Newbie - Issues Getting Oxygen Prescription Filled

[Mordecai]

Hi All, I feel for every one of you and am so grateful I found this forum.

Back story, I am a 41 year old male and started getting CH as far back as high school. At that time I thought it was glasses as I couldn’t see well, and then through my late teens and 20s I thought it was due to dental issues, but they still came back. When I finally had good insurance (around 2008), I had talk to my PCP and he diagnosed me with Episodic CH. I usually get them in spring or fall and sometimes summer or winter. I was prescribed sumatriptan nasal sprays which usually work for me in 15mins, but it seems to give me rebounds, so I only use them in emergency situations. I usually suffer though the attacks and would chug 8oz of water every 30 mins, which makes it hard to go places. I found MM on accident helps.
 

Since I found this site, I’ve been reading through the different abortive methods and finally went to my doctor to ask about the D3 regimen, which he said he could not get behind because it’s toxic levels. he is referring me to a neurologist ( I had a cat scan back in 2020 to rule out brain tumor). Im hoping the neurologist will be able to help me with the D3 regimen, but we’ll see. I was able to get my PCP to prescribe O2 (I had to ask and he prescribed two 3gal tanks), which I picked up yesterday from a local home medical supply company and they let me pay out of pocket until insurance was ran. And man oh man that was the fastest relief I’ve ever experienced! My only problem is, the medical supply store calls and tells me insurance won’t cover it since it’s for CH and they don’t accept out of pocket payments??? WTF! I called the only other medical supply store and they asked what the prescription was and told me the same thing insurance won’t cover so I can fill your prescription. So I get emotional from finally getting O2 and then sadness when they take it way a day later…. They are letting me keep until Monday at least.

Does anyone know how to get past this? I had the doctor right me the prescription again. So I picked it up, but don’t know who to call or how to word it to them. I called insurance company and they weren’t the most helpful. It really sucks to have this right in my fingers, but can’t get it filled.  I don’t mind paying out of pocket, I use my HSA anyway, but just reaching out to the community. 
 

Thanks,

Mordecai