Why Now, Why me?
You never forget that feeling. An aura, such a beautiful word but the feeling that comes with it is so intense so profoundly visceral. Recognizable as the precursor to pain, even 3 decades later.
I was driving so it was a bit of a shock to say the least when I was struck by that acutely recognizable feeling of an impending seizure. My stomach leapt, my mouth watered, I swallowed compulsively and I thought, “ no, this is all wrong” . And then it was gone. I had never taken my eyes of the road, my hands of the wheel, never lost consciousness. But there was no mistaking — something was wrong.
I was in denial, it was a Friday, what was I to do? Surely this was a one off and would not repeat. Definitely in denial. The second aura hit me on Sunday, again no seizure but a clear indication that I needed to seek a neurology consult right away.
Monday morning I called the clinic I was out of the appointment, neurology referral in hand, in time for me to have lunch with my husband. Andrew picked me up at work and as we rounded the first corner I was struck again, but this time it was a full blown seizure. I had time to say “Oh no!” before my head dropped to the window, the drool built up in my mouth, I felt my left hand twist out to the left, and I could not respond to my husband. He stopped the truck, called my name, I could hear every frightened word, but could not respond, until, of course I could. About 30 seconds after it began I felt the ebbing of the seizure replaced by the massive surge of nausea. Andrew was scared, he had never seen anyone have a seizure let alone his wife. I reassured him that I knew what this was. It was Epilepsy. “Why have you never told me you have epilepsy?” he exclaimed. I answered honestly, “I didn’t think I did. Anymore”
As a child I had had “spells”. Sometimes up to 20 a day. They came while I was singing in choir, sitting in class, reading, they were short but exhausting and I would sleep for long periods after each one.
Misdiagnosis let to psychiatry referrals in an effort to find a psychosocial source of my ever worsening “spells”. The year I turned 14 we moved into the country and right next door to an eminent neurologist. That year, at the community Christmas party my mother cornered him and begged him to see me. The next week I was in his office having a battery of tests. The diagnosis was left temporal lobe epilepsy and the treatment was tegratol which I started immediately. I would have one grand mal ( generalized seizure ) a few days later and then be seizure free.
Being seizure free came with a cost. The tegratol made me very tired and negatively impacted my memory. But I was seizure free and so it did not seem to be too high a price at the time. However by the time I left for university, it did. I had wanted to study medicine but I had given up that dream after I found memorizing impossible. The thought of going through university with mediocre marks was distressing and so I made a rash decision to stop taking my medication all together. Low and behold I remained seizure free for nearly 30 years. And so I moved on and forgot I had Epilepsy, until July of 2014 when suddenly I was forced to remember.
My neurologist put me on Keppra. And my world began to crumble. We live in the country far away from any public transport. I could no longer drive, I had responsibilities at work which I felt driven to complete but having 4-6-10 seizures a day made that very difficult. As the seizures increased so did my keppra dose and so did the side effects of that drug. I could no longer manage my responsibilities to our business and my husband had to take on much of what I had previously done. He had to do all of the driving for not just me but also our busy teenaged daughter and aging parents. His burden from my illness was enormous. I was in tears daily, crying uncontrollably, and angry. The Keppra rage which is talked about is a reality and was frightening for my husband, my daughter and for me. The more burdens my husband had to shoulder the more guilty I felt and the more sadness and rage overtook me. I felt trapped, my work was telling me to take time off and I was refusing to acknowledge that I was actually sick. I was so afraid that if I took time off I would have too much time to think about just how devastating the situation was for my whole family. As time marched on the seizures got worse. From 30-45 second partials to full on tonic clonic jacksonion march seizures lasting 4 minutes. I needed more control. So I began to chart everything. Time, day, time of cycle, medication dose…I was now at 3000 mg of Kepra a day, the maximum. My husband was not sleeping, how could he? Every time I tensed up he jolted and called my name, afraid it was another seizure, often it was. He knew not to move me, that just caused more pain, he just watched the time, talked to me and stroked my head until my breathing returned to normal and I could speak to him again. I felt so guilty every time my seizures woke him. My husband is the hero of this story. His love for me drove him to seek help from an on line community. It is important to understand what an introvert my husband is to fully comprehend the profound nature of the actions he took. On one of the facebook communities he joined he heard mention of a ketogenic diet and asked me if I had ever heard of it. Immediately my research began. When I asked my neurologist about it he replied “it only works for kids but try if you like”. My family Dr had never heard of it but she said as long as I could justify the tests I was asking for she would support me. I could not find a single nutritionist or dietician in the city who could help me work out a meal plan where I could get the right macros and the majority of my nutrients. But I was soon to learn that all the help I needed was online. I found the Charlie Foundation which gave me the resources I needed to get off to the right start. Oct 23rd 2014 I started a strict ketogenic diet with less than 20 grams total carbs per day and moderate protein. Two weeks later on Nov the 5th I had had my last seizure. Today I am medication free, working again and have my license back again. This way of eating has changed my life in so many positive ways. I began a ketogenic diet to help with my seizures and the side effects were a 90 lb weight loss and freedom from pain. Before my Epilepsy diagnosis I had fibromyalgia and arthritis for which I took painkillers and sleeping pills neither of which I require any more.
There are always those who are skeptical, always those who are shocked by how much fat I eat. But the numbers don’t lie. Nearly four years after beginning with bacon bacon and more bacon, I now eat two meals a day, with much less bacon. Everything I thought I knew about “healthy eating” has been questioned and for me at least, proven to be unhealthy.
There are a few people in particular who have given me so much stellar guidance that I feel I might not have come this far, at least not this fast without their sharing of resources, journal articles, science, support, courage, and faith. Dr. Eric Kossoff who took my call and gave me hope as well as information. The Charlie Foundation for being such an amazing resource, Jennifer Pierce for teaching me to track and stay accountable and welcoming me into the bosom of a small but incredibly powerful online community where I found friendship, inspiration and encouragement. And most of all my husband.
My husband saved my life by reaching out to strangers. Strangers changed my life by sharing their knowledge and outcomes, and now I hope my story will change your life by inspiring you to make new choices, or support someone you know in their choices, no matter how “odd” they may seem, precedence has been set.
- Gillian Supports those on Therapeutic Ketogenic diets by sharing their stories and resources on ketoalldayeveryday.com
- Gillians favorite Charlie Foundation recipe, Swai-Au-Gratin