New to MD and trying to come to grips with it

Hi all,

First off this is going to be a long one....hope you can hang there to give me some advice!

Few things to go over first. I am 33 years old and live in New Zealand some of our meds are named different to the US version but are the same thing.

I have recently been diagnosed with suspected MD by my ENT(onto my fourth ENT who actually gave me more than 5 mins of their time). I was meant to have my MRI tomorrow to confirm this but we are back in lockdown here in NZ so my appointment was cancelled and apparently MD doesnt qualify as "essential".

I have always suffered from hyperacusis in my left ear after a bad drum rupture in 2004. But it never bothered me other than discomfort in loud environments. Fast forward to 2009 where i started to get the sensation of being on a boat and i went to neurologist for this who said nothing is wrong and basically shrugged his shoulders on what to do next. That resolved on its own, and i only used to get ear fullness and slight balance issues for a day or 2 after loud sound effecting my hyperacusis then it would be back to normal so nothing to worry about and i knew what to expect.

July 2021 its come back with a vengeance and a constant feeling of ear fullness and pressure(blocked from being on a plane feeling) which never goes away its 24/7. I am feeling like i am rocking/on a boat 24/7 with what i would consider mild tinnitus after reading other posts here on what other peoples tinnitus is like. Sometimes i wake in the night to go to the bathroom and then upon returning back to bed and closing my eyes get dizziness and horizontal vertigo this has happened 3 times in the last 2 weeks so not very common.

I have been prescribed betahistine by my ENT which I take 4 tablets 3 times a day. i have been doing this for 18 days now and so far ive had mixed response, somedays feel no rocking but still tinnitus and then today for example im all symptoms back. My ENT told me that if 4 pills 3 times a day doesnt work then i just keep upping the dose to 5x5x5, 6x6x6 etc. until it clears my ear of fluid and returns me to relative normality.

What is the experience of other MD sufferers with Betahistine? and whats your dosage looking like?

After seeing people have success on AV's i can also say that last year i went on a 3 month cycle of Lovir(aciclovir) 400mg twice a day for a stubborn cold sore that wouldnt go away with over the counter remedies and i was great for 6 months or more last year even with the hyperacusis. So i am wondering if i should go back on this?

I have taken notes on AV supplements everybody has recommended so i am wanting to give that a go as well

Can i just say thank you to all the active members on here, knowing there are others battling the same disease and providing information on their experience and procedures etc. is really amazing for people like myself who are new to this and still researching.

 

Thanks for your reply, to be honest I was really down in the dumps a week ago as the ENTs I have been to havent been much help and before finding this forum everything I read is doom and gloom. But after reading several threads on different supplementation regimens like JOH which I only found last night on John's thread(thanks John) and success people have had even if it was for short bursts its given me hope. I have a young family with another due in December so it puts a lot of pressure on my wife and my kids dont understand why all of sudden dad has gone from being very active with them to almost a recluse. I dont want to miss out on them growing up so I gather a lot of supplementation regime is trial and error so I need to get started on JOH and start figuring this thing out.