Mav and Menieres

I see a lot of people have similar symptoms with both Menieres and MAV. Does anyone else out there have both or aren’t entirely sure?
My ENT says I have Menieres, but I’m not so sure. I don’t have the hearing loss or tinnitus-thank God. I do ,however, feel dizzy and lightheaded daily. This dizziness is particularly worse when I am in a Dept. store (all the lights). The visual element gets me. I am on a low sodium diet plus watch my caffeine, wheat, gluten etc. What are the treatments for MAV?

That would depend on who you ask. What’s been working for me is Ritalin, sunglasses in fluorescet lighting and soft-plugs for my ears if I’m in very loud places. Then again…total silence is deafening to me.

If your ENT thinks you have Meniere’s despite the fact you have neither tinnitus nor hearing loss, he or she probably shouldn’t be treating you. If you don’t have tinnitus, hearing loss or ear fullness, it isn’t Meniere’s.

This page (from Tim Hain, a migraine and MAV specialist) is all about treatment of migraine:
www.dizziness-and-balance.com/disorders … RAIN6.html

And these are the drugs he typically uses for migraine prevention (particularly MAV):
www.dizziness-and-balance.com/disorders … ntion.html

It was thought by some doctors I saw at first that I might possibly have Menieres but the audiologist entirely ruled it out because I had no hearing loss whatsoever and ticked all the boxes for migraine, including the symptom you list here of feeling dizzy in department stores because of the lighting and visual stimulation. I would think that the visual element in your symptoms, let alone the unrelenting lightheadedness and dizziness, clearly point to a migraine diagnosis more than anything.

Brenda

MAV and Menieres are very closely related.

dizziness-and-balance.com/di … n_eti.html

When I was 20 I was told I had menieres that had burnt itself out! Later, more ENT tests said I had endolyphatic hydrops, then neurology said I had basilar migraine, more ENT tests showed a pattern of menieres, then neurology said vestibular migraine. In the end you can just try and treat both. I take Serc for the ears, dont eat too much salt and try and avoid the migraine triggers.

Christine

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I see alot of people have similar symptoms with both Menieres and MAV. Does anyone else out there have both or aren’t entirely sure?
My ENT says I have Menieres, but I’m not so sure. I don’t have the hearing loss or tinnitus-thank god. I do ,however, feel dizzy and lightheaded daily. This dizziness is particularly worse when I am in a Dept. store.(all the lights). The visual element gets me. I am on a low sodium diet plus watch my caffeine, wheat, gluten etc. What are the treatments for MAV?

— End quote

I would suggest you get and read two books that may help . Heal Your Headache and The Migraine Brain. Several things that you may want to try is the following.

  1. Make sure you are one a regular sleep schedule. Same time to bed, same time up each day.
  2. Eat small meals instead of big ones throughout the day.
  3. Get a copy of the migraine diet and follow it…it makes a big difference for some , for others it does not. It took about two months for me to see a difference. I was VERY strict with following it.
  4. Make sure and drink plenty of water.
  5. Get at least a small amount of exercise daily.
  6. Have them check your Vitamin D levels ( seems that some that suffer from this have low levels plus they need to be addressed if they are low) Also have b12 levels checked.
  7. Keep a journal of what you eat, your symptoms, what makes it worse/beter etc…so that you will have information for the doctor.
  8. Find a doctor that is familiar with this to see.

So far I have been unable to tolerate any medications for this other than Valium at a very low dose. So I cannot speak to the medications that may or may not work. But there are many that have been helped with the proper medication it is just trial and error to find one that may work for you.

But in the meantime making lifestyle changes can (or at least for me) be beneficial to make this at least more managble. But you have to be strict with them …and there are some triggers which you have no control but the books do address some of those issues. Best of luck.

I’m not sure I don’t have both myself. i do have Meniere’s as evidenced by two different doctors and my symptoms. However I DO have horrible migraines and silent migraines both… I have no insurance though so going back to anyone else to also get a diagnoses of MAV is hard.

So many symptoms overlap that sometimes I think it’s hard for people in the medical profession to differentiate because they see so many people all the freaking time.

I have bilateral menieres and silent migranes. I’m still having a hard time figuring out how to treat the migraine part. I got the Heal Your Headache book but it’s hard for me to read and then I don’t retain information very well since my vns surgery. My neuro had me on 1800 mg of Neurontin but it hasn’t helped with the dizziness and confusion. I left my oven on all night earlier this week and now I’ve been told no more cooking that invovles my stove for my own safety. I’m slowly going down on the Neurontin over the next 3 weeks til I get to 900 mg. Then when I get insurance (Medicade) I will be switching to Topamax. I’m trying to learn; I know there so much information on this site, but as I stated, my eyes get tired and I don’t retain information well so it’s gonna take me a while.

I do have a diagnoses of both MAV and bilateral meniere’s. Personally, I am in denial regarding the meniere’s. I have one doctor absolutely refuse to diagnose me with meniere’s because I have never had the classical violent spinning attack. The dizziness and vertigo I experience are better explained by migraines. I do have mild low frequency hearing loss and tinnitus that is associated with meniere’s but that does completely go away from time to time, and I haven’t experienced fullness in a number of years. I also react to food much faster than what can be explained by meniere’s, but is typical of migraines.

So, with my meniere’s symptoms being iffy, I will remain in denial. :lol:

I have classic Menieres with “all four” tinnitus, fullness, hearing loss, vertigo all fluctuating, waning, waxing… I also have Migraines & headache, so does that mean I have MAV? I dont really know.
Besides rotational I have all types of false motions, feels like I’m walking on a boat,
floor suddenly drops, wall moves… at night bed rocks.
Just generally dizzy, General vestibular hell…
In the pitch black when I cant see its reallllly bad.
So who knows…

I was diagnosed with vestibular migraines in 2000 and bilateral MM in 2005. I have no question that I have a correct diagnosis. I have tinnitus,aural fullness,fluctuating low frequency hearing loss, episodic rotational vertigo. I also have endolymphatic hydrops confirmed by EcOG in both ears.

On the other hand, I have extreme motion sensitivity,photophobia,phonophobia, pulsating tinnitus, nausea/vomiting,rocking/swaying,clockwise,counterclockwise,sideways and circular vertigo,tilting and extreme imbalance.I also have blurred vision,wavy lines or ticker tapes in my field of vision,brain fog,headaches that start in the back of my neck then continue into either my ear or side of head that throbs and nothing relieves these symptoms except a pain reliever and sleep. After which, I can have the “hangover” for days to weeks.

I’m sure this sounds very familiar to those of you that have both and I have probably forgotten some of my symptoms. But this is why I am sure this is why I have both and I have all the symptoms you have described too IN8.
Hope this helps. I am seeing some improvement after 5 yrs of both with topamax and klonopin plus some other drugs and supplements.I also watch my triggers as my as I can and eat a very healthy diet plus keep as much of daily routine as possible.

dizzydeac