Diagnosed MAV after 4 months

Hi everyone,
Sorry this maybe a little long, but i am looking for others with a similar history :slight_smile:
As the title suggests i am new to the forum and just Dx MAV.
My Hx is not a straight forward one. I am a 34yo male. I have had constant dizziness and imbalance to a varying degree over the last 4 months after initially waking with hearing loss, tinnitus and severe vertigo. I have had numerous vertigo attacks that can last from seconds to 5 days. Sitting in front of the PC can at times set it off, as can driving. Sometimes the commencement of the vertigo can appear to be positional, other times not. I have also had aural fullness, tinnitus and increasing hearing loss to the point where i am now totally deaf in my right ear after only 4 months :frowning: During this time I have not had any headaches.
I have had a number of caloric tests, Ecog, MRI with and without gallium, CT of the affected ear etc.
The last attack i had was VERY severe and i ended up in hospital for 4 days with constant nystagmus / rotational vertigo, vomiting etc. It did not respond to high doses of stemetil to settle the vertigo. It has gradually settled but i remain very off balance and dizzy with head movements 3 weeks later.

At first my GP thought it was Labyrinthitis. After it didn’t settle after 8 weeks i went and saw an ENT who thought it was uncompensated Labs. It did not resolve and the attacks continued in varying degrees. I and my GP thought i must have Meniere’s, even though it is not behaving like classic Menieres as i have not once recovered fully after an attack and have remained dizzy.

After the major attack 3 weeks ago, i was flown to Brisbane (Australia) for a second opinion. The second ENT said it had traits of Meniere’s but it was not classic of Menieres. After a discussion with Prof Halmagyi in Sydney, he requested i fly down to see him and also a Meniere’s expert in Sydney by the name of Prof Gibson.
Prof Gibson advised that it could not be Menieres given total hearing loss in 4 months and no evidence of full recovery between attacks. He also did a needle Ecog and stated i had normal inner ear pressure in my affected ear.

I then saw Prof Halmagyi the next day, after more caloric, VEMP testing etc. Prof Halmagyi did some manual testing him self of head turning, head thrust etc, family Hx (Strong family Hx of Migraine, I had symptoms of migraine as a child, abdominal migraine, IBS, severe motion sickness) he stated that my problem is caused by vestibular migraine.
I am already on Dothep for sleep and did start Verapamil which was started to see if it would help. Prof Halmagyi is arranging for me to start on Cinnarizine.

Has anyone else experienced total or drastic hearing loss in a short period in relation to Migraine? I have been doing some reading and though not common it appears it can occur with vestibular migraine.

Also what meds have worked for everyone out there and what hasn’t?

Many thanks

Hi and welcome,

If it’s any reassurance when I saw Halmagyi and co last week and discussed the hearing loss (as well as the fullness, pain, muffled sensation) they all assured me that in their clinic they see these symptoms all the time with migraine. With your own history and your family history plus all the tests you had (and seeing two top dizzy docs) I’d say you can be assured that they have diagnosed you correctly.

So the question then becomes, how to treat it? Other than the meds they’ve got you on try all the lifestyle stuff you can. The diet stuff is very hard (and Halmagyi is not a big believer in it) but all the other things, like getting a regular sleep schedule, moderate exercise etc are all quite achievable. Try and eliminate any triggers you can identify. Also, be patient. Unfortunately chronic episodes like you’re experiencing (especially when they are so extreme) don’t usually go away overnight, it’s usually pretty gradual.

Hang in there and good luck!

Thanks Vic :slight_smile:
I am hoping that the Dx is finally right, i have had a few different ones over the past 4 months but Prof Halmagyi seemed very confident especially given my Hx and my family Hx of migraine and that Prof Gibson said it was not Menieres. Nothing else has worked for it either eg: low salt diet (kept below 1000mg a day), no alcohol, don’t smoke, diazide 50mg (duiretic).
I am already on prothiaden for sleep (been on this for over a year prior to getting unwell) and my GP decided to try Verapamil to see if it would help with the dizziness and bring my BP down which has been up since i stopped exercising after getting sick (Prof felt Verapamil was not a good choice in his books anyway). After 4 months i am so keen to try and get it under control, especially given the severe vertigo attacks i get that can last for days ( i assume there are others out there that get these severe attacks as well?)
I will probably be bombed to the hilt mixing the cinnarizine with the dothiepin. Am also keen to try an anti-epileptic eg: Na+ Valproate or similar if it will help as well.

Hi T,

Welcome and very glad to hear you’ve had some good specialists check you out. I too have seen both Gibson for an MM check in 2003 and Halmagyi. I’ve had sporadic hearing loss that was short lived (only happened twice). It returned within 6 hours.

My case is 100% migrainous in nature. Keep us informed if you can about the Cinnarizine treatment. Your case and Vic’s make for very good case studies showing how easily people are misdiagnosed with MM when hearing loss is involved. If you just take a look over at the Menieres forum there’s a whole bunch there who have been misdiagnosed.

Cheers S

Hey Scott,
cheers for the welcome buddy :slight_smile:
Just really want to get these bad attacks under control. Spinning for 4 days straight (nystagmus and floor shifting) was not pleasant :frowning:
To be honest it appears very individual as to how quickly people get their symptoms to settle (and for how long). Hope there are some good stories out there too!