I’m looking for an effective treatment for MdDS. 32yr female. Not on any medications. Ongoing symptoms (more than a year) of rocking/swaying feeling when standing, sitting or lying down.
Symptoms dissipate when driving, and light walking.
I get it when sitting standing when I walk slow I notuce it if I walk fast it’s not so bad x
Hi. I’ve had it for almost four years. I take venlafaxine, lowest dose, and amitriptyline, lowest dose, which def help. I take klonopin when needed (night before a big day or a travel day). These together have made it very manageable. Hope this is helpful. God bless.
I suffer from time to time with balance issues but it is not MDDS. Im 35 male I thought it may be that but after years I realized it was something different. My best friend growing up was visiting about a year ago and I told him about my issues. He told me he was diagnosed about 3 months after an offshore fishing trip with MDDS. Almost a year later he was still fighting it. He was on valium and meclizene for a while. He said to me Chris this might sound kinda simple but if I sleep every night laying flat on my back trying not to lay on my side and my upper body elevated with lots of pillows I hardly feel any symptoms. But says if he accdentially while sleeping ends up flat laying on his side symptoms come right back. Might be something simple to try. Good luck!
I've had this same condition ,going into year 8 . Mine began after an Osteopaths visit for my Sinisitis ,Im on a FB site for Mdds , they gather info into it ,it's ran by 2 ladies who are knowledgable . Im fine if driving have been since it began , it's standing still ,and often walking,which I don't care to do since its onset . Wouldn't wish this on anyone ever . Who has Sinisitis and Tinnitus ?and Mdds like myself . Never know what we will face any day of the week ,never heard of balance probs until this came to me .
Thanks Chris! I will try this. I’m usually sleeping on my side.
Thanks! I will look into these with my doctor. I’ve been putting off taking medications, hoping the symptoms would dissipate naturally.
Let me know how it goes.
You should see a vestibular physical therapist. They can give you exercises to help. You can also YouTube exercises to help with MsDS and labyrinthitis. I’m going on six months (also 32yr old female) and the exercises are helping. Slowly, but it’s disipating.
Hi rachele
Can i ask how you got the diagnosis and what tests you had done.
I'm waiting for ENT appt so I'm not really sure what I have got but just know it's awful.
I can't stand I feel off balance, vision has become blurr, I feel my legs jammed and tired and weak stiff neck, eyes and head took much of anxiety when I lye still and breath I feel I have I am floating in air and blood is not flowing in my legs and then my legs suddenly feel normal like someone put life in it and becomes tired
I can't stand I feel off balance, vision has become blurr, I feel my legs jammed and tired and weak stiff neck, eyes and head took much of anxiety when I lye still and breath I feel I have I am floating in air and blood is not flowing in my legs and then my legs suddenly feel normal like someone put life in it and becomes tired
hai Chris I hope you still check the reply. I Have vestibular issues that make me feel like I am floating or spinning especially when I’m laying down and have my eyes closed. sometimes i also notice mild spinning sensation around me when I’m laying down. I was diagnosed vestibular neuritis / vestibular migraines. But for a while I did think it was MdDS. As I feel movement when laying down. However, unlike the typical mdds symptom I dont feel internal moving when sitting still or walking. only feeling slight off balance. I only feel the movement when laying down and have my eyes closed. I am so confused. What makes you finally think that you dont have MDDS? what kind of test did you go through to have solid diagnosis?
i have done every test you can imagine. Where do you live? I am in Virginia and was finally accepeted into ear and balance center Dr Shia in Richmond Va. I am on meds and sleep with a mouthgard for TMJ. I feel like a new person. I take klonopin twice a day and I feel great thanks to Dr Shia.
hai Kevin thanks for the reply. Do you have the same symptoms as mine? the floating sensation like u are moving especially when you have your eyes closed? I heard about TMJ as well but i am not sure I Have that as I dont feel pain in my jaw. how long have you been suffering from this ? I am on my 3 months and its driving me insane. Doctor gave me amytriptilin which helps a little especially to help me sleep bcs i feel constant spinning and swaying as I Close my eyes.
I’m just a week in to discovering what on earth is going on with me. I’ve suffered three months of the most severe stress after my husband suffered a very debilitating stroke. I live on an island and he’s hospitalised on mainland so have been travelling on ferry 2 hours a day every day. Normally the boats don’t bother me but since last week I’ve experienced the most odd symptoms of perpetual motion and weird spells of disassociation. its like waves. my feet feel odd if i look down whilst walking I can’t get orientated, like ground moving?. In car I’m fine, in fact I’m most comfortable but outwith sitting it is bizarre?
Have you seen anyone about this? I dealt with it for years 42 m from us.
This site hides replies for some reason it sucks. If you want to text me i might be able to help but my number is 804-543-0652
Dear all,
I come from Holland and am diagnosed with Mdds since may 2019. The symptoms started in nov 2018 with heavy balance problems, fatigue, brain fog, nausea, serious headaches, anxious feelings, skipping heartbeats, etc. I couldn’t walk at first, I had to crawl to the bathroom in the first weeks. I was very very ill. The doctors thought it was due to a virus so I had to deal with it and wait for it to go away eventually while it could take a few months they said. But it did not fade away, sometimes it even get worse for some period of time. The heavy sickness changed into an ongoing less severe feeling of constant motion 24/7. I had to quit my fulltime job. I tried to get back to work for several times but I was blown away due to increasing symptoms. I’m a 37 year old female. Dealing with this extreme bizarre diagnoses for over 2 years already. The only thing that eases the mind a bit is by walking on a flat surface or driving a car or boat, but not too long because the symptoms are getting worse most often after exposure to these activities.
The doctors in the Netherlands do not have any clue what to do with Mdds or how they can treat this. I feel quite alone as nobody understands what I am going trough. Except for my husband, he knows what affect this has on me and the daily life. I do not look ill but there is something unbelievable going on at the inside people can’t imagine how hard and difficult it is to deal with.
We hopefully can be treated in the future! Let’s pray for that. This syndrome is no nonsense!
Wish you all the best.
Maybe we can get in contact to share our thoughts.
Warm regards,
Jenn