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Hayley Jacobs

I'm a 37 year old teacher and I have had diagnosed epilepsy for about 20 years.

I was originally told I had JME (juvenile myclonic epilepsy) and it had been well controlled by Keppra for over ten years.

In August last year something changed (we still don't know what the catalyst was) and my epilepsy changed in type and became uncontrollable.

Since January I have had a new diagnosis of Reflex epilepsy which is triggered by thoughts and actions (noogenic and praxis induced if you'd like the science words). This means that if I think about doing specific things (touching, styling, washing or sometimes even looking at hair for example) it triggers a seizure.

I haven't had a tonic clonic seizure for over ten years which is a blessing in terms of my safety, my seizures are simple focal seizures; I'm awake and conscious and can communicate (usually talk unless I'm particularly stressed) but my body has jerk clusters which will only go away if I stop all activity and lie or sit in a quiet place and wait for the seizure to pass.

If I try and do anything too soon then it'll only get worse. I also have to try and empty my mind of the thought as continuing to think about whatever started it, or even other activities I have to do during the day will set me off again. These seizures can last up to an hour or more and they leave me emotionally exhausted and upset.

They also make everyday life pretty difficult when triggers can be things like preparing food, unlocking doors or knocking doors, doing up zips or buttons on clothes, applying make-up, writing etc. etc (the list is very long).

My seizures in this form are currently drug resistant, I avoid my triggers as much as I can but this makes life pretty limited. My children (10 and 12) are amazingly helpful and over the past year they've learned so much about cooking and do it all without complaining. I'm very happy that they are old enough that I don't have to worry too much about their safety when I'm incapacitated.

Sorry that as things stand my story hasn't got a happy ending, I'm hoping that maybe it'll come at some point but drug trials take so much time and are frustrating and tiring in themselves, the side effects are such a gauntlet, almost worse than the seizures.

I'm happiest when I'm busy and not being able to work or run (my hobby before August 2018) has broken me in itself. I started to write a book in January and although I've lost the motivation I'm hoping this will find itself again in September when my children are back at school.

I write a blog about my epilepsy journey for anyone interested and to share progress and thoughts with friends and family (or anyone else who would like to read it).

I also worked from home for an exam board in June and July and it's the happiest and most stable I've been all year. I wish I could feel as full of hope as some other people with epilepsy seem to but I find this really hard. I would love to hear from anyone who has any questions about my unusual situation or who just fancies a chat.

Hayley Jacobs
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