Unwanted side effects - Viv's story
Side effects can be difficult to deal with – for both the person living with Parkinson’s and their loved ones. Here, Viv shares her experience.
I started taking a dopamine agonist when I was diagnosed with Parkinson’s, 10 years ago.
At first things were fine, but as the dose gradually increased, I started experiencing side effects which I thought were Parkinson’s symptoms.
"I felt so alone..."
I started experiencing insomnia and hallucinations, and was sleeping 3 to 4 hours a night. During the day I would fall asleep mid-conversation.
I took early retirement 7 years ago due to my increasing ill health. 4 years later, I was taking the maximum dose of my Parkinson’s medication.
I started to feel very paranoid. I accused my husband of having an affair. I also became convinced that my laptop had been hacked, and our flat and car had been bugged.
I felt so alone and didn’t feel safe anywhere. I was an emotional mess and forever dissolving into tears.
Everything I was believing and feeling was very real to me and I was searching for answers that I just couldn’t find.
Nothing helped
My husband bore the brunt of my paranoia. No matter how many times he told me he wasn’t doing the things I accused him of, I wouldn’t believe him. My children were worried as my behaviour was so unlike the mum they knew.
Eventually I was taken to hospital and seen by the mental health team. I agreed to be referred to a psychologist and spent 8 weeks talking things over with her. But nothing helped me.
Everything I was believing and feeling was very real to me and I was searching for answers that I just couldn’t find.
I began researching online to find out more about the Parkinson’s drug I was on and eventually I contacted my Parkinson’s nurse. He gradually reduced my medication and then prescribed different Parkinson’s medication.
It took a while before I started to feel better. It was an incredible relief to discover I didn’t have to live with these feelings for the rest of my life. A change of medication was the answer.
Feelings of paranoia aren’t easy to discuss with anyone. But don’t be afraid to talk to your specialist or Parkinson’s nurse, and question how you’re feeling.
Opening up
Feelings of paranoia aren’t easy to discuss with anyone. But don’t be afraid to talk to your specialist or Parkinson’s nurse, and question how you’re feeling. Communication is the key to getting the right help - don’t suffer in silence.
I shared my experience with a friend who was diagnosed with Parkinson’s a few years ago. Like me, he asked his Parkinson’s nurse to change his medication due to side effects.
We started a support group to help others. Family and friends join us as well - sharing our experiences is a great help to us all.
Professor Annette Hand, a Parkinson’s nurse, explains what to do if you experience any side effects.
The side effects of Parkinson’s drugs can include:
- dyskinesia and wearing off
- hallucinations and delusions
- impulsive and compulsive behaviour
- sleepiness
Before starting any new Parkinson’s medication, your specialist or Parkinson’s nurse should explain how it works, how to take it, what benefits you may see and any potential side effects.
You can find out more about any specific side effects by reading the leaflet that comes inside the medication packet. You can then decide if you want to try it or not.
Starting any new or different medication should be a shared decision between you and your healthcare team.
It’s helpful to have a loved one with you at the appointment, so they’re also aware of all the medication issues. They may spot positive benefits, or any side effects, more quickly than you may be able to.
Side effects can vary from one person to another. Some side effects may happen months or years after starting the medication. Other people may never experience them.
If you develop any unwanted side effects or symptoms, contact your specialist or Parkinson’s nurse. Some side effects will mean you must stop the medication. Always do this with support from your specialist or Parkinson’s nurse who will gradually reduce and then stop the medication.
Never stop taking any Parkinson’s medication yourself or change the dose as this can increase your symptoms and can be dangerous.
Keeping a diary of symptoms before starting a new treatment can be helpful to monitor both the benefits of treatment and any side effects. You can also report side effects on the government’s Yellow Card website.