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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
Bejeeber posted a topic in General BoardHere 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.