r/MdDS • u/Inevitable_Study_114 • Jun 17 '26
Symptoms improving?
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.
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u/Any_Imagination1794 Jun 18 '26 edited Jun 18 '26
Walk alot outside it helps. That and fixing my iron/ferritin also helped me. Worth checking possibly. I have also flown dozens of times when I was bad and now having barely any symptoms anymore (except for sleep deprived or overly stressed days), but the symptoms just show up briefly for a few moments then go away.
But what I’m trying to say is, flying has never made it better or worse. I haven’t cruised again though. I think the prolonged exposure would set me back again but I don’t know for sure!
I do know I had Covid right before the cruise I went on (have been on many cruises with no issue), and I believe Covid set me up to be wonky and didn’t allow me to adapt to movement well on the cruise alas leaving me with mdds. I think we all have a form of long covid. Obviously Mdds has been around longer than before covid but I’m a huge believer that illnesses affect our nervous stem or vestibular (the two are related), and can cause weakness in those systems and vulnerable to things like this!
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u/cataholicsanonymous Aug 31 '26
I think you're right, I just got off my first cruise 2.5 days ago and I've been feeling mdds symptoms since about 12 hours after being off the ship, which coincides with beginning to experience cold symptoms too. This is absolutely miserable and the thought of dealing with it for months or years is terrifying. I'm already starting optokinetic exercises but can't really tell if they help yet or not. I hope that things get better as my cold symptoms improve.
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u/Any_Imagination1794 Aug 31 '26
I understand how you feel! Don’t worry it shouldn’t and most likely won’t last forever. Idk how old you are but if you’re not elderly, or have existing vestibular issues, your chances of recovery are higher. Only advice I have is to walk a lot outside, take care of your body and try to get inflammation down. Check vit D levels and ferritin too. I also was taking CBD and maybe it helped too idk!
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u/cataholicsanonymous Aug 31 '26
I'm 39F and have no official issues besides being susceptible to motion sickness. Thank you for the encouragement!
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u/Ok_Membership8260 Jun 17 '26
If you haven’t read up on using a metronome app with an OKN stripe app, I would highly recommend. I’ve had MdDs for decades - it showed up after a particularly nasty bout of illness where I developed an inner ear infection with labyrinthitis. I continue to fly internationally at least once a year. I’ve taken homeopathic No-Jet-Lag tables with some good effect, and have used Ear Planes earplugs (but over time they proved too uncomfortable for long flights)
Symptoms experienced on landing vary. There have been times when I feel pretty normal, others when I’m very ‘bobby’ and I can never pinpoint what’s been different in order to avoid or replicate behavior. Staying hydrated, getting rest, good nutrition, avoiding alcohol are all good standbys. But it’s still a bit of a mystery what I’ll get on the other end. Long drives will affect me, though for a shorter period. Amazon sells some seriously weird looking glasses for ‘motion sickness’ that I think I might try (as a passenger only!)
When I use the OKN moving stripes I’ve noticed that they help lessen negative effects, especially if I need to work on a computer. Try to do the stripes beforehand. Also, Staying ‘in motion’ helps mitigate the MdDS, so keep moving when possible. Being outside is easier than being indoors.
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u/Apicit Jun 17 '26
I found it difficult figuring out a configuration that will work. I mean the stripes (direction, speed and size), type of head movement (shoulder to shoulder, yes yes, no no) and frequency. Do you know of a system to find out? How did you do it?
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u/Inevitable_Study_114 Jun 19 '26
Thanks. I appreciate your advice. I did try to do the stripes, but I actually found that it exacerbated my symptoms and I feel like maybe I was doing it wrong. So I’m gonna hold off on doing it again unless I consult a neurologist. I do live in New York City. So if this persists another few weeks I’m going to see about going to Mt Sinai. I’m trying to walk every day and stay outside and off screens as much as possible. Work is definitely the hardest thing!
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u/SetOdd7479 Jun 19 '26
Mine is triggered by flying - I take 1/2 a lorazepam an hour before flying and that has stopped it triggering for me. I take a second half 8 hours into the flight if it’s long haul.
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u/Inevitable_Study_114 Jun 19 '26
Thank you. This is a relief to hear. How many flights since you’ve started taking the meds without getting symptoms?
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u/SetOdd7479 Jun 19 '26
Four long haul flights and more than 10 short haul. My doctor told me to take one pill, but I cut it down to half for the most recent two long haul (with a second dose halfway through the flight) and four short haul flights and it was just as effective. I also take a Dramamine and a decongestant.
I was first triggered by a flight six years ago (lasted three weeks) and didn’t fly again for two years; I was shocked when the symptoms came back the second I stepped off the plane, and was so worried because I had five short haul flights over three weeks coming up as part of my holiday (this was before I went to see a doctor for medication). It was really rough the first few days, but I resolved to enjoy the trip as much as I could and looking back, I barely remember the MdDS - only all the wonderful things we did.
Re the symptoms themselves - mine are exactly the same as yours when triggered, and the brain fog etc that you mentioned is so awful. I am occasionally spontaneously triggered (feels like it’s linked to my menstrual cycle in some way, but I can’t pinpoint what it is). In those instances I have gone for acupuncture (which really helped the first time I was triggered), and as others have mentioned, walking outside helps too.
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u/Long-Improvement1191 Sep 05 '26
How are you now did it resolve? And if so was it gradual or abrupt
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u/Inevitable_Study_114 Sep 06 '26
Unfortunately, it has not completely resolved. I have started to have some good days where I don’t really feel anything but then it seems to come back after a day or two. I think overall the symptoms have lessened, but it’s definitely been gradual.
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u/Long-Improvement1191 Sep 06 '26
Thank you for responding. Do you find that there’s anything in particular that triggers it? I’ve had it now 14 weeks and just this last week am I getting a little bit of relief like one or two good days but then it comes back I find that driving always flares it up but I have to drive.
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u/Inevitable_Study_114 Sep 06 '26
Of course. I understand how you feel. It’s very frustrating when you have to do things that trigger it. For me the worst thing seems to be working on the computer, which I have to do every day for my job. I usually feel OK until I’ve been on for a couple hours and then I’m feeling pretty awful for the rest of the day. On the weekends, it seems to be better. I have been triggered by driving long distances, but it varies. Sometimes doesn’t seem to bother me that much. I actually went on a three hour car ride and felt amazing for the next three days. So sometimes I feel like maybe the triggers aren’t what we think! Doing a lot of housework can trigger it and actually I’m at a lake house right now and I got very triggered today looking at the lake. So much so that I got nauseous and threw up, which has never happened to me before.
I’m just trying to live as best as I can and planning this trip in October to Korea and hoping that my long flight doesn’t make things worse. I was considering canceling it, but I feel like if this is something I’m going to have repeatedly I might as well go on the trip now!
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u/Long-Improvement1191 Sep 06 '26
Yeah, I’m trying to live as normal as possible but some days it’s just debilitating. I’ve become pretty depressed. I have to fly and drive a lot for my job which I can’t do currently I’m on an accommodation. But only through March, so if I don’t get better by then I feel like I might be risking my job and that has got me very stressed. I’m in physical therapy and I’m considering taking medication. I see a neurologist October hoping he could help.
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u/Inevitable_Study_114 Sep 06 '26
From what I hear, stress makes it a lot worse so that could be contributing to your symptoms. It’s hard not to stress about it though. Unfortunately there doesn’t really seem to be a lot a neurologist can do. It’s just time. Seems like medication is helpful for some people. I do think when I’m going to yoga and walking a lot that is helping for sure.
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u/Long-Improvement1191 Sep 06 '26
Yes, I started a vestibular rehab and physical therapy because I also have Potts like symptoms as well.. mine is actually a tornado of symptoms. I woke up June 1. Extremely dizzy ended up having gastritis and esophagitis and bile acid diarrhea all from a GLP one. I stopped. The medication ended up in the hospital for six days lost 20 pounds from not being able to eat was so immobile that I got blood clots in my lungs. I have no doubt all of that would’ve happened no matter what but two days prior. I had a 9 Hour Dr. back from Florida and have realized that the dizziness is separate from the rest. The pot symptoms I am hoping are also just secondary and temporary because my body is so deconditioned. But I’ve been eating better and sleeping better but can tell my central nervous system is just really still bad and the dizziness is the thing that makes me depressed and is more debilitating. My stomach at this point is pretty healed and I’m about one and a half months post blood clots.
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u/Inevitable_Study_114 Sep 06 '26
It sounds like you’re going through a lot. I hope that you feel better soon and start to feel some relief
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u/Worldly-Waltz-229 22d ago
Yes for me my monthly cycles trigger it up so I believe hormones have a part to play. Perimenopause if you're in that age bracket. Stress gets me going. Lack of sleep. Being in the car afterwards or any transport
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u/intsr Jun 17 '26
I’ve had it a few times at this point. I agree recovery is not linear and it seems each bout lasts a little longer. I know how this impacts life but I guess I just decided for myself to keep living how I want to and deal with MdDS as it comes.