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anyone out there understand menieres disease? vestibular disorder

Posted by @firewhirlgirl in Brain & Nervous System, Jan 12, 2012

Just wanting some support I guess. Lost a lot...quite a life changing event. symptoms actually suck rather ridiculously.

Tags: mental health, sleep problems


Posted by @lminogue, Jan 16, 2012

Hi - Check out some of the other posts - there are a few on menieres.
My dizzy spells started three years ago after I passed out and hit my right side of head (had stitches) on a door. Had tinnitus for many years before the fall. Then I started have the feeling of vibrations in my feet and legs below my knees. I also had the sensation of when I was walking, my body wanted to go one way and my feet the other way. Very off balance, dizzy, nausea, foggy brain and feel like I am going to pass out. My ENT finally diagnosed me with Meniere's Disease. I cannot go on the diuretics due to my ease of fainting. First I had a tube ring put in my right ear - didn't help and made the tinnitus worse. Then, I was put on Prednisone for 10 days - horrible stuff and didn't help. I tried the Meniette device - didn't work. So my ENT told me to try Acupuncture. I found one who is also a Doctor of Oriental Medicine. He used Acupunture to stop the Tinnitus - IT WORKED - noise is 98% gone - When I lie down at night it is gone completely until I stand up again. He also used Bio-Cranial Treatment on me which helped for balance. I am still not feeling well and hoping to get a second opinion. It is wonderful to not have the Tinnitus but I still have issues. Does anyone feel sick when the hear a vibrating noise - such as a car, truck, motorcycle? This sets off the vibrating in my feet and legs and makes me dizzy. I also have fibromyalgia, Irritable bowel syndrome and going through perimenopause - which my ENT said hormones play a huge role in the dizziness. This is a horrible way to "live" (don't feel like I am really living) and hopefully there will be some help out there. Best wishes.


Posted by @mbengst, Jan 16, 2012

FireWhirlGirl, I began experiencing vertigo when I was 6 years old, which means I had juvenile onset Meniere ’s syndrome. This got progressively worse and peaked at age 22. Now I rarely have an episode. My symptoms were (in order) 1) sharp pain and fullness in inner-ear, 2) nausea, 3) vertigo and more nausea. Frequently I would have speech impairment, and only once did I vomit. I have always taken Dramamine, which usually made me more tired than anything, so I would sleep off the episode. For the following three days following an episode, things just wouldn’t seem right, i.e., sensory perception, kind of surreal.

As a young adult I went to an ENT who performed various tests. I also had a CT with contrast and discovered that I have an anatomic abnormality in that part of my inner ear (if I recall correctly it is the vestibule) never developed fully. I later found out that a great uncle had Meniere’s (genetic?).

With recommendations from my ENT, I learned to manage the frequency of the episodes by avoiding the following refined salt and caffeine (coffee, chocolate, tea). A little salt and caffeine was OK, but large amounts seemed to trigger an episode.

There are many treatment options depending on the root cause of Meniere’s. Don’t stop searching for a treatment that will work for you. I hope you are able to get some relief soon.


Posted by @helpmeunderstand, May 25, 2012

I do not have meniere's , but my older sister does. And forgive for thinking this but I believe she uses the meniere's as an excuse not to do anything. She has a history of exaggerating and going to the doctor excessively, even before the diagnosis of menieres diagnosis. Believe me when I tell you I have talked to several health care professionals, specialist, as well as researched this disease to better understand and no where can I find where it is completely debilitating. She watches television or reads or plays games on the computer every day, but she isn't able to wash dishes or sweep the floor. She will get up and say the it must be going to storm, my head feels full and I'm nauseous. Then someone will see her at a restaurant or Walmart a few hours later while I'm at work. Or she will say I can't come in the living room because the ceiling fan is on, or I can't go outside because there is a breeze, and it's an every day thing. It's driving me crazy to work every day, go home wash dishes, sweep the floor, etc etc because her ears feel full or she thinks it's going to storm so she can't do anything. Everything I have read or inquired about, the symptoms usually come in "waves" and is not every day. And she also drinks lots of caffeine, eats alot of salt and refuses to cut down. I'm at my wits end!!!!! Oh and if someone comes over, she has to tell them and everyone she comes in contact with about her illness. How do I handle this? I do not want to sound cold, but I don't want to be taken advantage of either. Can you give me some advise? Oh and I won't even mention the earmuffs and walker and other walker, etc she said she needed but sold in a yard sale. Thanks for helping me to understand.

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