“Epilepsy are you doomed?”

Seizures can be scary and sometimes difficult to diagnose because there are so many different types but are totally manageable through medication. I went my whole life and I didn’t have any seizures until high school when I started getting them. My seizures have not been easy to diagnose because tests don’t always reveal anything but once we found the right medication it was life-changing. Seizures can be scary and take years to diagnose and some are more serious than others but it doesn’t have to rob you of all your fun! My journey to finding the right medication was not easy but my life has not really changed because of my seizures. You can have a life with epilepsy and today I thought I would talk about my journey to help you better understand the condition because although it is a serious condition you can still have fun!

It all started when I had uncontrollable head movements, that I could not stop so I was admitted to the hospital to check for any possible shunt problems or seizure activity. Once they figured out my shunt was fine they did an EEG, which is the test they run to check for seizure activity and discovered there was some so they put me on Keppra.  Unfortunately, Keppra didn’t work out because I literally could not function on it and all I wanted to do was take nap all day long so I was quickly taken off of that medication.

After I was discharged from the hospital, I went to a neurologist so I could get my seizures treated and under control. 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 was hard to believe she was serious about that diagnosis because I was in my senior year of high school so I had some stress but it was not beyond the average high school student. It was definitely not anywhere near the point where I would need to seek counseling or that it would be causing any serious medical concerns!

After that, I went to a new doctor who sent me to a cardiologist to rule out any other serious conditions that could be causing these symptoms. I had to wear a heart monitor for a month to make sure I didn’t have heart problems. Luckily, I didn’t have any heart issues and the problem was still seizures, they just had a hard time diagnosing them.

After a year or two of my seizures of being undiagnosed, they were eventually able to diagnose them and the reason they were having so much trouble diagnosing them is that they were almost impossible to see. While seizing, my eyes shut and flicker but my vitals remain normal so it just looks like I am napping and a lot of the time people don’t even notice when I am having a seizure. My doctor says the reason for that and why tests don’t pick it up is that they are so deep in the brain it doesn’t register on any EEG and is more difficult to diagnosis because you don’t have the same information that you would if it didn’t come back normal.

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.

Some types of seizures will register seizure activity but some will not and those types of seizures are difficult to diagnose and find a medication that will treat them. When you have epilepsy there may be things that you aren’t advised to do like going to a club with strobe lights but there are plenty of things you can. For me personally, there are some things I don’t do because it could trigger seizures like go to places with a lot of strobe light but in my experience, my epilepsy doesn’t really take that much away from me. I still go to the mall with my friends and the beach with family and enjoy just as much as they do without worrying about having an attack!

You can have fun if you have epilepsy as long as it is being properly managed and your report and changes to your doctor. Sometimes when you have epilepsy you may have to take extra precautions that people without epilepsy don’t have to take but you can still have fun! Some activities are different for people with epilepsy to stay safe but they are still just as fun as they are for everyone else! As long as you know your triggers, take safety precautions and report any new symptoms to your doctor then you can enjoy life just like your friend’s can. 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.

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

    Like

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