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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Is Having 4 Seizures A Week A Lot? And Does Anyone Have A Neruopace And Having Side Effects?

A MyEpilepsyTeam Member asked a question đź’­
Seattle, WA
September 14
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A MyEpilepsyTeam Member

I use to average 1 seizure a day or 30 seizures a month. What ever amount of seizures you have , keep in mind that there are people out there that may have many seizures a day . Those people usually have care givers ,watching them 24/7 . Then there are the families of the person with Epilepsy, put into a home care facility ( like a nursing home ) .

September 14 (edited)
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
I have had a NeuroPace (RNS) for 5 or 6 years. I have never had any side effects from it. Before I had the RNS I had so many EEG’s, including a surgical one, where the doctors didn’t get much information. The RNS not only helps control seizures but it also records my brain activity while I’m having a seizure. Whenever I have a seizure or aura my mom will touch my head with a magnet. That will mark that spot important for my doctors. Every night before I go to bed I turn on the RNS monitor and place a wand on my head. It will take a minute or 2 for it to gather up any seizure information. When it’s finished I hit “Send” and all of the information is sent to my doctors. When I go see my neurologist and the RNS Team they get out a monitor and can see everywhere I had a seizure, aura or used the magnet. Most of the lines are smooth but when they go to a spot where I had a seizure the lines get bouncy ——-wwwwww——-. Since I do still have seizures the doctors have risen the amps on my RNS multiple times. To do that they just place a wand on my head and do some adjusting on their monitor. I never feel anything.

September 14
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A MyEpilepsyTeam Member

Having 4 seizures per week would typically be considered a high frequency of seizures. As the study in source 4 showed, people who had 3 or more generalized seizures per year were categorized as high risk for SUDEP (sudden unexpected death in epilepsy). So 4 seizures per week, or over 200 per year, would be very high risk Show Full Answer

Having 4 seizures per week would typically be considered a high frequency of seizures. As the study in source 4 showed, people who had 3 or more generalized seizures per year were categorized as high risk for SUDEP (sudden unexpected death in epilepsy). So 4 seizures per week, or over 200 per year, would be very high risk. Regarding side effects from neurostimulation devices like NeuroPace, some members on MyEpilepsyTeam have shared their experiences. As with any treatment, there is potential for side effects and those need to be weighed against the benefits. It's best to discuss your specific situation with your health care provider.

September 14
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