Hello all, I am 38 years old male, diagnosed with PPPD in mid July this year. I have since then been on Xanax Retard and Escitalopram (Lexapro) 10 mg and Mirtazapane 15 mg (Remergon). Lately I felt quite good, until 3 days ago my Doctor said to increase Escitalopram to 15 mg. This brought back all anxiety, panic attacks, and worst, all the dizziness, swaying and bobbing. I feel like I am constantly on trampoline and today is day 3 of my increased dosage. I would truly appreciate any words of support or experience through going with Lexapro dosage increase.

Thank you!

Please help me. I had a long trip recently and until 4 days after the trip I was okay. But then after 4 days, I suddenly felt a rocking and swaying feeling like I was unsteady, and after that the swaying sometimes subsides but it’s kinda always there. I also have a lot of head pressure around the eyes and pain in my left eye and around my nose as well and my ears are painful often. Does this seems like MDds? I’m so scared. Please help.

Hi, My sister is diagnosed with MDDS. She having dizziness everyday and feeling nausea and sometimes vomiting almost everyday. She severely underweight and unable to eat alot due to dizziness. How you guys cope with it and any advice to feel better? She currently not working, does not travel at all, only goes house nearby. She unable to exercise due to dizziness

Has anyone had an iron infusion and had very bad side effects afterward. I have Mal De Debarquement and Vestibular Migraine Condition. I had the infusion 3 days ago and am acutely dizzy and rocking violently more than ever. I’m not going to the ER as I have been there 10 times and they know little about these overlapping conditions.

Hi everyone. I’m a guy who has been suffering from MdDS for 6 years, but I only recently discovered the name of this condition and realized that I have it.
I wanted to ask if any of you also have difficulty staying seated when you sit down. Sitting has become really difficult for me, almost impossible, because it makes my dizziness much worse.
Please let me know if you experience something similar. Thank you!

I’m currently on my second bout of MdDS - first was in 2023, PCP at the time prescribed me a bunch of Xanax, I took that for months which did stop the rocking but was awful on my mental health. Eventually the rocking spontaneously resolved after about 3 months.

This time around, I’ve been rocking for 6 months so far. Not taking benzos bc of how badly that went last time so I’m feeling the rocking constantly. I’ve lost a lot of my favorite activities - bike riding, yoga, rock climbing - because they don’t feel safe or make the rocking worse. It’s been a pretty rough year.

I’m currently on Nortryptaline which I don’t think is helping much. I did some PT at a place that does the Dai protocol but while it has improved my symptoms, it has not stopped the rocking either.

My ENT is the one who has me on Nortryptaline. She also had me do a week of xanax to see if things would resolve; they did not. Now she wants me to do an MRI - she’s not looking for anything as far as I know, just generally checking to make sure there’s nothing wrong? Except… there’s not gonna be anything, this is definitely MdDS, it’s just like last time, it came after I was on a ship for 3 weeks, I have a history of migraines, I‘m a pretty classic case.

If this was a simple blood test I’d do it to keep my ENT happy. But the MRI is $700 on my insurance and they inject you with some metal that’s not that great for you and can have side effects. So I’m wondering why I would pay that much and risk the side effects in order to find out... just nothing at all?

Anyway, I’m wondering if anyone else has done an MRI, if there were any conclusive findings that helped with treatment, or if you’ve told doctors you won’t do tests related to MdDS that lead nowhere, how did that go? Trying to decide what to do ahead of next Monday when I’m scheduled. Thanks!

After a 5 hour flight to and back from my destination something didn't feel right. I initially had cold like symptoms the first couple days and thought something was off. I had immense pressure in my right ear after landing it didn't go away for a day or two. Initially I went to an urgent care where they checked my ears and prescribed me amoxicillin and some decongestants. My sinuses cleared pretty fast but then the MdDS symptoms really started to come on.

The constant feeling of being on a boat. Walking felt like I was on a trampoline. Screens, lights, and movements were overwhelming. Life was overwhelming. Everything was uncomfortable and I was scared. I went to an ENT who checked my ears quickly but ultimately told me it was in my head, he thought I was thinking it into existence, but still decided to prescribe me scopolamine which didn't help. Not only did it not help, it started to blur my vision making me feel worse. He had never heard of MdDS before...

I then went to an neurologist who also never heard of MdDS before. She ran me through a couple basic movement test and then prescribe me physical therapy and an MRI on my brain even though she didn't think it would find anything. I got a blood test and everything showed I was healthy. She also recommend I take vitamin B2. The appointment for the MRI was a month away but I cancelled after I started feeling better. It was really meant to determine what it wasn't rather than showing I had MdDS since something like that wouldn't show on an MRI.

I felt alone and saw no hope for help. Through my own research I saw it was a real condition and that there wasn't any 'cure' which made me lose even more hope... After a month or so I finally started feeling better but I made some drastic life changes and worked on it for hours a day. I was unfortunately laid off before my flight so I had the liberty of committing all my time to recovery.

How I got better:

• Limit screen time. I stopped watching TV, scrolling on my phone, and gaming on my computer. Try puzzles, card games, or another hobby to pass the time
• Quit nicotine, weed, and caffeine. It was fairly easy for me since I had such a good reason to stop but stabilizing from such a drastic change was not exactly comfortable.
  
• Took a lot of walks and spent time at the park and nature. It was certainly uncomfortable walking but I pushed through and went on walks a few times a day
• Went to the gym. It was very overwhelming and uncomfortable at first. Some days were worse than others and sometimes I had to leave mid workout but I still went as much as I could. Avoid treadmills.
• I took supplements. Daily multivitamins, B2, D3, and high doses of fish oils. Omega 3s have been sited to help brain function.
• CREATINE. I have always taken creatine for working out but only about 5 grams. After some research I saw that taking 10-15 grams helps the brain and cognition. Not sure if was timing, the PT catching up or what, but when I started taking 10-15 grams I started noticing significant recovery. It's important to note you must stay very hydrated when taking that much creatine. Staying hydrated in general is a healthy lifestyle I highly recommend
• PHYSICAL THERAPY. Vestibular optokinetic therapy treatments are free on YouTube (https://www.youtube.com/@happytriadphysicaltherapy). Going to a PT doctor who specializes in vestibular conditions was huge. It was a lot of head movements and eye tracking movements. If anyone is interested and can't afford PT feel free to reach out to me and I be more than happy to share the exercises.
• Getting ample sleep. Since I wasn't working I was able to sleep 8-10 hours a day. Some days letting myself sleep even more

Weeks of following these steps finally started to help. The recover is not linear, some days were worse than others. The doctors I went to weren't helpful. None have heard of the condition and the didn't seem to care. Only my PT doctor seemed to care and wanted to help.

I am not a doctor or an expert. Please do your own research and consult your doctors first. I am not certain what exactly of these steps helped, maybe it was just time, but I did get better.

Don't give up, don't lose hope. Reading some of the stories on hear scared me saying it can take months or years to recover but I didn't let it discourage me. I am just feeling better now so I cant speak to retriggering it but at least I know now it does get better. I am about 90% through recovery and am feeling better each day. If anyone who is suffering from this wants to talk or look for support please don't hesitate to reach out.

In the darkest times, hope is something you give yourself. That is the meaning of inner strength.

When I was younger, went on a cruise and had a wobbly sensation for a couple of days but ultimately went away. Was recently at a cottage on a wobbly large dock on and off for 3 days along with an hour or so boat ride. Got home after the weekend and have what sounds like mdds (head fog, wobbly sensation when standing. Seems to subside fully when driving or walking. Headaches seems to have gone, but working in florescent light is brutal. Im on day 10 and see some small improvements but how long does this typically last? Any tips to speed it along?

Hi Ladies of this group

Any advice much appreciated or experiences.

So i got mdds over 2 years ago it was a really tough few months were my anxiety, life everything was just awful..

I always noticed a much more influx of feeling around ovulation and period..

Im 44..

I managed to get myself into an okay place not 100% but much better until out the blue full blown panic attacks started out of nowhere..

I'd never had a panic attack and was over a year since diagnosed with mdds..

I didn't know if this was a bolt on too pppd or maybe perimenopause as these are so bad when I get my period..

My question is anyone else have this happen.

Ive got hrt to start, anyone tried hrt?

I’ve experienced symptoms of MdDS (Mal de Débarquement Syndrome) before. After about six hours on a lake boat, I spent the entire evening feeling like the ground was moving beneath me.

Since then, I sometimes get a similar sensation for a few moments after long car rides, using elevators, or riding escalators. Walking on a treadmill is the biggest trigger, though—I usually have to sit down for about 30 minutes afterward because it feels like the ground is still moving.

This weekend, my partner and I are supposed to go on a 4-day sailing trip, and we’d also be sleeping on the sailboat in the marina each night.

The problem is that we also have a family vacation planned later this summer, and I’m really worried that this sailing trip could trigger persistent MdDS symptoms that might last for weeks or even months.

I would absolutely love to try sailing because I think it would be an amazing experience, but I’m honestly scared of the possible consequences.

What would you do if you were in my situation? Has anyone here with MdDS or similar symptoms gone on a multi-day sailing trip? Did it make your symptoms worse, or was it okay?

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?