I was just wondering if there was anybody else had the same thing happened to them.A few months ago I started to wake up early (3am) and could not get back off because of the tremor in my left arm, so I would get up and shuffle into the lounge and get on the laptop. Eventually going back to bed for a restless few hours. Anyhow, one morning I stayed up a bit longer, (Oh i might add that I had not taken any meds since going to bed the night before ) I suddenly felt normal , no shake or shuffle. This lasted a few hours before i had to take my meds then immediately felt bad again for about an hour. i thought it might have been the trial drug but i have been off that since late october and this morniing my it happened again (3 days in a row now) I also thought that it could be the remnants of the night befores drugs but discounted that as i have to be drug free when doing the trial visits and on my last visit it happened that morning.. It's probably no big deal but just wondered if anyone has the same effect and if they know why?
what is the trial drug you are taking? I am also on a clinical trial.
Your Meds should be taken at the same time every day and i should imagine we can build up a level in our systems that makes us appear symptom free.
hi betty blue,
i'm on the same trial as you. I do take my meds on time, not sure about building a level up . Have asked Dr A at wolffson for his thoughts.
penny dropped after I replied to your post. I will be interested to hear what he says I go in April for results what about you?
you could be right, betty blue, i go down on the 17th dec for my last scan and last visit the next day
15th of April I travel for appointment on the 16th April that's a shame it would have been nice to say hi.
let me know how you get on xx
Drug induced dyskinesia is one of the most distressing side effects of pd,and it takes much but tweaking of meds to get that sought after stability, its like chasing your tail you just seem to have cracked it then something else fires up,, dystonia restless legs or in my case restless body, I know im comfortable but my pd ravaged brain is only receiving the opposite signals so I cannot rest,, so the answer to your question is yes I suffer intolerable dyski , mainly after I take my 5.00am meds,, I could lessen the dyski by not taking the 5.00am meds but I would wake up 99% shut down, so its a no brainer really , this war has been in progress since 99 it seems if I attempt a restful night by cutting or increasing my meds its cancelled out by the side effects and the worst is savage dyski how my head or more so my neck does not unscrew is a miracle, so on that cheerful note (not), I will leave this post, but before I go I did for a while gain some relief by wearing glasses with blue tinted lens,s but it was only a short respite and they are no longer effective other than making me look cool,, ( my grandkids view not mine)
Kindest Regards Otan heavy