r/MdDS

▲ 7 r/MdDS+1 crossposts

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.

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u/itssaavage — 6 days ago
▲ 3 r/MdDS

3 years of Mdds, work advice

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.

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u/LowNetwork6241 — 11 days ago
▲ 3 r/MdDS

Mal De Debarquement and Vestibular Migraine

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.😖

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u/CookieAlarming997 — 14 days ago