Jyoti

I recently moved and now live relatively near to Philadelphia. I am looking for a dysautonomia specialist from any of the usual backgrounds within a couple of hours drive. I have ME/CFS as well as (almost certainly) POTS and would love to see someone who had a rudimentary grasp of ME stuff as well as dyautonomic issues. I have been looking at Ramesh Khurana (I see someone said he is no longer taking new patients, but I am inclined to call his office and check) and Emmanuel Nsah, and wonder if there is any info not already shared on this forum that would help me find the right doctor. Johns Hopkins? Anyone been to see Tae Chung? Why is there so little information about the JH POTS program? Any and all experience, recommendations, steer-clear alerts, etc. are most welcome and appreciated. Thanks!

I got an Apollo in December and have been using it regularly since. I love it. I have ME/CFS and dysautonomia so like many I am dealing with a stew of symptoms. It id not the be-all/end-all I had been hoping for, but it is has been a lifesaver in terms of bringing my sympathetic tone down. It is brilliant when I have gone too far, done too much and start to feel that trembling/shaking thing inside. It slows me down, brings me back into balance. I too feel stuck with my sympathetic 'on' almost all the time and this thing really helps me downshift. It is not as powerful as say, a benzo, but it heads in the same direction and there is no danger of overuse. It has a bunch of 'modes' or programs, for things like 'Wake up and Energize' and 'Clear and Focused' which have not been all that helpful to me, but 'Relax and Unwind' is wonderful. It helps me back to sleep when I wake at night, and it grounds me when I edge toward anxiety as my body goes off on its own wonky course. I noticed some kind of interesting systemic shifts as well. The first night I used it to lull myself into a sleepy state I noticed I was yawning and it dawned on me that I hadn't yawned in years. I am just wired, or knocked out. There was something so delicious about that physical process of winding down. My teenaged daughter loves it for her anxiety and also to do schoolwork. It IS expensive, which is a big consideration. Someone on another forum was inspired to try out a small, cheap 'bullet' vibrator wrapped in cloth and strapped to her wrist ankle and got a lot of benefit from that as well. She also put this on her belly which has a lot of pain and got some relief there too. I am fascinated by this idea and I suspect that subsequent iterations of the Apollo (and some others which are in the pipeline) will be even more well-tuned and useful.

@racingheart77--Yes, this happens to me periodically. One curious doctor surmised that it might be due to my oxygen levels falling --not to a level that would qualify as sleep apnea, but close--perhaps because I have cervical spine issues and when I curl up, I create even less tracheal space. She thought that might trigger an adrenaline rush. It made some sense to me. I also use Cortisol Manager by Integrative Therapeutics at night, which seems to help, along with intending to keep my neck from curling. (Which latter probably is not your issue at all, but I thought I would mention the Cortisol Manager.....)