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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

Searching for a Transfill valve to fill E tanks with welder's O2 to prepare for CH episode. First time O2 use & hoping for reviews of Transfill valve models. Thank you.

I need help. Long time ch. in cycle. Suddenly cycle became much worse. Ran out of o2. Its Sunday. Supply stores are closed. Won't help me. Someone please tell me there is a way for me to obtain multiple tanks of o2 on a Sunday when everything is closed! Desperate. Kip 8-9 all night last 3 nights. Anyone ever had to find an emergency alternative source for o2???? Help. I don't know if I can survive a night without it. Barely can with it. No sleep at all in 3 days.

Quick question: I have wondered this for awhile, and I am sure this has been covered before but at what point are you just wasting O2. I awoke this morning in a battle with a K8 and hit the O2 hard, took about 30-35 min for the pain to get manageable, then at 40 min it was down to nothing, but I didn't feel that magic moment that tells me it is completely over. I believe all the O2 users know what I mean, if not I feel this release that tells me the beast has slipped away, and then I continue for 5 minutes. Today it took like 20 min no feel of release but pain was not there so I stopped the O2, and feeling like a mild shadow. I stopped the O2 in fear I was wasting my precious supply ( and I have a good supply of O2). So simply put, what are peoples experience with staying on the O2 and stopping due to fear of wasting their supply? Thanks in advance for any and all info CB

Hi All, I am 2 weeks into my cycle, and finally got the o2, which was not easy as the insurance company was not cooperating. anyhoo... I now have my M60 tank @ 15lpm. I am trying to get down the method for taking the o2. The non-rebreather mask does not seem to work so well for me, but I may be doing it wrong. I felt like breathing normally in the mask, did not give me full o2, but a mix of expelled air and o2 mixed. My method was to fill the bag (hold finger on valve), then breath in deeply (via mouth), remove mask and exhale, then repeat. After about 8 minutes or so, my lips and face would start to tingle- this did not give me a good feeling. Ultimately using this process, I would get the beast to retreat after ~15mins, but the tingling face cannot be good, and I am wondering if I am messing up my o2/co2 levels in the process? I'm actually nervous to use the o2 again because of this feeling. Should I be leaving the mask on, and doing much shallower breaths? I feel like I am emptying the bag and then waiting for it to fill again, at 15lpm. I am aware of the clusterO2 kit but not sure if that is my current issue, and using the o2 again has me very weary. Please offer any suggestions or tips, thanks in advance!! Mike

Here on a Sunday I'm requesting an O2 prescription via my online "patient portal" with my GP doctor's medical group, in hopes of them seeing the request first thing Monday morning, and my being able to fill it on Monday. I had asked the doctor for a prescription weeks ago when I suspected a cycle could be starting up, and now that I know one is indeed getting in gear, I've learned no prescription was called in. Maybe because as a GP he'll have no experience with CH and not know what to write. So I think I'll offer an example of exactly what he could write, and although maybe I should be an activist about educating him on high flow 100% O2 just in case he ever encounters another CH patient, I'm a little more about the most pragmatic way to ensure he'll write a prescription at all right now. It has been my habit in the past to work the system by getting whatever sort of prescription, then yanking the whimpy low flow regulator off the M tanks delivered from Apria and throwing out their joke of a rebreather mask practically before the door even hits them on the way out, while fastening my hot rod high flow regulator on there in order to get down to some real business. So who here knows exactly what a GP would be likely to automatically and unquestioningly agree to write for a CH O2 prescription (that I could then do my own thing with)? Welding O2 will be my backup plan, and I'll be seeing if per chance there is a local headache specialist that doesn't engage in the standard and grossly negligent practice of making CH patients wait for months for an appointment. Also I'm busting, on the D3 regimen with benadryl, know about all the pharma, blah blah.