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        Cluster Headache Help and Support >> Cluster Headache Specific >> Oxygen - What's the DEAL!! Update!
        
(Message started by: LindsayLoo on Jun 4^th, 2007, 7:27pm)

Title: Oxygen - What's the DEAL!! Update!
Post by LindsayLoo on Jun 4^th, 2007, 7:27pm

What a day so far! Ok, so here's my annoying little issue, it is pretty frustrating but then again I'd take frustration over these CH's. I have been on the phone back and forth since 10:00am with the neurologist's nurse, my Jackarse of a PCP's nurse and so forth...I have yet to meet the neurologist but is very aware of me and my CH's so he is trying to get me in on his lunch break sometime this week, he I guess, speacializes in headaches (Thank God for that) but until he meets me he doesn't really want to do much, his advice go back to the E.R. where he will leave a note stating to give me 02 or if narcotics, as a last resort per my request or call my my PCP (who his words of were "a bitter, cold woman") So I call my PCP office and told her i had to return to the ER AGAIN asked what to do basically, for more Relpax and to see if she would get me my o2, the nurse said 1) Dr. so and so said to see a neurologist (Duh! You think!) 2) "there is NO WAY she will give you o2" and 3) my insurance doesn't cover Relpax or Imitrex auto injects. She gave me samples of it before, why not again??!! Here's my question...WTF is the big deal about o2?? Why the hell am I having such a hard time getting the damn thing!! Argh!! IT'S OXYGEN for goodness sake, what the hell does my PCP care, what cause it's flammable, why should she care if I accidently blow my house up. Jeez! I swear if it isn't the Ch's that'll kill me it's my PCP's ignorance to CH's.

Title: Re: Oxygen - What's the DEAL!!
Post by JayMoe on Jun 4^th, 2007, 7:36pm

I feel your frustration......there are several doctors out there who are ignorant to CH....I have met several of them as well. :) Take some deep breaths. I will be thinking of you.
JayMoe

Title: Re: Oxygen - What's the DEAL!!
Post by Brewcrew on Jun 4^th, 2007, 8:23pm

Answer: New Doctor.

Title: Re: Oxygen - What's the DEAL!!
Post by Jonny on Jun 4^th, 2007, 8:24pm

on 06/04/07 at 20:23:09, Brewcrew wrote:

Answer: New Doctor.

DITTO!!!!

Title: Re: Oxygen - What's the DEAL!!
Post by chewy on Jun 4^th, 2007, 8:40pm

New Doc with a quickness.

Title: Re: Oxygen - What's the DEAL!!
Post by Phil L on Jun 4^th, 2007, 9:15pm

Get rid of Dr Turkey and start anew.

Title: Re: Oxygen - What's the DEAL!!
Post by Guiseppi on Jun 4^th, 2007, 9:30pm

If you have any friends with oxy acetelyne welding rigs, it's the same oxygen as they put in the fancy medical tanks. Just take straight hits off of the hose.

I agree it's very frustrating with doctors who will hand out schedule II, highly addictive narcotics like they were M&M's, then get all wigged out when you ask them for oxygen cuz it might be flammable!!!!! You need to get thru those damned nurses and see if this neuro is open to oxygen, if he's not then he is CLUELESS about CH and you will have to move on. Good luck, don't give up once you get thru this first stage the management stage is much easier and we'll all stay here to help!

Guiseppi

Title: Re: Oxygen - What's the DEAL!!
Post by Skyhawk5 on Jun 4^th, 2007, 10:15pm

There's a common misunderstanding that oxygen is a flamable gas. This in not so. Oxygen by itself is a non-flamable gas. It will feed a fire of something flamable but does not burn by itself. And it is not a bomb waiting to blow you up.

The most danger I can think of is if while using, for some reason your shirt or sweater becomes saturated and you light a cigg or what ever before it has time to disapate. I spoke to a person that claimed it happened to them. Silly thing to do if you ask me. A spark would still have to land on the saturated area for a fire.

I think many Doc's think we will blow ourselves up because they need to read about Oxygen.

Best of Luck, Skyhawk5

Title: Re: Oxygen - What's the DEAL!!
Post by GrandPotentate on Jun 4^th, 2007, 10:33pm

Oxygen has been very very good to me.

However, GP's and PCP physicians (a) rarely encounter one of us during and entire career, (b) consequently don't understand the urgency and the level of pain, and (c) go with treatments that work for more conventional ailments.

There is a deal with oxygen in excess - search for "oxygen poisoning" or "oxygen toxicity". These are at the flows we are talking about. Be careful, find a good head doctor who knows what he is doing. Too much of a good thing can turn on ya.

Is there a listing of knowledgeable doctors anywhere, so we don't all have to go through training new guys?

Title: Re: Oxygen - What's the DEAL!!
Post by Kate in Oz on Jun 4^th, 2007, 10:54pm

I got my oxygen delivered yesterday and guess what... I slept right through!!! I think just having it in the house scares the begeebers out of my beast - it happened last cycle too (either that or I'm nearing the end of the cycle :P please please fingers crossed!!)

Like the others said, if you have to, find another doctor. I know what you're going through as I've had similar problems in the past - doctors would only give me a note to go to ER and even then I'd get funny looks or nurses telling me "oooh I think you've had enough of that young lady" and taking it from me!!!

Don't stop searching til you find a doctor who will prescribe O2, its the best defence!!

Title: Re: Oxygen - What's the DEAL!!
Post by mynm156 on Jun 4^th, 2007, 11:22pm

i HATE TO SAY IT AGAIN BUT NEW DOC WITH QUICKNESS!!!!

GOOD VIBES

HOWARD

Title: Re: Oxygen - What's the DEAL!!
Post by gore2424 on Jun 4^th, 2007, 11:58pm

Can you copy from this website about O2 helping with clusters and show to the Dr. to show her what you mean by you need it now to have it help you ?¿?
Terry

Title: Re: Oxygen - What's the DEAL!!
Post by LindsayLoo on Jun 5^th, 2007, 8:32pm

Update!!!

Finally have a appointment with Neurology on Thursday!! *yippee* But, the neuro usually has PCP's prescribe O2 so his nurse told me she'll put in a note to the neurologist to send a note to my PCP after thursday that she recommends prescribing O2 and if that doesn't work for me then seriously seek a new PCP, which all of you already said to do I know lol

Title: Re: Oxygen - What's the DEAL!!
Post by Brewcrew on Jun 5^th, 2007, 10:18pm

on 06/05/07 at 20:32:54, LindsayLoo wrote:

Good for you - but wtf is this:

Quote:

...the neuro usually has PCP's prescribe O2...

My primary care guy prescribed my O2, but that was because it was 2 months before I could get in to see my neuro.

Whatever. Just do what you gotta do to get it. Sounds like things are moving along.

Title: Re: Oxygen - What's the DEAL!!
Post by LindsayLoo on Jun 6^th, 2007, 1:13am

on 06/05/07 at 22:18:14, Brewcrew wrote:

Good for you - but wtf is this:
My primary care guy prescribed my O2, but that was because it was 2 months before I could get in to see my neuro.

Whatever. Just do what you gotta do to get it. Sounds like things are moving along.

I thought that was weird too but the nurse said the doc's that she works with don't have any patients on O2 ...*Scratches head* Hmmm...

Title: Re: Oxygen - What's the DEAL!! Update!
Post by birdman on Jun 6^th, 2007, 8:02am

You can always go to a local firehouse too. Thay have oxygen and if you are lucky they will understand.
How about my insurance comp (Empire BC/BS) has decided that oxygen is no longer covered for our diagnosis. Only for pulmonary diagnosis. They are gonna get the fight of their lives!
Anyway, if doc's do not cooperate, move to a new one. Only advice I can give.