Lori Mayfield is founding a support group for people suffering from Ménière's disease, which affects hearing and balance. Bob Pennell / Mail Tribune photo - Bob Pennell

Woman with Ménière's wants to start support group

Lori Mayfield has one of those diseases that allows her to look completely normal to the rest of us.

The Medford woman can be seized by dizziness, nausea and vomiting at any moment. If that weren't enough, there's a constant ringing in her ears, too.

"The first time I got it I thought I was gonna die," she said one day last week. "I was in the parking lot at Harry & David. I didn't know what was happening. I opened my van door and barely got inside."

Mayfield has Ménière's disease, an affliction of the inner ear. The symptoms are similar to those of vertigo (extreme dizziness often coupled with nausea and vomiting), but vertigo is often limited to a single episode. Mayfield has been living with her symptoms since 2004.

"Sometimes it affects a person so badly all you can do is lie down and curl up in a ball," she said. "You can't move. When you do move it's like you're trying to go against centrifugal force."

Mayfield's struggle with Ménière's has prompted her to organize a support group for local people who are similarly afflicted. She's asking people with Ménière's, or symptoms that might indicate they have Ménière's, to call or e-mail her to arrange a time and day that works best for everyone to meet.

"I decided I was going to start reaching out to see who's out there who's got this disease," she said. "If we could get together, maybe we could help reduce the anxiety that comes along with this disease."

Ménière's can be embarrassing because someone having an episode can appear to be falling-down drunk to a casual observer. The vomiting that often accompanies the dizziness only adds to the impression of someone out of control.

"People think it's epilepsy," she said, "but it's not a seizure."

Ménière's is named for the French physician who first described its symptoms in 1861. It's an abnormality of the part of the inner ear known as the labyrinth, where balance is maintained. Researchers still don't know exactly what causes it, but they're beginning to think that childhood ear problems might be at least partially related.

That sounds plausible to Mayfield, who had lots of chronic ear infections as a child. There also might be a genetic component to Ménière's — her mother and an uncle both have it.

Some 615,000 people in the United States have been diagnosed with Ménière's, and about 45,000 new cases are diagnosed every year, according to the National Institute on Deafness and Other Communication Disorders.

While the dizziness can be immobilizing, it's at least temporary. The constant ringing in the ears — tinnitus — is mentally debilitating, she said.

"You just can't get away from it. You put your hand over your ear, thinking you can get away from it."

Sometimes the tinnitus increases just before an episode of vertigo.

"The ringing turns into a roar," she said. "It sounds like you're standing next to a jet airliner."

Mayfield has been trying to determine whether specific activities will trigger an episode. She's learned that looking from side to side while driving on an unfamiliar road may bring on symptoms. She recently climbed into a dizzying carnival ride to see whether its gyrations would trigger an episode, but nothing happened. "It's a strange disease," she said.

Mayfield still works as a caregiver for disabled people, but she's had to call her husband to "rescue" her during some serious episodes. She said the only good thing about her illness is that it's given her a new insight into the world of disabilities.

"It has enabled me to look at people with disabilities with a lot more compassion," she said. "I have a lot more insight into what they might be suffering."

Reach reporter Bill Kettler at 776-4492 or e-mail

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