managing young onset parkinsons + dystonia

levodopa

levodopa

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Joined
Dec 30, 2023
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shot in the dark, but does anyone have any tips on self-managing young onset parkinsons? primarily the rigidity and dystonia. the other symptoms are nothing in comparison to how bad the dystonia gets, and it’s in almost every part of my body at this point. i can’t function

i’m currently on carb/levo 25:100 x4day, PRN propranolol and 300mg of pregabalin at night (this one i am currently trying to taper off of). i get Botox every 3 months. i have a set of daily stretches/weight lifting exercises and hike 2-4miles x5-6 days a week but this is what i dedicate most of not all of my functionality to

have tried a variety of meds, for some reason even though muscle relaxants work for me, i get intensely disoriented on them (like, can’t remember the words i just read, feeling shitfaced drunk disoriented. i think potentially an interaction with my pregabalin), so not an option right now. orphenadrine and baclofen have worked the best though. honestly, orphenadrine was great at relieving the dystonia and i want to try again with it after i taper off lyrica

ativan worked great but ran out of that a long time ago. gabapentin worked fine for me. vyvanse helps in a pinch but makes my autonomic symptoms horrible for 2-3 days after. mucuna also was too much for my autonomics :-/

otherwise have tried most SSRIs you could name, a couple tricyclics, ropinirole, magnesium/potassium/sodium supps and primidone with no success. i am a bit intimidated by dopamine agonists because of how much ropark tanked my BP and carblevo seems to work well for me. always notice a stark contrast in symptoms after taking a dose, i just need some help knowing what combos of meds won’t make me too groggy or hypotensive to function, but will still nip the dystonia in the bud.

i’m thinking — increase carblevo to a tab and a half x4/day, taper off lyrica and try restarting orphenadrine? any other tips would be highly appreciated. very overwhelmed with this all 😅
 
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