Living with Meniere's Disease

I'm not grumpy. I'm not irritated.

Well, okay, clearly I am, but it's NOT because of you.

Well, okay, it is because of you, but I know you're not trying to irritate me.

I've got a little sumpin-sumpin called Ménière's Disease.

Ménière's Disease is a problem of the middle ear. In short, the fluid sacks that "catch" sound stay filled with excess fluid. The primary consequences of the disease is life sounds weird. Much of the time, life sounds painful. My Ménière's has brought on, or is accompanied by, hyperacusis (appropriately described at this helpful site as "a life altering condition). Let me quote you the important part:

Imagine being at a movie where the sound track is turned to the highest volume. Actors' voices are screaming at you. After five minutes, you leave holding your ears and cursing the theater for its poor judgment. Turning newspaper pages, running water in the kitchen sink, your child placing dishes and silverware on the table - all are intolerable to your ears. A baby cries or a truck screeches its brakes to a halt and the sound is excruciating. What has happened to my ears? 

The person who has hyperacusis can't simply get up and walk away from noise. Instead, the volume on the whole world seems stuck on high. Hyperacusis is defined as a collapsed tolerance to normal environmental sounds. Ears also lose most of their dynamic range.

Perhaps the worst part of Ménière's is trying to explain to people how the things they do cause you pain or gross discomfort. My complaints always sounds so self-centered. I really am sorry about that, but I don't know what else to do.

For me, loud and or sharp noises are painful (see examples below). I also suffer from nasty bouts of vertigo as well as constant ringing / buzzing in my ear (tinnitus). I also have hearing loss, especially in conditions with low, masking noise. For example, I love watching football on television. If the producers turn the crowd noise up too high, I can't hear much of what the announcers are saying. I can still see the cheerleaders so the game is not a total loss.

By contrast, I've got two bum knees. The right one was replaced when I was 49. At least with knee pain, I could do things to relieve it or get away from it. Ménière's stays with me constantly. If I can manage symptoms and get away from the pain of percussive sounds, I still have the shrill screaming in my head and it'snot my wife.

Percussive sounds are the worst. If you look at these images, you can membranous labyrinth which (for Ménière's suffers) is engorged with fluid. Imagine being underwater. Sounds rumble and persist. That's what Ménière's is like. Percussive sounds are the worst. They are painful and disorienting. They don't always have to be loud sounds. When my son taps the select button on his lap top it feels like someone is thumping directly on my ear. The sound of people walking on hardwood or tile floors is like getting slapped in the head with a pool noodle.

begin to understand why. The stirrup is transmitting sounds from the ear drum to the 

My doctor is generally very reluctant to diagnose Ménière's, but he made an exception in my case. When I described my symptoms and mentioned that my dad also had it (we think), he diagnosed it on my first visit - something he said he never does. I have the full gamut of symptoms.

Treatment

So far, the goal is to attack the fluid retention in the membranous labyrinth. The approach is two-fold: limit salt intake and enjoy a daily diuretic pill. The pill is easy. Take it. Limiting salt intake is more difficult. Doc suggests I eat less than 1500mg of salt daily. Check your Morton salt canister. Just one quarter teaspoon equals 590mg of salt! My entire daily intake of salt should be held to slightly more than a half teaspoon of salt. Think about that. One particular brand of flour tortilla has 900mg in one tortilla! Almost all soups are in the 1000mg range. Any time I eat out I am playing with dynamite. I enjoy cooking at home, but even that has been an adventure. Like Lemon Pepper spice on your grilled chicken? Careful, check your shaker. Most "lemon pepper" concoctions are mostly salt. And so it goes. Staying away from salt is a very challenging objective.

There are more aggressive treatments, but results are mixed and most of them result in some significant degree of hearing loss - like when they remove the inner ear. Yeah, that's aggressive.

Examples

Popping plastic water bottles. Someday you may hear that I have committed murder. Chances are the victim was popping a plastic water bottle. Sorry about that. I believe this constitutes fair warning.

Popping, smacking gum. I'm not sure why people do that in the first place, but it is exactly like firing a gun beside my head. Please don't EVER chew gum with your mouth open. Same for smacking food. Why do it in the first place?

Doing the dishes. The clanging and crashing [you call it bumping and touching] of glass and ceramic dishware is excruciating.

Tapping, drumming, any repetitive thumping sound. You nervous Nellies who can't hold your hands still are the problem. Consider pinching cotton balls instead. Please.

Noisy restaurants where dishes and flatware are stacked and sorted in the dining area. Why do it in the first place?

Tissue paper. OMG! I recently gave my wife a sweater, presented in a box lined with tissue paper. When she opened it, the sound was exactly like machine guns firing all around me. It was a bad scene.

**Picket Fencing** You're not going to believe this one... Since my vestibular (balance) system is thrown off by the middle-ear problem, my eyes sign up to help out. (Think of an ice skater "spotting a mark" so as to not get dizzy when spinning.) If there is any flickering (think of a light behind a picket fence as you drive by it at night) object in my line of sight, it aggravates what my eyes are trying to do to help me balance. Strobing, flashing lights are obvious sources of irritation. My wife has a nervous habit of tapping one hand with the fingers of her other hand while we drive. It's a problem. Fortunately, I don't have it as bad as the brother of a friend of mine. He can't go into Home Depot. ... think about all those rows and rows and shelves and shelves of product. They group one product together and then stack another group. As you walk past these groups of product, it literally strobes the eye. You'd never notice it... unless you have Ménière's.

Stuff like that.

I realize that this is a noisy world. I know that people don't consider that the sounds they make cause pain to others. I know that I can't change that.

I carry ear plugs with me everywhere I go and often use them. I am beginning to wear ear plugs in my own house more often. I realize that this is my problem to deal with. I've tried to explain to my family what it is like, but Ménière's is so bizarre, it is almost impossible for them to understand. Out come the ear plugs.

The other day a lady, no, a woman walked into WalMart.  I was about 25 feet from her and on the opposite side of a four foot row of merchandise.  She gave her gum a good POP - I guess so everyone in WalMart would know she was there. I actually ducked my head and winced in pain.  It felt like a firecracker going off five feet from my ear – something I have a little experience with.  I wanted to slap her but I was feeling kind of pressed for time and I didn’t want to take the time to explain why after I assaulted.  Still, it was a painful experience.

One in two thousand people suffer with Ménière's. I hope by sharing this you'll take a quick inventory of your own behaviors and try to limit the things that might be a problem for the Ménière's sufferers in your world.

I hope you understand.

____

I'm not making this stuff up...

Hyperacusis Network

Wiki Article

Mayo Clinic says so

Washington University
(read the case stories at the bottom of page)