Meniere’s Disease: It’s like a perpetual thrill ride without the fun

15 Jul

An inner ear disorder makes me avoid quick movements, Japanese cartoons, patterned floors and Joy Behar.

Meniere's diagram

My head is its own perpetual thrill ride.

If I move my head too quickly, everything starts spinning. Floors feel like they are dropping or being carried away by ocean waves. If I’m around a strobe light, the air around me starts to pulsate and the blinking colors replay in my head for hours.  If the room is quiet, I can hear the sound of buzzing  bees or feedback squeals from a microphone. Sometimes, I can barely hear at all even though I’m surrounded by noise.

Welcome to the world of Meniere’s Disease. It’s a chronic condition caused by an imbalance of inner ear fluid that creates spontaneous vertigo, tinnitus and hearing loss.

The inner ear is home to a fluid-filled cavity that is lined with hair-like sensors. The sensors respond to movement in the fluid and help the body assess motion, balance and sound. However, this fluid needs to retain a certain volume, pressure and composition so that the sensors can work properly. When the fluid goes rogue, people like me end up hugging a floor.

My jacked-up ear fluid can make an ordinary day feel like a trip to Six Flags, minus the $64.99 admission fee. When my inner ear rebels, I feel the sensations you would feel on the Tilt-A-Whirl ride or after a game of Dizzy Izzy. Walking is difficult, but staggering around and falling sideways are very easy. Face-to-face conversations are challenging because my rapidly darting eyes make others think I’m watching a ping-pong game while I’m talking to them.

There is no cure for Meniere’s, and treatment options are limited. My diagnosis 14 years ago led to me limiting my salt consumption so that my body doesn’t retain extra fluid.  I take Antivert to reduce the vertigo, antihistamines to reduce fluid in the ear and Valium to slow everything down when the inevitable episode does hit. I also do my best to avoid things that I know will trigger an episode. My list of triggers is weird and sad:

  • Police cars:  I react to the flashing blue lights.
  • Japanese  cartoons:  I am living proof that some folks fall out watching these.
  • Patterned floors: I can’t  walk on them because the patterns look they are moving.
  • Ocean  waves: I used to love sitting on the beach and watching the waves roll in.  It was  gloriously peaceful. Thanks to Meniere’s, my body feels like it’s being pulled and pushed along with each wave.
  • Jazzercise and  Zumba: The quick  movements make me dizzy. I am also ridiculously uncoordinated.
  • Light  shows: Twinkling  Christmas lights are so beautiful and playful, but I can enjoy them only in very small doses.  Sadly, I will never be able to enjoy a  Pink Floyd Experience laser light show at my local planetarium.
  • Electronica music: Not a  huge personal loss.
  • 3-D and IMAX movies: I felt cheated by having to watch the flat screen version of “Avatar.”
  • Airplanes: Take-off  and landing mess with my head. I confess to using the helpful bag located in the seatback pocket MANY times.
  • Amusement  parks: When your head is its own thrill ride, who needs amusement parks? I do. I used  to LOVE rollercoasters.  When the Rip Ride RockIt opened at Universal Studios, I was determined to ride it.  I knew better. The ride video, which I forbade my family from purchasing, shows my eyes rolling around my head and my numerous attempts to keep from  spewing. I struggled with walking and nausea for two days after that  incident. Today, my amusement park participation is limited to holding    purses and water bottles while my family rides.
  • “The View:” I’m not kidding. The women on this show trigger episodes of vertigo and  hearing loss for me.

Despite medicines and trigger avoidance, Meniere’s episodes can still pop up out of nowhere. The inner ear decides to proclaim, “I OWN YOU! Sit your butt down and don’t move!” You have no choice but to comply. I’ve met other Meniere’s sufferers who have been bedridden for days because the spinning won’t stop. A few are afraid to drive because they fear a sudden attack. The symptoms can be so unpredictable and debilitating that some Meniere’s sufferers are unable to work.

Thankfully, my symptoms have not incapacitated me for long stretches. I’ve been able to accept the episodes, but I certainly do not like them. My doctor suggested a surgical procedure that would stop my episodes by destroying the inner ear and its connecting nerves.  The procedure would also destroy my ability to hear.  Most people have Meniere’s in only one ear, and after surgery, the other ear easily compensates for hearing loss. However, Meniere’s impacts both of my ears and has already caused some permanent hearing loss on each side.

Even with the promise of relief, I don’t want to have the surgery.  As much as I hate the spinning, buzzing noise and nausea, I love the sounds of my life – my kids’ voices, music, laughter, rain and even bubble wrap.

I also love thrill rides –  but only when they’re not in my head.

21 Responses to “Meniere’s Disease: It’s like a perpetual thrill ride without the fun”

  1. Marie Trelawney December 24, 2013 at 12:59 AM #

    TRY BETAHISTINE…..After 3 decades of menieres, it CURED my menieres and literally saved my life.

  2. dafyre September 2, 2013 at 12:23 AM #

    Hey Kim,

    Just a question about your hearing loss… I am (mostly) deaf on both ears as a result of a different inner ear problem. If the surgeries will completely kill your ear, you could check into getting a Cochlear Implant. My Pops has one, and it has been amazing for him. He’s worked his way up to about 60% comprehension. The biggest change has happened in the last 5-10 years whith the upgrades to the external pieces, so it’s not like you have to have the units for 30 ears for them to be helpful (admittedly, he’s had his since 1987).

    • Kim Keller September 2, 2013 at 1:11 PM #

      I definitely have to check that out. Thanks for letting me know about that option.

  3. Chantel August 29, 2013 at 9:10 PM #

    My husband was diagnosed about 4 years ago has lost a significant amount of his hearing. this disease is so terrible and I’m at a loss as his best friend and no cure. thank you for sharing this…

  4. bullie62 August 28, 2013 at 12:59 PM #

    This is the reason I won’t talk about my Meniere’s on my blog. Once ya do, inevitably you’re going to get people claiming they’ve been HEALED by “this” “that” or “the other”. ALL BUNK!

    I’m a bilateral sufferer, with attacks happening daily. This blog was brought to my attention yesterday, and later that night, I was downtown in a big city, and had an attack. I struggled to get from one place to another, inching closer and closer to the train to get me back home, to my safe haven; the bathroom floor.

    EVERYTHING was setting more spins off… the lights, the cars, the sidewalk, the people walking past me, the sounds, the stress!!! And I must have looked like a drunk, wobbling side to side, trying to hold onto the wall of every building I passed……

    This is my life. I’m like the Author…. I won’t get the surgery to take the spins away, because I don’t want to go completely deaf. The hearing loss I have now is bad enough, but living alone, the wee bit of “sound” I hear is my only friend.

    It’s a very lonely existence for those of us who suffer with this disease, without a partner or spouse…. I can’t make plans with friends, because I’m always cancelling due to an attack. I can’t drive far for fear of having a bad attack and getting into a wreck. I can’t hold a job, I can’t dance anymore, I can’t go to events when I AM feeling well, unless they’re in a very quiet place, and someone is there to watch over me. That doesn’t happen often. Once or twice a year, maybe…..

    Meniere’s has stolen my life, ruined my credit, ripped my dreams to shreds and left me fighting for my life on so many levels. Writing is what has given me a semblance of joy, when I’m able to sit for a while and FOCUS. I am grateful for those moments.

    Moments are all I have left, due to this disease. I wouldn’t wish it on anyone!

    • Kim Keller August 28, 2013 at 2:21 PM #

      Thank you for sharing your story. I’m sorry you’ve had such a rough time with the disease. I wish there was more the docs could do, but I’m with you on the surgery — it’s not worth losing the little sound we have left. I sincerely hope you can find some relief. This disease sucks!

  5. Cristen P August 27, 2013 at 11:16 AM #

    I am an audiologist who works with several Meniere’s patients. I work with their hearing aids, but do not work with an ENT. I work with the ENT as they are treated there, and I reprogram their hearing aids with the ever-changing audiograms they bring to me. Thank you for a very clear insight on this fascinating disease. I hear many of these symptoms from my patients suffering with Meniere’s. They are dedicated to finding normalcy in their lives, and I just help them hear as well as I can. Your words will provide comfort to some, and I will pass this along.

    • Kim Keller August 29, 2013 at 10:26 PM #

      I am so glad you found this helpful. I hope your patients will realize they are not alone.

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