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    • #15363
      Jean Mellano
      Keymaster

      Do you experience Dyskinesia?  Do you feel it is a side effect of your medication or a symptom of PD?

    • #15513
      Claudio
      Participant

      As far as I know, dyskinesia is a side effect of over dosage of levodopa, not a symptom of PD, but I would welcome a more competent answer!

      • #15515
        Jean Mellano
        Keymaster

        interesting you say that Claudio, since I have been on the generic carbidopa/levodopa, i have started to get dyskinesia fleetingly.  This is ever since Merck pulled Sinemet off the market.  unfortunateley, I cant test my theory that my new dyskinesia symptom is related to generic unless i can get my hands on some sinemet

    • #15958
      Zvi Bleier
      Participant

      I was diagnose 2011, at the age of 62. I was fine until lately when I up my dos of C/L from 1 full in the morning plus 1/2  (25- 100) three a day, to a full one, three times a day. I am not sure if what I have is dyskinesia or Dystonia,  I experience involuntary movement of my right foot after I take my C/L and if I do not take it in time I feel starching of my right foot, and sometime my right arm. Anybody comments? I’ll appreciate any information.

      • #15960
        Jean Mellano
        Keymaster

        hi zvi

        as i understand it, dyskinesia (involuntary body movement) can be related to a too high dose of of c/l. dystonia is rigidity/stiffness.    anytime u change dosages and see effects like this you should talk to your dr.  document times/dosages and what u ate prior to meds and how much time before taking meds did you eat.  protein can interfere with c/l absorption.  getting the right dosages is an art and a science, something i have been working on for 2 years.

    • #16564
      Garrett McAuliffe
      Participant

      I seem to have a combination of dyskinesia and tremor of the Parkinson’s symptoms at the same time. When I’m particularly stressed or concentrating or active, my symptoms increase as does my dyskinesia sometimes. That seems to be a contradiction which seems to say that you either get symptoms or you get dyskinesia. I’m in my tank is his diagnosis and this is a now emerging as a regular experience. It has lasted for up to 12 hours at a time. I am now Using guided imagery and meditation to reduce all of those experiences

    • #15519
      Claudio
      Participant

      If your dyskenisia (I assume you are sure that is dyskenisia and not tremor… because obviously the latter is a symptom!) is due to generic drug, you can’t test your theory, you say, but if it’s due to overdosage (in some way related to the generic drug bioavailability, not to a real change of doses) with a bit of luck, and a selective strategy, you can find it out.
      If I were you, I would identify the most annoying dyskenisia event during the day. Then, the following day, I would replicate exactly physical activity and meals, but I would half the levodopa drug pill that preceded the event the previous day (I wouldn’t change anything else of your drug bouquet). Then, if with half the pill you don’t have dyskn, but you got symptoms, the following day I would take 3/4 of the pill, rest unchanged. As I said, with a bit of luck, you should find the proper dosage, the proper trade off between improving symptoms and keep dyskn away.
      To be better aware of what I said, you can have a look to this webinar of APDA especially between 6′ and 10′.
      Not enough? for a deep full insight on dyskenisia in PD, have a look to this “dedicated” webinar always from APDA.

      Hope you can  get rid of dyskenisia, pls let me have a follow up!

      • #15520
        Jean Mellano
        Keymaster

        claudio, thank you so much for this info, i need to take some time to digest the videos. i have been updating a log with times and dosages of c/l and need to analyze that some more.  i hope i can report back with some positive changes in the near future..

    • #16579
      Jean Mellano
      Keymaster

      Claudio

      when i took my dosages without paying mind to the clock, for 10 days I had no dyskinesia.

      So I stopped taking my first dose on an empty stomach and did not wait two hours after eating to take future dies.   However, my bradykinesia seemed slightly worse.  Choose my poison, dyskinesia or bradykinesia

    • #16582
      Jean Mellano
      Keymaster

      Hi Garrett. What I am starting to realize is that we may have choose fixing one symptom or side effect at the expense of another symptom.   Eg.  I believe if I cut back on my c/l my dyskinesia will dissipate but my bradykinesia May get worse.  I had a friend who had DBS surgery and her tremors improved but her swallowing and speech worsened.  Like I said in a post elsewhere, it seems like we may have to choose our poison 🙁

    • #16583
      Jean Mellano
      Keymaster

      Hi Garrett. What I am starting to realize is that we may have choose fixing one symptom or side effect at the expense of another symptom.   Eg.  I believe if I cut back on my c/l my dyskinesia will dissipate but my bradykinesia May get worse.  I had a friend who had DBS surgery and her tremors improved but her swallowing and speech worsened.  Like I said in a post elsewhere, it seems like we may have to choose our poison 🙁

    • #16584
      Jean Mellano
      Keymaster

      Hi Garrett. What I am starting to realize is that we may have choose fixing one symptom or side effect at the expense of another symptom.   Eg.  I believe if I cut back on my c/l my dyskinesia will dissipate but my bradykinesia May get worse.  I had a friend who had DBS surgery and her tremors improved but her swallowing and speech worsened.  Like I said in a post elsewhere, it seems like we may have to choose our poison 🙁

    • #16815
      Garrett McAuliffe
      Participant

      This is Garrett. I learned that dyskinesia is also increased by stress. So if I start to get dyskinesia and am doing something active or stressful, it gets worse. I have tried to lie down or pace around the house slowly. Instead last night, instead of hiding away, I joined the company of a neighbor who had stopped by.  Dyskinesia makes me speedy and slur my words. I plan on teaching my classes and participating is social events while being dyskinetic. I thought only quiet meditation would help. Of course, lowering, not taking any extra cd-ld at that time is also important for ending dyskinesia. Again, severe tremors accompany the tail end of dyskinesia. I don’t know why.

    • #16820
      Jean Mellano
      Keymaster

      hi garrett, i have heard socialization is very important for us with PD. However, I dont feel like socializing when my symptoms are flaring..  I am glad you found something that works for you.

    • #16838
      Norm
      Participant

      You may want to ask your doctor about Amantadine. My wife takes this and it controls her dyskensia about 80% of the time. It does have its side effects.

    • #16851
      Jean Mellano
      Keymaster

      Norm, thanks for sharing.  interesting, i have heard amantadine can cause dyskinesia.  go figure…. i did find when i was not so focused on timing of my C/L doses (eg. taking no sooner than 2 hours after eating and/or  1 hour before eating)i did not experience the dyskinesia.  but that could be weather related..  who knows??

    • #16902
      Laura Mahony
      Participant

      I developed dyskinesia early on once I started taking C/L. I noticed a twitching motion of my right hand and foot. I was taking 1 25/100 tablet 3 times a day. I noticed the dyskinesia started about 1-2 hours after taking a pill. I decided to take 1/2 a pill 6 times a day instead and the dyskinesia is gone. It isn’t easy taking a pill 6 times a day 1 hour separate from eating protein, but it is doable and my PD symptoms are controlled. I wonder if a continuous pump might prevent dyskinesia. Too bad there isn’t a subcutaneous pump that delivers a steady dose all day.

    • #16903
      Jean Mellano
      Keymaster

      laura, sounds like my challenge…i am going to try that.  my main symptoms are bradykinesia, fatigue and poor fine motor skills. did your revised plan of when you take meds help your symptoms more?

    • #16904
      Laura Mahony
      Participant

      No, Jean, there was no difference in my symptoms. I still have a slight tremor, but the bradykinesia, dystonia, loss of dexterity, arm weakness and lack of range of motion in my arm are all gone.

    • #16915
      Jean Mellano
      Keymaster

      laura, that is amazing all that and no dyskinesia, sounds like every 2 hours is a good way to go.. i have started today.

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