Dyskinesia - continued!


#1

Hi again everybody

Posted about dyskinesia April this year and it continues to drive me nuts. I currently take stalevo 125 at about 0730, 1000, 1245, 1545 and 1845. In addition I take Requip XL Ropinirole 6mg at 0730 and 4mg at 1845. I also now take 2 x 0.5 mg Clonazepam at 2100. Sleep is very poor and usually no more than 3 hours in one continuous bout.

But the dyskinesia gets worse, particularly at lunch and dinner times..I think the motion of the jaws sets off 'sympathetic' body motion. My 'specialist' had never heard of this (but he's actually an MS specialist)

Saw the specialist yesterday and he now wants me to add Selegiline 5mg at midday to the drugs cocktail.

He's a very nice chap, but I've very little confidence left in experimentation, seems to be a matter of guesswork. But I'll have to do something as my 'window' of movement without dyskinesia is getting smaller and smaller. I'm tired of turning heads in restaurants! I feel like getting a t-shirt with "YES - ITS PARKINSONS,STUPID!" written across the front. I content myself with wearing my Muhammad Ali t-shirt at the gym! I can still do 30 mins 3 times each week, but now I just walk.

Any ideas on my dosages would be really,really appreciated especially the addition of Selegiline. I dont want this thing to beat me just yet - I know it will eventually. 

 


#2

I know what you are talking about! As I read your post and your list of meds - I thought, here we are, a kindred spirit! I think that Dyskinwhatsit (My name for it) is controlled by the amount of stalevo you take.

I used to take Stalevo 100 five times a day. Now I take stalevo 75 seven times a day. A smaller dose but more often. I still suffer with 'whatsit' and at times it can be bad, interrupting sleep, but in general, there has been an improvement in how I feel and definitely fewer attacks of dys.

my drug regime is

7am madopar (dispersible)

from 8.00am stalevo 75mg every 2 and a quarter/two and a half hours

7pm requip/ropinirole xl 16mg

bedtime (Usually 1am) sinemet sr

I have had parkinson's for twenty years - diagnosed at 41.

My policy is to keep number and variety of drugs as low as possible and to give new timetables a couple of months to start to work effectively.

I hope you find some method to help your problem. I'm sure visits to the gym are an excellent idea.I am an ardent believer in 'creative' therapy - art, music, dance, writing, crafts etc.

All the best

Lin


#3

 

Hi

I recently had the option of taking more by day or a overnight, I chose a overnight Madopar CR as i was waking up in Pain at various times overnight with my joints,legs,arms and shoulders very tense and tight.

Although i take amitriptyline too help me sleep i have noticed i get a deeper peaceful through too the next morning sleep with the overnight Madopar CR, but i still find myself off in the mornings until the next dose comes into play.

Prob totally useless info lol, 


#4

Hi john

Sounds like you are taking to higher dose of stalvo causing the dyskinias wouldnt want to start on selegaline have you heard of amantadine it can help with the dyskinisias doesnt work for everyone but might be worth a try, but you definetly sound as though you are over medicated.