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greg

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  1. greg

    20 liter regulator for large H tanks

    Thanks tons, will order asap. Best, g
  2. Can't seem to find a 20 liter regulator for large H type oxygen tanks. I have a 20 liter regulator for the smaller tanks, is there an adapter for H tanks? Thanks all, g
  3. greg

    flying on CH

    quick query. have any of you had take off trigger ch? was told for landing to take sumatriptan 40 minutes prior to decending. got the airplugs. any other advice would be appreciated. p.s. am in 5th month of cycle best, g
  4. greg

    oxygen

    CH father thanks for all, once back home and on my 15 liter tank and having a month of the new vitamin d anti inflammatory regimen, hoping for better results. If cycle still persists, [to date 4 1/2 months], will inquire about busting. Thanks to all for advice and support. g
  5. greg

    oxygen

    Batch, Thanks tons for steering me in this direction. fyi my level was 17, so am on 10k of d3 plus the others in regimen except for super k, will get that tomorrow. Finally getting medical 15 liter o2 from a "angel" provider down south, so won't need the industrial tanks I ordered. Any tips for flying? will have the right ear plugs, nasal spray sumatriptan and that's it. Again thanks. g
  6. greg

    oxygen

    FT, thanks but these are industrial tanks, no medical providers will supply CH customers here in Northern Ca. I could however bring a script maybe Chicago is a different story. g
  7. greg

    oxygen

    Sorry for the delay to all. Update. Purchased new industrial tanks arriving 6/10. Got 6 of those plus correct regulator/mask. Airgas will fill them up 6/11. Then, Batch, got my D level checked and yes it is low, so started otc regimen according to link rec's. Note: Have been taking sumatriptan since late Feb. It still works. But as you all know getting refills is difficult. Over the last three months started with Sumatriptan, then had nerve block injection, then 10 days of Prednisone, then Verapamil at night, to NSAIDS twice a day to no avail. Then since diagnosed with ADHD, have tried 10mg Ritalin three times a day [doc's thinking it could help both] which worked for awhile but now am on day 112 and still getting two attacks pretty much every 12 hours. My neuro, just emailed saying I've been on Sumatriptan too long Gist is, hoping the O2 will take care it and not need Sumatriptan. Problem is I have to fly out of town mid June for two weeks and won't have O2 and now might not even get Sumatriptan. Ok so much for in a nutshell. Best, to all.
  8. greg

    oxygen

    Freud, Thanks, sure send me the number, yet am on the other side of the country. Did follow your earlier suggestion and called the 1800 number customer service and like I posted they, with Medicare on the line said they would update my account to state that Medicare would cover it. Yet would not call the local office here to tell them to fill the order. Called local office and am waiting to hear back. Best, g
  9. greg

    oxygen

    To all, thanks tons for all the input. Today will hear from Apria and will not be surprised if they say no. Today will research where to get local industrial O2 and with the input from all of you try to get the proper masks/valves etc. Give me a week and I'll get back to you. Also in aweek it will be a three month cycle. Worst yet. Best, g
  10. greg

    oxygen

    yes, they said that if they get letter from doctor stating I've had more than 5 ch headaches in a month and ones that range up to 180 minutes, they will cover oxygen. I know, thought i had it wrapped. We also talked with Apria customer service who said they would update my previous account and add that Medicare would pay, then [you'll love this] said I need to call the local distributor. I said can't you call them and tell them to ok the request. they said no I had to do that myself, which will try tomorrow but know will net out the same! best, g
  11. greg

    oxygen

    Batch, Thanks for all the detail. After hours on phone informing Medicare of my 108 attacks to date, Today had Medicare on the phone with me and provider stating that Medicare would pay for oxygen and he finally gave the reason they wouldn’t supply it was Cluster headache customers use too many tanks. Afterward, Medicare said later they can’t force providers to sell. That being said have a couple more left to try here in Sonoma county, ca. If no luck will go the industrial route yet am concerned about purity. Any info on that? And yes my Neuro will provide full bckg. letter with proper codes. Will look at your next vitamin d message, thanks again Best, g
  12. greg

    oxygen

    jon, the three local providers are Apria, flat out said no without any reason. Pulmonary solutions which said get a script for a pulmonary problem and Rotech that also said they couldn't without reason. Believe your provider Lincare might not service west sonoma county but will call anyway. Insurance is Medicare and Humana supplemental. Should I start calling and try to get them to persuade providers and or get my neurologist to call? Lastly heard welding 02 might have purity concerns. thanks all G
  13. greg

    oxygen

    Providers are aware of CH. Must be ignorance of insurance co's since providers all say unless patient has a pulmonary such as COPD, insurance won't allow them to distribute. They won't give any other explanation. best, g
  14. greg

    oxygen

    Am on my 80th day of CH's. Last year was 49. Last year was able to get oxygen from local provider which shortened cycle and reduced length of attack. This year can't get any of three local providers to provide even with script and paying out of pocket. Anyone know of any other providers in northern ca zip 95486 or ideas on how to oxygen elswhere? best, g
  15. greg

    gammaCore device query

    Based on research of the vagus nerve this sounds promising. Any input from trial users or new users? Best, g
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