Top Tips for Living with Hypersomnia

Practical advice for people living with idiopathic hypersomnia or narcolepsy, and for the healthcare professionals who support them. You can download a copy of these Top Tips here - Updated November 2025

These tips are drawn from lived experience within the Hypersomnolence Australia community and informed by clinical understanding.

One of the most frequently asked questions is, "What can I do to help wake up and get going in the morning?”

For many individuals, having someone physically wake them up is necessary. However, establishing and sticking to a daily wake up routine can also be beneficial. “This is what my bedside table looks like every night before I go to bed. I use a pop top water bottle because I’m in no state to screw the top off a regular one. I’m still horizontal and half-asleep when I take my first dose of medication for the day. Then, I continue to sleep for another hour or so before attempting to wake up for the final time. Having wake-promoting medication in my system already helps me to get through the wake-up ordeal.” Michelle Chadwick.

Be kind to yourself and protect your energy. Quiet your inner critic and focus on accepting where you are. Celebrate your successes. Learn your strengths and limitations, then adjust your expectations accordingly.

You know yourself and your limits better than anyone else. Be clear and confident when sharing your needs and boundaries, your time and energy are valuable, so it’s ok to protect them and say no.

Organise your morning the night before Prepare as much as you can in advance, for example, kids’ uniforms, lunches, and bags before bed. Plan ahead, make lists, and set reminders.

Tasks that might take an hour for others can take much longer when you live with idiopathic hypersomnia or narcolepsy. Feeling prepared helps reduce stress and anxiety.

Identify when you’re most productive. Notice when you have the most energy or focus and plan key tasks for that time. Medication may help you feel more alert than you would at other times of the day, but you may also experience a subsequent ‘crash’ as this medication wears off. Try to plan your days and tasks accordingly.

Grief and Acceptance.

It’s normal to grieve the loss of who you were before your symptoms began, or who you hoped to be. Acceptance doesn’t mean giving up; it means making peace with change so you can move forward.

Acceptance helps you appreciate when treatments work and create a life that fits your condition, one that’s realistic, balanced, and free of guilt or shame. Letting go of self-criticism allows you to set kinder goals and build a future that feels brighter and more your own.

Adequate sleep is essential. While it may be tempting to use medication to enable you to participate in life more, it’s important to understand that people with idiopathic hypersomnia generally do not function well on less sleep than they’re used to.

You might manage on an average person’s 7–9 hours of sleep for a day or two, but pushing beyond that often leads to a crash. Many people who’ve learned to manage their symptoms still sleep excessively despite medication - they just sleep a little less excessively.

Prioritise sleep and build a routine that works for you. If naps help, as they often do for people with narcolepsy, schedule them. Pay attention to your sleep environment and how light, especially sunlight, affects your body clock. Good sleep hygiene and consistency can make a big difference.

Give yourself a break from medication. To help prevent tolerance, plan regular days off your wake-promoting medication, for example, weekends when you may not need to drive or make important decisions. Some people take a longer break, such as during holidays. If your medication feels less effective, these breaks may help reset your tolerance.

Find the right healthcare support.

Surround yourself with the right healthcare team, people who listen, believe you, and are willing to learn with you. This may include your GP, sleep specialist, occupational therapist, psychologist for mental health support, nutritionist, or movement specialist. Having supportive professionals around you makes it easier to manage symptoms and to talk openly about what is or isn’t working.

Nourish your body and keep it moving. Good nutrition and hydration won’t make idiopathic hypersomnia or narcolepsy disappear, but poor nutrition, dehydration, or vitamin and mineral deficiencies can make symptoms worse or more difficult to manage. That afternoon crash may not only be caused by the hypersomnia hitting you when your medication wears off, it can also be made worse by the carbohydrates (sugar) you’ve eaten earlier in the day.

Learn about the effects of dehydration and electrolyte imbalance. Prioritise physical activity just as you do sleep and nutrition. Living with idiopathic hypersomnia or narcolepsy often means being highly sedentary, which can increase tiredness and fatigue. A lack of physical activity causes deconditioning of the body’s musculoskeletal and cardiovascular systems and can lower mood, all of which contribute to fatigue and can make symptoms worse or more difficult to manage.

Even small amounts of movement can help. Try gentle activities that feel achievable, a short walk, stretching at home, watering the garden, or taking the dog out. The goal isn’t traditional “exercise,” but regular movement that supports circulation, muscle tone, and mood in ways that fit your energy levels. Learn more about the effects of dehydration and electrolyte imbalances. Self care. Practicing self-care benefits our physical, mental and emotional health and wellbeing. It supports us to foster a better relationship with ourselves and minimise stress and anxiety. It teaches us to be mindful of our own needs, to better support ourselves and others.

You’re not alone — join our community. Hypersomnolence Australia provides opportunities for people living with idiopathic hypersomnia and narcolepsy to connect through our online Living with... Community Groups. These groups offer a friendly, safe space to share experiences and challenges, and engage with others who truly understand. Facilitated by experienced members of our team, these regular catch ups help reduce isolation and provide reliable information and a sense of community. Click here for more information about our community groups. You can download a copy of these Top Tips here Update: You may find this post helpful : Life after Diagnosis - Live your best life 'LIFE AFTER DIAGNOSIS - Insights into how to live your best life' is a 3 part presentation and discussion on ‘Improving overall health and wellbeing and how that can have a positive impact on managing IH symptoms’.

In part one we delved into the important topic of self-care. We discussed what that means and how it can positively impact your wellbeing. We also explored the concept of acceptance, which can be a transformative milestone you may not even realise you need to reach. We discussed the effects of stress and effective methods for minimising its impact with practical tips on achieving that goal.

In part two of our series explored healthy eating, including hydration and how making different choices can have a positive impact on our symptoms and our ability to manage them. Additionally, looked at medication management and discussed ways to harness its full potential.

Our third session focused on sleep, the important role of morning sunlight including the impact of melatonin and cortisol. The consequences of Vitamin D deficiency and also physical activity and the benefits of Mindful Movement.