Hi all. I normally do not join message boards or anything. I just wanted to say thank you. I was lucky enough to get my hands on a large bottle of Oxygen, non-rebreather and a 15lps regulator (the 15 seems fine for me). I'm 38 now. I've had this damn thing since I was about 17. I've been to the doctor countless times over the years and was given antibiotics mostly. Mine always starts in beginning of winter (New York) and lasts a few months (at least 1 attack a night). I get the occasional attacks in the summer. I imagine I do not have to explain how bad the pain is to most of you. Well, I had a really wicked attack the other night. It was so bad that I thought I was gonna die. Either from a heart attack or me possibly putting a knife in my throat. I started doing some more research on what the Hell this could be and found this place ;). I cannot tell you what a relief it is to wake up from a dead sleep now, and know I can stop the pain in its tracks. Having oxygen is a Godsend. I can not imagine not having it now...just in case. I've been waking up about 4 times a night lately with the unimaginable pain. Hope doctors step up their game one of these days. They all need the info on oxygen for CH sufferers. Thanks again. Sorry for my long rant lol

Welcome to the board, BillyZ. Good to hear you got the O2 and it is working for you.
Now, read read read. There's alot to learn here.

Welcome BillyZ. May I also add I'm glad to hear the O2 is available to you and helping. Can't help but wonder, though, why your doc hasn't prescribed an abortive like imitrex injections? Or even nasal sprays? We've discovered that the harder the hit, the longer it takes O2 to bring us back down. That's when trex really helps. Also, I and others find when we slam an energy drink then hit the O2, it helps relive the pain and abort the attack in less time. Good luck, and God bless. lance

Thanks for the responses. I actually pulled a few strings and got the O2 myself, without a prescription. I need to find a good doctor. I think I'm going to print out some literature to bring with me. The oxygen report looks like a good start.
I think I spoke too soon about the regulator I'm currently using. It doesn't seem to fill the non-rebreather bag fast enough for me. I may run over to Harbor Freight as someone on here suggested and get their regulator. Just had two (hour long) attacks and the O2 wasnt enough. I tried waiting about 10 minutes in between O2 breathing. Still wasn't enough. So I'm back to suffering for the time being.

The Optimask that can be ordered from this site is a great addition that can make a difference.  Especially designed for clusterheads, it makes a good seal against your face to ensure you're breathing only pure oxygen on each breath and can handle adequate volume. 

I'm a 52 year old episodic sufferer since the 1970's. I started the Batch regimen almost 3 years ago and have been pain free since. Go to the medicications section and read the link "123 pain free days and i think I know why". It's a daily vitamin/anti-inflammatory regimen that's good for you even without CH. Cheap, and well over 70% of the people who have tried it report substantial benefit to their CH. Keep going forward with the 02, has been  my abortive of choice forever, but do check out the Batch regimen.

Joe

I'll definitely check those out when I get home. You guys are very cool on here. I really appreciate it.

Welcome,

You didnt find us.... WE FOUND YOU!!!!! It took us awhile, and im sorry bout that. 8-)

Coach Bill 8-)

BillyZ - If we can be of any help, I am glad you are here! It's interesting that you mention your heart. A few of us have discussed how we feel that these things just HAVE to be hard on our hearts!

Hoping you can continue to explore and find what works best for you!

Marc