IH Treatment Options
The management of Idiopathic Hypersomnia (IH) continues to change and evolve
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Many patients still suffer from IH symptoms despite being treated1-3
- In a 2014 internet survey of 129 patients self-identified as having IH, overall medication effectiveness was rated only a 5.4 out of 101
In a separate study of an online registry that collected patient data from June 2016 through May 20182*:
- Patients with IH were still experiencing daily symptoms while on treatment (nearly two-thirds, 64.1%, still experienced )
In a retrospective review of the clinical outcomes of 85 patients with IH being treated with various therapies from 1996 through 20073:
- More than one-third of these patients (35%) described poor or partial response
*Data were obtained from 563 respondents from the Hypersomnia Foundation's online patient registry questionnaire, of which 468 had IH. Participants were asked about the frequency of symptoms when symptoms were at their worst.2
For many, life with IH means relying on different coping mechanisms4
Some patients with IH nap in order to get through the day, often for longer than 60 minutes2,5
- Many consider their naps to be unrefreshing and experience severe postnap , so refrain from napping despite their sleepiness
- In a study of an online registry*, intentional daily naps were reported by only half of patients with IH, perhaps reflecting their tendency to be long and nonrestorative
Some patients living with IH maintain a hyperactive state to help resist their feeling of sleepiness. This may include6:
- Increased motor activity (standing or walking instead of sitting)
- Speaking continuously to help maintain alertness
- Performing several activities at the same time (writing while listening to music, listening to an audiobook when doing chores)
Patients report often relying on nonpharmacologic strategies to help keep them awake, such as1†:
- Caffeine
- Nicotine
- Chewing gum
- Temperature manipulations
- Exercise
*Data were obtained from 563 respondents from the Hypersomnia Foundation's online patient registry questionnaire, of which 468 had IH. Participants were asked about the frequency of symptoms when symptoms were at their worst.2
†Based on 371 survey respondents who identified as having either narcolepsy or IH, 97.6% of respondents reported currently experiencing significant excessive daytime sleepiness (EDS) and the majority (83.3%) reported the use of medication to manage symptoms.1
There's an FDA-approved treatment for IH that may be right for your patients.
While good sleep hygiene and behavior modification are conventional parts of IH management, pharmacological treatment
may be needed for patients living with IH7,8
References:
- Neikrug AB, Crawford MR, Ong JC. Behavioral sleep medicine services for hypersomnia disorders: a survey study. Behav Sleep Med. 2017;15(2):158-171.
- Trotti LM, Ong JC, Plante DT, Murray CF, King R, Bliwise DL. Disease symptomatology and response to treatment in people with idiopathic hypersomnia: initial data from the Hypersomnia Foundation registry. Sleep Med. 2020;75:343-349.
- Ali M, Auger RR, Slocumb NL, Morgenthaler TI. Idiopathic hypersomnia: clinical features and response to treatment. J Clin Sleep Med. 2009;5(6):562-568.
- Trotti LM. Idiopathic hypersomnia. Sleep Med Clin. 2017;12(3):331-344.
- Arnulf I, Leu-Semenescu S, Dodet P. Precision medicine for idiopathic hypersomnia. Sleep Med Clin. 2019;14(3):333-350.
- Vernet C, Leu-Semenescu S, Buzare MA, Arnulf I. Subjective symptoms in idiopathic hypersomnia: beyond excessive sleepiness. J Sleep Res. 2010;19(4):525-534.
- Masri TJ, Gonzales CG, Kushida CA. Idiopathic hypersomnia. Sleep Med Clin. 2012;283-289.
- Schinkelshoek MS, Fronczek R, Lammers GJ. Update on the treatment of idiopathic hypersomnia. Curr Sleep Med Rep. 2019;5:207-214.