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Posted by DJ ( on May 03, 2001 at 22:18:05:

Wanted to pass this on......

Subject: cluster headache story

Dear Webmaster,

Yesterday, I was cruising around looking for technical information for a
friend of mine. I am a FORMER cluster headache sufferer, and I am trying to
help him. After reading through your site, I knew that I just had to share
the story of my CURE with all of your audience. I am not a crackpot or
kook! I am not selling anything! I have been pain free for 10 years, and
if there is a chance that this remedy will work for even one of the agonized
souls on your website, we need to take it. Please read the following story.
Is there any way that you can distribute it to the whole website at one time
or post it under a button, so everyone can see it? I started out thinking
that I would email it to everyone, but that would take forever!!!

Three GOOD things about Cluster Headaches!

(1) Strength. People who suffer from cluster headaches tend to be "Type
A" personalities. They are driven to succeed, intelligent and persistent.
After struggling to survive the day to day life with cluster headaches,
anything else is easy!

(2) Pain Tolerance. Many cluster headache patients are also runners,
swimmers, or competitors of some sort. I took up endurance racing; riding
my horse in 50 mile races. At the end of each race, I hurt all over. My
legs and hips are tied in knots; my back and shoulders feel like someone was
hitting me with a two by four. But it is nothing compared to the pain of
cluster headaches!

(3) Appreciation. Cluster headache sufferers are like many victims of
cancer, car wrecks or other life-threatening illnesses. In those all too
rare moments when we are pain free, or when the headaches have abated for a
few days or weeks, cluster headache patients are filled with a sense of just
how wonderful life can be and are appreciative of any and all small

I have been free from the chains of life as a cluster headache victim for 10
years now. My salvation and miracle came from a single paragraph published
in the early 1990's in Reader's Digest in their medical tips section. I
would like to share my story in hopes that others might also be helped and
find release from the burden of cluster headaches.

I started having cluster headaches when I was 17. Women aren't really
supposed to have them, so I went through hell getting them correctly
diagnosed. They were one-sided migraines, with excruciating pain in the
eyeball. They radiated out through the temple and then the whole side of my
head, accompanied by nausea, stuffed nasal passages, and sometimes heat
flushes. They fell into the "cluster" diagnosis because of the pattern of
frequency. They would start out slow; I would wake up with a headache the
first day, and then they would build to where I was having between 4 and 10
headaches a day. The length of each cluster episode varied. I had one
"set" of clusters that lasted almost 4 months before we got them shut down.
The time in between each cluster also varied, sometimes lasting 6 months and
sometimes as little as 1 month.

Over the next 20 years, I saw Eye, Ear, Nose & Throat doctors, Allergists,
Family Physicians, and Neurologists. I was even referred to a Psychologist!
The doctor told me I was just crazy. I was treated with ergots, cafergots,
antihistamines, amitriptoline, anti-depressants, tranquilizers, massive
doses of decadron, oxygen therapy, sansert, imitrex, and many other
treatments. Nothing seemed to work...they would always come back and each
time they seemed to be worse. The cluster episodes lasted longer, and there
was less time in between them. I was on the verge of giving up completely.
It was hell to have any kind of life and hold down a job, never knowing
when you would be incapacitated by the illness again. My doctor later told
me that suicide is a very common outcome for people with cluster headaches
and I was quickly approaching that point!

THEN, my mother read in Reader's Digest about the drug capsaicin, a
derivative of red pepper, brand name of Zostrix. It had been used for
diabetic neuropathy and arthritis pain. The article said that tests were
being done with cluster headache sufferers, and it seemed to help. Doctors
have strong negative feelings about clients finding their own cures, but I
had already given the doctors 20 YEARS to come up with a solution and I
wasn't going to make it much further.

We ran right out and got the Zostrix over the counter at a drugstore and IT
WORKED! . At the first sign of the next headache, I rubbed the cream over
the outside of my nose, cheekbone, and temple. In approximately 15-20
seconds, I noticed that my skin was starting to burn and tingle. As the
tingling got stronger, the headache was fading. In less than a minute, it
was completely gone!!!!! But something even better than that was yet to
come! I used it approximately 10 times the first day (the instant my head
would start again), then 6 the next, then 3 the next and then...a couple of
days went by, no headaches. Over the next couple of years, every once in a
while I would wake up with the start of a headache, rush out and smear my
face with the Zostrix and it kept working! It has now been 10 years that I
have been "cured" and at least 3 full years since I have had even the
beginnings of a headache.

My uneducated and non-medical theory is that these headaches are caused by
both chemical and physical changes in your head - deficiency in serontonin
or some other chemical needed for the neuropathic connections and resulting
constriction of the blood vessels. Once they get started, the interaction
just keeps getting worse. But, if you can stop the cycle or stop it from
even getting started, they will recede and then fade completely.

It has been ten years since I read that paragraph in Reader's Digest, and I
have never seen another word on capsaicin in any publication or article on
cluster headaches. What happened to that research?? Why wasn't the medical
community rushing to get out the good news? I have pored over medical
journals, internet websites and books on cluster headaches. On this website
, there are hundreds of stories of wrecked
lives and pain and suffering. They refer to the affliction as the Demon or
the Beast, as if it were an actual evil persona. In the educational
section, which details current knowledge and treatment of this debilitating
disease, doctors are still prescribing a witch's brew of drugs and even
surgery, but not one word about capsaicin.

I have kept quiet about my results. I haven't wanted to be branded as a
new-wave kook that recommends home remedies or goes against the medical
community. What if I recommended it to someone and it didn't work for them?
After hearing about a friend and fellow-sufferer who committed suicide, I
have decided that I have to spread the word. If capsaicin works for even 1
or 10 or 100 other people, it will be worth any amount of effort. Capsaicin
might not work for every case (nothing ever does), but if there's even the
slightest chance, what does the cluster headache patient have to lose?
Nothing, except the Demon. They stand to gain a whole new pain free world!

End of story - Thank you, webmaster, for having this site. The sharing and
support are critical. Non CH sufferers seem to think we are all a bunch of
babies - its just a headache! They just don't have ANY conception of what
it is like, so it is nice to interact with people that understand.

Please let me know if you will be able to use this. Feel free to call or
email me if you have any questions. Thanks again, Barbara

Barbara J. Mcgann, C.P.A.
Clear Channel Communications - Idaho
Boise/Pocatello/Idaho Falls/Twin Falls
Phone: 208-344-6363
Fax: 208-385-9064
Home phone: 208-286-7620

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