When The Room Stops Spinning, I’ll Tell You About Ménière’s Disease
I don’t know where I first saw this, but I read once that if...
I don’t know where I first saw this, but I read once that if everyone threw their problems in a pile, and you could see everyone else’s problems, you’d race to the pile to get your own back. We never know what other people are dealing with. When I would walk through the airport after 24 hours of flying home from some international location, I always hoped no one would wonder why I looked like I hadn’t showered in awhile. I looked that way, frankly, because I hadn’t showered for many countries ago. I had tried to wash my face and brush my teeth in the tiny airplane bathroom or made do in the airport bathroom, but I definitely looked rough. It’s the same with running. I used to think people I passed looked slow and tired, but maybe they’d been out there for two hours. My measly thirty minutes was nothing.
I’ve been quietly living with something, sometimes not so quietly, for almost a decade. I have Ménière’s disease. I had no idea what this was until ten years ago. In a couple months, my youngest son will turn ten. Prior to his birth, I was shopping for books in the children’s section of Barnes and Noble. I was nine months pregnant and quite large; I’d only given birth to his brother fourteen months earlier. While in the book section, I suddenly felt extremely dizzy and nauseous. I sat on the floor and grabbed for something in which to lose my lunch. The nearby step stool was the only option. You can imagine the panic when an enormously pregnant woman is sick on the floor in a public setting. It wasn’t long before an ambulance arrived to take me to the hospital. I didn’t know it then, but this would be the first of many ambulance rides to come.
I was alright that first night after some fluids and rest. I had no more unusual issues until after my son was born and we had brought him home. Not too long into our return from the hospital, I was craving the coffee I’d given up while pregnant. After having that first glorious cup, I started to feel dizzy. It reminded me of something — the day at the book store. Gradually over the next year or so I would notice small dizzy episodes. Then it started to get severe. One night I woke up and crawled to the bathroom. I was so dizzy I couldn’t open my eyes. I made it as far as the bathtub before getting sick. I sat on the floor for almost two hours, unable to open my eyes or move due to dizziness. Something was not right.
After multiple doctor’s appointments, I was diagnosed with Ménière’s disease. This is an inner ear disease caused by unknown damage to tissue in the inner ear. For me, it’s only in my right ear. This damage causes hearing loss and random attacks of vertigo. There are very few signs an attack is coming. My symptoms include hearing loss and constant tinnitus (ringing) in my ear. You can whisper all sorts of things into my ear; I won’t hear them. The volume of the ringing varies. Some days I don’t notice it at all, and other days it’s all I hear.
The ear doctor told me to go on a low sodium diet, because they believed too much sodium could trigger attacks. That’s all the advice I got. Plus I received a prescription to help when the attacks hit. I also switched to decaf coffee, because caffeine seemed to have an immediate trigger effect. I was still trying to figure out how to lose the baby weight and had absolutely no idea how to manage a low sodium diet. I paid the grocery store dietician to help me with low sodium education. We discussed labels and alternatives and what foods are high in sodium. This helped for awhile, until I realized there was no way I could stick completely to this rigid diet while managing my full time job and two small children.
It also turns out stress is a trigger for the attacks. Shortly after my diagnosis, my career and family life had plenty of stress. I had two small children, a demanding career with a lot of travel and no breathing room. Plus I was drinking decaf, trying to eat a low sodium diet and generally not getting a ton of consistent sleep. I was also drinking a decent amount of alcohol socially and during work events. It was a bad combo.
A couple years after my son was born, I had my second ambulance ride. I was in a meeting at work and the room started spinning. I was able to hold onto the wall and make it to the bathroom stall before getting sick. It was not a pretty sight. It’s not easy to aim when you can’t open your eyes. My colleagues helped me out of the bathroom where I attempted to ride in a car home but was sick again. Finally, they called an ambulance because the dizzy wouldn’t quit. I rode in style to the hospital with some awesome meds and very nice healthcare workers.
There would be two more ambulance rides — one from the mall parking lot, where my husband had to convince the ambulance techs I was not drunk, and one from my parents’ driveway after Thanksgiving dinner. Both of these times the dizzy wouldn’t stop and I was sick. Only the trip to the hospital with the IV and meds stopped the spinning and nausea. There was such a feeling of peace lying in the quiet hospital room. I’m sure that was mostly due to the medication and also possibly due to the care and comfort of the doctors and nurses.
At some point, I was fed up. My local doctor tried steroid shots in my inner ear, but it didn’t seem to help. I went from having an episode once a month to having multiple episodes a week. My coworkers knew where my meds were in case an attack hit, but the meds would put me out of commission for a day each time. My family was scared. I needed more answers. Luckily I worked at a science company with caring owners and access to published scientific articles. One of my colleagues did a literature search for Ménière’s disease and found two top researchers in the US — one in Boston and one in Chicago. I called the Chicago office for an appointment.
My mom went with me to the Chicago appointment; we had an excellent trip despite the reason we were there. The doctor I visited, Dr. Hain, was well-known for his work with Ménière’s disease. I had to sign a paper agreeing, since I lived out of state, I would only get one consultation with him. After several screening tests, I was able to sit down with Dr. Hain. I will never forget what he told me, “First, I want you to know, no one needs to be debilitated with this disease anymore. We have many steps we can follow to help.” In that moment, I had hope. I knew he would help me. We connected over our common chemical engineering degrees and world travel, and he prescribed some new medication for me. I had a new plan.
Over the next few years, I improved. I wasn’t cured, but I had a better way to manage my attacks. Dr. Hain allowed me to come back for check ups. I had more time between attacks, and the severity was much less. I would get dizzy, but it wouldn’t last for as long. I had meds to treat the nausea. I would still go through phases where I knew I couldn’t go anywhere without my meds at arms’ length, and other times I didn’t think about it all. There were, however, some “memorable” moments during international travel. Alone on a flight to China, an attack hit. Luckily I had my meds handy in my seat, and I could take them and sleep for several hours over the ocean. Another time I was in a meeting in Belgium and had an attack in front of an entire room of colleagues. I was escorted to the bathroom and spent a very lonely day alone in a hotel, far away from my own bed.
I was on a bus once full of fellow industry colleagues en route to a reception. Someone in the seat in front of me asked if anyone had any Dramamine. I said I did; Dramamine was my fallback med when I didn’t have my prescription handy. I mentioned I had all sorts of anti-vertigo and anti-nausea meds with me. It turned out the gentleman in need also had Ménière’s disease. We kept in contact for several months following that bus ride, checking in on one another and giving advice on what was working for us. It’s hard to explain how awful vertigo is, especially severe vertigo with almost no warning.
Strangely, I don’t remember any major attacks during 2020. I had a few notable occurrences mid-2021. I was fortunate to have one last video call with Dr. Hain before he retired last year. I am now being treated at University of Iowa Otolaryngology, where we’ve made good progress in the last few months. I’ve reduced my daily meds and have some good on-the-spot meds with less side effects.
My son turns ten in a couple months, and I am reminded that I’ve been so fortunate to be his mom this long, as well as his brother’s mom. We all have problems and burdens to bear, and Ménière’s disease is mine. I’ve learned to accept it and manage it. Although I skip out of carnival rides and certain yoga poses, it would be easy to use this disease as an excuse to dial back on life. But I don’t. I traveled all around the world. I advanced my career. I didn’t let it keep me inside and alone. I could wait around for the next episode, or I could go forward and deal with it, if and when it happened, wherever in the world I was. I’m thankful to my husband and family for taking care of me and taking care of things when I needed to close my eyes. My family tries hard not to get frustrated with my hearing loss. I realize there is a difference between not hearing and not listening, and I promise it’s mostly the first one.
My experience makes me wonder what others are dealing with unseen. People are so much stronger than we give them credit. We can make the best of our situation. We can also have empathy for others. There’s no telling what mile they are on, how many hours they’ve been wearing the same clothes or what lies in their proverbial backpacks. If you’re suffering from Ménière’s disease, I see you. I’ll sit on the floor next to you until the room stops spinning. When it’s over, we will get up and keep being awesome.