Thought I’d share my experience, as it may be helpful for somebody hopefully. I do not claim the that the recommends below are the gold standard or that it would be suitable for everybody.
Went for an appointment today at the London Balance & Hearing Centre - I had previously seen 2 neurologists elsewhere and on this occasion I finally saw a neuro-otologist (I wont name the doctor here, but if you want the name please PM me).
Took a deep case history and the usual physical examination.
Outcome:
Confirmed Vestibular Migraine and PPPD (although he said PPPD is a symptom not a diagnosis)
Recommend couple VNG tests to check level of compensation;
Told me to stick with Propanolol. I’m currently on 120mg, but he said many patients need it ramping up to 200mg+ to see results;
Heavily stressed the importance of VRT. He claimed that its the only means by which your vestibular system can actually compensate; SSRI’s are simply to manage the secondary physical and psychological symptoms. Said that if vestibular system has fully compensated (as per VNG testing) then SRRI’s are required;
Said VRT has low compliance & gets very boring for patients; urged me to “think outside the box” and do yoga, pilates, Tai Chi and swimming;
His first go to medication is propranolol followed by Citroplam (based on clinical evidence by the Mayo Clinic);
Had VNG, Rotary Chair & Caloric testing done. Tests came back negative; my vestibular system is 100% with no inner ear damage. My final diagnosis is PPPD.
Doc told me to start winding down propanolol, keep up the supplements & VRT
Since starting HYH few weeks ago, my migraines have calmed down a bit (been migraine free for 5 whole days!)
Doctor very kindly offered to transfer me to his NHS clinic
Downside: still suffering from severe physical anxiety, despite migraines and balance vastly improving
Note on the testing - it was unpleasant and left me a bit dizzy/woozy for a few hours but the symptoms vanished after that
I’ve had similar test, results and experience. I did well with VRT. Medication still very necessary. VM is more than PPPD by a lot and I don’t think the testing he did really reflects much of anything going on neurologically.
He first asked me to wean off propanolol. He said medication may be necessary depending on how I am by the next appointment. He said we basically need to calm down the brain using diet, exercise, CBT & meds.
Yes he said PPPD is a symptom. Forgot to ask him what the diagnosis is lol, so I’ll wait for his letter. He said VN followed by PPPD. He didnt mention VM
It was nice of him to move me onto the NHS, without me even asking. He was a very understanding doctor and knew exactly what I’ve been suffering and going through.
I went to the same centre in london, and they told me the same about the VRT, i told them i spent 8 months doing VRT with no result but they said our treatment is different, so i took appointment to see the physio, and he gave me the same exercises! For me VRT is waste of time and money.
I hope it help you.
Btw, i met very nice doctor their and she was very helpful.
