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 May, 1999. Thank
you for your continued active involvement in this site and keep those guestbook entries
coming!
Click Here to go back to the Main
Guestbook and post your message or read messages from other months
Hi, I am not a CH sufferer but my husband is. I really do not know how he came by this web page but we are both very thankful that he did. It is not only helping him but it is helping me as well. We are not alone out there and for 10 years we felt that we had this awful secret in our lifes that nobody understood. Whenever we mentioned headaches to anyone they either said "oh yeah I get those some times" and we felt like telling other things that I cannot mention hear. Like I said at the begining, I do not get the headaches but I often feel like I do simply but watching my husband go thru this and not being able to do anything to help him. I useto sing to him and rub his head to sooth the pain but that doesn't help anymore. I am glad to be part of this web page. THANK YOU VERY MUCH!
Karim Perez <KarimPrz@thecia.net>
Boston, MA USA
Monday, May 31, 1999 at 20:54:24 (EDT)
Thanks for this site. Started my episode a week ago. Have had the clusters for 30
years recurring every 13 months and lasting from 8 to 12 weeks. The pain is more intense
every year. I take Imitrex injections. That is the only thing that is working for me. I
had expected the CHs to start last October and started taking 40mg of Verapamil 3x a day
from September to December. I did not get the CHs then. I started taking the Verapamil two
weeks ago when the CH sensations started and increased this to 240mg TR daily. It has not
stopped the headaches. Imitrex tablets have not helped and I have also tried the Imitrex
nasal spray without success. I am looking for a doctor that specializes in CH in the
Cincinnati area. Can somebody give me a reference. I feel for all of you that suffer from
this terrible pain and hope we don't have to wait too much longer for a cure. Elisabeth
Elisabeth Thompson <hethompson1@prodigy.net>
Amelia, OH USA
Monday, May 31, 1999 at 07:07:49 (EDT)
I'm 45 yrs.old,and have had ch for 18 yrs.I use to get them 3 months every fall. 4
yrs. ago they became daily,with a month here and there,or a day or two, headahce free.
d.h.e was my lifeline. A daily shot,and I was normal again. Recently I developed a rebound
effect to the d.h.e., and can longer use it. They have a fairly new test, using a computer
to find what part of the brain is being affected by ch. They know certain types of
medicines work best in different parts of the brain, and then are able to treat the
problem better.No more experimenting with drugs that cover the problem or only help
temporarily. The lobe in my brain that was being affected responded better to seisure
meds. I just cannot explain how excited I have been with this new info. No more
shots,drugs,or awful side effects. Surgery was going to be my last resort,which had my
family scared to death. Hopefully ,soon they will learn what causes them,and be able to
eliminate them all together.Best of luck to everyone. Gayle
Gayle Robertson <explotrk@sierra.net>
hawthorne, nv USA
Sunday, May 30, 1999 at 09:52:33 (EDT)
I have had CH for over 20 years. The first 15 was spent with Drs who did not know
about CH or did not think it was that big a deal. All the medication did little except
give bad side effects and almost kill me with allergic reactions. I started with an
acupunctureist and taking FEVERFEW herb daily. Went on a NO peanuts, coffee, alcohol, MSG,
nutru-sweet, bananas, nitrates, etc. diet. Excersize 3 time a week and worked on keeping
stress low and the CH went from 2 boutes 6 weeks long a year to NONE for almost 5 years.
They just came back and I found this site. I believe they came back because I got sloppy
in my diet and was not excersizing like I should. Well after 4 - 5 years you get careless.
I just want to share the FEVERFEW parts of it as thee are no side effects, but it is
preventative, it will not do anythiing when you have a bout.
Walt Laforet <flutes@pil.net>
Fountainville, PA USA
Saturday, May 29, 1999 at 23:38:14 (EDT)
I am 33 yrs old and had my first CH on my honeymoon in Europe aprox 5 yrs ago.
Thought it was a masive toothache affecting the rt side of my face, but the dentist said
mt teeth were fine. A trip to the ER weeks later and an MRI showed TA
Anne Thomas <wThomas69@att.net>
Amenia, NY USA
Saturday, May 29, 1999 at 23:24:13 (EDT)
After 16 years of clusters I just came from the doctors with the same answer of
nothing he can do and no new drugs for the pain so im glad I found this page its most
helpful.Hang in there everybody.
Kevin Burke <kevin.w.burke@snet.net>
Windsor, Ct USA
Friday, May 28, 1999 at 23:26:19 (EDT)
Just a "Hello to all my fellow Migraine sufferers out there" Tips on how
to relieve headaches: 1. Run your hands under hot water. - (this will change the follow of
blood from your head, to your hands) 2. Add pressure to your hands - (between the webbing
of your thumb & index finger) 3. Breathe - (In through your nose, out through your
mouth) 4. Pray - (God always helps) 5. Take a hot shower (let the water beat on your
shoulders. I hope these tips help, they have helped me over the years & Good Luck!!!!
Marc D. Alston <Marcd@acninc.net>
Peekskill, NY USA
Friday, May 28, 1999 at 15:12:53 (EDT)
I´ve been having Clusterheadaches every second year since I was 17. Now I´m 43 and
know what Hell is like. Next year, in spring or summer, there will probably be another
"brain pain". To You who suffers now, all I can say is: hang on, even if You
don´t think so at this very moment, there will be days worth living. Love T.
Tommy Wiren <tom@telia.com>
Mörrum, Blekinge SWEDEN
Thursday, May 27, 1999 at 17:11:27 (EDT)
thanks for your email highlighting this website. i live in england and some of the
treaments you use in the states are not available over here but i will take the info from
your site to my doctor to see if he can get some find some thing that will work. i have
suffered with clusters since i was 31 im now 44 the strange thing about my clusters are
that they only occurr every 2 years, originally they only use to last for about 8 weeks
but the last bout lasted 17 weeks and i was getting 4 to 7 attacks a day most of them
during the night.the next bout is due late august this year and i would give anything to
for go the pleasure of this bout, the only good thing i find when having a bout is that i
loss weight as i can not have a drink.my clusters only effect the right side of head and
have found most drugs next to useless but what does seem to help is tapping my forehead
and resting my for head against something which is cold. apart from the pain which is like
some one has just thrust an ice pick into your scull it the total lack of sleep i get
during a bout that i find is the hardest. well most go i will stay in contact keep up the
good work all the best fellow suffers. best regards vic
vic drees <vjdrees@aol>
camborne, england
Thursday, May 27, 1999 at 06:07:43 (EDT)
Hello all!!!! I was diagnoised today with CLUSTER HEADACHES. It hit me for the first
time this morning driving to work.....Luckily I was able to pull over and get to a
Hospital. I didn't know what was going on I was thinking Brain Tumors, Stroke, I had no
idea what it was. I am glad that this site exists and that my Doctor told me about it. I
will be visiting often now.
Jeffrey D. Eaton <JJEATON@MSN.COM>
ISSAQUAH, WA USA
Thursday, May 27, 1999 at 02:10:27 (EDT)
I am not alone! I cannot believe how many poeple suffer from this. Yet, you never
meet any one who can even try to understand what CH are. I will now direct people to this
site in an attempt for them to try and relate what I go through for 3 months a year 4-6
times a day lasting 30min-2hours each. I have often times wanted to kill myself to get rid
of the pain.. I have been getting them since I was 18 and I am now 28. 10 Years. 10 Years
of wondering what I did wrong in my life to get this type of punishment.
John Perez <johnny1@thecia.net>
Boston, MA USA
Wednesday, May 26, 1999 at 21:28:18 (EDT)
i have suffered from clusyer headaches for 6 years.they are the worst pain i have
ever had.
cathie daniels <shylock@neo.rr.com>
mansfield, oh USA
Wednesday, May 26, 1999 at 19:49:50 (EDT)
I haven't had much success with any remedies so all I can do is suffer the worst
pain imaginable. I'm going thru a bout right now. But, this web site has enlightened me on
some alternatives. I hope spmething helps. It is pure hell...
Ken Brannon <Boneyak1@aol.com>
Pensacola, Fl USA
Wednesday, May 26, 1999 at 15:44:50 (EDT)
I have headaches every day. Been looking for help.
Dan Chopping <Dan_Chopping@ncsd.k12.wy.us>
Casper, wy USA
Wednesday, May 26, 1999 at 13:41:57 (EDT)
I would like to stay in touch in order to get any new information concerning cluster
headaches.
John Rocchi <jlkrock@nb.net>
Lower Burrell, Pa USA
Wednesday, May 26, 1999 at 11:58:12 (EDT)
Well....I just finished with a 2-day migraine and they truly are the worst kind of
pain -- except maybe for back pain. It is comforting to know that i am not alone with
clusters and i welcome anyone who would like support from myself.....and you in turn could
support me also. Take care everyone!
Donna <domaal@aol.com>
New Port Richey, FL USA
Wednesday, May 26, 1999 at 10:38:12 (EDT)
I, too, suffer from cluster headaches. Although, I have not had one for about five
years, I have survived the most unbelievable pain on this Earth. I would like to offer my
support to those who need it...and maybe I will need it in return someday
Dotty Noel <Dotsterooo@aol.com>
Wilmington, de USA
Wednesday, May 26, 1999 at 08:38:38 (EDT)
I agree the options for abortive and preventative should give more options, perhaps
select more than one. I haven't tried Oxygen yet, so perhaps my information isn't as
valuable as someone who has tried all options. It would be interesting to see how many
cluster suffers have tried each option. ( Just a thought.) Hang in there everyone..at
least they are acknowledging this exists now. I wonder if anyone else has heard the term
"seizures" rather than" headaches" it sure seems more appropriate to
me. Take care!
Charleen <Dowdsman@aol.com>
Littleton, Co USA
Tuesday, May 25, 1999 at 23:37:46 (EDT)
In your survey, I think you are missing a lot by not allowing one to specify what
"other" means. You did not offer me some of the choices I needed that I use to
treat these and could not let you know what it is just by checking "other". I
would strongly suggest you have or allow people to define just want is meant by other. I
have used methods not on your choice list and would like to let you know about them.
Thanks......
Barry Keller <blkk@juno.com>
Warren, PA USA
Tuesday, May 25, 1999 at 20:06:13 (EDT)
sorry to see there is a web page for a pain that no one can describe unlesss you are
a sufferer from these nasty cluster headaches, its been almost two years since my last
attack and now they are back and in rare form
brian <nygiant12@aol.com>
poway, ca USA
Tuesday, May 25, 1999 at 13:34:25 (EDT)
I'm a 33 year old female and I've had CH since I was 19. I'm so sick of Doctors who
say "We don't know what causes them and we don't know how to cure them". I use
to be an acute sufferer and in the past year my pain has become chronic, with 1-4
headaches every day for a year. I've tried most every medication out there with virtually
no success. I've had some relief with Prednisone but I can't handle the side effects. I've
spent a fortune on things that weren't covered by insurance but as you all know you'll do
anything to get this nightmare to stop. I was thinking about trying the Diamond Headache
Clinic even though I would have to travel to get there. Is it worth it? I also have an
appointment to try acupunture on Thursday. Has anyone had any sucess with bio-feedback?
I'm sorry to be so long winded but these things have taken over my life. It has just
gotten worse with time and I never really understood depression until this past year when
I would spend night after night in my dark bedroom with ice packs on my head and neck just
praying and crying my eyes out. I think about dying all the time, it's gotta be better
than this. Has anyone noticed a change in your headaches when you are in different parts
of the country? It's really strange to me that my headaches became daily right after I
moved to Kansas. Thanks for letting me vent.
Virginia Acosta <vacosta@informix.com>
Overland Park, KS USA
Tuesday, May 25, 1999 at 12:54:37 (EDT)
Hello: Iam new to this site and I am glad I found it. I got attacked for the first
and only other time about twelve years ago, when I was twenty-eight. At that time I didn't
know what was wrong, I had all sorts of tests done and everything turned out fine. I was
two full weeks in agony, non stop. The only relief I could get was the tylonol #3 which I
was prescribed for the pain. It said to take one but I had to take three of them to get
any relief. After fourteen days I got into a warm bath at the suggestion of my wife(who
was then my girlfriend) and all of a sudden the pain just left. It was the most wonderfull
feeling to have the pain just go away. That was twelve years ago and last week it came
back. Only one night has it been really bad, the rest of the this week it is constant but
tolerable. I got some analsol 30s for sleeping and I found this site. One suggestion seems
to be working and that is the water therapy. The pain is constant but tolerable. My doctor
didn't even suggest any of the medication that I have seen on this site. I am glad for the
people on this site though, it has helped me immensely in the past week, thank you all.
Glenn
G. Collier <glenn collier>
St. John's, nf Canada
Tuesday, May 25, 1999 at 09:02:25 (EDT)
Well gang...from all i've read in these comments.... i appear to be the
"average" clusterheadache suffer! Geez.....these things can be tough to live
with, huh!! Mine started about 4 years ago...when i was 47 years old....I've been
fortunate that i was diagnosed acturately by a neurologist..... who also was wise enough
to admit he didn't have any more answers for me after three months of trial and error
treatment with no relief. He referred me to the Thomas Jefferson Hospital.....Headache
Center.....in Philadelphia, Pa. Been routinely going there for the last 3 1/2 years.......
I've been pleased with my treatment....and have been able to remain headache free for up
to 3 continuous months........ presently i'm taking Verapamil.....plus 400 mgs. of vitimin
B2 daily. Unfortunately... it appears my run of "good fortune" has come to an
end......looks like the next cycle has begun. I suppose this is a battle we shall continue
to wage throughout our lifes, huh? It's graditfying to know that this site exists for us
fellow sufferers. Just passing on treatment information between eachother can prove a
great sense of hope to those suffers who may believe there are no treatment options left
to try. So keep those comments and treatment information coming..... you are providng a
much needed soruce of hope to your fellow "cluster" sufferers! And
remember.......Never give up!!!!!
Mark Harnish <MEH1275@aol.com>
Upper Darby, Pa USA
Monday, May 24, 1999 at 22:09:24 (EDT)
Love this Site. Have had chronic CH for 28 years now. At first I never wished these
headaches on anyone, but now I wish 50 or more doctors get them so they know what's it
really like to have Cluster Headaches>>>>>25 yrs. ago we suffers played the
Drs. just to get pain pills 4 or 5 diffurent ones a week. Right now i'm in a full blown
cycle i'm taken 1500 mg of Lithium a day and Stadol IM for pain.
George Snelson <gjsnelson@centuryinter.net>
Cherokee Village, Ar. USA
Monday, May 24, 1999 at 19:54:46 (EDT)
I'm not really an emotional type though i can shed a well deserved tear now and
then, but i gotta tell ya when i saw this sight i got a little not in my throat.
Phillip Hubbs <hubcaps57@yahoo.com>
shelbyville , in USA
Monday, May 24, 1999 at 12:28:09 (EDT)
I am glad this site exists. I suffer these damn things every fall and have for the
past fifteen years. They run about two to three weeks, occur, three times a day and last
for as long as twenty minutes. When the episode is over, I am so drained that all I want
to do is sleep (after feeling like crying)! In the fall of 1996, I didn't get a single
episode and I believe it had to do with me being on my honeymoon in th Bahamas for my
annual attack time frame. I really thought I had rid myself of these damn things, but fall
1997, they came back. For me it may be hereditary because my paternal grandfather was a
sufferer. The only medication I have ever used was the Lidocaine nasal drops which usually
work provided you catch the attack at its onset -- impossible to do though when these
things wake you out of a dead sleep. I love the fall, but only the first week of September
and the last week of October. In between, I HATE it and unfortunately, my wedding
anniversary is right in the middle! If I had my way, my wife and I would go back to the
Bahamas every fall! Anyway, thanks for this option to address my fellow-sufferers...we're
all good people who don't deserve this crap!
Mike Brown <mike.brown@chamber.state.ny.us>
Albany, NY USA
Monday, May 24, 1999 at 10:14:11 (EDT)
Great efforts, my friends! I highly appreciate the efforts and times you have put so
far in the construction of this highly valuable site. The idea itself is among the very
few priceless and sublime humane touches in this era. Besides releaving our damned pains
by knowing we are not alone in our fight against clusterheadaches, this site gives us hope
and more courage to steadfast and persist in the battle against cluster headaches. It
gives us more security and chances to share ideas with friends with whom we have much in
common. I wish you all success
Abdulrahim Al-Hasan <tworld@palnet.com>
Ramallah, Palestine
Monday, May 24, 1999 at 02:37:00 (EDT)
ive met a very nice gentleman on the computer who is a sufferer...wanted to learn
more of what he experiences....
karen <bacio@idirect.com>
toronto, on canada
Monday, May 24, 1999 at 00:05:35 (EDT)
I tip my hat to the creator of this site...and thought I'd add my little tidbit of
information about these horrible headaches. I have had them for the past 16 years...at
first diagnosed as severe sinus infection LOL After taking antibiotics and as many as 25
pain pills a day, with no relief, I went to another doctor. After telling him my symptoms,
he handed me a medical book with Cluster Headache showing. This was as close to describing
my pain, as if I'd written it myself. I was put on medication.....Prednisone, Sansert, and
Indocin. I went through agony the first few years. My first headache period lasted 9
months...I had only minutes, during each 24 hour period, in which I had only minimal
relief. After 3 months, the headache was back. I went through this for maybe 4 yrs....lost
track of the time. The medication I was on made me literally walk into walls for some
reason. I was a mad wreck.....went through the same head banging, punching routine I've
read about. Finally, a neurologist asked me if I was still having the headaches. He
prescribed Amitriptyline...small dosage gradually working up to 50 mg. taken at night
before bedtime. It took awhile for me to get to the point where I was dealing with this
curse....but after reaching a maximum dosage of 50 mgs...I had relief for the first time
in years. That has been over 10 years ago. Since I am a chronic headacher, I needed
something that could restore my sanity. Thanks to this....MY....wonder drug...I am
relatively pain free. I used to go off the medication after a period of time (I can tell
when it is there because of a sensation in my temple of the side affected) but only to
resume it a short time later. I take this medication still, every night almost, without
fail. This is the only way I can remain relatively pain free. Sometimes I think I can stop
taking it....but only to find myself having it come through. So back on the medication I
go. Although I can still feel the headaches sometimes..it is not so severe that I can't
function...and they can't get full blown as long as I'm on the medicine. My wish for
everyone with Cluster Headaches, would be for everyone to get the same relief that I have
found through Amitriptyline. I know that all do not respond to the same treatment as
another....but I honestly do understand the pain each of you have and wish you much luck
with controlling them.
Jan <jan@hoisington.com>
Hoisington, KS USA
Sunday, May 23, 1999 at 18:04:28 (EDT)
Hello everyone! I'm a ten year old female who just started having CH a couple months
ago. I know they are clusters because my mother suffers too. Does anybody else have a
family history like we do? Does anybody have any suggestions for medicine that would be
safe for me? Let me know, thanks.
Cassie Gabelt <sgabelt@neo.rr.com>
Alliance, OH USA
Sunday, May 23, 1999 at 17:56:47 (EDT)
Well its just so nice to really knoe that I am noe Nuts like i had thought, that
this really is a condition. I just found out 2 days agofrom the Dr what CH headaches are..
After years of attacks.. What a great web page... I am being treated with Imatrex and
Oxygen in the Dr's office and just the Inatrex tabs (25mg) at home.. Any information and
anyone who wishes to discuss of need support please wirte.. I am 30yrs old, married male
with one stepson... My wife finally understands after seeing the web site.. THANK YOU !!!
Charlie Fagin <Jfagin@gte.net>
Bradenton, Fla USA
Sunday, May 23, 1999 at 09:51:07 (EDT)
Hi all those that suffer the dread of the onslaught of the recurring "eye
ache" I have just found this site and am currently experiencing another session of
headaches. I have been suffering with these for the past 30 years and this session has
started with a lapse of 2.5 years since the last ones. I am currently using cafergot to
ward off the attacks but have to take one right as soon as I feel them coming on. If I
don't get to them right away nothing will stop the pain other than a shot of demeral at
the local hospital. Lets talk What are you taking and does it work..............Help
Andy Logan <logana@kingston.net>
Napanee, Ont Canada
Saturday, May 22, 1999 at 21:23:34 (EDT)
I have joined the ranks of Cluster headache sufferers. I started having severe pain
on the right side of my head in Feb. of 1998. It throbs and pulsates in the temple area
and stabbs sharply in the upper back area. I get nautious and vommit. I get blurred and
blind spots in my eyes and my vision is reduced when I have my headaches. I get vertigo
with them the majority of the time. I suffered from Feb. to Sept. with the horrible pain
every day. Never letting up. I saw a chiropractor, dr., eye dr., ear specialist,
neuologist and had MRI's and about every major test done possible to be told I suffer from
cluster migraines. I am the mother of three children and try to work full time. It is hard
with the headaches. I am so thankfull to God for this website and others that are devoted
to Cluster migraines. I felt so alone until I discovered the sites. My dr. said I am part
of the 1% of women that get these. I started having more headaches in Feb. 99 to April 99.
My dr. just put me on Midrin to abort the headaches when I have them. We are considering
oxygen as well. I may start using that in a few months if the Midrin doesn't work. If
anyone wants to contact me with questions feel free to do so.
Karla K. <karlaski@juno.com>
Madison, WI USA
Friday, May 21, 1999 at 21:45:38 (EDT)
I also have Cluster Headaches. I have progressed from Acute to Chronic Attacks and
suffer from them daily. My first headaches occured when I was 22. I am now 40. It is hard
to cope with headaches, but you can. I am proof of that.
Bobby Gilliam <bobby.gilliam@mciworld.com>
Antlers, OK USA
Friday, May 21, 1999 at 18:29:32 (EDT)
I am a 24 year old female & have been suffering from severe, constant headaches
for the last 2.5 months. I read the info regarding cluster headaches & the description
is somewhat like what I have been experiencing. I have been going through the rounds with
the doctors trying to find out what is going on. None have been able to give me any
answers, so I am wondering if my symptoms sounds familiar to anyone: I woke up a few
months ago and my R eye was solid red. A few days later I started to experience pain in my
eye. A week later I started to get headaches "in my eye" and the surrounding
area. The headaches have gotten worse since then. They are constant every waking moment,
differing in severity. My head feels like it is heavy. The pain is usually centered in the
middle of my head & eyes. At times I feel like I have something like a balloon
expanding in my head. There is no pattern to the pain. They can be severe first thing in
the morning or at 5pm. I have not had one day without a severe headache. By the middle of
the day I am exhausted from the pain. I have not been awakened from a headache, but have
one the minute I open my eyes. The doctors checked for pressure & all that good stuff.
Got the CAT scan of the sinus area. They will be doing a MRI in a few weeks. I am still
seeing a general doctor (originally an opthamologist). The other thing that has happening
when all this began was my loss of vision. The doctor says they are not related, but it
happened at the exact same time the eye redness and headaches came. I have lost -1.25 in
my R eye & -.5 in the other since my exam 2 months prior. I guess all these things
have really scared me. The doctors have been "less" than helpfull in helping me
understand what is going on. My current doctor feels they are "A-typical"
migranes. But in all I have read, my systems are nothing like them. From what I have read,
my systems sound most like the cluster headaches. If anyone could give me some feedback on
my symptoms, I would be appreciative. Thank you! Michelle
Michelle Carper <ccarper@hotmail.com>
Colorado Springs, CO USA
Friday, May 21, 1999 at 16:53:15 (EDT)
What a wonderful service you have provided to all of the CH sufferers in the world
by organizing this website. I have had this ungodly condition for 5 years now, and would
give anything to eliminate it from my life. I am a 46 year old male and I fall into the
category of a chronic sufferer. I have tried almost everything on the face of the planet
and have spent mucho $ on diagnosis and treatment. When I first started getting the
headaches they were mild but annoying and they would last for three months and then go
away for 1 year. However for the past three years they started to cycle in the Fall and
would last for 6 weeks with the most excrutiating pain in my right eye that is beyond
mortal comprehension. The eye stab pain almost always came at night after I would go to
sleep, and would last anywhere from 45 minutes to two hours. I finally saw a neurologist
from the Mayo clinic who understood the condition and who prescribed Verapamil as a
prophylactic to break the cycle, and also imitrex to reduce the pain until the cycle was
broken. That combination of meds seemed to work up until three weeks ago when a new cycle
started that is completely out of sync with my original cycle. I am now getting the
headaches in the Spring instead of the fall, and they are coming in the early afternoon as
opposed to in the evening. I have been on 270 milligrams of Verapamil for almost two weeks
now, but the headaches are continuing although infrequently. However the eye stab pain is
much more severe (if that is even possible), and the duration is longer. The imitrex use
to counter the pain in 10 -15 minutes, however it now seems to have little affect. I am
seriously considering the Lithium as a possible alternative, and would appreciate
information from anyone out there who has had experience with this medication. My life is
being controlled by this affliction, and I don't know how much more of this pain I can
take. It is wonderful to be able to communicate with others who are suffering from this
relentless torture. My heart and prayers go out to each of you, and I hope and pray that
someday a cure is found for all of us.
Jim Oster <Jimmyo423@aol.com>
USA
Friday, May 21, 1999 at 15:37:29 (EDT)
Just started getting them again after about 19 months of remission. I thought they
were gone, but after reading some of the messages, I now realise that my relief was only
short lived. Geez I hope these don't start again..
Richard <rbr333@earthlink.net>
Worcester, MA USA
Thursday, May 20, 1999 at 23:26:39 (EDT)
Hi, i had just goten back from a doctors apt, when i decided to look up the Meds, he
has given me. Midrin and Pamelor. Well i found you all.... WOW unreal.... The Doctor said
i have something called ICEPICK MIGRAINES. HAs anyone ever herd of this type? is it the
same as CLUSTER? Do you get Sharp Pains that feel liek somebody is Sticking a knife in
your brain. Does it make you have blurred vision???? I alsi am Tierd ALL the time.
UGGGGHH. and i feel disorineted. i am 33 and a mother of 4 children, and I work FULL TIME,
i just go on....... Headaches for HUMMM??? 5 years now.. But now they are getting worse
and worse.... Do you ever feel like you just had a freaking stroke????? The pain is just
too much sometimes, and they come on All of a sudden, or they just stick around for weeks
lurking, to BOOM you again,,,, I would love to hear from you. Thanks for letting me VENT.
Jody <jodylynn84@hotmail.com>
FL USA
Thursday, May 20, 1999 at 15:05:33 (EDT)
this web site has really helped me. i thought i might have something really wrong
inside my brain, but it sounds like CH.my appt. with the neurologist is may 27. ill keep
ya updated. thanks michelle
michelle denney
new castle , in USA
Thursday, May 20, 1999 at 11:39:01 (EDT)
How bitter/sweet it is to find a place with so many people who can understand. My
condolences to you all. I am 27 and was diagnosed in 1990. I've been through most of it,
breaking down in front of my family, rushing to the ER to be treated like a junkie and
most of the meds I've read about Imitrex works well for me but I have some serious
concerns about the number of shots I am taking. Is there anyone out there taking more than
two a day for extended periods of time? Sorry to be so long. Heres hoping we all sleep the
night through -Greg
Greg Hammonds <hammonds@texas.net>
Houston, TX USA
Thursday, May 20, 1999 at 03:35:07 (EDT)
I am only 18 years old and I get awful cluster headaches. As I entered high school I
started to get terrible headaches. The doctors put me on tons of different sinus
medications, gave me reading glasses, blammed the headaches on inner-ear infections and
stress, and put me on so many crazy diets to try to find what was causing my headaches.
Unfortunately most of these "cures" only made the problems worse. My headaches
would last hours and to keep myself from banging my head into a wall or clawing my eyes
out I spent most of my time trying to sleep them off. Now finally with the correct
diagnosis I am seeking relief from my pain with the help of a wonderful doctor. It is nice
to know I am not alone, I keep everyone that is suffering from headaches in my prayers and
urge you to find help. Life does not need to be so painful!
Heather <vetwanabe@hotmail.com>
Palmdale, CA USA
Thursday, May 20, 1999 at 01:11:00 (EDT)
I have been suffering from what I thought was "sinus" headeaches for about
10 years. With the help of my doctor and doing some research I think that what I have
might be cluster migraines. My symptoms are different though that what I find in other
descriptions. My problems starts in the upper shoulder just below the neck and then works
its way up the neck and then into the facial area. Sometimes if I can relieve the symptoms
on one side of my neck/head it moves to the other side. These headaches usually last
around three days. Help me to understand if this might be a cluster migraine? My symptoms
don't follow the usual things I've read. I have found them to be hereditary though. My
mother had them for years and my sister has had pretty much the same symptoms for about
two years now. Thanks for any information you can give me. B.
B. <bmarkley@lawrencechamber.com>
USA
Wednesday, May 19, 1999 at 23:27:27 (EDT)
I have been going all over the country to find a diagnosis for my pain symptons,
which have been going on for the last year. A neighbor of mine (he is a vascular surgeon)
did some research on my symptons and told me to look up "cluster headaches" on
the internet. I diagnosed myself from your web page, and have an appointment tomorrow with
a pain specialist for treatment. Your web site is a God send for me. Thanks dearly. Jane
Jane Staruk <StarukPaul@aol.com>
Boynton Beach, FL USA
Wednesday, May 19, 1999 at 15:40:47 (EDT)
i am a cluster sufferer and have been since 19. i'm 35 now and they get more intense
as i get older.i'm in the bigging of a new cycle. last night i had 3 of them. i'm not
ready to go through one more episode. sometimes i think death may be the only alternative
to peace. yet my desire to live the life that i love some how finds its way to stay
another year. thanks for listening!! but i know that's all anyone can do.
ROBERT JONES <EJONEROB>
NEWPORT BEACH, CA USA
Wednesday, May 19, 1999 at 11:11:50 (EDT)
Thank you very much for the opportunity to join.
Francis Kish <ffkish@idx.com.au>
Campbelltown, NSW Australia
Tuesday, May 18, 1999 at 23:28:38 (EDT)
My husband Danny, just found out yesterday that his severe headach attacks are
called cluster headaches. He has been experiencing these headaches off and on for the past
12 years. He had stopped having the headaches about 5 years ago and this past year the
headaches have resurfaced. He is now 38 years old. His attacks come so quickly and with
such a powerful punch, he is totally incapable of doing anything but sitting there and
hold his head. He has been taking all types of aspirins, motrin, vicodin, etc. You name
it, he's taken it. He finally went to the doctor on 5/17/99 to discover the name behind
his condition. His doctor has ordered the oxygen tank and tight fitting mask. For those of
you more experienced with the condition, could you please give us some advice on the do's
and don'ts of using the oxygen and any other pertinent information you might be willing to
share. We are very eager to learn more about the condition. Thank You.
Angie Williams <awilliams@concocement.com>
Vacaville, CA USA
Tuesday, May 18, 1999 at 18:53:47 (EDT)
Howdy fellow CH'rs (c: I just found out yesterday that I do not have a brain tumour
or nightly strokes...these have been going on since 1981 (I am 43). I got sent home from
the ER with something that seemed to work (for one night at least, so far) which is a
steroid and an oxygen bottle. The doctor said I was a textbook example of cluster
headaches. I wonder why all the other dozens of doctors I have seen never figured that
out? (not that I am bitter...hehe) Anyway, I am glad at least that this incredible thing
found a name and that I have found somewhere to share. As you all know, nobody believes
the description of the pain. Thanks.
Geoffrey Tooill <wyzyrd@disinfo.net>
Wichita, KS USA
Tuesday, May 18, 1999 at 13:32:50 (EDT)
I suffer from Cluster Headaches for 18 years from 17 years old. I just knew the
correct name "CHs" recently. I suppose I suffer from Migraine past years.
Kaedar Ferng <fkd@pagans.org>
Taipei, Taiwan
Tuesday, May 18, 1999 at 09:48:55 (EDT)
DJ, You're doing a great job! We "clusterheads" depend on you, and this
site, for current and accurate info on "the curse." Last year, while going
through various URLs on the subject, I happened-on a regional listing of physicians
"specializing" in the treatment of clusters. To my dismay, I find that I have
"lost" that bookmark. Does anyone out-there know a/the URL for cluster
specialists, by region or city? I read everything I can find about clusters, but I always
begin at Thanks, ..d
David Key <davidkey@ionet.net>
Edmond, OK USA
Tuesday, May 18, 1999 at 09:44:05 (EDT)
I just got done having another horrible cluster headache for the 2nd time today.
I.ve hadn't had any relief since thursday of last week. I was sitting at the computer
looking something up for my friend and i decided to look to see if there was naything on
clusert headaches. Boy, I'm I relieved that there are other people going through the same
thing as I am, and were able to discuss it. I was just diagnosed as a chornic cluster
headache suffer, and pulled out of work. I just hope there will be answers for all of us
one day soon. Carla
Carla <carla.doucette1@worldnet.att.net>
Highland, NY USA
Tuesday, May 18, 1999 at 02:05:37 (EDT)
Hi, What a great site! I'm 30 years old and have been suffering from cluster
headaches ever since I was about 5 . My pain doesn't seem as intense as what I have been
reading on this site but I do have the characteristic ice-pick stabbing pain in the eye
region, and it only affects one side of my head. My symptoms include a watery eye,
sensitivity to light, and a slightly runny nose. When I was in my teens I had more severe
and more frequent attacks. At that time I did not pay attention to any patterns. Now I
notice a hormonal association. I always get a very mild attack about a week or so before
my monthly period begins. I've started to keep track of the intensity of pain as well as
what side of the head the pain is on. Of course , just when I think I have a handle on my
headaches, they surprise me. I have been suffering from a CH for the past few days- the
reason by which I have sought out this site! -Pam
Pam S <hamster555@yahoo.com>
San Francisco, CA USA
Monday, May 17, 1999 at 17:30:11 (EDT)
I am still looking for a preventative method to help decrease the frequency of my
headaches
Laura <trxt@teleport.com>
Cornelius, OR USA
Monday, May 17, 1999 at 17:17:49 (EDT)
I am glad to find a page that deal with these painful headaches. Thanks!
Marvin Brown <NedMar@aol.com>
Baltimore, Md USA
Monday, May 17, 1999 at 00:16:02 (EDT)
I didn't even know a site dedicated to this even existed. Thanks! Many of my friends
and associates don't understand what I'm going through. My guess is that since they can't
see anything physical (open bleeding wounds, missing limbs, etc.), it may just be in my
"head". Well, now I can show them something that can educate them, better then I
could alone. Again. Thank you!
Geronimo Miranda <medcart@hotmail.com>
Hagerstown, MD USA
Sunday, May 16, 1999 at 18:15:09 (EDT)
Very interesting, be it very technical info. I had two bouts of CH, one about 6
years ago, and one last year which lasted 6 months. Endomethacin seemed to control it
(after taking 6 Imitrex injections a day for weeks), and since Jan 99 I am free of it. Now
I feel a dull pain coming back behind my left eye, and I worry it may be on it's way
back.I haven't seen my doctor yet, and am not looking forward to taking all that medicine
again. Any diets I should try, I wonder? ww
Willem Wijnbergen <wilwijn@hotmail.com>
Los Angeles, CA USA
Sunday, May 16, 1999 at 14:37:17 (EDT)
Very interesting, be it very technical info. I had two bouts of CH, one about 6
years ago, and one last year which lasted 6 months. Endomethacin seemed to control it
(after taking 6 Imitrex injections a day for weeks), and since Jan 99 I am free of it. Now
I feel a dull pain coming back behind my left eye, and I worry it may be on it's way
back.I haven't seen my doctor yet, and am not looking forward to taking all that medicine
again. Any diets I should try, I wonder? ww
Willem Wijnbergen <wilwijn@hotmail.com>
Los Angeles, CA USA
Sunday, May 16, 1999 at 14:33:12 (EDT)
Hello..I have been diagnosed with cluster headaches within the last six weeks. These
attacks are not altogether new to me in that I believe previous bouts may have been
misdiagnosed. This condition is extremely painful and debilitating. I would be interested
in hearing from anyone regarding how to manage work and clusters.
Dan Holton <dan1049@msn.com>
Nashville, TN USA
Saturday, May 15, 1999 at 23:25:35 (EDT)
The only books that should be written about cluster headache should be wtitten by
people who actually suffer from them. There is no other way to describe the pain a
sufferer goes through.
Howard Michnich <rugman@dreamscape.com>
Oswego, NY USA
Saturday, May 15, 1999 at 06:48:18 (EDT)
It's great to find this page! I am a relatively new sufferer, having only
experienced CH for about the last 5 years. I go for 18-20 months pain free, but then
another cycle starts. Originally diagnosed as Trigeminal neuralgia. Prednisone worked on
the second round, but switched to sansert for the third one. Now into my fourth cycle of
attacks. Sansert helps some, but not completely. Does anyone know of relatives with CH? My
oldest daughter (14) has recently started having H/A that sound frighteningly familiar. Is
this hereditary? I made it through 35 years before "discovering" this maddening
pain. I would like to help my daughter prevent this.
Dave Watkins <d1watkins@oh.verio.com>
USA
Thursday, May 13, 1999 at 17:05:59 (EDT)
Well into week three of my cycle. One at about 7:45 am, one at about 130:pm. Today I
got left to work about 45 minutes later than usual, and my "8:00am" cluster
occured more like 8:40am hmmmm....interesting. I am still on Amytriptiline preventative
the dosage went up to 50mg (used to be 25 for 1.5 years). It does not seem to be working
at all, still get my daily ritual installments of pain. I am trying this different
abortive medicine called Isometheptene.....If I take it very early upon first sign of a
cluster, it seems to kill it in 15 to 25 minutes. I guess thats better than the normal 45
minutes to 1.5 hour episode. Have taken this abortive stuff for one week and have allready
used up my 40 pill prescription. Yesterday however, the medication had zero effect...Had
one hellacious cluster for 1.5 hour even after taking the pills at first onset. I am
starting to think that this pain is just going to remain with me for the rest of my
life....Enjoyed the 1.5 year pain free time while it laste.
Joe Cavazos <jose.cavazos@jsc.nasa.gov>
Houston, tx USA
Thursday, May 13, 1999 at 16:14:48 (EDT)
I have been suffering with cluster headaches for over 35 years. Have probably taken
every conceivable prescription available. Last bout was "muffled" with predisone
and verapimal.
Michael Currao <currao@aol.com>
Lake Winola, PA USA
Thursday, May 13, 1999 at 01:17:22 (EDT)
Hi C H group i have been suffering with cluster headache for about 10yrs. I take
wigraine and depakote, the wigraine is for a attack the depakote is an abortive. I am glad
to have this page so I can talk to people like me who suffer from C H. I have tried other
medicines, but these two work better than any I have taken. Thank you for being there.
E-mail me anytime I'll be glad to here from you.
Al Wright <AWJPCLEO@aol.com>
Fayetteville, Ga. USA
Wednesday, May 12, 1999 at 22:08:13 (EDT)
I have suffered for a little over thirty years.. Anyone who has this pain can
honestly say they have had a small taste of hell.
C. R. Potter <cpotter@hiwaay.net>
scottsboro, al USA
Wednesday, May 12, 1999 at 21:59:40 (EDT)
Hello Everyone, I'm sitting here with a stress headache, one I can treat with
Tylenol, wondering "How the HELL you all survive this madness? I had to take Terry to
the E.R. last night and that's when my headache began. I'm so incensed (correct spelling?)
at the complacency that is exhibited each time it gets so bad we have to go there. If they
don't treat you like a junkie for knowing about specific drugs that work for you, they
think "Oh,it's just a migraine,let's put him in the dark and close the door,He'll be
ok!" We got there at 8:30,and it was 10:20 before they came to give him a shot of
demerol,and that was only after 2 calls(made by me) to his neurologist and my standing
outside the door watching they're every move. I guess I bugged them,but so what!!!!! We
all need to educate the general public about clusters but most of all, we need an
organization of DOCTORS who can help educate Physicians assistants,nurses,all Emergency
Personnel,including E.M.T.s and whoever treats people, that these are simply NOT JUST
ANOTHER HEADACHE..... Sorry this is so long, I needed to vent, and hopefully get some
feedback on what you guys think! Maybe there's a Politician out there with clusters who
might want to help with some legislation? I pray for you all Alice
Alice/Terry's wife <jthorn@bellsouth.net>
Cumming, Ga USA
Wednesday, May 12, 1999 at 18:51:09 (EDT)
Please try Depakote (250mg). Along with Stadol-NS & Imatrex. Best wishes and may
God bless you all. Walt
Walt Boulware <walterb@awod.com>
Charleston, S C USA
Wednesday, May 12, 1999 at 18:07:15 (EDT)
Hello all you fellow C.H. sufferer's I have had them for 25 year's tried every drug
on the market, but i have just found agreat doctor at york district hospital (dr fonter
basser a llady doctor) she has given me steroid's which for the first time in my life i
have had some success, i also take imigran which i found very good, also for the first
time i have a doctor who really understand's the pain and sufferering the beast put's me
and my family though, just for interest today ihave filled a 50 page audit form run by
glaxo wellcome on the effect's of the drug's and how it affect's my life and lot's of
other stuff as well so let's hope their will be more research on the suject, i would also
like to say what a great site this is just to know i am not alone is a great help good
luck and have pain free day DAVID.
DAVID HARDY <D.G.HARDY@BTINERNET.COM>
SKEGNESS, ENGLAND
Wednesday, May 12, 1999 at 14:10:59 (EDT)
Hi; I have suffered with Cluster for 12 years!! I am now going through a cycle where
they occur almost every other day and come in waves lasting several hours over many hours.
I was apatient of Dr. Bernard Swerdlow for 10 years until he retired two years ago ( he
passed away last year) Dr. Swerdlow was a true specialist in all types of headaches and
wrote several books on the subject of Cluster. I need some HELP in finding specialist in
central Florida. I have been on just about every medicine known to man over the years. I
had a very bad reaction in the hospital to Imitrex so have been unable to take the
Triptans. So glad to find this site!! Hope someone is working on that magic pill we all
sre seeking!!!! Best to all, Harry Trevathan
Harry Trevathan <haptre@iag.net>
Orlando, FL USA
Tuesday, May 11, 1999 at 16:42:58 (EDT)
This site has been a great help!!! thank you and God Bless....
Lydia Parlier <lydia.parlier@mindspring.com>
Decatur, al USA
Tuesday, May 11, 1999 at 16:41:15 (EDT)
My Doctor thinks I may have cluster headaches. I have a MRI scheduled soon. I have
been having terrific headaches for about 2 weeks. I consider myself pretty pain tolerant
but today I just couldn't take it anymore. My sister has had cluster headaches for over 20
years. I never appreciated the agony she was in until the last couple of weeks.
Wilbur <wilber@netonecom.net>
Cadillac, mi USA
Monday, May 10, 1999 at 23:11:49 (EDT)
What a helpful forum! Bless you all for sharing your histories! There is comfort in
knowing we're not alone. I am currently enjoy a respite from the brutal cluster headache
attacks. What I learned from reading notes today is that I may not be out of the woods for
good, but maybe I can offer some perspective to female sufferers in particular with my
story. In my teen years I started having classic migraines and continued on with these
until "the change" in my early 40's when the headaches miraculously stopped.
This definitely offset some of the other effects of middle age! Two years into the change
process I was put on hormone replacement therapy - estrogin and progesterone. Though I
didn't see the connection at the time, this is when I started getting cluster headaches.
Didn't know what they were and was stunned by their intensity. Didn't get much help from
doctors. The one who said my symptoms certainly supported the diagnosis of clusters,
concluded "women don't usually get them." Anyway, you all know the drill of
seeking help for the pain. For me, oxygen is the only thing that gives me relief. None of
the drugs and preventatives touch the pain. But, here's the good part - last June I asked
my Gyn if I could go off the hormone replacement therapy because I suspected there was a
connection. He switched my meds to a new drug,Evista, which supposedly has the advantages
of traditional HRT but doesn't treat the unpleasant effects of menopause. But it has been
a great trade off. My headaches have been greatly minimized. The headaches, for seven
years, usually ran from late winter to the fall. This spring I experienced a much milder
recurrence, treatable with the oxygen - if I get to it quick enough. I really believe
there is a connection with the hormones. Maybe this year has just been a fluke, but I'm
hopeful - and currently enjoying life again!
Sharon <Sacrecouer@aol.com>
Dallas, TX USA
Monday, May 10, 1999 at 10:10:02 (EDT)
Have had CH for 3 years now. I feel sorry for those of you that have had them
longer. I'm thinkin of ya, take care
Denny K.
J-ville, oh USA
Monday, May 10, 1999 at 02:26:30 (EDT)
I have had CH cycles for over 25 years. Starting as a teenager until now (I'm 45).
At first they would come every 6months like clock work (usually fall and spring). since
turning 40ish they now come approx. every 16 to 18 months. I have tried everything one can
think of. The waking up in the middle of the night is the worst. Many nights I have gotten
up from my bed and laid my half naked body on the cold tile floor. For years I have taken
Wigrain. Now I'm on Imitrex and it doesn't seem to be any better than anything else I've
taken. As I get older the pain not only effects the eye but the ear and the back teeth on
the side the CH is on. My CH always hits the left side of my face, and I only hhave had
one cycle on my rights side. I can always tell when a cycle is about to start, as my neck
becomes thight for approx. one week. During the cycle I sleep with ice packs on the back
of my neck and the left side of my face. I take a Wigrain just before bed or muscle
relaxant and have been able to sleep through the night 5 out of 7 nights in the week. I
feel for all of you who have this SOB. The 2,3,4 attacks a day are hell. Your history in
these pages have been helpful to me and my wife. If there was one wish I could be granted
in my life, it would be a CH free life for all of us.
Bruce Bell <bruce.bell2@gte.net>
Portland, OR USA
Saturday, May 08, 1999 at 23:27:04 (EDT)
I have suffered with cluster headache for some thirty years, (since age 14). It used
to come twice a year, last a couple of weeks and each headache would last only 15mins to
one hour. Over the years the pattern has gradually changed. I now have gaps of at least 18
months between clusters, but they last longer (6 - 8 weeks) and individual headaches last
for hours and are excruciatingly unbearably painful. CH was only actually diagnosed six
years ago. My GP is sympathetic but not very knowlegable. He has prescribed every kind of
migraine treatment, all with little or no effect except for Imigran (sumatriptan)
injections which are an absolute godsend. At last, (after reading stuff here and realising
there is more that can be done) I have started attending the Headache Clinic at Charing
Cross Hospital. The sense of relief that came from talking to a doctor who knew and
understood the condition was indescribable! I have just started taking Verapamil - too
early yet to know it's effect. I live in hope and look forward to the end of this cluster.
Margaret <jpend@globalnet.co.uk>
New Malden, Surrey, England
Saturday, May 08, 1999 at 19:13:28 (EDT)
I did a search today about these cluster headaches because I am having an
unbelievable headache- I had one worse than this 2 weeks ago and had to go to ER for a
shot of Morphine. Oh now my dauhgter just walked in the door and wants the computer.
Sherry Godat <Shercat1@AOL.com>
Orange, Ca USA
Saturday, May 08, 1999 at 18:43:04 (EDT)
I read this message from another wife of a Cushterheadache suffer and I thought,
that our life again, after over 10 years and the headaches are back even worse. I could
not have described the hell any more clear than she did being..... "...I've seen him
walk through the hallwall (holding onto the wall for dear life) with his head cocked to
one side and walking like a 100-year old man. I've seen him cry, begging it not to get too
bad. When I have driven him to the emergency room he gripes about my driving or why I am
driving on the street I know to get us to the hospital. and he's crying all the way. I
know that he will do ANYTHING - ANYTHING to get rid of this pain. I can't believe that
most doctors don't realize this - maybe they'd like to spend a couple of nights at my
house and see what he goes through !!! When he's having the series of headaches he won't
sleep because he knows that he will wake with another one - what a terrible, scary
feeling! Thank God I don't suffer from these headaches - but I feel so helpless when it
comes to comforting him. After a while it starts taking it's toll on me and our children.
I dred for the night to come - since that's when most of his headaches reocurr and we
start all over again!" - Loretta (wife of a sufferer)
Mrs. Gary Tidwell <shuby@flash.net>
Saginaw, TX USA
Friday, May 07, 1999 at 22:56:15 (EDT)
I am a practicing Internist and Medical Administrator for a primary healthcare
management corporation and treat cluster migraine patient and am myself a common migraine
patient. My fraternal twin brother, also an Internist, suffers from common migraines also
and so did our father. I will follow the progres of your web site and am very impressed
with the information contained within. I actually learned more here than I have during the
Diamond Headache seminars held yearly in Palm Springs. Thanks!
Christopher M. Snyder, D.O. <cmsnyder@ptd.net>
Bethlehem, Pa USA
Friday, May 07, 1999 at 16:52:29 (EDT)
I am 41 an have been having cluster headaches since I was 21. I was chronic then,
and appear now to be classic on about a 4 year cycle. I am just starting a new cluster,
the pain is not bad yet but I am starting to feel chronically tired with 1 - 2 minor
headaces per night and a 2 hour commute to work - 8.00am start. I am not looking foward to
next 3 months when I hope the pain will cease - after the cresendo of course. Cheers Tim
Tim Gallard <gallard@keira.mail.com.au>
Wollongong, NSn Australia
Friday, May 07, 1999 at 09:48:32 (EDT)
Hi,my husband has been suggering clusters for over 16 years now - returning on the
dot every two years but increasing in time - 4 months at the last count. He can have up to
12 attacks a night and some during the day. It is a totally dibilatating illness - the
pain is excruciating and the tiredness makes everything even worse. We're dreading this
Autumn as he is due to start another cycle. Good luck to everyone nad hope a cure is found
soon??
V.J. Drees <vjdrees@aol.com>
helston, cornwall Uk
Friday, May 07, 1999 at 05:42:59 (EDT)
This is the first time I have encountered this site and I am SO relieved to have a
great new source of information. I have suffered classic migraines since high school (I'm
now 47). My neurologist considered me very lucky that I "only" got them 6 or 7
times a year with most being aborted in the ER with huge injections of Demerol.
Unfortunately, after a period free of migraines for 2 years, I am now experiencing daily
(sometimes 2 a day) migraines and am concerned that I've "graduated" to CH. In
the past I have tried: Ergotamine; Cafergot and Imitrex all without relief. I am currently
taking Verapamil and Elavil as prophylactics and have been for a few years. My Internist
gave me Prednisone and Zomig which I started taking yesterday and a referral to a new
neurologist. (After the two year absence of migraines, I thought I had "grown
out" of them.) I've had one ER run last week where I got IV Dialudid, Demerol and
Compazine to abort the worst of the lot but to my amazement it came right back the next
day. I've tried Excedrin Migraine tabs and Fiorcet with Codeine with limited success. I
have zig-zag blinking type aura with blindness lasting 30 minutes; nausea; light, sound
and smell sensitivity; and pain I can't take over my eyes and on the left side of my head.
I could deal with migraines several times a year but I have had this headache for almost
10 days now and I'm starting to panic! I've been advised to soak my head in hot water; to
breathe into a hat or bag (for a bit of carbon dioxide); seek dark quiet; to drink
caffeine; to avoid caffeine; to eat chocolate; to avoid chocolate; the list goes on and
on! I've had MRIs; spinal taps; EEGs; and everything else so I don't know where to go from
here. I am going for accupuncture and to a chiropractor soon. I am really frightened
because I don't think I can stand for this to go on very much longer -- it's making me
very depressed and desperate not to mention the severe limitation of my so call life. Any
suggestions would be greatly appreciated. The doctors don't seem to really understand the
horrid pain or the terrible effects on daily living. The posting on this site have more
information and understanding than I've found in any physisian's office. It's given me
some hope that there are really people who KNOW what's going on with me. Thanks for all
the information and support -- I feel less crazy now.
Carol Konkoly <konkoly@prodigy.com>
Chicago, Il USA
Thursday, May 06, 1999 at 23:13:01 (EDT)
I've been having these babies once or twice every two years. In my case I know
prawns 'sensitise' me, and alcohol is the catalyst. I also suspect Rape Seed (Canola to
US?), since I get the attacks when it is blooming. One thing is for sure - they HURT, and
wreck my social life too... John Young
John Young <youngj@pavilion.co.uk>
Lewes, Sussex, UK
Thursday, May 06, 1999 at 17:51:09 (EDT)
Have suffered from cluster headaches for almost 30 years and appreciate the
opportunity to share/learn new remedies.
Big Bob <bigbob1@home.com>
Sterling Hgts, MI USA
Thursday, May 06, 1999 at 17:47:31 (EDT)
I've had cluster headaches on and off for 12 years and one thing they do is HURT
real bad until the medicine I take (Imitrex) kicks in. I get 99% of the headaches after
the first REM stage of sleep. I feel for you all who suffer. The best drug yet for me had
been Ergostat until they banned it from purchase. That was a life saver. Imitrex does
really well except for the 15 minute kick in period where I wallow in misery until it
starts working. I dread going to bed at night for fear that I will get one at 1:00 am. I
pray they find a cure for this dreaded ailment.
Lamar Hall <lamar.hall@worldnet.att.net>
Savannah, GA USA
Thursday, May 06, 1999 at 10:55:16 (EDT)
I am a 25 yr. eposotic suffere of cluster headaches. After they establish themselves
I have as many as 8 per day. My biggest problem is getting the quality and quntity of
medications I need. The doctors usually only give me enough to treat one-third of my
pain.So called preventitive meds never worked on me.We need the proper quantity of meds to
take care of the extreme pain.My best to you-all. Hang in there!
DonnaA <bcdetail@gateway.net>
Emmett, ID USA
Wednesday, May 05, 1999 at 19:03:45 (EDT)
I got em.
abob stebbins <abob@socket.net>
columbia, mo USA
Wednesday, May 05, 1999 at 14:15:19 (EDT)
I've been suffering from HORRIBLE headaches for so long now. I finally looked at a
medical book and found out that I probably have cluster headaches. I'm still not quite
sure if that's what I have or not. I'm only 11 and have thought up a million other excuses
over the years; but if you can tell me a good way to know if I have Cluster Headaches or
not, please e-mail me with a list of symtoms. Thanks a lot! :)
Jane <Morn2night@aol.com>
MI USA
Tuesday, May 04, 1999 at 21:19:53 (EDT)
I have been a CH sufferer for 15 years.When they first started I suffered 3 months
of headaches and 5 months off, and the cycle started again. The CH were 3 to 5 per day or
night and had a definite rhythm. After 2 years a sympathetic doctor put me on medical
oxygen which was a God sent relief. The oxygen relieved the pain in less than 15 mins. I
use 6 to 7 litres per min. flow, and within 5 to 7 mins. the pain starts to disappear. As
soon as the pain finishes, stop the oxygen or you may get what is called a 'rebound'
headache. After reading some of these messages on CH, I can only agree that the pain is
terrible and it is a wonder that any of us survive. I have kept detailed records on all my
clusters showing the date, the time, the severity of each and the duration of each
headache, along with any medication I was taking at the time. Currently, I am taking the
following medication, which has reduced, in some cases, the cluster to only 2 weeks
duration, and my 'free' period has been extended to 13 months. The medication is as
follows: 1. Verapamil - 240mg per day. 2. Ganglia Nerve Block My experience says that
regardless of what you do, the Cluster must start on its cycle. The verapamil extends the
'free' period between the clusters, and the GNB may actually stop the cluster after it
starts. I have also used cafergot to relieve the pain, and it works well for me, plus it
gives a bonus of stopping headaches for 24 to 48 hours. Very few doctors may know about
the Ganglia Nerve Block, but it is worthwhile tracking down a doctor in your area to try
it. My experience says you need a minimum of 5 GNBs on consecutive days.
Bill <jb.tait@sympatico.ca>
Burlington, Ont Canada
Tuesday, May 04, 1999 at 20:39:37 (EDT)
Hi..I have been suffering from clusters for the past 4 years and up until three
months agothe cycles were like clockwork..June/October between 7-9p.m.,had taken
varapermil..imitrex..caffergot etc.. Then something changed and I was getting 3 or 4 a day
and did not want to take steroids and did not want to take all this medicine..I felt alone
and upset by the idea of a lifetime of clusters..I looked for a web page that might help
me with the answers I was looking for, alternative medicine..I could not find anything on
your site and began a search of my own...a family member had been going to a CranioSacral
Therapist..I was will to try anything....it has been three weeks now , no headaches . She
is great! She has studied with John Upledger who is the man that discovered the
craniosacral system in our bodies..he has authored two books on this subject, Your Inner
Physician and You and another that I cannot remember right now,he also founded the
Upledger Institute in Florida. I am walking proof th this therapy works on cluster
headaches...There is help out there...Please excuse the spelling and the typo's I do not
have time to check right now but wanted to share this with you all..
Santa Fareri <Stpleasant@aol.com>
Milton, Ma. USA
Tuesday, May 04, 1999 at 16:49:43 (EDT)
In an act of frustration, I did a search this morning for cluster headaches;
searching for answers, causes, etc. My search obviously landed me here. DJ, thank you and
thanks to everyone else. I'm 43 and mine started about 3 years ago. The first wave lasted
about 8-10 weeks and then left. Like many of you, they mostly hit after I fall asleep. I
visited our GP, thinking he would tell me that I had a brain tumor. I explained my
problem, told him that aspirin, tylenol, or whatever wouldn't touch the pain and if I had
had a gun in my hand during an episode, I just might have ended it all. I think I proved
my point. Surprisingly, he did provide a correct diagnosis but I had never heard of such a
thing. They left for a couple of years and returned about 4 weeks ago. After reading many
of your comments, I feel very fortunate. Mine typically last only 15-30 minutes. To the
chronic sufferers out there, I will be praying for you to have the strength to deal with
this. I am so relieved to have found you folks and it has helped me deal with this. In
addition, this site provided a list of those that suffer from CH's and found someone that
lives only a few streets from me. I contacted him and we will be meeting in the future. As
a result of a 10 minute phone call, I feel that I have known this guy all of my life. I
know that he really understands. Thanks for reading this note and everyone hang in there.
Strong faith in the Lord and this site have helped a lot. Bill
Bill <bill@divide.net>
CO USA
Monday, May 03, 1999 at 23:32:08 (EDT)
Would like to have some input on Melatonex -- (time release) I have ben taking one a
day and with the oxygen and prayers to St Juid the CH have been staying away Just tried
this in the last mo when they started out..... Melatonex is a over the counter sometimes
called Melatonin......... Bill
Bill Kimm <mod.1k@juno.com>
Superior,Wi, USA
Monday, May 03, 1999 at 21:52:38 (EDT)
i suffered of cluster headaches from about 20 years, i'm actually 46. no way to cure
it..... the sequences are 2 months long, 4 attacks a night (and some during the day) I
think that site is very important for all the people suffering of cluster
headaches....thanks
Riccardo Pentenero <pente@inrete.it>
Torino, Italy
Monday, May 03, 1999 at 10:30:57 (EDT)
I have only found that imitrex has ever helped me
Craig Van Aken <lvanaken@sover.net>
Bennington, VT USA
Monday, May 03, 1999 at 02:19:44 (EDT)
Hi every one. Iam a consultant paediatrician and a cluster headache sufferer, what a
combination!Iam begging other sufferers to tell me what abort an attack or at least make
it bearable.I cried like a baby in front of my own children,nursing staff and
patients.Ihave had my cluster for 5 years but this year is the only time where I start to
think seiously about suicide.Can someone help?
DR.A.A.ABDELHADI <HADIHUDA@YAHOO.COM>
HORSHAM, U.K
Sunday, May 02, 1999 at 07:16:48 (EDT)
I am 44 and in the past few days have started another cluster. My headaches started
at about 21 years old. My clusters are 2 to 2.5 years apart. Prednisone has been very
effective in ending my clusters, but only with very large doses and terrible sideeffects.
I came here hoping to find something new since my last cluster.
John C. Gautreau, II <John@tggcpa.com>
Baton Rouge, LA USA
Sunday, May 02, 1999 at 03:04:28 (EDT)
I'm 27 and have had the clusters since high school. They've come at all times of the
year. I just started my first cluster in over a year and I realize how I did not
acknowledge the gift of good health and a clear head for all that time. It is comforting
to know there are others out there who suffer this pain. I often feel foolish when I
explain the situation to co-workers and friends--it is certainly a unique predicament.
I've seen numerous neurologists, including Raskin and I have come to the conclusion that
meds are only mildly effective. I might push next for some stronger pain relief. Some
recommend opiods.
Matt Delaney <icixmd@yahoo.com>
San Francisco, CA USA
Sunday, May 02, 1999 at 00:30:03 (EDT)
I've read here quite a while and have recently begun posting. Thought I'd
"signed" the guest book but guess not. I am glad to introduce myself. I am a 40
year old female who has been chronic with clusters for 6 1/2 years. I went through 3 years
without being diagnosed and thus began my research journey. I am a compurter/analyst so I
have the type of personality that must know what & why. After numerous doctors and too
many meds to remember except for the ones with really bad side effects; I found a
wonderful neuro in my city. (Well, Chattanooga, actually.) Within 5 months he had me on
Verapamil. Five months later he added Serzone and oxygen. The O2 is great! I have a large
tank (H type) by the bed and a small E-tank under my desk at work. I usually use the one
at work 2-3 times 3 days a week and need the large one 2-5 days/nights a week. At my peak
I averaged 66 headaches a month. (You know how to keep that stinking calendar!) For a year
I was down to 12 a month but now am back up to 20 some odd a month. We are trying some new
ideas to get them back down to a more manageable level. I HAVE to work, try to throw in a
little volunteer work so I schedule my life around my proximity to an oxygen tank. This
site and your stories have been a true God-send. For the longest, when the excurciating
pain was over, I felt like the loneliness was the worst. I'm so sorry you are all here too
but so grateful to know I'm not crazy and not alone. Thanks to you all from the bottom of
my heart.
Robin Dobbins <robindob@utc.campuscwix.net>
East Ridge, TN USA
Saturday, May 01, 1999 at 19:22:43 (EDT)
have suffering from cluster headaches for over 28 years
stephen williams <smwkiw@cdsnet.com>
medford, or USA
Saturday, May 01, 1999 at 17:15:16 (EDT)
cronic sufferer! (8 yrs now)
Mark Richey <msr1266@aol.com>
Marion, Il USA
Saturday, May 01, 1999 at 12:09:39 (EDT)
