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PTSD And living with Epilepsy

Hi,

I was diagnosed earlier last year with epilepsy after having my second seizure.

I had my first in 2019 but wasn't treated until I had my second.

Annoyingly the conclusion after my scans that there was no "active epilepsy" found but because it was my second seizure I was being treated for it. So here I am, at nearly 30 wondering how I have only started now. I guess a lot of people are in the same boat.

The first time, I don't remember a thing but, that might be to do with the fact I collapsed and bashed my head on a pool table.

The second time, May last year I was sat on the sofa and I remember it all. The sensation, the thought I was going to die and there was nothing I could do abut it. I also remember seeing my partners face thinking it may be the last time, and then black. Done. Gone.

Thankfully I woke up. I do however suffer with flashbacks and it gives me pure anxiety. I start to think what if this happens when I am alone, what if I'm in the shower, what if I'm driving.

I take medication but I really struggle to get this out of my head.

I don't tell anyone this in my family because A. I don't think they understand and B. I don't want to be a burden and worry everyone.

I take medication anyway for depression which is Sertraline and meant to treat PTSD but it won't go away.

I also find that since my first seizure I just can't retain or learn new information as well as I could before.

Does anyone else have this / have any advice how to deal with it ?

It seems like epilepsy isn't really talked about enough and to be honest, before I was diagnosed I was pretty ignorant towards it too. I can't blame people for it as I was like this myself.

  1. thank you so much for being vulnerable and sharing your experience with the community - medical PTSD is real and dealing with this alongside epilepsy cannot be an easy circumstance to navigate through - so please know, we are here for you as a community to provide support and resources that we hope you find helpful. I found a few articles that you may find helpful:
    https://epilepsydisease.com/clinical/medical-ptsd
    https://epilepsydisease.com/mental-health


    We are wishing you the absolute best in your journey with epilepsy 💜

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