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
I began suffering CH's in 1974. I dealt with them until 1992 without a break. 1992
is when I quite smoking cigaretts. I often wondered if I had cured myself. It wasn't to
be. In early January 1999, They started again. I dont remember them being so severe. Back
to the doctor and back on Beta Blockers. I continue to wonder if someday we will all be
able to go to bed and sleep the entire night through.
Mike T. <mftmish@worldnet.att.net>
IN USA
Sunday, January 31, 1999 at 17:10:49 (EST)
What a great site! It's great to know that there are others like me. I've been
suffering from CH for 8 years now. I usually experience an bout once or twice a year,with
a lapse of six or eight months in between. I have seen the looks on ignorant doctors faces
and have been made to feel crazy at times. But thanks to the information and letters from
people on this site, I can begin to educate myself and seek help from a professional, well
informed source. I hope, for all of our sake, that a CURE will be found soon. In the
meantime, I wish all of you the best of luck. Stay tough!
J. S. <JS3030371@aol.com>
Stratford, NJ USA
Sunday, January 31, 1999 at 16:33:35 (EST)
I am a missionary and have been suffering from chronic cluster headaches for 2
years. I have spent thousands of dollars on examinations and tests as well as trying
almost every kind of medicine available for relief. At this very moment I am masking the
pain with fiortal/fiorinal with codine. I would do anything to rid myself of this pain. I
teach at graduate school level and it is effecting my abilities to prepare and to lecture.
I just can't believe that there is nothing I CAN DO to make the pain stop. Is there anyone
who can help me?
Dr. Larry J. Waters <LJWaters@aol.com>
Manila, Philippines
Sunday, January 31, 1999 at 07:20:01 (EST)
I have been suffering CH for 22 years. Just started a new series after an 18 month
remission. It's funny how we take the remissions for granted until the onset of a new
series, then WOW it all comes flooding back. I have most of the same symtoms everyone else
has listed, but I also have a lot of neck pain. Am I the only one? I loved finding this
site. It makes it easier to know I am not alone. Let's keep our fingers crossed and maybe
someone will find the answers that we need.
Brett Hafner <BE7474@AOL.com>
FT. Worth, TX USA
Saturday, January 30, 1999 at 23:54:36 (EST)
It's been alomst 2 years of headache free living, but they're back again. I'm at
least prepared this time and can tell then the onslaught of the "biggies" will
be here. Starts with short 5 to 10 minutes bursts of pain in right temple...debilitating
totally during that period. This give me at least a few days to contact my Dr. and get my
Imitrex on hand. I've opted for the injection (cost is significantly higher, but the
clusters are gone within 4 to 5 minutes). I've been through the prednisone, verapamil and
lithium (forgive bad spelling) with no noticable change except the side effects. The
clusters have been going on for over 20 years either in 1 or 2 year cycles lasting for 1
month up to 3 months. If I can be of any help to anyone out there - drop me a line. We're
"not" alone and sometimes it's better than "beating our heads against a
wall".
Jay <jehcya@yahoo.com>
Minneapolis, MN USA
Saturday, January 30, 1999 at 22:54:30 (EST)
Hi, my name is Paul. I have just been diagnosed as suffering from "Cluster
Headaches". I have had BAD pains in my forehead now for about 2 months and it is the
worst physical pain i have ever had to put up with. My Doctor has prescribed me Prothiaden
25mg one or two a night at bed time. I have also just been prescribed glasses. Since
wearing the glasses and taking the tablets the headaches still appear each day but the
pain has subsided a little (although Still too painful). Many a time I have just sat on
the chair with tears rolling down my face in pain trying to overcome it. I hope somebody
here can give me some hope and any idea to lessen the pain or maybe suggest to my GP what
to try. Sometimes I am unable to watch telly, drive, talk, SLEEP, etc.... Somebody please
email me with some possible suggestions. Many thanks
Paul Gill <paul@one-drink.demon.co.uk>
Manchester, UK
Saturday, January 30, 1999 at 19:28:01 (EST)
Well, just by reading some of the other posts, I guess I am fairly new at this
cluster headache thing. I've only been suffering from them for about 6 or 7 years. I only
recently (about 2 years ago) realized that what I was experiencing was a cluster headache
and not a migraine. I've never been 'officially' diagnosed by a physician (I've been to
several doctors but none of them ever had a clue), but I have almost every single awful
symptom and finally understand what I have (thank goodness it's not a tumor) :-) Now,
maybe I should clue them in (it's amazing at how unkowledgable doctors are about these
headaches). Feel free to e-mail with comments or just to chat.
Tanisha Solis <nish68@yahoo.com>
Reseda, CA USA
Saturday, January 30, 1999 at 19:16:06 (EST)
Had the ch's since '91. I've been through the revolving medicines, writhing in my
car in the parking lot at work twice a day, strange looks from people (including relatives
and a spouse) that want to understand but can't, dreading going to sleep because I knew
I'd wake up in an hour with feeling like I have a knife in my eye. . . but I had no idea
so many people had the EXACT same experiences. This site is wonderful! Has anyone had luck
with NASACORT, an inhaler? My ear/nose/throat doctore put me on it a couple years ago, and
I haven't had a bout since. . . until last Thursday, when it all started again. . . Fight
back! It's like Nightmare on Elm Street. Nobody believes Freddy is after you, if they did
they couldn't help you anyway. As Andrea's post pointed out, anger can "muscle"
you through for a while. If you're having one, I'm probably having one also - and I'll be
damned if I'll let it take over my life!
Tom DiBella <dibella@iquest.net>
Indianapolis, IN USA
Saturday, January 30, 1999 at 16:34:47 (EST)
Thanks for being here, wish I could have found this sort of info and support 23
years ago when they started. Good luck to all of us!!
douglas wright <dwright@nanaimo.ark.com>
nanaimo, bc canada
Saturday, January 30, 1999 at 02:24:00 (EST)
I have suffered from Clusters for 18 years. I only get them for 10 - 12 days every
18 month to two years, so I guess I am one of the lucky sufferers (although it doesn't
feel like it). I am very happy to have found this site
Toni Cisco <ciscot@ca.ibm.com>
Calgary, AB Canada
Thursday, January 28, 1999 at 14:46:24 (EST)
Have had clusters for 9 years now...feels like I`ve tried everything...exept Imitrex
( maybe in my country Imigran?) But Litium, calsiumblockers, nozinan, oxygen and
sleepingpills at the same time did get me some relief..For suggestions or
comments/questions...please mail me!!
Petter Vikeby <vikeby@online.no>
N-3727 Skien, Norway
Thursday, January 28, 1999 at 09:24:57 (EST)
Have had clusters for 9 years now...feels like I`ve tried everything...exept Imitrex
( maybe in my country Imigran?) But Litium, calsiumblockers, nozinan, oxygen and
sleepingpills at the same time did get me somerelief..For suggestions or
comments/questions...please mail me- vikeby@online.no.
Petter Vikeby <vikeby@online.no>
N-3727 Skien, Norway
Thursday, January 28, 1999 at 09:23:51 (EST)
I suffer from socalled "Horton's headache" (since 1989). I am 28 years old
and uses "Imigran" with fantastic results!
Hilding Runar <hrunar@online.no>
Lillehammer, OL Norway
Thursday, January 28, 1999 at 09:04:23 (EST)
Hi,I am a woman who just started getting my headaches. It started just after my
daughter was born. I have only been suffering for about 10 months now, but it seems like
the longest 10 months of my life. My headaches got so bad, they totally incapacitate me. I
have tried Darvacet, vicoden, you name it. At first I thought they were just sinus
headaches, but when I landed in the emergency room with one, I sat in stoopification when
the doctor said the words, "cluster headaches." My clusters typically occur
every other month right now. They are intense and painful as hell. giving birth to my
daughter was alot easier than putting up with these things. Anyone have any advice for me,
I would greatly appreciate it.Thank you.
Kim Iishiba <liv2dream@hotmail.com>
Escanaba, MI USA
Wednesday, January 27, 1999 at 15:45:50 (EST)
I am a 7 year old female who has been getting ch's since I was 18. Over the years
the pattern has changed somewhat. For instance, about 20 years ago they began to have a
very distinctive pattern. I would go 1 to 3 years between a cluster episode and be totally
headache free. When an episode started it would last anywhere from 4 to 12 weeks. They
start out "mild" (that means I can stay still during an attack) and progress
through the cycle to excruciating heights. You know what I mean. They seem to taper off
toward the end of a cycle. Without medication I would virtually be incapacitated for the
entire time. If I take 240 mg. verapamil (sustained release) and ergotomine or cafergot
before bed I usually will not experience a breakthough headache. Hope this helps someone.
By the way, I've just finished an 8 week cycle and the medicine kept me from getting any
headaches, except of course the first one which clued me in that I needed to start the
meds. Also, anti-depressant medication seems to have reduced both the frequency and the
intensity of the headaches. Please write and tell me your experiences. Maybe we can find a
common link.
Dale Ilene <Dstah@mediaone.net>
Newton, MA USA
Tuesday, January 26, 1999 at 23:31:32 (EST)
I am in my third episode of cluster headaches in about 6 years. It seems they are
worse and longer lasting than before, but anything this intense is best forgotten. I had
hoped this was just a fad, but I fear that I am in for something far worse.
Mark Chamberlain <markc01@bellsouth.net>
Nashville, TN USA
Tuesday, January 26, 1999 at 21:13:13 (EST)
I am a cluster suffer for about 15 years now, tried just about everything. One can
use imatrex but only 8 times a month, cafgot works for a couple of days, beta blockers
help to shorten the cluster period, oxygen will help to cut edge off as well a very hot
shower with the water hitting your temple and then turn the water to very cold, this seems
to help a little, another thing I use is 3-5 asprin or advil and a anti-inflamitory
(relafen)this will make the difference of double edged knife to a single edged (every
little diffrence helps. Non-suffers do not uderstand why this is nick named the suicide
headache unfortunately we will. Good Luck to all!
Christopher Chavez <c.christopher@mailcity.com>
Las Cruces, NM USA
Tuesday, January 26, 1999 at 18:47:49 (EST)
Wow, great site. It seems no one I know has ever heard of these things. My husband
has suffered since his late teens (he's now 36) and we are in the middle of another bout.
I am going to give birth to our second son in about 3 weeks and I am so scared that my
boys will go through the hell my husband does. Imitrex seems to be working, for now.
Thanks for letting me know that we are not alone.
Stephanie Oriwol <oriwol@storm.ca>
Ottawa, ON Canada
Tuesday, January 26, 1999 at 18:45:35 (EST)
My husband has been suffering with cluster headaches for about 15 years. In his
teens he did suffer a head trauma with loss of consciousness on the side he now suffers
the clusters. He has tried EVERY drug imaginable. Some, like ergotamine, start to work and
then wear off. Some, like Calan, Inderal don't work at all. The Imitrex does work for him,
but when he is in cycle he suffers attacks 5-6 times a day and it is not safe to take the
Imitrex that much. Imitrex also raises his diastolic BP and gives him almost every side
effect listed. The Sansert, which one pharmacist stated was taken off the market because
it is not safe, combined withe prednisone seem to be effective though he does experience
temporary vomiting when he starts taking it. Unfortunately, we cannot find any pharmacy
which stills carries the Sansert. Right now my husband is working, teaching college
classes and taking classes. I am afraid these will be insurmountable tasks if the clusters
do not abate. We are now trying a combination of high doses of magnesium, melatonin,
coffee and any over the counter pain reliever imaginable. As you can relate to, we are
both exhausted and stressed beyond believe from this excruciating companion. Does anyone
have a source for the Sansert? Also, any feedback on the melatonin? Thank you so much for
a place to exchange information. Noone who does not live with this looming demon can
imagine.....
Sandy <bash@pipeline.com>
NY, NY USA
Tuesday, January 26, 1999 at 15:11:14 (EST)
Chronic Migraine sufferer from head trauma.
Ron Bleiler <ronn@brandywine.net>
Lincoln University, PA USA
Tuesday, January 26, 1999 at 09:29:14 (EST)
cluster headaches 20years of hell for my family ;wife and myselfmy sons were 14 /15
when they started bring me to hospital in the car.to this day they help me, of 3 one also
has clusters,sometimes at the same time.we are in pain alot, sick, and tired
too.doctors,hosptials,medication,ive been there abused,refused treatment,ect,like i asked
for this,iam the living dead,what life,only pain and suffering,yet i go on ,how ,one night
at a time its 5;30am suffering in dark no meds ,me and my pain,all i can do is pray to
god,save me or take me ,goodmorning , thankyou.
don
troy, ny USA
Tuesday, January 26, 1999 at 05:35:02 (EST)
I am a 37 year old women who has been suffering from cluster headaches for about 4
years now. When I experienced my first one I thought I was dying. I thought I had a tumor
or an anuerism (SP). When I do get a cluster headaches I always feel like a need air. I
met a women who said her Dr. acually precribed oxygen and it helps. Each time I get
cluster headaches I always think or wish this will be the last and I'll never get one
again. I'm going to ask the doctor for oxygen to see if that works or at least helps. I
just want them to go away!
Suzanne Evoniuk <Sevoniuk@aol.com>
Antioch, Ca USA
Tuesday, January 26, 1999 at 00:04:47 (EST)
I've had clusters since I was 18, I'm 33 now. I've enjoyed the sight. THANKS
Stephen Ingersoll <sringersoll@mid-mo.net>
Fortuna, mo USA
Monday, January 25, 1999 at 21:30:07 (EST)
The good news is they are not fatal. They can't actually kill you. Although they
hurt like hell.
Bill B
CSC, CO USA
Monday, January 25, 1999 at 19:04:33 (EST)
Hello to all fellow travelers out there who suffer my malady. My heart goes out to
all of you who suffer. I have suffered from cluster headaches for about 23 years. I am
nearly 51 years old, and in the fourth week of this latest cluster. Three plus years had
gone by since my last one. I thought I was done! But noooooooo..... I usually endure this
utter misery for 4-6 months with multiple headaches every 24 hours, then have about a year
to year-and-a-half remission period. So after going *three plus years* without them, I
actually allowed myself to turn and look back and think, "hey, maybe this is now part
of my history!" You can well imagine that my whole world view abruptly changed when
over a 48-hour period three weeks ago I had 6 of them. As I read the words by many of you
in this guestbook, I have to frequently ask, "now when did I write that?", for
it's as if you are all reading my mind (or what I have left of one.) Like many of you, I
am adamant about not letting them screw up my life (though, for me, I would be hard
pressed to make a case that they haven’t!!) We do the best we can, ey? It’s a
good thing misery loves company. Welcome to mine!! I do look forward to communicating with
those of you open to it.
Jeff Glickman <glickman@csf.edu>
Santa Fe, NM USA
Monday, January 25, 1999 at 18:50:18 (EST)
I have been getting these headaches over the coarse of many years. I am 44 yrs old
now. I am currently in my 3rd week of the latest episode. They almost always strike after
I'm asleep and when I awaken I know I'm in trouble for the rest of the night. They usually
come in groups of 3 headaches exactly every 2 hours. Last night was 3am, 5am and 7am, and
then a dull hangover type headache the rest of the day. The period of time I get them
seems to last for about 3-5 weeks, sometimes only every other day. I have noticed a small
lump about the size of a pea during an episode in my neck on the side of the pain. I do
not have this lump when there is no headache present. I hope this spell is almost over,
although I was lucky because for some reason I skipped having them last year. I always
seem to get them this time of year (either Dec or Jan) Well anyway this web site is really
great and I wish all of you better health.
Tom Spellacy <TASpellacy@statenisland1.com>
New York, NY USA
Sunday, January 24, 1999 at 23:33:00 (EST)
I'm 33 and have been plagued by these BASTARDS since I was a kid. I'm angry... way
angry and I use my anger to fight them. I see them as "irritating creatures"
that try to beat me and slow me down and I rebel as furiously as I can. I eat well (force
myself if I have to), take vitamins and excercise to keep my body strong, and when the
"season" hits (2-3 months a year) I'm ready for them. I fight them with sheer
force... when the pain begins I drop down and start doing pushups... 20, 40, 80, 100...
whatever it takes! I get my heart pumping so hard and fast that these miserable bastards
just have to leave me alone... and they come back... and I chase them away! I don't
surrender and I won't let them take my dignity away. I don't always win, and sometimes I'm
left hissing and groaning like a mad animal... especially when they sneak up on me at
night, when I'm most vulnerable... but even then, I fight for my dignity and refuse the
urge to hurt myself (banging of the head, etc.) So my fellow sufferers, strike back... the
worst that can happen is you'll get really nice arms and pecs! ;) Good Luck' Andrea
Mr. Andrea Luminati <andrea5@ix.netcom.com>
Westlake Village, CA USA
Sunday, January 24, 1999 at 21:46:39 (EST)
Found relief with B2 after suffering clusters most of my life.
Bud Siemer <warbird@webtv.net>
Hewitt, NJ USA
Sunday, January 24, 1999 at 16:04:06 (EST)
I hear that usually women are not affected by cluster headaches. Well I am one of
the lucky few. I have had clusters since I was in my 20's and I am now 46. I usually get
the headaches between January and February and if I have made it theough February I am
home free. It has been three years since I have had a severe attack and I was hoping it
was the end. Three weeks ago my nightmare started and I mean nightmare. One hour almost to
the minute after I fall asleep they start. I jump up get the fioinal w/codeine and jump
into a hot shower. If the piecing pain continues I take the drug Zomig and in about 10
minutes I am down and can resume my sleep. The Zomig is longer lasting than Imitrex and
therefore I don't wake up with another headache for another 5 hours. it just drains the
system. My husband is tired of me and my kids and my work I know that it is hard to be
around people when they have a long term condition but I want nothing more than to be
NORMAL again.
Sandy French <sanny@thegrid.net>
Salinas, CA USA
Sunday, January 24, 1999 at 15:05:57 (EST)
I hear that usually women are not affected by cluster headaches. Well I am one of
the lucky few. I have had clusters since I was in my 20's and I am now 46. I usually get
the headaches between January and February and if I have made it theough February I am
home free. It has been three years since I have had a severe attack and I was hoping it
was the end. Three weeks ago my nightmare started and I mean nightmare. One hour almost to
the minute after I fall asleep they start. I jump up get the fioinal w/codeine and jump
into a hot shower. If the piecing pain continues I take the drug Zomig and in about 10
minutes I am down and can resume my sleep. The Zomig is longer lasting than Imitrex and
therefore I don't wake up with another headache for another 5 hours. it just drains the
system. My husband is tired of me and my kids and my work I know that it is hard to be
around people when they have a long term condition but I want nothing more than to be
NORMAL again.
Sandy French <sanny@thegrid.net>
Salinas, CA USA
Sunday, January 24, 1999 at 15:04:19 (EST)
hi my name is carlos and im suffering from chronic headaches since august1998.ive
been seeing many doctors and still they are not sure what to prescribe me.if any one can
give me advice on different medications or ways to get leep which i only get around 1 or 2
hours a day i would apprieciate any and all emails so i can talk with others who suffer .
carlos relta <crelta@aol.com>
bx, nyhello my name is carlos and im suffering from chronic cluster headaches USA
Sunday, January 24, 1999 at 05:42:48 (EST)
HI,, IM SAM , HAD THEM FOR 2 YEARS,,, LOVE TO TALK TO OTHERS,,,,,,,,,,,,, SAM
SAM <SAM9655@AOL.COM>
CAPE CORAL, FL USA
Saturday, January 23, 1999 at 21:50:20 (EST)
I'm so grateful to have found this site. I have been suffering from cluster
headaches since high school. I have the Cronic type and they suck. It's really helpful to
know that I'm not the only one with these monster headaches. Sometimes I wish I was dead,
but I know that's the coward's way out. Over the last 6 years I was taking Lithium &
Elavil and I would get maybe 3 or 4 headaches a month. But a couple of weeks ago they came
back full force and the medications aren't working anymore. I get what I call a lingering
cluster all day then at night (and anytime) I'll get the excruiciating blaster for up to 2
hrs. I'm going to suggest some of the medications that I read here to my doctor and
hopefully I can get control of this beast again. Thank you all for your notes of
encouragement and I pray that someday they can come up with some relief for us that have
to suffer needlessly. To all who have to live with this torture HANG IN THERE.
ken <kbearman@netscape.net>
spfld, ma USA
Saturday, January 23, 1999 at 21:33:34 (EST)
Hi! New to the site. I must say this was a wonderful site. Did a printout of the
ABOUT material to give to my GP. It was great to hear that we have been working with the
1st line drugs. Prindizone worked for me. 80mg reduced by 5mg gave me a free week or two.
But after 2 sessions Dr., was hesitant about a 3rd session in a month. Oxygen has been
working well but still up on the hour every night to breath O2 5-10 min leaves one pretty
fried the next day. I am now taking vorapimil 4 a day. I can't really tell you how this is
working because I had 2 crazy nights and then 2 clear, then irregular again. A couple in
the day. Does it take awhile for Verapimil to build up? Now What about this cortizone
shot. what dosage? My regularity is Nov to Feb every year in a variety of strengths. I
believe a have low level ones at other times but just bothersome. Boy you sure learn about
pain and I do believe we adjust to it. Being active mentally and physically helps. I spend
a fair bit of time away from home (and O2) my stay in hotels is my personal hell. Glad to
meet others. Cathartically yours _george
george collins <terrappin@sympatico.ca>
Tweed On, CanUSA
Saturday, January 23, 1999 at 17:07:10 (EST)
I've been sufferng from this thing for 17 years. It's wonderful to have others who
share these demons. Several of you have expressed comitting suicide, but that's not the
answer. Besides, your loved ones would probably develop CH's from the loss and we
shouldn't wish this pain on anyone. FIGHT IT!!!
Barry L. Coleman <barry44@gateway.net>
Augusta, GA USA
Saturday, January 23, 1999 at 14:58:02 (EST)
I have had episodic bouts of cluster heads for approximately 26 years. I am a 43
year old female, currently having episodes approximately every ll months, lasting
approximately 8 weeks. My current treatment is Sansert, which does help somewhat, but
during peak times it seems to be useless. Clicking on to this site was absolutely
incredible for me as I don't think you can explain to anyone but another sufferer the
incredible fear and helplessness we feel.
Karen <kski@penn.com>
PA USA
Saturday, January 23, 1999 at 08:46:38 (EST)
I have had cluster headaches for 11 years. I am 69 years old. I am currently in
remission. Steroids helped for a few years, but 6 weeks ago was put on Sansert, which has
presently put me in remission. I became immume to steroids and pray the Sansert works for
a long time. I prayed for death at the same time each day one hit. Same time of day and
same place over right eye always.
John Hash <jhash51176@aol.com>
Tx USA
Friday, January 22, 1999 at 20:41:51 (EST)
I have had cluster headaches for 11 years. I am 69 years old. I am currently in
remission. Steroids helped for a few years, but 6 weeks ago was put on Sansert, which has
presently put me in remission. I became immume to steroids and pray the Sansert works for
a long time. I prayed for death at the same time each day one hit. Same time of day and
same place over right eye always.
John Hash <jhash51176@aol.com>
Tx USA
Friday, January 22, 1999 at 20:41:40 (EST)
I had chronic intractable CH for years (7-8 two hour headaches for weeks on end). I
have been in remission for 6 years with a few close calls. I have learned that if you can
keep from getting the first one, you are golden!
Linda Larson <lindadiner@yahoo.com>
Annapolis, MD USA
Thursday, January 21, 1999 at 19:09:37 (EST)
Hi there !! I must say I teared up when reading the messages and the main page
stories. This site was referred to me by a very dear friend whose father suffers from CH.
I have had the symptoms described here for 16 years (now 35). My bouts cycle through
annually to every other year, 6-8 weeks at time. The one I'm in now is about to drive me
nuts. I showed my wife this site and I think now she understands why I am moaning, crying
like a babe and pacing in the middle of the night. Unlike other's here, alcohol (beer) has
actually helped me a couple of nights, although the next night seems to be more intense
(but at least I got one good night's rest). I have been diagnosed, but my Dr has not
perscribed any meds. My attacks last only 20-50 minutes. I have been afraid to take some
of the drugs fearing that by the time they work, my attacks will be over, so why the need
for the heavy drigs in the system if it's not going to act as a prophilactic . Anyway, I
am learning a great deal about CH, and am very glad I was referred to you site.
Kevin Bethel <kbethel@ionet.net>
Tulsa, OK USA
Thursday, January 21, 1999 at 15:09:24 (EST)
I have experienced cluster Headaches since 1982. I went to many doctors for years
and was never diagnosed correctly. They even had my wisdom teeth pulled as they thought
this would help me. In 1996 an intern finally told me I was experiencing cluster headaches
and perscribed Cafergot. Finally some help.
Michael Smith <msmith@atitech.ca>
Willow Beach, ON CANADA
Thursday, January 21, 1999 at 05:39:28 (EST)
I've had CH's for 6 years, and was out of work for the past year because they got so
bad. I just wanted to give up and die. I've fourunately found the right doctor, and/or
medicine, and /or the cluster cycle has subsided for now. I have my life back again!! My
prayers go out to all of you who suffer.
Joe Raymond <wwfraymond@aol.com>
Stamford, CT USA
Thursday, January 21, 1999 at 00:36:33 (EST)
I have had clusters for 3 years now,, I cant take them any longer,,,, need
help!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! please
SAM SEBASTIAN <SAM9655@AOL.COM>
CAPE CORAL, FL USA
Wednesday, January 20, 1999 at 21:11:45 (EST)
I've had CH's for the last 10 to 12 years. They usually last from between 30 to 45
day's, and then noe for a year to a year and a half before they start again. My heart
go'es out to those of you that have C H's continually.
Tom Koontz <gearhead@ime.net>
South Casco, me USA
Wednesday, January 20, 1999 at 19:07:52 (EST)
Am a cluster headach sufferer for the past twenty years.
Bill Leone <bllt@snet.net>
Bristol, Ct USA
Wednesday, January 20, 1999 at 16:18:00 (EST)
I'm 25yrs old & I've been suffering for about 10 years. I get them every 2-3
years & they last about a month & go away till next time. When I get them I just
want to commit suicide because the pain hurts so bad. I've tried just about everything.
The only thing that works it to be druged up for an entire month & hope when I stop
taking the medicine it goes away.
Tammy Adams
Johnson, tn USA
Wednesday, January 20, 1999 at 06:03:48 (EST)
Here it is, 4:30AM, and I'm glad to find your site.
Ken Kemski <kkemski@home.com>
Sarasota, FL USA
Wednesday, January 20, 1999 at 04:31:09 (EST)
Im a 54 year old white male who has been with C.H. for 15 years. My neurologest has
me on Nadolol, 40mg twice daily along with Stadol NS to take the edge off when they hit.
Been with this regimend for two years . IT WORKS! Is there anyone out there doing the
same?
C W Peterson <Waylay@ wt.com>
Texas City, TTex USA
Tuesday, January 19, 1999 at 23:02:30 (EST)
I've said this before and I'll say it again. Check out the entry from Brandon Snyder
re: benedryl, aspirin and coffee in the December entries. It really worked for me. Now for
a question for anyone who cares to answer. I went to the orthodontist today for reasons
other than my clusters. I found out that when he looks at my teeth from the inside of my
mouth that the left side of my jaw should be bigger, however when he looks at my face,
just the opposite is true. He has no idea whether or not this could be related to my
clusters or not. Has anyone ever been told they have this same problem with their bite?
Betsy Gabelt <sgabelt@neo.rr.com>
Alliance, OH USA
Tuesday, January 19, 1999 at 22:08:34 (EST)
Gee, it's so nice to see that I'm not alone with this "monster"! I've
suffered with these things for three and half years now. Been on so many medicines that
i've lost count. Just had my lastest onset in the past two weeks. 480mg of Verapimil
knocked them out this time. Prior attack was KO'd by Paxil. Hope you all have successes in
you treatment........believe me, I know what you're going through!
Mark <Mark4875@aol.com>
Drexel Hill, Pa USA
Tuesday, January 19, 1999 at 18:07:21 (EST)
interesting information. i've had 4 bouts so far since 1990. i really need to be
diagnosed.
chris moss <mossthom@erols.com>
USA
Tuesday, January 19, 1999 at 13:15:07 (EST)
I had CH for several years in my mid twenties. After 15 years of no more pain they
have returned. I have enjoyed your site and the shared information. Well its time to call
my doctor again!
David Frazier <dfrazier@asheboro.com>
Asheboro, NC USA
Tuesday, January 19, 1999 at 06:50:05 (EST)
Hi I'm not a cluster sufferer myself but my father Noel is. for a years now he has
been describing these incredible headaches and has tried hundred of doctors and
"remedies". They hit him sometimes 8 times a day for about 3 months and then
dissappear. This recurrs every two years like clockwork. Twelve years ago I caught him
crying and banging his head against a wall, and for the first time I began to realise how
bad it was. I still feel as frustratingly helpless as I did then, when I hear that dad's
headaches have started again. Only a month ago, at the age of 62 has a specialist been
able to help him give his deamon a name. His loving wife Anneliese ( my step mom ) is at
the end of her teather. I can imagine how helpless she feels.
Brian Durrant <proimage@mweb.co.za>
Johannesburg, South Africa
Tuesday, January 19, 1999 at 05:40:39 (EST)
Finally! People who understand, and dont think its psycho-somatic. I have suffered
from CH since I was 19 (am now 28). They started in episodes of 2-3 weeks every 2-3 months
but this has gradually altered to 6-8 weeks twice a year. They dont seem to be as
excruciating as they used to be (average CH about 8 out of 10)but I suspect that my
perception has changed rather than the CH's themselves. Like a lot of people I have done
the rounds of sceptical and ignorant medicos, I had to self-diagnose eventually( Im a
registered nurse and I researched a lot at work.) I have tried most painkillers and some
anti-histamines with little result. I dont know if any one else has experienced the
phenomena I am about to describe but sometimes a certain painkiller etc will knock them
out and I think that Ive found the miracle cure, only for it to be totally useless the
next episode. In one episode when I was in England, simple asprin was giving good relief
if taken early on. The next episode it was totally impotent. My CH's seem to start at the
base of my skull and run right over my scalp, through the temple and into my eye on the
right side. I nearly always have lacrimation from my right eye and when they are
paticularly severe my right nostril will run freely as well. Other symptoms include
nausea, lethargy and over-heating. I used to fear them, now I just hate them, and am
hoping that I will eventually grow out of them. Would love to hear from any other
sufferers, especially from Australia.
Scott Maynard <scottmaynard@hotmail.com>
Bendigo, Vic Australia
Tuesday, January 19, 1999 at 00:08:29 (EST)
I have suffered with what the nuerologist diagnosed as chronic cluster headaches. I
am 30 and have had them since I was 20. I can get them once or twice a week and they
usually last for 12-15 hours. I have been taking cafergot for about 5 years. My doctor
wants me to try something different. He says that too much cafergot is not a good thing.
Now I'm trying migranal, an ergotimine nasal spray. I usually wake up in the middle of the
night with the sensation over my right eye and if I don't get it in time with the spray or
the oral cafergot... I'm toast!
Jon Osmond <jonoz@hotmail.com>
Edmonton, AB Canada
Monday, January 18, 1999 at 18:59:39 (EST)
I am new here, and new to CH. It started about 10 months ago. I am 41 with a very
supportive wife who insist on me going to a doctor. I usually on have 1 ch every couple of
days, usually in the evening when I am just relaxing. They never seem to happen if I am
busy working or something. I really feel those those who have it much worse, I know what
it is like. When I was a teenager I suffered from severe migrains that really made me sick
and unable to function. It is bad when you can't really enjoy yourself wandering if you
are going to have an attack, nobody seems to understand. I sell Real Estate and have and
them occur while showing houses, making it hard to concentrate on what is going on. I
haven't been to the Dr. yet hoping that they would go away, but from reading your guess
book and articles it seems as though they probably won't.
Doug Breeden <dbreeden@i2020.net>
Rochmond, va USA
Monday, January 18, 1999 at 18:19:32 (EST)
I feel your pain. I am a 29year old male and have suffered since the mid eighties.
Every two years, 3to 4 times a day for six to eight weeks. The clusters are comeing closer
together as I get older (one season closer every two years). This is very concerning as
I'm sure you know. My magic cure (I have tried them all) is O2 and Vicadin. I find that
taking two before bed allows me to sleep through the night. A few during the day makes
life bearible and also allows me to hold a job. I am also very lucky to have an
understanding, supportive wife. I cannot tell you how much this site has done for me also.
It sucks to be a victem, but comforting to know I am not alone. Thank you to everyone for
being supportive and I prey you find your cure.
Jeff Centers <jcenters@fmlh.edu>
Milwuakee, WI USA
Monday, January 18, 1999 at 16:31:32 (EST)
Our company is currently testing a new chemical entity in the treatment of cluster
headaches. We are currently treating patients in clinicals trial at several sites
throughout the country. We are seeking additional patients for enrollment and would like
to know if it is possible to utilize your website as a vehicle for obtaining additional
cluster headache patients. We would be happy to provide you with additional information
about our study. Please let me know as soon as possible if you are interested as we are
very eager to proceed. Thank You!
Jim Demas <winstonlabs@ameritech.net>
Vernon Hills, Il USA
Monday, January 18, 1999 at 15:04:56 (EST)
Cluster headache sufferer. Interest in talking with others who have unfortunately
experienced this pain staking ailment to find out what works for them in stopping the pain
and breaking the cluster.
Mark <mlaing@tracor-es.com>
Sterling, VA USA
Monday, January 18, 1999 at 13:18:02 (EST)
Greetings. I'm 32 and have been suffering from CH since around 1981 and, since then,
each year they seem to get worse. I'm lucky enough to have a job where I can stop working
during an attack and come back a few hours later to continue my work. Thank God for
Imitrex though. It works reasonably well for me, although some times it just seems to dull
the pain for a couple of hours. Are there any new treatments that folks might know about?
Simon Webb <montador@earthlink.net>
Montreal, QC Canada
Sunday, January 17, 1999 at 16:49:39 (EST)
My english is not the best so I hope you´ll exuse. I´ve been suffering chronically
since 1981, 1 to 6 times aday.I use Litharex on regular basis and when it gets real bad I
go to hospital for a Cortison cure.Painkillers makes it even worse so for me heavy walking
is the best way. Since 1981 I´ve walked the globe almost twice in my appartement. Don´t
give up! Dick
Dick Forsberg <dickstrix@telia.com>
Stockholm, Sweden
Sunday, January 17, 1999 at 15:47:30 (EST)
My husband started getting clusters in his late 20's - he got the first one after a
transcontinental flight on a prop plane when he had a bad cold. They'd come approximately
every 2¼ years and last several months. He was prescribed Cafergot to be taken at first
sign. Tiny bit helpful. When he was in mid-40's considered having facial nerves 'frozen'.
Clusters went away on own. At 70, he needed to have aortic valve replaced. No other heart,
artery or cholesterol problems. Ergot works on same serotonin areas as the diet drug combi
Fen-Phen - which also caused aortic valve problems. Now, year after valve replacement -
with blood and oxygen flows back to 'normal' - the clusters have returned. Prednisone
helped some, but the side-effects can be deadly. Tried oxygen unsuccessfully; besides, at
levels needed it damages lungs. Current prescription = ergotomine. (Round and round.)
Nothing works on the bad ones. No tie-ins to foods, cigaretts, alcohol, stress.
Ardy <ardy@exploremaine.com>
ME USA
Saturday, January 16, 1999 at 21:16:45 (EST)
hi, my name is dan form wilkes-barre,pa., and i would like to know if other ch
people have the same problem that i have. i have been married for almost 17 years, and my
wife still has a hard time dealing with my headaches. she is, almost always, telling me
that she is tired of hearing that i have a headache. i get chronic clusters, for about 12
years now, and have tried every med. on the market, with little or no luck at all. i know
that it must be hard for my wife to not only see me suffering, but also taking care of the
house and kids. i have a 15 yr. son and a 12 yr. daughter. but from my side of the coin, i
am the only one working, so it's not easy for me or my wife. the biggest problem is that
my wife is at a point now where she just can't handle any more of anything! i am realy
looking for some advise on this problem. by the way, i have been all over the usa, and in
europe looking for anything to help. i have had only 2 weeks headache free in 12 yrs. so
it realy hasn't been a party for me either! despert dan
daniel ellis <avz@epix.net>
wilkes-barre, pa USA
Saturday, January 16, 1999 at 20:12:18 (EST)
i have suffered from cluster headaches since 1977, in high school. i have found help
5 years ago with the combination of lithium and amit- riptyline hcl, but lately for some
reason the damn headaches are back again torchering me for over a week now.
ken <kbearman@netscape.net>
spfld., ma USA
Saturday, January 16, 1999 at 19:08:04 (EST)
This is the second time this treatment has broken my c/h cycle this year and I
wanted to share it. I used to take Sansert and Prednisone when in a cycle, but heard
Sansert has some bad side effects and the Prednisone made me gain weight. Doctor suggested
going off both and getting a Cortisone shot that lasts about 3-6 months. I did this in the
Spring/early Summer and it worked! Broke the cluster cycle with no ill side effects. Then,
just two wks ago, clusters started to appear in the middle of night/early morning. I ran
back to that doctor and got another shot of cortisone...and the headaches have stopped
again!!! I know we all have our own treatments, and what may work for one person may not
work for another...but it is a suggestion, an option, and definitely worth a try. It has
helped me beyond belief. Good luck and keep looking until you find your relief!
Laura <LLKKHH@aol.com>
Cleveland, OH USA
Saturday, January 16, 1999 at 06:09:40 (EST)
I am just waiting for another cycle to begin, it's that time of year. I have lost my
HMO due to my company's sale to a larger one, I am doomed without my HMO. My cycles have
gotten farther apart but greatly intensified. If my next bout is worse than my last I
doubt that I will survive it. I dread the feeling of the one, knowing that it will only
get worse from there. I have used Demerol to break these cycles early, at least by a
couple of weeks anyway. A new doctor & new insurance is going to be the death of me.
Gene <dirtyhurry@aol.com>
Grand Rapids, MI USA
Friday, January 15, 1999 at 18:57:00 (EST)
I'm 26 and have suffered with this pain since I was 7. I just moved to Boston. Does
anyone know of any clinics - traditional or alternative in the Boston area? Thanks. Hang
in there. Joel
Joel Simon <joelws27@aol.com>
Boston, MA USA
Friday, January 15, 1999 at 14:45:09 (EST)
I'm 51 got this monster about four years ago for the first time. Got luck my GP read
an article in the Canadian Medical Journal re CH, called me at work and bingo. My head doc
new about CH, another lucky break. I don't know of any other person with this problem
except for the folks on this web site. Most drugs have worked but take time to build up in
my system. When my bouts start I also hate to go to bed. Little trick set the alarm for 45
minutes wake up and sit around for about five minutes or so. Go back to bed and do the
same thing set the alarm for 45 minutes. You never hit REM, feel like dog do in the am but
the monster nevers comes. I will be back to this site to share info. Harold
H. Langille <langille@post.bell.ca>
Mississauga, Ontario Canada
Friday, January 15, 1999 at 12:46:28 (EST)
I’ve suffered cluster headaches on and off for more than 20 of my 40 years. My
doctor has labeled me as chronic because this latest round has lasted for over two years
now with no break. I know of no one around me such as friends or co-workers that can began
to understand what I go though and so I feel so much better posting this message and being
able to share my pain with people who can relate. Like many of you I have taken several
medications but the best combination for me seems to be Lithium and Sansert. I also found
that exercise helps in reducing the severity of an attack. I take Melatonin before bed and
I don’t suffer these headaches at night when I’m trying to sleep. However, first
thing in the morning when I awake is my worst time of day, many times I drive to work with
one eye on the road and the other bloodshot red, watering and closed from the pain. My
doctor tells me (maybe some of you can comment on this) that one thing about CH is that as
you get older beyond 40 the headaches progressively go away.
R. Wilson <rdwilson@amp.com>
Greensboro, NC USA
Thursday, January 14, 1999 at 15:09:44 (EST)
I'm 36 now and have had these headaches since age 20.Although my headaches started
out as episodic,they have basically become daily.Without oxygen and imitrex my life would
be unbearable.Has anyone found the drug wellbutrin to be effective for these
headaches?????
PHILIP[ J DOHERTY JR <KINGSWORLD-69>
WOBURN, MA USA
Thursday, January 14, 1999 at 14:52:58 (EST)
Finally there are people out there getting the story, these things hurt. I am 43 and
have had clusters since my mid teens. They started out once a year but have progressively
spread to a period of every two years. In the last bout, it was two years to the day. Now
I'm ready again any time. Mine have normally lasted about 3 to 4 weeks, getting 1 to 2
headaches a day. Normally at night in my sleep. Now I work a graveyard shift and hoping
they stay away while at work. Well see. Anyway, thanks for being here, this is great. The
one thing that has been the most irritating, is that no one, especially doctors, seem to
realize just how bad they really are. I guess you have to have one to know.By the way, I
have taken most of the drugs and oxygen with very little results. The last couple of
attacks I have used Stadol inhaler for pain and it has made the headaches bearable
Tim Paul <tpaul@onlinemac.com>
Grand Ronde, OR USA
Thursday, January 14, 1999 at 13:56:08 (EST)
Well, just caught up on reading the messages from December and already so many this
month. I know that you all have your own methods to treat these horrible headaches, but
try to remember that some of the medications prescribed to us have long lasting side
effects. Prednisone, Sansert, and many others may lead to damage of the liver. Not good!
The information is available to you from your doctor or pharmacy, but I like to read it
myself from the Physicians Desk Reference, (PDR) Just restating what I have said before,
be an informed consumer. Also try finding in the library, Cluster Headache Syndrome by
Ottar Sjaastad. To answer the question of why don't doctors try harder to figure this out
and why isn't research done...The answer is that there is no funding for research and no
money to be made finding the cure. I'm afraid we are going to have to figure it out
ourselves. Keep the suggestions coming and maybe we will!!!
Reece
Lafayette, USA
Thursday, January 14, 1999 at 11:58:49 (EST)
Hello friends. I am 38 and suffered my first episode at age 17 following a smallpox
booster. I have just started a new cycle after a 7 year break. At the last event I began
taking a Calcium Chanel Blocker (Procardia XL). Within three days the pain subsided to the
point that it was treatable with a single ibuprofen, and within 2 weeks the cycle had
terminated. This current cycle is the mildest ever (painwise), but I noticed that I was
not experiencing REM sleep. I started on CCB's again and imediately began to dream again.
You can not believe how much more rested I feel. I think that I was avoiding dreaming
because that is when my headaches start. I am currently using Dilacor XR (diltiazem
HCL)180 mg capsules, but I split open the capsules and only take one of the 3 tablets
inside, (thus I am only taking 60 mg per day). The pain is still there, but is treatable
with Ibuprofen and I don't suffer the errectile disfunction associated with the higher
dosage. It is a good compromise. Because of the smallpox booster triggering my first
episode I can't help but believe that we are all suffering from one of the symtoms of
cowpox or some other similar virus. I was wondering if anyone out there has tried to
arrest an episode using Valtrex or some other herpes medicine? I hope that this info can
help someone, I know the torture that you are experiencing. The pain is only matched by
the mental anguish from a lack of restful sleep. I wish that I could give my name and
E-mail address, but I can't. If you need more info from me please post a message on the
bulletin board and I will respond. Good luck and keep on fighting!
Dave
USA
Thursday, January 14, 1999 at 02:58:01 (EST)
I got a cluster headache when I was 13 and again at 18 and didn't know until the
last few weeks what they were. Each time I was in terrible pain for 1 hour and the
headaches reoccurred every day for 1-2 months at exactly the same time. I have never
experienced such pain and it is very helpful to know that I am not alone, or
overexaggerating. Despite having occurred only twice so far, I can remember the
experiences in vivid detail. It is such a relief to know now the name of the pain.
sarah
USA
Thursday, January 14, 1999 at 00:33:57 (EST)
My thanks, also for this site. Where was the Internet 34 years ago when I got my
first CH (I just posted "the story" on the message board today).
Bob Cash <bob_cash@compuserve.com>
Cleveland, TN USA
Wednesday, January 13, 1999 at 13:51:16 (EST)
Hi (and THANK YOU)! My name is Jerry Smith. I am 59, just retired from Caterpillar
Inc. Two months ago, I resumed C.H.A. after a 25 year absence. I am treating myself with
100% O2, thanks to knowledgeable, young MD at ER at OSF Hospital. I have fired the stupid
Psychologist who trated me for mild depression, followed by mania, which occured in
preceeding 15 months, because she did not want to hear/trat anything to do with
migraine/clustewr headaches. I have been an uncommenly high user of InterNet for someone
my age and found this and related sites shortly after onset but, only after returning from
high mountains of Colorado, where it was not available to me. I will eard all YOUR storys
during "awake" periods in my 24 hour day, as I experience UP TO 24 C.H.A. per
day, lasting from 5 to 20 minutes with O2 interuption ... periods of sleep are from 20
min. to 3 hours but NEVER more. More later (about when I used to shhot myself with
CAFFERGOT out in the middle of India 35 years ago) ... in the meantime, keep up the
EXCELLENT communicating work. P.S. Does anyone have info on harmfull effects of
"contined O2 inhalation" as suggested/warned by a "local Neuro" ...
i.e. "fibrosis in lungs?" Much appreciated. Jerry Smith gbmasmith@aol.com (309)
693-1220
Gerald B. Smith <gbmasmith@aol.com>
Peoria, IL USA
Wednesday, January 13, 1999 at 06:23:11 (EST)
I've just found this website. I'm a new suffer, and this is day #31 and I am at my
wits end. Diagnosis: Cluster Headache. Afraid of the "big" drugs, mainly
sticking with mild pain killer. Missing a lot of work. Wearing me down. Would love to hear
from ANYONE. I could use some serious support. I am a 38 year old female, otherwise quite
healthy, but this has me feeling like there is no end in sight. Hoping to hear from
anyone. Thanks.
Suzanne <Dalla80950@aol.com>
Dallas, TX USA
Wednesday, January 13, 1999 at 00:00:45 (EST)
Sufferer for 14 years, age 48. Diagnosed by my own research (dozen different
doctors). Onset after 14 months in the fall winter cycle on Dec. 16. 1-1.5 hrs after
bed/sleep and early to mid mornings. Triggers: alcohol, suspect diner foods, processed
foods/commercial baked goods (i suspect cooking/ baking oils). Things that help shorten
episodes: new one*** hot brewed coffee at first signs, hot towel soak/wringed out applied
over affected eye/nostril area, forced burping at first signs (continuously), walking
indoors/ends sooner out in the cold air. Thanks for this site and your time. I understand!
ken <kenj@netheaven.com>
brant lake, ny USA
Tuesday, January 12, 1999 at 21:16:38 (EST)
Been a while since I've been to the site. It's amazing how easy it is to forget the
horrid pain of clusters. I have been free for 1 1/2 years, although, I have on occasion
'skipped' years, expect them to be back in the spring though. Just read 'Dawn's' letter,
please Dawn, there is hope. Three years ago I had the worst ever, I was getting rebound
(4-6 shots/day) from Imitrex - my doctor cut me off. I told him to find me someplace to go
or put me in the 'nut' house. I finally found my 'miracle' the DIAMOND HEADACHE CLINIC in
Chicago (www.diamondheadache.com). They treated me, sympathized with me and 'broke' my
cluster up. I live 4 hours from Chicago, but the minute I start a cluster I hit the
road!!!! They have people from all over the world come to them. They are miracle workers
and they study and treat and understand all about CLUSTER headaches! Most insurances do
pay for this also. Good luck to everyone, don't give up, don't let these monsters get us!
Wendy <ksmith@t-one.net>
MI USA
Tuesday, January 12, 1999 at 08:32:08 (EST)
I have been a CH sufferer for many years. Thank you for this fantastic site. Very
informative and helpful.
Robert Burrell <rburrell@flash.net>
Ferndale, Mi USA
Monday, January 11, 1999 at 20:17:25 (EST)
I've been sitting here for almost 15min looking at a blank entry screen becaus i
just dont know what to wright.I've read over a hundred messages of people discribing my
life. I have had CHs for nine years now.like every body else i have tried any and every
thing that is possible to me with little to no luck.I have spent many a night alone in a
dark room, with my head pressed against my ac unit wondering how much longer i can hold
out,and it might sound bad but i'm glad i'm not alone.
D.CLEMENTS
california, MD USA
Monday, January 11, 1999 at 15:15:05 (EST)
After 28 years, a real information source! Thanks to all involved in putting it
together. The thing that really upsets me more than anything, is going to the ER in the
wee hours of the morning seeking relief, and the ER doctor thinks you are putting on, or
just wanting a shot of demerol. They don't understand. I was once jailed and confined to
an alcohol abuse center for a weekend because of a CH. The ER wouldn't treat me, so I
decided to leave, and they actually confined me with restraints, called the cops and had
me put in the local "drunk tank". I had a few drinks before the headache
started, but was nowhere near intoxicated. Fortunately, my wife came to my rescue the next
day, and "retrieved" me, but only after the shrink at the instutition told
everyone I didn't need to be there. May the whole bunch who did that to me suffer CH
daily. My main line of defense is Midrin. Taken at the first indication, the drug will
abort the things 99.9% of the time, and like the slogan says, 'never leave home without
it'. I'll certainly have to ask the Dr. about some of the other treatments I've read
about. Prednisone has worked well for me to break the cycle also. I was headache free for
15 years, then a bout for a few months, then free for 5 years, another bout of a month or
so, then only 2 years between. Those lasted nearly 4 months, off and on, and now, nearly
every time I have to dose with nitro, I can almost assuredly take a Midrin behind the
nitro. Kinda ironic, one to open the arteries up, and another to close 'em back down! May
we all find permanent relief soon.
S.W. Drinkard <wa4phy@bellsouth.net>
Martinez, GA USA
Monday, January 11, 1999 at 14:24:21 (EST)
I have suffered since3 1973. I'm experiencing a bout now and this page has been
helpful. I have tried most medicines but Oxygen was the best for me. Most of my years I
have found a place of extreme cold and allowed my body to freeze to stop the pain. This
can annoying an night when you're sleepy, but it during a "session" of cluster.
Hang in there. Someday a real cure will come. I pray that none of our children will
inherit this horrible affliction. Peace.
Josef Rasheed <sheed88@aol.com>
DeSoto, TX USA
Monday, January 11, 1999 at 11:46:07 (EST)
I thank you beyond words for what you are doing here. For those of us that suffer,
it's frustrating attempting to describe how devestatingly painfull these things get (to
someone who has never experienced one first hand) only to receive the "He's
over-acting" look, and it sure is nice to find that somone understands.
David W <Spawnflake@aol.com>
Fresno, Ca USA
Monday, January 11, 1999 at 05:17:32 (EST)
Thank you for this site.
Mary Libra
Saint Paul, USA
Monday, January 11, 1999 at 01:17:45 (EST)
THEIR BACK!!!! After being in remission for over 10 years THEY HAVE RETURNED. I had
forgotten how bad they were. I had forgotted what it felt like to be afraid to go to
sleep. I had forgotted the embarassment when I had to tell some one that I couldn't do a
job because of a headache. I had forgotten how scared my wife would get when she heard my
moans, and say me banging the side of my head with tears running down from my eye . THEIR
BACK!!! and I'm terrified!!!!! DDN
Doug <DDN9797@aol.com>
Topeka,, Ks. USA
Sunday, January 10, 1999 at 22:21:45 (EST)
hi just stopped by to say hello , have been headache free 7 months now but awaiting
their return. lately last 2 episodes..verapimil up to 480 a day total and sansert for a
couple of months seems to work
mike <Meezee@AOL.com>
ny USA
Sunday, January 10, 1999 at 21:43:32 (EST)
Hello. Many thanks for the website. I've been having CH each winter forthe last 15
years or so. Right now prednisone seems to keep them at bay. I can manage on 10mg per day,
but dont like taking it. The headaches are worse though. Middle of the night, difficult to
get rid of etc. I've had some success with Excedrin after the ch begins. But sometimes
it's two or three hours of pain - the natural cycle of my headaches probably - and no help
from Excedrin at those times. I would like to investigate the daylight sensitivity aspect
of CH since I only seem to get them in the winter (Dec - Feb). Perhaps a move to the
tropics is in order? Thanks again for this website. No one I know has clusters or is
familiar with them. I feel less isolated now.
Ken Levin <klevin@svn.net>
Point Reyes, CA USA
Sunday, January 10, 1999 at 21:18:54 (EST)
Hello. Many thanks for the website. I've been having CH each winter forthe last 15
years or so. Right now prednisone seems to keep them at bay. I can manage on 10mg per day,
but dont like taking it. The headaches are worse though. Middle of the night, difficult to
get rid of etc. I've had some success with Excedrin after the ch begins. But sometimes
it's two or three hours of pain - the natural cycle of my headaches probably - and no help
from Excedrin at those times. I would like to investigate the daylight sensitivity aspect
of CH since I only seem to get them in the winter (Dec - Feb). Perhaps a move to the
tropics is in order? Thanks again for this website. No one I know has clusters or is
familiar with them. I feel less isolated now.
Ken Levin <kloevin@svn.net>
Point Reyes, CA USA
Sunday, January 10, 1999 at 21:17:16 (EST)
Had this demon most all of my adult life and wouldent wish it on my worst enemy.
scotty wulff <scottlot@aol.com>
jacksonville, fl USA
Sunday, January 10, 1999 at 18:16:37 (EST)
"Food Groups" New subscriber looking for tips... Does
coffee,tea,chocolate,nuts or anything else seem to instigate a CH?
Jim H. <holden1@home.com>
San Clemente, Ca. USA
Sunday, January 10, 1999 at 09:39:19 (EST)
Stumbled into this site by chance, I too have suffered these headaches for years. To
the point of vomiting, diarrea, medication overdose to the point of feeling my heartbeat
irregular, even the thought of suicide! I finally was tested foe allergies, guess what, I
was allergic to feathers (was sleeping on a feather pillow) also many food allergies. I
soon learned what to avoid and when I see those fashing lights in my eyes take an
antihistimine and aspirin, generaly this will keep it from being severe. I have went from
three to four headaches a week (lasting up to twelve hours) to maybe three or four a year.
Hope this helps someone, God Bless & hang in there!
Rainy <faubionl@ptinet.net>
Elma, Wa USA
Sunday, January 10, 1999 at 01:53:01 (EST)
My husband is a chronic CH sufferer.My heart goes out to all of the people out there
who suffers from this monster.I do not understand why so many must suffer and so little is
known about this conditions. I have talked to so many Doctors and you can tell that they
don't have a clue of what to do to help.I pray everyday that some kind of treatment is
found.
Donna <kyburgan@bellsouth.net>
Louisville, Ky USA
Sunday, January 10, 1999 at 01:11:44 (EST)
This site was first brought to my attention through a great friend of mine who is
also a long time sufferer. As I sat and read some of u'r stories I read of people shedding
a tear, and thought to my self, 'boy these people must be very sensative human beings'. As
I was not affected in this way until I read a note about a man and his son, the son wakens
to hear his father crying and imediatley bring a cold compression. I then she a tear, it
is so hard, i know to get u'r family or patrners who are not sufferers to understand the
pain and trauma we go through. I have had my fair share of trying to convince these people
in my life and GP's that i am really ill. I feel that it is the worst when a docter or
nurse does not belive u and thinks that u just want the attention for drugs. This did
happen to me and boy did i let her have it. Mind u this was on mothers day in a
restaurant, i spent the day in the car until i could bare it no more, and made them take
me to a 24hr doctors. At this point my family thought i was pulling a shonky and thought i
wasn't in as much pain as i led them to believe...so i can sympathise with u all. I have
also tried prophylactic's and knock me out drugs, most of the time they dont work,
although migral..(which apparently is not reconmened much anymore, because of the rat
poision) helps my mother and me. But as u know u have to catch it in the right moment! My
mother and i are the only one in our families on both side to suffer, but u know my mother
still goes to work and stares at a computer all day. (and yes she does wear glasses)
Whereas for myself, i'm out for the count, i cant evan hold a conversation. So maybe her
thresh hold of pain level is higher than mine. This has also restricted me from work as
someone mentioned, how can i tell my boss that I can't come into work to day coz i ahve a
headache. anyway i have babbled on long enough, keep u'r chins up and drop me a line if u
wish.:)
Jane Carne <agray@wantree.com.au>
adelaide, South Australia Australia
Saturday, January 09, 1999 at 11:17:32 (EST)
This website is a "discovery" passed on to me by a good friend, Alison.
She was so upset when she realised that the medical profession had no answers to intense
headache pain, ater all anatomical scans had proved negative. My experience with these
headaches goes back over 20 years, alcohol being the most reliable trigger. Also tiredness
and low blood sugar if I hadn't eaten for a while. The pain behind the eyes is the sign of
an impending "WHOPPER". I once described my symptoms to an emergency room
intern...who I later found out had described me as "STRANGE"..She had humoured
me & dent me off with some chlorpromazine which did nothing. Well fellow
sufferers....are we really strange for being lucky enough to have these headaches ? I had
been getting protection from the pain via the anti-depressant Phenelzine...(Nardil)..
However, of late & since a recent seizure of no known cause, the headaches are back
with a vengence. This site offers some treatments that no "doctor" has even
suggested. Even the protection afforded me by Nardil was a chance discovery of my own.
Says a lot about ignorance of this & other pain syndromes by the medical profession.
Keep up the good work. Andy Richards....Fellow sufferer.
Andy Richards <kaz@picknowl>
Adelaide, SA Australia
Saturday, January 09, 1999 at 05:29:04 (EST)
This website is a "discovery" passed on to me by a good friend, Alison.
She was so upset when she realised that the medical profession had no answers to intense
headache pain, ater all anatomical scans had proved negative.. I had been getting
protection from the pain via the anti-depressant Phenelzine...(Nardil).. However, of late
& since a recent seizure of no known cause, the headaches are back with a vengence.
This site offers some treatments that no "doctor" has even suggested. Even the
protection afforded me by Nardi wasa a chance discovery of my own. Says a lot about
ignorance of this & other pain syndromes by the medical profession. Keep up the good
work. Andy Richards....Fellow sufferer.
Andy Richards <kaz@picknowl>
Adelaide, SA Australia
Saturday, January 09, 1999 at 05:09:19 (EST)
This is my 3:rd time. The first and second were one year apart, and lasted 4 resp 8
weeks, this one came back after 2 years. I am now taking Prednisone agaist it.
Mr. Reima Raja-aho <Raja-aho@bigfoot.com>
Townsville, Qld. Australia
Saturday, January 09, 1999 at 02:45:52 (EST)
18 years I've been putting up with this and NO-ONE understands. No-one wants to
understand. Everybody elses ailment is "better" than ours. What do you mean
there is treatment available? Never heard of such a thing. Thankfully my attacks are not
that bad and with time are diminishing in frequency. Used to be every 6 months and this
last time is 2 years. Been paying a lot of attention to triggers. I always seem to get
them when my system is low, like January, after an illness, big-screen TV in a dark room
(last night). Alcohol seems to be a trigger but only after an incudence has started. I
remember the first time I got one. I was 24, had broken my wrist in a fall, and contracted
the flue, all in a matter of a few days. I thought I was dying. My best "home
remedy" is a hot water bottle alternately on the head and the back of the neck.
However, don't do like I did when the pain was so bad. That was to get the water so hot
that I burned me forehead, but the headache went away. Its nice to know that there are
others out there who know.
Stew <stugibb@escape.ca>
Winnipeg, Mb Canada
Saturday, January 09, 1999 at 00:26:26 (EST)
Hi my name is jane and i am 28 y.o., i have suffered with sever headachessine i was
about 10 y.o. Over the years they have become more frequent and painful. I evan started to
lose my vision. If i am going to have a a really bad one either the muscles behind the eye
get very sore to touch and or to look around. i had a cat scan about 5 years ago and it
was clear. They even removed all four wisdom teath, thinking that it was the cause of my
migranes. And yes they did stop for about 2 months, then started to come gradually back. i
very rarely be sick from the migranes', just the blood pumping through my head like a
river thats been couped up behind a damb and then let lose, only to find an other dead
end. I am finding during this heat wave that we are having here in Australia, my migranes
have turned into more of the cluster type. So I sympathize with u all wout there. I read a
couple of examples of others experiecnes, and i must say that i had a tear or 2 for the
people it was discribing...if anyone wants to talk to me for a shoulder to cry on I am
here. E-mail me : agray@wantree.com.au be strong to all xx
juda <agray@wantree.com.au>
adelaide, sa Australia
Friday, January 08, 1999 at 09:57:49 (EST)
I am so glad to see a site where people suffering from our affliction can turn to. I
feel blessed not to suffer as much as others do, and hope that there are others out there
who feel that they are blessed, not to suffer as I do. I have only recently been diagnosed
as having cluster head-aches. Thank you for existing. I pray that we all may find relief.
Nacht
nacht <nacht66@hotmail.com>
USA
Thursday, January 07, 1999 at 16:06:23 (EST)
i have been geeting chronic cluster headaches for more than 12 years. and you would
think that with all the modern meds. that they could help, but they can't! i have been all
over the country looking, but haven't found any help yet. i have to live on pain pills. i
just try to forget about yesterday, don't think about tomorrow, and try to get through
today!
danny <avz@epix.com>
wilkes-barre, pa USA
Thursday, January 07, 1999 at 12:00:30 (EST)
I have been getting these pains behind my left eye for about the last 3 weeks. The
pains are so strong and painful that I prey for them to go away, and when they do after
about 30-60 minutes I feel so thankful. When the pain occurs my eye (left) tears for some
reason unknown, I awake form sleep to sit, pace, fill my mouth with warm water, press my
head hard with no relief. I am a healthy 25 year man that exercises 4-5 days a week. I do
not smoke and only drink once a week (very little) I am mad to have this happening to me,
and would wish this pain on no one. I am currently up at 2:00 am an afraid to go to sleep.
I'm not the most studios of individuals and out of my element typing on this forum, but at
this time of night I don't want to bother my roommates or my friends. I guess I should get
checked out because it may be something else in my head, but what I read in these other
notes they seem describe the problem so well. I know there are so many worse things out
there occurring to other people that deserve much more attention and concern, I just
needed to talk to someone even though it may only be myself. I'm sorry for everyone that
suffers out there and I hope you can and will fill better.
SHAWN BATTS <SBAT55.aol.com>
Falls Church, VA USA
Thursday, January 07, 1999 at 01:25:51 (EST)
Haven't had 2 consecutive nights sleep in approx 3 years and have tried EVERYTHING
up to 1 month ago. My doc Rx-ed Methergine .2mg. Haven't had a headache in one month. If
and when they return I will look back at this past month with great memories of Mr.
Sandman. Good luck and Good night!
Mark <cactusdr@Extremezone.com>
Glendale, AZ USA
Thursday, January 07, 1999 at 01:00:16 (EST)
I am overwhelmed by the testimonials I have just read. My heart goes out to all of
you, and I can only say that we are all in great need of a miracle. I have been a sufferer
for the past 11 years. I have been prescribed everything from Inderol to Cafregot,
Wellbutrin to Ergostat. I am presently taking 50mg of Sumitriptan or the Glaxxo-Welcome
miricle drug, Imitrex. I have found that it helps, but seems to cause a frequency in HA's
to occur after the main attack. Maybe it's just my very active imagination. All I know is
the pain and the frequency are very real, and not imagined. I will keep all of you in my
prayers, and my main prayer will be that the good Lord has mercy upon us all. One activity
that has helped me to make it successfully through the attacks, are what we in Korean
martial art call Dan Jon breathing, or deep breathing exercises. When the attack begins,
or when one has the feeling that an attack will begin, start the Dan Jon breathing, which
causes the pratitioner to relax, as well as cause a higher concentration of oxygen to
enter the blood stream which in turn acts in much the way the O-2 treatment does.If I can
be of furthur assistance in providing more info on this ancient form of Bio-feedback
threapy, please e-mail me, and I will give you all the info that I have. We are all in
this together, and I thank God for this network of people who can be such a blessing to
each other. God bless, and Godspeed.
William C. Hamlin <sema@transport.com>
Newberg, OR USA
Thursday, January 07, 1999 at 00:51:13 (EST)
I have found that Imitrex (sumatriptan) 20mg nasal spray has been effective in
eliminating pain from cluster headaches with relieve occurring between 15 and 45 minutes.
Best of all, I do not usually have that "sore foggy head" feeling that usually
follows an attack. This has allowed me to continue to function at work or play in a normal
manner. I have tried several other drugs to combat the pain and try to prevent future
bouts. But this method has proven to work best for me. I am 38 now and have been dealing
with cluster headaches for approx. 20 years. Other methods I have had some success with
included lydocaine place directly in the sinus cavity and Inderal taken orally. But by far
the Imitex works better with few side affects for me.
George McCoy <Buckitis@aol.com>
Olathe, KS USA
Wednesday, January 06, 1999 at 23:51:42 (EST)
Although I wouldn't wish these headaches on my worst enemy, I was delighted to find
that there are others out there who can understand what living with cluster headaches is
like - and know that you are not crazy.
Fran Lambert
Massena, NY USA
Wednesday, January 06, 1999 at 19:10:09 (EST)
Reading the two accounts on the home page of this site brought tears to my eyes.
Tears not caused by the pain in the left side of my head but by the sympathy I have for
the writers. I'm 48 years old and have "suffered" for 30 years. One or two bouts
a year, 6 to 10 weeks per session, 2 to 3 headaches a day. Right now I'm in week four of
my current cluster. I live on Verapimil, Ercaf and lidocaine nasal spray. Forget the not
to exceed dosage. I'll take it till the circulation in my fingers and toes is completely
gone if it lessens the pain. It's very comforting to read the accounts of other suffers
and know I'm not alone. Tonite as I pray to the Lord that he gives me a decent nights
sleep, I'll include each and every one of you. Hang tough.
bob pahlow <rpahlow@calpoly.edu>
San Luis Obispo, CA USA
Wednesday, January 06, 1999 at 13:23:17 (EST)
I'm 78 and have suffered with cluster headaches since I was around 31 years old. In
the early days, doctors didn't seem to understand them. There was little one could do but
suffer. If I had not been a Christian and had a family, I would never have reached 40.
Then one night I got so mad that I ran up this steep hill behind my house. When I reached
the top, I noticed that the headache was gone. I've been running that hill for 25 or 30
years whenever I get a cluster headache, and it works. Now, I am thankful to my VA doctor,
Barbara L. Murphy, at the VA Clinic in Sayre, PA., where I went at the onset of my last
season of headaches. She put me on the right dosage of Prednisone, and I didn't have to go
through the whole season. I have gone as long as two years between seasons. But usually I
have one or two seasons of headaches a year.
Elwood G. Ellis <forbestj@hotmail.com>
Towanda, PA USA
Tuesday, January 05, 1999 at 21:10:51 (EST)
Wow! I'm amazed to read the messages and see the exact same thing I've been
suffering with for so long put in the same words. I'm amazed and for some odd reason happy
to find someone who can relate. My husband was some what relieved to see that other
spouses go through what he does.
Suzanne <aminozen@midwest.net>
Il USA
Monday, January 04, 1999 at 15:13:49 (EST)
I'm just looking for cluster headache sufferers in the Baltimore/D.C. area-- is
there a local support group to which I can refer patients from Hopkins who are in the pain
clinic?? Please e-mail me if you know. Thanks.
Richard S. Vax, M. D. <rsvax@aol.com>
Baltimore, MD USA
Monday, January 04, 1999 at 10:21:18 (EST)
I have suffered chronic clusters for over 12 years. They started off 2 years apart
and lasting for 3 months. Remission periods became shorter over the years to the point
where I only get a couple of months without and then 6 months to a year with them again.
Booze and sleep are my main triggers for attack. I do not drink during cluster periods but
still get nightly headaches. If I take preventive drugs (DESERIL) attack will occur the
following day. Oxygen works 100% but not always accessable. Does any one know what
chemicals(don't know if this is correct term) our bodies produce as we fall asleep. I
believe this is main trigger, any thoughts???????????
Mark OBrien <mark181@bigpond.com>
Canberra, act Australia
Monday, January 04, 1999 at 05:21:55 (EST)
43 yrs old, have had episodic clusters for about 12 years. mine seem to come every
year in late fall or early winter. thank God for oxygen. reading your site has been very
interesting and informative. I have tried lithium with little or no success. I travel a
good bit and have had no luck in getting airlines to allow me to take my oxygen with me.
That is pretty scary and has caused me to cancel some important meetings in the past. I
did not know about prednisone as a possible aid, and i have taken that in the past for
some other problems. thanks, ken
Ken Smith <k1207@bellsouth.net>
hopkins, s.c. USA
Sunday, January 03, 1999 at 12:44:00 (EST)
Let's hope they find a cure for this REAL SOON!!! All fellow sufferers have my
deepest sympathy! Mark
Mark Hughes <markhughes@hotmail.com>
Wirral, UK
Saturday, January 02, 1999 at 10:04:44 (EST)
Thanks!
Tom Smy <tjs@doe.carleton.ca>
ottawa, ont canada
Friday, January 01, 1999 at 20:49:12 (EST)
35 years old now. Don't know what "remission" is. 15 years of at least 1
cluster headache a day. Usually 2 or 3 a day every day since I was 20 years old. Taking
Calan SR 3 times a day. Tried Lithium, felt like I was constantly on an elevator going up
and down floors. Taking 3-6 Ercaf a day , 2 tablets at onset and one 15 minutes later.
Tried prednisone but the prescription was ridiculous. 10 on the first day down to 5 by the
5th day. I was taking it constantly. How come I don't get a "remission"? Oxygen
helps but so does breathing regular. Use to be a humorous and social person now I just
want to be evil. Any suggestions on how to get rid of this incredible pain? Refuse to put
a gun to my head......Thankyou.
dave <davedrum@eznet.net>
rochester, ny USA
Friday, January 01, 1999 at 20:00:49 (EST)
i am 48 yrs old. was in remission about 4 years, started again New years eve.1999.
last onset was new years day 1992. great site load of help.
marty <houseof2@aol>
baldwin, ny USA
Friday, January 01, 1999 at 13:25:18 (EST)
Finally found a doc to treat the pain while accupunture and various other methods
are initiated. So expensive- am borrowing money from a saint. Have been huffin' that
oxygen for years when I can afford it- it does bring some relief- if I catch it early
enough. I get panicked, desperate, and headachey when the tank gets low, and I rarely have
cash to fill it, so it's about as helpful to me as the other stuff. Speaking of which-
some of you have exspressed concern that we read the labels- I know the risks and accept
them- in the years prior to that awful drug I felt that the alternative to this hell was
death. Since stadol(and oxygen) I have control over the pain and venture out more. It's an
easy choice to make, especially since I didn't have withdrawal symptoms when I ran out of
meds last week. Respectfully Yours, M HAPPY NEW YEAR EVERYONE !!!
miranda <mmalcolm@hotmail.com>
albany, ny USA
Friday, January 01, 1999 at 04:34:42 (EST)
