Living with IH in Australia Survey
This survey is designed to find out what living with Idiopathic Hypersomnia is like in Australia. We want to know people's experiences including the challenges they face. The information this survey collects will help us with our advocacy, education and awareness initiatives. Therefore the more information we have the better we will be able to assist our community.

The survey is completely anonymous. You can answer freely. We have no way of knowing who you are. That said, Hypersomnolence Australia is committed to ensuring your privacy at all times. We have a privacy policy addressing issues related to the use, collection, security and access of personal information that can be viewed on our website. https://www.hypersomnolenceaustralia.org.au/privacypolicy

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1. What state/territory do you live in? *
2. How old are you? *
3. Approximately what age were you when you first noticed Idiopathic Hypersomnia symptoms? *
4. What age were you when you were diagnosed with Idiopathic Hypersomnia? *
5. Who diagnosed you with Idiopathic Hypersomnia? *
6. What is the name of the doctor that diagnosed you with Idiopathic Hypersomnia? *
This helps us get an idea of who the doctors are in Australia that have had at least one patient with IH.
7. Would you say the doctor that diagnosed you had a good understanding of Idiopathic Hypersomnia? *
8. Did the doctor that diagnosed you with IH do a good job of explaining it to you, including medication options and possible side effects or contraindications etc? *
9. If your current sleep specialist (or neurologist etc) is different to the one that diagnosed you with Idiopathic Hypersomnia, what is the name of your current doctor? *
This helps us get an idea of who the doctors are in Australia that have had at least one patient with IH. Write N/A if it is the same as the doctor that diagnosed you.
10. Would you say that your current doctor has a good understanding of Idiopathic Hypersomnia? *
11. Has your current doctor done a good job of explaining IH to you including medication options and possible side effects and contradictions etc? *
12. Please feel free to share with us your experiences with the doctors you have seen regarding Idiopathic Hypersomnia.
13. Which of the following symptoms do you regularly experience if you do not take medication (prescribed for IH). *
If you sleep excessively please only choose ONE of the first two choices. If you don't sleep excessively (without medication) either over night or over a 24hr period just tick the symptoms you do experience.
Required
14. Have you also been diagnosed with another sleep disorder? *
Before marking "other" and adding another condition please check it is not already listed.
Required
15. What medication/s do you currently take for Idiopathic Hypersomnia? *
Before marking "other" and adding another medication please check it is not already listed.
Required
16. What is the current dose of your medication/medications?
17. What side effects do you experience with the medication you are currently taking for Idiopathic Hypersomnia? *
Please only tell us about the side effects you *know* are caused by the medication/s you take for IH ie: if you stop the medication the side effects go away
Required
18. What medication/s have you tried in the past for Idiopathic Hypersomnia? *
Before marking "other" and adding another medication please check it is not already listed.
Required
19. What was the main reasons for discontinuing this medication? *
Before marking "other" and adding another reason please check it is not already listed.
Required
20. What side effects have you experienced with any of the medications you have tried in the past for Idiopathic Hypersomnia (as mentioned in question 18)? *
Please only tell us about the side effects you *know* were caused by the medication/s you took for IH ie: when you stopped the medication the side effects went away
Required
21. Please feel free to tell us about your negative experiences with any of the medications you have been prescribed for Idiopathic Hypersomnia.
22. What Idiopathic Hypersomnia medication do you access via the (Pharmaceutical Benefits Scheme) PBS? *
Before marking "other" and adding another medication please check it is not already listed.
Required
23. What Idiopathic Hypersomnia medication/s do you or have you had to access via a private script? (including the Special Access Scheme) *
Before marking "other" and adding another medication please check it is not already listed.
Required
24. Why do you (or did you) access the above medication/s via a private script? *
Before marking "other" please check that the reason is not already listed. If you don't know or can't remember check 'other'
Required
25. What other medical conditions do you have? *
Before marking "other" and adding a condition please check that it is not already listed.
Required
26. When you are not taking your medications for Idiopathic Hypersomnia, what symptoms do you *regularly* experience that are NOT associated with other medical conditions (including other sleep disorders) you have? *
Required
27. What came first, the other medical condition/s (including other sleep disorders) or Idiopathic Hypersomnia? *
28. In addition to the medication you take for Idiopathic Hypersomnia do you regularly take any of the following medication as well (for other sleep disorder/s or other medical conditions)? *
Please note the medications listed under each class are examples only, there may be many others.
Required
29. If you have Sleep Apnea how is it treated?
If you use CPAP and a MAS device (at different times) tick which one you use the most
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30. If you have Sleep Apnea and use a CPAP, APAP or BiPAP/BPAP Machine how many hours a night do you usually use it?
Clear selection
31.  If you use a CPAP, APAP or BiPAP/BPAP Machine or Oral Appliance for Sleep Apnea how many nights a week do you use it?
Clear selection
32. Is there a history of diagnosed Idiopathic Hypersomnia or Narcolepsy in your family? *
33. Have you had a HLA gene test for narcolepsy? *
The specific genetic variant HLA-DQB1*0602 is found in more than 90% of patients with narcolepsy with cataplexy and in 40% of patients with narcolepsy without cataplexy. However, this subtype is also present in 12–38% of the general population.
34. Have you (or did you) decide not to have children or to limit how many you have due to your health? *
35. Do you work? *
Please note "outside the home" is a general term used to describe working at a job other than home duties and that is how it is interpreted here so if you actually work from home for an employer for example, please check the "outside the home" box that is appropriate to you. Also note: "work" means paid work or volunteering
36. Why do you work part time? (less than 38-40 hours per week)
Clear selection
37. Have you told your current employer you have Idiopathic Hypersomnia? *
38. Have you had a negative experience with past employers due to Idiopathic Hypersomnia? *
39. Please feel free to tell us why telling your current or past employer/s that you have Idiopathic Hypersomnia was not a positive experience.
40. Have you asked your school or university etc for accommodations for your Idiopathic Hypersomnia?
Clear selection
41. Please feel free to tell us about your experiences with your school or university etc regarding asking for accommodations for your Idiopathic Hypersomnia.
42. Do you receive a Disability Support Pension from Centrelink?   *
43. Do you receive assistance via the NDIS? *
44. On a scale from 1-10 how well would you say you are managing your IH symptoms and therefore life in general? 10 would be if you have implemented life style changes etc, learned to accept your limitations and are managing your symptoms to the best of your ability. 1 would be if you are at rock bottom and are in desperate need of help. *
45. What advice did your doctor give you about managing Idiopathic Hypersomnia? *
Required
46. What advice do you think is important for people to be given when they are diagnosed with Idiopathic Hypersomnia (and perhaps other sleep disorders) that you did NOT receive when you were diagnosed? *
Required
47. How did you come across Hypersomnolence Australia? *
48. Have you ever seen Hypersomnolence Australia's Idiopathic Hypersomnolence Brochure in a doctors surgery, hospital or sleep clinic? *
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49. Have you found the information on Hypersomnolence Australia's website and/or social media helpful? *
50. How important do you think it is that Hypersomnolence Australia is able to continue to do the work that it does? *
51. Hypersomnolence Australia receives no funding and charges no membership. Do you have any ideas on how we can raise funds? (Please keep in mind we are somewhat limited by volunteers)
If you have any ideas that you can help us implement please contact us at info@hypersomnolenceaustralia.org.au
52. The Idiopathic Hypersomnia & Narcolepsy Education Day is on in Brisbane on 10th April 2022. We can offer those not able to attend the event in person the ability to watch it via live video streaming (you will also receive a copy of the video so that you can watch it later) at the subsidised price of $110. Is this something that you would be interested in? *
53. What are your biggest concerns/hurdles you face or issues you think need addressing with regards to Idiopathic Hypersomnia?
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