It’s been one year and seven months since I first read your challenge to all cluster headache patients for us to get active & advance the interest in treatments for our condition.

I took it very seriously. Your words felt accusingly painful at first but then I realized you were right! We did need to get organized, speak, ask and convey our message to an audience who could invest in the fundamentals such as education and research.

The Alliance for Headache Disorder Advocacy provided the vehicle for myself and many other cluster headache patients to be heard on March 27th, 2012 on Capital Hill. The event, known as, “Headache on the Hill”

http://www.allianceforheadacheadvocacy.org/who_is.htm

Led by Dr. Robert Shapiro, the event was a collaborative effort of 67 neurologists, migraine patients, cluster headache patients, attorneys and other professionals.

Thanks for challenging me to get active!!!!

To view photos follow the link below.

Sincerely,
Cindy Reynolds

https://picasaweb.google.com/116224999681657343555/HeadacheOnTheHill2012?authuser=0&authkey=Gv1sRgCJ6t0M6lw9WZGw&feat=directlink

[...]Cluster Attack – Bringing Cluster Headache Researchers and Patients Together[...]…

Collective voices.

The average cluster headache sufferer isn’t correctly diagnosed in many cases for years. During these years the seeds of “why” are firmly planted (probably wedged sideways in the cerebrum causing secondary pain to our primary pain).

Collective voices.

We are told “no” you do not have a brain tumor after; scheduling the primary care physician’s appointment, seeing primary care physician, scheduling appointment with neurologist after waiting weeks to get a referral to neurologist, seeing neurologist, scheduling MRI, CAT scan or lumbar puncture, having said procedure weeks later AND during this period trying to manage the pain of cluster headache itself.

Collective Voices.

When the “no” you do not have a brain tumor is finally said, we are exhausted, our families are relieved, our bosses expect our now declared “able” bodies back to a full 40 hour work week and then the whispering begins.

Most likely a period of 6 months has passed.

If you’re episodic, maybe your cycle has ended. If it has, you think, hope, pray this was a one time event. You put the horror of the medical system experience, the pain of the acute, recurring nightly attacks and the whispers in the “DO NOT TOUCH” files of your memory.

Collective Voices.

If your chronic, the whispers are changing into impatience, outright direct accusations of making “all this up”, “just get over it, you can not be in that much pain” coupled with the fact that the pain IS so great that you have returned to the neurologist, filled your triptan, prednisone and verapamil prescriptions and living now only to take your next dose, hoping that “surely, this one, this tiny little pill, will end all this madness so I can have my life back”.

And so you recede.

You do not know another living soul with this condition.

Collective Voices.

You get fired, you get divorced, you run out of insurance and you continue to have 5-10 attacks every single night.

You have no hope AND whats worse, you have very few (if any) symptoms (that others can see) to support that you have a neurological disorder not a headache. It’s called a “headache”…..”go lie down and get over it!”

I didn’t have a “rally” because from the beginning I’ve been slammed. Slammed with pain. Slammed with fear (brain tumor). Slammed with more fear (it’s night time). And still more fear (should I commit suicide).

Oh yes and now, of course, the most promising of medications that are being studied are classified as schedule 1 drugs with the DEA (whispers).

Collective Voices are assembling. It’s only a whisper at the moment, but it’s “our” whisper. Not the whispering of others about us!!

Cindy Reynolds
Episodic from 1977 through 2008
Chronic from 2008 to present