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Emily’s story continues: Now adjusting to tonic clonic seizures

webcam-toy-photo14Emily has shared her epilepsy story before.  She previously told us about her absence seizures but she recently began to have tonic clonic seizures as well. She wanted to share her experiences with you. If you need to catch up on Emily’s story, visit the first post at at: http://livingwellwithepilepsy.com/2013/03/emilys-story-absence-seizures-part-1.html

Emily’s Update:

My life changed on 9th April 2013. I had had a lovely day, I went for a walk in the morning with my friend, then in the evening my sister came to visit. All day I had been saying i was feeling odd, I didn’t feel myself, but I was okay other than that. It was an indescribable feeling though.

It was 10pm when I said to Mum, “I’m not feeling right, I am going to go upstairs.” “Okay,” she said. I wandered upstairs, and into my room. I can’t explain the way I was feeling at that point, but things around me seemed to stop moving and I felt out of place. The next thing I knew, I came round lying on the floor, having no clue where I was, who I was and who my family were.

Painful reality

“What’s your name?” they asked. “Where do you live?” they asked again. I lay there, my head pounding from hitting the floor. I couldn’t move, I was cold, I felt sick and so confused. Mum called 111 and they sent for an ambulance with it being my first Tonic Clonic seizure.

My family said they heard a huge bang on the floor, followed by lots of banging on my floor that is above the living room. They left it a few seconds before realising it didn’t sound normal. They found me there, shaking on the ground.

I got admitted to a&e (accidents and emergency, or Emergency Room) where they monitored my increasing heart rate and blood sugars. This was when I was diagnosed with Tonic Clonic seizures. I have now been put on Keppra as well as being on Lamictal.

Things have been rough, and these seizures are very different to my previous ones. But they are less frequent now which is great news.

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3 Responses

  1. LadyLike
    | Reply

    I can completely relate to having to adjust to tonic clonics. Mine started at almost 30. I’ve had 8 (known ones) in 8 months. We’re still trying to figure everything out as this is all pretty new to me. And I keep wondering how many I may have had that I am completely unaware of. I still don’t remember a single one. I feel as if mine may possibly have started as the result of a prior car wreck but also wonder about the occasional moments of intense lethargy growing up. I’ve almost always had a hard time waking up regardless of the number of hours I’ve slept. I’m hoping for a long ambulatory EEG to help find out more. I haven’t had many that I know of, but I feel like my postictal phases have lasted quite a long time. My balance and short term memory can be off kilter for about a week. Last time I lost three days to seizure related amnesia. “Came to” in the middle of eating hospital food with no memory of the three days gone by. I kept repeating things to friends that I had told them a few days prior. I’ve never known an epileptic so I was not aware of all the things that come along with it besides the convulsions themselves. Good luck in finding out more about your seizures and keeping them in control!

    • Emily
      | Reply

      Thank you so much for publishing my latest story, it means a lot that other people can see how quickly seizures can swtich. It is very tough but spreading awareness can really inspire other people. And thank you Ladylike, i really hope you get some answers, take care! Emily x

  2. April
    | Reply

    Hi my name is April, I’m 35, and had my first time ever seizures 5 in one night, while asleep, thankfully my partner was there because I would pass out after each. Being unconscious between them. She rushed me in to critical care, and then sent for an EEG, now waiting on results, I’m now on the dilanton, 300 miligrams, and it’s taken me almost 3 weeks to recover, it’s hard to adjust to the fact that lifestyle gonna change.

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