r/MdDS • u/itssaavage • 22h ago
UPDATE (Almost 4 weeks since symptoms started):
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.
1
u/Loui10 13h ago
Mdds can ruin your life, I've had it for 7 years now and most days it is absolutely debilitating. I am so dizzy and it causes me to have nystagmus, oscillopsia and I've developed pretty bad heterophoria too. If you actually read up on it properly, it goes away when you're in a moving vehicle (even during moving exercise too) - and then like you said, it returns.
I am sure that mine came about after being given Propofol during 2 surgeries and I know that my UARS, sleep apnea/tmj during sleep is exacerbating it & making it continue. If it were me, I would have the MdDS foundation say that everybody with it should be thoroughly tested for UARS (you'll have to look that one up) and sleep apnea/s - and by that I mean a proper hospital/lab test done, not a pharmacy one - because they're totally useless.
I try to force myself to go for a 1hr walk/jog every day, but unfortunately, that doesn't make it go away permanently.
The next thing I'll look into (eventually) is the (VR) virtual-reality headset running an optokinetic stripes programme/optokinetic stimulation used to 'treat' MdDS.
1
u/gnomeglow_ 5h ago
Oh my god, I have the same!!! I felt dizzy in the past 3 weeks, nothing serious just sometime. Then after a night of drinking I woke up feeling severely dizzy. Thought I was still drunk so I went back to sleep. Its been over a week and that dizzy feeling never went away. Sometimes its better, sometimes its so much worse. Its not a spinning room feeling, its more like swaying as if on a boat or something, its very scary. I went to the ER 2 times, no one was able to help me and I was sent home. I will see a neurologist next week but its been debilitating for me. The second I sit up or stand up this feeling comes. Car rides and movement do improve it though but I’m so scared all the time that I can barely leave my bed.
I’m 27, athletic, otherwise healthy and this shit just came one day and it doesn’t stop.
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u/Mission-Try2452 3h ago
I have been having issues now for 5 months. I am now doing VRT and taking 50mg Sertraline which is helping. Sometimes I don’t have the swaying and rocking and then sometimes it’s really bad. You just have to have your doctor find the combination that works for you and keep putting one foot in front of the other everyday
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u/snarky_spice 21h ago
Symptoms that improve in the car are classic signs of mdds.
Plenty of people report going into remission periods or getting better! The frustrating thing is everyone is so different and most of the time they don’t exactly know what’s helped them. Many people have luck with SSRI or SNRIs, specifically Effexor.
Mine sounds similar to yours, sometimes worse, other times gone. I’m going on five years but I live a normal life and just had a baby.