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Emily’s Story: Absence Seizures – Part 1

7I sat in class, as my friends and I chatted about how we would love to be police officers. A police officer stood at the front of the room chatting about not talking to strangers.

“Do you know why you shouldn’t talk to strangers?” the officer asked. My hand shot up, I knew the answer. I was so excited to talk to a police officer. But then my vision started to blur and I felt my eyes drifting back. I could hear my teacher say my name to answer the question, but I couldn’t reply…my hand remained up and that was it…I was completely absent…I couldn’t hear, speak or move.“Emily? Emily you can answer the question, put your arm down”

Their voices were faint but I could hear them. My vision came back and I looked around the room only to find everyone looking at me. A few children were smirking and my teacher was looking at me confused, and the officer smiled to let me know she was listening.

I began to cry, I was so confused and didn’t know how long I was absent for. I shook my head and my teacher took me out of the classroom. “Emily I think I need to talk to your Mum, I have noticed you go absent a few times today. Do you feel ok?” How could I explain what happened, if I didn’t know myself?

How could I explain that I wasn’t being rude, and that I couldn’t control my daydreams. “I feel…embarrassed” At that point my teacher went to speak with my Mum, who conveniently worked at my primary school. That is my earliest memory of what is called Petit mal epilepsy.

Petit Mal is an absence seizure, commonly mistaken as a daydream, ignorance or tiredness, which is why my seizures went unnoticed for a while. I have always been a bit of a daydreamer. I use to plan stories in class, get home and jot a whole story out that I had planned in a Math class. But one day, as we were crossing the main road in Belper to go for a walk, I had a seizure.

My parents were walking ahead with my younger brother, and I was walking behind them, talking to them but just walking slowly. As the lights turned from green to red, I went absent, in the middle of the road. I began to hear the horns from the cars, but that is all. 2 minutes that seizure lasted. My Mum took me to my GP a few days later, I didn’t know this but she was watching me at home to see how often I ‘daydreamed’. She calculated a total of 21 absences a day.

My doctor asked me a few questions, for example; “Do you know when you are going to go absent?” or “what does it feel like?” “When does it happen most?” She referred me straight to the hospital where I had an EEG scan. EEG stands for electroencephalogram. It is a recording of the ‘brainwaves’ – the electrical activity of the brain. The nurse told me to blow on a piece of paper, and it triggered off one of my seizures.I was petrified before my eeg, I had no idea what was going to happen, or why I was even there. I remember the lady put what looked like vaseline in my hair, onto my scalp and attached little stoppers to my head.

I was then diagnosed with Petit mal epilepsy and photosensitive epilepsy-although I have photosensitive epilepsy, lights don’t tend to trigger my fits off, they just make me feel like I am going to have a seizure. I was put on a medication called Ethosuximide which I gradually took more of, until I was on the highest dosage to suit me. I suffered from a few side effects like tiredness, weakness, headaches and sickness, but they went away after I was on a secure dosage.

After two years, at the age of 13, I came off my medication and was seizure free. I was really happy to be able to do some of the things I was not allowed to do when I had epilepsy. I no longer had fits when swimming, or running, or anything, I was delighted. A year later, my fits started up again, completely out of nowhere. We went straight to hospital because we knew we needed to get them under control. I was falling behind with school work, I was going absent all the time and I was getting so embarrassed. People laughed as I stopped still in the halls and when I didn’t answer what the teacher was asking.

This time my medication didn’t cause me any trouble and my fits stopped straight away. I was taken off Ethosuximide quite quickly-at the age of 16, my epilepsy returned quite viciously and my fits lasted longer and were more frequent. I was missing a lot of exam work and my paediatrician was worried that Ethosuximide wouldn’t be enough to control my fits as I was getting older, so they put me on Lamotrigine and Ethosuximide.

It was a lot to deal with, especially as coursework was piling up and exams were getting closer. I was violently ill, I had night shakes, sickness, stomach cramps, nightmares, I suffered from hallucinations so bad that I saw clowns and spiders coming out of my walls. It was so real that I thought I was dreaming when my Mum told me there was nothing there.
Next up: Part 2 of Emily’s Story

Jessica K. Smith
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Founder and CEO Jessica brings a unique perspective to this leading epilepsy blog as she was diagnosed with epilepsy as a teen. She also brings 20+ years experience in marketing.

13 Responses

  1. Rita Walli
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    I totally understand – I was on three different drugs at first managed to get off Epilim now on Lamictal and Epanutin(which I’ve halved dosage myself without any probs)would prefer just to be on one drug with less side effects!

  2. Carol sickerman
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    I totally understand. When I was in elementary, I used to stare our the window to control my seizure and the teacher always thought I wasn’t listening, i learned how to multi-task at an early age. In elementar school, I was abe to stare out the window and still listen,

    So today, I’m carrying on conversations and people have no idea I don’t feel well thanks to my early multi-tasking,

    Don’t feel embarrassed. Your teacher needs a lesson on how to deal with children who LOOK as they should be like everyone else but have a DISABILITY.

    Have your mom call the local epilepsy chapter for reading material for as many units as there are teachers in your school. They all need to be educated on how to deal with a student who either is or will be in their classroom.

  3. Emily
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    @Rita, I understand what you mean with the side effects, it’s bad enough being on one medication, but two is, well, twice as bad! I hope you are well. @Carol, My Mum went into college for an epilepsy awareness meeting to let my lecturers knows what to do during a seizure. Thank you for taking the time to read my story, and comment on it. Take care

  4. Carol sickerman
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    You are more lucky than you realize. Your family backs you==mine walked away from me and said many things tamily members should never say,

    You are having an awful time right now as did I growing up. Most of the times things strrighten out. Please hold on to that!

  5. Emily
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    @Carol, they do sometimes forget how difficult it is though, I sometimes have to remind them how tough it is with the seizures and medications!

  6. Alex-ann
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    How cool to hear other peoples stories just like mine! My teachers would call numerous conferences with my Mom because they thought I wasn’t taking school seriously because of my staring. Now I’m in college and I can explain my problem better!

  7. Emily Donoghue
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    @Alex-ann, thank you! : )

  8. Matt
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    Really appreciate your perspective. My daughter is four and it appears she is experiencing absence seizures. She hasn’t had an EEG yet, but all the signs are there. I can’t even stomach the thought of putting her on any more meds. She has already had more meds and doctors visits than I have ever had due to a severe peanut allergy and abdominal migraines. Are the meds the lesser of two evils? The one thing the doctors can’t tell us and neither can my daughter due to her age, is what is it like to be on these meds? Thank you for sharing.

  9. Chlo
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    Reading this story makes me feel so much better. And reading this and knowing other people suffer from absences makes me feel better too. I’ll explain my story it’s kinda hard to talk about because i’m not aware and i never know or remember when i’m going to have them i only know because people tell me so i’ll have to tell you what people have told me. Since i was 3 years old i’m been having spells where i stare and i’m unresponsive obviously with my other problems it was hard for my mum. And i don’t blame her atall for thinking it was just me any mum would it’s very hard when your child has absences. I’m 13 years old and i got diagnosed Friday 24th April 2015. I’ve never been aware of them and i have to take other people’s word for it. Before a while back i felt really dizzy and my eyes felt really weird. I’ve never got those symptoms before a seizure before and it was a strange feeling which frightened me. I have other problems as well which means i have helpers at school for most of the time i’m a hardworking student who loves to read and loves to help others. I have severe dyspraxia which affects both sides. And autism and tourette’s and a sleeping problem which requires tablets at night. Due to my autism . I take keppra at the moment for my absences but it’s just to see which tablets work best for me because i’m newly diagnosed and i’ve been feeling sad and like my life isn’t worth living since the diagnosis knowing people on here have felt like me helped a lot. It makes me feel really tired. I’ve been really teary at the moment. I have loads of seizures a day that’s what i know but i can’t say how many. From other people that have told me i have roughly 3 big seizures a day which last 30 to 1 minute which is a massive length of time for absences. I never know when i’ve had one but what i can recall is my eyes go really blurry before i have one. I don’t know anymore about what happens and that. I know my eyes go weird. Absences are your unconscious for a few seconds but with your eyes open i have lots of massive ones a day as people tell me. Last friday my mum told me that the doctor made me breathe really hard into a windmill type thingy and that induced a seizure apparently my arm was shaking and i looked flushed and my eyes were gazed. I can’t hear people and i am confused sometimes after a seizure but the recovery is usually immediate. I have ocd also. The medication is making me feel sleepy. My best friend is very supportive of my seizures. She has a different type of epilepsy to me where she goes on the floor but she tells me when i’ve had them sometimes and tells the teachers. I told her straight away gave me advice and calmed me down when i got upset i couldn’t ask for a better friend.

    • Emily Sian
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      Thank you Chlo for your lovely response and thank you for sharing your story. My aim is to help and support people with Epilepsy by using my own experience along the way. You’re a very brave young girl and I wish you all the luck in the world on your Epilepsy journey.

      • Aaron
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        I might be having absence seizures . When I was 2 or 3 years old I went to the hospital lots of times . They were finding something wrong with the white matter of my brain. They did tons of Mris and found nothing . I’m kinda curious that it’s still there but it’s a form of seizure . My doctor said that I might have absence seizure but need a Mri done . I don’t even know how to explain what happens . I stare for about 10 secs . I’m aware of my surrounding but when people talk they seem dim. When I wake back up from this episode I don’t remember anything for a few secs like maybe 4 or 5 . I also have massive head aches and get tired when I get done with this episode . I appear fine in the morning but my day goes down to the ground later in the day .

  10. Aaron
    |

    I might be having absence seizures . When I was 2 or 3 years old I went to the hospital lots of times . They were finding something wrong with the white matter of my brain. They did tons of Mris and found nothing . I’m kinda curious that it’s still there but it’s a form of seizure . My doctor said that I might have absence seizure but need a Mri done . I don’t even know how to explain what happens . I stare for about 10 secs . I’m aware of my surrounding but when people talk they seem dim. When I wake back up from this episode I don’t remember anything for a few secs like maybe 4 or 5 . I also have massive head aches and get tired when I get done with this episode . I appear fine in the morning but my day goes down to the ground later in the day .

  11. rebecca
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    I feel so relieved reading this story. For since the 3th grade of high school (age 15 or so) I started falling asleep during class, or at least to me, it felt like that. I am painfully aware of my surroundings and multitask so people don’t see it. I went to the neurologist 5 years ago (around age 18/19) and got tested on multiple sleeping disorders. I slept normally, so they ruled out narcolepsy and that was that. I managed trough univeristy, even tough I fell ‘asleep’ during college and learning all the time. Now i’m working, and its causing a lot of trouble, so i went back and a new neurologist wants to test me for epilepsy. I dove into the subject, watching video’s and eventually stumbling on your blog. This is exactly what was happening to me for all this time, and nobody drew the right conclusions, up till now.

    I still have to get the EEG, but i am hopefull this will be my last test, so thank you.