Excessive daytime sleepiness

Unlike general fatigue, which is often described as an overwhelming sense of tiredness or lack of energy, EDS is characterised by an uncontrollable urge to sleep during the day. For someone with Parkinson’s, this can mean that despite having had a full night’s sleep, or even when appearing alert during your “on” periods, you may find yourself fighting the urge to doze off suddenly during the day.

It is important to understand the difference between EDS and fatigue because the strategies for managing them can differ. Fatigue often feels like a deep, persistent weariness that isn’t necessarily relieved by rest. It can affect both your physical and mental energies, making even simple activities feel exhausting. On the other hand, EDS is specifically about the propensity to fall asleep during waking hours. While fatigue and EDS can coexist, they are not the same. Fatigue might stop you from doing activities because of a lack of energy, whereas EDS directly interferes with your ability to remain awake, regardless of how much rest you obtain the night before.

Treatment options

The good news is that there are several approaches to managing EDS in Parkinson’s. The first step is to discuss your symptoms with your care team, this might be your neurologist, Parkinson’s MDS, sleep specialist, or a Parkinson’s nurse. They will work with you to determine whether your sleepiness might be linked to your medication or other treatable conditions.

Non-Pharmacological Approaches

• Sleep Hygiene: Simple routines can make a significant difference. Keeping a regular sleep schedule, ensuring your bedroom is dark, quiet, and cool, and avoiding stimulants or screen time before bed can help improve your quality of night-time sleep. Better sleep at night often translates to less sleepiness during the day.
• Scheduled Naps: Some people find that introducing a short, planned nap during the day helps manage their sleepiness by preventing unexpected drops in alertness.
• Physical Activity: Regular exercise has been shown to improve overall energy levels and can lead to better sleep at night, indirectly addressing daytime sleepiness.

Pharmacological Treatments

• Medication Adjustments: If your EDS is medication-related, your specialist may consider adjusting the dosage or timing of your Parkinson’s medications. However, such changes are carefully balanced to ensure that your Parkinson’s symptoms remain well managed.
• Wakefulness-Promoting Medications: In some cases, medications such as Modafinil may be suggested. However, it’s important to note that evidence on the effectiveness of such medications for EDS in Parkinson’s remains limited and they can have side effects. Decisions regarding these treatments are always made on an individual basis.

Who to Seek Help From in Australia

If you are experiencing symptoms of EDS, it’s essential to seek help from professionals who understand Parkinson’s thoroughly:

• Your General Practitioner (GP): Your GP is often the first point of contact. They can assess your symptoms, review your medications, and provide referrals to specialists if needed.
• Neurologists and Parkinson’s Specialists: These professionals have specialised knowledge of Parkinson’s and can offer guidance on managing both motor and non‐motor symptoms.
• Parkinson’s Nurses: Often, Parkinson’s nurses play a key role in managing your overall care. They can provide practical advice on improving sleep hygiene and may offer additional resources.
• Allied Health Professionals: Occupational therapists, physiotherapists, and sleep specialists can also contribute to a comprehensive management plan tailored to your individual needs.
• Sleep Disorders Australia https://www.sleepoz.org.au/

Additional Considerations
It is also worth noting that the mental stress caused by living with Parkinson’s can exacerbate sleep issues. Anxiety, uncertainty, and depression may further interfere with both your sleep quality and your ability to stay awake during the day. A holistic approach to managing Parkinson’s that includes addressing mental well-being is crucial. Consider talking with a clinical psychologist or counsellor who understands the challenges of Parkinson’s to help manage stress.

Furthermore, support groups, whether in person or online, can offer valuable insight and coping strategies. Sharing experiences with others who understand your situation can be both comforting and empowering.