My experience with Mal de débarquement syndrome (MdDS)
Since May, I’ve been struggling with Mal de débarquement syndrome (MdDS). It’s a brain condition where it feels like you’re constantly moving even when you’re not, usually brought on by extended boat or plane travel. For most people it lasts a few days, for a rare few, it’s years. Mine lasted about five months.
Clay and I took a European river cruise in early May, but it was the long flight home that triggered mine. After a couple weeks of symptoms (more on that later), I visited an ENT who diagnosed me. Once I started reading about it, I realized I had this ten years ago after a long flight home from Brazil. At the time I thought it was vertigo and never received a proper diagnosis. It lasted about a month and resolved when I went under anesthesia for a colonoscopy of all things.
I wasn’t so lucky this time around, unfortunately. MdDS is difficult to diagnose and even harder to treat. There’s no reliable treatment for it and, although research is being done, there’s a serious lack of scientifically tested data. This led me down a path of reading Reddit thread after Reddit thread in hopes someone else’s anecdotal fix could help me. I read every blog and paper I could find, though many of those offered anecdotal stories as well. It seems like my experience isn’t unique and people who suffer with this condition are desperate for information and effective treatment.
What MdDS feels like
The easiest way to describe it is feeling like you’re on a boat all the time. Rocking, swaying, dizziness. In my experience, it’s very different from “sea legs” but it might be like that for others.
Maybe being on an ocean buoy is a better analogy and the waves are rough. The intensity of the waves fluctuates, almost like several people are surrounding you and pulling the buoy with ropes in hopes of knocking you off. And in reality you’re just sitting still.
Your head hurts with the dizziness of it. And although I’ve definitely felt worse acute pain, the persistence made this especially difficult.
Then there’s the gravitational pulling. You know when you ride a rollercoaster or carnival ride and you can feel the gravitational force pulling you against the side of the car? That’s what it feels like in your head. Almost like you’re Harry Potter and a Dementor is trying to pull you out of your body through your skull. It’s horrible and unrelenting.
It took a lot of effort to hold my head upright for more than 30 minutes. I started working from my living room recliner where I could prop my head against a pillow and alternate periods of sitting up and lying flat. I was exhausted all the time. Going to a movie or putting groceries away would knock me out for hours. Socializing was especially taxing.
I had persistent brain fog and could barely complete basic tasks. Most of the time I could only focus on the pain. I hoped at some point I would feel so used to it that I could forget about it, but I never got there.
I’m really grateful that Clay was able to pick up a lot of slack at home and with the dogs. And I’m grateful for a job and team that was so caring and understanding through this. I read that many people have to stop working while they deal with this and I’m so glad I didn’t have to quit my job. 🙏
Oh also, and I didn’t realize it until later, but I stopped dreaming during this period (or at least remembering them). All my life I’ve been a really vivid dreamer and it just shut that part of my brain down somehow.
“Treatment” I tried
There’s a lot of anecdotal “this worked for me” stories, so I tried a lot of things. These can be broken up into three categories:
- Helped alleviate symptoms temporarily
- Did not help alleviate symptoms
- Helped alleviate symptoms longterm
1. Things that helped alleviate symptoms temporarily
One thing that helps in diagnosing MdDS is that your symptoms actually go away temporarily when experiencing passive motion. I found immense relief from my symptoms when I was driving in the car. It was the only time I felt somewhat normal again. Sitting at a long traffic light would be torture until I could start moving again. Just going for a drive was a life saver.
We have a hammock chair swing in our backyard and that was my other place of reprieve. Swinging in the chair gave me immediate relief. It felt like someone removed a 40 pound metal helmet from my head I’d been wearing around and I could finally relax and breathe.
Unfortunately, driving and swinging would often make my symptoms worse afterwards, which is a very cruel thing.
We bought an IKEA rocking chair that helped also—though not as well as the hammock swing. Also I should mention that regularly lying down was also a necessity. It didn’t alleviate symptoms, but it allowed me to relax my muscles and helped with the exhaustion.
Anti-nausea acupressure wristbands also provided some relief, but inconsistently. When they did work they took the pain from an 8 to a 5. Which is not nothing!
2. Things that did not work
- Vestibular physical therapy - The only thing the ENT suggested for me. Sometimes this did nothing and sometimes it would knock me out for a full day. After several weeks, I did not see any improvement. Maybe it would have eventually helped, but the stuff I was reading said it didn’t reliably work for most patients and it was a 30 minute drive and $15 each time, so I gave up.
- Antihistamines (I tried Claritin, Allegra, Zyrtec, and Flonase)
- Decongestants (Sudafed)
- Anti-nausea medication (Bonine, Dramamine)
- THC and CBD gummies - I took a pretty low dose and it didn’t help with symptoms but it did help me sleep.
- Optokinetic head roll exercises - The at-home YouTube version.
- Deep tissue neck and shoulder massage - This was nice for the normal reasons though.
- Walking outside - Being outside did feel better than being inside generally though (it was especially bad when I was in a small room).
- Playing basketball - Something about your hands and feet feeling the ground through the ball. Didn’t help though!
- General anesthesia - Because going under anesthesia worked the last time, I decided to try again (I needed to have surgery to remove a cyst from my elbow). Woke up still dizzy which was a disappointment.
A few things I didn’t try but thought about:
- Benzodiazepines - This is the most common solution I saw from people who were able to resolve their MdDS through medication.
- Acupuncture
- Float in a swimming pool
- Go on a rollercoaster
- Take another long flight
- Go to Mount Sinai in New York for experimental treatment - I reached out but never heard back. Not sure if I actually would have made the trip.
3. What ultimately worked for me
Besides benzos, getting on an SSRI (antidepressant) was one of the most common medications people with MdDS said helped them. Back in January I had purposely gotten off of Paxil (Paroxetine), but I figured I’d get back on it and see if it helped here. Luckily I had a few months of meds still around I didn’t need to explain all this to my therapist (probably not a recommended path, but you do what you gotta do). It took me a while to try this because I really didn’t want to be on a longterm medication again.
But God damn, I wish I’d tried it sooner. In just three weeks I was feeling about 75% back to normal. And two weeks after that, I was back to 100%. No symptoms at all. Hallelujah! No idea what about the SSRI fixed my brain, but I’m not going to question it at this point in time.
I’ve never been more grateful for stillness. I’ve been able to focus again and work on projects. The brain fog is entirely gone and I’ve started dreaming again. What a gift I will not take for granted.
I am scared getting off the medication will make my symptoms return, but I will cross that bridge later. For now, I am really enjoying feeling healthy and getting back into the things I’d put off for five months.
The body is a mystery and healthcare is hard
I must say that even though I was able to get a diagnosis this time around, I don’t expect most people have that experience. This one in particular is tricky and feels easy to brush off. Despite being in immense pain, I always looked pretty stable from the outside.
After the ENT, I tried to get in with a neurologist in Phoenix who wrote a paper about MdDS, but was unable to because of various criteria. It also took over a month before I could get in with the vestibular physical therapist, who hadn’t even heard of the condition.
So I get why doctors can get annoyed with “I read this on the internet” kind of stuff from patients, but sometimes that’s all we have.