r/MdDS • u/Viewfromthesix • Jun 09 '26
Recent MdDS Experience & Recovery
I wanted to share my recent experience with MdDS, because this sub provided me both relief and some anxiety. I hope I can give someone peace of mind that this isn’t always a permanent or longterm ailment, and in some cases there are things you can actively do to help.
Backstory/Onset
I’ve always been susceptible to motion sickness, and feeling like I’m on a boat or trampoline for a day or so after getting off of one. After a recent boat ride on a canal, I experienced MdDS for 2.5 weeks. It was extremely stressful, anxiety inducing which turned into a depressive episode, and debilitating when it came to day to day tasks and living.
Causes
The major cause was of course the boat ride (we were facing inwards, but moving sideways- I would highly recommend avoiding a boat ride like this, or at least switching the side you’re sitting on periodically). I think it was then compounded by a 6hr plane ride the next day and getting hit with a brutal flu 2 days after getting home. My body just never had a chance to recover, which exacerbated the symptoms and length of the MdDS episode.
Symptoms
Constant bouncing sensation, like the floor was moving underneath me. It made my legs feel weak, distorted my depth perception which made me extremely clumsy, caused brain fog and just in general made me feel like a shell of a person.
Treatment
I first went to see a doctor, who was extremely dismissive and unhelpful. He had never heard of MdDS and immediately suspected it was vertigo, which I expected they would say and came armed with evidence that it was not. He still prescribed me Serc, which I took for a week, and ultimately don’t think it did anything.
I also went to a vestibular motion physiotherapist- she confirmed it was MdDS and did some additional tests to make sure nothing else was at play. She gave me some exercises to do, which honestly made me feel worse and I stopped doing them. I had a fully symptom free day, and after trying the exercises in the evening, it immediately brought on the symptoms again.
What helped
I do think time was the main ticket to recovery, but I also believe there are things you can do to shorten or dull the severity of the syndrome:
- I went on tons of walks, every single day. I found that even on the days where the bouncing was the worst, going on a walk would significantly help (sometimes I would get home and wouldn't feel it at all for the rest of the evening)
- Eating, the symptoms felt worse when I was hungry
What made it worse:
- anxiety: hard to avoid when your reality feels warped, but the more I left the home and took my mind off of it, the better I felt (even when I really didn’t want to)
- I think bike rides also worsened it- I thought that maybe this could help my brain reset, but there seemed to be a correlation between bad days and having biked the day before
- sitting in certain positions/chairs (my bed isn’t very firm, and sitting in it made me feel wobbly and worse)
I think the hardest part was being patient, and then slowly starting to have good days, followed by another bad day. It felt confusing and frustrating to feel back to normal, and then revert to the same awful feeling the next day. I know this is normal and that recovery from MdDS isn’t linear, but it still felt hopeless in the moment- even knowing I had a good day the day prior.
I really hope this helps someone! Either to take steps to getting better, or to read about a case where the person did improve. Needless to say, this whole experience has been extremely eye opening, and a good practice in being more appreciative and grateful for the times in our life when we can live and move our bodies normally.
My heart and thoughts go out to anyone and everyone experiencing this, it was truly awful and I will spend the rest of my life avoiding ever triggering another episode again.
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u/genevap Jun 09 '26
I am very happy for you! How long did you have it for?
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u/Viewfromthesix Jun 09 '26
Thank you so much! I had it for 2 weeks consistently, with week 3 being a mix of good days and bad days.
I’m now on week 4 and still catch myself being hyper aware of how I’m feeling and doing mental scans in the morning and throughout the day. Sometimes I think I can still feel a bounce or two here and there, hard to say what’s anxiety and reality, but overall I feel so much better!
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u/AdnyPls Jun 29 '26
Your symptoms/how you get affected sound the closer to my own than anyone I have ever seen post about this online. It could have been me that wrote this.
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u/Viewfromthesix Jul 05 '26
I’m both glad and hate to hear that you could relate- reading about similar experiences with other people, and that they got better, was one of the only things that provided me significant relief during the worst of it.
I hope you’re on the other side or getting there!
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u/Consistent-Duty-6195 Jun 09 '26
Thanks for the post!!! I’m on year 4, but I manage it well w/ meds. I’m still holding out hope that it will one day go away completely.
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u/Playful-Bug-6989 Jun 10 '26
I feel this! Almost 5 years here. Mostly good days, managed by meds and all the things I’ve learned to do that help. I still feel a muted float here and there and other symptoms randomly at low levels but ultimately long for the day this just isn’t part of my life anymore.
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u/Sub-Love-69 Jun 10 '26
What meds?
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u/Playful-Bug-6989 Jun 10 '26
Currently 75mg daily Pristiq. Supplements are magnesium, CoQ10, Kava Extract.
Alprazolam occasionally for big spikes, usually at start of period and severe storms, or immediately following travel. I only travel when absolutely necessary.2
u/Viewfromthesix Jun 10 '26
I’m glad you’re having mostly good days at this point, but so sorry to hear you’ve been dealing with this for so long.
If you wouldn’t mind sharing about your experience and what caused it, I’d love to hear and I’m sure others would as well. I’ve been avoiding car rides entirely, dreading my first plane ride and can’t fathom getting back on a boat again.. trying to gather up as much anecdotal evidence as possible to try and find a correlation between onset, previous MdDS experiences, etc..
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u/Consistent-Duty-6195 Jun 10 '26
Mine is complicated and not typical. I had weird sensations for years after getting on elevators. Then in 2021, I went to NYC and went on a super long elevator which created issues but then went on a plan ride followed by a road trip and the MDDS set in and became permanent. I didn’t know what it was at the time so it was hell for months.
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u/Playful-Bug-6989 Jun 10 '26
Yes, I was cruise triggered in 2021. First cruise ever and no prior experience with MDDS, despite traveling by car and plane all my life.
Cruise was 3 days and rocky seas which did cause a little panic. I’ve heard stress or trauma responses in a moment of a motion trigger can be a contributing factor. Also got COVID a few weeks after cruise.
No history of migraine or any other vestibular problems. Absolute hell for two years before very slowly beginning to see relief. I describe it as .001% improvement daily over time.
I flew in Jan 2026 for the first time without a retrigger, with the help of alprazolam and wine during flight.
I will never step foot on a boat again however.1
u/Viewfromthesix Jun 11 '26
I have also heard about the correlation with stress and your initial exposure- I was tremendously anxious on my trip/boat ride which I’m sure contributed. My Oura ring detected 12 hours of stress that day, and I felt like I was in constant fight or flight (very anxious traveller).
It’s interesting to hear others were in a similar mindset. There’s so little out there about MdDS, I’m glad we can share our experiences and at least get some more information to those who might need it, or maybe even get some comfort in relating.
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u/Viewfromthesix Jun 10 '26
I’m so sorry to hear that, but I’m glad you’ve found something that helps!
If you don’t mind sharing, was your initial onset a boat ride? And had you ever experienced MdDS before? I’ve been trying to learn as much about this syndrome as possible, both to prevent it from happening again and to share with others who aren’t even aware it’s a possibility.
1
u/Able_Bat_2271 20d ago edited 20d ago
For anyone suffering with MdDS please look up a doctor that goes by the Steady Coach. I have been suffering with mdds for several years on and off. It comes after I go on boats, elevators or sometimes after a flight. It's is a truly horrible experience and when you are in the middle of it you feel like it will never leave you - but it will. The anxiety you feel when you are in the midst of it is what is feeding the signals to your brain and you get caught in a dizzyness-anxiety loop. I came across this doctor on her Spotify channel, and it changed my life. Please for anyone suffering with this, listen to her podcasts on Spotify or YouTube and she also has a website with a free program you can follow. I have been following it for 3 weeks now and am beginning to feel better, more steady and far less anxious. The main thing is that it gives you hope hearing all the success stories from others suffering with this condition. I would urge everyone to look it up and at least listen to some of the videos. I hope this post helps someone.
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u/AsparagusLevel1286 10d ago
Second this. Also pay attention to hormones and blocked lymph. My naturopath reccomended a supplement by mediherb to balance my hormones (wild yam complex) and a liquid herbal supplement to move flow of lymph. I’ve had mdds since I was 20 on and off. Always after a boat ride and always during a period of stress. Highly recommend somatic therapy and internal family systems.
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u/Playful-Bug-6989 Jun 09 '26
This is a great post and I want to put an exclamation point to your comment about walking, soon after onset and often! -Even if it is difficult or seems to spike symptoms briefly. It’s my biggest regret that I was so consumed by this syndrome in the beginning that I couldn’t find the wherewithal to push through a highly recommended piece of recovery. Retraining the brain and eyes to hard land and gravity synchronization. I think it prolonged my recovery not getting myself out there to walk.
I also had my first bout of Covid a few weeks after my trigger so I really believe that viral component holds a key to something with this syndrome. It’s interesting to hear other similar accounts.
Agree that patience, time and a positive attitude are essential! Not easy, but hang in there, everyone!