Leaderboard

I have the oxygen, thank goodness! It definitely works, but I have been struggling with slap backs. After my first round of prednisone I had been getting hit pretty intensely with the headaches. After doing oxygen treatment for 15min on 15L with a non-rebreather within 30min I got a slap back. I then did twice the time on the O2 and within an hour the same thing happened. After the Imitrex it was 2 hours until the slap back where I just rode it out (excruciatingly) because I felt like it would keep happening if I tried to use treatment. I am now on the second round of prednisone and dreading the coming off it and am trying to prepare in advance. I am taking a high dose of Vit D3 everyday 10,000 IU I believe, but I won't know how effective this is until I am off the Prednisone. I am reluctant to do the psychedelic treatment because I am a nurse. I worked so hard for that license, and more importantly I would be completely devastated if this condition took that away from me as well if I were caught using them.

.....the vitamin D3 regimen has a far, FAR, FAR better success rate than any of these expensive proprietary supplements...careful not to throw so much stuff at the beast that when you tame it, and you will....ya don't know what did it! leaving you at ground zero for next cycle and the same dance starts all over again... ...really, do everything you can to get OXYGEN ...is life changing for so so many....then strongly consider busting!

Making sure your Vit. D level is in the 80-100 range is a start. I had one of those flying to Equador and asked the flight attendant for some ice. Well she brought one big honking bag of ice which did the trick. She seemed to know what she was doing! Also remember that a Red Bull shot also works well (at least for me). Plus coffee.

Thank you for the info Jon. Yes, I have already ordered the ClusterO2 mask and regulator! A point I had not considered re: certification. I will be sure to ask if I decide to purchase a tank/get reimbursed by my insurance. Thanks for this! It seems that DME companies now have a flat access fee of say $130 per month to "access" their equipment. This does not include the actual oxygen content used. For every tank that is filled, there is some smaller charge (I think it was $45 for a type M tank). This is all covered by insurance, so I don't pay the full amount. Still, the cost to me is around $450 per year to "access" their equipment plus however much oxygen I get filled. I would like to not pay for monthly rental access and have a tank sitting unused for years at a time. What I'm trying to find is a DME supplier who will sell me/my insurance a tank so that I can have one at my disposal for the first few headaches in a cluster. That will buy me enough time to get the whole rental thing with Apria, Lincare, etc. started for the rest of my cluster.

The anticipated completion date of the Yale psilo/CH study is June of this year.