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Below are the guestbook entries from May 2000. Thank you for your continued active involvement in this site and keep those guestbook entries coming!
Click Here to go back to the Main Guestbook Wow. I have tears in my eyes right now. I'm not going crazy, it really does hurt as much as I thought it did. I always felt like such a baby for complaining about a "headache". I always felt like there was something wrong with me because I wanted to kill myself because of a "headache". I have been suffering from Cluster Headaches for 3 years now and only last month did I or any of the doctors I have seen realize that's what I had. I can't tell you how many drugs I've taken, how many CT scans have been done, how many hours I have spent in offices and hospitals. They even did sinus surgery to "solve" the problem. I am just coming down off a cycle (at least I think I am, it's been almost a week since the last headache). Does the fear ever go away?Mike <Glassfiber@hotmail.com> NY USA Thursday, May 31, 2001 at 16:08:30 (EDT)
Hi!! I have suffered from CH since I was 17 (1992). At the time my mother took me to a doctor (neuro), they ran test and determined that I sufferred from "migranes" and that I needed to learn to deal with the stress of every day life. About two years later through my own research I learned that I have all the horrible symptons of CH. I have been dealing with them ever since. On a couple of occasions I took Imitrex (pill) but I was not impressed. My episodes last for about 3 months and I will get a CH every other night (at least 2 a night). I have stuck to taking very cold showers and it seems to help or at least not let me lose all control.
A special prayer for all those who suffer from this demon!!
Hi everyone. I have been suffering from clusters since '96. Annual bouts lasting 10-16 weeks. The most effective medication I have tried to date is Prednisone. So far, it works the first day and maintains effectiveness until dose drops below 40mg. Hard to take for extended peroids as most doctors will limit presciption, but mine have been very understanding and willing to work closely with me. Good luck to everyone and I FEEL for each and every one of you.
I am 37 and first experienced CH in 1989. At first I thought I might be having a stroke because of the one-sided pain. I was quickly diagnosed and since then I have had about 4 episodes with a remission period of 2-4 years in between. I have been prescribed a number of medications including Motrin, Ergostat, Imitrex, and even Prednisone during a really bad episode. None have proven to be very effective except perhaps the Prednisone, which had a lot of side effects. I started my latest bout of CH about a week ago and decided to check out some info on the internet. That's how I found this website and I'm glad I did! Calling this excruciating pain a headache dosen't do it justice. That's why people who haven't had them will never understand what it's like. Knowing you're not alone in misery helps you find a light at the end of the tunnel.
Thanks for this site and hang in there to all those who are suffering!
Hi, I know how you all feel. I have had these headaches on and off for years. I am seeing a pain spec. now and he says it is called Wpisodic Paroxysmal Hemicrancia. I am on an antiinflamatory 2 pills x 3 times a day , and I still suffer so much. I get such pain in my right side of my face, it hurts so much, my head feels like it could fall off. I get a watery eye, and it is awful. If any one has these systoms, please let me know and tell me if your ever goes away. I am only 37, with two kids and a husband and I am so tired of always being in pain. It hurts some times to even talk. Hope to hear from you soon.
Thanks,
Hi
I am a cluster headache sufferer. I have had them for 3 years, and suffer most of the symptoms. They usually occur around 7 om at night. The only resource I have is ice. I spend alot of time with it. I have gone to several doctors and was finally diagnosed. People who suffer, have my total sympathy. It makes you a different person.
Hello, I am surprised to see a web-site regarding Cluster Headaches. I have felt like I was the only one suffering from this. After reading some of your notes, I realise that there are other people. It has been a grueling 8 years. I have been diagnosed with chronic cluster headaches and have had them constantly since I was 22 years old. In the past 8 years, I have seen my life go from a positive energetic one to one that is negative and full of fear. The fear of being out or even at work for I am not near home which is my safe-haven when I get my headaches. I know everyone must realise how this feels who suffer from this. It just does not seem that non-suffers' (including family) can understand what you are going thru and lack of medical knowledge is at best frightening. I am glad I found this web-site and look forward to interacting with you.
Like most people i have had CH since 1986,but it was'nt until 3 years ago that it was eventually correctly diagnosed.As with most people i was originally told it was hayfever, sinus trouble,migraine etc!!.When i saw my first consultant he explained everything to me and also told me the relevant tratments,i can never explain my gratitude for not only diagnosing CH but also giving me back a reasonable standard of life when in the active phase.As everyone know's there is nothing to describe the pain but i have found it comforting to call it "THE BASTARD".Please keep up this brilliant site i will visit regularly thanks.
I have only been diagnosed with CH
I have just been diagnosed with the beast. I found this site through a search engine and I'm glad I did. Since your site caters to the family of Cluster I've taken the name of Ram Cluster.I would like to say hi to this new family of mine. Thanks for all the information and the message boards, I like it. I work in a mutual fund company in Canada
I send you all greetings and I reach out my hand to all my fellow sufferers in cyberspace, the great home of the Clusters.
Be Well
Ram Cluster
Hi, I've suffered from clusters for about 16 years. It's comforting to know there are other people out there who can understand where I'm coming from. The only drug they have found that can help me somewhat is Fioricet. The pain behind my left eye is so intense I think I'm going to die or something! I also have eye tearing, stuffy nose on one side and cannot even talk during episodes. I generally am awakened about 5:00 in the mornings with these headaches, and the worst thing about them now, is I have to try and go to work and function with one! I totally sympathize with everyone that has a cluster headache, there is nothing more painful!
Hi, I am the wife of a sufferer. My husband of only 4-1/2 years but a long time friend has suffered with these headaches for 20+ years. In 1995, Bud had quadruple bypass surgery and his headaches disappeared. He has been headache free for 6 years. At the end of 2/2001, he underwent right carotid surgery and when they unclamped his artery, he got one on the OR table and has been suffering ever since.
When first bout happened two years ago at age 43 I thought I was rid of a terrible, terrible unexplained pain. Many in family did not understand or believe me. Luckily my doctor treated them as migraines and prescribed Imitrex and fiorcet and tried preventives as nortriptyline. After about a year and a half, they came back again. This time I was referred to a neurologist who suggested it might be cluster headaches. He tried everything to prevent them such as Depokote, and Paxil with no effect. We found ibuprofen like Motrin 600 and 800 were ineffective in detering an oncoming cluster also. Best results were Imitrex nasal, when I wake up ninety minutes after falling asleep. In the morning, when they were not too strong, a couple Exedrin Migraine were ok. The third headache of the day happens at work at 4 to 5 pm. For that, a fiorocet or two, with a follow up of another an hour later kept me functional. This has all kept me functional for the last three months except now I wait at night for it to happen and can't sleep. This all has been barely manageable and curtains for my social life. Hope we can help each other.
I am new to this site and I just want to tell what happend to me and see if anyone else has had my experience. Eight years ago a Cluster hit me. It came on at 8:45 a.m. It lasted for 45 minutes. I could not figure out what had happend so I walked into my doctors office and told him about it. He said if it happend again, I should come back. The next morning, same time, it happend again. My son took me to emergency. By the time they got around to me, it was over. I went back to my doctor and told him that I could not take another of whatever it was. He sent me over to a specialist and he gave me Vicoden, Prednisone, Erogot and some other pill. Said to start taking these when I felt the first sign. The next morning I felt it coming on, I was scared so I took two of the Vicoden and the other three pills. The Cluster did not come back. I took the combination of the three drugs for about six weeks and then started back down off of them. I didn't have any more Clusters but I was really weirded out on that combination. I have had a mild headache for the past three weeks and the only thing that has taken it away is Tylenol with codine. I had one night that felt like a cluster and only lasted for about an hour (not as bad as the one I had eight years ago) but it scared me. I still have a mild headache constantly and I don't know if it is a sinus headache or if it is going to turn into a cluster. I went to a doctor today and he wrote me out a prescription for predisone (which I don't want to take because it weirded me out the last time) and I don't know if these headaches are going to turn into a Cluster. The Cluster I had eight years ago came on right afer I had gotten over a bad cold. I just got over a bad cold and now these headaches. I have been taking a Tylenol with codine every day for about four weeks and it takes my headaches away. Anyway, I don't know what to do. I don't know if I should just go ahead and start the prednisone or just keep taking Tylenol. Also, I started taking Paxal (antideppression) about four months ago which is suppose to raise your sertonin level and I read that sertonin may be one of the causes of Clusters. Any suggestions would greatly be appreciate. God bless you all and thanks for listening. Also, excuse the spelling.
I've had cluster headaches for 2o years. My last cycle was in 1993 and returned this month May, 2001. It was a joy living without them. This pain I wish on no one. I'm on Maltrax along with ice pacs or heat pacs.
It has been over a year that I have been living with chronic headaches. This pain I feel every day is destroying my life! Let my begin my story by introducing myself. My name is Kara. I am a twenty five year old educated female who up until the past year was a normal fuctioning human being. NOw due to my daily demons, as I call them, my headaces have become the one thing in my life that I can't suceed at conquering. My parent's, boyfriend,and friends all think I am crazy. I have even visited a psychiatrist within the past year because at one point my doctor thought that they were anxiety related. Well, ten months later and on several medicines including an anti-deppressant I still wake up every morning in my own hell.
In the past I was so motivated, I worked several jobs, recieved a 4.0 in graduate school, and had a pretty healthy love life. NOw my desire to pursue my goals is gone, my boyfriend thinks I am nuts, and I work at crappy jobs. I have become the type of person who has put everything else on hold because I am so scared of increasing the pain I feel everyday. The other night during a severe headache I lifted my hands toward the ceiling and called out for God to help me because nothing else has helped. Many times I wonder what went wrong and caused me this pain. Could it have been the mono, tonsilitis, thyroid disease, raynaurds sydrome or even graduate school that resulted in this pain everyday? Who knows. I guess until I find out I will continue to fight for my mind, body and soul. -Kara
Hi, I just started with this junk about a month ago. I usually have 1 a day and now I use Immitrex 50mg and will abort in 8 out of 10 clusters. I found the 50's do just as good if not better than the 100's. I hope to read more about this pain on your site, now that I have found it. I am taking a new drug called Sansert, supposedly to stop the cycle or reduce the demon's effect. It seems to break the cylce, but then I start another. Maybe they will quit all of a sudden. I Hope!!! since I also suffer from pain from 6 back surgeries. This is all I need, MORE PAIN!!!! Thanks...
Ihave been inpain just about every day for the past month. I have suffered from these headaches since I was 11 24 now
So I decided to use the information super highway to research a little more into this and find people who suffer like me. I cant tell you all how it makes me feel to know that there are others out there that understand what I go through, so far I havent gotten much help from doctors, but maybe this site can help me communicate better with them with your help
Thankyou
I just found this site and I am glad to find it. My father has cronic clusters and I absolutely hate to hear that there are so many people that suffer from this. He has been through this for almost 5 years now and I hope to learn all that I can from all of you about this "devil". I pray everyday that there will be a solution for this. I will keep in touch with you all. Feel free to email me if you wish.
I just found this site and I am glad to find it. My father has cronic clusters and I absolutely hate to hear that there are so many people that suffer from this. He has been through this for almost 5 years now and I hope to learn all that I can from all of you about this "devil". I pray everyday that there will be a solution for this. I will keep in touch with you all. Feel free to email me if you wish.
I suffer from clusters,i had surgery and it lasted 6 mo.now I suffer constantly.I take pain pills,but it only makes me sleep,my pain rates at a steady 10.
Prevent CH Attacks
Hello fellow sufferers, like all of you I am blessed with CH attacks, It started late 80’s and I didn’t know what is was until 4 years ago. Normally I have 5 attacks a day but after experimenting with several kinds of threatment I found the following solution. I take Naramig (Naratriptan) pills just before going to sleep. They prevent attacks during the night. During the morning when I feel an attack coming up I use Diclofenac painkillers (works only on an empty stomach). At noon I use Naramig again to prevent attacks during the afternoon. And in the evening it’s imigran injection time.
During my episodes I always had attacks at night, but last episode when I used Naramig for about eight weeks I never had an attack at night anymore.
Hopefully you can benefit from this information and I wish you all the best.
P.s. If it works for you, or have a question, feel free to email me.
Thank you for this sight. I am 32, and have been having yearly or bi-yearly episodes since I was 16. Until I found your site, I never new other people suffered the same thing, nor had I heard my pain put to words in any way that would come close to describing them. The courage of those who so obviously suffer far more frequently than I give me a new strength.
I have suffered from clusters for over 35 years.
Hello! I am 26 years old and have been a cluster sufferer for approximately 8 years. I am currently in "cycle" and this really blows! Right now, I am getting around 3 visits from the beast per day, but I know that number will climb. Last year at this time, I experienced my worst cluster period, getting up to 8 per 24 hour period. That ain't living folks!
I feel for all of you, and hope for all of our sake, that a cure is around the corner. I have tried a plethora of treatments...with little success. Started with Imitrex, which flipped me out on a regular basis...more so than normal{I am a drummer in a rock band;)!}. For some reason, the doc put me on Paxil(good call doc..that one sent me to the ER!). Never will understand what THAT whole episode was about. During my college days, call me crazy, but buddies said, hit the bong..it'll help....believe it or not, it did. BUT, can't quite do that on a regular basis. Tried Ice on the head, heat on the head, pressure on the head, banging my head...all for naught. One neurologist gave me Verapamil(that one liked to have killed me.....another good call doc!). I turned red, looked like a lobster, and felt like hell. Prednesone blew too. Finally found a neurologist in Little Rock that knows what the hell she is talking about. She has me on Zomig, Oxygen, and a little Darvocet on the side. If the Zomig doesn't work, and the oxygen isn't working, I crush me up a Darvocet, and take that. Doesn't always help, but it's always worth a shot.
Anyway, sorry for rambling...just glad to have found this spot. All I can say is...cherish the times when the beast is away on vacation. I am slowly learning to cope with the pain, and so is my wife. I don't bang my head anymore...cause I found that it did about as much good as the verapamil. I just lie there, grit my teeth, pray, and try to think of the recession periods. I know it's tough..but keep your chins up!
PS- I have never had a headache when playing a show....I always thought that was very peculiar.
cluster headaches every two years, only on right side of face, almost always at night
I am 41 years old and have been wrestling with my beast since age 15. Jeez, that's a long time to go through this type of pain! My beast, in my younger years was chronic and only in the last decade have become episodic.
I found this site only a couple of nights ago, and sat here mesmerized, as I read of my fellow sufferers dilemas.
Reading the opening page, I cried as I found others who could understand and so eloquently describe what I have never been able to describe.
Then I read "Sympathy for the Devil" page and just had to laugh out loud....that is a funny piece...I applaude the author. Needless to say, in my short time on the site, I have run the gamut of emotions.
I am presently in the middle of a particularly vicious cycle, going on 6 weeks now. I can set my watch to it.....7:30am......4:30pm.....10:30pm.....2:00am, give or take a few minutes ofcourse! On a "good" day my beast will visit a couple of extra times just for kicks.
In my younger years, co-workers watched as I drove my head into concrete walls, opening bloody gashes, and staining the conference room carpet.
An old boss once made the mistake of trying to comfort me by gently rubbing my shoulder while I lay groaning on the floor. I put him out of work for two weeks with a well placed elbow to the the side of his head, fracturing his jaw in two places.
I have contemplated offing myself on many occasions, but I refuse to let my beast get the better of me. For ultimately, I am stronger than he. In the middle of a cycle, when I feel my "aura" kicking in, (metalic taste, dull pain, stuffy nose....you know the drill!) I will "invite" my beast to pay his visit. "C'mon, brother...wanna dance??...I'll dance with ya...I'll mambo all night if you'd like...come get me." and you know what???? He does.
Greetings of Gratitude ans Congratulations to DJ for providing the most excellent website on the entire net. What a heart wrenching display of the hopeful and helpless, set against the drama of suffering and remission. Such desperate comraderie contrasted with the isolation of such personal pain. And the neverending dance between doctor and pharmacist, who have no way of really understanding the severity or frequency of what we go through. How can a single condition displace all the heavenly beauty of life so suddenly? What a gift this website is to enable fellowship with other victims who can appreciate the daily terror, the pervasive thoughts of suicide, and the emotional and psychological battle fronts. Thank You, DJ.
My tip of the month: Since insurance only covers six Imitrex shots per month, maximize your refills during remission months and stockpile them for when you need them.
Have not been diagnosed with CH yet but from all the information I have been reading about, there is no other logical explanation for my severe head pain. Great site. Thanks for having it.
I have been fortunate in that my episodes seem to come only
about once every two years. The period lasts about 2 to 3 weeks. That is just enough to make me feel awful. I have found that when I go three consecutive days without a headache, the cycle is over. Within a few more days it all becomes ancient history. However, I know that a couple of years later, it likely will return.
I have been popping in and out of this site for the last couple of years to read what others are going through. It dosen't help ease the pain, but it sure is good to know that I'm not crazy, I mean that others fight the same animal that I do. I'm currently 35 years old and have had CH's since I was about 12, however they weren't diagnosed correctly until I was about 24. Reading through the entries, I see that a lot of people are finding relief from medications that only made my headaches, and other peoples, worse. Isn't it weird that what works for one dosen't always work for another? And yet we all seem to have the same descriptions...behind one eye, banging our heads into just about anything we can find, etc. Some people have found a destinct cycle for their headaches and can almost predict when the next bout will start. In the 20+ years, I haven't been able to pinpoint any specific time frame for when I will fall into my next cycle. One time, I was told by a doctor that about the only thing I can count on is that they will get worse as I get older. What a thing to look forward to. I want to look forward to paying off my mortgage, seeing grandchildren, retireing and enjoying "the good life". I don't want to look forward to countless nights without sleep because the animal wakes me, or having my friends and family watch as I pulverize my head into some wall. I know that this isn't a very upbeat entry, but this isn't something to be upbeat about. I had a pretty bad dog bite on the left side of my head when I was 4 years old (over 300 stitches). Is it cooincidence that this is the same side that the headaches affect me on? Has anyone else had any major head trauma to the same side of their head as they fight their CH's on? And way does the headaches always appear on the same side, right or left? Is there some major difference in the nerves or vessels in that side of the head that maybe the doctors could find if they looked hard enough? Oh well, time to try to get some sleep. I know, like many of you, that I will be up in just a few hours. Good luck to all and hopefully somebody finds a cure soon.
I've been a clusterhead for over 26 yrs. As a certified bioenergy tech, I know remidies exist that will balance our
dis-ease. We have all been treated by masking the symptoms of pain. I hope to find sufferers in St. Louis area for testing and balancing of organs and systems. Finding the cause of the cluster; energetically, is my personal goal.
I actually thought I was the only person in the world to have cluster headaches.I am probably at the peak of my cycle right now.After 10 years of suffering I gave up on any help. I was told there was nothing they could do. I went to the er the other day and they put the lidocain up my nose and within 2 min. it was gone. I was amazed. I am excited that there are others out there that i can talk to now and get some ideas on how to handle this. Thanks
Hello, My name is Alicia; I am 23 and have been plagued with cluster headaches for approximately 6 years. Up until about a week ago I was being treated for migraines. I made an appointment with my primary doctor because my headaches were returning, with more force than normal. It had been about 2 years and 4 months since my last war with CH. He wasn't available when I went there so I was examined by his colleague. He asked my symptoms, the duration, the time frame, etc. and said "You have just described cluster headaches" I thought to myself... "You BASTARD! How dare you sit there and call my episodes 'headaches'?!" (Migraine sounds much more severe... don't you think??) After describing how I react when I get them- I was so embarrassed admitting to these things, I wanted run and hide, in fear he would have me committed! Banging my head against whatever was in reach, trying to rip off my ear and pull the top teeth right out of my mouth, pushing my eyeball so deep into my skull, I'm amazed I can still see out of it! Suicidal and homicidal thoughts and tendencies... I would sell my soul to the Devil himself, to rid myself this pain FOREVER! Crying, screaming, yelling, pulling my hair out, thrashing around in my bed... BEGGING the man that I love to kill me. Wanting to be soothed and caressed by him but in fear that if he even breathes near me I will hurt him. I watch him stare at me from across the room, almost in tears he wants to help me so badly. I know that if it were possible to transfer my pain into him he would gladly accept it, just so that I would not have to suffer any longer- for this I love him more. And then... just like they come on... they slip away- laughing and mocking every time. When I came home from the doctors last week, still not believing that they were "cluster headaches" I decided to do some research of my own and Voila! Here you all are! All with the same symptoms, diagnosis and actions as myself when suffering one of these episodes. I'm not a mushy person... but my love, heart and prayers go out to all of you, especially the young children suffering from this illness. As adults we struggle to understand the what's and why's of CH, and still find no answers- it must be 10 times worse for the poor children.
On that note, I have already bored the Hell out of you all with my jabber-jawing so off I go. I look forward to hearing from anyone at any time about cluster headaches. I am very new to the term cluster headaches, but I know them VERY well. I pray that we ALL get at least 1 restful and solid nights sleep tonight. Be well.
at last i am hearing from people who suffer just as much as i do. i am 45 years of age and have suffered from cluster headaches since i was 16 years of age. they were diagnosed at the age of 25 and as yet i have not found anything that works!!!! they last 5-6 weeks, sometimes once a day sometimes 2-3 times, and come back every 3 years. the hardest part is trying to explain to employers why i am off work with headaches!!!!!! i am now coming to the end of my cycle-hopefully-i always worry in case they are never going to end in which case my life wouldn't be worth living. tomorrow i am back to my gp to receive another drug from which i am sure i will have horrible side effects. hope someone will come up with a miracle cure soon after all you wouldn't let an animal suffer the way we do.
I have cluster headaches and migraines for the past 4 years.
Getting episodic clusters for almost 40 years! Finally, a rare and caring MD looked on the Internet and prescribed Verelan (4 hrs. before bedtime), dental lidocaine to drip into nostril on affected side, and oxygen. The oxygen is really amazingly helpful.
I'm 31 yo,and have been suffering from CH for 7 years.I get them annually,and they lasy for about 6 to 8 weeks.I have not gone to the doctor,mainly because I read about everybody else that has,and usually only to lessen the pain.I was teeling my stepmother about CHs,(she is a nurse),and she told me to breath into a bag.
Last night,the beast returned(after almost a year to the day),so I tried the bag.I was'nt sure what to do,so I just breathed in it for about 2 minutes,3 different times,in a 10 minute window.The beast went away completely!
Now,I don't know if it was the breathing that did it,or I "willed"it away,but it worked.The Beast should be returning today around dark time,and I'll try it again,and I'll let everyone know if it works again.
Hello, I'm a 42 year old construction supervisor and have been getting CH since I was 16 years old. As I have entered middle age the bouts usually lasting about 5 weeks leave me for about three years before returning. The pain can only be appreciated by other sufferers. The attacks usually wake me from sleep an hour or so after dropping off. I am currently approaching the end of cluster. My doctor prescribed MIGRIL tablets which have reduced the attacks but not totally prevented them. The pain at times has me weeping on the bedroom floor, and after the attack I am so tired and warn out. I completely sympathise with any other poor soul who gets these, the only thing that keeps me going is the thought of 3 years relief once the attacks stop. God bless to all of you.
I was diagnosed with cluster headaches about two years ago. I am having a reacurrence right now but I also have an acute sinus infection. Doing research on the sinus infection I read that 50% of migrain sufferers also suffer from chronic sinusitus and may not know it. If some of you havn't had this checked out maybe you should.When I had the headaches I tried some herbal remedies to treat the effects. Most other medications give me horrible side effects. I would reccomend feverfew for the headache itself. For the anxiety and panic attacks that usually come along with it I would try Valarian Root. It might also help you sleep. There's also company that puts out a good herbal anxiety medication that does wonders for me. It's called natural care pharmeceuticals,Inc. P.O.box 1859, Orem,UT 84059. You can also call them at 1-800-475-9811. The name on the bottle just says Anxiety. This medication will not take the pain away but it may take away your anxiety if the headache gets you worked up. After the headache resides you fear of another one comming and this causes stress actually making more come on. This medication does help. I was researching sinus infections and for some reason the search engine came up with just this sight. I felt compelled to enter because I thought I might be able to offer some good advice. I know being sick with something for long periods of time can be frustrating,it takes a toll on your body and mind.I wish I could make all of your pain go away and mine too. The way I try to cope is just really enjoy the times when I feel good.
I'm 24 and had the cluster headaches for 2 years now. I'm just waiting for the day to come when someone says they have a cure for it. I was in the military when my headaches began and it was after I received my first Anthrax shot. Don't know if it's the reason for them beginning, but no one has any idea of why they've started. My CH just started again and will probably last around 4 to 8 weeks. No one understands the pain and it would be nice to meet or talk with someone who has cluster headaches. Right now I have oxygen tanks, Imitrex (nasal spray) and am taking Calan. They don't stop the pain, but they do ease the pain. Best wishes to everyone and I'm glad I've found this site.
I have had this bastard on my back for 20 yrs.
This episode has been the worst. Twice daily (11pm / 4am)
for weeks.Sat 5/12/01 was so bad it even surprised me.
Im not sure i can handle any more.
I am here trying to help my Mom. Her Clusters have returned after a 15 year absence. All of these drugs, etc. were not available to her back then. We are trying to work our way thru...........!
I am in this site because my 10 year old daughter has thes horriable cluster headaches she is always missing school and always in pain. hopefully this new doctor can help her.
i started with headaches approximately 7 weeks ago. after numerous trips to my gp since and different medications and a diagnosis of migraines i have finally been diagnosed as having cluster headaches. i am currently off treatment awaiting to see a specialist, there is an 8 week wait to see him but my gp has got me in in 6 days time as an emergency. at first i thought i was going round the bend, my husband say's there is nothing wrong with me and everyone else i talk to has never heard of cluster headaches. i am lucky to have stumbled across the web address for this site in a magazine.
i have suffered from clusters 3 times in my life. once in my 20's...30's and now 40's. they last 6 weeks. i have found that by rubbing zostrix ointment on my temple and cheek...it really seems to work. it doesnt completely take them away...but they are not as severe. i must say this site has been a godsend these past few weeks. now i know im not alone and i can cope more easily.
Hello, first of all I'm not the one with cluster headhaches but my husband. Nevertheless, his sufering causes a lot of pain to me since I'm the one who is closer on those dark moments of our lives. My husband,when he was about 20 years old started with some strange headaches and nobody was able to tell us the reason. He has done all the exams that was possible and nothing, until two years ago. In the midle of one crisis once again we went to the hospital and after 16 years of pain, fortunately a docter told us about cluster for the first time. Since that day we search the web for the last news hopping to find the ultimate solution, the cure. It is very good to know that we are not alone.
hello, i have had cluster headaches since my early 20's now that i am 38yrs the dr. has me on cleabrex? and a green pill he says that i have to much stress in my life and elmenating the stress will make my headaches go away. i am begaining to think he is wrong. sorry about the spelling today my head hurts!
Wonderful site! Thank you all for your efforts.
Long time CH sufferer.
me....
43yrs old, married (happily 20yrs), 2 children, daughter 20, so 16.
I am in great shape other then my HA. Workout at gym when not fighting them. Construction worker.
Word of advice..... Take care of your head when your young, it might take care of you later.
Countless concusions, knocked out several times, and one major skull fractor. They say it might be a link to my problem.
I experienced my first CH when I was 18 years old (30 years ago). I was diagnosed in 1978. Since then I've tried almost everything. Most of which worked once. In 1990 I found Imitrix. All I can say is thank God for Glaxo and Imitrix. This is the only drug that has worked each and every time for me. I truly do hope that those of you who can't use Imitrix can find your wonder drug as I have. Well, time to go to bed and keep my injector by my side.
.hello my name is angie i'm 33 married to robbie with two children robert 13 and lauren 9 i have suffered from cluster headaches since i was 17 yrs old i didn't realise there was so many people who suffered from clusters and some a lot worse than myself i have been prescribed verapimil by my neurologist which seems to lessen the attacks
I have a 12 year old son who I think may suffer from this type of headache. It brings him to tears and happens about the same time every day in the same area of his head (behind his right eye). The duration varies but comes and goes without warning. I'm not sure how to get him the best help. I am fearful a doctor may simple prescribe something and not really understand his condition. Suggestions?
a am a new member to the cluster headache fan club. this is a great website for suffering people! i am looking forward to chatting with other people with this crippling afliction.you are right other people think your crazy or just a pussy i would like to beat them over the head with a cynder block and they might come close to the pain i endure!!!!!!!!!
I'm in my fifth week now of these cluster headaches,I'm truly at my wits end, I don't think my Doc knows what to prescibe me anymore!! It's comforting to read all the messages because I know I am not alone. My husband thinks I have got a brain tumour and has nearly called the paramedics on several occasions!! but even though I am rolling around the bed in agony, I have managed to say 'no' because I know that by the time I got to the ER, the intensity of the pain would have abated, infact my hubby is the only person who has seen me coping with the attacks. I am getting three in a night. I hope this is the night they don't come back!
Hi, i've been suffering from ch for 5 years now. I'm currently in the longest cycle i've ever had, with the number of attacks 4 or 5 times more than usual...i see a neurologist tomorrow; hope he can do something as i can't take zomig or imitrex due to the side effects... it was good to find this place, now i don't feel so isolated.
I,ve suffered from CH for about 25 years and having just found this site it is good to find a group of people who understand just how debilitating this illness can be. Having read the KIP scale I dont seem to get beyond level 8. Levels 9 and 10 seem to sound very scary and frightening. I'm going through a cycle at the moment and in about 4 hours will probably be sitting on the side of the bed with my head in my hands. This time however it will be different - I wont feel qite so alone
I have watched my husband suffer with these devils for 7 years now... first in the classic once a year cycle - then every 6 months (for 8 weeks each) then we hit a 3-5 headache per day (every day) that lasted over 6 months. It stopped suddenly when my husband quit smoking and he was headache free for nearly a year when (you guessed it) he started smoking again. We are now in month 19 of a 4-7 headache per day/every day "cycle" with no end in sight. He has had 2 sinus surgeries, multiple MRI's, CAT scans, chiropractor visits, oxygen, half a dozen neorologists or so mixing and matching every RX combo they can think of. We are now seeking out Headache Clinics to see if there is anywhere left to go - our most recent neurologist literally closed the file in front of us and said "I dont see any point in continuing since it looks like you've tried everything". This is the same genious who said that using pain killers to kill pain even as a last resort was "innappropriate" .... so what are we left with? He said it wasnt his problem! I welcome any feedback someone out there might have about these so called "headache clinics" and strongly urge you if you smoke TO STOP AND DONT START AGAIN.... it helped my husband once, but so far even these bone crushing devils arent strong enough to get him to quit a second time.
Hi, I am glad I found this website. I replied to some of you and hope to hear back. I was wondering do any of you experience any sharp shooting pain behind right (or left)commonly right eye during your CH attacks ? I love to hear from you if you do.I have had CH for years and it is a nightmare. I live in fear of these CH attacks. Doctors are leary in helping me with pain medication which seem to be the only relief I can get when I have these attacks. The doctors treat me with epilipic (mispelled, I am sure)medication. All medications in the past have not helped. They say pain medications would not help me cause it teaches the head to have headaches so I feel I am doomed to live in pain. I pray oneday these CH just stop ! I don't want to live like this forever. I can almost see now why we have so many drug addicts in this world cause probably large percentage of them are being turned away by their care providers cause of their medical pain/conditions and so they resort to street drugs for relief. I know people, not saying I approve of this method but I do know people who choose this route cause of these reason I can't say I totally blame them. Anyway, God Bless you all . Feel free to e-mail me if you like , love to hear from you. God Bless you and Hope You Have A Painfree Day !
Susan M. Shunkwiler
E-mail: Skunkete@prodigy.net
Just found this site and am looking for support. I've had
these clusters for 2 years now, almost daily and about the
same time of day. Would love to interact with others
regarding this.
Photosensitivity, epilepsy and now these damn headaches. Life can throw you some weird challenges but none weirder than this. If i stay on the PC too long, i could get a headache, if that doesn't happen staring at this screen could make me blind, that's not unless i have a seizure first!! Like i said, life, sometimes too weird to be believed
My doctor told me that my headache is CPH.
I had a MRI on Wendnesday. I have read this site.
My headache lasts for three to five days at intervals of 20-40 days each crisis. I am using 150 mg of indometachin for two days but it seems that the headache will disappear when it wants to go, without drugs. congratulatios for this site.
If there's a God, a physician in the Cleveland, Ohio area,
who suffers from these blasted headaches, will be reading
this, contact me, and take me on as a patient!
I'm 40 years old and have been suffering with these since
I was about 15/16 years old. Now that I'm older, the bouts
are about 1 year-10 months apart and last about 25 days.
I've tried EVERYTHING! A bout started May 4th and I'm already
totally depressed thinking about how much I'm going to suffer
before it ends.
Albeit good intentioned, NO doctor I've seen understands the
EXCRUCIATING PAIN these cause and all look at me like I'm a
drug-addict when I ask for something stronger than Darvocet.
One doctor, now retired, bless his heart, gave me Demerol to
take when I woke up in the middle of the night with them...
As most of you well know, those are the one's that really make
you think about suicide because they're full-blown before you're
even aware! But every other doctor has prescribed Darvocet,
"Take 1 every 6 to 8 hours for pain" (I know most of you will
get a good laugh at that!)and then gets angry when I ask for
more because I've taken the 20 pills in 3 to 5 days!
In this morning's 2am headache, I took 4 of the 6 Cafergot
allowed in 24 hours. I know I will get at least one more
headache today (in a week or so, it will be 3 to 5 more per
day before this bout takes it's ending course) what am I
supposed to do then?
I'm glad I found this web site. It helps to know others are
out there like me!
Lisa Collins
After 7 years I've found you.....After telling the Dr.s the
pain is like someone scraping the back of my left eyeball with a potato pealer........After 7 years of pleading with God to not let it happen again or even "stop rumbling - just get on with it" for weeks and months between bouts.....
After finally having the diagnosis made official to be told
"I don't know much about cluster headaches...." I found you
and I'm going to copy some info for the Dr....Thanks.
I have just found your site after reading about it in a magazine. AT LAST! My partner has been suffering from cluster headaches for the past 2 years and have only just had them officially diagnosed. He hasn't seen this site yet but i am sure it will be so helpful for him. with understanding comes peace.... Thank you.
My headaches started on Friday May 4, 2001. It started in the middle of the day while at lunch. First it was just a sharp pain from the top of my head to what seemed like the back of my eye. It only lasted a matter of seconds. Then came Saturday morning and bamm it hit me. Again it started at the top of my head on the left side then it was as if someone touched me with a electrical cord that was plugged in. This has happened to me every day now at hits me between 7:00 A.M. and 9:00 Am. The normal type of headach is with me all day. I do not experience the severe headach at night, at leat not yet. The funny thing is that I never experienced any bad headaches at any other time of my life. I am currently 56 years of age. I do not smoke or drink. After reading some of the other people experiencing the devil, I don't know if I will be able to handle it. I need to work but when it hits I can not function.
gr8 website
pity about about the dis-ease
just started topiramate- fingers crossed
Hi my names Janet & I was diagnosed with clusters 14 months ago.A sunbed blew up in my face & I was blinded for 18 hours.I felt like someone had buried an axe in my head. The pain was worse than waking up during an appendectomy(which did happen)I dont have much luck. I basically wanted to die. I take imigran in a nasal spray & sometimes have to have injection. I was given oxygen in hospital which helped, I wish they would give me that all the time as it helps.I loose my speech now and my daughters have got used to me sounding drunk.I wish doctors knew more about the pressure it puts us under, to just go about our normal day.Sometimes when I get a really bad one I just want to die, and I bang my head on the wall or hit myself with something hard. Doesnt help though.Maybe its time to change doctors.
Hi everyone I would really like to thank whoever is responsible for creating this website, I'm a fairly new cluster sufferer but I feel like a veteran. I'm a 30 year old male. My first bout with this "DEVIL" was 3 years ago. This is my second round. The pain is unreal, very diffulcult to explain to other people. Most people can not even begin to understand what I or we, feel. I feel very alone with this. this is a form of suffering that is very personal. My first time I would get 1 headache a day at 12:30 pm right after my lunch break at work, my boss and co-workers probably thinking, I'm just trying to not work. That lasted about a month and a half. After that I was fine for three years. ITS BACK!!! More violent than last time (Is that normal?) Now I get about three a day and the pain is unbelievable. I consider myself to have a high threshold of pain. But this is a bit excessive. If you have never had one of these please stop reading this for a moment and THANK GOD!!! ..... OK now support your friend or loved one from now on, beleive me they need it. My question is to anyone that has tried oxygen...Does it work? Anyway I'm outta here for today. You know how war veterans or even police officers change over the years, all the pain and suffering they see and experience changes people. I beleive this can also change someone. This is like WAR. A very personal war but none the less WAR. I person can come to me and say "Man I had a terrible cold over the weekend" I think SO WHAT! "Bro I lifted that heavy box and the pain" I think BIG DEAL. " Yo I need a aspirin I have a headache" My first thought is .."Yeah, but you never had a cluster" I can almost say I actually look down at people for this, maybe I wish I did not have this or maybe I would just like people to understand, just experience the pain for 5 minutes. I'm starting to sound like a grumpy guy, I assure you I'm not I just want this crap over (for now at least). Anyway I'm off to DANCE.
Today, I was on my way to school, I felt that pain, you know the one, I starting cussing out the world from anger of being in pain! so instead of making my 8 o'clock class I waited outside health center, I was seen, and waited for around the school for hrs until I saw the school doctor, he says I have Muscular Migranes, all this time I thought it was some residual thing from the Bell's Palsy I had when I was 10, I'm 24, my questions to anyone out there, Does it get worse? Can you live an average life with this illment? What next??? thanks
hello everyone ! i am a 35 year old nurse in the uk. i have suffered from cluster headaches sice i was 14 yrs old. Luckily (hah) i only get them every 5 to 7 years, the attacks last between 4 and 8 weeks at a time. At this time i really wish that i could die!! i know it sounds dramatic but when it begins i know that i am going to be incapable of a normal existence untill IT decides to leave me alone. I have tried various treatments and only o2 therapy offers any relief. I am at the 4 year mark now and live in constant dread of the next cycle. I have no control, no warning,i just wake up one morning and it is there,its like going mad or being posessed!!! I dont even know what causes it! A friend reckons its alien implants!!! collecting information from me (hes a sci fi freak!!) if it is i wish they would bugger off!! (sorry for swearing) well im glad there is some support now as none sufferers cant be expected to understand and i dont know anyone else that gets these attacks. bye now im off to look around the site. take care ANGELA
I've been getting these things since 1984. Many neurologists weren't familiar with them at that time, and I've tried just about everything under the sun. I was part of the experimental phase of imitrex injections. I think the CH resented it, and that year, for the first and last time, I had three cycles (I'm usually every 20-26 months). I've since abandoned drugs. So far, nothing has been more effective than the combination of oxygen, ice, and magnets. Really. Tiny magnets, placed on very specific acupuncture points, along with two domino sized magnets I use in the grip of the headache to chase it away, have cut down the average duration of the CH, as well as it's intensity.
But they keep coming.
I'm glad this site exists. If you know of one for my wife, please drop me a line. I think watching someone you love going through this and being powerless to stop it as almost -- almost -- as painful as having the damn thing. Here's wishing you all a good night's sleep...
What an incredible relief to find others that suffer as I do! People that understand that "No, I don't just get headaches...I get Cluster Headaches!" I have had them for less than 2 years, but I feel I have aged 20. Since they began my longest 'pain-free'period was 2 weeks. It wasn't even long enough to recover from the insomnia. I felt physically, mentally and emotionally drained. My worst moment was waking for the 3rd time in 5 hours, trying to remain calm while I waited for my painkiller to kick in. But I couldn't do it, I started to panic. I was sitting on my sofa whimpering out loud that I could'nt go on like this. I must have sounded insane because that is sure how I felt. Here I was, an inherently happy person thinking that I'd rather kill myself then go through another year like that. But, I made it through that episode...and several others since. Today I finally have some medication that is working and I have had 2 months without pain! But after finding this site, if and when they do come back, I will know that I am not alone. I don't know what else to say besides...Thank you.
I have had cluster headaches for about 10 to 12 years now
It is comforting to know (I think) that I am not alone in suffering with cluster headaches. This is only the third year that i have had them and this year they are really bad. Thanks for the great information!!!
i have cluster headaches for over nine years, at one point in time, i was taking over 50 shots of demoral a week. Then a miracle came into my life, i never believed in accupuncture or herbal medicine, but in my case ive gone from taking 50 shots a week to maybe 5 every two weeks, i still get my bouts but know i can live with the pain that is maybe one hundreth of what i use to have, if you have any questions please email me.
Almost three, I repeat, three years have gone by and I've been CH free, until now. They're back, and I came right to this site to find out if a "cure" had been discovered. I see that is not the case, but it seems that at least more information is available about them. Thanks for being here.
There is a special diet technique that can often relieve
or cure chronic headaches. One medical person who uses this
method is Dr. Ray Charles in Scottsdale Arizona (his real
name!). I would be happy to share more information.
A friend of mine found this site for me a couple of weeks ago when she started looking around for answers about cluster headaches. I awoke with a full-blown headache and she thought I was dying in front of her eyes. My clusters started years ago, about 12, before there was an internet to look up things on. Had some really bad cycles, and the last two or three before this batch weren't too bad. I believe this batch is probably the worst ever. Have had back to back to back headaches several nights in this round. Never had three in a row before and they are sure no fun. Writing this at 4 in the morning because I got up and left and came to the office so she could sleep. Have tried about everything I know of to relieve them: Imitrex has worked in the past, been taking depakote daily for a couple of years which lessened the last couple of cycles. Tried oxygen this time. Nothing really helped unless I could catch one starting in the day or when I was awake. Got some zomig this week and it is working on stopping ones that start when awake and curtails (to a degree)ones that sneak up on you in the middle of the night. It is just very comforting to find that there appear to be a lot of people out there who have the same thing. It is and has been really hard to explain to someone about something they have never experienced. And you hope for their sake they never have to experience it. Will keep checking back to the site, and will certainly correspond with anyone who wants to.
Hello, I am the wife of 12 years to a CH suffer, "these things scare me to death." Keith suffered for 6 years but was miss diagnosed. that was 7 years ago. attacks came back one month ago, much more severe, 7 to 8 a day, lasting 2 hours and up. we have 2 children now and his biggest fear is them seeing him suffer, "God help us, it would scare them to death." My Prayers and compassion to all you poor souls that suffer and to those who love you.
Hello All! I just saw this site and started to cry. I have suffered from these bastards for 20 years and felt like the only one in the world with them. I have been free for 3 1/2 years and last night guess what..... here we go again....... I am part of the lucky crew whose episodes are growing further apart as they grow older THANK GOD. The only problem, I stay in the zone longer each time. Last time it was 8 weeks. Yup I am a girl, single Mom of wonderful 5 year old. I don't have the time for these. This will be the first time my daughter is old enough to be aware of my condition. Please GOD let them only come at night while she is sleeping.
I head off to my new DR tommorow to once again explain what excruciating pain is and that no I am not pregnant, no I have not recently had a head injury, that yes I have had a million CAT SCANS and there is no brain tumor. No these are not migrains and Zomig, Methysergide and caffeine do not help me they only make me puke.
I do have hope however. My last Drs visit RE the bastards I got a fresh approach. "well since none of the cures seem to work and your attacks are not daily why don't we work on the pain" what was that????? Pain relief to see me through...?? What a concept. He prescribed Vicadin (spelling?). Just enough to get me over the hump and back to sleep. Two of them and 20 minutes later the pain is gone for HOURS. Is this for everyone? NO. Junkies stay away highley addictive.
Tommorow I am going to ask to try IMITREX (spelling?). I prefer not to have heavy pain killers if there is something else to try. If that does not work however I will sit in my Drs office, at his house, in his car until he gives me pain control. I own this pain and there are drugs that can take it away.
Good Luck to ALL. I'll probably be back later tonight I can feel the shadows already.
Hello! Just thought I would add to all the CHS out there. The last time I had a cycle of CH was about 6 years ago. I have them now but don't know how long they will last. I would like to know if anyone else has this long of a span of not have CH. Hope It's short
This is my 3rd year and my doctor just now prescribed me Imitrex pills. I`m glad I found this web site, maybe there is something on here that might give me some better relief. Hopefully, one day someone will find a cure for all of us.
Thank you for this site. I have learned more in the last few hours than I did all day at the doctors. Due to the fact these headaches are directed more toward men, my doctor is treating me for migranes. I know now, that is not what I am suffering from. Thanks again for the information.
Hi,
Am 34ys of age and suffering from CH for about 15ys now and never liked to read, write or talk about it at moments i didn't feel the devil inside my head. Lately it geves me some comfort reading your comments, ... So at last dedided to join the group.
Best wishes to ya all,
Patman
PS hope my English is +/- ok, i speak Dutch normally :-)
Hi im a 31y male been suffering from cronic cluster headaces daily for the past 2 years. just found this site and am glad to be able two share & listen to others trying to deal with this curse put upon us.Allways into corrosponding with anyone who wants to talk CH spiecally any one living in New Zealand..
I am now 50 years old. I started having cluster headaches at the age of 21. I read all the medical info and all the real life stories of this disabilatating nightmare and I lived with it for over 15 years. I experimented with all the drugs and none of them prevented them from reoccurring every other year. I did find some relief in the oxygen, which seemed to help the pain in the attack; But, I always knew it was temporary and that the pain would come again. Whenever I would wait in a line at the checkout counter in the supermarket I would pick up a magazine or paper on display to browse through to kill time while waiting in line. On this particular time many years ago I picked up the "Enquirer" and flipped to a page with the headline ~ "Cocaine" found as a Cure for "Cluster Headaches". You can imagine my reaction! At this time in my life I was beginning to experiment with it by nature; But my use was only experimental as a new party thing and nothing more. The article suggested that you "snort" when you were having the headache. Well for the need to come to a "point" I happened to have it available at the time I was expierencing one of these "Excrusiations" and I did it. I snorted that cocaine. My husband was by my side watching my every reaction. It has been over 15 years since my last headache. I tried all the medication, believe me. I tried even accupunture. You never want to try having a "cluster" with needles stuck in your head. Right before I took my "Unorthodox Method" I went to a Doctor that a customer of my husband recommended. It was $250.00 for the intial visit. Of course I went because as anyone who has suffered from these headaches know; "You will try anything" ~ His prognosis was to put me "under" in the hospital for a few days. There was allot of medical jargon attached to it but the "layman" scenario was "coma" ~ I don't know if I went into a "Miraclous Remission" or if it was the cocaine that healed me. But I have tested it out over the years and I find for myself that cocaine snorted in moderation has been an "Antidote" to this histamine horror. I have been awakened in the middle of the night by a pain that at first "gnaws" then "throbs", then "burns" and "tortures" you to near "Insanity". I only write this because it helped me. I don't if it can help you. I don't think it's for everyone. I think you have to hear what I say and listen to what you want and choose a path for those who suffer. I don't know what will work for you. I know what worked for me and I'm not here to support it for anyone else because I have nothing to support my "prescription"~
zzzzzzz I zzzzzz
Who was it that said any club that would have me as a member, I don't want to join.. Well in this case it holds true! ;-)
Hello, all. I won't type in my entire sad story, as it is identical to the ones that I have been reading here. We can all recognize ourselves in every post! However, there is a difference. I have found a true cure, at least for me, that I would like to share with you. I'm not selling anything, and I'm not a crackpot. I just truly would like to get the word out to everyone. Again, I am NOT selling anything! I have typed a 2 page history in a word document that I would be happy to email to you if you are interested. Thanks and happy trails! Barb
I have suffered from CPS, Chronic Pain Syndrome for almost 5 years. First diagnoised as Cluster Headaches, then Migranial headaches. My level of pain varies from day to day. I have seen over 30 doctors. Each not willing to commit me to medication for long term care, understandably. I have attended 3 separted pain management facilities including Cedar Sinas in Los Angles, CA. However, I was at the point in my life where I was actively seeking a easy way out of this body. My level of pain averages between 6 & 9, daily. I finally discovered a doctor who truly listened to me. If there is any advice I can give is, don't stop trying different doctors till you find one who will not only listen, but provide releif for you. In my past, I have never used medication on a daily bases. At first I felt weak for having to rely on medication to survive a day...finally I decide, Life Is Ment To Be Enjoyed & Not Endured....I too use aroma therapy: lavendar & spirtment on my temples, this tends to reduce my anxiety during severe bouts of pain...any comments, please feel free to e-mail me.
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