Conquer the Sleep Struggle: Tiredness, Fatigue, and Excessive Daytime Sleepiness in young onset Parkinson’s

Living with Parkinson’s in your prime means facing challenges that aren’t just physical (motor symptoms), they’re also about how you feel every day (non-motor symptoms). You might notice that sometimes you’re simply tired, other times you’re battling deep-seated fatigue, and occasionally, you’re hit with sudden bouts of falling asleep, or excessive daytime sleepiness (EDS). While these terms may sound similar, each one tells a different story about your body’s energy and sleep patterns.

Collectively, these symptoms are often described as sleep-wake and energy disturbances. In many clinical and research settings, especially when discussing conditions like Parkinson’s, EDS, fatigue, and tiredness are grouped under non-motor symptoms that impact how well you rest and how much energy you have during the day. They highlight problems with both sleep quality and overall energy regulation.

 Tiredness vs. Fatigue vs. EDS

Tiredness

  • What It Is: Tiredness is the usual feeling of having low energy. Many people with Parkinson’s feel this way every day.
  • Key Point: It usually comes and goes and can often be fixed with some rest.

Fatigue

  • What It Is: Fatigue is a stronger, deeper form of exhaustion. Unlike simple tiredness, it does not go away even after you rest.
  • Key Point: Because it sticks around, fatigue can make it harder to do everyday activities and can even affect your mood and concentration.

Daytime Sleepiness (EDS)

  • What It Is: Daytime sleepiness means feeling an overwhelming need to sleep during the day, even if you had enough sleep at night.
  • Key Point: About one-third of people with Parkinson’s might experience sudden sleepiness or “sleep attacks” throughout the day. Certain medications and poor sleep at night can add to this problem.

 Why Do These Happen?

  • Medication Effects: Some Parkinson’s medications, like dopamine agonists or levodopa, can make you feel sleepy at unusual times. Keeping track of when you feel sleepy might help you see a connection with your medication schedule.
  • Changes in the Brain: New research suggests that daytime sleepiness might not just be a side effect. It could be a part of Parkinson’s itself since the same changes in your brain may cause other symptoms.
  • Problems With Nighttime Sleep: If you have trouble sleeping at night—maybe because of insomnia, frequent trips to the bathroom, or other sleep disorders—your daytime energy will suffer.
  • The Difference Between Tiredness and Fatigue: Remember, being a little tired is different from the heavy, lingering feeling of fatigue that doesn’t go away with rest.

 Tips & Treatments to Reclaim Your Day

Don’t let sleep issues quietly steal your days. Taking action, whether by fine-tuning your sleep habits, reassessing medications, or reaching out for expert help, can significantly boost your energy, mood, and overall quality of life. Understanding what you’re up against is the first step. Here are some practical strategies to manage each:

  1. Nail Your Sleep Hygiene
    • Stick to a Schedule: Consistency is key. Make it a habit to go to bed and rise at the same time every day.
    • Create a Restful Environment: A cool, dark, and quiet room can work wonders for quality sleep. Blackout curtains and white noise machines might be game-changers.
    • Wind Down Properly: Replace screen time with calming activities like reading, meditation, or listening to gentle music.
  2. Monitor Your Medications
    • Keep a Sleep Diary: Note when sleepiness hits and check if it correlates with your medication schedule. This can be valuable information when discussing treatment adjustments with your neurologist.
    • Regular Reviews: Parkinson’s medications are a balancing act. Regular check-ins to fine-tune your regimen can minimise unwanted sleepiness. Ask your GP for a Home Medications Review referral and have a pharmacist come to your house to discuss your medications with you.
  3. Embrace Smart Napping
    • Short, Planned Naps: A 15- to 20-minute nap can refresh you without derailing your nighttime sleep.
    • Set an Alarm: This helps prevent longer, unplanned sleep episodes that could disrupt your schedule.
  4. Stay Physically and Mentally Active
    • Exercise Regularly: Even low-impact activities like walking, yoga, or swimming can boost overall energy and reduce feelings of fatigue.
    • Engage in Fun Activities: Keeping your mind occupied with hobbies and social interactions can help counteract both fatigue and EDS.
  5. Seek Expert Advice
    • Sleep Assessments: Both in clinics and hospitals, objective sleep studies are available to help pinpoint the root of your daytime sleepiness.
    • Explore Emerging Treatments: Research into new drugs targeting EDS offers hope. Staying updated on clinical trials and new therapies may bring fresh opportunities for managing your symptoms.

Understanding the nuances of tiredness, fatigue, and EDS can help you have better conversations with your care team to find solutions to your symptoms. Find out more on a wide range of topics expertly reviewed by their peak bodies at the Parkinson’s Australia Info Hub.

 

References

Chaudhuri, K. R., & Schapira, A. H. V. (2009). Non-motor symptoms of Parkinson’s disease: Diagnosis and management. The Lancet Neurology, 8(5), 464–474.

Kluger, B. M., Krupp, L. B., & Enoka, R. M. (2013). Fatigue and fatigability in neurologic illnesses: Proposal for a unified taxonomy. Neurology, 80(4), 409–416.

Arnulf, I. (2005). Excessive daytime sleepiness in parkinsonism. Sleep Medicine, 6(Suppl 1), S21–S26.

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