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Everything posted by SixThirty

  1. Thank you, thank you, thank you, thank you! I did order the CH mask, thinking that the mask was the primary issue, which: it was part of the problem, but it's definitely flow rate that's the bigger issue. Will definitely get a regulator on my own and install it ASAP. I will say that the people at that office were really nice, and because I was an "exception" they won't deliver to me, which actually did give me the opportunity to go out there and meet the woman who runs the office (I think it might be a franchise?) in person, which was fortunate, because not only were we able to have a discussion about CH and she made it clear that she understands as much as a non-sufferer (Is there a catch all term? Lucky Majority?) who isn't directly affected can, I was able to be effusively thankful and as charming as I could muster after the weekend I had, and then literally wept with relief when they wheeled a tank out to me. Those of you who asked about legality of Rx refusal - good point! I'm actually lawyer, and I'm going to do some digging... if I can find some broad information or even information for any given state, I'll write up something and post it in General. Thank you again! Wishing you all a great weekend! Six
  2. So when I picked up my tank I was told I'm lucky that the woman who took my original call was sympathetic, because they have "stopped filling orders for Cluster Headaches because with Covid and everything, they're not profitable. You shouldn't have been accepted, but you were." She did also say she knew how bad the suffering is so she was happy that I snuck into their system, but the message was clear that they unfortunately won't be of any help to anyone new going forward. Which sucks for anyone in LA in need. I'll keep an ear to the ground. Now to see if they'll take a new Rx from my GP for a higher flow rate - 15L/min isn't cutting it, and that little bag isn't filling anywhere near fast enough for true efficacy...
  3. Of course. Reviews aren’t great - but any port in the proverbial storm.
  4. Update: Found one! Not under my insurance but have O2 and well versed in the needs of Cluster sufferers, which is a small miracle in itself.
  5. Hi all, Trying my first bust and the slapbacks/attacks are absolute MURDER. My GP has written me an Rx for O2 based on the reference page here (THANK YOU TO WHOMEVER PUT THAT PAGE TOGETHER!) but naturally my insurance will only pay for O2 from a single supplier within 50 miles, and they are, in their own words "Out of Oxygen". I'm ready and willing to pay out of pocket, but can't identify a medical O2 supplier in Greater LA despite my best googling efforts. Anyone out there live in LA and have any recommendations or leads? Thank you, and Be Well!
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