Six Months at Sea

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.

(If you are new to the blog and want to read about my symptoms over time, this is the third post.  Read Just off the boatLandlubber, and Land, Ho? for my previous descriptions.)

Mission: Remission

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.

 

Missing Stillness

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.

 

7 thoughts on “Six Months at Sea

  1. My heart reaches out to you. I’m 2 years into this episode and I remember when I hit 6 month mark. I can’t lie, it was a scary time (for all the reasons you have mentioned). I’d previously had 5 episodes ranging from 10 days to 3 months. These days, I am happy and well. Yes, I have bad days (hormonal inbalances, stress, colds etc) but 90% of my days are 0-1 on the symptom scale.

    Over time, with acceptance, self care, diet, lifestyle choices, and maybe it’s just the nature of the beast- it does get easier.

    The hardest hurdle I had to leap was accepting that I have an illness and that I may have this for a very long time. One day the researchers will figure out a cause. You are doing a great job raising awareness, keep it up x

    Liked by 1 person

    1. Thank you so much, Kara, for your kind words and sharing your story! I am so inspired by you – 2 years, 5 episodes -you gotta be a strong sailor! Yes, I think just writing this has helped me to make a little shift towards that frame of mind of lifestyle changes and acceptance, but I know I have a ways to go. And a few more things to try. Hopefully more research in the future will help us find solid ground sooner! Wishing you wellness! Thanks again!

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  2. Feedback and support are two incredible features blogging returns to its writers. Though you didn’t meet your 6-month recovery, you have found community and have educated others. Maybe not your ideal 6-month outcome, but an important outcome nonetheless. I’ll keep sending you good wishes, sweet Sandy, and hope that there’s a little plus/minus on that 6-month deal! xoxo

    Liked by 1 person

    1. Wendy, as usual, you are so right! I’ve already learned so much through this process and honestly received so much helpful feedback and support, which I am really grateful for! I appreciate the good vibes. Best wishes to you and your family, too! ❤️

      Liked by 1 person

  3. Every time I read one of your posts I sit there nodding to myself. I can’t totally relate to all you say.
    This is my third year – a momentous occasion of its own! In the early days I didn’t know what was wrong with me, neither did every doctor I saw. My symptoms didn’t make sense to professionals and 3 neurologists later I have at least found my diagnosis after assuming I had vestibular neuritis (thanks to neuro no.1).
    Today I’m accepting it for what it is. I can’t and won’t let it get on top of me. Positivity is key – I remind myself when I have bad days what it feels like to have a good day.

    Liked by 1 person

    1. Hi Jane! Thanks for understanding. You are so inspiring! 3 years and all that you have been through without having a diagnosis for so long – you are one brave lady! I totally agree- when I’m going through a spike I try to remember how I feel on the good days and think about how I’ll get back there soon enough. It does help!

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