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Below are the guestbook entries from January 2002. Thank you for your continued active involvement in this site and keep those guestbook entries coming!
Click Here to go back to the Main Guestbook I'm so pleased to have found this forum. wish I had seen it earlier and perhaps I wouldn't have lost my cool and raised my voice at my doctor last week. Will be 55 Mar 8th and have been suffering (I now know) clusters, 2-5 per day the last 14 months - - haven't had more than two days relief in any one week during that time. My "shadow" starts in my right temple, then to the eye and north to forehead and south to neck and ALL in-between. I use heat if available. Hot washcloths on neck and side of face/forehead, 10-12 oz. plastic bottles of water heated in microwave, or submersion in tub of hot water. I have been taking attenelol - - - Dr. changed to varapamil (120 mg) and Vioxx. Concerned about the Vioxx - haven't seen any other posts listing this med. Had a couple days respite when switched to current meds - - duration and intensity - - - but they seem to be coming back to full force. Yesterday, first headache about 2:30 level 6 for about 20 min. Second at4:30 level 4 for 20-30 min. Third at 9:00 - level 8-9 for 60-90 min. Fourth - woke up at midnite with level 8-9 for 20-30 min. My CH's rarely occur in the morning hours (if you don't count "shadows", like now) and, like many of the posts I've read, I have been unsuccessful in finding a trigger besides alcohol which I quit in all forms three weeks ago. Attacking diet/stess levels/ANY other options. I know you understand the frustration and thank you much for this opportunity to vent. I would appreciate an e-mail regarding Vioxx - positive or negative. Thanks again - - we/you are not aloneRichard Nichols <babbleonTn@netscape.net> Crossville, Tn USA Thursday, February 28, 2002 at 12:42:11 (EST)
I broke into tears as i first came here. I know youre all out there. God bless you. Just remember it cant win. Whats some pain anyway
For over 6 years I've been diagnosed as a Migraine patient. After reading your site Today, I'm not so sure anymore, since most of my symptoms fall under the "Cluster Headache" category (although I'm affected by light during my headaches). I'll definitely be consulting a doctor in the upcoming days.
Thank you very much for having this information available on line, for sharing experiences and for the wonderful quiz that you have!
Saludos!
P.S.: I just have one more question. Like in "migrains", are there certain foods that trigger "cluster headaches"?
I have actually been told that my headaches are migraine. Not sure which they are but what I have read they sound like cluster to me. But then I'm not a doctor. I can tell you though that they are real bad when I get them. Some times they make me sick to my stomach and other times they just make my head hurt real bad. They start over the left eye and feel like someone is trying to pound a nail into my head. The bad thing is sometimes I get one when I am working which can be dangerous as I do a lot of driving on my job. When they get really bad I have to get to the hospital and get a pain shot.
i cant believe there are so many people with this already knowing you are all out there that is amazing!! thankyou so much i have had these so long they are hell to live with. i was only diagnosed about a year ago and its a living hell waking up at 2 in the morning all i want to do is cry but that makes it worse!!! happy to meet you alll!!!
Just found the site :).Had the monster for only a year. injured my neck on an accident,several bad disk,the docs say that thats what triggers my CH.I get them in bunches good for a couple of days down for 2 to 3 days.my longest was 3 months straight not a preaty thing. Keep up the good work people if we actually manage to come together I think we have a better chance of being heard."Someone needs to find a cure"talk back soon Danny
Day 47 of c.h cycle, should be near the end of this years attacks.In 23 yrs of episodic c.h Ive got only 1 full year of remission.I no longer hope that we will ever be free of this burden. Appt to see a nuerologist in March, I ve just started on Clarinex for allergies and nasal congestion that seems to worsen with the c.h. If there is a connection between the two its probably very minimal, ive had one without the other.Also for first time Ive been put on a dosage of Prednisone.My Therapy of choice is O2, 10-12 mlpm for abort and ? for prevention. I eliminate ALL alcohol, no smoking of any thing, I dont anyhow. Cut all dairy out of my diet and limit most meats too, NO red meat! Eat fresh fish 3-4 days a week.On a positive note after having made these lifestyle changes the level of pain has lessened from what were commonly #10 on O2 to # 6,7,8 that last @ 20 min on the O2. My history with meds has seen one ineffective drug after the other including Cafergot,Imitrex , Amerge, Maxalt, Fiorinol w/wo codeine,Stadol ( the worst drug out there for sure) Demorol, yep even this wont stop em, Prozac, Paxil, Zoloft in conjuction with many designer tranquillizers. Im at a point in my life where I want nothing to do with Psycotropics,Triptans or ofcourse narcotics.Im keeping with a healthier lifestyle and diet, it might get a little boring but it might also help, its up to us as sufferers to get the treatment with research in trial thats going to better our lives because the DOCTORS DONT KNOW ! period. Good Luck to all.
This last week i have suffered from 4 miagraines or cluster headaches, one in the morning, no pacer, right side of the eye, and 2 in the middle of the night, no visible pacer,on the left side of the eye, and the last one, no pain. However there was a pacer that kept getting bigger and bigger until i had no vision at all out of that eye. I don't normally suffer from cluster headaches, and being 15 years old, i was unsure what it's about. I will visit the doctor but i don't know that they can help. It's a relief to find this site and know that other people suffer and know the pain, and relize that it's not just a 'miagrain' and a panadol may not cure all. :)
I didn't read through all of the posts but I just wanted to write you all and let you know something I tried 2 years ago and it seemed to work for a while anyways.
Someone told me about acupuncture, that it could really help. I was skeptical at first but I was desperate. I'd been suffering for 18 years and I needed something new. I tried most everything. Prednizone seems to lessen the pain for me along with pain meds. But I tried the acupuncture and they finally went away. I'm currently starting a new cycle 3 years later and am going to the doc tomorrow to get on another prednizone/pain medication therapy because I know it works. But the acupuncture seemed to work for a while and even now that they have started a new cycle they aren't as severe as before. I'm making an appointment with him as well again. You need to follow up on these sessions. It's not a one time cure all but it did seem to help. Insurance covers most plans, but even if your doesn't I would try it. Hope this helps someone. Good luck.
Thanks for your web.
I haven't entered anything in quite a while but the headaches still come on every spring and summer. Last year was not as bad and I contribute that to the use of prednizone. It's just Feb so I am feeling the anticipation already. I had a slight heart attack and have a stint in one artery thus I can no longer use Emitrex. My doc does allow me to keep Stadol nasal spray on hand during the rough times.
For all that suffer, you are truly in my prayers.
Sam
Great site thanks so much I cried when I read it so sad so many of you are feeling what I feel, yet so comforting to know I'm not alone. I saw 4 dr's and 2 dentists before getting lucky and finding a locum who took the time and effort to diagnose CH. I am interested to hear if any of you have ever had the same pain while flying? I thought I was one of the lucky ones as I haven't had a problem in 3 years then Wham it's all on again. I'm trying the water trick, Thanks for the helpful tips etc........1 sore Kiwi.
Greetings, hope your weekend was the best ever. Stumbled across your website and just -- on impulse -- thought I'd sign your guestbook. Have a great day. http://www.where-i-find.com.
Just discovered this site and now I'm really depressed. Sounds like the medical community has a long way to go in the treatment of this affliction. I just broke down, went to the Dr. and was put on meds for these headaches. Pretty much as I expected, still in great pain. Wondering if any of you have found a link between not just cheese but drinking skim milk and the pain increasing?
They're Baaaack, after over a year, and you all know how devastating the shocking reality of not being "cured" is. Now I can't even figure out how to access the message board. Help please.
I have ben suffering with CH and "smith & wesson" migraines for a few years now. Docs have tried almost everything, now I'm on my 5th seizure med...Gabitrol. Haven't started it yet....the side effects of these meds really stink. I usually visit the ER about once a month/every other. When these beasts start taking over your life it's horrible. There has to be a miracle out there somewhere. Trying to stop smoking because I know that will help. Any comments or tips would be greatly appreciated! Thanks!
it is great to share all the experience of other sufferes.
It seems that Dr's just dont get the urgency of treatment.
just starting another bout after a 5 year remission.
Hang in there one and all!!!!!
My good news is I've only had one headache in my life,the bad news is it started in 1952.It just niggles along (score 4)for a few days and then(flare up)just goes through roof for another few days
I cannot beleive this site! I have been on it for 2 hours. I heard about it from a family member that also suffers from this curse. Some much good information. I have just started a cycle after being headache free for 2 years. I was looking for some drug information, my last round of medication made me toxic. In desperation I started self medicating myself (steroid taper) longer than the 10 days. I have found some very interesting information. Thanks!
It's refreshing to finally see a site dedicated to CH. I've seen numerous PAIN Web Sites, but nothin' which deals with Clusters.
I've had Clusters since I was 13 years old. Usually the beginning of Spring almost always starts a new cycle each and every year. It wasn't until I was 24, that a wonderful Doctor diagnosed the "Beast". This was back in 1989, and we all know most Doctors didn't even know there was a such thing as Cluster Headaches, back then.
I have tried every medication there is. Imitrex Injection helped wonderfully, but only allowed 2 per week LOL...through my insurance plan.
On a great note, I quit smoking and have not had a cycle in 2 years. Hopefully this lasts...
Hello everyone. i haven't had a CH for about 6 months now. My last bout lasted about 13 days. It had to be the worst one yet. i don't know if it is because I'm getting older or what, but it hurts more and more each time. I remember as a kid when I got a CH, I could barley stand it. Smashing my fist into my eyes didn't help at all. Now, I have a wife and two children and I don't want to let them see me this way. I go to my basement, into my workshop isolate my pain in there.
You know what I hate most about CH's. It's that ever looming fear that one could strike me today or a week from now or even a month from now.
I've had Cluster headaches since i was 8 years old. I'm almost 35 now. Thats 27 years of them. Having at least 1 attack a year. Sometimes three or four a year. When I was 28 years old. I had four that year. One attacklasted 24 days. It was horrible. I've documented almost every attack. I kept track of what I ate, how I felt, what my activities were, and the weather those days. I haven't been able to come up with any clues as to what triggers my attacks.
I don't have any CH's right now, but I know there coming and I am so glad that this web site is available to me.
I want to thank you and all the people who leave messages here.
Wes Mussato
Feb., 2002
Thank you for your very helpful and informative website! Thanks to the information you provided we were able to self-diagnose my husband's headaches. He has the non-chronic type (once or twice a day/sometimes at night) so getting him to see a doctor may be difficult, but I'll work on it. Until then, we are trying the homeopathic, avoiding certain triggers, route. Thanks again for helping us put a label on this problem. We feel a lot better knowing what we are dealing with. Your descriptions of symptoms are very telling. Nice to know we're not alone, although we wish less people were suffering from this.
Hello! I am 41. I started having these back in high school, but didn't know what was wrong. It's nice to know there are others. I am truely sorry you all have to go though this. I'm on day 4 of this cycle. Don't know how long it will last, goes from 3-4 days to sometimes a couple of weeks. I don't think my husband really understands how bad it can be. Thanx for listening. Rhonda
Now I am getting somewhere. I have been calling it my "half-face pain." I have described it as feeling as if I have been hit on one side of the back of my head with a pipe. It feels flu like to me when it comes on & when I have it. How silly I felt saying it was my left side but this time it's the right side! TMJ was ruled out a long time ago. Since then I had given up understanding it and have known no one else who had the same problem. Thanks. I'm finding relief reading this site.
I have been a cluster sufferer for over 30 years and it just about ruined my 20's because I did not get an accurate diagnosis. Finally at age 35 I found a compentent neurologist who was able to finally diagnose me as having cluster headache) and got some treatment that worked. At least now I can get about with some Imigran Nasal spray (I used to use the injections too) and abort an attach if necessary. If I get a cluster, 90% of the time a dose of prednisone and isoptrin will stop the cluster.
I have always suffered from not being believed by medical practioners, who treat me like some kind of neurotic or a drug adict that needs a hit. I have put myself in hospital a few times to try and get some relief but get almost no sympathy much less any treatment. 30 years ago when I first started getting clusters, the hospitals would give you pain killers (some sort of injection..) that would at least give relief from that headache, but not any more. Next time I have to go in I will try and find the energy to make my needs known and kick up a fuss (I wont be a nice patient and suffer in silence any mose ..)
I'm sorry (see adjoining message) - I forgot to say I'm on 10 1mg Deseril (methysergide) per day as a long-term preventative but no result yet. Previously 6 per day did the trick after a few weeks.
I have enjoyed reading your entries - very comforting. I have suffered from CH for around 20 years and it took me very long time to arrive at Oxygen (6-12 litres pm) as the best treatment - usually providing relief within 10 minutes, although usually a second and third 5-minute session is needed during an attack lasting a couple of hours. Since alcohol triggers an attack, I deliberately use wine to bring on an attack while I am at home at night, then I am nearly always free of them during the work day. However - I travel a lot in my work and carrying oxygen on planes is difficult (although I have done it in the past). I keep a small cylinder in Sydney (using the same hotel each time). Since the small cylinder is used up quickly, I use a lower flow rate (4 litres/m) and still get a result eventually. If I cannot get access to oxygen I fall back on Cafergot - the trick is to take it before the attack is expected. Once the attack begins, the body system "closes down" to focus its resources on the pain, so the stomach becomes quite useless at absorbing drugs. I take a couple of 1mg Ergotamine Tartrate (Cafergot) in the evening before my meal (with wine if I wish) and mostly the evening can be CH-free - with a daily allowance for 4 more cafergot if needed. The biggest frustration I find is that no-one that matters (except family) understands CH - even explaining it to the human resources people at work makes me feel uncomfortable because they can only relate to migraine. I have kept in touch with a handful of Aussies with CH and am happy to continue to do so. I'm in a cycle now (1-2 attacks per day) about 2 months and expect it will last most of this year.
I have suffered with these "headaches" for 20 years I have always thought the pain reminded me of how an icepick pushed into your eyeball must feel like the pain associated with these headaches is such a personal experience that its nearly impossible to describe to an non sufferer the effect it has on you and your family.I gave up drinking and smoking cigarettes and didnt have an attack for nearly 4 years woohoo but I have just recently taken up drinking again in a moderate fashion and guess what after only a couple of drinking sessions without pain its back again so I guess alcohol is my nemesis I wonder if there is any correlation between a yeast build up in the gut and these attacks like a sensitive reaction to alcohol by the naturally occurring gut yeast?? I suffer from candida to the extent that it shows up in blood tests and this highly unusual...perhaps other clusterheads have candida problems as well?? I wish all sufferers over the world a clearheaded morning and a painfree life.....
Hello again. Since the last time I posted a response here, I have had another visit to the VA. I got a new doctor that has given a script for Verapamil 120mgs. It took almost a week to get into my system, and I had to rely on Imitrex. Now that the Verapamil is working I still have a shadow but the full blown cluster does not take over. I also have noticed today that the shadow is even less than it has been for the past couple of days. Dr. Schulterman said that I will probably have to take 1-2 pills everyday for now on. But it is better than waking up at 3am clawing the walls. I pray that this may help everyone else.
Thankyou for this site.Have suffered since 1994 with all
typical symptoms.Have tried just about everything.Doc. has
me on 2.5mg Naramig(naratriptan)works IF I get to the beast
early enough. When I'm not in a cluster cycle I still have
some symptoms that are there all the time. Ever so slight
headache at the base of the skull,Slight pressure behind the
bridge of the nose,slight pain behind my left pupil.
Not a new member, but I do have a new e-mail address. I haven't been able to change it or get a message through to D.J. Neither can I access the Message Board anymore. Anyone know what I am doing wrong??
I am having cluster headache. I am 29 I am suffering from cluster for the past 13 years. I have stated a cluster cycle now I'm still suffering
This site is a blessing! I'm a 19 year-old female college student and i've been getting cluster headaches once a year for the past 3-4 years. I've constantly been diagnosed as having allergies and sinus infections and doctors bombard me with antibiotics that don't help. It's 12:19 am and i'm exhausted. I've haven't slept in five days but i'm afraid to sleep because i know i'll just wake up with a killer headache in an hour or two. My poor roomates don't know what to do when i pace the room, cry, moan, and bang my head for half an hour. I thought no body understood the intensity of the pain i feel but its so nice to know that i'm not completly alone in this. This is a wonderful site. Thanks
hello I have these vascular headaches for 30 years. I call them the alarm clock headache. have used egotamine,carfegot,immetrex, amitriptiline,nortriptiline,
injections of demoral, toradol. I have not had any since 1999. I just started an episode 21 Jan to 13 feb total of eighteen headaches.
I had my first cluster at the age of 20 and have had them consistently for the last 9 years. It seems like they usually happen in the fall. For some reason this time they started at the end of January. My wife and I where traveling and I got one so bad that she had to take me to the Emergency Room. The Doc gave me an injection of Imitrex and it went away. Since then I have been taking Imitrex inhalers, but it seems like they take to long to take effect. Probably only a few minutes, but as you know a few minutes with one of these f%&#$rs feels like a lifetime. I have found that when I am starting to get one that I can get into a hot shower and let it run for a little bit, then change the water to very cold, then back to hot. Continuing to do this makes mine go away. Let me know if any of you try this and it works for you as well.
IM 42 and have had these headacks for allmost 8 years now. i was scared to death, the first time.i remember the time. i thought it like myhead was going to explode. but the bad part was it was all on oneside of my head.just my left side.i feel for anyone that his this, because i can understand how someone would want to die at that point. I WAS tryin to explain to my boss at work,that i havnt slept in like 3 nites, and how i felt, i know he thought i was crazy. i was afriad to sleep, thats when i got them the worst. im off today because, it was so bad last nite. most times, i just walk in the back yard, .BELIVE ME SO SCARED OF THESE. every year i go to the. noraligest,he allways changes the medicine. but it dont do nothin. just time. mst tmes between 8-12 weeks. and sometimes, i get them twice a year. god i just wish they go away
I'm soon to be 42 years old and have suffered from cluster headaches for the past 22 years. They started shortly after a car accident in which none of the occupants were injured (or so I thought). A chiropractor that frequented a cafe that I worked in convinced me to pay him a visit which I eventually did. I got INSTANT relief, however, every October, just like clockwork, the headaches returned. I would visit the chiropractor again, sometimes twice a day and always got INSTANT relief. The headaches generally would come and go for 2 to 3 days and then go away until the following October. Two years ago the headaches once again showed up in October and this time were still continuing 6 weeks later! I went to see a specialist as I was certain that I had now grown a tumor the size of Texas in my head. After taking some x-rays and doing some testing, I was given a clean bill of health and instructed, yes by a medical specialist, to visit a chiropractor. At that point I changed chiropractors and visited one who performed acupuncture. At the very first visit, within the first 10 minutes, the chiropractor said that he could tell just by looking at me that my head literally was not on straight. He used an activator to align everything and as I was walking out to my car, the headache returned and so did I, right back into his office. He had never seen a cluster headache actually happening and was truly shaken. At that point he checked to make sure that everything was still aligned, which it was, and decided to immediately do some acupuncture. He placed one needle in each hand and left them there for approximately 8-10 minutes. I continued to see him for a few consecutive days as the headaches were continuing. After they stopped, I have religiously made an appointment with him once per month and have NOT had even ONE headache since December of 1999! I do not think that chiropractic alone can cure this problem as I had tried that for the previous umpteen years only to have the headache return. I think that the acupuncture has something to do with it, what, I do not know. One very helpful piece of advice that he did give me was when a headache was starting to quick put an icepack on the shoulder on the same side as where the headache was beginning. I was very reluctant at first but it was unbelievable when it actually prevented the headache. Who would've thought that by icepacking my SHOULDER would have anything to do with my head. I was to leave the icepack on for 10 minutes and leave it off for 30 minutes. I was to continue this regularly for the first day or two or until the starting of a headache no longer existed. I DID ask him why the shoulder and he said that by putting the icepack on the shoulder, even though my shoulder didn't even hurt, prevented the headache from ever reaching my head. I don't understand any of these treatments, nor do I even care to. All I know is that it has worked for me and I haven't put an icepack on my shoulder for over 2 years because I haven't even had a START of a headache.
i have suffered from the beast for 2 years
this website is great even if i never visit again(i will)it felt so good when i checked out your "where we live" section it feels so good knowing i'm not alone in this, even though it's unfortunate other people are going through this. i wounldn't wish these things on my worst enemy. i'm 28 and have been dealing with these since i was 18 i'll NEVER forget my first one. i haven't gotten them in 4 years but still lived each day waiting in fear that they'll be back and here they are again after all this time. if i had the guts to kill myself i would but i'm afraid they'll follow me in death. sounds bad i know but that seems the only answer. well thanks again for making me feel a little better about this! what doesn't kill us makes us stronger...........i guess
Hello again, I found this site back in Oct. and it really helps
to have so many other people that know what you are going thru!
I live in a very small town and you know everyone. It's been 6
years now with this headache. I really tried as hard as I could
to keep working and not let it take over from life.(wrong) It is
so hard to smile and act normal when you wish your head would
just explode, and people say how good you look. You want so bad
to say please take my head and see what it's like. I was always
on the go, working full time, being active in my childrens
activities when they were younger and just being happy with life.
There were many of times that I thought if I just ended life and
I would no longer feel pain again. Can I do that to my family, no
it would kill my parents, and my daughter is getting married in Aug.
and I hope to someday have Grandchildren. My son and I have became
very close in the last few months(we were close before, but he
found out that mom will always be there for him no matter what.
I guess I should be happy because I went almost 3 months without
a trip to ER until Saturday night. It's so hard to tell these Drs.
what you are going thru,6years of pain, pain stays daily at 7 for
over 4 years now, but watch out when it goes to 10! They look at you
like your nuts because you can't sit still and feel like banging your
head into the wall. So we have a shot of demoral and wait 20
minutes and the pain is still 8, but I just want to go home
and pray for a little sleep. I did go to Mayo Clinic for a couple
of years, but they tried everything they could do and told me
there was nothing left for them to help me. They did mention about
going to Diamond Headache or Ann Arbor Clinic since it's an inpatient
program. If I knew that it would work, I would go tomorrow, but I just
keep thinking, what are they going to do, that I haven't already tried?
If anyone has been thru one of these clinics, would you please e-mail
me and tell me if you had any luck. Thanks again for this site knowing
there is really someone that knows what we are going thru and I thank you
for giving us hope and listening.
I'm not sure if I have ever filled out foum before. When
you are in the middle of getting cluster's your not to sure
about anything. That's where I'm at now, In the middle of a
run. Been getting cluster's for 32 years, I can remember all
the bad one's to. I have been lookin around on the page for
information about methadone. My doctor said I should try it.
He say's a few paients' of his tryed methadone and it stopped the headaches. Most information you find on methadone is drug problem releated.
My message should read August 2001, and not August 2002!
I am so relieved to have found this site, and to see that there are others out there who can understand what I have gone through.
I had my first experience with cluster headaches about in August 2002, lasting about 10 weeks, and very severe. I think the worst thing about it for me, (aside from the pain), was the fear I experienced. Not knowing when another attack would happen, or how bad it would be was so scary, and I did not feel in control at all. I had just got a new teaching job, and lost it because my doctor could not say when I would be 'fit' again. At least now I know that there are so many other people out there who suffer from the same type of thing. It is a great comfort.
I'm a 42 year old male who's been dealing with these horrible, agonizing clusters since I was in 9th grade - 28 years! In the begining no one knew what they were. Many didn't believe I had anything, some thought epilepsy, some allergies, none was even close to the truth. With out the correct medication in those early days I suffered with 2-3 month long cycles every 9 months to a year. Finally in 1983 I was properly diagnosed as having cluster headaches. I was given caffergotPB (sp?) which, for me, was about 90% effective. It was my miricle drug! Since then the cycles last
6 weeks or so and go away for 2-3 years. I'm currently 4 weeks into a cycle and it's pretty damn bad - made all the worse because my caffergotPB is no longer made in oral form (supositories are a bit too inconvenient for me)! I've lately tried imitrex pills, imitrex nasal spray and maxalt-mlt, none of which has been more than 70% efficient. Besides, all of those are so expensive my insurance only covers about 10% of the quanity I need esch month. I'm in a bind! Last cycle I tried caffine and phenobarbital (the main ingrediants in the caffergotPB) with few positive results - maybe the amounts were wrong. Has anyone else had luck with phenobarbital? Well, guess I've written enough for now, thanks for any help any of you can offer.
I am so thankful for this site. It is great to learn all about cluster headaches so I can teach my doctor how to take care of mine. I am 41 and have had them for 2 years, happening in the winter. It's either the dry air or the coldness that brings them on. They are aggravated by sodium. I spent last winter and this in the ER and going back and forth between all kinds of doctors. They couldn't figure it out and were quick to suggest anti-anxiety medication. I fought back and demanded to be taken seriously, trying one last time to describe the horrific pain. Finally, I got the diagnosis of cluster headaches. I am glad to know what I have but now the process begins of how to treat it. There are so many medications out there and you have all been so helpful in saying what works for you. It seems like I've always had to tell the doctors what I need so I have the resources to do that through this great site. Thank you!
I personally don't have problems with headaches, but my precious Bob had a ceberal anursym Dec 15, 2001 and died. I guess I really don't understand since he really never complained about bad headaches before. He did have headaches every now and then but nothing that severe. I really feel for all you people with migranes. I do have a sister who has bad migranes. She has lived with them for 22 years now. Bless you all!
I'm in a cycle now,would have been 3 years in March 02!
whats most frightening to me is over a few decades of suffering like most of us know, we've lost a great deal of our lives to this curse.at 2-3 mos each year , im nearing 4 yrs of accumulative misery and suffering.Im a professional artist, highly collected around the world and happily married to my wife of 10 years,i live in one of the most beautiful places on the coast of california and yet when the furnace lights my skull on fire , my death is a lovely thought.Has anyone seen the movie PI, the character Max suffers c.h. and graphically portrays what i fantasize about, to finally drive a drill bit into my skull.
I have been having cluster-migraine headaches for 10 years. I've been on so many treatments! Lately Pamelor is helping. I use Imetrex when I get a break through headache.
I am 61 years old and started with cluster headaches when I was about 48 - 50. It took 3 doctors 3-4 months to figure out what was happening. Finally a neurologist put me on Calan/Verapamil and the headaches stopped. This past month my insurance provider (CIGNA) told me they wouldn't provide coverage for the Calan any more, they considered it a step type treatment (??). My cardiologist put me on Lotril which is a CCB & ACE inhibitor. After about a week the headaches came back called the doctor and he put me back on Calan and the headaches stopped in about 3 hours!! I have a doctor appointment today, now we have to find a new drug, this ought to be fun! Right now I am on Calan and Acupril. I had a Aortic Valve replacement and 4 bypasses done 2 years ago, my doctor put me on Acupril after the operation.
Here I am again.....5 am.....second bout this evening....first one at 2:20. These two lasted only about 20 minutes each... reaching a pain level of about 8. Usualy they always hit a 10....and last 2 hrs...i am grateful for the non pain time. Dang, imagine what they did to get rid of the beast in medival times. It really feels like its got a mind of its own...this beast of pain...its a monster.
I live alone...and being able to come here is a wonderful thing. Oh my...I am not going back to sleep...im exausted...phisicaly and mentaly...but no way am I going back to sleep...to afraid.
im 36 now , the SKULL FURNACE ,ignited when i was 13 i use o2 almost exclusively as treatment when the Furnace fires i pray for my own death
Finaly...people who understand!
hello all, I am a 44 yr old male and have had eposodic ch since my early 20's. Not being very good about going to the doctor, I always deal with an active period on my own.
They used to come once a year like clockwork in nov...my birthday is in november...know wonder i never looked forward to my b day. A few weeks of ....well...you know....and then with a click of the neck....pooof gone for a year. When i hit my 40's....my remision started lasting longer...anywhere from 1 year to 3. I suppose i am lucky compared to what i learned today by reading some of what others go through. G-d
bless us all.
for me....it seems that i am in a shadow state most of the time during an active period(when not in an acute attack...which usualy lasts 2 hours at a 10[kips scale]) They come from anywhere between 1 every 2 days up to twice a day...the 12-3 am is practicaly a sure thing.
otc meds....waterwaterwater...deep breathing...ice, sometimes can abort an acute attack...but i never really know if its the things i do, or its going on its own.
I am currently in an active period...its been 2 weeks, I hope i'm 1/2 way through, Tuesday night's attack was one of the worst ever. I was shaking uncontrolably from the pain...
I wanted to cut my head off...picked up a knife..put it down
and paced and prayed and yelped until it went to a 5(kips scale) and then passed out at 3 am ...up at 6 for work, I made it through the day...barely. Afraid to sleep most of the time.
What can i say....i love you all!!!
Being such warriors of pain is something few understand...bless us all.
And thank the lord for this website!!!!!
My name is Theresa. I have been suffering from Migraines and cluster headaches for the past 16 years. The past several years they have been getting worse. I have tried everything I can think of to get rid of them. I have kept a diary for headaches and have discovered that when I come in contact with perfumes or colognes I get a headache very quickly and depending on how long I'm in contact with it, depends on the severity of it. I was around a woman once that had so much on that my eyeball swelled out of it's socket. It took me 10 days to get rid of that one. I'll tell you that has to be the worst one I've ever had. I would really appreciate it if anyone else out there has discovered they are also sensitive to fragrances if you could please e-mail me. I'm trying to get enough names together to take this to Washington, to see if there could be something they can do to regulate the perfume industry. Please help me if you can. Thanks.
I am 43 yo. Started getting these monsters when I was 23 or so. Mine last for period of 4-6 weeks. They start off real mild and build in intensity. I have tried all the medicines and remedies,, sorry to say nothing stops these things. But I use an Ice Bag and focused breathing sitting in front of the computer. If I focus on something besides the knifing pain it helps me alot. I will also use oxygen from time to time. Oxygen is a corrosive and is not good for extended use. It will (oxydize) your throat and lungs.
I just found this site and am relieved to see that ther are others like me out there. I am in the later cycle of a headache cluster right now. I decided to peruse the internet to see what was out there on this topic. God Bless all of you that suffer with this awful thing. Keep telling yourself that it could be worse. And believe it!!!
Larry
im 44, first attack was when i was 19/have 1000000/hours to tell but dont wont to waste your time! from 19/to 27/ saw neuroligist/physcs/md/all to no avail! taken too many medicines too list/nothing has ever stopped the devils yet! my dad sufferd for 25 years with clusters/so there is something to say about that! inherited no!allergies of some sort /i have come to beleive something of the sort/ cause i know certain smells can set me off and then were off to the races once again! my dad same way!cant wear cologne,cant bathe with scented soaps cant use scented tissuses, too afraid it will set me off! so there has to be a connection to the nose/sinus/something/of course have sufferd the dreaded out of the blue classic that just wakes me up and were off again! or the classic they just come out of the sky for no reason at all/ they just come when they want too. not seasonal for me i have had clusters in every month of trhe year!so who knows /doctors have many different oppinions about that/who cares/ all i know unless you have had 1/ you just cant grasp the intesity of the pain. i have only known 1 other person that knows first hand about the pain my dad untill now/thankgod for this site. i wish every1 well who suffers from these dabilatating attacks/clusters.my prayers go out too all familes/victims of cluster headache suffers.
I am in a cluster right now and wish I could just go to sleep and not wake up for a month or so. I wish there was a cure. I have tried everything from surgery to numerous drugs. Thanks for understanding, not many people do - including doctors!
I have suffered from Cluster headaches since 1965 following trauma to my head from a motor vehicle accident while in the Air Force. my life has never been the same since. I realized that with cluster headaches, I needed to find a different occupation aside from automobile mechanic. I left the Air Force in 1969, earned my B.S degree from Florida A&M University and Juris Doctor degree from Catholic University.
My latest episode of cluster headaches started in Pensacola, Fla. over the Christmas holidays and lasted through January 27, 2002. I had to go on complete bed rest because the headaches recurred every 4 hours during the day and approximately 3 a.m each night. I was paranoid about going to sleep or even dozing. I used Tylox, Stadol, imitrex injections, and took up to 60 mg of Prednisone daily before finally geeting relief. My colleagues assumed my legal duties while I was actually absent from the office. This was by far the longest extended continuous period of cluster headaches I have undergone in ten years. I hate the impact it has on my wife and daughter who watches helpless while I suffered day and night.
I have suffered from the Beast for about three years. First of all it would only be one headache a week, but it has know got to the chronic stage of once or twice a day. I cannot remember the last time I had any remission, it just seems to go on and on. As many people have said, and I only found this website yesterday, it is not just the sufferer but one's partner and family.
Living in such a small place I would like to know if there are any other sufferers in the Channel Islands as I would like to maybe speak to them as I feel so alone. It is ok trying to talk to people but very difficult for them to understand what you are going through. I also feel that doctor's seem to know very little about the problem, and we are left to"stew in our own juice."
Please if there is anybody out there from the Channel Islands I would love to here from you.
Thanks for you support.
Derek
I have been a sufferer for 25 years, and at the age of 47, I have not yet found a way to relieve the monsters'calous rampage.My attacks come to visit me,every 30 months or so,and it seems to be building in intensity.This time, I'm giving "prednisolone" a go,and may take 2 weeks to realise any effect.The pillar of hope is being chipped away at its base,after every disappointing failure.I will post the results of the outcome.
Paulo
Well, it's the day after a horrible attack and I am exhausted!! The medication that works the best for me, Cafergot, cannot be taken anymore this week, as I've reached the maximum dose. The other medication that my doctor prescribed just made me have the excruciating pain in "slow motion". My wonderful husband tries to help me, but I end up being annoyed with him because my pain is so great. I need a cure....not just pain medication. I don't want to go to sleep tonight at all....maybe if I don't sleep then it won't come.
Signed,
Exhausted in Atlanta,
Susan
hi, my name is Ian, 38 years old, male and have suffered from clusters for nearly 20 years. I actually cannot remember not suffering. When my headaches started i hadn't heard of clusters, indeed it was only years later when delving through medical books that i came across the term.
In the last couple of years the severity and frequency of my attacks has lessened. I haven't been on any different medication to account for this.
My headaches usually occur from about two weeks before Christmas until about the middle of February. This has happened for the last three years. Before they occured twice a year for up to 3 months. They usually occur without fail 2 hours after I go to sleep occuring for a few nights on the left side then on the right. i can identify with many of the vivid descriptions of attacks on this site. I have even got some of my own descriptions. Twinge (level 1-2), mild (2-3) normal (4-6) "stonks or stonker" (7-8) "superstonks" level 8+ cursing,headbanging etc.
In the last couple of years i have only been as bad as a 7.
i would to share a couple of experiences which often happen during/preceding an attack.
The first is that I often have a very weird dream just before i wake. In fact sometimes I wake and can recall the dream without appearing to have a headache then the headache arrives within a few minutes. This actually acts as a warning of an impending attack.
Secondly about 10/15 minutes into an attack i often have to rush to the toilets with "the runs".
This is the most dispairing part of my attacks especially if it occurs during a bad attack. Sitting on the toilet when you want to be pacing the room.
When I go to bed and know I am due an attack, I even leave out my "heed" kit. Consists of damp cloth with ice ready in fridge, pain killers, tea bag sugar and milk already in cup.
Ice applied to the head and cups of hot tea seem to lessen all but the worst attacks. i usually pace around the room with ice applied to my head ,holding a cup of tea.
During an attack i have always got to be alone and become very agitated by sound. Intermittent noise is a lot worse than background noise.
One more thing. the most annoying thing about clusters apart from the pain and disruption is people coming out with advice like "just ignore it and it will go away".
I know they are trying to be helpful but they don't know what its like.
Regards
Ian Linney
I am a 36 yr. old mother of 4 cronic cluster suffier since the age of 17. I was finnally diagnosed 6yrs. ago after the birth of my 3rd child.Tons of meds and countless docters later hear I find my self in a bad episode. My doctor wants to hospitalize me to break the cycle,since the predizone,verapamile,cafragot,zomige and serteke are of little help.I guess I have no other choice. I have yet to ever meet anyone who suffers these unbareable bastards.They truly run my life.They wake me from a sound sleep and are ever presant first thing in the morning.I am so glad I found this site. For the first time in my life I'm not alone.
Hi, my name is Eleanor and my husband suffers from chronic cluster headaches. He has been unable to work for years. I have been looking into the Canada Pension Dissability. I was wondering if anyone out there has applied for dissability. Our life has been hell for the past 2 years with no break in sight. It is so frustrating and it kills me to see him in such pain. The Dr's are still experimenting with all types of medication but so far not much luck. This website has been helpful. Thanks! ELEANOR
HI Clusterheads! I've been a clusterhead for 15 years.The first 3or4 without a diagnosis,ouch!The first treatment consisted of antihistamines and cafergot.I thought this was working until I had 14 headaches in 1 week.14 cafergot pills in 1week exceeds the limit,blood flow to my legs was being restricted to much.Next my doctor added propanonal{preventive}. This worked ok for a few years.I became tired of all the dope and demanded a cause for the ch's.I seen a chiopractor for neck adjustments.No relief.I seen a ear nose and throat guy no relief,except I read a pamflet about acid reflux causing pepole to think they have allergies.So I devised this expreiment for my self.Dont eat and take antacids.Bingo!ch was gone.I related this info to my doc and he prescribed metoclopramide,moves food through your stomuch quicker.This helped too.At a certain part in my life I was a very angery divorcing guy drinking beer heavily and not eatting.CH also dissapeered during this period.Apon recovering from alcoholism ch returned.A nurologist prescribed sancert2mg 9per day.This worked good for 6 months then discontinued for a 2 year remission.Spring of 2001, heavy pollon in my area brought back ch.Sancert was prescribed,2mg9per day.I went from 6 to 1 ch per day.I complained and was prescribed Depakote 1500mg per day.This is so much dope I can hardly drive my car.I took it apon myself to decreese to 1000mg per day.This is more manageable.I'am still having fairly heavy warning signs but thats ok.It seens like the older I get the harder ch is to battle.
Hello fellow C.H.'s, the demon found me when I was 21 I'm now 39. Tried all types of pain medications and oxygen nothing works. Now if I catch it in the beginning stages Zomig will kill it, but when you wake up at 3am (when the demon likes to strike) Imitrex is the only thing that will help. It seems when each episode come, the h/a's are getting worse. I have crawled on the floor begging my beautiful wife to just shoot me in the temple. She tries to ease the pain with massage, but doesn't work. Holding me by the hand, she becomes as much as a victim as I am. We often forget when we hurt to this extent, so do our loved ones. I also have my daughter and son leave the room so that they don't have to see me writhing in the pain. During the good times (anytime without a headach) express your love and devotion to your mate. Like I said they are victims of this devil also.
I want to thank everyone for sharing their experiences and most of all everyone that got this site for us. Only we can understand what it is really like. And for those in the medical profession that chew on you for going to the e.r. because it is not an emergency, truely should find another field.
I've been going to the V.A. for treatment for the past 11 years. They are more than happy to give the Imitrex for the pain, but they don't seem very interested in helping to find the cause. I read that only approx. 1% of the population has this curse, so chances are no one will every take it serious and try to help us. So all we have is each other and our family.
I wish everyone for a pain free tomorrow.
Hello Clusterheads. This is a red letter day for me. Discovering your support group 17 years after developing cluster headaches is so exciting for me I can't describe it. Not that I would wish pain and suffering on any of you, of course, but I've borne this wretched condition while feeling very alone indeed. I've never met, or spoken to, another cluster headache person. I've only heard of one - a brother of a colleague of my husband's. Perhaps not surprising in a country of about 20 million people.
The conventional medical profession is neither understanding nor helpful as a rule. In the beginning, when I hadn't heard or read of cluster headaches, I was sitting in doctors' surgeries describing my experiences in terms of textbook descriptions of cluster headaches yet none of the drs were kind enough to tell me that my unique condition had a name of its own. To this day doctors refer to my "migraines". One silly doctor told me recently that I didn't have cluster headaches: I had sinusitis !!!
Initially a dr told me "Everyone has headaches," "We all have our crosses to bear," and when I asked him for Cafergot Q he told me "That is only for the bad cases." Heck, I was unemployable, unemployed, thought about suicide every day for months on end, having two CH a day every day for 6 wks, 2 wks off, 6 wks on, 2 wks off, etc. etc. but ergotamine tartrate was "only for the bad cases".
In case I sound as though I'm complaining, I'd better say that I've been very lucky. My CH proved to be related to food allergies which meant that I was able to avoid offending foods and reduce the severity and frequency of my symptoms. Nevertheless I went from 1985 to 1993 before I was prescribed appropriate, effective medication.
My first lucky break occurred as a result of my occupation. I worked as a pilot doing aerial survey in light aircraft which meant that I had to use a portable oxygen system which consisted of a tank with an altitude dial (i.e. controlling the flow of oxygen according to how high we were flying) and a rebreather bag. The nosebags we used looked the same as the ones you see in WW2 movies. I think they were the same ! The upshot of that was that whenever we flew above 10,000 feet we weren't getting as much oxygen as we really needed, and we might be out for 5 to 6 hours on one flight. I'd be very busy on initial climb and sometimes would be late putting on my oxygen mask. As a result I'd get a cluster headache, i.e. a single headache that did not reverberate from day to day. At some stage I'd been prescribed Neprosyn (naproxen) for a painful neck, and over time in 1986 or 1987 I noticed that I wouldn't develop a headache, when circumstances suggested I would have, if I'd been taking Naprosyn for a few days before the flight. I also noticed by chance that if I was already in an episode I could start taking Naprosyns with the result that the episode would be shortened to 3 days or so. However I couldn't use our oxygen tanks to stop a headache because the tanks weren't capable of delivering 10 litres a minute for 10 minutes. (Is that the flow that some of you people use to stop headaches?) Thereafter I used Naprosyn as a preventative and treatment for cluster headaches, but every six months I'd have to increase the dose and by 1993 I was taking 8000 mg a day with limited effectiveness.
My second stroke of luck was hearing about a cousin in Tasmania who had had a headache for 4 years. She had been investigated thoroughly because of brain tumours in her/my family, and after 4 yrs one of her drs hit upon the idea of testing her for food intolerance. Result: uncovered reactions to Vegemite (a yeast spread), oranges and a few other foods. Armed with this info I asked my drs to refer me for similar tests. They refused, reiterating that my headaches were all in the mind, stress, tension, doing too much, hormones etc. etc. One dr said the cause of my HA might be food intolerance but I'd never find out which foods were the problem. I was suicidal (again! still!) but now know I was lucky not to hv been sent to an allergist because the methods used by allergists here would not have uncovered my problem foods, and I would have concluded, erroneously, that I was not allergic to certain foods that were in fact at the root of my symptoms.
My 3rd stroke of luck was finding by chance a book called "The Migraine Revolution" by British Dr Mansfield. This bk pointed me in the direction of a very old elimination diet method which was initially difficult to grasp but methodologically very nice and effective. Thus in Feb 88 I proved I reacted to the tomato family and wheat. I used avoidance but developed reactions to about 3 new foods every six months.
4th bit of luck was in '93 when a new dr who had migraines herself prescribed ergotamine tartrate (Migral), Sandomigran and the new Imigran. This Dr Cadzow was a Scot, trained overseas, totally different to Australian-trained drs. She taught me to jump on every HA immediately it started, so as to shorten the episode. I cried when she went to join the Royal Flying Doctor Service in the Northern Territory.
5th bit of luck was hearing Assoc Prof Tim Roberts on the radio. Prof Roberts is from the Uni of Newcastle in New South Wales, at the time organizing a world convention on chronic fatigue syndrome. He said that 80% of people with CFS also have food allergies. I moved heaven and earth to go and listen to him speak (standing room only), as a result of which I was able to address diet in order to combat food allergies and headaches. Omega 6, omega 3 essential fatty acids, intestinal candida, leaky bowel syndrome etc. etc. All of these approaches helped.
6th bit of luck was accidentally being sold a book by British author Lesley Kenton about coping with menopause without taking HRT. Unfortunately I narrowly missed the visit to Australia by Dr John Lee of natural progesterone fame. Armed with this new avenue of attack I quit taking the pill. I got catastrophic hot flushes which made me faint and collapse, but after a few weeks I was almost headache-free. Furthermore I was able to get off the 3 Sandomigran a night without paying the usual penalty of a 24 hr/day 10-day headache which followed any attempt at reducing my dosage of Sandomigran.
I couldn't find a dr who would prescribe natural progesterone. Yam cream gave a little relief, and after a year when I saw a gynaecologist about an ovarian cyst he bullied me into trying Hormone Replacement Therapy. I started with injections of oestradiol in 1997 and enjoyed 5 weeks of sheer bliss. Then came 5-6 months of continual headaches, maximum dosage of ergotamine tartrate and as much Imigran as I could afford at $30 a tablet. Sandomigran came to the rescue but I was back in the mess of having cluster headaches in response to solanaceous plants, wheat, rye, alcoholic drinks, some cheese, etc. An episode would normally last until my body had eliminated all traces of the offending food I'd eaten in a weak moment, but after a while I had CH every day for months. The only answer was a week's fast on lamb, pears, trout, avocado, zucchini, carrots, bottled spring water and rock salt. The immune system's holiday. I needed to get on to natural progesterone so I could get off the HRT and off the cluster headaches again.
7th bit of luck was going to a bookshop to meet author Sherrill Sellman who told me of a compounding pharmacist in Melbourne who in turn gave me the names of 6 physicians who prescribe natural progesterone. I chose one who I thought had dealings with Prof Roberts from Uni of Newcastle, and after waiting 6 weeks for my appointment began using natural progesterone. Nat prog wasn't as powerful as HRT at cutting down hot flushes but I was able to get off HRT and off cluster headaches. Bliss, except that my hot flushes had always been preceded by a strong wave of misery lasting a couple of minutes.
In 2000 I developed patchy alopecia and started taking cortisone and imuran. 2 or 3 months later I was having cluster headaches all the time, i.e. an episode lasting inefinitely. After a yr of medication I had to stop taking it because of the headaches. My hair is falling out again, I'm wearing my wig again, but I became free of headaches again until I ate wheat and drank Scotch. I had so little but I'm sick every day and need to do another fast. I'm slowly losing weight as the months go by and don't know why.
8th bit of luck: the wonderful Scots dr is back. She lives over the bay from me. I need to find where she is working.
That's my story. I'd so love to hear from anyone who relates to anything I've written. I'm one email away from never being alone with clusters again ! Bliss !
It is going to take me some time to explore all of your magnificent website. Already I've seen fascinating references. Shadow: I think I spend a lot of time in shadow. Water: I've started already! God bless you all and thank you.
Sincerely
Peta Nicholls
p.s. I'm 54 y.o., have one child, a married daughter, 30 y.o. who got migraines (but not C.H.) from the pill.
Another email address is peta99@froggy.com.au but my ISP, Froggy Holdings, croaked and is being taken over by another company. I like yahoo because yahoo has up-to-date virus checkers.
Hi I'm 32yrs old and was just diagnosed with silent migrains which causes partial blurred vision but no headache,and after a cat scan was told that the headaches that i do get are migrains.where do I go from here?
I have suffered from CH'S for about 9 years and have tried everything under the sun to control them. They went away for 5 yrs. and have suddenly came back to haunt me. I try to explain to friends how they feel but as we all know that is not possible unless you have ever had one. the only thing I have found to help is to hit the doors to the er. and get a shot to get knocked out. I hope some day that all of us will never have to have another one ever again!
GOD BLESS US ALL AND HANG IN THERE!
Kent
i just found your site and i can't stop crying....i don't know if it's because for the first time in 22 years of episodic clusters i don't feel all alone or reading your pages makes me want to tell everyone that i do understand. all i have ever been told from others is "yeah i get bad headaches too, take a nap, they'll go away" or that i have a low tolerance for pain!!!! dear god, reading about others means so much to me, that i can't stop my crying! thank you
i'm sitting here at the computer.the clock says 2.25am,and my headache is starting to ease up.what a mongrel. i'm 39yrs old and have suffered fron these things for at least 20 yrs that i can think of. this year they are early, or are they late? Normal duration of about 10-12 weeks.had a look at the kip scale before, i'd stopped crying from the pain and had to laugh in understanding when i read 10.
Hello, I'm 20yrs old and female. Suffering with full blown clusters (I hope there is no point beyond this) and trying to make it through college, which is becoming increasingly difficult when I'm doped up all of the time. None of the meds work, they just ease the pain off a bit. Dr. won't take me seriously for more powerful meds b/c apparently I am going to sell it on the street or something. Listen, you couldn't get my meds from me with a gun in my face. Sadly, sometimes the gun would seem preferable. So nice to find that there are people my age with this problem, I was misinformed that "they happen to older, athletic males" Ha.
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