Meniere's Disease - What Does It Really Feel Like?

Textbook and web descriptions are pretty generic. Meniere's symptoms run the gamut from vague and indescribable to stark and obvious. There are three categories of symptoms: dizziness, tinnitus and hearing disturbance. But each of these is multi-faceted and each changes over time as a result of both treatment and adaptation. Furthermore, each of these symptoms can occur with other illnesses or conditions.

Meneire's Disease is a subtle tormentor. If you've adapted fairly well or if your physician has your symptoms under control through treatment, you are not good as new. But you may appear to be so. Many people around you will quickly forget that you are suffering. They may notice that you don't hear as well as you used to, or that you stumble sometimes. But they do not see or feel what you feel. That's why it is good to think about what the symptoms are really like. It will remind you and any of your loved ones who are reading your words that you are truly dealing with something difficult and real, on a daily basis. But what's more, it may just help to show you that this disease might just be downright tolerable.

Dizziness
I would distinguish between vertigo, dizziness, and instability. Vertigo is a spinning of the perceived world regardless of whether or not your body is moving. It's similar to what you see if you spin in circles many times, or what you feel when you go to bed after having drunk too much alcohol. Things spin and you can't stop it. Standing or walking are out of the question. It's horrible, terrifying, and nauseating. Fortunately, for me anyway, it only occurred with Meniere's Disease a few times. I have a strong stomach and I'm happy to say that I never vomited once from this damned disease. But I'm one of the lucky ones. Many people have been hit so hard that they have been physically ill many, many times. For me, true vertigo only happened at the very beginning of the illness during "attacks", and for a day or so about three months after onset. And again fortunately, I was able to withstand this vertigo by lying down and closing my eyes.

To me, dizziness is when your head feels as though it's spinning for a moment and it causes you to be unstable. We have all experienced this when, for example, we stood up too quickly, or turned our head too abruptly. It may occur as a result of peripheral visual stimuli. This is why some people have trouble reading while riding in the car. Dizziness is common in Meniere's Disease, especially at the beginning. But I still have dizzy moments. Several months after onset my family and I visited Myrtle Beach with some relatives. Mostly I just sat in a folding chair on the beach, but occasionally I attempted to move around a little. I recall standing at water's edge and having a horrible time when a wave would come in and then recede around my feet. If I looked down and saw the water and sand moving back out towards the ocean, I would be very dizzy and would almost fall down. This would disappear when I moved to stable ground. Now (13 months after onset) I do not have much dizziness, but I know what to avoid. I will freely admit that spinning around is completely out of the question for me. Closing my eyes and pointing my face upward will almost certainly make me stumble.

Instability is a mainstay for me. If you weren't clumsy before getting Meniere's Disease, you will be after. This is really rather tolerable, however. If I'm walking down the hall and turn a corner, I may stumble a bit or may have to touch the wall. While riding my bike if I look down to, say, check that my rear tire is fully inflated, I may swerve to the left (towards my bad ear). I feel relatively unstable in most dramatic body movements, such as jumping. But I'm used to it now, so it really is not a big deal. Recently I tried to jump up and grab the end of a helium-filled balloon that a child had accidently release and was stuck on the ceiling. It was about a foot and a half above my outstretched hand. It was not a difficult jump, but I had to keep looking up at the string in order to grab it. That was very difficult and made me feel very clumsy.

But hey, I got the balloon and the kid was happy.

Tinnitus
I really hate tinnitus. It's a ringing, hissing, buzzing, stupid, godforsaken spontaneous sound in the ear that won't go away, can be anywhere from tolerable to insidious, benign to crippling. I've always had it to some degree, and I've heard the same from others. But since Meniere's hit my left ear, it's been far, far worse. Very loud. Almost always noticeable. I don't think much is known about what tinnitus is, what causes it, and what might alleviate it. The only explanation I've received from and ear doctor is that it's the brain's way to compensate for hearing loss. That seems believable except that it doesn't explain why I've always had tinnitus to some extent, even before Meniere's Disease, and even in the ear that has "perfect" hearing. Tinnitus also varies with other factors such as pressure in the ear, time of day, and stress. When I have a cold and am blowing my nose often, or when I fly, it's worse. In the late afternoon through the evening it's worse than it is in the morning. When I'm stressed, it's worse. That suggests that there is a perceptual component to tinnitus. But I can also affect the loudness and "quality" of my tinnitus by clenching my jaw a certain way. That and the pressure issues suggest a physical component.



So we have three possible reasons for tinnitus: the brain trying to compensate for hearing loss, overall stress levels, and mechanical factors. Fortunately, there are ways to address all three. I mentioned a Meniett's Device in a previous post. This is a new treatment designed to teach the brain to cancel out tinnitus. It involves calibrating a listening device to the frequency of your tinnitus, and then embedding specially tuned sounds in music. The patient listens to this music for several hours a day for a few months. Results have been promising. It is not easy to get a Meniett's Device, however. I have been on a waiting list for one through my ENT for four months now. I eagerly await it, and my doctor assures me that I am still on the list and will receive it when they've crossed the necessary hurdles. Apparently it's a training issue or something like that. Come ON, people!



There are many ways to treat the stress component. I will not pretent to have conquered stress, but I have thought about it and worked on it long enough to know that, for me, vigorous daily physical exercise in indespensible. I cannot say enough about this. I believe that it has helped me deal with the challenge of Meniere's Disease, as well as many other challenges in life, better than anything else. Anti-depressants have also been helpful for me, particularly in the first several months of the disease, which are the most frightening. I do not believe that I will need to take anti-depressants indefinitely, but they sure have helped me get through the first stages of this disease.



Some other ideas: therapy, meditation, yoga, boxing, knitting, gardening, para-gliding, hiking, chopping wood, reading, painting, weight-lifting, swimming, bingo, cleaning your basement, writing a letter, playing with your kids....



Hearing Disturbances
There is hearing loss, to be sure, but the remaining hearing is just not right. That's why I say hearing "disturbance" rather than simply "loss". Early in Meniere's I was most frightened by the dizziness. When you cannot stand or walk, subtler sensory concerns take a back seat. But once the dizziness became commonplace and I began to adapt, other symptoms began to disturb me more. It was for some time tinnitus, because now this is the most noticeable symptom on a daily basis. But I have hope that it can be treated. And it's not much more than annoying. It's just not that big a deal in the context of all the other symptoms. Currently, and I suspect for the remainder of this disease, the hearing disturbances are the most upsetting. What's lost is gone and it's not coming back. And it'll probably get worse.

The hearing in my left ear is compromised mostly in the upper ranges. Several hearing tests have shown this, but it's obvious. I cannot hear the "s" sound when spoken. When my good ear is covered, it is very difficutl to discern conversation at a normal level. The distinctions between words seem to be lost. And the hearing seems to drop off rather dramatically by distance. I can carry on the phone conversation with no problem with the receiver against my left ear. And I suspect I could converse in person without a problem provided that the other was not further than two feet from my ear. But move them to twelve feet away and I will have problems.

My ability to detect middle and lower frequencies seems to be intact. However, these sounds are distorted, particularly at high volume. Loud low frequency noises are very uncomfortable; things like large trucks passing me on the street, booming bass-heavy car stereos, etc. They seem to cause actual physical discomfort in the ear, as if the movement of my eardrum in response to these sounds actually hurts my inner ear. Loud middle or higher frequency noises are worse. They cause a kind of distortion in the ear that is very, very uncomfortable. It is much like a cheap radio turned up way to high. I have two toddlers and toddlers are fond of screaming for fun. And they have unearthly high-pitched screams. When they do this, which is often, I have to cover my ear as soon as possible.

I think what bothers me most is the obvious fact that these hearing disturbances have worsened over the last year, and will likely continue to worsen. I have a strong feeling that my left ear will eventually be no more than a prop, or a decoration. This is very frightening to ponder, particularly considering that Meniere's Disease is 15 - 30% likely to occur in the other ear. I'm not sure what else to say about this. Most challenges are tolerable to me when I can identify some kind of strategy to improve them. This I cannot. I'm open to suggestions.