HI, I'm a long time MAV sufferer that has recently relapsed

Hello all,
I’m new here , although I was a member back in 2012. I’m a 41 wife and mother of two girls. I was diagnosed with MAV in 2011.

My first MAV episode happened when I had been visiting a friend for her b day, we had stayed up late drinking port, I then got on the train to travel home and I was hit by a wave of sudden dizziness and nausea. It didn’t go away. My GP initially thought I had an inner ear infection but when it didn’t go away he referred me to see an ENT. I saw Mr Selvadurai at the Lister hospital in London, he diagnosed me with MAV. I started following a migraine lifestyle and I also took pizotifen. It took about a year but eventually I was stable and no longer dizzy all the time.

Over the years I have continued to follow a migraine lifestyle. I don’t consume caffeine, I don’t drink alcohol, I am careful how much chocolate I consume and I have to be careful with train and car journeys. Of course I have still suffered with migraines and vertigo but for the most part I know how to get things back under control. My MAV didn’t have any pain associated with it when I was first diagnosed but now I do get pain also.

So that’s the history. Fast forward to August 2023. I decided to have laser eye surgery. The first two weeks after surgery were ok, I couldn’t see that well but my eyes were healing. Then at the two week mark my eye sight improved but I was walking down the high street one day and I was hit by a wave of vertigo and that’s how I’ve been ever since.

The last 2.5 months have been hell, daily migraines, constant vertigo and I can’t get myself below my threshold. I usually know what to do (and what not to do), but I have completely lost control. The eye clinic say I need to give it 6 months for my eyes to stabilise. The GP has put me on propranolol (80mg a day).

I feel so frustrated that I have paid to be in so much pain! I’m angry with myself for not thinking that this might happen. I suppose over the years I’ve become so used to living with MAV that I didn’t think this could happen again. I only work 3 days a week but I’m struggling with that atm, I’m unable to look after my kids properly as I keep having to go to bed - over all it’s not a good time!


So sorry to hear that you are suffering again - it is such a debilitating thing to have and it is never clear when things are going to improve. Have you thought about asking for a referral to a neuro-otologist? I am not sure if that would help, but it is maybe worth a try. It almost seems like your brain is unable to cope with what your improved eyesight is seeing and has gone into a meltdown - I am not a medic so this might be a daft idea. If the Pizotifen helped before do you think it might help this time? I was on Pizotifen and it took about 6 months for my head to calm down, but I got there eventually. I saw Dr Surenthiran (neuro-otologist in London) privately and was so glad that I did.

Hi, thanks for replying :slight_smile: Yeah I agree that it is my brain that’s struggling to compute what’s going on - the optometrist has confirmed this also. The Propranolol has helped a lot but i’m getting really bad insomnia so i’m exhausted! I’ve tried cutting down to 40mg (from 80mg) and taking it in the morning but it hasn’t made any difference to my sleep and i’m waking up dizzy again each morning. I think i’ve decided I will ask my GP for Pitzotifen on Monday. TBH i don’t feel that I need to see a neuro-otologist as I’m still in contact with the specialist that treated me for MAV in 2012 and I could get an appointment with him if i need it. I just want to see if a combo of the migraine diet and Pitzotifen will work first.

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Hi! I am sorry, I feel that my eyes are so important for my stability. I try daily exercises, just looking at a pen and following the movement: up and down, left and right, far and close to me. 2-3 minutes of exercise. Could you ask your eye doctor if this is ok for you since you recently had surgery? For some reason this simple exercise helps my eyes and head. I don’t suffer spontaneous vertigo, mostly positional, so if I don’t turn my head to the left I am ok. That said, my head is not normal. It is difficult to explain, but even if my condition is mild I am 70% ok.

Torthelaw - I’m so sorry you’re experiencing a major relapse. I can relate – my journey sounds similar to yours. My vestibular system blew up ten years ago after many years of undiagnosed/misdiagnosed problems and I was very ill for quite a long time until finally finding the right doctor and drugs. Since then, like you, I have lived a “migraine lifestyle” – no caffeine or alcohol, regular schedule, calm lifestyle, rescue drugs as needed – very cautious and careful. Then, after eight years of relative stability my brain suddenly went haywire again last April but in my case there was no obvious trigger. One day I was fine and the next days/weeks/months I was once again very ill.

What’s interesting to me about your situation is I had cataract surgery a few years ago (both eyes two weeks apart) and had no problem at all. I was very concerned about the impact surgery might have on my vestibular system, particularly since I’ve been a high myop my entire life and the vision change post-surgery was huge. But unlike you my worry turned out to be unwarranted.

On the other hand, with this most recent trip down the vestibular rabbit hole, one of the unexpected challenges has been problems with all of my senses including my vision. I’m working with a specialist eye doc to find glasses that I can manage and a therapist to try to stabilize my vision.

What does all of this prove? I have no idea. This miserable condition is so unpredictable and so cruel that I’ve come to the conclusion that there’s no figuring it out. Don’t blame yourself for your latest relapse. How could you reasonably know how your migraine brain would react to a routine surgical procedure? Why was my experience different than yours? If it wasn’t your eye surgery it could have been something else, or nothing else at all. Who knows? It just stinks! I hope you find your way back to stability quickly, my fellow traveler.

Thank you for this suggestion, I will ask the Dr at my next appointment. I think it would be fine though.

It is such a strange and unexpected illness isn’t it?! Sorry to hear you are struggling too.

I started on Pitzotifen last night and i feel awful today, I’m trying to work but I can hardly keep my eyes open. I did sleep well last night though! I can’t decide what’s worse, the insomnia from Propranolol or this groggy feeling. I can’t remember whether this feeling wore off last time I took Pitzotifen. I think it must have done, I can’t think that I would have coped like this for 4 months. Also, I am incredibly hungry today. I really am so worried about how much weight i’m going to put on.

Hi there, just popped back on here and read your post. How is everything going now? You have described my worst nightmare, this coming back like this. I was on pizotifen and the grogginess settles relatively quickly. It really helped me. Your experience with propranolol sounds very similar to me too. I actually couldn’t hack the side effects, the physical exhaustion and insomnia, not to mention depression was awful.

I’m 41 in a few months. I wonder if a change in hormones are to blame or whether it was the eye surgery. Whatever it was, I really hope things have improved.

I suspect men and women have different underlying etiologies of this disease.

for women, its more of a metabolic/hormonal disease that heavily involves mitochondrial dysfunction.

for men it seems more epilepsy-like, like a channelopathy