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Cluster Headache Help and Support >> Cluster Headache Specific >> O2 Users....Do you own your high flow regulator???
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Message started by hhsams on Sep 11th, 2010 at 5:21pm

Title: O2 Users....Do you own your high flow regulator???
Post by hhsams on Sep 11th, 2010 at 5:21pm
Ughhh!! My husband has just started a new cycle today after a year break... got to start the morning off with a Imitrex shot.... so frustrating, we are always hoping that the cycles won't come back!!

Anyway, my question is..... for those of you who use O2, do you own your high flow regulator or do you get the whole set up from the Oxygen company each time your cycle starts? Since its been over a year since he's had a CH & we turned our stuff back in to them in Feb.... big mistake, now they want to charge us $200 for a "set up" fee for new tanks, regulator & cart. What I'm wondering is maybe I should buy my own high flow regulator to keep and just get tanks only from them.... does anyone else do that?? Don't even know if they will let me do that... will have to wait til Monday to find out.

The other thing is that the O2 company only has a few high flow regulators and i'm always nervous they won't be able to locate one when we need it.

Any advice on this would be very appreciated..... we really need to get the cost of this under control.... the cost of Imitrex shots are enough to deal with!!

Thanks so much,
Holly

P.S. If you think I should buy a regulator which one do you recommend? Do you need a prescription to buy one?

Title: Re: O2 Users....Do you own your high flow regulator???
Post by his wife on Sep 11th, 2010 at 5:51pm
hhsams, sorry your husband is experiencing a cycle.  Wife-to-Wife I know what it's like to try to take care of things like meds and the like.  I've learned here that Marc is the oxygen guru of this bunch and he's helped me understand the different O2 stuff.  Go back to the medicines, therapies, etc..thread and read his "my favorite 02 regulator" post.  You will learn alot!  I just purchased the O2timask offered thru this website and a welding regulator for his large M medical tank, no prescription needed.  We keep his tank filled year round so we don't turn it back in, never know when a cycle will hit.  I know what you mean about the cost of the trex shots...that's if you're lucky enough to have an insurance company that will let you have more than a couple each month!  Good luck to you and keep the faith!

Title: Re: O2 Users....Do you own your high flow regulator???
Post by Racer1_NC on Sep 11th, 2010 at 6:14pm
Yes, I own several and only rent the tanks.

For a post type hook up try these guys:
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Title: Re: O2 Users....Do you own your high flow regulator???
Post by bejeeber on Sep 11th, 2010 at 7:51pm
Hi hhsams,

It's pretty standard procedure to own your own regulator alright, and IMO the O2 supplier doesn't need to know about it. When they drop off my tanks I say thanks (as if I'm really going to use the POS 8 LPM regulators they have on there), and practically before the door has closed behind them I'm yanking their regulator off and putting my nice high LPM regulator on. 8-)

I suppose you're already aware of the imitrex tip that enables you to stretch to imitrex injection doses 2 to 3 times farther? START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Title: Re: O2 Users....Do you own your high flow regulator???
Post by Brew on Sep 11th, 2010 at 8:12pm
Well, I don't "own" it - a cluster angel gave it to me.

Title: Re: O2 Users....Do you own your high flow regulator???
Post by Callico on Sep 12th, 2010 at 12:16am
I'm with Brew on this.  He's not the prettiest angel you ever saw, but he is one! :D

If you have trouble with the O2 supplier go out and buy a welding tank and your own regulator and bypass them totally.  Some of these suppliers make me sick gouging the people that need their services the most.

While you are in process getting the oxygen click on the CH.com store button in yellow on the left and order an O2ptimask.  It will probably beat the oxygen getting to you and will make a tremendous difference to your husband in using the O2.

Jerry

Title: Re: O2 Users....Do you own your high flow regulator???
Post by Batch on Sep 12th, 2010 at 1:42am
hhsams,

As a 25 liter/minute regulator is the fastest you'll be able to get from a home oxygen supplier, the simplest thing to do if you want higher flow rates is buy your own high flow regulator. 

Racer gave you a good link for a CGA-870 Yoke type pin-indexed regulator for the smaller portable E-size oxygen cylinders.  However, if your husband is having 3 or more CH a day, you're money ahead ordering the larger fixed M-sized oxygen cylinders or larger as the M-size cylinders hold enough oxygen for 20 to 30 aborts at flow rates of 25 liters/minute or more.

The higher flow rates that support hyperventilation result in much faster aborts so even though your husband may be using higher flow rates to abort his CH, he's not necessarily using more oxygen.

The larger M/H/K size cylinders have a CGA-540 cylinder fill fitting so will require a CGA-540 regulator.  You can get one of the best 0 to 60 liter/minute regulators from Flotec Inc.  They make two series regulators with this flow range.  The less expensive series goes for around $140 and their top of the line InGage™ series goes for $190.  I have two of the InGage™ series regulators and love them.  See the photo below of my oxygen therapy kit:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

As you can see I use the $27.50 O2PTIMASK™ kit from the CH.com store at the left and also a demand valve.  Both methods work equally well with the fastest aborts possible.

Take care,

V/R, Batch

Title: Re: O2 Users....Do you own your high flow regulator???
Post by Bob P on Sep 13th, 2010 at 8:08am
Own one that goes to 30 lpm.  Bought it on E-bay.

Title: Re: O2 Users....Do you own your high flow regulator???
Post by Agostino Leyre on Sep 13th, 2010 at 9:01am

Racer1_NC wrote on Sep 11th, 2010 at 6:14pm:
Yes, I own several and only rent the tanks.

For a post type hook up try these guys:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Really, I went ahead and bought my tanks, I figured I would need them for a few more years at least. lol.

Title: Re: O2 Users....Do you own your high flow regulator???
Post by Chad on Sep 13th, 2010 at 10:04am
I definitely would get your own reg. and mask.  Doctors can write on the script what flow rate they require, but if you have your own equipment other than the tank, you can increase the flow rate to your desire.  My O2 supplier simply supplies my tanks and they don't ask any questions.
My reg. is only a 0-15 LPM reg and 15 LPM works just fine for me, but for some that is too little.  If I see it doesn't work in future cycles, i'll just get online and buy one that goes 25 LPM plus.  You can buy the mask set up on the left of your screen (CH.com store).
The reg you can see others gave you good links already.  That firehousemedical is the best price I've seen yet.  Ebay would be my next choice.

Title: Re: O2 Users....Do you own your high flow regulator???
Post by Guiseppi on Sep 13th, 2010 at 10:35am
If you have the disposable income...check out the demand regulators. They can be pricey but they work great...as no matter how hard you draw...you will never max out the draw.

I also have 2 back up 25 LPM regulators I've picked up off the internet. Scared to death of not having 02 when i need it... ;)

Joe

Title: Re: O2 Users....Do you own your high flow regulator???
Post by DennisM1045 on Sep 14th, 2010 at 10:37am
When I first got O2, my supplier provided two 15lpm regulators.  One for my 8 e-tanks and one for my m-tank. 

I felt like I was suffocating trying to slow down my breathing to the 15lpm rate.  I knew I'd have better results with a higher flow rate.  So about a year later a cluster Angel sent me a 25lpm e-tank regulator and it really improved things.

Last month I finally upgraded my m-tank regulator to a welding regulator bought off e-bay for $42 shipped.  That thing is amazing.  Abort times are down to 5 minutes now.

If you can find the cash, buy what you need.  Just don't let your DME see you using it.  They may give you trouble. 

Remember, you don't have to flow O2 at the highest rates.  Just find the rate that works for you.  It's a very individual thing.

Good luck...

-Dennis-

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