Hi..this is my first time on line, I'm 63 and my CH started @34. back then it took me 3 years before I was diagnosed with the bitch. many hospitals and tests, they all sent me home with big bottles of codine. as the years went on I became cronic and addicted to pain killers. I found out the hard way if you take pain killers you will get rebound
CH I rember the day I flushed them down and went through the series with nothing, I would tell myself this builds charactor. Listen I'm not going to bore you with the stories but when they let us have the triptons my life changed then the o2 we now have a lot of great tools to work with and life for some of us is well, just o.k. Back of 2000 I became cronic and nothing helped. my doc sent ME to mayo where I added to my arsenal D>H>E 45 If you are cronic this helps a lot. WELL, to get to why im here, I was free for the last two years. The last two years of my life was like a gift from the gods. every day I got up was a good day and by god every one I was with new it. Today I had two attacks that rated a 10. On the second attack I found a outdated vile of D.H.E. 45  and a old seringe I used 2 years ago. It worked. Yea, I sucked on o2, it just blew through like a train on a mission. Right now I'm really pissed, but writting this helps. Listen If anyone out their is in trouble I know for a fact you will get through this. We have soooo many tools to help. Dont let my story discourage discourage you. As I do know I too will get through this. I'm just sooo friggen pissed off right now .I can testify without a shadow of a doubt this Bitch in our head willl  build charactor... I do love you all, and wish you well............
SHARK BOY

Have you and your doctor experimented with any preventative medications? A med you take daily to reduce the number and the intensity of your attacks? Lithium has been a Godsend for me, at 1200 mg a day it blocks 80-90% of my attacks, 02  and trex kills most of the rest. Verapamil has been succesful for many as has topomax. Might be worth a look see.

When you used the oxygen, how were you using it? To get the vasoconsticive effect CH needs, it's imperative your lungs get only 02, no outside air, no exhaled air. Best accomplished by using a NON RE BREATHER MASK,  a High Flow Regulator, at least 15 LPM, and it must be started at the first hint of an attack. Nasal canulas, low flow reulators, re breather masks, all have proven ineffective for many on the board. Might be worth reviewing, make sure your not giving up on a potentially effective treatment.

So glad you found us, 30 year sufferer here and this board is what gave me my sanity back!

Guiseppi

I gotta call BS on this one...

What self-respecting 63 year old calls himself SHARK BOY and uses words like 'friggen' and can't spell worth a shit?  I could be wrong, and I'll eat my words if this joker turns out to be for real, but I smell a troll, and I don't think this is a 63 year old troll either.

BS BS BS BS BS BS

Shark Boy, if you are for real, I'm sorry you have suffered this long.  However, I don't buy your stories.

-Fu the heartless

sorry i upset you, yea i'm 63 (i dont like it eather) and yea i am the worlds worst speller, as far as my name goes "shark boy" I earned that name a long time ago, maybe before you were even borne. a lot of my old friends still call me that. (sorry you dont like my name.) you dont think i have clusters, well that's your call. I dont like light when Im past a 5 nor do I like noise. as far as my exhaust fan goes, it really is a fart fan. I turn it on after leaving the rooom. As far as me being a troll, you got it right....Im just trolling for a new friend. I have learned we all need some extra friends I sincerly hope you have some.  Im still going to be arround unless someone kiks me out. beleive it or not I love you all cuzzz I know the pain you go through and I wish you all well....

shark boy

i'm very sensitive to light. never had nausea though. even during some of my worst attacks. i'm also somewhat claustrophobic during a hit. i need a little space to walk and pace sometimes. sometimes i'd hang out in the sleeper. i often wonder if people could hear me screaming outside walking around.