Hi I was diagnosed in 2020, by an ENT. I had an audiologist examination and an MRI, and a week of steroids to see if it was Viral Labrynthitis (these had no effect) I gave up alcohol and caffeine for 2 years after diagnosis and it didn't make much difference. I never did manage to moderate salt. I was also on Acyclovir 400mg daily as a preventative for cold sores which I get too often for my liking. Cut to 2026 and I've had no vertigo for 2 years, but I've had constant ear fullness, tinnitus and approx 40db of hearing loss in the affected ear, according to Apple Health hearing tests. I tried betahistine 8mg 3 times a day for a few months - didn't seem to do much. I'd like to try it again but my GP is reluctant to prescribe it, saying that it can cause Parkinson's (which my dad has) It's either a long waiting list or an explosive private consultation to see the ENT again, as it's now a pre-existing condition on my insurance. I'm in the UK by the way. I'm looking forward to catching up on all the posts here and becoming part of the community.
I'm not aware of betahistine causing Parkinson's, I'm also in the UK and have never heard of that. Generally, GP's are very undereducated about this disease & some have never even properly heard of it. 16x3 is the normal long-term maintenance in the UK, surprised the GP responded this way if u have a diagnosis. Maybe a 2nd gp view? You have the right to it in the UK. A ENT put me on 16x3, your right it won't cure it but it helps me at the very least. I'm considering trying an anti-herpes dose, though online pharmacy. Never in a 1000 years will a UK NHS GP agree to this part, at least.
Thanks for the reply, I thought it was dead here for a while. I'm reluctant to go back to the GP about this until I can get back to a few weeks/months of no alcohol, no caffeine and healthy diet (low salt) as it will look like I'm not even trying the basic recommendations. I'm really disheartened lately with the hearing loss in my affected ear, but can't seem to get myself into a Menieres-healthy routine. it's worth checking out the anti-herpes regime. I only came off the acyclovir because a nurse told me that it's not good to take this long-term. I'm a bit gullible in the face of non-experts, I'm realising. However the acyclovir never really reduced the amount of cold sores I get, never sped up the healing of them (nor did the insanely expensive Zovirax) and certainly and conclusively didn't change my Menieres or hearing loss. Best to check it for yourself though.
If you tried the above for two years, including the cold sores tablet I wonder if your disease is a physical issue. Have you looked into TMJ?