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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> OXYGEN! OXYGEN! OXYGEN!
        
(Message started by: smartypants on Aug 31^st, 2006, 10:02am)

Title: OXYGEN! OXYGEN! OXYGEN!
Post by smartypants on Aug 31^st, 2006, 10:02am

I noticed one of the surveys that a large majority of us sufferers have never tried the Oxygen route. I'm wondering why?

Last year I entered probably my ninth cluster onset and I read about trying Oxygen from this website. Let me just tell you, it is a WHOLE different ball game now. I have 4 tanks sitting at my house year-round. (BTW buy the tanks and the regulators, if you can. For the same price as renting for two months, you can purchase them.) Oxygen tanks (at least here in Albuquerque, NM and also in Green Bay, WI) are only $12, but the regulator will be around $100. Of course you only need to buy the regulator once.

It's amazing. For me, at least, it keeps me from hyperventilating and passing out. ALSO, and most importantly, it SPEEDS UP THE HEADACHE AND MAKES IT MUCH MORE BEARABLE. What would normally be an hour and 1/2 becomes 15 minutes.

One note: my doctor told me to regulate it at 2LPM. That did nothing. You have to crank it. If your regulator only goes up to 8, that'll help a lot. But if you can get one that goes 12-15, all the better. Be sure to use a Rebreather (--sorry, typo. make sure it's a Non-Rebreather mask. thanks, brewcrew!) mask, though. Very important. and the earlier you catch the headache, the better. It works best if you just crank it the second you feel the twinge.
I just lay on the ground with my tank.

Anyway, I just really needed to share that because it's the only thing that's worked for me. I know it won't work for everyone, but you'll never know until you try. It kills me to know at least some of you could be finding some relief like I am, but just haven't tried this route.

Please feel free to contact me. (Esp. if you are in ABQ and need to find a doc who will prescribe Oxygen to cluster sufferers.)

:)
tami
tabts0454@yahoo.com

Title: Re: OXYGEN! OXYGEN! OXYGEN!
Post by Guiseppi on Aug 31^st, 2006, 10:16am

Couldn't agree with you more. I modified an old paramedic demand regualtor which pretty much operates like a SCUBA regulator, delivers pure 02 as I inhale. Th e tank is either in my bedroom or in the trunk of my car. Fast, cheap, effective and no real side effects.

Guiseppi

Title: Re: OXYGEN! OXYGEN! OXYGEN!
Post by Melissa on Aug 31^st, 2006, 11:15am

;;D Tami is correct. Everyone should at LEAST try O2 once if not twice!

If you look to the links over there <---- there is one called "oxygen info". Click on it and learn more.

Glad it's working for you Tami!

:)mel

Title: Re: OXYGEN! OXYGEN! OXYGEN!
Post by brewcrew on Aug 31^st, 2006, 1:24pm

One correction: You should use a NON-Rebreather mask. That way you're getting a fresh shot of pure O2 each and every time.

Title: Re: OXYGEN! OXYGEN! OXYGEN!
Post by DavidEH on Aug 31^st, 2006, 3:08pm

just got the oxygen two nights ago....

Unforunatly I need to get the mask, but out of 3 hits I had yesterday, it helped with 2.... I have the level at 8 (thats what the prescription is for, but luckily it can go to 12 and 15, shhhhhh ;) )..

In order to compensate for not having the mask, I just put a plastic bag over my nose over my nose and tubes (and breath through the tubes) and exhale through my mouth...

The oxygen company even called and gave me a survey about how successful it has been.

Pricey copay, but I think its worth it... (pricey compared to my pill copay, around 38 dollars versus 5/10 for pills,)....

Title: Re: OXYGEN! OXYGEN! OXYGEN!
Post by Jonny on Aug 31^st, 2006, 7:15pm

on 08/31/06 at 10:02:44, smartypants wrote:

Please feel free to contact me. (Esp. if you are in ABQ and need to find a doc who will prescribe Oxygen to cluster sufferers.)

You really dont need a script for 02 ;) (At least the way I get it ;;D )

Title: Re: OXYGEN! OXYGEN! OXYGEN!
Post by smartypants on Sep 1^st, 2006, 9:14am

How do you get your oxygen?? :) Maybe I only needed a script to have my insurance pay for it. It'd be great to know I could just omit the whole doc thing in the future.

Title: Re: OXYGEN! OXYGEN! OXYGEN!
Post by Guiseppi on Sep 3^rd, 2006, 5:15pm

Jonny's talking about using welding 02. It's the same quality as medical oxygen, just requires a modified regulator.

Guiseppi

Title: Re: OXYGEN! OXYGEN! OXYGEN!
Post by Katherinecm on Sep 3^rd, 2006, 6:27pm

Maybe the reason the survey says so few people have tried oxygen is that many people take the survey when they first show up- I know I did- I was still lurking and had hardly tried anything yet.

Title: Re: OXYGEN! OXYGEN! OXYGEN!
Post by BB on Sep 4^th, 2006, 2:41am

Is there any particular way to breath with the 02? Like in only through the nose and out through the mouth? and how deep or how quickly should one breathe it in?

Thanks

Annette

Title: Re: OXYGEN! OXYGEN! OXYGEN!
Post by TxBasslady on Sep 4^th, 2006, 3:09am

I've had 02 since last December. The next best thing I did was purchase a Clustermasx from Ben.

This 02 mask is the cream of the crop. In Wisconsin this past July, Ben was there and I purchased a 2nd mask.

Ben gave me about a 15 min. lesson and showed me a couple things I didn't know.

#1...with the larger bag attached to the mask, you can start out with 12-15 lpm. However, once the bag is inflated...you can reduce the regulator to 5-6 lpm, and still maintain a full bag of 02. This saves a bunch on your 02.

#2...Ben advised me when I get hit, and start the 02...to breathe normal. This is what makes #1 possible. The point is NOT to empty the bag. Now this may be difficult for some...cause I know I used to grab that mask...and inhale like I was hyperventilating. I tried Ben's way....and I must say it truly works.

Another thing Ben taught me....while on the 02, sit up as straight as possible. This allows the 02 a direct straight path to the lungs and body. If we slump...or lie down...it causes the 02 to have to make a jog and therefore no straight clear path is possible. This makes sense...and it allows the 02 to do it's job in alot less time.

I know we all have our own ways and habits...but this advice from Ben really has made a big difference for me, not to mention the amount of 02 I've saved by controlling my breathing during a hit.

Jean