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 the day the site opened (April
11, 1998) thru May 31, 1998. 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
Thank you for an excellent site. I wish that my doctor would read it
and then she may understand the agony that we suffer. I started to have attacks about 6
years ago usually in the autumn and they would last for about 6 weeks and then nothing.
The last bout started in Sept 97 and went on until Feb 98. It started again on 30 May so
what has gone wrong? Last autumn my doctor prescribed Imigran which did nothing at all and
then left me to suffer. It appears that you get better understanding in the States.
Perhaps I should hop on a plane. From one sufferer to many others try to keep smiling
although it is difficult.
dennis stapleton <denny01@globalnet.co.uk>
huntingdon, UK
Sunday, May 31, 1998 at 16:29:14 (EDT)
CH for over 5 years. Continues unabated.
Frank O. Stanway <stanway@cchono.com>
MILILANI, HI USA
Saturday, May 30, 1998 at 23:08:13 (EDT)
What can I say except that some day these CH may stop - even for a few
years- if not permanently. But then perhaps we then have to deal with the ravages caused
by the drugs. We must be aware of the possible short term help v the long term harm of
some of the protocols.
Ted Hunter <thunter@parod.com>
Cuba, KS USA
Saturday, May 30, 1998 at 13:45:19 (EDT)
I am in the second week of my FIRST run of Cluster headaches. OUCH. I
was diagnosed as having CH after the third day of pain by my GP and immediately jumped
onto the NET to find out more about the condition. After reading from fellow suffers I
feel I am extremely lucky in having such a quick diagnosis. I have always had headaches
(as long as I can remember) but these were easliy fixed using standard pain killers -
paracetamol etc.. and were usually related to the over consumption of alcahol. Tried
ERGODRYL but this failed and had some serious side effects.!!. However, I am currently
trying PREDNISOLONE 25mg tabs (1 twice a day/three days & 1/2 twice a day/three days
& 1/4 twice a day/three days) and it seems to be blocking the attacks. I have been ch
free for almost 36hrs!!!! It will be interesting to see if they return after the my
PREDNISOLONE course is completed. I believ that my CH are related to three factors
(ordered by importance) stress, sleeping pattern alcahol&smoking binges. I have
managed stress, sleeping and alcahol - the quit smoking date has been set - wish me luck.
Karl Reynolds <karl.reynolds@australia.ncr.com>
sydney, nsw Australia
Saturday, May 30, 1998 at 08:01:35 (EDT)
I will soon be 43, have experienced ch for 20 years. I am just starting
into a cluster (after a 2 yr reprieve). My cycle usually takes 6 weeks to run the course.
Have tried virtually everything and have concluded that (for me at least) Oxygen is my
best option to ride them out. Have worked a scale of 1-10 to rate severity. 1 is just a
regular "run of the mill" headache 10 is either screaming at the top of your
lungs or passing out. Have never experienced a 10 but have had a few 9s. Thanks for the
site. I am sorry that all of you must deal with this demon pain, however it is comforting
to know that there are ch brothers out there who understand how real this all is. Hang in
there brothers and sisters.
Tom Nea <tomneal2@aol.com>
USA
Friday, May 29, 1998 at 08:28:52 (EDT)
thank you for making this information available , i have had this
headache every day from sept. 1997 , and have been treated for a sinus infection three
times but this week i found a doc that heard what i was explaining , for three days i have
been pain free , and have used the web to find additional info on the big ache .
wayne bailey <ibornaman@aol.com>
mobile, al USA
Friday, May 29, 1998 at 01:47:26 (EDT)
have had ch since summer 1975. diagnosed summer 1987. was in the u.s.
navy and was treated for numerous ailments. since proper diagnosis (by a warrant officer
p.a.) prednizone and o2 seem to help. curently in cycle for last 1 1/2 weeks after 4 year
reprieve have two butt kickers per day one about 1:30-2:00am and other around noon. had
one from 1:pm to about 6:00pm today. i'm 47 now and was told once by a neurologist he'd
never seen an "old" person with clusters but didn't define old. well as my old
friend spock would say "live long and prosper" later on
dave annis <dlannis@radiks.net>
colfax, ia USA
Thursday, May 28, 1998 at 22:01:53 (EDT)
I am suffering from cluster since 9 years. I get web just to get in
touch with informations and poeples who have the same monster.(sorry for my bad
english!)After 10 days on internet I finally find this site. I already feel a beat better.
Thanks for your work.
Liette <mmmliet@cam.org>
Montreal, Qc Canada
Thursday, May 28, 1998 at 18:48:14 (EDT)
Going through a bad time
John Ross <john-r@kirksville.k12.mo.us>
Kirksville, MO USA
Thursday, May 28, 1998 at 15:48:59 (EDT)
I have had these things since 1968, but in the past they were always
diagnosed as sinusitus. (No cures, of course.) And to be fair, some of the docs said they
didn't know what it was. I just recently found out what is going on. All this information
gives me hope.
w.w. clarke <clarke@pstbbs.com>
Seattle, WA USA
Wednesday, May 27, 1998 at 13:49:33 (EDT)
What can I say? Ouch?
w.w. clarke <clarke@pstbbs.com>
Seattle, WA USA
Wednesday, May 27, 1998 at 13:42:23 (EDT)
I am currently in a cycle. I am now on Prednisone. The Verapamil I was
prescribed last time made my headaches worse. I recommend a Chinese herbal drug:
"pian tou tong wan" My brother got it OTC in China town
Matthew Dorr <mdorr@lanier.com>
Pittsburgh, PA USA
Wednesday, May 27, 1998 at 08:05:44 (EDT)
Cronic sufferer, why is there no research done on Cluster Headache?
Roger St.Amand <Bigroge@sympatico.nb.ca>
GRAND FALLS, graNB CANADA
Tuesday, May 26, 1998 at 10:22:25 (EDT)
Finally I have found some real info that I can actually aply to
everyday use. Thank you.
Krisy Sanders
Phoenix, az USA
Monday, May 25, 1998 at 22:12:33 (EDT)
I've had C/H's for 17 years, I'm 41 now. Currently in cycle. Used to be
every Fall, then Spring now the last 8 years every other Spring. (Thank God). Verapamil,
Prednisone, and 02 work for me. Took YEARS to find that out! Nobody, Doctor or otherwise
knew what I was talking about. thanks for the site!!!! I'll be in touch. Will write my
story to help others. YOU are NOT alone!!!!!
Doug Downey <downey@lni.net>
Tecumseh, MI USA
Monday, May 25, 1998 at 20:48:00 (EDT)
I have been suffering from clusters since the early seventies. Previous
to that I had the other symptoms (teary eye and congested sinusus on one side) but without
the pain. Rebounds are very common.
Steve Cordova <steve.j.cordova@intel.com>
Albuquerque, NM USA
Monday, May 25, 1998 at 14:12:44 (EDT)
I have had clusters for eight years. I am 48 yrs. old, male, Recently,
they have been the most severe, lasting at up to three hours. I have just had my second
CAT scan, which Neurologist have found fluid behind my forehead and skull. They did Spinal
tap, found too much protein. Reg. amount should be 3, mine was 5, very bad at 6 or above.
I go for another MRI (second in month, to see if fluid is still there Then what? The Drs.
say I'm too old to take Imetrex, I've tried oxygen,Predisone, you name it, I've tried it.
Is there anyone out there that has had the fluid in front lobe?
Tom Myers, Jr. <doc@dbtech.net>
Tuscaloosa, AL USA
Monday, May 25, 1998 at 01:47:27 (EDT)
Thank you for this great site! I am sorry that there are so many who
have to suffer from the same pain, that I experience. Undisturbed nights to all of you
Lars Wendt <lars.wendt@essen.netsurf.de>
Essen, Germany
Sunday, May 24, 1998 at 20:32:44 (EDT)
Had my first bout of CH last Monday 2 A.M. (pain from temple to temple,
across forhead and around eyes). Went to ER and sent home with "default"
diagnosis of Migraine. Saw family Doctor next day (diagnosis- tension headache). Tuesday
morning, 1 A.M. sudden excruciating pain awakens me from sound sleep. Feels like the front
of my head will explode at any second. Return to ER, Physicians's assistant on duty has no
idea what's causing the pain, and can't believe that the pain can be that severe. Massive
quantities of Demerol "mask" the pain, and I fall asleep. Upon awakening,
headache is returning and have been admitted to the hospital. See Neurologist 2 days later
and am told that I am his 5th CH sufferer this week. Am put on a "cocktail" of
drugs, which seem to be helping, after some dosage changes. Now when the headache returns,
it's much milder. I guess there are no clear answers as to why, at the age of 43 I have
started having CH, but am glad there is a place such as this to get information.
R T Taylor <siple13@northnet.org>
Saranac Lake, NY USA
Sunday, May 24, 1998 at 12:03:14 (EDT)
Had my first bout of CH last Monday 2 A.M. (pain from temple to temple,
acress forhead and around eyes). Went to ER and sent home with "default"
diagnosis of Migraine. Saw family Doctor next day (diagnosis- tension headache). Tuesday
morning, 1 A.M. sudden excruciating pain awakens me from sound sleep. Feels like the front
of my head will explode at any second. Return to ER, Physicians's assistant on duty has no
idea what's causing the pain, and can't believe that the pain can be that severe. Massive
quantities of Demerol "mask" the pain, and I fall asleep. Upon awakening,
headache is returning and have been admitted to the hospital. See Neurologist 2 days later
and am told that I am his 5th CH sufferer this week. Am put on a "cocktail" of
drugs, which seem to be helping, after some dosage changes. Now when the headache returns,
it's much milder. I guess there are no clear answers as to why, at the age of 43 I have
started having CH, but am glad there is a place such as this to get information.
R T Taylor <siple13@northnet.org>
Saranac Lake, NY USA
Sunday, May 24, 1998 at 12:01:52 (EDT)
Thanks for the Cluster Info. Best I've seen to date. I've been
suffering from them since '88.
M.Holland <Holland>
San Antonio, TX USA
Sunday, May 24, 1998 at 01:16:49 (EDT)
I had two episodic clusters with a three-year remission after each. Now
I've been in a chronic cluster for over five years.
Russell Van Zandt <russvz@wwa.com>
Chicago, IL USA
Saturday, May 23, 1998 at 13:52:27 (EDT)
Went to family MD yesterday to find something which would prevent my
"migraines" from recurring on such a frequent (constant?) basis. Boss was
beginning to think I was hypochondriac, I think. :) ...though I've only ever called in
sick with headache once). I also have simple partial seizures, and true maigraines which
are the aura for my seizures. So that's what we thought these were. Glad to know there's a
site here, and that someone else understands, not only the pain, but the helpless feeling,
when the pain goes on and on, and it seems like the longer the attack goes on, and the
worse you feel, the less people take you seriously...but forget "crying wolf";
in the midst of an attack, I can't bear for anyone to even WHISPER "wolf"...LOL
Trying to keep a sense of humor about it, at least around "normal" people,
because I'm not an invalid, or hypochondriac, and don't want to be treated as such. I've
managed to change careers...former social worker...and return to school fulltime while
working fulltime, and maintaining a 3.8 average. So I'm determined that I'm going to
control this as much as I can. Taking Lamictal and Buspar for seizures and complications,
taking Phrenilin as needed, and started yesterday on Tenormin. Wish me luck! As I do all
of you!
Maggie Andrews <laceweaver@mailexcite.com>
Jackson, MS USA
Friday, May 22, 1998 at 13:34:38 (EDT)
I personally do not suffer from CH,but my brother does,and has so for
many years. I suffer from chronic pain,due to a lower back injury,that surgery has not
corrected. I would love to find a site,like this,dedicated to those suffering from chronic
lower back pain. You have done a considerable job,in providing CH suffer's a place to vent
their frustration, and let them know that they aren't alone. Now if I could only find a
simular site,for people like myself,that have chronic lower back pain,I would be a happier
camper! You are to be cpommended for what you have done for CH suffer's! Keep up the good
work
Dave Berry <berryshuttle@webtv.net>
Costa Mesa, Ca USA
Friday, May 22, 1998 at 11:53:45 (EDT)
I personally do not suffer from CH,but my brother does,and has so for
many years. I suffer from chronic pain,due to a lower back injury,that surgery has not
corrected. I would love to find a site,like this,dedicated to those suffering from chronic
lower back pain. You have done a considerable job,in providing CH suffer's a place to vent
their frustration, and let them know that they aren't alone. Now if I could only find a
simular site,for people like myself,that have chronic lower back pain,I would be a happier
camper! You are to be cpommended for what you have done for CH suffer's! Keep up the good
work
Dave Berry <berryshuttle@webtv.net>
Costa Mesa, Ca USA
Friday, May 22, 1998 at 11:40:43 (EDT)
My mother has been suffering from cluster headaches for the last ten
years. The doctors have told her that they are not typical. She does get them in the same
spot every time, but her headaches can last several days and she has between twenty and
twenty-five every month. The only releif she has found has been with Ultrum and that
doesn't always work I need to know if anyone has experienced severe short term memory
loss. Mom has been tested several times for Alzheimer's. We have been told that she
doesn't have it. Any help in this area would be extremely helpful As bad as the headaches
are for her, I think that her loss of memory bothers her much more.
Anne Courtney <c10171@freewwweb.com>
union, ky USA
Thursday, May 21, 1998 at 23:31:00 (EDT)
I have been on the net for over a year and have not been able to find
any support groups. Finally somebody who understands the pain of this demon in my head.
Thank you we will be chatting alot I have a feeling. JSRD
James B. Berry <BerriesJSRD@webtv.net>
Yucca Valley, CA USA
Thursday, May 21, 1998 at 22:59:40 (EDT)
Unreal pain been going on for about three years just started new cycle
can't wait til it's over thanks for the place to vent
Steve Barnes <Backbraker>
Lockport, NY USA
Thursday, May 21, 1998 at 20:11:27 (EDT)
Thanks for having this great site! It really helped us with our school
project! Thanks again! P.S. Good luck!
Erica and Randi
Spencer, WV USA
Thursday, May 21, 1998 at 10:07:44 (EDT)
Great sight.. Had CH for 13 years went chronic about two years ago.
Finally broke the cycle for about a year taking inderial, verapmil. Guess my body is
getting used to the medicine I seem to be getting activeity again. Hope not.
Steve Johnson
Wednesday, May 20, 1998 at 23:47:35 (EDT)
Am looking for a Doc. in s.e.mass. who understands us . If you know of
one pls. e-mail me. tks. Joe B...
Joe B <jojoba.meganet.net>
Fall River, MA USA
Wednesday, May 20, 1998 at 14:51:32 (EDT)
After 6 years of remission, I am both devastated by my recent relapse,
and reassured by the presence of this site. None but a fellow sufferer knows.
Joseph G. Zulevic <joseph.g.zulevic@boeing.com>
Burien, WWA USA
Wednesday, May 20, 1998 at 14:22:29 (EDT)
I'm a fellow sufferer that is very happy to find this sight.
Jim Blackwell <cog@flash.net>
Norman, ok USA
Monday, May 18, 1998 at 14:28:02 (EDT)
After years of suffering I was finally diagnosed with cluster headaches
last November. I was so glad to know that I wasn't crazy, that the unbelievable pain I
felt was real and that I wasn't alone. Although I saddens me to know that others are
living this hell along with me. Since then I have been constantly searching for new info.
to help control the pain and have been moderately successful. I am so glad to find this
site and you can be sure that I will be visiting it often. Spring has always been the
season for me and these headaches, and this year I'm going to stay ahead of them. With
your permission I would love to link this site to my own page so that more people can find
you. Thank You.
Hans J. Schreck <Schreck1@ix.netcom.com>
Austin, Tx USA
Monday, May 18, 1998 at 02:02:14 (EDT)
Like the others that I have read about, I am surprised that there are
so many that have these headaches. I thought I was the only one. Although, most of what
you say is true, I have a couple of questions. Does anyone experience a need to sleep
after the major pain has gone? Its like I almost passout. I wake up an hour or so later
with some memory loss and a lot of energy. Also, I wonder why I never get them at work. I
have had them for 15 years or so, and I have only had a attack at work when I worked an
extra shift. But during my regular shift have not had one. Still, I am grateful for this
place. Thought I was the only one who thought the pain was unbearable and wanted to jump
out of a window to end it all. I will be monotoring this site regularly and will have
entries. I wish all well and look for an end to this war.
Joe Barboza <jojoba@meganet.net>
Fall River, Ma USA
Sunday, May 17, 1998 at 17:30:58 (EDT)
Thank you for all of your good work.
Wayne Holbrook <waynebetsy@mindspring.com>
Atlanta, GA USA
Sunday, May 17, 1998 at 08:05:19 (EDT)
WOW!!! I know I should not get excited knowing there are thousands out
there feeling this life altering pain,but your right I feel better knowing I'm not alone.
To whomever built this site, THANK YOU
J.T.SMITH <ethan96@gte.net>
bradenton, fl USA
Saturday, May 16, 1998 at 23:44:10 (EDT)
I am glad we are all able to suck so much info of the net in order to
try and help ourselves. My doctor here in B'ville has prescribed Stadol NS and 25mg.
Imitrex tablets which I use in combination to fight these SOB's. I have also found in case
of an intracranial nuclear holocaust to use these in conjunction with pure O2 @ 6-8 liters
/min. for about 6 or 8 minutes will usually slay the beast. I have had some awful
motorcycle crashes as a kid, hit the pavement at 60+ and skinned my back on the highway,
ground my right boob of on a gravel road, cracked each knee 3 times and exposed the bone,
broken my right clavicle twice, the left once, and had a sliver of steel driven in to my
eye, but nothing, nothing, that has ever happened to me hurts like a cluster attack. My
phriendly pharmacist looks at me like a junkie when i get all these magnum strength
prescriptions filled, I 'spose many of you know the feeling. I am a white male, age 30,
married with one child if that helps any of you statisticians out there. Lord help if the
Dr. decides to cut off the Stadol...
Wade Sprayberry <dolly@stc.net>
Blairsville, GA USA
Saturday, May 16, 1998 at 19:01:30 (EDT)
This is all new to me. After all these years , I really thought it was
a sinus headache. I finally ended up in the ER. I was in so much pain, and the frequency
has increased. So now I know what it is , now I can deal with it.. I just wanted to say
thanks for the information. Cyndi
cyndi <cynkar1072>
southfield, mi USA
Friday, May 15, 1998 at 22:17:59 (EDT)
I am 50 years old and have suffered for 12 years. My last episode
lasted for 10 months. I get them on a daily basis, and the only relief is provided by
oxygen and ergotamine. But, my Neuro read something in a European Medical Journal that
gives me hope for the future. He prescibed 3mg Melatonin. I take 3 pills at bedtime, and
haven't had an incident in over a year. Not even an inkling. If you haven't tried this,
please do. It's available over the counter. Let me know if you have similiar type success.
Good Luck!
Jake Segal <jakespub@pipeline.com>
Greensboro, NC USA
Friday, May 15, 1998 at 09:34:17 (EDT)
In the last 14 years that I have had Clusters, the only drug that takes
the edge off is Stadol (butorphanol tartrate) Nasal Spray. Unfortualy, unless your
insurance will pay for it, forget it! A vial of ten squirts costs about $60 dollars. It
comes in 2.5ML vials at 10 mg per mL.
C. W. Peterson <WayLay>
Texas City, Tx USA
Thursday, May 14, 1998 at 23:28:40 (EDT)
I am 45 years old. I had my first cluster when I was 11 years old. I
was told that I had clusters when I was 39 years old. I have told that my headaches were
allergies, sinus problems, stress, lifestye, and all in my head. The clusters happen only
at night. So, my Doctors have never seen one. Only a couple of Doctors in the Emergency
area of the Hospital. I have gone to a two year cycle the last 3 cycles I have had. In
July it will be two years. So I am trying to get ready with info for my Docotors. I a
little fearful
Tony Barnes <jbarnes@socket.net>
Jefferson City, mo USA
Thursday, May 14, 1998 at 19:13:31 (EDT)
I`m 28 years old. I've had cluster for 8 years. When I woke up one
night with this pain in my head I thought I was going to die. It is the most frightening
and horrible experience I've ever had. Now I've learned to live with it, and I thank the
doctor who gave me a name for this hell that occure 3 to 4 weeks of my life every single
year. Not many people have heard about this desease and that includes physicians- it's a
problem....
Cecilie <cili@online.no>
Sarpsborg, Norway
Thursday, May 14, 1998 at 17:21:05 (EDT)
Wonder public service! Thank you!
Linda <CandyLin@aol.com>
SC USA
Wednesday, May 13, 1998 at 23:43:07 (EDT)
Thank you.I knew others were out there,but had no idea how many.Had 'em
for 30 years,since I was 12.One good thing,it raises your pain threshhold!(had the end of
thumb cut off,no big deal.)I consider myself lucky,as I average once a year for a couple
of weeks and they usually "only" last an hour.I have had good luck with
cafergot,so I haven't tried anything else.Currently having an episode where I am having
4-5 a week;always 2-3 hours after going to sleep,this is fun! Thanks for a wonderful page.
you have a lot of good information.My heart goes out to the chronic sufferers and the
unknown sufferers who are alone and facing the beast without knowing what it is.
Sincerely,John
John K. Wade <johnw@teleport.com>
Roseburg, OR USA
Wednesday, May 13, 1998 at 20:05:12 (EDT)
Been battling these headaches for 31 years. The best remedy I've found
is an ice cold shower - with the shower head set on needle spray - played back and forth
on the hemisphere of your head that hurts. usually takes about 15 min. for relief
Terry Mitchell <TRMOPR@aol.com>
Chippewa Lake, OH USA
Wednesday, May 13, 1998 at 19:53:12 (EDT)
Thanks for the site, truly only fellow suffers can understand the pain
of these attacks. I have suffered from clusters for over 10 years and am in the middle of
my first bout in almost 3 years. I was naive enough to think they were gone for good. I do
get relief from imitrex but I also get rebounds from it as well. I am currently on my
second round of predisone but like last time the headaches are becoming more frequent as
my dosage tapers off. I have also just been put on bacufil (sp ?) but it is to early to
say what if any effects it will have. My bouts are always in the spring or fall, w/ fall
being the worst, I have to think that there is some seasonal reason for these due to this.
It's nice to have a site to go to and know that I'm not alone. My heart goes out to all of
you.
Roger Bressette <breset@ibm.net>
Staatsburg, N.Y. USA
Wednesday, May 13, 1998 at 10:40:32 (EDT)
I AM TRYING TO GET AS MUCH INFORMATION ABOUT CLUSTER HEADACHES AS I CAN
FOR MY BOSS. I RECENTLY FOUND HIM COLAPSSED ON THE GROUND AND THE DOCTORS THINK IT'S
CLUSTERS. HE'S IN HIS EARLY 60'S AND HAS NEVER HAD ANY PROBLEMS UNTIL NOW. IF YOU CAN SEND
ME ANY SPECIAL INFO. I WOULD BE VERY THANKFULL. THANK YOU FOR HELPING ALOT OF PEOPLE.
MICHELLE HOLAS <SHELLEYDEL@AOL.COM>
MACOMB, MI USA
Tuesday, May 12, 1998 at 23:18:26 (EDT)
Thanks for the great info.
Tom Browne <tjbrowne@fast.net>
Doylestown, Pa. USA
Tuesday, May 12, 1998 at 22:40:21 (EDT)
My cluster headaches are pretty much under control now, but I remember
how bad it used to be and I can't get over being afraid that something will start me at
ground zero again.
Trudy Barna-Lloyd <AuntTurtle@AOL.com>
Magnolia Community, TX USA
Tuesday, May 12, 1998 at 22:26:40 (EDT)
MY FATHER HAS SUFFERED WITH THESE HEADACHES SINCE HE WAS 30, IN AUGUST
HE WILL BE 60 YEARS OLD.HE HAS NEVER FOUND ANYTHING TO HELP HIM HE HAS A JOB THAT REQUIRES
HIM TO BE THERE AND ON CALL,ON TOP OF ALL THIS HE FARMS TOO. ANY INFORMATION YOU CAN SEND
ME WILL BE APPRECIATED. LOVED ONE OF A CLUSTER HEADACHE SUFFERER.
NANCY COMBS <wizzer@carol.net>
anderson, sc USA
Monday, May 11, 1998 at 19:34:29 (EDT)
Thank you so much for providing a site that is just for us sufferers. I
am an american living in England where my husband is stationed. I first was diagnosed with
ch while on Norplant I saw a neurologist that said they weren't realated to the norplant.
So I was given self injections of imitrex and sent on my way. That was 3 years ago I had
the norplant removed and the pain was gone. Well, about 6months ago I had one while
visiting friends and had to be taken to the hospital the docs said that I was pregnant and
gave me oxygen to get rid of the headache.Unfortunatley I lost the baby but I had no more
headaches for a while.Until about a week ago and I woke up and had one start I fought
through it and it went away. An hour later another hit and it was so intense that I felt
like I was having a stroke or something. My husband took me to the er and they put me on
oxygen again but that didn't help so they hooked me up to an iv and put medication in it
THAT HELPED!!!!! The doc there said that what i may have is ch that bring on a migrane
too. Make Sense? I was sent home with promethezine (which is usually used for severe
vomiting or stomach upset & sometimes as a sedative) . I have had a ch every night
since then and last night had 2, 1 woke me up. The medicine works but it is also a
sedative so I get really drowsy. The docs say I may be pregnant again and that I may have
to live with the ch's the whole time. Has anyone else had to deal with this and if so what
meds can you take other than something that knocks you out? I have 2 other children and I
can't be sedated all the time. I am so happy that there are others out there to help me
understand this horrible pain that keeps on coming back. Giving birth wasn't this bad.
Hope everyone finds a solution to their own pain. God Bless.
R. Gray <thezoo@clara.net>
Brandon,Suffolk, England
Monday, May 11, 1998 at 05:12:41 (EDT)
I'm glad I found this area on the net. While it's been two years since
my last bouts with clusters, I'm deathly scared of its return visits. My first episode
with them was in my late twenties (20 years ago). I hardly evet suffered with any type of
headaches prior to these. They lasted about 7-8 weeks, starting with a couple bouts/week
and going to 5-6 days per week and even a couple on some das. A Mayo nurologist diag. them
for me and so much as told me "after this episode is over, you may not have any for
years. He was right, I went 7 years until the next 2 month cluster. They were more painful
then the first bout. Then it was 6 years later when they returned again for another 2
months, and even went to the hospital one early AM for a shot of demeral to get rid of the
pain. My last bout was a mere four years later (2 years ago). I guess if the progression
stays the same, I will be due again in a year or two. I don't know why they are getting
shorter as time goes on, but I sure hope they won't become an annual or semi-annual
occurrance, because you'd rather NOT BE LIVING during these attacks. Thanks for hearing me
out. D. Benson
Dennis Benson <sitzbenson@webtv.net>
USA
Monday, May 11, 1998 at 00:44:17 (EDT)
Never knew there were so many of us out there! I've been a sufferer
since I was 17 and am in my mid thirties. I've tried every drug you can think of,
Prednisone is the one that seems to work for me but over time the clusters out last the
drug. Had a bad spell last night and decided to see what I could find on the webb.
Hopefully I will be able to find some releif through networking with other sufferers. No
pain to all of you.
Ed .P <ejp@istar.ca>
Guelph, On Canada
Sunday, May 10, 1998 at 19:07:43 (EDT)
I am recent diagnosed c. h. sufferer. I don't have a comp yet so my
info is limited. I will try to make it to a comp to chat on scheduled night
Brad Bowers
Kansas City, Mo USA
Sunday, May 10, 1998 at 17:33:31 (EDT)
Thank you for an excellent home page for those of us who have been,
eventually, diagnosed with Cluster Headache. Following the episodic form for three years
or so, my condition took the chronic form eight years ago. I would like to contribute more
but not until I have read all the information on the opening pages of this site.
Unfortunately I find I cannot read too much of it at one time. Is it possible to download
the text for a more relaxed read? Best Wishes.
John Law <j.law@btinternet.com>
Sunday, May 10, 1998 at 13:25:33 (EDT)
hi new to the site but not to the headaches.10 years of suffering since
the age of 20 with three to four attacks a day for the past 2years i have been taking
240mg verapamil one a day 20mg prednisone 3 a day then tapering them off and imitrix
injections and have had great succes in reducing the number of attacks and the length of
the cluster i get my headaches once a year and they last about four to five weeks. before
the medication im using now nothing worked i would eat pain pills and lay in pain for an
hour or two.itook my first shot of imitrix about fifteen min into an attack and the pain
was gone in just a few minutes it has to be a miracle drug.well not to good on the
computer yet gotta go hope they find a cure.
will hoffman <dhoff@pottsville.infi.net>
friedensburg, pa USA
Sunday, May 10, 1998 at 11:04:55 (EDT)
First let me say i'm glad i found you folks out there. I've been
suffering with this mind numbing problem for about a 1.5 years the first bout lasted 5.5
months and was stopped by taking steriods for 11 days. I have had a total of about 1 month
without a headache in the whole time my doctor tells me i will develop a pattern soon and
things should be more regular in lenths of my bouts. Is she right? Also i would like to
know of a non drowse pill or something to take. I am with the canadian armed forces and i
drive trucks for a living so i need to stay alert. Any help would be great. Thanks.
les pringle <lpringle@compusmart.ab.ca>
edmonton, ab canada
Sunday, May 10, 1998 at 03:24:46 (EDT)
I have suffered from these monsters sporadically since 1980. The
occaisonal trip to the ER in the early days taught me that not even massive doses of
Demerol would kill the pain. I was milked for thousands of dollars from TMJ specialists,
and (as a man) was treated like a drug addict seeking a fix when I would speak to a doctor
about the pain. Just this year, I was introduced to Imitrex Nasal Inhalers. In combination
with Sansert I have found relief. Though I do still feel the occasional aura, I haven't
had a full blown killer in about a month. I'm sorry all you people suffer from this
unbelievable pain, but it is good to know someone else truly understands the helpless
feeling associated with these attacks. God bless you all in your fight for relief. Brent
Cumbie
Brent Cumbie <bdcumbie@aol.com>
Watauga, TTX USA
Saturday, May 09, 1998 at 00:22:32 (EDT)
I am almost 50 years old and suffer from these headaches about once a
year. I can't find anything to help me. They absolutely ruin my life when they are going
on. I have used imetrex and it does seem to help but I am having a hard time making my
doctor understand and I am having a hard time getting imetrex.
Ken Hammer <hammer@ida.net>
idaho falls, id USA
Friday, May 08, 1998 at 19:19:35 (EDT)
I periodically get cluster headaches and then they come daily, either
in mid-afternoon or 1 or 2 in the morning. Years ago I tried various migraine remedies,
oxygen, etc. When I moved from Denver, the clusters seemed to go away or abated. Now I
have been back in Denver for several months. They have returned with a vengence. Several
years ago I read in a health magazine that I Philadelphia doctor found that Sinutabs
administered at the very first sign of a cluster helped 80% of his patients. I used this
for a number of years and it helped. Now it seems not to be as helpful. I take a couple of
Tylenols and 2 Sinutabs and then use hot packs or cold packs which attenuates some of
them. Need better solution. Please advise. Sometimes these can really be vicious and leave
be debilitated for several hours.
Gene Nordby <gmn5@juno.com>
Denver, CO USA
Friday, May 08, 1998 at 17:47:38 (EDT)
I'm grateful to find this website and the info on it. My spouse is a
chronic sufferer, bears up fairly well, but I want to see the pain end. We are lucky, our
family physician got the diagnosis right away, without years of tests and run-around. I am
concerned about the pharmocological merry-go-round that my spouse may go through. Good
luck to all of you!! LJH
ljh <jhofman@bigsky.net>
USA
Thursday, May 07, 1998 at 20:55:18 (EDT)
great, great, great, just found this site, now i can show the rest of
the world i,m not nuts. printed out the complete article. well take it to my old doctor
and tell him to put it whear the sun don,t shine. i have found all my answers on this
site. love it, many thanks, p.s. an now using migranal and it works great, gone in 30
minutes to 1 hour.
ralph sunderlin, maine <silver5657@aol.com>
kittery, me USA
Thursday, May 07, 1998 at 20:44:32 (EDT)
I see a lot of familiar testimony here. This is certainly a welcome web
site. I have been battlng these things for 25 years. I have found that Oxygen is the
miricle cure for me. It always neutralizes the headache in 10 or 15 minutes. Even if I
don't start the treatment untill it's a full blown monster. I was very suprised that I
didn't see more reference to Oxygen as a treatment for these things. Maybe it isn't as
effective for you as it is for me, but I am now about in the middle of another series of
headaches. I have simply started carrying a tank of O-2 with me at all times. No other
medication. I can usually beat them to the draw, and hit the oxygen at the onset. A few
minutes latter, that "tell-tale" temple pressure is gone, and the headache is
aborted. I can continue with my life untill the next time. If I get caught without my
oxygen, I will certainly pay dearly. If you haven't tried it, you should. Can you even
remember what the word "relief" means? Maybe someday someone will figure out how
to beat these. Good luck with yours.
Lee Matter <matter@onebellevue.com>
Bellevue, oh USA
Wednesday, May 06, 1998 at 23:45:50 (EDT)
After 30 years of fooling around with me they have now decided it's
cluster headaches.they started treatment 3 days ago.Hope it works.It is great to have
found this site.
Ken Apel <firefo@webtv.net>
Henderson, Ar USA
Wednesday, May 06, 1998 at 16:48:21 (EDT)
I am 42 and have been suffering (is there any other word) with cluster
headaches since I was 19 or 20. White female in otherwise excellent health. They are
usually 14 to 16 months apart and last about 3 to 4 weeks. Currently taking Prednisone
which seems to prevent them for the most part, but there are side effects. My condolences
to who ever else suffers from this chronic disease!
Monica L. Gray <mgray@nswg1.navy.mil>
San Diego, CA USA
Wednesday, May 06, 1998 at 15:50:15 (EDT)
My wife has been a cluster sufferer for 17 years (since she was 21).
First they were classic (8 weeks then gone) 9 years ago they went chronic lasting up to 11
months. Treatments over the years have been too many to list here but we had them all I'm
sure. Rescently my wife has been diagnosed with a Candida (Yeast) imbalence and has been
put on an antifungal med called Diflucan. So far so good (knock on wood) her ch's have not
returned as of yet but she feels like they are waiting in the wings. And as most of you
know out there this is prime time season for these damn things to appear. To send me email
replace the nospam on my address with enteract. This is a great site for all of you and
people like me who have a loved one with these cursed things. Years ago we were all on our
own but not anymore. Good luck to all of us.
Robert Zamarocy <zhammer@nospam.com>
Il USA
Wednesday, May 06, 1998 at 11:55:37 (EDT)
My wife has been a cluster sufferer for 17 years (since she was 21).
First they were classic (8 weeks then gone) 9 years ago they went chronic lasting up to 11
months. Treatments over the years have been too many to list here but we had them all I'm
sure. Rescently my wife has been diagnosed with a Candida (Yeast) imbalence and has been
put on an antifungal med called Diflucan. So far so good (knock on wood) her ch's have not
returned as of yet but she feels like they are waiting in the wings. And as most of you
know out there this is prime time season for these damn things to appear.
Robert Zamarocy <zhammer@nospam.com>
Il USA
Wednesday, May 06, 1998 at 11:51:44 (EDT)
I just found out from a friend that this is what I have. I have been
going to the doctor's for a couple of years thinking that it was just intense sinus
headaches. Recently, they have gotten so back, I thought I was going to have to go to the
hospital. I am so relieved to know what this is and to know there is a site devoted to
this subject. I can't explain to you the elation I feel when I read some of the articles
and know others can relate to the pain and not give me this crazy look and go, "So,
you feel like someone's trying to poke your eye out and your head is going to explode?
Nope, never heard of anything like that?" It is just nice to know others know exactly
what I am going through. Thanks!
Kathryn Blackwell <Kathryn_Blackwell@GTSI.com>
Centreville, VA USA
Wednesday, May 06, 1998 at 10:42:02 (EDT)
I get um!
Charles W Peterson <Waylay>
Texas City, Texas USA
Tuesday, May 05, 1998 at 22:57:55 (EDT)
It's nice toknow that there are other people with this thing .
Seth Piepgrass <avrock@inreach.com>
Dinuba, ca USA
Tuesday, May 05, 1998 at 20:34:15 (EDT)
I suffered from Cluster headaches from the age of 13 through 33. The
article I downloaded from this site is right on the money. I wish this information was
around years ago. I have not had a cluster headache in about 12 years. During those years
I went to Montefiore Headache Clinic in NYC which diagnosed my headache problem as TMJ and
sent me to a dentist. Back then I do noth think they even recognized Cluster headaches.
During the years I have tried Lithium, Propanol, Calcium channel blockers, ergotomine,
prednisone, Elavil, Endep, Bellergal, and probably some other meds I cannot remember,
along with Fiorinol, Codeine and Demerol. Sometimes I thought some of these meds might be
working, but I was never sure if it was the medicatiion or the end of a cycle when the
headaches would stop. The one treatment that absolutely worked for me was Oxygen. I think
I read about it at the time in Parade magazine and decided to try it. It stopped the
headache or aborted the headache after about 5-10 minutes of breathing through a mask.
Although the headache might come back, the oxygen would always get rid of it. I still have
tanks of Oxygen in the basement and hope I never need them again. I have to believe that
the pain from a Cluster headache is some of the most severe a person can endure. I can
remember thinking to myself during an episode that I would gladly cut off a finger, etc.,
if it would get rid of the headache.
David Kolb <DAKOLB@COMPUSERVE.COM>
Westfield, NJ USA
Tuesday, May 05, 1998 at 12:37:35 (EDT)
This is a great site. Thank you.
Nancy Johnson
USA
Tuesday, May 05, 1998 at 10:51:31 (EDT)
I've been suffered from CH since 9 years ago,and -sigh!- now i have 3-4
attack in a day, everyday!Please, if someone can help me i will appreciate it.
Luigi Castaldo <gigiotto@tin.it>
Naples, It
Tuesday, May 05, 1998 at 04:37:23 (EDT)
I've been suffered from cluster headache since 12 years ago. Recently,
I found an article that tells Vitamine-B2 is effective for headache from Japanese Internet
home page. Have you ever heard about it? Although the article tells it was effective for
some patients, it didn't tell that when patient quit to take it,what's happen.
MIYAKO KIBA <mkibajbo@concentric.net>
New York, NY USA
Tuesday, May 05, 1998 at 00:29:05 (EDT)
Great Job!!
John Plewes <travis@peganet.com>
Naples, Fl USA
Monday, May 04, 1998 at 17:02:44 (EDT)
I have suuffered with cluster headaches for around the last 9 years.
Last year 1997 was the first year I didnt have a bout out of the 9 years. In the past the
bouts have only lasted 1 to 2 weeks and I have gotten through without the use of any any
heavy medication. In the past I thought they were only a type of migraine and just used to
take your everyday headache tablets for relief (not that they done anything). However this
year I have suffered with chronic cluster headaches that have currently lasted for $
weeks. I am using Cafergot and Deseril to contain them. One question I have for other
sufferers is, during a cluster bout and whilst on medication does anyone still get a
sensation on the side that the cluster takes place. Whilst the medication keeps the
cluster at bay, I still have a niggling sensation in my eye and tremple almost constantly.
This being the worst bout I have ever had I was wondering if this was common. I never
relised how many people suffered from this condition until doing some research this year .
Congratulations on a informative site.
Cameron Thompson <lumpys@bigpond.com>
Cowell, SA Australia
Monday, May 04, 1998 at 02:23:34 (EDT)
Great site!
jim & jennifer <jwjw@fuse.net>
Cincinnati, OH USA
Monday, May 04, 1998 at 00:27:48 (EDT)
Im a 53 year old male, been suffering since I was 39. Right now Im
taking Corgard twice a day.(40mg). Along with nasal Stadol, to take the edge off, my
quality of life has improved. In the last 14 years I guess I've tried just about every
CLUSTER remedy there is. Oxygen, Imitrex, and Sansert all relieved, but what a rebound.
God I can't beleive there are others out there that have these damn things. By the way has
anyone tried N.O.(laughing gas) to get through an episode? Great Sight!
Charles W. Peterson <waylay>
Texas City, TTx USA
Sunday, May 03, 1998 at 23:03:58 (EDT)
My husband suffers frequently. Now I'm working. This has been
difficult, as we have five small children (anyone wonder why he has headaches?) I'd like
to hear more about the effect this has on families. Hopefully we'll find something helpful
other than waiting until he outgrows this.
Nita
USA
Sunday, May 03, 1998 at 22:57:24 (EDT)
I am a thirty five year old male. I'm one of the lucky ones that got
diagnosed early and currently geting relief from taking verapamil. The bad news is I took
prednisone and developed avascular necrosis of both hips after taking it for only nine
days. My hips have been permanently damgage and require several surgeries maybe even hip
replacements. Everybody keep the faith. Its great to identify with other sufferers. Keep a
positive attitude. It will help.
Meyer Birnbaum <meyerhb@aol.com>
USA
Sunday, May 03, 1998 at 17:17:18 (EDT)
I am 52 and have had clusters since I was in my early 20's. Until a few
years ago I did not know what I was dealing with. I thought that this was just some kind
of strange type of headache. I have not taken any type of medication for my headaches.
Most of the things that I have heard of sound like they have a lot of side effects. One
thing that I would like to try is Oxygen. I have heard that this gives relief in many
cases. It is good to have a web page like this one. Keep up the good work!!
Jim DeKorte <the4js@juno.com>
USA
Saturday, May 02, 1998 at 23:20:32 (EDT)
I've been a chronic sufferer for 5 years. It's comforting to know that
I'm not alone. People just don't understand what CH suffers go through. It's not just the
terrible pain of the headaches, but trying to drag your butt into work the next day when
you haven't slept in days.
Ed Cole <edco@flash.net>
Grosse Pointe, Mi USA
Friday, May 01, 1998 at 21:52:15 (EDT)
No small comfort to know that others live in this very private hell.
I'm 42 and have had clusters since age 27. This episode, I'm taking indomethacin (50 mg
three times a day). Seems to keep the beast at bay sometimes, but other times I think it
might dull the intensity but prolong it for up to 12 hours. Also makes me woozy/dopey and
I can't concentrate well. I also run 5-6 miles about twice a week and enjoy long hikes,
but several times have experienced onset after about an hour of vigorous exercise. Cause
and effect is difficult to state with certainty, but seems pretty likely. Thanks for the
site.
anne <anne.burke@worldnet.att.net>
Los Angeles, CA USA
Friday, May 01, 1998 at 19:28:06 (EDT)
Hello all of you Nice to know that this head-ache is well known all
over the world, for a time being I thought I was the only one suffering from it. I find
that people find it difficult to understand as they can not see any sign of pain, and 5
min. after the "attack" you are ready fit for fight again, until next time. Take
care of your self.
Lene Sandberg <l.sandberg@lan-com.dk>
Copenhagen, Denmark
Friday, May 01, 1998 at 03:54:03 (EDT)
GREAT SITE!!!!!!
mitch <zachary@eagleweb.net>
campbellsville, ky USA
Thursday, April 30, 1998 at 21:08:18 (EDT)
I am suffering now for over 16 years and I am only 31 now. No doubt
that it is in fact the worst pain know to man. I do not know that I have taken anything to
completely get rid of the pain. If caught ahead of time, everything works o.k. If not
caught, nothing works until the cycle is complete.
Paul J. Jones
Watson, IL USA
Thursday, April 30, 1998 at 16:05:44 (EDT)
NICE TO KNOW I AM NOT ALONE
TONY BUCKLAND
ANCASTER, ONTARIO CANADA
Thursday, April 30, 1998 at 15:55:50 (EDT)
I am 48 and had my first bout with clusters at 21. My bouts are always
1 month long and my headache free period has always been at least a year and seems to have
grown over time. My period between bouts is now up to 3 years. For the first ten years or
so I did not know this thing had a name and I did not seek treatment. Since then I have
used oxygen and verapamil with great success. I won't say it hasn't effected my life but I
always coped by knowing that it would end in a few weeks. Now that I have found effective
treatment it is a breeze. Keep the faith! Does anyone know if we outgrow this stuff and
are we statistically more likely to develop cardiovascular problems( or is that just a
function of the high prevalence of heavy smoking and drinking among cluster sufferers - I
don't smoke or drink )
Jack Boyd <jackboyd@juno.com>
Babylon, NY USA
Thursday, April 30, 1998 at 14:07:19 (EDT)
Good to know I'm not alone. Got on the web today because I am in the
middle of one of my famous "Spring" cycles with two episodes last night.
Everytime I go into deep sleep they come, usually during an intense dream. I have had
these since I was 15, I am now 38. Best thing I've found is Cafergot supositiories. It
stops them in about Five minutes. If you can't find a place to stuff something "you
know where!" the Cafergot pills work ok on an empty stomach. Good luck everyone
Gary Stone <gary@ixiacom.com>
Newbury Park, CA USA
Thursday, April 30, 1998 at 13:25:24 (EDT)
Since my last cycle of clusters, I have been looking at all the sites
that deal with them. It is great to have a forum just for us because no one else has any
clue to what we go through. I used oxygen last November with great success and now keep a
tank on hand "just in case". I have never met anyone else who has these monsters
so I guess this will be as close as I can get!
Anne
Charlevoix, MI USA
Thursday, April 30, 1998 at 12:24:29 (EDT)
I'm 44 and suffered cluster headaches for some 2 years though they were
only diagnosed correctly about 3 months ago. My Neurologist has prescribed Indocid which
seems to help but takes a while to "kick in". Great Web site, it's an excellent
source of infomation.Thanks! I'll be back.
Phil Francis
Melbourne, VIC Australia
Wednesday, April 29, 1998 at 23:53:16 (EDT)
WOW, what a sight I was beginning to think I was the only clusterboy
around. I've been dealing with HELL for the past 15 years. I'm 39 and suffer chronically.
Ipresently am taking sansert 6months then Prednisone for a month etc. etc. I'm looking for
hospitals or Doc's in need of a patient for experimental meds . I'll do anything to help
myself and anyone who gets these nightmraes from hell. Please let me know .Thanks for the
great web sight and my thoughts and prayers go out to you all.
Rowdy <fellows5@gateway.net>
YOUNGSTOWN, OH USA
Wednesday, April 29, 1998 at 22:02:39 (EDT)
Been in the Cluster Headache business since I was 23, now 33. The usual
deal, tests for brain tumors and then to Midrin which really doesn't help much anymore.
Just started using the nasal Imitrex (20mg) and if I catch it early, it works within about
15 minutes. Sometimes. Averaging about two episodes per day, one an hour after going to
sleep and one mid-afternoon at work. (why is ken in his office with the lights off again?)
Really appreciate your site and I will scan it for any relief. Thanks again. I'll pass it
along to two other CH friends right away. Ken Boesen Fresno Ca
Ken Boesen <ken@arsfresno.com>
Fresno, CA USA
Wednesday, April 29, 1998 at 15:54:48 (EDT)
I am a cluster headache sufferer and have been since the age of 15. My
teachers in highschool use to think I was on drugs because my right eye would turn so red.
I was utterly terrified. I was hospitilized for tests to make sure I didn't have a brain
tumor. I was correctly diognosed by the age of 18. I was on Inderal and Fiorinal back
then. At age 27 I found a headache clinic at MSU in Ann Arbor, Michigan that saved my
life. I was put on Verapimil and have not had another headache. I am now 31 and happily
married with 4 children, and feel tremendously blessed that God answered all my prayers.
He sent people my way to help me when I needed it the most. My empathy goes out to anyone
who has to deal with these terrifying headaches. There is no pain like a cluster. Trust
me. I had natural chidbirths and it doesn't compare to clusters. They are the closest I
have ever felt to dying.
Tamatha Lee Egner (TAM) <David62@msn.com>
Novi, MI USA
Tuesday, April 28, 1998 at 23:44:26 (EDT)
Thanks for a great site. I've had these beasts since 18 and I am now
44. Usually every year or every other year. Prednisone and Imiprimene have helped the best
but sure hate to take the stuff. It's comforting to know you are not alone with a cranial
amputation like this one going off in your eye and head. Good luck to all of us to find
the solution to these demons Ray
Ray L. Davidson <maridale.davidson@mcione.com>
Plano, TX USA
Tuesday, April 28, 1998 at 20:41:09 (EDT)
I have suffered with Cluster Headaches for 8-9 years. I previously took
"Corgard" as a preventitive. Now I can take it to help taper the severness of
them. "Corgard" is mainly for high blood pressure (which I DO NOT have), but
doctor said if it works, it's due to the shrinking of swollen, spasming vessels. I am now
in research of what causes them, and how to prevent them altogether. Perhaps, I am
dreaming.
Linda Kessell <gooddayws@aol.com>
Corvallis, OR USA
Tuesday, April 28, 1998 at 14:31:30 (EDT)
I've been a cluster sufferer on and off for 7 years. It attacks 1-3
times a year and is a REAL bear for those couple of weeks or months it hangs around. I've
recently started taking Zoloft ( Dec. 97) and Indomethacin. They curtailed my headaches
after a month and boy what a month. It's good to know that others are able to share advice
on their findings. These headaches really HURT!!
Jamie Johnson <jjohnson@davisfloyd.com>
Greenwood, SC USA
Tuesday, April 28, 1998 at 12:11:40 (EDT)
Thanks for taking the time to develope this site. I don't have anyone
around me (including my wife) that quite understands the pain, both physical and
emotional, that comes with cluster events. I have been diagnosed with cluster for 12 years
now with this being the 4th episode. Once again, thanks, and I'll be visiting often.
Ken Strong <kstrongjr@aol.com>
Rochester, NY USA
Tuesday, April 28, 1998 at 09:42:05 (EDT)
THANK YOU!!!!! Women with CPH unite! Share your helps with the rest of
us. Sometimes we have to help the doc's along, don't we!
Sedge
WI USA
Monday, April 27, 1998 at 18:39:57 (EDT)
I am a 38 year old male. My headaches started about 1 1/2 yrs. ago.
First diagnosis was sinus infections, which I have had in the past. About 8 months ago I
was told it was Cluster haedaches. I am currently on verapamil and have occasionally taken
prednisone for the real bad sessions. Has anybody had good luck with Biofeedback or
anything else. Thanks
Wayne Herter <wherter@concentric.net>
Brookfield, Ct USA
Monday, April 27, 1998 at 15:47:18 (EDT)
I'am enjoying your reading.
RALPH SANCHEZ <sanchez5@lightspeed.net>
Bakersfield, Ca USA
Monday, April 27, 1998 at 14:02:18 (EDT)
Nice site, Thank you
Jim W.
Paducah, KY. USA
Monday, April 27, 1998 at 13:43:47 (EDT)
For many years I suffered from what at first was said to be `sinus
infections' later it was suggested that it might be caused by `bad teeth'. Uh uh! Nope!
After losing just about *all* my teeth suffering through all sort of `experiments' with
assorted antibiotics and other `voodoo' I finally found a neurologist who knew what it was
all about as he also had clusters! Whoa!! After begining to think that not only had I
messed up my body back in '66 when I broke my neck but that I'd messed up my mind as well
this was a `wonderful' discovery! I'm currently in the `in remission' stage for now but if
everything holds true I'll be alternating between Imitrex and Cafergot again sometime in
the next 3 to 6 months. But, and here's the great thing, I now know that there *is*
something that'll bring relief and will cut short the episodes! It *has* taken *me* many
years and trials and tribulations to find this but it has shown me that there can be
`light at the end of the tunnel'! My `suggestion'... If you can *don't* just go with *one*
doctor and their opinion (Unless you happen to be lucky and find the `right one' the very
first time!) but instead take advantage of *every* `option', within reason, you can! If a
`doctor?' accuses you of `drug seeking behavior' when all you are asking for is relief
then it's most likely time to find a new one. Same thing applies to those who, at the very
first visit, try and tell you, without *any* preamble, you are in `rebound'. (Only *if*
they can present a *good* and *reasonable* case and are *willing* to actually help you
come off whatever they say you are `rebounding' from would I consider them. Above all,
*don't* implicitly believe anyone who promises a `silver bullet' that'll immediately and
permanently cure you. Tain't so I'm afraid. I've know several other clusterers who have
gone even longer that I in finding something that'll make life bearable again. Remember,
there *is* *something* out there that'll help but as it'll most likely be different for
you VS for me just hang in and keep up the `good fight'! To borrow a phrase from a very
dear friend, "You are *not* alone!" Doleo ergo sum, -HALFPINT-
Bob Whiston <bwhiston@ix.netcom.com>
Ft. lupton, CO USA
Monday, April 27, 1998 at 08:06:44 (EDT)
I'v been suffering now for almost ten years with Clustered headaches.
Started having them about nine years ago that went on for about two years then nothing
until now eight years later they have started up again. My doctor has put me on IMITREX
yesterday before that I tried many different medicines, and nothing seem to help. Does
anyone think allegies are the cause? Elliott K
Elliott K <befvel@emi.net>
Lake Worth, Fl USA
Saturday, April 25, 1998 at 10:23:46 (EDT)
This is a wonderful idea, I have sufferred from cluster headaches for
13 years. There have been many times that I'd wished my wife could understand the pain
that I go through. I look forward to using your site. Thank You.
Terry Simonds <Simonds622@aol.com>
Troy, NY USA
Thursday, April 23, 1998 at 20:58:24 (EDT)
I'M A CLUSTER HEADACHE SUFFER FOR 20+ YEARS I HAVE BEEN DOWN MOST
TRAILS FOR RELIEVE,I'M A CAD PATIENT WHICH ADDS TO THE PROBLEMS I AM TAKING LITHUM AND
ELAVIL WHICH GIVES ME RELIEVE. WHEN I HAVE AN OUTBREAK OF CLUSTER RIGHT AT THE START OF
THE HEADACHE I TAKE HALICON WHICH GIVES RELIEVE VERY QUICKLY. I WANT SAY AGAIN HALICON
MUST BE TAKEN VERY EARLY IN THE EVENT. MY ADDRESS IS JOHN HARRISON 7781 N 30 TH STREET
RICHLAND, MICHIGAN 49083
JOHN HARRISON <COMPUSERVE>
RICHLAND, MICOMSEMI USA
Thursday, April 23, 1998 at 14:15:58 (EDT)
Finally a site for people like me Thank you ive sufferd with these for
most of my life i will be back and thank you again
Brian d Walker <outlaw67_11@yahoo.com>
Ceawford, Ne USA
Thursday, April 23, 1998 at 00:31:52 (EDT)
Great site!
Mary
Mason City, IA USA
Wednesday, April 22, 1998 at 10:29:49 (EDT)
Love this site have searched for years to help my husband who is going
through a cycle right now. Now maybe i won't feel so alone and maybe we can find some help
for him. Thank You DJ those that suffer and those that live with the person really need a
place to turn to...
Eva <Hairim>
Atlantic City, N.J USA
Tuesday, April 21, 1998 at 21:25:02 (EDT)
Learned more tonight from my first visit to this site than from 20
years of seeing neurologists. Currently in a bout after 4 years of peace. Usually every 3
years for 1 to 3 months duration with 1 episode per day around 11:30PM. Thanks you for the
information.
"Bud" Winski <budwin@idt.net>
Sunnyside, NY USA
Tuesday, April 21, 1998 at 20:39:00 (EDT)
Hope to visit your website often now that I have found it!
Rick M. <doublejack@webtv.net>
Merriam, KS USA
Tuesday, April 21, 1998 at 20:09:42 (EDT)
You are providing a great resource that people going thru this 'hour of
hell' have needed for a long time
Gerry Clevenger <gcleven825@msn.com>
Houston, TX USA
Tuesday, April 21, 1998 at 14:41:16 (EDT)
Great idea! Misery loves company! Will be communicating often.
JOEL <yj4975@odia.usma.army.mil>
Poughkeepsie, NY USA
Tuesday, April 21, 1998 at 13:16:58 (EDT)
Classic cluster cycles for twenty years. Thanks For the tips and
advice.
Frank Sigman <Wynn47@strat.net>
Bowling Green, FL USA
Monday, April 20, 1998 at 15:03:49 (EDT)
I will look fwd. to getting into the chat room tryed to tonight but on
one thare ar 9:30EST. You have done a great job. I is varry scarry to know that pain can
be this bad but people cant see a sore/broken boon, you know what I meen thanks once more
ERIC
Eric Martinson <Emartinhh@aol.com>
Hilton Head, sc USA
Sunday, April 19, 1998 at 21:41:29 (EDT)
I've got the classic non-chronic case: Every two years, lasting about
three weeks, twice a day, like clockwork. I've tried coffee and running around to help.
Ice-scream scoop hot and cold, lightning bolts of throbbing pain, tearing, congestion,
nausea,... Thanks to these sites for all the advice!
Brian Jay <bjay@interlog.com>
Oakville, ON Canada
Sunday, April 19, 1998 at 12:47:24 (EDT)
Since 1979 I have been episodic and 10 years chronic. Now approaching 2
years painfree. Living proof that there is reason to hope for a better future. Thank you
for this site. To my cluster buddies worldwide, never, never, never give up.
Brian <billy3456@yahoo.com>
Charlottetown, PE Canada
Sunday, April 19, 1998 at 10:03:25 (EDT)
It is a wonderful sense of relief to find a webpage just for Cluster
Headache suffers. I am an episodic sufferer, and I am currently going through a LONG,
DRAWN out cycle. Hopefully, this will help me, if I stay well enough to stay updated. Hang
in there, and God Bless..JK :)
Jackie Keyes <jlkeyes@oz.online.net>
Ft. Riley, KS USA
Friday, April 17, 1998 at 22:55:04 (EDT)
I have had clusters for 16yrs. But my clusters follow the Trigeminal
Nerve in the face. I also have lots of swelling with mine, that not many people have.
Nancy <benchrest@feist.com>
Wichita, Ks USA
Friday, April 17, 1998 at 16:48:55 (EDT)
Episodic Cluster since age 16 (39 now) This is my first visit to this
site - and definitely not the last! See you.
Robert Krause <robert.krause@t-online.de>
Munich, Germany
Friday, April 17, 1998 at 14:27:14 (EDT)
It's a fine thing you have done for we that fight the demon. Great
site! Thanks!
Pat Smallwood <psmallwood@prodigy.net>
Ft Walton Bch, FL USA
Thursday, April 16, 1998 at 18:35:48 (EDT)
I forgot to add, I also use oxygen everytime I feel an attack coming on
along with the previous combination I listed.
Grace
NY, NY USA
Thursday, April 16, 1998 at 13:34:44 (EDT)
I notice most of the postings are coming from men. I am a female
sufferer. Mine come every 3 to 4 years for 4 to 12 weeks. Nothing works. But the following
combination makes things bearable: 60mg of Lithium 4 times a day, 1 shot of imitrex per
attack, and 12 x-strength tylenol PM at the point of attack. I also watch my diet.
Grace
New York, NY USA
Thursday, April 16, 1998 at 13:31:35 (EDT)
Great site - keep it up!
Simon Bower <SimonBower@compuserve.com>
Watford, Herts UK
Thursday, April 16, 1998 at 13:08:21 (EDT)
Fifth year of chronic clusters. I've tried more drugs than I can
remember,still no help.BTW this is a great site!
Chris Overstreet <coverstree@aol.com>
Kosciusko, MS USA
Thursday, April 16, 1998 at 03:55:43 (EDT)
I'm fortunate enough NOT to suffer the unimaginable pain of these
headaches, but my son is not so blessed. Since most people and the majority of doctors are
clueless to understand or help your agony, it's my prayer each of you will be able to
provide some relief through information shared through this web site. Good job ... and ...
may God bless you all !!!!
Linda Davis <Wasilake@aol.com>
Weatherford, TX USA
Tuesday, April 14, 1998 at 09:26:34 (EDT)
Twenty Two years now. Classic symptoms. Currently Episodic. Had about
eight years Chronic. Tried a lot of things. Motto: "Clusters Build Character"
Dan Line <cadline@fuse.net>
West Harrison (near Cincinnati), In USA
Tuesday, April 14, 1998 at 08:44:18 (EDT)
Have had cluster's for 35 years. It is only within the past 10 years
that a general care physican knew what they were it seems. They have been a profound
negative influence in my lifestyle.
Bill Little <wel@spartanburg.net>
Spartanburg, SC USA
Monday, April 13, 1998 at 15:14:58 (EDT)
I am 34 years old and have had chronic cluster headaches for several
years. I am glad to find a place where cluster headache sufferers can compare notes. I am
always interested in trying something that might work, when I know that another cluster
sufferer has tried the treatment and had some measure of success.
Patrick Schroder <pjschrod@gvtc.com>
Canyon Lake, TX USA
Monday, April 13, 1998 at 12:00:29 (EDT)
Very nice! Thanks for taking the time to put all the information
together!
Sabarina <Sabarina@aol.com>
Los Angeles, Ca USA
Monday, April 13, 1998 at 04:49:47 (EDT)
Good Job, let me know if I can help in anyway.
Lee Moore <progressive@worldnet.att.net>
Tulsa, Ok USA
Monday, April 13, 1998 at 00:37:22 (EDT)
I like your webpage. Keep it up.
Joel <jha@microlink.net>
Independence, MO USA
Sunday, April 12, 1998 at 22:21:37 (EDT)
Have CHRONIC clusters... &love it (Yeah, right)
George Giese <ggiese@juno.com>
Grayslake, IL USA
Sunday, April 12, 1998 at 20:27:54 (EDT)
Any words of advice or experiences would help
Willie <Perciival@aol.com>
Las Vegas, NV USA
Sunday, April 12, 1998 at 04:18:21 (EDT)
I hope you like this site as much as I think I'm gonna...
DJ <siktir@feist.com>
Wichita, KS USA
Saturday, April 11, 1998 at 22:58:54 (EDT)
