Hi all. New to the forum. Not sure if I have MAV… doctor thinks it’s PPPD, also there’s been talk of vestibular compensation and decompensation. All a bit of a mystery!
I’ll post my experience here. Very long post, but it might be interesting to people. Any suggestions welcome.
Back in 2008, when I was 20 (I’m 32 now), I had a sudden attack of spinning vertigo at 2AM. I was a typical university student and we were all drunk and high at the time, so I assumed it was that, and went to sleep it off. The next day, the dizziness was still there: spinning and severe unsteadiness. My eyes felt pressured , as though something was trying to push them out of my skull… and they looked strange, “glassy,” vacant and staring.
After a few GP visits, I got an initial diagnosis of labyrinthitis. I did an eye test to be sure: results = normal. Also a comprehensive hearing test: results = normal. When the dizziness didn’t clear up after three months, I was referred to a heart specialist, made to do various tests and put on a 24-hour heart monitor: results = normal.
The symptoms continued, coming and going every month or two, seemingly at random: light-headedness and a feeling of being about to fall, coupled with severe pressure all through my head and eyes. It was made worse by being in busy places, like restaurants and supermarkets. Looking at a screen set it off, also reading a book.
Later that year, another attack of spinning vertigo. Ears were blocked for a month, with mild tinnitus. Referred to a neurologist. MRI scan: results = normal. Then referred to an ENT, had diagnostic hearing tests and basic vestibular tests: results = normal. Tentative suggestion that I had “atypical migraine.” Then given a 7-day heart monitor: results = normal. Finally I was sent to a psychiatrist who, after a few sessions, concluded that I have no obvious psychiatric issues, and probably the dizziness was because I got drunk/high at university too much, and it “fried my neurotransmitters."
Through this 18-month period I felt like a pin-ball, flying back and forth between doctors! I was prescribed medications: Stemetil, Betahistine, Amitriptyline, Fluoxetine, Lyrica, a migraine medication (which I forget) and others. By the end I was on a cocktail of five different pills a day. And my symptoms seemed to be worsening: instead of waves of dizziness every month or two, the light-headedness, head pressure and confusion were now daily and permanent. I couldn’t do uni work, nor could I socialise with friends. I moved back to live with my parents, and became socially isolated and quite depressed.
Finally I decided that the doctors weren’t helping, so I stopped seeing them; and that the medications were possibly making the thing worse, do I came off them. Being a lot more mature and proactive at age 22 than at age 20, I started thinking outside the box – doing things like acupuncture, trying new sorts of exercise, changing my diet, cutting out caffeine etc.
And, very slowly, over a few years, it worked. The dizziness started to dissolve away, then by age 25/6 I stopped noticing it completely. I was able to start living my life again. I had a good seven years: I finished uni, went into full-time employment, got a relationship, got a new social life etc. I reintroduced caffeine and (for a while) alcohol, and it was fine. Maybe once a year I’d have a little unexpected flutter of light-headedness, for maybe two minutes, and I’d think “oh yes, I remember that!” But it would disappear again, and I’d carry on as normal. I naively assumed, whatever exactly the dizziness had been, it was now pretty much gone forever.
Seven years later… last year (2019) it unexpectedly came back in full. Initially it was severe headaches at work, then a feeling of disorientation when I was commuting on the train, then finally waves of severe unsteadiness and light-headedness, to the point where I had to sit down in case I passed out or fell over. No spinning vertigo this time, but otherwise the symptoms were the same as 10 years ago; I spent a few months unable to be on a train, or inside a shop or restaurant, unable to look at a screen for more than 20 minutes etc.
Took a month off work. Did lots of things like clear my diet up again, came off caffeine again, started exercising properly again; also bought migraine glasses to help me look at a computer screen. Then returned to the doctor’s office! This time, I was determined to get an answer. Another ENT, who referred me to a vestibular-audiologist. They did two hours of comprehensive vestibular testing, and – miraculously – found something:
“Today’s results indicate a peripheral vestibular asymmetry with lower function in the left ear. There were some abnormalities with ocular motor testing that could indicate CNS involvement.”
Primarily I failed the VEMP test, with 0% functioning in (part of) the left ear. They explained that probably at age 20 I had a bout of vestibular neuritis or labyrinthitis, and it permanently damaged the left ear. Over time, I “compensated” for this loss. It took so long to compensate because of all the medications I’d been put on, and all the anxiety and stress of that time – the condition had been “poorly managed.” Anyway, it compensated and cleared up for seven years. But the brain can also “decompensate,” which was what had happened to me. Possibly it was the stress of the job (though I don’t remember being that stressed); possibly because, at work, the ceiling lights had been starting to flicker, and I’d been standing underneath them for seven hours a day. Also at that time I was having chiropractic adjustments on my upper back and neck (I have a rotated upper spine, so live with chronic pain and discomfort in the neck) – and I wonder whether the adjustments changed my alignment and that confused my balance system. Or possibly a mix of all three.
The audiologist started me on VRT exercises, which I’ve been doing daily for seven months now. The dizziness seems to be slowly resolving: now it’s a light-headedness that comes and goes through the day. Usually I wake up feeling groggy for a couple of hours, then around 11AM I start getting moderate (occasionally severe) light-headedness, which lasts until about 1PM, then I’m OK for the rest of the day. The symptoms are mostly in the background. I’m able to work a busy full-time job, just about! But I can’t commute any more, nor can I look at a screen for the first few hours of the day, because it confuses my eyes and I become imbalanced.
The audiologist referred me back to the ENT department for a second opinion from a specialist in vestibular migraine. He doesn’t think there’s a migraine element. His tentative diagnosis is PPPD (Persistent Postural Perceptual Dizziness), or “secondary autonomic imbalance following vestibular neuritis.”
The PPPD thing makes sense to me, but then so did the compensation/decompensation framework. I’m not sure if PPPD is just another way of describing the same thing, or whether it’s a separate diagnosis. The “visually induced dizziness” part is exactly right for me – I have a textbook case of that. I’m not sure about “postural” or “gait” issues – unless my spinal rotation was a consequence of the initial vestibular disorder, as a way of balancing me.
Anyway, soldiering on. Another appointment with the ENT later this year, for more tests and perhaps a conclusive diagnosis. Currently trying magnesium supplements and powdered ginger tea. Read Heal Your Headache and trying to cut some things out. After I cut cocoa out, I noticed a definite improvement; haven’t had cocoa for six months now. Feeling fairly positive, given everything! At least I’m on the right track… we hope!!