sometimes life just isn't fair. Hopefully a cure or at least medication can be found.
TMJ

Again, another of the things I appreciate about this forum. Any of us could run into each other at a show, cruise or whatever without a clue about the other's circumstances. It takes a lot of courage to put yourself out there, centre stage, just to try and create awareness about an affliction. Tom, I hope you find solace through the empathy of others here who have issues of their own, who like you suffer while others cruise through life without a care. You're absolutely correct Model A Guy, Too Much Junk too, life often is not fair so it's up to us to draw the best we can from it. All too often we get caught up in issues that really, at the end of the day,  aren't all that important when one considers the big picture. Be well Tom.

-- Edited by Iwannagofast on Friday 13th of February 2015 06:51:39 AM

Well done Tom!!

Again, thank you. The feedback and response has been a bit overwhelming. Alot of survivors have come forth. It was kind of a bad week to air. Having had 2 fellow cluster heads commit suicide a week apart and a personal friends funeral saturday, it was a lot to contend with.

The passing of these two and the usual "1 per month" that I know about that commits suicide over this disease is what motivates me to do this stuff. This news story on CH is only a fraction of the advocacy I have done since 2010. Our Canadian Foundation is in its infancy stages. But the word can't is not in my vocabulary. Many positive things have happened for the disease is in the past 24 months and it will continue to grow. Although there is no cure. There is band aids out there.

The disease affects 0.01% of the worlds population. 90% are episodic. 10% are chronic like me. I too have migraines and tension headaches which makes my percent far lower. Attacks last 30 min to 3 hours long each and I can have 1-15 per day. This disease has robbed far more than the 16,000-20,000 hours of my life. My career, relationships,friends, and my vanity.

First step is advocacy. As I read a suicide letter from a mother sent to me from her 22 year old daughter whom not committed suicide from the disease yet abandonment from her friends I too can relate. Some do not get past the dark abyss, I was lucky. The saddest part of this disease is that people assume we fake,play it up or it couldn't possibly be that bad. If you do some research you will find it ranks #1 as the worlds most painful disease known to medical science. I can very easily back that statement up from world renowned physicians not just myself.

I didn't have my head drilled into awake,"if it wasn't that bad". The documentary segment and future films of myself and others are to come only until we can ask 1000 people at random what a suicide headache is and get 1000 informed answers. Until then i still get asked or statements...oh like a migraine. No sir, thats comparing a paper cut to a bullet wound. There are those who suffer in silence and that is a-ok. And there are those who had taken their life and then there is people like me.

One more educated person on Suicide Headaches is one less survivor living in fear.

I know this is a car site. but I am also a gear head. That the disease can not take from me

Great it read tom ,

Randy, great idea. I have a fellow gear head/artist pony up his art work for a fund raiser. www.facebook.com/MylesLimbrickArtStudio perhaps we an encorporate the two. He offered to do a show board of transportation theme(car/bike,etc) and donate the cost of the board,art work etc to a winner.
I will pay the shipping out of my pocket.
We could do basically donations in a bucket, and a draw for the show board.
It would be great for a non judged show. Any means of transportation should be welcome. Bikes,trucks,vans,muscle,hotrod, and even...imports....
I say this because the disease plays no favourites. It affects every continent in the world. Women, men, and children.
I will do anything I can do to help.

I just think nailing down a date will be key because of so many other summer shows going on.
I am going to speak to our founder www.clustersuicideheadache.org and see what we can come up with.
Because its a bit of a trip....say a 12 noon to 5pm show? Gives people to drive there and home within reason?
I got dibs on the tree shade ;) (heat and my attacks don't mix well)
Randy, can't thank you enough.

If possible I would like to pay tribute to those who have lost their battle to this disease, in their memory.
Sadly there will be many more until the show and after.

Off top of my head....Not ELTA Summer bash. Not Plunketts, Not Port Huron or Woodward Cruise.
Those are 4 I attend for sure.