Hello all can i first say what a bittersweet find your website is knowing am not the only one who suffers from this beast as u call it.ive suffered for 16yrs on/off and in my 1st cycle for 5yrs upto 10 a day which has 2 a grande finales at 7pm and 1am lasting till 5amish.anyway my question is am seeing my dr tomorrow and and i feel reading your posts that o2 with redbull sounds like a great abortive rather than the usual pills which take to long to work even taken at 1st sign of "shadows".how do i bring this alternative EXPENSIVE treatment up to be described?.ps am exhausted as been a week so please excuse bad grammar!.thanks

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

Print out what you think you might need to show your doc.  A lot of people here have problems getting O2 prescribed.  15lpm seems to be the magic number.  My doctor friend says she wouldn't use that much on anyone because the body can't absorb it.  So have a rebuttal and get what works.  I personally haven't been through that but I have read about it a billion times on this site, so be prepared. :o (and a googly eye guy to you for luck!)

--Shaggy

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. 

O2 is not an alternative treatment but the most effective abortive and treatment of choice for very many here. It equally, once broken down, is not expensive compared to its chemical alternatives.

There is detailed instructions on how to get O2 scripted on the "oxygen info" tab on the left.

If your doc won't prescribe, find someone who will. If all else fails:

Non-Rebreather Mask (CH.com) = $30
O2 / Tank (Welders Shop) = $50
Regulator (eBay) = $30

Aborted Attack in 5 min = priceless

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

LOL can i first say i hadn't realized how bad my grammar was in that post!...though in my defence the beast sure had its wicked way with me then spat me out! just before i posted.Anyway was a normal doc who more aless sneered at my inquires into o2 and he knew best. was prescribed beta blockers(proprananol? (not with me)) one a day,and tramadol to take with paracetamol.Has defo stopped the kip scale 8s and above but still get em Especially when in from work and sat down or stop working and sit at work,does anyone know why this occurs...am guessing something to do with heartrate.ps thanks for your rather pleasing as if u really do give a flying f... replys. :)

Well believe it or not......most of us really do give a flying F.... ;D ;D 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