Epilepsy: My unseen journey
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Health and Wellness

Epilepsy: My unseen journey

The doctors said I was fine. I said I needed help.

Epilepsy: My unseen journey

All of the measly 20 years of my life, I had been healthy. I was never the sick child. Sure, I had the occasional strep throat or the common cold, but nothing that ever required me to see a specialist. I was always praised as the 'healthy child'. That changed in the blink of an eye.

I was enrolled in college at Morehead State University in the 2016-2017 school year. I came in to university thinking this was my time. I was going to succeed and make the world mine. The week of April 10th, 2017 was a nightmare. That weekend, I had taken a trip to Louisville, Ky to see Panic! At The Disco at KFC Yum! Center. I enjoyed it, wholly. I sang every note and danced and jumped at every beat. I was exhausted upon leaving, but that's to be expected. I remember getting into my car with my best friend and she began to play music. I remember my head hurting and asking her to turn down the music, as I was dizzy and disoriented. I don't even remember this happening. I was told weeks later by my friend that accompanied me; imagine my surprise. I figured I was probably sick from not eating or drinking much. Now, looking back on all of it, I wonder if maybe I was triggered by the lights around the arena and it led to what happened the following week.

On Sunday, it was a normal start to my week. I wasn't feeling up to par, but given we were fresh back from Spring break, I wasn't expecting to bounce back immediately. I was experiencing weakness on my right side and a migraine that would not budge. That was unexpected in every sense. My arm felt heavy and in all sense of the word, weak. My mother asked me to go to my GP, as this was very unusual for me. Upon calling my GP, I was directed to the emergency room as my birth control had strokes as possible serious side effects. This started my journey of an unseen disorder that was dismissed for a year of my life.

I was seen in three separate emergency departments within a week as my symptoms seemed to get increasingly worse. I was stuttering so bad that I couldn't get a single word out, I couldn't walk without feeling like I would lose my balance and fall. I couldn't write or type as the coordination in my hands was obliterated. My cognitive brain functions were lacking severely. I could not remember simple words and had trouble stringing words together to make a coherent sentence. All signs of a stroke. Unfortunately for me, all tests came back negative and I was told that I probably had a complex migraine and to take some excedrin and I was sent home with instructions to see a neurologist if they got worse.

Oh boy, did they.

After a week of missing classes to be seen in the ER for up to 12 hours at a time while they ran test after test, I decided it was best for me to contact the school and withdrawal for the remaining of the semester. I was devastated, but whatever this was, was not going away and I needed answers.

I made upwards of 20 phone calls to neurology offices near me and each and every one had a wait time of up to 4 months for new patients. I was fed up and decided to make my way to a neurologist that was 2 hours away for a possible answer. I was tested for every condition known to man-kind, it felt like. I underwent CT scans, MRIs, MRAs, numerous blood tests, ultrasounds of my carotid arteries, echocardiograms, halter monitor tests, sleep studies and all tests were inconclusive. No surprise. My neurologist decided that I probably did just have migraines and was convinced that was all it was. I was placed on muscle relaxers 4 times a day, at one point, to try and relax the arteries in my head to relieve the pressure I was feeling. They didn't help. They never did.

After 8 months of inconclusive tests and theories, I was placed on nortriptyline, which is an antidepressant that we used in hope of helping relieve my migraines. Luckily for me, this medicine helped to take the edge off my headaches. I was grateful, but the other symptoms still persisted. In December of 2017, my neurologist suggested we try a sleep study to check for sleep apnea and an EEG, even though he specifically told my family and I that he didn't believe I was having seizures. He was essentially throwing tests at my imaginary wall to see if anything, stuck.

I remember going in for my sleep study and being nervous. I was hooked up to so many wires, I most definitely could not move while sleeping. I had an oxygen sensor in my nose, an EEG on my head, and an echo running all night. I was terrified but also needed answers. Unfortunately, they didn't come that night. A week later, I was in the hospital for my EEG test. An EEG, is a test that uses electrodes to trace brain wave activity throughout different areas in your brain. I was hoping that test had my answers. I knew even if it did have answers, that it was only the beginning to another whole journey. During my EEG, I was asked to make myself hyperventilate and I had bright, white lights flashed straight in my eyes. It was uncomfortable, to say the least. I remember walking out the room feeling different. I was dizzy, disoriented and confused, but I shrugged it off as at that time, the only seizures I had heard of was grand mals. I thought the reaction was normal for having strobe lights essentially shined right in your eyes and I proceeded with my day.

I never heard anything from my neurologist until February of 2018. At this point, it had been almost a year since I left MSU and I felt that it was time to move on with my life, even if I didnt have a diagnosis and still felt like utter shit, most days. It was a Sunday, February 4th to be exact. I was scheduled to start Cosmetology school on the 5th,when I received a call from my neurologist's nurse explaining I needed to come in at 8 the next morning for an emergency appointment. I was told over the phone that the EEG showed I had abnormal seizure activity in my brain and that it was very unexpected. I had to postpone my start date and I was headed to Cincinnati for my neurology appointment. I was terrified. I sat in my car and had an anxiety attack because I was scared to even walk into the office. That day changed my life. I was told that I had temporal lobe epilepsy and it was caught on my very first EEG. That started the whirlwind of medicine trials, monthly check ups at the nuerologist, epilepsy journals, daily medicine to try and control my epilepsy. I was exhausted. I had an answer, but it was an answer I was scared of, my whole family was.

My point of this story is to say, you are never alone. There is always someone who is striving for you, striving for answers. Sometimes though, that person has to be yourself. I was told in those 10 months of unimaginable pain, anxiety, and depression, that I simply had migraines and generalized anxiety disorder. I was brushed off several times by my GP. I now have a diagnosis, I'm back in college to finish my Sociology degree, I'm my own advocate and I'm not scared anymore. It's been a journey, but it's one I needed to take and I wouldn't change it.

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This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
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