Through my eyes: Epilepsy diagnosis in adulthood

My first seizure happened while I was at work. At the time, I had only lived in England for 1 year, I was 21 years old, and, as far as I was concerned, I was very healthy. 

There was absolutely no warning before the seizure came on. One moment, I was trying to open a door and feeling a bit weak, and the next thing I knew, I was being taken to the hospital by an ambulance. I lost almost an hour of my memory and have no recollection of what happened.My colleagues told me that I fell into a perfect recovery position, and then, there was a lot of shaking. Once that stopped, I was sort of “awake,” walking around aimlessly and even giggling. It made me feel uncomfortable hearing this story, and I wasn’t keen to find out too much about what had happened.In the hospital, they did a few tests, and I was told that it could have been an isolated seizure, which can happen to anyone once during their lifetime. To be honest with you, it didn’t feel like a big deal. I felt okay that same afternoon, so I brushed this experience off and moved on.I wanted to be positive, and I definitely didn’t want to have epilepsy. I always assumed that it was a condition that people develop during their childhood, so how could I suddenly develop it now?

My second seizure

One afternoon, about 10 months later, while I was walking outside, I suddenly started feeling really scared, like I was about to lose control over my body. I knew something really bad was about to happen, and I didn’t know what to do.I looked around, but there was nobody on the street. I was completely alone. I felt a huge amount of panic and started walking really fast. I didn’t know what was happening, and the panic was rising.Now, knowing more about epilepsy, I know that this feeling of extreme dread was a symptom called aura that some people experience before they have a seizure.The smart thing would have been to sit down rather than keep walking, but I couldn’t think clearly. I had never felt like this before in my life.I woke up about 50 minutes later — again, in an ambulance. Because I was walking so fast while the seizure came on, I fell very hard, hitting my face on the hard concrete pavement.

I was bleeding on one side of my face, and I could taste blood in my mouth. My lips were swollen, but luckily, I didn’t loose any teeth.

The paramedics asked me whether I knew my name, what day it was, and the other usual questions. I was definitely in shock, because I started taking selfies of myself and of my bruised face, so I have this whole collection of selfies in the ambulance. I am even making silly faces in some of the photos, so they are quite funny.I was told that there were six people looking after me who called the ambulance and waited with me. Apparently, my seizure lasted about 25 minutes. I am very grateful to these kind strangers for getting me help. I have never seen anyone having a seizure, but I can imagine it is quite scary to witness.I spent about 7 hours in the hospital that afternoon. I had an ECG and other tests and consultations with different doctors and nurses.That evening, I was meant to go to my favorite Italian restaurant for dinner with a friend of mine. She came to see me in the hospital, and when I got discharged, I was really hungry, so we walked straight in there, and I sat in that restaurant with my swollen face, eating a bowl of spaghetti. Can you tell that I am someone who doesn’t like to change their plans?In the following weeks, I got referred for a CT scan and an MRI, and I had several doctor’s appointments to discuss what happened.I vividly remember a conversation that I had with my epilepsy nurse one morning at 8 a.m. It was a checkup appointment. We were discussing my condition, and she asked me what I knew about SUDEP.I had never heard of it before. She explained that SUDEP means a sudden unexpected death in epilepsy and asked me whether I wanted to know more about it, insisting that every person with epilepsy has to know about it. That was one of the worst mornings I have ever had.After all these tests and appointments, my neurologist finally gave me an epilepsy diagnosis, as suspected, and I was put on anti-seizure medication. This was probably the hardest part of the whole experience, because the medication was making me really sleepy, and it was hard for me to stay focused when I was at work.SOURCE: MedicalNewsToday.com Written by Iva Moutelikova