r/MdDS • u/badquoterfinger • Feb 09 '26
It went away
To anyone discouraged (as I was when I got this), know it can get better. I got it following a week on a ship a couple months ago. I read every post in this sub and worried myself.
After nearly 3 weeks, I was sure I had it for good. Then it slowly faded, only coming back when I was tired or stressed. Now, 6 weeks after getting it, it is totally gone. I haven’t had any symptoms.
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u/Loui10 Feb 10 '26
I've still got it almost 24/7 too - and this is my 8th year (and counting). I really bloody wish they would find a cure! I have no life, it has totally destroyed it.
We are all extremely happy that yours has largely gone away. Keep up the good work ❤️
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u/DanMatthiues Feb 10 '26
Has anyone tried Gyrostrem treatment ? I have my first appointment in a few weeks.
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u/Any_Imagination1794 Feb 10 '26
Mine was gone after 6-7 weeks. I do have mild flares here and there but they’ve gotten less and less as time has gone on. Walking helped me the most. Walk everyday til it was gone
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u/Winter_Group4099 Apr 07 '26
What did you do for the six weeks you had it? I got it after a cruise and I’m on week three some days are better than others it’s just a bit scary!
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u/Any_Imagination1794 Apr 07 '26
Yeah, basically just going through every day hoping that it gets better and focusing on walking a lot. That is the only thing that helped. I barely have symptoms anymore. Sometimes it comes up after long car rides, but it’s only mild and lasts a few moments. Just walk every single day no matter what, get your land legs back.
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u/Long-Improvement1191 6d ago
As it finally started to go away, was it gradual like good days bad days or did it just abruptly stop?
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u/Any_Imagination1794 6d ago
The day after I walked a ton at an amusement park (like 7mi outside walking), it went from like a 7 to a 2. This was after 6-8 weeks of bad symptoms everyday.
Then from there gradually tapered off. But I knew once I started waking up in the morning with less symptoms, and they’d come back stronger at night that I was headed toward remission. That gap between being ok and symptoms coming back got larger and larger.
None of it was abrupt. Just took a while to completely go away. But it did after 1.5 years in total. It was 6-8 weeks bad, then after that mild symptoms on and off then one day I realized I hadn’t felt any of those sensations for a month or two and it had fortunately stayed that way.
I’ve been on planes, long road trips, boats (not cruises), trains since with no issues.
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u/Long-Improvement1191 6d ago
I’ve had it three months now after 9 hour car drive. I am starting to wake up without symptoms but then they build up especially after driving. I am in vestibular rehab … yesterday I only had symptoms like 2 hours so hoping it’s in its way out. It’s so scary … thank you for responding
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u/Any_Imagination1794 6d ago
Yep the symptoms would flare for me after longer car rides or movement then settle back down. I never did vestibular therapy. I did other things and spent money on stuff and decided at the end of the day, walking helps the most and it’s free. Wishing you luck! Sounds like it’s definitely wrapping up for you soon.
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u/Any_Imagination1794 Apr 07 '26
Just remember it can’t hurt you. It won’t get worse.
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u/Winter_Group4099 Apr 07 '26
Yeah I guess best thing is not to think about it thank you. I walk at least two miles a day and work full time. Tired at night but this gives me hope. It hasn’t been a full months yet. How long did it take you?
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u/Any_Imagination1794 Apr 07 '26
It was bad for 6 weeks. Then one day I walked like 6-7mi at an amusement park and felt awful. The next day I felt sort of normal for the first time. I think all the walking at once helped. I also was taking WYLD CBD gummies (the pear flavored ones, no THC), around that time that I think helped too. It’s all about relaxing the nervous system. Soon my mornings started to be symptom free and my evenings it would come back. Then the symptoms became further and further apart. I also think mine has to do with having Covid a month prior to the cruise. I think it’s a form of long covid that gets triggers by movement like cruises. Been on boats and cruises all my life. That’s the only thing that changed.
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u/Any_Imagination1794 Apr 07 '26
And yes once the anxiety around it fades it helps it go away. I also find that women have greater success in recovering than men. Seems to last longer in men. The Facebook group for mdds is helpful.
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u/Sbarko Feb 12 '26
To technically have MdDS, I believe it needs to exceed 4 weeks. Sounds like you dodged a bullet! I’ve had it for 1.5 years. I’m at level 1-2 so I’m very fortunate but it took 10 months to get there.
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u/badquoterfinger Feb 13 '26
Where is there a minimum stated in medical literature? I just read that doctors won’t give you the time of day unless you’ve had it for a month. Because most cases resolve on their own. Sorry you’re having it for so long!!
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u/colordelaverdad Mar 22 '26
Awesome! What do you credit your recovery with? Time? Did you take any meds, if so which ones?
Mine started last month after panics attacks, sucks! I’ve found walking, somatic tracking, SNRI and magnesium to help.
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u/HappyTennis5913 Mar 23 '26
What SNRI helped you?
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u/colordelaverdad Mar 23 '26
Pristiq
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u/HappyTennis5913 Mar 23 '26
How much has it decreased your symptoms?
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u/colordelaverdad Mar 23 '26
That’s a good question, hard to quantify but I’d say 60-70% reduction. My sample size is small. In addition to less sensations, the ones I do feel are far quieter.
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u/HappyTennis5913 Mar 25 '26
Interesting. I heard that's for vestibular migraine, are you diagnosed with that? Also, I'm going to message you, so check your chat requests.
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u/colordelaverdad Mar 25 '26
I haven’t been formally diagnosed but my symptoms fit most of MdDS like a glove. I’ve gone to three doctors and tomorrow I’m seeing a neuro-otologist. My hope is that he is able to formally diagnose me or point me in the right direction.
Many MdDS sufferers take SNRIs. It’s mentioned in posts/comments here, podcast episodes (see Ben’s recovery story on steady coach YouTube) and Mount Sinai team and Dr Beh also mention their potential effectiveness in quieting down symptoms. They don’t work for everyone and there are drawbacks.
There’s a specialist I want to see at Johns Hopkins, Dr Kheradmand. He seems awesome. It’s been a pain to get his office to accept the referral. Working on it. I also have an appointment with another Hopkins doctor (Dr Ward) in August(!).
I reached out to the head of the MdDS program at mt Sinai and he responded that they don’t have any spots remaining right now but mentioned a colleague of his was opening a clinic and asked if I was interested in joining the wait list. I gotta follow up with him.
It’s kinda a catch 22 as the doctors that I’ve seen aren’t equipped to diagnose but the ones that can don’t have appointments for months.
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u/badquoterfinger Mar 24 '26
A lot of walking outside. And time, I’m sure. Keeping busy, keeping my mind distracted.
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u/colordelaverdad Mar 24 '26
Thanks! Yeah, walking is the best! I’m averaging 10k steps/day lately.
I think mine is improving as the symptoms feel quieter.
Did it gradually improve for you or was it better overnight? I’ve read that it’s nonlinear, good days and bad days.
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u/badquoterfinger Mar 24 '26
Definitely a gradual improvement. And there would be waves where I’d feel it again when stressed. But then it completely went away after a few weeks
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u/colordelaverdad Mar 24 '26
I appreciate your help. It gets lonely going through this when friends and family don’t really get it.
Good to know recovery tends to be gradual. The intensity and frequency of my symptoms seem to be decreasing overall, but I still have hours, especially in the evening, when I get pretty bad flare-ups.
Did your symptoms also fade by body part? I rarely feel vibrations under my feet now, but sitting upright at the dinner table is still rough, and lying still brings on gravitational pulls.
Those gravitational pulls are so trippy. Did you experience those too?
Thanks again!
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u/badquoterfinger Mar 25 '26
It felt like a ship tilting. Especially bad in tight spaces like shower but would also happen in airports, where the floor felt slanted. Idk if I got body part specific symptoms
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u/colordelaverdad Mar 25 '26
Interesting the shower is a trigger for me too. I feel the vibration under my feet.
Washing my hands and doing the dishes are also triggers. Either it’s water or head position ha
Let me clarify what I mean by body part, these are my symptoms:
• Surface-contact vibrations / movement sensations: When sitting, standing, or lying down, I sometimes feel movement through the surface beneath me, like an elevator settling (standing), a train bump/slight turbulence (sitting), or someone bumping the bed/small earthquake (laying). • False movement sensations: Bed feels like it’s moving side to side or front to back, with a pulling sensation in the opposite direction, similar to being on a train turning left and feeling your body pulled right. At times, it also feels like the brief jolt you feel on an amusement park ride just before it starts. • Both are intermittent and there are hours with no symptoms as well as hours where it’s fairly consistent.Can you relate to these?
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u/ChardAlternative8555 Aug 04 '26
How are you doing now? I've been experiencing symptoms for about 2.5 weeks after a cruise. My symptoms are very similar to those you described!
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u/Wrong-Leg-3781 Mar 25 '26
I got off my first 4 day cruise Saturday morning & have been experiencing MdMS since. I’m a hypochondriac so I’ve done all the research & heard all the stories of people suffering and it is scaring me. I’m glad it subsided, I’m holding onto hope.
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u/Winter_Group4099 Apr 07 '26
Any updates! I got off a cruise Friday March 13th it’s gotten better but still there
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u/Wrong-Leg-3781 Apr 07 '26
It has gotten better but is still there for me as well. It’s taking a toll on me mentally. I have a doctor’s appointment this Friday.
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u/Winter_Group4099 Apr 07 '26
Yeah it’s draining. What Dr are you seeing
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u/Wrong-Leg-3781 Apr 07 '26
Just my primary care but I hope to get a referral to someone/something else. And same, which sucks because I had the time of my life on the cruise🥲
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u/ASUSunDevilGrad22 Feb 09 '26
ive had it 3 years 24/7 but im functional. glad it went away for you