Update: Saw my neurologist today finally...aaaaaaaaaand....he actually prescribed the oxygen without me even having to ask for it. Hi flow rate was a little lower than suggested at 10 lpm but I figure I can always buy a different regulator if needed. the tank and script were the important part. Also gave me a script for injections so that's nice as well.

So now my new problem. Oxygen has to be supplied by a DME provider. There was only about 5 in network within 100 miles. and only 1 of them has Oxygen. Their website kind of bugs me a bit though....

Quote: "

Oxygen Therapy
Lincare recognizes that each oxygen therapy patient has a unique set of circumstances based on the progression of their disease state, desired activity level and personal preference. Oxygen concentrators, stationary and portable oxygen systems, and high pressure cylinders are available to coincide with each physician's prescription. It’s our belief that when patient needs are most accurately met, patient outcomes continue to improve.

Regular monitoring of how closely each respiratory patient follows the prescribed course of treatment helps Lincare ensure compliance with liter flow and hours of use. It is this regular monitoring that increases the likelihood that patients will receive the maximum benefit from prescribed therapies. Our wide suite of services also allows for program modifications to be made quickly to accommodate fluctuation in disease condition or change in lifestyle need. As a result, patients and physicians can rest assured that Lincare is equipped to be a long-term partner in the fight against COPD and other respiratory disease. "



This deal about regular monitoring of patient's o2 usage to ensure compliance with liter flow and time used REALLY bugs me and seems to show a lack of inclusion to the unique needs of CH sufferers. I sent them an e-mail asking if they had experience with Cluster Headache patients before I try obtaining anything from them. I may try to convince my doc to write a medical necessity letter to the insurance to let me go out of network to find a supplier that just does their job and "supplies." Idk, is this typical of oxygen suppliers in your experience?

I can't possibly help with your question about suppliers,  Barcode,  as I live elsewhere in the world but happily we've many of your countrymen here who know heaps about this sort of thing.

As to the regulator being a bit light-on,  to the left of your screen is a list of buttons with one marked as  oxygen info  and it's got lots of good stuff about the regulators that work best and what to look for as you shop around.

All the best,  and let us know how you get on.

We care.

Lincare is why i detest medical O2 suppliers, not so much cause of their meddling but how bad they try to bankrupt ya.  Going out of network might get spendy so you might want to check on cost.

Different O2 suppliers around the world all do things differently.

What you posted about seems to be very much focused around people using O2 for COPD and similar, not O2. Whilst we may use a high flow rate for CH we don't do so for long. If they keep insisting on a course of action, point out that you have O2 as prescribed by a medical doctor and ask if they are trying to override what a medical doctor prescribed.

Hi BarcodeJ,
My most recent experience dealing with a new DME provider was horrible as is any day dealing with insurance issues.

Best advice?  Contact the DME provider by phone and speak to someone regarding your condition.  Give them a lesson in CH if you have to.  One other thing I found out was that the insurance company may require your Rx to be very specific.  For example, mine had to say that I needed to use "4 hours of O2 per day".  Really?  I don't use 4 hours in a month thanks to the D3 regimen.

I was able to go on my insurance companies website to find information on how they covered someone with CH.  I did a full printout and took it to my neurologist so that she could write out the Rx with all the specifics they required. 

Also, I called around to every DME provider on my list of in-network providers.  The one that seemed the most educated and familiar with CH is the one that I chose.  I was willing to pay a bit more to deal with someone with CH knowledge vs. being looked at like an alien and having to explain myself over and over again.  The suggestion of going out of pocket isn't a bad idea either.  With my Rx in hand, I was able to get my tank from my previous DME provider for $15.00/month while waiting on my deductible to be met with my new insurance company.

Best of luck to you with all this.

PF Wishes,
Payg

Hi BarcodeJ,
Your situation with o2 is frustrating. Limited lpm and only 1 DME provider within 100 miles. If no satisfaction, you may consider using welder's o2. Pain Free Wishes! ;)

-Gregg