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 March 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
Great site! I am a 41 year old male, clusterheadachepatient since 1994. The first
cycle was three months and disappeared for five years. It was treaded with ergotamine with
reasonable result. Since a couple of weeks I'm in my second cycle and it feels much worse
then the first. I'm on sumatriptan (Imigran) now, the injections. It works ok but I use to
many shots, about 6, 7 a day. According to my dr I have the heart and vascular system of a
young horse and I don't have to worry to much. Hope he's right. Also use oxygen which
stops a couple of attacks, in daytime that is.Noctural attacks are only stopped by
sumatriptan. Since three days I'm also on verapamil, but upto now there is no result.
Could take some time I understood. Overhere in Holland CH is recognised by most dr's and
threatment is mostly as described above. However, there are still some dr's who don't
prescribe oxygene since there is no scientifical proof that it works. Madness!! There are
some neurologists who really know a lot about CH, and who do all kind of operations to
prevent the attacvks from comming. I have not met anybody who actualy had such operations,
if anybody here has experience with them I shure would like to know. I am a member of the
dutch society for migraine patients, who also provide a lot of information for CH patients
but untill now I never met another CH patient. Any dutch CH patients: mail me at
rob@blue-willow.com to exchance experiences and maybe benefit from them. Again: great
site, it helps to know that I'm not alone.
Rob Heckemann <rob@blue-willow.com>
Holland
Wednesday, March 31, 1999 at 07:29:26 (EST)
I don't think I can add anything new about clusters except Imitrex is the only thing
that helps me with the pain.
tony raymondo
USA
Tuesday, March 30, 1999 at 14:17:03 (EST)
Not a whole lot to say. We both know the pain and suffering and how our lives are
affected. The only thing that keeps be sane is knowing that oxygen works for me. My
current episodes have hit me 5-6 times a day for the last 5 months. They should only last
me another month or two. I know when I die, I'm going to heaven, cause I'm in Hell now.
Gary Holdren <garyh@4dvision.net>
Denver, CO USA
Tuesday, March 30, 1999 at 09:24:03 (EST)
This is the second time I have written. The first time about 3/4 weeks ago. I still
have not read of any other sufferers being offered surgery. I was told if prednisolone
didn't work that surgery is my last resort. This involves cutting the temporal nerves in
my right temple. I have already oppted. out. It is not a 100% cure and I could be left
with paralysis on the right side of my face. Has any body undergone surgery to cure the
headaches and if so has it worked? Let me know please. I have a feeling that because i am
in U.K and CH is not well known here this is the easiest and cheapest escape route for the
G.P's
Tanya Loveday <scorpio@cancer98.freeserve.co.uk>
Norfolk, United Kingdom
Monday, March 29, 1999 at 16:06:09 (EST)
This is the second time I have written. The first time about 3/4 weeks ago. I still
have not read of any other sufferers being offered surgery. I was told if prednisolone
didn't work that surgery is my last resort. This involves cutting the temporal nerves in
my right temple. I have already oppted. out. It is not a 100% cure and I could be left
with paralysis on the right side of my face. Has any body undergone surgery to cure the
headaches and if so has it worked? Let me know please. I have a feeling that because i am
in U.K and CH is not well known here this is the easiest and cheapest escape route for the
G.P's
Tanya Loveday <scorpio@cancer98.freeserve.co.uk>
Norfolk, United Kingdom
Monday, March 29, 1999 at 16:05:20 (EST)
I am goning on 19 years with this nightmare. Iam in the latest episode going on
three weeks now. It seems to be subsiding with soreness and a dull ache.
Michael C. Moan <mmoan@planning.state.ri.us>
Providence, RI USA
Monday, March 29, 1999 at 11:47:46 (EST)
I have had a cluster headache variant hor about 30 years. I am 70, retired from a
professional career in 1998. My headaches are atypical: 1. They are not as painful as most
sufferers report. On a 1 to 10 scale the maximum pain is 6, average 5. Only rarely are
they disabling. 2. They can last as long as three days with no respite. 3. I do not fit
the common male clusterer's profile. 4. In the past my "cycles" lasted only a
few months with long periods (max. 7 years) of remission. However I have been in a
continuous cycle since August, 1994 (almost 5 years) Hardly a day goes by without some
headache activity. 5. LIHIUM CARBONATE seems to have moderated severoty but does not
prevent attachs. I take 300mg three times a day. Side effects can be quite disturbing:
tremors, unsteadiness and impaired equilibrium. Also, I beloeve that the lithium has
triggered the onset of psoriasis, so far very mild but with an uncertain prognosis. At
times I experimemt with decreasing the lithium dose and then eliminating it entirely, but
headache frequency and severity increase in a classic cause-and-effect mechanism. Most
successful analgesic has been LODINE,
Chris <Eltigte@aol.com>
Boca Raton, FL USA
Monday, March 29, 1999 at 06:25:31 (EST)
I am very happy to learn of this site. It has been a great help to me in dealing
with these CH's. Thanks.
Bill Smith <carolsmith@webtv.net>
Egg Harbor Twp., NJ USA
Monday, March 29, 1999 at 00:53:58 (EST)
great site
Wm. Early <wearly@mindspring.com>
Woodstock, GA USA
Sunday, March 28, 1999 at 21:16:22 (EST)
I turned to the internet in desperation tonight after witnessing my husband's
suffering with CH. I just gave him a shot of imitrex which stopped it for now. he has had
CH for the past 15 years. They have been fairly constant for the past 5 years. Cycles
often last for months with several severe HA occurring during the night, and usually
milder ones during the day. I am frustrated because he smokes and drinks pots of coffee
daily - the coffee in response to the HA. He also has a very stressful job, no outlets for
stress. I worry about him taking too much imitrex, if he has too many epsodes in one day.
I printed out this message board to offer him some support. I fear that he is depressed
and discouraged. I would like to hear more about Verapimil from folks who have tried it.
Prayers for pain free days and nights.
Lisa Potash <lpotash@msn.com>
Melbourne, FL USA
Sunday, March 28, 1999 at 03:24:10 (EST)
Hi everyone I'm 38 and have had these ch for over 17 yrs. I'm one of a few that
inherited them from my father. It is nice to know that I'm not alone with these CH. Don't
these CH suck I would'nt wish them on anyone. Mine are on a every other year cycle and
this is the year. Mine started Sunday night and have had 4 since then. I was looking for
new info on them and found this GREAT website thanks DJ.Thanks to all who post info on
here it really does help, missory does love company. Hopefully mine will end soon but I
know from past episodes to expect them for another few weeks. Everyone just grit our teeth
and hang in there hopeflly the answer will come someday. Have a good day. Rick McCarthy
Rick McCarthy
Atl., GA USA
Saturday, March 27, 1999 at 21:23:56 (EST)
What a great site!!! I am 59 and have lived with the beast since I can remember.
Actually, thre are 2 beasts, 0ne above my left eye and the other above the right. The one
on the right has been visiting now for the last 3 weeks and it's CHs are always 10s (the
currently dormant left guy is mostly an 8). It awakens each night between midnight and 1
and slowly gnaws its way (with dull, tearing teeth) around my eye until it reaches my
upper jaw. The journey takes from 45 minutes to an hour. If I am lucky, there is only one
visit but usually there are 3 to 6. O2 is effetive only if taken in the 1st 10 minutes and
I'm usually asleep trying to fight it off then. So its pace the floor, curse the darkness,
kick the cat (poor cat) and contemplate suicide. But there's always tomorrow and maybe the
episode will be over for a few months or even years. I too have gone through the med tests
with clueless Drs. some of which made things worse. I have found that when in an episode,
diet is extreemly improtant. I avoid like poison anything with Mono Sodium Glutamate. Also
things like hot dogs (preservatives),parmesan cheese (naturally occuring MSG), perfumes
and solvents (especially oil based paints). I'll be retiring the end of June and hopefully
the life style change will bring some improvement. Maybe not. Painless nights to all..
Bob Kipple <kipplebob@worldnet.att.net>
Jupiter, FL USA
Saturday, March 27, 1999 at 16:48:59 (EST)
I've had CH since I was eighteen, and I'm now fifty-one, so that's thirty three
years of CH. I don't even want to think about how many headaches that comes out to. I've
been through most of the medical treatments, and a few non-medical ones. The best things
i've found have been oxygen to abort an individual attack, and verapamil (240-480 mg/day)
as a prophylactic. Verapamil kept my clusters at bay for three years after they threatened
to return, but finally, after five years, a new cluster started in spite of the verapamil.
I used to call it my "elephant charm" from the joke about the guy who wore a
charm around his neck to keep away elephants. When a friend pointed out that there are no
elephants in North America, he said, "There, you see, That just shows how well it
works!"
Stuart Flashman <stuflash@aol.com>
Oakland, CA USA
Saturday, March 27, 1999 at 02:48:48 (EST)
Just today my doctor put the name "cluster headache" to what I have been
experiencing on and off for 10 years. I have bought reading glasses, had teeth pulled, and
still the only relief I found were the periods of remission that have lasted for years. My
headached just started back up after nearly 3 years. My doctor can not tell me why they
happen, how to prevent them, or how to lesten the painful episodes when the come in the
middle of the night. The best thing that I have found is a dark room and deep breathing.
They usually last only about 10 minutes or so, but can go as long as 1 hour. I pick up
some medications tonight on my way home from work that should help. Wish me luck!
Dion Carlo Tretta <dtretta@earthlink.net>
Los Angeles, CA USA
Thursday, March 25, 1999 at 20:00:13 (EST)
I am 43yrs old started CH 23yrs ago they come and they go but dont go often enough
mostly spring fall. Went through it all MRI cs on and on its CH. Its hard for people to
under stand if they never had one.But Imitrex works for me only when it gets out of hand
and it just will not let up.When I start anew cycle I take propranolol seems to shorten
the length to anywhere from 15min to 45min not bad.Only they come back about every 1to2hrs
then I take another till its time to go to work so I get about 3hrs a night sleep and its
not good sleep either.Sometimes I will get them through the day and like all of you I have
to find a place to have it.I am currently going through a battle of them now going on 3rd
week.Its hard on you and every one around you this is a great place to find knowing you
are not alone execpt when you have an attack then we are all alone. I have had alot of
practice with these so if anybody would like to e-mail me I would be more than happy to
talk with you.
RICK YOUNG <RINC133844@AOL.COM>
MENTOR , OH USA
Thursday, March 25, 1999 at 16:23:14 (EST)
I am a 60 year old female and began having clusters in 1968 when I was 27. When I
had one, I would have one every day for three months, beginning with headaches lasting
30-45 minutes and increasing, as the weeks went by, to 4-6 hours every day. Then, as
suddenly as they started, they would end and I might go 7 years before another seige would
begin. My headaches are now under complete control. About 15 years ago, after weeks of
trial and error, a doctor prescribed inderal (60M per day) and bellergal (bellaspas tab)
twice daily. When I have my first headache of a seige, I contact my doctor and start the
medication asap. Ususally takes 5-6 days to control the clusters, but during that time,
they do become less painful. I take the medication for three months, then gradually work
off it (under my doctors care). I, of course, consider this combination of medications a
Godsend. I hope this helps at least some sufferers.
Barbara Herr <wayne.herr@gte.net>
Amarillo, TX USA
Thursday, March 25, 1999 at 15:30:00 (EST)
I believe that my husband is suffering from cluster headaches and have found the
information on this site invaluable. Please forward any additional infor you can to me to
help me in getting him diagnosed and properly treated. Thanks so much for the support! Or
if anyone is interested in being e-mail buddies, I would love to chat!
Cathy Stevens <cathystevens@visitus.net>
Wayne, MI USA
Thursday, March 25, 1999 at 09:59:15 (EST)
I have been suffering with clusters since 1985 with a 3 year remission. They started
again in 1999 on the opposite side. My latest attack lasted 1 hour. They usually accure
around 1:00a - 2:00am., almost every night. I have tried Prozac to break the cycle but it
didn't work. I have not tried any other treatments.
Mark Walker <o3husband@aol.com>
Highlands Ranch, CO USA
Wednesday, March 24, 1999 at 23:27:39 (EST)
I'm 54 and my episodic headaches started when I was 30. For the first 10 years or so
onset, duration, frequency, location and intensity were diabolically predictable. Always
on the right side, 90 minute attacks every other day for exactly six weeks, every 18
months. After that, though, the pattern became less predictable, duration between episodes
decreased to every 8/9 months, attacks shifted from right to left sometimes during the
same series which lasted up to 90 days. Attacks ranged from 45 minutes up to 4 or 5 hours.
Four years ago, I quit smoking and the headaches went into remission. I had my first
attack since then two weeks ago. I've been told to expect them to fade away after age 50
and I really thought I had seen the last of them until this month. What a letdown. Finding
this site is a bit of a revelation; it's very comforting to find I'm not alone in this
affliction.
Mike Evans <mevans@cwo.com>
Fair Oaks, CA USA
Wednesday, March 24, 1999 at 00:45:41 (EST)
I started getting horrible headaches at age 19 (am now 47) for periods varying
between three weeks and a horrible seven months. Typically I would get one a day, but
sometimens as many as four oir five, mainly at night, waking up with the sensation
somebody was wrenching my right eye off with a teaspoon. I visaited a variety of doctors,
form an ophtalmologist who surprised me with the theory that my eyelashes grew inwards-he
porpoceeded to plucvk them out with tweezers-to an ENT doctor who perfomed a nasal
punction on me, ,to digestive tract specialists to neurologists. Most of the just shrugged
their shpoulders and informed me that I just had headaches, and I would have them all my
life. In Costa Rica, at age 43 I visited an acupuncturist who succeeded in getting rid of
the pain for three years!. He put me on the following diet: no alcohol, nothing raw or
cold and had to sumberge both hands in hot water for twenty minutes twice a day. This
treatment, combined with acupuncture effectively got rid of my excruciating headaches-I
have contemnplated suicide twice-for the longest period of time, and when the pain came
back it was milder and the attacks somewhat shorter. Lately hot water showers and washing
my face with very hot water work very fast and very well. I have never been diagnosed with
cluster, but the symptoms coincide and the occurrence and locatiion of the pain are
typical.
federico palomera <fedetrol@worldnet.att.net>
New York City, NY USA
Tuesday, March 23, 1999 at 20:57:36 (EST)
Hello. I've had cluster headaches for about two years. I have appreciated the
information on the website. It is somehow reassuring knowing that I am not alone and that
I am not imagining my pain and related symptoms.
Irka
Ont Canada
Tuesday, March 23, 1999 at 15:32:27 (EST)
Hi fellow sufferers I have had clusters for 26 years started when I was 18 taken a
lot of different drugs most of them worked for a while currently I'm using verapmil and
depakote still have 3-5 every night but not as severe. Oxygen is the best thing I have
found for immediate relief. Does anyone know if they lesson any when you get older and are
not as strong to fight them ? Does anyone know if the have any relationship with any other
medical problem like stroke ?
Charles Andrews <candrews@fullnet.net>
cushing, ok USA
Tuesday, March 23, 1999 at 15:05:52 (EST)
Anyone in england who suffers from CH please mail
Steven Benton <hoonatic@hotmail.com>
Banbury, Oxfordshire England
Tuesday, March 23, 1999 at 13:59:49 (EST)
I remember these headaches at 5 or less. Typically I would have one or two clusters
per year. I've skipped years also. It was 5 or 6 before the last episode in Oct-Nov.
Inhaled some prescription stuff on a already started Headache and thought I would die. No
headaches since Nov. Thanks for the page. See Pi the movie for another perspective.
Joel Folds <jkfoldsy@aol.com>
Wichita, Ks USA
Tuesday, March 23, 1999 at 00:12:56 (EST)
I have been getting these headaches off and on for about 17 years. It is a nice sort
of relief to see my symptoms in print. Now just to find the cure I need would be
appreciated. Thank you for this site, it has been long needed by us who have suffered and
still do. I have gotten cluster headaches all over the country at all times of the day and
night, lately about twice a day and around 12 hours apart. I have taken all sorts of
medications for relief only to find they either go away or the medications stop working
till I try another that will work. What seems to help me is drinking seven up, sprite or
any softdrink to settle my stomach or otherwise I become nauseous very quickly. I am
presently taking amytriptiline, atenolol (for high blood pressure) and always ergotamine
tartrate and caffeine (cafergot) for any kind of early prevention or relief. I just do not
want to be on medication all the rest of my life. I am 47 now and hope and pray every day
and year that this will be the last of them. Again, thank you for this site. It is greatly
appreciated, Joe
joe slobodzien <pepperj@pacbell.net>
concord, ca USA
Monday, March 22, 1999 at 19:58:29 (EST)
Need support. 6th day in this attack. Sure could use some company who understands...
Randy <HD_BOWTIE@yahoo.com>
Columbus, MS USA
Monday, March 22, 1999 at 18:43:18 (EST)
i have had these for several years. The only thing I know that works is immitrex and
oxygen 4 leters a minute. Pain pills seem to make them come back more and more.
phillip l lindle <plindle@ hotmail;com>
alpena, mi USA
Monday, March 22, 1999 at 17:43:27 (EST)
I have been suffering from clusters since I was 15 years of age and spent lots of
time and money on Doctors Dentist ; fortunaly I found relief after I conducted my own
research and obtained a referral to a Neurologist. I take elavil, verapmil ( Calan ).
Oxygen inhalation seems to work when the do occur. I would go to the ER when the pain
became excrutiating but by the time the Er Doc got to me, the headache had subsided ( thus
a futile effort). With the el ninio phenomena, I know of others who have had an increase
of clusters. A book by M Rapaport describes the pain as being greater than complicated
child birth and accidental amputation etc. I would strongly reccomend the use of medical
oxygen. Incase you run out of oxygen, a strong cup of coffee can help but can also trigger
clusters. So it is bes to cut back on coffee consumption in order to use it in emergencies
situations. I also have read that 70 to 80 percent of sufferers smoke cigarettes. I have a
question do any of you have addiction problems or Alcoholism. My involvement in AA has led
to the conclusion that addiction prone individuals have a higher occurance of clusters and
migrains as well There is hope. Finding the right help can be difficult since mos of my
docs in the past thought it was sinus related due to the dripping nose and tearing eyes
similiar to allergy problems. I have encountered people who were unaware that they had
cluster headache syndrom. By my own experience, I have been able to point people in the
right direction to get help; thus, my experience has been a blessing as well as a curse.
Good luck to all you sufferers David Chalfant. Athens GA.
David Chalfant <dchal@negia.net>
Athens, GA USA
Monday, March 22, 1999 at 17:41:58 (EST)
Finally I have found some info on this. I have been searching around to find
ANYTHING on cluster headaches.
DARLENE CLEROUX
OTTAWA, ONT, USA
Monday, March 22, 1999 at 14:45:10 (EST)
Had my second Cluster Headache. These are extremely painful...
John Parsons <johnpar@microsoft.com>
Toronto, ON Canada
Monday, March 22, 1999 at 13:52:22 (EST)
Ouch...this is all new to me. I've recently been diagnosed with CH. Been through all
the tests...blood work, EEG, MRI all to tell me there isn't much they can do for me. I've
had 3-4 Headaches every day since the First of the Year...happy new year to me. (that's
when i started to keep track of them) i just had an oxygen tank delivered...it helped a
little, but it just seemed to postpone the headache. i would love to hear from anyone who
would like to give me some insight...or just someone who understands that it feels like
some one is hitting your head with a hammer until the skull starts cave in. thanks.
Kim Leach <kimbo1234@yahoo.com>
Warwick, RI USA
Monday, March 22, 1999 at 12:50:43 (EST)
In 14 years of CH's, I've only ever met one person who also had/has them. That was
about 14 years ago. ;-) I've printed off some of the info found here to give to my
"never had a headache in my life" boss. Perhaps he'll understand why I look like
a bag of hammers when I come in in the morning. Excellent resource site. Thanks Brian
Brian Lintner <blintner@telusplanet.net>
Mecidine Hat, AB Canada
Sunday, March 21, 1999 at 22:01:58 (EST)
Been there ,seen that !!!!! Send Me A Note !! GOOD LUCK!
F DeForge <F DeForge @aol.com>
Barre, VT USA
Sunday, March 21, 1999 at 21:28:28 (EST)
My wife and I have a 7 year old son who was diagnosed with CH two years ago. He does
not get them all the time, yet when he does it is awful as parents to watch and know what
kind of pain he is dealing with. We will check back here now that we have found it (this
website) looking for ways other parents have coped with their own children who've gone
through this problem. If you have any good info for parents relatively new to this
problem, it would be most graciously appreciated. Thanks.
Rodney Ray <rodneyray@hotmail.com>
River Falls, WI USA
Sunday, March 21, 1999 at 20:29:45 (EST)
This is beyond a doubt what we who suffer with CH have needed for years. It is so
heartwarming to know that I am not alone. I've read through the other postings and feel
that I can identify/have written/or relate to most if not all. I began suffering with CH
in 1979 at age 19. I was diagnosed at age 23. The CH cycles have diminished in their
frequency (but not the severity) some over the years. But I never count them gone. I wish
this site had existed back then. I've been down all of the dead-ends everyone else has.
I've no magic cures to relate. Just want to say thank you DJ for this site. Courage people
and don't let CH win!
Marc Jones <lvmarc7816@aol.com>
Las Vegas, NV USA
Sunday, March 21, 1999 at 19:13:27 (EST)
Ive hated these lousy mind expanding headaches for the past 8 long years. I've been
under the wing of a excellant NEURO' Dr. Richen Portland, ME. Current meds are 1800 mg
Lithium, 720 mg verapermil Imitrex Sticks, usually twice daily. Also have been under the
knife and had a Nerve De-Compression. Ive had my fill with conventional 'try these meds'.
I often travel to U-MASS Medical Ctr for "whats new"therapy! Ritilan will be new
on menu in the next few days I can only hope and pray.The Razonomy has been offered but
just too radical for me.I really hope the Ritilan is in my corner.All we really have is
hope. My prayers are with all. GOD BLESS
Jim Sepanek
Lewiston, ME USA
Sunday, March 21, 1999 at 15:50:48 (EST)
I have been suffering from CH since i was 14yrs old.Ididnt know thats what they were
until about 9yrs ago ,when my wife was at the ER with one of our kids and was talking to
another woman who suffered from migranes.She told my wife about a specialist that she had
been going to.My wife came home and told me about her talk at the hospital,it sounded
pretty good so Iclled my DR the next day and got a referal to go to the specialist.So to
make a long story short I went and sure enough thats what they were.She put me on a couple
diff. meds 1 for the pain and 1for the control of the headaches.Ihave been taking
verapamil for 9yrs now and it does help.Knock on wood Ihavent had a CH in a little over a
year but Ican still feel there presence,and know I have a new pain med,its called
sumatriptipan shots .Ihope Inever have to use it but Iknow thats asking for miracles.So I
just want to say to all you folks who suffer and your familys also (because it takes alot
out of everyone)hang in there and maybe some day they will make a cure for us.THANX AND
GOOD LUCK.
bill fuller <sufus@tiac .net>
templeton, ma USA
Sunday, March 21, 1999 at 15:47:49 (EST)
Hi folks.. I have suffering from CH for the last 4 years. I am really glad that I
found this site. My thanks to the founder of this site, and all the contributors. It helps
to know that one is not alone ... The current bout is now in its 7th. week. The only thing
which helps is Oxygen and Sumatriptan ( Imitrex) Nasal sprays. The Imitrex tablet has no
effect on the real severe attacks. Reading about the suffering on this message board makes
me realise that there are others who suffer much more than me, and my heart goes out to
all of you. Hang in there...... Has any one tried any alternate therapies ?? If so, please
do let me know, as I am now seriously considering this.
Sanjay Dhote <srdhote@vsnl.com>
Bombay, MA INDIA
Sunday, March 21, 1999 at 11:47:12 (EST)
I AM SUUFERING FROM HEADACE FOR LAST 18 YEARS . PLEASE HELP ME. I WILL PAY YOU ALL
YOUR FEE THANKS TRILOCHAN SINGH
TRILOCHAN SINGH <trilo@DEL3.VSNL.NET.IN.>
DELHI, INDIA
Sunday, March 21, 1999 at 09:43:26 (EST)
This is my second trip to this message board. I happened to find it last year the
same week DJ started it. It has been a blessing. I am sorry to say that I am back again.
Spring has sprung! You are all in my prayers. Thanks for the site DJ.
Julie <jewl6@osage.net>
IA USA
Saturday, March 20, 1999 at 21:51:05 (EST)
i am glad to find this page.it has helped more than i can say i to have cch and
thought i was the only one.i have tried every med and the only thing to help is imitrex
inj.and reading this page.i have even had gamma knife surgery!i would love to hear from
anyone who i can help or can maybe help me.i wish everyone pain free days to come.please
feel free to e-mail. again thanks for being here. RANDY
Randy Brown <RBBM@msn.com>
HUMBOLDT, TN, USA
Saturday, March 20, 1999 at 06:35:05 (EST)
My only wish is that doctors could spend one day with the pain that CH'er suffer. I
am a wife of a chronic CH sufferer and see the intense pain he goes through. This is such
an incredible condition and it is amazing that doctors and the public are oblivilous to
the pain that one endures with this condition...and all I can do is watch him go through
this daily. If there are any wives/husbands out there who feels as hopeless as I do,
please mail me. Maybe we can help each other. thanks for this page. When I start feeling
really depressed, I come here and see that we are not alone, and it has truely help me
through sleepless nights
Lisa <tclayjr@aol.com>
Louisville, KY USA
Saturday, March 20, 1999 at 05:13:25 (EST)
Hello to whoever may read this. I have only just discovered this board after trying
to get some info on clusters. Thought I'd say hi and tell you that there happening here in
Australia too. I am not a sufferer, thank God, but I have just witnessed my brother have
another attack. How do you all handle it? I hope a cure comes quickly if possible for you
all. Until then, "hang in there". Regards Lyn.
Lynette <shah@tig.com.au>
Sydney, Australia
Saturday, March 20, 1999 at 02:19:43 (EST)
Hello all. I'm writing to you from the hospital where I'm receiving histamine
treatment. This is my third time receiving this treatment in the last 5 1/2 years. I am a
chronic sufferer, being blessed with these baby's at least once a day every day for the
past 16 years. My cycle is the attacks increase to 5-10 a day. I must tell you, you people
are ALL a true inspiration. I run one of the most active headache support groups in the
country (NHF). I receive calls from all types of headaches sufferers (approx. 25-50 yr.)
in the country and what I don't tell them is that they have no idea!! Since most of the
calls that I receive are from tension or migraine suffers (don't get me wrong, their
condition is also debilitating) these people are not to familiar with the type of pain we
go through. Playing with your kids, going out with your spouse, or just going to work
every day, becomes so much more meaningfull. Am I going to get another attack when I'm in
the park playing with my kids? Can I have a quiet romantic evening with my wife? How about
sitting in a football game with no oxygen and 60,000 screaming fans(I live outside of
philly maybe just 30,000 talking fans.) This is why I admire all of you. Because, through
all the pain and fear we all go through, WE MANAGE. Just by talking or writing about it is
a start in the right direction. Feel free to e-mail me if you need to vent. Feel Good,
Andy
Andy Cohen <AJJJCO@AOL.COM>
Voorhees, NJ USA
Friday, March 19, 1999 at 22:45:58 (EST)
Thank you DJ for all your hard work!!!! I am beginning my second bout of CH. Had
first bout of 5-6 attacks in late summer '96. I hope it is just the type of wine my wife
cooked with (I did not drink it this time). It is too coincidental to '96 when we brought
back at wine from France. I had not had that particular wine since '96 and the beginning
of the attacks until this week. I am a pharmacist and work for a research based drug
company and would be happy to research and pass on any knowledge for this problem. It is
awful as you all know, but the Imitrex is working to take the 'edge' of off the pain. I
still have the 'feeling' however and hope it goes away soon!!!
Steve Peters <StevenCPeters@worldnet.att.net>
South Bend, IN USA
Friday, March 19, 1999 at 19:58:17 (EST)
I think the CH beast has discovered me, but it took this site to make me realize
this is my first bout. I find that even samll amounts of alcohol trigger them and they
onlyseem to happen at night. I have had a headache every early AM for the last 14 days. My
Dr. scibed some Nasacort (steroids) and I was OK for two consecurtive nights. I read that
9 mg. of melatonin can work as a preventative. I have been taking 1000 mg of ibuprofen
which helps me get off to sleep once they kick in. I hope these headaches go into the
"off" cycle soon!
Cliff <cageloff@shore.net>
Essex, MA USA
Friday, March 19, 1999 at 14:14:48 (EST)
At age 56 I just found out that the "runny-nose" attacks I've been having
for many years are really Cluster Headaches. Previously thinking that they were caused by
taking a shower before bedtime was causing the sinus to fill and cause the pain, I gave up
and started taking showers in the AM. But the attacks continued, periodically. The last
series started as usual, at night, waking me up. Then a couple of attacks mid-day,
followed by the night time attacks. Finally saw my GP -- he immediately recognized the
symptoms (Lucky me, right!!) and put me on high-dose prednisone. Attacks stopped
immediately, but the side affects of prednisone are worrisome (upset stomach, etc). Also,
I've had several rebound headaches from the Excedrin Migraine tabs. The GP has also
mentioned oxygen (full face mask, 8-10 liters/min for 10 min). Does this really work?
bruzer
George Bruzenak <bruzer@rmi.net>
Monument, CO USA
Friday, March 19, 1999 at 14:14:32 (EST)
Hi, I am 38 years old, with a wife and three great kids. I have not been to any
doctor for these FKG headaches. I am hopeful that someone will e-mail me and share a
simalar exp. I get headaches in groups. the groupd last from 3 days to thee weeks. The
headaches themselves are 10 minutes to 45 minutes, They are unwarned stabing pain,
blinding me and bluring my vision in one droopy eye. I get fairly dizzy or weghtless
feeling while they strike and strike, tease me for a few moments by lurking behind my eye
and then strike again. Some will tear my head almost completely open instantly it seems,
yet some last only a few minutes then a break of 10-20 minutes then hit again. I will go
through this for a week or two maybe three. Then they will go away for weeks or months.
One time a full year. Right after a headache I am washed out and slurred speach, dizzy
etc. takes a few minutes to get up and running. Some of these attacks I can continue life
durring them. Some of these attacks kill me and I wait for the ressurection. No one has
ever told me anything thjat would help. Mostgly I get weird resonses from people. Doctors,
so far, say "Take motrin 800 mgs and 100mgs tylenol every 6 hours. Never helps. What
are these headaches? someone please e-mail me and tell me if they understand this. I have
read some of the baords and I do not self abuse or anything, I just hold my breath or hide
until it's over. I couple imes I was driving, and had to stop. The hardest part is hiding
it from my kids. I get manic right before and after a bunch of attacks I get very
depressed. Thanks for listening.
Rob Krabbe <rob@krabbe.com>
USA
Friday, March 19, 1999 at 02:26:09 (EST)
I am separted from my husband and we are friends and live in the same mobile home
park. His headaches stared 3 years ago and they are like clock work, same time the first
two years, one a day, now he is on disability and has been on every medication possible.
We have a great doctor, but he is talking wanting to die. I have seen him in the pain, I
know what's it's like, I don't get headaches but when you see someone in that much pain,
you can't even describe it to someone. He has passed out, gone to ER been given big
narcotics, is on the oxygen (that helps somewhat if he feels one coming on), he is drained
and we would like to know if anyone, anyone has found something that helps take away this
pain. It is devastating, it is worse than cancer, I see it in his face, I've been there
with him during the pain, and the sad part is he has a large tolerance to pain, but after
they kind of go away there is still the pain that he says would put most people ready to
kill themselves and again he has talked like he wants to end this. The first two years
these were once a day, same time now the third year of this cycle, they wake him up at 2
a.m. and he has 3 to 6 a day, he is totally drained and no medication, nothing is touching
this. What is one to do and if anyone out there has any suggestions or has found something
please let me know. Thanks for listenting.
suzanne <buschniner@aol.com>
Fresno, ca USA
Friday, March 19, 1999 at 01:27:46 (EST)
Thank you for this site. Nice knowing we are not alone in the battle.
Joel <joel@twol.com>
Fort Morgan, Co USA
Friday, March 19, 1999 at 00:41:16 (EST)
Hello everyone, I'm in my ninth week of my cycle and it doesn't look as though my
headaches are getting better.. So I'm going monday to see a Doctor Kudrow. He's suppose to
really know his stuff. I'll let everyone know what happens monday night. Wish me
luck.......
Tim <codi4@fea.net>
Lake Forest, CA USA
Friday, March 19, 1999 at 00:05:58 (EST)
Just read several entries. Don't ya just want to strangle the medical profession for
not stepping up the research on CHs? If I ever tell someone that I suffer with cluster
headaches, I get that look from them, as if they're thinking,
"Oh....ok...whatever." They have no clue what I go through much less what a
Cluster Headache is. I would submit to anyone willing to listen (even migraine sufferers),
that a strong CH.....I mean one that really kicks in and stays for a while, has got to be
one of THE worst encounters with pain that a human being can endure. And that is why I
come here. I know what you people are going through. Keep the info coming in. You have to
admit, there is no place that can provide you with more information on CHs than this site.
Hell. I'll guarantee you my doctor doesn't have this much CH stuff laying around in his
office! There is not a better group of people to share and exchange this information, than
with all of you incredibly brave souls!
Dennis <cudennis@aol.com>
Kalamazoo, MI USA
Thursday, March 18, 1999 at 23:52:06 (EST)
I have had the monsters for over thirty yearsevery,eighteen months to two years they
distroy my life I am curently on varapimil and it seems to keep them a bit better but
still, they break thru.
Mel Waxman <adoowopcop>
Sunrise, Fl USA
Thursday, March 18, 1999 at 17:47:21 (EST)
I have suffered for 18yrs with CH and been around the block with doctors and
medication, But has any one ever used ritalan for CH Please contact me as I would like to
know if it has hel[ped anyone.
Rich Potenza <rpotenza@aol.com>
setauket, ny USA
Thursday, March 18, 1999 at 10:00:27 (EST)
I have suffered from cluster headaches for 11 years, and been diagnosed incorrectly
a dozen times (twice this week in the emergency room). Today I saw a neurologist who also
suffered from cluster headaches. It's a shame that so many doctors do not know the
symptoms of cluster headaches. How can I help spread the word to the doctors and helpless
unknowing victims of this condition?
Tony McCullough <ynot399279@aol.com>
Longview, TX USA
Thursday, March 18, 1999 at 01:03:36 (EST)
Hi Everyone. I'm the wife of Andy who has suffered for the last 23 years with
clusters. We have been married for 10 years and I have only seen him skip a cycle twice.
He usually gets them once a year for 8 to 12 weeks. They come at least 2-3 times a day. He
takes demerol by which only covers the pain for a period of time. I am so happy and yet so
sad to see this web site. As you all know, it can make life so--------stressful. I would
love to know why more research is not being done on this. Just reading this breaks my
heart. My husband suffers so much, and I cry and pray every single time this happens. I
now will pray for all custer migraine sufferers. God Bless you.
Denean Garrity <adacgarrity@mindspring.com>
Wake Forest, NC USA
Wednesday, March 17, 1999 at 21:45:19 (EST)
I have no comments. I am just trying to add my clusterhead self to the list.
Dave Robinson <pamordave@msn.com>
Quincy, FL USA
Wednesday, March 17, 1999 at 21:23:56 (EST)
Have just printed 22 pages of text and can't wait to start reading them...Thank you
for some light at the end of the tunnel...My G.P. has been of some help however his
knowledge on the subject is limited...Thank you again Regards Vic Cottle
Vic COTTLE <odyssey@pnc.com.au>
Sydney, nsw Australia
Wednesday, March 17, 1999 at 17:35:36 (EST)
Hi everyone, I'm looking for help for my dad he's in his late 50s and has had CH for
as long as I can remember and I'm 32 so thats a long time. He has been to doctors and he
has tried some medcine but not alot. His CH was so bad last night we took him to the E.R
they gave him a shot of something he's going to his doctor today. I really did not
understand the severity of the pain untill my mom told me my dad was talking about
shooting himself. I now know something has to be done for him. he is very stubborn and
would not go to the doctor for years because they put him through all the test and did not
cure him so he has know faith in them but we have got him a doctors appointment today and
he is going if I haft to hog tie him. I really feel incouraged reading all these post and
I'll keep you all in my prayers and I'll pray for a cure. I'd be greatfull for any info
that my could help my dad. or if you any of you need a friend I can be that. Love and Best
Wishes to you all. Rena
Rena <PEG@IOCC.COM>
Prescott, AR USA
Wednesday, March 17, 1999 at 13:06:18 (EST)
Wow!! To read some of the letters is like someone has entered my head. The nights of
pain and the common feelings for spouses and loved ones that suffer as well because there
is nothing anyone can do once the pain starts.I suffer from chronic clusters for the past
3 years. They came on all of a sudden and have not let up at all. I have been on more meds
then I know what to do with and they are always changing them because nothing works. The
only relief I get is with Stadol NS and thats addicting and horrible, but its better then
the pain. Knowing first hand the desire to end it all to be rid of the pain. I know there
are others who have had or are having the same feelings I have. PLEASE!!!!!! think of
times that weren't so bad. Think of how important the people in your life are. Think of
those you love and keep as strong as you can. This is the best site I have seen and will
be back again and again. Thanks for the outlet.
Rick Burek <Rburek@planetdirect.com>
Blandford, Ma USA
Wednesday, March 17, 1999 at 12:55:53 (EST)
Hello.I'm 55 and have suffered with clusters for more than 25 years.Mine come once a
year, starting in June, July or August and last 4 to 6 weeks. They started anywhere from
6PM to 2AM and would last 2 to 6 hours. In 1997, my seige started in July. I tried
Zostrix, a little dab in each nostril. It helped, a little. In March of last year, I
started taking a Cayenne Pepper cap. each day. Guess what, it worked. That was the first
time in more than 25 years that I missed its cycle. What I'm taking now is called
CapsiCool in a 490 mg capsul. I suppose any brand will work, but I suggest taking as much
as your stomach can take. I also worked with a Chiopractor, an AK type, who did some
knocking around my right eye socket. If you have any questions about this, please E-Mail
me and I'll give you all the details. I hope this will help, it sure did for me. Prayers
to all, Roy.
Roy <roystrans@aol.com>
Westminster, Ca USA
Wednesday, March 17, 1999 at 00:24:17 (EST)
My story is too long I have suffered since I was 12. This time they have lasted 12
weeks. I have excellent neurologists in SA but would like to find a doc in USA or Uk or
wherever to seek additional help.
Theresa Aaronson <theresa@jhb.lia.net>
Johannesburg, South Africa
Tuesday, March 16, 1999 at 20:35:01 (EST)
My friend who has CH, is coming off prednisone and is having very painful muscle
problems in arms and legs. And on top of that is having CH again. Has anyone pad similar
experience with prednisone?
Linda K. <chevz99@aol.com>
USA
Tuesday, March 16, 1999 at 20:23:40 (EST)
Very informative site. I thought I'd read it all. Began current series of headaches
the 2nd week of February "99". They've been light compared to previous years
until this week. Back to being an Imitrex junkie. You gotta love the pain. 3/16/99
Jeffrey A. Creager <Jc2194@aol.com>
Englewood, Ohio USA
Tuesday, March 16, 1999 at 18:44:49 (EST)
I just returned from a neurologist who believes I too am suffering from cluster
headaches. I was skeptical until read through this site. This must be what I have. I
always felt I had a high tolerance for pain, but this is far beyond what I can deal with.
I just took my first Sansert and don't know what to expect. It's sad to see so many people
here as I wouldn't wish this on my worst enemy. I'm in my third year of this with episodes
coming in about 2 month bouts. I've been going through this for a month and half now this
time and finally got a diagnosis. I have questions and will put them up on the message
board. Any help anyone may have would deeply...deeply be appreciated. God Bless all of
you, Dave
Dave <SOCNORBOG@aol.com>
Denver, CO USA
Tuesday, March 16, 1999 at 17:12:43 (EST)
I'm a 39yo male who has been suffering from Cluster HA's since 84. like so many
others, I have hazel eyes with brown specs. There must be some connection there. My
attacks occurr every 2-3 years and generally begin in either oct or march. I get 3-4 HA's
a day at generally the same time and they generally last 1/2 hour. They remain for 3 weeks
to 3 months. The only medication that works to break the cycle is prednisone. The only
medication that abates an attack in progress within a few minutes is Imetrix. When I am in
a cluster cycle, I have to be verey careful about my diet. Many foods and drinks can
trigger an attack. I am interested in hearing from other sufferers who have had success
with prednisone, whose diet also effects their HA's or who just want to talk about this
curse. If anyone knows of a good, caring, understanding neuro or specialist in the L.A.
area I would be thankful for the referral. May one day we all be purged of these wicked
HA's!
Mark Kaufman <mdk3@earthlink.net>
Los Angeles, Ca USA
Tuesday, March 16, 1999 at 15:59:06 (EST)
Yes, A tear or two comes to my eyes to, When I read these comments! I'm chronic CH,
9 years now, & I haven't had a remission yet - The longest I've gone without one is
about 1 month! I still need to remind my wife to please , take her razor out of the
shower... I'm afraid access would be possibly suicidal. I am Blue eyed, Diagnosed as
A-Typical Chronic Cluster Headaches, I usually have 2-3 each day, sometimes 3-5 each day,
and they last anywhere from 30 minutes, to two hours or more. They are most severe in the
evening, or in the middle of the night, & sometmes even wake up with another one. If I
don't feel it coming on soon enough (The "Magic Moment"), to take a pill, it's
too late! Waking up in the middle of the night is the worst...It is too late for Fioricet
(aka Butalbital or Esgic-Plus) to work, & I am reduced to Imitrex injections or the
E.R. I've had some relief in the severity of them, while on 600MG Lithium Carbonate per
day. I recently had Oral Surgery, & this seems to have really intensified the severity
of my headaches. I am amazed at the number of people that have become members of the
"Shower Club"! I thought I was the only person who did this! The shower is a
good tool, providing you don't have a glass door like I do! I use it to concentrate to try
to attempt to move the pain from behind my right eye & temple to anywhere else I can
put it. For example, I turn the water to scalding & aim for my left foot. If I can
feel the pain in my foot, then I've managed to move the pain from behind my eye, for a
mere milisecond! Yes, even this tiny moment is a slice of heaven! (Be cautioned! Change
the area you are scalding frequently, or you will become blistered!) During the most
severe ones, I bang the pain free side of my head on the wall, or hit myself with the hand
held shower nozzle, (I call this the "senseless Factor - You beat yourself to nearly
unconscious so you have no "sense" of pain!) attempting to at least move the
pain to the opposite side of my head! (Rivals Demeral that just knocks you out, only
methods are different & alot cheaper, too! Sometimes, nothing at all will help, and I
curl up in fetal position in the bottom of the shower after the hot water has run out.
Life remains! Some days are better than others - I sometimes wonder if I am losing my
marbles! - Each CH takes a little more out of me...I'm wondering how many more I can take
without a break! I am praying for remission! I'm beginning to wonder if there really is
such a thing! It's gotten to where I am afraid to go to sleep at night. May you all be
protected from these demons, by ten thousand little Indians with repeating rifles! A CH
free day would be nothing short of a miracle for me! This page is incredible! I am amazed
at how many people suffer, & it is like reading about myself to see it! May you all
find CH free days & more! Let's pray they find what's causing them soon!
Buddy Walker <buddy4u@netscape.net>
Vista, Ca USA
Saturday, March 13, 1999 at 05:17:55 (EST)
Im a man 39 year old i have clusters headache since i was 10 year i have cluster 2-3
monts every 6 monts and now i have one period i take imigran 4 injektion every day i even
tried zomig tablets but is not good for me, imigran helps me in 15 minutes, If you got
some new information of cluster send it to me. i even been operated of takykardi in my
heart i eat atenolol every day for it.
Christer <l.berggren@telia.com>
NORTH, SWEDEN
Saturday, March 13, 1999 at 04:24:59 (EST)
I've been a CH suffer for 10 years now and was accurately diagnosed last year when I
had an attack in my doctor's office. My nuero put me on Verapamil and Imitrex. The Imitrex
is losing it's effectiveness and I'm still questioning if the Verapamil even works. I feel
that I am taming the beast but not beating it. The CH's have had one positve outcome in my
life...I can withstand any amount of pain life dishes out to me. My thoughts and prayers
go out to all of you who suffer. Thank you clusterheadaches.com for being here.
Mark G. <amo67@yahoo.com>
Dallas, TX USA
Saturday, March 13, 1999 at 01:21:43 (EST)
I've had clusters since 1988. To date, I've not known another "real
person" who experienced them. It's a comfort to me to know there are others. Though I
am not currently in a cycle, it has been 15 1/2 months, and I'm starting to have
"ghost clusters" off and on. Love this page! Thank You!
Margaret M.Godfrey <rgmmg@cyberlodge.com>
Harper, KS USA
Friday, March 12, 1999 at 20:51:28 (EST)
I am pleased to see that I am not alone in my suffering. I look forward to browsing
your site and appreciate the thought that I have some place to go to where people
understand. Thank you
Ryan Brown <rbrown@yahoo-inc.com>
San Jose, CA USA
Friday, March 12, 1999 at 17:40:56 (EST)
I am pleased to see that I am not alone in my suffering. I look forward to browsing
your site and appreciate the thought that I have some place to go to where people
understand. Thank you
Ryan Brown <rbrown@yahoo-inc.com>
San Jose, CA USA
Friday, March 12, 1999 at 17:40:49 (EST)
Hello Pauline (message below this one), If you need the address to Paul's site, it
is http://www.sleeptalk.com/paul/cluster.htm. Please do not post your spam here again. It
is not the place for it. Thank you! The Webmaster
DJ <dj@clusterheadaches.com>
Wichita, KS USA
Friday, March 12, 1999 at 13:44:13 (EST)
DEAR PAUL BORNEO, SORRY FOR THE MIX-UP FOR THE INVITATION FOR THE WRONG PERSON - THE
FOLLOWING INVITATION IS FOR YOU - - - - Mr. Paul Borneo, Paul Borneo's Home Page.....
Pauline Yoong Lin Ying <qi-syn@tm.net.my>
Petaling Jaya, Selangor Malaysia
Friday, March 12, 1999 at 02:36:33 (EST)
Hello, Thank you all for sharing your situations. I am a pharmacy student, working
on a presentation on cluster headaches as well as other types of H/A. I had no idea of the
intense pain suffered. I still don't "know" but you have put it in perspective
for me. Wonder Site, Very informative.
Jen <vonbart@bellsouth.net>
USA
Thursday, March 11, 1999 at 22:23:22 (EST)
Hello, Thank you all for sharing your situations. I am a pharmacy student, working
on a presentation on cluster headaches as well as other types of H/A. I had no idea of the
intense pain suffered. I still don't "know" but you have put it in perspective
for me. Wonder Site, Very informative.
Jen <vonbart@bellsouth.net>
USA
Thursday, March 11, 1999 at 22:23:08 (EST)
Hello all! Reading all the posts, I know I have found home. I could swear I had
written them all, so close to the bone they go. I am 37, and have suffered since 1980. I
have gone chronic, and come back to episodal once again. Thank God for small favors.
EEG's, cat scans, MRI's, teeth removed, and was blessed in 1986 to meet Lee Kudrow, who
diagnosed me in 10 minutes. Currently, my face is breaking out, my temper increasing,
shadow headaches daily, my time is here yet again. But now, I have somewhere to go.
Suddenly, though the fear is constant, I feel better. I have found you all! Another gift,
in the face of evil. I look forward to all the insight I am sure to get here. Hang in!
Paul I think this is going to be the best find since Kudrow & O2.
Paul <Paul@5150.com>
Lake Zurich, Il USA
Thursday, March 11, 1999 at 20:36:08 (EST)
Hi. Really happy to find somewhere to read how others are struggling with the same
affliction as me! I've had CH since 18 (about 20 years now) and have had it diagnosed as
migraine, tension headache - you name it. I'm off to my doc tomorrow for more Imitrex
(Imigran) to numb the pain during the day, which is when I get my bouts. May your days
(& nights) be pain-free.
Shaun <shaun@dunntring.freeserve.co.uk>
London, UK
Thursday, March 11, 1999 at 17:50:51 (EST)
Howdy! I am 18 and have been suffering from the terrible CH since I was in fourth
grade! And to make mattters worse I'm a female and have to deal with PMS also! I'm not the
only one in my family who gets these headaches. My dad who is 45 also gets them. He first
introduced me to using Oxygen. I now have an Oxygen tank in my dorm room at college. I
have tried many prescriptions and haven't found one that REALLY works. Right now along
with Oxygen, I am taking Maxalt which disolves in your mouth. Maxalt works on getting rid
of the headache for a period of time, but the "beast" always returns. And to
make matters worse, you only get 6 pills of Maxalt for $79.97. Oxygen seems to be the
trick for me. If anyone out there has any other remedies that work well for them, drop me
a note because I'm always open for new suggestions.
Kaycee Frewen <kaycnf@hotmail.com>
Hays, KS USA
Thursday, March 11, 1999 at 17:12:54 (EST)
Hi, I have just found this site and am so happy! I am 29 yrs of age and have
suffered from CH for 15 yrs. I am classified as a rare case and have not meet anyone yet
who suffers from CH. I have taken: Ergotmine (ugh), Emigran (both injection and tablet),
steroids, valium, verapamil, and most resently I have had to resort to shots of Morphine
from my dr. (last night at 10.30pm) he had never seen me with a full blown CH and is now
begining to understand the importance of more information been readily available to us
suffers. If anyone knows of any other treatments please please let me know. Does anyone
have trigger factors? I don't think I do but would be really interested in finding out if
any one else does. Thank you Siobhan
Siobhan Murray <sjmurray@iol.ioe>
Dublin, Ireland
Thursday, March 11, 1999 at 14:29:23 (EST)
I am 43 and had my first encounter with CH three weeks ago. I had no idea that
anything could hurt this badly. My doctor started me off with Percoset, no help. Next was
Tegritol, which turned me into a zombie with a headache. I am now on Verapamil 480mg, and
life is a little better. The most frustrating aspect of the ordeal has been boneheads
telling me that they "knew how I felt". Bull Stuff. My doctor told me to ignore
them. "They can feel for you, but they have no idea how you feel". In a sick
strange kind of way I am encouraged to find folks who really do know how I feel. Thanks
for being here.
Tom Daniels <tedaniels@prodigy.net>
USA
Thursday, March 11, 1999 at 10:43:26 (EST)
I am so should I say happy to know there are others out there who share in this
terrible pain and that I'm not just a cry baby.I've been suffering this alone since 1984
and it's not easy to get people to understand.
Annie M. <Annma @ compuserve.com>
Katy, Tx. USA
Thursday, March 11, 1999 at 00:28:42 (EST)
I have had severe (is there any other kind?) cluster headaches since I was about 18
(26 years ago). I used to get them every few months and they would last about a month. Now
they come every 12-14 months and still last 1-1 1/2 months. It is amazing how much I can
relate to some of the stories I have read. I told my pharmacist today that if I thought
heroin would help, I would do it in a heartbeat. There is, truly, nothing that I can think
of that I wouldn't take if I thought it would make the pain stop. The reason I came to
this site tonight was because he told of a Johns Hopkins study that showed some effecacy
of Dilantin and another drug used together to provide relief from cluster headaches,
specifically. I look forward to going through the site. It's getting late and I know
another one is coming sometime soon.
Mike Goldberg <mikeg1355@aol.com>
Austin, TX USA
Thursday, March 11, 1999 at 00:23:33 (EST)
i have had severe cluster headaches for about 5 years. The bouts last from 30
minutes to sometimes all days. I have been to many neurologists and am now on lithium and
predisone. It has affected by live severly especially when i get it at work. It is nice to
refreshing to see a sight like this on the Net and other people who suffer like me. Thanks
joel cornfield <jolson@Idirect.com>
toronto, Canada
Wednesday, March 10, 1999 at 21:42:32 (EST)
I have suffered from Cluster Headaches for about five years now. I am twenty five
years old. Just want to know of any medication that has worked for other victims.
Mike Robinson <asap@asapi.com>
Dayton, OH USA
Wednesday, March 10, 1999 at 19:10:13 (EST)
Hello in there! Haven't visited the site in about a month, and was eager to catch up
on all the latest. I tried the chat, it is Tuesday and I logged on at 10 pm central
time...nobody chatting. Disappointed, I guess I just missed it. Will try later. Have been
having a moderate CH period for about a month. Better that, than the first 20 years of
these monsters when they were pretty much every day 4 or 5 times, and most of them very
severe. Just want to reiterate what I have been saying for 3 months...find out what info
is available. Read everything. See another neurologist if you need to. Get the medication
that is effective for you. Live as painfreee a life as possible. Don't listen to these
quacks who say you are, just looking for drugs, or it's all in your head, or the latest I
saw...Gods will. BS!!! We will find a common factor that we all share, and together we
will figure this thing out and solve it once and for all. Hang in there.
Reece Bennett
Lafayette, La USA
Tuesday, March 09, 1999 at 23:37:17 (EST)
My cycle has been gradually increasing in intensity and frequency over the past 3-4
months. They're occuring on a daily (nightly) basis and sometimes 2 or 3 overnight. I'm
going to the doctor because the Verapamil (calan) 180 mgs daily just does not seem to do
anything more that keep the intensity level lower than what I've experienced in past
cycles. I'm growing tired of the headaches and do not look forward to bedtime at all. I
would suffer through a dozen more of them though, if I knew they would come to a halt.
Dennis Christensen <kalseecu@aol.com>
Kalamazoo, MI USA
Tuesday, March 09, 1999 at 23:30:22 (EST)
I'm a newly linked user, got hooked up 2 days ago. From the sound of things I'm one
of the lucky sufferers. My cycles can be 2-3 years apart and of relatively short duration,
although the few weeks do seem to take an eternity to end.
Jay <jbear@vianet.on.ca>
Sudbury, On Canada
Tuesday, March 09, 1999 at 22:51:13 (EST)
I have had cluster headaches for about 17 years now, doctors don't help much -
everything they give me helps but only for a few hours. The last day I had without a
headache was Jan 6-7 before that was sometime in June. I take 4-8 Excedrin a day. they
help for a few hours (same as the Imitrex-but cheaper) but now I have 4 bleeding ulcers
and my hemoglobin is down to 9 - so I am so very tired all the time. My husband tries to
understand but it wears on him too. He's always after me to go to the doctor - but I have
given up on them.
Sheila Grueschow <sgrueschow@careproviders.org>
Eagan, MNMn USA
Tuesday, March 09, 1999 at 19:20:38 (EST)
I do not suffer from cluster headaches but my husband does. He has suffered for
about 8 years. I just want to thank the person who got this site together. My hubby was so
excited to find this site and, yes, he did cry when he read about everyone else. I feel so
worthless when he gets a headache. We've tried just about everything. At least the Imitrex
takes the headaches away...but I wish the medical profession would put a little more
effort into finding a cure. Just because there's something to take the pain away once the
headache is there doesn't make it any easier on the person suffering. We all need to get
together and make some noise so maybe they will start listening and stop treating
sufferers like they're over-reacting.
Karen <Scoobyduke@aol.com>
wi USA
Tuesday, March 09, 1999 at 19:00:03 (EST)
I have suffered from cluster headaches for over 20 yrs...I still haven't found a Dr.
who can get rid of them I have been on all kinds of medicatons & so call treatments
& so far none have helped I hope I can find some kinds of answers here to at least
help me with them.. Thank you Sherry
sherry skaggs <tara@columbia.total-web.net>
columbia, Tn USA
Tuesday, March 09, 1999 at 11:37:42 (EST)
Hello. I have "officially" been diagnosed with cluster headaches. It took
visits to 2 GPs, an optometrist, and opthalmologist, a chiropracter, 3 visits to the ER,
and ear, nose throat specialist. The latter referred me to a neurologist who diagnosed
clusters rather reluctantly(he said they are rare in females). He prescribed prednisone
for 5 days and Imitrex spray. Within two days the major headache attacks were gone, but I
was still having constant headaches, feeling nauseous and pretty miserable all around. I
checked into the Scott and White Clinic in Temple Texas and they confirmed clusters. This
is my first bout ever and has been going on for 10 weeks although I only had the
"major attacks" for 7 consecutive days. I am hoping there is an end to these
headaches soon! It is a relief to find this site as info on CH is not very abundant. These
terrible headaches have affected my job and my family. I pray there is research being done
on this condition and we will all have effective help soon!
MARY S.
TX USA
Monday, March 08, 1999 at 19:21:35 (EST)
My dad has started to suffer from this painful occurrence. My family feels helpless.
I'm extremely concerned about it. My dad is 54 years old -- it's so unfair that a man who
has worked hard and struggled to support his family all of his life, now has to suffer
from such a horrible thing.
Elizabeth DeMovic <LDemovic@aol.com>
New York, NY USA
Monday, March 08, 1999 at 14:01:44 (EST)
Hello folks, I've suffered from the demon (cluster headaches) for 22 yrs. this site
is a god send. My headaches are pretty typical from the standpoint that I get them every 2
yrs. like clock work. when I first started to get them the doctors diagnosed migraines. It
wasn't long before I quit going to the doctors with the headaches. I just suffered through
them. My bouts usually last about 6 to8 weeks then they are gone. The different meds. I've
taken just seem to chase the headaches around and they always seem to catch up with me. I
don't know if age has anything to do with it or the CA's got worse but I eventually went
back to the Dr. actually a Pa. that was last year. She put me on Prednezone and the
headaches went away after one week.WOW!!! exacly one year later (within 2 days) I was
experiencing the corkscrewin the eye again. See what I mean these drugs just chase these
CA's around. My cycle had always been 2 yrs. anyway back to the prednezone again. Oh ya'
the imatrix too. the Imitrex pills don't work for me but the injectable does as does the
nasal. I am normally a strapping 6' 180 pound man I've worked hard all my life. I am the
father of six children but when I get these headaches I am reduced to the likes of a
sniveling baby. Plus I lose about 10 to 15 pounds every 2 yrs. over this deal. When
someone asks me what the CA's feel like I tell them "the only thing I can compare
them to is having a corkscew turned into my eye and then someone trying to pull it out. My
CA's have started again in a matter of weeks my pants will be falling off again from loss
of weight but I'll be alive and ready to live life to the fullest for another couple of
years. this site is like a beacon in the night when I found it and started reading I felt
a belonging I haven't felt in along time........I cried and....... I cried. Love, Gus
Magilke
Gus Magilke <gmag@northwinds.net>
Intenational Falls, mn USA
Sunday, March 07, 1999 at 19:29:43 (EST)
I am just beginning another cluster and was browsing the internet when I came across
this site. It is very informative and see that I am not alone as I have never met anyone
who suffers from CH.
Wayne B. <wcb@ici.net>
Taunton, MA USA
Sunday, March 07, 1999 at 16:14:49 (EST)
I've had clusters for 17 years this year. For the first 6 years, I was treated for
everything but cluster headaches. I was treated two years by a "quack" who was
sure I had a sinus infection. After finally finding a qualified doctor, I've used almost
every drug on the books. For the most part the best of these drugs have reduced the
intensity of the pain but none have stopped it completely. I am currently on 900mg
lithium. I still wake up during the night with an attack. If I get on the oxygen soon
enough, I can control the pain. Most of my clusters come in November and last till about
this time, about the middle of March. I can almost time the clusters. About 12 to 16 weeks
every year. It makes for a wonderful holiday season. During the 17 years, I went almost
two years without a cluster. The rest of the time I've had at least one cluster each year.
I'm 52, by the way. The clusters started when I was 35. I have a younger brother with
cluster headaches as well. I'm self employed now and work in my home. I almost have to.
During the clusters I can't keep regular hours. I do get much work done very early in the
morning, you know what I mean. I don't know why there is not more known about these
terrible headaches. There must not be enough of us yelling about them. None of the wonder
drugs have worked for me. I think it's time to find out what causes them. I pray that God
will have mercy on anyone who suffers from these beast, and that includes me.
Paul Adcock <pauladck@nstar.net>
Cameron, TX USA
Sunday, March 07, 1999 at 15:43:37 (EST)
My husband has suffered from cluster headaces for 23 years. They come on very 18 to
24 months and last about three months. He had his first attack on Feb the 28th after a 24
month remisson. First day one hour, second day two hours ect. After five days he started
taking excedrin migraine every four hours. He has not had a headace in three days now. I
don't know if the excedrin has helped or if they are just playing with him. The only
relief he has ever had is with the Imitrex shots. The pain stops in about 15 to 20 seconds
after the shot. If given in the arm, 40 to 50 seconds if given in the leg. His wonderful
doctor gave him the imitrex nasal spray three days ago but he has not had to try it yet. I
feel sure he will be given the chance to use it.We pray it works as well as the shots.
With no insurance the spray will be much better on the wallet. Feel free to e-mail. God be
with you.
Rita <Starbus@webtv.net>
MB, WV USA
Sunday, March 07, 1999 at 12:39:32 (EST)
Suffer from ch for last 10 years. Attacks last about 6 weeks and the go away for 1
to 2 years. Can find out the cause etc....
Charlotte Pratt <spratt@iafrica.com>
Johannesburg, South Africa
Sunday, March 07, 1999 at 01:12:49 (EST)
Suffer from ch for last 10 years. Attacks last about 6 weeks and the go away for 1
to 2 years. Can find out the cause etc....
Charlotte Pratt <spratt@iafrica.com>
Johannesburg, South Africa
Sunday, March 07, 1999 at 01:11:23 (EST)
Hello, I'm glad I've found this site. I'm a 62 year old male from Switzerland. My
neuro calls me an 'atypical' case of a CH patient: I'm a late-comer, my first attacks were
at the age of 56. I have some kind of 'hot spot' in my gums that I can feel with my tongue
even when in remission. During a bout this hot spot is sometimes hurting a little for
hours and then suddenly flares up within minutes to a full blast CH pain in my cheek. My
first GP prescribed some aspirin-type painkillers and considered CH only for a minute,
even he knew my sister had it for some years! Fortunately her retired and the new GP soon
sent me to the neuro. It took him about 10 min to diagnose CH. He put me on verapamil (489
mg during a bout, half in-between). That one can have an oxygen tank at home, I had to
tell him, he thought is was only available in hospital! When I take O2 at the first sign
of an attack (when the 'hot spot' gets hot) all is over in about 10 min, I didn't have
more than a 'two' in the past couple of years. In my current bout, since start of
february, an attack starts within 1.5 h of laying down, whether sleeping or not. This kept
me quite short of sleep, since I usually didn't bother to go to bed for a 4th time! For a
week I'm now taking naratriptan (Amerge) before going to bed and this gives me a full
ration of sleep and only a slight attack around breakfast time. - From what I read on this
site, I am better off than most of you and I wish you all much success in your fight
against this demon, Ueli.
Ulrich Nyffenegger <ulrichnyffenegger@pop.agri.ch>
Niedererlinsbach, SO Switzerland
Saturday, March 06, 1999 at 20:49:57 (EST)
I have suffered from cluster headaches for 8 years and became very emotional when I
found this website. It does help to know there's others out there. I think it's a shame
how little non-sufferers (this includes medical professionals) understand our pain. I look
forward to reading what's in the site and to chatting with you all soon. Hang in there. My
thoughts are with you.
Jimm <KLeesMan4@aol.com>
wi USA
Saturday, March 06, 1999 at 20:11:52 (EST)
I have been an episodic female sufferer for 15 years. Cluster headaches have given
me a lot of pain for almost half of my life but they have given me many good things too. I
appreciate every day and life in geneneral, I am a very compasionate person and living
through such pain gives you some kind of mental strength (After it is over - can you tell
I am in remission now?) I know how horrible it is but think about the good things as much
as you can and headache free days to come. Good luck! P.S. Are there any female sufferers
who have made it through pregnancy?
Laura <dudes@nac.net>
USA
Saturday, March 06, 1999 at 19:36:54 (EST)
Hello everyone, I've had cluster headaches for about 22 years. Finally found relief
6 yrs ago with lithium and elavil. Around Jan. 4th headaches came back like they were
trying to make up for lost time. It was awful 3 to 4 ha's a day and some during the night
also. Thanks to this website I offered some of the medications I saw here to my
neurologist and he put me on verapamil and within a week the ha's were under control
again. Thank you everyone for your sharing. I pray that we all can someday be rid of these
monsters(a cure?)and be able to live like "normal" human beings. Peace and
pain-free to all cluster sufferers.
ken <kbearman@netscape.net>
spfld, ma USA
Saturday, March 06, 1999 at 18:12:49 (EST)
A Cluster sufferer for over 12 years (diagnosed). I've been through about all
medical treatments Doctors could think of and I'm convienced that Cluster Headache
sufferers are lab rats! Try this, take that, stand on your head, bark like a dog. The fact
Doctors have no clue what causes Clusters gives them license to experiment. They don't
consider the "triggers". The element(s) that bring on a session. My records of
the past 8 years indicate my trigger changes. I have changed lifestyle and diet with only
a change of the "trigger". My last session four years ago pumped me full of some
radical and somewhat dangerous drugs. The session was in it's 6th month when I went to a
Chiropractor. Within three weeks of treatment, the session ceased. My present session was
brought about by an allergy attack. I'm convienced that Clusters are a individual
condition. In other words, everyone has their "trigger(s)". That's why whay
works for one person may not work for another and what seemed to have worked for one
session, does appear to work for another. Cluster Headache treatment is like treating an
infection without curing what caused the infection in the first place. Doctor's can only
treat the symptons and that only masks what the real problem is. This seesion just started
and I'll seek a Chiroprator for allergy medication isn't really helping. I'll let you
know.
Edd Schuller <eddmon@worldnet.att.net>
Rio Rancho, NM USA
Saturday, March 06, 1999 at 14:01:36 (EST)
A Cluster sufferer for over 12 years (diagnosed). I've been through about all
medical treatments Doctors could think of and I'm convienced that Cluster Headache
sufferers are lab rats! Try this, take that, stand on your head, bark like a dog. The fact
Doctors have no clue what causes Clusters gives them license to experiment. They don't
consider the "triggers". The element(s) that bring on a session. My records of
the past 8 years indicate my trigger changes. I have changed lifestyle and diet with only
a change of the "trigger". My last session four years ago pumped me full of some
radical and somewhat dangerous drugs. The session was in it's 6th month when I went to a
Chiropractor. Within three weeks of treatment, the session ceased. My present session was
brought about by an allergy attack. I'm convienced that Clusters are a individual
condition. In other words, everyone has their "trigger(s)". That's why whay
works for one person may not work for another and what seemed to have worked for one
session, does appear to work for another. Cluster Headache treatment is like treating an
infection without curing what caused the infection in the first place. Doctor's can only
treat the symptons and that only masks what the real problem is. This seesion just started
and I'll seek a Chiroprator for allergy medication isn't really helping. I'll let you
know.
Edd Schuller <eddmon@worldnet.att.net>
Rio Rancho, NM USA
Saturday, March 06, 1999 at 14:00:16 (EST)
It was so great to find this site ! I'm 42 years old and on my 25 year of clusters.
Sometimes I feel as if I'm two different people - One happy, active, alway laughing and
enjoy family and friends and then the dark side - crying for help, continues rocking back
and forth not able to see completely crippled and out of control. Thank God for a
wonderful husband who gets up every night and injects the imitrex, holds my hand and is
the silent warrior. I am blessed with a wonderful doctor who i found in Derry N H . There
are not to many like him and he works with me. I've had some real bad doctors (or so they
called themselves that) One told me that the reason I got Clusters was because God didn't
like me. Well thats a professional for you. My only advise is to hold on try new pills
that are offered and pray for a cure. I see my doctor on monday and i"ll let him know
the lithium is not working and we'll go onto another. Imitrex has bad side affects but it
beats the pain. O2 worked great but deliery was a problem. God Bless I'll keep you in my
prayers
Cheryl G. <castortroy@earthlink.net>
salem, nh USA
Saturday, March 06, 1999 at 10:21:42 (EST)
hello, I've been suffering from CH for seven years. My wife found this site last
night, after I had had an extremely rough day. The information about cluster headaches is
my new bible. I'm glad to know I'm not the only sufferer out here! Good luck to all! May
someday we all be pain free.
matt harris <stharris@am-dew.nevada.edu>
las vegas, nv USA
Saturday, March 06, 1999 at 08:36:39 (EST)
Ive had Eposodic CH for 18 years. (I learned that from this site! Not my doctor!) Im
36 with blue eyes, if that means anything. I get my headaches 2 to 3 times a year with a
"cluster" lasting 3 to 5 weeks. Verapimil 600 mgs/day has helped the frequency
of headache. I have not tried O2 yet, but will soon. Its funny, I brought some info that I
learned from this web site to my nuerologist and he seemed kind of pissed that I was
making suggestions for treatment! I dont need an advisary, I need a doctor who can help.
Does anyone know of a great CH doctor in the Washington, DC area? I'm close to the end of
my rope! I wish we did not have a need for this site. I started to cry when I read all
your letters. Thank you so much to the "founder" of this site. God bless you!
Mike <Mortmikek@aol.com>
Springfield, VA USA
Friday, March 05, 1999 at 22:03:40 (EST)
I am pleased to be able to access a cite that is exclusive to cluster headache
sufferers. I was diagnosed in 1980 and have been episodic and have been in periods of
chonisity for two to three years at a time. Those chonic periods were without remission
during the entire year. I have had trials of nearly all the drugs that I see mentioned
here. My magic bullet has been Verapamil in high doses for prophylaxis. I have followed a
structured regiment when I have attacks. If holding my left temple fails; I hit the
shower. If the shower fails I head for the O2. O2 works in most cases. I cannot tolerate
Imitrex and I am forced to suffer until a Percodan or some other analgesic takes effect.
Recently, a headache was aborted with the vapor effect of a peppermint hard candy. I am
convinced that the malady is a neurobiological disturbance linked to sleep disturbance and
some TAI malfunction. Complex enough to avoid any simple intervention. Clusters just make
life suck sometimes. As most sufferers understand, there is no one who is able to truly
understand what life is like for us. Most folk think I just get moody. One interesting
part of the demographics that I have noted is that most sufferers are highly intelligent
and well educated. May you all enjoy your good days.
John W. Mac Millen <jmacmill@cub.kcnet.org>
Mill Hall, PA USA
Friday, March 05, 1999 at 21:40:01 (EST)
I am pleased to be able to access a cite that is exclusive to cluster headache
sufferers. I was diagnosed in 1980 and have been episodic and have been in periods of
chonisity for two to three years at a time. Those chonic periods were without remission
during the entire year. I have had trials of nearly all the drugs that I see mentioned
here. My magic bullet has been Verapamil in high doses for prophylaxis. I have followed a
structured regiment when I have attacks. If holding my left temple fails; I hit the
shower. If the shower fails I head for the O2. O2 works in most cases. I cannot tolerate
Imitrex and I am forced to suffer until a Percodan or some other analgesic takes effect.
Recently, a headache was aborted with the vapor effect of a peppermint hard candy. I am
convinced that the malady is a neurobiological disturbance linked to sleep disturbance and
some TAI malfunction. Complex enough to avoid any simple intervention. Clusters just make
life suck sometimes. As most sufferers understand, there is no one who is able to truly
understand what life is like for us. Most folk think I just get moody. One interesting
part of the demographics that I have noted is that most sufferers are highly intelligent
and well educated. May you all enjoy your good days.
John W. Mac Millen <jmacmill@cub.kcnet.org>
Mill Hall, PA USA
Friday, March 05, 1999 at 21:39:51 (EST)
Hello. I am really happy to find this site. I am trying to complete graduate school
and started getting clusters 2 years ago, at age 24. After 4 trips to the ER, I was
finally referred to a neurologist who diagnosed my condition within one week. I don't know
anyone personally that gets clusters, and have had to deal with the typical "it's all
psychological" and "all you need is a good night's sleep" talk. I wish
there was someway to educate the general public about this condition. I had never heard of
cluster headaches before and a majority of people have never heard of them. I just
recently ended a 2 year pain-free period and have had clusters now for about 2 weeks,
occurring about every other day and ALWAYS at night. I am trying verapimil and take Stadol
NS for the pain. The Stadol NS works great, I highly recommend it after not having success
with Imitrex, Codeine, Duradrin, Darvocet, and other pain relievers. I now realise I will
probably have to deal with this the rest of my life and this wasn't some kind of
"fluke" thing-it scares me. Feel free to respond via e-mail, especially the
female sufferers. I would love insight as I'm sure you would.
Andrea English <aenglish@cellmate.cb.uga.edu>
GA USA
Friday, March 05, 1999 at 16:29:54 (EST)
Guess I'm pretty lucky. Just started my 1st bout 3 weeks ago. Now to a point that I
had my wife put my pistol where I can't get to it. Constant pain above left eye now, but
CAFFERGOT seems to help a lot, with the excepion of surprise attacks. Not looking forward
to writing messages here 2, 3, 5, 10, 20 years from now, so I am willing to do anything to
make them go away. So glad to have found this site. Will watch, and add what I can, often.
David Zug <ddzug@aol.com>
St. Petersburg, Fl USA
Friday, March 05, 1999 at 15:16:12 (EST)
Great site!! I've suffered for 21 years. Imitrex shots work well for me most of the
time, but insurance will only pay for 6 per month. I'm in a cycle now and it's been about
5 weeks or so. It's hell. Take care all and I wish you no more pain.
Charlene <rchpros@aol.com>
USA
Friday, March 05, 1999 at 15:04:27 (EST)
Hello. I have suffered from cluster headaches for 11 years now. Unfortunately the
first seven years it went undiagnosed by my doctor. I usually get it between 8 and 9am and
they last about 45 minutes. The symptoms I get follow classic CH. Sensitivisty to light,
pain behind my left eye going down to my jaw, nasal congestion, and I start sweating as if
I had been exercising. Usually while I have one I tend to turn my head to the left and
breath rapidly. This seems to help a bit. Also pressing against my left temple helps too.
I have been using mostly verapamil for the past four years, which has worked great unless
I get a bad cold or the flu. Then it becomes ineffective. I just discovered this site and
its great to see so much information on CH. I wish everyone the best of luck in fighting
this problem.
Larry Rosenzweig <lrosenz@voicenet.com>
King of Prussia, PA USA
Friday, March 05, 1999 at 08:27:10 (EST)
Great Site! It is a bit overpowering reading about all the suffering. Have also been
to the edge and thankfull - back. Am still alive because I did not know how say goodby to
my wife and two childern. I waisted three years in total pain with local doctors - it is
the best way to not get help. Got myself into the Diamond Headach Clinic in Chicago. Was
diagnosed with atypical chronic cluster H.A. and helped on first visit. Have since
switched to a neurologist closer to home. Dr Somerville in Green Bay, WI. 888-494-9700.
Like him a lot. Am down to one visit a year to maintain my prescription. It has been three
wonderful years without clusters. Warning about the Diamond Clinic - altho they saved my
life they were suspiciously quick to promote their 11 day IV histamine blocking treatment.
Please ask questions and make informed decisions. Good luck - there is help out there!!
Leo Aufdermauer <aufdemauerL@emotors.com>
Sturgeon Bay, wi USA
Friday, March 05, 1999 at 07:59:17 (EST)
Turned 51 the beginning of December '98, and got a great birthday present, my first
bout of bizarre headaches that made me want to kill myself the pain was so intense. My
wife thought I was imagining things until one night one of these things curled me into a
fetal position it hurt so bad and I begged her to take me to the hospital. You guessed it,
cluster headaches (they had been occuring for approximately six weeks at that point in
time, at exactly the same time every day, and lasting between 2.5 and 3 hours apiece. The
pain would start in my temple, crawl around my eye and into my upper teeth. I thought I
had a tumor, abscessed tooth, sinus infection, you name it. Nothing took the pain away.
Finally after trips to my interist, ophthalmologist, local E.R., brains scans, sinus CTs,
I was directed to a neurologist who prescribed ergotamine and O2. The ergotamine has
pushed the cycle now out to about one headache every three or four days (what a relief
from daily), and the O2 is a magic wand. I can't wait to have the cycle abate for a few
months so I can get back to normalcy, even though I've been told that I probably will
experience these monsters in the future on a cyclic basis. All I can say is I would not
wish these headaches on my worst enemy. Thanks for being here and it certainly puttiing me
at ease knowing that I'm not imagining the magnitude of these debilitating headaches when
they get going.
Bill Bish <stenos@raex.com>
Akron, OH USA
Thursday, March 04, 1999 at 22:25:35 (EST)
I started my second cycle in Dec. 1998. It had been 5 years since my last episode
which lasted a very intense 5 months. My first cycle consisted of about 4 or 5 intense
headaches lasting 30-60 minutes in average duration. My suffering was indescibable. My
doctor treated me with all the typical treatments such as prednisone, verapimil, lithium,
oxygen, and finally Imitrex injections. The only relief was from the Imitrex. Within days
of my most recent cycle start, I visited the headache clinic at the Cleveland Clinic.
Before my appointment, I visited this website and read about some success people had
realized from the drug Sansert or Methylsergide. So I suggested this treatment to my
doctor. Relief was achieved within a week and after one month of 4mg/4 times per day, the
only remnant was periodic "ghost" pain. I am still taking the Sansert with no
adverse side effects. I even had my oxygen tanks returned to the medical supply store.
What a relief. I strongly recommend trying this drug to all my fellow sufferers. E-mail me
if you want.
LON HAIDET <LHAIDET@AOL.COM>
N. CANTON, OH USA
Thursday, March 04, 1999 at 17:41:15 (EST)
Just started a new episode after a 6 year headache free period.
Bill Cowperthwaite <simpsons@travel-net.com>
Cumberland, ON Canada
Thursday, March 04, 1999 at 12:42:49 (EST)
I am 31, female and have suffered with cluster headaches for the last 6 years. After
trying numerous medications to no avail I have at last been treated.(I hope) with
PREDNISOLONE. The only downfall I have to come off them know.
Tanya <scorpio@cancer98.freeserve.co.uk>
Norfolk, U.K
Wednesday, March 03, 1999 at 18:02:22 (EST)
I have had chronic cs for 10 yeras the only thing that helps me is acupunture and
100mgs of Elavil please do your self a favor and try it
Bob Trice
Fremont, ca USA
Wednesday, March 03, 1999 at 15:29:49 (EST)
My father has been getting CH for years. I'm very glad I found this spot. I'lll have
to pass all the information on to him!
Janel Ebnet <janelje@hotmail.com>
Mpls, MN USA
Wednesday, March 03, 1999 at 13:29:00 (EST)
I was just dignosed with cluster headaches, the pain is enough to make a grown man
cry. The hardest part aside from the pain is your family, friends, etc. not beleving how
much pain you are going through. The pain usually comes at night just before bed or right
before I fall asleep. At times I just want to pull my head off, you can't sleep you can't
even try and relax the pain is so intense it sometimes feels like you're getting Stabed in
the side of the head that hurts over and over again. There is hope with modern medicine.
anoymous
USA
Tuesday, March 02, 1999 at 21:53:28 (EST)
Thank you so much for this information. My father was diagnosed with cluster
headaches a few weeks ago and we are struggling for answers and assistance. My Mom and I
do our best to get him through each and every night. He is a heavy smoker and in his 50's
but has suffered on and off for several years. They have just started to hit him really
hard. In our family, when one suffers, we all suffer. Thanks again!
Denise W.
Columbus, NE USA
Tuesday, March 02, 1999 at 20:29:24 (EST)
For the past 14 years (since high school), I've had episodic cluster headaches every
19 months or so. This is the first time I'm using the Imitrex nasal spray, and so far,
it's working OK. I consider myself fortunate among sufferers since I'm not chronic, I
usually don't get any pain at night, my cycles are only 6 weeks, the pain-free period is
reasonably long, and I respond fairly well to drugs. I can only imagine what it's like to
get clusters worse than I do, since as far as I'm concerned, my situation already feels
like pure hell. My sincerest sympathies to those who do get it worse. At least compared to
10 years ago, there are more treatments, and there is more info. readily available such as
this Website. Progress is the hope for all cluster headache sufferers!
J. Iwamoto <nifco-jun@worldnet.att.net>
Reynoldsburg, OH USA
Tuesday, March 02, 1999 at 15:07:46 (EST)
Although I wish I didn't have to be here, I am SO glad I found this site. It helps a
lot to know there are people out there who have "been there" and understand. I
am a 29 year old female who has been suffering with cluster headaches since the age of 12.
After countless misdiagnoses and medications, I have come to the conclusion that they are
here to stay. It's nice to meet you all! Susan
Susan Davis
USA
Tuesday, March 02, 1999 at 15:06:32 (EST)
Twenty year sufferer. Glad to be aboard!
David Schwartz <BTP73SA>
Beachwood, Oh USA
Tuesday, March 02, 1999 at 14:01:30 (EST)
Hi! I am so thankful to have been directed to this page. When I tell others what I'm
going through they don't understand. The sympathize, but don't understand. I have been
having clusters since the fall of 97. Mine always wake me up right at about 1:30am to
2:00am. If I don't get rid of the headache then I usually have it for the remainder of the
day. My doctor put me on Methysergide and it worked. I stayed on them for six months to
ensure the cycle was over. I stayed pain free for over a year and now they are back. My
doctor moved and I'm now trying to find a new one. I was going to go through all the drugs
that I've tried, but I know that you've all been there. Right now I'm using Midron, I know
the spelling isn't correct, which rather than a preventive is more of a reactive response.
It works somewhat to get me back to sleep, plus I'll use the hot shower on the face
method. I've also found that if I roll up a hand towel, wet it down, stick it in the
microwave for 2 or 3 minutes, then wrap it in another towel and lay it on the left side of
my face where the pain is, it helps. When it gets too hot for my face I put it under my
neck. This really helps. God Bless all of you and I'll be around.
Chuck Herrin <chuck@havilandtelco.com>
Pratt, KS USA
Tuesday, March 02, 1999 at 10:14:44 (EST)
I've had clusters for about 7 years now, I diagnosed myself after being treated for
migraines, sinus infections, and tension headaches for about 5 years. I have tried all the
meds for preventitive and abortive, some have worked then stopped working, while others
didn't work at all. I think I am so messed up from all the side effects now I'm scared to
take anything now. I get by with Imitrex and Narc. pain killers when I can get them. I
have known this site was here almost since it has been here and have visited religoulsy
during my attacks, which seem to be going into remission for at the most a month then they
start back up, I hope no is upset that I have never introduced myself but have been
silenty visiting for so long, I do want to say though that you have all been a great help,
even though you didn't know. Thanks you all. P.S. I messed up that first entry, see why I
never tried before.
Jake M. <i.j.morfin@prodigy.net>
Salt Lake City, UT USA
Tuesday, March 02, 1999 at 01:56:09 (EST)
I've
Jake M. <i.j.morfin>
Salt Lake City, UT USA
Tuesday, March 02, 1999 at 00:34:09 (EST)
Hello all, I'm starting my 4th year of clusters. I'm cronic, they don't give me a
break, I average one every two to three nights. after reading some of the posts here, I
feel lucky. i have periods when i will have one or two every single day and night. I do
not live during these times, I try to shut down my mind and when I reappear I am thankful
but also mad, upon reflection i'm not sure who i'm thanking or who i'm mad at. the world
is a blur, caring becomes harder, pain is reality, darkness and quiet is what i seek. My
symptoms are classic, you all know to well what they are, I wish you did not. I have been
deeply moved by finding this site and reading about your pain, I wish it to end, be
strong, Thanx for listening, mike
Michael <mikekn@ihosts.net>
Richmond, Va USA
Monday, March 01, 1999 at 23:44:19 (EST)
Hello, i am also a CH sufferer. I have had them for going on two years now. I dont
know what to do for them anyore. Sometimes i feel like pulling my hair out, or banging my
head against the wall. I know when i am going to get one because it starts to hurt behind
my left eye. I have went to many doctors who prescribe Imitrex. Well i have tried it all
and still go to bed with them at night, and wake up with them in the morning. I am glad
thet there are other people who know what i am going through. Thanks for listenng.
Jennifer Carter <GEN24@webtv.net>
Wichita, ks USA
Monday, March 01, 1999 at 23:19:59 (EST)
i am in my seventh year of clusters. i am currently in remission. it seems comical,
but my close friends who know of my plight ask me how my headachs are. right now i can say
it is not my season. but i know its coming. i agree with another message posted which
recommends excedren migraine. it has been working during my "off season".
otherwise it is lots of veralin, lithium or other steriods that blow my body away. i can't
tell whats worse the drugs or the pain. anyway, i will keep you posted.
ned sokoloff <ned@specialtygroup.com>
pittsburgh, USA
Monday, March 01, 1999 at 22:03:04 (EST)
I have not been back here for a little while. I have had CCH for about 22 years,
tried everything the good doctors could come up with including Imitrex. I just wish that
some of the things that seem to work for most of you would have worked for me. So far, the
best solution I have discovered is not legal for me to take. I have not found a doc who
would prescribe it even if I thought he could. Since I am one of the rare people that is
alergic to most local anasthetics, the only one I can take in very small quantities is
cocaine. I have found that this is the only thing that works for me. A very small amount
on a regular basis will get me through the day without a full blown headache, but at
night, a little bit more will make a full blown headache go away much faster. I read about
this therapy somewhere, and it sounded like a last ditch thing. There must be some
additional research into why/how it works, if anyone knows anything about it, or about any
other drug that works like it, I would like to know.
Dave Seidl
Livermore, ca USA
Monday, March 01, 1999 at 16:00:32 (EST)
I have suffered CH's for 13 years now. When I was in the service a doctor prescibed
Norgesic for my headaches. It is a muscle relaxant aand most doctors would never think of
it. After tring many different prescription medications I got my hands on a PDR a looked
the drug up myself and had my doctor prescribe it to me. Betweeen Norgesic/Norgesic Forte
and Exederin Migraine I remained virtually headache free this past season. If you have
never tried these medications I highly recommend that you do. It could be the cure to your
nightmare as it is to mine.
Lane <lsadger@microgear.net>
Shreveport, LA USA
Monday, March 01, 1999 at 11:04:12 (EST)
2 Excedrin Migraine caplets @ 1st notice of onset works wonderfully for me. I
recommend all headache sufferers try it. It is much cheaper than prescription. You may be
skeptical,as I was, but try it and I hope it works as well for you as it does for me.
Lane <lsadger@microgear.net>
Shreveport, LA USA
Monday, March 01, 1999 at 10:33:54 (EST)
