Understanding the Side Effects of Parkinson’s Medications

For many people living with young onset Parkinson’s, medications are still the best way to manage their symptoms and maintain doing what they love to do every day. These medications can be carefully tailored by your neurologist to target your most bothersome symptoms, whether that’s tremor, stiffness, or reduced mobility. However, as with any treatment, there are side effects, and understanding them is an important part of managing your condition effectively.

Why medications are essential

Your body isn’t producing enough dopamine anymore. Parkinson’s medications work by replacing the levels of dopamine (a neurotransmitter) or mimicking its action in the brain so that your brain can use it to send messages to your body. The most common treatment, levodopa, is often supported by other drug categories such as dopamine agonists, anticholinergics, MAO-B inhibitors, COMT inhibitors, and amantadine. This approach is designed to address your most troublesome symptoms, ensuring that each part of your daily life, from work to family activities, is supported. It is very important to stick to your prescribed schedule to maintain a consistent level of dopamine in your system, to minimise the ‘off’/’on’ fluctuations in your symptoms.

How medications are delivered

When managing Parkinson’s, the way your medication is delivered can be just as important as the medicine itself. The delivery method is tailored to your needs and your body’s ability to absorb and utilise the medication. From oral medications (pills), injections and subcutaneous pumps to transdermal patches and nasal sprays, there are lots of ways to get the dopamine back into your system.

A range of side effects

While these medications can significantly improve your motor function, several side effects may occur.

Motor fluctuations and dyskinesia: Some people may experience involuntary, erratic movements (dyskinesia) or notice that the effectiveness of their medication gradually wears off before the next dose. These fluctuations can cause times when symptoms seem to return or worsen.

What you can do:

  • Keep a symptom diary to track when fluctuations happen.
  • Talk to your neurologist about adjusting your medication timing or dosage.
  • Ask about advanced therapies like apomorphine infusion or deep brain stimulation if fluctuations become hard to manage.

Gastrointestinal issues: Nausea and an upset stomach are relatively common, which can impact appetite and overall nutrition.

What you can do:

  • Take medication with food (unless advised otherwise).
  • Ask your doctor about anti-nausea medications that are safe for people with Parkinson’s.
  • Work with a dietitian to maintain balanced nutrition and manage sensitive digestion.

Sleep disturbances: Irregular sleep patterns, insomnia, and even excessive daytime sleepiness may develop. For people living with young onset balancing professional and family commitments, these disturbances can add an extra layer of challenge.

What you can do:

  • Create a consistent sleep routine and limit screen time before bed.
  • Discuss sleep-friendly medication adjustments with your care team.
  • Consider a referral to a sleep specialist or psychologist for cognitive behavioural therapy for insomnia (CBT-I).

Cognitive and mood changes: Changes in concentration, memory, or mood are sometimes reported, and these can influence social interactions or how you manage day-to-day activities.

What you can do:

  • Stay mentally active with puzzles, reading, or learning new skills.
  • Seek support from a neuropsychologist or counsellor familiar with Parkinson’s.
  • Join peer support groups through state/territory Parkinson’s organisations to stay connected and share strategies.

Other effects

Dizziness, low blood pressure, dry mouth, and blurred vision are also observed with some treatments. It is important to realise that everyone’s experience with medication side effects may differ. These symptoms can be managed with the right strategies and support. If you’re unsure whether a symptom is medication-related or part of Parkinson’s itself, keep a symptom diary and share it with your care team. There’s a medication tracker that you can record your symptoms hourly for your care team if you are noticing side effects.

Impulse Control Disorders (ICDs) and other behavioural side effects

A particularly significant side effect to be aware of, especially when dopamine agonists are part of your treatment, is the risk of developing Impulse Control Disorders (ICDs). ICDs involve a reduced ability to resist urges that could lead to compulsive and sometimes harmful behaviours. These behaviours may affect not only your personal life but also place additional stress on your family and care partners. These behaviours may include:

  • Pathological gambling: An uncontrollable urge to gamble despite negative consequences.
  • Compulsive shopping: Excessive spending that interferes with your financial wellbeing.
  • Hyper-sexuality: A marked increase in sexual thoughts and behaviours, which might be out of character.
  • Binge eating: An urge to overeat or consume food excessively.
  • Punding: A repetitive, non-goal oriented activities that can occupy hours of your time, leaving you distressed when you try to stop.

What you can do: If you or your family notice these changes in your behaviour, it is important to discuss these immediately with your partner, friend or family member and your care team. Early recognition can lead to adjustments in medication, such as lowering doses or switching treatments or delivery methods, often resulting in a reduction of these ICD symptoms. Remember, these side effects are not uncommon, and help is available.

Managing side effects with a collaborative approach

Managing the side effects of Parkinson’s medications involves ongoing communication with your care team, including your neurologist, Parkinson’s Nurse Specialist, GP, and pharmacist. Key strategies include:

  • Sticking to your prescribed schedule: This helps keep an optimal level of medication in your system, reducing the risk of fluctuations and unexpected side effects.
  • Regular reviews and Home Medicines Reviews (HMR): As Parkinson’s progresses, your medication needs may change. Regular reviews, including pharmacist-led Home Medicines Reviews, ensure that your treatment plan evolves with your condition.
  • Using dose administration aids: Tools like Dose Administration Aids or Websterpaks organise your medication into tamperproof, daily allotments, which is especially useful when managing multiple doses. Alternatively, weekly pill packs that are available from the chemist and you can pack your own doses into.
  • Discussing any new symptoms with your care team right away: Including changes in behaviour, mood, or cognition (thinking/memory). Open dialogue with healthcare professionals will help adjust medications before side effects significantly affect daily life.
  • Avoiding unsanctioned supplements: Always consult a health professional before adding herbal supplements, vitamins, or other natural remedies that might interfere with your Parkinson’s medications. Vitamin B6 is currently under review by the TGA.

Looking ahead

Living with young onset Parkinson’s means you are managing not just the physical symptoms, but also the intricacies of a treatment plan that evolves with you. The possibility of developing side effects, including behavioural changes like ICDs, can be challenging. However, with a proactive and collaborative approach, backed by regular checkups, open conversation with your care team, and awareness of your body’s signals, you can manage these side effects while continuing to lead a fulfilling and active life.

Your journey with Parkinson’s might include unexpected hurdles, but you are not alone. Stay informed about your medications, lean on your support network, and make sure that every change in your treatment plan is discussed thoroughly with your entire care team. This approach will help ensure that your treatments remain as effective as possible, safeguarding your independence and enhancing your quality of life.

References

Michael J. Fox Foundation for Parkinson’s Research. (n.d.). Medications for Parkinson’s. Retrieved from https://www.michaeljfox.org/

National Institute for Health and Care Excellence. (2017). Parkinson’s disease in adults: Diagnosis and management (NICE guideline NG71). Retrieved from https://www.nice.org.uk/guidance/ng71

Waller et al. (2021) The initial diagnosis and management of Parkinson’s disease. AJGP Vol. 50, Issue 11.

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