A Journey to MdDS Land

When you have Mal de Debarquement Syndrome (MdDS), it’s hard to explain to others how you feel. As a rare neurological condition, it’s not something that most people have experienced in their lifetime (and thankfully never will). The sensations are different and even a little bizarre. Most of us with MdDS describe the main symptom as feeling as if we are on a boat. If you think that sounds relaxing, it isn’t. Most of the time, the “boat” is not a calm cruise ship with some gentle rocking you only notice slightly when you are sitting still or lying in bed. MdDS often feels like being on a small lifeboat adrift at sea, with varying degrees of waves rocking and tossing you across the open ocean. For me, the symptoms are there all day, every day, except when I’m driving in a car, riding my bike or swimming.

To help those who care about someone who has MdDS, I’ve written a story to try to explain what we feel and give you a glimpse into our somewhat strange world. In this story, I’m taking my friend Amy on an imaginary journey that’s very real to those of us who live with MdDS every day. We’ll be visiting a big carnival circus tent and you’ll experience several different rides and attractions – no clowns, I promise.

LONG POST WARNING: If you have MdDS and are bothered by scrolling, we recommend printing to read offline. To print “A Journey to MdDS Land” press Command+P on a Mac or Control+P on a PC.

We’re here. Welcome to MdDS Land,” I say to my friend Amy, waving my hand in front of the giant circus tent towering in front of us. “Cool, Sheryl, this looks like fun,” she says, reaching for the large flap of fabric that covers the entry. I step in front of her so I can warn her about the lighting before we go inside. Handing her a pair of blue light blocking glasses, “First you’ll want to put these on,” I say. “The florescent lights are going to feel different to you.”

“I’m never bothered by bright lights,” she says, dismissing my offer for the glasses. “Okay,” I say, pulling back the tent flap opening. Amy steps inside and is immediately assaulted by glaringly bright lights and loud carnival game sounds.

“Ugh,” she shouts, shielding her eyes. “The lights feel like the ones they use at the dentist, only there are hundreds of them.”

“That’s what regular fluorescent lights can feel like to us,” I say, handing her the glasses that she rejected earlier. Amy quickly puts them on, and I lead her to a large swimming pool set up in the middle of the tent.

There’s a single-person life boat raft gently drifting in the water and I pull it over to the side of the pool. I tell Amy to climb into the raft and hang on tightly. “Why?” she asks, after lowering herself into the small inflatable boat. “I’m barely moving.” Walking back to a control panel that operates a wave machine, I press start and remind her to hold on. Small waves start rolling across the pool. “This isn’t too bad.” She shouts out to me as the waves gently lift her up and down in the raft.

I tell her that the wave machine is set to level four right now, but goes as high as 10. “I’m setting it to about a six now, or what I usually feel in the afternoon and evening.” She holds on and rides the waves and seems to be having a good time. After a few minutes of adjusting the wave levels up and down, I pull her in and have her sit on a nearby bench. “That was actually kind of fun,” she says, “I would do that again.” I smile and sit down next to her on the bench. “Are you ready for the next attraction?” I ask.

“Sure, just give me a couple minutes. I still kind of feel like I’m on the raft. I just need a little time for this feeling to go away.” We sit on the bench for 10 more minutes and I ask again if she’s ready. “Sheryl, why do I feel like I’m still on that raft?” she asks. “I’m still bobbing up and down and forward and back.”

“I guess I forgot to mention something when we started,” I say, waiting a couple seconds to get her attention. “Everything you experience in this tent will continue after the experience is over.”

“Seriously?” she says, looking at me skeptically. She jumps to her feet, only to lose her balance and fall back onto the bench.

“If you try to stand up quickly in a boat, you’ll usually lose your balance,” I say. “You need to take it slow. Come on, there’s a lot more to experience.” I hook my arm through hers as we start walking. Amy takes her first step and quickly tightens her grip on my arm. “What happened to all the floors?” she asks while wobbling back and forth.

“They have all been replaced with rope suspension bridges,” I say, explaining that this is our next MdDS experience “This is how walking feels to me now. Many people describe it as walking on a trampoline, a mattress, or in a bounce house.”

“How are you supposed to walk on this? There aren’t any handrails.”

“I wish I could say you get used to it, but I really haven’t. It makes everything harder,” I say, helping her walk toward the next attraction. She stumbles a few times and reaches for walls as we walk. Most of the time there aren’t walls and Amy puts her hands to her side as if walking on a balance beam.

“Stop clenching your jaw.” I tell her as we walk. She didn’t realize she was doing this and I explain that I often clench my teeth in a misguided attempt to balance myself. “It doesn’t work, and you’ll find yourself grinding your teeth.” She bites her bottom lip instead and continues to stumble toward the next attraction – a giant pinball machine. Amy looks much less enthusiastic than when we started and glances at the exit door.

pablo-1

“Now that you’re bothered by the lights, bobbing up and down from the raft, and having trouble walking, we’re going to play some pinball,” I say.

“How would you play a game that’s so big?” she asks, smiling weakly. “Where’s the ball?”

“You will be the ball,” I explain as I walk her to the middle section of the life-size machine. She looks concerned and diverts her eyes from the bright flashing lights on the machine.

“We’re only going to be using the center part of the game.” I say and place her in the middle of the mushroom shaped bumpers. “This is the part of the pinball machine where the ball gets stuck and you rack up a lot of extra points.”

“I don’t think I want any extra points,” she says, grabbing onto the nearest giant bumper. I give her a strong push and step back. Amy bounces wildly off the four bumpers, side to side, front to back, side to back, front to side, and so on. After a few seconds, I grab her arm and pull her out of the human pinball machine. She stumbles out of the game and finds another bench. “How do you feel?” I ask.

“I don’t know. My brain hurts. My head hurts. I’m rocking back and forth, or maybe side to side. I can’t tell. Plus I still feel like I’m floating or bobbing up and down in the ocean,” Amy says. “Are we done? Can I leave now?”

“Pretty soon. Just a few more things to explore,”  I reply. Amy grabs her head and leans forward on the bench. “Sheryl, how do I stop this rocking? I can’t even sit still.”

“You are sitting completely still. You’re not physically moving,” I tell her, explaining that her brain is creating the sensation of movement. “But when the symptoms get really bad, you may actually be physically moving. It’s sometimes hard to tell.” She shakes her head in confusion while she grips the base of the bench. I leave her for a few minutes and come back with a shopping bag.

“What’s that?” she asks as I pull a heavy garment out of the bag. “This is a magnet vest,” I say, setting it across her shoulders and helping her pull her arms through the bulky garment. “You’re going to wear this for a few minutes, and we’ll be walking down a special hallway.”

“Okay, as long as I don’t feel like the ground is moving when I’m walking.” She looks at me and I shrug, then watch her face as she realizes what’s about to happen. “You mean to tell me that I’ll have some weird magnetic pull at the same time I try to walk on a rope suspension bridge?” Once again I take her arm and lead her forward. Every time she takes a step, a huge refrigerator appears in front of her and the magnet vest drags her forward while the floor is rolling underneath her. “Ugh, this is awful! It’s like someone is trying to push me to the ground.” I take the vest off of her after a few minutes and we walk back to the bench.

“I still feel like I’m being pulled forward,” she says, resuming her slumped forward position on the bench. “How can I be feeling all of this at once?”

“That’s pretty common. The gravitational pull is one of my least favorites. I often feel like I’m being dragged out of bed,” I say. I describe it as being a hot dog on one of those roller grills in a convenience store, except the grill is broken and it only rolls one direction. She grabs her head again and I suggest we take a break.

Directing her to the corner of the tent, I open the door to a small café. It’s a tiny room decorated in busy checkered patterns plastered across the floors and walls. It has just one small high top table in the center of the room. “Have a seat,” I instruct her and she climbs onto the only chair available – a tall barstool with no back or arm rests. She immediately leans forward and grips the wobbling round table.

“What’s happening in here?” she asks, starting to rock visibly in her chair.

“Things like small spaces and busy patterns can increase the symptoms you’re experiencing. Plus sitting on a barstool can also make you feel unbalanced,” I say.

“I can’t stay in here. I need to get out of here.” Stumbling off of the chair and through the door she asks, “Now can we leave?” I shake my head and take her to a large “Whack a Mole” game situated near the café. “I’m pretty good at this,” Amy says, grasping the game for balance and feeling her hand around the edges of the game. “Where’s the mallet?” she asks.

“There’s no mallet,” I reply. “You have to try to smack down the moles on your own. Each one is labeled with a different MdDS symptom. Are you ready to start?”

“Not really,” she says as I press the start button on the game. The moles start popping up all over the board as she frantically tries to push each one back down using her hands.

Rocking, Swaying (whack), Bobbing, Gravitational Pull, Poor Concentration, Headaches (whack), Trampoline Walking, Rocking, Ear Pressure (whack), Poor Balance, Sound Sensitivity, Head Pressure, Fatigue, Gravitational Pull (whack), Light Sensitivity, Nausea, Headaches (whack), Bobbing, Ringing in the Ears, Brain Fog, Trampoline Walking (whack), Fatigue, Pattern Sensitivity, Rocking (whack), Headaches, Swaying, Poor Balance, Gravitational Pull, Rocking, Bobbing.

The game ends with a mocking tone and displays Amy’s score – the lowest score in the history of the game. “That was terrible,” she says. “I hardly got any of them, and the ones I did hit came right back. I couldn’t even focus.” She shakes her head and collapses onto the nearby bench. “Do you have all of those symptoms?”

“I’ve had most of them at one time or another and I always have the rocking, bobbing, trampoline walking and gravitational pull,” I say. “Having MdDS can feel like a game of Whack a Mole for many of us. We have good days, bad days, new symptoms, old symptoms. It’s frustrating and there isn’t any one thing that helps everyone.” Amy pulls her knees to her chest and wraps her arms around them. “Sheryl, can we leave now?” she asks, tears pooling in her eyes.

“Okay, let’s go,” I say and we walk unsteadily toward the exit of the tent. The outside light is bright as well, but Amy hesitantly pulls off the glasses I gave her when we entered the tent. “It’s all gone now,” she exclaims! “No more rocking, bobbing, swaying, headache, brain fog, light sensitivity, gravitational pull. It all went away!” She turns to give me hug, but sees my pained expression and stops. “You’re still in the tent,” she says slowly, now with tears rolling down her face. “You didn’t get to leave.”

“No, not today,” I say, looking away to hide my own tears. “Someday I hope,” I say, my voice cracking with emotion. She hugs me and walks me over to the car. “How about I drive you home? We’ll take the long way. That will take at least an hour.”

“That sounds good. Thank you,” I say, climbing into the car. Amy pulls out onto the road and the vibration of the car on the pavement starts to melt away everything. The rocking, bobbing, head pressure, gravitational pull. It’s all gone. I’m me again. I got to leave the tent as well, but just for the next hour.

Sheryl

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51 Responses to A Journey to MdDS Land

  1. Jennifer says:

    Excellent Description. I’ve printed it out so many times to give to people now. I’ve never been able to explain how I feel. Just fabulous! Gonna being hitting the 3 year mark in 1 month. In Pahrump, NV if there are any of you here.

    Like

    • sheryl1815 says:

      Thank you, Jennifer. I’m so glad you’ve found it helpful. I hope you can find some people near you. I’ve found several in Arizona (where I live). It certainly helps you feel less alone. Take care. Sheryl

      Like

    • Francesca gaffney says:

      Jennifer my date might be close to yours. In February I am at 3 years also. I live in California. Sheryl great job on Journey to MdDS Land.

      Like

  2. Jean says:

    How can I find a support group in my area, or if anyone in my area is suffering from MdDS?

    Like

    • MdDS.BDF says:

      The best way, Jean, is to make an inquiry in the Support Groups. In addition to the Yahoo which you are already a member of, there is our MdDS Friends Group on Facebook. Information on joining can be found here: bit.ly/MdDS-Support

      If you do meet up with fellow MdDSers, please consider Dining for MdDS to support our current fundraiser “Rocking Our Way to $40K.” Donations made to this fundraiser support research efforts for both classic and spontaneous onset patients.

      Like

  3. Lori K says:

    Hi, anyone in the Washington DC, NVa area? I’m 11 days new to mdds.

    Like

  4. Hallo Sheryl 1815 I’m also living with MdDS. You described this desease so well, it is just the way I feel. Thank you very much. Good luck. Gerhard.

    Liked by 1 person

  5. all I can say is Thank You! Been in the circus 17 years with MdDS

    Liked by 1 person

  6. Lisa M says:

    Living it daily

    Liked by 1 person

  7. Mickie Agee says:

    Sheryl, Congratulations on writing such an incredible story, describing so realistically what it feels like to live with MdDS! I have been in remission for two years this past September as a result of vestibular therapy and treatments with Dr Dai. I cried throughout your story because it brought back to reality the most horrible, debilitating syndrome I could ever imagine. Although I have had no MdDS symptoms since Sept. 2014, I do suffer from vertigo from a damaged inner ear, as a result of my one and only sinus infection. The vertigo is nothing compared to MdDS! I am often on a “merry-go-round”, and it does keep me aware of constant triggers that elevate my symptoms and triggers that could bring my remission to an end. I do not take a day of my remission for granted. I thank God each day that I am in remission and I avoid anything that I have been warned about that could cause a relapse. I constantly pray for remission for all of you. Thank you for sharing in such a vividly clear description. Mickie Agee

    Liked by 1 person

    • Jean says:

      Mickie…how many treatments did you have with Dr Dai? Do you do vestibular therapy as instructed by Dai or are you doing therapy from someone else? So glad to hear your in remission for 2 years, so obviously the therapy is helping. How often do you go to therapy or have you stopped? I’m thinking about seeing Dr Dai as no one else has helped me for my chronic MdDS I’ve had for 16 years.

      Like

      • Mickie Agee says:

        Jean, I was in vestibular therapy for 8 months before I went to see Dr. Dai for treatments in September of 2014. I strongly feel that the vestibular therapy prepared me for Dr. Dai’s treatments. I actually went into remission during my five days of treatments with him while in NYC. I have had none of the MdDS symptoms since I left Dr. Dai. I was a level 9 when I arrived in NYC. I feel it is very important that when you have vestibular therapy that you have a therapist that is trained in working with MdDS. My therapist has worked with MdDS for over 20 years, and I have to travel four hours one way to see her. But it has been well worth the travel. I live in Nashville, TN and I go to see Dr. Gaye Cronin at the Atlanta Ear Clinic. She and Dr. Dai do communicate. She now treats me for vertigo from my damaged inner ear which is not MdDS. Dr. Dai is very open to doctors and therapists to visit him and explains and demonstrates his treatments. I would advise you to contact Dr. Dai’s office and explain your situation. He is very compassionate and will honestly tell you if he feels he can or cannot help you. I wish you the very best. If you wish to read the details of my therapy and treatments my story is: “Mickie’s Journey from Mal de Debarquement Syndrome to Disembarkment.” Take care! Mickie Agee

        Like

    • sheryl1815 says:

      Mickie, thank you so much for writing to me. I’ve been wanting to share something with you for a long time. I read your story back in June and copied and sent the link to my husband. This was a huge turning point for him, as he told me that he now better understood what I had been going through and pledged to be supportive with whatever I needed. Your story made a huge difference in my life! I wanted to see if I could pay it forward and write pieces that would help others understand (also wrote “Living with MdDS” published in August). Thank you for inspiring me and sharing your personal journey with all of us! Hugs and love to you! Sheryl

      Like

      • Mickie Agee says:

        Sheryl, thank you so much for your very kind and thoughtful words! You have no idea how much it means to me that my story made a difference in your life, and I am in awe that I inspired you! Your descriptive story certainly was an inspiration to me. Once I went into remission, my goal has been to give “Hope” to others and to hopefully make a difference in someone else’s life. So your words to me have certainly touched me and bring meaning that I have made a difference. I did laugh when I first saw the “Long Post Warning” on your story, because the first and only time I have ever seen it from the Foundation was on my story! Sometimes, it is so hard to shorten something that is so important to us. Thank you again from the bottom of my heart. You will be in my thoughts and prayers as I continue to pray for remission for you and all others with MdDS. Hugs and love to you! Mickie Agee

        Like

  8. Liana blake says:

    I don’t know how to message you

    Like

    • MdDS.BDF says:

      Valerie and Liana, you might try to connect through Facebook. If you’d like to join our private Support Group, click on the link at the bottom of this page. Be sure to respond to the moderator’s response to complete the vetting process.

      Like

  9. Kelly Rajner says:

    Well written and creative assimilation of we go through every day!

    Liked by 1 person

  10. Cara Bowen says:

    Wow, thank you so much for writing this. I have such a hard time explaining myself when people ask me how I feel, this is honestly the best description I have ever read. When I got to the end I burst into tears! I have shared to Facebook and have reposted on my blog. Again, thank you so much.

    Liked by 1 person

  11. Elaine Schlissel says:

    Thank you for sharing. You’re a wonderful writer. I’ve shared it with my friends. Although I am basically fine, I continue to try to educate and advocate.

    Liked by 1 person

    • sheryl1815 says:

      Elaine- Thank you! That’s so nice of you to say. I’m thrilled to hear you are feeling well now. That gives us all hope. And thank you for working to help educate others as well. It’s so important to continue to try to help people understand.

      Like

  12. Ellen Dean says:

    This is a brilliant description of what we go through with MdDS. I also have MAV so double whammy.

    Liked by 1 person

    • sheryl1815 says:

      Thank you, Ellen. It’s definitely a struggle to have MdDS along with other issues. Thinking of you and hoping you get some relief.

      Like

  13. Liana Blake says:

    This story brought me to tears, remembering how I tried making it through this. Doctors thought I was crazy and didn’t understand what I explainig. How would I do this as I get old. Then one day I had some dental work done and noticed there was some kind of connection. I went across the country to a specialist in Baton Rouge who did some adjustments and dental splint haven’t bounced in 5 years hope its permanent. I was the hardest time in my life.

    Liked by 1 person

    • Valerie Viertel says:

      Can you message me please? I want more info for my momma. Thank you, Valerie.

      Like

      • MdDS.BDF says:

        Valerie, we do not publish email addresses or phone numbers. If you are a member of our Support Groups, you are free to communicate with our many members. Links to both groups are at the bottom of this page.

        Like

      • Jean says:

        Valerie… you said in your post you had some dental work done before you developed mdds symptoms and there was some kind of connection. What do you think the connection is between dental work and your symptoms and how soon after you had your dental work did you start developing your symptoms?
        I too had a root canal done prior to developing my symptoms and I always thought that maybe there was some connection there, but I never heard anybody else that mentioned this except you. Thanks

        Like

      • Liana says:

        It was about 3 weeks after having dental work done but I didn’t see the connection until after 8 years of bouncing. On a routine cleaning and fixing a cavity I noticed less bouncing so I went to a specialist in balanced bites in Baton Rouge he had to make some adjustments on my teeth and made a special splint I sleep with that all the teeth hit at the same time so it’s balanced. I tried dents here in Michigan but they didn’t understand the connection. Wasn’t as easy as it sounds there were lots of adjustment on the splint first because just randomly adjusting the teeth can made the dizzy worse.

        Like

    • sheryl1815 says:

      Liana – So happy to hear you are feeling better these days. I don’t think I’ve ever read anything about dental splints and MdDS, but I’m glad you found something that helped you!

      Like

  14. Mary H. says:

    Wow, what an accurate description of what we go through! This is definitely something to share with others who don’t understand what our lives are like now. Sheryl, thank you for taking the time to do this.

    Liked by 1 person

    • sheryl1815 says:

      Thank you, Mary. I enjoyed writing it, as I really wanted to try to take people into our world. It’s hard to explain how we feel because it doesn’t relate to things most people have experienced.

      Like

  15. Kath pollard says:

    Thank you for this it’s so hard for anyone to understand what we are feeling even though we look perfectly normal I have lived with this nightmare for 8 years now it overwhelms your life just wish for one normal day or even an hour when I could think straight walk by myself or remember how to do sometimes the most simple things but the brain has different ideas for us

    Liked by 1 person

    • sheryl1815 says:

      Thank you, Kath. MdDS can be so frustrating. I’m sorry you’ve been struggling for so long. I’m thinking of you and hoping we all have some normal days soon. Hugs to you.

      Like

  16. Kerry Tucker says:

    Awesome depiction of living with MdDS. Entertaining read.

    Liked by 1 person

  17. Melissa Tupman says:

    Amazing story of what’s happening inside of us! I have so many tears after reading because I want this all to just go away! I’m so very tired!

    Liked by 1 person

  18. Tammie says:

    Sheryl… this story is amazing! Thank you so much for drawing such an accurate word picture of what so many of us have to live with. Maybe it can help those who don’t understand to better help their families or friends that suffer with this and are trying to explain how they feel. I know some Drs. that should read this.

    Liked by 1 person

  19. Jean says:

    Sheryl… thank you for posting this animated version of what we are going through every day of our lives with this horrible mdds. This was an excellent description of most of our symptoms, some of us have all of those, some of us have some of them and some of us have more than them. Hopefully, if everybody close to us reads this, it will give them a better idea of how we are feeling on a day-to-day basis outside of using the words” I’m dizzy”! Maybe we can even go a little bit more compassion from our family and friends who seem to dismiss this very easily through a misunderstanding of this disorder. God bless!

    Liked by 1 person

    • sheryl1815 says:

      Jean- Thank you so much. I hope this helps some people, and helps some family members better understand our condition. I think many of us have used the word “dizzy” before, but I find that it’s not that accurate for many of us. For me, the room is never spinning — I’m just bobbing up and down, rocking front to back, and occasionally swaying side to side. Just on the boat — all the time.

      Like

      • Jean says:

        Hi Sheryl…just came back from my primary care drs.appt. I told him about MdDS since I’m having a really bad flare up with blocked ears, eustachian tube disfunction, tinnitus, increased “dizziness”, headache. He looked it up on his medical phone…said clonazepam is given alot for this but there’s really no known treatment. I told him about your post & he wants me to email it to him so he can better understand me when I tell him how I’m feeling so horrible. So thank you for your post…I hope more of us can educate doctors in every specialty about MdDS! Because few of them are even aware that it exists!!!

        Like

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