In March of 2013, my wife and I enjoyed a 7 day Caribbean cruise. I consider us veteran cruisers as we have taken eight or nine cruises in the past. I never experience motion sickness during a cruise, however I always experience the feeling of being still on the ship after disembarking for a few days, so I didn’t think anything was wrong this time. One week after our latest cruise I woke up one morning and just sat on the edge of our bed for a few minutes feeling like “something is wrong”. I even went to a mirror to see if my face was drooping. I thought perhaps I was having a stroke. My brain was in a “fog” and I couldn’t think clearly.
Two months pass before I finally see my GP. I NEVER go to the doctor. I had been experiencing various symptoms during this time that I had attributed to either a virus, low blood sugar or just getting older. My existing tinnitus was louder. My ears felt full. I was tripping more during my trail runs. I was veering in the halls at work when walking. I was having trouble putting thoughts to words. Extreme fatigue. I have run several 100k events, yet I never felt more fatigued than simply coming home from work, where I sit in front of a computer all day. Yard work around the house now took multiple days instead of a few hours.
My GP orders an MRI. MRI comes back negative. Orders complete blood work and a physical. Everything ok there. Sends me to an ENT. The ENT runs all kinds of tests I never heard of. Hearing and balance tests appear normal. Sends me to a neurologist. He performs basic exam and reviews MRI. Again, everything is fine. ENT puts me on diuretic and clonazepam and says I have Meniere’s disease (although I do not exhibit the classic symptoms). At this point I am very frustrated. Between age 40 and 50 I was proud to say I visited my doctor once or twice. I have completed over thirty ultramarathons in the past four years. Now I am on three meds; supposed to be on a low-sodium diet; no cure in sight; I feel like an old man.
I schedule an appointment with another ENT at a teaching hospital (in another city) for a second opinion. More hearing tests were performed and after reviewing the results he says I do NOT have Meniere’s. Mentions disembarkment syndrome in passing. Also said it could have been a virus. Thinks I will be fine in a few more months and tells me to get off the Klonopin, but I could continue taking the diuretic.
What a relief. I did not want a lifelong disease like Meniere’s. He lists “Mal de Debarquement” as primary diagnosis and “viral labyrinthitis” as secondary. I didn’t even look at the documents they gave me as we left because I was so happy to not have Meniere’s disease. Later, I did recall talking about “viral lab” with the doctor and I begin searching the internet for anything I could find about this condition (NOT MdDS). Talk about a “brain fog”.
I join a forum at a website for “dizzy people” and I list my symptoms, hoping someone can help me. A forum moderator stated I have the classic signs of MdDS and points me to www.mddsfoundation.org.
After reading the brochure on this website I am convinced I have MdDS. I print the brochure and review it with my wife that night. Something finally clicks in my 40 watt brain (I used to be 100 watts). I look at my medical chart from my last consultation. There it is! MdDS (primary) diagnosis. DUH.
So, where am I five months after our cruise?
I still have the ear fullness; the mental confusion (especially in a crowded mall); the disequilibrium; the FATIGUE. The fatigue is probably the most life altering symptom. I can get used to the disequilibrium. I run more carefully on the trails to avoid tripping. I know I am going to “wander” when I walk. However, the fatigue takes over my life some days. There are days when I have to go to my car to take a nap at work during lunch. Some days I come home and I have to nap for a few hours. Even with naps there are nights when I require 10 hours sleep. I have good days (where I think I’m finally getting better), followed by bad days (where I’m back to square one). I find reading about other people experiencing similar symptoms is somewhat comforting. Friends and family just don’t understand how I feel. Everything appears normal, but that’s NOT how I feel inside.
I hope for the best and try to live a normal life (as much as possible). I am determined to stay positive and count my blessings for all the things I can still do. Life’s good.