Brain injury and seizures

[Charlie90]

Hi everyone. Not posted for quite a while!

I hope everyone is good!

I am struggling abit at the moment

Aquired brain injury in 2019

Have been having seizures which doctors say is caused by gliosis (scar tissue in brain

Was started on keppra weened off this, now taking lamotrigine

Has anyone else had a similar issue?

I am so upset it’s took my so long to claw back small bits of independence

but now have a diagnosis of epilepsy just really struggling to come to terms with this and how much of an effect it will have on my independence!

[Jill777]

Hi Charlie90 I really do feel for you . I hope your epilepsy isn't a regular or often occurrence my daughter has to take tablets for that every day as you just don't know if/when its going to happen. She was told hers is mild. She was also told if she went on the birth pill she needed to tell her doctor. . I hope you find and easy way to manage it all. virtual hugs on its way xxx

[BaronC]

I have post TBI epilepsy myself, first seizure in October 1995. There is a way back from this setback, believe me I know.

You are now on the road to finding the right medication for you, I tried about eight medications before I found the one that was right for me. It's 24 years now since my last generalised seizure and I regained my independence years ago. Stick with it, you will get through this

[Crazychickangel]

Hi Charlie,

I feel your pain. I have an abi from a rare brain infection in jan 20 and now have eplisey as a result. I'm on keppra which had to be increased in Nov last year as seizures were continuing. I don't drive anymore, rarely go out and never alone as would get lost. Social events are a no as so light and noise sensitive and struggle to hold a conversation if lots of background noise. I'm lucky in that I have managed to return to work but from home only.

Take care x

[APAscot]

Hi Charlie. I hope I’m not repeating myself here as I thought an earlier message I had typed had gone through 🤷🏻‍♀️🤷🏻‍♀️ I have an AVM in my head which causes epilepsy. It was discovered in 1988 but it wasn’t until I saw a neurologist in 2006 that I was told I had epilepsy (at that time very mild but caused by the large AVM). I was put on Lamotrigine but in 2009 I had my first full seizure so they added Keppra. In 2016 I had multiple seizures and my neurologist added Phenytoin. I take Lamotrigine and Keppra twice a day and Phenytoin once a day. Everything seems under control now so I’m sure once your epilepsy is controlled you will be able to continue with your improvement following your ABI. Good luck and good health

[sashaming1]

I had a seizure two years after having a brain injury and now take Vimpat to prevent seizures.

[DTBI]

Hi Charlie, I am an epilepsy chap after suffering numerous seizures after my TBI in 2014. I was without a driving licence for 4yrs due to my seizures.After my departure from Hospitals I was initially on keppra and went through a few tablets before I ended up on Tegretol, which I’ve been on for the last 4yrs I haven’t had a seizure.

Key thing for me is hydration and being as careful as possible with sociable alcohol. I can live with it as I don’t ever look backwards, and there are millions of kids and folks worse off than I am.

Good luck with it x