I've just come of Medicare age. Recently, after a hiatus of 4+ years, the Beast has returned with a vengeance. Imagine my shock when reading that Medicare CMS has decided that oxygen is not effective for CH. Really??? Everyone in the community, including all of the top headache specialists lobbied agains this to no avail. They will accept it if you are enrolled in a clinical trial they approve of. Currently I find 2: Pennsylvania and Denmark. Live in California. Just great.
So, this brings me to my question, although I could go on ranting for a long time. Has anyone tried to get oxygen (not welder's) paying out of pocket. Any idea of costs? Any suggestions welcome, as I can abort anything <KIP 6 with O₂.

Just go the welders O2 route.

   Potter

I haven't needed to replenish my O2 since 2011, mostly due to great results from Batch's D3 regimen. But at that time, my M60 tanks cost $22.00/tank out of pocket in Wisconsin. Every region will be different. I would contact a medical equipment provider in your area, and explain your situation.
~ pattik

I paid $100 to buy a full E tank and it's $20 for a refill here in San Jose.

We have covered this topic before and I recall that there is no reason to not using welder's oxygen.

I recall it was about $130 per month last time my HMO insurance would not pay for it. At least I got unlimited E tanks for the price.

Hey DTruett

We did battle with CMS 2009-2010 over their non-coverage determination for home oxygen therapy as an abortive for cluster headache.  We had a Blue Ribbon team of cluster headache experts from the American Headache Society headed by Dr. David Dodick, MD FAAN, Mayo Clinic, and Dr. Debora Friedman, MD, MMSPH, UT Southwestern, a neurologist and Public Health Expert, with Fred Sheftell, MD, FAHS, past President AHS and me flying fighter cover...  (I'd already launched a private effort to overturn the non-coverage determination so knew the CMS players and their dirty little game...)

The short story is the social progressive bean counting bureaucrats at CMS used dirty tricks and junk science to overrule and discard the real medical evidence attesting to the efficacy of oxygen therapy as the first abortive of choice in treating CH provided by Dr. Dodick.  (Note:  The war with CMS isn't over... When we get a conservative in the White House... we're going treat CMS to some Shock and Awe...)

You have two options for oxygen therapy.  Pay cash for medical oxygen or go the welder's O2 route.  In either case you'll be money ahead buying your own oxygen regulator over the Internet and the Cluster O2 Kit (non-rebreathing oxygen mask with 3-liter reservoir bag) from DJ here at the CH.com store yellow tab at the left.

If you want to pay cash for medical oxygen, have your neurologist write you out a hard copy Rx for home oxygen therapy. 

Have the Rx written as shown in quotes
"Gaseous 100% Oxygen (GOX) at a flow rate of 15 to 25 liters/minute with a non-rebreathing oxygen mask as an abortive for cluster headache." 

With the Rx in hand, go to the nearest home oxygen provider and tell them you will PAY CASH!  You want an M-size Oxygen Cylinder.  It should cost (cash price) $30 to $40 plus a deposit.  If you pay with a credit card there may not be a deposit.  Refills will cost the same...

Buy your own CGA-540 0-25 lpm oxygen regulator.  There are several choices here. 

GENTECH has the best deal at ~ $40 for a CGA-540 oxygen regulator with barb fitting and selectable flow rates (0,1,2,3,4,5,6,10,15,25)

I've owned and still use Flotec's oxygen regulators since 2005.  They're great and not that much more expensive than the cheap knock-off regulators.  The advantage of going Flotec is the 0-60 liter/minute flow rates. They're the only OEM providing this high a flow rate...  At 60 liters/minute flow rate, this regulator will blow your shirt tail out and you'll hyperventilate like a big dog. 

You can call the Flotec Order Desk Telephone: (800) 401-1723  Ask for Ashley.  Tell her you're a cluster headache sufferer and need a CGA-540 regulator with a barb fitting and 0-60 liter/minute selectable flow rates (0,1,2,3,4,5,6,10,15,25,40,60).

WT Farly has a great CGA-540 0 to 25 liter/minute regulator for ~ $50 Part Number OR-540A25B3

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Finally there's CPR Savers
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Welder's O2 - Go to any welding supply outlet and ask for an M-size Oxygen Cylinder.  Tell them you've taken up metal sculpting and have an acetylene cyclinder and regulators and torch so only need the oxygen.  They'll charge you a deposit worth the replacement cost of the M-Size O2 cylinder ($200 - $290).  After that refills will run $30 to $40...  All you do is drop off the empty M-size O2 cylinder and pick up a freshly charged cylinder.

The "How To" for oxygen therapy as a CH abortive can be found at the following link here at CH.com:

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If you want even faster abort times, then I suggest you start the anti-inflammatory regimen.  You can read about it and the required supplements at the following link:

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Check you PM inbox...  I've sent some additional info.  If you've any questions or problems, shoot me a PM.

Take care and please keep us posted,

V/R, Batch

I too am on Medicare and have a Medicare supplement through Humana. With a Dr's recommendation and documentation that you have clusters Humana has an agreement with Apria O2 supplier and you only pay 20% of the cost...usually 5 E tanks at a time.
This year Humana's co-pay is $0 and the benefits are great for Dr visits and RX. You might want to contact Humana and see what they offer. I did look and Apria does have locations in CA.

Worth checking it out..
Judy

Thanks to all and particularly to Batch who send me info on the anti-inflammatory regimen by Email.
I didn't want to go the welder's route right now. I have the non-rebreather mask I bought here some time ago. I just don't have it in me to go through the hassle of finding fittings and flow regulators for welder's O₂.
I'm in the middle of a divorce, selling my home, and a host of other personal issues that drain whatever time and psychic energy I have. I am encouraged by the posts that list the charges from providers that are not excessive. I will look into that.
And, BTW, I have this thread set to be notified of replies, yet I have gotten none. I assumed there were no replies. What's up with that?

dtruett wrote on Sep 15^th, 2015 at 7:15am:

Thanks to all and particularly to Batch who send me info on the anti-inflammatory regimen by Email. I didn't want to go the welder's route right now. I have the non-rebreather mask I bought here some time ago. I just don't have it in me to go through the hassle of finding fittings and flow regulators for welder's O2. I'm in the middle of a divorce, selling my home, and a host of other personal issues that drain whatever time and psychic energy I have. I am encouraged by the posts that list the charges from providers that are not excessive. I will look into that. And, BTW, I have this thread set to be notified of replies, yet I have gotten none. I assumed there were no replies. What's up with that?

We gave you the best advice there is and you don't have the time to get onboard. Shit.

           Potter

Dtruet...I totally understand that you are overwhelmed at the moment..been there. However I will tell you that O2 makes the other hurdles in your life easier because you are not being drained emotionally and physically by each CH you have to suffer through.

Wishing you pain free days.
Judy

wrote on Sep 15^th, 2015 at 11:05am:

We gave you the best advice there is and you don't have the time to get onboard. Shit.            Potter

I didn't get that from his post. In fact, he sounds VERY short on time. Shit? Stay classy, dude.  ;)

For many years I suffered needlessly because I thought that it was going to difficult/complicated. Boy, was I wrong - it was faster, cheaper and easier than getting medical O2. I suffered horribly and kept telling myself that there had to a better way.....without really looking into it.

I even put together this simple series of page and pictures to show how easy it is.

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THE FITTINGS ON LARGE MEDIAL TANKS ARE THE SAME AS ALL WELDING TANKS. REGULATORS ARE INTERCHANGEABLE.

I can say from experience that people are resistant to dealing with something unfamiliar. Most do not realize that the O2 put into welding/medical tanks come from the same hose on a very large tank. They are NOT different grades.

Having been chronic for over 14 years, I don't wish even one unnecessary K9-10 Cluster Headache on anyone.

Marc

pattik wrote on Sep 15^th, 2015 at 5:59pm:

wrote on Sep 15th, 2015 at 11:05am: We gave you the best advice there is and you don't have the time to get onboard. Shit.            Potter I didn't get that from his post. In fact, he sounds VERY short on time. Shit? Stay classy, dude.  ;)

Thank you, pattik. I have my own reasons for wanting to not go the welders' oxygen route right now. I found Potter's response to be inappropriate. I did NOT ask for advice on which oxygen to use. I asked how much people had paid for medical oxygen out of pocket.
Potter, just because I don't want to do it YOUR way for my own personal reasons is no reason to show your disdain. Until you've walked a mile in my shoes.

dtruett,

Good point - you specifically asked about cost of medical O2 - and clearly said that you did not want to go welders O2.

Yet, I jumped on the bandwagon about welding O2 because I like it so much. Sorry about that!

With a prescription, the local medical supply here in town charges $44 per refill of a fairly large "M" size tank, with a capacity of around 3,400 liters.

Marc

Just trying to save you a buck.

        Potter

OK. We're good then. I absolutely am going to look into welders 02 when things have settled down with the divorce, house sale (getting an offer, so I'm working both ends), garage sale, packing, and more. I just don't have the time or energy at this moment in time. I will later.


wrote on Sep 17^th, 2015 at 5:27pm:

Just trying to save you a buck.         Potter

Been through a nasty and protracted divorce - wondering how you are holding up?!

Marc

Thanks for asking, Marc. In all honesty, not so good. What should be a simple divorce: prenup, retired, no kids, very little to fight about. However, my soon-to-be-ex wife seems to want to fight. Even after I gave her 10.5K I wasn't legally obligated to. Not fun. House waiting on a contingent scale, CHs, and more fun. >:(

I unfortunately found out that Medicare, even with a supplement will not approve O2 because they do not believe it works. I did find a self pay supplier (with an RX) that charges $8 E tank, $15 M6 tank and $35 for an M tank. When you are ready you might just call around and see who will accept self pay and how much they charge.

Here's hoping things settle down for you soon. Sorry for the misinfo earlier.

Judy

I've sadly found the same thing. In desperation and with little spare time to go the welder's route, I found a place that sold me two E tanks and charge $15 for a refill. Pricier, but not as pricy as not having O₂ during an attack.

I am so glad to hear you have found a source! I have pulled $ out of savings before to have O2 but every penny is worth the relief! And the relief from this pain will make it easier to deal with all you are going through!

Doing the happy dance for you!
Judy