Meniere's and Me

April 24, 2018

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Music fans were shocked and saddened at the announcement by ‘80s rock icon Huey Lewis that he’s canceled the upcoming tour of his band The News because he’s suffering from Meniere’s disease, a mysterious inner ear condition that’s caused hearing loss, painful distortion in his ears and attacks of dizziness that make it impossible for him to continue performing. The news sent fans rushing to the Internet to look up Meniere’s disease. But I can offer you something better: a firsthand account from another singer who’s faced the same devastating diagnosis.

In her "day job," Laura Ainsworth is a wonderful radio news and comedy writer who's helped me out with many projects over the years (you might recall her topical parody songs on my call-in radio show, or know her from the credits for my TBN series, where she and her husband do my guest interview research.) But she’s also a fantastic retro-style jazz singer with three acclaimed CDs and a new best-of vinyl LP to her credit. For a long time, she’s battled Meniere’s disease, which threatened to destroy her music career. I asked her to share her story. I also highly recommend her terrific albums, which you can find at www.lauraainsworth.com and follow her online at www.facebook.com/lauraainsworthsings and on Twitter at @LauraAinsworth1.

- Mike Huckabee

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MENIERE’S AND ME

By Laura Ainsworth

The vertigo attacks came first. The initial one literally threw me out of bed early one morning, onto the floor, as the room spun violently around. I crawled to the bathroom, gripping the floor as though the Earth were trying to throw me off. “Dizziness” doesn’t begin to describe the sensation. This was like a careening amusement park ride that wouldn’t stop. It was the most bizarre thing –- I could stare at one spot and see everything in my field of vision moving diagonally. I felt a heaviness in my left ear and heard a constant loud ringing. We won’t go into the horrible nausea and dry heaving, except to say that the whole wretched experience, like every one of the countless attacks to come, lasted seven hours.

The first ear specialist didn’t think my symptoms fit the “pattern” of Meniere’s; he told me matter-of-factly that I had either multiple sclerosis or a brain tumor and scheduled an MRI to find out which one it was! I spent three days – over my birthday weekend – waiting to get the results and find out which of these two disasters had befallen me and perhaps would even kill me. So when the MRI came back clear, it was almost a relief to get my correct diagnosis: Meniere's disease. Fortunately, that doctor’s diagnostic skills were no better than his bedside manner.

But the cruel attacks continued and could come out of nowhere. Sometimes I’d go through periods of relative remission, and I managed to do some stage work, though not much. It was like playing Russian roulette, never knowing if I was going to get through a show (I once had an attack backstage and had to be carried out in the dark by two actors, one on each elbow. Appropriately enough, I sang “Someone To Watch Over Me” while hanging on to the mic stand for dear life, then they carried me back off in the dark). As time went by, the attacks became much more frequent and incapacitating. I tried everything possible, including a severely low-salt diet, but it just kept worsening. Eventually, I started to have sometimes two attacks a day, each one lasting seven hours. It was just hell.

The hearing loss was gradual, and in my case, only on the left side. Once my left ear was deemed essentially worthless, my doctor at UT Southwestern Medical Center’s laryngology department did a series of outpatient treatments, going through my eardrum (yeow!) to inject the antibiotic gentamycin, which destroyed the tiny hairs called cillia in my inner ear and prevented the transmission of balance signals. (This treatment pretty much finishes off any remaining hearing as well.) Through this gradual process, I had to repeatedly lose my sense of balance and figure out over and over again how to walk and be oriented. The brain essentially “rewires” itself.

The vertigo attacks were finally over, but I was left with no hearing at all on the left except greatly distorted loud sounds (such as from a sax or other horn) and a constant, loud “whooshing” tinnitus. I was back onstage singing live lounge/jazz, but my poor brain had a hard time processing the mess. My latest album, “New Vintage,” earned me my solo debut at Manhattan’s Metropolitan Room, which was a huge thrill and honor, but getting through the show was like swimming through molasses. Sadly, I wasn’t enjoying singing live anymore. Just as bookers were starting to contact me, I was almost ready to quit – until a few months ago.

After more medical tests and researching various options, I got an amazing hearing system – brand name Phonak – consisting of a tiny mic and transmitter on the left ear and a receiver on the right, enabling me to pick up sound from both sides. The effect is stunningly well balanced, and I’ve had it out for some “test drives” at a couple of local jazz clubs. What a difference! Even with the players and monitors to my left (impossible before), I was just fine. No distortion. When I came offstage, I felt energized, not exhausted.

I do still have tinnitus, but that’s more of a problem when things are quiet, not while I’m singing.

They still don’t know what causes Meniere’s, but at least there are effective treatments for the vertigo, and hearing technology has come a long way. I wish I hadn’t suffered with the attacks for so long, but doctors typically hesitate to do hearing-destroying treatments or surgery until the hearing is mostly gone. Really, I think that in the case of Meniere’s, they should be more open to doing what it takes to get rid of the vertigo, because the illness is progressive and is likely going to steal the hearing anyway.

I try not to think about what kind of career I might have had without the limitations that came early-on with Meniere’s. One upside: The challenges of live performing pushed me to concentrate more on studio recordings because the conditions can be controlled, and I have some work I’m really proud of. Still, now that I have my new “ears,” I plan on doing more live singing because it’s fun again.

To Huey Lewis: Huey, I am a huge fan, and I feel for you very much. If you ever want advice on how to deal with this, please get in touch. Be glad it didn’t hit you earlier in your career, because you’ve been able to make great music for a long time. I hope with all my heart that you’re able to do it again. And to anyone else suffering from Meniere’s, please don’t give up hope. There’s still no cure, but some great advances are being made. I’m living proof.

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Comments 1-2 of 2

  • Laura Ainsworth

    12/11/2018 12:55 PM

    Just saw Omer's letter from October. Omer, bless your heart. Wow, 20 years of that --- it was about 10 years for me, until I got the treatment described in my essay. People really do take their equilibrium for granted, don't they? Thanks for writing and I hope you are doing well.

  • Omer Causey

    10/29/2018 12:54 PM

    I had a remarkably similar onset of Meniere's. Woke at 3AM with projectile vomiting and extreme vertigo. Spent the next three weeks on a mattress on the floor so I could crawl to the bathroom. Same routine on diagnosis. Lost about half my hearing on the left side almost immediately, with a mixed and varying frequency loss. That pretty much ended my work doing jury trials.

    The vertigo prevented me from flying and most driving. I was fortunate that my vertigo attacks were generally preceded by an "aura" that gave me a minute or so to get to a safe place. Gradually was able to gain some control over the vertigo with very strong antihistamines, prednisone, decongestants and Bonine. Eventually, it went away after nearly 20 years, but I remain unsteady in high places without solid visual reference points.

    Not for the faint of heart.