Anyone else have Meniere's disease?

A couple times this year I had a stuffy feeling in my ear which I just figured was a head cold. I had a few short dizzy spells and just figured it was related to my stuffy ear, but I assumed it would go away by itself.

Last Friday I got a really nasty dizzy spell, the room was spinning like I was drunk, and my eyeballs kept darting around. I sat down for a while but that didn't help. I ended up violently throwing up in a parking lot and couldn't stop retching. My wife drove me to the hospital where they said I had vertigo, they gave me motion sickness pills and referred me to an ear nose throat specialist.

They said I have Meniere's disease, an inner ear condition that has no known cause or cure. I have some hearing loss in my left ear which may or may not be temporary. This can go away at any time, within weeks or last for years. They gave me some eye/head/neck exercises to get me used to dealing with dizziness so I do not become incapacitated by it.

Does anyone else have Meniere's disease? Has anyone had it before and it went away? I want to know how bad this is going to be. Certainly last Friday was awful and I hope a major episode like that doesn't reoccur. I have had slight dizzy spells every day since then but nothing too bad.

Re: Anyone else have Meniere's disease?

Thanks. To clarify, the doctor said "All signs seem to be pointing at Meniere's", so it's not 100% certain at this point, but highly likely. I'm going back in three weeks for a follow-up.

I am 39 years old. With the benefit of hindsight, I have noticed that over the past 5 years or so I have gotten much less tolerant of many of the spinning amusement park rides that I used to be able to ride without having any problems. In particular, I recall a simulator ride at Busch Gardens that made me so dizzy I had to close my eyes during the second half of it. Less than an hour later I felt like I was going to faint and had to sit down for 20 minutes or so. At the time I thought it was due to the extremely hot weather and the fact that I had drank 2 coffees and a Mountain Dew that morning, but no water! Looking back, that could have been an early manifestation of Meniere's, it fits everything (including the caffeine trigger).

Re: Anyone else have Meniere's disease?

Thanks for all the responses. There may be truth to the stress theory, I have been under a lot of stress lately at work. Over the weekend I stopped all caffeine and aspartame, and I have reduced my sodium intake as well. I almost felt back to normal over the weekend with no dizzy spells, not even when doing the balance exercises they recommended. But on Monday when I went back to work I started feeling slightly dizzy again. I wonder if it's the lighting or my computer screen.

Re: Anyone else have Meniere's disease?

That's quite a story, Randy. It's easy in hindsight to say you shouldn't have driven, but at the time of the attack all you really wanted was help, so I can see why you did it.

My ear is only slightly full feeling now, and sometimes not at all. I've still not had any caffeine or aspartame in 2 weeks. Reducing sodium is tough but I think I at least have reduced it from my snacks. I made the mistake of thinking a chicken salad would have less sodium than a hamburger, later I found the nutritional information online and it was actually higher (dressing/cheese/chicken). At any rate I'm trying to eat more fruits, which is good for me any way.

Interestingly, I had a nasty stomach flu on Monday and Tuesday, and my ear felt fine on those days...must have something to do with being dehydrated or not eating!

Meniere's rears its ugly head, 2 years later!

Wednesday I got to work, had a quick meeting, started feeling dizzy when I got back to my desk.  Next thing I know I'm throwing up in the men's room, unable to stand up, whole room spinning, etc.  I can't open my eyes because the tile patterns on the walls and floor are driving me crazy, but I can't stand to close my eyes either.  Finally someone else comes into the men's room, I tell him to call security.  This was a pretty major Meniere's attack, a bit worse than the one I originally posted two years ago (almost to the day!)   Man, that ambulance ride was a killer!  I got taken to a hospital, pumped full of anti-nausea meds and then Valium, slept a couple hours, wife took me home.  Today I'm back at work.  I have another appointment with my ENT doctor set up. 

In the meantime you know the drill: no caffeine, no alcohol, no chocolate, no MSG, no aspartame, and cut my sodium by 50% or more.  That last one is a killer.  I've been eating steamed vegetables and rice and fruit for 3 days now.  Fruit's not bad but man I would like some ham and bacon, guess that's not gonna happen.  I'm tired because I am used to one serving of caffeine in the morning (it worked for the last 2 years but now I just don't want it). 

 

I think last time I started thinking it was a one-time fluke, this time I've learned my lesson. 

I'm going to really try to jump into the low-sodium lifestyle this time around.  I think I let bad habits creep back into my life because I wasn't having attacks.  Also I have to get some of my prescriptions updated, I had 2-year old Meclizine and Promethazine pills that probably aren't any good any more.  I want to keep the Valium handy too, it seemed to help me more than anything else at the hospital. 

 

 

I may have gone too far in cutting back my sodium, yesterday and today all my muscles were sore!  I read somewhere you need to have at least 500mg of sodium per day, and I think I may have not been getting enough salt!  I really was trying hard to avoid any salt because I didn't want the dizzy spells to come back.  It is weird how fast I got used to the taste of low-sodium foods, I tried a regular cheese curl yesterday and the salt practically burned my tongue!  Well, I guess now I have to make sure I at least get 500mg.

Thanks Randy, I appreciate it.

My ENT doctor said to keep doing what I'm doing, although he said I could become progressively less strict with sodium too see what my tolerance levels were.  He also gave me some exercises to do that might help with balance and circulation.

Hi Jen, and welcome to the Home Theater Forum.  This After Hours Lounge has helped countless people over the years on a variety of topics so large I can't even begin to list it here.  Anyway, on to the Meniere's discussion!

Here are the exercises.  You should not do these if you already feel dizzy.  Also, if any of these makes you start to feel dizzy, stop immediately.  I do them when I've spent a lot of time not moving--such as days where I spend too much time in front of the computer, and also days where I do a lot of driving.  The idea is that it gets your inner balance systems used to movement and you will be better able to deal with feelings of being off balance.  You can do these in the comfort of your home.

1. While sitting in a chair, bend forward and touch your toes 10 times, each time returning to a position of sitting up straight.
2. Now go from a sitting to a standing position 10 times.
3. Sit comfortably.  Turn your head from left to right 10 times.  Start out slowly but try to increase your speed over time.
4. Sit comfortably.  Move your eyes from left to right 10 times.  Start out slowly but try to increase your speed over time. 
5. Get a ball the size of a tennis ball.  Sit and stare up at the ceiling.  Move the ball back and forth between your hands 10 times, holding your hands up towards the ceiling.  Eventually, try tossing the ball instead of just handing it off to the other hand.  You can also bounce the ball off a wall, above your head, from one hand to the other. 
6. Walk up and down a small set of stairs several times.  Stairs can often trigger vertigo so it is important to be careful doing this! 

That's about it.  You can add your own variations.  The idea is to gradually be able to push yourself into more situations that might put you off balance, and your brain will re-wire itself with your balance system and you will be able to overcome these situations.

I also have some great news that I hope is encouraging to you--I have been Meniere's attack-free since July 2009!  Also I have greatly reduced the feeling of fullness in my ear--almost completely eliminated it.  I attribute this mostly to my change in diet.  It wasn't easy but boy, has it been worth it!

Here is what I cut out entirely, in order of what I feel is most important:
Aspartame and any other artificial sweeteners
MSG (a preservative)
TBHQ (a preservative)
Caffeine (this was tough, but it can be done)

Here is what I reduced my consumption of:
Sodium - cut by 50%
Alcohol - no more than 2 drinks at a sitting
Dark Chocolate - contains caffeine

It helps to start thinking of aspartame, MSG, and TBHQ as poisons, (even though they really aren't), if you have Meniere's, these are not things you want in your body.  Caffeine is a stimulant that can trigger or worsen episodes.  Excess alcohol can make you dizzy.

Reducing sodium is the toughest thing (it seems like everything has it!) but since sodium makes your body retain water, it increases the pressure in your inner ear.  The easiest way to reduce sodium is to make more foods from scratch, stop eating frozen microwave meals, and reduce the amount of dining out in restaurants.  More and more restaurants are offering nutritional information on their websites, so if you like going out to eat, it helps to find which items are the safest for you to eat. 

For example, I love McDonald's fries, but I found out that I can reduce most of the sodium by simply not having them salted (they will do this for you) and don't dip them in ketchup (or not quite as much!).  Heinz does sell a sodium-free ketchup, by the way.  As for the burgers themselves, don't get ones with cheese and bacon and sauces on them. 

In grocery stores I have even found reduced sodium bacon, chicken broth, etc.  Find substitutes for the things you like, rather than just trying to go without.  I eat unsalted potato chips, nacho chips, low-sodium salsa, etc.  When in doubt, eat fruit!  It really helps if you know how to cook your own meals!  Your taste buds change very quickly and soon you will not miss the salt.