Mal de Debarquement Syndrome Described by a Woman Living with the Syndrome
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- Опубліковано 6 вер 2024
- An explanation of Mal de Debarquement Syndrome, a little known and often misunderstood disorder that usually is associated with a passive motion experience such as a cruise, flight or train travel.
Thank You For This Information --My Years of Suffering at Last Undersood Doctors Everywhere need Informing .
I have MDDS and I have always felt kinda off balance or slightly moving and I thought it was normal…
And after any type of interaction with water or spinning (a couple of days ago I was spun around a ton by my dance partner and i feel like i’m still bobbing), I bob like a human bobble head!
How fun!
And what’s better I get worse when I come down from my caffeine high every day after school (because i also have to deal with school while feeling like i’m on a boat).
The combination of dysphoria bc of my chest, my anxiety, depression, and this syndrome make school so much fun to deal with
wheeeeee
I had MDDS for 8 months. I had no idea what it was and had every test imaginable. Physicians thought I was crazy and suggested I just take antidepressants because they couldn’t find anything physically wrong with me. The only time I felt somewhat normal was when I was driving.
There definitely needs to more awareness for MDDS, it’s truly debilitating.
Hey do you still have mdds?
Montana Klich Hi! It finally went away after after about a year, thankfully! I still will experience vertigo from time to time but nothing like when I had MDDS.
Elizabeth Burke thats good to hear! Happy for you. Who diagnosed it? And i think i may have mdds with my symptoms as well. All my tests came back normal. And while driving or riding in a car i feel like the symptoms fade away for the time being.
Montana Klich Thank you! I was diagnosed at Mass Eye and Ear. I had been through numerous Neurologists and ENT’s who kept on saying nothing is wrong. I finally begged my DR to get me an appointment in Boston and they were able to help me. Unfortunately, there was not much I could do for it and the only time I felt relief was when I was driving or sleeping. They did send me to PT, but I’m not sure that helped at all. Honestly, I was scared I would have it forever, but it did eventually go away. I truly hope you can find some relief! If the DR’s don’t believe you, insist on continuous referrals. I also think that the DR’s I went to in the beginning had not seen many cases of MDDS so they probably didn’t understand that I had this.
Elizabeth Burke what is pt? And yeah i can tell that this isnt highly diagnosed according to the web haha but my next apt with my doctor is in 2 weeks and im most definitely going to bring this up to him. And what tests did they do to diagnose you?
I’m very sorry, I hope god blesses you soon and you live a full active and fun life ...
@aileenmotz yeah i was on a cruise last week and didn't feel anything significant until i got all the way home the next day, it's now been about 5 days since disembarkment and I still feel motion as if I were still at sea.
the odd thing is, when I first got on the boat I had only a very little bit of trouble adjusting to the motion and didn't get nauseous. it seems reasonable that one's physiology should readjust to land as quickly or more quickly seeing that this was my first ship excursion.
I've had this for 2 years now. It is absolutely awful & debilitating. I'm going to try some estrogen (and progesterone) to see if it may help as I'm going through perimenopause and there's a Dr Browne here in Australia that thinks it may be related to estrogen. Good luck everybody, we need answers & a cure asap! 🙏💕
Update?
I HAD THIS FOR 6 MONTHS AFTER TAKING MY VERY FIRST CRUISE. IT WAS FOR 8 DAYS. I LOVED THE CRUISE BUT I'M TERRIFIED TO GO ON ANOTHER DUE TO THIS. 😞
dont worry i will tell u cure of this.
how did it go away?
@@beaware3727 tell ME 😂
Mine lasts about 2 weeks after a motion event (plane, boat, etc). However I am usually dizzy for a few seconds after riding in an elevator for a little as a single floor change.
I've had this for 10 years now.. would sure like to tell you that it gets better, but it doesn't. Some days, as you know, are better than others. Today has been a rather rough day, which made me turn once again to the internet to see if there have been any advancements. It's been quite a while since I've done a search. It's sad/comforting to find that others are experiencing what you are, when it's such a misunderstood "disease". Thanks for sharing your story, and best of luck to you!
It does and can get better.
i aslo have it for 10 years now. I am still having it, and i had been trying to kill myself
@@ghukifymooth3827 I don’t know exactly why, but it disappeared one day, and I haven’t had it for years... I did eye strengthening exercises, I know that much, and it stopped within a couple weeks. Could have been vitamins or hormones I was taking, or a combination, or none of those things. I’m so very sorry you have been going through this 😔 Don’t give up... 💐🌹💞🙏
@@dizispell what vitamins did you take for mdds? im going through this right now and its hell to live with. could you also provide me the eye exercises that helped you it would mean alot. Thanks
@@ScottishMagic89 I upped my vitamin D3 to 2000IU daily - you should talk to your doctor and get tested for deficiencies. For eye exercises, grab a pencil and hold it out in front of you, then, while keeping your eyes on the pencil, slowly move your head to the left and then the right. Do that looking up and down and diagonally as well - moving your head in the opposite direction of your eyes. Google vertigo eye exercises. I don’t know if this actually helps or if it was just a coincidence… I’m so sorry you’re going through this, and I hope you get relief soon💞
I haven't been diagnosed yet but its been A week since I flew on an airplane for my first time, I have been unbalanced and shaking ever since. Im scared it will never go away. Its horrible, im tired, everything is constantly moving and I can't take anymore. Its hard to walk or function. I feel disabled, I can't be disabled.😭
Do you still suffer from the symptoms? I'm scared I have this...it's 6 weeks after the cruise and the Epley maneuver hasn't helped...
Hi Sissi,
How are you doing? I've have this for a month now and extremely scared. Did you ever get a positive outcome? I hope so.
Unfortunately, it is now 2017 and Terri does still suffer with MdDS.
It’s been over two months now since my first cruise. I cant hardly do anything. A doc diagnosed it. Im taking amitriptyline which doesnt seem to help. Vestibular therapy costs too much for me so Im going to try exercises at home.
There are many in our support groups that can give advice on their experiences with at-home therapies. We hope you find the answers you seek. mddsfoundation.org/support/
I had it for 5 years. So depressing.
Had? You no longer have? Yay!
What helped You get over it?!
had it for 10 years. I dont want to live anymore
How to treat it, I suffer from MDDs for 4 years. ???
Hi Nancy. What made your mdds go away? Meds or just naturally went? Very interested to know x kind regards x
What is the treatment for MDDs?
is it ok to bike if suffering from mdds or other types of vertigo
We cannot offer advice but if you have been diagnosed with MdDS or feel strongly that you are suffering with MdDS, you may ask other sufferers what their experience has been by joining one of our online support groups. More information here: www.mddsfoundation.org/symptoms-scale/coping-with-mdds/support-groups/
I jump rope, bike and hike. My physical therapist said keep active.
@@meganhenry5795 how are your symptoms now? so its good to stay active?
Can you tell us your experience as opposed to reading off a script? This is zero help.
does mdds cause a swimmy head
MdDS is a neurological condition and cognitive impairment is a symptom which some patients refer to as "brain fog."
Have you got cured?
How it started with you
@@Optimus174 ik this question is not for me but i am going to say it. I was on a swing, and came off, that was when it started. All because of a swing, i am suffering from this for 10 years
@@ghukifymooth3827 😢😢😢😢