Meniere's Disease: From a College Student's Eyes

In the fall of 2015, just weeks before heading off to Texas A&M University for my freshman year I woke up one morning, naturally, at around lunchtime, but something was off. I couldn't pinpoint what exactly was off, but I knew something wasn't right. I shrugged it off and the eerie feeling left me and I didn't think much of it. That is until I woke up spinning rapidly in a full blown vertigo attack the week I was supposed to head off for my freshman year of college. Talk about a game-changer.

I knew in that moment that I was not going to have the average freshman year of college. Many people say that it is tough to live on your own for the first time, but that you will have the time of your life. That is what I was looking forward to. Not so much anymore. I knew the chances of that were slim. Instead, I was going to have an even tougher time than the average freshman, adding in this whole health component.

Overly-anxious would be the best way to describe the way I felt when I started my first week of college in August, and really my entire freshman year. Was I nervous about hard classes? Sure, a little. Was I nervous about meeting people? Sure, a little. Was I nervous about being away from my parents for an extended period of time? Sure, I'll admit I was a little. Was I nervous about my questionable health? YES!

While at school I was never really completely sure if I had "Meniere's Disease" because no doctor had actually told me those direct words. It was actually a self-diagnosis, to be honest, but I was pretty sure of myself based on the symptoms I was experiencing. However, I had been prescribed the typical medication and protocol that somebody with Meniere's would be given a few months earlier: diuretic, low salt diet, no caffeine. But still, at the time those were given to me, I was not told I had Meniere's disease. Maybe the doctors weren't totally sure that I did indeed have MD, but I know that if I had been told that I had a 'DISEASE' I would have been alarmed and done some things differently looking back.

Regardless, I continued to fight through this treacherous disease through my first months of college nonetheless. Images of bathroom stalls and my dorm room bed are the only things that flash through my mind when I think about the fall semester.

I can honestly say that I was the most scared I had ever been in my life. I had no idea what exactly was going on inside of my head and why it was happening to me. Because it had never been confirmed that I had Meniere’s I hadn’t followed the low sodium diet very well at all and wasn’t helping myself in other aspects of life. My stress levels were sky high and I was eating cafeteria food from on campus. Most other people that suffer from Meniere’s will be the first to tell you- that is not a good mixture.

By the time late November rolls around short mini vertigo attacks of a few minutes become a normal occurrence, but not something that I didn’t think I couldn’t make it through to the Christmas break with. I had many close calls where I had to sprint to the nearest bathroom (if I could find one) and sit inside of a dirty stall and wait out an attack, and on occasion vomit because of how severe the vertigo was. But still, the attacks were only lasting around fifteen minutes or so and had been for a few months and I knew that I had a thanksgiving break and then finals left. Once I was done with fall finals I would be able to come home figure this out be on my way and get on with life.

Not. So. Fast. Thanksgiving break week rolls around and hits me like a freight train. The week before I had an attack that left me in a bathroom stall on campus for an hour during a class. But that was nothing in comparison to what hit me the night before I was supposed to come home for thanksgiving. I was playing in an intramural volleyball game with some friends and hadn’t been feeling great, but I didn’t want to spend yet another night of my freshman year worried in my dorm room about this stupid disease, so I decided to play. Mistake. A few minutes into the game I quickly turn my head in the middle of a point and once again my world went haywire. I immediately ran off the court and outside. I sat for a few moments until I realized this was unlike any of my other attacks. This one was much more severe. I practically crawled back into the rec center and asked (mumbled) the front desk guy where the restroom was. I drunk walked there as well. Once there I slid into a stall and held on for dear life. Over the course of the next two hours, I experienced things I wouldn’t wish upon my worst enemy or even the devil. I was throwing up every last cell in my body until I had nothing left. My head was in outer space and I cried for help for almost two hours until someone finally found me lying on the floor of the bathroom vomiting to the point of blood and dry heaves. I couldn’t see straight- everything was blurry and rotating from right to left, my hands and feet had gone completely numb, and I was still nauseous because as long as I was dizzy I would be nauseous. Once I was found an ambulance was called and I was taken to a hospital where I was given some typical medications to fight off dizziness. They didn’t do too much, but enough to at least knock a slight edge off the attack and allow me to fall asleep five hours after the attack had started.

Imagine being on a merry-go-round that is going 500 mph with your eyes closed and there is nothing you can do about it. Oh, and we are also going to make that merry-go-round rotate vertically with a side of throw up, as well. And your ear feels like it’s going to explode with so much pressure and an insanely annoying ringing noise. That still does not do it justice. Mind you that is just the ‘vertigo attack’ aspect of Meniere’s disease.

To speed this story up, I will say that after my trip to the hospital trip I came home, was officially diagnosed with “Meniere’s Disease” and from then until the end of winter break I had zero problems with MD. ZERO!? During Christmas break, I was put on a heavier diuretic and vitamins. I was also given specific pills to take for the onset of a vertigo attack and I followed a very strict low sodium diet. I assumed that because I had followed all of these things that I would continue to stay healthy second semester. Nope. The attacks begin to creep back again. I’m not sure why. I did not change anything, and certainly did not cheat on my low sodium diet because trust me I would rather not put myself through any more of these vertigo attacks. Gradually throughout the second semester, the attacks become more frequent and the duration begins to increase. I thought I had conquered them over winter break, but apparently not. They were coming back with a vengeance.

Once again near the end of the second semester, I was having many attacks, but I knew if I could just finish out my classes and get home I could get it all figured out over the summer. I was able to make it through my classes relatively smoothly and headed home early May. Once home things drastically became worse. I found myself in the hospital twice in less than four days because of severe vertigo attacks. I missed out on summer vacations with some of my best buds, spent countless hours in doctor’s offices, and weeks in despair.

I wasn’t so angry at the fact that I had Meniere’s. I was angry that I had to get it at eighteen years old. Why couldn’t it have happened in my forties or fifties when it happens in most people? And why does this disease have so much uncertainty? Just when you think you’ve got a handle on it, it punches you in the face.

Frustrating times and varying degrees of vertigo attacks and other aspects of the disease continued into July. I met with a neurologist at the end of June and he started me on TOPAMAX to see if that might help my symptoms. So, for a little over two weeks now I have been treating this horrible disease as a migraine associated vertigo. It definitely changed things, but I’m not sure it’s the answer in the long run. I seem to have attacks every two or three days now, which may be a little more frequent than before, but I’ll take it because the duration and intensity of the attacks are much less severe.

Most recently I visited a neurosensory doctor, yesterday, who is beginning to treat me on the ‘anti-viral’ side of things. I figured there would be no harm in trying it, that I can only reap benefits. So, I will begin to take valacyclovir along with a few other meds that I’m hoping can get my life back on track.

This disease has hurt me. It has completely altered my life in less than a year—physically and mentally. There are many things about my freshman experience that I didn’t enjoy and felt were taken away from me. It’s easy to think about all the hopelessness and tears shed over this sickness that has occurred between my family and me, but I must say good will come of this.

This syndrome has caused me to be a more sympathetic person—one that understands what people are going through. I appreciate the smaller things in life much more now. And even though I don’t really have a choice, I’m eating healthier! On my good days, I try to live life to its fullest potential. I also know that this disease won’t kill me and that I am truly blessed to be able to go the school of my dreams and have the supportive family and friends that I do.

I plan to continue to fight this disease for as long as I have to-- before doing any kind of invasive surgery, especially since I am only 19 years old. This disease has taught me a lot about myself, however. I now realize how strong of a person I truly am. If I can make it through my freshman year of college with this scary disease then I will be able to conquer many things in my life, most namely- Meniere’s disease.

Best wishes, Adam Rohrbough.

Texas A&M Class of 2019