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.
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.
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.
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