Hi Barbara
I am sorry to hear you are having the same issues. It is so confusing how you can be relatively ok at home but a wreck outside. I to have been to the autonomic testing in London Dr Ingle I think but as you say unfortunately and typically I was fine on that day. He did say I had features of pots and I have a follow up appointment in Dec. It was Dr Ingle who questioned if it was possibly a vestibular prob so that is the next test. I did have the veins in my neck checked for blood supply and this was ok. The spinning out does not stop when I am sitting down. I had a brain scan at the beginning of this so I am thinking of getting it sent to London to discuss with Dr Ingle if there is anything he can see from this scan. I recently had a neck x-ray and they have found some wear and tear at C5 C6. I have also had intermittent problems with swallowing and almost hyperventilating at times not feeling like I am getting enough breath in. When I am out and it is bad I do feel like it is a complete info overload for my brain and often find I just have to shut my eyes to try and get it under control.
I am not convinced it is a vestibular problem as it just seems my brain is not working properly when its really bad. I have said to friends I feel like I have a brain injury. I have no info regarding some of the things you say you were diagnosed with so I shall end this and go on another search to see if any are relevant. Many thanks for your reply it has helped a lot. Gosh it has taken me so long to type this so many mistakes, wobbly brain syndrome. 🙂 🙂 Linda
I have had a read of all your diagnosed issues, very interesting it will give me more info to explore when I next go to Chichester hospital for my neck physio as I believe I am also having these probs, burning sensation and loss of strength in left arm and extreme nerve pain down left arm. 🙂 🙂