Temporal Lobe Epilepsy and Complex Partial Seizures

I thought I'd share my story with the world, especially those with temporal lobe epilepsy or are suspicious they have it. I had my first seizure when I was about four. Supposedly, my mom thought I was spacing out until I didn't respond to her calling my name. After that, my mom took me to a neurologist and they did an EEG test on me. The EEG came back abnormal, but I was never diagnosed with epilepsy or put on an anti seizure medication. Fast forward nineteen years later: things have been relatively normal except for the past few months. I was losing moments of consciousness without realizing it until I had an episode while driving. I remember being on one part of the highway and all of a sudden I was on a different part of the highway. It wasn’t like I wasn’t paying attention, but I really couldn’t remember anything between the few seconds I lost. I was confused, and forgot why I was on the highway. It took me a few minutes to come to, and even when I did I didn’t feel “normal” again until the next day. At the time, I didn’t realize they were seizures, rather I thought I was having brief psychotic episodes - that seemed more realistic to me than epilepsy because that’s what everybody else said they were. Epilepsy wasn’t even in the back of my mind until I googled “my brain keeps skipping time”. I finally started putting pieces together and thought, “hey, maybe I have epilepsy.” I had a lot of the same symptoms other people had who shared their experiences online and my story was similar to others. It felt like something was wrong with the actual structure of my brain rather than anything to do with my mental state. It was frustrating because I would have periods of time where I felt normal for a while, then I would have an episode and that would change everything. A lot of people didn’t understand (and still don't), I think because when they hear epilepsy they think, “convulsions, tongue biting, and wetting pants” but my seizures weren’t like that at all. They were so subtle to anyone on the outside that they were hardly noticeable. I’ll describe a specific event so anyone reading this gets the idea: one time I was at the gym and I warming up for my workout. I went to do some lightweight squats and right when I did my first one, I didn’t feel right. I put the bar back on the rack and thought, let me try doing it a different way. Before I could even try a different way, I felt an intense fear rush through my whole body and I felt like something bad was gonna happen. I was like, “what the hell, there’s no reason for me to feel this intense fear right now". It was similar to a panic attack except I felt like I had a little more control of myself. I got off the gym floor and sat on the bench near the women’s locker room for about ten minutes looking at my phone so nobody would suspect anything. I was hearing voices that sounded like a bunch of people mumbling but I turned up my music a lot louder so I couldn’t hear the voices. I sat there for a few more minutes not feeling right, and then I thought, "well, maybe I can push through this". I decided to do some cardio and hopped on a bike. The bike itself wasn’t working for some reason. That’s when I heard an angry voice yell at me, “Get out!” I was so shocked that I grabbed all of my stuff, and ran out to my car. I could feel something bad was about to happen. I didn’t turn on my car, I just sat there waiting for the feeling to pass. Eventually, some time went by and I realized that I had lost what felt like a few seconds. I had to look around because I didn’t know where I was, and when I came to I turned on my car and drove home. It’s scary to have these episodes and not know what they are - it really does feel like you’re losing your mind! Basically, all of my seizures went something like this: I get an aura (fear, hearing voices, and not feeling right) then I miss a few seconds. They started to get worse and worse, and soon enough I was having them everyday. I had one in front of my husband, and before I realized what happened he was packing up my stuff saying, “we’re going to the ER right now.” I stayed in the hospital for two days to get some testing done. MRI came back normal, however my EEG was abnormal. My neurologist (who also specializes in epilepsy) said I was having sharp waves every 10 to 30 minutes which was surprising to me. She told me I’ve probably had epilepsy - specifically temporal lobe epilepsy and complex partial seizures my whole life, and it was “declaring” itself now. She also said that people tend to develop it at the beginning or end or a decade, which made sense considering I was twenty-three. She was fantastic and knowledgeable about my condition, and that was quite a relief. Other doctors had shrugged their shoulders at me whereas she had a deep understanding of what I was going through. I got really lucky to have such a wonderful doctor. Since then, I’ve been prescribed Keppra 750 mg. I had to go up to 1000 mg because I started having seizures again right before my period but other than that Keppra has been a godsend for me. It’s completely changed my life. The side effects aren’t terrible, but I definitely notice them. For example, I eat a lot less than I used to and I feel moody sometimes, but it’s better than what I was going through before. It’s been about a month since I’ve been out of the hospital. I’m not working right now because legally I can’t drive. All of my close friends have been supportive of me, especially my husband. He believed me right from the beginning when I would cry to him at night and say my brain wasn’t working anymore. I’m lucky to have these people in my life. He’s been so understanding and sweet to me throughout this whole situation, and my friends come visit me since I can’t drive. I still have a hard time wrapping my head around this diagnosis, even though I’m grateful to know what the problem is. I never thought I would be the person who says, “I have epilepsy”. I knew what it was when I was younger but like a lot of other people, I was ignorant to all the different types of epilepsy and thought it was just body convulsions. I’ve found ways to deal with the fact that this is a lifelong condition for me. I take care of my cats and spend a lot of time playing with them or snuggling them. I also spend a lot of time writing. I’m very attentive to my husband’s needs and I love taking care of him, too. I listen to my friends when they talk about their problems, and give them thoughtful advice. I go out when I get the chance. I don’t drink alcohol or do any recreational drugs (was never really into it anyways). I had a healthy diet before my diagnosis, and I still do now. I think it’s important to put good things in my body, because it’ll help me heal. This post is a lot longer than I meant for it to be - I wanted to share my story and it ended up being a novel. There’s so much more I can write but I’ll spare the details. I hope my story helps some people out there. If you think something is wrong with you, be your own advocate. Spend time researching and try to be unbiased. I fought hard to get to somebody who would believe something was wrong with me and not think it was just depression/anxiety. I'm glad I did, because it turns out I was right. I've heard stories where people don't realize they have Temporal Lobe Epilepsy until they're in their forties or fifties. I'm only twenty three and I can begin managing my condition with medication and therapy. Again, I hope my story helps somebody out there.