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

OMG! Right after I clicked post the driver called and said he'd be here in about 15-20 minutes with the concentrator. OMG!!! I'm so excited!!!  :D :D :D

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

im with Joe on this one. Give it hell though. You need pure 100% good flow 02.

Best,   Coach Bill

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.

Thanks for the replies guys. Of course I wish none of us had ch, but it's somehow comforting knowing that there are others who REALLY KNOW what I'm dealing with right now. I try very hard to keep my ch away from everyone. My fiance of 8 years has seen one K8+ and my 10yo daughter has seen none. My mom is really the only person that I allow to see me getting hit, but she's been helping me through this since I was a kid.

I already read the page about concentrators on here and I'm not holding my breath. Still, it's here so I may as well give it a go. Who knows, maybe I'll be one of the few who can get relief with one. Worst case I'll just have to wait a few more days for the real deal. I am kinda bummed that they only provided a standard mask though. I was pretty stoked to give it a go when I get hit tonight. I'm going to try to find one locally tomorrow since I'll need one either way. I just don't understand why my insurance company is able to change my doc's orders. He was very clear on the 15lpm and the non-rebreather mask. Glad this isn't life or death. I'd be prescribed X amount of this and get Y amount of that. I honestly think I hate insurance companies more than the beast himself.

-Thomas

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

Hey Thomas,

I had a cluster a few years ago that lasted 9 months.  My main med to chase the beast away is Verapamil.  Well, it didn't work for that cluster.  I tried everything that year and several does of predisone.  After gaining 15 pounds!  Love meds that do that to you!  Anyway, then my neoro did Verapamil and Depakote together and O2 and it worked!  I am praying that it works for you.  Good luck and let us know how it goes.

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! :)

Quote:

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.

I believe Thomas was saying cold is bad, heat is good. And as to O2 being cold out of the tank, yes, it is. Many, though not you, find this to be a plus, but you prefer heat as do many others. Still, I would think with a large enough reservoir bag, like 3 liters, the O2 would warm up enough. I know I tend to suck those bags dry and empty though with each breath. Still, if the device you're given doesn't work for you, try the really large bags with a non-rebreather. Blessings! lance

Quote:

I believe Thomas was saying cold is bad, heat is good. And as to O2 being cold out of the tank, yes, it is. Many, though not you, find this to be a plus, but you prefer heat as do many others. Still, I would think with a large enough reservoir bag, like 3 liters, the O2 would warm up enough. I know I tend to suck those bags dry and empty though with each breath. Still, if the device you're given doesn't work for you, try the really large bags with a non-rebreather. Blessings! lance

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.