Reflections on Epilepsy

This reflection article was written by Chantal about her experiences of epilepsy and the treatments she has undergone. Chantal is happy to be contacted by our readers, to do so please use our Contact Us form and we will pass on your message.

The Story I Tell at Parties

By Chantal Mynda Müller-Cohn

Editors: Kira and Jon

At sixteen I stood in the kitchen, waiting to leave with my dad in order to go to the DMV to pick up my license. Finally, I’d be able to leave when I wanted and go where I pleased. Minutes before leaving, a mysterious but common wave, which I can still only explain as uncomfortable, rushed through my body. My father placed a banana in my hand, thinking it was low blood sugar. Next thing I remember, two uniformed men were hovering above me. One sat on my right holding my arm to check my pulse while the other on my left asked me for my name, age, the year and who the president was. Completely confused, I realized I was lying on a skinny mattress in what looked like a tiny room holding medical equipment. I could hear sirens and felt the familiar feeling of speeding in a car down the highway. The man firing questions at me informed me that I had had a seizure and everything was going to be okay. In my lethargic state I had no idea what he meant by seizure. He recognized my perplexed facial expression and told me we would be at the hospital soon and my parents were meeting us there. Safe to say that was not the day I went to pick up my driver’s license.

The inside of an ambulance.

High school felt like a never ending uphill battle. I spent most of it testing different anti-seizure medications, trying to find one less likely to make me pass out in class or make my reaction time for volleyball slower.

After graduation, I enrolled at Whittier College. One day, I had a seizure in my dorm room and woke up to a group of girls crowding my door as once again paramedics asked: “What year is it?” and “Who is the president?”

School became increasingly difficult. I had trouble staying awake during class, couldn’t finish homework without falling asleep and often had to leave or miss class because I had had an uncomfortable aura, like the one I experienced before my seizure on the way to the DMV.

Not all auras lead to grand mal seizures, but they still make normal activities difficult, and stressing my body with low sleep and lots of caffeine can make seizures more likely. These circumstances came back to bite me when I tried to fly to France one summer. We were in the air when I had an aura, and just as I mischievously decided to use the threat of a seizure to scare the annoying people sitting next to me, I followed through on the threat! I remember reaching down for my medication and waking up on the ground in Arizona after the plane made an emergency landing.

As you can imagine, collegiate stressors (low sleep, high caffeine, etc) weren’t ideal. After three semesters of struggling with poor grades, I left school and came home to find another solution. After having little luck in southern California we heard about Dr. Orrin Devinsky, an epileptologist at New York University, who wrote one of the first books for families dealing with epilepsy.

I was a little taken aback when I met Dr. Devinsky. He told me there was a way I could be free of epilepsy, that I could drive and study, play volleyball without risking another seizure, and shed the fear of forcing a commercial plane to land. The answer, he said, was brain surgery, to remove brain tissue originating the seizures. The prospect of having total control over my body again sounded great, but as the daughter of two scientists, I decided to research the possible outcomes of the surgery. I do not recommend watching YouTube videos of brain surgery before undergoing it. I was terrified and for the first time I found myself crying from the fear.

The first time I began testing to see if I was a candidate for surgery I spent two weeks at the UCSD hospital to find out where my seizures were manifesting in my brain. We needed to observe a seizure in action. Sometimes you think being brought food in bed and binge watching netflix sounds like a nice idea, but after lying there, unable to move, videotaped 24/7 and having electrodes glued to your head, you realize being able to make your own food is pretty great. Two weeks went by but I had no seizure to show for it and therefore no data to help find the seizure locus.

A couple months later I tried again at NYU under the supervision of Dr. Devinsky. There I immediately told them I wanted to be off medication, I was not going to sleep or eat, and drinking was going to be at a minimum to push my body towards a seizure. By the end of the week I had a fantastic grand-mal seizure with loss of consciousness and violent muscle contractions. Once the seizure took place and all the physicians were happy with the data, we moved on to other tests. Among these, I found the WADA test fascinating–you are conscious while they put one side of your brain to sleep and you partially lose the ability to speak! After this test showed that my speech would not be impaired by the loss of the epileptic locus, we scheduled the surgery.

Classic Cubist art by Picasso, representing Chantal's experience on her post-op medication.
Picasso – Weeping Woman 1937

The surgery took eight hours and when I came out all I really remember is seeing my parents and having the biggest headache of my life. Again I was confined to a bed but this time I was welcomed by surrealist hallucinations from the wonderful medications I was given for the pain. I remember a Picasso-style head coming out of my knee, a fat blue bird which belonged in a Disney movie flying in and sitting on my surgeon’s shoulder, and someone walking into the room and placing a vase into a painting. Most of the hallucinations were odd enough to make me suspicious, so I asked my mom to confirm these things weren’t happening. Dr. Devinsky told me the surgery was a success and showed me with his pinky nail how tiny the pieces (the whole right hippocampus, right amygdala and a piece of the right temporal lobe) they removed were. The next day Dr. Devinsky brought the amazing pictures they made for me–I could see my open skull and the pieces they removed laid out on a table.

MRI Scans showing Chantal's brain following surgery and recovery, the right temporal lobe is largely missing.
MRI Scans showing Chantal’s brain following surgery and recovery. L/R indicate Chantal’s left/right orientation.

After multiple days in the ICU they let me go and about a week after the surgery I was able to take a shower. Because I was so weak I had to have my mother stand in the shower with me to wash my hair while I sat in a chair for a few days. Next I vomited all over the bed because I tapered off the steroids too quickly.

Finally the day came to fly back home to San Diego and I was happy and ready. While I wasn’t afraid of making the plane land, my mom was freaked out and had both of us take Xanax and do calming exercises before boarding. To our luck, I looked bad enough to be taken past all the lines at the airport and on the plane I was given as many pillows and covers as I wanted. So far, Dr. Devinsky had made good on his promises. I was excited to be home and out of the New York stink.

We landed safely, but upon seeing my dog, something felt off. Driving home something felt odd and my room didn’t seem like my own. I was in constant fear in my room and forced my mom to sleep on the floor in my room each night. I couldn’t sleep, two days later I had a terrifying psychotic break and believed aliens took my brain and I was in the wrong body. My parents rushed me to the emergency room as I repeated that we were little toys in a child’s game. The doctors there gave me antipsychotics and while they did not work perfectly, my mind slowed and I was able to sleep again.

A month later, I joined a brain rehab program where I learned to walk without requiring to focus on my balance, retrained my memory with games and boosted my confidence. It would be several months before I knew whether the surgery had been successful, but I was eager to get back to school and move on with my life. Unfortunately, I wasn’t ready. It was naïve to expect greatness from myself just a few months after brain surgery. Instead, I bombed my classes and felt utterly defeated. I withdrew from school and decided to move to Germany to live with my grandparents and to work on my German. I took multiple German classes and began teaching and tutoring English at a nearby high school. After two years, I returned to San Diego and re-enrolled at Mira Costa community college and this time my grades were better than I had ever imagined. In 2014, I was accepted to UC Davis and graduated in March 2017.

While I have been seizure free for 7 years I do think about it at least once a day, at 9 pm when I take my lamotrigine. Before the surgery I was on 600 milligrams of lamotrigine and now I am only on 150 milligrams. The surgery is such a success and has completely changed my life for the better. It allows me to taper off completely if I so choose. I began tapering every three months starting last year. Once I got to 150 mg,  Dr. Devinsky and another epileptologist said I should really think about staying on the medication, so I stopped tapering off due to fear. You don’t really know the risk of having another seizure until you have one, even after the surgery.

I still watch how much coffee I drink. I never drink energy drinks and am known to order Shirley temples at the bar. I will probably never go to a music festival because of the flashing lights (even though that has never been a trigger) and I still get scared if I don’t take my medicine before midnight (Cinderella syndrome ;P). Although I am considered ‘cured’, no one really knows and in the end it’s all a gamble. I don’t think I will ever feel completely comfortable with the idea of not taking an anti-seizure medication. Recently, I was told that every time I meet someone I immediately open up with epilepsy and brain surgery. It’s because having a disorder like epilepsy can take over and reroute your life. I am 27 years old, have just now graduated college, and epilepsy and brain surgery are the only things I feel I can talk about to make people forget my age and limited accomplishments.

The biggest wish I have is for all physicians to be fully informed about epilepsy and how common it is. At 12 years old, if my physician paid better attention and maybe knew more about the disorder, my seizure disorder would have been caught earlier and I could have began anti-seizure medication earlier. With fewer simple partial seizures my chances of growing out of epilepsy could have been higher.

To the researchers, surgeons and neurologists that allowed me to have a successful surgery, I am so grateful and amazed by the techniques and findings you make! While in Davis, I worked in a memory lab on campus where I both participated in studies about the hippocampus and served as a research assistant. I have now moved back to my home town of San Diego and started a short 6-week medical assistant course in order to see what the medical field is like on the other side. If I like it, I hope to go to grad school for a career in the medical field. Having a medical professional that has experienced the patient side and gone through your experiences is so important but lacking in most situations. I wish I had been able to talk to someone like this before the surgery so I could ask questions or they could tell me things I’d never thought of. I’d like to make my way to working in neurology because I would like to be the one to make someone feel safe and understood, just as the nurse in the emergency room did for me.

This reflection article was written by Chantal about her experiences of epilepsy and the treatments she has undergone. Chantal is happy to be contacted by our readers, to do so please use our Contact Us form and we will pass on your message.

Images: Ambulance; Weeping Woman Picasso
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