hello folks,

My name is Bob W. and I am working with Doctors/Researchers at McLean
Hospital
(Harvard Medical
School) on a couple of projects. I hope you will not consider this an
intrusion as I need
some help that you may be able to provide.

I am a cluster headache sufferer. Similar to migraines but much more
painful. They are
also know as suicide headaches. I promise to get to the connection but
I think I need to
give a little background first as I am a new poster.

There is a treatment that some people use to help with Cluster
Headaches.
It may help with migraines also, so if anyone has tried this and
it works, or doesn't, let me know.

It is drinking a LOT of cold water to abort a headache. No one that we
know of has ever
looked into this or discussed why it might work. (it does work for
some cluster people)
We are trying to find out why it may work, which may lead us to better
treatments.

Here are some thoughts on the subject and some info...(much of which
you understand,
hence the reason I come to you now)
Drinking cold water stimulates the vagus nerve--cranial
nerve ten--that runs down the back of the esophagus to innervate most
of the vital organs under autonomic control.  Although the vagus nerve
is outflow only,
researchers have discovered that by stimulating it peripherally it is
possible to send
impulses directly into the brainstem, which effectively? (you tell me)
terminates seizures
and--some recent research appears to show--controls bipolar disease.

I understand a typical schedule for VNS (vagal nerve stimulation) is
30 seconds of
stimulation every 5 minutes, which is much more frequent than the
water treatment recommends, (as much as possible in as short a time as
possible, several
times a day) but
then--cluster headaches are not epilepsy.

We figured the best first step in investigating this would simply be
to find a cluster
headache sufferer who had VNS implantation for control of epilepsy,
and ask them if the
VNS had made any difference to the frequency or duration of their
clusters.  About 12000
people internationally have had
the device implanted thus far, so we could expect 24 of them to have
cluster headaches,
assuming no relation between the two disorders.

So...are any of those 24 in this room? ;-)
I am searching all the internet haystacks, looking for my needle.

Any of you know of anyone that have had this device implanted that
also suffers from
Cluster Headaches? Even if it is someone that has migraines and not
clusters...I would like
to speak with them.
You never know.

Any professionals reading know of anyone that might fit the bill?

You can email me directly.
If you require more information regarding this fact finding project, I
will give you the
names and email addresses of the Doctors involved if you write to me
and ask. If you'd
prefer to give them your information, they would be happy to talk to
you. I understand
this can be sensitive medical information and I wouldn't expect anyone
to hand it over to
some stranger on usenet. (been around 10 years on usenet so I wouldn't
ever do it either) I
will give you all the info you need to properly check this out
beforehand. Just let me
know, please.

thanks in advance,
Bob W.