Hi there, I was diagnosed in September 2025 and given Madopar 100/25 which helped at first but now I’m feeling terrible and can’t get to speak to my nurse. I think she covers the entire county! I now have awful internal tremors and cannot function normally at all. I need to know if this is normal although can’t believe anyone can suffer this much. I’m desperate. Anyone else know of this problem? Strangely, I’m usually feeling a little better after 9pm . I take my dose of Madopar roughly every 5 hours. Thank you for listening. Sharon
Hi Sharon, thank you for sharing this with us. It sounds like things have changed quite a bit since you started your medication, and that can feel overwhelming.
If you’re struggling to reach your Parkinson’s nurse, it may help to contact your GP or the neurology team and explain how much this is affecting your day-to-day life.
Some people also find it useful to keep a diary of symptoms and medication times to show patterns.
You’re not alone in experiencing this, and you deserve support to make things more stable. If you feel like speaking this through with our team, we’re here on 0808 800 0303, and no question is too big or too small.
Sending our warmest wishes
The Parkinson’s UK Moderation Team 