Hi and welcome too Ataxia forum,
I'm sorry you haven't answers for your symptoms, medicine can be that wway:\ Just to clarify this forum is not monitored be doctors, it is a patient to patient.
There are many forms and reasons for Ataxia as you likely know after so many years oof troubles. Living in a constant dizzy state is exausting too say the least!
Have you had an MRI ?
For your hypotension there are treatments Do you see a cardiologist too?
If you have someone wiith a phone that could catcch an episode on video that could help your doctors... hard I know!
If you have not been seen by a movement disorder specialist that could be helpful. I'm sorry to hear it has gotten worse , safety is a huge concern.
I wish I could be more help here, but am glad to taklk more if you care to post with more details.
Take care, Amo
Hi, I did not see your comment until many months later. Now, I no longer get the lightheadedness, but the full "drunken feeling" of Ataxia, when reaching out makes me miss things, my legs lose strength and refuse to go where I want them, my body goes left and right so that I walk into walls, and I had a few falls. When I fall I kinda collapse in place. Fortunately, the falls do not happen often. I had MRIs and x-rays (negative because no contrast - allergic), was once diagnosed with a seizure disorder which was taken back 2 years later. OH is definitely a trigger but it happens at other times, too. I just wish I could know for sure if it is part of OH or separate Episodic Ataxia.
Hi again Steiner71,
I understand about seeing posts for sometime. JUst getting through a day cann be tough right?
That continual drunk feeling is exausting to say the least. Trying to control your body and mind when it can't be controlled takes alot of energy.
I'm not that familiar with the Episodic Ataxia so much. The little I read looks as though there are quiet a few types. And it sounds as if many things can be triggers ... Could be your OH is caused by the type of your E.A. ?
MRI without contrast should have been fine to scan your cerebellum for atrophy ... but atrophy is not a must for dx of Ataxia from what I know.
There seem to be many genetic tests to determine types. Has a genetic type been mentioned to you?
Well, that your lightheadedness hopefully has mad life a bit better.
All this neurological stuff can be so confusing trying tto separate it into what ails you , but often it never has answers
I hope you are doing as well as you can today, Amo