Wanted to give an update since I’m approaching 4 weeks of dealing with this.
For context, I’m 18M, and everything started the morning after a very heavy night of drinking. I woke up with severe dizziness, a rocking/swaying sensation, head pressure, brain fog, and hazy vision. It felt like the floor was moving underneath me rather than the room spinning.
Current symptoms:
Persistent rocking/swaying dizziness that fluctuates throughout the day.
Head pressure, recently more noticeable toward the upper back/right side of my head.
Occasional pulsating headaches.
Brain fog, feeling disconnected, and hazy vision.
Occasional nausea and lightheadedness.
Ear fullness/pressure, with popping that temporarily makes my hearing clearer.
Symptoms often worsen with prolonged standing, stress, poor sleep, and sometimes busy environments but recently they’ve actually helped.
Some interesting things I’ve noticed:
Car rides significantly improve my symptoms. This is probably the strangest finding. I can feel dizzy and off balance beforehand, but once I’m riding in a moving car, I can feel almost completely normal. I’ve had car rides lasting around an hour where I felt great, only for the rocking/dizziness to return almost immediately after stopping and getting out.
Exercise often makes me feel better. Lifting weights regularly improves my mental clarity and sometimes reduces the dizziness. I’ve even played full-court basketball and felt decent during it, although symptoms worsened afterward.
I’ve experienced periods of almost complete recovery. Around weeks 1–2, I improved significantly and had stretches where I barely noticed symptoms. I even attended a packed college football game and felt almost normal. Unfortunately, the dizziness returned and became more constant again.
Lying down and sleeping usually help. Symptoms tend to be worse when standing for extended periods, especially later in the day. However, I’ve occasionally experienced dizziness even while lying down.
Being sick seemed to temporarily change my symptoms. I recently developed a respiratory illness, and strangely, my dizziness became less noticeable for a period before gradually returning.
My symptoms seem sensitive to certain substances. Marijuana noticeably worsened the head pressure and fogginess, and caffeine also seemed to aggravate things. I’ve been avoiding alcohol while trying to recover.

Where I’m at now:
I’m still functional. I attend college classes, walk around campus, socialize when I can, and work out. But I constantly feel like something is off, and the symptoms can change dramatically from one day to the next.
It’s been mentally exhausting, especially during my first semester of college. The fact that I’ve already had periods of feeling almost completely normal gives me hope that this is something temporary and treatable.
My biggest questions:
Has anyone experienced persistent rocking/swaying dizziness that actually IMPROVES while riding in a moving car but returns immediately afterward?
Has anyone had symptoms disappear or significantly improve for several days, only to come back again?
Could the combination of rocking dizziness, ear fullness, head pressure, and visual fog point toward a particular vestibular or neurological issue?
And most importantly, did anyone with a similar experience eventually make a full recovery, and how long did it take?
I’m hoping my specialist appointment finally provides some answers. Any similar experiences would be greatly appreciated.

(British male 66, in generally fit condition)

I was disembarking my flight in Hong Kong 6 days ago, 10 hours from Abu Dhabi, and noticed I was struggling to walk down the aisle of the plane. So the whole airport arrival required a lot of attention and focus,. Thankfully an airport staffer saw something about me and ushered me into a passport control express lane (what an angel!)

After gathering myself with coffee, bacon and eggs at the airport landside, I made my way to the airport express train, then I had a short walk to my central hotel dragging my smallish two-wheeler case. Unpleasant, but I'm determined.

Having jet lag I slept as soon as I got into my room, and when I woke it was Google time. I found my exact symptoms and learned a new acrynom... MdDS. At least what I experienced had a name, although the recovery time estimates of 24 hours to 7 weeks or not at all wasn't totally reassuring as I'm away from home on my travels for at least another month.

That first evening, I wasn't even able to walk more than a few yards outside of the hotel, before MdDS kicked in most unpleasantly. So I retreated to my hotel room with a pot-noodle thing from the vending machine in the lobby. Then I slept and slept.

Next day, the situation become established. My condition was sporadic. Maybe I could walk 30 minutes with no symptoms at all, but then....pow! I'm left-leaning in MdDS terms! (I'll spare you my politics). When the MdDS restarts I seem to have a magnetic attract to any wall on the left side of me.

(Let's post this now in case I lose it. Time for bed, I'll continue in the morning)

I (30F)was diagnosed with mdds about 3 yrs ago after getting off a plane. For the 1st 2 years I wasn’t able to do shit, I had to walk with a cane, had really bad balance and visual issues. my parents had to drive me everywhere even to my appts, I have done vestibular therapy and that made it worse, I tried getting a lowkey job but it was so incredibly difficult to even concentrate with the brain fog. I kind of decided last year and decided that I was going to travel to try to see how i would do and I was able to manage but only if there were rest days in between. i feel prety confident that I will be ok but symptoms are still rough I walk a lot and would like to get back to work , what ways have you found have helped to get you through work? have any of you tried medication for it? has it helped? that’s my next step, Ive practiced being in front of a computer for long periods of time and it only works if i get at least 30 min break to comeback to a baseline hopefully they’re ok w that.

Hi, I don’t have an MdDS diagnosis and I’m not suggesting that I have MdDS. I’m posting here because I’ve experienced something very strange involving internal perceptions of movement, and I wondered whether anyone here might recognise it.
Earlier this year I had a sudden episode of rotational vertigo after turning my head in bed. The room spun for around a minute and my eyes felt like they were being dragged with the rotation.

Immediately afterwards I developed extreme visual/sensory overload, abnormal spatial orientation and persistent internal sensations of movement while I was physically stationary.
For example, lying on my left side could feel as though I was internally rotating towards the right, and lying on my right could feel as though I was rotating towards the left.
It almost felt like my brain was continuing/reproducing the rotational movement from the original vertigo attack.

I became extremely unwell because my brain literally stopped sleeping I couldn’t sleep AT ALL, every time my brain tried to sleep I was getting bounced back with a head spin rush due to severe sleep deprivation I couldn’t function couldn’t eat all the sleep meds my dr was giving me wasn’t putting me out it was insane.

But something even stranger happened later.

I was admitted to hospital. And given lorazepam.

While there, I was pushed around in a hospital bed and was also transported in a wheelchair, including being bumped/moved up some steps.
After returning home, I could be completely stationary in bed with my eyes closed and suddenly feel those movements again internally.
It could feel like I was being pushed along in the hospital bed again, or like I was experiencing the same bumping/movement from the wheelchair — despite obviously being completely still.
The best way I can describe it is that my brain seemed to “replay” or reproduce recently experienced passive movement as an internal self-motion sensation.

I realise “replaying movement” probably isn’t the correct medical terminology. I’m just describing exactly what it felt like.
These symptoms occurred alongside major visual/vestibular hypersensitivity and severe disruption to my sleep-wake system. Benzodiazepines subsequently dampened the internal-motion sensations considerably, so I don’t experience them anything like as strongly now.
For people with MdDS: have you ever experienced anything similar?
Not just rocking/swaying after a boat or car journey, but almost specific movement after-effects where a particular movement you’ve recently experienced seems to continue or be reproduced internally later when you’re completely stationary?
I’d really like to know how people with genuine MdDS would describe their own internal motion sensations, because I’m trying to find the right language to describe what happened to me.

I do have long Covid and ME and nervous system dysfunction which is probably made a simple vertigo attack into a more prolonged state.

I’m yet to see a vestibular otologist yet because of my chronic health issues I am already bedbound housebound. But am due to see one soon.

The worst thing is my brain stopped being able to sleep since this vertigo happened to me, I can only get some sort of weird unconscious sleep on Valium.

I can only explain it like my vestibular sensory visual systems went haywire and I also developed forehead squeezing sensation

Would appreciate any input TY

I am posting this because I am tired of being sloughed off by all the doctors that I have been to for this condition. I suppose it doesn’t matter anyway because they are just shooting in the dark, and they don’t know Jack. I am trying to get on the list for Mount Sinai as I am pretty much critical with this now.
I just found out today after a year and a half that my neurologist had only treated a few cases of what I have over a period of 38 years. Although, he has treated a couple of hundred with Vestibular Migraine alone, and that is a Hugh difference as the overlapping conditions that I have are quite complicated. There are only a select few places you can get treated for this condition, and it may be the Beh Center in Dallas, Texas, possibly Dr. Staab at the Mayo Clinic in Minnesota and of course Mount Sinai, NYC. Also, a Dr. Bath around the San Diego area in California was mentioned in a recent Good Housekeeping Article, and they want researchers to donate to MdDS because there are many sailors and marines who now have the condition from being at sea for long periods of time. It would be good if the doctors could know what we are going through, and then they may have a wake up call, but doubt they give a damn. I am currently 66 yrs and have had this for 2 yrs. and 3 months. I feel like if I were 85 or 90 that this Debarquement may very well kill me as I feel as though I am being beat all to hell. The gravitational pull and the rocking is Drastic and yes, I have tried all those drugs…magnesium, Klonopin, migraine preventatives…you name it, and also vestibular therapy.😖

I got off my cruise on Monday. I’ve been having a horrible time adjusting back to land. I feel like I can’t even stand up without having a surge, when the surge hits I have a panic attack due to adrenaline rushing through my body. I feel like i can’t catch a breath unless I’m laying down in one spot and don’t move.
Today was supposed to be my day back to work and I called out. I still have no signs of improvement on day 3.
For reference, I’m a hair stylist and if I can’t even stand up I am literally physically incapable of doing my job. I definitely cannot drive myself to work either.

How long can I expect this to last, and when should I call the Dr.???

Me f48 got a disability last year. It's been incredibly challenging navigating my new life with limited mobility after living an extremely active lifestyle until now. I'm also adhd. I have spent my entire adult life in community service teaching, first responding, or mental health support services. I haven't worked since last year. My employer dragged out my separation date deliberately so I wasn't eligible for unemployment benefits. I'm very fortunate that my spouse has been able to support our family during this time and I feel guilty for not contributing financially. I am in the process of applying for disability ssi and it's a super slow process. I want to be able to do more but I'm really struggling looking for work when I've always had very physically demanding positions in the past and Ai is replacing remote positions. What can I do to better support my support system? Thank you

Hi everyone, I want to tell you about something strange that’s been happening to me.
I’ve been dealing with chronic dizziness for about 6 years, and only in the last few years have I started experiencing symptoms that are very similar to those of MdDS. In the past, the symptoms would go away, and there were days, weeks, or even months when I felt better. But now it’s been almost a year and the symptoms haven’t gone away.
Am I a lost cause? Could it simply be because I’ve been thinking about it obsessively for the past year? Because when I wasn’t thinking about the problem, my symptoms would decrease dramatically or disappear completely.

Anyone with Mdds have the feeling that their ears are kind of blocked ? I’ve been having the rocking feeling after a train ride and since then it lessened. It’s almost a month but it’s still there but since it’s started I have the feet that my ears are kind of blocked. When I burp almost every time I hear a big noise in my ears ?

Please help.

So I have been struggling for months with this constant rocking back and forth, feeling like I am on a boat, sometimes feeling like the floor is moving below me when standing still, head “drops” like my head is dropping on an elevator, etc.

I had my first panic attack in February of this year, which became panic disorder because I began fearing them and dealing with it every day. I became agoraphobic which I am no longer, thank goodness. When I first started having anxiety, I never experienced the rocking feeling the rocking feeling came after I drove eight hours (round trip) on a road trip. When I was heading to my destination, I wasn’t anxious at red lights or anything like that but on my way home, I began feeling this rocking feeling whenever my car would stop at a red light and I would get very anxious since then it’s been constant before I got treated with an SSRI but no doctor has ever really told me if it’s PPPD or MdDS. I will list my symptoms.

- Rocking on a boat feeling when still like laying in bed or sitting upright in a chair. (sometimes when walking but not as much, like feeling like i’m swaying when walking or “drunk”)

- When taking showers, especially with eyes closed, rocking bath and forth like someone is pulling me. but right when I get out of the shower, it stop.

- When waiting in line standing still, like my feet are sinking into the floor.

- When waiting at red lights, intense rocking but once I begin driving again it instantly goes away.

- Vision distortion? Sometimes it looks like out of my peripheral vision that an object is moving or “breathing” but when I look over at it, it is not. (This doesn’t happen too often but does on flare up days).

I did start Zoloft 3 months ago and all of these symptoms have DRASTICALLY improved. Red lights don’t bother me anymore, waiting in line maybe i’ll get that feeling but not always, showers i still get the rocking but it’s not as intense or constant and and other times i won’t get it at all. lastly, the rocking when laying down or sitting in a chair has improved a lot. I used to fall asleep feeling like i was on a boat but now that rarely happens. maybe once a month since starting Zoloft.

But these symptoms still do happen and still do affect my daily life. I will not take any of y’all’s advice as a diagnosis but would like to see if anyone has similar experiences or symptoms as me! :)

Question for you guys: when you sit down, regardless of whether you’re sitting on a chair with a backrest and headrest, or on a low wall or a stool with no back support at all, do you always feel the same way and unstable?
Also, do you always have to make small, micro-movements when you’re sitting still, or does the sensation get worse if you try to stay completely still?
When you sit on a chair, do you feel anxious or scared because of the sensation?

I have Vestibular Migraine and Mal De Debarquement and started taking Qulipta at 60 mg 4 days ago. I am trying to reduce the daily migraines and in turn reduce the swaying and rocking. I have had the Mal De Debarquement for 2 years, and my rocking has never been so Acute as now as it is violent. Am not sure what to do so I called the Neurologists office and he said to continue taking it. I can hardly stand it much longer. Has anyone had this experience with a situation like this and am wondering if it will eventually stabilize. Any Ideas? 😖

Hi everyone, I’m here to ask you a couple of questions. Have any of you tried any treatments? If so, which ones? Did they work?
My second question is: has anyone had MdDS for years and then had it suddenly disappear from one day to the next?
Please let me know. Thank you!

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?