Coping with Meniere’s
Dinah Helpert was washing dishes one normal February morning in 2016 when she suddenly felt herself flying across the kitchen floor.
“I was sick. I threw up … I didn’t know what was going on, sweating, and everything, and Fred called an ambulance because we just didn’t know what to do,” she says of her first Meniere’s Disease attack.
She and her partner Fred went to the emergency room that morning, but left with no answers. Later that night, getting ready for bed, she had another terrifying episode – losing her balance, experiencing a sensation of being pushed to the floor, and getting violently ill. Over the course of the next 11 months Dinah was taken to hospital in St. John’s by ambulance nine times.
Eventually, after a battery of tests and trips to several specialists, she was diagnosed with Meniere’s Disease.
Meniere’s is an inner ear disease, typically affecting one ear, causing pressure or pain in the ear, resulting in severe cases of dizziness, vertigo, and often a ringing or roaring noise in the ear.
Although Meniere’s can affect anyone, it’s most often diagnosed in those in their 40s and 50s. It’s a chronic disorder and, while there may be temporary relief, there is no cure.
Never Far From My Mind
For Dinah, who’d already had some hearing loss, the symptoms would often appear out of nowhere, she’d lose balance and be violently ill.
“That was February 2016 and it’s never away from my mind,” she says, describing the torment she’s experienced since her first episode. “I went through so many different experiences, not only sick but it’s like your head is full … you have to turn your whole body to look, because you can’t turn your head – your eyes wouldn’t go with you.
“When you got in bed at night, and everything got quiet, all the sounds of the day were in your head. You’d put your head down and all the buzzing, and all the noises would fill my head. And even though my pillow was soft, it felt like a brick.”
There are many accounts of how Meniere’s affects people, but the “fullness” Dinah describes as her warning sign, is one of the most common. Now, whenever she has a funny feeling in her head, her heart lurches.
One of the most difficult parts of having an illness that’s not well understood is sufferers are always looking for correlations between their actions and the difficult symptoms. Dinah, for example, has terrible acid reflux and believes it is tied in with all the stomach trouble she had as a result of Meniere’s.
“Just because it happened at the same time. I mean if I grew a mole on my face, I would probably say it was the Meniere’s,” she says, laughing, but admitting that she was always looking for ways to control the symptoms.
‘Then You Worry’
“The first time it happened it just came out of the blue … (A doctor) told me no cheese, no red wine, and no dark chocolate. I said to him, ‘What’s the point of living if you can’t have any of that?’ I am a woman after all … Then it was salt,” she says. “I remember one day I was looking in the cupboard. I was so hungry, I opened up the cupboard doors and was looking at the labels on everything. I was afraid to eat anything. Everything has salt in it.”
Dinah changed her glasses, stopped drinking tea and wine, took various medications; all the while, she was wondering whether they were making her sicker. Dinah returned to work as a secretary at the Marine Institute, and had more episodes – once in a stairwell – but was taken off work by her doctor. She spent most of her time curled up on the couch in the family room.
“The TV screen didn’t look 3D, it just looked like flat paint. I’d close one eye to try to watch the TV screen. I was just curled up in the corner for months. It was awful, I went through more Gravol – Gravol becomes your best friend,” she says. “You can’t watch TV, you can’t read. I’ve said to Fred, ‘Life is not worth it.’”
Dinah’s children were worried, she couldn’t drive, she lost 18 pounds off her tiny frame, and several times she’d have to leave grocery stores or restaurants for fear she would have an attack and people would think she was drunk, being held up by Fred and walked to the car.
“Then you worry, you hope your children won’t get it. I’m sitting here now, and I’m not feeling it, but as soon as that little tinge comes in my head it comes right back, and it’s like your life has changed because it’s hard to explain.”
A Turning Point
For Dinah, relief came in two forms. Finding out she wasn’t alone, and a risky procedure, which could potentially make her permanently deaf in one ear.
A few months after being diagnosed, a neighbour told Dinah and Fred about the Meniere’s and Tinnitus resource group through the Canadian Hard of Hearing Association – Newfoundland and Labrador. While she doesn’t attend every meeting, Dinah says it was an incredible comfort to see the issue is so common and that she could have had it worse.
“When I was there listening to people with different issues I realized I was lucky. Some people have noises all the time. They hear their heartbeat in their ears, it’s different and it just never goes away,” she says, noting that she met another sufferer from her area and they keep in touch. “It gave me hope.”
Dinah also had three injections of Gentamicin in her ear. The antibiotic – toxic to the inner ear – causes deliberate damage, reducing the balancing function of the injected ear, while the other ear takes over the responsibility of balancing the body. This is usually a last-resort treatment and likely accelerates hearing loss.
For Dinah, the first two shots didn’t take, but the third did. She says she’d recommend it to anyone suffering from Meniere’s, regardless of the risks.
Dinah has been in remission from her Meniere’s since December 2016. Since then, she’s been back at work, keeping active, and living her life fully. Although she has recently been experiencing mini attacks, she won’t have another shot unless she has a full attack. While she’s worried that day may be coming, she’s coping in spite of her disease.
“It’s slowed me down a lot. Trying to read different things, and I can’t walk a straight line any more. I wobble, now it’s not that noticeable, but you know … I’m afraid to lift my weights too heavy now because of the pressure. Everything; sneezing, coughing, going to the bathroom, all your pressure goes up here,” she says, pointing to her head.
While there is no cure for Meniere’s, there is a lot of hope, she says, and getting help can be beneficial to sufferers. If you suffer from Meniere’s or Tinnitus, the Canadian Hard of Hearing Association – Newfoundland and Labrador offers support through groups, guest speakers, and awareness. Reach out to discover how you can learn new ways to cope.