Hi everyone,

I won’t go over the 20 years of ‘it could be this’ ‘it could be that’ diagnosis the doc keep throwing at me, instead my question is a short one…

How much does tinnitus affects MAV sufferers?

I’m in the process of being sent down the MAV road, after many years as a ‘Menieres’ patient. However I get horrendous tinnitus, is this common with MAV, I don’t get the connection between neural networks and ringing in he ear?

Great board, most enlightening, thank you all contributors.

Yes I always have it and sometimes it’s much worse. Total MAV symptom

— Begin quote from “leshurd”

Yes I always have it and sometimes it’s much worse. Total MAV symptom

— End quote

ditto here

Me too. It’s worse when I go up on the Topamax or when I’m having bad days.

Mary Lee

— Begin quote from “Taz”

I don’t get the connection between neural networks and ringing in he ear?

— End quote

It’s my understanding that it’s not about neural networks, it’s about the vestibular system.
The vestibular system is affected in some migrainers. (In particular, ALL of us here who present with vestibular symptoms)

I never had tinnitus until the day I experienced sudden vertigo. Since that day it has been very loud and has never gone away.
It is very much a REAL MAV symptom.

Thank you all for your posts, it’s great to have websites like this, and helpful and compassionate users to put ones mind at rest, and further ones knowledge of the condition.

So the meds don’t help to reduce the tinnitus, in fact they can aggravate it?

This tinnitus is driving me crazy as much as the condition itself, and its constant tinnitus, from the moment I close my eyes at night, to the second I open them in the morning.

I always considered migraines to be something that was sparked, but this constant tinnitus has no trigger, it’s always there :frowning:

I’ve just realised I’ve posted this thread probably not in the best category, sorry :smiley:

I PROMISE you Taz, that you will find it easier to cope with the tinnitus as time goes on. You WILL get used to it and not notice it as much I promise.

When I first got hit with this, tinnitus was probably my second biggest bug bear to not being able to walk in a straight line. I thought it would literally send me insane, I googled endlessly to try to find a cure, and I simply did not believe anyone who told me that I would get used to it… But I did. I used to sleep with a fan on all night, for the first 6 or 7 months. One day I forgot, and then I realised I could cope without it.

I do notice it when I’m in bed or it’s quiet in the car or something, but I think the brain somehow learns to deal and cope with it and filter it out for you in a way, even if you consciously know its there.

If you can, I would try to mask the noise for a while, and with time, take that noise away and see if you can cope a little better. Try a fan pointing the wrong way if you don’t want to get cold, or perhaps you have an en-suite bathroom with an extractor fan that buzzes for 15mins once you turn the light out- that’s what mine does so I had a 15min window to fall asleep :slight_smile:

Oh yea, been a problem for years, the docs will tell you lowering salt will help…makes no improvement for me.
Stay way from or use ear plugs around loud music and noises or it will get worse for a while.
I always try to have music on or some noise distraction, this helps a lot.

I get pulsating tinnitus, it is awful!

Best wishes to you in your journey to get well!!

My tinnitus started after the MAV, but I’ve gotten used to it. At first it drove me insane and I couldn’t even handle going to work; now I rarely notice it, until I do. My recent hearing tests were good with no additional or significant hearing loss. However, my noise sensitivity has made going to the movies intolerable. I’ve been eyeing “Earasers,” ear plugs that don’t block the ear entirely, but help filter the sound. I’ll do anything to keep my life as normal as possible and I love concerts, live theater, and movies. Has this helped any of you?