• Your name and age? Nikki Pankow, age 48
• How old were you at diagnosis? 19 or 20.

Zanna: Tell me about how you first became aware of your seizures.

Nikki:  My parents said I would suddenly be zoning out and then talk or babble about nonsense. That was just the beginning. I was in several car accidents because of seizures also. I was driving on the sidewalk the last one and the police came. That’s when I lost my license and didn’t get it back till after my surgery.

Z: What is your type of epilepsy?

N: Partial absence seizures. I would be spacing out, detached, but I could continue doing random things like making pizza at my work. I would be having a seizure and start walking around in circles. I laugh about it now, but I was carrying a knife once, so it could be dangerous. After seizures I would always go right to sleep.

 

Z: How did you respond to your diagnosis? What was your initial reaction?

N: I was in denial; I couldn’t afford the meds and so I wouldn’t take them appropriately, I’d skip doses that I needed. I had a VNS implant when I’d been having seizures for a few years. You carry a magnet around with that device and I was supposed to use it when I felt the aura coming, but I didn’t use it properly. (VNS: Vagus Nerve Stimulator. A device surgically implanted under the skin on your chest, with a wire threaded up to the vagus nerve. Often called a “pacemaker for the brain”.)

Z:  How would you describe your typical seizure experience?

N: I would become totally detached from the world. I had them at work, and I wouldn’t know what was going on. My store manager yelled at me once when I didn’t help a customer properly, but I’d been seizing. A couple of close friends at work went to that manager and let him know he was wrong. Everyone knew, so they could help if needed. The seizures were happening daily and affected every part of my life! I’d run to the bathroom when I felt it coming. There was one lady at work who would follow me back and do a safety check. My family and friends were enormously supportive. I always needed help since I couldn’t drive.

 

Z: Your scariest or strangest seizure experience?

N:  My last seizure in 2006 was the scariest. I was home alone, I couldn’t see to call anyone, I couldn’t get ahold of anyone to help me. I called my boyfriend’s cousin, super confused, and knew I needed help. The cousin9 knew something was up and called 911. I was lying in a fetal position when they found me. I couldn’t speak, I was just talking garbled nonsense.

Z: Tell me about your medication journey…what worked or didn’t, side effects, aggravating experiences, insurance troubles?

N:  I tried every med possible for my seizures and couldn’t find control. So that affected me both physically and psychologically.

Z: I can relate! There comes a point where you feel like you’re banging your head against the wall, right?

N: Yes, and people don’t understand that even when a medication works, the side effects can be awful. Like the treatment is worse than the disease.

 

Z: How did you move from VNS to the total lobectomy? A doctor offered me the lobectomy at one point, but I was terrified of that option.

 

N: Since the VNS wasn’t working, I spoke to the neurologist who’d treated me throughout that time, and he said we think you’ll need brain surgery to stop the seizures. There were lots of pre-tests leading to it.

I was frustrated, at that point I didn’t care if I lived or died. I was dealing with severe depression. I was nasty, I was mad at the world. It affected so many relationships and every area of life. I was a real mess. When the neuro said the next step was surgery, I looked at my mom, crying so hard, and I said if this is what we gotta do then ok!- because I don’t wanna to be like this anymore.

 

Z: How did you prep for that surgery?

N: Lots of pre-testing, cognitive tests; inpatient stays to provoke seizures. I had probes implanted into my brain and they took me off my meds for 10 days, videoing me so they could get the data. After getting off my meds I started having seizures. All of them were coming from the right temporal lobe, so I was a candidate for surgery. It was so intense and emotional! My dad was crying before I went in the OR; I was in surgery for 18.5 hours! The whole right temporal lobe was removed.

 

Z: Those pre-tests sound very much like the inpatient stays I had before my ablation. But your surgery was much more intense. Tell me about the aftermath.

N: I had a lot of fluid building up, my forehead felt was protruding and felt like jelly to the touch. The docs drained that fluid thru my spine. Then it built back up, so I had to have a shunt put in; I still have it now. And after that my skull got infected! They said I probably had my head opened too long. I have a titanium mesh now, which replaced part of my skull. By that point I was upset but not really scared, I’d been through so much already.

 

      Z: Can you tell the shunt is there? How does it feel?

N: I can really feel it when the weather changes. The air pressure shifting is horrible, and I get bad headaches. But it keeps the fluid out.

 

Z: So what happened next in your recovery?

N: I didn’t have seizures after surgery, and I counted the days. The 3^rd of every month is my anniversary of being seizure free. I’ve stayed in touch with my nurses who helped me after surgery, and that is a special bond. I crocheted a blanket and gave it to one of them. The surgeon said my attitude got me through! I was so ready to get my independence back.

 

Z: What has your experience been with doctors & neurologists? How has this journey changed your view of medical care for people with long-term conditions?

N: One neurologist after surgery said I’d probably still have seizures! I thought, don’t you dare come and tell me that! She burst my bubble, and that was not okay. I changed neurologists after that. Nobody needs negativity from their doc.

Z: Have you experienced any surprising or unexpected gifts/blessings because of your    diagnosis?

N: All my friends at Sears were like a second family and took good care of me; that was a gift. And if I had to go through it again, I would! Why live a miserable life with seizures if you have a chance to be seizure free? What did I have to lose? I went back and earned two associate degrees after that. I had a whole new life.

I kept all the cards that were sent to me after surgery. There was a benefit spaghetti dinner held for me afterward; all these people came and waited in line, and I couldn’t believe it. I felt so loved and saw how people really cared. I believed in myself more after the surgery. My family was shocked when I came out of it smiling. I’m a different person now!

 

Z: What do you wish the general public understood about epilepsy?

N: I wish people would realize that it’s not our fault. It’s nothing we chose, it’s a glitch in our system.