Dyskinesia troubles


#1

78 yo, dx 2001.
I am currently on 150mg Prolopa (Sinemet) every 2 hrs, 100 mg last dose, and with each dose 1 x 200mg Comtan and 1 x 100mg Amantadine at 8am. I developed a dyskinesia about three years ago, (writhing of the right foot). It doesn’t bother me too much during the day. It will normally start if a dose is wearing-off prematurely which indicates that it is not active when it should be—at the dose peak. I let the meds wear-off after my 6pm dose so that they are worn-off when I go to bed, I am unable to sleep in a ‘on’ state, (loud buzzing in ears and tense body, plus I would like to keep my L-dopa intake as low as possible). My problem started about four months ago, it is that when I go to bed about 10pm the dyskinesia starts and I am unable to go to sleep. Although it is not severe it is enough to keep me awake. This can go on for three or four hours and then it will stop abruptly followed by a tremor in my jaw, right arm and left leg which is not too severe and will last about twenty minutes, then I am able to dose-off. It is my understanding that dyskinesias are a side-effect caused by the L-dopa and are active when the medicine is at peak level, mine is active when it is at its lowest level. I prep for bed at about 7 pm while I am still ‘on’ as it is a struggle just to get into bed after the meds worn-off. Can anyone explain why my dyskinesia is active when there is no longer any L-dopa in my brain?


#2
Seems to me your body is graven it like a fix have you talked to pd nurse or your nero that would be my first call also may have a chat about taking a slow release drug at bedtime so your body still getting it's fix thats some amount of of drugs your taking every two hrs .i take 8am 125 mg sinemet ,entacphone, azilect 10am 62.5mg 12pm 125mg sinemet, entacphone 2pm 62.5mg 4pm 125mg sinemet 6pm 62.5mg 8pm 125mg sinemet entacphone 10pm bedtime 250mg sinemet slow release. I think you need to talk to a professional. All the best

#3

Hi canuk

I also get IM whenIm wearing off.Mine are quick and jerky like a jack in the box  variety,lol

I think many get wearing off dyskinsia.Doctors dont like to deal with sideeffects to much a bother.

Im sorry you are in so much discomfort.I myself have cut back half almost on sinemet and feel just alittle stiff till I losen up.Thats my best med keeping moving.

Wish i could help more as i know the peril like you have.

There is a new drug coming for dyskinesia hope it helps

best

john


#4

Dyski is  hellish   no  argument there though I seem to have developed some immunity to the  horrible  twisting  and squirming  which  is   worse at  meal  times or  when I  become upset  or  emotional in  any  way, (difficult  when  you  have  parky)  also  I have  Ddopa which maintains  a  degree of  stability ,  it delivers  a  Levadopa/ carbidopa gell   to  my small intestine,  and  takes  care  of things  normaly,  but  it  has  a  boost button which  I can  take in more  drug if  I  need it and  its  easy  to  take  in  sliightly more if not careful  which  fires  up  Dyski  , also  have  you  tried  blue  lenses  for  your  glasses,  when  I  was  told  about  the  amazing  effect of blue  lenses  I  thought  what  a   load of  cobblers  but  then I thought well  ventured necessity is  the  mother of  adventure of   inventive  invention,,  so  I TRIED  A  PAIR   and  they  work,, I  am  rather  more  tolerant  of  them now  and  there  effectiveness  has  lessened  but  theyy  do  still  work  on  less savage  attacks  of Dyskie,  see  for  your self, look for      lBLUE  LENSES and Dyski    the  results are astonishing         

                                                Best wishes   FED


#5

First I would like to get your dose straight, (8am 125 l/c plus comtan) (10am 62.3 l/c plus Azilect) (12pm 125 l/c plus comtan) (2pm 62.5 l/c no comtan),  (4pm 125 l/c no comtan) (8pm 125 l/c plus comtan) (10pm 250 l/c c/r). Total l/c 937.50mg. How does the Azilect help? Have you ever tried it without Azilect? 


#6
I also take entacphone with my 125mg. I was getting about half an hour on time each 125mg went right down hill .then my nero àdded azilect and entacphone as a last resort the results were amazing over the next few days and still are takes about 10.30am to come on then pretty good all day and start wearing of about 9.30pm but if i do anything that takes alot of energy then that's it I'm like bag of s__t all day go all clamey and sweaty soaking wet dizziness got to lay down so now i know how far to push myself. I also have dbs and this makes amazing difference but a lot of people swear by azilect

#7
1mg azilect / tried rasagiline not the same!