The Voyage Continues
After about 3 weeks thinking I was headed for land (metaphorically), a snowstorm came (literally). I started getting a migraine more intense than the usual head pressure, with a sharp pain on the right side of my head. The migraine lasted for days. With each day, more and more symptoms reemerged – seeing things rocking or moving, feeling rough waves and a mix of motions, dizziness, gravitational pull when walking, short bursts of tinnitus. I was back at sea every minute of every day.
New symptoms also emerged in the weeks that followed – bursts of dizziness, new patterns of rocking, swirls, and spins. Moving my head or body certain ways creates surprising, disorienting movement perceptions. Just turning onto my side in bed can create a whole rush of rough waves. I keep feeling the floor or bed dropping out from under me – like a plane suddenly descending or an elevator adjusting before coming to a stop.
After a few weeks I got used to the new sensations, and they have become manageable enough for me to objectively write this post. However, I won’t sugar-coat it, these past few weeks have been devastating. To go from thinking I’d reached land to being back on the boat constantly, at a very significant point in the recovery process, has been a hard pill to swallow. I am still stuck on this wild boat ride, out to sea, with no land in sight.
Something that is important to realize is that there is no cure for Mal de Debarquement Syndrome. Once you have MdDS, if your symptoms stop you are considered “in remission.” This means that you can’t ever be 100% certain that your symptoms won’t return. MdDS can start again at anytime. People can be re-triggered by a car ride, airplane, fatigue, running on a treadmill, an elevator ride, looking at moving water, or even spontaneously.
The 6 Month Milestone
For people with MdDS, the best chance of reaching remission is within the first six months. After 6 months, the chances of spontaneous recovery from MdDS are reduced, making it a significant (and depressing) milestone.
“For now, what we know is that if MdDS symptoms do not resolve within several months, the chances of remission get pretty slim.” – Yoon-He Cha, MD
I know that every person is different. Many people do reach remission after 6 months or even a few years. There is always hope, even if the odds aren’t great.
If you don’t have MdDS, it is extremely hard to fathom the feeling of constant motion. When this first started, I couldn’t have imagined myself 6 months later still feeling this way. I desperately long for true stillness. I want to not be moving and not feel moving. I want to be able to close my eyes and feel the actual, real ground, under my body. I want to rest.
“They remain symptomatic when they are still, such as standing or even lying down. In other words, they are never quite able to rest.” -Yoon He Cha, MD, describing patients with MdDS.
I know this is sad to read. I’m not looking for sympathy. Please, don’t throw me a pity party! When I started this, I was hoping I could reach remission within 6 months and post all about it. This isn’t the ending I wanted, but I have to be real and share the ebbs and flows. I set out to write my real, actual experience with Mal de Debarquement Syndrome, and this is it.
A Better Sailor
As hard as this experience has been, it has made me realize that I am very lucky to have the capabilities that I have. I’m grateful that I’m able to do most of the things I did before. Yes, I am still on a boat, but many aspects of my MdDS have improved in these past 6 months. Here is a list (and it is pretty long!):
- Fatigue: I can function on a normal amount of sleep, compared with sleeping up to 16 hours a day in the beginning.
- Headaches: I still get headaches, but usually I can push through and continue doing normal activities.
- Brain Fog: Most of the time, I feel pretty clear-headed.
- Sleep: I’m able to sleep through the night with my weighted blanket. I’ve only had one night that the motion sensations woke me up (and were rough enough to keep me up) since I got the blanket.
- Feeling Motion: I always feel in motion, but most of the time I’m able to handle it. I’m not sure if the waves feel calmer or if I’ve just adapted to them.
- Visual Motion: I still see my rocking, swaying, etc, but most days it doesn’t interfere with normal activities. For example, I remember struggling to read my first week back from my trip because the words would rock back and forth in a u shape. Now, my vision is consistently stable enough to read and do most normal activities.
- Maintaining Focus: At first, I would get really distracted by the motion sensations. Over time, I have gotten better at ignoring them when I need to.
- Lights: I am able to better tolerate short exposures to blinking lights or bright lights. I also have a variety of glasses and accommodations that have helped me deal with lights (see my post, Staying Afloat, for more info).
- Technology Use: I wouldn’t say I can be totally care-free with screen time, but I can tolerate a “normal” amount of tech time. For example, I used to get sick watching certain shows or movies because of the motion or camera angles. Now, I can pretty much watch anything with minimal problems. I can scroll without issues most of the time!
- Fear: At first, I was scared to do normal things like driving, going to stores, or crossing streets. Now, even if I feel anxious in those situations, I am able to stay calm and remind myself that my sensations aren’t reality. For some reason, it helps me to think about how no one else can see or feel what I’m seeing or feeling.
- Resilience: I’ll be honest, most days I still feel pretty crappy compared to my “old self,” but I am amazed that I have been able to push through it every single day for six whole months! Just doing normal things with MdDS is a huge accomplishment.
I know that I’ll become a more skilled sailor over time. I feel very strongly that this experience is changing me for the better in the long run. It is my goal that I will look back on this time in my life and feel like there was a purpose to all of this for me. My new motto: Good things are coming.
I would love to hear from my MdDS crew if anything in this post has resonated with you or if you have any advice for me going forward on this voyage. Definitely share if you have reached “acceptance island” and how you got there!
To read Dr. Cha’s full article describing MdDS (quoted above), click here.