We are sometimes asked if Hypersomnolence Australia has a support group. The answer is no, unfortunately we do not have the resources to run a support group. However...
The Idiopathic Hypersomnia Australia Facebook group is a patient ran support and information sharing group specifically for
people living in Australia who have been diagnosed with Idiopathic Hypersomnia. The group isn’t affiliated with Hypersomnolence Australia so if you have any questions please contact the group admins Lisa and Anna, directly via Facebook.
While there can be some benefits in meeting people who experience the same medical condition as you we do recommend caution when participating in patient ran support groups for a few reasons. It is important to remember that no one really knows who is participating in online groups so the information shared may not be by someone who actually has the condition or disorder the support group represents. We are aware of a number of instances where people have joined various online hypersomnia groups with the intention of selling drugs to vulnerable people. You can read about rogue online drug suppliers here
Also with regards to Idiopathic Hypersomnia, because it is very often confused with “unspecified hypersomnia” (particularly in the United States) and hypersomnia associated with a particular cause eg: sleep apnea, other medical conditions and medications, it is not uncommon to find that many of the group members do not actually have Idiopathic Hypersomnia. This causes obvious confusion as well as an environment where people with Idiopathic Hypersomnia don’t feel they relate. Lisa and Anna do work hard to ensure that only those diagnosed with Idiopathic Hypersomnia join their group however it is important to remember that it is Facebook ie: they really have no way of knowing for sure.
Lisa and Anna expect everyone to read the group description before requesting to join. A copy of it is below (although please check the group description on Facebook as we may not have the most updated version). Lisa has also provided us with a copy of part of their pinned post (copy below, under the group description). All new group members are also expected to read the pinned post.
IH Australia Group Description:
This group exists for people living *only in the Australasia region who are diagnosed with Idiopathic Hypersomnia (also known as idiopathic hypersomnolence or IH for short).
This group is closed. That means only members of the group can see what you post. It is also a safe group where you can share with others who have a better ability to understand IH than most. The respect & privacy of our members is important, as such we do not tolerate spammers or trolls therefore we reserve the right to reconsider the membership of anyone that has joined our group under false pretenses.
For more information about Idiopathic Hypersomnia please visit:
The Hypersomnolence Australia website:
Or the Hypersomnolence Australia FB page:
*As the diagnostic criteria/guidelines, medications available and laws relating to health care & discrimination are not universal this group was set up *specifically* to discuss local matters that pertain to Australians living in Australia. Both the Neurological & Sleep Associations are "Australasian" and as there are no support groups for IH in NZ or the other countries in the neighbouring Australasian region (that we know of) we do our best to provide relevant support & information for people living in these countries. Most of our members are also members of various international hypersomnia groups so anyone from outside of the Australasian Region wanting to get a different perspective from people in different countries will be able to do so from these other groups.
Therefore please note; requests to join this group from anyone outside of Australiasia will not be considered.
Idiopathic Hypersomnia - Australia Group Admin.
Please note: The material and information contained in this group is for general information purposes only. All comments and posts are personal opinions and should not be taken as medical advice.
Religious proselytizing is not permitted in this group.
Idiopathic Hypersomnia Australia group pinned post:
Welcome! It can be difficult suffering from an invisible illness that many of our doctors do not even properly understand.
This group is here for people diagnosed with IH so that they can express themselves as openly and as honestly as they need to. We also hope to support our members and offer advice so that each of our journeys is not made any more difficult than they need to
Idiopathic Hypersomnia is a very real neurological disorder defined more than 40 years ago by renowned Czech Neurologist Bedrich Roth. Therefore IH is not a label that should be used by doctors for patients that they are unable to determine the cause of their EDS (excessive daytime sleepiness) although we know due to a lack of *educated doctors this does regularly happen. *less than 1% of all the sleep and respiratory doctors that treat non respiratory sleep disorders are actually properly educated to do so. There are many medical and/or mental conditions that cause EDS and not all of them can be easily excluded by standard or even complex medical tests so the cause of everyone’s symptoms is obviously not all the same, and more importantly it is obviously not all Idiopathic Hypersomnia.
Also, medications that promote wakefulness such as Modafinil and stimulants such as Dexamphetamine and Ritalin are either not approved under the PBS for anything except Narcolepsy/IH or are not approved under State & Territory restricted drug regulations for anything except Narcolepsy/IH & ADHD and we know doctors regularly diagnose IH (either due to ignorance or deliberately) to gain access to these medications for people with *known* causes of EDS. So although the group is open to people diagnosed with IH please keep in mind when reading the posts and comments that not everyone in our group actually has IH and of course due to the nature of online groups you cannot assume that everyone that says they have been diagnosed with IH actually has been diagnosed with the disorder.
Therefore there will be posts and comments in the group that you may not relate to. We have found this is usually because either you don’t have IH or the people contributing to the group do not have IH. If you are at all confused by anything you read in this group please do not hesitate to contact one of the admins.