MAV maybe?

Specific Illnesses & Conditions VM/MAV
1

I’m really hoping y’all can help me out a bit. I’m trying to figure out what is ailing me. In june of last year I had a horrific episode of vertigo. Lasted for a good day and was accompanied by nausea, bowel ick, a general off feeling, fullness in my left ear, headache, etc. Left me totally wiped out. Some vision wackiness, but I’m not sure if it would be considered aura or not (like I can’t open my eyes all the way, vision kind of off, left eye feels more on task than right, and like I can’t focus quite right). Took me almost 8 weeks to fully recover. Tried steroids, meclazine, lo-sodium diet, diuretic, etc. ENT diagnosed me with Menieres.

In December, I had a more mild but similar episode so I went to see a neurotologist. Ended up doing a full ENG. Some signs of weakened balance response/vetstibular loss on my left side, but nothing that shrieked Menieres or BPPV as a solid diagnosis. Hearing 100% ok. They did the testing in stages - if you respond appropriately we’ll move forward with testing. So things were amiss along the way, but not enough to point solidly to one thing.

Neuro felt the Menieres diagnosis was incorrect. He thought it might have been a vestibular illness that was taking a long time to heal or possibly MAV.

Huge family history of migraines - mom since she was 3 y/o has them weekly and takes Imitrex, her mom gets occular migraines with aura, brother gets migraines and I get one or two per year (the all I want to do is lie still in a cold dark room until my head stops throbbing kind).

Yesterday I started into yet another ugly epsiode with vertigo and all. Same symptoms as last June. Roughly the same point in my menstrual cycle as well (right around ovulation) - I’m not sure if there is hormonal aspect to migraines or not. Allergy seaon too. And stormy which means wild swings in atmospheric pressure.

I feel like crud. It is like a nasty hangover. I can’t walk straight. I still feel sick to my stomach on and off. My vision is wacky. Ear still feels full. And I’m physically wiped out. I don’t have a headache, but my head doesn’t feel normal. I’m spacey and very forgetful. Can’t seem to focus with a darn on anything.

I’m frustrated. I would feel so much better and more in control if I could get a firm diagnosis of what this stuff is. Something is clearly amiss and if it is something I can help prevent I want to do that! I really dislike feeling so incredibly wiped out and helpless.

Any suggestions are welcome. I’ll be talking to my dr tomorrow and suggestions for questions, information I should pass on to him, etc would be welcome.

TIA.

2

Hi piper

Nice to meet you!

It is disconcerting to hear that some ENTs are still diagnosing Menieres without evidence of hearing loss. It has been quite some time that the American Academy of Otolaryngology stipulated that hearing loss is a requirement for the diagnosis of Menieres. I guess this reflects the fact that many ENTs still do not diagnose migrainous vertigo nor believe in its existence, and are happy to continue diagnosing people with whatever fits closest in the spectrum of peripheral disorders. No neurotologist would ever diagnose anyone with Menieres without audiometric evidence of hearing loss.

Your neuro sounds like they are on the ball.

The things that support a diagnosis of migraine are:

  • Lack of hearing loss
  • Very strong family history (that’s quite an extensive family history)
  • Your own history of migraine
  • Recurrency of attacks (ie. not a one-off acute event that VN is, followed by a compensation period)
  • MAV is the only illness that causes vestibular symptoms that is affected by hormonal changes (ie. same point in the cycle, as you have mentioned). This is just an obvious extension of what occurs in regular migraine.
  • You fit the largest demographic of MAV sufferers - women in their 30’s.

You are on the right track… I would continue to see your neuro if you can.

There are plenty of medications that can help - I’m sure you’ve already done some reading on this.

Given that your episodes of vertigo are coinciding with hormonal changes, it seems unlikely you’d be able to control your symptoms with dietary and lifestyle changes, so you will most likely need to take preventative medication. This can be quite successful though.

Let us know how you go!

Adam

3

Adam -

Thank you so much for your post. I was very put off my the ENT I saw last year. He diagnosed Menieres based purely on my verbal account - no testing (other than a hearing test that showed no loss) whatsoever. Hence the reason I sought the appointement with the neurotologist.

— Begin quote from ____

  • Very strong family history (that’s quite an extensive family history)

— End quote

I know, we all get them. And they all present differently too - to a degree. Grandma with her occular w/aura, Mom with classic and I think she gets aura too, brother with classic, me with classic and possibly MAV. Methinks migraines might have just a little to do with genetics.

I can’t thank you enough for clarifying things for me - I don’t know it is easier to belive if someone else substaniates it I guess.

Just talked to my general practioners nurse. She’s going to discuss it with my dr and get back to me as to what the next step will be. I’ve still got a funky hangover-ish headache, nausea, lightheaded feeling. Hopefully they’ll suggest a course of action and I can get this thing all sorted out and feel well again.

And thank you for setting up this forum - I have a feeling it will be very helpful to me. :smiley: