I'm glad you will get tested. Good you told the doctor to keep looking for what is wrong.

As far as the supplements. I have what half of people with Dysautonomia have, Autonomic Neuropathy as the cause.

So, supplements to treat the nerves in the whole body are the only way to heal. Most doctors have no clue about all of that. Integrative MD's have much more training. I am sure they vary though.

This healing is taking years. Dysautonomia is serious and debilatating. I was unable to sit up, I felt I would pass out 24 hours a day, dizzy, horrible nausea, feeling SO hot 24 hours a day, bp was HIGH, could not hear noise without being ill, fragile in every way. So many symptoms since nothing in the autonomic system worked.

I have had this for 3 1/2 years. It is hard to get better when you have it so bad. Each case is different. My doctor has not seen anyone with it this bad.

I hope you get an answer and begin treatment and slowly heal. There are some great forums if you ever need that.

I do see my integrative doctor to update him. He is SO happy I am so much better.

For "exercise" you need to flex your feet forward and back. That is very good. Also, you can lift your leg one at a time off of the floor or chair as you lie down or recline. You can move, you have to just find ways. I have many ideas. I just don't know what all you can do.


Your neurologist can learn. I learned a TON from reading. I have a textbook also, ha. The info is out there on Pubmed etc.

About my bp. I had to take Benicar for three years. My bp was so high. I take my bp several times a day. I am OFF of the med now!!!!! No more med! My bp is good now most of the time.