I just wanted to post as I’ve been to hell and back with this condition and in the early days I really took a lot of comfort from hearing these stories.
I’ve had chronic MAV 24/7 for nearly 4 years now. However I’ve had vestibular symptoms for 20 years on and off. It started with the odd ‘dizzy spell’ which I spoke to my doctor about. He diagnosed this as symptom of a virus and nothing to worry about. Over the next couple of years I would have more dizzy spells but I ignored this as thought I just had a virus. In about 2008 I started to get what I now know to be rotational vertigo attacks. These were very scary and I took myself off to the docs again. Was advised it was probably a virus again and to drink lots of water. So with this advice in mind I again ignored the attacks.
In 2017 the muck hit the fan. I had been having longer and longer dizzy spells that were now lasting days rather than just 20mins. I was getting really concerned now but the doctors still were adamant that it was a virus. One evening I had what I can only describe as a life changing event. I was sitting talking to my wife and suddenly I had flashes of light In my vision and I stated to have a violent rocking sensation. At the exact same time I had a massive panic attack. A few days later I developed Oscillopsia. I’ve now been dealing with this since 2017
About 18 months ago through this website and others I found Dr Surenthiran in London. I can’t praise him enough. He listened to my story and was in no doubt that I was suffering from MAV. He put me on a medication of 130mg of Nortriptyline. This is quite a high dose but I am 16 stone and 6ft tall. The man had given me my life back. The symptoms haven’t completely gone yet but he is confident that I will make a complete recovery. He is just adjusting my medication so he can add gabapentin. I was only able to see him privately but I can tell you he is worth every penny.
I know I’ve rambled on there but hopefully this will help people who are feeling like there is now way out. You can recover from this. Hang tough.