Heather’s Story

By November 15, 2017 March 12th, 2020 Patient, Prior Resection, Written Stories

My name is Heather. I am 28 years old and I live in Fayetteville, North Carolina.

I had my first seizure during my senior year of high school. I think I was in trigonometry class. I remember talking to a friend who was sitting beside me. Suddenly, I felt a really strong, frightening sense of déjà vu. I had a metallic taste in my mouth and butterflies in my stomach. Then I lost consciousness and had a seizure.

I didn’t realize it until later, but the déjà vu and the other symptoms that preceded my seizure were actually my aura. Of course, at the time, I didn’t even know what an aura was!

The school contacted my parents and I went to the local ER. I was transferred from there to UNC Medical Center at Chapel Hill, which is where I was officially diagnosed with epilepsy and told I was having partial complex seizures.

I began taking Lamictal® to control my seizures, but the medicine only helped temporarily. Soon, the seizures started coming more frequently. The doctors kept increasing the dosage on my medication, but nevertheless, I was losing consciousness and having 15 to 20 seizures per day.

I started college at East Carolina University in Greenville, but with the seizures getting out of control, I had to drop out after just a few months and come back home to live with my parents again. Around that time, I had my driver’s license suspended too.

It was pretty frustrating. I would feel kind of healthy for a while and then suddenly my body would go through stages where the seizures were hitting me all the time.

The stress and the high doses of medication caused me to gain weight, which made me insecure and depressed. It was really stressful not being in control of my body. At one point, I was taking four medications, including Keppra®, which people said made me mean and moody. I did feel like I had a lot of anger in me when I was on that drug.

In 2012, I had my son Jaxon. The seizures were very bad during my pregnancy. That’s when my neurologist told me he wanted to remove my temporal lobe, since that’s where the EEGs were showing my seizures taking place.

I went through testing and had the surgery in December 2013. When they went in and placed electrodes to make sure they were cutting in exactly the right spot, the neurosurgeon realized that I was actually having additional seizures in both my occipital and frontal lobes that the EEGs had never picked up. They could not cut out all the places in brain where the seizures were originating, because that would cause too much damage to my memory, so the surgeon decided just to remove the temporal lobe in the hopes that at least my seizures would become less frequent.

The surgery did help to some extent. Instead of having seizures 15 to 20 times a day, I would have maybe 7 to 10 seizures per day. That was better, but the seizures were still happening frequently. They would normally last a couple of minutes, after which I’d feel disoriented for 15 or 20 seconds. I would also get a really bad headache after every seizure, so I was in a lot of pain most days.

My neurologist and neurosurgeon told me about the RNS System, which they believed was the best option for controlling the seizures originating in my frontal lobe. I had the surgery to implant the device in March 2015.

It really was not a difficult decision to get the RNS System. I talked about it a lot with my mom, but ultimately it came down to the fact that I had so much trust for my neurosurgeon and my neurologist, and they both thought it was the best thing to do.

The surgery to implant the RNS System was pretty easy and comfortable. The recovery was fine too. I didn’t have a lot of pain or anything like that.

With the RNS System in place, the seizures have become much less frequent. In fact, typically I’ll just get the aura now, but I won’t go completely unconscious or have an actual seizure.

Before I got the RNS System, I had to deal with multiple seizures every day. Now, I typically have only 5 or 6 auras per month. This can fluctuate according to my menstrual cycle, but sometimes I’ll go a week or two without having any auras at all.

I think my RNS System’s performance is improving over time. I have been using the magnet right after my aura’s to flag the episode. This has been really helpful in follow up appointments with my neurologist, because the collected data helps my neurologist more precisely tailor the device to my personal seizure activity.

My life is a lot better now. I feel a lot more comfortable. I know what it feels like if my aura is coming on, but sometimes my aura is so light now that I’ll just have the sensation of a smell or taste, and that will be the only symptom.

I was on four medications before I got the RNS System, but now I’m down to just the Lamictal®. Getting off the drugs has definitely given me more energy. Before, I used to take my medicines at 10 a.m. and feel utterly exhausted an hour later. Now, I have the energy to go to the gym with my neighbor, push my son to the local park in his stroller or take three-mile walks in the evening. All this activity has helped me lose weight, which makes me feel really good about myself.

One of the greatest changes with the RNS System is that my 4-year-old son feels more comfortable being alone with me.

At one time, it used to break my heart when he said that he didn’t want to be alone with me, because he was afraid I would have a seizure. My life depended on him, and I had to teach him how to call 911. Now he feels less worried, which makes me less anxious too.

I learned that heat is a seizure trigger for me. In May 2017, I went to visit my parents over the Memorial Day weekend. The air conditioning had gone out and since it was a holiday, they were unable to have someone fix it right away, so it was very hot in the house. As a result, I had a big tonic-clonic seizure in my sleep. My parents had to call 911. The paramedics gave me Ativan® and then monitored me for a couple of hours.

Ever since then, I’ve been careful to make sure I do not overheat. For instance, during the summer, I’ll do my daily walks at night when it’s cooler. And if someone doesn’t have air conditioning, I know I can’t stay overnight at their home. By following these precautions, I haven’t had any other tonic-clonic seizures since. (Before I had the RNS System, I was having around two or three tonic-clonic seizures per year.)

I am more outgoing now. I feel more fearless and independent.
Before I got the RNS System, I would have said that epilepsy controlled my life. It made me insecure and embarrassed. Now, I don’t feel those bad feelings anymore. I feel like the RNS System has helped me to become myself again.

Published on: November 15, 2017

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This represents the experience of individual(s) who have used the RNS System.  Individual results will vary.