Hypersomnolence Australia's Articles

3. Jul, 2017

It is Australia’s Sleep Awareness Week (SAW) this week (3-10th July). SAW 2017 is a joint initiative between the Sleep Health Foundation and the Cooperative Research Centre for Alertness, Safety and Productivity (Alertness CRC). This year it will focus on the negative impact of shift work and how better scheduling and smarter lighting can reduce these impacts. The key message is; Better sleep = smarter, safer workplaces. Much like previous SAW’s the focus and key message isn’t directly relevant to people with Idiopathic Hypersomnia however data from our Sleep Health in Patients with Sleep Disorders Survey tells us that people diagnosed with sleep disorders including Idiopathic Hypersomnia are not sleeping anywhere near the recommended amount (considering their daytime sleepiness).

*25% report regularly sleeping 6 hours or less, and the majority do not nap during the day. All experience excessive daytime sleepiness.

*45% of all responders have microsleeps (briefly fall asleep without realising it) or unintentionally fall asleep during the day in settings not appropriate to do so (many experience both).

Hypersomnolence Australia's key message this SAW is; if you are struggling to stay awake during the day and you are regularly sleeping 6 hours or less in a 24-hour period you are at a significant risk to yourself and others. This is particularly the case for those of you that drive, operate machinery and who are responsible for the lives of others ie; parents, early education workers, doctors, nurses and other healthcare workers as well as police and associated emergency services. Please discuss this with your doctor as soon as possible. 

Professor Shantha Rajaratnam leader of the Alertness CRC research program at Monash recognises that "impaired alertness due to sleep loss, sleep disorders and body clock disruption is a significant societal problem."  The Alertness CRC is "dedicated to reducing the avoidable burden of poor alertness on the safety, productivity and health of all Australians."

Facts from the Cooperative Research Centre for Alertness, Safety and Productivity (Alertness CRC):

- Almost 20% of Australian adults are sleeping less than six hours per night... The resulting economic and health care costs are enormous and cost Australia over $35 billion every year. There is a clear need to reduce this societal burden.

- Untreated sleep disorders lead to a several‐fold increased risk of occupational accidents and injuries and reduced productivity.

- Poor alertness has widespread effects on core brain functions: reaction time, decision making, information processing and the ability to maintain attention.

- Almost 10,000 serious workplace injuries and more than 25,000 serious injuries from road crashes are caused by poor alertness each year.

- Performance is reduced when alertness is impaired.  Poor alertness is endemic in modern society due to the combined effects of inadequate sleep and untreated sleep disorders.

For more information on the implications of insufficient and poor qualify sleep refer to the Sleep Health Foundation and Cooperative Research Centre for Alertness, Safety and Productivity (Alertness CRC).
And for information "to help you stay alert, safe, and productive at work" check out the Alertness CRC's new website - "WorkAlert" 

HOW MUCH SLEEP DO WE REALLY NEED?

If you are a teenager or young adult you may be surprised. It is recommended that teenagers (14-17) sleep between 8-10 hours, however it may be appropriate for them to sleep as much as 11 hours. Young adults (18-25) are recommended to sleep 7-9 hours however, it also may be appropriate for this age group to sleep 11 hours. Older adults (26-64) are also recommended to sleep 7-9 hours, however it may be appropriate for this group to sleep 10 hours.

If you are not waking up refreshed or regularly feel tired and sleepy during the day (or when you should be awake and alert) it is helpful to see how you respond to different amounts of sleep. Try sleeping an extra hour or more each night for at least two weeks. If you do not feel any better see your doctor as soon as possible. Information about your day to day activities including sleep habits can help your doctor identify the underlying cause/s. The National Sleep Foundation (USA) has a great sleep diary you can use to track your sleep and daily activities. Click here to check it out.

6. Jun, 2017

A number of people that completed our Sleep Health in Patients with Sleep Disorders Survey have said that keeping active is an excellent way of helping them manage their condition however the overwhelming urge to sleep impacts on motivation and therefore their ability to exercise. Others have expressed concern about their general health and wellbeing including weight gain and the impact being inactive has on their health and therefore their ability to manage their sleep disorder symptoms. People have also said that they believe they would benefit from professional diet and fitness advice however the cost of a personal trainer/health coach is prohibiting.

Do you think a personal health coach that provided you with a personally designed diet and fitness program, and who worked directly with you (similar to a personal trainer) would help you manage your sleep disorder/s?

CLICK ON THE LINK TO ANSWER http://bit.ly/2rZnVpU

 

24. May, 2017

Are you considering enrolling in University, preparing for a new study period or are already in the throes of studying? Did you know that all Australian universities have disability services that can provide ongoing support for students with a disability?

The first thing you need to do is let your universities disability services know that you have a disability. It’s best to do this when you enroll. If you didn’t, make an appointment with a Disability Advisor as soon as possible.

What kind of support do they offer?
Each university offers its own unique service however in general if your studies are affected by a disability, learning disorder, injury or chronic illness, Disability Services can provide assistance, advocacy, and reasonable academic adjustments.

Don’t have a disability yourself however you are the primary carer of someone that does? Most Universities have programs that extend their support to primary carers. Swinburne's AccessAbility Services is one example. They work with students living with a disability as well as those with primary carer responsibilities. They will negotiate a range of reasonable adjustments to ensure equal opportunity to access and participate in education at Swinburne. Contact your university to find out what services are available to you.

Below you will find links and other contact information for 35 Australian Universities. If you can’t find your university contact your student services.

Australian Catholic University
Equity and Disability Unit
Tel: +61 7 3623 7377
Email: carolyn.toonen@acu.edu.au
Web: http://www.acu.edu.au/student_experience/support_services/disability_services

Australian National University
http://www.anu.edu.au/students/information-for/students-with-a-disability

Bond University
Tel: +61 7 5595 4002 (Mon-Thurs)

Email: disabilitysupport@bond.edu.au
Web: https://bond.edu.au/current-students/services-support/services/disability

Charles Darwin University
Office of Student Administration and Equity Services

Tel: +61 8 8946 6288
Fax: +61 8 8946 6654
Email: kerrie.coulter@cdu.edu.au
Web: www.cdu.edu.au/equity-services/disability-services

Charles Sturt University
http://futurestudents.csu.edu.au/unilife/support/disability-support

Curtin University
Disability Services

Tel: +61 8 9266 7850
Email: disabilityservices@curtin.edu.au

Deakin University
http://www.deakin.edu.au/students/health-and-wellbeing/disability-support

Flinders University
Disability Advisor
Tel: 8201 2118

Email: disability@flinders.edu.au
Web: http://www.flinders.edu.au/current-students/healthandcounselling/disabilities.cfm

Griffith University
Tel: +61 7 3382 1159
Fax: +61 7 3382 1103
Email: disability-oua@griffith.edu.au
Web: www.griffith.edu.au/student-services/diversity-and-inclusion/students-with-disabilities

La Trobe University
Equality and Diversity Centre

Tel: +61 3 9479 2900
Email: equity@latrobe.edu.au
Web:  http://www.latrobe.edu.au/students/wellbeing/studying-with-a-disability

Macquarie University
Disability Support Unit

Tel: +61 2 9850 7497
Fax: +61 2 9850 6063
Email: campuswellbeing@mq.edu.au
Web: mq.edu.au/disability

Monash University
https://www.education.gov.au/higher-education-disability-support-programme

Murdoch University
OUA Liaison Team

Tel: (08) 9360 6084
Email: equity@murdoch.edu.au
Web: https://our.murdoch.edu.au/Student-life/Health-and-happiness/Disability-services/

Open Universities:
OUA Disability Contact Officer
Email: disability@open.edu.au

Web: https://www.open.edu.au/student-admin-and-support/student-support-services/disability-support

Queensland University of Technology

Disability Services
Email: student.disability@qut.edu.au

https://www.qut.edu.au/study/student-life/student-support/disability-support

RMIT University
Equitable Learning Services

Tel: +61 3 9925 1089
Email: els@rmit.edu.au
Web: www.rmit.edu.au/equitable

Southern Cross University
http://scu.edu.au/equity/index.php/74/

Swinburne University
AccessAbility Services

Tel: +61 3 9214 8513 (Mon-Thurs)
Email: accessability@swin.edu.au
Web: www.swin.edu.au/accessability/

University of Adelaide
Tel: 8313 5962
Email: disability@adelaide.edu.au
Web: https://www.adelaide.edu.au/disability/

University of Canberra
http://www.canberra.edu.au/current-students/canberra-students/student-support/inclusion-engagement/support-for-students-with-disability

University of Melbourne
http://services.unimelb.edu.au/student-equity/home

University of Newcastle
Email: student-disability@newcastle.edu.au

Web: https://www.newcastle.edu.au/current-students/support/disability-support

University of New England
Student Disability Support

Tel: +61 2 6773 2897
Fax: +61 2 6773 4400
Email: tony.woods@une.edu.au
Web: www.une.edu.au/current-students/support/student-support/disability-support/disability-support-1

University of NSW
https://student.unsw.edu.au/disability

University of Queensland
Disability Advisor, Student Services

Tel: +61 (7) 3365 1704
Email: disability@uq.edu.au
Web: http://www.uq.edu.au/student-services/disability

University of South Australia
Disability Services

Tel: 1300 657 122 or +61 8 8302 2330
Fax: +61 8 8302 2363
Email: disability@unisa.edu.au
Web: www.unisa.edu.au/Student-Life/Support-services/Disability-Services/

University of Southern Queensland
https://www.usq.edu.au/current-students/services/disability

University of the Sunshine Coast
http://www.usc.edu.au/learn/student-support/disability-and-equity

University of Sydney
http://sydney.edu.au/study/academic-support/disability-support.html

University of Tasmania
http://www.utas.edu.au/students/shw/disability

University of Technology Sydney
Accessibility Services

Tel: +61 2 9514 1177
Email: accessibility@uts.edu.au
Web: https://www.uts.edu.au/current-students/students-with-accessibility-requirements/accessibility-service

University of Western Australia
UniAcess - UWA's Disability Office

Tel: +61 8 6488 2423
Fax: +61 8 6488 1119
Email: uniaccess@uwa.edu.au
Web: www.transition.uwa.edu.au/welcome/disability_office

University of Western Sydney
https://www.westernsydney.edu.au/currentstudents/current_students/services_and_facilities/disability_service

University of Wollongong
Tel: 02 4221 3445
Fax: 02 4221 5667
Email: disability_services@uow.edu.au
Web: https://www.uow.edu.au/student/disability/index.html

Victoria University
https://www.vu.edu.au/current-students/campus-life/advice-support/disability-support

 Image credit: Swinburne University AccessAbility Services logo

9. May, 2017

Over the past four decades, Prof. Michel Billiard has published numerous articles on narcolepsy with cataplexy and other hypersomnias of central origin, particularly Kleine-Levin Syndrome and Idiopathic hypersomnia. I spoke with Prof Billiard for the tribute “Bedřich Roth, His Life’s Work and the 35th anniversary of the book “Narcolepsy and Hypersomnia”  that I wrote for the Idiopathic Hypersomnia Awareness Week 2015. The theme for this year’s awareness week is research so I’m looking forward to speaking with him (and other researchers) again.

In this interview with Revista de Neurología for the 8th European Narcolepsy Day 2017 Prof. Billiard talks about the aetiology of narcolepsy with cataplexy, his thoughts on new treatments in Narcolepsy such as Sodium Oxybate (Xyrem) and Pitolisant (Wakix) and also his study using a hierarchical cluster analysis (Sleep Med, 2015). This study was based on patients with narcolepsy and idiopathic hypersomnia and it showed idiopathic hypersomnia with long sleep is distinct and unique and is therefore an independent sleep disorder of idiopathic hypersomnia without long sleep. The study also showed, which has been the long held belief of many researchers, that the clinical features of idiopathic hypersomnia without long sleep are more closely related to those found in narcolepsy without cataplexy (Type 2 Narcolepsy) and that those two disorders should be merged into one single condition.

Click here to read the interview. 



Who is Prof. Michel Billiard?

Prof Billiard is Honorary Professor of Neurology at the School of Medicine, University Montpellier I and Honorary Chair of the Department of Neurology, Gui de Chauliac Hospital, Montpellier (France). He has been President of the European Sleep Research Society (1996-2000) and is the first Honorary member of the EU-NN, elected in the last European Narcolepsy Day in Helsinki (March 2016). He was the instigator of the European Collaborative Project on Genetic Susceptibility to Narcolepsy (1995). Over the past four decades, he has published numerous articles on narcolepsy with cataplexy and other hypersomnias of central origin, particularly Kleine-Levin Syndrome and Idiopathic hypersomnia.

10. Mar, 2017

The 2017 World Sleep Day slogan is, “Sleep Soundly, Nurture Life.” This focus is purposefully broad in meaning, surrounding the message that quality of life with a sleep disorder can be improved, but recognition of sleep’s importance for overall health and well-being must come first. Though most sleep disorders are preventable or treatable, less than one-third of sufferers seek professional help.

Sleep Impacting Disease

Sleep has a health impact on the prevalence of natural diseases. Current research suggests stroke and heart failure are more prevalent in people living with Obstructive Sleep Apnea (OSA). World Sleep Day aims to inform the world about the importance of treating even mild sleep disorders. Individuals who struggle to get an entire night’s sleep without any interruptions experience higher rates of high blood pressure, diabetes, obesity and other chronic illnesses.

Sleep Impacting Psychological Disorders

Studies have shown that people with poor quality sleep suffer from more symptoms of anxiety and depression than people without poor quality sleep. Research has also revealed that individuals with depression experienced lower quality sleep than those with no history of depression. Research is underway to better understand the link between sleep quality and mental health.

General FACTS

  • Consistently sleeping for more than nine hours or fewer than eight hours a day has a negative impact on physiological, psychological and cognitive functions.
  • Breathing regularly during sleep is critical to maintain well-being and health. Persistent interruption of the breathing function during sleep is called sleep apnea. This is a pervasive and common disorder that affects 4% of men and 2% of women.
  • Obstructive sleep apnea causes daytime sleepiness and fatigue and significantly impacts health and well-being. The drop in oxygen that occurs when breathing stops puts a strain on the heart and can lead to a number of serious health conditions including hypertension, heart disease, stroke, and diabetes.
  • Lack of sleep or poor quality sleep is known to have a significant negative impact on our health in the long and short term. Next day effects of poor quality sleep include a negative impact on our attention span, memory recall and learning. Longer term effects are being studied, but poor quality sleep or sleep deprivation has been associated with significant health problems, such as obesity, diabetes, weakened immune systems and even some cancer.
  • Lack of sleep is related to many psychological conditions such as depression, anxiety and psychosis.
  • Quality sleep is crucial to ensure good health and quality of life.
  • Three elements of good quality sleep are:
    • Duration: The length of sleep should be sufficient for the sleeper to be rested and alert the following day.
    • Continuity: Sleep periods should be seamless without fragmentation.
    • Depth: Sleep should be deep enough to be restorative.

Known Consequences: Some Statistics

  • A US study has estimated the annual costs of insomnia to be between $92.5 billion and $107.5 billion. The annual economic burden of undiagnosed sleep apnea among U.S. adults is approximately $149.6 billion.
  • Patients with Idiopathic Hypersomnia and Narcolepsy have twice as many total annual medication transactions and an overall significantly higher average of medical services costs than those without the sleep disorders.
  • Because of the severity of Idiopathic Hypersomnia and Narcolepsy, patients also often bear indirect costs related to their increased risk of accidents, higher likelihood of unemployment, and loss of academic opportunities.
  • The most common and most destructive symptom of Restless Legs Syndrome (RLS) is sleep disturbance. More than two-thirds of RLS patients experience serious insomnia, waking up several times per night is typical for RLS patients. RLS also disrupts rest during waking hours, such as when the patient is sitting or relaxing. Thus, whether awake or asleep, patients with RLS find little opportunity for the general restorative behaviours necessary for healthy human functioning, resulting in high rates of comorbidities including depression, anxiety, and hypertension.
  • 71,000 people suffer injuries every year due to sleep-related accidents.
  • 1,550 people die because of sleep-related accidents.

If you suffer from poor quality/disturbed sleep, wake up feeling unrefreshed or have trouble staying awaking during the day see your doctor, you may have a sleep disorder. Many sleep disturbances and sleep disorders can be managed with the right treatment and perhaps sensible lifestyle adjustments.