Throughout the last few weeks of planning my event, Move Mountains, I have had the pleasure of speaking with or emailing so many courageous individuals also living with epilepsy. They have given me strength, made me ask myself questions I may shy away from and reassured me that this 500-mile run is more than worth it.
Although the answers are very different, the conversations always seem to go in the same direction. Common questions that come up in our dialog… What kind of epilepsy do you have? Do you have an aura before a seizure? What medication are you taking? Do you have any side effects? Do you know any triggers for you? Are you embarrassed? Have you ever had one in a public place? What did you do? What did people around you do? Is there anything you can’t do because of your seizures?
I thought I would share my answers to the questions above with you all too. If you have epilepsy, this may be a way for you to relate. If you don’t, please use this as education on how it feels to have epilepsy (at least in my case). Each answer below could be it’s own blog post, but I will try to be as concise as I can and then in the future will elaborate in independent posts.
What kind of epilepsy do you have?
At the age of 8 I was diagnosed with simple partial seizures. Basically, I have a constant tingling sensation in my right arm. It’s there EVERY second of EVERY day. After living with it for 25 years I don’t notice it all the time anymore…unless I am thinking about or talking about my seizures. Needless to say, the last couple of months it’s been WAY more noticeable with all the work I have been doing to put on this event. When I have a seizure, the sensation intensifies and for 30seconds to a minute I can’t use my right arm and have to just stop what I am doing. I don’t lose consciousness, but I do sort of get in my own world.
I also have had a tonic clonic (or grand mal) seizure, the kind most people picture…when a person loses consciousness and control of their body. When I was 14 I had a grand mal seizure (which I will blog about soon). I am so lucky that I haven’t had one since.
Do you have an aura before a seizure?
I don’t now if “aura” is the right word, but I do have a sensation and know that one is coming on. The tingling in my arm intensifies. I have been able to stop them from happening by tucking my arm into my side with a fully flexed elbow, clinching my fist and grasping my upper arm with my left hand as hard as I can. Then I just focus all my energy on it stopping. Sometimes I’ve been lucky enough that it works. The doctors have told me this happens to some people and from the conversations I have had, other people have shared their own tactics to preventing potential seizure activity. One person would go run, one person would lay down and take deep breaths. For me, I don’t even know how I found this clenching of my arm worked, but from talking to others it sounds like it’s discovered usually as a reaction to the aura.
What medication are you taking?
When I was first diagnosed I struggled to find a medication that controlled seizures and I could function on. I was on different combinations of Tegratol, Lamictal, Neurontic, Depakote, the list goes on and on. I remember at one point I was taking 13 pills a day. Finally at the age of 14 I was put on Dilantin and it worked. It worked for 17 years. I did have seizures in there occasionally, but I was under control enough to live a normal life. For reasons I will discuss once again in another blog, I am currently on Keppra.
Do you have any side effects?
If you have ever taking anti-seizure meds, you know how horrible the side effects can be (or maybe that’s true for all meds). First, let me list the side effects I did have as a child with past medications… toxicity, double vision, increased appetite, weight gain, headaches, retching attacks, mood swings, fatigue. Those were all from the age 8 to 14.
The majority of my life being on Dilantin, I don’t know that I had any real side effects. The common one for Dilantin is swelling of gums, but with extra careful attention to tooth care I was lucky enough to come out unscathed.
Now on Keppra, the biggest thing I notice is fatigue and mood swings. I have to really focus on my sleep, I NEED it. When I don’t get it, the mood swings are tens times worse (although I am way to stubborn to admit it at the time…ha!). I notice myself getting irritated with the people I love most for the stupidest things…in the moment it feels so real and so justified. But when I take a step back, it’s almost like an outer body experience. Then a few minutes later I’m just fine.
This sounds weird to say, but I am not sure I know what my “normal” is. Being on medication my whole life, I know my “normal state” has always been altered. It’s my hope that someday medication won’t be necessary as it’s one of the worst parts about having epilepsy.
Do you know any triggers for you?
Stress is a big one! Stress in any form… work, lack of sleep, home life, too much exercise, being too hot. I’m still learning how to manage stress, but trying to take a few minutes everyday to just sit and be grateful for what I have helps. I’ve recently been working on breathing techniques that also help to calm my body.
Other than stress, lighting is a trigger. Flashing and flickering light does something to stimulate seizure activity (I’m sure there is a reason, I just haven’t researched it). Flourescent lighting has always been hard for me as well.
Are you embarrassed?
Not now! I was for a long, long time. I was diagnosed in 1990 and it took until 2012 to publicly let people know that I had seizures. Outside of my family, my few select friends and co-workers knew, but that was it. Seizures have such a stigma about them, that I was afraid people would see me differently. They would either think I was weird or they would treat me like I was fragile. I wanted to be treated normal and thought of as normal.
I recently got a message from a man in response to my video who said, “Jenny, you are far from normal… You are extraordinary.” That made my heart melt. I feel like people who are given epilepsy are some of the strongest souls in the world. We are given a “disorder” that effects our brain, effects our bodies and is totally out of our control. There is no cure and for many there is no known cause. But we continue to dominate life to our fullest capability and most people have no idea what is going on inside our brain. So no, I am not embarrassed anymore. I am proud. I am excited to share. I am excited to educate. I am excited to inspire.
Have you ever had one in a public place? What did you do?
Yes, but only my simple partial seizures (the one in my arm). I have had them while I was playing in soccer games. I have had them in class. I have had them at restaurants. I have had them at the gym. What did I do??… I had a seizure and moved on. Depending on the severity of it, I may have been tired and upset and out for the day. Or I may have shrugged it off, and went about my day like nothing happened. No seizure is the same. No seizure effects you the same (physically/emotionally). No reaction is the same.
What did people around you do?
Honestly, I don’t remember. I think in most cases when I was little I was too embarrassed to pay attention to what other people were doing…except one time… I remember as a little girl I was playing at my best friends house. We were sitting playing in her dollhouse and I had a seizure and peed all over the floor. Her mom came in, I was crying and mortified, but my friend went with me to clean up and make sure everything was okay. Then we continued our play scenario at the dollhouse like nothing ever happened.
As an adult, I’ve realized that most people don’t even realize I am having a seizure. It’s something I have, I deal with and I move on.
Is there anything you can’t do because of your seizures?
Not at this point in my life. I just have to be more careful than most when it comes to taxing my body. That doesn’t mean I don’t push myself, because I intentionally do just that. But rather I have to pay very close attention to my body and make sure that I am doing everything in my power to keep stress low, quality nutrition in and adequate activity. I am a HUGE believer in lifestyle being a contributing factor in helping to control seizure activity. Low stress, adequate sleep, proper nutrition, daily activity… keys to a healthy lifestyle no matter WHO you are or WHAT obstacles you may have.
Epilepsy effects 65 million people world wide. Every case is different from the next. We all have our unique experiences. Some good, some bad. The important thing I am finding out is that we share them. Share them for our own sake to feel unashamed and to feel the support of others. Share them for other’s education of a disorder that effects people all around them that they may never be aware of until it’s too late.