Is this true? : I've heard or been told that... - Headway

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Is this true?

keeley24 profile image
19 Replies

I've heard or been told that everyone has some sort of seizure very soon after head injury. I know a few people who have had seizures after head injury and recover fine with no epilepsy. I go to a BI group and woman that runs it said everyone has seizure after head injuries tho most are just one off and you never have another. The man who set the group up had seizures after his BI and had to be put on medication incase he had epilepsy but turns out he doesn't. Also a woman who had BI early this year had seizures soon after so cant drive at minute incase she has epilepsy. I was warned there was higher chance of seizures after BI and did read up on it a lot at first. I know early seizures often are one offs but seizures later on likely mean having epilepsy. Luckily to my knowledge I didn't have a seizure but after hearing everyone has one at first made me curious.

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keeley24 profile image
keeley24
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19 Replies
RogerCMerriman profile image
RogerCMerriman

I’ve never had a seizure and while a brain injury does increase the risk, it’s less that you might think and plenty of other conditions have higher risks.

paxo05 profile image
paxo05

I was told I suffered a seizure at the time of my rta. I wasn't told until some time later. I had absences that were eventually diagnosed as epilepsy.

Thankfully through various medications it has been kept under control.

But ithe is true a bi does not mean epilepsy.

Pax

cat3 profile image
cat3 in reply topaxo05

Liking the profile photo Pax. Great to see you ! 😖 xx

paxo05 profile image
paxo05 in reply tocat3

Yeah finally found out how to do it. Not most flattering bit hey.

Will ty a better one soon.

cat3 profile image
cat3

Hi Keeley. There are many folk here with long term BIs who have never had a seizure, nor epilepsy, and my impression is that those who do are in the minority. It'd be interesting to hear what the actual statistics are.

Maybe we should arrange a poll............... 📊❔

Wittycjt profile image
Wittycjt

Nahhhh!

Ro_76 profile image
Ro_76

I had one a few weeks before my one year of no seizure was due. Had a seizure at the time of my injury so hcad to stop driving because of it. But then the second meant another year of no driving too. I have been put on lamotrigine and one more year on I haven't had a further seizure. I was told that due to the area of my brain that is damaged it can cause this. But it's difficult to diagnose epilepsy when a seizure hasn't been witnessed by anybody like with myself, as I live alone. But I would say it's not a definite that following a brain injury that epilepsy will happen.

Take care and try not too worry xx

keeley24 profile image
keeley24 in reply toRo_76

Sorry to hear that. That was my biggest worry at first that I could have seizure and wouldn't be able to drive. Was told to avoid alcohol for first year which I did purely to not risk a seizure. I've since heard some people are told to avoid alcohol for 2 year.

Mikey48 profile image
Mikey48

I collapsed at the time of my SAH although I have no memory of it, That was in Dec 2015. I haven't had any seizures.

lcd8 profile image
lcd8

I have never had a seizure and don't suffer epilepsy.

Matt2584 profile image
Matt2584

No it's not true.

I never had a seizure in the early stages of my injury.

This woman at your BI group is wrong.

Richdp profile image
Richdp

Hi Keeley,

When I was having my haircut a few weeks ago, the girl cutting my hair told me that her brothers best friend was hit by a car when riding his bicycle and suffered a brain injury. She told me he spent 8 weeks in a coma. Now he's living back home with his parents. Apparently he has episodes where he just zones out, kind of out spaced. He was told by a specialist that these episodes were something called mini seizures, which I found very interesting because I suffer exactly the same thing. When I got home I researched this, and found that a lot of symptoms that I suffer are symtoms of mini seizures. The next time I see my neurologist I will ask. I think I suffer mini seizures all the time, especially when tired.

keeley24 profile image
keeley24 in reply toRichdp

This actually made me think of the man that set the BI group I go to up. He's wrote about his experiences since BI and in early recovery he mentions these zoning out episodes. My mum said it's something she noticed in me that I was never aware of. Also only last week I noticed the man who set BI group up like on his phone but every so often staring into space not doing anything. He was tired as you say it's more common when tired. He is back driving so can't see it being something serious as he is fine driving think it was more cos he was tired.

Richdp profile image
Richdp in reply tokeeley24

The strange thing is, I know when I'm having them and I'm aware of what's happening, but I can't control it. I'm concious of what's happening around me..Strange!

sammm2k profile image
sammm2k

I suffered SAH in January 2016 foLlowed by meningitis causing frontal lobe damage. I was on medication for seizures as a precaution but they stopped it in July 2016 as they didn't know if I had seizure or not. I was reluctant to stop but did & to date I haven't had one

keeley24 profile image
keeley24 in reply tosammm2k

Man who set group I go to up had frontal lobe damage too and was on medication to stop seizures but since coming off it been fine. From reading what he went through it sounds like frontal lobe damage is far worse than I had. Not even sure what part of my brain got injured but it only really effected my balance. He had it effect his mind and thinking which took him far longer to recover. 5 years on he seems fine but only been back driving 2 years now.

jentwistle profile image
jentwistle

After my brain injury I remember walking to the toilet in hospital and all I could see was big black dots and everything was flashing in front of me and I always wondered if this could have been a seizure but as far as I know I never had one. Luckily I've had nothing like it since, but I wonder if what I experienced in hospital was a seizure or not?

"everyone has some sort of seizure" every brain injury is completely different, nothing applies to "everyone", except that it's unpredictable

miracleman profile image
miracleman

I am not a Dr or Nurse, and have no formal medical training. In 2008 I had a fall, suffering a double fracture of the frontal lobe of my skull. I was in a coma for 4 days, hospital for six months in total. Had to re-learn virtually everything. I was originally on medication to guard against seizures, I never had one. I understand that not all people are automatically put on precautionary medication if they haven't had a seizure. I have not had a seizure; I think epilim ( sodium valproate) has many negative potential side effects, and I imagine all the other epilepsy medication does. I was not happy when I knew I was on it, months after my accident, I had been a care of people with Epilepsy, in my previous life. Coming off it was a period of weaning dose reduction. 9 years on I would say NO it is not true!

Hope that doesn't come back to bite me! ;)

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