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I’m diagnosed with idiopathic generalized tonic-clonic seizures. Now having them at night as I am falling asleep or just after falling asleep. Sometimes with no warning signs now after I got the DBS inserted. I am curious if anyone else experiences the same thing and would love to hear their story.
My medications are clonazepam, zonisamide, vimpat, folic acid and the DBS.

September 6 (edited)
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A MyEpilepsyTeam Member

I rarely seizure in my sleep. Mine usually happen during my waking hours

September 8
MyEpilepsyTeam

It's really common for people with epilepsy to experience seizures during that transition into sleep — you're definitely not alone in this. Nocturnal seizures tend to happen during the lighter, earlier stages of sleep, which lines up with what you're describing.

A MyEpilepsyTeam member shared: "Typically, a nocturnal seizure Show Full Answer

It's really common for people with epilepsy to experience seizures during that transition into sleep — you're definitely not alone in this. Nocturnal seizures tend to happen during the lighter, earlier stages of sleep, which lines up with what you're describing.

A MyEpilepsyTeam member shared: "Typically, a nocturnal seizure happens shortly after I fall asleep, but there have been times when it has been midnight. I usually wake up after the seizure from being drenched in sweat." The shift you've noticed — from morning seizures to nighttime ones as you've aged — is something others experience too. Seizure patterns can change over time, and factors like medication adjustments, the DBS, and sleep cycles all play a role.

One thing worth discussing with your neurologist is whether your current medication timing could be adjusted. Sometimes having a slightly higher dose before bed can help when seizures tend to cluster at night. Since you mentioned losing warning signs after your DBS insertion, that's definitely something to flag with your care team if you haven't already. Some helpful safety steps for nighttime include:

- Using a low bed frame or placing your mattress on the floor
- Putting a mat beside the bed in case of a fall
- Using a nighttime seizure monitor that detects movement
- Moving furniture away from the bed
- Mounting lamps on the wall instead of on a nightstand

September 6

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