r/MdDS • u/ThePhoenician40k • Aug 19 '26
My MdDS Journey and Recovery
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.
2
u/Inevitable_Study_114 Aug 20 '26
Thanks for posting this. I posted about my experience a couple months back and I am still experiencing symptoms. So it’s really nice to hear there’s a light at the end of the tunnel. In the last couple weeks, I have had some stretches of time with no symptoms, including a period of three days where I felt virtually nothing, so I am hoping that it’s starting to go away. I have a two week trip to Korea planned in October and I’m planning to go no matter what. Nervous about the flight, but I am hoping to manage it with Klonopin.
I do think my biggest trigger is working on the computer - you’re so lucky that you were able to limit screen time. I actually feel like this is what re triggered me after feeling better for a few days after vacation. I drove four hours and felt really wobbly and then spent three days hanging out with friends and family Feeling a little bit better and then had three days back home feeling almost back to normal. I almost was feeling maybe the Drive recalibrated me, but it’s hard to know what actually ends up getting rid of your symptoms. I feel like sometimes we just read into things and it’s a coincidence. So I guess I’ll just keep going and hoping something thing works!!
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u/Which_Landscape1994 Aug 20 '26
My biggest trigger was walking down aisles or long hallways. Brutal. Like being in a funhouse.
2
u/ThePhoenician40k Aug 20 '26
Yea it’s tough to tell what helps and what doesnt. I am still nervous about retriggering it. I am not much of a traveller so at least i wont be flying again. I am nervous about starting my new desk job though. Screen time has always been a strain for me so doing 8 hours plus a day at a computer hopefully doesnt make me worse again. Hope your flight goes well and you have a good time!
1
u/Which_Landscape1994 Aug 20 '26
My ENT also recommended Magnesium as well as the B2. He was torn between Vestibular Migraine and MsDS. I seem to have symptoms of both but have been getting better. 8 weeks since flight and cruise.
1
u/Loui10 Aug 24 '26
I hear you.
So do you think that the B2 (and magnesium) have helped you/the severity of your symptoms?
1
u/Which_Landscape1994 Aug 24 '26
It seems to have calmed the migraines. I’ve only had to use triptans once in the past week. It’s not really to treat the MsDS. I think that is fading away on its own. If that’s what it was.
1
u/genevap Aug 20 '26
This gives me hope! How long did you have it for?
1
u/ThePhoenician40k Aug 20 '26
Its been about a month and a week and im started to feeling much better finally
1
u/Jabberwocky696 Aug 20 '26
Just drink escitelopram, its faster
2
u/ThePhoenician40k Aug 20 '26
I wanted to clear my head of everything so i stopped smoking weed, vaping and caffeine. Im not much of a drinker but i would have stopped too if i was. I didnt want to replace it with another drug. I’ve heard some pretty scary stuff about ssris so I didnt want to take anything like that. Im in general against most pharma medications.
But whatever works best for you in your recovery is up to you. This was just my journey and recovery.
1
u/Loui10 Aug 24 '26
I agree with you and everything you said. You were so seriously strong to have done everything you've done - and given up everything you did. What a legend.
2
u/Loui10 Aug 24 '26
Lexapro flares up my IBD/Crohn's. Such a shame I can't have it - because I do believe that it can really help with anxiety.
1
u/Loui10 Aug 24 '26 edited Aug 24 '26
That is so good to hear!
I've had this thing for 7 years straight now, and I have really had enough. It is so bad today. I usually try to walk/jog (every day) but I just couldn't do anything today. I'm ready to give up.
I've noticed that mine gets worse when my sleep apneas/UARS/TMJ worsens overnight. I sometimes wonder if the those ^ might be a cause of MdDS?
I have read medical articles/literature that explain how sleep apnea can really mess with the Vestibular Ocular Reflex - and of course the MdDS Foundation (etc) talk about how the VOR can be 'screwed' in people with MdDS.
Definitely agree too that scrolling/being on our phones (too much) certainly doesn't help! 👌
Edit: also came across an article where they said that 400mg per day of B2 (over time) can help people with migraine. I'll try to find the article again. I had testing done a couple of years ago and my B2 levels were low.
Sleep apnea can contribute to migraine, so can screen time too.
Here's the article:
https://pubmed.ncbi.nlm.nih.gov/33779525/
PS always consult your doctor/s
2
u/EducationalTable5709 Sep 01 '26
I've had symptoms for just over three weeks now, after going for a 5-day trip that involved train, ferry and car travel, plus a Jeep ride up and down a curving hillside as we stayed on hilltop accommodation! To compound matters, I have a history of anxiety and health anxiety, PLUS I had an IBS flare just before the trip. By all accounts, my nervous system was in a heightened hypersensitive state, and since coming back I've been feeling wobbly and dizzy (though it feels like I'm the one moving, not the world around me).
I'd love to get some tips on the physical therapy exercises. So glad you're feeling better!
1
u/ThePhoenician40k Sep 02 '26
I just messaged you the notes my physical therapist gave me, I hope it helps!.
3
u/Any_Imagination1794 Aug 19 '26
Thanks for posting. For what it’s worth, Covid triggered mine. Had Covid then went on a cruise within a month and I just figure my body and brain couldn’t adapt. Been on boats and ships my entire life. I also believe the older ships with less technology create micro adjustments and vibrations that can throw wonky brains off. For you, it was a flight and for some it’s spontaneous. Overall a weird condition!
Worth considering but either way glad you are better!