Hello and my story

I can’t believe I found a forum that deals with mav. I was on an menieres site for 4 years just because of the support, and my Doc thougth this is what I had at first. I see MetalKeyboard is here also, good to see you again. My life changed in a matter of a day. I was sitting in my livingroom and it hit, I thought I was dying. I got real dizzy and thought I would pass out.

I called 911 and went to the er. They gave me drugs and walked out feeling better. They at the time did not know what I had. My oto Dr thought it was mav right away. I had a hard time believing him and did many searches for other things. I feel he was right all along. I was put on ssd for the panic that controlled my life. I have tired ssri’s but no help, I am sensitive to most things but am willing to try the seizure meds.

I am surprised that at 46 I would develope mav as I haven’t had migraines before. My mother had a bout with them for around 8 mo and they left, she was more the classic type, and I am anything but. But I guess with her that sets up the history for me. Its so good to find a forum that deals with mav, I know many who have this and will send them on over. Hope to get to know you all better.


I wanted to ask a question about hearing loss. I saw Dr Battista in Chicago when I lived there. I had some small hearing loss in my left ear at the time he made his dx. I did read in another paper that hearing loss is not a symptom of mav. But when i read Battista’s he says it can be but does not progress. Now I am confused. He writes that this can happen in Basilar migraine though. Any help on this one?

Hi Charisse

You are not alone in being diagnosed with Menieres. In the past (and in some instances, what ENTs are still used to!),
Menieres was diagnosed based on the presence of some of the following symptoms:

  1. Progressive and/or fluctuating hearing loss
  2. Aural fullness
  3. Tinnitus
  4. Vertigo episodes

Vertigo episodes were always mandatory for diagnosis of Menieres.

However, it has recently been acknowledged that hearing loss is a MANDATORY symptom for the diagnosis of Menieres.
Some people are even still given a garbage diagnosis of ‘atypical menieres’ which is meaningless - Menieres which does not
fit the diagnostic criteria for Menieres! No neurotologist will ever diagnose ‘atypical menieres’. Most of these people
respond to migraine medication if they are eventually led down the correct path.

Sorry, went a bit off track there! But it sure highlights how confusing the difference between migraine and menieres can be.
The treatment is so radically different, too.

The doctor you have seen, Battista is very good. Are you still keeping in touch with him?

If the hearing loss is minor, I wouldn’t worry about it. Hearing loss from Menieres always progresses and can leave
people almost entirely deaf when it has continued for some time. The vertigo attacks usually occur for years,
and then chronic dizziness may develop - but it sounds like you have developed chronic dizziness already. Do you still
have episodes of rom spinning, debilitating vertigo?

It’s true that hearing loss is not a prominent feature of MAV, but minor hearing loss can be found in the normal population,
and in MAV sufferers. The hearing loss of Menieres is quite distinctive, and almost always occurs at particular frequencies first
due to the part of the cochlea the swollen endolymphatic sac compresses. Battista would’ve noted if it seemed like Menieres-type
hearing loss.

Many people are having great success with Topiramate. It is also quite easy to tolerate - the usual side effects are a metallic taste in the mouth and a little tingling in the hands and feet.

Thanks for coming by Charisse, and keep in touch with us!

I have never had true vertigo. Mine is just dizziness. I haven’t kept in touch with Battista since I left Il. I am planning on trying topamax to see how this does. I do have spinal issues also, 2 herniations in my neck and am going to see a neurosurgeon for his opinion. I have had mild hearing loss in one ear from the start but it has not progressed. Its been a long road and I hope to get answers, my life is at a stand still. Thanks for your response.

Not good to hear that your life is at a standstill :frowning:

I hope to hear you have great success with Topamax. If you dose it carefully, it is usually
not too difficult to tolerate, even if you are generally sensitive to meds.


I was planning to start it real slow. It seems to me in order to see if mine is migraine related I must try some meds for this.
My motherinlaw is on Topamax, she gets the killer headaches, and is doing better. I have had a handful of the icepick pain at the base of my skull so I don’t suffer the pain others get each time I flare up. I have been better being on the migraine diet tho and feel it must be migraine if that helped. The Book Heal your Headaches is a good one to read and tells why so many get the wrong dx, when its really migraine. The author works at Johns Hopkins and we have emailed a number of times, hes very nice and knows migraine and the wacky symptoms it can cause. I just have to bite the bullet and try the meds, I’m such a chicken :roll: I can tell you that if one works I will kick myself for waiting so long. I’ll let you know how it goes. i see the Dr this Mon.