This is a blog about my experiences with an illness called Mal de Débarquement syndrome, or MdDS balance disorder, or Disembarkment syndrome. This first post is a longer explanation about the disorder, my symptoms and how I got diagnosed.
MdDS is a neurological disorder that occurs after travel, usually sea travel or air travel. It is not clear how the mechanism works, but basically it means that a person suffering from MdDS is unable to regain their "land legs" after travel - meaning, their brain still thinks the surface they stand on is moving. This causes swaying, bobbing and rocking sensations while walking, standing, sitting and lying down. The severity of these symptoms varies from person to person, so some people feel just a slight swaying whereas others can't stand or walk at all without stumbling and falling.
I first experienced MdDS after a trip to New York City in May 2016. I had some weird swaying feelings even when in NYC, but I put it down to jet lag (the time difference between Finland and NYC is 7 hours and the flight takes about 8 hours). When I flew back home, a day or two later I noticed weird swaying sensations, and the surfaces I was walking or standing on seemed unstable. This caused balance problems and fatigue. I saw a doctor after the symptoms had been going on for about a week (most of which I'd spent in bed, unable to do much).
They did a bunch of tests on me, checked that it wasn't my shoulder and neck muscles tied in knots or some infection in my ears; they took blood samples. Everything they came up with, every examination and blood test they tossed at me came back normal. The only thing that my physiotherapist thought was weird was when she made me stand on one foot for a minute. I could do it (although it took a lot of concentration to stand still), but my ankle was constantly making this small movement back and forth at the joint - "it's like you're standing on a moving surface." (That's how I've been telling you I feel like, haven't I?)
In the end they concluded that I was just fine, muscle-wise and in other aspects. "Unexplained balance disorder."
After weeks of inconclusive poking and testing, there was no change. I was still feeling like I was walking on moving or unstable surfaces and every night my bed felt like a hammock that swayed back and forth all night long. But I also noticed something else:
The swaying sensation went away when I was riding a bus or sitting in a moving car.
This eventually led me to MdDS.
Well, actually I think it was my sister-in-law who first sent me a link to an article about a woman who stepped out of a cruise ship nine years back but still, nine years later, felt like she was on a moving ship. So I started researching the subject.
While lying in bed unable to do much physically, I had a lot of time to google things. I researched every possible balance-affecting disorder, and MdDS was the only thing that fit every last one of my symptoms - this weird neurological disorder that makes the sufferer feel like they're on the deck of a moving ship at all times, and is usually triggered by travel. Also, pretty much the only diagnostic criterion that sets MdDS apart from other balance-affecting disorders is the fact that the symptoms go away when the person with MdDS is in passive motion - meaning, sitting in a moving vehicle. And I had just that: when I was riding a bus or sitting in a moving car, I felt normal. Once the car stopped, the symptoms returned.
I was scheduled for a brain MRI to rule out other neurological disorders, such as MS (Multiple Sclerosis). The scan was to be in August, and my symptoms started to go away slowly in July. By mid-July I felt normal again, after a month and a half of swaying and bobbing. I went to the MRI anyway, just to be sure, and it came out normal just like the other tests they'd done on me.
Next, I saw a neurologist who said that my brain was all good, and that he didn't have any idea what could have caused my symptoms. (The bad thing when getting a diagnosis is that MdDS is relatively unknown even to most neurologists, so it's not even considered as an option.) I cautiously asked my neurologist how responsive he'd be if I told him of a theory I had. I said I'd read scientific research on the matter, so it wasn't some hocus-pocus WebMD diagnosis I was offering. He looked skeptical, but listened to me anyway when I talked about MdDS. I told him about the fact that my symptoms went away in a moving car, and how that had led me to suspect my symptoms were due to MdDS. The neurologist actually had to google MdDS because he hadn't even heard of it. After reading about MdDS, he was quiet for a moment, and then admitted that I was probably right... and that this disorder could actually explain the symptoms of a few other patients of his as well. (So I may have also helped other people with MdDS to get the right diagnosis, which is amazing.)
So I got diagnosed with MdDS, about a month after my swaying spell had ended. Why did I want the diagnosis anyway, even though I didn't have symptoms anymore?
Because MdDS is like a bad penny - it has a habit of making a comeback.
Last weekend, I went on a 24-hour cruise on a ship. I knew there was the risk that my MdDS symptoms would come back, but rather than never doing any travel ever again, I wanted to test if the symptoms actually would come back. For some people with MdDS it's a one-time thing and after the symptoms are alleviated they can go on with their life as normal.
Apparently I'm not one of those lucky people, because three hours after I stepped out of the cruise ship, the bobbing and swaying came back.
That was last Saturday, four days ago.
Four days, during which I have cried, cursed, cried some more, and tried to go on with my life as usual. (It's somewhat possible, though really, really exhausting.)
For me, the swaying and bobbing feeling is relatively low key, meaning on a scale from 1-10 I fall somewhere between 2 and 3 on most days, although the severity of my symptoms can vary throughout the day (usually it gets worse toward the evenings). In practice this means that when I walk, it feels as if I'm walking on a trampoline or some other unstable surface. When I sit down I feel like I'm swaying back and forth, side to side and even up and down, even though I'm perfectly still. When I lie in my bed, the bed feels like a hammock that someone is constantly rocking back and forth.
My symptoms are not bad (compared to some descriptions I've read online from people who have it way worse than me), but they do affect me in various ways:
- I have to concentrate on many things I used to take for granted. Like standing and walking. I'm constantly stumbling when I walk, and last June when I had my first bout of MdDs I managed to kick my ankles while walking so the insides of my ankles were a scratched and bloody mess. (I took to wearing high-tops pretty soon to stop this from happening.) I've knocked over numerous glasses and mugs when reaching to grab them. Note that I can walk straight and overall appear completely normal to the outside world, but this takes up a lot of energy due to the effort and concentrating I have to put into it.
- Because I have to constantly concentrate on things I'd normally do automatically, I am exhausted all the time. I can sleep for 8 hours and still have to take a 1.5-hour nap in the afternoon because I'm so tired. If I need to go somewhere even for an hour, I need to rest afterwards. Actually, I usually just fall asleep afterwards, whether I want it or not.
- My mind feels foggy all the time and it's harder to concentrate on things and remember things. Following for example powerpoint slides in class is tiring, because I feel like the text is moving when I read it so I need to focus a lot. Naturally this affects my ability to study, because concentrating on a demanding writing or reading task and sitting upright at the same time drains my energy pretty effectively. Thankfully I don't have long days at the uni right now, because I am done after just one 1.5-hour long class. I'd have to drop classes if I had more than one class on a given day, but so far I've been able to manage that one class a day which is all I have right now in my schedule. (Although I do need to rest after that one class.)
- I can't walk half a mile without feeling like I need to lie down afterwards. The easiest position for me to be in is lying down, because then I don't have to constantly concentrate on supporting my muscles to keep my body in balance in the midst of this constant swaying sensation. I can sit for quite a while but that makes me exhausted in the end as well. Standing still is the absolute worst, because it requires so much concentration and effort. I went to choir practice today, and I could just keep standing throughout one song at a time (like 3-5 minutes), then I had to sit down for a bit. I was shaking all over and my heart was racing like 200 bpm after standing still, so it's definitely not an effortless task in my current condition.
- The symptoms get worse when I get tired. Usually I'm relatively fine in the mornings, but throughout the day the swaying and rocking sensations grow more noticeable so then I have to concentrate extra hard to complete my daily tasks. And the effort it takes to concentrate then drains more of my energy, which makes me tired, which makes the symptoms worse. So it's a vicious circle.
In conclusion, Mal de Débarquement Syndrome is a debilitating disorder that affects all aspects of my life right now. My last MdDS spell lasted for a month and a half. The most awful thing is that I can't tell how long it'll last this time. The symptoms might go away in a week, or a month. They might last for a year. Or nine years, like they did for that one lady in the article I read. They might never go away. And even if they do, they can come back if I spend too much time in a car, or on a boat, or a train, or an airplane.
And there is no cure or effective treatment available.
So the thing I'm most bummed about is how effectively this shrinks my world. If any longer-lasting trip by any means of transportation can trigger my MdDS, I can't go very far. Or I can, sure, but at what cost? Even if my symptoms go away this time (pleasepleaseplease I hope they do), there's no telling if and when they'll come back, or the symptoms might come back more severe (apparently that's usually the case in recurring MdDS). Or, worst case scenario, the symptoms might come back for good.
Well, my symptoms might already be back for good this time, I can't tell before this goes away. I can only hope this spell of MdDS goes away, and then I'll have to do all in my power to prevent it from happening again. Even if it means never traveling anywhere that's further than a 3-hour car ride.
I just want to say that having this disorder sucks big time and I wish I was making this up. Sure, I am still able to study and do things, but everything costs extra these days when it comes to my energy resources. If I go to class, I probably won't be able to do much else. If I skip class I can do something else that's more fun for me, but then it's at the cost of my studies. I can go to choir practice, but then I don't have the energy to cook decent food, so then it's at the cost of a healthy meal. Life has turned into a game of choices, and I really don't want to play it for the rest of my life. Here's to hoping this swaying spell goes away soon.
Please go away soon.
So, this is what I am dealing with right now. If you are someone I know and interact with in real life and I seem tired or dazed or spaced out when we meet somewhere, this is the reason: I am standing on the deck of my personal, invisible ship that is in constant motion, and I'm just trying to stay balanced.
-Satu
More information about MdDS:
Cha, Y. (2009).Mal de Debarquement. Seminars in Neurology, 29 (5), 520-527.
Website for MdDS Balance Disorder Foundation
Website for MdDS UK
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