Fatal insomnia

Fatal insomnia
Longitudinal comparison of 18F-FDG PET/MRI in brain in a patient with fatal insomnia, demonstrating normal brain parenchyma on MRI, but prominent hypometabolism of the thalamus
SpecialtyNeurology, psychiatry, sleep medicine, neuropathology
SymptomsProgressive insomnia, ataxia, double vision, weight loss, high blood pressure, excessive sweating
ComplicationsPermanent state of hypnagogia later in the illness
Usual onset45–50 years old
TypesFatal familial insomnia, sporadic fatal insomnia
CausesGenetic mutation, sporadic form (very rare)
Risk factorsFamily history
Diagnostic methodSuspected based on symptoms, supported by sleep study, PET scan and genetic testing (if familial form is suspected)
Differential diagnosisAlzheimer's disease, frontotemporal dementia, other transmissible spongiform encephalopathies
PreventionNone
TreatmentSupportive care
MedicationNone
PrognosisInvariably fatal
Frequency70 families worldwide are known to carry the gene associated with the disease, 37 sporadic cases diagnosed (as of 20 September 2022)
Deaths<1 per year

Fatal insomnia is a neurodegenerative disease that results in trouble sleeping as its hallmark symptom. The majority of cases are familial (fatal familial insomnia [FFI]), stemming from a mutation in the PRNP gene, with the remainder of cases occurring sporadically (sporadic fatal insomnia [sFI]). The problems with sleeping typically start out gradually and worsen over time. Eventually, the patient will succumb to total insomnia (agrypnia excitata), most often leading to other symptoms such as speech problems, coordination problems, and dementia. It results in death within a few months to a few years, and there is no known disease-modifying treatment.