I have had a week on 1 x 50/12.5 madopar a day, a week on 2 x 50/12.5 a day and 3.5 weeks, so far on 3 x 50/12.5 a day. When will my body get used to it? I am very tired and it seems to be making my orthostatic hypotension worse. I have trouble sleeping even though I am on Melatonin. My Parkinson’s is very early and I dont have much in the way of motor symptoms. Most of my stiffness is severe arthritis. I called the Parkinson’s nursing team and didnt feel they were very helpful but maybe I am being impatient and my body will get used to Madopar, reducing side effects eventually? Advice anyone?
Good morning Rob … I tried Madopar for a week & it did not work for me so I was advised to stop it which I did. I then tried Ropinirole for 10 days, that didn’t work so
I stopped that. Then came co-careldopa aka Sinemet, which did help & I am still on it. I do think it causes my sleep issues but I think the benefits outweigh the disadvantages.
I have also tried Melatonin to help me sleep but it was worse than useless.
I would suggest you tell your Parkinson’s team that Madopar is not helping & ask to try a different Parkinson’s drug.
Best wishes
Steve2
Thanks Steve. If I could stop feeling like a Zombie all the time I would be much happier. Sure its Lack of sleep/Low blood pressure. I will do as you say when I pluck up courage to speak to the Parkinson’s nurses again. In what way did your meds not help that they do now? Did you feel like me or was it motor symptoms?
Hi Rob … I had to give up playing golf about 15 months ago as my Parkinson’s was too bad. So I took up indoor bowls. This is the most unenergetic sport there could be.
Pre taking the Sinemet I was finding that I kept having these gait “freezing” attacks,
once ending up in hospital for 24 hours. I would stand on the bowling mat & about to bowl my bowl & I would be unable to move & had to stop playing. This might happen once a week & I would have to miss a week’s bowling.
After I started taking Sinemet I have been able to play bowls every day. Often playing 5 x 2 hour bowls sessions every week. There are 8 of us in the group so I am only bowling 2 bowls every 15 minutes & sitting down the rest of the time. So I bowl 24 bowls in this 2 hour period.
To me this has 100% proved that Sinemet helps me to do something I enjoy every day. The downside is that I sleep poorly, have bad dreams & feel fatigued.
A lot of my problems are down to the side effects of the drugs I take. I have a number of different conditions. I have just been put on 3 more pills a day which makes 21 pills a day. When I walk I rattle.
Do phone your Parkinson’s team IMMEDIATELY & tell them you are not getting on with Madopar it is plain daft not to.
If it would help why not phone the Parkinson’s nurses here on 0808 800 0303 & talk to them. It is free of charge. They have helped me in the past.
Best wishes
Steve2
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Thanks Steve. Sinemet obviously works well for you. I was told by the head nurse I should give it 6 weeks on my full Madopar dose and they dont seem to like anyone disagreeing with them.
It can take several weeks for your body to adjust to Madopar; side effects like fatigue and hypotension may improve over time. Keep communicating with your healthcare team for adjustments and support.