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Like so many of you, I too had been told by medical doctors that there is no cure for MdDS. “You just have to learn to live with it!” But how do you do that?

When I wrote my first story in 2015, to give people HOPE for living with this horrific bizarre syndrome, MdDS, I was in complete remission and, I thought, cured! I felt my first story was finished. But I am back again to tell you the rest of it. Spoiler alert: it’s still about HOPE and remission!

Mickie’s Journey from Mal de Debarquement Syndrome to Disembarkment AND BACK AGAIN!

In my first story, Journey from Mal de Debarquement Syndrome to Disembarkment, I credit Dr. Gaye Cronin and Dr. Mingjia Dai, PhD, for my remission. To protect my remission, I very carefully followed every directive these doctors gave me. Never once did I get on a boat, even though I had one. My parents had a home on the lake, and I was water skiing at the age of five. Never did I set foot on a treadmill even though that was the way I previously exercised. I gave my treadmill away when Dr. Dai warned me it could take me out of remission. Cruises were mine and my husband’s favorite trips, and we planned to spend our retirement cruising, that is until our fifth cruise, which caused my MdDS. Never will I cruise again and take the chance of facing this monster of MdDS again.

And even though riding in a car makes me feel normal, I do not drive. I can’t. Simply stopping at a red light makes me lose my perception and the sudden vertigo from a damaged inner ear makes it impossible to drive. Dr. Dai always told me, “Dizziness and vertigo are not MdDS.” Testing revealed that I have a damaged right inner ear that is thought to have been caused by a serious sinus infection. It was my first sinus infection. I feel it came about through stress the week my son received orders to be deployed in 9 days to Afghanistan. His wife found out the day before that she was expecting their second child, the first being only two years old. I managed that inner ear damage while enjoying my hard-won freedom from MdDS. But that peace was unexpectedly shattered.

After a fabulous 2½ year remission, a single incident took me out of remission.

More than two years in remission, and Dr. Gaye continued to be my “safety net, my life saver,” taking care of my vestibular system. During one of our appointments, I just happened to casually mention I had a routine colonoscopy scheduled. She immediately became concerned. She and some of her colleagues had found that some of their patients that were in remission from MdDS, who also had another vestibular problem (as I did, my damaged inner ear), had gone out of remission when given Propofol. It had not been researched, but they had seen it happen to too many of their patients. Dr. Gaye immediately put it in writing that I could not have Propofol and that I needed conscious sedation due to my being in remission of MdDS.

I gave my Primary Care Physician (PCP), who was arranging the colonoscopy, a copy of the paper from Dr. Gaye. Since my PCP had been with me for years, before and during MdDS, she knew the severity I had been through. She set up a consultation with me and the gastroenterologist (GI doctor) to explain why I could not have Propofol. She told me, if the GI doctor did not agree, to run out and she would find me someone else. Knowing the GI doctor well, my PCP did not expect them to disagree.

The consultation with the GI doctor went well, I thought. I gave them the paper stating I could not have Propofol and I needed a conscious sedation. They agreed, promising me to make sure no one would give me Propofol. Being promised by the GI doctor, a colleague of my PCP, never did I or my PCP question her agreed decision. Even so, on the day of the procedure, my husband announced to the prepping staff, “Everyone does know she cannot have Propofol? And she is to have a conscious sedation because she is in remission from Mal de Debarquement Syndrome.”

When I woke up from the colonoscopy, knowing I was not supposed to be put asleep and my husband was not in the room as expected, I was concerned. Then I realized I had a horrible headache, double vision, brain fog, and high BP. My husband came in and was immediately alarmed. I asked the nurse to write down the anesthesia I was given. She said, “I’m not sure how to spell it. Google Michael Jackson. It’s what he died from.” My heart dropped. Propofol. How could this have happened with all the precautions we took??? DEVASTATION did not begin to describe what I felt. But I wasn’t ready to give up. I immediately reached out to my original team to start the fight all over again.

Keep the Faith. Do not ever give up HOPE!

Dr. Dai and I were in close contact but he never told me he was dying of cancer. I know he did not want me to give up my Hope. A few weeks before he passed, Dr. Dai contacted me to see how I was doing. I did not know his diagnosis. If I had, I would have told him I was much better, because I know how hard he had fought to find a cure for MdDS. He took my loss of remission as hard as I had. His final words to me were, “Mickie, keep the Faith. Do not ever give up HOPE!” I could not walk without a cane but I responded, “I will never. I can’t imagine living this way the rest of my life.” When I learned that Dr. Dai had passed, I felt as if I had lost a close friend. A friend I’d made a promise to.

If I found remission once, surely, I could again???

Grieving the loss of Dr. Dai, I still had to find answers. I found a new neurologist and, after testing, an MRI showed I had suffered a stroke during the colonoscopy in the pons of my brain stem. My neuro-ophthalmologist gave me prisms and then a “pirate’s patch” for the double vision. When neither worked, he said there was nothing he could do to help me. But Dr. Gaye researched to help me. She left no rock unturned until she found glasses with peripheral sides that greatly help the double vision. When it was going to take six months to get an appointment with a migraine specialist in Nashville, Dr. Gaye found me a migraine specialist in Atlanta that month. The stroke also caused Chronic Regional Pain Syndrome (CRPS), which has taken a huge toll on my health. Despite these new challenges, I continued the one thing I knew could help: movement.

My balance is improved by a routine of constantly doing vestibular exercises.

I have no doubt that continuous vestibular therapy led to my remission both times. When I arrived at Mt. Sinai the first time, Dr. Gaye had already exposed me to everything Dr. Dai would do. She already even had the stripe app on my phone. Dr. Gaye, my husband, and I even came up with an improvised chamber made with styrofoam panels taped together, and a projector to project the stripes. While Dr. Dai’s research was more precise and on a larger scale, funded by a research grant, I know that Dr. Gaye’s vestibular therapy prepared me for those treatments in 2014.

In 2024, after 47 years of dedicating herself to more than 35,000 patients suffering from vestibular, facial paralysis, and balance disorders, and 10 years of providing me with the exercises and tools I needed, she retired.

Vestibular therapy takes time and endurance, but I am an example of it finding me remission, not once, but twice!

Yes, my husband drove me 4-5 hours one way, once a month for 10 years, for therapy. And, yes, the vertigo, dizziness, nystagmus, and double vision from the damaged inner ear and stroke are still here. But the MdDS Monster is gone!” With continuous vestibular exercises and maneuvers, step by step, year after year, I found relief from the rocking, swaying, bobbing, trampoline walk, gravitational pull and push. Other symptoms gradually went away. I have been in remission again for a few years now, and I am proof that with commitment and the right team, you don’t have to “live with it.” You can find solid ground again. Never give up hope!

Keep the Faith,
Mickie M. Agee

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