Today I changed from two x 2 62.5 Madopar to one x 125 Madopar 4 times a day and I’ve felt like cr8p all day. Is this normal or just me having a bad day
Before changing what was your time for taking meds & what is it now?
Unfortunately we have days or periods of days where we feel off - give it time & if it continues ring your doctor.
All the best
It sounds really frustrating — especially when you’re trying to do the right thing with your medication and then end up feeling worse. I’m sorry you’re having such a rough day.
For context, Madopar (levodopa + benserazide) is very sensitive to timing and dosing changes. Even though two × 62.5 mg equals 125 mg, changing the way it’s taken (strength per capsule, number of doses, spacing, or timing) can absolutely make you feel “off” for a day or two.
@Dookie I’m taking meds at the same time now as before 8am, 11am, 3pm and 7pm
@Quillon Thanks
I’ve been taking Madopar since diagnosed in 2018 initially a low dose and it worked with no real side effects.
Over the years it’s been increased, adding various other meds which I thought didn’t agree with me. Opicapone and Safinimide, which I stopped. Now taking 100 mg Madopar 3 hrly plus Controlled release at night 100 mg.
I don’t know what’s going on but I feel terrible.
Wear off still about 3 hours. But after about an hour after taking it I get a strange feeling in my head , like it’s burning and finding it hard to concentrate and communicate, dyskenisea..
Then as wearing off, cold shivering, griping stomach anxiety, numb hands etc.
It’s horrible
I’m wondering am I taking too much or not enough, I never had these symptoms before only the last 3 weeks or so. It’s effecting my life so much.
Any thoughts would be very much appreciated
Thanks
Hello @jo_Harris , welcome to the forum. We hope you find the community a helpful place to ask questions, share experiences, and get support from other members.
We’re sorry to hear that you’re feeling terrible and experiencing wearing off. This sounds like it must be really difficult. Nicola and Sharon have shared their experiences of living with wearing off and their tips for how to manage for our magazine, which you might find helpful: Living with wearing off and dyskinesia | Parkinson's UK
If you’re worried you may need a change in your medication due to your symptoms, reach out to your GP, specialist, or Parkinson’s nurse to discuss this further, as they may be able to make some changes to help.
We’re also here for you. Our trained advisers can offer support and advice, and you can also ask to speak to one of our Parkinson’s nurses: 0808 800 0303, Talk to us | Parkinson's UK .
Take care ![]()
Parkinson’s UK Moderation Team