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Things You Should Know About the Rare Epilepsies and Sleep

Updated: Mar 23, 2022


March 13-19 marks Sleep Awareness Week 2022! Sleep Awareness Week celebrates and encourages healthy sleep. For those touched by the rare epilepsies, we appreciate the many ways seizures and sleep are interconnected. For some people, lack of sleep can trigger seizures. Others may experience seizures during sleep or the night. For others you may have a nocturnal epilepsy diagnosis – a specific seizure disorder where seizures occur while sleeping. And there are countless variations of these not to mention the impact of medications and stress on sleep as well as the impacts of poor sleep for caregivers.

During Sleep Awareness Week, get educated:


  • Getting a poor night’s sleep increases the likelihood and severity of a seizure in a person with epilepsy due to imbalances of electrical activity in the brain.

  • 20% of people with epilepsy solely have nocturnal seizures (seizures while sleeping). 35% have seizures both while awake and asleep. 30-60% of children with epilepsy have a sleeping disorder.

  • Common and rare conditions most prone to nocturnal seizures include Juvenile Myoclonic Epilepsy (JME), Benign Rolandic, Landau-Kleffner Syndrome, Frontal Lobe Epilepsy, Awakening Tonic Clonic, Nocturnal Frontal Lobe Epilepsy (NFLE), Benign Epilepsy with Centrotemporal Spikes (BECTS), Panayiotopoulos Syndrome, Sleep-related Hypermotor Epilepsy *SHE), Electrical Status Epilepticus in Sleep (ESES), Autosomal dominant nocturnal frontal lobe epilepsy (ADNFLE), Epileptic Encephalopathy with Continuous Spike and Wave During Sleep (ESES or CSWS) and Lennox-Gastaut Syndrome.

  • Loss of bladder control, tongue biting, feeling drowsy, lack of concentration, increased daytime seizures and involuntary muscle movements may all be signs of nocturnal seizures.

  • Anti-epileptic drugs (AEDs) sometimes lead to better sleep due to the elongation of deep sleep, but in some cases, it can cause a person to have poorer sleep.


Takeaways:

If you have severe, rare or refractory epilepsy, ask your doctor if you should have an EEG during sleep.


What precautions do you take to increase your safety during sleep?


Some Resources about Sleep and Epilepsy:



Find your Rare Epilepsy Community

If you are diagnosed with a rare epilepsy, visit Rare Epilepsy Network’s 80+ members to diagnosis specific information, education, support, and community.


If you are aware of other valued resources or to provide updates or correct errors, please contact: info@rareepilepsynetwork.org.


Disclaimer: All resources are provided as a courtesy. We are not endorsing any organizations or providing medical advice.


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