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 home from the accountant’s office, a beautiful July morning basking in the sense of unburdening that having sent in all of our business taxes had given me. Late but nonetheless done, another thing off the to-do list. My life necessitated a long to do list. Together with my husband I ran a business, for which I did the estimating, human resources, business development, customer relations and of course the bookkeeping. I was 44, a mother of three, a lover of the wild and the water, pursuing my masters while employed full time in health care. Ticking things of my to-do list kept our family and business running smoothly. 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? It was 3 pm, my trusted doctor of 20 years had just taken an early retirement a week earlier, her replacement was not due to open her new office for three weeks. 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 walk in clinic and they squeezed me in. 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 just after noon 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, odd I had not recalled ever feeling that before, 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, odd again, I do not remember feeling lots of nausea in the past. I hastily rolled the window down and wretched.
Andrew was scared, he had never seen anyone having 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. I remember vividly having my gaze locked on to the dash of our station wagon and calling for my mother as we drove to school one day, and then the saliva, and the feeling in the pit of my stomach and then it was over. 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. But they never came while driving the tractor on the farm (yes back in the day 12 year olds drove tractors to help bring in the hay), or riding my bike. In fact they rarely came in the summer at all. Perhaps that is why the specialists never believed what was happening to me was neurological. The head of neurology at the highly respected Children’s Hospital of Eastern Ontario announced emphatically to my mother, a very savvy woman trained as pediatric nurse, that what I had was definitely not epilepsy as I was not loosing bladder control. As a result of his misdiagnosis I spent the next two years speaking with a lineup of psychologists and psychiatrist’s who tried to find the 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. At the community Christmas party that year 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 I remained seizure free. And so I moved on and forgot I had Epilepsy, until July of 2014 when suddenly I was forced to remember.
It just so happened that the son of the neurologist who had treated me as a child was also a neurologist and still in practice and agreed to see me right away. He ordered a battery of tests and 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. When faced with adversity I tend to rise to the challenge, but in hindsight it was probably not wise to register for more courses towards my masters degree. But I needed to feel in control of something and I was not in control at all. 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 teenage daughter and ageing 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.
August turned into September, I kept working from home, my mother in law sitting on the sofa behind me in my office just in case I had a seizure. And I did, many, and they got worse. From 30-45 second partials to full on tonic clonic Jacksonian 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 Keppra a day, the maximum. And I began to notice some trends. 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”. By now my new family Dr was up to speed as well and although she had never heard of it 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 in the online communities. Oct 23rd 2014 I started a strict ketogenic diet with less than 20 grams total carbs per day and moderate protein. On Nov the 5th I had a 30 minute long seizure at home with only my frightened 12 year old with me. The next day I told my neurologist that the keppra was making things worse and that we needed to stop it. He agreed and asked me to cut my dose in half and prepare to start Tegratol again in one week. I knew that Tegratol would likely mean the end of my career and the thought of the side effects was terrifying. I cut my dose and filled the Tegratol prescription but I did not have a seizure that week. I had had over 120 seizures in three months, at least one a day and that week I did not have any. I dropped the Keppra again to 750 and a week later still no seizures. I went 49 days with no seizures. On day 49 I had a seizure (more of a strong aura)and realized when I looked at my very accurate logs that I was about to have my monthly cycle. In fact my charting had shown a clear spike at ovulation and just before my cycle started. There was a clear hormonal component to my seizure activity. More research ensued and I cut all estrogenic food and agents, coffee, soy etc from my ketogenic diet and boosted all progesterone enhancing ones, Co Q10, vit E etc. I have not had a seizure since. Nor have I had an aura, I am medication free, working again, I was able to complete the courses I signed up for and have my license back again.
This way of eating has changed my life in so many positive ways. Before my Epilepsy diagnosis I had fibromyalgia and arthritis for which I took painkillers and sleeping pills when the pain became too much. I led a “healthy lifestyle”, low fat, high fiber weight watchers diet and exercising 3-5 x a week and still struggled with weight. In the first 18 months of a high fat moderate protein very low carb ketogenic diet I lost 90 lbs of fat and gained 20 lbs of lean muscle mass. I no longer suffer from any symptoms of fibromyalgia and no longer require pain medication for arthritis. I power lift three times a week and paddle competitively.
My blood work was mostly “normal” before I started with the exception of elevated inflammatory markers and a pre-diabetic HbA1c of 6.2 and was “optimal ” with an HbA1c of 4.6 and no inflammation 7 mos later. My caregivers are pleased as well, my family doctor has taken and interest and willingly accepts the journal articles I take to her. My colleagues at work ask for book lists and web links. There are always those who are skeptical, always those who are shocked by how much fat I eat. But the numbers don’t lie. Two years after beginning with bacon bacon and more bacon, I now eat two meals a day, with much less bacon. I eat a lot of green leafy salads with healthy salmon or grass fed beef or locally, humanely raised pork and chicken. I usually eat in a 4 hr window ( fasting 20 hrs) because it is what my body asks for. When I am hungry I eat more, if I’m not hungry I do not eat. I am no longer a slave to the concept of three meals and two snacks, and everything I thought I knew about “healthy eating” has been questioned and for me at least, proven to be unhealthy. I am more physically active than I have ever been and healthier than I have been since my 20’s.
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. 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.
The other night I said to Andrew, “maybe getting Epilepsy was really a good thing, look how it has changed all of our lives, not just mine in the obvious ways but all of our health has improved and I am presented daily with ways in which I can pay it forward.” One way is by interviewing others who have had success with a nutritional approach to their illness and by telling their stories.
Thank you for listening to mine.