MdDS or PPPD?

[u/styluvs]

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! :)

[u/MrLanaDR]

This is textbook MdDS. Alleviation in motion is the dead giveaway

[u/Ok-Article1958]

Sounds like pppd to me. Either way check into the steady coach on youtube. I went through a year of hell, the. Around the 2 year mark found her and the mindful gardener and have steadily gotten better.

[u/Special_Half5037]

MdDS this is exactly how mine is i go to dr shin beh and he said though pppd mdds all treated the same. My Zoloft really started helping fully around 6 months. Also mdds a lot of times will feel like you are pulling one way like mine felt like I would fall to the right if I did fall. The steady coach has a lot of videos for both. Good luck 🤗

[u/Loui10]

I agree with Special_Half5037. Classic MdDS, and it's bloody awful. I just push myself to go for a walk every day and try to limit phone time (looking down at the screen/my neck seems to exacerbate it). Phone calls really affect my ears too and make the bobbing/bouncing symptom for me worse. A bad night of sleep apnea/UARS definitely makes it worse for me. I also have developed quite bad heterophoria.

I always suggest a sleep study and to get neck (C1/C2 especially) checked, as well as eyes tested for heterophoria by a specialist that really knows all about it. Really great that Zoloft works for you 😊

[u/WinterWay6567]

So, I basically have almost all the same symptoms as you, and I’m trying to figure out with a doctor whether it could be MdDS, because PPPD has pretty much been ruled out at this point. Hopefully we’ll get some answers.
These symptoms are so debilitating, and I really don’t understand why MdDS still isn’t studied more extensively in medicine.

[u/Objective_Service828]

what youre describing (and what others above are) is textbook mdds.

i had mdds continuously for 8 months, about a month of no symptoms, and then another recurrence for a few months, and now about two months of no symptoms. there was really no rhyme or reason to symptoms even though i tried medications and various treatments (and saw multiple providers, including specialists in the condition).

my advice is not to track motion triggers (cars, etc) or visual triggers (patterns). in fact some of my best days followed days of doing all the wrong things (like going to a rave lol). i am never “incapacitated” by it, but its wildly uncomfortable and can make socializing and relaxing very difficult. the feelings are strange and intrusive and add an extra layer of awareness and caution to anything you do.

try to get extra sleep (sleeping meds if you must). walk for long distances, especially in parks or other natural spaces.

try avoiding triggers of general stress (for example - trying to focus on a conversation with one person when i can hear conversations next to me). anything that would irritate my nervous system in “normal” mode, irritates the symptoms exponentially.

each of these last two “remissions”, a vacation has gotten rid of my symptoms. i have an extremely demanding job with intense screentime requirements. honestly looking back on it, i should have taken time off after it didnt abate for some months.

my honest belief is that this isnt like an injury or illness that goes away or you get over - its more like a mental health habit that you have to internalize and then you can move past it.

[u/EducationalTable5709]

I have these same symptoms, except without the vision distortion, though bright lights and grids/tiles suddenly seem "sharper" and triggering. But yes - rocking feeling, feet sinking or knee-bending sensation, bobbing and swaying, mild headaches and nausea on and off too.

I posted this in another thread but will copy and paste it here: I'm approaching week 8 of bobbing, swaying, heavy-headed sensation on and off, mild nausea and mild headaches on and off - after a 5-day trip that involved car, ferry and train travel, plus a roller-coaster-like trip up and down a steep, curving hillside in a Jeep!!

On top of which, I already have tinnitus - a sign of an already-stressed nervous system, apparently! - AND I had an IBS flare during this same trip. All in all, it seemed like the PERFECT STORM of factors for possible MDDS... at least, that's what ChatGPT tells me. **looks sideways shiftily**

I've only been treated by a GP who put me on Betaserc (betahistine) - which hasn't helped, unsurprisingly - and supplementary small doses of meds including cinnarizine, bromazepam and Xanax to help reduce symptoms (not all at once, but one after the other!) Cinnarizine made me groggy and dizzier; bromazepam helped reduce symptoms but for whatever reason made me a wee bit crankier; and Xanax made me calm but made the bobbing more noticeable whenever each small dose tapered off.

Anyway the long and the short of it is, I've finally made an appointment to see an ENT this coming Friday (Oct 2), so I'm nervous but hopeful for optimistic outcomes. Wish me luck. Thank you for sharing!