Constant Fear of Having a Seizure- is this normal?

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I've had epilepsy for 10 years now (i got it when i was 6, and i am now 16). I was recently diagnosed with depression less than a month ago, and less than a week ago i started getting this out of control fear of having a seizure, associating everything that had ever come with one (headache, nausea, double vision etc.) with it.

has anyone been in the same boat or had this problem, and if so, what did/do you do about it?

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  • Posted

    Hi Rebecca,

    I was diagnosed around 10 years ago too. In the past year I found that every couple of months I have a few days in which I feel a bit 'off' - i.e. have a lot of absences and occasionally feel like i'm on the verge of a seizure, but it doesn't actually happen.

    As I say, it's not super regular and only lasts a few days at a time. I went to my doctor and they prescribed Clobazam. This is a pill you can take if you start to feel strange (not as a regular daily medication!) and it can help return you to normality. I suggest you to talk to your doctor and ask if they think this would be appropriate for you.

    It may not be, and how you're feeling could be psychosomatic / a result of medications (perhaps a new one you're taking for depression?) interacting with each other badly. I just wanted to reassure you that that what you're describing is relatable and definitely worth chatting with your doctor about.

    Hope all goes well.


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  • Posted

    Hi Rebecca,

    While I don't have epilepsy, my son has non-epileptic seizures and I can tell you that even I have the same worry-for him. It's understandable that fear of having a seizure will cause anxiety. I've yet to learn to fully deal with the fear, but have learned to take all possible precautions. I bought my son the Embrace monitor, and he sets his phone alarm to take his medication. You have a right to live your life free from nagging worry and fear. I would try to be as proactive as possible and get your rest, eat well, and find a healthy avenue to alleviate stress. Also, discuss your fears with your doctor and those you feel closest to. Best to you.

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  • Posted

    Dear Rebecca,

    I am 65 years young. It is normal to have fear of not knowing when, where, how and if. Life is living one moment to the next. Live life because you only have one to do so. I have had seizures everywhere. Mind you I get upset that a seizure has put a wrench in my life at the time but I get on with it. Being depressed about it is a waste of time. I hate it but it is uncontrollable, even medication has it threshold. I take precautions when out and about. Having seizures is not who you are. It happens. There is no true control.

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  • Posted

    Hi Rebecca

    I have been an epileptic for more than 40 years. over my years I have probably had about 7 full on lights out seizures. That is what I all them anyway.. lol..I was lucky I had a very good neurologist that quickly get on top of it and in a controlled state. After my very first attach and more a number of years thereafter while I was young like you I also had these fears. I did however overcome that and have made a success of my life. The trick is to have a very good neurologist that can get you in a fully controlled state and keep you there more many years.. then you will become confident and believe you can achieve anything in life. Good luck girl.

    let us know how you are doing.


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