Discovery of a Seizure Disorder

by Heather Cotter 2 years ago in health

Five years and counting...

Discovery of a Seizure Disorder

No one ever wants to be sick, to have issues. I was used to taking medication for different reasons my entire life. But starting my college years, I never thought this would be such a tiring process. Five years of testing and doctor's visits to try to resolve this issue.

My freshman year of college started as any other's would. New people, new places, and new activities. One thing was different, though, I had blank spaces in my memories. I was ending up in places and not remembering how I got there. My roommate and friends kept finding me lost and confused as to what was going on.

My dad refused to acknowledge these things were happening, even when I had an episode in front of him. My mother, on the other hand, decided it was time I go to a doctor. I was having what was called a petit meal or absent seizure. This is characterized by long moments of spacing out, confusion on situations or people, sometimes even not knowing who you are.

This led to the first neurologist and first medication. She sent me for an MRI that turned up to have no mass in my brain. So she medicated me and sent me on my way. The medication did not help. I still had seizures and they got more intense as time passed. The medication made me cut gluten out of my diet because of the makeup of it. It also made me very, very depressed.

I thought I just had to deal with it. So I did, for three years. I let my self esteem and confidence disappear. I let the devil sneak in. I let the seizures keep happening. I let it all happen, until the self harm appeared. I will admit, in my depressed state, it made me feel better. It made me feel better because I felt I was punishing myself for how I was. After I had done it, I felt awful.

I texted my friend, Austin, and waited crying in the dorm stairs. It was a very disappointing moment for myself. Luckily, he was a great friend and just sat and cried with me. I ended up back at the doctor's, this time off the first medication and onto an antidepressant. With my friend's help, I was able to recover from most of the depression.

But now I sat, four years later, on no medication that helped. The seizures had gotten worse and added convulsion (grand mal) into the mix. I tried diets and vitamins. None seemed to work. So I went back to the doctors to be sent to a new neurologist.

He was an epilepsy neurologist and knew a lot about seizures. We did a twenty minute EEG. I had a seizure, but nothing showed up in my brain. Then I had a ten day EEG. A woman came to my home and glued electrodes to my head. A camera sat in my room recording my sleeping. I had to document every time I ate or brushed my teeth.

This was all during student teaching. I got to wear what looked like a big white sock on my head with a DS bag attached to my hip. My third graders were warned not to touch my head or sock. I would have to leave school early to go take my electrodes off, and shower, the two times I was able to shower during that week.

Again going back to the doctors to find out the readings showed nothing toward epilepsy. My neurologist became very angry that it wasn't the answer and refused to believe I had anything other that PTSD.

I will admit that I did have some regrettable events in my past that were out of my control. I have since been to a psychologist who ruled that I did not have PTSD.

My brother and my dad both have serious heart conditions. My brother had blackouts that resulted in discovering his issues. So my doctor wanted to do an EKG on me for a month. So for thirty days, I had a montitor taped to my chest. Luckily, this time I could take it off and shower when I needed to.

Photo Credit: Heather Dickson

Again after all the testing, it proved unsuccesful. I had given up. I was off all medications now and back to eating gluten. I was tired of testing and doctor's visits. I was tired of not having a name for it. Between all of these tests, they had taken so much blood to test for anything they could think of. It had been five years.

We tried one last medication. It was a long shot and still would not give me a name for it, but we tried it. So far it has been working. Four months and I have only had one seizure. Before that, I was having four seizures a day. I feel like I am starting to get control of my own life again. I still do not have a name for it, besides calling it a seizure disorder. As much as it would bug me, I may never have a name for it. I think I can live better with less seizures than having a name for it.

Maybe one day I can come edit this post and have a name or a cure, but until now, I am five years and counting.

How does it work?
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Heather Cotter

Trained elementary teacher training to be a deaf teacher. Getting married this Halloween. Fur mom to a rabbit, Lola, and a cat, Sushi. 

See all posts by Heather Cotter