LeeAnne suffers with dizziness that isn’t vertigo.

LeeAnneMy name is LeeAnne and I have had MdDS for 5 years. After my third cruise, an 8-day cruise with rough seas, I noticed a change in my eye sight and had trouble reading the menus. And when I debarked I never got my land legs back. I saw my family doctor and explained my symptoms to him and he referred me to two neurologists; one said it was an ongoing migraine and the other said vertigo. Neither could explain the clearing of symptoms when driving. Both prescribed strong meds that just made me feel awful! Luckily, my chiropractor was taking a chiropractic neurology course with Dr. Groves, in association with Dr. Carrick. When I explained to my chiropractor my symptoms he told me right away what it was. 

Canada doesn’t seem to understand functional neurology or any sort of dizziness that isn’t vertigo, so I sought treatment from Dr. Groves in the US. Although some of the brain exercises, which involved some body movement as well as eye movement, minimized symptoms for a while, stress and my daily routine would change the effectiveness.

This disease has radically altered my life, I was unable to read for approximately four months, the ringing in my ears was deafening, and I couldn’t focus or retain information; and the rocking, bobbing and swaying made me feel self-conscious as people may think I was drunk. My lack of balance made my job as a construction safety officer/office manager impossible as I am a safety hazard! There have been periods of severe depression and severe symptoms, and others when I rely on muscle memory to get me through the day.

Simple tasks like folding laundry or small motor skill movements or repetitive motions seem to be my triggers, as well as vibrations. I have been unable to exercise other than walking and now have developed astigmatism in both eyes. It seems to be unclear if this is associative to MdDS.

It is imperative that sufferers have a good support system and some hope. My family doctor is very open minded to ideas I bring in. My husband, Darrel, is my biggest supporter. He’s always there for me when I get down, doing research for me and keeping a positive attitude.

Hope for a cure and hope for a future!

Five years later I still have ringing in my ears, eye strain where working on a computer can be debilitating for days, and stress and muscle tightness from trying to stop the motion has given me neck and back issues. I have learned that sometimes you just need give it a rest. The stress and frustration of trying to find a voice or a willing ear can be overwhelming. Sometimes you just have to say, “Today I’m just happy to be alive and to enjoy the people and things around you.”

Today I am thankful for the opportunity to share my story. Raising awareness and research in the medical field as well as sufferers is so important!

Thank you,
LeeAnne Nagel

hope it's in our genes

A Message From the Foundation

Sharing stories strengthens our camaraderie by removing some of the isolation we feel as sufferers of a rare disorder. There is still time to #ShareYourRare and tell your story. Send it along with a photo to connect@mddsfoundation.org. Include the hashtag #ShareYourRare so we know right away that you want to share your story with the public to raise awareness of MdDS, on Rare Disease Day 2/28/2018 and beyond. The more that are aware, the more interest we may raise for funding and research for our cure. #ShareYourRare Be#InvisibleNoMore

LeeAnne suffers with dizziness that isn’t vertigo. was last modified: January 31st, 2018 by Warrior & Contributing Writer

5 comments

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  1. Nancy Pecor

    Lee Anne I understand some of your issues, it helps to know you are not crazy. I’ve had Mdds for 15 years. Tried lots of things but it won’t go away. My best time is doing water aerobics, because the water supports you so you have better balance. It’s the only place my muscles can relax. And I can move with freedom, of course when you get out you notice the bounce all over again. Still a little relief is precious. Hang on and find what helps you.

  2. Debbie

    HI LeeAnne, there is a chiropractic neurologist in Edmonton, AB if that is closer to you. He has many hours of training with Dr Carrick.

  3. pamla Kennington

    Lee Anne, hello and thank you for your post! I have been rocking and swaying for 18 years but didn’t get diagnosed until 2001 at UCLA with Dr. Baloh. It was really hard year from 2000-2001!! But, though I have never had remission since my diagnosis what a blessing and source of not feeling alone (and a little crazy) as support groups popped up on social media and The MdDS foundation was established. Hopefully, with the new research there will be a break through and a treatment but until then stay strong.

  4. GW

    I completely sympathize with you. I am also working with a functional neurologist but cannot report improvement quite yet. What I can’t understand and haven’t seen explained is why many experience so many other symptoms other than the rocking or unsteady sensation – eye issues, ears, headaches, neck aches, depression, etc. Is it all attributable to fighting this each and every day? Wish we had the answer. It’s just crazy that driving makes everything just fine. Best of luck to all.

    1. MdDS Foundation

      GW, you may be interested in the PloS ONE article “Metabolic and functional connectivity changes in mal de debarquement syndrome.” It is one many medical research articles available in the Professional area of this website. The article discusses areas of relative hypometabolism, and both increased and decreased connectivity between areas in the brains of MdDS subjects. Research is on-going, and new articles are listed as they become available.

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