Meniere's since 2011-now wonder about MAV

Actually I lost hearing suddenly, in 2008–diagnosed with cochlear hydrops, and that progressed, and finally the vertigo developed in 2011, then diagnosed with Meniere’s and got so bad that in 2012 I had Endolymyphatic shunt surgery in the bad ear.
Since then–no more vertigo! But–some ‘close calls’, meaning I have very bad dizziness daily and on occasion I have felt like the room was about to move and on 2 occasions I was ‘pulled downward’ and had to sit a min. and it passed.
But ‘no more vertigo’!

I’ve had acupuncture treatment, 12 treatments, and that didn’t work! So now I am currently trying a 3 week dosage of anti-virals (reluctantly prescribed by my G.P.) and I seem to be 'more dizzy than ever!

I could not believe I might have MAV, since I don’t have vertigo anymore–and also because I couldn’t believe one could have daily migraine symptoms–like the awful dizziness, sometime with nausea, but not always. Someone on the Meniere’s forum suggested I check out this website.

I cannot tolerate malls for any length of time, and large stores give me big problems, as does trying to sing-like in choir (had to drop out of that) and even the sound of my own voice after a couple of songs makes my head ‘vibrate’ inside, causing more dizziness.
I wear bilateral hearing aids and they have helped–alot! Restaurants are a problem and large groups of folks talking are too.

I rarely have bad headaches–that is why it’s hard to thing I have MAV! I used to suffer badly from migraines–but am in my mid 70’s now–female and those have passed. I do get headaches though–sometimes waking me up during the night and many times after a day of bad dizziness–and take Tylenol only to help with those.
I was told by 2 Neuro doc’s that there is a condition called ‘silent migraine’ where one has all the symptoms of migraine–but the pain.
Is that what MAV is? I also read where Paxil has helped some here–so plan to ask my doctor about that. I’ve tried various anti-depressants due to all this but none have been tolerated. Do take low dose Xanax and that helps me deal with this daily. Only take 2 in a day most of the time.
Would appreciate any one else here commenting as to if this is what they deal with and what has helped them.
I plan to run this by my Ent next month and my GP also. Just do wonder why one would have ‘daily migraines’ when they usually only happened once a month and sometime more often, but rarely when I was younger.
This is long, but needed to get the info correct so hoping to get some good comments, suggestions from those here who have gone thru this. Mother had Meniere’s too–lost her hearing dealt with drop attacks–so have I, but those are now gone!
So, would appreciate any comments anyone has for me. Thanks :slight_smile:

Hi searcher
Diagnosis of Merenier’'s patients who also have MAV is not that rare - possibly makes the diagnosis a bit harder for the docs that’s all.
You do seem to have a lot of symptoms that point to MAV. Many people diagnosed with MAV don’t have any headache - just the dizziness or vertigo or balance issues or many of the other symptoms. One of the criteria is that they or a member of their family has at some point had migraine headaches. Plenty of MAV sufferers do have the headaches and a great variety of different symptoms. If you read through some of the literature (see Dr Silver’s) you will see how much variation there can be.

I had regular migraine headaches throughout my life (monthly, sometimes fortnightly). After menopause they disappeared. I then had Vestibular Neuritis and a year later ‘wham’ the balance and dizziness started. A few months later daily chronic migraine headaches started. Took a year to get a diagnosis and proper med treatment.

Are you able to see a neurologist who specialises in diagnosing/treating Vestibular Migraine? After ‘in depth’ questioning they can often prescribe a med suited to a particular patient’s needs.
There are a lot of meds which can help - but the strength needed, the titration methods and whether two meds together are needed are all issues they would take into account.

Stick with the Valium for the moment - Ativan helped me no end until I got some meds to get things under control. As you will see I’ve tried a few meds but now doing well on Topamax and Lexapro!

Barb, :slight_smile:
Thank you for your response. My goodness–from Australia! I’m learning that MAV doesn’t have to be accompanied by a headache. That is the puzzle because when I had migraines–and I had them for many years–badly–they didn’t come 2 or 3 a month, but usually once a month and sometimes not every month–then sometimes twice in a month!

So, having this awful dizziness/head pressure/ discomfort in large-loud areas like church, strores, restaurants, all the time is such a puzzle. Migraines weren’t ‘all the time’ but came in ‘spurts’!

Part of it is of course the Meniere’s. But since no vertigo is present anymore–I’ve kept searching for something to aid the quality of life altering discomfort this all brings. As I said, I do have mild headaches some days after a difficult day with very bad dizziness, etc. Sometimes I waken with a headache (not a migraine) but a significant one during the night, but in both these cases, they ease fairly quickly with just tylenol! My GP said very likely the headache during the night could be to my blood pressure spiking! That can cause it and I do take b/p meds.

I’m left with the ongoing dizziness and pressure though. Also, tinnitus is there but not nearly as mind blowing as it was for so long! It’s very tolerable right now.

And I have only 30% hearing left in one ear and about 73 % in my good ear, so I wear bilateral hearing aids.

My own voice sounds, at times, like I’m in a well! Singing brings on very much discomfort after only a short time–due to vibration with my own voice! Strange.

I know many have both MAV and Meniere’s. and many take sedatives like Valium, Xanax (I take the low dose xanax) and used to take daily Valium–did not help!

Have tried various anti-dep. and couldn’t tolerate them. Did try Nortryptyline once and that seemed to make me worse!
May ask about Paxil–have read that helps with anxiety, depression, and all this–but causes dizziness too, at first.

Such a journey! Sure hope to find some answers soon. I’m now on my 16th day of Anti-viral meds for the Meniere’s (reluctantly given by my GP) and so far am 'more dizzy. Will give it another 4 days completing 3 weeks and if no better, will stop that. I tried 6 weeks of Acupuncture, no results and took various herbs during that time too. I did 6 weeks of balance therapy, do take Meclizine–but rarely as it seems to just knock me out but does ease ‘somewhat’ the dizziness a bit and the nausea.

I’ve had an MRI–2 times, and both Neuro’s said the same thing–possibly ‘silent migraine syndrome’ and I didn’t know then about MAV! Neither mentioned that name. So, here I am trying for more info to see if an answer or help is still out there somewhere. Thanks for you help. :slight_smile: