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10 years in with MAV


Not sure what to say but an a guy at 33 you has been dealing with this since I was 23.
I was suffering with what I thought was sinus pain for years and basically was about to have an operation and it reached a point where it all most have git too much and one day in gym I just felt horrendousmy dizzy.
Initially I passed around ENT departments and even saw Pr Luxon in London, all telling it was labrinitous and not compensated so went through hell for years but I continued working, got married in 2012 where I was happier and so the dizziness eased slightly but I 2013 I was horrendous again and broke down. Through a friend of friend I heard of Dr S and saw him 3.5 years ago now. He suggested MAV and through diet and massive trial and error with Nortriptyline life has got better where I have had months at 80-90% but still have my bad times.
Around 45mgs seems to be my dose.
I now have 18month old boy which as anyone with children knows is tough especially the sleep but he is amazing
Now recently and today I am rock bottom with the worse migraine ever from nowhere, sweating so much, feeling sick and also panic attacks…
Recent months I have getting worse again even though I’m still on 45mgs and gone back to a strict diet again.
I did go up to 50mgs late week an I am taking an it biotics for some trouble with water works that started from a strange water infaction last Oct that has left me with some issues

Has anyone been made to feel worse for taking penicillin/ antibiotics?

I have been to see Dr S a few times since but the last time was March 2016 where he put me in gabpentin and then Pizotren along with my normal nortripine but I just couldn’t get better with them and just went back to 45mgs.

Sorry for the long rant that doenst make any sense, I’m just so lost again after 10 years of this and I know feeling down and depressed makes me worse but today if feel the worst ever.


That sucks, Dan. Sounds like you need to seek additional opinions. I’d say you might have Secondary Hydrops due to a physical injury (barotrauma?) set off by the sinus issues, but you’d best see an expert. There has to be a related reason, you don’t just develop this crap from nowhere! Happy to recommend my ENT by PM if you are in or near London, UK.


Thank you for the reply.

It’s just so difficult to understand how to control this symptoms and what sets them off. I know I’m not the only one.

Aftrr reading through my diary I’m going to drop back down to 40mgs as seems to be when I’m. At my best, as I did up it to 50mgs last week which may set all if this off. I’m also go to try gabapentin again 2 x 100mgs, if I can get an appointment with my doctor anytime soon.

I’m reasonably confident that my sinus issues with in fact migraines as they have eased since taking nortriptyline and diet.
I’ll look up hydrops though.

I’m from Bristoland travelling a lot for work, around London and the South East, so I normal fit in a visit with Dr S when I’m over that way.


Best of luck with change of dose, Dan.


You asked about antibiotics - yes, they can make you worse. My MAV kicked off from mild imbalance to full vertigo with all the works while i was taking metronizadole for a gut infection.
i don’t believe the antibiotics ‘caused’ the MAV as i was already having some dizziness symptoms, but it was a bit like pouring petrol onto it - whoosh.

antibiotics can cause gut issues and headaches - both of which are known triggers of MAV.

i know it is hard when you are at rock bottom - but try to stay positive. you have a bad condition, but despite that you have managed to start a family etc - which is fantastic.

there are lots of diseases out there that are much, much worse. MAV does make you feel like *#@t much of the time, and it can be hard to keep smiling.

Have you tried CBT (cognitive behavioural therapy) for the panic attacks? it really does help. you can get CBT sessions on the NHS or privately, and you can also read about it online. it basically gives you different ways to deal with unpleasant situations or symptoms. the anxiety is something you CAN get rid of, even if the MAV itself is hard to shake off.


Hello, I’m back again.

After the above last summer and trying it be medication again on top of nortriptyline, I settled back down to 45mgs alone. Around September last year I started feeling better about 90% most of the time after a bad summer and up until two weeks ago, where I have been hit with a relapse again. Huge head pressure and pain around my head and just feeling dizzy and disoriented. I’ve been much worst with rocking add spinning sensations when resting and falling sensations.
Like most I’m trying to figure out what’s caused it…
I’m still on 45mgs but I have been able to get away with some foods, like chocolate and fresh bread etc for months.

Me and wife separated I’m January but we are trying to sort things out and have been been for a couple of months but until now going through this stress I’ve been ok.
I’m guessing the recent change in the warm weather may have added the food etc buy I was fine during the hot weather at the beginning of this month.

I am thankful for the good period I’ve add but when it comes back like this it’s harder to deal with again.

I’m sorry to ramble on but I’m just lost again of what to do and if there was anything else I could try on top of Nortriptyline. I’m going to try and speak to Dr Surentirian’s Secretary tomorrow and see if there anything else I can try?


@gidlabu is a Dr.S patient and he does relatively well on the pizotifen + gabapentin combo…something you might want to try to add slowly…and drop down on the nort slowly


I have tried both if these on their own with Nort but neither helped. Well I think 2x100mgs of Gaba helped for a couple of weeks.