I believe that pictures are the most beautiful things that exist. You are capturing a moment in time that lasts forever. Everything stops for that moment and is still.
Little did I know that this picture would be my last ‘still’ moment.
I wanted to capture the moment of the wanderlust girl I am, well perhaps the girl I used to be.
In November 2017 I took a trip to Las Vegas, Nevada with my family. I had just turned 22 a couple months prior. After a day of flying and going up 107 stories to a restaurant in the sky, I felt a panic I had never felt before. It felt like I was walking on a bouncing floor. It felt like I was rocking and swaying with the room. I felt it sitting, standing, and laying down. It caused me to have my first panic attack. I could feel my chest get tight and hot, and my hands started to get clammy. I remember turning to my mum and asking, “What is happening to me?”
A day or two passed, and the feeling stayed with me. I flew back home and thought, “I just need some rest, and I’ll be okay.”
I’m still resting 9 months later.
I have gone to countless doctors including my primary care doctor, ENTs, neurotologists, and neurologists. I was referred everywhere. I have done every testing they could think of, all the imaging they could take, all the physical exams they could do. The last testing available was in March 2018 when I did VNG testing. I was told I had a low gain vestibular ocular reflex but they were unsure if that was causing my symptoms because it was a grey area.
I did vestibular exercises with my physical therapist as well as home exercises for 4 ½ months. I saw some improvement, but I was nowhere near where I used to be.
In August 2018, I returned to my dream job, my second year of teaching. After a couple weeks it felt like a wave was hitting me, and I knew it had returned with a vengeance. I went to see a neurologist and a neurotologist. The neurologist recommended me to the neurotologist, and the neurotologist looked at me for 5 minutes and said, “I don’t know. I’m going to refer you somewhere else.” There was nowhere else to go.
My mum was doing the last bit of research she felt she could do and came across MdDS. She called me and said, “This is what you have.”
We found out that there was a possible treatment at Mount Sinai in New York. We did the proper paperwork, and I got the email that I was a candidate for the treatment.
In a couple weeks I will be conquering my fear of leaving my small town in Kansas to endure tight spaces, flying, and crowds by going to one of the busiest cities in the United States for a four day possible treatment plan.
I am 23 years old, and I have MdDS.
I want to be an advocate. I want to raise awareness. I want to help others.
My life might not be ‘still’ right now like that picture I took in November 2017, but who knows maybe I’ll take a new ‘still’ picture of the new version of Miranda in the beautiful New York City.
— Miranda McComber, 23
Ready for an Instagram Takeover?
Take Miranda’s journey with her and get a sneak peak at the lab at Mt. Sinai, the process and more! Miranda will be taking over our Instagram account while she’s in NY. As a social media ambassador for the MdDS Foundation, she’ll be posting and sharing her experiences as much as she can. Follow us on Instagram now so you don’t miss her first post.
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I took my son on a cruise for fall break October 2018 and now have this syndrome. How can I get the information to sign up to be seen at Mt Sinai?
http://mdds.nyc/how-to-make-an-appointment/
My mum aged 74 has now been suffering from diagnosed MdDS for 3 years. After getting off a cruise it just never went away (this was her 20th Cruise) and had never had this before.
She has now made herself pretty much house bound and only goes shopping and uses a trolley to help her feel stable.
We are in Queensland Australia and have been trying to research this for her.
So please any suggestions on ways to help would be greatly appreciated as she doesn’t have any good days, so she realises she is probably one of the people who this never go away for. She says it’s like walking on a trampoline all the time.
Cathy, your mum may be interested in joining one of our Support Groups. MdDS Friends on Facebook is restricted to MdDS Warriors only but we may make an exception for you if she doesn’t have a Facebook profile. From locations around the world including Australia, members are caring, have many experiences to share, and can provide advice and recommendations. You are not alone!
I’ve had MdDS for 10 weeks last fall/2017. I was just diagnosed today since I had to wait a year to see an Ear, Nose and throat specialist.
Luckily my ” rocking” hasn’t returned, but ever since then, I’ve had periodic inner ear pain a couple of times a month on average. Has anyone else experienced this?
Fran, you may be interested in joining one of our Support Groups. Membership is restricted to MdDS Warriors only but they hail from around the world. They are a caring group with many experiences to share and can provide advice.
How do I find out about a support group? I have been suffering with MdDS for over 20 years and after countless doctor visits, medication, physical therapy, etc…I finally found an ENT this Friday that pinpointed my symptoms moments after giving my detailed history. Of course I am overjoyed knowing I am not crazy but so upset to learn that I might be a prisoner to this for the rest of my life. I am so overwhelmed 😞
Bekki, you will find many with shared experiences in our online support groups. We have two. The one powered by Yahoo is email-based. The one on Facebook is more popular. https://staging.mddsfoundation.org/support/
Best of luck to you!! Please let us know if the Mt. Sinai treatment works for you! I am interested in doing it but live in Chicago so I’d have to get started with applying. I’m not sure how to even begin the process.
Mt Sinai and there therapy WORKED for my wife. She picked up [sic] MdDS from a Cruise late summer or 2016…. had moderate to severe MdDS until Feb of 2017 when we visited Sinai for a week. We only needed 4 days of treatment and saw an 80% to 90% improvement…. within 2 weeks all remaining feelings of the symptoms were gone. While she is still afraid to fly, and she will never get on a boat again, she has been symptom free for over 1.5 years now. Dr. Dai, thank you!
Forewarning- the treatments seem odd, and while based on science its still partly trial and error… but I think if you believe they can help, it just might.
MdDS is a neurological disorder. While its etiology is not yet understood, we do know that MdDS is not a contagious disease. A great deal of evidence-based medical and scientific journal articles may be found on our Biomedical Literature page.
We are glad to hear that your wife benefitted from the intervention at Mt Sinai, and hope to hear similar success stories from Miranda and others. More evidence-based research is necessary, and we hope these anecdotal reports generate interest among researchers.
Best of luck in NY at Mt Sinai – i have been considering that trip but a bit hesitant. I went thru the same type of treatment in Boston and had no success.
Keep the faith and have high hopes.
MJM
Hi Miranda. I am sorry that you’re going through this. I’ve had mal de debarquement syndrome for 2.5 years and a little over a year ago also developed a generalized anxiety disorder because of the MdDS. So, I know what you’re going through. Please don’t be afraid about being in NYC. Yes, it’s noisy and fast-paced, but you will probably settle into it quickly enough–perhaps may even enjoy it! Also Mt. Sinai is in a very nice part of the city, only a couple of blocks from Central Park, which is great for walking and getting a break from the traffic and noise!
I underwent the Mt. Sinai treatment in April 2018 and found Drs. Dai and Yakushin to be very kind, patient, and generous. I think they will be able to help you, but be aware, if you aren’t already, that the treatment can take a couple of months or more to take full effect.
Enjoy your trip and the process. I will be following your posts.
Patricia
I’m saying a prayer for you Miranda and I hope your treatment at Mt. Sinai is successful.
My first bout of MdDS slammed me about 18 years ago and lasted about five months. I’ve had three bouts since, of varying lengths, with 11 months being the longest. I have been ok flying, but always premedicate with Clonapin (an anti-anxiety drug). I have not been so lucky with boat travel, and suffered my longest bout after a 5-hour train trip.
I hate how this condition has restricted my active life, but lots of people live with restrictions, so I try not to dwell on that.
I also was lucky enough to be treated at Mt. Sinai. Stay positive ! You will get better!
Hope you get some relief. Time helps. I’ve had it for 8 years. Just avoid triggers and stress and the waves will subside. But always remember, it’s there waiting.
In my prayers hun ! I’ve had this since February 2017 and it was Bad til April thus year ! Felt really good then Bam! Back Again ! Hope all goes well and I look forward to finding out how you get on xxx
thank you 🖤
thank you! 🖤
Good luck, Miranda.