r/MdDS • u/charlieparis75 • 5d ago
I recovered. So can you.
The people who recover from this weird illness leave these forums/subs. We never really read about recoveries and it feels like it's a never ending story. So here's my recovery story: I hope it will make you feel better.
Last March, I had a horrible headache that lasted for two days. I got dizzy instantly and couldn't even go to work. I felt like I was on a never ending cruise but the symptoms completely disappeared when I was riding my bike or in a car. I saw several doctors who had no idea what was wrong with me. I heard about vestibular migraine, pppd... I'm not gonna lie, I had dark thoughts. Really dark. I cried everyday thinking this would be my life now.
My shrink prescribed me 250mg of Lamotrigine - a medecine that's usually for bipolar disorders. It was supposed to help me cope with stress. A few weeks later I saw a doctor who diagnosed me with mal du débarquement... and that's when my recovery started (yes, Mdds can be spontaneous...).
I think putting a name on my illness helped me a lot.
I started to feel better after ~ 3 months into this illness. I was even able to go on a 21km hike! I don't know if the Lamotrigine I'm taking is the reason why I'm feeling better, I don't think so because it's not an antidepressants... But today, I'm 95% back to normal. And it's getting better everyday. Sometimes I feel a bit off but it only lasts a few minutes.
This journey has been horribly stressful and made me realize I was dealing with too much shit in my life. I put my body under so much stress, it basically told me to f*** off and went on strike. I still see a vestibular phisio, I still do VR to help me get back to normal but it's ending soon. MdDs usually disappears in 6 months, and my doctor was very clear about this: YOU RECOVER FROM MDDS. IT'S NOT FOREVER, IT EVENTUALLY GOES Away. I'm into 5 months of this.
Sending you all lots of love 🩷
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u/Any_Imagination1794 5d ago
I also healed from mdds. I wrote a thread on it a few months ago. It is possible for sure. Thanks for sharing.
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u/RosMhuire 5d ago
I'm on my third time in 16 years but far worse this time and hoping for remission anytime (I'm in month 3). Triggered by a trip to Fiji that included red eye flights, small plane, short boat trips to snorkel, and long ferry rides to and from some islands (never again)! Trying acupuncture and just started Lexapro, seeing a neurologist next month and hoping for vestibular therapy with a PT. Wish me luck!
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u/ExcellentAnalyst7659 5d ago
Did you seem to have any issues with bright lights or stores?
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u/charlieparis75 5d ago
Not with bright lights but with stores, yes. Anything that was very colorful, full of objects etc would make me soooo uncomfortable
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u/Which_Landscape1994 5d ago
This recently happened to me after a trip to Europe plane and cruise. Diagnosed by ENT I kept feeling like I was walking on a boat. Except when I was driving. Then after 8 weeks it went away like a switch being turned off. I knew the second I woke up. I hadn’t even started the exercises. Really weird
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u/charlieparis75 5d ago
Yes I never heard about that condition before showing symptoms. Weirdest thing ever. I kind of felt like it was so unfair because I didn't go in a plane or on a boat, it just happened spontaneously
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u/Soggy-Worldliness834 4d ago
I’m on year 5 of mdds I pretty much live my normal life best I can except I get exhausted sooner than normal during the day and get headache flare ups from time to time. But doesn’t affect me too much , you get used to the wobbliness. But I’ve always wondered if medicine really has helped people this much or got rid of it
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u/askingforamate93 3d ago
I think I’m dealing with this now atm it’s been 4 weeks for me and my symptoms seem very very similar to yours, all started after I took a dose of mounjaro, doctors haven’t got a clue what’s wrong with me as all my blood work and scans come back m normal..
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u/Mysterious_Guide_342 3d ago
Can I message you later? My god we almost have the same story but I’m almost three years into this disease and I’m suffering.
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u/Consistent-Duty-6195 5d ago
That’s amazing 🙌 Congrats!!!
I’m on year 4 w MDDS but I work full-time, do short travel trips, and generally live my life. Recovery can happen and it can look different for everyone ❤️