How Meniere’s Afffects Me

I am affected by Meniere’s Disease in my left ear, which I have not surprisingly had issues with most of my life. Here are the most prominent effects of the disorder I experience and how they are managed:

Pressure in the Inner Ear
Queen and David Bowie’s tune “Under Pressure” could practically be my theme song and more often than not when the pressure is at its worst, I will hum this song to myself. Simply put: I continuously feel pressure in my inner ear which often results in sharp stabbing pain. The pressure is very similar to the “plugged up” feeling people feel when they are congested or change elevation except in this case, I cannot relieve the pressure. The intensity of this pressure seems to have a strong relationship to other daily symptoms such as the dizziness, hearing loss and tinnitus.

Management: I now take a diuretic which helps to manage the fluid in my inner ear and as a result lessens some of the other symptoms.

Balance Problems
I have never been a particularly graceful individual but certainly capable enough of standing on two feet and walking in a straight line without falling over or running into something. Since March of 2009, I have felt dizzy, lightheaded and/or off balance most days. It is not wholly unpleasant at its mildest but on a normal day results in staggering, running into objects and falling down. This also can result in feelings akin to an out of body experience or a surreal effect I referred to as “feeling as if I am in a cartoon” as a child. Through testing such as an ENG, it has been determined that the nerve in my left ear which controls balance has been significantly damaged. This damage is progressive and irreparable.

Management: Padded walls and one of those inflatable sumo wrestler suits. I even play those Wii Fit balance games. All kidding aside, this is something I struggle with almost daily. Because my balance changes very quickly and usually without notice, I simply deal with it. If it is very bad, I find a place to sit very still and focus on one point until I feel I am able to move again. And I do actually play those games of Wii Fit. They challenge me to take control of faltering balance. Plus, I can’t get enough of the flying penguin trying to catch his fish. I am following the development of an implant which replaces the function of the balance nerve, similar to how a cochlear implant aids in hearing. I am hopeful!

Vertigo
I experience sudden attacks of vertigo. It is usually accompanied by nausea and vomiting. This most often feels like a very bad hangover without having had any of the fun to get said hangover. Less frequently I experience debilitating clusters of vertigo which leave me unable to perform more than a few basic functions for several hours after. Most often, these attacks come suddenly and without warning.

Management: While one of the side effects of valium is reportedly spinning, I take low dose valium at the onset of a vertigo attack to stop the spinning. In most cases, this has been highly effective at slowing the spinning so much that while still mildly dizzy; I can resume my normal activities. On horrific days, there is also the scopolamine motion sickness patch. It really is a shame that one cannot wear this patch for long periods of time because it is by far the best relief I get!

Hearing Loss
I lose hearing in my left ear for hours and sometimes days at a time. I also experience muffled hearing for days to weeks at a time, usually coinciding with the level of pressure I am experiencing. Over time, I am slowly and progressively losing hearing in my left ear, starting with the low tonal range.

Management: Eventually there is likely to be a hearing aid in my future, but until then managing the pressure in my ear with the diuretic has lessened the frequency of sudden hearing loss. The hearing loss has thus far been slow enough that I have been able to adapt to it fairly well. I do have a tendency to say “What?” a lot, however.

Tinnitus (Ringing in the Ears)
I experience tinnitus for minutes to days at a time. Since I have heard ringing or rushing in my left ear since I was around eight years old this is only annoying at worst. This combined with sudden hearing loss, however, typically is an indication that a vertigo attack is imminent.

Management: I am very fortunate. The ringing doesn’t bother me much. It seems to come and go regardless of the pressure and hearing loss. Listening to my iPod on low volume helps me sleep through it.

Cognitive Difficulties
During and after long episodes, I experience cognitive difficulties including slurred speech, stuttering, poor comprehension, poor memory and fatigue. The longer an episode continues, the worse these effects are. It is not only disturbing for me, but it can be very frustrating to those around me because I quickly and easily lose my train of thought or worse, forget to follow through on something. As a mentally active individual, this is by far the most difficult effect for me to cope with.

Management: Keeping episodes few and far between limits these effects.

Advertisements