@ethanmcconkey @betsy101 I know the frustration of not having a diagnosis having gone almost a year and a half without one for cirrhosis. I was having confusion episodes (along with other symptoms) so was sent to a neurologist. He was the first person who suggested liver problems!
I don’t know where you are, but what I learned from this was to not wait locally if a diagnosis is not forthcoming within a couple of months. I am about 55 miles outside of Boston, which is where I had a liver transplant, and now go there for everything other than my PCP.
I don’t think my sleep problems are as severe as yours, but I also very often wake in the middle of the night (bathroom calls) and don’t get back to sleep for hours, so I can sympathize with your plight. I don’t have “fight or flight” feeling, just an overactive brain spinning around. I will be very interested in hearing if a solution is found for you, please let us know how it’s going.
JK

@ethanmcconkey Thanks for getting back to me. I have read the posts from the people you mentioned, and felt much compassion for the severity of their symptoms. I have described my feelings on being awakened as "vibrations", as opposed to tingling (which I feel in my legs from pressure on nerves in back) or tremors (which the neurologist prescribed for) and I think this term has perhaps stumped my doctors and made them think it is "all in my head." I often feel tired and drained if the vibrating has been especially intense or lasts longer than usual. Knowing that it might be an over reaction to low blood pressure has given me a different view of this. I have been sleeping better the last few nights, so am feeling better. I've tried raising my upper body at night, which seems to help, but is awkward since I sleep on my side.