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My 18-year-old Daughter Has Had Nocturnal, Tonic Clonic Seizures. Very Scary. Any Suggestions For Helping Her Stay Safe?

A MyEpilepsyTeam Member asked a question 💭
Ft Lauderdale, FL
January 16
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A MyEpilepsyTeam Member

I would recommend the Sami camera which you can use to monitor her seizures during the night.
It is brilliant and for us a game changer.
Think latest model is Sami 3

Best of luck

January 17
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
I’ve heard team member @A MyEpilepsyTeam Member , who has nocturnal seizures, to wear a mouth guard so she doesn’t bite her mouth.

January 16
A MyEpilepsyTeam Member

We just picked up the Neureka. It’s a device worn at night. It’s basically a watch and a ring. The device monitors vitals (heart rate and oxygen levels) and will call you if her vitals change or are suspect of having a seizure. It’s not cheap but less expensive than other more intrusive devices. Often, there are grants or other funding assistance to cover these things.

March 5
A MyEpilepsyTeam Member

Jill
Has her neurologist explained to you what nocturnal seizures are? and how common they are? A lot of people reading your post right now have to deal with them. It's understandable, you are worried about her health, and she is lucky to have you. But you also have to think about your health. It's not healthy to worry too much about what you can't control. So, I'd suggest that you have her neurologist explain in more detail how common it is to have seizures while sleeping. Myself, I had seventeen in one night while in the EMU. And I'm sure that there are many people here who deal with much more than that.

January 16 (edited)
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member , your welcome. Just do your your best.

January 17

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