Heidi’s Story

Often, I feature stories from one of my readers who has been affected by epilepsy.
Learn how you can share your story.

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Heidi writes:

heidiHi, my name is Heidi. I was only diagnosed with epilepsy about a month ago, but the diagnosis should have been made many years ago. My story starts at age 18 during my senior year. I was a typical teenager. I slept very few hours, ate little and didn’t care. I remember always being dizzy and not being able to function living like this, but I thought it was normal to feel this way. During a pep assembly I had my first seizure. We were in the hallway warming up as a band and I felt strange. I couldn’t think, I concentrate and I remember not being able to remember how to play my saxophone. The only other thing I remember was turning to the kid next to me to tell him something was wrong and I woke up in an ambulance heading to a hospital. I was told I had had a seizure but I didn’t understand what that meant and I passed back out. I woke up what seemed like hours later to my mom and hospital staff all talking rapidly and not understanding a word they said. The weeks that followed were a blur. I became depressed, couldn’t think. I walked the halls of school in a fog not knowing what was wrong. I began withdrawing and attempted suicide a couple of months later. I was humiliated by the fact that I was the girl that had a seizure and had let the depression rule my life. I got help and life moved forward. I don’t remember a lot of this time. I worked and partied not caring that I wasn’t eating and sleeping again and I ignored the warning signs I so clearly see now. A year and a half after the first episode, I was in the grocery store for what seems like hours. All I remember is wandering aimlessly through the aisles not remembering what I was looking for and then suddenly remember and start towards that aisle only to to get lost and confused again along the way. I remember my eyes twitching and spasms in my arms but again, I didn’t seem to let it register. I woke up in the hospital and was again told I had had a seizure and that i should see a specialist. I had CT scan and an EEG and the results were all inconclusive. They wanted to put me onto Dilantin but I was so terrified of the side effects i stubbornly refused to. Seven years went by without incident. I got married, graduated college, traveled, just lived a normal life. I thought I had “outgrown” my seizures and figured I was cured. I then got divorced moved home and spent each night at a different friends house for a couple of months. I had some things at one house other stuff at another house and the rest in my car. I would sleep 3/4 hours a night and then drink at least 3 monsters every day to stay awake and then do it all again the next day. That July I had my third seizure. I was again in a store talking to my mom on the phone and I felt fine. I got off the phone and I remember suddenly being very confused. I remember looking for something specific and having trouble seeing what I was looking at because every time I focused on something my eyes would shake and my arms would twitch. I remember thinking oh my gosh I’m going to have a seizure but there’s no way…I sat on the floor trying to shake the feeling and immediately felt better … so I stood up and woke up in the ambulance. I was once again in complete denial refusing to believe I had a problem. Then in February I had my final reality check. This one was unexpected and random. I was stressed because of a new job and a new schedule and I hadn’t eaten that day yet but I can’t remember feeling anything but a little dizzy not twitching like before and no definite feeling of impending doom. I woke in the hospital with a blood sugar level of 62 and decided it was time to admit I needed to get help to get these seizures under control, just pretending wasn’t going to fix the problem! It took a month of convincing but I got onto keppra xr. The side effects have been pretty tolerable so far, but finally admitting I have epilepsy has been overwhelming some days. I had another seizure, this time a petite mal a week after starting the medication and a few days later was let go from my job. I’m now adjusting to a higher dose of medication, it makes me confused but so far that’s all I’m having to deal with. I’m still trying to find a balance of how to live my life without letting epilepsy rule me. Most days I feel ok, but my life has dramatically changed. Just getting up and getting ready takes hours. I can’t just wake up and move but i need to slowly adjust to what’s going on. I can’t think logically like I used to and even reading a book is a complicated task. I need lists to focus on what I’m doing or I just space out. Some days I think I should move back home till I get my medication and stress under control then go back to work and move on from there, but my independent mind won’t let me if I can avoid it! I am determined to live MY life, controlling my epilepsy with medication but still working and living as best as possible. I constantly live in fear of having another seizure and I know that with time this will get better because I won’t let it beat me or hold me back! —I have epilepsy, epilepsy does not have me!!!!!
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