Read the o2 link. Know it inside out. The odds are you will be educating your MD..as well as yourself.

Is this Doc a Headache specialist? If not best you find yourself one.

Good luck

Iddy

Welcome! I also am a newbie here but a long-time sufferer, 23 years of episodic and the past 3 chronic. You must find a way to get O2, and do read the article at the left printing out the relevant portions (especially the research) to show your Dr. If your doctor is not a headache specialist, is he/she a neuro? I found my neuro was more sympathetic. You also need to explore both preventatives and abortives, and maybe transitionals. Many seem to find verapamil plus some other preventative works well, along with abortives like O2, sumatriptan, dihydroergotamine (or other ergots) and prednisone taper as an effective transitional. Read all of the articles on research and responses to them. I am not a doctor, just someone who has tried about everything except baying at the moon-hmmm, might try that.

My insurance wouldn't pay for oxygen for many years so I payed out of pocket. The E-tanks were $4.25 a month to rent, and cost $12 each refill. Using a demand type valve I averaged 5-7 aborts a tank. Compared to almost every other abortive, that's dirt cheap.

The biggest step for me was recognizing how critical a long term approach to treatment was. When a cycle stopped, I stopped thinking about it. When a cycle started, I'd go back to my GP for more fiorinal, vicodain, none of which really worked but dulled the hits enough to get me screaming through another cycle.

Now I do the prednisone taper at the start of a cycle while ramping up my prevent, lithium. For break thru attacks I use my oxygen and energy drinks, (Sugar Free Red Bull is my current favorite.) I'm sure some of this is my age, just turned 50 and for some CH mellows a bit with age, but my wife and I can't recall when I had my last legitimate KIP 10 hit.

Really Really push for oxygen, if it's refused politely tell him he is no longer your physician and find one who will prescribe it. It's an absolute deal breaker for who's gonna be your doc!

Joe

Well believe it or not......most of us really do give a flying F.... Been there where you are now, and whole heartedly agree that it sucks!

The headaches you are describing are often referred to as "let down attacks." There are those on the board who try to stay up and tense as much as they can, because as soon as they start to relax, BAM, they get hit.

Your doc's treatment shows he is not educated on CH. Not saying he's a dumb doc, just does not know much about what is a rare condition. If he is not open to suggestions you bring him, then it's time to go shopping for a neuro who specializes in headaches, or at the very least, a GP who will listen to what you say about CH.

I'm (hopefully) at the tail end of a 5 month cycle. I've only had to resort to imitrex once, oxygen has handled most of the other attacks. It's cheap, fast, and leaves no unpleasant side affects. A doc who won't give you 02 is depriving you of an incredibly effective weapon.

Good luck in your doc hunt!

Joe