My neurologist ordered a repeat EEG (Electroencephalogram), the test for seizures. He suspected I have been experiencing partial seizure activity. I went in for the test last week. Approximately 5% of head injury patients develop a seizure disorder. Generally, the seizures either start just after the injury or a year later. I experienced at least one seizure-probably two- the first week after the accident.
The test isn’t painful but it is uncomfortable. To begin with, if the test ordered is “sleep deprived,” you have to stay up the night before. A sleep deprived test is more likely to pick up the indicators of seizure activity. The brain is fatigued and irritable. The clinician hooks around 12 wire leads to your head. It’s not painful. The connection is on the surface. The test itself takes about 20 minutes. In the first stage, a white light is flashed at different speeds. The clinician is trying to provoke seizure activity. I imagine this can make the job rather exciting, when someone experiences a full seizure during this part of the test. In the rest of the test, you rest quietly. I felt really sick during the flashing lights part. For those of you familiar with the original Star Trek, it rather reminded me of the episode with a torture apparatus with flashing lights was used.
There are different kinds of seizures. The most familiar is the Grand Mal seizure, where an individual loses consciousness and has uncontrolled muscle contractions. A simple seizure is an uncontrolled muscle movement. It can be just one muscle group; for example a hand. The patient usually doesn’t lose awareness. A complex partial seizure involves more complicated activity and might involve more than one body system or a partial loss of awareness. This seems to be the type of seizures I experience. I lose awareness during mine but may still be standing up, moving, etc. My brain goes “offline.”
Fatigue is the most common after effect of seizures. I wonder if this partly explains my ongoing struggle with always being tired. And why I face plant for unexplained reasons. My neurologist started me on Lamictal. Hopefully, it will control the seizures without massive side effects.
This is a good article about seizures and TBI. It explains seizures at a basic level. Seizures and TBI
At one level, having a concrete diagnosis with test results is a relief. I can finally point at something and say,”Here! I didn’t have seizures before my injury. Now I do. I told you my symptoms weren’t caused by depression… “. Ever since my TBI, it has been a fight with the medical providers to have my symptoms and after effects recognized. I was basically told it I can’t possibly still be having problems. It can be a real challenge to find a medical provider who listens to you and looks for a cause of the problem. My neurologist understands that any TBI can cause life long effects. I was unconscious for an unknown period of time after the accident and had significant cognitive symptoms in the days and weeks following. And unequal pupils. Initially, I was a bit more clear, as the swelling hadn’t started. My initial diagnosis was totally blown by medical providers.
On the other hand, having a seizure disorder is a bit frightening. I know I have a more mild form but it still means my life is different from before the accident. I now have to take anti seizure medication, probably for the rest of my life. It’s a serious diagnosis.
My service dog, Riley, continues his training. He is growing and making great progress. In addition to his other tasks, he now has to be tested to see if he can learn how to warn of impending seizures. He will be so much help for me to start having a more independent life. I’m currently having a GoFundMe campaign to raise money to help pay for his training. Please go visit the campaign and learn more about Riley. Donate if you can. If you can’t donate, please share. The larger the reach, the more successful the campaign. Thank you so much for your support.
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