MAV enquiry

Hello all
My name is Mandy and I am new to this site.
I have still to this day not been diagonised for my dizziness after 14 months.
ALL my tests have come back clear.
The specialists are all shaking their head as they are baffled on what is wrong with me.
They are now guessing that I have migrane associated vertigo.

They want me to trial meds but I am very hesitant on this especially seeing they are guessing.

I need advise or more symptoms of this mav please.

Thanking in advance xxx

Hi Mandy,

What tests have you had? What are your symptoms?


Hi Bella

I have had every testing under the sun.
MRI, cat scan, googles that test all ear canals. all the testing of the ears with the electrolodes and googles…hearing tests came back to hearing loss in both ears.
I have a rocking sensation now.
At the beginning I believed it was labs and bppv…bppv went but I believe the labs stayed.
Have had constant dry lips, 9 flus, glandular fever and chronic fatigue in 14 months.
Very much more dizzy when doing anything on the left side.
I just cannot believe it is still hanging around…constant boat rocking sensation, made worse after driving and walking.
They are all guessing now and saying that labs can turn into migrane associated vertigo :frowning:

I get rocking too and i’ve been diagnosed with MAV. A rocking sensation is definitely quite common with MAV, and sufferers are more prone to BPPV too. As far as I know hearing loss is not usually caused by MAV but I am not sure. Labyrinthitis can cause hearing loss but usually only in one ear. Infections like flu are not related to MAV but can make symptoms worse. Your doctors are right that it seems labyrinthitis can trigger MAV, see the migraine survival guide in general discussion for some more information. Sorry to hear that you’ve been suffering for so long without a diagnosis but I think your doctors suspicions are right. A MAV diagnosis can be hard to get your head around but don’t worry, it is treatable and most go on to live a normal life again once they’ve found the right medication/ lifstyle modification.

Hi Mandy,

What you have definitely sounds like it could be migraine-associate vertigo, so trialing medication might not be a bad idea. That’s how I was essentially diagnosed with MAV personally, as I trialed Topamax (which I’m currently still on, and has gotten my life back on track) and ended up diagnosing me. I had rocking 24/7 like you, along with vertigo, and I too had hearing loss. Sometimes I would actually go deaf in one ear, and my neurotologist ended up doing hearing tests on me which show hearing loss which may be permanent, may be temporary. He finds in his practice here in Chicago that patients with MAV tend to have hearing loss, commonly in both ears as opposed to one ear (which is common for Meniere’s disease).

Topamax ended up taking me from being dizzy 24/7 and unable to work, popping anti-nausea medication every day, barely able to walk, and feeling like I was in a constant dream-like state to where I am now. Currently I can go for maybe a month or so without having any dizzy days and if I do, its for a few days or so around my period. I still have mild headaches on a daily basis, but I’m working with my neurotologist to try some other alternate therapies to try to take my 90% relief and bring that percentage up even further.

Other things you could try is cutting out dietary triggers like caffeine, nitrates, msg, alcohol, etc. and keep a diary of your symptoms. I found a few for me (caffeine and nitrates specifically) were extremely important to remove but the others less so. This could also help you and is an alternative to medication if you’re nervous.

Good luck!

I was wondering how you have been feeling. I was dx in Dec 2013 with MAV. My symptoms are dizziness, especially in busy environments and with loud noise and lots going on. I noticed some more head and neck stiffness. I tried driving today and noticed that the head and neck feel lots of pressure and it is very difficult. I really miss being able to drive normally. This was the first time I tried driving for months. I thought I was getting better last summer, but it hit me very badly in Sept last year. We were in a grocery store and I felt so out of it. Like I was not there, almost like a dream world or out of body feeling. It really freaked me out and scared me. I have pressure on both sides of the head above my ears. Also, stress now seems to make me for more disoriented and frustrated and feeling dizzy now. All this started 10 weeks after I gave birth and right after a sinus infection

I have not been driving and tried to today. It was only a few miles and I use to drive all over the place. :frowning:

I am taking klonopin and I really want off of that because I do not want to become addicted or have any problems with it. May I ask what your symptoms are and what medicine has helped you?

Also, my ENG showed 25% vestibular loss but the neurotologist said that would not be the reason of my problems. Can you give me any information? Thank you so much for your time.