2 years into vestibular migraine… does anyone else feel like they’re living in a dream? Does it ever truly get better
everyone,
I’m a 36-year-old male and I’ve been struggling with what my neurologist diagnosed as vestibular migraine for about two years now. I’ve had a brain MRI with contrast, cardiac workup, ENT evaluation, eye exams, vestibular testing, and the dangerous stuff has essentially been ruled out.
My biggest symptom isn’t actually the headache—it’s my vision.
The best way I can describe it is that I can technically see fine, but my brain doesn’t process what I’m seeing correctly. Looking into the distance is extremely difficult. Looking from right to left or scanning visually is exhausting. Grocery stores, Home Depot, Costco, fluorescent lights, and large open spaces absolutely destroy me.
I feel like I’m looking through a dream or underwater. It’s almost like derealization, but it’s triggered by my vision.
Some of my other symptoms include:
Constant dizziness/off-balance feeling (not room spinning)
Ear fullness, especially during flares
Head pressure/tightness
Extreme fatigue
Visual motion sensitivity
Feeling like my eyes “don’t want to wake up”
Difficulty making eye contact because my vision feels so disconnected
Anxiety that seems to flare when my vestibular symptoms flare
One interesting thing is that moving my head, looking side to side, or visually busy environments make everything worse.
Another thing I’ve noticed is that when I’m extremely fatigued, all of my visual symptoms become dramatically worse.
I’ve started vestibular therapy before and I’m planning to restart it. I’m also currently adjusting my medications and trying to improve my lifestyle (better sleep, eating breakfast, cutting out nighttime sugar, staying hydrated, and eventually quitting vaping).
What I’m really looking for are experiences from people who have been through something similar.
Did anyone else have vision as their worst symptom?
Did stores and visually busy places make you feel like you couldn’t function?
Did you ever feel like you were living in a dream or that your brain couldn’t process what your eyes were seeing?
What treatment actually helped? Vestibular therapy? CGRP medications like Emgality? Something else?
Most importantly… did you eventually get back to living a normal life where you could walk into a store and not think about your vision every second?
I’m trying to stay hopeful, but this has become the biggest quality-of-life issue I’ve ever dealt with, and I’d really appreciate hearing from people who have come out the other side.
Thank you.