“Epilepsy are you doomed?”

Let’s talk seizures!

Yes, they can be very scary but are totally manageable through medication. There are many different types of seizures and some are more serious than others. I was diagnosed with seizures at the age of 18 and took a year for them to get the medication right.

It all started when I had uncontrollable head movements, so I was admitted to the hospital. They did an EEG, which is the test they run to see if there is seizure activity. Once they discovered there was, they put me on Keppra. Unfortunately, it didn’t work out because I could not function on that medication. That medication caused me to become very lethargic so all I wanted to do was sleep.

After I was discharged from the hospital, I went to a neurologist. They ran another EEG, but this time found no seizure activity. My neurologist told me to seek physiological counseling because  she felt my problem was that  I was under stress. It is hard to believe she was serious about that diagnosis I was in my senior year of high school at the time and didn’t have any stress beyond the average high school student. I definitely wasn’t to the point where I needed counseling or where stress would be causing serious medical concerns.

After that, I went to a new doctor who sent me to a cardiologist. I had to wear a heart monitor for a month to make sure I didn’t have heart problems. Luckily, I didn’t the problem was still seizures, they just had a hard time diagnosing them.

The reason they could not diagnose my seizures for the longest time is that they were almost impossible to see. While seizing, my eyes shut and flicker but my vitals remain normal. They say the reason my tests come back normal is that the seizures are so deep in the brain the test is not picking it up.

Eventually, they were able to give me an official medical diagnosis of Epilepsy. They don’t call what I have ‘seizures’ rather refer to them as episodes. This is because whenever they do a test nothing comes up. I am taking Zonisamide which is used to treat partial seizures. The triggers of my seizures typically are sleep deprivation, malnutrition, or stress. Also, if you have been on a medication for a while your body can get used to it and stop working. In that case, just go to the doctor to have your meds changed or adjusted.

You may think that Epilepsy would mean there is a lot of stuff I can’t do. Thankfully, that’s not the case. My seizures don’t restrict me from doing any of the things I love to do. I love to go to theme parks and I love the beach! I’m a very strong swimmer and I’m not worried about seizures while in the water. I just make sure not to swim alone for safety reasons. The important thing is that I manage my medication and let doctors know if anything changes.

I hope this helped you learn a little more about my seizure disorder. If you have questions, feel free to leave a comment and I’ll do my best to answer!


3 thoughts on ““Epilepsy are you doomed?”

  1. I remember the first time you had a seizure in my presence. You guys visited us for a week during summer, the moms were shopping, and us kids were home with the dads. You were in the backyard and, if I remember correctly, fell on the ground. It was scary! Of course, your dad didn’t freak out and remained calm but we called the moms and you went to the hospital.


  2. That was really good Sarah! Please keep sharing with us.We have much to learn from you.


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