Epilepsy

I had a tonic clonic seizure a couple of months back and for some reason this one particularly panicked me (perhaps because I now live alone - I don't remember doing this, but I called my family who live an hour away at 9pm and actually came to get me and take me to A&E (and clean up the blood in the bathroom...)). Now whenever I get a headache I worry that it is the beginning of another seizure and it is beginning to be a vicious circle.

Does anyone know how I might be able to relax a bit more about it?

Thanks,

Moi

I was diagnosed with epilepsy when I was 19, and it has been an extremely stressful and worrying journey. My first TC seizure, I woke up at the bottom of the stairs in my bedroom without even any recollection of leaving my bed, let alone the seizure. In fact, it wasn't until much later that I even realised that I had had a seizure, and I just that I must have fainted or something. It took me a long time to get seizure control, and my friends had to be trained in administering buccal medazolam as my seizures were long and severe. I was so scared, especially because during the holidays I lived alone in a house in the middle of nowhere.

Do you get auras? I found some comfort in that - once I had learnt to recognise them, I knew to put myself in a safe situation. Sometimes I was even able to tell people I was going to have one.

Epilepsy is scary, because you are not in control of what is happening to you, you can't prevent it and you don't always know when they are going to happen. I found that if. I concentrated on the things that I could do - getting plenty of sleep, keeping stress levels low, eating and drinking well etc - which made me feel better about the things I couldn't control.

Getting control was a long and hard process for me. I really hope that when you go back to the neuro, they will be able to help you find the right strengths and combinations of meds. I think this will make a world of difference. Don't give up, and don't let it stop you from doing the things that you enjoy xxx


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I don't really think this is something you can relax over due to how unpredictable it is.

I had undiagnosed nocturnal epilepsy as a child. I remember one night not being able to sleep. I then woke up and was told I'd had a seizure. Mum only knew because my sister & I were sharing a room, I'd fallen out of bed and my sister couldn't get back in. (we had bunk beds then)

My dad has epilepsy and he's lucky that his is controlled fully and he's not had a seizure in 9 years.

How many times do you get a headache (without then having a seizure)? Is it not sometimes worth reminding yourself that sometimes it often is just a headache and to try and relax? Easier said than done, I know.

There is a technique called mindfullness that can be used when feeling stressed or anxious. It's about being mindful of what is happening in the moment, including our thoughts, allowing us to better manage them

http://bemindful.co.uk/about-mindfulness/

I actually attended an Epilepsy Action seminar last month (I was volunteering for them at the event) and the final session was on mindfulness and how it can be used to reduce anxiety and stress (and therefore, potentially, seizures). Very interesting.

I am very happy for your dad Is the epilepsy in your family hereditary? I think it is something pathetic like 30% of people with epilepsy get full control. I have tried learning to drive twice.

I have come to terms with the fact I have epilepsy. It has been so long. It took a lot for me to get where I am, but now it seems like I am starting from the beginning.