of us--leigh
had bouts for 7 years allways start at this time of year, mine seam to accur between 9 and 11pm. i always thought it was migrain until i looked et this site. not had obout for last 2 years but seems to be back with avengence. doctor sent me to see a prof who changed tablets but thay didnt seam to work apart from make me grumpy.so i try to put up with the pain. after reading some of youre messages i can realy relate to them bye bye nick
Hello I am comforted to know there is this site for all of us who can never express in words the absurdly excruciating torture called the cluster headache. They started at 17 years old and I am 33 years old. There are quite a few odd things that I have noted over the years and hope that I can help someone. Maybe what I add will make sense and give you some new strategy or something. Anyway, here goes.
The water treatment has worked for me during a headache. I once drank about 5 liters of water and it went away. I have a slogan: "Stay Liquid".
My bowels get all weird on me, I saw one guy wrote about stomach gas; well, I get real hungry right at the onset and sometimes stuffing my face with food will help, I let out huge belches (it seems my stomach was filled with air) and sometimes the headaches goes away. Much of the time I am too far along to eat but if it is during the day and feel that first twinge then I can sometimes stave off the headache by eating. But if it is a night time headach, then I don't have time to eat and the nausea is so bad that eating is out of the question. Well, if it progresses then I feel like I have to go to the bathroom (#2) and sometimes it relieves the intensity to do so.
And then the vomiting. Anyone else vomit at the end of a headache? (not always the end but many times it signals the beginning of the clear up.
What else? Yeah, I have noticed that I can set my watch by them, usually 3 am or 6 am, and day time ones at 11 am or shortly after. I also saw that one guy had a cycle of 18 months, well, I just started a new cycle on 12-21-2000 and it had been almost 18 months to the day since my last round ended with a grand crescendo of throwing up on July 24, 1999.
So I do think there is something with the change of seasons, and also with the tummy thing.
God, I was amazed to read that many of you dance, I always get incredible looks as I rock down the street in the cold (that seems to help shorten the duration, going outside during winter).
I tap my feet to some unknown incredibly tense rhythm, and many other of your symptoms are me to a T. I don't bang much because i am afraid of cracking open my skull, but I have been known to beat my head on any available hard surface, especially at the start of one.
I am so afraid to sleep most nights when I am in a cluster cycle, I was shocked to find so many of you comment on that as well.
I live in China and I put some Tiger Balm (like icy hot rubbing creme) on my neck, right cheek (I am a right side sufferer), and just under both nostrils. The burning is sensational, but if the headaches is not a bad one (5 to 7 on the Kip scale) I can sometime find relief through that.
Also: hot peppers !!!!
I chomp on any kind of hot pepper, the resultant expectoration and nose running helps sometimes, not always.
Maybe putting some juice up the nose or near the nose and eye would help like the Tiger balm does. Actually I am using a special sore muscle liquid called Red Flower Oil, it is readily avaiable here in China, let me know and I will send some, but first check with any Chinese medicine source in your area.
I once received treatment from a Chinese doctor here who grabbed my big toe and second toe on my right foot(remember I am a right side sufferer) and tweaked the tip of toe (pushing on it and twisting it) so hard I thought he would break my toe off. Well, the pain went away. That is definitely related the the whole body mapping nerves thing with acupuncture , which I had but maybe not extensively enough to help, since I am back in the hell again. Last night I had a real 10 on the Kip scale, I called my girlfriend and told her that I was done with em, I was gonna off myself to get out of this living nightmare.
Well, I could go on but I don't know if you are following all this and I need a break, please email me for more. I will try to write some short points of attention and post it here.
hang in there you guys, I too have had trouble explaining to friends and family, they just have NO CLUE as to what really happens in our heads.
I remember one time in the States, I woke up at 6 am and knew I had to go to the ER down the street and as the doctor (or nurse, there were two people there that's all I remember) administered the demerol injection, the nurse asked the doctor, "is it really that bad" and the doctor replied "yes, you just don't know the hell he is in". I remember being so grateful to that person for seeming to know about the pain. I wonder if she was a sufferer too.
I will do my best to get to the convention in Atlanta this year, mercy on all of us, thanks for the chance to share.
Hallo, my name is Stephan Heinrich from Germany. I´am 35 years old. I have Cluster Headache since 23 years. At the beginning I have cluster attacks only in special situations, since some years 1-2 times a year for a period between 2-3 month each night.
During a cluster period most important is to avoid alcohol.
Unfortunately there is no real solution for that problem.
Hello to all of you in clusterland! My name is Scott, I'm the Sushi guy. I had cluster headaches when I was 18 until I was about 22. That was when I went to Culinary school in New York and my first instructor told me that if I didnt get glasses that he was going to fail me because I could not read the board. I got glasses and my CH's disappeared. Coincidence? I dont know. What I do know is that after a fantastic 16 years of being CH free it's a real drag to have them back. I do feel extremely fortunate to have had this long of a break, especially after reading so many other peoples storys on this site. When I was in my early 20's I started to take shrooms as a rcecreational drug as well as other things and now I wonder if they had anythindg to do with my lengthy remission. I am currently on a host of drugs, prednisone,amerge,fioricet,bla bla bla with about a 50% success rate. My CH's are usually about 7's on the kip scale but recently like the night before last I had a real beauty9-10. Danced for 3 hours. Anyways, It's great to have found this site, now I know I'm not totally nuts.
Where have you all come from ? It was my disease. A condition that no one else I have ever met or spoken to has ever heard of - never mind suffered from .I have children I hope I havent passed this disease on to . My understanding is it does not pass - anyone know different ?
I have had clusters for 26 years.I feel there is a direct connection between stomach gas and the headaches.I am currently using stadol and imitrex with some success when headache occurs,but no luck with anything preventative.
I know what it is like to suffer a Cluster Headache too :(
It is a terrible experience.I suffer them too. But I have been lucky to not have a long episode in 8 years. Felt it coming on a few times though and it went away. Thank God.
I once overheard two doctors discussing a Cluster Headache patient. The one doctor told the other doctor that he was worried about his patient because his patient was taking everything in the medicine cabinet and then some. Sound familiar. Sure did to me.Benn there. Done that.
Of anyone reading this has never experienced a cluster haeadache, please don't ever ask a sufferer "What's the matter, got a little headache?" It's not a little headache. The pain is so bad that you dread to get another one and at times you would just as soon kill yourself than to go through another one. I do not keep a gun in my home for that very reason.
I am Kati and I have suffered from cluster headaches for the last 20 years. I am very pleased to find a site to meet other sufferers. I am currently trying to persuade my doctor to provide me with an oxygen tank, does anyone have any experiences, good or bad, with this?
I am 37 years old. I had my first ever round that began Oct.19th. I had never experienced such pain!! Finally after 16 days of Hell and trying Imitrex, Zomig, Lidocaine nasal spray, and lastly oxygen the doctor put me on prednisone for 3 weeks. He decreased it each week. This took the headaches away. The side effects are bad. I will not take this again. I finally saw a neurologist who prescribed oxygen at 10 liters for 20 minutes at the onset of a headache. I started another round last Friday. The headaches are not as severe. I make sure I do the oxygen before bed. I have been able to sleep. One woman ask if we as women get hot flashes with these. I stay flushed during an attack. I have been told they are not associated with hormones. The first time I experienced this was right before my period as is now. I think a study should take place. I do belive the oxygen is helping me though. My prayers go to all of you.
I have suffered from cluster headaches for 16 years.Imitrex shots due work.The problem is I suffer 6 to 8 attacks aday,everyday,365 days a year.Can't due 8 shots aday.
Hello all! I am 37 yrs old and have been a sufferer for 14 yrs. I was diagnosed by a doctor for clusters back then but got talked into believing they were sinuses, or neck and back problems, or stress. At first I guess i could have been diagnosed as chronic as I had them pretty steady for 7 yrs. When they went away i thoght they had "run their course" but, of course that wasnt the case. now I seem to get them every 2 yrs for 3 or 4 months at a time. About 1 month into a cycle now. I cant sleep for more than an hr at a time some nights and I have the shadow hanging over me all day except for a few minutes a day when I can feel my old self in there somewhere. God Bless the internet and God Bless this site! I had no idea there were so many meds to try. I have only tried ergot and sansert and i fired my doctor for giving me those. For the last several yrs i have been going through the cycles without any meds at all except maybe a pain killer if ones laying around. They dont help much though. What I want to know is: Do they ever leave? Are we doomed to dance with this devil for the rest of our lives or do they ever eventually " run their cycle"? I cant believe how misinformed I have been all these yrs.
just started another bout with the demon song on dec. 29th,2000. have had them on and off again for 34 yrs. am 54 now. find that if i can get on oxygen as soon as possible it helps have welders oxygen set at 20 to 25 psi. on gauge and use a oxygen mask. have to quit smoking when i get these episodes back as they aggravate the old head. but it is hard because it feels like i need a smoke to help me get thru this. pain has been to kip scale of 10 yesterday, doing the dance hair pulling finger in ear pressing. teeth hurt everything on right side hurts. was hoping for some new info on this site as it has been about 4 yrs. since last bout. still hoping for a cure all but none out there. thanks for a great site.
Maybe next time
I have suffered from CHS for 20+ years. I was only diagnosed 4 years ago after my most painful episode ever. I found a very understanding Doctor who knew immediately what was wrong with me when I described my symptoms. As luck would have it I started to experience the start of an attack in her office. She immediately administered a dosage of Imitrex (injected), after the initial shock of the medication (burning sensations and tightness in the chest) subsided I realized that my headache was completely gone. She offered me a prescription for Imitrex injections and I refused (having a slight dread of needles). She put me on 240mg of verapamil once a day and prednisone with a declining dosage over a two week period. My attacks continued and got worse then they had ever been. I finally broke down and called for the Imitrex prescription. It has saved my sanity. Four years later my clusters are a little more under control (as well as you can expect anyway). I'm still taking the Verapamil daily (any attempt to stop causes the clusters to return within a day or two) and when I experience my "cycles"(which usually last 7-10 days) I start another prednisone prescription, using Imitrex as an abortive med. With this regiment I have lowered my attacks to once or twice a year instead of every 4 or 5 weeks. Unfortunately, the reason I found this site is because I am in the start of another episode (had 1 Saturday and another today). I'm keeping my fingers crossed for tonight (I usually am awakened at 1am every night during an episode with a correspoding attack mid afternoons. I wish you all well.
Are there any womwn out ther who get these besides me? Ok, do you suffer from "hot flashes" preceeding the attack? Men too. I am curious about a hormonal connection or is this somthing everyone feels? I haven't seen any entries complaining abut this yet. My body temperature also shoots WAY WAY up, if feel like i am going to ignite. What is up with this, does anyone know?
i just want to share a trick that has helped me in last couple of days. I am at the peak of a horrible cycle and i have found that taking ExcedrinPM really helps take the edge off. I am a night walker, and this is one thing i have found to help get some rest. So far (day 2) I still wake up about every hour and 1/2 with a headache but they are much easier to deal with. I use oxygen too. It helps repress those damn demons!
I have also been on prednisone but have been on it WAY too long. It was helping me live a "normal" life for about a year (i actually started to forget about them)but know there a lot of bad side effects long-term so i am seeing another doctor aobut new meds. This site has helped, there are a couple of drugs i hadn't heard of. I guess i gave up hoping for new cluster drugs a couple of years ago.
My good friend suffers from Cluster headaches frequently and badly. I am interested in peoples backgrounds to see if there is any environmental factors to these h/a. As I wish to help him
Hello! I just recently found this site, and think it's great! I have had CH since I was 30 years old (am now 53). Just started another cycle on Jan 4th (now the 10th). This was the first one I've had in about 18 months. My doctors have always told me that they were associated with sinus infections but this is not the case in all instances. For the last 4 nights, I've been sitting up in a chair to try and sleep, as lying down in bed seems to trigger it faster. Sitting up seems to just prolong the inevetable. A hot cloth on the temple helps sometimes, but the most relief seems to be a few ice cubes wrapped in the cloth and moved around just behind my ear or on my cheek below the temple. I read about the water treatment and have just started trying it. I'm willing to try anything at this point!! I wish everyone the best of luck, and have a somewhat painfree year!
I have suffered with clusters for 15 years. i'm always looking for new treatments
Thanks for making me feel like less of a wimp. I have had these headaches for about 5 years, but so far, have suffered usually no more than three weeks at a time, with just one episode per day.
I'm especially thankful for this site so that my family can read about what I am going through (as if reading makes it real for them).
Good luck to you all. What a simple request we all have - a good night's sleep, huh?
Glad to have found this site,Thank you very much. Have to much to say without getting file's out for dates etc. Can tell you i have chronic cluster ha's, and have for 25+ years, including 3 surgeries of the trigimenal nerve. Am currently on med's that i would love to throw away. That's a brief overview of the new guy on the block. As i said before thanks for the sight. Know what you guy's and gal's are going through.
I was patient at the diamond clinic and i am very disappointed in the after care that you recieve once you have checked out of the hospital.i feel that the pain management was great in the hospital but you recieve no help once you have been checked out!!!
glad to find this site!! i'm in the beginning of this years cycle.
Hi Everyone! Have had cluster headaches for approximately 20 years now and like most of you was diagnosed for half that time as having sinus problems. It was only after having an attack and screaming on the floor during a visit that the Ear, Nose & Throat doctor (who was more scared than I was, by the way!)sent me to a neurologist who diagnosed me in about 30 seconds. My cluster cycles occur every 18 months (I can mark my calendar and never be off more than a few days!) I'm in the beginning of my next cycle now which will last for about three months. I don't know what's worse sometimes, the headaches themselves or the tension waiting for the next one to hit. At any rate, it helps to know that there are others out there with the same condition and that I'm not totally losing my mind. Thanks for a great site and it certainly helps to know that when I have my next dance with the demon I can come and dance on the keyboards with you guys instead! Hang in there everyone & God Bless!
I was diagnosed w/migraines at 8 years old. I turn 25 this year. Don't know what helps bring them on. Don't know the best way to get rid of them either. My daughter turns 6 this year and now she's getting them too......If ANY body has anymore helpfull hints it would be greatly appreciated. Iv'e tried everything for mine but new meds. The only thing over the counter that helps in Excedrine for Migranes. Sometimes even then I just get worse. Any pesponse from anyone would be great. Thank you all.......
I have been going through another cycle for the past month (It's been 5 years since my last one) and this has been the worse yet. The past 2 weeks have been pure hell,the beast has come back with a vengence with 3 to 4 attacks a day. My neurologist has not found the right combination of medications to help yet,hopefully soon.
This site is great and I glad to see that I'm not crazy for the things I do when the beast comes. It's comforting to know that I am not alone.
Peace to all,
Hello Everyone, I have a friend who has cluster headaches, my heart goes out to him and all of you. I pray that a cure is found that enables peace in all your lives. I send this for my special friend Ron Andrasko who live in Maryland. God Bless You All!!!!!!!!!!!!! :) Donna from Pennsylvania
I suffer with migraines and take imitrex. 50mg or more. My son who is 9yrs. is getting them now. Is there anyone else who has a child who has these also?
Have had cluster headaches for 12 years. Normally they have lasted approximately two weeks; then go into remission for many months. However, my most recent attack (which is still rampant) began over 35 days ago. This time it traveled to the other eye.
Would like to hear comments regarding this length of time the cluster continues when the second eye is affected. The first eye is almost clear, at last.
Also, I understand there are at-home shots which can shorten the length of clusters. If anyone is knowledgeable about such shots, I would be interested in any helpful information.
Thank you for any help you might offer.
after 4 years free of these demons, they returned last week...fortunately, after 40 years of this bullspit, and, for the most mart, not using any medication, if i take 3 500 mg tylenol when i first sense the shadow, the pain remains in the managable 5-6 kip range.....God bless us all! Remember...what doesn't kill us makes us stronger!
I´m 25 years old sufferer. I appreciate, there is this site, cause I konw I´m not alone. You wouldn´t beleive, here the people doesn´t konw anything about it. You cannot find anything about on regional web. As you can see too, there is not too many messages from Europe. I visited this site for the first time 1.5 year ago during my last period. Now it starts again. I tried to get an expert help, but everybody starts with all the same stupid questions, and I´m little bit frustrate from all those medical tests they want repeat always. So I think I give up for this time. I cannot get the oxygen, even not for prescription, nobody want or can prescribe me Imitrex, couse it is paid from a half by insurance and therefore too expensive, and not even for the insurance but for me too.
Since this period started I got 3 or 4 attacks, not too bad. But it starts to be more often and more intensive. I´m going to try water-water-water. I don´t know yet, if it works.
So if there is anybody there, who knows a link on somebody in central Europe, let me know please. I appriciate all your contacts.
PainFree for ever
My only prayer is all us could be pain free.
I guess I'm one of the luckier suffers because I've only had four cycles over the past 6 years. My headaches are short - 1/2 to 1 hour maybe twice per day for a month or so. I reach 8 on the Kip scale each time. I've just started my fifth cycle; that's what got me to this site. I'm shocked at how many of us are suffering from this when few people have heard of it at all. I was lucky again when my doctor instantly recognized that I was having CH. Because my attacks are short, I find I can get through with just Tylenol but I have to take it at the first sign of an attack. Some of the stories that others have shared scare me because I believe (for no good reason) that the headaches will not get worse and the cycles will slow as I get older (I'm 44). I feel so sorry for those of you who have suffered regularly for so many years. I'm thankfull for the chance to add my voice to this site.
I have just been diagnosed with vascular migranes and would be interested to here from others and would appreciate any ways to cope or try to prevent them from happening .
i have suffered from these since i was a teenager and was told that they were sinus headache. just recently finished a 2 month cycle that started with a trip to the ER that i still cant remember. and this was the worst cycle yet, but at least i know im not crazy or alone in the world and that now i can talk to others with this problem. thankyou for designing this site for us. jim
I have suffered from CH's during two previous cycles lasting approximately six weeks each. There was a two year hiatus between the first two cycles. It was another 3 years and a couple of months before I started my third cycle, which I am experiencing now. I have been to several doctors, had CT scans done, taken pain medications, etc... This is the first time I've ever tried the Imitrex. Unfortunatley, I don't have enough to treat the several headaches I have a day. I'm currently taking it in pill form with vicodin pain killers. My pain laugbs at the vicodin, but it's better than nothing. I found this web site by just looking for CH web site in a search engine. I'm thrilled to find there is a site dedicated to CH's! I not only feel better knowing there are other people out there suffering the same affliction, but the information provided on the site is also very helpful and encouraging.
CH's are like an atomic bomb going off behind your eye and you want like hell to hold the pain but you can't get to it to make it feel better. Try going through it when you can't take vasoconstrictors due to heart trouble.
Hey ,great to find such a place. I am going to give this page to all my family, mates etc who think I'm a lightweight who cant cope with a headache!! I'm 27 suffered with ch from around 15 until 25. Then got sent to a neurologist who actually seemed to know what he was talking about. Been taking Lithium for the last 2 yrs and it has been bliss, life without headbanging!.... that was until last month when they reared there ugly heads again. Luckily was spared over Christmas and the New Year. Fingers are kept permanently crossed.
Will be back...bye
Hello everyone. I've been living with the beast for 15 years, starting when I was 15. From the time I was 15-23, they were constant, year round. When they first started, my doctor X-rayed my head, said there was nothing wrong with me, and I should quit making excuses to get out of English class! Finally diagnosed as CH by a Neurologist. I have tried prenidsone and Oxygen with limited success. I have had nasal surgurey in a failed attempt to kill the demon. I have even snorted ora-jel(that dosen't work either!) I have been blessed in the sense that the clusters tapered off, and I only get blasted for a couple of months every other winter now. Having a rough time this year - usually 7-9 Kip 2-3X daily. I was glad to find this website. I don't know anyone else who is cursed with this, but it's nice to know that I'm not alone!! I know what it's like. God Bless
This is my 1st visit to this sight. Very informative. I have been suffering from migrains for about 7 years now. about a year ago i began having hadaches all of the time. Nothing could help me through the pain. My doctor started me on Verapamil ( a blood pressure control medicine) in November. I already have low blood pressure, so I didn't understand how this medication could help me with my constant pain. However, in November, I noticed a little bit of a break in my headaches. I returned to her in December, and she increased my dosage to 180 mg / day. I still have an occasional headache, but nothing like before. I am a littlr tired at times due to my low blood pressure, but believe me, its nothing compared to my headaches. I am a new person now and I can interact with work and my two small children. My husband says I am a different person...the one he knew years ago when we met...good luck to all!
My first time on the internet trying to still to get information on chronic CH. I have suffered this hell for 27 years. I am now 50 years old and every bout seems to be more severe than the last, perhaps my pain threshold is reducing as I get older. Incidentally I am a male smoker/non drinker.
Until 1990 I was told after numerous consultations by my then GP. that after exhaustive tests it was his opinion that there was nothing wrong with me and that it was all in my head. How right he was!!! Since that unhappy episode I have found a caring GP. but information on medication has been extremely scarce and therefore bouts with me have been known to last for several months at a time.
I do not mean to be flippant or irreverant but if God wanted his son to suffer there was no need to nail him to a cross, he could have given him CH.
The above lines are not typical of me but as you can all understand that during a bout of CH. some very strange things come to mind.
I sit at my keypad crying while reading the entries on the message board and all I can think of saying is God bless us all for we know suffering.
Hi I am suffering from clusters for the past 15 years. I have tried zomeg , lithium verapemil but notohing seems to help. They seem to get more frequent as the years go on. I would like to know what others are doing for the pain and preventatives. I feel for all cluster headache suffers The pain is excruciatng and the time pain free is far an few
Hi, it's not really great to see there are so many others who suffer from CH, (I wouldn't wish it on my worst enemy,) but it is nice to see I'm not alone. Seems like the demon's actually a living thing as what works this time won't necessarily work next time. I'm always seeking something that will work for THIS one. Hang in there!
I have been suffering CH for about 8 years (3/4 times/day, for 3 weeks every 14months(?)) now but was only diagnosed properly on the last cycle. I have just emerged from a cluster but discovered this site in the first few days. What a relief. Psychologically its so good to know that I am not alone (in fact it sounds like some have it worse than myself - you have my sympathy). Its so good to know that it really does hurt as much as I thought and it wasnt in my head....and that Im not the only one who was misdiagnosed with sinus probs etc etc etc.
For interest.....Imigran (UK version of Imitrex)works great for me. Trying to relax the pain away sometimes also works (difficult when its in the 9/10 range), water helps sometimes, cold packs help sometimes.
Anyway, thanks to you all.
In the darkness, searching for light, I stumbled upon this website. I am not alone, and I have brothers and sisters that understand me.
Hello everyone, My name is William Waterrose and I suffer from Cluster Headaches.
This is a wonderful place of information, hope, understanding and bonding.
I wish all who read this the strength to be warriors during your dance with the demon.
hi, i'm the mommy of lil-boy-blu. he has had clusters since he was 2. his second cycle was at age 5,periactin, amitriptyline,propenolol did not control his H/A. neurontin did the trick. fiorecet for pain. he is now 9 and in another cycle. neurontin doesnt wk anymore. he's trying topamax and imitrex for pain. he can not attend school so he is homebound a teacher comes in. help
Hi! My name is Tom i've had cluster now for @ 36 yrs. They started when i was 16. I got the int he winter or spring. Don't know if stress is a factor or smoking, but, i do know that taking even 1 sip of alcohol will trigger an attack within 2-3 hrs. However, i have been taking Sansert as an abortive med.(2mg) and they work @ 96pct. of the time. The attacks can last from 30min. upto 3 1/2 hrs. Have been pain free for the last 3yrs, but, they're BACK as Dec. 2000. Waking up after 2 hrs of sleep is NOT pleasant. Nor is banging my head against the bathroom wall make things better, because after the CH i have a REAL headache. Using the shower (turning only the hot water on, acting as a steam room, helps the stuffy nose AND does reduce the severity of the pain from a 9/10 to @ 6/7 on the kip scale.
Anyway they say life's a bitch and then you die! (Don't i wish when i have 1 of my really, really bad one's.)
Hello to all my fellow sufferer's! I've had Clusters since June of 1988. It took 3 years for the Doctor's to figure out that Clusters was what I have. My case was complicated by the fact that I had masive brain hemeroages when I was 20, 1968, brain surgery to correct that - two plastic arteries in my brain. Dotors all felt that the headaches were related to the earlier hemorages, they are not. I've taken every drug they could come up with - none of them helped for more that a year. The ero-drugs almost gave me a heart attack, had to stop them. I went chronic in 1993. Chronic being I don't get more that two weeks pain free before the headaches start again. I'm looking for a surgical answer now - does anyone have any suggestions - Doctors names email addresses?
This site went right to my "favorites" list as soon as I found it. Been suffering from CH for 18 years. They come about every 2 or 3 years and last about 2 to 3 months with about 2 episodes a day that last about a half hour. Use O2 and nothing else. It works fine if I can catch them in time. If not, the O2 does nothing. I work construction and am out in the field all day so it is really scary when they come on cuz I cant take the O2 with me. Fortunately the boss is understanding and lets me go hide for the half hour. Never met another CH sufferer so its real nice to find this web site. Mine all started soon after I got my wisdom teeth out. Doctors say that shouldnt have anything to do with it. Anybody else have that experience? First experience was diagnosed correctly, but the doctor treated them as siezures and prescribed Tegratol and Darvon. Didnt work at all. Suffered through many spells with nothing until I heard of O2 and had to insist that it be prescribed to me. One doctor never even heard of CH. Its been about 2 years since the last episodes. Im crossing my fingers that they will never come back as Im sure we all do. My heart goes out to anyone who suffers chronically.
It is the worse pain i have ever had. I have come close to killing myself. No one seems to understand how bad it is not even the doctors.You seem to put your loved ones through hell when you get a cluster headache.
Hello- I have suffered my cluster patterns for nearly 11 years now. I usually get (3-5) CH a day, for aprox 6 weeks, twice a year (Spring and Fall). I thought that I understood my patterns and this new cycle comes by and is killing me. Is anyone else experiencing a major shift in amount of headaches they are recieving? Please let me know. Thank you
I have experienced migraines since puberty, and after nearly 40 years of trying to figure this thing out (and a few thousand Fiorinal Tablets) I believe my headaches are hormonally triggered more often than not. That, and not eating every five hours or so, seem to set me off and it's usually a week of pain.
My husband is also a migraine sufferer, though he was plagued more in his adolescence, and migraines are a rarity for him now. Thank God.
So, sadly, both of our grown daughters have migraines, too. Sorry girls! But at least the fact that we have experienced them as a family allows us the knowledge to know how best to help each other. My pain usually begins in and to the side of my right eye. Sometimes this is repeated for a period of 5-7 days and I feel like I'll never be free of pain again. I have found a drug that is OTC called Pain-Aid and it is distributed by ZEE Medical Co. Very often, if I feel that familiar pain coming on and I take two to four of these, I nip the beast in the bud. The medication is a combination of:
Aspirin 162 mg, Salicylamide 152 mg,
Acetaminophen 119 mg., and Caffeine 32.4 mg.
I believe this combination is similar to Excedrin Migraine. But whatever the combination, this one works for me in most cases. If not, Fiorinal is my lifeline. Though at one point 25 years ago I was nearly addicted to Fiorinal, so be careful with it if you must use this or any barbiturates.
One "trick" we use to kick the pain is to boil a pan of water on the stove. Carefully take the pan of steaming water to the table sitting it on a hot pad (so as not to damage the table. Sit in front of the pan with a paper towel nearby to wipe the steam from your face. Place a pillowcase over your head and the water, making a steam tent. Anything with more weight than a pillowcase will not be comfortable. Breathe in the steam vapors through your nose being careful not to get too close to the steam (use good judgment). More often than not, this practice combined with Pain Aid will "break" the headache loose. If this doesn't work with one sitting, repeat. Please be careful with the boiling water!! I hope this helps someone!
Good luck and God Bless.
Great to find a site dedicated to the dreaded cluster migraine. I'm 43 and have suffered for 14 years. Luckily I only get cluster migraine about once a year and it lasts for about four weeks, averaging three a day. I'm off work with cluster at the moment and the worst thing is people at work just don't relate to the level of pain I suffer..they seem to be amazed someone could be off work with something 'so minor' as a headache!!! I' m deputy editor in chief at a group of weekly newspapers in Chester, United Kingdom. There are numerous things mentioned on this site which are food for thought. I may well try the water treatment. I must admit I feel a natural inclination to drink water anyway when I'm suffering an attack. I also found a lot to relate to on Paul Borneo's site ( www.sleeptalk.com/paul/cluster.htm). I too get my migraines only in winter so maybe there is something in the natural light deprivation theory. For years nothing would relieve the pain for me, until Imigran came along. It really does help me a lot. I'm intrigued to read on your site that migraine can create a sense of blocked sinus. That's always been the case with me. I've spent a fortune on sinus treatments and there's never been any proper relief of the migraines. Ah well, hopefully one day they will stop for good. I must say I genuinely sympathise with sufferers who have it much, much worse than I. It must really really make life a misery. Hopefully some magical cure for all sufferers is just around the corner. Bye.
I just started a new cycle of HA's on Dec 30 (what a way to start a new year) after a 3 year remission. I wish I knew what triggered them! I'll have to go back to the doctor just to get new medication. I suffered through the last two attacks with only Advil!! God bless all of you who suffer with this.
Hi All! I have been a chronic cluster person for nearly 30 years. Just a way of life now. Have learned to recognize the signs and respond. I have carried two cafergot or ercaf tab in my pocket for over 20 years.
My pharmacist tells me that Geneva Pharmaceuticals has stopped making ercaf (The generic) and than now I have to take the more expensive Cafergot.
Can anyone confirm that ercaf has been removed from production?
Thanks, Keep smiling and working, I'm 61 now and living proof that one can make it through cluster pain(and boy do we know what pain is)!