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Getting O2 for Cluster Headaches

I've had Cluster Headaches for 15 years and have been using O2 with a non-breather mask and flow rate of 10 lpm. Problem is the lease on my "high capacity" concentrator is expiring, I am now on Medicare and they do not recognize using O2 as a valid treatment for Cluster Headaches, which means they will not pay for the lease on a new machine. I also have COPD, previous smoker like most Cluster sufferers, and based on various tests my Pulmonary doctor would prescribe a low lpm machine but cannot justify a "high capacity" one. I have gone around and around with him about getting the "high capacity" concentrator but he keeps telling me Medicare will NOT pay for it since my diagnosis only requires 1-2 lpm to treat the COPD, he cannot justify to Medicare a high capacity machine. To lease a new "high capacity" machine would cost $250 per month and being on Social Security I just cannot afford it.

QUESTION: Has anyone been able to get Medicare to pay for a "high capacity" 10 lpm Concentrator for Cluster Headaches? Or has anyone, with a conservative doctor like mine, figure out a way to flunk a test that could justify a higher lpm flow rate? I think you understand my problem, have a solution?

  1. Hi pwrnapper,

    Great question. I'm going to direct you to Bob Wold of Clusterbusters, and their Facebook page as well as another Cluster Facebook page. I think you may find the answers there. Here you go: https://www.facebook.com/groups/17789934480/about/ and https://www.facebook.com/cluster.buster.7/?epa=SEARCH_BOX.

    I hope that helps and good luck. Will you come back and let us know how you make out?
    Nancy

    1. Thanks and I signed up to join those sites. Hope it helps.

      1. Me too, please keep me posted!

        Nancy

    2. Hi!
      Sorry to hear about your dilemma. I also get clusters and have O2 at home. I am on State Medicaid and when I asked my doctor about getting it she told me there was no way in hell they would cover it, but she would submit it (basically to humor me). They flippin’ covered it! No appeals, no requests for clinical notes, they just approved it. Only hiccup was they would only approve the 9L tank (as opposed to the recommended 10) because it would have required a second machine. But I don’t know what I would do with out it. So maybe just ask to doctor to try and see what they say. You may be surprised . Good Luck
      ~ Dana

      1. Hi Dana: Thanks for the words of encouragement as I was arguing with them today again and got a flat out NO WAY will Medicare cover it. By any chance do you know the reason or diagnosis your doctor used to get your machine covered?

        Jerry

    3. Hey Jerry,
      I don’t know the specific ICD9 code, but it was just “cluster migraines”.
      Who were you arguing with? The doc or the insurance? It frustrates me beyond belief when a doctor won’t even try.

      1. I'm sorry Jerry...if you lived close I'd let you come use my anytime you want!
        I also have a really great physician that goes to bat for me anytime I need something. I'll email her tomorrow and ask which code they used specifically.
        I don't know if youre familiar with this..but all insurance companies are required to provide you with a case manager if you request one. Mine is great, she works with my doctors anytime there's a bump or something gets denied.
        It sounds like the problem is with your doctor, though...?
        So...I will try to get the code and maybe your Pulm will be able to help if he's a little more about working to get the patients needs met. (not trying to speak poorly of your headache specialist, just not a fan of doctors that dont fight for their patients).
        talk soon,
        Dana

      2. So sweet of you Dana offering to share your O2 with me, very nice. Yes that code might help so looking forward to having it if possible. I didn't know about a Case Manager, which would be a huge help. Do I ask the Medical insurance company or the RX company for a manager? Regarding my doctors, actually my Headache Specialist is really great, gives great service including answering emails but she is extremely busy, has a 4-5 wait for new patients, however she has gone beyond normal practice like giving me injectable DHE, actually contacted me when Aimovig came out and returns calls after hours. She only referred me to the Pulmonary doctor because she knew that Medicare would not approve for Cluster Headaches, figured my Pul Doc would have the best chance success but he is very conservative, won't take risks even at my request and is strict on following the rules, no grey areas with him, it's either black or white. I'm sure changing the script or diagnosis a little would get the job done. In my area the good doctors have extremely busy practices, trying to handle 2,000 patients or more and the overhead is huge. My pain doctor has 10 minute time slots and basically runs in, gives you scripts and runs out. I've gone through 5 different pain docs over the years and this one is the best yet. I'm in the Chicago suburbs if that helps. I know O2 works because I have a "high capacity" Concentrator now but the lease is expiring, that is where the hassle is occuring. But I really appreciate all your help Dana, very nice of you, and I hope things work out since my Social Security budget does not permit buying my own machine or renting tanks.

        Jerry

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