Help Me Out?

My story is quite long, but I wanted to see if I check all the boxes, because I am still undiagnosed.

Spinning in 2008, None since. Did a full test work up in 2009. Everything negative. Been to Hopkins, UVA, and my local guy. No definitive answers. VRT 2x with no real results. Made it worse.

Hopkins put me on Klonopin and Zoloft. Very low doses and after about 3 weeks I started to feel really good.

Started to figure out triggers. Anxiety was resolving. Could go back to work. Enjoyed working again. Been on them for 9 years. Now I only get minimal relief.

I now, for the past month, have heightened symptoms and I am not sure what happened. Right now, the current symptom list:

internal swaying
feeling of moving or leaning forward while sitting
floor uneven when I walk
vision is off a bit
feeling of my brain reacting to a movement, but not moving.

Typically any trigger or anything I have done to trigger a set back, usually resolves and I go on with my life. This is going on a month and I am stuck. Each day is different than the next.


If you haven’t read it yet, I suggest you start by reading this article written by a Johns Hopkins doc. The very last page is a list of common food and drink triggers.

Your symptoms are exactly what many others on this forum describe.

Thanks. I did read it. For some reason, I am having the hard time of determining what this relapse is due to. Most of the time it gets better within a week and I go back to normal, but this one has lasted nearly 3 weeks.

Nothing has really changed. My stress levels were up and I am in a master program that keeps me up late at night at times, but in the last 8 years that has never been a real big issue.

When I go to see my doc in a couple of weeks, its likely that I will be back at my baseline, but I have not been diagnosed with MAV, but wondering if I should ask to do tests over again, considering its been 9 years since the last ones?

I am a bit nervous that my baseline might have changed, which again, has been the same for nearly the past 7 years.

I guess I am merely searching for answers to the questions about changing baselines or relapsing and recovery.

Any suggestions or words of encouragement could be good through this rough part.

You could ask your doctor about the possibility of it being vestibular migraine. There aren’t any tests for MAV (we all wish there were!). I suppose they could re-do the various ear tests to see if anything has changed.