Almost there

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.


Thanks for your story. It’s great you are getting relief. I’m another long term MAV’er who was misdiagnosed for decades. I hope you continue to improve.

Thank you for sharing your story, I am planning to take appointment with the same doctor. I am so happy for you and I hope you reach 100%