I'm a long time CH sufferer and today's my first day with the Oxygen.  I'm in a cluster right now.  The 'dark side' has been visiting me about 3 times a day for a couple of weeks now, it's been brutal.  The imitrex is making me sick and I've used up my insurance for this month so now it's really expensive.  My Dr. put me on Verapamil starting today and the Oxygen arrived last night.  I don't know how my Doc got that approved.  I need a better mask according to this website, so I'll try to get that tomorrow.  Worst part is the 3am wake up.  All alone at 3am in utter misery, in pain and throwing up.  Each nite's an adventure right now.  I get kind of mad at it, and it doesn't scare me anymore.  Until I found this website yesterday, I've been pretty alone in all this.  Hopefully the O2 will work tonite.  Good luck to all and to all a good nite.

Ouch, sorry to hear about that, that does sound brutal.

I've seen some O2 enthusiasts on here talk about just putting the tube in the mouth and inhaling. That pretty much sounds like a non rebreather to me.

You've probably also noticed that a hi LPM flow can be critical for some of us too.

Assuming you have a standard issue regulator that maybe goes to 15 LPM if you're really lucky, I guess you'll want to crank 'er all the way up if you haven't tried that already and if it hasn't been working for you so far.

What form of imitrex are you taking? There's a bit of a consensus here that the pill form is a joke for CH, but the injectible tends to be very effective.

This link is a must read/must do if you have (or get) injectible imitrex since it will make it much less expensive, you'll have more doses at your disposal, and it will be less likely to cause side effects:

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You may want read up on Melatonin for nighttime hits. 9-12 mg have been helpful for quite a few here.

The thing about non-rebreather mask is you want a mask that won't let in outside air. So if your mask has the holes in it, tape them closed and then breathe pure oxygen. You need to get on it quickly at the onset of CH. THat means you carry the tank with you in the car, to work, etc.

Many also find relief with the "shadows" of CH by drinking a redbull. My husband does this rather quickly, I take it to him when I see him break out the tank.

The verapamil should ramp up to work as a preventative, but will likely take a couple weeks. You might want to mention your dosage of this, and read up on what others here have stated they take. My husband takes lithium. Others take both.

Glad you found us, stick around and let us know how your treatment goes.

Christy

I have interesting results with melatonin.  1mg at bedtime is effectively muffling the beast at present for me.  When I stepped up to 3mg it was LESS effective.

djphrenzy wrote on May 30^th, 2010 at 5:58pm:

I have interesting results with melatonin.  1mg at bedtime is effectively muffling the beast at present for me.  When I stepped up to 3mg it was LESS effective.

Exactly.  THAT'S why it's important to start with low dosages and work your way up if necessary.  Overdoing it may be less effective.

That being said, the normal effective dose for me while in cycle is 9 mg.  Last time, however, I had to work my way up to 15 before it had any effect whatsoever. 

Just guessing here, but I suspect that there's some variation in low melatonin levels during different cycles--even in individuals.

Best,

George

I am on oxygen for the first time and it has been a God-send.  Definitely check out the link for the oxygen info.  I was doing it all wrong until getting the tips here.  A non-rebreather mask and cranking the flow up high (mine is rated to 15 lpm, but cranked all the way up it seems to go a bit past that).  10-15 minutes has really been the tonic, but I keep on it for another 5 minues or so after the lightning stops.

Still waiting for the verapamil to do it's thing after 2 weeks.  Started at 240 mgs a day; up to 480 now along with prednisone (blood pressure still up despite the dose; must be the pretty constant attacks and phantoms).  Trying melatonin on the recommendation of some here.  Took 5 mgs day before yesterday, 10 last night.  My pattern has changed a lot in the past day.  Four attacks last night, staring an hour earlier than usual, and spaced a couple hours apart.  Started the day with an attack at 5:30, a first for me.  We'll see how it goes tonight.  Good luck and stay with the O2.

o2 is the stuff!!!!!!!! I should have had it 7 years ago