James Musk

Late June this year (> three months ago), while I was working at my desk, I had a sudden violent spinning vertigo clockwise that knocked me off my chair, no matter how hard I held on to the desk. It settled within a minute. It had happened a couple of times earlier in the year, but never that badly. A couple days later, I had a long drive from the Bay Area to LA. That same week, strong bilateral tinnitus started, 24/7, "out of nowhere" (no such thing), along with lingering daily rocking/swaying. You're standing still and it feels like the floor is sweeping left and right under your feet. You're sitting on the couch or lying in bed and it feels like being on a plane in light turbulence. All of this with a high-frequency tone hissing in your head, non-stop. You close your eyes in bed at night: ringing. You wake up in the middle of the night to use the bathroom: ringing. In the morning: ringing. At sports (when you can): ringing. Didn't sleep well last night? Swaying gets worse for the day. I also get sporadic episodes of muffled hearing / sound distortion in either ear, lasting about 5 seconds, that throw me off balance. Summer was pretty painful, but things have improved slightly since. Def moving forward with my life and trying to "ignore" it as much as I can. The rocking/swaying is especially bad after long car drives, bad nights, or any type of stressful interaction; otherwise limited to a few unlucky moments a week. Doesn't seem positional or triggered by specific movements. Sometimes I have to stop what I'm doing and lie down for a couple of hours to stabilize. Unfortunately, the constant ringing/hissing hasn't gone anywhere. From everything I've gathered, it seems to be a combination of a couple conditions from a group that is poorly understood and not easy to treat, at the intersection of otolaryngology & neurology. Might be some Ménière's disease, plus central sensitization from a failed recovery or something on the vestibular migraine spectrum, worsened by bruxism. I've seen medical staff in both the EU and the US (Stanford). I have to say that Stanford has been very disappointing so far, even for basic care. The staff don't seem to care; the ENT didn't spend much (any?) time discussing possible causes or treatment options. Always feels very expedited. I had to advocate for myself for MRI, including the exact types of MRI I need (thanks, AI). I also had a dismissive interaction with an audiologist who told me to stop using AI to track my symptoms and test results. Finally been referred to the only two neurotologists at Stanford (mix of ENT & neurology), but appointments fully booked through late 2027 (next year..). So I'm back with myself & AI to try to find a solution, plus a couple great medical contacts through friends. If anyone has pointers or specialist contacts, I'd be very grateful :) So far I've had: - CT angiogram of the head & neck w/ contrast in the ER: ok - Zio cardiac monitor: ok - Bloodwork: ok - 2x audiograms: ok (normal hearing, Type A tympanometry, excellent word recognition, stable air-conduction thresholds, left & right ipsilateral acoustic reflexes present) - Neurology office visit and quick tests: ok - Several ENTs who sent me astray in different directions - Bruxism that is making it worse but unlikely the root cause - Short course of vestibular PT, which the therapist said wasn't useful in my case - Vestibular tests: * VNG ocular motor: normal * Positional testing: normal * vHIT: normal * cVEMP present bilaterally: normal * oVEMP at 4 kHz absent bilaterally: normal * Abnormal: absent right AC oVEMP (500 Hz) * Abnormal: rotary chair stopped a few seconds in, triggered the same violent spinning vertigo clockwise * Not yet done: BC oVEMP, bithermal calorics Next: - MRI of the IACs with contrast - Post-gadolinium 3D FLAIR MRI Thanks ;)