Changing meds ? its hell!

Hi everyone , i would just like to ask everyone about any tips they can give me to pull me away from the precipice i appear to be on…i was diagnosed 20 (tes TWENTY) years ago and have been stable for a very long time . I was taking Madopar(Co-beneldopa) along with Amantadine and Entacapone, i also used to take Ropinerole (a horrible drug) . Until fairly recently i felt fine - however , and i now know it does exist - i developed an Inpulse Disorder - i started too gamble and also used dating sites in the pursuit of sex (plain and simple) Thankfully , i have a very understanding wife (once the consultant , a lady, convinced her that i didnt really have a lot of control - the ropinerole saw to that. any way to cut a long story short i have cut back from 22mg to 4mg of ropineroole a day - and i currently feel the worst i have …ever. Only 4 months ago i completed the London Marathon - yes , a full marathon…this weekend i had to pull out of Parkrun (3.1miles !). i just can’t see myself gettiing back to where i was (minus the gambling and sex addictio obviously)
Has anyone else had this problem ? i would really like to knoww how you overcame it ? my tremour is worse than ever and my mobiolity has been severely affected…any ideas , im not going to give up gym and running just yet but please tell me if you have any ideas

Hello, dw…, my husband was diagnosed 8 years ago. For about the first 5 years he was just taking Sinemet with the dosage being increased gradually every so often. About 3 years ago the PD nurse added RopineroleXL as she said there was a risk of him developing dyskinesia over a long period of time and increasing the levadopa (Sinemet). Earlier this year he decided to stop the Ropinerole as the consultant thought it was having an effect on his cognivity, plus he was sleeping all the time. He was actually in hospital after a fall when they did a meds reshuffle and stopped Ropinerole… However this was done far too quickly over the course of one week! It was horrendous for him. He suffered dreadful withdrawal effects from it and it took many weeks for him to get back on an even keel again. It was an utter nightmare for us both. We have since been told it should have been titrated much more slowly - over months. Anyway that’s in the past and thank goodness he’s off that awful drug. Thankfully he only reached 8mgs before he came off it. I dread to think what he’d have been like on a higher dosage and a longer period of time When he’d fully recovered, the consultant added Safinamide to replace the Ropinerole. I remember the PD nurse saying about the compulsive behaviour risks of Ropinerole, but she stressed that it would more likely happen to a person who perhaps had that inclination beforehand. It’s a very nasty drug. I’m sorry we ever agreed for my husband to go on it. Finding the right medication for each individual’s complex set of symptoms is nigh impossible and I think it’s just by sheer trial and error if you are lucky enough to find the one(s) that suits. As everyone knows, there’s no ‘one size fits all’ with this most insidious of diseases. Wishing you well on your total Ropinerole withdrawal journey… Jean