A Novel Dietary Approach to Manage Symptoms of Narcolepsy and Idiopathic Hypersomnia
The aim of this project is to learn about how a change in diet will affect sleepiness, quality of life and metabolic health in people living with narcolepsy and idiopathic hypersomnia. The dietary changes we will be testing are well researched and safe in a wide range of patient groups (such as in obesity, type one and two diabetes, cancer and dysfunction related to the nervous system) but has not been researched in conditions of hypersomnolence such as narcolepsy and idiopathic hypersomnia. It is important to test adjunct therapies and lifestyle changes such as dietary interventions to ensure that people living with hypersomnolence have a range of options in addition to medications, to improve their health. If effective, this project will be tested in more people and may become a part of routine patient care. These dietary approaches have been shown to improve health and quality of life in people living with chronic pain, neurological conditions such as epilepsy and have been shown to be safe in these populations as well as people living with type one diabetes. This is a new area of research for people living with hypersomnolence.
• Evidence (from multiple sleep latency test, 24-hour polysomnography, or actigraphy) of diagnosis of narcolepsy type 1, narcolepsy type 2 or idiopathic hypersomnia that meets ICSD-3 criteria.
• For the NT1 subtype, patients must have been screened positive for the HLA DQB10602 genotype.
• Body mass index \>18.5 kg/m2
• 18 years or over
• Be willing to be involved in dietary change that may include animal protein and fat.
• Be willing to monitor ketones via finger-prick and urinary dipstick.
• Habitual diet is a standard diet consuming a moderate or high carbohydrate level (defined for the study as above 130g carbohydrate/day).
• Willingness to provide informed consent and willingness to participate and comply with the study requirements.
• Access to a computer, laptop, tablet, or smartphone and stable internet access.
• Proficient comprehension of English language (able to independently read information sheet) and availability of a support person during consultations if English comprehension is challenged.