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RESOURCES

Resources on a range of topics relevant to Living Idiopathic Hypersomnia and Narcolepsy. Check back here regularly as we add to our library. 

 

Idiopathic Hypersomnia Factsheet - Click here to view and download a copy of our IH Factsheet.
Our Factsheet was written by HA's director Michelle Chadwick and has been vetted and is endorsed by Professor Ron Grunstein, MBBS, MD, PhD, FRACP, and international Idiopathic Hypersomnia researcher Professor Karel Šonka MD, DSc.

Narcolepsy Factsheet - Click here to view and download a copy of our Narcolepsy Factsheet.
Our Factsheet has been vetted and is endorsed by Professor Ron Grunstein, MBBS, MD, PhD, FRACP.

'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’. There are detailed PDF's available that include the words and the slides from the presentations and much more information. You can find links to those PDFs here.

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What is sleep drunkenness/sleep inertia? - read our news post When waking up is the hardest thing you do every day.

 

Top Tips for Living with Hypersomnia - Practical advice for people living with idiopathic hypersomnia and narcolepsy, and their carers, and treating doctors.

Diagnosis to Aftercare - Practical advice for treating doctors of patients with Narcolepsy & Idiopathic Hypersomnia emphasising patient support and medication managementIf you are a health professional this document will help you improve the lives of your patients living with Idiopathic Hypersomnia or Narcolepsy.


IH PATIENT REGISTRY - Have you been diagnosed with Idiopathic Hypersomnia and live in Australia or NZ? 

Hypersomnolence Australia holds the only patient registry of people diagnosed with Idiopathic Hypersomnia in Australia. Click here to learn more.

Looking for support or to connect with others Living with Idiopathic Hypersomnia and Narcolepsy? Learn about our Living with IH and Living with Narcolepsy community groups.

Looking for stories and perspectives written by people living with IH or people living with Narcolepsy? Our Living with IH and Living with Narcolepsy pages are a place where you will find stories and other expressions by people living with Idiopathic Hypersomnia and Narcolepsy. We hope that their stories will help you on your journey.
 

Interested in advocacy and awareness? Our Central Disorders of Hypersomnolence (CDH) Advocacy and Awareness Registry is a unique resource for those in the Narcolepsy and Idiopathic Hypersomnia communities. Here, you can register for opportunities to participate in advocacy and awareness initiatives to support causes that matter to you. Whether you're interested in research, raising awareness, providing support, or taking action, this is the place to start. Learn more.

Want to write to policymakers? Click here for information that can help.

Dexamphetamine - read our news post "Why is my Dex not working"?  This information is also relevant to other amphetamine-based medications, eg; methylphenidate (Ritalin).
 

Modafinil and Armodafinil - read our news post "Modafinil/Armodafinil - Birth Control and Pregnancy"

Xyrem How to access Xyrem (Sodium Oxybate) in Australia and Why is Xyrem not TGA registered (approved) or PBS listed?

Electrolytes and Dehydration - people with Idiopathic Hypersomnia (IH) and narcolepsy are particularly susceptible to dehydration and therefore electrolyte imbalances. Learn how this can make hypersomnia symptoms worse or more difficult to manage - and how to avoid it.


What is a Multiple Sleep Latency Test (MSLT), and what it does and doesn't tell a sleep physician.
 

What is the Epworth Sleepiness Scale?

FAQ - We have put together a general list of frequently asked questions that you may find helpful.

Daytime Sleepiness – Finding the Cause

Do you feel tired all the time no matter how much sleep you get? The list of possible causes of excessive daytime sleepiness spans virtually every major area of medicine, neurology and psychiatry. A clear, detailed history is invaluable in negotiating these numerous diagnostic considerations. To assist patients and doctors when considering the cause of daytime sleepiness we have compiled a list of known causes and routine tests.

Know your Workplace Rights
We are sometimes asked what rights people with Idiopathic Hypersomnia and Narcolepsy have in the workplace. This is a guide. For more information contact the
FairWork Ombudsman. 

We do not receive funding and charge no membership. We are able to make the videos of our presentations and other resources available for free due the generosity of our few loyal supporters. If you can make a donation to help support our efforts - which will lead to more resources, please do so here, no amount is too small. All donations over $2 are tax deductible.

The Trustee for Hypersomnolence Australia is endorsed as a Deductible Gift Recipient (DGR) from 01 Jul 2013. It is covered by Item 1 of the table in section 30-15 of the Income Tax Assessment Act 1997  ABN: 19662120036

You can also watch these videos on our YouTube channel 
What Is Idiopathic Hypersomnia? - Prof. Yves Dauvilliers
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What Is Idiopathic Hypersomnia? - Prof. Yves Dauvilliers

Prof. Yves Dauvilliers explains what Idiopathic Hypersomnia is and how it differs from narcolepsy. Yves Dauvilliers is a Professor of Neurology and Physiology at the University of Montpellier, France. He obtained his MD in neurology in 2000 (Montpellier) and his PhD in neurosciences in 2004 (Montpellier). Since 2005, Prof Dauvilliers has been the Head of the clinical and research activity of the sleep laboratory at the University of Montpellier and the Director of the Sleep Disorders Centre, Department of Neurology, Gui de Chauliac Hospital, Montpellier. He is a member of the Clinical Research Department, University Hospital, Montpellier, of the scientific board of the University of Montpellier, and an associate coordinator of the Gui-de-Chauliac University Hospital. He is also a member of the research group INSERM U1061 and coordinator of the Sleep research axis. His research focuses on the diagnosis, epidemiology, pathophysiology and therapy of several sleep disorders, mainly neurological disorders including narcolepsy but also other central hypersomnias, parasomnias and restless legs syndrome (RLS). He has been the Principal Investigator in several open and placebo-controlled national and multi-national clinical trials in sleep disorders on narcolepsy, hypersomnia, RLS, and insomnia. Since 2006, Prof Dauvilliers has been the coordinator of the French National Reference Network for Orphan Diseases (Narcolepsy, Hypersomnia, Kleine-Levin Syndrome). He is a member of the scientific board of the French Sleep Medicine and Research Society, the European Sleep Research Society, the European-Narcolepsy Network, the International REM sleep behavior study group, and the American Academy of Sleep Medicine (Co-chair of the Narcolepsy section). Prof Dauvilliers is also part of the Editorial Board of Sleep Medicine and Sleep and Specialty Chief Editor of Frontiers in Neurology – Sleep and Chronobiology. He is the author or co-author of more than 250 papers published in international and national peer-reviewed journals, several book chapters, and he also edited two French books related to sleep medicine.
Overview of Current Idiopathic Hypersomnia and Narcolepsy Research - Causes, Diagnostics, Treatment. - Prof. Yves Dauvilliers
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Overview of Current Idiopathic Hypersomnia and Narcolepsy Research - Causes, Diagnostics, Treatment. - Prof. Yves Dauvilliers

Prof. Yves Dauvilliers gives an overview of current Idiopathic Hypersomnia and Narcolepsy research. Causes, diagnostics, and treatment. Yves Dauvilliers is a Professor of Neurology and Physiology at the University of Montpellier, France. He obtained his MD in neurology in 2000 (Montpellier) and his PhD in neurosciences in 2004 (Montpellier). Since 2005, Prof Dauvilliers has been the Head of the clinical and research activity of the sleep laboratory at the University of Montpellier and the Director of the Sleep Disorders Centre, Department of Neurology, Gui de Chauliac Hospital, Montpellier. He is a member of the Clinical Research Department, University Hospital, Montpellier, of the scientific board of the University of Montpellier, and an associate coordinator of the Gui-de-Chauliac University Hospital. He is also a member of the research group INSERM U1061 and coordinator of the Sleep research axis. His research focuses on the diagnosis, epidemiology, pathophysiology and therapy of several sleep disorders, mainly neurological disorders including narcolepsy but also other central hypersomnias, parasomnias and restless legs syndrome (RLS). He has been the Principal Investigator in several open and placebo-controlled national and multi-national clinical trials in sleep disorders on narcolepsy, hypersomnia, RLS, and insomnia. Since 2006, Prof Dauvilliers has been the coordinator of the French National Reference Network for Orphan Diseases (Narcolepsy, Hypersomnia, Kleine-Levin Syndrome). He is a member of the scientific board of the French Sleep Medicine and Research Society, the European Sleep Research Society, the European-Narcolepsy Network, the International REM sleep behavior study group, and the American Academy of Sleep Medicine (Co-chair of the Narcolepsy section). Prof Dauvilliers is also part of the Editorial Board of Sleep Medicine and Sleep and Specialty Chief Editor of Frontiers in Neurology – Sleep and Chronobiology. He is the author or co-author of more than 250 papers published in international and national peer-reviewed journals, several book chapters, and he also edited two French books related to sleep medicine.
Why is Australia so far behind the rest of the world? What can be done about it? - Prof. Ron Grunstein
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Why is Australia so far behind the rest of the world? What can be done about it? - Prof. Ron Grunstein

Why are medications not available in Australia that are available elsewhere in the world? Why is research not being done in Australia? Prof. Ron Grunstein explains why Australia is so far behind the rest of the world with regard to Idiopathic Hypersomnia and Narcolepsy, and what we can do about it. Professor of Sleep Medicine and NHMRC Senior Principal Research Fellow. Senior Specialist Physician, University of Sydney and Royal Prince Alfred Hospital. Sleep and Circadian Group, Woolcock Institute of Medical Research. Medical Advisor, Sleep Disorders Australia. Professor Ron Grunstein has been a consultant physician in sleep disorders for over 30 years and a pioneer in improving patient care in sleep medicine in Australia and internationally. He holds a Leadership Level 3 Investigator Award from the National Health and Medical Research Council 2021-25 and was previously a Senior Principal Research NHMRC Fellow and Professor of Sleep Medicine at the University of Sydney. He heads the Sleep and Circadian Research Group at the Woolcock Institute of Medical Research and is a Chief Investigator of two NHMRC Centres of Excellence. Professor Grunstein has had a distinguished career in medicine domestically, being the first Staff Specialist appointed to a full time position in sleep medicine in Australia in 1988. He was awarded the Australasian Sleep Association Distinguished Achievement Award in 2010, and the Royal Prince Alfred Foundation Medal for Excellence in Medical Research in 2012. In 2014, he received the Distinguished Professor Award from the Sydney Medical School and in 2016 has been awarded the Thoracic Society of Australia and New Zealand Research Medal. On Australia Day, 2019, he was made a Member of the Order of Australia "For significant service to medical education and research in the field of sleep disorders". He is also recognised as a world leader in his field, having been the first person outside of North America to win the prestigious Nathaniel Kleitman Distinguishable Service Award from the American Academy of Sleep Medicine in 2011. From 2007-2011, Professor Grunstein served as President of the World Sleep Federation (now known as the World Sleep Society), the roof body for sleep researchers and clinicians internationally organising successful world congresses in Cairns and Kyoto.
Living with Idiopathic Hypersomnia - Michelle Chadwick
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Living with Idiopathic Hypersomnia - Michelle Chadwick

Michelle shares not only her own experience but also what she has learned from the many, many hours she has spent listening to people living with IH all over the world. The goal of her talk is to help doctors and other allied health care professionals, and also family and friends of loved ones with IH get a better understanding of the challenges people with IH face so that they can hopefully provide the support people with IH need. She will be sharing her story and experiences in the hope of raising awareness and helping others navigate their way with Idiopathic Hypersomnia. After helping to establish a Nonprofit organisation to support disadvantaged young women Michelle decided to dedicate her time to a cause closer to home and one, she could see was lacking some much needed attention. Michelle was diagnosed with Idiopathic Hypersomnia (IH) after first noticing symptoms when she was 11. Her journey to diagnosis took over 20 years. Post diagnosis she discovered that there was a lack of information, awareness and support for IH. It was typical for people to come away with a diagnosis but not much else. There was nowhere to direct family and friends so that they could better understand IH and the implications it has on quality of life. There were no support services available, no research being done in Australia and no PBS approved medications specifically for Idiopathic Hypersomnia. She also found that the medications that are available are often not overly effective and can even make the symptoms worse. While there are many organisations that represent sleep and neurological disorders there were no organisations anywhere in the world that catered specifically to IH so Michelle set out to change that. At the beginning of 2013 she set up the world’s first Not for Profit organisation dedicated to Idiopathic Hypersomnia. At the time there were no records with regards to the number of people diagnosed with IH in Australia so to assist with research and education Michelle set up the Idiopathic Hypersomnia Patient Registry. In the same year HA was established Michelle also created the Worldwide Idiopathic Hypersomnia Awareness Week (IHAW). The IHAW is an annual event that brings together people from all over the world. Since then, Michelle has also created Living with Idiopathic Hypersomnia online support groups in Australia/NZ, the USA, Canada, and the EMEA region (Europe/UK, Middle East, and Africa). These groups meet regularly via video and offer much needed peer support. Michelle is a passionate sleep health advocate providing support and information for all sleep disorders so it made sense for her to join forces with Sleep Disorders Australia (SDA). In 2017 she joined SDA as a Director and is now SDA's National Chairperson. Her passion for sleep health led her to create Australia’s first Sleep Health & Wellbeing Expo. The first expo will be held in Brisbane on 9th April 2022.
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