Hi Ang. I knew somebody who took it. This person had none of the health issues that we do. My knee jerk is that it was for acute anxiety (in the case of the above referenced person). When I looked it up (briefly) to see if I was incorrect, it appears to confirm (NIH) that it is used for panic attacks and to reduce inappropriate electrical activity in the brain. It appears to recommend a gradually increasing dosage. Did you inquire as to how it might affect your GI tract? I am not sure whether or not you have GI issues but do know that it is a concern for me and goes hand-in-hand with EDS.
Please bear in mind that I am definitely no doctor nor have I gotten to the place where I’ve mastered my own ‘issues’. I think the girl that I knew said she took it for her legs? She also spoke non-stop about her panic attacks. Maybe it simply calms neurological activity. Especially if it works for legs too. Did your neurologist tell you what he expected to see as a result or what a reasonable goal/expectation of this treatment would be?
I am in the market for a neurologist who understands EDS. Who do you see?