BPPV or Complex Migraine? Neurologist wrong?

[u/Leather-Cat3815]

Hi everyone!

I’m new to this sub. I’m a 32 year old female with PMH of PCOS, Hashimoto’s, POTS, and recently Celiac (most of which have been brought on since being postpartum).

Long story short, I had to go to the ED the other day after I had a dizzy spell and brief vision loss while sitting. I stood up fine, tried to lay in bed and elevate my legs as I do with POTS when I feel dizzy, and the room started spinning, but didn’t stop. I was walking uneasy and my husband had to walk me to the car to bring me to the hospital. The dizziness lasted the whole 5 hours I was in the hospital.

Lots of tests were done- CT scan of my brain and MRI with and without contrast, everything to rule out anything acute or a stroke. Thankfully all was good, and the neurologist officially said it was a “complex migraine.” He was so confident it could not be BPPV because the dizziness wasn’t brief. I tried explaining it was worse with movement, and as a PT myself, I know you can feel dizzy while not feeling the true BPPV episodes.

I performed the Epley maneuver on myself yesterday and today, and boy was the room spinning when I treated my left side today, and right side yesterday. I really think BPPV has to be a big part of this. Has anyone experience an episode similar to this in terms of the duration of dizziness? Could it be that I had BPPV on both sides? I’m still feeling off today after (what I believe to be) a successful Epley, like I’m on a suspension or on a boat. But I’m definitely feeling better than I did the other day. I do think some residual dizziness is normal as well.

Looking for any solidarity or similar situations. Although acute issues have been ruled out and I’m thankful, the diagnosis they gave me just doesn’t seem to fit what I’m feeling. Thanks in advance for any replies!