[Who does research on CH]

LOL. I know spelling is my worst problem.LOL

I am thinking if eBooking it first.

[Who does research on CH]

I am writing a book and want to donate 25% net profits to research, Anyone know a publisher who is intrested in hearing my story?Remaining 25% goes to Michael J Fox Foundation and other 50% my family. I want NOTHING.

[Who does research on CH]

I have spoken to Dr.Goadsby., He is a professor in nuerology ?

I am asking if there is a research lab  that researches the disease???

[Who does research on CH]

Its to my understanding that the Mayo Clinic in Florida does research on CH.

Is there anyone else who does research on CH?

Heard of anyone who does research in Canada?

Any proof?web links etc?

thanks

[2013 Clusterbusters Conference - Chicago]

wish I could afford to go :(

[How Many Ya'll Are Chronic]

i drink coke because I love the taste. I dont drink energy drinks because I loathe the taste.

[How Many Ya'll Are Chronic]

i just drink coca cola. I dont like energy drinks.

[Pot vs Shrooms]

Not playing devils advocate here because I dont bust or d pot but be carefull not to turn into an addict. Yes pot can lead to addiction. Just be careful is all I am saying

[Thankful Jar]

I just wrote a Gratitude blog other day.

I try to write positive 90% of the time

Whether its a jar, a blog, its  a great idea.

I am getting the feeling alot of you read my blog

blessings for a PFD for everyone

[Smoking / trigeminal-autonomic reflex in headache]

i miss smoking. I really enjoyed it. if anything it reduced my stress.....

but I dont want to end up like my dad....a neck breather who speaks with a machine. That reminder is enough to stay off the

coffin nails

[Pot vs Shrooms]

Chronic pain and certain nerve damage conditions too. In Nova Scotia anyway.Couple friends have permits and neither have glaucoma or MS. Must be a provincial thing.

Chronic pain and certain nerve damage conditions too. In Nova Scotia anyway.Couple friends have permits and neither have glaucoma or MS. Must be a provincial thing.

could be. I asked my doc who has to belong to the College of Ontario Doctors and Surgeons.

She said nope.

things change daily. And your right provincially things maybe different. but i never ever listen to what "a buddy" tells you. I believe my doctor whats legal...not a buddy.

I know alot of BUDDYS who claim things are legal...bahahaha

[Pot vs Shrooms]

Im from Canada and pot is legal here for medicinal purposes. Ive never tried it during an attack,but if i try to even have a few puffs off a cigerette when i feel one comin on it does not feel very good.I can see the benefits of the pot afterwards as far as relaxing and being able to sleep,cant be any worse for me then the anti anxiety and sleeping pills i am being prescribed now.

ONly if you have Glucama or MS. Only way to get pot pills prescribed.

[Smoking / trigeminal-autonomic reflex in headache]

I smoked 25+ years, Aug 23, 2011 my 1st brain surgery I quit. Have remained a non smoker to this very day. It made ZERO difference in my attacks.

I am a healthier person now and dont smell like smoke but i have no improvement since quitting

[Take the Jeebs-o-matic memory booster challenge!]

I will definately make note of this.

I will wait however for my results from the test.

thank you very much for the post

[Short term memory loss / blackout?]

I forget things immediately but 2 weeks later will recall incident. Scary and frustrating. Im 40 not 80.

[Short term memory loss / blackout?]

I went Friday to same hospital I had DBS.

They spent 8 hours doing memory testing on me because of my poor short term memory loss. My nuerosurgeon felt it was worth exploring.

did 1.5 hour medical assesment/history

Spent rest of day testing me verbally, written, and by drawings etc. My memory sucks bad.

I am afraid of 2 things. One they tell me I am 40 and its an age thing. Or two they diagnose me with something else to my resume of sh*t wrong with me.

I fear the latter.

I dont want to forget who I am, my wife and son. That I wont be able to cope with.

I get my results in end of April for a meeting.

Maybe this will justify me forgetting so much

[Japanese Medical Team Contacted me]

Video should be ready end of April??? Maybe beginning of May. Will post when I get it.

[Ten years of CH, nice to find another site]

welcome from one Canuck to another...eh

this site is an excellent resource of information.

I myself dont BUST but this is the site for proper information if you do. The people I call "Survivors" not sufferers are a wealth of info and will help you kindly.

Blessings

[How Many Ya'll Are Chronic]

will be 8 years chronic July 25.

I dont bust. Had 4 brain surgeries.

I have a strong faith in God, loving wife and amazing son

That keeps my 2 feet on the ground.

What works for some might not for others.

I dont comdemn nor condone use of drugs.

Personal choice. Your body, your journey

Many are educated here for excellent knowledge if intrested in the path of busting. To each their own.

Best wishes

[Japanese Medical Team Contacted me]

welcome Steve.

AS I state in my description."for education,not pity"

Letting others they are not alone and support is out there.

My videos are getting recognition around the world.

I always wanted to be famous...but not this way.

If I help just 1 person...it was all worth it. The blog, the videos...any of it...to save one...is all I am after, and spread awareness and to show the non sufferers...what we deal with...

again, thanks for your kind words

[Japanese Medical Team Contacted me]

Thats great Jack1970. I do not BUST though.

Here is link

http://www.youtube.com/user/ClusterHeadSurvivor

[Japanese Medical Team Contacted me]

sure PM me your email. Ill try to locate it and find it.

My videos are on my YouTube Channel

"ClusterHeadSurvivor"

and some vids are on my blog.

thank you

[Japanese Medical Team Contacted me]

A japenese team contacted me asking permission to use my videos.

This is the 3rd time.

1st was Switzerland

2nd France

I was heistant because the fellow in Switzerland once given permisison I never heard back as I asked for copy of what he needed it for

2nd perosn in Paris made some sort of prsentation. When I asked for a copy , he sent me a PDF in french. I dont read french;

Now this fellow. I gave him persmission based on the premis to help others being diagnosed. Help doctors diagnose and help others.

I dont mind helping but just not at the expence of my video where they make profit.

He said they are making it avail to anyone free. To help doctors diagnose and patients to get help and treatment. I am all for that so gave him permission. I will share when it becomes available.

I keep telling my wife I will be famous one day. lol

Just not the way I wanted to be famous,lol

[Expired Imitrex]

i used some and they were 3 years expired. Lost potency.

I dont recommend it but like others. No choice.

[my funny for the day...]

O2 no work for me. Nor does any other medicated drug. Imitrex is last resort for me because It makes me very very sick, I give myself a shot when my wife has to work early so I dont ruin another night of sleep for her.