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
Finally!
Mark Rosentthal <mrosen@ridgecrest.ca.us>
Ridgecrest, CA USA
Wednesday, September 30, 1998 at 20:32:53 (EDT)
anyone who wants to talk about cluster headaches feel free to e. mail me anytime.
good luck paul r.
paul j robare <pjsrocks>
south euclid, oh USA
Wednesday, September 30, 1998 at 19:05:50 (EDT)
I've been a Cluster Haedache sufferer since 1983. My cycle has been every 4 years
for about 12 weeks. I'm about a week into one now, but this time it's been five years
since my last. Yesterrday was a bad one. I had three attacks. In the past, Ergomar has
been helpful for me, but my doc has me on Imitrex and Amerge this time. Imitrex seems to
work well, not allowing the attack to gain to full intensity if I catch it early enough.
However, I remember the Ergomar to have some residual qualities that the Imitrex doesn't.
This is the first time I've had more than one attack per day. I am concerned over taking
too much medication. The intensity of the pain and the pshycological uncertainty of each
day is already taking it's toll on me. And I've got many weeks to go. Thanks for this
outpost.
Tom Urushitani <Tom.Urushitani@Prodigy.net>
Portland, OR USA
Wednesday, September 30, 1998 at 18:14:13 (EDT)
in the last two months i have been diagnoised having bipolar disorder and just this
week cluster headaches ican,t function at work peaple look at me like i,m crazy and my
family doesn,t know how to help.
paul j robare <pjsrocks>
south euclid , oh USA
Wednesday, September 30, 1998 at 16:57:29 (EDT)
im a 30 yr male and just recently started getting CH's. the doc put me on verapamil
180mg per day. i'm glad i found this site and look foward to chatting to get more info.
The pain sucks but since i've started the meds i only get one headache a day usually after
i get home from work.
greg <gecko77@aol.com>
augusta, ga USA
Tuesday, September 29, 1998 at 20:17:18 (EDT)
I have suffered for c. ten years now; clusters two or three times/year. Have been
treated with prednisone and lithium with little effect; recently got an oxygen tank...and
it actually worked!!! Unbelievable...I actually got back to sleep last night with no pain.
Rick Ackerman <sontron@erinet.com>
Germantown, Oh USA
Tuesday, September 29, 1998 at 11:41:21 (EDT)
Here it is again, once my favorite time of year, now my worst. My cluster episodes
are at full force and predictably will last at least another 2-3 weeks. Mine occur
normally at midday and after I fall asleep both lasting 15 to 30 minutes. I've had these
for as long as I can remember, but now that I am older they seem to only occur in the
early fall. When I was younger (high school age) they occurred in the late summer. My
paternal grandfather was a sufferer for years. His were mot likely triggered from smoking
and drinking. He died of liver disease in '77 when I was 7. I am not a drinker or smoker
to nearly the extents that he was but I tend to believe that genetic makeup may be causing
these terrible headaches. I am taking nose drops prescribed by my pcp but I am not
convinced that they are helping me any. He tells me take them the moment I feel one coming
on; thats great as long as your not sleeping, but what about when terific pain wakes you
out of a dead sleep? When this happens I tend to gravitate to the living room, lie in the
fetal position and place my head on afghan on the floor. Still nothing helps.
Mike Brown <mike.brown@chamber.state.ny.us>
Albany, NY USA
Tuesday, September 29, 1998 at 11:38:21 (EDT)
I have found the only relief in 14 years when in cycle is exercise . Drugs only work
for short time. Tylenol Synus works very well if you get the cluster at the beginning.
What ever you do "do not sleep too much " . This sleeping because of heavy
medication keeps the migraine cluster stimulated . Whatever it's caused by the biggest
relief is the ability to breath through the nose . I find it very difficult to believe in
this age we cannot find a cure or at least a known prevention .I hope i have helped some
of my cosufferers .
gdickie
brockville, on canada
Tuesday, September 29, 1998 at 09:54:45 (EDT)
what a wonderfully informative web site! thank you! it's kind of a scary thing to
have, since you can't see your brain to make sure it's okay. i've known for years that
it's cluster headache, but it's hard not to think "brain tumor", especially
during an attack. thanks for all the great and helpful information!
mary p rodgers <rodgersmp@aol.com>
washington, dc USA
Tuesday, September 29, 1998 at 00:23:29 (EDT)
The first one was so bad that I thought I might have been shot. I have been up since
10am yesterday. It is now 7:30pm. The pain has been there constantly, but not quite
reaching that horrible peak. I know it will happen sooner or later, but untill it does, I
do not think I will be able to sleep. The first doctor I saw was usless, he barely knew
what a cluster headache was. I see another doctor the day after tommorow. The Darvon I
take for my back pain does not even effect this pain.
James Drissel <kd5dac@aol.com>
San Antonio, TX USA
Monday, September 28, 1998 at 20:23:34 (EDT)
37 yo male. Been having Clusters for about 6 years. One or two cycles of 4-6 weeks
per year. Usually during the late summer or early fall. I've been taking 500mg Magnesium
and 350mg Feverfew per day for the past year or so. My current cycle is MUCH less severe
than at any time in the past. The headaches are only lasting about 20 minutes and are able
to be aborted either by taking a warm shower or stepping outside to breath cold air. It
still takes 100% concentration to "make them go away". It's tough to explain but
I can usually make them go away (unless too severe) by concentrating on them.
Bob Carkeek <bcarkeek@tfmg.com>
Renton, WA USA
Monday, September 28, 1998 at 15:17:25 (EDT)
I had my first attack approx. 2 years ago. I was first diagnosed with Virtigo, ( I
hope I spelled that correctly), and was told that my illness was stress induced. Out of
desparation, I believed them. On July 15th. of this year, '98, I experienced my second
attack, and again was told that I was stressed out, etc. I would did not agree with this
diagnosis and was seen this past Saturday, 9/26/98, by a Nuerologist, and was diagnosed
with having CH, and was given Amitryphiline. This is really an overwhenling illness, and I
pray that God will intervein quickly. Also, my question to all of you who are CH
sufferers, how do you manage your work scheudles when this attack is on the rise? Are you
boses aware of your conditions? Any help that you can give me would be greatly
appreciated. Thanks a million and my prayers are with you all.
sharon B-loreus <butlersh@vntscex.volpe.dot.gov>
Boston, Ma. USA
Monday, September 28, 1998 at 14:27:23 (EDT)
I suffer with Cluster Headaches and I would like to get as much info. as poosible
concerning the disease. I would like to especially find a way of preventing them from
reoccuring. Thanks. SBL
SBL
Boston, ma USA
Monday, September 28, 1998 at 13:25:17 (EDT)
I am new to the world of Cluster Headaches, having just diagnosed with my first
attacks. It is nice to know a place and people are here who can relate. I'm sure I will be
back.....
Dan <Danindenvr@aol.com>
Denver, CO USA
Monday, September 28, 1998 at 12:17:10 (EDT)
Thank you for the web page, I just found it a few days ago. 4yrs of chronic CHs, my
best streak was 1 week with out them. At the ripe old age of 38 now I fought off the tears
as I read post after post, knowing each of you has felt the same pain. Todd
Todd <rhemah@thevision.net>
Modesto, CA USA
Monday, September 28, 1998 at 12:16:42 (EDT)
I just found your page today and think its great. At least it gives me some insight
on what I have been dealing with all of these years. I have suffered from cluster
headaches for about 14yrs and have always thought that it was sinus headaches. The doctors
have just recently diagnosed me with this problem.
Curt Sheldon <kurtis@primenet.com>
Phoenix, AZ USA
Sunday, September 27, 1998 at 15:26:23 (EDT)
i dont know if i have cluster headaches but i have headaches daily. its been going
on for a year and a half now. sunlight seems to make it worse and the headaches are on and
off as the day goes on. the pain is always around my eyes. doctors tell me im healthy,
thought you may be able to help.. im 28 and a male. thank you.
charles <spardog1>
memphis, tn USA
Sunday, September 27, 1998 at 01:27:49 (EDT)
I am 26 years old and I've been suffering from cluster headaches for about 8 years
now. I found this site tonight and when I started reading over the entries I sat here and
cried. Finally, people that understand. It's been about a year and a half since my last
episode and I'm on about week 3 of this one. I've been taking all kinds of drugs, but
nothing touches them. They've been hitting me 2 or 3 times a day. They wake me up in the
middle of the night. The pain pills don't even work sometimes. They are always on my left
side. My eye runs, my nose runs, I cuss, I scream, I throw up, I cry, I hold my head and
rock, I completely freak out anyone who gets to witness one of these lovely episodes. No
one understands the pain. I've been missing classes, and work. There is no way to explain
this to someone and I sure as hell wouldn't wish this on anyone. The neurologist just
started me on an anticonvolsant and my oxygen tank is being delivered Tuesday. I'm keeping
my fingers crossed. My heart goes out to all of you. Please feel free to get in touch with
me.
Michele <ssimmons04@sprynet.com>
Chesterfield, VA USA
Saturday, September 26, 1998 at 21:04:54 (EDT)
Thank God I looked this up today. Then again, God didn't really do much when I asked
him to last night... I'm presently in my 2-3 week stretch of suffering. This time, though,
they're turning out to be all night affairs. I've never taken it up with a physician, but
my (then)girlfriend (who is a reference librarian) stumbled accross cluster headaches a
few years ago in analyzing my symptoms. I'm going to check more of this site to see about
info on pain relievers, treatment, etc., because I can't find a f---ing formula! Ya know?
But it's nice to know there are people who realize that, when I say I got 2 hrs sleep, I
WASN'T out drinking all night, that I WASN'T having sex all night, and that won't say
"Oh, sounds like a, uh, um, der, migrating headache. Ya sure, you betcha." If
anyone has any tips about pain relief ("swallow 2 Tylenol upside down with Cranapple
juice and stick 3 aspirin in your right upper gum, while rolling on the floor and chanting
ooommmm) my e-mail is listed. Till then, T.A.
Thom <tasoul@hotmail.com>
Fargo, ND USA
Saturday, September 26, 1998 at 17:16:53 (EDT)
I am not a cluster headache sufferer, but please keep reading anyway. My dear
brother suffered from these for 11 years. I witnessed horrific effects that they had on
his life, including depression, fear, anxiety, confusion, pain, frustration....well, I'm
sure you will all agree that this list goes on and on. It's so frustrating because no one
really knows how ba they really are-"Oh yeah, I had a terrible headache yesterday
too" My brother would just nod his head, knowing full well that he wasn't going to
even attempt to explain these phenominal headaches. Well, my brother took his own life in
this past May and my life will never be the same. I desperately want to help other
sufferers in any way possible, but am at a loss of where to even begin. This outcome does
not have to happen, so please realize that my brother had many other physical and
emotional ailments that contributed to his death as well. Anyway, I am open to any and all
suggestions. Please know that my concern and sincerity are genuine.
andrea <andrea_nan@yahoo.com>
USA
Saturday, September 26, 1998 at 15:43:25 (EDT)
Hurray!!!!!! I'm just ending a three month cluster period. I can't wait to go out
like a normal person and have a glass of wine to celebrate. (I don't drink at all during a
period.) I was delighted to find this site. I never realized that other people feel and
describe their clusters in the same words that I do. Isn't it funny that no one has
exactly the same experience, but we can all identify with each other. I've had clusters
for thirty years on an annual basis. They stopped for eight years in 1987 after I had my
first child. My husband and I considered it a gift from my daughter. But now they are
back. When I was in my teens at boarding school, these headaches were unknown, and people
thought I was faking or exaggerating the pain. At that time I got the headaches only at
night, waking me from sleep. Now they also come in the mornings. Over the years I've been
medicated with fiorinal in the 70's, sudafed and inderal in the 80's and now--sansert. I
think that sansert lessens the severity of some of the pain, but who can tell? For decades
I've been using ice packs in the most intense areas. It seems to numb the nerves in the
general area and gives me something to do while I'm moaning. There is also I spot on my
back that when pressed seems to affect the pain level. Sometimes my husband can abort an
attack by compressing this area. But sometimes touching the same spot makes me nauseous.
The most AMAZING thing about my headaches is that I can be in agony for 45 minutes and
then voila--it's gone!! Good luck to all who write on this site. At least we don't have
something fatal!!!!
Lee Canter <Lcanter1@msn.com>
Glen Ridge, NJ USA
Saturday, September 26, 1998 at 09:43:11 (EDT)
I want to know how you deal with this disorder.
Matthew J. Sabre <sabre@mail.a-znet.com>
n. syracuse, ny USA
Friday, September 25, 1998 at 19:00:42 (EDT)
I'll be visiting again, great information!
annemarie van ewyck <ave@cena.demon.nl>
The Hague, Netherlands
Friday, September 25, 1998 at 17:28:59 (EDT)
Cluster Headache sufferer
Ray Overton <roverton@novia.net>
Omaha, ne USA
Friday, September 25, 1998 at 14:55:00 (EDT)
My problem may or may not be cluster related.....however, it is nice to read the
messages. It gives me some comfort (and hope)
Don Reid <reid@webleicester.co.uk>
Leicster, UK
Friday, September 25, 1998 at 14:49:43 (EDT)
Just started another cycle and I thought of other people that are going through the
same nightmare. I figured someone had started a CH web-site but I finally sat down and
found it. I've been suffering for twenty three years now and have tried everything.
Nothing has helped me. I just am thankful for the support of friends and family. My best
wishes to all my fellow sufferers.
Pete Celestino <TMLump@ms23.hinet.net>
Taipei, Taiwan
Friday, September 25, 1998 at 11:00:17 (EDT)
thank you for the info.. If I could just make people understand how dibilitating
these headaches can make me. I yearn and long for understanding because I understand that
relief will never come for long periods.
tim wood
nashville, tn USA
Friday, September 25, 1998 at 10:25:22 (EDT)
thank you for the wonderful information. has been accurate in description of the
pain, duration, ect.
Tony Simms <huntere@iamerica.net>
alto, TX USA
Friday, September 25, 1998 at 09:28:55 (EDT)
I have a very dear friend that suffers from cluster headaches. I recently saw him go
through the acute stage ; I had no idea how bad it could be. I'm hoping to find out as
much as I can about these headaches and hope he can find some relief.
Melody <mkrameresq@aol.com>
Lincoln, NE USA
Friday, September 25, 1998 at 09:04:42 (EDT)
I am pleased to find this web page. Having suffered from Cluster Headache since
1983, I appreciate any information that might be helpful.
John W. Mac Millen <jmacmill@cub.kcnet.org>
Mill Hall, PA USA
Thursday, September 24, 1998 at 21:51:01 (EDT)
I can't express my gratitude for this site.I'm a 37 year old man who has just been
diagnosed with CH. They began 3 weeks ago and since then they've been a fairly reliable
nightime ritual of pain. Today was a banner day, one at 5am, again at 9am, then again at
830pm! I fear sleep! Does anyone out there also wake from deep REM (dreaming) with this
intense pain? How do you cope with working? I want my life back!! I have great support,
but this is taking a toll on everything/everyone that is important to me. Does anyone have
any bits of wisdom? Thanks, I hope you all have pain free days/nights.
Mike R <micandy@home.com>
Phoenix, az USA
Thursday, September 24, 1998 at 02:26:36 (EDT)
my son Dale has CH he has had them for 2 yrs he is 36 yrs. old we have tried so many
treatments and spent so much money to no availl.I am so glad I found this web site. I was
wondering if anyone knows how many people suffer with demon because there doesn't seem to
be much of anything new as far as treatment.Isn't it amazing that you can take a pill to
fix your penis but they can't fix a cluster headache. Looking for some answers Dale's Mom
connie engler <engler@lakeozark.net>
Lake Ozark, Mo. USA
Thursday, September 24, 1998 at 00:03:02 (EDT)
I am beginning to think that a .45 will fix my headaches and stuff.
none <none>
none, none USA
Wednesday, September 23, 1998 at 16:46:01 (EDT)
I am 29 years old and have suffered with Cluster Headache for 10 years although I
was only diagnosed 18 months ago. A fast and correct diagnosis is so important and could
have saved me a lot of pain. Since being diagnosed I have been prescribed Imigran
Injections which generally abort the attacks within 10 minutes. More recently I have tried
a low dosage of Verapamil as a preventitive which seems to stop the cluster in its tracks
quite quickly. I continue to search in the hope of one day understanding the cause of the
headaches and perhaps finding a cure.
James Frost <jfrost@tsorf.demon.co.uk>
Chelmsford, Essex, UK
Wednesday, September 23, 1998 at 10:37:05 (EDT)
I am not a CH sufferer but a friend and businnes associate of one. He has gone
chronic (5 months now) and is possibly suicidal. Needless to say, I want to help. Is
anyone out there taking a SSRI and, if so, comments?
barbara montgom <dsembodied@aol.com>
Tehachapi, CA USA
Wednesday, September 23, 1998 at 02:46:17 (EDT)
Thank God I found this site. I usually try to keep the pain to myself, but those
around me see it in my eyes and body. I have been having the headaches for almost 3 years,
since I was 21. They never seem to go away, no matter what I do. I'm lucky if I can go a
week without one. Generally mine start to get bad in the early afternoon. Once a week or
so, I wake in the middle of the night sweating, sick to my stomach, and virtually no motor
control on the left side. Pain is almost exclusively in the right hemisphere, and my whole
left side trembles during these night attacks. I can't lay down or sleep, I have to keep
moving, allbeit slowly, until I find that one way of sitting or standing that eases the
pain just a bit. I don't wish this on anyone and feel terrible for all the rest of you
that suffer with it.
Frank Rizzo <ezlife@mailexcite.com>
Modesto, CA USA
Wednesday, September 23, 1998 at 01:38:54 (EDT)
This is a very well organized, highly informational site.
Joshua Campbell <jwcampbell2@yahoo.com>
Lakeland, GA USA
Wednesday, September 23, 1998 at 00:12:40 (EDT)
Hi! i have suffered for to many years to count!! my pain gets so bad I cant help but
become very UGLY my poor husband trys to help but the more he tries the uglier I get. dose
anyone elses head acctually swell at the base of their head? thanks for letting me
read&vent.
darlene guerra
buffalo, mo USA
Tuesday, September 22, 1998 at 02:59:25 (EDT)
Where is the September message board??
Mrs. Troppo
CA USA
Tuesday, September 22, 1998 at 02:43:31 (EDT)
I have had CH for since I was 17 and now I'm 48. I have been on CORGURD and a lot
more and nothing seems to work for very long. Still looking for a good Doctor that can
help.
Michael D. Wilson <kingler1@pacbell.net>
Cypress, CA USA
Monday, September 21, 1998 at 20:48:36 (EDT)
Thanks for creating this wonderful site. I have been searching for information and
new treatment. My cluster headaches began when I was 17 and in the Army. The next four
years, I was treated for sinnus, tension headaches. It took most of my savings and test to
be told that I had the dreadful cluster. In some ways I am lucky and then again maybe not.
I am in luck, because for the past 7 years my clusters come on every other year until now.
I have been using Verapamil at 240mg, Amitriptyline 25mg, Lidocaine Viscous, and of course
Imatrix 25mg tblts, or injection. I really have no idea if all this stuff really works,
because due to the nature of this beast it can go into remission very quickly, or last for
an exteneded period. I did notice with the Imatrix that when using the injection would
break up the cluster almost instantly. The down side was that, and I could set my watch by
it, but when the 6 hr were up the dreaded beast would come back twice as bad as it was
before. Also like most of you I do not like having to take medicine unless it is
absoultely possible. My VA doctor is treating with some unlikly medicine. For example the
Amitriptyline, which is an anti-deppression and the Lydocaine, which I use as an
inhailent. At times this will break up the cluster before it starts, like when the early
warning signs that each of us have letting us know that the beast is on it's way.
Amitriptyline makes it so that I am always tired in the morning, which is a pain since I
am a morning person. Like each of you the stabing and throbing pain is something none of
us can forget just thinking about it sends shivers up my spine. Once asked how bad a
cluster cycle was I proceded to expline to this intern who was sitting in on my case. Try
living a normal life with a stabbing and throbing pain lasting from 30 min. to over 2 hrs.
This would take me to the point all I wanted to do is smack things against my head hoping
beyond hope that something will make it go away. Now take that times 5 to 6 times a day
and lasting from 2 days to months. Then I proceeded to say if you can not get a picture of
it yet, then think of the worst pain and that would not come close to a cluster headache.
I once told a friend that I would not even wish this type of pain on my worst enemy. I was
wondering does anyone have any other treatments? I fear that my current regimine is
begining to fail and my doctor is hesitant to perscribe the Lithium treatment. If anyone
can help the information would be greatly welcome.
Felix Obra <fro70550@cmsu2.cmsu.edu>
Warrensburg, Mo USA
Monday, September 21, 1998 at 19:32:27 (EDT)
Glad that i have found you,its lonely in hell,which is where I feel Iam most of the
time. I have had this for thirty years,and come near to ending it all many times,thank GOD
for my wonderful wife.KEEP UP THE GOOD WORK
Roy E dward COLLINS <rcollins@paston.co.uk>
downham market, U.K.
Monday, September 21, 1998 at 16:08:18 (EDT)
I have suffered from cluster headaches for nearly 25 years.For the first decade I
had virtually no periods of remission and suffered 2 to 4 attacks a day.It was not until
1982 that I was diagnsed as a sufferer, I had previously been treated for sinusitis and
then migraine, approximately 10 years!What I did discover was that very cold water and/or
ice applied to the affected area could abort attacks or at least give some relief.Since
1982 when I eventually got to see a Specialist Neurologist and began treatment with
Lithium I have enjoyed longer periods of remission, often 1 to 2 years.The downside is
that I occasionally experience an attack which lasts for the standard 45 minutes but the
pain only subsides to a lower level and continues for anything up to 48 hours.There
doesn't seem to be anything that helps and sleep is almost impossible.Any advice?All
suggastions gratefully received.
DAVID G LEMON <DAVIDGLEMON@msn.com>
Aylesbury, Bucks UK
Monday, September 21, 1998 at 15:19:57 (EDT)
In third year of seasonal suffering. Happens in late summer early fall and last for
4+ weeks. Pain is constant with just a variation in intensity.
Jeffrey van Brunt <jvbcoach@aol.com>
Salt Lake City, UT USA
Monday, September 21, 1998 at 14:38:31 (EDT)
Does anyone know of a good physician/neurologist in the York/Lancaster/Harrisburg
(PA) Area that has a good working knowledge of CHs? My neurologist seemed to be familiar
and diagnose them properly, but his treatment options were very limited and lacked
innovation. Therefore I pretty much just suffer. Has anyone tried chiropractic. It
appeared to help me through my first stint of CHs 1 1/2 years ago, but it could have been
coincidental. Chiropractors also keep odd hours, tending to be inconvenient to my CHs. I
need some options. I have always had headaches, but since getting CH extra strength
Excedrin just doesn't cut it anymore. If anyone can help with my questions please e-mail
me ASAP. Thanks.
Corky Cooper <ECOOPER@GLATFELTER.COM>
YORK, PA USA
Monday, September 21, 1998 at 13:14:19 (EDT)
MY HUSBAND has had the dreaded monster headaches since age 14. we have both learned
a lot from this site. even though i am a nurse, i have only seen 1-2 other cluster
sufferers where i work in the past 13 and half years.
DIANNA <DOK@AOL.COM>
ST.PETE, USA
Monday, September 21, 1998 at 10:08:11 (EDT)
I had my first bout with cluster headaches in April 97. My first occurrence was 34
days of straight intense pain. I still suffer occassionally, mine is accomanied by very
intense optical pain. I saw a neurologist who diagnosed me, but I have not been able to
get relief from any treatment. I usually just have to wait it out. Thank you for this
information, some of it is as if I wrote it myself. I want to investigate some of these
treatments. My neurologist said that these headaches can occur in people that have had
nose injuries. I have a deviated septum. This may fit in with the remedy of oxygen. I may
not be getting enough oxygen at times (I only have flow in one nostril). I also have sleep
apnia that may play a role. Thanks again for the info, it has given some hope.
Corky Cooper <ECOOPER@GLATFELTER.COM>
YORK, PA USA
Monday, September 21, 1998 at 09:33:01 (EDT)
I'm suffering since 32 years. I'm 52 years old. I would like do correspond in
german. Is there somebody who speaks german and suffers from cluster? (sorry, my english
is not so perfect.)
Stanek Walter <bamert_ag.uster@bluewin.ch>
uster, zh switzerland
Monday, September 21, 1998 at 07:58:12 (EDT)
Hi,Thanks for getting this site up and running ,I am a chronic sufferer myself.I
shall be back (when i get used to my computer that is). Reguards Rick Newing.
Richard Lawrence Newing <rnewing@sun.big.net.au>
Buderim 4556, Qld AUSTRALIA
Monday, September 21, 1998 at 01:00:49 (EDT)
Hi, I am a 57 year old male - had my first cluster attack 3 years ago. Seen a
neurologist, he diagnosed it as cluster tic so lucky me got both. Tegratol shut it down
for 2.6 years. Then in Februray of this year they came back. I was taking 600mg a day and
increased to 1200mg but no relief at all. Had surgery on the Trigeminal nerve in
May...have a sunken spot in my skull in back of my right ear but still didnt fix the
problem. Caffergot has been my main standby but they still get through quite often and I
have to be careful and not take too much of the Caffergot, I have and its not pleasant.
Read a message from clusterheadaches.com about a guy taking Varapamil. Went to my regular
doctor and had him let me try it. Taking about 480 mg a day and still take Caffergot also
and it just barely keeps the monster away, not complaining (grin) but it does keep a guy
on edge. I have tried everything from oxygen to freezers...all work for a while...just
wanted say the freezer worked real good if I could stick my head in and start breathing
the cold air immediately. Anyway just wanted to pass on my experiences, hope the best for
everyone...someday
Stan Baker <doggie@flash.net>
Mesquite, Tx USA
Sunday, September 20, 1998 at 20:50:10 (EDT)
Not even sure if they are Clusters. Doctors have diagnosed lots of different things.
I've got migraines, sinus headaches and just plain stress. Been going to doctors for 15
years and not one has given me an accurate reading. Recently decided to ditch all the
drugs and go for more natural substitutes. Chiropractic and massage therapy helping much.
My sympathies for all of you. Maybe if we knew what these actually were, we could actually
cure them. I still have hope!
Cherie Tennen <tennen@gachamber.org>
Atlanta, GA USA
Sunday, September 20, 1998 at 08:43:52 (EDT)
thanks for this site. just want to "vent."have had clusters from age 17 in
1964 to 1990. yearly cycles lasting 3-4 months. have tried lots of drugs like sansert and
ergomar but over the years decided drug side effects were worse that the pain...at least i
knew what to expect with the pain...8 year remission from 1990 to present. headaches now
are less intense, less severe than when i was younger. also i am peri-menopausal so maybe
it's a hormonal thing now. thank for listening... dori
doreen lavin <dlavin@pop.we.mediaone.net>
los angeles, ca USA
Saturday, September 19, 1998 at 14:37:49 (EDT)
I would like to hear from other suffers. Have had cluster headaches for about l8
years, began in my 30's. Any support groups, new meds? new research? diets? Thanks, David
David Schwartz <BTP73SA @ AOL>
Cleveland, Oh USA
Saturday, September 19, 1998 at 07:58:09 (EDT)
I have su;ffered with Cluster Migraines for 20 years and I am interested in chatting
with other Cluster sufferes.
Don Van Riper <donvanriper@compuserve.com>
Farmington, NM USA
Friday, September 18, 1998 at 22:25:16 (EDT)
I've been suffering from what I think are cluster migraines for 14 years now. I at
times am not sure if they really are even though a neurologist diagnosed them as clusters.
The pain seems to concentrate in my jaw while a specific episode is receeding and the
nerve at the base of my skull gets so touchy that if I have my head positioned in just the
wrong way, it sets of a headache of pain I can't even begin to describe. The headache is
one one side of my head only and includes light sensitivity, pain over the top of my scalp
and temple in waves, sinus shutdown, throbbing nerve at the base of my skull and finally
excruciating pain in my jaw, but no nausea. If there is anyone out there who knows these
symptoms as a cluster migraine, please help me by confirming!
mike ramey <northberg@aol.com>
monroeville, pa USA
Friday, September 18, 1998 at 21:35:16 (EDT)
I am 34 and have suffered from what I now know are cluster headaches since I was 16.
When i was single and worked in a nightclub, my treatment was to drink until I passed out.
When I started a family and a new career about 6 years ago, I quit drinking and would take
as many as 16 OTC pain relievers in an hour to dull the pain. I constantly listen to my
wife tell me how lucky I am not to have migraines. She was diagnosed with minor migraines
about two years ago. At the same time I finally went to a doctor and was told I had a
sinus problem. he gave me Claritin-D, but of course that didn't help. I discovered exactly
what I had via the web last year after my annual attack. I recently spoke with another
doctor who told me that they do not prescribe anything for cluster headcahes and then
proceeded to eloquently display her ignorance about them. My episodes usually begin in
late summer or early fall and last for about 6 weeks. They last anywhere from 1 hour to 12
hours.They come on every night about 1 hour after I fall asleep, no matter what time I
fall asleep. The worst part is laying there half asleep thinking that this is a wierd
dream and then sitting bolt upright as the first pulse reaches a crescendo. In addition to
the nightly ones, I get one in the afternoons about 2 times a week. After I get one at
night it is usually morning before it is gone and I am afraid to fall asleep at night
knowing that I will be up in an hour. Last year I thought I had escaped them, but they
were just late. October 20 thru December 12 and the most intense and painful ever. Two
years ago was the only time I ever had two periods of clusters. I have banged my head on
the wall and beat it with shoes. I have fantasized about drilling a hole in my head to
relieve the pain. I have thrashed around moaning in bed. Finally I know that I am not
overreacting and that it really does hurt as bad as I think it does. If I can't get any
action from my doctor this year (my attack is due any day now and I have already begun
avoiding sleep) I will besiege him with printouts of this and every other bit of
information I can find on the web.This is a fantastic site and thank you.
Jerry Gramling <jgcne@erols.com>
Virginia Beach, VA USA
Friday, September 18, 1998 at 13:41:30 (EDT)
I am female and was diagnosed today with CH. Thank you for the work you've put into
this website, it has been very helpful...although somewhat distressing...may you all find
"relief"!!
kelly <kelly@zion.net>
charlton, ma USA
Friday, September 18, 1998 at 12:40:00 (EDT)
10 years with migraines from a motorcycle accident. Still looking for that magic
bullet
rob wolpert <rob.wolpert@eds.com>
Plano, tx USA
Friday, September 18, 1998 at 11:08:01 (EDT)
Well. Glad to see I'm not alone. I'm 38 and I'm suffering CH from 1983, in a quite
rare form, as it is chronic. (Every day a CH, with picks during August-October period with
at least five or 6 "terribles" attacks a day....) Keep maintaining this site,
with news on research or new medicine... Could be great to be rid off this pain. My best
regards for all of you, from Paris, France.
Olivier Bernaud <olvier.bernaud@usa.net>
PARIS, France
Friday, September 18, 1998 at 04:58:20 (EDT)
New weapon? Just emerged from a blissful 2-year remission and am now under seige
again. To my arsenal, I've added the following which I unholster at the first hint of a
CH; 4 Advil liquid gel caps washed down with a cup of very strong coffee, drunk quickly.
Pretty effective. Reduces a 50-minute skirmish to 10. Good luck.
Tracy G. <tgor@webtv.net>
L.A., USA
Thursday, September 17, 1998 at 22:17:38 (EDT)
I'm glad I found this website. On a whim I did a search when my latest bout began,
about three weeks ago. I've been experiencing cluster headaches for about 14 years now. I
just turned 40. I hadn't had any for a couple years and thought maybe they had passed.
Wrong. Most occur at night although I had one at lunch today. Being an active duty service
member, I haven't received any treatment over the years. Even though they finally
diagnosed it as CH, they didn't believe there was any treatment or medication. Therefore,
I would just "suck it up". I'm encouraged by the information presented in this
web site and will be seeking treatment and (hopefully) some relief. I've never met anyone
else with this condition, so it was great to discover that I'm not alone. Good luck to
all; no one deserves this pain.
Jim Roberts <roberjl@crosslink.net>
Dahlgren, VA USA
Thursday, September 17, 1998 at 18:40:19 (EDT)
headaches are so bad I can't remember if I filled this out before or not. It really
affects all my thinking. Have had these damnable C.H for 9 yrs. now and it feels like 90.
What a horrendous way to live.
Linda Howell <Calientev8>
Red BLuff, Ca. USA
Thursday, September 17, 1998 at 17:52:20 (EDT)
Only been suffering for 7 years now. Seems like so little compared to the others on
this site! Thanks for Building this site, it's nice to know I'm not alone. It's also nice
to know that this horrible pain is not just an imagination, or an intolerance on my part.
Art Strobl <Art.Strobl@bridge.bellsouth.com>
Frankfort, KY USA
Thursday, September 17, 1998 at 16:50:55 (EDT)
I happened upon this site today and almost cried while reading "A day in the
life..." on the home page -- it was that very scene last night (and the night before,
etc...). I'm on week three of the lastest bout and will be scouring the whole site for all
fellow sufferers stories and copings. Thank you to those who started this site!!!
Steven K. Moorhead <moorhead@hughes.net>
Rosamond, CA USA
Thursday, September 17, 1998 at 02:07:01 (EDT)
I've had clusters for the last 11 years, though with increased frequency since
moving to Santa Barbara. I am inclined to believe that allergies may have something to do
with the increase. I have used prednisone and sansert to keep the clusters largely at bay.
Sometimes they break through - as one did the other night while out on a trail run with my
girlfriend. After thrashing around in the dirt for about an hour, the headache went away
but for the remaining facial pain, and we had to pick our way down the rocky trail in
pitch black. In this latest cycle, each trail run I take ends in either an almost cluster
or a full-blown thrashing, head-banging, swearing. This pattern along with my Santa
Barbara-derived allergies leads me to believe that dropping below some threshold O2 level
brings on an attack. I've contacted my neurologist to request an O2 tank and mask. The
thought of a home tank makes me squirm - I am an active outdoor athlete and to me home
tanks are synonymous with aged smokers. Thanks for the web site!
Thomas Painter <painter@icess.ucsb.edu>
Santa Barbara, CA USA
Wednesday, September 16, 1998 at 16:19:58 (EDT)
I'm a physician in Chicago who has been suffering with clusters for over 12 years
now. Wonderfull to find such a group of people...I can't wait to join your discussions.
Feel free, any of you, to email me with medication/treatment questions. I don't have all
the answers, but I have some...and a very sympathetic ear. docgreg@bigfoot.com
Greg Hill, MD <docgreg@bigfoot.com>
Chicago, IL USA
Wednesday, September 16, 1998 at 14:17:14 (EDT)
Been having CH since I was 20 yrs. old I get them every 2 to 3 yrs. episodes last 3
to 4 weeks with 3 or 4 attacks a day that usally last 45mins. I`m 39...... good luck to
all
G Martinez <sftbal55@aol>
Houston, Tx USA
Wednesday, September 16, 1998 at 01:00:51 (EDT)
HELP! Any other women our there?
Kathy Engle <ABJKENGLE@aol.com>
Loveland, CO USA
Tuesday, September 15, 1998 at 23:08:20 (EDT)
This WEB site is real life saver. It helps not only body but also the soul. Thank
you for taking the time to put this WEB page together.
Douglas Rock <rock@quickturn.com>
Plano, Tx USA
Tuesday, September 15, 1998 at 13:59:09 (EDT)
I'm a 28 y/o doctor who has been a chronic suffer for 12 years. I am anxious to join
the support talk chats.
Dr. Matt Cerniglia <drmboo1@aol.com>
beaumont, tx USA
Tuesday, September 15, 1998 at 13:20:29 (EDT)
I was just diagnosed with cluster headaches. Thank you for such a informative
web-site. It's comforting to know that there are others suffering from cluster headaches.
We thought we were alone.
JMusso <mkmusso@hotmail.com>
Alabaster, AL USA
Tuesday, September 15, 1998 at 11:11:30 (EDT)
interesting
woody <wgraham@nbnet.nb.ca>
st. stephen, nb canada
Monday, September 14, 1998 at 20:42:12 (EDT)
I've had cluster headaches every year since I was 17 years old (I'm now 42), except
when I was pregnant - then I had a couple of classic migraines. I've tried for the most
part to stay away from drug therapy, and am still seeking alternative treatments (I'm
currently trying craniosacral therapy to see if it works). My cycle varies as to time of
year, but generally lasts about 3 months and I get anywhere from 1 headache per day to 3
per week; the duration anywhere from 1 to 4 hours (although I've had a couple that lasted
12 hours!!). I do find that ice packs on the top,side and back of my head temporarily
reduce the intensity (saves banging my head against something), and I have had luck with
oxygen a couple of times. I have also had great success twice with Reiki.
Heather Turner <hturner@cableregina.com>
Regina, Sk. Canada
Monday, September 14, 1998 at 11:01:35 (EDT)
Any help with these headaches would be GREAT!
Jeremy Curtis <jscurtis@hotmail.com>
Huntsville, AL USA
Monday, September 14, 1998 at 11:00:30 (EDT)
I am glad that I am not alone!!!!!!!!!!!!!!!!!
Ben <ELSocket@aol.com>
Detroit, MI USA
Sunday, September 13, 1998 at 12:11:37 (EDT)
This is my second series of Cluster Headaches. The first was 25 years ago!
Gerald Datlow <allex@netkonnect.net>
Silver Spring, MD USA
Saturday, September 12, 1998 at 22:45:11 (EDT)
Unbeleivable!! I've never met anyone else who has clusters, so this site somehow
makes me feel better.I've had yearly episodes for 23 years and can honestly say: "God
have mercy on us. PLEEZ!!" If only everyone would experience just one.....they just
don't understand! This is NOT a head "ache"....feels like a head injury.Every
year I think I can't take it again....but we always do, don't we? Hang in there
folks.....don't EVER give up!
Don M. <magk9@bright.net>
Antwerp, Oh USA
Saturday, September 12, 1998 at 14:28:25 (EDT)
As a sufferer from cluster headaches I appreciate this site with all this
information
Guy Debie <GuyDebie@village.uunet.be>
Mol, Antwerpen Belgium
Saturday, September 12, 1998 at 10:57:35 (EDT)
Its good to see a place where others can understand what I am going through...as I
understand what all of you are also going through. Thanks for being here
Rich Saltz <AAWH70A@prodigy.com>
Parlin, NJ USA
Saturday, September 12, 1998 at 08:21:03 (EDT)
Thank you for this site. I have gained alot of information as to what I am going
through. I was first diagnosed with CH about 6 years ago and then they quickly disappeared
as quickly as they came. The doctor told me then that it was simply due to stress. After a
five year remission they once again try to devoure my mind and body, but thankz to this
site I can conquer them once again with a little more knowledge. Thank you so very much.
Ken Altman <Dedlypoet@prodigy.net>
Dallas, Tx USA
Friday, September 11, 1998 at 22:37:42 (EDT)
Chronic Cluster sufferer for past 10 years. Glad to have found you
Robert Sobel <robsobel@wt.net>
Houston, TX USA
Friday, September 11, 1998 at 10:59:35 (EDT)
I am so thankful that I have finally found you site. I don't have headaches of this
type but I have a friend who has been told that she has cluster headaches and she ask me
to get info for her.
Criste Reimer <cudlypoo@swbell.net>
Kansas City, MO USA
Thursday, September 10, 1998 at 22:01:21 (EDT)
It was my roommate that discovered I had cluster headaches when he found me stark
naked pounding my head on the kitchen floor in the wee hours of the morning. I really
don't remember much about THAT nite but I remember all the others episodes since! I'm
thankful for this site and will be a frequent visitor.
John Thom <johnthom@gofast.net>
Minneapolis, MN USA
Thursday, September 10, 1998 at 20:59:12 (EDT)
just stopping by to check on whats happening...have made previous entries...been
cluster free since july...staying on low maintenence drug amount to be on the safe
side...glad to know we'll not alone.
mike <meezee@aol>
ny USA
Thursday, September 10, 1998 at 19:30:40 (EDT)
Hi, did not realize there were this many of us Thanks
Tom Adams <tomladams@usa.net>
Benson, Az USA
Thursday, September 10, 1998 at 13:26:23 (EDT)
I have Suffered from cluster headachs since I was 20, I am now 26. I cant wait to
chat with some of you. Peace, Paul
Paul Ames <dames2@roanoke.infi.net>
Salem, VA USA
Thursday, September 10, 1998 at 00:16:24 (EDT)
I have Suffered from cluster headachs since I was 20, I am now 26. I cant wait to
chat with some of you. Peace, Paul
Paul Ames <dames2@roanoke.infi.net>
Salem, VA USA
Thursday, September 10, 1998 at 00:16:21 (EDT)
Dear Sr. I reeded the document, but I'm very sorpeised that my trattement for my
CLUSTER-HEADACHE I do not see there, I recieve a very succesful tratement with: CAPSAICIN
, dropped into the nose, of course together with the Oxigen in the attak and ICE in the
thruogth the vens in the pain side (in my case the Right) I'll very happy to apport of my
long experience to your WebSite. Alex Perez Israel.
Alex Perez <ape@isdn.net.il>
Rishon Letzion, n Israel
Wednesday, September 09, 1998 at 13:43:36 (EDT)
Wow, so many fellows suffering the same. I'm struck with this terrible pain since
about 10 years, every year for about 8 weeks with changing times during the day and
night.I'm 34, male, smoker(in my opinion has nothing to do with CH). I'm stunned that most
of the people writing here are from America. But it's surely that CH in Europe (i'm
German) is not recognized and most Doc's just say :"Migrane, you have to live with
this". Just had my annual Attacks, now since 1 week painfree, and thank whoever, it's
like winning a jackpot. Not fearing to go to sleep, not cancel appointments,leaving
parties immediately. the only problem is, you know this beast will return next year. This
time i first heard about O2 and IMIGRAN (IMITREX). Kiss Glaxo Wellcome CO., helped really
wonders. The problem, i live in China, and here it,s treated like a poisoneous drug, so i
have to receive it from hongkong, very costly. Does anybody know how to get it more easy??
Another relief i found is either standing in front of the A/C and breathing the cold air
or taking hot showers. Appreciate any E-Mail. Thanks and never give up
Stefan <mbssd@online.sh.cn>
presently Shanghai, China
Wednesday, September 09, 1998 at 03:58:58 (EDT)
JUST wanted to let every one know there not alone. I have had my chronic cluster
(well you know) for about three years now with very little relife. see ya C.L.C
curtis charlson <ccharlson2@aol.com>
chesterton, IN USA
Tuesday, September 08, 1998 at 20:39:08 (EDT)
I started getting clusters at age 18. They stopped at age 40. Haven't had them for 8
years till two weeks ago. Now they're back. Just like I remember. Glad to have found this
page. I think clusters are related to sleep and intensity. I have been working very hard
on a project for a client, writing some programs, and got pretty intense for a couple of
weeks when BAM here came the headaches. I am working on being calm again. Oxygen seems to
help if you get on it early enough. Luck to all.
Tod Burhans <tburhans@worldnet.att.net>
Perrysburg, OH USA
Tuesday, September 08, 1998 at 20:38:03 (EDT)
Six years of severe cluster headaches,the last four years, all year long, and
sometimes as often as two or three a day. I have tried almost everything, and the only
thing thats worked is verapamil and what a relief, it actually worked. if you have not
tried this, its worth thinking about.
jason <jibwah@aol.co.uk>
london, england
Tuesday, September 08, 1998 at 17:23:22 (EDT)
I am a 58 year old female and started haveing cluster headaches on 5-27-85 at
2:11pm. I remember looking at the clock thinking, this is the time of my death. In a way
it was as life for me has never been the same.
Kay L. Combs <kay.l.combs@am.pnu.com>
Kalamazoo, Mi USA
Tuesday, September 08, 1998 at 14:48:34 (EDT)
I started having cluster headaches about 5 years ago and had a 5-week episode every
October and May Then they went away for two years. Now, I'm in the third month of their
return. They were very intense for the first two months, but very light for the last 2-3
weeks. My only relief from the bad ones is to use Stadol nasal spray at the earliest sign
of startup, but during the peak of the cycle, I can go through a bottle of Stadol in less
than 2 days. I hope all of you folks are figuring out a way to get rid of these damn
things.
Tony De St. Jeor <destjeor@msn.com>
Littleton, CO USA
Tuesday, September 08, 1998 at 13:51:38 (EDT)
Thanks very much for putting this information up on the Net, i have been looking for
documentation I can hand to my GP about clusters. Only my specialist really seems to have
any idea what he's treating, so it's good to have some reading material to hand to my GP,
especially as I don't think she has time to go look for the information herself. Thanks
again. I was beginning to think nobody was looking out for us. a very happy, Jonathan in
London
Jonathan Poulter <jpoulter@dircon.co.uk>
London, United Kingdom
Tuesday, September 08, 1998 at 10:51:54 (EDT)
Monday, Sept 7th, 11pm. I am up with peircing pain behind my left temple
....sometimes it lasts hours, sometimes less, doctors have called them migrains, noone has
ever been able to cure them....NO ONE has ever told me about cluster headaches.... I found
this site just tonight!
angie hodson <jang63@Yahoo.com>
F.C, Co USA
Tuesday, September 08, 1998 at 00:52:56 (EDT)
cluster headache suffer hope is all i got!!!!
DOUGLAS WOLKE <DWOLKE@SNET.NET>
MARBLEDALE, CT USA
Monday, September 07, 1998 at 17:24:15 (EDT)
I'm 50 yr old male and have suffered clusters for about 4 years, My DR put me on
prednisone and I have felt so weak from it?
Ned Sokoloff <ned@specialtygroup.com>
PGH, USA
Sunday, September 06, 1998 at 21:48:20 (EDT)
nice to find. i've known the name for over twenty years but not many have been able
to shed any light on this. most seem to be unable to comprehend the pain i've bookmarked
this site. thanks
woody <wgraham@nbnet.nb.ca>
st. stephen, nb canada
Sunday, September 06, 1998 at 20:54:12 (EDT)
Husband is the sufferer, Rick, age 39, has had clusters for approx 12 years
Kathy Tinkham <Msanne@aol.com>
Nashville, TN USA
Sunday, September 06, 1998 at 18:19:27 (EDT)
What is the difference between cluster and migrain? I've had migrain all my life and
i'm 62 now. I'm using the Imitrex inhaler and it has worked the time i did use it. good
luck everyone Herb
HERBERT A KAUL <SOCKET@WEBTV.NET>
SEATTLE, WA USA
Sunday, September 06, 1998 at 17:21:49 (EDT)
It is very nice to know you are not alone. Very few people understand what I am
going through, they want to help , but are unable. Thank You, Kristi
Kristi Wiloughby <kristiwilloughby@hotmail.com>
Beaver Dam, KY USA
Sunday, September 06, 1998 at 16:20:44 (EDT)
Recently diagnosed with cluster headaches. Currently undergoing treatment with
methylpridisolone.
Brad Hammack <BJHammack@aol.com>
Leander, Tx USA
Saturday, September 05, 1998 at 20:39:46 (EDT)
I have had Clusters since 1954, I am now 58 and am having my gazillionth attack.
After all this time, I still try to tell my self its alergies, when I know its not. It's
great to find people who know how bad it hurts. Mine usually start an hour after I go to
bed, then I get 4/5 a day for 4/6 months. I hate when they start, cause I don't want to go
to sleep, afraid of when its coming. But I've learned to deal with them 1 second at a
time, and lots of O2. Glad you are here. Thanks.
Kurt Johnson <KURT1283>
YORK, PA USA
Saturday, September 05, 1998 at 19:27:22 (EDT)
I have just had to disappoint my family once again by cancelling a family bar-b-que
because I have a HEADACHE! I've been up since 2 a.m., moaning, vomiting, ingesting
Tylenol, showering to relieve the uncomfortable fever-like feeling, then freezing....More
Tylenol-- sometimes 10+++/daily. It's a miserable way to live! Sometimes I am headache
free for months and am lulled into a false sense of "recovery" then, out of
nowhere it strikes AGAIN! I live in fear every single day of this happening and have
become paranoid about committing to anything, because I fear having to cancel and let
people down and knowing they think this is an EXCUSE for not wanting to follow-through...
that's almost worse than the pain...knowing no one understands that I am incapacitated
completely by this pain! HELP! Thanks for "listening"!
Sheridan Emery <emery123@pacbell.net>
Danville, CA USA
Saturday, September 05, 1998 at 15:39:46 (EDT)
I'ts great to know about this site.My cycle is due 5/99,and I'm going to do
everything in my power to stop it.Keep up the good work!
john morrison <moraftbluz@aol.com>
medford, ma USA
Saturday, September 05, 1998 at 13:58:35 (EDT)
You are right. It is good to know we don't suffer alone. It is very difficult to
explain to others about cluster headaches and the misery they cause...including a total
disruption of life at the time! I have had clusters off and on for 19 years, but I have
not had a recurrence for two years now. I am keeping my fingers crossed!
Rita A. Gaupp <3-meows@msn.com>
Baton Rouge, LA USA
Saturday, September 05, 1998 at 01:15:16 (EDT)
Looking for information on Sansert & other medidcations
Jim <lnorwood@ainet.com>
Ceres, CA USA
Saturday, September 05, 1998 at 00:34:02 (EDT)
Thanks for the web site.....it may help to make it through this madness!
Campbell H. Williams, Jr. <houston46@aol.com>
Jonesboro, Ga USA
Friday, September 04, 1998 at 23:23:49 (EDT)
It's nice to know I'm not alone. I have suffered with them for 30 years. I had been
to numerous Doctors who had no idea how to treat them or much less how to diagnosis them.
Finially I found one who understands them and treats aggressively. They have been called
the "suicide headache" but my neurolgist has taken that word out of it.
John Pojman <poj2@aol.com>
Tulsa, Ok USA
Friday, September 04, 1998 at 19:32:03 (EDT)
I've been getting clusters for 20 years, half my life. The first time I actually
read about someone else having the same symptoms as me I could hardly keep from crying.To
find out that other people suffer in the almost exact way was one of the most comforting
things I can remember in my adult life. I just found this heven sent web page and look
forward to sharing info. and comfort to others. thank you
Allan Peters <apeters@tidepool.com>
Eureka, ca USA
Friday, September 04, 1998 at 19:21:51 (EDT)
Absolutely wonderful site! Marvelous! Read it all! I have them and hate them....they
are so very painfull. Thanks to those who take the time to share their information. Maybe
one day a cure will be developed and we can all come together and celebrate! Good luck!
Sonnie Parker <snap@p-c-net.net>
Troy, AL USA
Friday, September 04, 1998 at 12:57:14 (EDT)
Have had chronic clusters for 12 yrs - am 38 yrs old. Tried verapamil, lithium,
oxygen, ergotomine, prednisone and on an on. Also tried full spectrum lights, regulating
sleep schedules. All can be effective for a period of time, but nothing works
consistently. I'm in a bad spell right now. I'm looking for anything new (that's not
dangerous). I've been to my "local" cluster specialist as well as Dr. Kudrow in
Los Angeles, with no significant results. Most of my successes have been as a result of
self-study.
John G. Reynolds <elaine@syspac.com>
Phoenix, AZ USA
Friday, September 04, 1998 at 12:49:58 (EDT)
My son in law takes 2 millegrams of SanSert three times a day. Results: no headaches
if used regular and after two to three days dosage. Are there any known side effects of
taking SanSert over a long period of time. He must stop taking them for one month every
six months. billo
Bill Ocker <billo@flash.net>
Mico, OK USA
Thursday, September 03, 1998 at 21:30:26 (EDT)
You are right about the most incredible pain. I am going on 10 years. I get them
once a year in the Spring. I take Prednisone and Wigraine(ergotamine). That is the only
com-bination that works for me.
Caryn Price <caryn@detnet.com>
Onalaska, TX USA
Thursday, September 03, 1998 at 20:31:14 (EDT)
HI, My name is Nora, and I'm Michael's wife. He has been suffering with cluster
headaches for over 10 years. They had gone away for the last 3 years but their back. He is
on Imitex injections and pill form. But we need more HELP. He suffer's with anywhere from
4 to 8 headaches a day. Please if you have any information for us let us know. Thank You,
In Pain, Michael & Nora
Michael Duffin <mamaduf@AOL.COM>
STAMFORD, CT USA
Thursday, September 03, 1998 at 11:48:46 (EDT)
What a great site! I have suffered with clusters since 1978 when I was 16. I've
tried every med known and some things seem to work for a while but then become less
effective. The last two years I have had very good luck with Imitrex - other than fighting
with the insurance co to get enough. I really enjoyed the article you have posted about
CH. I have read a lot of things but never something so in depth. It is good to know that
there really is a lot of research being done to cure this thing. It would be interesting
to get the perspective of the doctor who wrote the article on Imitrex.
Dennis Jorgenson <dennisj@pacifier.com>
Vancouver, WA USA
Thursday, September 03, 1998 at 01:45:38 (EDT)
I have had CH's now for 14 years. I am afraid I have little to offer in the way of
new insights to treatments or causes. But after finding this site and others, I am amazed
at how many people have had such a hard time being diagnosed and helped. It is a real
cause for anger. I'm very fortunate in that I've known almost from the start the name and
nature of this affliction. This site will surely be a Godsend for many. It also brings to
mind the "other" sufferers. For I have had very little occasion for a loved one
to witness this. It must be almost as bad as having one - to have to sit and watch someone
you care about go through it, knowing there is nothing you can do. The only time I ever
allowed that to happen was because I was in somewhat of a "remission". Oh well,
good luck to all of you. Hang in there. And for all those "others", the loved
ones, God bless.
John Herr <MscLoft@aol.com>
Raleigh, NC USA
Thursday, September 03, 1998 at 00:36:00 (EDT)
Great Site. I have been a frequent sufferer of cluster headaches all of my life. It
is nice to know that there are other people who can sympothize with my problem. Also, the
information was great. I have never seen a more in-depth explaination. Thanks.. Keep up
the good work.
Patrick Frenzel <pfrenzel@compuserve.com>
Berkley, MI USA
Wednesday, September 02, 1998 at 22:10:48 (EDT)
I have gotten c/h every summer and have taken Prednisone to break the cycle. This
year I went to a new dr. who suggested I get a Cortisone shot, instead of taking
Prednisone. He said it wasn't as bad for your system. I have been headache free for nearly
three weeks without the side effects of Prednisone!!! It has worked like a charm. Good
luck to all!
Laura Hausman <LLKKHH@aol.com>
Cleveland, OH USA
Wednesday, September 02, 1998 at 20:39:59 (EDT)
Great page! I have been cursed with clusters, at first "classic" and now
chronic for the last 21 years. I have also seen many doctors and had many different
medicines tried on me. I have had the expirience that most meds seem to work for a period
of time, then they become ineffective. I have tried all of the classics, calcium channel
blockers, anti-depressants, pain meds, DHE-45 injections, oxygen etc. I have been able to
gain some releif by using Stadol NS at the first hint of a headache. If I wait too long,
it is also ineffective. The primary problem with this treatment is that most docs think
due to addiction that it is worse than anything else. Having watched an Uncle die as a
result of taking Lithium for cluster, I have a hard time aggreeing with this assessment. I
am intrigued with the idea of treatment with local anesthetics, but I am deathly alergic
to them, thus they are not an option. I recently moved to the Bay area, and my old doctor
is now refusing to renew my prescription for Stadol, whent to a new doc here and he said
he did not want me as a patient due to the use of Stadol. In fact, he would not even
assist in getting me off the stuff so that I could at least only have the headache misery!
I have been looking for links to pages with docs that are a little more progressive, and
willing to either resume treatment with the Stadol, or look for a new answer without
putting me back on everything I have tried allready. I see a lot of folks get relief from
Imitrex, but that had very little effect, the DHE injections worked a little bit better,
but my legs felt like pincushions since I took two shots daily for six months. I was
looking at a migraine page, and found that some had been able to get disability due to
their headaches. If I can't get something going here soon, I am afraid that is where I
will end up. My problem is what I would call a downward spiral. The more headaches I get
the less sleep I get, causing me to get more headaches. It is a vicous cycle. I even go
into the doc with a letter from my old one listing what has been tried and what the
results have been. Looking at the letter, I have been on over 50 different medications! I
can now say I am a human drug testing lab.
Dave Seidl <dave.seidl@lmco.com>
Livermore, CA USA
Wednesday, September 02, 1998 at 13:56:49 (EDT)
I have bookmarked this site to help my tormented sole. I did think I was all alone
with the unexplainable pain . Is there someone in my time zone I can talk to about methods
of attack? EASTERN STANDARD. MARK (lurch) p.s Iam on icq
Mark(Lurch)
Orange, nsw Australia
Wednesday, September 02, 1998 at 01:40:57 (EDT)
27 years old and diagnosed in 1995 with cluster headaches. I am amazed at the
ignorance and arrogance of the medical profession. I also went through several
misdiagnosis. You only have a sinus infection, take these antiboitics and call me if you
don't feel better. Yada Yada. My pharmicist even almost refused to fill my prescription
for Ercaf. I almost raised more hell than his ambivalent pea brain's worst nightmare. Walk
a mile in my shoes.....and then you can question the legitamacy of this pain. Any feedback
on Ercaf (ergotamine)positive or negative? Side effects? It seems to work well for me if I
catch it in time.......I have never heard about O2 treatments until I found this website
tonight. Is it expensive and how effective and practical is it? Best of luck to
everyone...and thanks to those significant others who are patient and understanding.
Sean Tyler <tylerst@ix.netcom.com>
Vancouver, WA USA
Wednesday, September 02, 1998 at 00:12:35 (EDT)
Greetings to you all. Who ever said "no pain, no gain" should be drawn
& quartered. I have had clusters since about 1985. They grow stronger each year. only
recently were they diagnosed as cluster headaches. Imitrex so far is the only thing that
helps. When I don't have any, (which is most of the time) the only thing that keeps me
from cutting my throat is being in a HOT shower letting the water flow over the pain.I
will gladly volunteer to test the threshold of Imitrex doses. Three per week is trash.
I've done 10 & would have done more if I had any (that's supposed to be a 30 day
supply!). Maybe someday I will learn how to stay on the other side of here & not have
to come back.
Glen S. Muters <glen.muters@worldnet.att.net>
syracuse, ny USA
Tuesday, September 01, 1998 at 12:27:09 (EDT)
