Does anyone here have similar symptoms to me?

I’ve been through the ringer here with dr visits :shock: , and have been diagnosed by one ENT with Meniere’s disease, and another ENT tells me it looks like it isnt Ear caused anymore, and that I should see a Neurologist. I had an MRI to rule out more serious causes, and the Neuros who saw that originally said Meniere’s and sent me back to the ENT. Back and forth I go…can people tell me if I the way I feel sounds like you?

I wonder if I might have MAV (this is something no dr has agreed as a possibility yet, it just seems more like;y to me that Menieres i guess), and I will describe my symptoms for u to see if anyone might have similar ones:

I feel like I am rocking on a boat, pretty much 24/7, and I have had this constantly since May 2005. I also often get a feeling of waves rolling beneath my feet.

On top of that, I also feel like there is this ‘pounding in my head’ kind of toward the top back. It’s like a painless pounding, or throbbing - hard to describe cuz it’s just so weird! This is not constant, but I have it off and on…it is very distracting when i am trying to concentrate on something, but it does not hurt.

When this long period of floating vertigo started, I also had a week and a half of off and on horrible, loud low pitched tinnitus.

I also have some very very mild low tonal hearing loss, which appears to have fluctuated partially back to normal according to Audio test.

I’ve got some visual symptoms, but docs tell me it is an unrelated eye problem. I see light spots in the corners of my eyes off and on, they move slowly from top to bottom of the visual fiels, always staying on the sides tho…

I can’t for the life of me figure out what is going on!!! (and apparently neither can any dr. ive seen out of the many of them)

I have been trying 200 mg a day of additional magnesium, on a clinical nutritionists suggestion. Still, no major changes after about a month.

Cuz my dizziness is constant im not sure if it could be MAV - I got the impression from reading the internet that most people with MAv do npt have constant dizziness like me, or is that incorrect?

I have all the same symptoms, except I only have hissing in my ears. I read Dr Hains site on mav and he notes that rocking sensation you discribe. Your visual symptoms are to me a positive for mav. I went to the Diamond Headache Clinic in Chicago and even they were not up on mav. Dr Battisita is the one who gave me this dx. He is in Chicago. I wouldn’t get discouraged if the Dr you see don’t know much about it. I tried mag and had to stop because of the stomach problems.

Perhaps you could convince a Dr to work with you on migraine preventive meds to see if this helps. Its the best way to dx mav as far as I can see.

charisse - did the mag help u at all? if so, what kind did u take and at what dosage?

Kermit,

My neuro told me about a product called migralef, you get it in a healthfood store. She said it was studied my the neuro assc. and showed great promise. I couldn’t tolerate the mag tho. My stomach went nuts, I got baaaad heartburn that nothing would get rid of. I only took one dose so I don’t know if it could of helped. I’m not sure how many mg. of mag are in it, but maybe check it out online and see. She said it has worked for many of her patients.

Got the spelling wrong it migraleve.

Kermit,

The hearing loss you describe is almost identical to what I originally experienced. I was almost deaf in my bad ear for about two months. My hearing now is within normal ranges, and still exceptionally good in the high frequencies. The visual thing with the lights you describe sounds like a form of an migraine aura. (sp?) The vertigo you describe is also almost identical to what I experience.