Epilepsy Insights | What I Learned From My RNS System

What the RNS System revealed

I 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.

How data helped Carolyn

My 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.

What was revealed about location

My doctor could see that most of my seizures were coming from a specific part of my brain.

Family visits and seizures

Stress is a seizure trigger for me. My doctor could see a lot more abnormal brain activity when my mother in law came to visit!

How activity affected seizures

Meditation and long, quiet walks help minimize my seizure triggers.

A seizure trigger is identified

I 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.

Why beverage choice mattered

Orange juice was a seizure trigger for me.

Doctor got the data needed

The 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.

Emotions from seeing brain waves

A 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.

A surprising seizure pattern

Thanks 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.

How caffeine affected seizures

My doctor could see from the data that I had more seizures when I drank a lot of caffeine, so I cut back.

How data helped Eric

Very 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.

Surprised by data

My 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.

No longer feeling alone

I 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.

How exhaustion affected seizures

Exhaustion was a seizure trigger for me.

How exercise affected seizures

Certain types of exercise may cause my seizures, so I adjusted my physical activity.

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.

How weather affected seizures

Heat stress was a seizure trigger for me, so I decided to move to a city with cooler weather!

Fine tuning treatment with data

One 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.