CaptChaos Posted July 24 Share Posted July 24 Hi all, I've been on oxygen treatment for my episodic CH since 2020 and it's been a lifesaver. My Rx is for "Oxygen with a non rebreather mask. Use at 10-15L/minute at onset of cluster headache for 5-10 minutes as needed throughout the day". It's been over a year since my last episode and when I went to reorder my two M tanks my supply company told me that they no longer do tanks and regulators for CH diagnosis. Rather, they have a new high-flow concentrator that will fill tanks for you at the house. After a lot of back and forth (no resolution) I decided to try a new oxygen supply company as I do not believe there is an effective concentrator for CH, but please correct me if I am wrong. Now, my new O2 company is giving me tanks but they are only allowing 4-6 E tanks at a time. I go through an entire E tank in a day. When I called to refill today they told me I am using way to much oxygen for CH and that I need to try the concentrator. I am only using 10/L minute flow at this time. My CH will go away after 4-6 minutes of O2 and I will breathe for an additional 10-20 minutes depending on oxygen supply. Am I missing something? I'm thinking of having my neurologist rewrite my Rx to specifically state I need pure (100%) oxygen and that concentrators are not an option. Would this be beneficial in your opinion? Lastly, bonus if anyone in here has a great O2 supplier in Minnesota or Wisconsin. I've tried Adapt Health and Liberty Oxygen and I'm curious if there are others before I go the welding route. Thanks! Quote Link to comment Share on other sites More sharing options...
FunTimes Posted July 24 Share Posted July 24 I have to fight with my oxygen company often as well. I keep calling and make my way up from call center to local manager and now I have the reginal managers number and we are on a first name basis.. Don't give up and call until you get what you need. I don't know your situation but I found that paying out of pocket in cheaper for me and also better for the oxygen company because they do not have to deal with the insurance approvals and things like that. I just pay my bill on time and that keeps them happy. Tank supplies at my distribution center get depleted and I have issues getting the M size tanks but getting to know the delivery driver and being kind to him went a long way with me building up a nice stash of "extra" tanks. A cold bottle of water, fresh veggies from the garden or a few bucks goes a long way with the delivery person! Find a way to get someone on the phone that is willing to listen to you and work to get you the tanks you need. as long as they are getting paid for each tank what do they care how many you are using. The supermarket doesn't tell you you can not but 10 gallons of milk a week do they? They just want to sell it and make the profit! Dont take no for an answer and move up the chain of command until you get it. I am not in your area so I do not have a suggestion for what company would be better for you sorry. 2 Quote Link to comment Share on other sites More sharing options...
CHfather Posted July 25 Share Posted July 25 Of course, welding O2 is always an option, maybe even as a backup or supplemental system for what they give you (for example, so you go through the Es less quickly and maybe they stop hassling you about a concentrator, and meanwhile you're building that relationship with the delivery person or some executive at the company). 3 Quote Link to comment Share on other sites More sharing options...
LrgD0se Posted July 26 Share Posted July 26 I use Apria in central WI. There are offices in MN and WI. https://www.apria.com/locations . Funtimes and CHfather offer good advice concerning building a relationship with your O2 provider. I believe I got lucky as the Dist. center manager understood the importance of O2 for CH. I have a credit card on file with Apria and self-pay $25 per M-tank. During the height of my cycle this year I was picking up 4 or 5 tanks every 8 days. There was never any questions about the amount of O2 I used nor were there any suggestions about a concentrator. I would let the mngr know my anticipated O2 needs prior to his twice-monthly order and, would call a day or 2 ahead of actual pickup. Hope this helps. 1 Quote Link to comment Share on other sites More sharing options...
devonrex Posted July 27 Share Posted July 27 As someone who ended up with a concentrator, tell them to concentrate and stuff it where the sun don't shine, they are useless. 2 Quote Link to comment Share on other sites More sharing options...
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