managing young onset parkinsons + dystonia

levodopa

levodopa

Member
Joined
Dec 30, 2023
Messages
10
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 😅
 
You must log in or register to reply here.
Drugbuyersguide Shoutbox
  1. P @ psychedpsych: Have good day people, and I hate texting messages lol
  2. B @ bigblueallda: @drjimmy1964 lol I am actually surprised it is a real ID. I needed those documents because my license had been expired for over a year and I had to start all over. Nothing was in the system. It was a huge mess. I had no clue I was signing up for Real ID. They asked me for the exact same documents that I needed for a State ID Card.
  3. S @ soupson: bless your heart buddy. no sense of grammar or proper insults/jokes. you need this place in ways i can’t comprehend
  4. drjimmy1964 @ drjimmy1964: Sweet Ol' Me asked about Real ID, Stoup. Are you responsive to emails ? LMAO
  5. drjimmy1964 @ drjimmy1964: I smell some Stoup. Is Stoup's on ?
  6. drjimmy1964 @ drjimmy1964: @bigblueallda You win. I am lost. Thought you were surprised your license was a Real ID, now you say you provided those items.
  7. drjimmy1964 @ drjimmy1964: @bigblueallda I was under the impression that you'd need all of the points to get a real ID . I'd check it's validity if you're gonna fly domestic any time soon, just to make sure. Not to tell you what to do, sorry -
  8. B @ bigblueallda: @drjimmy1964 In my state to get a Real ID, I need SS card, Birth Certificate and two proofs of residency. Which I am positive I had to provide to get a new ID when it had been expired.
  9. drjimmy1964 @ drjimmy1964: @Turbo259 advertising - putting in writing for example an negative action to show they are guilty prior to taking action.
  10. B @ bigblueallda: I haven't flown in an airplane in 20 years lol. Can't recall the last government building I have been in either. According to the symbol it tells me I should have on my ID to make it a Real ID I do have one in my state
  11. Gracie5 @ Gracie5: Hey @CuCeltic99!
  12. drjimmy1964 @ drjimmy1964: @Turbo259 advertising - putting in writing for example an negative action to show they are guilty prior to taking action.
  13. drjimmy1964 @ drjimmy1964: @bigblueallda are you sure you have a Real ID ? I mean , they really want 6 points of proof and 1 for your addy and 1 for your SSN. Did you maybe get it done and forgot and flew out of the country or something ?
  14. drjimmy1964 @ drjimmy1964: @bigblueallda are you sure you have a Real ID ? I mean , they really want 6 points of proof and 1 for your addy and 1 for your SSN. Did you maybe get it done and forgot and flew out of the country or something ?
  15. S @ soupson: did anyone ask about real id or is sweet ol jimmy just rambling
  16. T @ Turbo259: @drjimmy1964 what did you mean by advertise? not gettin the verbiage, DM works if anything, just didnt understand
  17. B @ bigblueallda: {Visit your local Driver Service Bureau with the necessary documents: original birth certificate, Social Security card, and two proofs of your state's residency. } I definitely provided this when I had to get a new ID when i let mine go expired too long maybe I unknowingly got one but I think it is pretty standard here.
  18. B @ bigblueallda: Well it was a state id renewal. Before that there was a mixup and I had lost my birth certficate and social security number. After a couple of weeks and finally getting several documents in order I was able to get a state ID. It had been expired previously for a little too long and they wanted all kinds of proof. It was a mess. But nah I looked up what to look for an my state's ID to see if it is a Real Id or not and my card as the symbol it is supposed to have. I'll take a closer look though
  19. drjimmy1964 @ drjimmy1964: @bigblueallda are you sure you have a Real ID ? I mean , they really want 6 points of proof and 1 for your addy and 1 for your SSN. Did you maybe get it done and forgot and flew out of the country or something ?
  20. drjimmy1964 @ drjimmy1964: Actually it says "Not For Real ID Purposes". That is my 2022 renewal of my 2018 picture ID. I am not due till 2026 and I am sure they will make me go in since my pic would be 8 years old - they used to make you go in in my state for aging when I was younger, then went paper - then back to picture ( I think 9/11 to blame for that ) but relaxed it.
Back
Top