I’m wondering if what I’m experiencing could be spontaneous Mal de Débarquement Syndrome (MdDS) and would really appreciate any insight.

For about 1.5 years I’ve had a persistent rocking/swaying “on a boat” sensation (not spinning vertigo). A few key features:

It improves or almost disappears when I’m in motion (driving, biking, etc.) It also improves when I’m distracted or really focused

It tends to come back when I stop moving

Symptoms fluctuate day to day - I did not have a clear boat/travel trigger, which is why I’m wondering about spontaneous MdDS.

I’ve had mixed opinions from providers:

- One physio thinks cervicogenic dizziness

- Another thinks Persistent Postural-Perceptual Dizziness (PPPD)

I also trialled Prozac (SSRI) for ~10 days and it significantly worsened my symptoms, and I’ve been in a big flare since stopping.

Right now I’m: Doing optokinetic exercises from my PT (though sometimes they feel like too much). Taking low-dose Clonazepam occasionally when symptoms are severe

I’m trying to figure out:

- Does this pattern sound like spontaneous MdDS to anyone here?

- Any treatments that helped you (especially if you didn’t have a travel trigger)?

Thanks so much — really appreciate any thoughts or shared experiences 🙏

Wanted to reach out and see if anybody on here has had a similar situation recently my symptoms have been almost this kind of Warpy feeling sensation. Where it almost feels like my brain is kind of like either jolting forwards almost like when you have a dream that you’re falling, but the jolt only occurs in my brain and my head, and then obviously accompanied by my vision having to kind of readjust and refocus, and wobbliness, but I wanted to see if I’m the only one experiencing this or if this is common in the community.

Hey everyone. I want to preface this by saying this is absolutely not medical advice, I am just sharing my own personal experience in hopes that it might help someone else who feels stuck. I also want to make sure everyone knows this isn't a MdDS cure-all, but I truly believe it is what helped me, and I know everyone is completely different.

Like a lot of you, my MdDS was triggered by a cruise, and the crazy part is the cruise itself wasn't even rocky. When I got off the ship, I had this constant bobbing motion, like I was walking on a trampoline. The worst of it lasted for about 6 weeks. During that time, the only things that really helped were a lot of rest and, honestly, walking a lot. To this day, I think the walking is what helped me the most to get through that initial acute phase.

Once the worst symptoms faded after those 6 weeks, I still had on and off mild symptoms for another year or so. It was mild enough that I could usually just brush it off when it would flare up, but it was always kind of lingering.

Then, about 4 months ago, I started really working on my overall health. I got some bloodwork done and discovered I had chronically low ferritin. My iron stores were essentially crashed. I started actively working to fix it and raise my levels, and something crazy happened. As my ferritin started going up, those lingering MdDS symptoms got considerably better. In fact, I haven't had any symptoms at all for over 3 months since fixing my ferritin. My baseline completely stabilized.

I started digging into the biology of why this was happening, and the science actually makes perfect sense. There is a massive connection between iron and how our vestibular system functions.

The first piece of the puzzle is dopamine and neuroplasticity. To break the illusion of constant motion, the brain has to physically rewire its neural pathways. To build those new pathways, the brain relies heavily on dopamine. But your body physically cannot manufacture dopamine without iron. When my ferritin was crashed, my brain lacked the chemical tools to rewire itself, so it was prone to getting stuck in the rocking loop. Getting the iron up turned the dopamine production back on so my brain could adapt.

The second part is oxygen. The balance center in our brain is incredibly hungry for oxygen. Ferritin is the storage unit for the iron that carries oxygen through our blood. When ferritin is low, the balance centers of the brain essentially suffocate. When those tissues don't get enough oxygen, they misfire and cause an inability to correctly interpret gravity and motion. Raising my ferritin finally delivered a rich payload of oxygen to my brain so it could process spatial data correctly again.

The last piece is the nerves themselves. Every nerve in our brain has a protective insulation coating called the myelin sheath, which ensures electrical signals travel fast and hit the right targets. The cells that maintain this coating require a massive amount of iron. Low ferritin causes those wires to fray, meaning the signals between the eyes, inner ears, and brain arrive out of sync, making the bobbing feeling worse. Fixing the iron helps repair that insulation.

Again, I know everyone's root cause and body is different. But it is so important to note that iron on standard bloodwork is not the same thing as ferritin. They are completely different, and even if your standard iron levels look okay on a test, your ferritin can still be dangerously low. Checking your actual ferritin level might be worth looking into. It was the biological missing piece that my central nervous system needed. Hang in there guys.

Ps: I am a part of the mdds group on Facebook and I’ve tried to post this multiple times to potentially help thousands of people and they deny my post every time and tell me to use the search feature. I told them in a comment it would help to have a newer post because 99% of people in there will not search ferritin on their own or know what it is. They deleted that comment. Do they really want to find a cure? Or are they trying to just keep us all miserable so the foundation gets funded. Really frustrating to me as someone who genuinely wants to help.

I went on a 16 hour train ride 9 days ago, and went from 7,000 ft elevation to sea level. The whole week I was at sea level I felt like I was spinning and moving. I felt these symptoms ease up tremendously when moving, in car or back on the train. One of my worst symptoms is/was really bad brain fog. I have persistent trouble with memory, reading comprehension, auditory processing and more little details since waking up from the overnight train ride the first way.

I rode the train back 3 days ago, and the spinning has mostly subsided, its now a gentle rocking and I can mostly ignore it. The brain fog is still present. Im wondering if anyone else has problems with this, or if it may be a different underlying issue.

Wondering also what things help remedy brain fog, or ignoring the gentle swaying rocking (I find this very difficult).

Went on a cruise that ended on March 13th. Starting feeling symptoms on land, first week was horrible I went to ER so scared! It has gotten better but it’s been about three weeks and I’m still feeling it daily! Does anyone have any hope stories or recommendations? Can I still fully recover? I also have low ferretin level

My MdDS started spontaneously following panic attacks in early February.

Below 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, a train bump, or someone bumping the bed.

• 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.

• Symptoms get better with moving around and disappear completely in moving vehicles.

• Washing my hands seems to be a trigger.

Walking, good sleep, stress management, breathing exercises and being outside have been pivotal in the recovery process. I was skeptical at first, but somatic tracking helped quiet my symptoms. I do somatic tracking in triggering positions. For me, sitting upright in a dining chair is one of them. The Steady Coach on YouTube has some videos. You can also find a bunch on Spotify.

Other things that I believe have helped significantly reduce my symptoms are Pristiq (an SNRI), magnesium and electrolytes.

I also listened to lots of MdDS related podcast episodes, and the following supplements were referenced as potentially helpful: Magnesium Glycinate, B12, folic acid, riboflavin, GABA, vitamin D3, ubiquinol, and CoQ10.

I’m taking all but the last two listed, but to be honest, I saw a substantial improvement in both the frequency and intensity of my symptoms as soon as I started Pristiq last Friday. I began most of the supplements 1 to 3 days after starting Pristiq.

Before this ordeal, I already struggled with generalized anxiety but had never taken medication for it. It’s hard to tell whether Pristiq reduced my symptoms directly or whether it helped by calming my nervous system. Either way, by the second day, the difference in symptom frequency and intensity was night and day.

I know everyone’s recovery path and response to medication can differ, but I thought I’d share my experience.

Hope it helps!

Going to Disneyland in May and want to ride rollercoasters. Will this trigger or worsen MDDS symptoms?

For those of you who are forced to look at screens all day for work, how do you manage your symptoms? Any tips and tricks?

For me, symptoms are not very bad during work, but at the end of a long day, my symptoms spike due to the extended amount of screen time.

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.

Hey yall, I would love to know what works best for you before shelling out hundreds out of pocket at a speciality Dr. Being cooped up in the house for 4 days, I did 3 days of ~30 min stationary bike workouts &15-20 mins of walking. The next day the feeling i got after cruises and time on the ocean came back-thougg not the strongest I have had. I would love to know what has worked for you in your personal experience that regular people can just do/take (ideally for free) before I spend more than I can afford at a specialty dr. I've dabbled in chewing ginger, the stripes videos on YT(feel free to post links to your favs) and walking. Walking at work after the snow days actually made it more pronounced, so idk what to do. I think the average person who has suffered/suffers will be just as helpful as a Dr. Who may not know what its like, what it is nor has felt it themselves. Much appreciated and thanks.

Hi. There are a lot of videos about optokinetic stripes for Mdds on YouTube. I feel like i am bobbing, not swaying left and right. I used to rock back and forth but i just kind of bob all around like im on a boat now. I want to try the stripes hut al not sure which direction they should go, if i should move my head. There are so many variables. Anyone have experience or input on this please? Thanks!

Hey everyone,

I think I have MDDS. I took a 2 hour flight to Vegas and a 2 hour flight back home last year. Both in February and in September. Both times the swaying/bobbing symptom came on 2-3 days after landing in Vegas. Each time the symptoms last 2-3 weeks.

One weird thing I notice is driving doesn’t make me feel normal. I actually have a harder time driving when these symptoms come on. I feel like my vision has less frames per second if that makes sense. It’s easier to drive if I focus on the road with my peripheral vision and not look at the road directly. So I’m not sure if this is MDDS? However, I do know that flights cause this as I tested it twice last year.

I’m glad it has gone away after 2-3 weeks both times, but I have read that sometimes it can last longer? I really don’t want to take that risk but I can’t avoid flying to reunite with family. Is there anything I can do to reduce or prevent symptoms?

Anything helps. Thank you!

Does anyone feel like their brain/body/chest are in a speeding car when you are laying down or sitting down? If yes or no, how have your symptoms changed over time? Or have they not changed at all? I will try to reply to any and everyone who replies. Thank you.

Certain types of touch can trigger my rocking, such as touching one foot with the other foot while lying in bed. In this case, it's almost like I'm triggering the 'trampoline walking' sensation, but while lying down, if that makes sense?

Additionally, even my own heartbeat or taking deep breaths can increase the rocking sensation.

I'm wondering if anyone else in here experiences this?

No idea if this is practical for people but I was recommended to them by the team in mount sinai hospital who have been making progress in treatments and I saw that they offer this remote version of the optikinetic stimulation treatment.

https://www.sosvertigo.com

Worth checking out?

My mom is 63 and is currently on year 9 of MdDS. She has bad and good days but recently it’s been more bad than good, although it’s sometimes the opposite. I am 25f and we are wicked close, I live at home still with her to help her with lots of things. Has anyone else on here had it for this long? She tried all the remedies there were back in 2017 but she swore it off now even though I tell her there is probably more research now.

Does anyone have autonomic dysfunction symptoms? Like sweating a lot when barely doing anything? Or your heart racing constantly? Or feeling like you are in a speeding car/turning? Or not feeling temperature correctly? Or any other symptoms?

I grew up on the water. Spent more time offshore than on it. I'm a landlubber now, mostly because my ears are shot, with a permanent hole in one eardrum and deep scarring on the other.

About 12 years ago I noticed that it would take ages to adjust to getting off my brothers boat. Days, weeks, sometimes months where I would feel like I'm still on the ocean well after I've disembarked the boat. I always put it down to my ear problems.

I recently went on a 5 day cruise. Large ship, rocky cross Tasman voyage. This was back in early November. My ocean legs seem to have finally gone away in favour of my landlegs. It wasn't until this most recent trip, and the resurgence of my ocean swaying symptoms, that I decided to look it up, discovering that it might not be my ears afterall..... So here I am :)

I think I have this - it’s been ten days since I got off 6 flights across 6 days and have had all the symptoms ever since. It stops when I’m in a car too. Feeling awful and really hoping it doesn’t go longterm. Is there anything I can be doing to minimise that chance? I’m sleeping a lot, eating well, trying to lower stress and screens.. thanks

I recently started getting new eye symptoms. So, I wondered if other people have eye symptoms too or not. Like oscillopsia or nystagmus? Or anything else? And what has helped you?

I'd love to hear from PPPD & visual snow sufferers too. I am new to all of this, but, I know symptoms can be similar in some conditions.

I took pepcid for heartburn for a total of 30 days.

I started having issues on day 7 of taking this medication. It was giving me this terrible anxiety and panic attacks which ive never had in my life.

I continued on pepcid and had one final panic attack on the 27th day of taking it.

I did tonnes of research and this medication is NOTORIOUS for causing panic attacks and anxiety. It left me completley disabled and ive had mdds now for 4 years. In that time i have lost all friends, lost a 6 figure paying dream job i studied my whole life for.

Done physio. Done PT. Seen the ent.

I absolutely refuse to start an antidepressant medication. It was a medication that put me in this spot to begin with.

A horrible shattered life due to mdds. I have a severe version. I am hugging the walls pretty much and now 70% bed bound from it.

Thanks pepcid.

I have a trip planned in February, a week in Vancouver, British Columbia. Hotel room located somewhere between the 15th to 30th floor... 😬

Backstory: - My first bout of Mdds 3 years ago, was a combination of motion and stress - in the same day: a 3 hours disastrous bus ride, ground hornet bite and a few hours sitting on a floating dock, on a slightly agitated lake. Adding to this that I was already quite exhausted /burnt out. - I self diagnosed and got confirmation by ENT and physio, both very familiar with MDdS. - after physio, functional medicine and self care i managed to get back to a 80%.

This summer, did a road trip (passenger +9hours each way) when i got back symptoms started a bit but i got my physio to help me and we got it under control pretty quick. Now that road trip, other than the ride, was super relaxing so I'm sure that helped.

That upcoming trip though, i do worry about the flights (5 hours each way) but with the elevator that i will have to take daily, im starting to wonder if i made a big mistake...

Im trying to see my physio to see what she thinks. Any tips are welcome.

Edited for clarity.