The RNS System and diaries
I can be an active member in my seizure care by keeping a detailed diary for my doctors to correspond to what they see with my RNS System data.
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Brain activity tracking
Not alone
Seizure triggers
Tracking seizure location
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How caffeine affected seizuresMy doctor could see from the data that I had more seizures when I drank a lot of caffeine, so I cut back. -
Fine tuning treatment with dataOne of the fantastic things about the NeuroPace RNS system for us is the fact that it really becomes a personalized treatment device. Gabe’s neurologist met with him early on every week, and then every month, and every quarter. In each of those appointments he would read the data from the RNS System and then fine-tune the treatment. It's just a remarkable device and has had stunning effects with Gabe’s life.
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How exercise affected seizuresCertain types of exercise may cause my seizures, so I adjusted my physical activity. -
Emotions from seeing brain wavesA real revelation with RNS System was, I was able to look at my brain waves and see what was actually happening, seeing that inner part of myself, that was just incredible.
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No longer feeling aloneI think it’s amazing to have the RNS System because I am no longer dealing with epilepsy alone. It’s not just me and myself trying to explain what’s happening. My doctors can see it. It’s unbelievable.
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A surprising seizure patternThanks to the constant EEG monitoring that RNS performs, my doctor noticed a seizure pattern that resembled that of those present in some children. This allowed him to prescribe a medicine that is generally not prescribed to adults.
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Family visits and seizuresStress is a seizure trigger for me. My doctor could see a lot more abnormal brain activity when my mother in law came to visit! -
Doctor got the data neededThe data revealed that almost all of my seizures were coming from one side of my brain, so I went forward with brain surgery on that side per my doctor's recommendation. -
How diet affected seizuresHigh carb meals are seizure triggers for me, so I’ve adapted my diet. -
How exhaustion affected seizuresExhaustion was a seizure trigger for me. -
What was revealed about locationMy doctor could see that most of my seizures were coming from a specific part of my brain. -
The RNS System made me feel safeI feel safe exercising again knowing my doctors can see what’s happening in my brain. -
How sleep affected seizuresMore sleep meant fewer seizures, so I adjusted my sleep patterns. -
How weather affected seizuresHeat stress was a seizure trigger for me, so I decided to move to a city with cooler weather! -
How data helped EricVery soon after Eric’s epilepsy diagnosis it was determined that he was refractory, not responding to medications and ineligible for surgery. With information gathered from the RNS System, Eric was able to have a lobectomy and we were able to eradicate his tonic clonic seizures and he hasn’t had one now in six years.
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How data helped CarolynMy doctor and I reviewed my data from my RNS system and we realized that my anxiety, my stress, my depression had something to do with my seizures. Since then I started meditation, reiki and some other things to help me through my seizures and it’s wonderful.
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What the RNS System revealedI was having a lot of small unnoticeable seizures during the day, which is likely why I was struggling in school. Now, I’ve completed my master’s degree. -
Why beverage choice matteredOrange juice was a seizure trigger for me. -
The RNS System is on my teamI no longer feel alone in my seizure care. -
Surprised by dataMy neurologist had told me, “You're still having seizures.” I hadn't felt any of them. So I was very surprised that there was a lot of seizure activity. My device was picking them up and taking care of all of them. It's nice to know the RNS system is always looking out for me.
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A seizure trigger is identifiedI used to take my medication with orange juice and thanks to the RNS System, we found out that orange juice actually caused my auras to come on.
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How activity affected seizuresMeditation and long, quiet walks help minimize my seizure triggers.
