Why I’ve Been Gone: Overcoming Mal de Debarquement Syndrome (MdDS)

Update: As of October 11, I am now 85% improved and still continuing treatment.

Hi guys,

I apologize for my very long delay in blog posts but I have been dealing with a health crisis for 5 1/2 months called Mal de Debarquement Syndrome (MdDS). It’s a benign neurological disorder where your brain struggles to readapt back to land after traveling – so for me it was after I took my cruise to Mexico. I am someone who has never had a long illness in my life and there is nothing life altering or threatening on either side of my family!

This has been a very eye opening process for me and you’re going to hear my highs and lows with it below. I also want to bring awareness to this rare disease and everything I have been doing to get rid of it!

What is MdDS?

MdDS commonly occurs after boat travel and it is rare with trains, planes, cars and elevators. Some people can also get it spontaneously. You have a constant motion of rocking, swaying and/or bobbing and you can assess how bad it is through the MdDS Foundation Symptom Severity Scale. I had no clue what this was until it happened to me! In the beginning, my levels were between a 2-3 and now they are between a 1-2 most days. I am blessed that I am able to function (e.g., work, walk, drive, etc.). MdDS is classified as a vertigo except the room isn’t spinning and you can feel disoriented. The biggest difference is you feel better in motion (e.g., driving, walking) and not when you are still!

MdDS, unfortunately, is not a one size fits all situation and different treatments help different people. The scary thing is there is no timeline on when it can go away (average is 1 – 6 months). It is treatable but there’s no cure. When I first heard “no cure,” I didn’t panic because like I said, it can be treated! Just like a common cold, you can catch one again but you just treat it and it goes away. With MdDS, most likely if you go back on the same type of moving vessel that caused it, you may get it again, so for me it would be a cruise ship – I WILL NEVER GO ON A BOAT EVER AGAIN! This has not been worth my physical, mental or emotional health and I have had my fair share of boats in my lifetime. Some people who have severe symptoms sometimes have to go on disability or need care. Luckily, that is not the situation with me and my heart goes out to those individuals who are suffering from it more than I have.

Me Before

Photo credit: MdDS Foundation

Me After

Photo credit: MdDS Foundation

When I got on the cruise ship on February 11, I adapted to the ship right away – no sea sickness for me! Even at the ports I was fine. When I got off the ship on February 18, I felt fine. I got an Uber home, took care of some household items when I got home, took a brief walk, got my nails done and went to bed. I remember feeling like I was rocking and swaying a bit that evening but I didn’t think much of it.

WTF is Going On?! I’m Back on Land!

After a few days I started to get concerned. My rocking/swaying had increased a bit and I even asked my lead at work at the time if this was normal. He said usually it takes a few days after returning from a cruise to get your land legs back. Later that week I got a bad head cold, got adjusted by the chiropractor and rested some more. The chiropractor did not help. I started to cry after a week had gone by and called my best friend Nicole to come over to calm me down. I felt like I couldn’t get off the boat! I had also done a ton of reading about MdDS and all the bull people go through, so I skipped that line and just diagnosed myself because there is no formal procedure to get one for this syndrome. All of my doctors immediately believed me! The biggest thing was the rocking/swaying sensation and that I felt better in motion versus being still!

I work from home for my full time job thank god but I still had freelance work I was keeping up, especially with pouring liquor at different events. There was also a sensation I got called the gravitational pull, almost like someone has a magnet and it trying to pull you forward from the bottom part of your body. Luckily, with all of the standing I was doing at the events, I got it to subside within a few weeks. I rarely feel it anymore.

My eyes also hurt a lot with the computer or iPhone in the beginning and now it’s hardly anything. I was fatigued all the time in the beginning and now I am not. I had headaches in the beginning and that’s gone now. They say MdDS is also linked to vestibular migraines but that’s not my situation as all. Also, the balance in my body isn’t altered, it’s just a sensation I feel in my brain and see out of my eyes – it’s nuts!

No Triggers

Photo credit: Stuff That Works

In the beginning, I heard about all these “triggers” that could affect MdDS: alcohol, stress, caffeine, barometric pressure, light, etc. I haven’t had a full drink since the cruise and I can tell you that I have been stressed, calm, had caffeine, decaf, the weather can be rainy, sunny – my symptoms are good or so-so in any situation. I don’t believe in “triggers” because it is all in your head.

One day in March I woke up from a deep sleep and I felt relaxed. As soon as I stood up, the swaying was very intense. So I felt calm, relaxed and I was swaying like crazy for no reason. Then we had intense atmospheric river rain storms in LA over the winter and there were times my symptoms were calm. I had a cup of coffee one day and my levels were a 0-1. This is when I knew I don’t have “triggers.” Even being in Florida with the weather being hot or rainy, my brain is fine.

ENTs, Vestibular Rehab, Neurologist, Acupuncture and Mount Sinai

Side note: I need to say that most doctors will not try and treat you until after a month because MdDS usually resolves itself within a month. After that it is considered “persistent.” Luckily, I didn’t doctor hop too much like I had read in other people’s stories and I was just trying everything I could.

By week 2 I was looking at different doctors to see. ENT #1 told me he “couldn’t help me” and gave me vestibular exercises to do at home. ENT #2 I saw at week 4 referred me to Vestibular Rehab (VRT). I also went to her because the first ENT didn’t do a good job at examining me. Luckily, my ears were fine. VRT did not help me much! By week 5 (my second week into VRT), I was feeling worse and I didn’t feel the exercises were helping me at all – the therapist even recommended I try medication!

I went to a neurologist in Pasadena at the end of week 5 and he believed me off the bat that I had MdDS. In April I tried Klonopin, an antidepressant that reduced the symptoms even more but it was just masking it. Next I tried the steroid Prednisone, which was an absolute nightmare because I had such a high sensitivity to it and the withdrawal horrible for me! Panic attacks, anxiety, no sleep – it was nuts! My neurologist felt confident between the 2 drugs I could go into remission. Because of the drugs, my symptoms slowed/calmed down and got me down to a 1-2 level but didn’t put me in remission. My neurologist also said that “MdDS is usually a one time thing” and did not believe I would be a “lingering case.”

In between all of this I tried acupuncture and it did subside my symptoms but only temporarily. I also contacted Sergei Yakushin at Mount Sinai Hospital in NYC because they have an optokinetic line circus tent that can get rid of MdDS. Sergei, however, informed me because my levels were low I would most likely go into remission sooner but also said he was here to help if I changed my mind.

“You Need to Come Home”

Meanwhile, my parents who live in Jacksonville, Florida were kept in the loop and were getting concerned. By the time I was on Prednisone, I called my parents crying that I needed help. I got a one-way flight on April 30 and expected to be out of Los Angeles for 1-2 months while I finished my recovery. By the time I got on the flight, I was 50% improved. The flight for the most part was okay and didn’t worsen my MdDS at all. I temporarily had very intense shaking underneath me and it felt like my neck wanted to pull me forward but those sensations subsided quickly! Basically, planes don’t stick to me.

It has been nice to be with my parents because my mood has boosted. I don’t cry as much as I did being alone in LA. I feel more confident even if I have my down moments. I also have been contributing around the house and staying active by working, going out with them and their friends or exercising. My dad is also a retired chiropractor and has been helping where he can, thanks dad!

Functional Neurologist

The week I was in Prednisone hell, I was looking at even more options like the GyroStim machine but read it could cost close to $5,000 for a on week intensive treatment in California – OUT OF POCKET! There was no way I could afford that and somehow I came across Functional Neurology – it was a fluke. Functional Neurology is a sub-division of chiropractic through the Carrick Institute with only a 40% passing rate in the U.S. – it’s a very rigorous program! They also have specific MdDS courses and know exactly what to do. I read they had a higher success rate with MdDS patients, so I thought I’d give it a shot – and it’s working! The exercises are also not typical VRT exercises and it focuses on neuroplasticity for different parts of the brain that are affected (neuroplasticity takes about 18 – 254 days to develop with 300 – 400 reps depending on the situation). As I type this, my midline is what is affecting my rocking (it just started getting lighter this past week, it started up a bit more about a few days before I left LA) and the swaying was on the left cerebellum. I also had a minor issue with my right vestibular system. Basically, I am retraining my vestibular-ocular reflex.

I am also getting some upper cervical work done. It helps with my overall body function and my neck because I do so many exercises moving my neck. It won’t take the symptoms away though!

I ended up with 2 different Functional Neurologists I found around Jacksonville. The first one helped me a bit but I also felt like a lab rat – he was also a bit more old school. The second one had much more experience with MdDS patients and even had the software to detect where my progress was. As I type this, I am 75% improved and expected to be 80% – 85% by my birthday in early July. I was told my case is “complex” but every MdDS patient is! I was also told am also going to 100% recover and no future relapses, thank god! This is due to developing neuroplasticity early! I am returning back to LA sometime in mid August to finish recovery there.

I asked if I could’ve resolved from it spontaneously and both doctors said no and told me that it was a good thing I started treatment early at 2 1/2 months post onset. They said that usually when people decide to get treated after 6 months it is possible to recover but it is also a bit more difficult no matter what level they are at. I was also encouraged to continue acupuncture so I have been doing that twice a week as well in Florida.

If I Have Low Levels, Why is This Taking So Long to Go Away?!

This is a question I have asked every single doctor I have seen – none of them can answer the question above – but tell me I am expected to 100% recover. To me, it logically doesn’t make sense why this is taking so long.

First I was told June/July by the first functional neurologist. Then I was told by my second functional neurologist that it usually takes someone with my levels/scores 3-6 months of treatment to fully recover BUT that because I was already at 75% that I was “on my way out soon.” Then I was told there’s no timeline and worst case scenario was NLT fall and the best case scenario sometime this summer. Then I was told 80-85% by my birthday – okay, that’s moving faster IMO. As of late July, I am now 80% improved.

My cousin told me it depends on how my body reacts. She’s right to an extent but I have low levels that should have been in the ground by now and my brain/inner ear/eyes have been responding fine. If I had a more severe case, I wouldn’t be saying anything and accept the fact that I could take longer. But in my eyes, when you have low levels, it shouldn’t take long to disappear.

Bloodwork and MRI

I also got bloodwork done because there is a claim that hormones can come into play with women who have MdDS. I rolled my eyes at that and guess what? My hormones were all normal and I’m 42-years-old! The only thing strange was my Vitamin B12 was low, so I got a shot of that to help my neurotransmitters and boost my mood. I do notice a slight difference but that is not going to take away my symptoms, functional neurology is.

I felt like an MRI was a waste of time because I had read that MdDS doesn’t show up on an MRI. When primary doctors or ENTs say “oh, we need to rule other things out” – that never applies to an MdDS patient. I haven’t met one who had an abnormal MRI. My parents pleaded with me to get one. Of course, I was fine.

Connecting with Others Experiencing MdDS on TikTok and Instagram

Through this journey I began updating my audience daily on my Instagram stories and making about one video a month on TikTok. Even though MdDS is different for every person, I think it is important to open up the conversation and connect with others! There all all these studies that say it affects more women in their 40s and I rolled my eyes at that too. I have talked to women of all ages!

One of them is Lorraine – we have created a tight bond and chat every day! Lorraine originally got triggered from a plane around the same time I came back from my cruise. When she took another flight, the plane actually reversed her rocking and swaying! At times she had her symptoms come back temporarily for maybe a day but she just did her VRT exercises and it went away. She rarely feels it anymore!

I Don’t Settle For 80%…90%…I Settle For 100%

Something else I wanted to bring up is the MdDS Facebook Group. I am not bashing this at all but it was not good for my mental health…keep in mind the subhead above on this section. When I was on the Facebook group for only ONE DAY, I had comments like, “Oh, low levels are nothing, I accepted it” or “Oh, I had the same levels as you and it took me 6 months” or “I would die to have your levels!”

What I don’t understand with some of these people is why they stopped trying or didn’t try sooner to get it to go in remission because IT IS POSSIBLE! I did realize that people who originally had high levels get down to low levels with treatment and that’s where they stay OR they waited too long to get help. This is why I was throwing everything I could at it in the beginning because I refused to be a lingering case (even though multiple doctors told me I wouldn’t be). I am just not one of those people who “accepts” things. I’m more of a I’m on a mission, I’m the CEO of my health and let’s throw everything I can at it.

I understand that everyone has a different personality but I am here to tell you do not give up on yourself! I know people usually “ride it out” but as I mentioned earlier, why wouldn’t you try everything you can to get it in remission sooner and/or not have a relapse?! Do your research and be your own advocate! Go in and tell the doctor from the start, “I have MdDS.” A good doctor will listen and believe you, so you don’t get side tracked with other testing!

June is MdDS Awareness Month!

MdDS can happen to anyone, even if it’s only for a couple of days. If you are going through MdDS and need someone to talk to, I am here for you! You can DM me on TikTok or Instagram.

A special thanks to my family and friends who have been there – thank you for your love and support and for putting up with me! I know I haven’t always been the most happiest of people at times but your encouragement and just you being there for me gets me through the day! 🙂

Photo credit: MdDS Foundation

Main photo credit: Lifecode GX