Mdds - Suffering in a Hidden World
It’s taken me a long time to write about this nasty, rare condition and how it’s affected my life. I’ve kept my MdDS (Mal de Debarquement Syndrome or aka Disembarkment Syndrome aka Land Sickness) a secret from most people, primarily because they don’t know what it is, have no idea how to relate, what advice to give, and probably most frustrating is that from their eyes, I look completely normal. To top it off, I’m a doctor myself and shouldn’t I be able to figure out a way to stop it? For more information contact our team at Wolfe Functional Medicine.
In 2014, I had my fourth relapse. I had spent just two nights sleeping on a docked catamaran in the Keys. Those two nights took me an entire year to recover and have left me somewhat traumatized ever since. For those of us who have, or are suffering with this condition, I know you can relate. We are often dismissed by doctors, have been through multiple rounds of tests that either produce no findings or exacerbate our condition, have trouble getting through just normal daily activities (let alone work), and are left with no information or answers on how to “fix” it.
Making things even more complex is that even though most of us have been triggered by boats, that is not the case with everyone and even though most of us find relief while driving or riding in a car, that is also not the case with everyone. The symptoms vary from person to person along with every drug that is used to possibly “reset” the brain and bring us out of this continuous, torturous loop.
To help better understand, I’ve listed several sensations/symptoms that patients and myself have suffered. This is what life can be like when someone is living with MdDS.
- Continuous sense that you are still on a boat, rocking, swaying, bobbing, dizziness type feelings.
- Imagine someone grabbed your shoulders and slowly shook you back and forth and side to side, nonstop. Sitting still and lying down can make the sensation even worse.
- Imagine that your head is a balloon with a 6-foot string attached to your neck and its blowing in the wind, nonstop.
- Walls are moving toward you and away from you, the floor is coming up then down. This is what it can feel like when you are trying to walk.
- You know that feeling you get when you’re at the top of a roller coaster and you start to drop? Imagine that feeling, nonstop.
- Depth perception and spatial orientation are way off.
- Binocular vision is absent. Often vision can feel as if it is bouncing around or shimmering.
- Watching TV is agonizing, if even possible.
- Busy carpets are nauseating.
- Fluorescent lights, especially in large department stores or grocery stores can put you at a level 10 and make you want to run for your life.
- Flickering lights (even at a very low level not obvious to the normal eye) cause exacerbations in symptoms.
- Computer screens and blue lights increase the sensations of rocking.
- Feeling as if you live in a virtual reality world and only have tunnel vision.
- Unbearable fatigue due to brain over stimulation. Your feet and eyes are telling your brain you are on land and still, your brain thinks otherwise. It’s constantly trying to re-right itself, but it can’t.
- Tremors in hands.
- Nystagmus on occasion, not from MdDS but from your brain working to try to recover.
- Sensitivity to loud noises.
- Loss of memory- both short and long term.
- Neck pain and muscle tension.
- An inability to look at lines, even lines of a book.
- Small spaces, such as a shower, can easily ramp up your symptoms to the point that you are unable to function for the rest of the day.
MdDS in Boulder CO
This is reality to an MdDS patient. It has cost many people their jobs and their marriages. And just as easy as the condition started, it can spontaneously remiss (we all pray for that!) or it can slowly go away over time, or in worst cases, it doesn’t go away. We know that the more times that you’ve had the condition, the more time it takes to recover and the less likely you are to go into full remission.
Remission in general is not thought to be as likely once you pass the six month mark. This is still a fairly “new” condition and to my knowledge became more recognized as a diagnosis around 2006. Several doctors are still unaware of its existence and therefore are unable to diagnose it. The main diagnosing factor doesn’t come from neurological testing, vestibular testing or advanced imaging of the brain, but rather the fact that you’ve recently been on a boat (flight or train) and driving or riding in a car provides temporary remission.
In recent years, a new treatment was discovered at Mt. Sanai hospital and according to my interpretation of the study (link below), it involves resetting the VOR (vestibular ocular reflex). It doesn’t work for everyone but hey, it’s progress. As more and more people are being diagnosed, we’ve created a windstorm of pleas and cries for help and more research is underway. Doctors are starting to listen as several of us have begun to try to piece together this rare disorder.
Other than the study and the work done at Mt. Sanai, all doctors have been able to do is prescribe VOR exercises and medications such as Valium, Klonopin, Paxil, Gabapentin, and sometimes Prednisone at immediate onset, with the hopes that we can be somewhat functional while on them, and hopefully “reset” our brains when coming off of them. I compare this to a defibrillator for the heart. Much like defibbing the heart so that it comes back in normal rhythm, these medications depress the CNS in hopes that when we taper off the medication, our brain can unloop itself and the wires all connect properly once again.
MdDS is labeled as having no cure. According to stats, this condition rears its ugly self to mostly women between the ages of 30 -60. With that said, I believe there is some underlying hormonal imbalance, genetic predisposition, environmental and neurotoxin exposure, gastrointestinal dysbiosis and its effect on hormones and estrogens, autoimmune responses, histamine reactions, and possibly even the screen time we’ve all been subjected to.
In my practice, I’m also seeing a growing number of women in this age group with vestibular type migraines which can present in a similar fashion. Is MdDS just another type of migraine variant? I’m sure people have suffered from this condition for years prior to having an official diagnosis but it seems to me that the number of people being affected by MdDS is far more exponential now than it was 50 years ago.
What is it exactly that is tipping the scales?
I’m still working on figuring that out. I’ve found that through a very thorough and comprehensive history and examination, as well as hormone testing and inflammatory marker testing, Functional Medicine can help! I know because it helped me (my 5th relapse resulted in my fastest remission-Stay tuned for that blog post!) and it has helped many of my MdDS patients.
Different modalities work for different patients and so I use every avenue I can to help patients recover. This includes but is not limited to supplements, dietary modifications, proprioceptive input exercises, VOR exercises, CBD, upper cervical adjustments, acupressure, reflexology, blue light glasses and infrared therapy. Here in Boulder Colorado At Wolfe Functional Medicine, we also work with a local Neurologist who is well versed and experienced in treating MdDS patients.
If you are searching for answers, or a doctor who understands and has compassion for your condition, I’d be happy to help in any way that I can.
For more information on MdDS itself, please visit www.mddsfoundation.org
For the link to the original research study at Mt. Sanai, Readaption of the Vestibular-Ocular Reflex Relieves the Mal de Debarquement Syndrome, please visit:
10:00am - 2:00pm
2:00pm - 5:00pm
9:00am - 2:00pm
2:00pm - 5:00pm