What is Epilepsy_This My Story

Today I’m going to talk about, epilepsy. After my brain surgery on (February 23, 2015) I experienced my very first seizure. From what I’ve been told and what I can personally remember. It happened about a week after getting out of the hospital. I was back in the hospital because I had a bacterial infection. My first seizure happened around 11:30pm and the only reason that I remember this is because my alarm went off. That’s because I had to take my last dosage of antibiotics through my PICC line. Personally, my last thing I truly remember is cleaning (all the medical supplies) then plopping myself back onto the couch. Then I had a seizure and ended up falling off the couch and landing on my side. This was quite funny because when my mom called (911) to inform them that I had a seizure. They told her to turn me on my side and her response was “she already is, that’s how she fell”.
One of the reasons why I wanted to write a blog post about epilepsy is because it took me six months and three major seizure to final get diagnosed with generalized epilepsy. I’m definitely not blaming anyone for this because my case/medical history was quite complicated. Many of the doctors at the hospital where I had my brain surgery just thought my brain was healing and it will be something that will go away.
Then in December of 2015, I finally was able to see an amazing doctor that specializes in epilepsy. What makes her even more specialized, she only sees the woman. I was so excited and also nervous but I did know that I wanted answers. Before, that doctor’s appointment I ended up having a very short EEG to update the crazy brain activity. After talking to the doctor, my mom asked her about the EEG and she pulls it up on the computer and says “you have generalized epilepsy and this is why”. My mom and I were shocked/sad but also feeling happy because we finally got an answer. Before we had doctors say something like this, “we don’t know we have never seen seizures after this type of brain surgery you had”. One of the ways I like to describe it felt like I was being brushed off, like having seizures was no big deal.
Generalized epilepsy is genetic so it’s something you were born with. In my case, it was sleeping for 24 years. Then when I was on the antibiotics for the infection, that’s what woke up the generalized epilepsy/seizure activity.

What is Epilepsy? Epilepsy is a disease involving the brain that causes people to have multiple, unprovoked seizures. Seizures are a brief electrical “STORM” in the brain.
What happens in the brain? A person’s normal brain activity is disturbed. Then the brain cells begin to fire rapidly in an abnormal way. This type of activity changes how the body moves and functions.

Did you know, that 1 in every 28 people in the United States will suffer from epilepsy at home time in his/her lifetime? There are also emotional changes that happen for patients with epilepsy. About 23% report anxiety and also 24% of people report some type of mood disorder. Another big emotional change for people with epilepsy is depression. I want to be 100% honest with you, I’ve personally experienced these problems with both of these things.
Four years before being diagnosed with epilepsy, I saw a change in my mood and activity. I just thought it was me, I was stressing out about school/work and personal/family events were going on. Now, that I know there is a reason on why for these mood changes because I have generalized epilepsy. One of the ways that help me to calm that anxiety is working out. I’m not sure what it is but there’s something very calming about working out/yoga and lifting weights. I know the anxiety is always there and it will be something that I just have to work with. Just like the depression that pops up ever so often.
Last but not least, I do want to touch on one more topic and that’s seizure safety. There’s still a misunderstanding/old practices that if someone is having a seizure they will choke on their tongue so then you need to place something in their mouth. This is not true at all and one of the worst thing you can do for that person that’s having a seizure. I wanted to talk about this because it shocks me that there are so many people out there that don’t know any seizure safety or having a misunderstanding. Truthfully, before having seizures myself, I didn’t know much about the proper safety/seizures.

If you would like to know more information, you can go to the epilepsy foundation website. http://www.epilepsy.com/

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5 thoughts on “What is Epilepsy_This My Story

    • Kaitlyn's Life says:

      Hi Jeffrey,
      There is a Possibility that I could be genetically predisposed.
      but things are still being researched/looked at because according to my doctor. I might be having different types of seizures compared to other people with my gene mutation.

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  1. Jeffrey Liakos says:

    Hi Kaitlyn, I also recall when I inquired as to if an EEG test was a determining factor that indicated that you had Epilepsy that my comment had made you angry, that you were feeling attacked. At the time, I did not meant to cause that for you. There was a reference to when I would get the headaches. Have you gotten post-seizure migraine headaches or the regular headaches? When I say regular, I mean the headaches that can be resolved with Advil or Tylenol. Also, being unable to drive is both a blessing and a problem. The blessing is the fact that I won’t have to contend with parking tickets or speeding tickets. The problem is the fact that it is inhibiting my desire for more independence. By the way, you can also reach me at jeffreyliakos@gmail.com if you ever want to chat regarding this topic.

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    • Kaitlyn's Life says:

      I do remember that, I’m. Very sorry to misunderstand/taken in what you were trying to say. I was dealing with a lot when it comes to my medical/health. For example, being diagnosed with breast cancer at the age of 25 and being frustrated to figure out what to do. I was stressed and putting my fruition out in you. I have no headaches at all and I definitely hear what you are saying. I currently do not drive but I’m glad to live in a great city with public transportation.

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  2. Jeffrey Liakos says:

    I am not in a place that has the benefit of public transportation. That is somewhat frustrating for me. Also, if you want, you can reach me at jeffreyliakos@gmail.com if you ever want to chat. Now, the disorientation is problematic for me following a seizure. However, the headaches are so much worse.

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