Meniere's sufferer new to MAV and in need of advice

Hi there,
Hope you’re all feeling well tonight, and hoping that someone can offer some advice.
I have been suffering with unilateral Meniere’s Disease for the past 6+ years (debilitating vertigo,tinnitus, moderate hearing loss in affected ear).I recently had the vestibular nerve section surgery. Was feeling great for several weeks without vertigo or dizziness, but recently migraines have started, and I’m worried that the VNS brought on MAV. My current symptoms are:
Bowling ball/heavy head feeling
Rocking sensation
Feeling like I’m being pushed or pulled down, though I don’t fall
Visual disturbances
One pupil becomes larger than another during episodes
Head pain or sinus pressure
General “off” feeling

I have the book Heal Your Headaches, and have followed the elimination diet for some time now. Wondering about medications or other forms of treatment that have helped others on here. I’ve tried migraine preventatives, without much help. Thinking I need to try something else. Not sure where to begin, as I’ve read about so many different types of medications available. I’m sure that it will be a process of trial and error, but is there a common starting point? Is there a “tried and true” med that works for many? I’ve been bed ridden for three days with these awful symptoms, feeling as though vertigo is just around the corner.

Any info or input is greatly appreciated. Thank you new friends.

Hi there. We know each other from the other forum (Spark :wink: ). Maybe I didn’t read your personal message close enough, sorry. This (what you wrote) is pretty much what I feel like. For some reason today, I actually do have a pretty rocking headache, on the same side as the ear that has been plugged up. I always feel like I am rocking to some degree. Sometimes it is barely noticeable. Sometimes, it makes me nauseas. I am up to 30 mg. of nortriptylene now, and it seems to be working pretty well. Plus, I do follow the diet pretty strictly, along with the lifestyle advice. I wouldn’t worry too much, I have had these symptoms on and off for years, and I have never had the kind of vertigo that you described with your meniere’s. The most i would get are 3 second quick spins, and although unpleasant for sure, they do not compare to hours of vertigo.

Get some rest and relaxation! I hope that you feel better soon!

Hello my darling Spark,
Thanks for the input. Just concerned that the VNS may have brought on MAV, as I’ve heard that can happen. Never felt like this before surgery. Isn’t pleasant, but today seems to be a bit better.

I’m going to talk with my doc about MAV, but not sure about what meds to discuss. Will try to read through this board more thoroughly. Thanks for checking in with me. :slight_smile:


Hi, if this is who I think it is (s–e) then I am sorry to hear that you are still suffering after your VNS. I had such high hopes for you.

I hope you find an answer here.

I’m from the other board too. (CarolineJ.)

hey bowie girl,
i’m from the other board too (wileyriley). sorry you are now having additional problems. i’m guessing at who you are on the other board too :wink: but whoever you are, i hope you find relief soon. i’ve not had the vns and do not have a diagnosis of mav. i can say that i currently have a lot of the symptoms that you are describing-

Bowling ball/heavy head feeling
Rocking sensation
Feeling like I’m being pushed or pulled down, though I don’t fall
General “off” feeling

i just had a gent injection 5 days ago and assumed this was part of the compensation process. i wonder if that’s part of it for you. however, the other symptoms you have (different sized pupils, etc. ) throw me off. wish i could be of more help. i hope you feel better soon!


Hi fellow friends,
Yes, it’s me. :slight_smile:

Have to say, things have gotten better, though haven’t gone away fully. Some days I have just one or two of the symptoms, other days, none, other days more than a couple. I haven’t yet had vertigo, which is great, and no true dizziness. I’m counting my blessings, and still happy that I had the VNS. I was practically living on the bathroom floor before surgery.

At least now, I can function. Over the past few days, I’ve been able to get out and about and spend time with family. I’m not sure if this is all part of the compensation process, or if it’s something more. Going to visit a MAV specialist to see if she has any answers.

Anyway, thanks for checking in and for the nice messages.

Hugs to you,

Hey Bowie Girl!
It’s dizzydeac from :slight_smile: Sorry you seem to be suffering from migraines after your VNS. I sometimes have one pupil that gets larger than the other when I am having a particularly bad migraine plus having my mm symptoms at the same time.

A lot of drs start out with Verapamil, depakote or inderal for migraines. There are lots of others. I personally take topamax. I’m glad that you are doing better with your MM. Hopefully,this is just a minor side effect from surgery and will be gone in a few weeks.

Good Luck!