First acute balance issues: November 2019.
Number & duration of acute phase(s): 24/7 since November 2019.
Any suspicious physical event/trauma leading up to dizziness:
I had my first migraine with aura (room slowly turned upside down, lost eyesight in one eye, couldn’t talk properly, no pain) in August 2019. I had a kaleidoscope visual aura two weeks later, aborted with Sumatriptan. And another smaller migraine a couple of weeks after that. Neurologist tried Venlafaxine (failed), then Bupropion (gave me tinnitus). 6 days after stopping the Bupropion, and while I was hiking in November, I got super dizzy and it hasn’t stopped since.
I’ve never had migraine aura before this in my life (I’m 38), and never been motion sick or dizzy. I have had occasional headaches, particularly when working long hours in front of the computer prior to all this.
Start of chronic phase: November 2019.
Age at chronic onset: 38
Started and stopped:
- Venlafaxine (increase of tinnitus after a few days)
- Cymbalta (same problem)
- Lexapro (5 days later, tinnitus screaming)
- Amitriptyline (12 hours later, tinnitus bonkers)
- Verapamil (5 days later, although dizzy disequilibrium went away completely on day 5)
- Propranolol (2-3 days later, plus super low heart rate)
Currently trialing: Emgality (giving me tinnitus also, but not as bad)
Number & type of consultants seen to date:
- General Practitioner (wasn’t sure)
- ENT (diagnosed vestibular migraine)
- Neurologist (diagnosed vestibular migraine/PPPD)
- Neurotologist (diagnosed vestibular migraine/PPPD)
Seen balance/migraine specialists at Stanford and UCSF and had numerous tests: VHIT (normal), VEMP (normal), Audiogram (high frequency hearing loss, but stable), 2xMRI (all clean), Computerized Dynamic Posturography (excellent balance across visual, proprioception and vestibular, 99th percentile), full blood workup, all normal.
Diagnoses received (one I’m “running with” first): Chronic intractable vestibular migraine/PPPD.
Medications used successfully for MAV: None
Failed medications for MAV: See above.
Non-pharmalogical treatment tried which helped:
- Exercise (45 minutes every day, same time of day)
- Vestibular exercises (including virtual reality Oculus Rift, which has been excellent)
Non-pharmalogical treatment tried which didn’t seem to help :
Dietary triggers identified:
Any hearing loss in either ear: Bilateral high-frequency hearing loss since I was a child. Stable.
Persistent or intermittent tinnitus and character: Persistent tinnitus since I was a teenager. Never fluctuated until I started taking MAV medications.
Other chronic conditions I’m suffering from: None.
Medication I’m taking for other conditions: None.
Any personal history of migraines: None.
Any family history of migraines: None.
Any history of ear problems: Father and Uncles have high frequency hearing loss. Likely genetic.
How did friends, family, and doctors react to your symptoms?: Supportive.
- Disequilibrium (varies, but usually increases in the afternoon/evening)
- Head pressure, eye socket pressure
- Feeling ‘headachey’
- Pins and needles in the face.
- Screaming tinnitus (varies)
- Neck/upper back pain (not too bad)
My Worse Day Now: (description of the worst day you get now)
- Disequilibrium increases, walk a bit wobbly and feel unstable, but I can still walk/drive.
- Get a lot of brain fog, tired.
- Screen time (I’m a computer programmer, yikes) longer than 2-3 hours seems to really spike things.
Start of Journal
I collect a lot of data:
Dizziness (0-10, where 0 is crystal clear day, and 10 is bed-ridden dizziness. Three samples taken per day).
A few interesting points about these graphs:
- Tinnitus trend is increasing as I start and fail the medication trials (they all seem to spike my tinnitus to levels I consider to be unbearable).
- Dizziness is trending down, irregardless of the medication failures. I think lots of exercise, the “Dizzy Cook” diet, and vestibular exercises are improving things.
- I started Emgality three weeks ago, and despite a rough first week, it looks like it’s had some impact on keeping the samples centered around the 1-3 dizziness range.
I feel genuinely lucky that my daily symptoms are tolerable, particularly compared to some of the stories I read here. I also can’t believe I got a quick and accurate diagnosis (although, frankly, it was hard to accept – migraine causing 24/7 symptoms, no way?!).
I’m planning to keep trialing medications until I find one that doesn’t spike the tinnitus. I’ll keep you guys posted on progress!