Posted by Dave Emond (64.12.105.48) on June 19, 2001 at 14:42:13:
Hi Friends,
Well, my little experiment failed. But, I guess someone had to try it. I'm the dummy who tried going almost 2 years med free. What I should have done was gone HMO free!
But, I've finally found a Neurologist who understands Cluster Headaches! She is very professional, kind, and responds within minutes of a phone call.
I've explained to her my past dealings with other neurologists and doctors and she has assurred me I will not be treated as I had been. I trust her.
She is starting me off slowly on Topamax, with a gradual esculating scale. Gave me some Imitex spray samples (the 1st thing that has even put a dent in the pain, not all of it, but I'll take a dent). Then, when all doctors before said it couldn't be done, 24 hours later, a healthcare company showed up at my door with oxygen tanks!
Here's where I need some advice. They only brought out regulators that allow flow up to 5. This does not do anything, I try to sit for 15 minutes at that, but can't stay still that long, and it doesn't work anyway.
I called the Neurologist this morning and she said, yes, I could have higher regulators, whatever I need to stop that pain as quickly as possible.
So, I know many of you use oxygen. What would be your recommendation?
It seems I've read before that a flow of 15 would abort a CH attack in about 5 minutes, do I remember correctly?
Even 5 minutes would be a long time to sit, but if I had the mindset it could work, I think I could handle it. Dang! I been handling it without anything for quite awhile now (maybe handling isn't the best word).
For those of you who don't know me, my experiment in not taking any medications was far from trying to prove any sort of toughness. Quite the contrary, I was terrified of the drugs they were giving me and what they were doing to me. After years with this, I can now see, it was the lack of knowledge of the type of drugs, the administering of them by "hack" doctors, and my eventual mistrust for them.
I had been consistantly a 3 month episodic clusterhead for the past 5 years, this year I'm well into my 5th month with no end in sight, kinda scary.
Any ideas on the oxygen?
Thanks,
Dave
PFDAN's