Claired, You may likely have an upper cervical / brain stem issue. POTS can be an autonomic nervous system dysfunction. That is often a brain stem problem. No amount of vestibular rehab will likely help if your autonomic system needs healing. There are brain stem mini-strokes that can cause these issue.

A Physiatrist (Physical Medicine and Rehabilitation) often associated with a Neuro Rehab hospital may be able to help. As Jo*Mar said, an Upper Cervical Chiro may be helpful, too. The Vitamins sticky at the top has links to various Upper Cervical Chiro organizations for a referral to your area.

Have you had an MRI or MRI/MRA or MRI with contrast to see if you have proper blood flow to your brain stem ?

The myriad of ways POTS can manifest and be caused makes your case difficult. It appears you say that the POTS preceded your concussions. Is that correct ?

btw, What area are you in ? Maybe we can help you find a health care provider than can help.

Thanks for responding.
I don't think it's a spine issue. I've had POTS for two years, long before concussions. Symptoms developed shortly after donating blood. Probably autoimmune origin. I'm supposed to be getting Florinef soon.
I think I have trouble doing things bc I've been inside for so long, not exercising, not being normal. You know the phrase, use it or lose it? Well I think from avoiding doing normal things I 'm not comfortable doing them anymore, like the muscle memory is gone.
I was supposed to go to PT in January, but I wasn't able to get a ride there, and I was too afraid. Now it's so much worse though. I can't even walk to the bathroom on my own

What does Occupational therapy do?
I live on the North Shore in MA.
I don't feel even comfortable getting in an out of cars. Like really bad claustrophobia, mostly because I'm so unsure of myself, and my strength is low.

Occupational Therapy is sort of like Physical Therapy except it focuses on the ability to do tasks, like getting up from a chair or the balance issues like you mention. Some PT's do a bit of OT work.

Spaulding Rehab Hospital appears to have all the services you need. They have facilities in various areas of the North Shore. Here is a link to Spaulding : http://spauldingrehab.org/conditions...rehabilitation

It sounds like you also need somebody to help you with anxiety. This is a common struggle for people with balance issues. The claustrophobia feeling may be an anxiety like reaction.

The North Shore is a beautiful area. I used to go fishing on the Merrimack out of Newburyport as a kid.

Thank you for responding.
Yes, the North Shore is very beautiful. I've been to Newburyport a few times, when I was a musician (before concussions and POTS) and played at the Firehouse center.
Yes, I've heard of Spaulding. I guess the main hurdles would be getting to and from the clinic a few times a week, and trying not to be afraid of lots of people moving with heavy equipment in a small space. I suppose that can't be helped. it's funny to think that, if I was able to get to therapy, then I wouldn't need it in the first place

I wonder if you could get approved for a few days of inpatient so you can be fully assessed. Either way, it sounds like you need a serious assessment to differentiate PCS from POTS.

You could call Spaulding and ask to speak to a case manager. A case manager can often help you figure out many of the ancillary issues like transportation.

Do you have good health insurance ? I know Mass requires quite a minimal level of coverage. Would it allow a short inpatient stay ?

I do have MassHealth this year, so that's good.
Tomorrow I start Florinef, a blood volume steroid.
I went to a neurologist in December after my 2nd concussion, and he cleared me for light exercise/PT. He seemed to think POTS was bigger than my concussions. I have a referral for an autonomic specialist in Boston, should I need it, but they mostly just do tests (and some are really scary/uncomfortable, with not much feedback...tilt table, sweat room). There's not much they do for POTS besides florinef/midodrine and lifestyle adjustments.