Human Kaleidoscope

Meniere’s disease is an inner ear disorder that can cause a colorful, smorgasbord of events: episodes of vertigo (which are usually severe, by the way), ringing or humming in the ears (also known as tinnitus), feelings of pressure or fullness in one ear, and fluctuating hearing loss. Unfortunately, you aren’t given a choice; you either experience one, two, or all three of these events simultaneously.

A Day in the life of Meniere’s Disease

Meniere's disease normally begins like this: You could be sitting at your desk working and suddenly it feels like a small, Teflon balloon has inflated in your left ear. But that’s not all; it also feels like there is a little bit of water moving around inside it. With a slight tilt in your head, you feel the water shift from its location, changing the pressure in the ear. It becomes a nuisance, but it also becomes a game. You try and poke at it hoping that the balloon will pop, but it seems unbreakable. Then, it deflates. The feeling doesn’t disappear but intensifies.

First Impressions Leave Lasting Ones

During the summer of 1997, I had my first bout of Meniere’s disease. It was a year in which my friends dragged me to the movie theater to watch blockbuster hits like “Face-Off” with Nicolas Cage, and “She’s The One”, in which one of my friends went through great trouble to convince the front office that we were old enough to see it (we were only 16 and it was rated R.) To his dismay and defeat, Jennifer Aniston was not naked in the film and I had just wasted $7.50.

Then it happened. We were in the middle of watching “Con-Air” at the Lincoln Village Theater in Lincolnwood, Illinois, when something didn’t feel right. I felt my pupils dilating, which made it feel like my eyeballs were shrinking and expanding, and they seemed to have trouble focusing. My vision kept zoning out from being clear to blurry, the screen switched from being what is was to a pixilated, abstract smudge to my eyes. I tried looking around the room, and there was a delayed reaction. By the time my head had fully turned to the right, it took a few seconds for my vision to catch up. I decided to close my eyes for a while and just listen to the film. I thought that maybe if I rested my eyes, it would eventually go away and I would be fine. I knew what a migraine headache was, and although I never experienced one, I assumed this was what was occurring.

I was wrong and experiencing this while sitting down was only the start of my troubles. The real fun started as I stood up from my seat. My legs felt like mere toothpicks trying to hold up an apple. It was as though all the weight shifted from all parts of my body to my head and gravity was jerking it down as I uncontrollably tripped over the back of a seat and somersaulted to the next row. My friends carried me on their shoulders to the lobby and left me in a corner by the exit so that one of them could get the car.

It is not a Migraine!

Two glaring similarities between a Migraine headache and Meniere’s disease are that both can make a person feel nauseous and increases a person’s sensitivity to light. Sufferers, in turn, become darkness-craving Vampires that seek a nice quiet, dark room with a bed to rest in.

When my friends carried me from the dark theater room to the bright lobby, my head started to spin violently and both of my eyes became kaleidoscopes. I felt like vomiting and it only slowed down when my eyes were shut. Not only this, but my legs were flimsy and I couldn’t even stand without using a friend as a crutch.

A migraine headache does not cause an episode of vertigo, but a throbbing headache and sometimes blurred vision depending on the strength of the headache. Also, tinnitus does not precede or accompany a migraine. These can last anywhere from 4 to 72 hours. A Meniere’s attack has a similar duration, but can sometimes last longer.

Just When You Thought it was Safe…

Meniere’s disease is like having a revolving door of annoying neighbors in your life. They come and they go; and while they are present, can make your life a living hell. And just when you think they’re gone for good, it turns out that they were just on vacation.

The episodes can arrive in clusters: which are that several attacks might occur within a short period of time. However, years may pass before another episode begins. Between the acute attacks, most people are free of symptoms or mild imbalance and tinnitus.

My first attack lasted for a week, but did not completely go away until a month after. It was not until the fourth day after the incident where the spinning motions ended. However, for the next several days, there was still a delayed reaction in sight when I turned my head. The symptoms decreased day by day.

My second bout did not occur until June 2003, a whopping 6 years later. It came back with a vengeance and was much severe; I had to take a week off of work because I could not see straight and driving off the side of a bridge was not worth my life and $8.75 an hour. Halfway through the week, I was able to pinball myself through the walls of my parent’s house onto the couch where I was able to enjoy semi-spinning episodes of Sesame Street and Mister Rogers’ Neighborhood. I wasn’t able to do anything physically engaging, and there was usually nothing to do around 11am.

Since then, I have lost count of the number of attacks I’ve had. Some have been severe, and some have been mild. The mild ones only last a few hours and usually after a nap, the strength of the attack decreases. With focus and concentration, one can walk in baby steps towards their destinations. However, driving is still out of the question.

There Are No Answers (Yet.)

I didn’t approach my doctor until 2005. Despite the vicious attacks I encountered, my parents and I shrugged it off and thought it was just a mild case of Migraine headaches. My father had a history with migraines, and our symptoms were similar. However, he didn’t experience the vertigo episodes that I had.

When I visited my doctor, he saw no signs of health problems. He checked my inner ear canals and saw no signs of wear and tear. No inflammations, whatsoever. I did not smoke, I’ve never done any drugs, and I hadn’t had any alcohol for two years. I was at a very healthy weight of 150 lbs, which was what I should have been for my age and height. I ate a healthy balance of meat, fruit and vegetables. So how could somebody as health as me be a target for such a disease?

Science (or God), maybe for the reasons of keeping life fun and interesting, have kept medical experts scratching their heads as to what the underlying cause of this mysterious disease is. Through the years, more hypotheses have developed; however, none of them have been conclusive enough.

You are a Victim

Think of it this way: You are at the school playground hiding behind a tree. You hear the voice of the class bully call out your as you look for a better place to escape to. In the end, it’s useless to run but you hold on to every thought and possibly that somehow you’ll find a way to break free. After scanning the playground, you find a large pipe that you can crawl into in hopes of being safe.

Then it happens: The pipe starts to move, steadily picking up speed. You want to crawl out, but you can’t. The force of gravity wraps you up like a cocoon and has you at its mercy.

It’s not only the physical trauma that Meniere’s disease inflicts that makes it dangerous, but the psychological effects it can have on a person. Many studies have documented that patients with Meniere's disease tend to have more psychological disability than the normal population, possibly including depression and/or anxiety, in reaction to their disease. It may be necessary to take antidepressants or anti-anxiety drugs, under the supervision of an appropriate health care professional.

In 2006, I had frequent and severe bouts of Meniere’s disease. Within a two month span, I remember having at least four attacks. After one complete episode, there were times that a second one would strike within a few hours. I felt powerless and at the same time, I felt like I lost control of my life and future.

As an active musician, one of my biggest concerns having an episode during a gig, especially with the frequency rate it attacked around this time period. Would this be something I could get used to and fight off while I’m moving around onstage? Would I even be able to perform sitting down and face away from the crowd? I tested these questions out at home during an attack and failed. My arms were too weak to strum, and even in a seated position, my mind was so disoriented that I couldn’t compute what chords to play or what was next in the sequence. I thought about quitting my band, and I felt my dreams slipping away. My parents had suggested become a songwriter for other artists, but the thought of having Hannah Montana singing and performing my songs put me into a larger tailspin.

I also thought about how this would affect my career after I graduate. How long would it take for me to get fired from a job because I couldn’t come in? It would definitely put me in every company’s Black List. I already had attendance problems in class, and I had to explain to my teachers what was going on.

Luckily, I have been fortunate enough to have a good support group consisting of family, friends and co-workers who understood. Believe it or not, this is the most important thing that a sufferer of Meniere’s disease can have.

Support Groups

Ask anyone these days, whether it is your best friend or a completely random stranger, and they will tell you “You can find everything on the Internet.” This is absolutely true. If you type in “Meniere’s Disease support groups” in the Google search bar, you will find numerous chat boards and websites dedicated to supporting people who deal with this disease.

One of these support groups can be found at MDJuction.com. There are 30 members (as it stands), and its occupants range from people who deal with Meniere’s disease to people who have family that deal with it and share their stories. A very popular topic of discussion is that “Meclizine is Bonine.” This is very important to a person dealing with Meniere’s because Meclizine is a drug that a doctor could only prescribe. Now, it is easily accessible and can be found in an aisle at your local pharmacy.

Unfortunately, even these websites are not immune to soliciting messages and immature posts from unruly visitors. Sticking out like sore thumbs are headlines that read “Watch my booty shake” and “Mature Lady looking for Older Gentleman”, posts that belong in a Craigslist personal ads section.

Keeping the Situation Under Control

In this present day and age, Meniere’s disease still has no cure. As I had already explained, treatment that was once deemed as “prescription only” is now sold over-the-counter. Meclizine, an antihistamine used in treating the disease, has been recently added to Benadryl motion-sickness products. It is also sold in a deliciously fruity-flavored, chewable form called Bonine, which is my current weapon of choice. It can be taken before an episode to prevent one from coming, or it can be taken during or after. Doing this would either limit the duration and strength of the attack, or by taking it after, would quicken the recovery time. Another drug called Calan, which is a calcium blocker, can also be used in between episodes of vertigo.

Another alternative is ear surgery, but this is not a procedure done frequently, especially in young people. Meniere’s Disease is much more traumatic around the 50-70 age group, and surgery might be necessary to relieve this.

Eat Smart and lay off the Pretzels and Coffee

What a person eats largely affects the frequency and symptoms of Meniere’s Disease. Having a consistent diet (and not skipping) meals is a good place to start. Any drastic change in the body’s metabolism can trigger the disease.

Avoiding foods or fluids that have a high salt content is very important because high salt intake results in fluctuations in the inner ear fluid pressure and may increase the symptoms. A diet high in fresh fruits, vegetables and whole grains, and low in canned, frozen or processed foods is suggested. Also, a 1,000 mg sodium intake diet is usually recommended. So cut down on the Rold Gold and sink your teeth into a nice, juicy apple.

Caffeine is another thing to avoid because it has stimulant properties that may make the symptoms worse. Caffeine also may make tinnitus louder. Large amounts of caffeine may trigger a migraine headache, which would add extra adventure for thrill-seekers. Helmet not included.

In the beginning, it was extremely hard for me to commit to this because caffeinated products were the end all, be all of my existence. Limiting my consumption of coffee and chocolate was just as bad as watching your best friend walk away with the person you’ve had the longest crush on. However, by doing this, my bouts of the disease have become less frequent and I’ve only had three episodes within the last two years.