Positive thinking

Beth (14) had another seizure overnight, luckily the laptop recorded it all. She was very sleepy and a bit upset for a few hours afterwards but has no idea it happened except she had blood over her mouth where she had bitten her lip.

On a positive note I have been on the young epilepsy site and ordered a book for me and her to look at ( only £2 p + p ), hopefully this will give us some more insight to this condition and I have an appt in 2 weeks to learn basic life support, emergency medication and lifestyle for people with epilepsy.

9 Replies

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  • Very sorry to read that Beth had yet another attack. Yes epilepsy The Unwelcome Visitor (TUV) can simply pay a visit sometimes with an aura and without notice.

    Has Beth’s bed got an alarm attached to alert you, or does that oh so familiar scream alert you? I believe that someone with uncontrolled TUV can get funding for such a bed. Please check me out by speaking to Epilepsy Research UK

    There are many help groups out there for you.

    Maybe if you request a meeting with the neurologist dealing with Beths case, they might just be able to review her anti-epilepsy drug (AEDs) and make a drug change that could make that certain difference.

    I wish you all well and please keep me updated.

    Regards

    Richard

  • Thank you it’s really good to have people to talk to

  • No problem.

    Here’s wishing you well.

    Richard

  • Beth is really lucky to have you caring for her. Please send Beth my best wishes. I too have nocturnal seizures. They are unpleasant. Taking the right medication has helped me enormously. Hopefully there will be something to help her too.

  • Thank you, she is taking keppra 750 mgs twice a day at the moment and I am looking into funding for a bed alarm x

  • Really hope that Beth can get her seizures under control. I took encephalitis (infection of the brain) when I was 16 and had a number of seizures after it. I am now 24 and had been seizure free for 6 years until last year when they started again. For the last year and a half, I have been finding it hard to get them under control. I am currently three months seizure free since they increased my Keppra. Once they started again I had a very difficult time and was feeling down a lot of the time. However, the last few months I a have been feeling very positive and happy with myself. I have been doing a lot of mindfulness which has given me a different outlook on life and it is making me look forward to the future.

    I just wanted to let you know that there is an app called Headspace which I have been using. I have found it great when I am feeling down and upset as it helps you remember all the great things in your life. It may be something you want to try out for Beth.

    Best of luck to Beth and all the family and you will all be in my thoughts!

    Rory

  • Thank you, I’ll look into that

  • Hope Beth is doing better these past few days. Have you ever tried relaxation tapes when she goes to bed. I remember in university when under a lot of stress for musical performances that these would help me fall a sleep in a more relaxed state and even many years since then if I felt the back of my neck starting to have sensations like before a seizure the music ,or rainforest and similar nature sounds still help me relax to sleep. I feel that by taking most of my meds before bedtime also are more effective for night epilepsy. Being tired afterwards is very common as your body has experienced a very draining episode. You are also sometimes not completely aware of what is going on until after more sleep.

    Many best wishes and prayers for Beth

    Elsie

  • Hi. Beth has been more settled this week . I will look into that thank you.

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