My name is Jen Annett. I am a wife, a mother, a professional triathlete, an employee, and I have epilepsy.
I started having simple partial seizures (also known as Auras) after I got hit by a car in 2008 while I was on my bike, training for the Ironman World Championships in Hawaii. I continued to have these “spells,” which went undiagnosed, for 2 years. The doctors just kept brushing these “feelings” off as electrolyte imbalances from my training. I continued to race triathlon and Ironman, and it wasn’t until December of 2010 that I had my first Grand Mal Seizure.
I was supposed to pick up my husband from work. He called me because I was late, and woke me up from the couch. I didn’t remember getting there…the last thing I remembered was putting some Christmas presents away in one of our bedrooms. He asked me if I had been drinking because I sounded like it. I also had a lump on my forehead that I didn’t know where it came from. We were confused but just brushed it off.
The next day, I was helping a client at the bank that I work at. The next thing I knew, I was on the ground with paramedics standing over me. I had had another grand mal. I had fallen off the chair I was sitting on and was convulsing against one of the back counters. I had also lost control of my bowel and bladder right in front of my clients and fellow employees.
I was so embarrassed but at the same time had no idea what was going on. The paramedics kept asking me questions like “What day is it?” and “Do you know where you are?” I knew the answers but somehow couldn’t communicate my brain to my mouth. What was going on?! I got taken away in an ambulance to the hospital, and spent a couple days there getting tests done. Sure enough, the EEG showed some abnormalities in the right side of my brain. Fortunately the MRI did not show anything abnormal.
After I had explained the feelings or auras that I had been having for the last two years, they told me that these were in fact small seizures, also known as simple partial seizures that I had been having. They put me on meds and scheduled a follow up appointment with a neurologist. My appointment with the neurologist did not go well. I left his office devastated. He told me that I couldn’t drive, bike by myself, or even have a bath by myself. I was also told that if we wanted to get pregnant, that I probably wouldn’t have a normal kid.
I felt like my life had ended. I was only 25. How could this be happening to me? I was healthy, an Ironman athlete, and had no history of seizures in my family at all. I wanted a second opinion, so I was scheduled with another neurologist 6 months from then. In the meantime, the medication seemed to work as I was no longer having these little spells. When I had my appointment, he started talking about epilepsy. Whoa, whoa, back up a moment. Epilepsy?! Is this what I had?
I had heard about it before, but really didn’t know anything about it other than it had to do with seizures. We talked about a plan for me to get pregnant, and I was educated on the birth risks (which were not that much higher than a person not on medication). My situation was better because I was only on one med. Because I had no seizures over the last 6 months, we decided to try to wean off the meds, or at least to the lowest dose possible so that we could get pregnant. I had managed to get down to a next to nothing dose, and then found out that we were in fact pregnant!
Everything was going great until about 3 months in, when I started getting those “spells” again. Since I was at the end of my first trimester (which is when the risks are the highest), they increased my dosages again. I then ended up having a grand mal seizure when I was 5.5 months pregnant. I was rushed to the hospital, where they did a bunch of tests to ensure that the baby was ok, as I stop breathing when I have these seizures and the lack of oxygen can cause brain damage to the baby. Thank God, everything was ok and the baby appeared healthy.
I continued to have “spells” through the rest of my pregnancy, but somehow, we ended up having a perfect little boy (who is almost two and a half).
A couple weeks after the birth of our son, I had another gran mal out of the blue. I was so paranoid about being alone with my newborn son. What if I had a seizure while I was home alone with him? What if I dropped him? It didn’t help that the doctors that I had at that time enhanced these feelings, and never offered me any support.
I continued to have my little spells, and didn’t have another grand mal again until Christmas. Almost all of my seizures followed the pattern of happening within 30 min of waking up in the morning. Well, this one was in the middle of the day…..just when I thought I might have figured something out! Over the next year I experimented with a more natural treatment option (still taking my meds of course), using a naturopath. We tried acupuncture, food testing/diet changes, homeopathic remedies, supplements, you name it. This helped a lot with other symptoms (headaches and digestive problems), and seemed to help with my seizures for a bit…..and then the spells would come back.
My meds were constantly being adjusted, but for some reason would never read therapeutic levels in my blood tests. I was frustrated, but at the same time, determined to not have this condition run my life. I signed up for Challenge Penticton (formerly Ironman Canada), and set off training. I went back to work in May of 2013, and was also training for triathlon at a professional level. Balancing family, work and training became a huge challenge, but thanks to the support of my husband, and utilizing my lunch breaks, I was able to squeeze it all in.
My racing year started off very successful, winning or coming second overall female in each race. My doctors advised against this sport as he risks of having a seizure in the water or on my bike were so high. However, the harder I trained, the less I had these little spells and never once in full training mode did I have a grand mal.
I pursued racing Challenge in the Pro category, and came in third in 2013! After this race, I decided to cut my training back quite a bit as we were going into off season. Well, October rolled around, and whamo, I had 4 grand mals in a day. This was the worst yet. I had never felt so awful and brain-dead in my life. I was taken to the hospital and spent a few days there, and finally got referred to the epilepsy clinic in Vancouver. Oh, and the icing on the cake, my 6 months of no driving started all over again. This meant I had to walk/run/bike my little guy to daycare, even in the winter.
I went to the clinic in Vancouver, where we made more adjustments to the medication again (still on the same drug), with hopes to get my blood levels up. The idea of surgery was thrown out there, but I would have to have 2 meds completely fail before this would be an option. The wait for surgery is 2 years, so, given my history, they put me on the list. I left the clinic feeling better and more educated, but still doubtful that the meds would work. He said that with this particular type of epilepsy, it is 80% resistant to drugs. Surgery has an 80-90% rate of being successful with little or no meds needed afterwards.
Over the next few months, my medication was increased to over max dose, and still wouldn’t read in the therapeutic range. I became a totally different person. I was tired all the time and had no motivation to do anything. I didn’t even want to play with our little boy. Our relationship began to get stressed because of my lack of interest….I was just so tired all the time. This person was not me. 5 months after my last grand mal, which would be March of this year, I had another grand mal out of the blue. I went back to the clinic, at which time, they did some memory testing, and determined that I did actually have brain damage from all the seizures I had had in that one day. This at least explained the short term memory problems I was having. They also decided to try a new drug, as the old one obviously wasn’t working. The plan was to eventually wean off the old one, but it would be a long process. I continued to work my day job, and train and race, and to our surprise, I have had the best results this year that I have ever had. I have won or placed in the top three, and just a couple weeks ago, placed third with a PB in Challenge Penticton (an iron distance race).
I truly believe that the mind is the strongest part of our body. If you really want to do something, you can…and will…do it! I, by no means have been a “happy-go-lucky” person through these last few years. I have had my moments where I just want to give everything up. I just keep telling myself what I have accomplished and about the amazing life that I really do have with the perfect family. Sometimes that’s what it takes, is to just take a step back and appreciate the things that are good, instead of dwelling on the bad. Life will always present you with unexpected things that you have no control about. It is up to you to have the attitude you want. I always believe that there is someone out there that’s got it way worse…. And really…. I don’t have it that bad. I know that this condition will be a battle my whole life, but I just have to make the best of it as it comes.