October 2018 was such a great month. I went to Disney World for their Halloween event. I went to a costume party with my friends. My mental health was thriving, and I was genuinely feeling good. I thought I might even be ready to go back to work. A few months earlier, I’d quit my job due to declining mental health that sent me to the emergency room for suicidal thoughts. But a few short weeks later, a series of events would change my entire life.
I developed an infection; nothing serious but I needed to take antibiotics for it. While taking the antibiotics, my anxiety reached new levels I never thought possible. I started to think I was having a bad reaction or that they were interacting with my depression meds. I took a trip to the emergency room for a bad panic attack where I was told to come off my meds and that I didn’t need to taper off. I withdrew off of them hard. My anxiety was awful, I wasn’t sleeping at night, and I was experiencing strange physical sensations. One night, in the middle of my withdrawal and shortly after I was done with the antibiotics, I started feeling very detached from reality.
I felt like I was floating, and then the waves came.
At first, they didn’t bother me. I googled something called floating anxiety and figured it was just my anxiety from withdrawing. It went away a few days later, and I didn’t think anything of it. Then on Christmas Eve, the waves came back. I felt awful. I couldn’t think straight and was terrified something bad was going to happen. On Christmas Day, another major panic attack had me back in the emergency room. They diagnosed me with labyrinthitis and said I was experiencing vertigo. Except the world around me wasn’t spinning.
I kept telling them, “I feel like I’m on a boat.”
They thought I was dizzy and prescribed me meclizine, which did nothing for me. After a trip to an ENT, I was told I had fluid in my right ear and that I was experiencing seasonal allergies which I’ve never experienced before. Steroids cleared up my ear but I still felt like I was on a boat.
Then came a series of doctor visits, ENT visits, VNG testing, MRI scans. No one could figure out what was wrong with me. My ENT suspected BBPV but the maneuvers didn’t work on me. My doctor was convinced it was just anxiety and just kept prescribing different antidepressants. I reacted poorly to every med he put me on, and I still felt like I was on a raft on the seas in the middle of a storm.
Frustrated that no one was taking me seriously, I finally decided I’d had enough and started researching my symptoms. I found Mal de Débarquement Syndrome and was convinced that that’s what I had regardless of the fact that I didn’t have a motion trigger. I was connected to a specialist through the MdDS Foundation’s website and I got a cancellation appointment that same week with Dr. Christopher Danner of the Tampa Hearing and Balance Center. He was very attentive and responsive; after listening to my story, he diagnosed me with MdDS and Vestibular Migraines.
It felt great to finally have a diagnosis but when I got home that day, I sat in my room and cried.
At 21, I imagined such a different life for myself. To be diagnosed with something that there is no cure for was devastating. To hear people’s stories of living with this for years with no remission was heartbreaking.
The worst part of MdDS, to me, is feeling like you’re alone in it. I don’t have a mother or father to lean on, and I’ve often had trouble figuring out my own independence as an adult. Without the help of my incredible friends who have been my shoulder to cry on and the help from my Uncle and Aunt, I wouldn’t have been able to make it to any of my appointments that led to me getting a diagnosis. My Uncle especially has put up with a lot from me in the last few years and especially this last year. I don’t say it enough, but I’m so thankful for the support he’s given me and the rest of my family as well.
Family support is so important, and I feel that I treated them poorly at times because I was frustrated at their lack of understanding. But I believe they do care and wanted answers as much as I did, and I realize that now. I also want to thank my Nana, who let me cry on the phone to her at absurd hours of the night and who listened to me and allowed me to feel heard and loved and most importantly—understood.
Lastly, I want to mention my sisters who both listened to me and made me feel less alone. My eldest sister encouraged me to share my story, because she believed it would not only help me but had the potential to help others as well. My other sister has listened to every single one of the emotional breakdowns I’ve had since being diagnosed without judgement. Their support means the world to me.
All of this is to say, if your loved one is telling you that they’re hurting, take them seriously and listen to them.
Before my diagnosis, I didn’t know how to properly communicate with my family about it, and I felt very alone. I often felt like I wasn’t being heard. All I wanted was for my family to listen to me, for someone to take me seriously. And when they did, it meant the entire world for me. I’m fortunate that now with a diagnosis, they’ve taken the time to listen and hear me out and are a lot more empathetic to what I’m dealing with.
On the day I was diagnosed, I felt absolutely defeated. Despite the fact that Dr. Danner had signed me up for vestibular rehab therapy and gave me meds to try and a routine to follow, I just couldn’t help but feel completely hopeless. It wasn’t until recently that I finally decided I’m going to stop feeling sorry for myself. I realized that I cannot let this beat me.
Every last person suffering from MdDS deserves a beautiful and fulfilling life. We deserve access to affordable treatment and we deserve hope.
I’ve looked at all my options and am considering Mt. Sinai as an option if the VRT doesn’t work for me. I’m lucky to have the support of my family and friends to help get me there, and I hope that moving forward, this treatment with such a high success rate* can be made more accessible to the ones who desperately need it.
I don’t know what caused my MdDS. I can only speculate that it was the perfect storm. I say it every time someone asks me how I think this happened. But I try not to speculate anymore because thinking that medicine I was supposed to take and my own emotional health played a role in me developing this disorder that I’ll be stuck with for life is too much for me to wrap my brain around.
A chronic illness like MdDS can really make you afraid of your mind and body, and I was in a very negative mindset for a long time. I asked the universe, “Why me?” a lot and cried nearly every day. Now I can say I’m finally ready to be strong. If you’re struggling with MdDS, you can be strong too! You’re not alone and there’s a whole community of people out there who understand you! I’m so grateful to have found that community. They make the bad days not so bad and I’ve learned so much more than I would’ve ever learned on my own. I’m ready take the next step in my journey, and I’m going to walk into it hopeful. I’ve decided that whether or not it works for me, I’m going to go back to work and school. It’s going to be challenging but I deserve to have a wonderful life, and if you’re living with MdDS, you do, too!
21 at onset
*No advice. No endorsement. In the research article, “Treatment of the Mal de Debarquement Syndrome: A 1-Year Follow-up,” the authors provide a definition of “significant improvement.” Links to all research articles on MdDS available are available in the Biomedical Literature page of this website.
My husband just sent me an article from The Washington Post titled: Perspective: For some unlucky travelers,’disembarkation sickness’ strikes after the cruise is over.
So my condition has a title – MdDS.
And the severity of what some sufferers live with makes me feel very lucky. My most severe experience came in 2010 as we readied to disembark from a 2 week cruise from LA to the Hawaiian Islands back to LA. By the time we made it to LAX, my husband had to hold my hand or I went careening from one wall to the opposite wall.
My brain kept telling me I needed to adjust to being on a ship. Once home, I immediately went to my GP who prescribed Meclizine which didn’t really help. I didn’t drive for the next month, not because I was told not to, but because I knew I wasn’t safe. I was 61, otherwise in good physical, mental, and emotional health, yet out of control.
I managed to improve, I guess, through rest and relaxation as I was retired and have a supportive patient husband. I had a number of brief “room spinning” events over the next year the worst always triggered when laying absolutely flat on my back on a table like a massage person uses. I wouldn’t feel safe to drive and had to sit and wait until I felt stable enough. Once I had my husband pick me up.
I took a one week inner passage Alaskan cruise 4 years later using a patch behind the ear, Transderm-Scop, and started taking an over the counter supplement called Lipoflavonoid which the ENT doc told me some of his patients had recommended to him – just passing the information along to me. I was willing to try anything. I am always fine on the ship – never been seasick – and my reverse motion sickness was brief after the cruise. I am helped by the Lipoflavonoid – I’ve never believed much in vitamins and supplements – and if it’s just a placebo effect, I don’t care! I can lay down flat without the room spinning and getting nauseous when sitting up afterwards.
My sincere sympathy to all of you whose lives have been permanently altered by this debilitating disorder. I am glad you have a forum to share your stories, therapies, doctors, etc.. I am very grateful to have a better understanding of my very mild version of this condition as NO ONE I’ve ever told my story to has shared this experience.
It’s wonderful that you have a supportive husband. Your symptoms are somewhat atypical; rotational spinning is not usually reported with MdDS, and most (not all) sufferers find temporary relief of symptoms while driving. But we certainly understand your hesitance to drive. You are not alone in that respect; the symptoms of MdDS can be quite debilitating.
Did you find any treatments to help you? Supplements? Meds? Or what therapy techniques
Ruthanne, your story is EXACTLY my own. It was 2008 and I was 20.I was a student at Cal State Fullerton and had just had a surgery that required Prednisone ( a steroid standard for post surgical inflammation ). I began taking it and within a few days was feeling detached from the world, just a light disorientation. I too, thought nothing of it. It was also finals week and I had been sleep deprived, so I attributed my symptoms to lack of sleep. It went away briefly. A few weeks later, the same detached and disoriented feeling hit me out of the blue. This time, however, it remained. I kept taking measures to ensure I got good sleep, ate well, and took care of myself- to no avail. Over the next few weeks the symptoms got worse and I began feeling off balance, lost my ability to focus, and only felt relief in a vehicle while moving. I can empathize and relate to each and very emotion you have been through on the spectrum. I went to GP’s, ENT’s, Neurologists, and went through Vestibular rehab. therapy. I remember laying on my back on my living room floor contemplating life and death, and I remember being at a stalemate. That scared me! Im not a depressed person. The positive things that helped me- learning anything and everything that reduced my stress in the moment- I would even stop and try to do Chemistry equations if it meant getting my mind of my syndrome. I also began jogging 3 miles every few days and escalated to a few miles every day. It brought up my symptoms, initially, BUT guess what, they dissipated over time. I also found that out of all the medications I had picked- I found EXTREME relief in Klonopin. I would take it ONLY if I was having an extremely bad day and it brought down the sensations immensely. Today I am 31 years old and have been ( I like to think ) in remission for almost 11 years, although my balance has never returned completely to normal ( it may never ), the rocking, bobbing, swaying is gone. Positivity and hope is what every human needs. Please stay HOPEFUL. Your young, the likelihood that this “bout” is permanent is unlikely- most go MDDS cases get far better within a year to a year and a half. There are meds to help on hard days, and there are ways to retrain your brain. The body is a resilient piece of equipment. I’m sending my prayers and positive vibes your way. Love you my MDDS sister. =] Your not alone. We can all rock and roll together- in fact I’ll throw us a party! <3 Use this time to be of service to others and build yourself up in that way. It gets us out of our own head. =) <3 <3 Your life DOES NOT, end here. NOT AT ALL.
Did the Klonopin help you? I’m going through the same thing
Keep on writing. Keep on sharing. I am in my second year of MdDS following a week long cruise, sometimes its a bit better but recently a bit worse. I blame it on the vibration of the lawn mower for now. Keep strong and keep hope alive and YOU ARE NOT ALONE.
Sending positive vibes to you! Thank you for your message!
Ruthanne, I am so sorry that you are having to deal with MdDS at such a young age. I’m glad you finally got an accurate diagnosis. You have developed a good attitude deciding you are not going to let this syndrome control your life. You will adapt to its many faces, persevere and move on with your life. It will make you stronger and more compassionate toward others with infirmities. Don’t be discouraged when you go through down times. When you are able, dust yourself off and remember your resolution to continue on and have a good life. Turn to this group often and maintain contact with those here who reach out to encourage you. My faith helps me enormously. I am on the other side of the age spectrum: 70 when I got it after my first (and last) cruise. That was 3 years ago.
Thank you for your wonderful message! I’ve had good days and bad days but I am determined to continue my life and to live it fully! Sending well wishes to you!
Comments are closed.