Meniere’s Monday – A bit of history

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It’s Monday. Yes – the dreaded beginning of the work week. No fear, gang. We can get through this.

Since I have chosen to use Monday as the day to update my Meniere’s condition, I thought this might be a good time to let you know a bit about the hard-to-explain, difficult-to-diagnose, ridiculous-to-treat, all-consuming, unpredicatable disease named after a French doctor, Prosper Meniere. In the late 1800s he concluded that vertigo stems from issues in the inner ear. Essentially, the inner ear produces excessive amounts of fluid, causing a host of annoying symptoms. Since Dr. Meniere’s initial discovery, doctors, scientists, researchers, and pharmaceutical companies have tried – without success – to treat this disease.

One of the biggest issues with treating Meniere’s is that it affects each individual differently. Some people experience mild symptoms while others suffer daily and have to relinquish anything resembling a normal lifestyle – including driving. Imagine a dizzy person on the road… Not pretty.

What are the symptoms, you ask? (I’m assuming, of course, that you asked…)
1. Dizziness: This happens if I stand too quickly, turn my head in a certain way, see flashing lights or flickers, get too hot, am in a crowded space, ride as a passenger, fly in an airplane (as opposed to using my own wings), am in high altitudes, exercise vigorously, have a cold, or sit/stand too high.
2. Ringing in the ears: Mine is intermittent and ranges from a high-pitched squeal to a guttural train sound. I get this more frequently at night or when my ears are full.
3. Hearing loss: This fluctuates and is annoying. Some days, I can hear just fine. Other days are dreadful and I can’t hear a thing. Then there are the days when things are too loud. I carry ear plugs, have a hard time listening to music in the car, can’t sit in noisy restaurants, and have issues with loud voices. BUT – I use the closed captioning on my TV and prefer texting to talking on the phone because I can’t understand the words.
     a. Distortion: This is a byproduct of the hearing loss. To me it sounds like everything comes through a busted speaker. Think Charlie Brown’s teacher buzzing in your ear.

     b. Autophony: Another byproduct. This one is loads of fun. It’s when the sound of my own voice bothers me. OR – even better – when I can hear my heart beat or my breathing sounds extremely loud. This symptom alone has kept me from singing – something I have been doing since childhood.
4. Fullness and pressure in the ears: This is constant for me. I always feel like I need to pop my ears but can’t. This, too, adds to the hearing loss. If I switch sides when sleeping, I can actually hear the fluid dripping from one ear to the other.
5. Migraines: Yep. You guessed it. Headaches are dessert. I get them. Not often. But when I do, I need to sleep.

Two years ago, an audiologist diagnosed me with severe Meniere’s in BOTH ears. I am taking this thing one day at a time. My prayer is that I can share my experiences so that others with this disease know they are not alone, and those who know someone with the disease will begin to understand what it’s like.

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