Ideas for EXACTLY what to ask a doctor to write for an O2 prescription?

[Bejeeber]

Here on a Sunday I'm requesting an O2 prescription via my online "patient portal" with my GP doctor's medical group, in hopes of them seeing the request first thing Monday morning, and my being able to fill it on Monday.

 

I had asked the doctor for a prescription weeks ago when I suspected a cycle could be starting up, and now that I know one is indeed getting in gear, I've learned no prescription was called in. Maybe because as a GP he'll have no experience with CH and not know what to write.

 

So I think I'll offer an example of exactly what he could write, and although maybe I should be an activist about educating him on high flow 100% O2 just in case he ever encounters another CH patient, I'm a little more about the most pragmatic way to ensure he'll write a prescription at all right now. It has been my habit in the past to work the system by getting whatever sort of prescription, then yanking the whimpy low flow regulator off the M tanks delivered from Apria and throwing out their joke of a rebreather mask practically before the door even hits them on the way out, while fastening my hot rod high flow regulator on there in order to get down to some real business.

 

So who here knows exactly what a GP would be likely to automatically and unquestioningly agree to write for a CH O2 prescription (that I could then do my own thing with)?

 

Welding O2 will be my backup plan, and I'll be seeing if per chance there is a local headache specialist that doesn't engage in the standard and grossly negligent practice of making CH patients wait for months for an appointment. Also I'm busting, on the D3 regimen with benadryl, know about all the pharma, blah blah.

[ChrisSelf]

I can't really help because my doctor gave it to me at 6lpm and said anything more is a waste.

When I told him about high flow oxygen, he informed me that you can't actually use all that oxygen. I went out and got myself a high flow regulator and the recommended mask.

[CHfather]

I've been working some on this language recently, for a brochure.  I can't be 100% definitive, but this is what I have been told so far about how the prescription should read:

"Oxygen therapy for cluster headache. Up to 25 min of 15L/min with non-rebreather mask."  

In both cases there, the "min" is minutes.  What we have heard so far is that requesting a higher-flow regulator is going to get resistance from insurance companies and/or providers. Size and number of tanks is between you and the provider.

 

There's a recent study showing that demand valve and "O2ptimask" (now called the "Cluster O2 Kit") are more effective than a standard non-rebreather mask, but not so dramatically that it's likely to change the protocol.  If you want to show it to your doc to give it a try, it';s here: http://www.docguide.com/oxygen-therapy-cluster-headache-mask-comparison-trial-single-blinded-placebo-controlled-crossover-st?tsid=5

[Bejeeber]

Ooh that's some good, expert info, and nicely specific, thanks CHf. 

[razorPP]

My o2 prescription is for 6 lpm, you can exchange or buy a valve that goes to 15 lpm,  I think 6 lpm may be all the doctor is going to write script for. When I changed o2 supply companies last year and I had to get another script for them, it was 6 lpm. The 02 store does not care how many tanks I get or if I have a 15 lpm valve.

[Bejeeber]

I hear ya Razor, I've pretty much always pretended to go along with some lame arse low flow rebreather prescription just in order to get my paws on some o2.

 

I did encounter an issue with Apria last time though - some busy body   gal there called me up when I was in high cycle and she went right into interrogation mode on why I was using lotsa O2, at which point I instantly found myself LYING about my doctor approving it, at which point she started talking about needing an updated prescription. It was dicey. 

 

This time the doc said OK to a 15 LPM, non-rebreather prescription, and the result was the O2 supplier holding the O2 hostage an extra day, while they tried to figure out whether a 15 LPM regulator exists. Nobody really wants to go an extra day without O2, right? Well they did eventually show up with the 15 regulator, and a......canula.... .

[spiny]

Hahaha!! So efficient with that canula right Jeebs? Do you still have that Demand Mask?

[Bejeeber]

Hi Spiny, what I have is a Flotec regulator that goes up to...I think 65 LPM(!) and an on old non-rebreather "ClusterMasx" which is retrofitted with a 33 gallon redneck reservoir bag.   Haven't been able to use the Flotec yet since the O2 people won't be delivering the right tanks (M) until later today. So far they've only been able to show up with E tanks, which of course my regulator no workee with.

 

I tell ya, if this cycle keeps trucking (which I'm still hoping it won't) I seriously may put money where my mouth has been for so many years and spring for one of those snazzy Demand Masks!

[CHfather]

I'm glad you're getting your M tank today, Jeebs.  Good Lord, why does it have to be such a nightmare!  Are you keeping those E tanks they're bringing you? 

Problem with the demand valve system is that you can, in general, only get it by prescription.  Sometimes they appear on eBay. There's nothing there now that is obviously a demand valve system -- there is this, http://www.ebay.com/itm/LSP-Resuscitator-EMT-Demand-Valve-Rhino-Regulator-Aspirator-Mask-O2-Hoses-New-/391356603889?hash=item5b1eabddf1:g:WtcAAOSwvgdW5tpt, but I can't tell exactly what it is.  If you're interested, you might post the question over at FB, since I see that 8 of them have been sold and I wouldn't be surprised if at least one of the was to someone there. 

 

I would think that with your Flotec and your redneck bag, you ought to be getting plenty . . . but maybe not???  (I remember at a conference our friend Tingeling (a tiny little gal) demonstrated that she could suck down 65lpm in no time and have to wait for a normal reservoir bag to fill, so I know some people have that kind of lung capacity.) 

 

I snagged a demand valve for my daughter a while back, and she loves it mostly for the mask, which is very soft and comfortable.  But if you're getting enough flow from your current system, a demand valve really isn't necessary.

 

Anyway, I hope all of this is moot soon and your San Pedro busting works.

[Bejeeber]

Thank you for the up to date insights CHf, I wasn't remembering about the demand valve prescription thing.

 

I do get plenty with the Flotec, but I also burn through tanks like a futhermucker, so I think of the demand valve as a way to help conserve O2 supply, cutting down on the frequency of O2 deliveries required.....ya think that is a realistic assumption, or is this just me engaging in my wishful wishing again? 

[CHfather]

I've never quite understood the idea that a demand valve will conserve O2 . . . but I'm not saying that I'm not missing something.  In my mind, it's not like your high-flow, big-bag system is spewing O2 all over the place -- you're sucking it all down, and it's either in your lungs or waiting for you in the bag.  So I feel like if you need that high flow and big bag to breathe the most effective way for you, you're going to be hitting the button on the demand valve pretty often and sucking down as much O2 as you now do.  Someone who knows more than I do -- RACER, maybe, but probably someone else -- said that same thing, and it makes sense to me.

 

However . . . on that youtube video I sometimes post about assembling and using the O2ptimask, the guy (Michael Arnold) says that even at 25 lpm, O2 is definitely leaking out of the back of the tube thingy (at about 5:40 here:

).  It's probably worse with your earlier version of the mask, and I don't know whether the new version, the "ClusterO2 Kit," has better engineering to reduce that.

 

Can't beat the demand valve for simplicity, for sure. No regulator fiddling, no bag concerns, just O2 when you want it, which is at least a small plus during an attack.

[sierra]

Hey, finally a discussion I think I can add something to. I am no oxy expert but I am a hell of a technician with anything mechanical.

 

You have to keep in mind that 'flow' is a combination of orifice size and pressure(psi).  The bag on these masks is nothing more than a temporary reservoir. If the bag is not completely exhausted after you inhale deeply it is big enough, if it fully re inflates while you are exhaling, your flow is probably adequate for your lung capacity.  That 22 gal. bag may look cool but I don't think it's helping anything.

 

The one way valve in the mask is a simple one that lets the oxy out and keeps your exhale from going in, but it is also a very primitive one that must blow-off at a predetermined psi so the bag doesn't explode, plus they all leak a little.

 

So, while you are exhaling or holding your breath all that noise you hear is a combination of oxy flowing into the bag AND escaping past the blow-off.

 

In my opinion, a demand valve is the way to go.....it will conserve oxy and not waste it, plus the flow rate will be a lot steadier without the bag.

 

Ha, all this from a wise guy with a welding tank and regulator.......