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Second Update from the OP Well Hallelujah and pass the ammunition. Last week I got a call back from my Doc's office, they needed help filling out a form from Aprila Healthcare for the O2 setup. They asked me all the medical questions again about our condition, stuff I know is in my record, but I'm in no mood to complain since it looks like we're making progress. Stuff like eye swelling, nasal congestion, consistent pain location etc (you know all the symptoms). She says she's sending the form over to Aprila and they should contact me. Sure enough Aprila calls me Friday to set up an appointment. I have to come in to be trained how to use the equipment. I went in for my appointment today, got the rudimentary explanation how to use everything, They gave me 3 small tanks to take away with me, mask, hose, regulator and carrying rig. They set me up for delivery of their largest tank, which is supposed to come this afternoon. They'll deliver tanks whenever I need them from this point forward. Here's the kicker - Its all covered by insurance! I was presented a zero dollar invoice when I left. After all the hassle, I felt like I hit the lottery. I guess calling my CEO and complaining to him about our health insurance may have helped. Apparently threatening to pull the account of 600+ people has a way of getting an insurance company's attention.

Once I went to strictly welding O2 I thought I was set. But there are still problems sometimes. I usually have to prove ownership of the tank by carrying around the purchase receipts when I have them filled. I often have to exchange my tanks, which I hate but tolerate. I also still carry a print out of my O2 Rx with my portable tank, regulator and mask. But I NEVER mention medical oxygen or Rxs with the welding store. They get really weird about selling welding o2 when you do that. I have two 125 cu ft tanks (M tank) and I fill them with welding o2 for $20 each. I also own 2 E tanks that I fill with a transfill rig I bought off Amazon. These days my O2 bill is down to about $40-60 per month. However, there were some steep up front costs. Each 125 cu ft tank was about $250, and the E tanks were about $50 each. The transfill rig was about $80 off Amazon.

@signals61 hey! I too had similar frustrations with the oxygen. My doctor even warned me ahead of time that he would gladly write the script, but that doesn’t mean I would easily get the O2. When I called to get the oxygen they said I needed a blood test to confirm that I needed the O2 in order to live. When I explained it’s for cluster headaches she cut me off and told me they don’t cover oxygen for “headaches” because it’s not life threatening LOL. I told her it’s not life’s threatening but cluster headaches will make you wish you were dead. And I hung up on her. Long story short, I didn’t go through my insurance and I pay $78 per tank out of pocket. Kat

@jon019 You're right and at my worst moments last summer it would have saved me from the total agony of "10" attacks that came like clockwork every 12 hours. If I'd have been prepared ahead of time it would have saved my daily life and allowed me to function I'm sure. The key is being prepared and therein lies the rub. Obtaining oxygen is not easy either way and more complicated than it should be. I appreciate that is something a lot of people on this board fight for. Whether by prescription or "homemade" it shouldn't be so difficult. The fight to fill a prescription is exhausting and if I didn't have a nephew who does welding I'm not sure I could put all the pieces together for my own kit without some difficulty. Now that the vicious CH cycle has morphed into something more manageable it is time to look into oxygen.

This is why I cringe on this forum when someone glibly tells me (or someone else) that I should be on oxygen. As if I hadn't considered it and the hurdles aren't insurmountable. I haven't found a doctor yet who over the years hasn't waved me off with the request. Much less have the chance to try to get it filled. It was kind of a bummer reading this because I have been thinking about trying again but probably not now. What's the deal with welder's oxygen? My nephew does welding and he does it in his garage. Should it be easy to setup for medical reasons? Is there any info on here in a single place by any chance?