*This blog post is my own opinion. Please contact your doctor for medical advice or a complete diagnosis.
Hearing the phrase “You have Epilepsy” can be one of the scariest things anyone can hear, but I promise you can have a meaningful, fulfilling life just by being informed. Trust, I could have spared myself years of fear and worry if there were advocates, resources, support groups, foundations to turn to growing up. I remember just having this one orange pamphlet from the doctors office just to tell me about the one type of seizure I was experiencing at the time. That was over 20 years ago and boy how the times have changed. Understand, if you have been newly diagnosed, a caregiver taking on this responsibility, a friend or someone who decided I just want to know more on this topic, you have outlets.
After living with epilepsy for the last 30 years of my life, I’d like to say I got this thing down to my own science. But, it hasn’t always been this way. As a kid, I relied on my doctors and mom to explain to me what seizures were. I had my first seizure at 3 weeks old. A seizure is a sudden surge of electrical activity in the brain. A seizure usually affects how a person appears or acts for a short time. Some seizures may last longer than others. At the time, I was having what was known has grand mal seizures. This is what folks typically think of when you say seizure. The falling to the floor, shaking, eye roll. When a person has more than one unprovoked seizure, they are then diagnosed by a medical professional as having what we call, Epilepsy.
Let me drop a few facts about Epilepsy for you:
- Epilepsy is the 4th most common neurological disorder and affects people of all ages.
- Many people with epilepsy may have more than one type of seizure
- There is no cure for epilepsy but proper treatment and care may help
- 1 out of 26 Americans will develop epilepsy in their lifetime
- 3 million Americans and 65 million people worldwide live with epilepsy!
- An estimated 200,000 people are diagnosed with epilepsy every year
- In 2/3 of patients diagnosed with epilepsy, the cause is unknown
- For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence. * – Information from Citizens United for Research in Epilepsy
Those are just a few hard facts to know about epilepsy. But you should also know, you can take control of your epilepsy and not let it control you. I was seizure free for 17 years. At the age of 26, I was diagnosed with Temporal Lobe Epilepsy. Yep, the seizures started again, but this time in the temporal lobe of my brain. Temporal lobe epilepsy is the most common form of partial or localization related epilepsy. You can learn more about my life with TLE from a previous blog post here.
Thinking back on the lack of outlets growing up, I realized I could no longer stay silent about my invisible illness. It was time to speak up. Not just for myself, but also for those who were afraid to say, “I feel alone, I’m ashamed, I’m afraid and I’m indeed scared”. I am hear to tell you that this is something you do not have to battle alone. Build your doctor/patient relationship. Tell them what you are feeling. If you can’t communicate with them, then they cannot properly treat you. Keep a journal. Identify your seizure triggers. The BEST way to take control of your seizures is to try to figure out what could set them off on your end. The most common triggers are lack of sleep, alcohol, stress, for women- hormones, missed medication and the list goes on. Practicing self-care will be one of the best things you can do for yourself and your life with epilepsy. For those who have uncontrolled seizures, there may be options for you too. Just communicate with your doctor. You are your own best advocate in the end!