Hi All. I first experienced MdDS in 2002 on a flight from Los Angeles CA to Dubai UAE. I was 24 years old, and I am a female. I went to the emergency room only to leave with all vitals, blood work, tests etc. normal and with no explanations. About two weeks later, with symptoms still persistent, I had to get on a flight back, which made this episode more intense causing vomiting on the plane. After I arrived home it took about 2 weeks for it to go away. It didn't happen again until flew to Hawaii from San Jose CA in about 2005. Again, doctors have no idea what it is. Lasted about 2 months. Again on a trip to Hawaii in 2013. This time I went to a doctor in advance and she suggested that I take a decongestant and wear ear plugs and also a water pill. Did it, got off the plane, it took an hour for it to kick in. This time, the plane ride back helped rid of it, but I didn't do anything at all to promote this. Now I have flown from San Jose CA to Los Angeles CA many times with no problems! So elevation and duration make a difference. But here is what blind sided me. Starting 2015 the symptoms started for no reason at all! Since then they just come and go. Sometimes it will last a few seconds, and other times for a few months. That is when I finally got diagnosed with MdDS. I saw an ENT and Neurologist. Got an MRI, all looked good. They don't really know why this happens but here is what I have been told...migraines, possible brain damage from drug use in the past, vestibular damage (which was ruled out for me). Trigger can be stress, traveling, not enough sleep, certain foods/drinks associated with migraines, hormones (and yes I happen to start symptoms about a week before my cycle).
What I experience:
Bobbing motion like walking on a trampoline, but I have excellent balance
Clumsiness, walking into things like door jams
An aura around all objects
Sensitivity to Light and Sound
Extreme Anxiety, heart palpitations, shortness of breath, upset stomach
Extreme muscle tension in neck and upper back/shoulders with pain
Extreme fatigue, I can easily sleep for 10 -12 hours
Loss of appetite
Fogginess and lack of comprehension, brain feels overstimulated quickly
Confusion, difficulty making quick decisions, forgetfulness, losing thought
Driving alleviates bobbing symptoms
Quitting cigarettes seems to trigger symptoms (not sure if this was coincidence but it's happened every time I quit)
I even got physical therapy for 8 weeks at Stanford Hospital, with exercises that are suppose to improve your eye and brain coordination, balance, and to train your brain to process movement better, $4000 later I still get these horrific episodes. I have also tried Acupuncture with no long term success, however it did help alleviate symptoms for about an hour after the session.
I am going to try Green Tea, Regular Exercise, Valium or Ativan, Proper Rest, Diet, Routine Massages and acupuncture, Water Pills around menstrual cycle, Decongestants on planes and ear plugs and what ever else I have read and been advised by doctors to help with this disorder. However, I feel that researches really need to invest some time and money into this disorder and pin point what the issue is and why it happens and how they can help. I can't imagine I will be able to live with this as I get older. I feel for each of you out there that suffer from this. We appear completely normal to the public but no one knows or understands what we are actually going through. I hope we get some answers in the near future.
What I experience:
Bobbing motion like walking on a trampoline, but I have excellent balance
Clumsiness, walking into things like door jams
An aura around all objects
Sensitivity to Light and Sound
Extreme Anxiety, heart palpitations, shortness of breath, upset stomach
Extreme muscle tension in neck and upper back/shoulders with pain
Extreme fatigue, I can easily sleep for 10 -12 hours
Loss of appetite
Fogginess and lack of comprehension, brain feels overstimulated quickly
Confusion, difficulty making quick decisions, forgetfulness, losing thought
Driving alleviates bobbing symptoms
Quitting cigarettes seems to trigger symptoms (not sure if this was coincidence but it's happened every time I quit)
I even got physical therapy for 8 weeks at Stanford Hospital, with exercises that are suppose to improve your eye and brain coordination, balance, and to train your brain to process movement better, $4000 later I still get these horrific episodes. I have also tried Acupuncture with no long term success, however it did help alleviate symptoms for about an hour after the session.
I am going to try Green Tea, Regular Exercise, Valium or Ativan, Proper Rest, Diet, Routine Massages and acupuncture, Water Pills around menstrual cycle, Decongestants on planes and ear plugs and what ever else I have read and been advised by doctors to help with this disorder. However, I feel that researches really need to invest some time and money into this disorder and pin point what the issue is and why it happens and how they can help. I can't imagine I will be able to live with this as I get older. I feel for each of you out there that suffer from this. We appear completely normal to the public but no one knows or understands what we are actually going through. I hope we get some answers in the near future.
Hi Mel, I have had a constant set of sensation for about 2 weeks ago. It started when I gave up breastfeeding and took the train. I just got my period yesterday and am hoping that I’m lucky enough for it to disappear just the same as yours did. Did you notice a change as soon as your period began or a few days after. Thank you.
Sorry, the message should say I have a constant swaying. Thank you
Hello, the same thing has happened to me except when I quit breastfeeding. Did the symptoms go as soon as the period started?
If not, how long did this take. I’m so desperate for relief! Many thanks.
If not, how long did this take. I’m so desperate for relief! Many thanks.
FLEM ? what is that exactly?
I agree with the message that says this is a very important study and it needs a lot more attention, I have even thought of suicide, it's that bad.