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 February 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
Hi fellow CH's. 49 year old male here. In auto accident in '71, went thru windshield
and suffered head injury. Lived thru that, but did not think I would live thru my first
episode of CH's 7 years later. So has been 21 years, but my episodes come approx. every
5-6 years and last 3-4 months, 3-4 times a week and almost always about 1-2 hours after
falling asleep. Hard to stop then, so I'm up usually walking around outside and massaging
my left temple area. My last episode a couple years ago although I finally began taking
pure oxygen which helped also. Others are right when they say that doctors don't
understand CHs. Even some Mayo Clinic Nurologists that I've seen were reluctant to put me
in this headache category at first, then started thinking so after my 2nd episode. The
funny thing I find is that while many people tell me they get slight headaches very often,
most cluster people are headache free between CH's. I haven't had so much as a tingle of
pain since my last episode 2 years ago. I hope to be prepared for the next ones. I'm glad
I found this site. God bless you all!
Dennis <sitzbenson@webtv.net>
Fountain City, WI USA
Sunday, February 28, 1999 at 22:34:49 (EST)
I have walked through the valley of the shadow of clusters for 18 years now,didn't
know what was wrong with me for the first 10 years. I'm 37 now,quit smoking for 8
years,didn't help.They come every three years,started my episodes again about a week
ago.oxygen works really well, I also use breathright nose strips which really works well.I
also am on antidepressants, wich i also consider a plus. make no mistake I clearly
understand the red hot coal behind my right eye, defines physical pain I never imagined
possible. I endured 10 years with no aid, and am greatful for any thing that helps! My 02
tank goes wherever I go,and this the first time my insurance company is doing its part,
thanks to my family doc. He's the one who discoverd 02 for me 6 yrs ago,God bless Him
forever! My wife does.You all hang in there somebody is gonna figure it out and I tell you
what, whoever does will be giving life, because its hard to have one with these demons.
stay positive and have a clusterfree day.
Jerry <jmanning@comsource.net>
Evansville, IN USA
Sunday, February 28, 1999 at 21:18:29 (EST)
Thank You DJ for producing this most valuable of all internet sites to those who
know real pain. JB
Jim Berry <BerriesJSRD@webtv.net>
Landers , Ca USA
Sunday, February 28, 1999 at 18:47:33 (EST)
Here is a good one for all my brethern in pain. Close the bathroom door, turn the
lights out, turn the shower on as hot water as you can stand it, get in and run water
directly on your head. I think this lowers your blood pressure and helps reduce the pain.
Then hope the medicine kicks in. Its sometimes helps. But be careful, two nites ago I
burned my scalp and temple area by cranking the hot water to scalding. Whats funny is I
didnt even know I was burning myself at the time because that maniac behind my eye thought
it was funny and kept jabbing his large and very sharp sword into those critical areas of
my pain. Then by Gods mercy he took the rest of the nite off. As it was once said "I
feel your pain." God Bless.
Chris <ccmch@concentric.net>
Ofallon, MO USA
Sunday, February 28, 1999 at 11:56:31 (EST)
Thank God I'm not alone. I'm 22 and have cluster headaches. They effect everything
in my life. I'm trying to finish school and am a 13 month newlywed! These should be the
happiest days of my life! My general practioner actually through up his hands and sais he
didn't know what else to do! I now am seeing a neurologist, he's okay but not too
sympathetic! I have had to go to the ER sometimes 2x in one week. I feel as though I'm
crazy, like nonody knows what I'm going through. I'm so thankfull I found this site.
Unless you've suffered w/ these nobody knows your pain, literally. Please Email me if you
have any suggestions or advice. I currently am on beta blockers and painkillers(fiorinol
W/ codine ) and midrine) but, sometimes I have to go get shots does anyone else?
Frustrated.... I feel as though they'll never end. Maybe we could start a research
foundation of somesort, if we all could come together maybe we'd make progress! Hang in
there!
Carrie <Bcollier@soltec.net>
Champaign, IL USA
Saturday, February 27, 1999 at 23:49:16 (EST)
Much thanks I have received 2 very supportive letters which truly help knowing
someone cares. Thanks again Joanne
Joanne Nord <Joni@netvista.net>
Walnut Creek, Ca USA
Saturday, February 27, 1999 at 19:17:57 (EST)
Its great to finally find some detailed information about clusters. I have suffered
from them anually for over twenty years. I have learned that when I think I have found a
long term preventative drug to be cautious. Some drugs like inderal work great but loose
effectiveness after a couple of years. I currently use Sansert and Procardia as
preventatives and Immitrex injections followed by Amerge a half hour later for attacks.
This all seems to work well, but I have had to spend over $1,000.00 per month to pay for
these drugs.
Lee Herfurth <leeh@sonic.net>
Cloverdale, CA USA
Saturday, February 27, 1999 at 18:35:25 (EST)
Hello my brothers and sisters, So glad to find you.I really truly belived i was by
my self or just insane.....which some doctors would rather belive it seems.It feels so
good just sitting after another bad night,typing this to the people who really really
know. I AM SO GLAD I FOUND YOU.....Icheck the site every hour now just..........HOPING!!!
Jeff major <mandy@execpc.com>
South Milwaukee, WI USA
Saturday, February 27, 1999 at 07:22:04 (EST)
I have been frequenting this site for the last year, and I must say you have done a
wonderful job!! I have learned so much from this site, I often take the information I
gather from here and bring it with me to educate my doctor. I have suffered since I was 19
(19 years ago)and for so long I did not know what I had or how to treat it, I felt I was
alone. There are so many very caring people on this site!! I would love to never have
another CH, and I know that is not likely, but since I have to suffer I could not think of
a better place or better people to do my suffering with!!!
Clara Lee <clara_m_lee@hotmail.com>
Penticton, BC Canada
Saturday, February 27, 1999 at 03:21:18 (EST)
Well its now 9:15 and I am in the middle of my 3rd episode of the day,but as I said
earlier,since I tried my sons ritilan it seems much less severe but it is still here.I
hope and pray for the day when we are all free from this god awful pain.I think this site
is also a life savor because when I hear of all your pain I finally know that I'm not
crazy,and this syndrome is real.thank you to everyone for sharing your stories and we're
not alone...
Kirk J Hall <Khall10817@aol.com>
Mobile, Ala USA
Friday, February 26, 1999 at 22:18:48 (EST)
Thank you all for helping me realize even more that we are all in need of a cure.
Not even a cure maybe just something to allevate the pain. To much of my life is wasted
making time for these demons. Its been this way for nine years and its not getting any
easier. We have to be strong and pray and hope for that someone who will be our saviour.
Until then relax and enjoy every CH free minute, you all deserve it.
Brian D <BDI00000>
Cherry Hill, NJ USA
Friday, February 26, 1999 at 20:49:25 (EST)
Just one more quick note,I don't have green or hazel eyes,just lght brown..I don't
know but I don't think their is any corrilation between green,blue,brown or what ever I
think we are just the unlucky ones with this terrible syndrome...Thanks for listening
again....Too much pain...not enough relief
Kirk jHall <Khall10817@aol.com>
Mobile, Ala USA
Friday, February 26, 1999 at 16:36:26 (EST)
Well it is now 2:30 and I'm in the middle of another attack I had seen someone say
try rittilan so I tried some of my sons and so far it hasn't stopped the attack,but it is
far less severe.If any one has any other suggestions please write,I hate this time a year
and I know tonight I'll have another one..I am not looking forward to tonight in fact I'm
downright scared..This is no way for a father of 4 to live;but I am a surviver and this to
shall pass...Thanks again for this site.
Kirk J Hall <Khall10817@aol.com>
Mobile, Ala USA
Friday, February 26, 1999 at 15:35:29 (EST)
Hi! I have had CH for about 5 yrs. and have a half-chronic type of CH. Attack
periodes last months, up to 6-7 attacks per day But...still...life is worth living....
Like to hear from other that have CH
Trygve Aasjord <traasjor@online.no>
Fauske, Norway
Friday, February 26, 1999 at 14:55:43 (EST)
My husband just suffered his first bout this past January. Loretta's description on
the first page of this web-site is dead on. I, too, have driven my husband screaming,
crying and writhing in pain too many times than I can count to the emergency room over
these past few weeks. I would do anything if I could help him alleviate the pain. I have
recommended this site to our family and friends that they may become more informed about
what he is going through. Reading through this site, we feel more informed and much, much
less alone. Most importantly, we feel hope.
Heather Feland <hfeland@oeb.harvard.edu>
Cambridge, MA USA
Friday, February 26, 1999 at 14:31:37 (EST)
My husband just suffered his first bout this past January. Loretta's description on
the first page of this web-site is dead on. I, too, have driven my husband screaming,
crying and writhing in pain too many times than I can count to the emergency room over
these past few weeks. I would do anything if I could help him alleviate the pain. I have
recommended this site to our family and friends that they may become more informed about
what he is going through. Reading through this site, we feel more informed and much, much
less alone. Most importantly, we feel hope.
Heather Feland <hfeland@oeb.harvard.edu>
Cambridge, MA USA
Friday, February 26, 1999 at 14:31:31 (EST)
I have been having these cluster headaches for about 15 years. I have the classic
symtoms. Each year about Dec. thru Jan. they come on like gangbusters.
Charles Madden <cgi145@aol.com>
Hanover, MA USA
Friday, February 26, 1999 at 14:11:40 (EST)
I'm new to this. I started getting severe sinus headaches following a sinus
infection in early December, 1998. By January, I had full-blown cluster headaches. I'll
get headaches for a couple of weeks, get a week off, get another two weeks of headaches,
et cetera. This page has been a very valuable resource.
Andrew Feland <roo@sneaker.net>
Arlington, MA USA
Friday, February 26, 1999 at 13:45:14 (EST)
I'm 39 startin getting CH when I was 28 I always get them around the same time of
year. Been in remission for 3 yr's but their back. I'm in week 8 and am prayin they wont
last much longer. been off the prednisone for 2 weeeks amd am taking Amerge for 2 out of
the 4 attacks a day and it works 75% of the time.I always had them at night but now am
starting to get them at 5:00PM and in the morning around 9:00 making it extremely
difficult to work or consentrate. They should be over soon.Great site,hang in there
Ed Johnson <ewj@pot.infi.net>
Tamaqua, Pa USA
Friday, February 26, 1999 at 13:31:55 (EST)
I'm in a small minority, as I am a woman who gets CH. I have been getting them for
the past 22 years and with the odd exeption, they come like clockwork each fall. This year
however, I am having my attacks now, in February, and can't wait for them to end!
Sometimes it feels like they never will. I have been "through the mill" as well
and there really seems to be no help from the medical profession. I have recently heard
that inflamation in the neck is one cause, so I've been taking anti inflamatory medication
and I think it may actually be helping! I also find that during an attack, the fastest way
to relieve the pain is to sit in a recliner with my head proped straight and ice cold
cloths on both my neck and forehead (in a very quiet room). The cold seems to numb the
pain and although it's hard to sit still and relax, that seems to be the best way to rid
the pain.
Maggie
Prince George, BC Canada
Friday, February 26, 1999 at 13:28:51 (EST)
I'm having an attack right now and it feels like my head is going to explode,I only
have these headaches this time of year,usually one in the morning such as now and one at
night at 9:30 like clock work. It is always over my right eye,first a dull ache then its
like a damn bursting in my head. I have had these headaches for 10 years now,1st at 23 now
I'm 33.I sometimes wish I cuold pull my right eye out and reach into my brain and pull it
out.This cluster has lasted so far for 25 min since the onset,it seems to be subsiding,but
last night it lasted for over an hour and was probably the worst one I have ever had.I
just wanted to thank you for listening since it seems like no one knows what we go
through.
Kirk J Hall <KHall10817@aol.com>
Mobile, Al USA
Friday, February 26, 1999 at 09:26:39 (EST)
Hi I've had CH for about 23 years. They used to occur every 2 years and last about
3-4 weeks with 2-3 episodes a day. Three years after my first episode I saw a doctor for
the first time and he diagnosed it as CH right away. He prescribed Midrin which works if I
take it at the very onset of the attack; if I wait too long it doesn't help. Last week,
after about 7 years, I began getting the headaches again. They still are painful, but not
as intense as they used to be. I read that oxygen helps so I tried hyperventilating and to
my surprize it seemed to help. What the hell, since I'm pacing around in the dark I might
as well do something. That also may explain why, as someone suggested, sex might help.
That's even better than pacing and hyperventilating. My doctor, not the same one that
originally diagnosed me, gave me some Imitrex to try. How does Imitrex compare with
Midrin? Ron
Ron Locatelli <Ronl@pacbell.net>
Castro Valley, CA USA
Friday, February 26, 1999 at 02:02:02 (EST)
Hi I've had CH for about 23 years. They used to occur every 2 years and last about
3-4 weeks with 2-3 episodes a day. Three years after my first episode I saw a doctor for
the first time and he diagnosed it as CH right away. He prescribed Midrin which works if I
take it at the very onset of the attack; if I wait too long it doesn't help. Last week,
after about 7 years, I began getting the headaches again. They still are painful, but not
as intense as they used to be. I read that oxygen helps so I tried hyperventilating and to
my surprize it seemed to help. What the hell, since I'm pacing around in the dark I might
as well do something. That also may explain why, as someone suggested, sex might help.
That's even better than pacing and hyperventilating. My doctor, not the same one that
originally diagnosed me, gave me some Imitrex to try. How does Imitrex compare with
Midrin? Ron
Ron Locatelli <Ronl@pacbell.net>
Castro Valley, CA USA
Friday, February 26, 1999 at 02:01:50 (EST)
Came across this site a few days ago while looking up info on Prednisone that has
just recently been subscribed for me. I have lived with these CH's for 35 years now. I
can't add much to what has already been posted here except that fiding this site was a
real eye-opener for me. I was one of those that had no idea of the many others that suffer
with these attacks. I synpathize with all of you.
Mac Machurek <machmac@ida.net>
Pocatello, ID USA
Thursday, February 25, 1999 at 19:16:52 (EST)
Hello. I have been a cluster suffer since Sept. 1986. I am primarily chronic, but
also episodic in the sense that in the Spring and Fall my clusters get worse. I have tried
more medications than I can think of. Fortunately lithium, verapamil, neurontin and
cafergot generally keep me together,but they are far from perfect. I have had the same
neurologist, Stewart Tepper (Seattle) since the beginning, but I likely will be moving on
soon. I have also visited another doctor in Kirkland, WA for confirmation and also have
seen Dr. Lee Kudrow in Los Angeles, CA. I have been qualified to have an operation which
leaves the cluster side of the head permamently numb, but I am still considering this
option. Has anyone tried Diflucan? Anyway, it's nice to "meet" everyone. Send me
a note sometime! --Steve
Steve Wilcox <TeamBSI@AOL.Com>
Kirkland, WA USA
Thursday, February 25, 1999 at 19:04:35 (EST)
Hi I,m 40 years old had clusters for 20 years,but have now found lithium carbonate
works for me.My father also suffers with Clusters but his are less severe now that he is
70 years old.Hang in there it gets easier! Great web page by the way.
Robin Stoton <fbs@compuserve.com>
banbury, oxon uk
Thursday, February 25, 1999 at 12:25:14 (EST)
Just found this site a couple of months back. Thank you DJ. Have had headaches for
about 20+ years. Back in my 20's (no insurance) went to the ER, thought it was sinus. ER
Doctor said I had a tension headache and that the ER was not the place for this. He gave
me Tolectin. I went to see another Doctor who was so amazed that I had a cluster in his
office he ran out of the room to get his nurse so she could see one. Tried 02 the wrong
way. Tried giving it to me nasally instead of with a mask. Said he was sorry that he had
nothing else for pain in his office. Gave me a stern lecture on Ativan. "It's just as
bad as drinking 3 or 4 Martini's a day!!". Another Doctor had me taking Esgic Plus 3
times per day which caused rebound. Went to another Doctor and....you know. Board
Certified from a box of Cracker Jack. New Doctor is better and headaches are now in
remission (2 weeks and counting!!) If I only knew then what I know now!! Wonderful place
Wonderful people!!
Phil Cornwell <pcornwell@springnet1.com>
Springfield, IL USA
Thursday, February 25, 1999 at 10:16:04 (EST)
I've been a ch sufferer for 11 years chronically.One point i would like to mention
is years ago before i started working for a big company i used to smoke pot to get rid of
my headache and it would work very well with less side affects than all the other meds
i've been on. Alchohol is legal and much more dangerous than pot why????
mike <me031274@aol.com>
forked river, nj USA
Wednesday, February 24, 1999 at 22:07:16 (EST)
This may not be for everyone ,but I have been chronic for 11 years with no doctors
being able to help me.The only thing that has ever helped me was vicodin 2 pills at
bedtime and i was great,But unfortunetly my doctor said no more.THANKS ALOT. But anyway i
started to think back to the days when i didn't have to go for drug testing at
work,Because i will tell you something pot,refer,marajuana what ever you want to call it
helped me so much.It should be legalize for are treatments.I used it for a few years and
it worked wonders for me ,but then came around a thing called drug testing for jobs.So i
had to stop,and by the way after 3 years of use i still was not addicted to it. Now i
suffer just like everbody else looking for an answer that just dos'nt seem to ever come.
marajuana needs to be legalized for this condition.Let's think about this achohol is legal
and in my eye's it seems to be far more dangerous then marajuana and marjuana as far as i
can tell is much less addicting. All comments are wanted whether they are for or against
marajuana
Michael <me031274@aol.com>
forked river, nj USA
Wednesday, February 24, 1999 at 21:40:20 (EST)
I've been suffering for 11 years and finally found something that actually helped me
for 5 months.It's a real bitch when your doctor says he can't help you anymore.
Michael Ettelman <me031274@aol.com>
Forked River, n.j. USA
Wednesday, February 24, 1999 at 19:28:06 (EST)
hello, i am also a cluster sufferer and i like to help and be helped in this
excruciating pain.thanks
JOSÉ MANTA <mop85696@mail.telepac.pt>
LISBON, PORTUGAL
Wednesday, February 24, 1999 at 19:00:32 (EST)
My fiance has been suffering from Cluster headaches for 11 years now. he has been on
all medications and has been to the cleveland clinic for 2 surgery's. none of which has
worked. He was perscribed some kind of pain killer that was actually helping him but now
the doctor will not perscribe it anymore. so again he is getting headaches about 4 times a
day. he is giving up hope and is getting very tired of these doctors turning him away
because noone can help. does anyone have any ideas that he can try. If so please let us
know.
Karen <ME031274@aol.com>
Forked River, NJ USA
Wednesday, February 24, 1999 at 13:11:46 (EST)
My fiance has been suffering from CH's for about 11 years now. For the first 8
years, it was chronic. Just recently turned to episodal. He is currently out of remission
now. On 540mg of Verapamil. We'll see how this works. Hope everyone finds something to
help them with this horrible nuisance.
Stacey Creditor <scredito@hinda.com>
Chicago, IL USA
Wednesday, February 24, 1999 at 11:45:51 (EST)
I am know in my third battle with CHs in the 1990s! My wife found this wonderful web
page that brought tears to my eyes as I read some of the stories and battles that others
are also experiencing. I feel like a traveling drug store and always wondering were I
stand on my perscription for my Imitrix shots and if I have enough to make it another day.
It has been four years since my last attack and they seem to come during the winter and
during periods of high stress. Thanks for having this forum available for us CH sufferers!
David M. Easley <deasley@wa.net>
Gig Harbor, Wa USA
Wednesday, February 24, 1999 at 02:19:13 (EST)
Twenty four years of CH's. The last four have not been to bad. As I get older the
pain seems less but longer. Oxygen works most of the time, especially at night. The VA
pays for my oxygen. The navy tried most of the drugs I see listed on me years ago. I
really wish this site was not nessary!
JLeClare <jdleclare@netscape.net>
USA
Tuesday, February 23, 1999 at 20:03:49 (EST)
I have had CH for 12 years (episododic). I currently am in my fourth episode with
two-to-three year remissions. I have tried it all too. You all know what the pain is like,
I won't go there. Just started a predisone stacker. Have tried O2, ergomar et al to a
limited degree of success. I believe DR. Gary Mellick may be on to something with the
Ritalin. However, I think my personal physician thinks I am after something else. No one
seems to be aware of this treatment. I just want help. I think the Ritalin is worth a shot
here. It's ridiculous that I know more about CH's than most nuerologists. But that's what
my $750.00 conversation with mine revealed. Get on the Ritalin bandwagon...because nothing
else will break the cycle only illeviate the symptons. I'm at my green/hazel eyed wit's
end.
Scott Frazier <h2otech@mocom.net>
Springfield, MO USA
Tuesday, February 23, 1999 at 11:26:48 (EST)
I have had CH for 12 years (episododic). I currently am in my fourth episode with
two-to-three year remissions. I have tried it all too. You all know what the pain is like,
I won't go there. Just started a predisone stacker. Have tried O2, ergomar et al to a
limited degree of success. I believe DR. Gary Mellick may be on to something with the
Ritalin. However, I think my personal physician thinks I am after something else. No one
seems to be aware of this treatment. I just want help. I think the Ritalin is worth a shot
here. It's ridiculous that I know more about CH's than most nuerologists. But that's what
my $750.00 conversation with mine revealed. Get on the Ritalin bandwagon...because nothing
else will break the cycle only illeviate the symptons. I'm at my green/hazel eyed wit's
end.
Scott Frazier <h2otech@mocom.net>
Springfield, MO USA
Tuesday, February 23, 1999 at 11:25:59 (EST)
I have suffered from clusters for seven years. i take imitrex, but, as you know,
this gets expensive when insurance cos. only allow you 9 pills per 20 days. I take small
doses of liquid Benadryl throughout the day, and this seems to keep the clusters under
control. Hope this proves helpful.
Terry <tpence@awcc,state.ar.us,
or pence@alltel.net>
Conway, AR USA
Tuesday, February 23, 1999 at 10:00:53 (EST)
Hello I'm 23 and have been suffering these headaches since I was 16. In the last 8
months I have been told that I suffer from cluster head aches. The doctors are treating me
like a guineapig. Try this and try that. Does any body know of any thing that works with
out making you feel sick.
Cameron Murray <Camm@xtra.co.nz>
Bay of Islands , New Zealand
Tuesday, February 23, 1999 at 04:31:52 (EST)
I have had cluster headaches for 10 years, and I would like to correspond with
cluster headahe patients. I am 48 years old, and I feel like the prime of my life has been
taken away from me. I am no longer chronic, but this plague has definitely taken it's
toll. I will answer all of you that I can.
RON MARINO <MARINONET@WORLDNET.ATT.NET>
CLEARWATER, FL USA
Tuesday, February 23, 1999 at 02:17:29 (EST)
It's good to find a group that understands. I am in my first episode in 20 months. I
spent Friday night in the hospital and Sunday was hell. After 17 years you would think
these things would get easier to handle.
Gordon Edwards <gse@mindspring.com>
Stockbridge, GA USA
Monday, February 22, 1999 at 12:25:48 (EST)
my headaches started about 7 years ago. recently, they have been getting more
frequent and intense. i'll be making my second trip to a neurologist tommorrow but i don't
have much hope in him. nobody around me really understands the pain. "take some
aspirin !!!" my boss says...being a cop i am very limited in what i can take for the
pain. it's now affecting my marriage, because i can't even go out with my wife to a simple
dinner without an attack. a good day for me is 4-5 episodes. thanks.
mark <m66p@aol.com>
pittsburgh, pa. USA
Sunday, February 21, 1999 at 23:00:26 (EST)
As a federal judge who primarily hears cases involving persons who are claiming to
be disabled, I deal on a daily basis with the subjectivity of pain and how it relates to
the concept of disability. Although I've always considered myself a compassionate person
(a loving family and a strong Christian background helped there), suffering from
"clusters" has given me a new perspective on how differently some people deal
with pain. My headaches only began in earnest 2 months ago, and it wasn't until last
Friday that a "correct" diagnosis was made. I hear testimony from a lot of
people who I can tell have an extremely low pain tolerance. What is disabling to one
person, others can take in stride. Although I've broken bones, lived through the nightmare
of shingles, had prostate infections that felt like my insides were caught in a vice and
damaged cartilege so that bones were rubbing together, nothing in my limited experience
could have prepared me for the pain of these cluster headaches. This morning at 1:30 a.m.
I was awakened again and within 10 minutes felt as though someone had driven a flaming
steel spike up into my upper left jaw. It built to an intensity that made me want to do
SOMETHING . . . ANYTHING . . . to stop the pain, but all I could do was sit very still and
wait for it to pass. If I didn't have a strong faith in God and if I weren't SURE the pain
would pass when it hits, I don't know what I'd do. My late father, a postal carrier, was
an avid hunter and fisherman. I was raised in a house full of guns and sporting equipment,
and still have a lot of my dad's stuff lying around (no kids here in our house). I
announced at breakfast this morning that after the pain I experienced last night, we would
NEVER have a loaded gun on the premises. That's a promise I'm making to myself. My biggest
"fear" I'm fighting now is trying to convince myself that it's o.k. to fall
asleep tonight! I'm sure this will pass . . . eventually! Thanks for listening!
Perry <pjrtc@ameritech.net>
OH USA
Sunday, February 21, 1999 at 21:40:25 (EST)
My Mother has been on disability for 14 years because of Cluster Headaches. She has
been in the chronic stage for 14 years. We have tried everything we can get our hands on.
This is the first I have heard about Diflucan, I will research it because I have no choice
but to grasp every straw I can get my hands on. I'm afraid this is the end for my mother,
she cannot take the pain any longer. I need to find the answer...soon. My worst fear...I
also have Cluster Headaches, how long will it be before I have to suffer so. Please, I
need any help I can get!!!
Alane Fife <CESNO 66>
Redding, CA USA
Sunday, February 21, 1999 at 21:24:43 (EST)
As a cluster-headache sufferer, I’ve been both lucky and unlucky. I’ve
been lucky to the extent that I have six years between attacks. I’ve been unlucky to
the extent that it took me from my first attack in 1956 to 1986 to realize that there was
a pattern and to get the proper diagnosis. Not that that has made any difference, since no
doctor has been able come up with any way to alleviate any of the agony of the headaches
that my dear wife has nicknamed “groaners.”
Wilson Gray <hwgray@fas.harvard.edu>
Boston, MA USA
Sunday, February 21, 1999 at 03:06:19 (EST)
It is nice to know there is a place to come and share experiences as well as gather
information on this scurge. Hopefully a perminent cure can be found in our lifetime.
Biagio Tauro <blaise52@sprynet.com>
Columbus, Oh USA
Saturday, February 20, 1999 at 11:10:10 (EST)
i suffer from cluster headache, or as we call it here in denmark, hortons headache.
i am 48 years old, and have had the headache for about 13 years in periodes of 3 months, 1
- 2 times every year, but not at the same time of the year.
Henrik Lading <bjerg-lading@post.tele.dk>
Gadstrup, Denmark
Saturday, February 20, 1999 at 10:46:11 (EST)
Its nice to have an explanation for my headaches. I have discovered that Excedrin
Migrane is very effective in calming the pain. Hot compresses have also helped, but not
always. My chief concern is whether there is something more significantly wrong if the
headaches are more frequent. Some days I ahve them once or twice a day, and then I will go
several days without any. Is this typical? I have found that caffine, chocolate and not
eating on a schedule can bring on the headaches. I used to get them when I had alcohol,
but I don't drink anymore at all. Is this also typical? Thanks!
Peter Silvern <SSILV48821@aol.com>
Ottawa, Il USA
Friday, February 19, 1999 at 04:57:22 (EST)
I hope you guys can help! I have been diagnosed with migraine headaches and am on
medication to treat them for the past couple of years. Lately (over the past few months)
my headaches have been different and more painful. They seem to start in my temple and get
to the point where I feel sick, my vision gets impaired, I can't drive due to lights head
lights or sun light,I wake up at night due to my headaches, and my medication isn't
working any more. I take Ultram 50mg or Fiorinal. Can someone please let me know if these
are classic signs of cluster headaches or if I just need stronger migraine medications.
Robyn Terpstra <terpstra@alink.com>
Racine, WI USA
Thursday, February 18, 1999 at 16:26:44 (EST)
I first started getting CHs after I had my wisdom teeth removed. That was 4 years
ago and I thought they wouldnt return but they are back and worse than ever. Going strong
for the past two weeks with 3-4 a day. I am on Verapamil but it doesnt seem to do the
trick. I just hope I can hold out until I see the neuro. I feel all of your pain and wish
you all of the best.
Chad Cockrum <pcm6191@unix.tamu.edu>
College Station, TX USA
Thursday, February 18, 1999 at 16:17:05 (EST)
I'm only 6 and I've been suffering from cluster headaches for 15 months.
Helen Pierpoint <Pierpoint@Hangman89.freeserve.co.uk>
London, UK
Thursday, February 18, 1999 at 14:06:36 (EST)
This is my first visit to this site and I am looking forward to exchanging ideas
with all of you. I'm currently in my fifth week of a cluster that gives me 2-3 headaches a
day with no end in sight. Went to a neurologist and was prescribed Calan to be taken 2X
daily for two weeks. Two new drugs have helped me at the onset of a headache. Maxalt and
Amerge. Amerge works best, but its approx $13 a dose. That gets expensive when you take up
to three a day.
Dave <dmlabs@iquest.net>
Indianapolis, IN USA
Thursday, February 18, 1999 at 08:17:24 (EST)
I am a long time sufferer of cluster headaches. The only relief I have found is
sancert (2mg). However I have to go off the sancert every 6 months for at least a month.
During that month the headaches return with a vengence.
Gordon Hazell <bonanza@sinbad.net>
Anchorage, AK USA
Wednesday, February 17, 1999 at 21:30:58 (EST)
I wish EVERYONE a ch-less day, week, month, year, life! I have been suffering with
this sixteen years. (Hazel on the outside, brown on the inside). Imitrix is available by
shot (Never tried it, Yea, right...DRIVE? to the doctors office for it?), 9 pill
box,$147.00 (I break the fifty mg in two to make the nine I'm allowed last longer, Health
Central HMO thinks these go by some formula, so I only NEED 9 a month...jerks) and one
dose 25 mg nasal sprays, six to a box $127.00 (more jerks for charging so much, that
people who can't afford it suffer needlessly. I take an "e" tank of oxygen
everywhere I go when I have these bouts (about 10 to 20 tanks an eppisode, $27.00 a tank
(not so big a jerk as the Imitrex dealer). I have noticed that the oxygen, if used within
the first minutes of "the feeling", it will not get severe and go away quickly
(10-15 minutes). Imitrex makes them go away in the same amount of time, but with some
severity. The two together seem to make them almost seem pleasurable (we all know what a
pleasure a quick and not severe eppisode can be). I just started this combination 2 years
ago. Prior to this it was oxygen and all kinds of drugs that just did not work. Laying
down, trying to stay calm, have someone massaging the back of the neck, and sucking oxygen
was what I had for the first 14 years. I hope I was able to help someone and good luck to
all!
Joe Ordo <JoeOrdog@aol.com>
Carlisle, PA USA
Wednesday, February 17, 1999 at 21:29:56 (EST)
Hello I have just found this web site.Sorry their are so many people like me. But
glad to find out so much info. I have had CH for 22 years.I have tryed most everything I
have seen and heard.Looking for someone close to my area with the same problem to share
places or doctors to go to. Please Email if there is.
Terrill Surgeon <tsurgeon@simplix.com>
Windsor, NC USA
Wednesday, February 17, 1999 at 19:53:05 (EST)
I am 33 and have suffered from clusters since high school. It is SO comforting to
know that I am not alone in this. I used to think that Imitrex was the "cure
all" for this, but now it doesn't seem to last very long. My doctor gave me a new
drug called Amerge. It seems to last a lot longer (24 hours and counting!), but the only
drawback is that it is a pill, so you have to deal with 30 minutes of agony before it
kicks in. My heart goes out to all of you who have to deal with the hell that is cluster
headaches.
Phil Sorg <philip_sorg@beechwood.com>
Flemington, NJ USA
Wednesday, February 17, 1999 at 14:14:56 (EST)
Nice to find this site. I've been living with clusters since childhood. Praise God,
I've been off cycle for nearly a year. But you all know that fear -- wondering when they
will come back. The oxygen tank is ready to provide a little relief, but I can only hope
and pray that this respite continues... Thanks for the site. I look forward to exploring
more and learning from others here.
Jeff
Atlanta, GA USA
Wednesday, February 17, 1999 at 01:32:31 (EST)
Max again. Forgot to say, I have grey eyes with blue and brown flecks. Don't know if
that is relevent or not.
max <devynethang@yahoo.com>
dunkirk, USA
Tuesday, February 16, 1999 at 19:23:54 (EST)
My name is Max. I am curently suffering from a CH episode. My poor mother and I
spent last night in the ER. What tonight will bring God only knows. I'm afraid to sleep. I
know that when I do it will start again. I know you can all relate. Fear of sleep, when
you wake up to sit by the comode and **pray** to vomit. If they don't stop at least the
vomiting will destract me for a moment. Crawl on the floor, weeping like a baby. If this
is what my life must be like I'd just as soon not bother. Knock me out and just let me
vegitate Reading other posts, my heart goes out to all of you. I have been there. I will
without a doubt be there again... maybe in the next few hours. Pray for me. light a candle
or shake a Mo-Jo whatever. I'll take ANY good will I can get.
Max Pauley <devynethang@yahoo.com>
Dunkirk, OH USA
Tuesday, February 16, 1999 at 19:13:58 (EST)
I have never met, nor have I spoken with anyone who has clusters. Boy, am I excited
that there are others who understand. I was beginning to think it was all in my head
(literally). I began this journey 20 years ago. I will have the chs for 3 months 3X/day. I
will then be in remission for 13 months. I dont feel as though I need to get into any gory
details, because after reading about alot of your journeys, I know that you can relate. I
am currently on my 2nd day of normality. Wouldn't you know it, right after I paid $98 for
two Imitrex injections. I feel for all and everyone who is struck down with this disease.
I wish i could take your pain away! God Bless You!!
Kelly Geehan <kpgeeha@ilstu.edu>
Normal, IL USA
Tuesday, February 16, 1999 at 14:38:59 (EST)
I have been suffering since 1976 with ch's. I hope I can get some answers regarding
new treatments. I have been using sansert but side effects are starting to occur.
bill robey <rad_dad99@hotmail.com>
las vegas, nv USA
Monday, February 15, 1999 at 22:45:11 (EST)
I just started with the cluster headaches about 2and half yrs ago, please let me
know how to get through the pain and what to take . thank you
MICHAEL DIFILIPPO <MDFLIP@CENTURYINTER.NET>
OH USA
Monday, February 15, 1999 at 20:35:42 (EST)
Hey ! I made an entry a couple of weeks ago but read all of the new daily entries
and I too have hazel eyes !!!. I also have some brown specks in one of them. One of them
is a little more blue and the other, a little more green. Maybe there is a connection.
Also, I´ve been reading some comments and questions about the IMITREX sinus spray and in
response I would like to say that my personal experience was that the spray was not strong
enough and did not have any where near the results of the injection. I´m going on week
#3. I get tears in my eyes when I read this page, I guess it´s nice to know I´m not
alone but really hurts that so many other poeple are out there suffering as much as I. My
heart goes out to you all. TIM
TIMOTHY WILLING <MILLERPK@VIANET.COM.MX>
GUADALAJARA, JAL MEXICO
Monday, February 15, 1999 at 14:13:40 (EST)
Well I have been pain free for 26 hrs. After 8 straight weeks I'm praying that this
episode is over. I really need to know is it that all of you cope with this while
maintaining a job. It really kept me away for some time. I can't afford this. Is Imitrex
the nasal spray a fast solution. Please respond. Nervously awaiting the next episode.
Lorne Istre <panam@worldnetla.net>
New Llano, La USA
Monday, February 15, 1999 at 11:23:39 (EST)
37 yrs old. Clusters since 14 yrs. What to do when your doctors ceases treating you?
Larry Baggett <lbaggett@yahoo.com>
WOLFE CITY, TX USA
Monday, February 15, 1999 at 09:20:56 (EST)
My husband is beginning his bout this year on Valentines Day. The last time he had
them 2 years ago, they stopped one week before our wedding. Here they are again. Any new
medications?
Lana Metheny <lanametheny@home.com>
Arlington, TX USA
Sunday, February 14, 1999 at 22:37:57 (EST)
Hi again!! It is Mardi Gras time down here, with lots of parades, floats and people
scurrying for beads. Also has been a change in the weather, turning colder from 70's to
40's with a high pressure system. Another cluster period has started. I am interested in
the hazel eye theory. Although mine are green, I guess you could say there are specs of
brown if you look close enough. I wonder if two cluster sufferers (of opposite sex) with
hazel eyes have ever gotten together to share stories, become intimate, given birth to a
non-hazel eyed child that does still suffer from the cluster headache. That is all very
possible, however unlikely it would seem. Genetic studies are very involved and extremely
hard to understand. It is possible that we all carry some unidentified gene. It is
encouraging to hear that other sufferers are trying to figure this monster out. Like I
have previously stated, it will probably be one of us that finally puts our finger on the
missing piece of the puzzle. Keep up the great work, and let us help each other solve this
mystery.
Reece
Lafayette, La USA
Sunday, February 14, 1999 at 19:25:29 (EST)
My boyfriend has had cluster headaches for 11 years now. he is 43. the only thing
that helps at certain times is a moist microwavable neck pad that he puts on his head. got
it in a medical supply store. helps him to breath better and relieves that swollen eye for
the after pain. also breathing in hot tea vapors in a cup through his nose. also a light
back or arm scratch or rub helps him to concentrate on relaxing than the cluster headache.
sometimes these little things help and sometimes when the headaches are the worst they
don't. all i know is that he says i love my pad and those little things i do during his
attack do make it easier to go through the cluster headaches. the pad cost 25.00 dollars.
hope this can help someone. praying helps too, not only for a cure or relief but to help
us deal with the pain,anger,stress,helplessness we feel,for both of us the victum of the
cluster headaches and the family.
rosemary warner <dlpecoraro@snet.net>
east lyme, ct USA
Sunday, February 14, 1999 at 17:12:28 (EST)
Where is the cheapest place to buy Imitrex. I pay 102.00 $ canadian for 6.( 100 mg )
With the US exchange mabey we are the cheapest.
Ray Brown <brownr@camerondiv.com>
edmonton, alberts can
Sunday, February 14, 1999 at 15:08:29 (EST)
I just had the best 4 years of my life since I was 15. I am 36 and they just came
back two weeks ago with a serios vengance like I did somthing wrong. Remember to stay
positive ( not a joke ) you are getting older and someday they might just be gone for
good. When the headaches relapse and come back they always seem to be worse. Does anyone
know why.... I am up to 5 attacks a day when I used to only have the priviladge of one or
two. Lucky me eh. Anyway y"all have a safe and cluster free day. I am going tp pop an
imitrex and try snowboarding this afternoon with my kids.
RAY BROWN <BROWNR@CAMERONDIV.COM>
EDMONTON, ALBERTS USA
Sunday, February 14, 1999 at 15:01:11 (EST)
I've been a CCH sufferer for 6 years now, with no periods of remission. Never
thought I'd find anyone else who has gone through the same pain until I found this site!
I'm 46 years old,and a cop. I guess that's the worst way to have Clusters, when your armed
and in pain that would flatten almost anyone! After experiencing these, I have to say that
the people who have CH's have to have the greatest internal fortitude and humor in the
world. Who else could go through what we go through on a daily basis and keep going? By
the way, I've read some of the other comments, and my eyes are blue-green, not hazel. The
only way that I've been able to keep going is by daily doses of Ercaf and the occasional
injection of Imitrex. (My new Neurologist was horrified when he learned I was taking Ercaf
and Imitrex at the same time - "Good God, you can't do that!!" - "I have
doc, and have been for the last 5 years! Got any better ideas?") We're going to try
Lithium next, see if that does any good. Anyway, I'm on the net if anyone wants to get in
touch. Glad to find all of you, Stay happy and out of pain!!!!!
Verne W. Miller <VWMiller@AOL.com>
Chicago, IL USA
Sunday, February 14, 1999 at 14:01:15 (EST)
The pain has gotten so intense at times that I've actually considered putting an end
to all pain. I am afraid of evening, I'm afraid to go to sleep. When the pain is so severe
the only thing I can hold on to is the thought of what life is like without them and my
family suffers with me thru theses. Help me, Please
Robert Struse <coolbean@goodnet.co,>
Peoria, AZ USA
Sunday, February 14, 1999 at 06:58:05 (EST)
clusters are horrid....i would not wish them on anyone
rich carr <pink82>
columbia, pa USA
Sunday, February 14, 1999 at 04:27:06 (EST)
Hi to all! Been a sufferer for at least a year now. Doctors have tried everything
from Depakot, predisone, oxygen,midchlor,migraial and stadol. Been to ER I can't tell you
haow many time thisa pass year. Only to get a sot of stadol but no persription to keep at
home. Go figure. Anybody have a suggestion, would love to hear from you Bill
William G.Elliott Jr. <wgellio@vm.sc.edu>
Spartanburg, SC USA
Sunday, February 14, 1999 at 00:05:36 (EST)
Me again.....sorry to keep harping on this subject, but it's got me thinking. Please
email if you or someone you know has CH and also has Hazel eyes. This includes green eyes
with brown spots as well as brown eyes with green spots. I describe my eyes as Hazel only
because they change colors between Green & Brown and have no set pattern to which
color they are. Maybe the "trigger" that's making my eyes change color is also
making the CH's come and go??? Thanx for your help.
Kyle Denman <denmake@netscope.net>
Cedar Bluff, VA USA
Sunday, February 14, 1999 at 00:01:54 (EST)
I was reading the entries and noticed that several people were talking about
"Hazel" colored eyes. Mine are hazel, is there or has something new been
discovered in this area. Would like to here from someone who might know. Thanks
Joel <j.s.bowden@worldnet.att.net>
Hampton, VA USA
Saturday, February 13, 1999 at 22:15:27 (EST)
I was reading the entries and noticed that several people were talking about
"Hazel" colored eyes. Mine are hazel, is there or has something new been
discovered in this area. Would like to here from someone who might know. Thanks
Joel <j.s.bowden@worldnet.att.net>
Hampton, VA USA
Saturday, February 13, 1999 at 22:15:19 (EST)
Finally able to look at the computer monitor again to come and read up on any new
ideas. Just got over another attack that lasted the last couple of days. Sad to see so
many new entry's since the last time I was here. Just thought I would say good luck to
everyone and GodBless. Take Care.
Joel <j.s.bowden@worldnet.att.net>
Hampton, va USA
Saturday, February 13, 1999 at 22:10:05 (EST)
Finally able to look at the computer monitor again to come and read up on any new
ideas. Just got over another attack that lasted the last couple of days. Sad to see so
many new entry's since the last time I was here. Just thought I would say good luck to
everyone and GodBless. Take Care.
Joel <j.s.bowden@worldnet.att.net>
Hampton, va USA
Saturday, February 13, 1999 at 22:09:55 (EST)
Finally able to look at the computer monitor again to come and read up on any new
ideas. Just got over another attack that lasted the last couple of days. Sad to see so
many new entry's since the last time I was here. Just thought I would say good luck to
everyone and GodBless. Take Care.
Joel <j.s.bowden@worldnet.att.net>
Hampton, va USA
Saturday, February 13, 1999 at 22:09:41 (EST)
I've already told my account......but I just wanted to state that I also have Hazel
eyes.??? Is there a connection??
Kyle Denman <denmake>
Cedar Bluff, VA USA
Saturday, February 13, 1999 at 21:59:37 (EST)
Just added something, but one other thing. I too have hazel eyes. What does this
mean? Is there a connection?
Joe Ovey <jovey@uos.de>
Osnabrück, Germany
Saturday, February 13, 1999 at 19:34:02 (EST)
I found this page today when I was looking for resources on Clusters. I've been
suffering now for about 7 years (I'm 27) and normally get attacks between February and
April. The pain is behind my left eye, and never goes on to the right. I could feel that
the time was coming at the start of the week, and they started on Thursday when I was on a
plane and my Sumatriptan nasal spray was in the crago hold in my suitcase. The pain is of
course unbearable, but at altitude it seems even worse, and I couldn't walk around, I had
to stay in my seat as we had started our descent. I normally try to lie down but can't. I
have to run around and hit things. I thought this was abnormal till I read the other
comments here. It's so good to know that I have now found a site that is totally devoted
to Clusters. Will be going to my neurologist first thing on Monday to see about Oxygen
treatment. Does anyone have good experiences with this? Thanks for the site!
Joe Ovey <jovey@uos.de>
Osnabrück, Britisch living in Germany
Saturday, February 13, 1999 at 19:30:13 (EST)
This is so wonderful. The web site that is. No One will ever understand the pain od
a cluster. Unless they suffer from them. I tell my husband if only he could just have one
of my clusters, just one time, only then would he understand. It wouldnt even have to be a
bad one. Just a mild one. Then maybe he would know it is just not mental. Thanks for the
info Jennifer
Jennifer Kokitka <JeN JuNe2@aol.com>
Bartlesville, OK usa
Saturday, February 13, 1999 at 16:10:42 (EST)
I am so glad that I found this web page. It is wonderful. No one will ever Know the
pain unless they actually could experience it themselves. I tell my husband if you could
only have one headace like I do and it wouldn't even have to be a bad one. Just a mild
one. If he could only expereince that, then would he understand its not just mental.
Thanks alot for the info.....Jennifer
Jennifer Kokitka <JeN JuNe2@aol.com>
Bartlesville, Ok USA
Saturday, February 13, 1999 at 16:07:49 (EST)
Tickled Pink to find this web sight. It's hard to explain how bad these Cluster
headaches are to people who don't have them. I always thought people that complained with
headaches were just wanting simpathy. Not until I was 41 did I have my first Cluster
Headache. Yes, I was a smoker. Yes, I have Hazel eyes. Yes, I am large framed, etc. The
only thing that is different is I am a woman. But the pain is just as bad. I am no 52, and
have suffered more and more each year. Even taking all the medicine that Doctors can think
of only Prednisone and Imitrex work. But both of those have a limited use. Now I am
suffering from side effects of the Prednisone. May have to have hip replacements. So I
know what everyone is going through.
Marlene Giles <mogiles@yahoo.com>
Alexandria, La USA
Saturday, February 13, 1999 at 15:28:33 (EST)
Hello, I cant believe I found this place, I am a ch suffere for about 17 years, Just
found oxygen about 2 years ago, before that, I thought I was cursed by God ! thanks for
bein here !
Joe Louis <Joe@Rworld.com>
Rockford, IL USA
Saturday, February 13, 1999 at 14:19:27 (EST)
Have suffered from episodic CH for 21+ yrs. My remission periods have increased
significantly, occasionally making me think that I've licked this disorder, only to come
back to reality when the familiar ache behind my eye returns for an encore. Have been in
my current episode approximately 4 weeks now, constantly praying that it will cease soon.
First time to this site and have been somewhat educated. Didn't expect a miracle cure, but
hoped just the same for some glimmer of hope. Lord help us all...
Neil Pederson <npederson@worldnet.att.net>
Denver, CO USA
Saturday, February 13, 1999 at 09:32:10 (EST)
Have suffered from episodic CH for 21+ yrs. My remission periods have increased
significantly, occasionall making me think that I've licked this disorder, only to come
back to reality when the familiar ache behind my eye returns for an encore. Have been in
my current episode approximately 4 weeks now, constantly praying that it will cease soon.
First time to this site and have been somewhat educated. Didn't expect a miracle cure, but
hoped just the same for some glimmer of hope. Lord help us all...
Neil Pederson <npederson@worldnet.att.net>
Denver, CO USA
Saturday, February 13, 1999 at 09:31:42 (EST)
HELP! My best friend can't take it anymore. The last 7 years he has sufferd from CH
(in danish: Horton Migræne), but the last 4 month has been a nightmare for him and his
girlfriend. Everything he has tried of medical stuff (latest Imigran injekted and oxygen)
dosent help. He dosent have acces to the internet but i have prommised him that i will do
anything i can finding information and tips to help him find some kind of cure or at least
somthing that can easy his horrible pain. So if you have some helpfull information i will
bee very thankfull. (sorry for my english spelling) Michael / Denmark
Michael Grods <lfc@post4.tele.dk>
Odense, Denmark
Saturday, February 13, 1999 at 09:24:30 (EST)
Have been diagnosed with CH for about 8 years, but have had CH for 30 years. I am
currently 5-6 weeks into an episode of cluster headaches, average of 6 to 8 headaches per
24.hrs, lasting 45 min to 2.5 hrs.
Bill Britton <britton@renfrew.edu.on.ca>
Pembroke, Ont Canada
Friday, February 12, 1999 at 15:40:46 (EST)
dhe nasal spray,do this work?
manta <mop85696@mail.telepac.pt>
lisbon, portugal
Friday, February 12, 1999 at 09:45:18 (EST)
I hope to learn alot from this page....as well as pass along what I have learned.
I've been fighting cluster headaches and migrains long before I was a teenager. I can
identify with almost every type of headache pain imaginable. I have also taken, or so it
seems, every drug under the sun. I am currently taking Hydrocodone to dull the pain. I
just wish I knew of something to make them go away! (going on almost 3 weeks of constant
pain...............
Chris <lilcricket@hotmail.com>
Auburn, NE USA
Thursday, February 11, 1999 at 21:15:27 (EST)
Thanx for the GREAT website. Been a CH sufferer for 16 years and going on week 4 of
this cycle. Taking Imitrex injections to relieve the pain, but only allowed 2 shots a day.
Have to FIGHT pain the rest of the time. I have been on 50mg Nortriptyline for 5 years,
but recently have also started taking 240mg Verapamil and 40mg Propranolol. Dr. said it
would take a few days to take effect. I can only cross my fingers and hope relief will
come SOON.
Kyle Denman <denmake@netscope.net>
Cedar Bluff, VA USA
Thursday, February 11, 1999 at 21:14:01 (EST)
Our co-worker has been out of work for 8 days now. No relief is coming for him. This
is very new to him. Dr.'s just told him it was cluster headaches. He's going on his 3rd
week in pain with no relief. Wish I knew what to do to help.
Karen Taylor <karen@signcon.com>
Gastonia, NC USA
Thursday, February 11, 1999 at 14:48:44 (EST)
It's good to know I'm not alone!I have suffered from CH for 18 years. I take Calan
SR 240 three times a day to "control" them. I have 2-3 attacks every day.I have
tried all of the known medications and some that are not so known.Jogging in place and
then laying down helps some. OH THE PAIN!
Darren Floyd
Covington, GA USA
Thursday, February 11, 1999 at 14:03:11 (EST)
1PM and getting them again. Second time fighting them. The last was in 95. Thanks to
whomever for starting this page. Gave me much insit to possible pain releiving solutions.
Will this ever go away? Some helpful hints please. Got to go burry my head.
Lorne Istre <panam@worldnetla.net>
New Llano, la USA
Thursday, February 11, 1999 at 13:58:23 (EST)
I am a 54 year old female. This is my third bout with ch. As read the others
comments I feel I know these people because we share something. A horrible something. I am
using the Imitrex nasal spray but I do worry about the possible side effects. Has anyone
ever heard of the Diamond Headache Clinic in Chicago. A family friend said they had
controlled her chs. I would be willing to make the trip if it were true.
Pat Maxwell <patmax@ilnk.com>
Jacksonville, FL USA
Thursday, February 11, 1999 at 13:42:46 (EST)
First time visitor, long time sufferer. I first had CH when I was about 15. I never
really knew what the were, I just knew they were painful. My mother, who also has had
them, told me what they were and that they go in cycles. Every year since I was 15 I have
prayed that they wouldn't come back. I am now 25 and have had my third one this week. I
have all but pryed my eye out with spoons, beat my skull with a hammer and pressed every
spot on my skull and down my neck to try and fins some sort of relief when the pain comes.
Nothing ever works. I have read the information on this site, and I will be seeing a
neurologist as soon as I get medical insurance back. Yes, these headaches hit at the same
time I was downsized. It doesn't help morale much. Anyway, thank you for the wonderful
information. It at least gives me hope that there is someone(s) out there having the same
pain and feeing just as helpless.
Ben <ben@bigtubbamista.com>
Cleona, PA USA
Thursday, February 11, 1999 at 12:22:14 (EST)
New page user over 20 years with CH. and Ihave no answers. I could tell you what it
is like but you know. tomrow I see the DOC and like allways he will shrug his sholders and
say I don`t know but I am tired of that answer so it is time to turn the heat up.answers
tomrow taz
taz <tazzz@alltel.net>
greenbrier, ar USA
Wednesday, February 10, 1999 at 16:45:17 (EST)
Just got back from doctors and found out I have cluster headaches. I had never heard
of them. I copied your info. and am finding it very interesting and informative. Thanks
Joanne Nord <joni@netvista.net>
Walnut Creek, Ca USA
Wednesday, February 10, 1999 at 16:34:38 (EST)
Great site. Just nice to know there are so many others who suffer from CH. I have
been suffering for the past 16 years. I do forget to really enjoy the times inbetween the
headache sessions. Unfortunately, they are back after an 18 month break.
Harrell Wittenstein <hwnod@aol.com>
Evanston, IL USA
Wednesday, February 10, 1999 at 15:29:11 (EST)
This pain is really fantastic!!! I wish that there was something that I could take
that would just make it quit all together, RIGHT NOW!!! Thanks for the info., I'll read it
in the morning if my head stops hurting long enough!!!
A. Storm Beck <abeck@ctaz.com>
Kingman, Az USA
Wednesday, February 10, 1999 at 02:36:15 (EST)
2/9/99 Started haveing CHs in 6/98 and its been almost everynight since then. Only a
few good nights here and there and when the Dr. had me on some steroids. Have been using
Imitrex and O2. Can tell from this site my pain isn't as bad as some peoples so for the
first time I almost feel lucky.
LarryM
USA
Tuesday, February 09, 1999 at 21:02:13 (EST)
Hi, I've been suffering from what is known as cluster headaches for the last 25
years. I went the complete medical route, rit up to holistic healing, and haven't found
much help. I currently take, and have been taking 360 mg. of verapamil a day combined with
3 wigraine tablets and 6 aspirin. This seems to give me some relief during the downtime of
headaches. The headaches occur mostly in the middle of the night during a dead-sound
sleep---I'm up with a shot. I go downstairs and take one wigraine tablet two aspirins and
I make myself a cup of instant coffee. I have to concentrate on my breathing so that it
stays regulated and keeps my heart from racing. The coffee and pills will usually break
the headache and I am able to return to bed usually for the night. During the headache, it
feels like my body temperature rises 30 degrees. I can be dripping wet even on a winter
night. When the headache breaks, I get cold to the point I have to cover myself with a
blanket. This will break the usual weekly headache. When they come in packs, I haven't
found anything much that helps. During December I had a bout of the flu, compiled with a
cluster of headaches. I sat straight up on the couch, my only recourse for three days. The
headaches would last from one to two hours but would come back every three or four hours.
I went to see a sinus doctor who scoped my nose and throat. As soon as he inserted the
scope into my nose, the headache began to break. When the scope is inserted into your
nose, it exits through a flap in the back of the roof of your mouth. This seemed to start
the post nasal drip running and the headache was gone. He put me on an antibiotic called
Biaxin. I've been headache free, or pretty much so, since then. If anyone has had this
scoping of your nose and throat done, I would like to know if you've had any luck with it.
I think that people who suffer from cluster headaches have a chronic sinus condition 300
days out of the year that never goes away. During the other 60 days the sinuses become
infected, it seems to kick off the cycle of headaches. That scope seemed to work so
effectively, I wanted to steal it out of the doctors office. If anyone has any comments,
please get back to me. Thanks.
Vin <vacono@msn.com>
Brooklyn, NY USA
Tuesday, February 09, 1999 at 17:49:34 (EST)
Hello ! I had no idea Ihad so much company. In one way Iam excited and in another I
am very distressed after reading all of comments, most of them identical to my own
affliction, with little or no aggressive medical research to address our living nightmares
and literally HELLISH episodes. My attacks are similar, extreme pain manifesting in my
right eye, partial paralysis in the right side of face, loss of vision in the right eye
and the uncontrolable moaning, screaming and rocking and rolling around the floor. I
started with these demons around five or six years ago. I am now 43. They cluster without
warning around three or four times per year and then sometimes there is the occasional
wild one that follows no pattern and does not repeat as if a reminder not to ever forget
my medication. No matter where I go or what I do my medical kit is always at my side. I
have narrowed down the array of medications to three. One correlation that I have noticed
in all comments is some kind of relationship with sinus. As with me the first sign is
usually some kind of twinge around my right eye and close to my nose, in the sinus area.
If I administer a dosaage of AFRIN sinus spray sometimes this prevents the full attack. If
the episode persists I can usually tell the severity at the onset. If It feels like a mild
one I will take two capsules of MIDRIN and that usually works. If not and I have either
misjudged or the attack builds I can take an injection of IMITREX. If the attack starts
out like gangbusters I skip the first two steps go straight to the IMITREX. I feel very
uncomfortable even having to devise a plan like this which has become a matter of my
survival. I am glad that I have found this sight. maybe we can find strength in numbers ??
I am origanally from Rochester NY and now temp. reside in Mexico. I began clustering about
five days ago. Thank God IMITREX is available here and at a greatly reduced cost than the
US. My injections here cost $ 18.00 usd. Compared to $56.00 in upstate NY for the exact
same thing. Damn the pharmaceutical companies. Thanks for listening TIM
TIMOTHY WILLING <MILLERPK@VIANET.COM.MX>
GUADALAJARA, JAL MEXICO
Tuesday, February 09, 1999 at 13:39:14 (EST)
Hello and many thanks. I have just discivered this site after 13 years of clusters.
What a relief! I had no idea there were so many medication options. CJ
Catherine Job <job.catherine@a2.abc.net.au>
Canberra, AA Australia USA
Tuesday, February 09, 1999 at 06:29:28 (EST)
Thank you all for keeping this place alive! I've had a chronical attack for 56 weeks
now, and the doctors have given up. Just on painkillers and vitamin B. This place cheers
me up though. I'm not alone. Take care, everyone, and remember that It'll pass. Someday.
Mathias Andersson <mathias.andersson@wago.de>
Helsingborg, S Sweden
Tuesday, February 09, 1999 at 04:38:29 (EST)
I am so grateful to have found this site!!! What a great relief to know that other
people reaaly do suffer from these monstrous headaches! I'm interested in finding out if
clusters have affected anyones ability to keep and maintain a job? If so, what have you
done to do the obvious...support yourself and your family? I've never been quite so
frustrated by this dilemma as I have been lately! I want to be "normal",
whatever that means!Some feedback would be appreciated!
shellie masini <shelliemasini@hotmail.com>
Mesa, AZ USA
Monday, February 08, 1999 at 21:09:08 (EST)
hey, my ch strarted around the age of 16 i've have bounds one ore two time a year, i
was free off bounds for the last 2.5 years but 2 weeks ago it was back, i'm glad that
there is a site where i can go thru so now i now i'm not the onley whan i just printet
this site and i'm going tomorrow to my docter so he can read al this stuff and giff my one
off the drugs that can help thanks for making this site and see ore read you later i'm 25
male from belgium
Van Mierlo Piet <Gust.Van.Mierlo@village.uunet.be>
Zoersel, Avtwerp Belgium
Monday, February 08, 1999 at 16:35:31 (EST)
I am a 22 year old student who thought nobody truly knew what it was like to suffer
from Cluster Headaches. After visiting this site I now feel a little better knowing that I
am not alone. Keep up the good work.
Reggie Jeffries <saucebag@aol.com>
Shamong, NJ USA
Monday, February 08, 1999 at 15:27:04 (EST)
i have had these damn yhings for about 10 years now the first time i had one i
thought i was going blind i couldn't see out of my left eye saw a optomotrist he sent me
to a regular doctor. they went away after 2 weeks. three years later in the dead of night
it was like my head was on fire, never been so damn helpless and my wife couldn't help hot
compress's baths dark rooms all that stuff nothing pills but god they take so long to kill
the pain have thought many times of putting a bullet in my head then the pain would go
away had one at work a day or so ago not sure haven't slept think i scared the hell out of
my boss god i am terrified of having one and driving gotta lie down thanks for hearing me
jim freeman <thelamb@icrossroads.com>
edmonton, ab Canada
Monday, February 08, 1999 at 00:05:28 (EST)
Glad to see this website. I've using Immitrex 50mg tablets and the injectors. The
tablets give relief in about 30 mins and last longer than the injectors. I only use the
injectors when the pain is unbearable and I can't wait for the tablets to kick in. The
injectors don't last as long either. Will be coming to the scheduled chats in the future.
Thanks for the website.
Ben S. <bselvidge@jccomp.com>
Fairfield, ca USA
Sunday, February 07, 1999 at 23:41:26 (EST)
What a relief.......to finally discover that I'm not alone and NOT crazy! I've been
a CH sufferer since age 16..I'm now 31. I've lived in several locations across the US due
to school and job and have literally been tested like a lab-rat with no hope for a cure. I
think i've been to every specialists known to mankind. Not until last Thurday 2-4-99 did I
learn about the WONDER DRUG Imitrex. Finally a way to escape the twice a year
"needle-in/behind/thru/around-the-eye", "can't get it to stop",
"no matter what I do pain". I've been suffering from my current cluster for 3
weeks now....and if it is like the past 15 years, i've got another week of HELL to deal
with....then 6-8 months of relief. I'm so happy to have found this website..it will be a
place for me to visit regularly to offer support toward my fellow CH sufferers. If we
stick together we will WIN THIS WAR....
Kyle
USA
Sunday, February 07, 1999 at 23:19:30 (EST)
I have been dealing with cluster headaches for over 15 years but it was not until
about 2 years ago that I ran into a doctor that knew what they were. Up until then I have
been diognosed with everything from offset mandable joint, to nasal problems, to facial
nerve problems, to dental problems. I had my teeth ground down to improve the bite, I had
a doctor that wanted to remove a facial nerve, I had a doctor that wanted to operate on my
jaw, and for 12 years I kept getting doctors and specialists that were sure they knew what
I had and knew what I needed to do. I didn't believe any of them and continued to suffer
until finally I ran into a doctor at Kaiser Permanente here in Fremont in the neurology
department. He told me that I had cluster headaches. I had suffered for 12 years and seen
12 to 15 doctors during that time and had been misdiagnosed by all of them. 12 years of
god awful suffering and not even knowing what you have or if you are the only one that has
the problem is the real torture. Know that I could give a name to these rotten headaches
and knowing that I was not alone eased to pain a great deal. The Kaiser doctor prescibed
Methysergide and it seemed to help sometimes but I was concerned about taking the drug for
long periods. Now I have a computer and I am on the internet, and I have found this site.
I am elated and will now have some other options for treating this horrible affliction. LW
Larry Wilson <lw61149@aol.com>
Fremont, CA USA
Sunday, February 07, 1999 at 22:00:14 (EST)
i have suffered from ch for 4 years now.thats 4 years straight with no cycle
breakage,but i finally found a doc that could help.seems i was always taking the right
drugs but they were not the right doses.i take 720 mg.a day of verapamil short term, which
took my headaches from 2-3 a day to 1 a week and when i feel a headache comming on i take
a shot of IMETREX and within 1-2 min. the headache is completly gone. its a dream come
true.i hope this gives some hope to all who suffer from ch.
roy <roy-mair@worldnet.att.net>
phila., pa. USA
Sunday, February 07, 1999 at 20:41:38 (EST)
I have just recently joined the online group and decided to type in cluster
headaches to see what came up. I have been suffering for as long as I can remember. There
is no set pattern that I can see. I never know when they will strike I just lived through
another episode which started Friday night midnight. I am glad I have found others who are
going through the same hell. But also saddened that there are so many others suffering.
Joel Bowden
USA
Sunday, February 07, 1999 at 14:55:05 (EST)
Hello my fellow suffers. My CH cycles occur about once/year and last 2-3 weeks. For
YEARS (15+)I would have sworn they were sinus related. I could take Allerest or other OTC
drugs containing Ephidrine HCI as a preventative. Last year a neurologist convinced me
though. Just last week I tried Imitrex for the first time. An absolute blessing. Its the
first treatment thats worked (from 5 - 30 mins). Its like the spike being twisted around
in my eye socket is removed. Hang in there folks and my prayers go out for you. It saddens
me that other people are experiencing this torture too. BTW I am a 40 yr old male.
Mike <kopp@radix.net>
MD USA
Sunday, February 07, 1999 at 13:47:15 (EST)
I just found this site. I have been a "Cluster Headache Sufferer" since my
early teens. I will soon be 45 years old. I was always treated for sinus infections as a
child. If seems my bouts with these monsters happen every 5 years. My doctor linked my ch
to hormone changes since they seem to have started about the time of puberty. I have been
on "Hormone Replacement Therapy" since my last bout with ch. What I found
interesting when reading through the message board was the similarities we all have, such
as: floaters, droopy eye, high eye pressure. I would like to hear from women sufferers
since my doctor thinks mine may be hormone related. I am getting a little nervous since it
will be 5 years since my last episode in March. Good luck to all you ch sufferers. Brenda
Brenda <willi044@aol.com>
USA
Sunday, February 07, 1999 at 10:47:09 (EST)
My husband has suffered clusters for over 20 years. It's very interesting to read
all the comments on your site and am thankful to have this resource. My sympathy goes out
to all CH sufferers as I've seen how excruciating they are and how they affect lives. I
hope you don't mind the wife of a sufferer dropping by!
Rose Kovaskitz <rkovaskitz@worldnet.att.net>
Rockvale, TN USA
Sunday, February 07, 1999 at 10:40:34 (EST)
Imitrex injectors have been the fastest stoppers I've used -- 4 to 6 minutes. But
the doctor and the label warn against taking more than 3 per week. But when all the
preventatives -- Valium, O2, Sansert, Lithium -- fail, the temptation to use the Imitrex
injector/tablet/inhaler is irresistable. I don't have the courage to wait out a two-hour
attack when I know relief is just minutes away, even if I've used my weekly quota of
Imitrex. What to do? During my last session of headaches a couple years ago, 5mg of Valium
worked like magic. This time around, it is nearly useless. The doctor substituted 1mg
Ativan/Lorazepam tablets and they are fairly useless also. In the past, codeine and
Demerol have proved worse than useless. Any suggestions? This is the third time I've tried
posting this message. With no sleep and a splitting head, I'm having trouble figuring out
how to get my message up on the board. Forgive me if I'm repeating myself.
rick <rickval@fidnet.com>
rolla, mo USA
Sunday, February 07, 1999 at 08:52:18 (EST)
I have had cha for sometime. I noticed that tylenol sinus to have worked the best
along with a continuos exercise until the cluster is gone. This is from 16 years
experience. I feel for anyone with the same problem as it is like being tortured. When I
was younger with them I was unaccustomed to the extreme pain and I had feelings of
permament solutions when attacked. Try every solution you can , I believe that this
ailment is environmental . I believe that there is a trigger from a source whether its
artificial light or dust I don't know .
george
brockville, canada
Sunday, February 07, 1999 at 00:00:20 (EST)
Well, back again. Do any of my fellow sufferers know what else Verapamil is used to
treat? High blood pressure. Have any of you ever taken your blood pressure while having an
attack? I have, and let me tell you what the doctor said; "You better lie down
because you are fixing to explode." It was something like 210 over 150!!! What part
of the body regulates blood pressure? Maybe we have a faulty hypothalamus or whatever it
is. Have any of you had an unexplained high fever as a child? A virus like encephalitis?
Just wondering. Check out your blood pressure resting without a headache, and then check
it while your having a bad one. Elevated?? Hope everyone has a painfree night tonight.
Good luck.
Reece
Lafayette, La USA
Saturday, February 06, 1999 at 21:24:51 (EST)
I have experienced cluster headaches for only 2 weeks and do not enjoy it at all. I
have recently had an mri and am scheduled to have an eeg on Monday. It seems like my
doctor has and idea of what they are. I am not certain if I should tell him about the info
I have found here. How do I suggest some of the treatments that are here if he does not?
Mike Sibbald <mcsibb@frii.com>
Ft. Collins, CO USA
Saturday, February 06, 1999 at 19:01:24 (EST)
Hi everyone! I am 26 years old and I'm looking forward to chatting with other
cluster sufferers close to my age. I have 2 young children and find it almost impossible
to look after them when my clusters start. My clusters last about one hour at a time for
roughly one month a year, averaging 4-6 clusters a day. The most severe hitting me at
night about one hour after I have falling asleep.
Lee <montanasky33@hotmail.com>
Parksville, B.C. Canada
Friday, February 05, 1999 at 20:11:01 (EST)
Hello ch's suffer my wife and myself are tring to start a group to help the
Insurance co. and public understand what we're going though and i just gotten over my
attack. thanks be to god, but i need to know if their is anyone willing to v.tape their
attack. So that if we get are chance for a take show we'll be ready. Because i'm working
hard at getting someone out there to help us fight this monter. Let me know if you can
help. thank you. and god bless.
Linn w. Mosley sr. <www.babywhoopi.com >
Harrisburg, Pa USA
Friday, February 05, 1999 at 19:44:21 (EST)
Hello fellow sufferers Its been called migraine/headache and hortons and cluster
headaches in my case - which ever it is - the name isnt important - the cure is - and
there isnt one. The cycle is between 12-18 months (Started when I was about 25 - 49 now)
duration about 1 month - always starts at nite at about 10.00 and lasts until 03.00 -
naturally lying awake with excruciating pain. Eyes crying - nose burning - left temple
being crushed by a jackhammer from the inside - left eye being poked out by red hot
needles. Read somewhere that it all goes away when you are 60 - and that more men suffer
than women - who can tell me why that is. Can this symptom cause medical damage (to brain
eyes or whatever) - tried all the regular medines available - none have helped - except a
huge valium dose that practically knocks me out - wake up feeling as though I have been
beaten up around the head. Are there any medical doctors out there who have these
"migraines" - mine says he knows what its like - but thats impossible - if you
have not experienced it - you cannot know what it is like - all too frequently you are
looked upon as just a complainer - ABH (just Another Bloody Headache) thanks for the
opportunity to voice my self Thom
thom smith <thsths@yahoo.com>
rotterdam, netherlands
Friday, February 05, 1999 at 06:11:29 (EST)
My husband Tim suffers from clusters. I have been going to the internet for year
during his cycles to see if any miracle cures have happened since the last cycle. No new
medicines but sure a lot of people that are affected by this terrible thing~
Sherry Sopoci <VACTS @ AOL.COM>
Roselle, IL USA
Thursday, February 04, 1999 at 22:16:45 (EST)
well i come here from time to time. I have been headache free since last june..they
seem be running a feb thru may format lately...started getting little headaches in the
last week. This morning got a little cluster..a little droop eye,stuffy nose and
paim..paced it off....starting my verapimil..will hold off on the sansert..see if verap
will be enough...this is the 1st time starting the meds with little headaches...i usuallly
wait until i have several full blown attacks..(denial) oh well i hope i catch it ...dread
the next 3 or 4 months if i don't...hang in there all of us..
mike <meezee@aol.com>
ny USA
Thursday, February 04, 1999 at 21:45:27 (EST)
I'm 46 and have had cluster headaches for about ten years now. There's no reason to
tell you what the pain is like, if you're reading this you already know. My headaches last
6 weeks and come on about every year to two years. Since I had a heard attack last year,
I'm not able to take imitrex any more. I'm going to try oxygen again. It's better than
giving myself a shot of demoral every three hours. Good luck to all of you. God
Bless...........
Tim <codi4@fea.net>
Lake Forest, CA USA
Thursday, February 04, 1999 at 12:29:11 (EST)
I'm a 35 year old Print shop Manager. I have taken Imitrex for the first time Jan
'99 (and it helped). I have had sinus problems for years and just now found out that most
of the problems may be Cluster Headaches. For years thinking it was part of my allergies
or sinus infections. This site will be great in helping me with my problems. Thank You!
Ron <ron@belprint.com>
Fond du Lac, WI USA
Thursday, February 04, 1999 at 09:32:29 (EST)
Hello, everyone! I finally found out that these excrutiating headaches I've had all
these years were not just "bad headaches." (And since I didn't have an aura or
get nauseated, no doctor wanted to do anything about them). I'm in the middle of a bout of
them now and just discovered this site. It seems that everyone's clusters are more
frequent or longlasting than mine....I get a few a day for a few days and then maybe none
at all for several months. Are they going to get worse? I welcome all email from folks
suffering with this. Thanks for being here- Claudia
Claudia <jjandc@together.net>
Georgia, VT USA
Thursday, February 04, 1999 at 05:29:43 (EST)
I'm a 35 year old Submarine sailor who has had cha's for close to 4 years now. They
are why I was found unfit for sea duty. Currently (as of today) I'm taking Sansert with a
Decadron kicker (for 6 days) and for those times to come I get to suck on an O2 bottle. I
have taken Imitrex in the past, in 2 different forms. Self injection is by far the fastest
for me ( 5 minutes tops and the episode is gone). As of late I have been getting tired of
becoming a pin cushion so I switched to the nasal spray. Not as quick as the injection but
a hell of a lot faster than the pill. The only drawback with the nasal spray is the
aftertaste. Yuck!! I'm looking forward to reading the entries left by others and learning
perhaps what the root cause of cha's are. Chow
Ron <fivesubs@hotmail.com>
Ledyard, CT USA
Wednesday, February 03, 1999 at 22:46:11 (EST)
my name is johnny.i am 46 years old and have had these headaches for twenty years
now. nobody that doesn't have them understands....but you all dont need me to tell you
that.i just wanted to say my heart is with you all...God help us.
johnny s. <nursek@netunlimited.net>
rural hall, nc USA
Wednesday, February 03, 1999 at 21:12:12 (EST)
i am 26 years old with young children.i suffer with clusters once a year for about
one month. i would like to chat with someone similer.
lee
parksville, b.c. canada
Wednesday, February 03, 1999 at 18:11:59 (EST)
I was just diagnosed yesterday with Cluster Headaches, which actually helped me a
great deal as I was then able to research the topic. Searching the web, I found this site.
The "About" page really made me feel a lot better and the "Home" page
with the stories of other people really helped. I am a big strong guy and thought that I
was just being a baby when these headaches struck. Crying and curling up in a ball.
Someone mentioned that their wife could not drive fast enough to the hospital, for me it
is just the opposite, I become so hypersensitive to bumps and motion that she cannot drive
slow enough for me and the 15 minute trip feels like hours.
Wayne Irwin <wayn@pangea.ca>
Winnipeg, MB Canada
Wednesday, February 03, 1999 at 10:45:43 (EST)
I would be very interested in hearing from anyone with information on cluster
headaches, even if just to commiserate. Ken
Ken <mainstbk@epix.net>
USA
Wednesday, February 03, 1999 at 10:18:45 (EST)
I have been suffering from clusters for about 20 years. They ae not chronic, but
when they com they last for weeks on end. I recently tried verapamil and have been on them
for 2 weeks with no relief in sight. Toradol takes the pain away but not for long. Any
suggestions ?
Lynn <lynn_hoffman@scotia-mcleod.com>
Toronto, Can Canada
Wednesday, February 03, 1999 at 08:28:27 (EST)
Hello!!!.....I am a 36 year old female and have suffered from clusters since age 12.
I was not diagnosed until age 24 in the spring of '87. My attacks occur every 3 years
during the spring and/or fall. I have had success in preventing headaches for the last
three episodes in '96, '93, and '90 through the use of lithium. I am due for another
attack this spring. I would prefer not to take the lithium, I hate the side effects...any
suggestions??? All info would be greatly appreciated!!!! This is a great site!!!
Yolanda Thomas <lontom1@aol.com>
Oak Park, IL USA
Tuesday, February 02, 1999 at 23:34:31 (EST)
I'm a 34 yr. old female who has been suffering clusters for 10 yrs. They decended on
me when I could not take any medications because i was pregnant. Torture!! As you all know
family and friends don't have a clue. Oh, how are your headaches? They ask like it's just
a headache! I'm sooo glad to have found this sight, I'm just sorry there are so many other
sufferers. I thought I was done with them since I was cluster free for two years. They
should have come in Nov. butdidn't. I worried every day,but nothing until I was sure they
wouldn't come; then KABLAM! Nights from Hell. Now the question is what to do to get
through. In the past I've benn given antidepressants,made me to sleepy. Prednisone only
worked for about a week and THEY were back. Indocin made me sick and did nothing for the
acute attack. Last attack I tried oxygen. It only worked sometime,but no side
effects.Luckily I have a wonderful husband who graciously kneeds my head,even in his
sleep! I also will use some type of relaxation breathing to get me through the peaks.
Mostly I do what everyone else does,pace,cry,rock,and PRAY. I'm now in my 3rd week. I just
hope it's not 5 more to go. Thankyou for this site. Would like to hear from others.
Someone asked about neck pain, I have it too. Also, be carefull of Stadol, it's addicting.
Imitrex works but limited to number of doses a day. A Pain Free Night To All
jen <jarugg@snet.net>
ct. USA
Tuesday, February 02, 1999 at 22:13:37 (EST)
Hello, I am 23 years old and have gone w/o treatment until the latest bout. Like
many of you, it had been suggested that it was probably a nerve thing-something in my
neck. After visiting the chiropractor for a couple of weeks, the headaches were as
frequent and painful as ever. I finally drove, blind in one eye, to the E.R. The nurse
attending asked me if I had been in an accident, it was 3 in the morning on a Sat night in
a small town. I guess I looked pretty scary: red faced, eye swollen shut, and walking with
a gait. I explained my headaches as quickly as I could so I could get some painkillers,
but she insisted on tests. A doctor FINALLY administered a hypo. I have since been
prescribed Imatrex nasally... Expensive. But it does make the headaches bearable. The
problem is that the insurance company will only co-pay for 12 doses of imatrex in a 34-day
period. Does anyone out there have advice in the form of insurance loop-holes or
unconventional, alternative treatments that can alleviate CH when my last imatrex is gone?
Good luck everyone. This page is of great comfort. Chuck
Chuck <ccole@itctel.com>
Brookings, SD USA
Tuesday, February 02, 1999 at 21:11:26 (EST)
I am 36 yr old female who has just found out that the headaches I have had for 20
some years are Clusters. I have been to numerous doctors and at one point they told me I
had TMJ. Well i found out different. My doctor put me on Propranolol La 80mg once in the
am, he also gave Imitrex. My headaches were gone in 3 days time. They use to last anywhere
from 2 to 6 months, so that was a relief for me. I've been reading alot of these entries
and alot of you don't seem to like to take the Imitrex, I was wondering if it was that bad
to take. Please email me if you know more about this drug. To me it was a God Send to get
rid of those headaches that fast. It is also nice to nice they have places like this to go
and read about and talk about this painful thing we all suffer from.
Kathy Wright <kwright@fascination.com>
Rock Springs, Wy USA
Tuesday, February 02, 1999 at 20:01:35 (EST)
I have been suffering from cluster headaches for four years (I'm in my early 60s)
What helps" An initial dose or prednisone, undercut with verapamil for a month. After
that, I'm on my own. Alcohol certainly triggers the headaches.
Ken <mainstbk@epix.net>
Germantown, NY USA
Tuesday, February 02, 1999 at 19:37:10 (EST)
Dear fellow CH suffers,I too suffer from ch since age 12 My parents always said I
would grow out of them, but 20years later I still have them! I found this site yesterday
eve,funny I came home from work early because of a CH attack,they've been bothering me
steady for about 3 weeks nowwith little releaf. I found that 2 nyquil gel tabs seem to
help ward off some of the ones that might be waiting for me in my sleep. I too am on the
beta blockers and zomig.if I find anything else that helps I will gladley share it with
all of you.
GARY FOWLER <nfowler@vol.com>
Dalton, GA USA
Tuesday, February 02, 1999 at 17:01:50 (EST)
thanks for helping my mother through her ch attacks . although i don't fully
understand her pain i am trying to i also suffer from headaches ,i don't know if they are
clusters but right now the left side of my face is numb and my eye hurts . that's all for
right now good luck to you all!
b henderson(son of barbara d) <slotdoc007@aol.com>
somewhere, la USA
Monday, February 01, 1999 at 23:35:26 (EST)
Great site, I will visit often for support and ideas.Good luck and strength to all
my fellow sufferers.oops,I feel one coming on,gotta go take a pill ! see you all on the
other side.
Brian Asacker <basacker@aol.com>
Boston, MA. USA
Monday, February 01, 1999 at 14:32:25 (EST)
If anyone out there knows of doctors (ANYWHERE)who specializes in CH or understands
what of horrific pain/better off dead pain PLEASE mail me. I have suffered since I was 19
(i'm now 28) and have tried about every treatment. Thanks!!!
Thomas E. Clay Jr. <tclay@aol.com>
Louisville, KY USA
Monday, February 01, 1999 at 02:10:21 (EST)
