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Below are the guestbook entries from November 1st-30th 1999. 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 Just found the site. Great informationDick Seitz <seitzre@aol.com> Gilberts, IL USA Tuesday, November 30, 1999 at 19:46:12 (EST)
It's beautiful to find this Website....I am a Clusterhead..hoping to find support, understanding and possible relief from this incredible pain....Thank you again for this Website....D. Nelson
I don't know the different headache labels, but I sure do suffer from some mean ones. My Doc prescribed Fiorcet last year & I take them throughout the week and day, depending on how the headache feels. My first doc dx me with Migraines in 1/98 an later that year 11/98 I had very bad attack involving electrical shock headaches and neurological problems. In 2/99, I was finally diagnosed with MS. Its strange because the doc I was seeing in 11/98 couldn't tell if I was suffering from migraines or MS. I didn't know they were so close in symptoms. I just wanted to surf the net and find out about my meds and symptoms. If you have any info, please email me. Thanks.
first time here. thank you for having me over.
I am new to this cluster headaches and this site has really helped me understand alot. My dad is suffering from them and tonight was my first time to ever see him have one. I can say it is really aggravating to just sit and watch him pace the floor, holding his head and crying. I am 31 years old and I can honestly say this was my first time to ever see my dad cry. It just breaks my heart that I can't do anything for him. The bad thing is he can't seem to find a doctor in our area who can help him, the ones he has seen keep giving him medicine for migraines and he says that it doesn't help. I plan on returning to keep learning more information so maybe I can find a way to help him deal with the headaches.
While waiting for my neuro. appt. 12/10, I decided to try an alternative treatment I'd heard helps some people: melatonin. I bought some 3 mg tabs at Walmart on Sat., & took 1 at bedtime the past 2 nites. It seems to be helping -- for the 1st time in weeks I had 2 straight nites of decent sleep; no waking at 1 & 4 AM; no painkillers. I still have the knot in my neck & the shadow/twinges, but seem to be avoiding full-blown attacks. Maybe it's too soon to get excited, & maybe my fall cycle is starting to fade after 2+ mos., but then again, maybe this is an overlooked, cheap, effective OTC weapon for some people. The pharmacist at CVS where I fill my Fiornal Rx's says this is legit, that Melatonin can stabilize serotonin levels & help many cluster sufferers. He says it's safe, & can be taken with painkillers if necessary, esp. at nite when sedation isn't a big concern. I thought I'd post this as some of you may want to try this also. You may want to speak with your doc or pharmacist first, though, depending on what other treatments you're under. I wonder if others out there have had any lasting benefit from this. I'd also like to learn more about full-spectrum light therapy, if anyone has benefited from it & can explain exactly how to administer it. Basically, I'm looking for preventative approaches to hopefully lessen dependence on pain drugs. Well, time for bed...hoping for a third good nite. I'll come back with an update on whether the melatonin seems to continue to help. Wishing you all relief & sleep.
I've been a sufferer of cluster headaches for 12 years now. I am 29 going on 79. I am a foot and ankle surgeon who without imitrex sq would not be able to practice. I've been to the most renound headache specialists from Chicago, Houston, and Dallas and feel as though I honestly know more than all. I have recently be experimenting with the antidepressants ie. prozac and paxil and have found a way that although does not necessarily eliminate all the headaches but may decrease the intensity. If you have any input to the use of such meds I would like to know.
Look forward to hearing from various sufferers. You often can feel very alone living in a world of such tortuous pain.
Matt
I started getting cluster headaches 26 year ago. I suffered for almost 5 years before I found a doctor who identified the symptoms correctly. I've used Fiorinal all those years and combined it with caffine (from drinking coke classsic), meditation (telling myself to remain calm, stay relaxed and that the headache would eventually go away)to deal with all those cluster's. My headaches were episodic and usually occured once a year around Nov. Over the years I read everything I could find to try to handle or prevent the cluster from happening. It was not until about 6 years ago, after the worst headaches I ever had, (10 hours of intense pain) where nothing helped (ice packs, medication, 10 pills and meditation) that I found another trigger of the headaches I had never seen or heard of before. BEEF. That night my wife had cooked a large T-bone steak for dinner. We used to have beef about twice a week then. Since then we have restricted beef to maybe once every 10 days. I've also cut back on other dairy products whole milk, cheese, or things made with dairy products. For the past 2 years I've been pain free. There was a point where I used to be able to tell when a headache was coming on. I would start to feel to pain in my neck (right side where headaches always settled in) like the muscle's were being tied into a knot. If I was able to get the medication quickly enough and get to some place quite, I felt that I could count on limiting the headache to 40, 45 minutes and keep the pain to a minimum. I don't know if any of my expierence will help anyone but maybe the is some hope of getting past the clusters.
I was recently diagnosed with cluster headaches after going through all the tests for sinus problems and migraines. I am especially pleased to find this site, thanks to my nurse who informed me of this and realized that what I was going through was very real and not just "in my head" so to speak! I get new information every week, and I'm sure everyday if I could look at a computer screen that much! Thanks much for this site, it is a Godsend!!
Very cool site, especially when you can't sleep because of the medications taken to try and "control" these things!! Decadron, calan,librium,oxygen therapy and fioricet when absolutly needed are what UMDNJ are treating me w/ right now. After reading about some of your experiences here in this site I anxious to talk to the Drs. about other methods that I haven't tried to date. 17 years and still no way to abort these things!!!!
Hello, my name is Susan. I am a "clusterhead". I have been for the past 20 years. I was 16 when the attacks started. I was only diagnosed 4-5 years ago. For the longest time I've gone through Hell trying to get people to understand the pain. I've been prescribed with everything from pain pills to mood elevators to nasal sprays. They would work for a short time then dependance and overdosing would take place. Trips to the ER resulted in shots of morphine or demeral. These would allow me to sleep 10-12 hours only to awaken with another headache. Over the past 3 yrs I've tried to endure the attacks drug free. I use meditation and displacement techniques. Again, these only work for the first week or two. After that the suicidal thoughts enter in. My lover of 9 years has come to understand what I need. Ice packs placed near my tear duct on my affected side(the right) help to "freeze" the pain. Also forcing myself to gag to the point of puking seems to make the headache break. I cannot continue to put my system through that. Rubbing the length of my face relieves the pressure as well. When I get to the point where nothing is working I need the support of my mate who holds my hand and reminds me that it will go away. This helps. My heart goes out to all those who suffer. I would not wish this on my worst enemy. I cried when my friend found this site. I have talked to people who claim to know others with the affliction. It is different communicating with actual sufferers. I like the comment about if a high-profile type person had these there would be a cure. Maybe someday there will be. For now we must accept our "fate" and do the best we can individually. God bless you all and think of me next time you are attacked. I may be in pain at the same time. PEACE
My first demon struck in 1977, and I thought I was going to die. It was several years before I was correctly diagnosed and put on Cafergot. It didn't work once the headache starts, but after doubling the dose, it worked to prevent the pain if I don't miss a dose during the 6-8 week episodes. If I miss a dose, I can count on a demon attacking in the middle of the night. Interesting treatment, I still have the other symptoms like swelling on the neck, tightening of the muscles, blockage of the sinuses, JUST NO PAIN. Suffered episodes twice a year for many years, then maybe once a year every two years. Its now been four years. I thought maybe gone forever, but no, two days ago it attacked while traveling for Thankgiving. Back on the Cafergot.
I have been with my wife 10 years and she has suffered terrible cluster headaches daily. It has at times been a living hell. She is quite sensitive so when a medication seems to work, it will adversely affect your heart. The only thing that has kept her going is her strong belief in the Lord. She owns and operates a beauty salon 7 days a week since "relaxing" only makes her feel the pain more. We are looking for a support group in the greater Los Angeles area. Thanks for listening.
I just recently got on line and am new at this so please bear with me. Finding this web site is great although I am very sad to find that there are so many fellow sufferers out there. I have had CH since I was twenty. I am now thirty-nine. I didn't have any attacks for about fourteen months, the longest stretch every as I usually am lucky to go two or three days without a hit. Thought they were gone. OH WELL!! It was fantastic while it lasted. Thanks for all the information. I'm sure I'll be back.
I am a contributing editor for Suite101.com and I write a
weekly article about headaches. My next one (11/30/99) will
be about cluster headaches and I'll be sure to note this
website so more cluster headache sufferers can find you.
Thankfully I don't have them myself, migraines are bad
enough, thank you, but I used to have a boss who had cluster
headaches and well remember what she went through.
hi my name is jim , i have had cluster headaches 23 years . They usually last 6 weeks out of the year . My doctor says if the president of the U.S. got clusters , you better believe they would find a cure .Until then we have to deal with them the best we can .
I posted a previous message on 11/23. I was going to e-mail the following to Signar from Norway, but figured I'd post it instead so anyone out there checking this forum can respond:
Your English is very good -- have you spent time in the US or UK?
I'm wondering which nasal spray you're using -- perhaps imitrex or DHE (ergotamine)? Can your spray be taken to prevent attacks, or just to relieve one that's started already? I'm seeing a neurologist soon, & I'm hoping he'll have me try both preventive & and abortive treatments. Fiornal has been my mainstay for some time, but I think it's becoming less effective, & I think I'm suffering a rebound effect that carries into the daytime hours. If something could break the cycle and prevent most of the attacks, I'd be able to reduce my dependence on pain drugs. I'm intrigued by what I've read about full-spectrum light therapy, oxygen and botox injections. Best of luck with your battle with "the beast"!
I am so thankful today that i found this site. I have read many posts and am gratful that there is support out here. May god Bless each and everyone of you,Loretta
Hi. I am a 49 year old female and have had cluster heachaches for 21 years. During my last episode, my doctor put me on 300mg of Lithium twice a day and it WORKED!! After 20 years, I feel that for the first time in my life, I might be able to lead a "normal" life. Before this, I had tried everything including the newest drugs for migraine, but they never helped a cluster headache. I wish only the best of luck to everyone suffering from these devastating headaches and hope you find something that works for you.
My God!! I thought I was the only person in this prison
camp!! I didn't realize I had so much company! It's a
relief to know there are other people that understand just
what these things feel like. I thought it was just me! The
stories I read... I swear I wrote them. My feelings go out
to all of you as I can really say, "I feel your pain" and
REALLY mean it! My very best to all of you!!
Hi, I'm a Norwegian 52 year old male, having suffered from
CH for 3 years. I didn't really know it was CH until I
started my 3 bout, until then I believed, and my doctor and
dentist to, that I was suffering from toothache, and after I
had all my back upper right teeth removed, that I suffered
from phantom nerve pains. Today, we all know better, and I
was very happy when I found this web site with all this
information about HC.
CH is nothing I would like my worst enemy to suffer from,
yet there is a certain comfort (no offense !) in realizing
I'm not alone in this terrible world of CH.
I've so far had 3 bouts, with one year in between, and
always starting in the fall. Since I was not diagnosed until
this year, my experience in medication is very limited.
But I have been using nasal spray for a couple of weeks, and
even if it doesn't stop the attack, in most cases it
shortens them from an average of one hour to 30-40 minutes.
I've been going for about 5 weeks now, hoping that this
period is soon about to end. Last night, for instance, I
had 5 attacks from 9pm to 6am, driving me almost crazy,
which I realize is a common feature among Clusterheads, as
I can read from all the stuff on this site.
Next time I se my doctor, I plan to bring some prints of
information found here, to discuss relevans in my case.
Thanks for keeping this site alive, and good luck to
you all.
s
Your site is the best.I wi be checking it out every week.
Keep up the great work.
I just ran across this site tonight, and have to say i'm happy i did. have had these wonderful things since i was 15, now 25, and am getting real tired of them. Currently on prednisone (20 mg) and having mixed results. I do well for a while then it doesn't seem to work. Been up the last two nights, around 3:30. Luckily i have good insurance and can half way afford Imitrex injects. I see a specialist in Omaha, Ne, and he wants to stick me on Verapamil. I'm not sure what to think, so if you have any suggestions let me know. I hate to say this but it's actually nice to read that there are "others" out there. This is my first year teaching and no one around seems to understand what exactly i'm going through. This is my seventh week so i think i'm almost done, i'm praying. Has anyone out there had any bad effects from this Verapamil, if so let me know. I'm at that desperation stage, once again, and i'm willing to try anything. Thanks for listening, hopefully i won't have to dance tonight.
I am 30 yrs old and I have had these killers since I was 20. I have been seeing a Doctor for the last 6 yrs and he has tried almost everything on me. Nothing works!! They are seasonal and seem to come everytime the weather changes. I havent been able to try the injections because I have a slight heart problem (MVP). THe Doctor is scared if I try the injections I could have some serious complications with my heart. I have discovered over the last 10 yrs tho that if I can get to a vehicle and turn the AC wide open in my right eye, it helps ease the pain. If someone can think of anything that might help please let me know.
I'm 47 & have had this affliction since my mid-20's. My HA's are always in the left temporal/orbital area & spread down the left side of my face and into my neck when severe. I usually experience cycles of nightly HA's in late Spring & early fall lasting a few weeks, followed by 3-5 mos. of remission. I can't tolerate any alcohol during HA cycles. The onset was not too long after extraction of 4 impacted wisdom teeth, though of course I can't know if there's any connection. Over the years I've seen neurologists, allergists, & ENT's for these sasonal/nocturnal HA's, in addition to several primary docs. Twice I was diagnosed with clusters, but I didn't accept this or understand it, & always thought allergies & sinus problems were causing or triggering the HA's because of the facial pain & congestion, & my known allergies to mold, trees, grasses, etc., & because I sometimes get some relief or prevention from antihistamines &/or decongestants (but only during the mild part of a cycle). Last week I saw my PCP for a physical (which was entirely normal), & complained of being in the midst of a bad cycle of nightly HA's that started in Sept. He offered me another Rx of the Fiornal I've taken for the past few yrs., which relieves my HA's but not totally (& they still come back in 2-4 hrs when I'm in a severe cycle). I asked him about a referral to an ENT surgeon, because I thought sinus surgery might be an option to consider. Then, 2 days ago, I finally decided to search the web for cluster info., & found this site. I read most of the info., & I'm now convinced that my CH diagnosis is on target, & I believe I've been "barking up the wrong tree" for years with my sinus theory. Like many of you, I'm grateful to have found this community of people who suffer as I do, & profoundly relieved to know I'm not alone, not somehow defective or crazy. (I also want to compliment the webmaster on creating a nicely organized, clearly & sensitively written group of pages). Yesterday I called my doc back & told him of my acceptance of the CH diagnosis & said that I'm dissatisfied with the control I get from Fiornal. He suggested Midrin, & offered to refer me back to the neurologist I say 1 1/2 yrs. ago. I decided to try the Midrin first, & got the Rx yesterday. I awoke at 1 AM this morning with a HA, about 2 hrs. after falling asleep (typical), & took 2 caps. This worked about the same as the Fiornal, allowing me to go back to sleep after about 30-45 min. of splashing hot water on the left side of my face until the meds fully kicked in. Ditto at about 5 AM. Ditto at 6:30 AM, except this time the Midrin had little effect & the HA actually got worse (I was in tears an hour later & was so incapacitated that my wife had to delay leaving for work to help get our 2 kids ready for school, & I had to call in sick to work, which I've never done due to a HA). I was afraid to take any more meds, so I just kept pacing around in agony, doing frequent hot water treatments (which helps little once a HA gets to the "screamer" level) & waited to call my doc at 9 AM when he opens. I think a lot of people would go to the ER in my condition, but I've never done this -- I guess I have a lot of tolerance for pain, & I'm rather used to it. My doc called me back & said I could take some Fiornal, which lessened the HA to a tolerable level although my face still hurts a lot. He also advised me to return to the neurologist I went to 1 1/2 yrs. ago, & I made an appt. for 12/10. Maybe he'll put me on prednisone, lithium, DHE, or Imitrex, which some of you report as helpful. The article posted on the "medical info." page doesn't mention Imitrex/triptan drugs, so I suspect it was written at least 5 yrs. ago, although it's a nice synopsis. Does anyone know of any other more recent articles or studies with good CH info.? Well, I hope my experiences help someone out there. If not, it's been therapeutic for me just to pour it out. Incidentally, I work in the Soc. Security Disability office, & this condition has made me more empathetic toward applicants with chronic pain conditions. FYI, though, it's quite rare for us to find HA sufferers disabled, in part because chronic pain is usually considered treatable by our medical staff, & because there are rarely any associated focal neuro. deficits. Maybe I'll write again with updates on my situation. Meanwhile, I wish for all you "clusterheads" some relief and sleep.
For as long as I can remember (25 years ago) I have had these brutal, suicide headaches. I remember screaming at the top of my lungs, wishing god would put an end to my misery, one way or the other. I went to ER rooms more than I can remember. My parents at the time thinking something was wrong other than pain. I suffered through for about 10 years, dropped out of college, and cried a lot. I finally got help, but they are back. And I am scared. I've got a family now and am back in college at 36. I know I can get through this, but I don't want this anymore. On the kip scale I escalate to 10 almost instantly. I suffer the twinges and lurking all day. Like right now. I have not had them for over 11 years and now I have them. I am sorry all of you have them too! But I'm glad I am not alone. It seems a shame that I can remember every single prescription I have taken to combat this all the way down to the receipe to relieve constipation from the drugs.
Anyway, here I am and I'm glad there are other head bangers and Red Hot Water on the eye packers. (The burning is so intense that the head pain lessens)
I would love to see a list of the scripts you all take. I need to go to the doctor soon
Thanks for listening
Hi, my name is Joe and found this site(about 3 weeks ago).. Thank God there are other people out there going thru this intense pain!!!!Have suffered since age of 20. Am 45 now..I am still in my "episode" (started last week in Sept.) I hope to God they end soon !!! After all the regular treatments the only relief I have found is Imitrex (inj) and Deakote and Amerge tablets. Wish there was a foundation that dealt with only CH sufferers to help find a cure for this Beast !!!! They seem to be lessening in attacks now (1 a day)so maybe the episode is ending..I just keep praying for help!!!
There has to be a common link with all of this though !!!!
I love this website...Thanks to D.J.......
I have been having these god awful things since the age of 17-14 years of hell now! It is so nice,in a wish we weren't here sort of way,to not be alone.wish me luck getting thru them this time........
This is Walter again. I forgot to add that oxygen did nothing for me. But here's a thought - remember, I'm not a physician -- if Clusters are caused by swelling of something, nerves or bood vessels as they pass into the head from below, maybe the swelling is caused by non-culturable bacteria as Dr. Gabe Mirkin (a syndicated radio show and real Doctor who practices in Maryland) says. He's had success at treating many illnesses with long term antibiotics. The subsidence of my headaches has certainly correlated with my taking of the 3 500 mg doses per day of Tetracycline. Perhaps a Dr. out there could resarch this.
It's good to know I'm not alone. Thanks for this space.
I suffered from CH's, about two per day plus "shadow" or lurking headaches every day since October of 1998! Now, for the past four or five days, they've dissipated to occasional twinges. Maybe my cluster is about at an end.
I took a variety of medicinal cocktails prescribed by my neurologist. They included Prednisone, Ergotamine, Neurotonin,Indocin,Topamax,Verapimil,Guaifenesin,Carbamazepine and Sansert. Nothing worked as you might guess. However, I had Lyme disease about 10 years ago and was treated with antibiotics for about 10 days. Recently I was diagnosed with long term Lyme and put on a treatment of 500mg of Tetracycline, three times a day. This will go on for about 3 1/2 months. It's been about two months now, and the headaches have finally all but gone. To complicate matters I'm also taking 75 mg of Nortriptilene per day for the headaches.
It's my sense that the Tetracycline has helped my headaches. It may be the Nortriptalien, but somehow I don't think so. So that's my message for now.
I put in wrong e-mail address earlier.Please do take the time to write to this dr. My husband is so tired he needs some relief for awhile. We carried him to v.a. emergency room last night and they would not give him anything.
This is a wonderful site. I went 3 1/2 years since my last series, I've had them 28 years in total, but I still learned a lot. I am so sorry any one else has to share this nightmare with me, but it is rather comforting to know it's not just my head that does this.
Please help my husband has had no relief from clusters in almost 2 years. The drs that are now treating him just think he is a drug addict and that his headaches come from depression. Please write to Dr. William Yancy Jr. at V.A. medical center in durham,north carolina to let him know exactly what clusters are like. Thanks to each and everyone who takes the time to do this.
Well today i had my first cluster for the day I was lucky it only lasted 35 min. I had a doctors appointment yesterday and he up my dosage of inderol to 80mg, sure hope it works this time. nice talking to everyone till next time. me..........
My clusters started after the birth of my first child. I was diagnosed as having TMJ. Had a mouth piece made. Dont really remember if it helped or not. I drank a lot and thought maybe it was the alcohol. Quit drinking, started college and the headaches persisted. I went into the campus clinic during an episode and was finally diagnosed correctly. Cluster headaches. That was about 13-14 years ago. They gave me a prescription for caffergot. They worked fairly well within 15-20 minutes but could only take so many per week. I think the headaches went away for several years and when they reapppeared I had forgotten what they were? Selective memory? Just thought I was getting horrible headaches. One in particular I remember so clearly. It was winter and my eye socket was on fire, I paced frantically and they went outside and circled the house many times, breathing in the freezing air. I walked until I was ready to collapse. That was 8 years and one husband ago. They dissapeared again until about two years ago. Once again I forgot. Went to dr. and he put me on prednisone. Another year went by and headaches started again. They seem to start out mild and this time my new dr. thought I had sinus infection. After two days of antibiotics it occured to me that the beast was back. She didnt want to use prednisone and put me on imitrex and have me a hefty script of hydrocodone. I used the hydrocodone and the few prednisone I had left and the headaches dissappeared again until yesterday. Last episode was last spring. My dr. moved to Wa. state and new dr. gave me prednisone and caffergot. Started the prednisone yesterday and no cluster last night, but could feel it lingering....almost as if it was wanting to move to the right side of my head. I have seasonal affective disorder and have noticed that before the clusters come on I get mild headaches and a lot of tension in my shoulders moving up to my head. I can relate to wanting to die and feeling hopeless and helpless. So far the prednisone has worked and I pray that it continues to work for me. My mother began suffering from these headaches three years ago and since mine have come back she is waiting helplessly for hers to return. Prednisone gave her no relief. My heart and prayer go out to all of you. Lets hope a cure is in sight!
Well it's that time of year again when my "demons" usually come to destroy my life. Although it's been over three years since my last cycle I always get scared this time of year because I know they are out there. Every time I feel a slight pain around my left eye or if my left eye waters a little bit I think that this could be the start of another cycle. This is the most terrifying feeling that I know of because once the C/H's start up I know that for the next eight to twelve weeks my life is a living hell of sleepless nights and the god awful pain that accompanies the C/H. I started using Imitrex spray a couple of cycles ago and it has helped more than anything else that I've tried. The only problem I've had with Imitrex is that if I don't use it at the onset of the C/H then it's pretty useless. For those of you experiencing the pain right now, my heart goes out to you and I hope it passes quickly. Thanks for the site, and I know this doesn't sound right but to me it's comforting to know that there are others out there who know what it's like to have that red hot steel ice pick jammed behind your eye and twisted around until you just can't stand it anymore. I guess misery loves company. I used to think I was just being a wimp because I couldn't handle the pain but know I realize I'm not alone. Good luck to all in dealing with the "demons".
They're Back!!! After having CH's for 19 yrs then as mysterious as they arrived,they disappeared,3 yrs free of the monsters, then 3 days ago, they started knocking again! I'm still on the roller-coaster going up, they will progressively get worse till they peak, then disappear. Has anyone tried Zomig?
Tim
Hi everyone. It's only been a few years for me -- seasonal, every autumn. This is the first year it got me in spring too. We always thought it was eye-related, so every year I would go the the eye doctor and would be told that my eyes were fine. And the blurry vision and pain would go away on its own and I would forget about it -- until the next time. This time, these past few weeks, the pain was more intense than I'd ever felt it before. Again I had my eyes checked, and again no eye probelms were found. But THIS time, I was referred to a neurologist, and for the first time the suggestion was made that I might be having cluster headaches. Thank God -- this "thing" finally has a name!! (I'm still going for an MRI just to make sure it isn't something else), but now I feel like I finally have a REAL answer! And I'm not so scared anymore... I'm sure those of us who went for YEARS before finding a diagnosis would agree -- it's a very scary feeling not knowing or understanding what's going on in your head, and it's a relief (somewhat) to at least have a name for it.
I'm just glad that I am not alone
Thank you for this site, I’ve had the CH monster as a frequent, but unwelcome visitor to my bedroom for the past 15 years(I’m now 40 years old), during which time I’ve never met another sufferer or indeed anyone who really knew what CH’s are. Which makes the discovery of these pages all the more welcome – it’s just a pity that they have to exist at all!
I’m now in the middle of my ‘Autumn Cycle’ which is the most common time of year for the monster to come calling. ‘It’ managed to score a perfect 10 last night which usually means that ‘it’ has reached the end of ‘its’ powers and will now fade away to regroup and come calling again next Autumn.
My way of trying to deal with the pain is to sit on the side of my bed, feet on the floor, the duvet over my shoulders. Slowly and firmly massage the area above the bridge of my nose up my forehead to my hairline (there are ‘pressure points’ here), the massage then progresses on to my scalp which is rubbed vigorously, whilst doing this take deep slow breaths through my nose and exhaling though my mouth. I also make sure I’ve got lots of cold water to sip and occasionally dab on my forehead and eyelid.
The hardest part is to ride the pain and not fight it - fighting it makes the monster fight back even harder - this is something I’ve trained my-self to do over the years it’s not easy but it nearly always works for me. As yet I haven’t found an effective medication but have relied on the above method for the past five years or so.
Thanks for making me feel I’m not alone and best wishes for a pain free future to you all. :-)
Mike
This is my first post to this site. It’s rather long but it is my story. I hope to be part of this group and offer what help and support i can to those with this curse.
My name is georges and have had CH for as long as i remember. As a child i had these pains in my right eye that were unexplained by any doctor. Can't remember episodes or patterns, but i remember the pain. Probably Kip level 4 or 5. Had them in high school and had them worse in college. Then they went away.
Then, in June of 1979, when i was 24, i was hit with an episode that was legendary in my life. Obliterating pain. Visible pain. I could taste it. It affected every sense and function of my body. It began as a traditional migraine precursor; electric blue lightning bolt descending over my sight. For 2-3 hours, every day or three for a month, i had a Demon make his home in my right eye. By Kip level, it was probably an 8 or 9, but at that time it was like nothing I had ever experienced. And then it went away. Never saw a doctor and never knew what it was, but the term "migraine" had entered my vocabulary.
My family and i always associated the pain with stress. In college, it occurred just prior to finals. In 1979, i was out of work with no good prospect and running out of money. So stress made some kind of sense.
I got a great job in 1981 with the US Air Force. I loved it, and was headache free until 1986, a span of 7 years. The day after Thanksgiving, a slice of Hell came to visit and stayed a month. Most of these were level 7 or 8. This time i had access to doctors and "migraines" was very much the talk. But since it was gone and i felt great, there was no treatment, nor further action. It was officially written off as an eye problem. Everything was fine for 8 more years.
In July of 1994, I was being separated from the Air Force. No job again and my lease was up. The pain came back like nothing before. What happened before hurt, but this was something else. My first level 10. And they came back every few days. My first trips to the ER (and my first shot of Torredal or something that sounds like that). This was also the first time i heard the words “cluster headache.” One of the good doctors at Langley AFB knew about CH! He even said the magic words “We can treat this.” He tried several different drugs and finally put me on prednesone for a couple of weeks with something to lower my blood pressure very slightly. He also put me on Tolmetin (Tolectin), my own personal savior. This pill takes an hour to take effect, but it works! As long as i’m on it, no HA.
It’s been 5 years and the cycle has started again. Every morning and evening. A couple level 5 but no big deal due to my friend Tolectin. Until last night. I started to feel one coming on so took the medicine and didn’t worry. But this one came on fast and hard. Within 15 minutes i was on back rockin’ and rollin, squirmin’ and writhin’; kept trying to squeeze it out of my head. A real moaner. The medicine kicked in right on time, but you know how long an hour can be. Even with the Tolectin i could feel it. All day today, i could feel that son of a bitch trying to come back. We’ll see what happens and keep you posted.
I know CH don’t run in families, but my 11 year old daughter is starting to get pains in her right eye. They’re occurring randomly, but that’s how i remember it when i was young. So far, we have no medicine to give her.
I hope this rather long story doesn’t annoy anyone. I’m not writing to share so much as to encourage others in the same situation to seek help. For years, there was no name to the agony, and now it’s under control. If you’re hurting, like people describe in this wonderful site, get to a doctor. If that doctor doesn’t know what you’re talking about, go to another.
georges kleinbaum
starstuf@home.com
Just found your site,I am just starting an attack of CH so am not looking forward to the next 8 weeks - but all you fellow sufferers know that already! It's interesting reading about all the different methods of controlling/treating CH. I was diagnosed for the first 5 years as having sinusitis before a doctor sent me to a neurologist (a fellow sufferer) who said it was CH, then it took another 3 years before I found anything that would really help. What works for me, for now as least is Imigran nasal spray. These so far have managed to keep an attack down to 30-40- minutes of pain. Definitely better than the hours of agony I suffered I suffered previously.
Hello. I am a 29 year old male diagnossed with clusters in 94, chronic clusters in 96. I spent three years with almost daily HA's. No relief from any conventional therapy, so I tried everything that was available. Some relief from ganglion injections and other things. Trigeminol Rhizodemy in Feb. The results are actually better than expected but side affects are severe. I wish I could have found this site a few years ago.
Friends,thankyou,for your time and efforts,in producing the
most helpfull and informative web site i have ever had the
pleasure of reading.There as been very little to comfort me
during a bad attack,most medication or cures have failed me,
but this web page is inspiring and comforting and proves
there is light at the end of the tunnel.
So please keep up the great work and spread the word about our
disorder,after 4 GPs and 12+ years of these dreadfull pains,
I herd the words CLUSTER HEADACHES for the first time last week.
There seems to be a lack of knowledge about cluster within the
circles of our everyday GPs.If every doctor read this web page iam
sure theres at least 1 millon people out there,that could have
a cure for their mysterious headaches.
Hello to all of you and let me start by saying that I understand more than I wish what all of you are going through. I am a 37 yr old mother off two preschoolers and have had intractable almost daily clusters for 15 yrs. As of yet nothing has worked for me with the exception of minimal releif from oxygen and lidocaine nasal spray, along with a lot of narcotics over the years. I have been on disability for 6 years. There is no way I could continue working. I was a successful Marketing Executive. It is very hard to except that I am classified as disabled. I even went to the extreme in 1989 of having a stellate ganglienectomy at Clevend Clinic. It is the removal of the ganglien nerve on the spine that stops the transmission of pain to the nerve in the brain. Its like a permenent nerve block. Except they forgot to mention that perifial nerves can regenerate. Mine did and I was pain free for onnly 6 weeks. It also left me with a permenent horners syndrome in my right eye. Like most of you I have felt isolated with my pain and I'm at a loss for answers. I do not haave alot of emotional support from family and freinds. My husband thinks I just like to complain and doesnt have a clue as to what I go through just to take care of the house and kids. i was exstatic when I foound this web site. Thank you DJ from the bottom of my heart. Reading about all of you makes me feel that I have finally found someone who understands. THanks all and God Bless each of you. P.S. I never stop praying for a miracle!
Thankyou from a two decader..... Bought a puter to catchup.... Can't believe how copefully helpful it is to find this miserable site. O2? imitrex? hee hee (snorkel under cold water){smiles} Injection's?......wow after years of listening to others, looking for food triggers.They just came every spring and fall for a couple of months per year after year. Heck .........I'm a tad upset with my Doctor right now.....lots in fact.....I mean take a look at the time of year (at least for me) and I'm housebound and there's maybe some ways to suppress the pain. Plus I thought the twenty plus tylenol was working after 45 minutes.... year after year......and you know......it was my doctor who told me I had "clusters"......and then did nothing .....bitter.....a little.....but not anymore....Thankyou
I woke up at 1:00am, it is now 4:30am. I have to be to work in 2 hours, and I am miserable with a cluster headache. Debating to go to the ER, I got on line to read and learn more about my condition. To make a long story short, THANKS!
Left the last comment.
Left the last comment.
Left the last comment,should have read letters first. As Ihave had a long remission I am very lucky. I feel for all
who are not as lucky as I am. As i know they are coming this site most surly will help.
Had these nasty things in 1991.Stanford could not help. A friend who was a retired md perscribed amitriptyline 25mg Started taking pill & also quit smoking. In three months ch's stopped. Didn't know if quit smoking or pill stopped ch's. A year ago quit pill & within 3 weeks they came back. Started pill they left. So now i take the pill and they are coming again. I learned banging head on wall doesn't help. Any ideas out there how to stay ahead of them.
HI,its 3am over here in the U.K. & Im just getting rid of a
headache.Im 29 & have been a fellow sufferer for ten years.
this is my first visit to your site(ive only been on the net
for two weeks)& my tears of pain have now been replaced by
tears of joy & relief.I have been browsing through the other
letters until the pain wore off enough to write this.i can
honestly say that this has been the easyist headache to deal
with because i have found you all.i have tried to keep my
family & friends away from the nightmare side because there
is nothing they can do,i'd rather have loved ones leave the
room than witness a cluster & know there is nothing they can
do.A cluster is a lonley place & its been a lonley 10 years.
It may sound stupid but i now feel safe(who of you can
honestly say they havent wished death would come & take the pain away
pain away).A MASSIVE thanks to you all,you have saved my
sanity if not my life.i owe you all so much.
steve.
I've been a CH sufferer since 1988. Scared the heck out of me the first time. Seems like the doctors didn't know what the hell I was talking about my first few visits. Finally, about 1992, one of them mentioned Clusters. I am episodic. Can't find anything in particular that triggers them. I've had them during all 4 seasons. The CH's are always the same though. My last dance was back in April. Lasted approx. 8 weeks, which is my norm. Finally got the Imitrex injects. If I can catch it within the first minute or so, it seems to work OK. I just found this site a week or two ago. It's funny how you feel like you're the only one having to fight this crap. It's horrible, yet refreshing to know that I finally have someone who understands this. Great job!
I've been having cluster headaches for seven or eight years (I'm a 46-year-old male), and I thought I had it bad. But after finding this website and reading some of the accounts other sufferers have related I have to admit that I seem to be among the luckier ones. I've certainly had monster headaches. I've awakened like clockwork in the middle of the night (usually 1:30-2 a.m.), thrashed about on the bed, moaned and groaned, and generally wished someone would take a sledge hammer to my right temple. But I've never had the day-in, day-out -- not to mention multiple times per day -- level-10 intensity I've read about here.
So if there's such a thing as a lucky cluster sufferer, you can count me in that category.
For the record, I've taken most of the meds discussed in other places in this site. None has worked as a preventive for any length of time. Imitrex nasal spray and a couple of Midrin capsules usually do the job once the pain starts. Nine times out of 10 I'm pain free within an hour.
Other than the headaches themselves, the thing I hate most is not being able to drink a nice cold beer or enjoy a glass of wine. Both have proven to be triggers for me. But as long as I've remained alcohol-free, I've been able to keep most of the headaches at bay.
So to all you fellow sufferers out there, I have a taste of what you're going through. And as bad as it's been for me, I simply can't imagine that it's worse -- sometimes much worse -- for others.
Hang in there.
Hello,
I've been suffering from Clusterheadaches for about 5 years and with them coming and going the meds never have paid any real attention to it. Now finally they have sent me to the hospital where at last they have found out what it was...
Before I took pain-killer like someone takes candy, with the result that they didn't help at all anymore. Now finally I found something that seems to help..I take Maniprex (Lithium) and when an attack comes up I take Inderal...It helps at the moment and I pray to God (although I am not a believer)that I will go on helping for a very long time... I am sick of that bloody pain and people laughing because I am crying when I have an attack..
I am very delighted that I have finally found a good and understanding website for my problem and hope that this site will stay up for another 100 years...
Thanks to the holy person who brought up the idea for this site...
With delighted greetings to you all..
Frank
Hi! I've had CH for 5 years now.I'm now 44. I take Veralin, Cafergot and Elavil every day. I have an O2 tank. As soon as I feel it comming, I use the O2 at 6 liters per min. and it goes away. A very important factor to keep the headaches at a minimum is to keep a very rigid schedule. Get to bed at the same time, wake up at the same time and always take your meds at the same time. There is a correlation with the circadian rhythm. Life is a little better now with the drugs and the O2. Don't give up, you will find what works best for you.
Hi...
I am a 21 year old college student who has been suffering with cluster headaches/migraines for the past 2 years, with no relief from prescriptions. I just wanted to see what CH.com had to offer!! :-)
10 years....and all this time i thought i was alone !
Cluster HA sufferer for the past 2 years!!
Cluster sufferer since I was 18 , now 48.What a long strange road its been.
Hello there,
I am Sylvia and i am very happy that i found your adress.
hi we are new to this site and thank god for a site like this one . my husband has suffered from chornic clusters since he was 19 . he went to all kinds of doctors trying to find out what was wrong with his head . one doctor even had the gall to tell him that life was just painful get used to it. wish we could have given him a nite in the life of a ch sufferer. well anyway one day he was lying on the floor of our house waiting for his next headache when his sister came over and told him she had made an appoint for him with her chiroprator . it worked , stopped his headaches for 9 yrs . at first he had to go once a day every day for a year. then 3 times a week . until finally just once a week .but then we had the oppurtunity for a better job and we had to move out of state . away from his salvation . and the headaches came back within a year . my husbands trigger is hitting his head . so the heaaches start up again . even more painful than before 10 and higher . so we try every chiropractor in this town and the surronding tows nobody could duplicate what our other chiroprator could . so we went to our family doctor and he out my husband on maxalt & predisone . didnt work . so next we try stadol . it is opium based worked for a couple headaches then stopped. we didnt like all the narcatics so our friend suggest her doctor . he is a doctor of natural medicine . he does strong muscle weak muscle testing . and the doctor finds out that frank has a fungus that you get from molds . so the doctor out him on a special diet no sugar,yeast,dairy,dried fruit,fruit juice, or sweetners of any kind and he also gave him a pill to take to help get rid of the fungus . my husband hasnt had a headache in 16 days . we used to be able to set the clock by his headaches they were that regular. well now they are gone . the body works in wierd ways . i hope this info will help other sufferers . if any ? feel free to e-mail me .
I don't know how we do it, so much pain. I'm in a cycle right now. Thank God for imitrex!!! I've been suffering for about 11 years. This is an odd cycle no 10's alot of 5-8's, the oddest is the 8-9 am attacks never had them before although they are infrequent.Sorry to the guy who's Dr. said they will diminish at age 40 I'm 42 and I see no sign of relief!!! I hope the "grey matter" thing pans out I guess it's our only hope right now. I really feel for those who's loved one's have to go thru it with us it must be horrifing to see and feel with us and not be able to do anything. Friends and co-workers who want to call 911 I wish they were never subject to our demon. The special lady in my life is always there for me, thank God, although she can't make the pain go away. She says I'm strong I guess I am. Here's what I once said to her and she reminds me of PMA [possitive mental attude]hang in there.
Hey all, well I havent been here in over a year due to a miricle they just stoped it was great, the depresion went away and I really started to live again, and at 27 I was still young enough to enjoy it, but of course life is not that easy, last month 10-99 I started getting my ch's again, let me tell you I did not miss them one bit, they acually got worse that before or I just lost my pain tolarence, I tried to keep them from my wife for a while because I didnt want her to worry about me, so If I could I would leave for a while tell her that I was going fourwheeling and go park out in the mesa where no one could see or hear me and bang the hell out of my head until I just couldnt take it anymore, some times the pain gets so bad I just dont know what to do, and start to think of ways of ending it forever, but with a new family member on the way I know that this is not a solution, I was in this site about ... a year or so ago and WOW it sure did get big, good job DJ, but when I was in here last time some people let me know of some alternative medicines to take like feverfew herbs and they helped then but now the ch is different somehow they seem alot stronger if someone out there would be willing to send me some ideas I would greatly appreciate it.. Thank you, I'm not happy to be in this site again, and hopefully some of you will never have to come back for answeres like I did..good luck..!!
I had to give up my imitrex injections due to breastfeeding and had my first oxygen tank delivered yesterday. On a lighter note... anyone have any decorating tips on what to do with a five foot, green, chipped, oxygen tank next to the bed? I put a lampshade on it and it just doesn't seem to cut it! Also, seriously any tips on oxygen use would be appreciated. Used it today for a shadow (15 mins. set at 10) and it didn't do anything but I'm staying optimistic! Karyn
Hampton, VA
Hello My name is Dick and I live in Stockholm,Sweden
I´ve been to this site a couple of times mostly to find
out what´s new but when you´re in a bad shape you don´t
really like to sit in front of a computer.
I´ve been living with this hell for 20years and I´ve got
the chronical type.I´ve been forced to accept that I´m gonna
get at least 2 attacks each day.However I got my periods
as well.When it starts hitting me at night so I can´t get
any sleep for long time the only thing that helps is 1 week
at hospital and a huge doze of Cortison.I´ve got the great
luck thoug to have Karl Ekbom as my doctor.I think I´ve
tried every possible thing to get rid of H.For example oxygen under high pressure in a large watertank.It worked
for a couple of times but the effect faded and it´s not so easy to carry a watertank around.I´ve also tested immigran shots before they where released in the Swedish Pharmacie
and it worked good god it worked but after a time the attacks escalated both in numbers and intensity so I had to quit due to the risk for the heart.For 10 years I´ve been eating Lithium and that is the only thing that have had a longtime effect.
Now you know a little bit about me and as soon as I get something new from Karl I will be back.
I work, I walk, I can talk and I got this site so there´s hope
/Dick
I must commend you on this site, the additional knowledge of our
affliction makes me feel more confident and less alone with it.
I got my first attack of CHs ten years ago and have battled with
them two or three times a year ever since. The first time was the
worst for me; I wonder now if I'm just accustomed to the pain. I
spent literally thousands of dollars until a neurologist finally
diagnosed the problem and prescribed prednisone which has been
fairly effective in stopping the attacks. I didn't realize until I
came upon this site that CHs are seasonally related and looking
back, I must agree with that premise. I'm winding down right now
from a bout with them and in retrospect, I seem to recall the worst
attacks for me have all been in the late fall with lesser bouts in
the spring. I have gotten random attacks, but they're generally
short lived and of diminished severity. After reading some of the
posts here, I feel very fortunate. Yes, I know the pain of cluster
headaches, but my time with them has been of short duration compared
to others. For all of you out there, may modern medical science come
up with a cure to what ails you. I won't hold my breath though, it's
probably not going to happen until some brilliant medical researcher
suffers the malady. No one who hasn't can possibly appreciate it.
Best wishes & thanks for listening,
Hi,to all
just diagnose after several years of suffering.
Does anyone have attacks that last 4+ days? 5.5 yrs ago I had a 10 day attack. Since then I get migraines off n on, sometimes going 6 months without one. Right now I've had a headache for 5 days. The PA doesn't think it's a cluster, but I'm hoping it is as it's the lesser evil. Does anyone experience intense headache where they feel they're going to explode?
Thank God I found this site-did not know where to find fellow "clusterheads." Have been suffering for 10 years or so-I am 52- and have tried everything-the injections- oxygen therapy-etc with no relief.
Recently, believe it or not, I was shot in the head twice-I'm a cop. As a result the clusters, which were always left sided, went away-they just returned on the right side-ain't that a Hoot!
I am taking ESGIC (pain reliever) and it used to do the job but no more-Percocette works "some" but not much. Would be interested in any other recent medications anyone may have-Yes i have tried the blockers-oxygen-shots etc-nuthin.
Thanks-Maxey (Baddog37@aol.com)
Great stuff on this site! Thanks to any and all who are responsible!! I've been suffering C.H. since the age of 17. At 43, I'm still holding out for the "cure". Needless to
say, I've pretty much tried everything. I can honestly say
I have great doctors who have worked with me to find that
magic combination of drugs that will get me through each cycle. They say I have been one of the worst cases they've
treated. (lucky me) The most succesful drugs have been
Initrex (injects), high doses of Prednisone, Sansert,
Verapamil and sometimes oxygen. Like most people, I can't
help but worry about how all these drugs will affect the
quality of my life years from now. I can't live without
them because of the quality of my life now. I have a great
husband (he suffers right along with me) and 3 great kids.
I want to be there for them when they need me. As I am
writing this, I am sitting by 2 full spectrum lights at
5:00 a.m. I found this idea by browsing the cluster site.
My clusters usually begin in early fall, just as the temperatures change and the DAYS GET SHORTER! My clusters
began on Oct. 20 in 1998. If I can get through Nov.
without clusters then I will call this my "cure". This will
be such a breakthrough for me, that I'm getting teary just
typing these words. If anyone wants more info from me about
this method please e-mail me. I'll be glad to share.
Hi, my husband is another sufferer, suffered since he can remember, He is now 3 weeks off his 40th birthday and at times we thought he wouldn't make it..!! He has also been through all the medication and presently takes Verapamil and the Migral as soon as he can feel an attack, in the past few years I don't recall a day that he didn't have an attack although these days the attacks are a lot better and we feel probably due to two operations in two years that seem to have helped him. Gavin visited a neurosurgeon at the Royal Melbourne Hospital two years ago, originally they were looking at the trigeminal nerve in the face which seemed to trigger the attack, he's had two bouts of surgery called an RF Rhizotomy (Sic) where they quaterize nerves in the spot behind the eye, they go in through the side of the face under the temple. It was not a pleasant operation but Gavin feels it has offered some relief, I'll get some more info posted on this in the next week and get all the right facts for you, it has definately helped and this is from a man who has contemplated ending his life on many occassions . He;s suffered mostly '10's' or higher and sometimes up to 3 a day. He also uses tiger balm which he rubs on the spot and some on the nostril to breath in. and I thank my strong will and that of my daughter to keep him going to the age of 40. Only last nite we were laying there discussing his state of mind with all this, and there are days when he really doesn't know how he can go on. He has been diagnosed as a chronic sufferer and his neurologist says that he is the most severe case he has ever known in Australia...! But these operations have helped and when I don't see any mention of this in all the notes I've read on this site over the past couple of days it suprises me. although the operation had not been performed in Australia before..so stay tuned and we'll pass on as much information as we can. I don't know if I'm allowed to post the Dr's name - can anyone tell me? With best wishes to fellow sufferers partners, families and friends...hang in there we are always there for you.
Nice to have this site. Thanks!
I have been suffering from clusters since I was 17 and am now 21. I have been on 13 different drugs since the start, and I find that nothing really works. I will continue to remain hopeful though. My neurologist, nor my family or friends, seem to understand the amount of pain I go through, so I thank you all for sharing your experiences. It is nice to know that so many of you out there understand!
Female, 37 yr old. I've suffered CHs, since age 16, every year in late autumn or early spring, with only 3 exceptions: Two yrs were pain free due to pregnancies and another 'appeared' to follow the break-up of my marraige??!!Each bout starts relatively mild (giving me about a weeks warning of their onset), builds to the really unbearable point of around 2 pain free hrs in 24 and then they gradually fade day by day. For 15 years the attacks lasted for 2/3 months, in more recent years this has reduced to 4/5 wks, still agonising but a huge improvement.
I feel 90% sure that my CHs are triggered, or perpetuated, by stress.
Pregnancy relaxes you beyond belief and when I removed my husband, I removed my stress (for that year anyway).
The only management I have found that goes any way towards relief is 'stress management'. During attacks I take no medication at all. I have never found anything to work and they only add to my general 'un'wellbeing at the time. Although I may have moments in some days where it may be possible to work, I now take at least a month off. I use relaxation and breathing, learned in anti-natal, to get me thru each attack and also in an attempt to de-stress between.
I have only ever actually met 4 other sufferers and an observation was that we all had a similar tendency to create stress, panic and disharmony in our lives. The attacks only compounded this and each of us admitted to possibly extending their stay by living in fear of the next attack, believing we couldn't/wouldn't cope, allowing CHs to control us and never attempting to TAKE CONTROL OF THEM! I know only too well how unbearably painful and dibilitating they are and it may sound like madness to suggest that you ditch all medication (if it works for you then for god's sake don't!) but after years of numerous doctors oppinions, endless pills, scans and suicidal thoughts, I feel like I've finally got a bit of a hold of them.
I am a fifteen year CH sufferer. I am currently going through a bout of headaches.
This is one of the few things that I got from my grandfather. He suffered for 30 years, and has not had an episode for the past 15.
I started getting headaches in college and almost got thrown out of a class for banging my head on the desk.
I have been on 63 medications for this wonderful ailment, currently Imitrex (oral). I have been hospitalized twice for headaches.
I have done all kinds of ridiculous things during an episode. Everything from trying to put a pin through my temple (acupuncture??) to breaking
ceramic bathroom tile with my head (Do you think I could get on one of those karate shows?)
I appreciate this venue. Thanks for the empathy. God I need beer, if it didn't trigger headaches.
I was first diagnosed with cluster headaches in 1977 and have been living with the demon ever since. As with most of you the worse part is trying to get people to understand what is going on and the severity of it all. When they first started we lived in northern B.C. where there are not the best of medical facilities. the first thing that I found in ealing with the medical community is trying to get them to differentiate between migraine and cluster. when these first started I was able to deal with the pain by using ergomar and a couple of tylenol. after several yaers I was pain free for 18 months with no headaches at all. I thought that it was all over but they soon returned with much more severity and pain. It was at this point I was diagnosed as having chronic cluster headaches. Some physicians informed me that I was not having cluster headaches because they did not cycle. I had every test that was possible and the doctors went so far as to remove my teeth as they felt that was the problem. They sent me to a six week in house pain clinic to help me deal with the pain and then after told me that I was not showing enough discomfort to be having a headache. One doctor sent me to a specialist that tried a nerve block which intailed inserting a long needle into my throat until he located a nerve point near the spine to inject an freezing. I went through that one three times before they would stop. After that he tried accupunture.I have tried every new drug that has come on the market with no or just short term releif from the demon.One thing that I did find out when travelling in the U.S. was that they have found a relationship between drastic changes in altitude is a possible trigger for clusters. Since in B.C. you are either going up a mountain or going down one it has been recommended that I carry a bottle of oxygen with me. Like most people that have these headaches, I have given serious throught to ending it all just to get rid of the pain which now goes on for months at a time with little or no breaks. A lot of the recommended medications are not for me since I have come down with a heart condition that does not give me long to live anyhow, thank God. Over the years I have researched headaches and have some reference material should anyone be intereted.
I am an episodic cluster sufferer. The current cycle began 7/3/99 and has not responded to any treatment! I suffered a stroke in 1998 which makes many of the medications contraindicatory for me. I am DESPERATE for any and all information anybody has to offer!! I happened upon this web site by chance - and I am so greatful!! Please e-mail me with your input ASAP!! Thank You!!
Hello, I'm 31 years old and have been a periodic sufferer of these things for as long as I can remember. I was diagnosed at 21, but it has been improving for the last few years. I had not had any for two years until last week. I decided I was going to change my life by quitting smoking and going to the gym every day. I think that along with the time change brought on this cycle which started last thursday. (Oh the irony!) Anyway, I started my searches on the net on Monday and found this site. I haven't had any pain above a 5 so far but every time it comes, I have come here and read the info and postings. Got my Imitrex yesterday and am awaiting "the big one" sometime during the early morning this week or next week. Anyway, I just wanted to say thanks to everyone for the comfort I have found here.
Sincerly
Reese
Checking things out.I am almost 53 now and have had cluster headaches since I was 29.
Hello everyone.
I just want to let people know that while the board is down if you need anyone to talk to about your pain, or just have the need to vent and get it off of your chest please feel free to email me.
I have suffered with CH for about 12 yrs and have just finished a cycle. Its so nice to be off of all the meds. I still keep an imitrex pill in my pocket thow. You just never know when the beast will come up and pop you in the head.
I wish you all good health and pain free days.
sincerely
doug lutz
board name doug l
Hello everybody. Today is the first time that I visited ch.com... At the beginning I was a kind of happy to be aware that I'm not the only one with this "gift" but now I'm very very sad that there are so many sufferers in this world. No, I can't tell you how to get rid of it, I'm so sorry about that. In the last few days I was suffering pain like I never did before.. I don't think it can get any stronger... but I'm still alive, thanks GOD. From now on I will imagine that every time I get the pain, one of you is not getting it. Even more, it would be an honour for me to suffer 4 u all if you would not get it anymore as I know so well what it means to lie down in agony... May GOD bless you all, one day we will find our eternal peace... I love you all...
I am looking for info on cluster headaches in adolescents. My 12 year old daughter has suffered migranes and cluster since she was 1 year old.
Hello everyone. I have never known life without a headache. I have tried everything short of cutting off my head. Sometimes I think a head is just supposed to hurt. I find comfort knowing there are others. However I do not wish this pain on anyone.
Have had the horrors since i was 19 nothing,but nothing helps me. this last cycle appears to be the worst yet. I have tried everything that every kind of real or otherwise doctor has suggested.The last was zomug w2hich was ok for about a week, now,nothing
have had the beast with me since age 26 now 48. had them almost constantly for years. used to live in orchard park ny, now live in des moines ia, been here 4yrs. things got better when i moved here went 2yrs with no problem then the damn demon found me. not nearly as often as before though. been living in shadows for 2wks. been through lithium, imitrex, midrin, depacote,cafregotpb, cafregot, darvocet tried it all the old cafregotpb offered some relief but i think it was really because i od'ed on the penobarbitol in it. depecote seems to keep them at level 6 for now. but i know its coming. to the person who was told they get better with age i dont believe it. doctors just dont understand the pain. my first doc in desmoines wouldnt listen at all thought all i wanted was drugs i guess. new doc seems to understand somewhat. unless you have them i guess you think a hangover is bad. i think certain stresses in our lives cause these things and each person has his own trigger. other stresses have no effect although bother you more than the trigger. just one mans opinion but let me know if you agree. good luck guys nice web site.
hey gang, tanks for the info, mayby my doc will understand why i busted his nose.
Stuart is my name Cluster is my pain. This being my first visit, I would like to say hello to my fellow sufferers/sympathizers...... HELLO ALL!! The following is not an attempt to give any advice, but simply a chronicle describing how I cope with pain and how I came to cope with it the way I do. Twenty years ago, I fractured two cervical vertebra. While hospitalized, I developed a bleeding ulcer as a direct consequence of pain medication. Although I had lost 30 lbs. in four weeks and I was being seen daily by my doctor, the ulcer was not diagnosed until my stomach filled with blood. After three months of hospitalization, I went home in a bad state of depression. Eventually seeing a psychiatrist, I was told that one of my prescribed medications was the probable cause. Two or three days without that drug and my number 10 depression vanished. I still thought to find relief for the neck pain. I went from Orthopedist to Chiropractor to Dentist (I read somewhere that my bite may need adjusting) to pain clinics to the practice of "primal breathing". I went from place to place to place in an effort to find someone to cure me. None of them could. Finally, I discovered the key to it all. I myself needed to accept the condition I was in, be responsible for it, and look to myself to improve. Think about this: At this moment, what is the best age you could be? Since the age that you are is the only age that you could be, the age you are has to be the best age you could be. When you stop cursing the pain, damning your fate, agonizing over the unfairness. When you accept it and take responsibility for it, then, you can get through it and regain control of your life. My headaches begin with discomfort in my left eye, then peak two or three minutes later. They remain at that level anywhere from ten to fifty minutes, then they suddenly disappear. The cluster consists of from one to five headaches per day with an occasional day off, for about six weeks. Catching myself before delirium takes over, I tell myself to relax. Biofeedback teaches you to relax and can often stop the progression of a headache. Rather than fighting the pain, I accept it. I totally release the tension in my muscles, especially in my jaw. I inhale and exhale as deeply as I can. Another thing that I find effective is to lean over and submerge my head in cold (not freezing) water, using a snorkel to breathe. The CH's still invoke terror in my heart, agony in my body, and control of my mind, but the monster is not as ferocious.
Great info. I'm still trying to figure the whole thing out but the more I learn and read, the more certain I become in my belief that my headaches are of the cluster variety; waking up at might, severe pain over right eye, nothing really helps yet. I've had some success with Imitrex. The other migraine pain relevers only make me tired. I'm going to give the oxygen a try. We'll see. I'm hopeful that with age, this curse will go away
any feedback you can give me on the difference between and regular migranes let me know i have spent so much. tina
I've been walking with the beast since age 24, and am now 40 with no end in site. My doc says after age 40, they'll taper off and go away. I have lots of experience with meds, esp. imitrex. Feel free to email me.
I am 21 male on my second episode. My first was in sept. of 94.and lasted till jan of 95 i have spend the last 2 weeks trying to figure out how to get rid of it.I am taking midrin with no success if anyone has any ideas on medication i should ask my Dr about please, please e-mail me,I will be greatly thankful.
can anyone help me rid this headache?????
Outstanding site!! I am a 32 year old male and have been a seasonal sufferer since I was 25 and like many of you I to have run the gamut of drugs and treatments. Oxygen,midrin ergotomines,lortabs etc... The one savior for me has been LITHIUM. I undrestand there is some fear of side effects but I have experienced that if taken as prescribed there are no noticiable effects.(300mg 3x daily). The headaches have now become Tylenol tolerable.I pray that this may have been some help to someone out there.Again thanks for A site devoted to A forgotten group.
I am an 18 year old female who has just begun suffering from cluster headaches. I have moved off to attend an out of state university and am in complete agony. Although my parents cannot fathom the pain that I go through, I cannot say that I entirely blame them. I think that in the case of clusterheads it takes one to know one. Thankfully, I have an incredibly understanding doctor who believes that what I am experiencing is an illness. I started taking Maxalt but have moved on to Imitrex in the pill form. I have a doctor's appointment tomorrow after class back in my hometown. My doc. is going to give me injectable Imitrex because I simply cannot take the pain anymore and need a more fast-acting medication. I am thankful for this site. Just knowing that there are other people out there that suffer is an incredible comfort. Best of luck to all in battling this illness. Hadley Marie
Thanks for creating this wonderful site and for letting me know that I am not alone. I have been suffering from clusters for going an three years. They have become chronic and a constant companion in my life. I have been hospitalized twice by my internist and neurologist for IV drug therapy and subsequently went on short term medical leave. I am on a whole host of drugs that seem to keep things under control (but look out when I miss taking my dose by even an hour because the devils come back with a vengence). I take verapamil, depakote, methergene, lithium, diuretics to keep the swelling down, maxalt (to ward off the big ones - it works with a fair amount of success), tylenol 3 and stool softeners to counteract the effects of codeine, and I am on remron, yet another antidepressant that my shrink has prescribed for me - supposed to keep me on an even keel. Sometimes I wonder what it would be like to pitch all the meds and see what life would be like and all the time wondering how bad can it really get - but then I miss just one hour and the ugly beast starts gnawing away inside my skull. I have tried many types of therapies such as oxygen, acupuncture, chiropractor, massage therapy, and even Tai Chi to relax and focus on managing the pain. For all of you out there reading this, all I can say is that I have managed to bear it and am now regaining my life after being absent from my wife and four year old son for three years. There is hope - keep the faith. I won't get into all the gory details, but these cluster headaches haave been slowly
My husband suffers from cluster headaches, and I fear for his life cause I know he would do "anything" to get rid of the pain. I had never seen a grown man in a fetal position in the middle of the night crying for dear life. Thank God for Imitrex (500mg.
I am so stoaked to find this site! What pisses me off almost more than my headaches(*#!!!!!%&%$&%$#) is that NO ONE beleaves that a 15-year old has horrible headaches.
I had cluster headaches for 3to 4 month periods during a 6 year period. I was diagnosed immediately by a neurologist. I talked to him for a matter of minutes and he said with my very ruddy complection and symptoms I had what he called Macho Headaches. We tried several drugs etc. but they just went away and I haven't had one for 10 years. Just wanted you all to know that this could happen to you. I've had major accidents, crushed chest and back but that pain was a walk in the park compared to CH's. I actually got scared just reading your posts in this forum! Have a friend that had the same expierience as me and has'not had an episode for 20+ years. Keep your chins up and one day they'll disappear. I'll be praying for you. Mike
I am 28, and Have clusters since 1994. As of Fall 1999, I'm on my fourth episode. Out of the four that I had the second one was the worst (Fall 1995). This current one is only giving me headaches at night. Things that bring me relief. 1) I have had some luck with over the counter meds. Excederin Migraine worked for me in the past. I took Excederin PM last night after a really painful one, I didn't have another headache the rest of the night. Coincidence? I'd like to think not. Still I use these sparingly out of fear that the headaches may become immune. Regular Tylenol does not work. 2) Cold Air- doesn't seem to abort them, but lessens the pain. 3) Heating pad over the affected area-- lessens the pain. 4) Total Relaxation-- Concentrate on blankness and let nothing distract you. It is obviously VERY HARD to do with these things, but I have aborted CHs with this method! I can't always manage to pull it off though.
I just found this site. I have suffered from cronic ch for about 30 years. The severity has gradually increased over the years, and I presently have 3-4 bouts a day. It feels as if someone has hit me in the back of the neck with a bat and then taken a red hot hat pin and stuck it into the back of my eye (always the right) and ground it around. No one I know comes close to understanding what it is really about. My spouse is supportive but you can tell she is dissillusioned because we can have no social life except family. We cannot plan anything because I'll probably have a headache. After this many years of Drs. and treatments nothing seems to do much good. On top of everything else I have heart disease and have had 6 heart attacks, which eliminates me from many of the treatments such as Imitrex and ergotamine. It's pretty bad when you can get used to the lesser headaches enough to function and people can't imagine your headache can be very bad if you keep going. Life gets very discouraging and I would love to have any input from others who have a cardiac complication to deal with. The rebounds are worse than the originals when I try O2. a tens unit on the neck and temples helps while it is on but the pain returns as soon as it is removed, and you don't want to go out in public with it because you look like Frankenstein or something. I could ramble forever about the frustrations but will just ask for any Ideas that may have worked for others
I've had CHs every year or two for the last 20 years. I also have been eavesdropping at the site for a couple of years and thought that I should at least sign in and express my gratitude to you. I have learned more here than ANYWHERE else. Thanks to all the contributers. Only other clusterheads know how much I appreciate it.
Looking for cause and treatment of cluster headaches.
Thankyou for somewhere to come, I have only suffered Cluster Headaches for two years. I can relate to everything that I have read listed here from other suffers - the intense pain, the fear of going to sleep or taking a nap. The crying like a baby and the feeling of total helplesness. Now I have somewhere to come when I'm feeling down, somewhere where I can share the awful experience that so few could ever imagine. Thankyou.
IVE BEEN SUFFERING FOR 7 WKS NOW -8-10 ATTACKS A DAY NOW IVETRIED ALL THE STANDARD TREATMENTS-IVE SEEN 5 DOCTORS IN THIS TIME -VISITS TO e.r. are almost daily now for demerol- doctors refuse to understand the intencity of this pain - suicide has crossed my mind- o2 doesnt help- migranol doesnt help - sometimes lidocaine helps -but rarely-i have thought about street drugs-cocaine???-hard to believe a person would have to go so far in this country-went to mexico and bought diprospan-betametasona injections-afraid to try this-dont know what it is-do you?? gonna try one more doc. tommorow please reply to art crow-crows6011@aol.com
I do not have cluster headaches however, I am a long time migraine sufferer and it is a comfort to know that I am not alone in this fight for a painfree life. I have uncontrolled migraines that have not responded to any of the drugs I have been given except Demerol. I am looking for alternatives to this highly addictave drug. Any help you can supply is appreciated.
I was so happy to see a site like this devoted to clusters alone!! I'm a little disgruntled with Migraine Foundation! Seems their main mandate is fundraising without offering this level of communication between sufferers! You will understand this comment when you read on. I'm tired of filling out questionnaires at neuros offices where in the 1st 4 questions they ask about "menstral cycles". This includes the questionnaire or Glaxo Wellcome! I've been a C.H. since childhood and once in the workplace, was sent to many many neuros, Eye Doctors, Chiro's, Relexologists, even a Hypnotist! Been prescribed Fiorinal, Gravol, Caffergot, nasal sprays. High Blood Pressure meds like Verapamil, Propranolol and Inderal only made me drag my butt!!! With no results for the problem. Prednisone is 50% successful in breaking up cluster, feverfew had no effect and Oxgen I'll get to. I now have a great interest in SEROTONIN. I've learned on this site that research is being done re serotonin treatment for night time C.H. Which is my problem - every 2 hours or so during sleep. "OXYGEN stimulates the synthesis of serotonin in the central nervous system" - quote from this site. However - after oxygen it takes me a long time to get back to sleep. After years of learning and experimenting I only use Imitrex injections as a last resort for about 10% of headaches. Another 10% are aborted by a small ice pack and oxygen for 10 - 15 minutes. (I keep a custard cup in the freezer to hold a small plastic bag filled with water & tied. This "mini" ice pack fits perfectly in my temple.) 80% Of clusters that wake me during the night (2 - 3, sometimes 4), are aborted with my ice pack PLUS a quick, natural (no drugs), means of increasing serotonin levels and still allow me to return to a natural sleep mode quickly, 10 - 15 mintes. This is not a sales pitch - I'm not selling anything!!! However - I am reluctant to put my secret method in print for fear of being labelled wierd of preverted!!! E mail me and go from there. I'm willing to offer help to anyone who asks. Other men may have discovered this unlikely method and I would also like to hear from them. Maybe I'm not alone!!
I am registering for my husband John. He has suffered from clusters since he 35yrs of age. He is in the cycle now and is on massive doses of prednosone which I am very concerned about. Today, he is finally going to listen to me and stay in bed all day and try the water treatment.
i have suffered from migranes for the past 11 years and in the last year i have not had any migranes but lots of cluster headaches average they last about 10 days some only 2 days . I have headaches about 50% of the days in a month. Can you help please let me know helen
Guess I'm wierd! It makes me feel worse to read about the suffering of others. Why can't we get help? Why don't doctors consider CH an emergency? I've gotten treatment twice (Verapamil, lithium and Imitrex); these are great but why hasn't anyone explained their purpose, at least in laymen's terms? What do the rest of YOU do to help yourselves when a CH wakes you at night? Hot showers? These help me if I start immediately. So does the hot air from a hair dryer directed toward the affected side of my head. I also benefit from holding hot liquid in my mouth along the gumline and breathing the steam rising from the mug. Some toothache liquid applies at the gumline, back of the head and along the trigeminal nerve paths as well as over the affected brow and in the nostril are sometimes soothing. If my head is not too sore (sometimes it feels like a giant boil even beween) I benefit from vigorous scalp massage or pulling on hunks of hair. Maybe these thing s are only distractions and wouldn't help anyone else. Still I'm not sure I would survive the worst attacks without them. I have considered setting a clock to wake me just before the next episode is due. Starting heat therapy can abort or shorten a headache if done soon enough. If I wait too long I reach the tearing, stuffy nose, screaming, footstamping stage of agony so many of you describe. Do you have any self-help hints to share?
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