Meniere's Disease Sucks, But Not Forever
By PatienceSharp on January 23, 2014
It started one Wednesday evening when I was working in the nursery at my church. I slowly became aware that I was off balance, dizzy, and shaky. I sat down and expected it to pass, but it didn’t. This uncertain, uncomfortable, quite obnoxious dizziness stayed with me as I sent kids home, walked to my car, drove home, and collapsed into bed. I woke up the next morning and felt fine, so I didn’t think too much of my symptoms the night before. The next afternoon it returned in a way that was unmistakable and uncontrollable. What had been merely ‘dizziness’ could now officially be categorized as ‘vertigo’.
- Vertigo: a sensation of motion which is associated with various disorders (as of the inner ear) and in which the individual or the individual’s surroundings seem to whirl dizzily
Vertigo feels like your brain is liquid. Nothing holds still, because oftentimes vertigo is accompanied bynystagmus. Remember when you were a kid and played on the merry-go-round at the park? Can you remember how after spinning and spinning, if you suddenly stopped the ride, the world kept moving? When the balance center of your inner ear isn’t working properly, the signals your brain receives about where things are in relation to your body go haywire. When that happens, it’s pointless to try and see anything because my eyeballs are literally twitching back and forth every second.
Vertigo leads to nystagmus, which leads to motion sickness, which leads to total incapacitation. When these symptoms come on suddenly, they are called a ‘vertigo attack’. When you have two or more vertigo attacks, you are well on your way to a diagnosis of Ménière’s Disease.
- Ménière’s disease: a disorder of the inner ear that causes severe dizziness (vertigo), ringing in the ears (tinnitus), hearing loss, and a feeling of fullness or congestion in the ear. Ménière’s disease usually affects only one ear.
No two people experience Meniere’s exactly the same way. One thing that we all have in common though, is an overwhelming fear of the next attack. I never know when one will hit. When one does hit, I have about 20 minutes before I can’t see and can’t walk unassisted. One time when I was walking my little ones home from school, my four year old had to lead me across the street. I had no choice but to put all of our lives in her hands. I had no way of knowing if the road was clear, all I could do was trust that she was making the right choice for us. We made it to our building, where I threw up in the apartment complex office, and I had to have the maintenance man take me up to our apartment in a wheelchair.
Another time I was at home with my two youngest when it hit. I set myself up on the couch and thought I would be fine. My toddler son went into the recycling bin, grabbed a tin can, and cut his hand. The four-year old started screaming that her little brother was bleeding. I couldn’t move, so I called him to me and desperately tried to see his hand. No matter how hard I tried to force my eyes to focus, I could not see how badly he was injured. I cannot express to you how terrifying that was.
After a few months of attacks coming two or three times a week, I began to figure out ways to cope. At the first hint of vertigo, I take my meds, and get comfortable in my bed. If I lie perfectly still, not moving my head an inch, the attack will last only an hour or two, and I will be able to get on with my day. If I can’t get to my bed, if the kids come in to hug me and plop down on the bed, or if I have to crawl to the bathroom, then the motion sickness will kick in, and the attack will not stop for 12 hours minimum. After the spinning finally subsides and I can get up again, I usually need 12 hours of recovery time. The mixture of the meds and the motion sickness tends to make me exhausted. So I lay there, very still and very quiet, and try to remind myself that at least I am not in pain. No matter how bad it gets, at least it doesn’t hurt.
For a very long time I didn’t leave the house unless I absolutely had to, and then never travelled more than ten minutes away by myself. This is why the Social Security Administration classifies Meniere’s as a disability.
It has been three years since my diagnosis, and several months since my last attack. Sometimes, just as mysteriously as the symptoms start, they stop. That doesn’t mean they won’t come back, and that fact overshadows everything else I do. When I was looking for an apartment, I had to get one close to all the services I could possibly need. When I was looking for a job, I had to find one where I would be free to hit the floor or bed if an attack hit. That wasn’t so easy. It is one of the major reasons why I do most of my work from home, and why I am so poor. The other reason is that I want to take care of my kids myself, and that precludes me from working 40 or more hours per week outside my home.
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