MD and feedback/ help

Ears, nose and throat
1

I have not been diognosed with MD because I have no hearing loss. I started eating a low salt diet. Last night I fell off the wagon and had some greek food. I had an attack but the attacks that I have are so odd... When I have an attack I have extreme anxiety. I dont really feel off balance but i do notice my ear feels full. What do people with MD experience when they have attacks?

I started doing vestibular thearpy on my own and noticed a huge difference. Throughout the last 3 months i noticed when I would turn corners at work or bend over it fealt like my body was still shifting. If i turned to quickly i would feel extreme dizzy and off balance... Trying the thearpy on my own has helped. I want to get a perspective on what a day to day life with a person who has been diognosed with MD.. What is the difference between vestibular nueortitis and MD?

My ear does feel somewhat full but i can hear just fine. Its like the inner ear feels swollen when an attack occurs. How do you people eat when they go out to dinner? Its awful being so young and social and you have to watch very closely what you eat. Its hard and im trying to take it all in with a positive attitude.

2

Mine started with ringing and fullness in my ear and then I had a few dizzy moments, then a full blown vertigo attack. Those were non stop spinning with vomiting. But at first it was one every year to 6 months. Then the frequency of dizziness and not having range of motion with my head without getting dizzy increased to daily. My hearing started to decrease with the symptoms. My hearing in that ear comes and goes. The thing that has helped me the most is low salt, low caffine, a diuretic, and pine bark. ( you can by at a vitamin store.) It helps with the circulation in the inner ear. Google and read about it. It has given me full range of motion with my head again. Good luck. I hope you feel better soon.

3

About 4 months ago I stopped eating lunchmeat.  Yogurt and fruit for lunch, no sandwiches.  That alone has reduced my sodium intake by about 800 mg a day.  I love pickles, peppers, olives and anything else pickled.  I've given all those up.  No processed foods.  I have my sodium intake to about 1000mg per day.  I've had no episodes in the last 4 months.  I've lost over the past 3 years about 70% of my hearing in my left ear.  I used to have severe episodes about every 3 months.  When I'm out for dinner I have a good idea what has too much salt.  I've been eating lots of salads with EVOO and red wine vinegar, not the pre made dressings.  There's no salt in vinegar.  This is what's helped me.  Best of luck to you.

4

David,

Did you start to loose your hearing every time you had an attack? My diet is low sodium. On a day 2 day basis do you feel like a normal person? I have had about 10 attacks and i would visist the ent the next day for a hearing test and have no result of hearing loss.

Do you take any natural supplments?

5

Hi z,

Your note made me wonder once again, if MD doesn't show itself more subtlety for a while, before it finally "blossoms" into the full Monty. When I think back over the several years before I was diagnosed with MD, I wonder if it was "brewing.   I can remember a few falls where I just thought I lost my balance, although it made no sense at the time.  Once, I woke up during the night and on my way to the bathroom, the room began to spin, and I fell and got a concussion.  I also had high pitched tinnitus that would just come and go.  But, all those years, I never had a hearing problem, never felt fullness, and never suspected MD because I'd never even heard of it.  However, it's a progressive disease, and I suppose it has to start somewhere.  

I wish I'd known enough then to decrease my sodium intake...I wonder if I could have prevented the nightmare that eventually followed.  Who knows.  But you're right that it's a challenge, if you eat out.  I've become an eat-at-home person, where I can control the sodium.  I find that if I eat essentially unprocessed foods and don't add salt, I can come in well below the 1500mg of sodium that's typically recommended.  If I eat out at a restaurant for just one meal, I can feel the difference.  I take a diuretic each day, but I stil need to keep the salt down.

I used to always have the sensations you described: Becoming dizzy and off balance when I turned my head too quickly, or when I bent over.  Just the movement of pushing a vacuum cleaner would send me reeling.  And yes, anxiety definitely goes hand in hand with MD.  It's natural for your nervous system to go into high anxiety when you don't know where your next movement will land you!  For me, the unpredictability of it all, made me extremely anxious. 

I think the day to day life experience of a person with MD varies widely...There are so many variables, from how severe a case they have, their diet and the meds they're on, etc...  One thing you'll see here on the forum is that everyone's case is a bit different, and everyone responds differently to the various treatment regimens.  

There are so many vestibular disorders that have similar symptoms...but I know that low register hearing loss is one of the defining factors in full blown MD.  I hope you'll be able to find a treatment that will help you now, with the symptoms you're experiencing.  I'm happy that you'be seen improvement with a low sodium diet and vestibular therapy.  Good for you, for doing it on your own!!

I wish you all the best in managing your symptoms and getting to the root of the problem.

Sincerely,

J-

6

My ENT says my hearing loss is permanent.  I actually have an appooint with him this Wednesday.  My wife and I argue les because I can't hear her as well as I used to.  When one door closes another opens.  At least I haven't lost my sesne of humor.

7

Hearing fluctuations are really common. When I went in on a bad day I couldn't hear at all. Ear was full and I was so dizzy. About had an anxiety attack during the test. There are times when I can hear out of that ear but doesn't last long. I sure wish they could find a cure. Or be more prevenative. If it's not black and white they don't give preventative instructions. I think if I had caught it early on and took the right health measures I could have kept my inner ear from getting so enlarged.