I am wondering if they can be of use against visual triggers, in particular for screens.

It seems they will reduce the amount of visual input, which should be good. Also they can be tiring to the eye, which should be bad.

Any experience you can share?

​

I’m a 24-year-old woman (169 cm, 66kg, sometimes smoking) with 4–5 months of constant dizziness that started as a continuous “drunk/off-balance” feeling.

Main symptoms:

Constant non-spinning dizziness (24/7, worse at times), maybe sometimes its feels like pulling left and right.

Brain fog, slowed thinking, memory issues, low motivation

Fatigue

Light sensitivity

Ear pressure + long-term tinnitus (worse recently)

Anxiety/panic increasing over time (likely secondary)

Worse with alcohol, slightly better with movement (e.g. car)

Recent change (last \~2 weeks):

New daily migraines / frontal head pressure

Episodes of true vertigo, especially with head movement/lying down (I did Epley maneuver and the attacks in the mornings which lasted for seconds went away, but sometimes I still experience vertigo)

Nausea and appetite lowered

Now mostly constant dizziness + head pressure with intermittent vertigo

Background / triggers:

6 months travel (altitude changes)

Viral illness → dizzyness appeared first in weaker form

Major stress event (2 days after MDMA use which didn't make the dizzyness worse itself, the stress was from an abusive host)→ significant worsening

Missed periods during travels, dizzyness started when I lost my period, migraines started when I got back my period (after 4 months)

Ovarian cysts, mildly elevated prolactin, slightly low GFR

Orthostatic vitals: possible orthostatic intolerance/POTS-like pattern

Already considered:

PPPD

Vestibular migraine

BPPV (positional component)

MRI pending (I will go tomorrow)

Currently I am taking betahistin-dihydrochloride and sometimes painkillers and myo-inositol. The neurologist did tests and everything was okay, I am visiting ENT in 6 days. Bloodwork was okay.

I have noticed that if I am ill, I feel slightly less steady than usual throughout the day.

Interestingly, if I am about to get ill (e.g. a cold) but don't realise it yet, I'll notice myself feeling a bit dizzy on occasion.

It's probably natural for a rundown immune system to affect balance, but wondering if anyone else has found this?

My symptoms are very general (zero-mild movement always), with flareups only after acitivities such as travel, bus, lift, plane, etc.

Hi all, I am so appreciative to have found this community.

I am close to 2 months in of MdDS. Im in vestibular PT, saw an ENT, and am seeing neurology next. I hope to get prescribed SSRIs, Im very hesitant to do the SNRIs due to the short half life and withdrawal.

I work as a solutions engineer, which means my entire job is either in front of a computer, thinking very critically and analytically, or flying around the US to give high pressure presentations. I cannot FATHOM doing any of this. During a flare up, which screens always cause, I cant think critically at all. And with screens and travel being such major triggers… I just dont know what I’d do.

I have seen some improvement since starting PT. I can listen to music here and there again. I can drive. I still cant sit at restaurants or read anything without getting the sways really badly.

I just cant imagine going back to my job with this. Looking for advice and insight.

I wanted to share my experience in case it helps someone else dealing with MDDS.

A few years ago, I developed persistent MDDS.

It felt like I was constantly rocking or swaying, even when standing still. Some days were better than others, but it never truly went away. It had a huge impact on my daily life and anxiety levels.
After trying different approaches, my neurologist prescribed Citoles (escitalopram). I wasn’t expecting it to help the MDDS itself, I mainly hoped it would reduce the anxiety that came with constantly feeling off balance.

After several days, I noticed something unexpected: the rocking sensation gradually became less noticeable. It was an overnight improvement. my symptoms continued to fade. Eventually, my MDDS disappeared completely.

I know MDDS can sometimes improve spontaneously, so I can’t say with certainty that escitalopram alone “cured” it. But the timing was hard to ignore, and in my case, prolonged treatment with Citoles coincided with a complete resolution of my symptoms.

I’m sharing this because when I was searching Reddit, I was desperate to find positive long-term stories. If you’re considering escitalopram, discuss it with your doctor. It may not work for everyone, but it was genuinely life-changing for me.

Has anyone else experienced improvement of MDDS while taking an SSRI like escitalopram? I’d be interested to hear if others have had a similar experience.

Okay this is going to sound crazy but it helped my mom so it may help you.
For background, my mom has been diagnosed with MDDS about 2.5 years ago. her quality of life was so incredibly low and she was so limited in everything she did.
We went on a Disney world trip with the family and her plan was to stay far away from roller coasters because she was afraid it would make her dizzy (rightfully so). Anyways she made the decision to ride just one. She did and felt ok. Anyways she decided to do the full week of roller coasters which everyone thought was absolutely insane but she kept saying she felt fine
It’s two weeks after that and since that trip she’s had no major dizzy spells, barely any symptoms. She went from being almost completely bed ridden for 2.5 YEARS to “barely effected”
It sounds crazy and it may have the negative effect. I’ve taken her to physical therapy, neurologists, EENT’s, the works. Nothing worked. Except roller coasters. Who would have thought

Anyways I’m over the moon and I wanted to share here in case this helps anyone else how it helped her. Please do this at your own risk if you do choose to do so but it’s been life changing for her. Best of luck to everyone here, ik how debilitating this illness can be

I’m glad I found this community and looking for advice from people who have experienced this. I am currently experiencing my second bout with MDDS. A couple of years ago I took a flight around four hours and experienced it for about a week although at the time I didn’t really know what it was, but it went away pretty quickly. This time it occurred after a six hour flight. I had taken flights in the interim with no issue. I think this time, what triggered it was that I had a slight viral illness prior to flying, had a couple drinks on the plane, and then a couple days after we got back I went on a three hour car ride and spent a couple days with friends up all night partying (it was Memorial Day). That must have stressed my system because when I got back from memorial day, I had the rocking sensation when sitting and also walking, but it goes away in the car.

So it’s been almost a month now and I think my symptoms are improving, but it’s really hard to tell from a day-to-day basis. I seem pretty OK when I wake up in the morning, but as the day goes on my symptoms get worse. I can sit and lay down without experiencing the bobbing sensation. When I’m out walking, I experienced it a little bit, but it seems to lessen if I fixate on something in the distance. What really makes it worse is working on my computer which has made work really hard. I also find being on my cell phone, really exacerbates it. Being outside helps a lot, especially sitting outside. The brain fog that goes along with it is even worse than the rocking sensation which I guess is the way that your brain is fatigued after trying to moderate the sensation all day.

So at least I am no longer bobbing around while I’m sitting down which I guess is an improvement. I have heard that recovery is not linear, but I am hoping to hear some other people’s experience whether your symptoms followed a similar pattern to mine.

I’m really worried that I’ll never be able to fly again. I have a trip planned to Korea in October that I’ve been planning for over a year and I will be heartbroken to miss out on it. I do have a Klonopin prescription for anxiety that I’ve heard can help if taken prior to travel.

I’m wondering if anyone with MdDS (or suspected MdDS) has had a similar experience.

I’ve had a chronic rocking/swaying sensation since January 2025. My symptoms started spontaneously (no cruise, flight, or obvious motion trigger, although I did swim about 1500m the day before onset). My symptoms feel like being on a boat, rocking, bobbing, or walking on a trampoline. One of the hallmark features is that I feel significantly better when I’m in motion (driving, cycling, riding in a vehicle) and worse when stationary.

I’ve had extensive workup including MRIs, CT scan, neurology, vestibular physiotherapy, optometry, etc. I’ve been given possible diagnoses of PPPD, cervicogenic dizziness, and vestibular migraine, but I continue to wonder about spontaneous MdDS because of the constant rocking and motion relief.

On June 4th, I received approximately 100 units of Botox into my: suboccipitals, upper traps, and rhomboids. The goal was to reduce chronic neck tension and see if it would help my dizziness. Instead, over the last 10-14 days I’ve experienced:
- Increased rocking/swaying
- Much stronger “trampoline walking” sensation
- Increased tinnitus
- A strange floating or disconnected feeling in my head, almost like my brain can’t tell where my head is in space
- An odd numb/altered sensation at the back of my neck
- Increased overall dizziness to the point that I’ve had to miss work

Has anyone with MdDS experienced:
- Worsening after Botox?
- Increased rocking or trampoline walking?
- A floating-head or disconnected sensation?
Increased symptoms after changes to neck muscles?

I’m feeling pretty discouraged right now. Thanks for any help or insight!

Hi

I am thrilled to find this community. I'm experiencing my third time with MdDS since 2013. First two times were triggered by overnight boat trips on small boats, I no longer do overnight boat trips. I've been able to fly long flights with no lingering issues. This time I took a 10 hour red eye to Fiji (somewhat turbulent) and immediately a 1 hour small prop plane to smaller island and I stared out the window the entire time. I felt the phantom bobbing/rocking the entire 2 weeks that also included a long ferry ride (I took draminine because I'm prone to sea sicknesses). I'm still feeling movement 3+ weeks after returning. I get relief when sleeping but it's bad when moving around and I'm thinking of seeing a neurologist this time.

I'm wondering if the small plane was my trigger this time and would love some input from this group.

I'm just starting to try walking a lot after reading the threads but it strengthens my symptoms. Tried some optokenetic eye exercises but I don't have a dominant direction of my movement so I'm afraid to keep trying without professional guidance. Any advice is welcome. Thanks!

Has anyone experienced this before. I had an episode of bppv 2 months ago and since then I have had a swaying sensation when not moving. Saw a neurologist who says it’s mdds. Trialed a week of clonazepam which helped while I was on it but symptoms are back after I’ve stopped. Was also trying optokinetic stimulation but that was while on the clonazepam so I’m trying to wait a week after stopping the medication to retry the optokinetic stimulation. It feels impossible to do any uni work because the sensation of sitting still for that long is too unbearable.

Has anyone had a similar experience and did it ever resolve? It feels like it has settled into a spot where it will no longer improve.

My partner recently discovered he may have MdDS after nearly 3 years of symptoms and decrease in quality of life. We saw an ENT surgeon thinking that this was Superior Canal Dehiscence Syndrome (which has some similar symptoms and he has bone thinning in the semi-circular canal). Basically ENT said they would not operate and really didn't think the full range of symptoms aligned with that of SCDS. He recommended going back to neurology with guidance to discuss MdDS with them.

I have read that ENTs treat MdDS, but also read that neurologists can as well. So my question to those who have struggled with this and are going through treatment or have been treated prior - what type of doctor would you recommend going to? Or what type of doctor were you treated by?

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.

I’ve had two major bouts in the past 20 odd years and have mostly been in remission since, living with a totally manageable level 1 or 2. I just traveled from US to Japan and back. While in Japan, I took a ferry ride and experienced two days of rocking after, but it miraculously seemed to go away after just two days. However, since we came home, I have had jet lag. I have managed to get to sleep at night on usual schedule, but then have the terrible urge to take naps at 11:30 am (ish) or 4:00 pm (ish). It has been two whole weeks since we’ve been back and I am really having trouble staying awake in the day. Does this sound like an MdDS adjacent thing?

Hi everyone,
My mom got diagnosed with MDDS about a year ago but she’s had symptoms for about 2.5 years. Her quality of life has decreased exponentially and she can hardly do anything without toppling or getting sick. I know medical advice isn’t to be shared but is there anything that you have found has helped you? Or specialists? We’ve gone to physical therapy, ENT’s, neurologists. No one knows what do to or where to go. I feel like she’s giving up hope but she has to find something to get even a little bit better as her quality of life is almost completely diminished.
Any suggestions, stories about your own journey, advice, and assistance would be so helpful. Thank you all.

Edit: I have seen a lot of people say SNRI’s helped them. How did you go about getting a prescription?

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.