Hi Everybody,
Don't think I've posted on here in years. My last 3 cycles have been very short and mild. The last one was a total of 3 headaches, with a 5 or 6 being the worse. Had my doc call in a strong pred taper and it was over. Sadly, the beast seems to be making up for the last few years this time around. It's been going on 3 months of 3-4 8-10's a day. The beast laughed at the pred/verapamil cocktail and never missed a step. Pred has NEVER failed to at least give me a temporary break while on 40mg+, but not this time. My personal worse has been met and exceeded several times this cycle.

I finally got to the end of my rope last Friday after almost a 48hr break, thinking it was over -- then wham! Back to 3-4 a day. Called my doc and they got me in for an emergency appointment. We're going to try adding depakote to the verapamil and I am finally, after 16 years, trying O2. The doc prescribed 15/lpm, but my insurance wants to try a 10lpm concentrator first. From what I understand O2 from a tank is cold, whereas from a concentrator it's room temp. That's actually a plus for me as cold makes my CH worse. Heat has always been one of the main tools I use to fight the beast.

Anyhow, this cycle is really wearing me down. I just wanted to whine to someone who could really understand. I'm really excited about trying the O2 also. Did I mention that I'm sitting here waiting for it to be delivered! I pray to god this works. If you happen to pray, please do it too!

-Thomas

Hoping it works for you, historically the 02 concentrators do not work. They start out at too low an oxygen percentage to help, and even at their peak my understanding is they don't get much over 90%. For 02 to work you need to get 100% pure 02 to your lungs, no outside air, no exhaled air. That's why we recommend a non rebreather mask, a high flow regulator of at least 15 LPM, preferably 25 LPM, and you need to get on it as soon as you feel the beast dig in. Using this system my aborts run about 6-8 minutes, that's getting completely pain free.

Hoping you get some relief but I have my doubts. Let us know how it goes.

Joe

I think I remember one person saying that a concentrator actually worked for them, but that's one out of a whole lot so I fear the chances are slim.....

My god your insurance people are total a-holes insisting on a concentrator. I hope you (and your doctor) can dissuade them from that real quick - assuming it doesn't work for you.

There are some who can abort at levels as low as 7 LPM, crossing my fingers your one of them! If they gave you a re breather mask, just tape the holes shut, pull the mask away from your face as you exhale, will work almost as well as a non re breather mask.

JOe

there is a hint from old board for getting cold the concentrator air

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if i understand well you just apply ice on the bubbler(disposable humidifier)

pls update if you wish!

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his words were clear but a tip is always a tip no matter if one chooses to use it or not.And since we are all different i find heat and cold to have a different aspect on how i use them.A hot shower for me has nothing to do with a cold energy drink for example.different uses completely and both could help in a crisis(other times i use completely different things like creams which cool off skin as i pass from shivering to feel warmed up and vise versa).

in few words a tip is always a tip no matter if one chooses to use it or not.he ll be the judge of it  of course according to his needs.