Susan Papa

As long as there was a glimmer of hope I vowed to never give up.

Diagnosis: Ménière’s Disease

I was first diagnosed with Meniere’s disease was in 1991. My symptoms were mild in the beginning – uneasiness, nausea, a feeling of fullness in my head. They were generally worst when I spent too long looking at a computer screen. When I began had a vertigo attack I would take phenergan – I’d do anything to stop the spinning!

Initially I was given the usual treatment of diuretics and potassium. I also had fistula surgery to see if that might be causing my vertigo, which gave me the worst ear pain I’d ever experienced and didn’t fix a thing. Next on the list of ineffective treatments was endolymphatic shunt surgery to drain the fluid from my inner ear. This initially helped and my symptoms subsided for a while, but not for long. When my symptoms returned I didn’t know where to turn.

I lived day to day, never able to plan anything and not going far from home. On good days it was all I could do to put one foot in front of the other. I was afraid to drive because I had gotten violently dizzy one time, and even though I was not far from home I had to pull off the road because I was afraid I might cause an accident.

After this episode I became anxious about everything. Am I going to get sick today? Am I ever going to get better? One of the hardest things for me was that I knew I couldn’t be counted on for anything – not by my friends, my family or myself. Meniere’s disease can be devastating and humbling because you look fine on the outside but inside you’re falling apart. You begin lose your self-confidence to do even the simplest tasks, and you wonder if you’ll ever be the same again.

During this struggle I learned that I also had BPPV (benign paroxysmal positional vertigo). The only good news about BPPV was that the symptoms didn’t last long. I learned that proper head positioning was the best way to avoid BPPV. This knowledge gave me a little bit of control over BPPV compared to Meniere’s, but not much.

I felt depressed and anxious waking up each day wondering if I’d be violently ill and in bed all day or could I risk driving to the grocery store. Even in a big city like Houston it was difficult to find proper medical treatment for such a specialized problem.

I was talking to a friend who knew I was struggling and she mentioned a physical therapist named Kathleen Stross who treats balance disorders. What? Someone who actually specializes in treating patients like me? I was so excited that I contacted Kathleen that very day.

Even at my first appointment I knew I was with someone who understood how I was feeling. For the first time in years I could see a light at the end of the tunnel.  It was a dark tunnel, but as long as there was a glimmer of hope I vowed to never give up.

I became determined to read everything I could get my hands on about vestibular disorders and luckily for me Kathleen had lots of short, informative handouts from VeDA in her office. I took every handout I saw and ordered almost every publication VeDA offered. I was still on diuretics and potassium and continued to experience Meniere’s symptoms so I read the book, “Meniere’s Disease – What You Need To Know.” Around that time VeDA published a low-salt cookbook. I had no idea that almost everything I was eating was FULL of salt! That very day was when my life began to change for the better.

I cannot stress enough how important it is to educate yourself on what low-salt means and how many food items contain huge amounts of sodium. Low-salt does not mean to stop using the salt shaker. It means to avoid pizza, canned/instant soups, butter, bread, cheese, salad dressing, baked goods (baking soda & baking powder are HIGH in sodium), cured deli meats and almost anything in a box or a can. I had been so sick before finding this book that I was willing to try anything to avoid a Meniere’s attack. Slowly, by changing my diet, the fullness in my ear disappeared, my tinnitus was almost gone, and I rarely had a Meniere’s attack. I never imagined that something as simple as eating a low-salt diet could have such a profound impact on my life.

At the same time I had to learn to advocate for myself. I started asking lots of questions when eating out and learned never to eat something just to be polite. I learned that being different is OK because the alternative – eating whatever is put in front of me, even if it causes me to experience Meniere’s symptoms – was not acceptable. But it is oh so worth being able to wake up and know that today is going to be a day without dizziness (knock on wood). I stick to my low-salt diet every single day – fresh fruit, vegetables, meat, fish, chicken – and never eat fast-food or anything processed. The better you feel, the easier it is!

I still experience BPPV from time to time and Kathleen is there to move my head and get those particles back where they belong. She gave me eye exercises when I couldn’t look at a computer screen, read a book or look through my camera lens. One of my passions is photography and I was crushed when I couldn’t look through the lens of my camera without getting dizzy.

I’m seeing Kathleen once a month now to help me with balance exercises. With her help I’m able to continue to pursue my passion in photography, which I’m very grateful for. Most importantly, Kathleen gives me the emotional support that vestibular patients need so much.

The best news is that I am no longer on a diuretic or potassium and have not had a Meniere’s attack in THREE YEARS!! I attribute this to my low-salt diet and the vestibular rehabilitation therapy Kathleen provides. I am living proof that changing your diet and practicing VRT can do wonders! A few years ago I never imagined that I could be living the full life that I am today. I am thankful to Kathleen for giving me moral support, the confidence that I could get better, and for getting those pesky particles back into place; to Dr. Williamson at Baylor College of Medicine in Houston; and to VeDA for all the helpful, life-saving information you provided me those many, many years ago.

Even though I feel much better today I continue to support VeDA because I recognize how important it was for me to have access to publications that helped me understand my condition, and I want to make sure those resources are available to other vestibular patients who are still searching for a diagnosis. Hang in there! There IS a light at the end of the tunnel.