The response to this website has been so fantastic, I've had to seperate some of the
messages. There were so many wonderful posts from suffers around the world, that it was
taking entirely too long for the page to load.
Below are the guestbook entries from Janurary, 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 and post your message or read messages from other months
just adding my email...not sure last entry had it
michael <meezee@aol>
ny USA
Friday, July 31, 1998 at 19:51:40 (EDT)
Well came out of my cluster a month ago...tapering the meds..1st sansert ..then the
verapimil...they've been coming early spring last few years...previously years just before
Christmas. 46 yr old male,,,started early 20s..probably migranes jusyt on Sundays before
that...tried all kinds of doctor's thru the years...8 years ago tried one of the best
headache clinics in the country..guess what...left there with the same meds my local yokel
neurologist had ordered a few years back...so I've learned thru the years...keep away from
the pain killers..tylenol,fiorinal, stadol etc..and stick with the preventives...but you
have to suffer for a while till they kick in...great site this is knowing its not in our
head,or caused by stress or all the other things non cluster headache people say...don't
you hate it when someone says i never get a headache....
michael <meezee>
ny USA
Friday, July 31, 1998 at 19:47:02 (EDT)
Doctors tend to think that nothing is wrong with me!! I have visited 3 doctors. All
give a different diagnosis.
Kay R. Keef <kk12@vol.com>
Kimball, Tn USA
Friday, July 31, 1998 at 14:55:40 (EDT)
C/H since 1980. Diagnosed in 1986. Cycles are 8-10 weeks with 2 year breaks. Oxygen
and injected imitrex work best to abort. Currently on verpamil (2 wks) and it seems to be
keeping things under control. Never let them go full-bore anymore. Best luck to all.
Rick <wright3@trib.infi.net>
Ruffs Dale, PA USA
Friday, July 31, 1998 at 10:01:12 (EDT)
Rick has been suffering CH episodes since he started a new job working under
florescent lights and sitting in front of a green screen computer terminal. We were
wondering if anyone else has noticed that these factors trigger CHs.
Rick Wylie <dwylie@email.msn.com>
Rohnert Park, CA USA
Thursday, July 30, 1998 at 23:35:42 (EDT)
Great Web Site...I have suffered with Clusters for 15 years running now. They come
every year generally in the fall. Absolutely unbelievable pain. I do have a good
Neurologist to perscribe the latest meds. I am looking forward to revisting this web site
in the future. Brad
Brad Perrault <bperrault@sacbee.com>
Sacramento, CA USA
Thursday, July 30, 1998 at 15:20:48 (EDT)
Finding this site is great. It has helped me realise that I am not alone. It seems
that other people simply cannot understand the pain and depression I go through when I
experience a bout of cluster headaches. It is reassuring to know that other people can
understand what I am going through. I am fortunate enough not to suffer from clusters too
often but would like to say what brings on my attacks: either acute anxiety and worry or
uncovered "strip" lighting. I have experienced clusters when I have been
extremely worried and anxious. Also I have experienced clusters when I have been doing
close-up work under "strip" lighting with an absence of natural light. Maybe it
has something to do with the flickering of the light. I don't know. All I do know is that
if I avoid the trigger factors then I can avoid the clusters (I hope)!! Once again, your
site is extremely useful and sheds light on what for me was a frightening and alienating
situation.
Simon
London, UK, UK
Thursday, July 30, 1998 at 12:24:38 (EDT)
Finding this site is great. It has helped me realise that I am not alone. It seems
that other people simply cannot understand the pain and depression I go through when I
experience a bout of cluster headaches. It is reassuring to know that other people can
understand what I am going through. I am fortunate enough not to suffer from clusters too
often but would like to say what brings on my attacks: either acute anxiety and worry or
uncovered "strip" lighting. I have experienced clusters when I have been
extremely worried and anxious. Also I have experienced clusters when I have been doing
close-up work under "strip" lighting with an absence of natural light. Maybe it
has something to do with the flickering of the light. I don't know. All I do know is that
if I avoid the trigger factors then I can avoid the clusters (I hope)!! Once again, your
site is extremely useful and sheds light on what for me was a frightening and alienating
situation.
Simon
London, UK, UK
Thursday, July 30, 1998 at 12:22:53 (EDT)
Nice to know I'm not alone.
Mike Cush <none>
Philadelphia, PA USA
Thursday, July 30, 1998 at 10:51:11 (EDT)
I am a 22 year old female whom has suffered for 15 years. This site has helped me
tremendously. Thank-You!
Melissa Davison <mdjpsamm@aol.com>
Lancaster, Ca. USA
Thursday, July 30, 1998 at 02:25:27 (EDT)
My husband has been getting headaches for a couple of months now.we've been to eye
doctors and now a neurologist.To me it sounds like cluster headaches he has many during a
day..mild to severe.His eyes are affected when he has the attacks.The doctor has
prescribed sansert.Avery expensive and hard to find drug.He'll be starting it tomorrow
since we had to order it.If anyone has any information on this drug please e-mail me.The
doctor said it may be a chemical imbalance???All i know is we are looking for answers and
i want my husband well again...any suggestions,ideas,or comments please e-mail me.
Shelli <tigerkat27@aol.com>
CA USA
Thursday, July 30, 1998 at 00:33:25 (EDT)
my prayers are with all of you who suffer from the pure pain of CH. this site is
truly appreciated-thank you. i've been chronic for 3 years and only get relief from
periodic LSD trips. if you try this, make sure of it's purity! GOOD LUCK. a valium may
help ease the edge. when i was sub-chronic sometimes it would break the cycle. you build
tolerance immediately so no more than once a week. it's also much cheaper than other
drugs(and safer too). been using this treatment for 14 years and no ill effects. HAPPY
TRAILS!!
ROB
ENCINO, CA USA
Thursday, July 30, 1998 at 00:05:34 (EDT)
What a great site....it doesn't help the pain...but I don't feel so alone. Cluster
pain can test the limit of your endurance and willpower. I don't think I truly understood
fear till I had these.
Jimbo
OH USA
Wednesday, July 29, 1998 at 21:02:23 (EDT)
My Husband has been a C/H suffer for 12 years and is in the midst of a bout. I
wanted to offer some hope. We were told the h/a would get progressively worse the older he
got. They were right, initially, in 1993 his h/a had increased to 6-8 hours per bout. They
were intolerable, I often took him to the E/R in the middle of the night for a shot of
demeral. That is when he was finally diagnosed with C/H. His internist thought it was
allergies and gave him nose spray, he almost o/d on it. Although he still suffers from C/H
they have returned to lasting approximatley an hour. Hopefully they will eventualy
disappear.
Michelle Shotwell <me123@earthlink.net>
St. Louis, MO USA
Tuesday, July 28, 1998 at 22:30:55 (EDT)
I'm glad I found this site. I've gotten these things for more than thirty years. For
five years, I didn't know what they were, and concluded that I was probably going to die.
That's a nasty load for a thirteen year old kid to carry. This site goes a long way toward
banishing that sort of ignorance and fear. Thanks, and my best to all of you.
George O. Jacox <kestrel@rmci.net>
Boise, ID USA
Tuesday, July 28, 1998 at 01:48:04 (EDT)
Just finished reading "A day in the life...." from the Home Page. All I
can wonder is does a telephone handset work any better than the blunt objects from my
mid-night torment. Wonderful site!! Interesting, informative and something new to do when
I awake this evening..
Henry <VeryTall_98@hotmail.com>
Los Angeles, CA USA
Monday, July 27, 1998 at 20:30:36 (EDT)
I have had cluster migraines 26yrs. I get them every yr, around the same time. I
have them for at least 4 months straight. I have taken everything there is. But they just
got to run there corse.I am on Indomethacin.This is new for me. I hope i out grow this.
I,m 39 now
Kim Viles <Kviles@toltbbs.com>
Temperance, Mi USA
Monday, July 27, 1998 at 20:00:53 (EDT)
Sorry may bad English !! Clusterheadache had destry 15 year off may 39..... The last
4 year i hade 2-5 attacks in periods off 50 to 90 days every day. then 7 to 40 day free !
then i meeting the Devil egen
Jörgen Hansson <jhn@karlshamns.se>
374 51 Asarum, Sweden
Monday, July 27, 1998 at 19:18:48 (EDT)
I am a 39 year old male who has been suffering for the last 4 yrs. There are nights
that i wanted to take my life because the pain was o intense. I couldn't really do that
but thats how bad it gets . I have imitrex injections that i take to relive the pain but
hold off and suffer because I don't want to overload my body. When I worked midnights the
headaches came during the day about 3 hrs into sleep . They last a good hour and are so
intense people don't realize the pain so it's frustrating. Usually, they last for two
weeks and dissapear for four weeks. I hate going to bed knowing that I will be woken up
later with these.My nose starts to drop when i get them and thought it was sinus related.
Not the case. I've had MRI'S CAT's and EEG'S and my brain seems ok to the dr.s But then
again I wish that they would have a night with them. I hope someone can help me I'm
Desperate and tired of hearing myself complain or explaine to people how bad they are.
I'll be waiting for and suggestions Thanks for having this board up.
Charlie Lamothe <clamothe@sprynet.com>
Groton, CT USA
Sunday, July 26, 1998 at 23:02:38 (EDT)
Well this didnt work for me but if i can help one of you it's worth it.. cause i've
been living with it for a little over 2yrs now but just got diognosed with ch, so i'm just
now trying to learn about it i've tried magnets yes magnets they sell neclaces and other
types for therapy use look into it i hope i wil help someone, for me it only seemed to
take the edge off but the duration of the ch was still there, i'm trying to find
treatments that dont involve drugs, please help even if you have had no sucess i'm willing
to try, still in lots of pain and the drugs are making me sick.. please help.. e-mail me
at chevpower95@hotmail.com thanks glenn
glenn <chevpower95@hotmail.com>
Rio Rancho, NM USA
Sunday, July 26, 1998 at 05:32:26 (EDT)
I'm not interested in taking drugs if i can help it, so if anyone out there has
tried some other options besides drugs please let me know, even if you had no sucess i
would like to here your story.. please help.. thanks
glenn <chevpower95@hotmail.com>
Rio Rancho, NM USA
Sunday, July 26, 1998 at 04:53:33 (EDT)
Hello. My husband Don has had cluster headaches for about 10 years (he's 47, a
reformed smoker, high stressed -- basically his picture is in the medical book when it
describes the type of person who gets cluster headaches). The headaches seem to come every
18 months and last for about 2 months. At the height, everything triggers them including
walking, sleeping, flying in airplanes. I'm sure I'm not telling you all anything you
don't know. We are currently very worried about him because his medication, fiornal or
fiorcet, has been much less effective this time around. He has just started a new cluster
after about 1-1/2 years being cluster free. We thought life style changes would help, like
eating better and getting more exercise. But it hasn't seemed to help. Does anyone know of
a good headache clinic in San Francisco they could recommend? We would like to try
different medications and/or other treatments to see if it works for him.
Alison & Don <alippa@ibm.net>
San Francisco, USA
Saturday, July 25, 1998 at 12:32:22 (EDT)
I am not alone..........
Tony <Twotyred@us.net>
Columbia, MD USA
Saturday, July 25, 1998 at 09:09:19 (EDT)
I have had clusters scence the age of 13. I am now 39.I would get them every year
for 3 months at a time. Now I get them every 2 yrs, but they last longer. I have tried
everything. I guess you just deal with it. Kim
Kim viles <kviles@tbbs.com>
Temperance, Mi USA
Friday, July 24, 1998 at 06:07:36 (EDT)
I'm glad to find this site. I was surfing to find out more about the occipital
block-I'm scheduled to have one next week. After reading more about it, I'm not so sure.
Of course, the next time the pain hits, I would agree to anything to make it stop. I've
had CH for 18 years, and haven't found any treatment that works well. Some relief with
pulsed steroids. No help from CA channel blockers,indomethacin, depakote, and several
other drugs. Cold packs and massage help end an attack. If it's one of the full-blown,
can't stand the pain another minute type of attack, Percodan is all I have found to end
them. Good luck to all of you. Dan
Dan Speir <iman@centuryinter.net>
Hardy, AR USA
Friday, July 24, 1998 at 02:55:39 (EDT)
Just great to know I'm not alone. Looking for that miricle cure.
Gord Johnson,, stinger
winipeg, MB CANADA
Thursday, July 23, 1998 at 23:21:03 (EDT)
hello to all sufferers! although i am not a sufferer, my husband of 5 years is, he
has been on every medication there is, i mean every one, thank God for insurance! I was
just curious, if there is anyone out there in the state of Kentucky who suffres from these
things, I would like to know. I feel completely helpless when my husband has his attacks,
I think if he knew he wasn't the only one around who had them it may help to
"vent" My heart goes out to all of you who suffer from clusters, i don't
personally know the pain, but the emotional, stress, and watching someone you love go
through it is close enough. I wish you all the best and hope you becom cluster free!
t leachman <fishon@iglou.com>
bardstown, ky USA
Thursday, July 23, 1998 at 13:48:56 (EDT)
You are not alone and these headaches are real!
Don D. Ruiz <dondruiz@aol.com>
Phoenix, AZ USA
Thursday, July 23, 1998 at 08:57:03 (EDT)
Hi, my name is Marcel. I'm 46 years old and I have CH for about 35 years now. In the
beginnig the headaches came at night and lasted for two to three months per period. The
headaches lasted exactly 1 hour each time. A couple of years ago I went to see an
accupuncturist. I can say that that helkped me a lot. The periods between the headaches
became longer and longer and the intensity of the headaches becames less. I now am in a
period, but I haven't had CH since november 1996. And that is the longest time between
periodes I have ever had. I don't take any medicine, if anyone in Holland knows of a good
medicine that helps I will be eternal gratefull. This is the first time that I have
visited this sit but it won't be the last time.
Marcel van Dun <vandun@cybercomm.nl>
Utrecht, The Netherlands
Thursday, July 23, 1998 at 02:59:28 (EDT)
i first added my entry on july 8. this is a follow up to that. ijust wanted to share
some info i received from a fellow sufferer of these excruciating headaches.the suggestion
was made that if the blood vessels are swelling , the cold might help reduce the swelling
and rid youself of the headache. well in my case. ihave been using an ice pack just when
the headache begins, and so far it almost seems like an abortive measure . in a matter of
minutes the headache is gone.i am going to my doctor tomorrow and sharing this info. i
would like to know if anyone else has tried this method and what were the results. this is
a great site to share infomation that was not possible before. so long for now.
RICH <RJGILLIGAN@AOL.COM>
USA
Wednesday, July 22, 1998 at 21:31:35 (EDT)
Thank God for this website. I have suffered with CH for 15 years. I am now 35 years
old. My 44 year old brother gets them, and my grandfather got them well into his 70s. My
headaches come every two years in July. I get 1 to 6 per day for about 6 to 8 weeks. I
make it a point to visit a physician as soon as the first CH occurs. Unfortunately, since
I have moved around a lot, I always have to start over with a new doctor. My most recent
HMO doctor at Panther Creek Medical Center in The Woodlands, TX is a first rate asshole
and a quack. Even after having all of my medical records transferred and explaining my
condition to him in detail, he treats me like a drug addict. At first he wouldn't
prescribe Imitrex because it is expensive. He now rations it out 9 pills at a time (50
mg)- lasts about 2.5 days if I'm lucky. I also use oxygen, but since I travel in my job, I
can't use it all of the time. I have found that Stadol NS works to stop the pain, but
again I have to use it sparingly because the asshole doctor won't prescribe it in large
enough quantities. Does anyone know of a good doctor in the Houston area? Please let me
know. Thanks!
Phil S <jpsmith@terratherm.com>
Houston, TX USA
Wednesday, July 22, 1998 at 09:42:17 (EDT)
I'm 33 years old, and have suffered for 11 years. It's nice that I don't have to
explain the pain CH's cause. (migrainer's have no idea!). I truly believe CH's have
something to do with day/night, sleep/wake cycles. Changes in season, how much light I
get, when I wake up, all seem to be somehow related. Good luck to all.
Steve Terry <aleeda1@aol.com>
Neport Beach, CA USA
Tuesday, July 21, 1998 at 20:54:56 (EDT)
When i was adding my message i forgot to mention my son is only 11 turn eleven today
21jul... and he has been suufering for the almost his entire life along with asthma
sometime he has them months apart sometimes two and three weeks behind each other and they
last for one and two weeks at a time... help....
brown denise <brownda@hqi.usmc.mil>
ft washington, md USA
Tuesday, July 21, 1998 at 15:36:13 (EDT)
My son Javon suffers with migrain headaches and when he suffers is not good. Now he
has an headach on one side of his head... they have him on endural 20mg but i think they
either change the medication or increase the medication.. please help let me know of
something that may could help him because he is suffering so much with the headachs..
concern very much.. I know this could be food indicate or something...
denise a. brown <brownda@hqi.usmc.mil>
ft. washington, md USA
Tuesday, July 21, 1998 at 15:19:34 (EDT)
Developed CHs beginning in 1993, and am in the middle of my third cycle.
David Kopp <dkopp@tiac.net>
Hudson, NH USA
Tuesday, July 21, 1998 at 12:18:41 (EDT)
Hi, I didn`t realise there were so many CH sufferers around, I sympathise with you
all. I had my first bout in `91, 2 more in `92 then nothing until 3 weeks ago when it came
back again. My doc identified it immediately from the symptoms I described and prescribed
Ergotamine. It worked well on the earlier attacks but unfortunately did nothing this time
around. I have had some relief using a TeNS machine but it only eased some of the symptoms
not all (and you are limited as to where you can place the electrodes around the head).
When I shake off this attack and can concentrate better I`ll have a look through the site
for new ideas to try. Whether or not I find the answer, the idea of getting everyone
together to pool ideas/thoughts has to be better than going it alone. I wish everyone luck
in their search for a solution.
Alan Collier <alan.collier@which.net>
Plymouth, Devon UK
Monday, July 20, 1998 at 20:24:43 (EDT)
~Hi Everyone~ I have visited this site many times in the past month, but just
haven't been able to get my neurons together long enough to write. I have had CH/Migraine
combo since 1985. Luckily at that time I had a family Dr. who also suffered with these H/A
and was quick to refer me to a Neurologist and get prescribe Oxygen. Have tried many meds
over the years, only to have either an allergic reax or no reax at all. I have moved to
FL. and have not been so lucky finding quality healthcare--and I'm a Nursing Manager
contracted to 6 hospitals in the Tampa/Clearwater area! I havenot been able to work since
May 27. This is not good-I'm a single parent! Oxygen was ordered last week after trying
depokote (no effect) and Stadol nasal spray (developed hives). My D.O. has FINALLY
referred me to a Neuro. Meantime, I have isolated myself from friends and family because I
can't talk right and get confused as to where I am when I drive (get nauseous and
photophobic). It hurts to put my head down or even to walk around the house. In all these
years this is the worse its ever been. Gotta go--pain is starting up in the right eye and
having trouble seeing. I do want to thank-you for this website DJ, and Laurence for your
sense of humor. I wish you all a day without pain~
Bethe Caouette <Shdwdancer@webtv.net>
Palm Harbor, FL USA
Monday, July 20, 1998 at 15:28:33 (EDT)
Hi, I'm a 40 yrs old male and I just found this site last week, while wondering
about on the web looking for news on this CH. I had a very short CH bout (lasted about 1
week) back in 1987. Doctors did not had a clue as to what it was. Then it came back end of
Summer 1991, lasted about 1 month and a half. I was dyagnosed CH. Imitrex was not around
then........After 7 years of silence it came back heavily mid-May this year. Neurologist
gave me Verapamil (up to 360 g. a day) and Imigran (wich I belive is the Italian
brand-name for Imitrex) on 6 mg. injections and 100 mg. pills. After 1 month of verapamil
I had 10 free days and then it just came back as before. Sometime 1 attack, sometime 3-4
attacks a day. They seem to be less painful then before starting Verapamil. Rightnow i
just shot myself and injection of 6 mg. as soon as I feel it coming. Sometimes I am up to
4 injections a day and 1-2 pills. I found than taking a pill after and injection seems to
postpone for more hours the next visit.....Has anybody felt the same? I do not seem to
have any side-effect if not that I feel sleepy and little dizzy. It was great great help
to find all of you people out there. Thanks for sharing all your informations and daily
experiences with everybody else. Love to all. Cesare
Cesare Bassani <tabba@tin.it>
Milano, ITALY
Monday, July 20, 1998 at 05:51:33 (EDT)
Cluster headache sufferer and physician, always interested in learning about new and
better ways to treat cluster headaches.
Matt Beckwith, M.D. <mattbeckwith@hotmail.com>
Hagerstown, Md USA
Saturday, July 18, 1998 at 22:29:12 (EDT)
I am greatful I can read about other people going thru the same Horrible pains of
Cluster headeaches like me. It is the worst nightmare of my Life.
John Achim <jnaarb7@aol.com>
Lake Worth, Fl USA
Saturday, July 18, 1998 at 22:28:09 (EDT)
13 year chronic cluster sufferer. 3 daily. 32 different medications tried. $900
oxygen bill last year. I wish you all the best in your search for a pain free life.
Landon Hoy <tlampman@hotmail.com>
Burlington, On Ca
Saturday, July 18, 1998 at 19:34:47 (EDT)
thank you for this site. I am grateful for someplace with understanding.
bryan buck <ozzieandharriet@ameritech.net>
washington court house, oh USA
Saturday, July 18, 1998 at 08:24:36 (EDT)
Have suffered for 9 yrs. Oxygen, coffee, cold packs, neck massage, and Caffergot
have helped. Any other suggestions short of decapitation would be appreciated.
Linda <calientev8@snowcrest.net>
Red Bluff, Ca. Ca USA
Saturday, July 18, 1998 at 02:56:19 (EDT)
Been suffering for 18 years. Very upsetting to family life. Sometimes just want to
bash my head in pain is so intense. clusters usually once or twice a year lasting from a
few weeks to 2 or 3 months. Just beginning to get over one now, June 1998.
Glenn Williams <nwilliams@tripled.com>
Shelby, NC USA
Friday, July 17, 1998 at 17:03:23 (EDT)
My HMO doctor is a fraud and a spineless idiot !
Terry York <terry@bexel.com>
Burbank, Ca. USA
Friday, July 17, 1998 at 02:37:29 (EDT)
Thanks for all the info--plan to take to my family Doctor who is very sympathetic,
but doesn't seem to know alot about these headaches--I asked HIM about Wigraine, for
example, after reading about its use in Cluster Headache treatments. I am on "day
fourteen" of the current cluster cycle and am ready to shoot myself. The thing that
keeps me going is knowing, that after the headache starts, I have "only" about
45-60 minutes to suffer--a small consolation, but I am grateful for the short duration of
the pain. I am taking the infomation I printed to the doctor's office--Thank you!
M. A. Beckett <jrmillie@msn.com>
Cols., OH USA
Friday, July 17, 1998 at 01:08:23 (EDT)
che tu conosca qualcuno che conosca l'italiano,se si contattami forse posso darti
una mano per il dolore di testa la mia donna e altre decine di conoscenti hanno
comletamente risolto il problema.saluti cordiali marco e claudia
marco silvestri <silvem@ats.it>
lucca, italy
Thursday, July 16, 1998 at 23:34:55 (EDT)
The guiding homeopathic principle of "like cures like" is something that
has worked wonders in the relief of my episodic clusters. Of the 27 meds I've tried, only
one worked: morphine by injection. I felt great for an hour and then the headache returned
with a vengeance. I tried wrapping my head in a cold-water-soaked towel, since the
affected side felt very hot. No dice. Then, with the 'like cures like" idea in mind,
I turbanned my bean with a towel soaked in hot water as intense as I could tolerate.
Within four minutes the enemy was in full retreat. It stands to reason that if the cluster
is vasoconstrictive, the application of heat is likely to dilate the blood vessels back to
normal. Conversely, if the headache is vasodilative, the application of cold might shrink
the vessels back to normal. This tidbit of applied homeopathy has been a true
cluster-buster for me. I offer it in the hope that it might lighten someone else's load.
Tracy Gordon <tgor@webtv.net>
Glendale, ca USA
Thursday, July 16, 1998 at 17:54:02 (EDT)
Thank you for this wonderful site. My sympathy goes out to everyone who suffers ch.
I spent several days a month in the hospital, in such terrible pain and lost vision in one
eye from these things. I was told that I had both types of chs. This went on for 20 years.
After divorce I only have had 2 or 3 this past year. Sorry to say this, but I would have
left my husband 19 years ago if I knew it had something to do with these chs. (not really)
Take care, Pat
Patricia Joyce <pjb@unforgettable.com>
Rochester, NY USA
Thursday, July 16, 1998 at 13:07:14 (EDT)
Well they're back...after 4 1/2 pain free years and if they're anything like the
last bout I'm in for 9 months of HELL!!!
Don Nafe <dnafe@magma.ca>
Ottawa, ON Canada
Thursday, July 16, 1998 at 11:06:10 (EDT)
I have been a sufferer of clusters ever since I can remember, a doctor once told me
I would have these for the rest of my life until I went through menapause, but they would
get worse before they got better. I have started my 6 week session with these clusters and
am very greatful they stayed away for 2-1/2 years. Alot of ice, O2, and fiornal w/codiene
to the rescue. I have searched for more remedies, but this seems to be tolerable. We live
with the pain by maintaining it, no panic, it does not work. Relax, concentrate on making
this monster go away. I will get through this one, as I have in the past. As I grow older,
having a positive additude helps. I am getting long winded here, sorry. To all of you that
suffer, remember it doesn't last forever.
Vonna <VonnaMas@aol.com>
Deerfield, IL USA
Thursday, July 16, 1998 at 10:45:13 (EDT)
Hi, thank's for this site, i have the CH too, 3 month for year, now is the period of
the 'beast' !! Un grande ciao dall'Italia!! ** a pain a day leave the life away **
Gianluca <glf287@sinet.it>
Turin, Italy
Thursday, July 16, 1998 at 10:00:22 (EDT)
I thought they were finally gone for good!
Ron <hooke@pacbell.net>
San Francisco, Ca USA
Thursday, July 16, 1998 at 02:25:48 (EDT)
These attacks have just started for me. I had never heard of CH, and I wish I never
did. They hurt!
Paul Wolfe <Pwolfe@Pagemart.com>
Dallas, Tx USA
Wednesday, July 15, 1998 at 22:48:53 (EDT)
I have had CH's for about 8 years. Mine seem to come every 2 or 3 years and last 2
or 3 months. This last time started in May and right now have not had one in 2 weeks.
Althought the pain I have is like the rest of your readers describe I do not seem to get 2
or 3 the same day. Mine just last all day, sometimes. Exercise helps keep them from being
so severe or not at all.
Mike Downerd <leroy1@raex.com>
Hartville, OH USA
Wednesday, July 15, 1998 at 21:53:47 (EDT)
Hello all, I just happened upon your site by accident, but I thought I would share
some good news with all of you fellow sufferers. Actually I'm no longer a sufferer of CH.
I was for 20 years, but I've been free now for about 10 years. I do still have a sinus or
food allergy related headache occasionally, but no more totally debilitating Cluster
Headaches. They treated me for migraines, which as you know is not the same. It took some
experimenting to find the solution. When you feel the CH beginning, DON'T ignore it,
immediately take 2 30mg Inderall tablets and lie perfectly still for 10-15 minutes. THIS
IS KEY!! If it subsides, great! You won. If it continues, take a Limbitrol tablet (of the
size containing 10mg chlordiazepoxide & 25mg amitriptyline) and remain motionless for
awhile. Concentrate on NOT moving and force yourself to freeze in position! It WILL
subside shortly (you'll probably go to sleep for an hour or so). After using this
procedure as needed for about 2 years, I am FREE! FREE! FREE! (sorry 'bout that) Of
course, you'll have to get a doctor whose willing to work with you AND will write a Rx to
get the drugs, but it's worth the trouble, believe me. Scott
Scott Carroll <sdcarroll@juno.com>
Mission, TX USA
Wednesday, July 15, 1998 at 15:36:13 (EDT)
This is great site, I have got all the information that I need for my cluster
headache. I'm a 26 years old male, and I have just found out that I have a cluster
headache. It is night mare, the pain, the sleepless night and my god the left eye. Hope to
get all the information that I need for my self and for my mother who has been suffering
with migrane for the last 45 years. Does migrane a heridatory thing - ? Thank you...
Aklilu Hagos <akassa@on2logic.com>
Toronto, ON Canada
Wednesday, July 15, 1998 at 13:46:03 (EDT)
Thanks for the information. After reading all about cluster headaches I can see
where my neurologist is off his mark on my treatment.We have been treating me as if I had
migraines and now I will call him to do a reasessment on me.
joseph galant <j142e@aol.com>
kirkland, wa. USA
Wednesday, July 15, 1998 at 02:41:20 (EDT)
I found this site to be very informative and I hope that some of the suggestions
help. I was CH free for two years until now. I am not dealing with this very well. After
reading this site there is some consolation knowing that I am not going through this
alone.
Bill Lindsay <lindsayb@telusplanet.net>
Calgary, Ab Canada
Wednesday, July 15, 1998 at 01:23:49 (EDT)
Looking for other CH Sufferers in the state of Wisconsin. Please email if you would
like to share and have email buddy!!
Beth <lassie@execpc.com>
WI USA
Tuesday, July 14, 1998 at 21:05:14 (EDT)
Verapamil is a GOD send. After maintaining a dosage of 480 mg. per day, the clusters
have ceased. I will finish my Prednisone taper in two weeks and SLOWLY taper the Verapamil
to 120mg a day. If still headache free, I will maintain 120mg. per day indefinitely. I
have heard this is safe and may prevent future episodes. Has anyone had luck with Lithium
in Episodic Clusters? If so, dosage and length of duration. Most importantly, HAS ANYONE
FOUND ANYTHING THAT HAS PERMANENTLY STOPPED EPISODIC CLUSTERS????
Richard L. Green <NCRich@aol.com>
Charlotte, NC USA
Tuesday, July 14, 1998 at 19:36:10 (EDT)
After years of being certain that I was doing all I could to prevent these, I have
found that I was wrong. It is a great comfort to know I am not alone during these clusters
(although, I would gladly leave the group). Great site, and thank you ever so much for
putting everyone in touch. There are so many rememdies I have never tried, I don't know
which to start with.
Kelly Stuehling <JITT260@aol.com>
Las Vegas, NV USA
Tuesday, July 14, 1998 at 11:10:53 (EDT)
I have had CH for the last ten years each Autumn without fail. It has had a major
effect on my life although I now accept that I will be ill for many years but won't let it
defeat me.
Debbie <deborah_noyce@watsonwyatt.co.uk>
Birmingham, United Kingdom
Tuesday, July 14, 1998 at 06:33:53 (EDT)
I have had these monsters for 20 years -- since college. Seasonal episodes-- Spring
and Fall, usually 4-6 weeks -- with one three-year period of remission. I am in the midst
of a particulary bad bout right now -- and the Imitrex seems to have stopped working. Has
any one else had experience of building up a tolerence to Imitrex? It was truly my wonder
drug. I am deepely depressed that it no longer works. Thanks for this site -- it just a
relief to know that I'm not losing my mind -- these "headaches" really are as
bad as I think they are.
Barb Feige <feige@jhf.org>
Pittsburgh, PA USA
Monday, July 13, 1998 at 15:38:50 (EDT)
I have had cluster headaches for 26 years. I seem to be one of the few women
sufferers. They seem to be getting worse as I'm getting older. Every 2-4 yrs., but the
bouts have increased in length. MD's are not real sympathetic & I don't talk to folks
about them much (seems others feel the same way). I'm fortunate because O2 aborts my
attacks, but I am basically disabled for weeks with the shadow effect. I feel depressed
and lonely! Thank you for being here!
Jude Hanzo <hanzoj@aol.com>
Portland, OR USA
Monday, July 13, 1998 at 15:02:02 (EDT)
Thanks for the info. I have had the headaches most of my life and have been told
they were everything, with no sincere efforts to relieve them. The doctors seem to attach
to a judgement and won't let go. One simple relief I have found is to apply an ice pack to
the shoulder, neck, forehead, eye area. I experience an increase in body heat and once I
get my body temperature to normal the headache will disappear. It usually takes from 20 to
30 minitues. Although not a cure, it does help in a pinch. I appreciate the site for
bringing forth options that the doctors don't inform you of. Now I can ask them about the
different options. I guess now I will have to find a doctor that the questions will not
threaten their ego. Sincere attentiveness is not easy to find when the medications are not
socially acceptable. I would appreciate any e-mail info. Thanks again. Steve
Steve Goins <Stoneart@aol.com>
Oklahoma City, OK USA
Monday, July 13, 1998 at 12:55:06 (EDT)
HELP IS OUT THERE! TRY A CHRONIC PAIN MANAGEMENT SPECIALIST! Here's how I found
relief: My seasonal clusters went chronic a couple of years ago -- after several years of
being seasonal only... I'm female -- don't smoke - don't drink -- never have. After
several years of trying just about every preventive and abortive -- and combos of same --
I have finally found a managable/livable solution. I use Verapamil to cut the number of
HAs and their length. I am on a low-dose of methadone to block the pain. I use Stadol for
breakthroughs. I have regained my life -- thanks to a chronic pain management specialist.
I urge anyone who suffers from clusters to seek out a chronic pain management specialist .
Be sure to get one whose background is anesthesiology -- not psychology/psychiatry -- as
in "shrink!" (They're the ones who tell you to "postitive think"
yourself thru the pain. Wish they could experience just ONE cluster HA.) There is an
excellent article regarding the use of methadone in daily HA sufferers by Lawrence
Robbins, M.D. which I believe was published in Headache - summer of '96 or '97. Yes,
methadone is mentally addictive. But not nearly so as the government/DEA would have most
lay people -- and physicians -- believe. Of the thousands of chronic pain patients in the
U.S. -- thanks in large part to the DEA --- and around the world -- most are significantly
undermedicated. Meaning -- drugs which could be used to block their pain are not offered.
Why does this continue? Anyone with access to the 'net can read article after article in
medical journals which state that undermedication is not ehically proper... Are chronic
pain management specialists the only doctors reading these journals??? If you do some more
digging, you'll find many articles which have found that strong, narcotic medications are
not nearly as addictive as once thought! And, that after their body's adjust to it,
patients on methadone, morphine, etc. can function -- drive a cr, etc. without
impairment... Please help yourself. Try the preventive and abortives. If all fails, don't
give up! Find a good, chronic pain management specialist.
Anon (I don't want the DEA after me...)
ME USA
Monday, July 13, 1998 at 12:20:26 (EDT)
I have suffered from clusters for over thirty years and I have just started another
cyle of them the last time was in 93. Thank God for Imitrex and oxygen. Before Imitrex,
oxygen was the only thing that worked and I have to use it as soon as I feel one starting
it won't stop them after one gets going. In 93 with my last bout imitrex had just come out
and I had been reading about it for years while they were developing it, so in 93 I told
my doctor to give some, along with all the other pain killers that did not work just made
you sick or pass out which I was greatful to be able to pass out. The first injection I
tried I told my wife I was going to wait till the cluster was full blown and give myself
the injection, so I did. In 3 1/2 to 4 minutes the cluster was gone, I jumped up off the
sofa and told my wife it was gone. She was in shock as she thought something else was
wrong. Well enough about me. Thanks for this web page. B.Brence
Bob Brence <pcbob@juno.com>
Minco, OK USA
Monday, July 13, 1998 at 08:46:42 (EDT)
Hopefuly this site will help me find out more about this problem
S G TAYLOR
uk
Monday, July 13, 1998 at 07:57:22 (EDT)
Wonderful site! Can't wait to read everything.
Michele W. <michelew@nfld.com>
Mount Pearl, NF Canada
Sunday, July 12, 1998 at 23:33:14 (EDT)
I have had these headaches since i was 15 i am now 31 and i often ask myself what i
did to deserve such pain but i guess i will never know i have had them twice a day for 2
weeks now and am ready to just give up, my doctor gives me stadol for the headaches and it
does work in a matter of min's but he will only give me one bottle a month and that is
hardly enough to last the whole month if anyone has any tips on how to ease the pain
please let me know, i am really tired of waking up in the middle of the night in severe
pain, we do not seem to get much attention from the wonderful world of medicine so i guess
its up to us alone to find our own way of dealing with this pain, my doctor says if the
pain only last 20 to 30 min's i should be able to deal with the pain i told him to slam
his head in a car door for 30 min's and see how well he can deal with the pain take care
all and if you have any tips please let me know..
R.C. <rcarle@crosslink.net>
LaPlata, md USA
Sunday, July 12, 1998 at 22:30:57 (EDT)
i have lived with cluster headaches since my early teens,i often thought death would
be better than a headache. for everyone out there with this type of headache my heart goes
out to you, we are a lonely breed, in alot of pain!!!!!!!!.
tony santangelo <italian2@webtv.net>
surfside beach, sc USA
Sunday, July 12, 1998 at 21:27:55 (EDT)
I've been suffering from Clusters for the past 18 years with bouts occuring every 3
years like clockwork to the month. I have been lucky that I have not had an episode for 6
years until last night. Since then, I have had 3. Sure wish I had my Oxygen tank!! I've
never trid Imatrex, but will see the MD tomorrow morning. I have never feared anything in
my life as the impending PAIN that will occur for the next 4 - 6 weeks.
Steve Sotnick <stevedosi@aol.com>
Miami, Fl USA
Sunday, July 12, 1998 at 13:29:52 (EDT)
Hello everyone just found this site this evening and it's nice to be able to
converse with people that understand the feelings and pain one goes through yet very sad
that we must suffer this demonic attack on our systems. I was told about an herb called
Feverfew 2 1/2 yrs. ago that after I started taking this gave me remission until just
recently. Istill believe this to help dramatically above and beyond anything I have ever
tried. I
Steve Funk <cani007@aol.com>
Grove, OH USA
Sunday, July 12, 1998 at 01:06:35 (EDT)
It is the most intense pain that I have ever felt.
Katja Cooper <marcity@dcache.net>
Marblehead, OH USA
Saturday, July 11, 1998 at 12:34:51 (EDT)
Allright , I discovered the site about 2 weeks ago . Since then , I learned a great
deal about my Clusterzz . By seeing the great number of people who suffer from the same
condition as I , has helped me overcome the "fear" most of us endure, mainly due
to isolation . Now that we are unified by this site , the next step is to gather all the
information and experiences towards a possible cure . I'm sure the cocktail of medications
that has been mentioned here will no longer be necessary any more . Even lab rats don't
take this much abuse . So ....GUESTBOOK ....I Hereby SIGN YOU !!! Yazz
Yazz <yazzman@total.net>
Montreal , Qc Canada
Saturday, July 11, 1998 at 06:24:42 (EDT)
It's nice to know we're not alone!
Robert Hansen <rs_hansen@msn.com>
Ogden, UT USA
Saturday, July 11, 1998 at 00:47:42 (EDT)
Thank GOD for this sight. I have spoken with few wonderful people who have shared
their experiences with me in the last week. My eposodic cycles run every other year for
4-6 weeks each. Prednisone and Oxygen worked before but not this time. Oxygen still takes
them away with 10 minutes or so with no side effects but, thanks to this sight, I found
out about Verapamil and have started taking it today. So far, so good. I am optomistic! I
hope everyone finds "their" relief soon!
Richard L. Green <NCRich>
Charlotte, NC USA
Friday, July 10, 1998 at 22:56:32 (EDT)
The opening comments of this page are terrific. "out of oxygen and where's the
imitrex". Just beautifull. I really in a way thought I was the only one who suffered
this kind of pain. I would also like to say a little bit about insurance company's and how
they rule the world. finally diagnosed, imitrex works, yet, can only receive 2 injections
per 30 days for the co-pay will pay. Can't afford fifty bucks per injection. I live by the
needle of imitrex. I will have to endure when i am out. I hope that day never comes....but
it will. I want to ad what a great site. let me know if there are any medical advances in
the research of cluster's. thank's again, Rick Schisler.
richard g. schisler <rico200001@aol.com>
fayetteville , ar USA
Friday, July 10, 1998 at 22:24:00 (EDT)
I just made it through my third attack today, and came to my cumputer to shut it off
for the day, when I decided to do a search for cluster headaches. From what I've read so
far, something good did happen today, as I thought I was the only one in the world that
got clusters, I'm 55 years old and have been getting them since I was thirteen. I have met
just one other person with clusters. Thanks for being here.
George R. Huddy <grhuddy@hotmail.com>
Columbus, OH USA
Friday, July 10, 1998 at 22:11:21 (EDT)
this is such a great site.....nice to know there are others out there..even though
we all know there are no meds out there that can "cure" us and different meds
work for different people, at least some meds help. Over the years I've tried them all
except the seizure meds..Tegretol..etc..Verapimil 480 mg total a day and sansert has been
working the best for me lately,,though it does take up to a month for them to kick
in..which is usual for preventives...i know the dangers of sansert and usually start
tapering off after a month or two..and just stay on the verapimil...i've found excidrin
migrane helping too...but shouldn't take that or any painkiller too often or you get the
rebound..so i've been clustering since march...last cluster a month ago and am tapering
the sansert.Hang in there..I know you're saying yeah we do but its tough
mike <meezee@aol.com>
ny USA
Friday, July 10, 1998 at 20:54:35 (EDT)
I get awful migraine headaches all the time and can not figure out what causes them.
I have tried everything from a headache journal to allergy testing. They started when I
turned twenty years old and now I can't seem to get rid of them.
Jaime Weiss <jlw512s@nic.smsu.edu>
Springfield, MO USA
Friday, July 10, 1998 at 18:47:32 (EDT)
First I wish to offer my gratitude to the founders of this site! I see I am in good
company! Sadly it is a great sadness that brings us together. But there is comfort in
having one and other. My prayers go out for each and everyone one of you! may your days
and nights be well!
Wolf <Wolf49@msn.com>
Zionsville, PA USA
Friday, July 10, 1998 at 10:16:17 (EDT)
I have suffered from primary chronic cluster headaches for ten years now.
"Chronic" means no remission periods. I am very pleased to have learned of this
site.
John Bown <jbown@primenet.com>
Tucson, AZ USA
Friday, July 10, 1998 at 08:20:28 (EDT)
DJ, Thanks for having this site. Very educational. I've learned so much today. Keep
up the good work. I'll keep the board posted on how different treatments work for me. -
LEE
Lee Emdur <leewolf99@yahoo.com>
State College, PA USA
Thursday, July 09, 1998 at 18:22:26 (EDT)
Found your site off the Cluster Headache HomePage and it's nice to finally have
access to information on my headaches. No one else understands when you say it's worse
than "abnormal childbirth or accidental amputation" (from
web2.airmail.net/skymaster/cluster/).
Nikki Ozawa <nikoz@juno.com>
Mission Viejo, CA USA
Thursday, July 09, 1998 at 14:47:14 (EDT)
i have been suffering agonizing attacks for 12 years! i get usually 1 to 4 6 week
long cycles per year of 1 to 4 headaches per day. they start slowly and build in intensity
and then drop off. i am in the midst of my "10"s curently. sleep is just a dream
right now. nothing works. i am thinking about buying some street heroin. that sounds
foolish, but i am desperate!!!!! Scott
scott gresser <dolmance@gte.net>
west lafayette, in USA
Thursday, July 09, 1998 at 04:53:55 (EDT)
i have been suffering agonizing attacks for 12 years! i get usually 1 to 4 6 week
long cycles of 1 to 4 headaches per day. they start slowly and build in intensity and then
drop off. i am in the midst of my "10"s curently. sleep is just a dream right
now. nothing works. i am thinking about buying some street heroin. that sounds foolish,
but i am desperate!!!!! Scott
scott gresser <dolmance@gte.net>
west lafayette, in USA
Thursday, July 09, 1998 at 04:52:36 (EDT)
To add to my first message....I am a smoker and find that althought smoking may
cause CH's, it helps during an attack (not near the Oxygen though) . I am in no way
advocating smoking to non-smokers. Also, without sounding like an alcoholic, is there any
medication you can take that will allow you to drink while in a cluster cycle? As long as
I'm "stepping on toes" does anyone know if marijuana would help? I'm willing to
try anything at this point although the Prednisone taper (30 days) and oxygen work best
for me. I just wish I could take something to prevent these debilitating clusters from
EVER coming back. I would appreciate any advice!
Richard Green <NCRich@aol.com>
Charlotte, NC USA
Thursday, July 09, 1998 at 03:50:57 (EDT)
Episodic Cluster sufferer. Cycle runs every 22-24 months. Use a 31 day Prednisone
taper, Oxygen and Toradol. Not found a preventative medicine as of yet that works!
Richard L. Green <NCRich@aol.com>
Charlotte, NC USA
Thursday, July 09, 1998 at 02:41:37 (EDT)
I have had these things since '87. How I wish I could take them all away from
everyone. My regular yearly cycles stopped in '93 and I now have the perverse pleasure of
fearing my own bed. Currently, CH will hit just about any time of the day and does not
have to follow any pattern. Great Site, I'll be reading and learning. JTH
John Hernick <Hernick@pclink.com>
Minneapolis, mn USA
Wednesday, July 08, 1998 at 23:07:39 (EDT)
I have been suffering from clusters for years, usually an epsisode of 4 to 6 weeks
every 2 to 3 years. Past treatment usually consisted of Loracet, or Percodan with some
kind of muscle relaxant. I am happy to say that a neurologist took charge with me and
prescribed Prednisone 60mg/day x 5 days, verapamil during the day, and Imitrex injectable
at night. This cocktail of drugs knocked the clusters out almost immediately only after 3
weeks into the cycle... There seems to be hope now.
KEVIN <FOOTRAM@AOL.COM>
ANDERSON, IN USA
Wednesday, July 08, 1998 at 11:56:58 (EDT)
Just found the site. Don't even know why I was looking-- I don't even like the word
"headache" when I'm not in a cycle for fear of triggering a new one. Have been
clustering for over 30 years. Probably earlier and treated for sinus infection. Last cycle
(2 mos ago) WORST ever. In some ways, it is depressing that so many people know Real pain.
Thanks again for the site and caring.
John Greer <jmg@ebicom.net>
Columbus, Ms USA
Wednesday, July 08, 1998 at 10:28:35 (EDT)
Just found the site. Don't even know why I was looking-- I don't even like the word
John Greer <jmg@ebicom.net>
Columbus, Ms USA
Wednesday, July 08, 1998 at 10:25:35 (EDT)
Amazing to find this huge number of CH sufferers when I've never actually met
anyone. I first started getting CH's when I was in my late teens (now mid 40's).They would
last for 4-6 weeks, building to a crescendo mid-cycle, when I'd get 6-8 headaches a day.
At first they occurred every year, then every 2 years. Then I had a break of 4 years &
now, a break of 10 years so I am desperately hoping that they've gone forever. I've had
other serious health problems so don't dare to imagine how I'd cope with CH again. Doctors
tried various treatments with me . The only thing that seemed to help break the cycle was
a drug called Deseril which I haven't noticed anyone else mention. Because no-one could
ever tell me anything about CH's, I tried to identify anything common to my attacks. One
possibility was the fumes from oil-based varnish & I always avoid this now. I also
found that sinusitis could precipitate an attack &, on another occasion, I think it
was a combination of very bright sun & drinking port. All sufferers have my greatest
understanding & sympathy---- I agree that the pain is even worse than childbirth &
at least you know that is going to end. One last comment---- a few years ago, I saw a
snippet in our local paper suggesting that some overseas CH research had found inhaling
extract of capsicum successful. Has anyone heard of that?
Lou-anne
Hobart, Tasmania Australia
Wednesday, July 08, 1998 at 08:31:45 (EDT)
Thank God I'm not alone! Someone understands this pain! I guess mine CH is a little
atypical, as I have a chronic but livable "shadow" all the time, which flares
into a CH at seemingly random times and of various intensities. The ones that happen
during the day I can usually work through, and half-way function, with the help of lots of
asprin. The ones at night make me want to kill myself, just to end the pain. Does anybody
else have this day/night difference?
Michael Castle <nightwave@juno.com>
CA USA
Tuesday, July 07, 1998 at 21:45:35 (EDT)
i have suffered with this beast for ten years now. the cluster headache is a
nightmare of a headache. i was diognosed ten years ago , after going to several doctors
and mri,s and cat scans, iwent to a doctor at new york hospital, who gave me prednisone
and a drug called cafegot.which is 100 mg of caffiene and it worked it broke the cycle. my
previous bout with clusters was july 1995.so it has been 3 years.until june of 1998 i
caught a cold which turned into a sinus infection, which i believe triggered anothe bout.
with these terrible headaches. i am currently taking prednisone and ergomar whiv=ch you
place under your tongue and it aborts the attack. now what iam tryin to do is break the
cycle in some way. does anyone have any suggestions.i would greatly appreciate it. the
ch's at 3 in the morning are bad if i can't take the ergomar fast enough. also has anybody
ever taken cafegot.it is still used in the treatment of cluster headachs??? talk to you
all soon
rich <rjgilligan@aol.com>
USA
Tuesday, July 07, 1998 at 21:22:53 (EDT)
I'm sorry you have these miserable headaches too! Best wishes and PAINFREE living to
you.
Darlene <thelents@juno.com>
USA
Tuesday, July 07, 1998 at 20:58:31 (EDT)
My battle with cluster headaches began in 1977. The spells last six weeks and do not
return for eighteen months.
Gilbert Perkins <GBP1954>
West Mifflin, PA USA
Tuesday, July 07, 1998 at 20:54:53 (EDT)
Have suffered from cluster variant headache for over 12 years. Headache has pain,
and episodic tendancies of cluster; but has extended length (2 - 6 hours) like common
migraine. Kind of a hybrid, I guess. Have been through the gambit of meds. Frustrating. I
hope that with each new introduction of meds., that maybe something will work. For now,
treatment with prednisone to alleviate the cycle; and narcotic pain killers in addition to
Oxygen has been the only solution; however this is no way to live. The prejudice and
stigma associated with pain killers drives me crazy; as I pray each day that a solution
will be found.
Julie Giera <widcat66@aol.com>
Bow, NH USA
Tuesday, July 07, 1998 at 20:32:11 (EDT)
I, myself, am a cluster headache sufferer. My attacks are usually spent with me
crawling on the floor, crying my eyes out, wishing to God that I could die, if it would
only end the pain. I have prided myself on being able to handle almost any kind of pain,
but the clusters easily bring me to my knees. No one can understand how a simple
"headache", can affect me so much, I tell them that if they could be in my shoes
for five minutes, while my attack was in progress, they would surely go mad. I finally
broke down and went to the emergency room today after suffering for almost a month, and
was injected with a $100 shot of Imitrex. In my opinion, it was worth every penny, but now
I am wondering just how long the Imitrex will keep the cluster at bay. I thank you for the
website. It is good to know that I do not suffer alone.
Robert Collins <howlingwolf97@yahoo.com>
Midland, TX USA
Tuesday, July 07, 1998 at 19:53:12 (EDT)
My first bout with cluster headaches was 3 years ago. I probally had 2-3 a week for
about 10 months then they stopped... until last week. Iv'e had 5 in 7 days. Hopefully I
can find some solace in these webpages.
Michael Lowing <tifosi@ameritech.net>
Plainfield, IL USA
Tuesday, July 07, 1998 at 17:24:42 (EDT)
Wow, I knew I was not alone but I had no idea that there were so many others that
suffered the exact same intermittent intolerable existence in which I suffer. After
reading some of the comments, I was astounded to see my own personal "hell"
being described before me. I hate to say it but it is nice to see that finally sufficient
numbers of CH-sufferers exist to warrant further research by pharmaceutical companies and
I can only hope that doctors will cease chronic eyebrow raising upon hearing the ample
descriptions of unbridled suffering. I am going through a series of CHs now and this set
seems to be fairly tolerable. I have been a sufferer for 10 years, I’m a 34 year old
male, and my CHs last approximately 5 weeks in the summer every year or every other year.
I do have a question for someone out there. My general practitioner has prescribed Zomig.
I know that this works well for migraines and other chronic long-term headaches, but as we
know, most individual CHs are over in about an (+/-) hour. "Has anyone used Zomig on
CHs with any success and has there been any significant side-effects?" In the mean
time fellow-sufferers, like the Cherokees in "The Outlaw Josey Wales", I will
"Endeavor To Persevere."
W. Bryan Bell <bryan.bell@lmco.com>
Fort Worth, TX USA
Tuesday, July 07, 1998 at 12:18:44 (EDT)
I have had CH for the last 10 years. All the medicine i use have no result. I'm
searching for something that at least could reduce the pain for a moment. If there is
something like that, please mail about it.
Jerry Mangal <jmangal@cq-link.sr>
Paramaribo, Suriname
Tuesday, July 07, 1998 at 10:14:09 (EDT)
I am 51 and have had a combination cluster?migrains since my late teens. What
worries me the most is my daughter, who is only 12, is now starting with headaches.
Albert Mura <organosulfur@hotmail.com>
Rochester, NY USA
Tuesday, July 07, 1998 at 08:47:17 (EDT)
Cluster Patient for 18 yrs...currently taking a drug normally perscribed for
epileptic patients..." Topamax" 25 mg. It basically numbs the entire body...
therfore blocking the pain of the cluster attack or as my doctor sees it (seizure)
sometimes it doesn't conquer so I have to resort to the nasal form of Imtrex...which after
approx..15 to 20 min. does the trick. The side affects of this treatment really are
abnoxious....tingling all over...similiar to a visit to the dentist when the novicane is
wearing off...but it is your entire body feeling this way...constantly nauseous but, as I
tell my doctor....it beats the heck out of the pain of these hellatious "
headaches". I tend to agree with those who say the word headache does not do these
demons justice! As for those who feel there are no Dr. who care I am here to say there is
a great man out here who was sent from God....Dr, Jack Klapper is my Neurologist....he has
never experienced a cluster....but when you speak to him you would think he had. He looks
so pained with sympathy for me when I go to his office....and I truly believe he is doing
everything in his power to help me. He doesn't spend a great deal of time holding your
hand or pampering you but you know it isn't lack of concern....it is only because he is
concerned about the other dozens of patients he has waiting in pain for his attention!!!!!
I recommend him to anyone and all!!!!! He is in Colorado....He truly is an angel...and he
knows his stuff when it comes to these monsters!!!!!! He listens and he will be your
advocate! I hope he doesn't mind me giving out his number....but for all your sakes....I'm
going to....303-839-9900 Jack Klapper...
CHARLEEN <DOWDSMAN@AOL.COM>
DENVER, CO USA
Tuesday, July 07, 1998 at 02:52:11 (EDT)
This is very informative, I have had these headaches for about 8 years now and have
only recently attributed them to clusters. I had thought they were due to alergies or
something.
John Gianni <jgianni@cescomputers.net>
Middletown, MMD USA
Monday, July 06, 1998 at 23:09:03 (EDT)
47 yo male. Retired Army CSM. Suffered my first one on 17 Dec 75. I thought I was
dying. It took 16 years for the doc's to figure out i did not have sinus infections. I
take Indicin & verapamil when I am on a cluster. If anything else works better, let me
know, PLEASE. It was nice to finally learn what i had was not a curse. I helped 2 other
people while in the army, one was only 19. It feels good to pass on the knowledge gained
from the pain--God Bless Us Everyone.
Robert Lambert Jr. <sklokty@hotmail.com>
Waynesville, MO USA
Monday, July 06, 1998 at 20:38:33 (EDT)
Boy am I glad to see a site like this. I was diagnosed with CH earlier this year.
Been having them since 92. It's nice to know I'm not alone and that other people go thru
the same thing I Do. BTW, how do you tell your boss your not coming in today because
you've got a headache? ;-)
Maurice Green <magree@hotmail.com>
Tucson, AZ USA
Monday, July 06, 1998 at 18:20:10 (EDT)
Thank you for the page! Imagine being a cop for twenty years and having ch the
entire time. Quite difficult to function at times. I've been to Mayo Clinic after the
moron doctors here didn't have a clue, two major sinus surgeries, two facial nerve
surgeries, and drugs, drugs, drugs. I've had ALMOST all of the drugs that are in this
wonderful guest book, and would strongly suggest DHE-45 and high doses of DEPAKOTE. After
years of reserch, I also came up with my own pain "elixir" if the DHE shot
doesn't work. Beats giving in to the bastards.
Ed <ed495@hotmail.com>
IA USA
Monday, July 06, 1998 at 15:50:30 (EDT)
Congratulations! I found your site while doing some web research for my husband -
Maurice Vincent - who is a headache specialist in Brazil. He has already some Cluster
headache patients both from federal University of Rio de Janeiro and private practice. In
Brazil, Cluster Headache is unfortunately misdiagnosed, however the knowledge about the
disease is improving. Best wishes, Beatriz
Beatriz Vincent <vincent@ensp.fiocruz.br>
Rio de Janeiro, RJ Brazil
Monday, July 06, 1998 at 14:51:07 (EDT)
I have been suffering from these things since 1988. I started getting them in the
summer around mid July, they lasted about 4 weeks. I'd always get them in the afternoon
everyday. I've only been getting them every two years. In 1990 I could set my watch by
them They started around the same part of the summer and I'd get them everyday at 1:10
P.M. and they'd last about 45 to 60 minutes for about six weeks. In 1992 they started
getting worse, they'd last longer and some days I would have more than one bout. The last
time I had them in the summer was 1994, I was all geared up for them in 1996 but I never
got them. Instead they started up again that winter around mid-January. My headaches
always started as a dull pain on my right side around the temple. The pain would gradually
get more intense. It would irratate my right eye making it sore and start to water. Then
it would spread to my right ear and eventually down the right side of my face to my jaw.
It was like having a migraine, a sore eye, an earache and twelve toothaches all at the
same time. Just yesterday afternoon I felt a dull pain in my right temple. I thought I was
getting them again but it went away. It was my girlfriend who suggested looking on he web
to see if I could find any information on them. I was very surprised to find a whole web
site devoted to the sufferers of these horrible headaches and to find out that there are
so many.
Gary Mollins <kellyk@interlog.com>
Toronto, Ont Canada
Monday, July 06, 1998 at 08:33:03 (EDT)
I knew I wasn't alone but my god I didn't know it was so crowded. Somewhat
comforting! My headaches started approximately 5 years ago (about the same time I turned
the magic #50). First thought it was sinus headaches, one thing led to another and here I
am, Imitrex and all. Just recently started 5HTP (50 mg). My normal rate of attacks is 2 a
month, depending on the weather. So I don't know if it's helping, however one side effect
is stomach upset. Will keep trying. My goal is to get off Neurontin. The only thing
Neurontin helps me with is sleeping, occassionally. . Anyone else out there who has sleep
problems? I honestly feel this is somehow related. Thanks for letting me "vent".
One quick remedy for relief during attack. Dab a little, very little, 100% peppermint oil
on area of pain. In my case, as 100,000 others, over the eye. Gives a deep burning
sensation. Works WONDERS.
Bev
NC USA
Sunday, July 05, 1998 at 16:32:30 (EDT)
Well forks, I just found this site and I’m impressed. July is my CH birth month
- July, 1966 32 years of this pain. I am starting another cluster. I was fortunate to have
gone 2 years without a headache. I had forgotten for 2 years how intense the pain can get.
Oh well, just another cross in life to bear.
Richard Belli <reb@brevard.net>
Melbourne, Fl USA
Sunday, July 05, 1998 at 11:21:40 (EDT)
My wife suffers from clusters and i just visited this page to find out more about
it. The sheer volume of info available floored me. Keep up the good work.
Ashwin <ashwin-p@usa.net>
Bangalore, Karnataka India
Sunday, July 05, 1998 at 09:22:25 (EDT)
i was just diagnosed with cluster headaches but i have been suffering with them for
2 long years not and i would really like to talk to other people who understand this
pain...i is starting to drive me crazy...hope to hear from you all...bye
crissy <mattie19>
vernon, ct USA
Saturday, July 04, 1998 at 08:53:32 (EDT)
Hi to all my fellow sufferers! I have had clusters for 19 years, and boy am I glade
this site is here. I am so tired of having to explain that I am not just having a Headach
to everyone as I am sure you are too. I have tried everything to ease the pain but nothing
helps. It is strange that Doctors will not give a pain killer to someone with cronic
pain(how ironic, don't you think?)becouse they think you will get hooked on them! Well,
enough said, I just take Excedrin all the time to cut the edge off it and very, very,
VERY, hot showers with strong water presure, it helps. I hope you all the best and pray
that atleast, people will learn what true pain is so they do not redicule us on top of the
pain. God bless us, each and everyone!
Bruce Scott Moncrief <bsmoncrief@aol.com>
Virginia Beach, VA USA
Saturday, July 04, 1998 at 01:12:18 (EDT)
I've had these monsters for about 15 years now and have taken just about everything
everyone has mentioned here. Have had the most success with Prednisone, oxygen, and one
thing I haven't seen anyone mention--DHE capsules. I have been hospitalized four times for
IV DHE treatments which provided relief (no headaches) during the treatment but they came
back about 12 hours after stopping the IV. After the last hospitalization my Dr.
prescribed the DHE in capsule form which was made up by a compounding pharmicist. This
stopped the CH's for almost a year and a half after dealing with the chronic variety.
During the spring of '97 they returned with vengeance and were finally tamed with Imitrex
and Sansert but not completely eliminated. I started taking the DHE again and it put them
into remission for the last six months. Currently I am experiencing mild CH's and expect
this will build to a full blown episode over the next few months. In reading this and
other boards I am about ready to try Diflucan or B2 but dread the inevitable because when
the CH really rears its ugly head there will be many that nothing but endurance seems able
to control. I will supply any information that I can to anyone interested in trying the
DHE capsules (prescription required) and would also be interested in any suggestions
anyone may have. There has to be a way to beat this affliction, it will happen. I will
respond to e-mail, hang in there and try to be pain free.
Chuck Mehalic <c.mehalic@mcione.com>
Olmsted Twp., OH USA
Thursday, July 02, 1998 at 22:40:05 (EDT)
Thanks for all the info on your site. Hopefully, someone will come up with a cure. I
am a senior and have had them for 4 years - chronic.
R.Bertrand <rbertrand@mindspring.com>
VA USA
Thursday, July 02, 1998 at 21:40:15 (EDT)
I have suffered from chronic cluster headaches for the past three years....trying
various medications, nothing helps. It hits between 2 and 3 am every morning.
pam scott
USA
Thursday, July 02, 1998 at 15:02:18 (EDT)
hi all: having my semi-annual (summertime) cluster just now, and just happened on
the site. i knew i wasn't the only one out there, but it's nice to hear from other
sufferers. i've been on the ch trail for 10 or a dozen years now (i'm 41-- how classic ).
been ciphering around on the net lately and intend to see my physician shortly, where i
will tell her i want to try the nasal lidocane and the oxygen therapies, neither of which
i have experienced before, or i want a referal to a neurologist, whichever she prefers.
i'd appreciate hearing from anyone who had tried these and could tell me what to (and not
to) look forward to. been taking oral imitrex for three years now (before i just suffered)
and i will say that when it works, it works great. unfortunately, it isn't always
effective, nor is it (in oral form) rapid enough to suit me. lost three days work last
month-- this shit has got to stop! seeya, dominic
dominic tramonte <famousd@hotmail.com>
houston, tx USA
Thursday, July 02, 1998 at 13:54:13 (EDT)
thanks for the info
henry christ <hankchrist@aol.com>
denton, md USA
Thursday, July 02, 1998 at 12:37:04 (EDT)
I have been a cluster sufferer from the age of 10, that's over 30 years. I have
tried everything. I get some relief from O2 and fiornal/codiene. But they frequent more
each day.
Vonna <VonnaMas@aol.com>
Deerfield, IL USA
Thursday, July 02, 1998 at 10:24:48 (EDT)
Travis from Austin... PLEASE send me a message!!!! Your email address doesn't work!
DJ <dj@clusterheadaches.com>
Wichita, KS USA
Wednesday, July 01, 1998 at 22:08:19 (EDT)
Belinda is a friend of mine who has a chronic lung condition that has meant she has
been on massive amounts of drugs for over 10 years, including chemo therapy, and huge
doses of cortisone type drugs .....
Belinda jONES <steve.schreiber@dnr.qld.gov.au>
Brisbane, QLD Australia
Wednesday, July 01, 1998 at 20:55:23 (EDT)
God Help Us All
kelly <presson@centramedia.net>
tx USA
Wednesday, July 01, 1998 at 19:29:49 (EDT)
I just started a cluster cycle, and was most pleased to find this web site. I have
known others with clusters, but have never heard of anyone that found relief. I am most
disturbed by the posting that said "Are there any doctors listening ?", to which
there was no reply. I'm about as pissed off at the stupid American medical community as I
could possibly be. I would never wish clusters on my worst enemy, but think it would be a
good thing if a few more doctors got them. I never heard of Oxygen for relief of symptoms,
but will go out and get some today. Good to hear from you all, and hope you find a way to
live pain free soon !
Michael Jacobs <michael.n.jacobs@boeing.com>
Clinton, WA USA
Wednesday, July 01, 1998 at 13:11:24 (EDT)
I am a chronic sufferer who is very close to giving up.
Travis Piccolin <travis.piccolin@amd.com>
Austin, TX USA
Wednesday, July 01, 1998 at 12:50:36 (EDT)
Can anyone tell me if they know anything about a procedure that was explained to me
and in some forms could possibly represent torture. A Dr. I saw for a F/U suggested that I
allow an ENT to insert a long like tube into my nose on the left side and deaden the
"GALGLIAN NERVE(sp?) whuch the think might be somehow connected to the pituatry
gland?? He was not sure of this procedure and I was not letting anybody touch me. He had
never really done it any one but really wanted to try it out and I opted out of that idea.
His other brainstorm was to inject the back of my skull with predisone shots which would
leave a huge egg. I said I'd rather bang my head against the wall for that effect THANKS
but I'm out of here!! Have any of you ever heard this?? I'll think I'll just stick to
Imitrex injections and verapamil and 02 for now.His idea would have to only be used if all
other attempts failed long term. Then I still wonder about messing with glands that are
already really MAD right now.He said he'd do it if he was me and I of course laughed
hysterically even through the pain and said "Why don't we do it to you first doc and
see if you live to tell. Please let me know if I'm like finding really bad medical advice
out there or if he's possibly on to something??
Beth <lassie@execpc.com>
WI USA
Wednesday, July 01, 1998 at 01:36:50 (EDT)
