Part II – You Spin Me Round.

This is what vertigo feels like.
This is what vertigo feels like. Only worse.

(reposted due to problem with first post)

I suffered many bouts of vertigo over the next couple of years, events so sudden and violent that they would cause me to fall to the floor.  Some of these ‘drop attacks’ were quite scary.  Following an episode, I would sleep for 12 or more hours, waking up exhausted and foggy the next day.  I tried medication, but the Meclizine made me groggy, the diuretics had no noticeable effect, and the Valium only seemed to take the edge off of the anxiety I experienced with an attack.  It was miserable and frightening and hard to explain.  One MD patient described vertigo like getting really drunk and then getting on a carnival ride.  Sounds fun, huh?

My equilibrium was in constant flux; some days I would walk holding the wall to keep me from tipping over, and some days my horizon would shift and I had to tilt my head to the side to compensate.  Even on days with no vertigo, I never felt ‘right’ – it’s hard to explain, but it was almost like I was always in suspense, waiting for my next round of extreme spinning and nausea.  My drop attacks had been coming around once a month for quite a while, but it was unnerving when I didn’t know what to expect, or when.

Meniere’s disease can go into remission for weeks, months, or even years; unpredictability is its nature.  Finally, just as suddenly as they had begun, the vertigo episodes stopped.  It is an uneasy pause, though, because I don’t know if or when it will return.  I still have what I call ‘the woozies,’ where I get what feels like the precursor to a vertigo attack, but the vertigo never comes.  My eyes stop focusing, my balance seems to leap, and mentally, I fade.  Sometimes my ears feel full, like I need to yawn to make them pop, but they won’t clear.   These symptoms are very common with Meniere’s sufferers.

Hearing loss associated with this disorder is generally at low frequencies, or sometimes at both low and high frequencies.  Couple that with my existing mid-range loss, and I knew I was in trouble.  I began to worry about total deafness.

I found myself struggling more and more to hear people talking to me.  I hated to use the phone, I tried to avoid crowds, and I relied on the closed-captioning option on my television.  I complained to no one in particular that people were mumbling; and I started to rely on the ‘smile and nod’ to get me through conversations I couldn’t hear, rather than continually asking the speaker to repeat himself.  I’m sure that sometimes I appeared uninterested in a group conversation; people who didn’t know about my hearing might have thought I was rude or not paying attention to them. 

I knew I was missing a lot of things: my husband and sons would summon me to the porch to hear the frogs, or crickets, or owls, or coyotes in the night.  Rarely did I hear them.  The rain would have to be coming down in buckets before I could hear it from indoors.  I missed a lot of jokes and conversation because I could not keep up, and I didn’t want to ask and expose my disability.

Sometimes, I just wanted to be by myself with my silence; it was so much easier than straining to hear, and mis-hearing anyway.  Often my mistakes in hearing were pretty funny; the difference between what I thought I heard and what was actually said could be quite amusing.  I remembered Pa doing the same thing, and suddenly, it wasn’t as funny as I thought.  We would all laugh, but he was doing the best he could, and now, so was I.

Continued in Part III

Part I – Listen Up!

The phenomenal Helen Keller in 1948.

Blindness separates us from things, but deafness separates us from people.
Helen Keller

My life changed last week, in a big way.   I’ll tell you how, shortly.

First off, some background: as a child, I suffered from frequent ear infections.  It seemed that every cough, wheeze, or sneeze heralded a virus that ended up lodged deeply and aching in my middle ear, where my only relief was couch time with glycerin drops and a heating pad.  I spent a lot of time on that couch.  During that time, I realized that I always had a ringing or buzzing in my ears that nobody could hear but me.  My father had it, too, and he taught me the name for it: tinnitus.  When my elementary school administered hearing tests to the students, I was sent home with a note to my parents, encouraging them to take me to a doctor for further examination.

I remember having the hearing test with the booth and the headphones and the tones of varying range and volume.  When I came out, the doctor showed me what he called my ‘cookie-bite’ hearing loss: normal hearing at the low and high ends of the spectrum, but a deep U-shape curve in the middle, demonstrating mid-range hearing problems.  The mid-range is where conversation takes place.  He explained to me and my parents that I had ‘nerve damage’ hearing loss, and he said there was nothing that could be done about it.

Over time, I got used to not hearing what others heard, and I tried to become a better listener to compensate.  I would sit at the front of class in school and take copious notes.  I tried to focus closely on what people said, and it helped a lot if I could see their faces.  I often asked people to repeat what they had said, or I would ask a person beside me to relay the information.  Before long, it was second nature to me to compensate for my bad ears.

Fast forward to a little more than ten years ago.  I was sitting at my desk at home when suddenly it felt like someone had come up behind me and tipped my chair backward.  I called out to my husband and clung to my desk for dear life before realizing I wasn’t tipping over and there wasn’t anyone behind me. 

Mr. Stuck came to help me out of my chair, and I soon realized that my balance was gone, my vision was distorted, and the room felt like it had gone sideways.  Any movement of my head caused a swell of nausea; I told him to take me to the bathroom in case I had to throw up.  Fortunately, that didn’t happen, but I sat on the bathroom floor against the wall for half an hour, trying to figure out what had just happened to me.  Mr. Stuck put me to bed, where the vertigo eventually calmed down. 

I went to the doctor and after several different tests was diagnosed with Meniere’s Disease (MD).  Meniere’s is a disorder of the inner ear, characterized by vertigo, ringing in the ears, a feeling of ‘fullness’ in the ear, and progressive, intermittent hearing loss.  It can be treatable, but is not curable.  I noticed that when I had a vertigo episode, it seemed as though my ears were stuffed with cotton.  I read everything about MD that I could get my hands on; all of it said the same thing: most sufferers will experience intermittent temporary hearing loss, but for some, the loss would be permanent.  Great — just great.

To be continued in Part II

photo credit uppityrib