My son, Braedan, had epilepsy. I say, “had” because he was told by his doctor last year that he is no longer epileptic. Yay!!!
Braedan suffered his first seizure at age 6½ while at home from school with a migraine headache. He was sitting on the couch in our living room when I noticed his eyes roll back and he started having a seizure right in front of me. I called 911. By the time that both the firefighters and the paramedics arrived, my son was still having a seizure. In fact, we went by ambulance to the hospital with sirens blowing as he was still having a seizure. His seizure lasted for at least 20 minutes. Once at the hospital he was given medication and they were able to stop the seizure. The pediatrician told me that he would probably be asleep for 24 hours due to exhaustion from the length of seizure and the medication. He woke up about 6 hours later totally confused, in a hospital bed, I was so lucky to be beside him to comfort him.
This experience was extremely traumatic for Braedan and for me. It was one of the worst things to witness as a parent. My son had never had a seizure before and as far as I knew we didn’t have anyone with epilepsy in the family on either side. It was a complete mystery. He went on to have a CT scan, an MRI, and several neurological tests done as well as seeing Dr. Mary Connolly, Epileptologist, an epilepsy specialist, at BC Children’s Hospital in Vancouver for several years. During the MRI it was discovered that he had scarring on his brain. At this point, it had been more than 6 months since the seizure and he had not had any more seizures since. We were given the option to put him on anti-seizure medication, but we chose not to, due to side effects and the fact that he had not had any more seizures since the first one.
Braedan went another 5 years before we started noticing some odd behaviour that we found out was actually seizure activity. We were expecting him to have seizures like the first one where his eyes rolled back and he was convulsing and lost consciousness. However, we found out that seizures can present themselves in many different ways. He would look at us but his eyes would kind of twitch a bit or he looked as though he was looking past us and he would speak to us, but it would be like gibberish and didn’t make any sense to us. Then all of a sudden he would come out of it and be ok. He wouldn’t remember what he said or why he behaved that way. We would then forget about it and move on. It was not until my mom noticed it and told us that he was having a seizure. We didn’t believe it as it didn’t seem like one, but decided to make an appointment with Dr. Connolly to discuss it. While at the appointment at BC Children’s Hospital he had a seizure right in front of the doctor. On our way home, he had three more.
After that appointment we decided it was time to try medication. We tried 3 different medications before we found one that worked for Braedan. Dr. Connolly also mentioned to our son that he was a candidate for surgery. We decided to talk about it and explore the options and because Braedan was almost 17 years old we let him make the ultimate decision.
Braedan desperately wanted to be “normal”. I think that it was when he got his “N” (novice driver’s license) that really opened his eyes. He only had his license for 4 days when he was driving my car home and blacked out on our street. The car hit a telephone pole and was totaled.. Luckily, he was not seriously injured. If he had blacked out minutes earlier he would have been on a major highway or on the windy road up to our house that has drops off the side.. The accident resulted in him losing his license until he went through a period of 1-year seizure free. He was in grade 12 and taking a metal fabrication/welding course and he wanted to be like all of his friends. He would be out of school soon and into the job force with no driver’s license. At this point, he didn’t want to wait any longer and told Dr. Connolly that he wanted to get the surgery. It was also important to his doctor that he got the surgery done before he turned 18, so that it could be done at Children’s Hospital.
We were so very proud of him and how brave he was. We spent the whole time with him while in the hospital and during his recovery time. Dr. Connolly and the team of surgeons, nurses, and specialists were absolutely amazing. Dr. Connolly believed the surgery to be a success. The surgery lasted more than 6 hours and they discovered a lot of “activity” that they feel was removed. Dr. Connolly also told us that she felt that Braedan was having seizures that we may have missed as they would have been subtle. Braedan took 2 weeks off of school and his teachers were very supportive and understanding of the situation. He had an amazing group of friends as well as family that all came to cheer him up and encourage him. He is our middle child and he has an older brother and younger brother that were also incredible. He continued on his medication for the year following the surgery and was able to get his driver’s license back again 6 months after the surgery. That made him extremely happy. The only side effect of the surgery is his eyesight was slightly affected but not anything that he would really notice, as it is the vision to the very top corners when looking to the side.
Here we are almost 5 years after the surgery and he has not had any seizures. He had an appointment with Dr. Connolly last year and she told him that he should consider himself cured of epilepsy. She was happy that we reported no seizure activity. He is also being referred to a Neurologist at Vancouver General Hospital, instead of going to Children’s Hospital, as he is now an adult.
The surgery has definitely been a life changing experience for our son. I see some of the effects that it has given to him regarding his emotions. He deals with ups and downs with his emotions.
Braedan is currently working as a ski lift operator at a local mountain and wants to pursue work as a welder/fabricator. He has completed level 3 for metal fabrication and will complete level 4 in April. He will be turning 21 this April and is currently living at home with us.
This is my story as a parent of a child with epilepsy and I am hoping that he will someday share his story with others. It has been a journey for him that I am sure others may want to hear more about.
We don’t know what caused his epilepsy. As a mom, I still wonder if it will come back one day although each year that passes I feel more confident that it will not.
As Vice-President, Business Development at Kinetic Construction, a Board Member, Vancouver Island Construction Association, Recipient of the“2014 Outstanding Woman in Construction”, Vancouver Regional Construction Association, and a Past Board Member, Headway, Victoria Epilepsy and Parkinson's Centre, and newly appointed to the BC Epilepsy Society Board of Directors, Katy refuses to be defined by her epilepsy. Welcome Katy Fairley.
How were you diagnosed?
I was diagnosed after a documented seizure the morning after my high school prom. I was 17. Documented just means it was seen by someone and I was lucky that my best friend was there and called an ambulance.
The ER doctor, to her credit, recognized immediately it was JME (juvenile myoclonic epilepsy) after talking with me, though more tests would be required. As she described the various symptoms of JME, I realized that I had been experiencing this form of epilepsy for years, probably since I was 14 years old.
I was leaving for university back east in 3 months. This was just one more thing I had to deal with and it was added to the laundry list of changes I was facing as I graduated. Looking back, it was a good distraction! My parents, somewhat surprisingly, let me work through it on my own. This was very helpful and I think allowed me to “grow up,” feel like an adult, and deal with adult issues.
On the Internet, I found a message board dedicated to various neurological disorders and a board dedicated specifically to epilepsy. I posted a few times but did far more reading. Through that site, I learned how many types and forms of epilepsy there are.
Have you had challenges with medication?
While I am no doctor, JME is a fairly benign and “easy to treat,” meaning it responds well and can be controlled by medication. There are numerous types of AED (anti-epilepsy drugs) and I have taken 3 of them so far. For me, the most disruptive aspect of having epilepsy has been the side effects that come with the medication. The first drug I took caused me to gain a great deal of weight and my hair to thin (just what you want when you are 18!). I was put on a second drug to mitigate those side effects.
Thankfully, I’ve been on a drug with little to no side effects for nearly two years. I am very grateful, not everyone who has epilepsy has that same experience with medication.
I have to be cognizant of my stress level and make sure I get the sleep I need. Both stress and lack of sleep are triggers for me.
Did you have concerns about telling your employer?
I had a seizure in March of 2014, the first in 11 years. I had not told anyone at Kinetic that I had epilepsy. I couldn’t drive for a few months – not until I was “cleared” by a neurologist. It was time to tell them. Kinetic was incredibly supportive and also gently curious; I was lucky in this regard. This gave me an opportunity to inform and educate, which is so crucial to changing people’s perspectives on epilepsy.
How do you challenge stigma or stereotypes?
I’ve had people comment upon learning I have it “but you are so well spoken!” This is always a bit of a head scratcher for me. Do they mean that people with epilepsy can’t be well spoken or that every “normal” person is?
It is important to talk about it because there is still a great deal of stigma surrounding epilepsy. It turned out others in my family had seizure disorders but it was not mentioned or talked about until after I ended up in the hospital. It was swept under the proverbial rug.
Additionally, I strongly and passionately dislike the term “epileptic.” I am not an epileptic: I haveepilepsy. It does not define me, no more than my blonde hair does. I’m not a blonde: I have blonde hair!
Thank you Katy for sharing your story and inspiring others.
My name is Linda McClure. I have had a wonderful career as a Associate Investment Advisor. I am a mom, a daughter, a sister and a friend. And, I have epilepsy.
My first seizure occurred on December 23, 2011 at age 46 in a Bikrams Hot Yoga class. I was not officially diagnosed until after a seizure on March 15, 2015. I had had a terrible headache that day which I’m prone to due to sinusitis, so had thought nothing of it. Shortly after my son had gone out for the afternoon, my seizure happened without warning. My son came home three hours later and found me unconscious. Medical professionals told me that I had continued to seize for an exceptionally long period of time and that I could have died. They said I was extremely lucky to have walked away from it without permanent and severe brain damage.
Through all my testing done back in 2012 they found nothing, but as we have since discovered, that wasn’t the case. The original MRI, that I had done privately due to the lengthy wait times, did not capture pictures of the area of my brain where my seizures where coming from. This wasn’t found until I had my March 2015 episode. I was 49.
I have what are called Complex Partial Seizures. I don’t fully understand all the medical jargon that goes behind explaining what this means, but I do know what I experience and they’re not a walk in the park, that’s for sure!
My next seizure in August 2015 landed me in the hospital for three weeks as they tried to keep my seizure activity under control. I was a mess! I was hearing and seeing things that just weren’t there and had trouble remembering basic things. I was a puzzle, a lab rat under a microscope. When they released me about a week later, I found myself on 4 different AEDs (anti-epileptic drugs). The pharmacy had to blister pack them for me, as I couldn’t remember which ones to take and when. Since they only do two weeks at a time and with a dispensing fee of $10 a pop, my drugs were costing me over $175 every two weeks! I have no benefits and my Pharmacare deductible is high so my out of pocket costs are pretty steep.
I’m on 4 different AEDs as drug therapy isn’t all that effective on me. Each of these drugs has various side effects which makes it difficult to function normally. Most of my drugs make me dopey. Some cause headaches, vision problems, sleep issues, tingling and joint pain, and memory problems. Being on all of these drugs and their possible interactions with other medications, I can’t take allergy pills, cough or cold medications. Getting the flu or a cold is a much bigger deal than it was before as my AED levels need to be maintained.
My life has completely changed from what it was. Since my August 2015 seizure I have not been able to go to work. I help clients plan their financial future and offer investment advice. I’m doped up on so many drugs and have a tendency to forget conversations and even words sometimes. I have a hard time making even the simplest of decisions. Would you want advice from me? I have my groceries delivered cause I can’t drive. Someone else cleans my house every 2 weeks cause I tire so easily. I rely on busses and cabs and family and friends and my feet, weather and stamina permitting, to get me to appointments and just to get out. No more hopping in the car to hit garage sales and wander shops and malls and walks on the beach by myself, lost in my thoughts, like I used to do. I can’t handle large crowds and noises; so movies, concerts, hockey and football games, I watch from my couch versus seeing them live.
With my very first seizure, it was more the type that one sees on TV. I was thrashing about and chewed up my tongue. My last seizure in July 2016 was also similar to what’s depicted on TV. My right arm was jerking about, I couldn’t breath or talk proper, my face was distorted with pain and the rest of my body was twisted and frozen. I couldn’t move afterwards. My mind was telling my body to move, but it wasn’t responding. It was like I was paralyzed. I had to sit in the ER hallway for quite some time before they would release me. I couldn’t go until I was able to bear weight on my legs and even then I had to leave using a walker! I was 50!! Who needs a walker at 50??!! With most of my seizures, I completely blank out. I lose total awareness of where I am, what I see, what I’m doing or where I’m going. I’ve been told that my eyes are open and I can respond to simple commands, but I have no recollection of these events.
I would say I’m one of the fortunate ones not to suffer multiple events daily or weekly. Since March 2015, I’ve averaged at least two BIG seizures per year. If you include the auras, the number changes substantially. The number of auras can vary from 18 to almost 50 per month and while not as debilitating as the larger seizures, they’re still mentally and physically draining.
These auras have preceded the BIGGER seizures and on days where they occur more than once or happen 2, 3, 4 or more days in a row, my anxiety levels increase as I wonder, “am I headed for a bigger seizure?” For me, my biggest trigger is stress. Everyone has some sort of stress in their lives and they say some stress is good. I can say that I’ve had my fair share of stress over the last 10-15 years and have always been able to manage it. What I’ve found over the last 2 years is trying to manage the regular day-to-day stress PLUS dealing with the stress of my Epilepsy has been overwhelming. I’m widowed with a 22-year-old son who is still trying to figure things out for himself. I’m a fiercely independent person who finds it difficult to ask ANYONE for help. Life is complicated enough but when you add in a chronic illness such as Epilepsy some days you feel those molehills ARE mountains.
My last BIG seizure was July 14, 2016. It was the first one that my 83-year-old mother had witnessed and it shook her up to see her daughter going through such agony as she stood helplessly watching. Previous to this one, I had a seizure in April 2016 in Home Depot. I had been out for a walk by myself and wandered in to look at patio furniture. This one felt different however and somehow I knew I had to sit down. I have no recollection of doing so and was found sitting on a piece of patio furniture and 911 was called. One thing that can often happen during a seizure is you can lose control of your bodily functions. I lost control of my bladder that day while sitting there on patio furniture in Home Depot. Fortunately for me I have no recollection of this, but just the thought is horrifying indeed.
I was a candidate for surgery. My Neurologist had referred me to the VGH seizure unit in 2015 however due to the lengthy wait times as Neurologists were leaving to work elsewhere, he referred me to the Calgary unit. I was admitted in February 2016 for monitoring and it was determined that I was a good candidate for surgery. My surgery was performed on August 2, 2016 and I’m slowly recovering. In order for my brain to heal they have kept me on my 4 AEDs and I continue to struggle with depression and anxiety and am now on medication to help stabilize my moods. As one can imagine, a number of nerves were severed in the process and as they heal and repair themselves it is quite painful. I find myself on medication for that as well. The addition of these 2 other drugs help, but only slightly as the doses are low. I’m now currently taking 6 different medications with no plans, as yet, to reduce them in the foreseeable future.
The medical system in BC has let me down. I’ve had to travel to Calgary to get the necessary care I’ve needed to treat my condition. They have the resources, without the delays, to help those like me where AEDs just aren’t enough. Last year, my family and I spent close to $10,000 of our own money that MSP doesn’t cover for travel and accommodation expenses. I’ve already spent about $1,000 this year with another visit to the seizure unit coming up.
I want people to know epilepsy is more than what they see on TV and in movies. I want them to know it’s different for everyone. Just as no two snowflakes alike, no two seizures are alike. What causes one to happen, how each person’s form of medication to treat/control the seizures can vary, that many can lead perfectly normal lives while others face more difficult challenges. When I mentioned to someone that I had epilepsy, their comment to me was ‘wow, you wouldn’t know it. You look fine. Your eyes are bright and normal. Your face looks good and your speech is fine’.He didn’t even know what a seizure was!
Education and awareness is key. It’s time we stand up for ourselves here in Canada and start speaking out for the hundreds of thousands that deal with this, and have dealt with this, for years and years. Talking about it, donating to research, educating themselves on what it is and how to deal with a seizure in an emergency. There’s so much misinformation that needs to be dispelled. I hope that by spreading my story and raising awareness can make a difference. To be an advocate to speak up and ask the government to allocate more funds to provide the proper care so others don’t have to go through what I am. It’s not just the cost. It’s sitting in a 9x9 room away from family and friends that adds to the loneliness and isolation that already exists.
Right now, my biggest challenge is recovering from surgery and not knowing yet if it was successful or not. Knowing that my recovery has a way to go yet. A process. One-step-at-a-time. As I’ve said before I’m a control freak, I like to plan things and I’ve always known how to handle things.It is difficult not knowing what my future holds. Not knowing what I’m supposed to do with my life. Not knowing if a cure will be found, will this ever end? Will it ever get easier? That’s the hard part for me. That, and the fear of waking up in the ER yet again.
I want some of my life back. I know I won’t get it all. I’m a realist. I’ve resigned myself to the fact that I probably won’t drive again and I won’t be able to go back to the work I did before. But I hope to be able to find some purpose behind what I’ve been through or at least be able to help others in some way.
My name is Monica Pietramala. I am 35 years old and have been living with epilepsy all my life.
When I was 5 years old in grade 1, I had my first seizure in front of all the kids at school and the teacher. They did not know what to do - they just stood there and watched as a 5-year-old twitched her arms, and on the ground having a seizure.
The teacher called my parents and the ambulance and they took me to the hospital to get checked. After the doctor came to see me, he told my mom and dad the results that I have EPILEPSY. My parents were in shock and scared. Then they told me the news and I didn't understand because I was still very young.
After elementary school I went to high school. This is where things went downhill for me with my seizures, and medications, surgeries, and so on. While in high school, my neurologist prescribed me lots of new medications, so I spent this period of time trying them slowly and going on and off different medications, trying to find something that worked for me. I would have seizure, clusters, black outs, drop attacks, and falling down while at school or with my friends and people would stare at me and wonder what is wrong with this person? I didn't have many friends in high school so I faced my epilepsy almost alone. I was in a Learning Assistance Class that helps people who have disabilities learn school subjects slowly and I had to take a year off from high school due to the disruption caused by my epilepsy.
In high school I also had two surgeries to see if it could help slow down some of my seizures. The first one, called the Left Temporal Lobe I had done in 1997. This surgery didn't help stop my seizures. The second surgery, the Vagus Nerve Stimulator – was in 1999. It’s a device that is implanted to send mild, electrical energy to the brain via the vagus nerve, like a pacemaker for the brain, to prevent seizures. It also didn’t work. Now, 17 years later, it’s still inside me but turned off, in case I have to try it again, I can avoid another surgery.
After high school I went to college at Vancouver Community College to upgrade my classes from high school. While in college, in 2001, I had a third surgery, the Corpus Callosotomy surgery. This helped reduce my seizures a bit. I still have seizures where I black out and don't know where I am going so I have to be very careful.
After college, I wanted to find a career or job, so I and made a resume, put it online and sent it to some opportunities that interested me and also sent it out by hand and waited. Every time I sent out a resume and I didn't get a response back, it did not stop me from keeping going. Over three to four years I sent out over 200-250 resumes without getting many responses. If I did, they would be by phone interview or interview in person, but I didn't get the job and I think it’s because of my disability. I kept sending my resume out until I got a hired. My disability does not stop me from doing what I want do in life today! I got two jobs out of so many interviews and they were at Safeway and Tim Horton’s. I was in for both. They asked me if I could work long hours, and if I could can do baking. I said yes to everything even cooking. But once I told them that I had epilepsy, they started to talk and then came to me and let me go - their excuses were that, they have to find someone with longer hours, and that can cook. When they said those things to me I thought - “I know what you are talking about” - and left and started crying. It was so hard to find a job that would accept me for who I am and for what I have.
For the past 11 years I have been working at McDonald's they have accepted me and taken me in as one of their own. We have had our ups and downs in the past 11 years but I still love them for how much heart they have for people with disabilities. I love working there because of the customers and the people I work with; everyone is so kind to each other.
Since being diagnosed with epilepsy at five years old, I have been on 30-40 medications and none have helped me or have helped slow down my seizures. When one didn't work I got off it and tried a new one. I’m still trying different new medications today, and only one or two have helped slow -down my seizures.
In 2014 I saw an ad about Empatica Embrace Watch. It is a watch that helps detects when seizures are coming on. I was so excited I applied for it right away. I had to wait over two years to get it because so many people from around the world with epilepsy had also applied for it. [Note: the Epilepsy Foundation ceased accepting applications for the Embrace watch on March 27, 2017. It was a pilot project by the manufacturer. The watches are still available for purchase. www.empatica.com.]
In November 2016 I received the watch and I am so happy I got it. The watch warns me when I am having a seizure and also calls my family to tell them that I am having a seizure and tells them where I am.
Today I am 35 years old, have a great job at McDonald's as a cashier. I have the best family anyone can ever ask for and a boyfriend who cares and helps me when I have seizures. I have tons and tons of family members who also care and best friends that I love and care deeply about.
I still have epilepsy, am on five medications morning and night, and continue to have three different kinds of seizures, but none of this stops me from doing what I want to do and going where I want to go in life today.
Ruby had her first seizure the summer of 2013. She had just finished grade 1 and was taking a writing class for summer school. She woke up one night and asked for her dad to sleep in her bed. An hour later I was awakened to the screams of Bryce calling out Ruby’s name and when I turned on the light Bryce was holding Ruby as she shook uncontrollably. At that moment, we had no idea what was happening and consequently no idea how our lives were about to change. After a second seizure we had our first of many EEG’s and this was the beginning of our worst nightmare; our healthy, happy-go-lucky sunshine girl was diagnosed with Benign Rolandic Epilepsy. The doctors said this was the best of all cases, as she would grow out of it. The doctors said this can happen and not to worry too much. The doctors said live your life and try not to be too stressed out about it, because Ruby would feel the stress. Don’t have her in your bed, as it would cause challenges down the line. The doctors said a lot of things, but all I could think about was how my only child could get hurt or possibly die. How she might not be able to drive; be able to play without becoming fearful of her surroundings; how she had to be prescribed medicine and how the medicine would affect her. This would be a test of our patience, our resolve and our love for our only child who was also afraid and unknowing of what lied ahead.
Our life had changed and trying to find our new normal was not easy. We work shift work from very early morning until very late at night. As we worked with Ruby through her dark moods and ever-changing daily routines, we also had to work with each other and our own dark moods. Yet, we were determined to do it as a family and not let it break us.
It was scary and stressful but after a few years when the seizures were less frequent we got into a better rhythm. We found the right dose of medicine and we saw our sunshine girl was returning to her normal self. We always openly talked about epilepsy to our friends, teachers and classmates to help Ruby feel supported. It worked because she was able to do a presentation about Purple Day in Grades 2, 3, 4 and now 5! Her friends were always engaged, asked questions and loved her for showing them that epilepsy was not something to be feared, not something that would prevent her from doing the things she loved and most importantly, that she knew this was just a part of her but it did not define her. Each year that passed we acknowledged the “anniversary date” by taking a trip to celebrate that we worked hard as a team and we got through another year stronger, better and moving forward with our reality.
Now, she has been seizure free for just over two years and we have worked slowly toward the day when she will no longer need her medicine. It’s a new scary time: what if the seizures return? What if her mood changes again? The unknown is always scary but we cannot predict what will happen so we are trying not to focus on that. We know we will still have a few sleepless nights watching the “Ruby monitor”, a few nights of feeling better having her sleep soundly in her own bed, but we are all very excited to celebrate and move forward as a family.
We vow to be a part of Purple Day every year and will continue to educate and talk about epilepsy awareness in our daily lives. We want to thank the BC Epilepsy Society for all their support over the years and for the opportunity to share our story.
Ruby, Bryce and Mary