House Institute patient Tamra King (60) is a New York City native who now calls Long Beach, California her home. She remembers being highly active since she was a kid, and once on the west coast enjoyed the surfing, swimming, and running along the sand she could now do right by the beach.
Today, Tamra is also a participant in the House Institute clinical trial on Meniere’s Disease. This study focuses on the repurposed use of montelukast, a previously FDA-approved medication known to help with allergy symptoms that may also have efficacy in alleviating symptoms in patients with Meniere’s Disease.
Ménière’s disease is an unpredictable inner ear disorder that causes fluctuating hearing loss, tinnitus, vertigo, and fullness or pressure in the ear. It is estimated that Meniere’s Disease affects about one out of every 1,000 people, with most patients between the ages of 40 and 60. Attacks may be brief, lasting for as little as 20 minutes, or may persist for as long as 24 hours. Often, symptoms can be completely debilitating.
We spoke with Tamra about her right-side Meniere’s onset, what life is like since her diagnosis, and what interests her about being active in a clinical trial with the House Institute.
What effects has Meniere’s Disease had on your life?
It was a long process to get a diagnosis. I woke up one morning and couldn’t hear out of my right year. Everything else was ruled out after a series of appointments with ENTs and specialists. At first, the Meniere’s was quite devastating. One of the hardest things for me was that it was disorienting to locate sound or noise. For example, you can’t tell where a plane is in the sky or if a car is coming. This is something that fluctuates. Losing my hearing in one ear through everything off, I had the balance issues plus severe vertigo attacks. Lucky for me, not too many, but I did have a lot of the dizziness.
What are some of the treatments you’ve sought to manage your Meniere’s?
I’ve tried everything: rounds of steroids, injections, the elimination diet for sugar/salt/alcohol. I did vestibular therapy, which helps, but doesn’t stick around long term. For me, sleeplessness and stress can be major triggers. I developed really bad tinnitus, so what’s helped the most has been my hearing aid. Other symptoms would ebb and flow, but the tinnitus was relentlessly constant. I’m 6 months into having my hearing aid, so right past the adjustment phase, and I’m so happy with the way it helps keep the tinnitus quiet.
What’s it like surfing with Meniere’s Disease?
Surging was incredibly difficult when in the throes of dizziness – I just kept tipping over. It’s almost been like learning again, but now that my symptoms are better, it’s worth learning. Surfing is fun, there’s never a bad day surfing, and you sort of just come to learn to accept where you are in the process. I take the illness where it is and meet it there.
Why are advances in Meniere’s research important to you?
No one should go through what I went through. There could be an answer or clues to better treatments if patient stories and experiences can be aggregated. The more information we gather, the more we can hopefully find out about patterns, and even common triggers.
What’s your advice for other people living with Ménière’s Disease?
You’re not alone. Stay off the internet to avoid catastrophizing the worst-case scenario. But, if you do log on, seek out the House Institute. They’re researching ways to help.