The Migraine Associated Vertigo Community
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I'M NEW HERE and a bit scared!!

Hi everyone.
I am currently seeing the most renowned ENT in Australia and he is convinced I have MAV. My symptoms started about 15 years ago, with a feeling of fullness in my left ear and an episode of vertigo. This was followed by tinnitus in my left ear. The tinnitus has never gone away. I also have some high frequency hearing loss in my left ear.

Fast forward 15 years and i just had my second bout of vertigo. It is also associated with a feeling of fullness in my left ear and loud tinnitus.

I visited my ENT two days later and the day I visited him I felt fine, just a tad unsteady.
However, over the next days: Thurs, Friday, Sat, Sun: there was a feeling of fullness in left ear again along with muffled hearing and louder tinnitus than usual.
And then last night I drank half bottle red wine! Bad idea.
I woke this morning very early feeling quite dizzy (not true vertigo) and very loud tinnitus. I got up and went for a long slow walk for an hour. Returned feeling fragile and scared.

At noon, I spoke with the receptionist at my ENT’s office and the anxiety of the call saw a wave of dizziness came over me…not true vertigo, but the floor moving under my feet (like on a ship) and I was scared to move my head either way lest it cause a full blown attack of vertigo. My head felt ‘heavy’, unstable. And my tinnitus was loud like a head full of bees. I sat very still staring at a spot on the wall. Closing my eyes made the dizziness worse. I was terrified.

Eventually, I was helped into bed, feeling incredibly drained and fatigued. I fell asleep for 45 minutes.

I awoke feeling a lot more stable (still loud buzzing head of tinnitus), and went for a slow uneventful walk for 30 minutes.

I feel a lot better this evening and even managed dinner.

My ENT phoned me tonight. He believes I have either have Menieres or MAV, but he would put his money on MAV because it is more statistically likely. This is interesting, considering I would class myself as quite photophobic and phonophobic.

However, I have unilateral low and high frequency hearing loss, coupled with a severe anxiety disorder.

I have never had a migraine headache that I can recall, however I do get these non-headache migraines that present as aura (staircase of light).

My ENT believes whether it’s menieres or MAV, getting my anxiety under control is the key.

Any thoughts?

Stephen

Hi Stephen and welcome. So sorry you are suffering. And equally sorry it has gone on so long without diagnosis.

My main and at this point only thought to offer is that you need to obtain an accurate diagnosis. That is your way forwards. I appreciate that that will prove difficult in the current Coronavirus situation but that is what you need to push for.

There is nobody medical on here who can diagnose you. I understand Menieres is usually relatively easy to diagnose or eliminate. Personally I had it eliminated very early on in my case following hearing tests.
It seemed most ENT consultants could tell me I didn’t have it even though they could not tell me what I was suffering from! A neuro otologist would be best bet for MAV issues.

It now looks as if Coronavirus is here to stay long term so it shouldn’t be too long now before more normal, non Coronavirus medicine resumes in some form so I suggest you start making some enquiries.

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Thanks
I am having a hearing test today.
Will report back

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Sounds good to me. No pun intended! A step in the right direction. Once you have a more definite idea of the problem the path forwards will be so much clearer

Hi Steven,

Sure sounds like either MAV or meineres. Keep us posted how the testing / treatment is going. The anxiety component of these conditions is real difficult, but you are in good company here we have all traversed similar paths…

take care, hope you start feeling better soon,

Erik

Well my hearing test showed both a bit of high and a bit of low frequency hearing loss in my left ear, but I’ve since discovered that MAV CAN actually cause hearing loss! Who’d have thought that?
My MRI was totally clear.
My ENT convinced it’s MAV. I never have true vertigo, more imbalance and dizziness when I move my head.

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did he offer any treatment? That might also be able to help discern whether is one or the other.