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Heidi’s 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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Receive valuable content and personal stories from other women and girls just like yourself.

Disclaimer: Education materials on our website offer general medical information based on up-to-date evidence and, when available, practice guidelines. They are not intended for individual medical advice. Please refer to your treating physician to understand how this information may be applied to your care.

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