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Epilepsy/Seizures


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I had a seizure when I had the SAH & once in the hospital when they knew they had to operate, Ronnie says that the doctor told him Louise will tell us when we have to operate.

I was on Sodium Valporate for about a year & a half I was told that if I wanted to drive I would have to go back onto it, which is fine I dont drive.

I was told at the Re-hab hospital to stop taking it I'd been on it a year & a half at this time but when my GP got the letter from them he told me not to stop it at once to gradually come off it, thank god he did because I dropped it down every 3/4 weeks & even then (guess you could say) went 'cold turkey'

Another time one doctor said one thing another said something else, the consultant at the Neuro agreed with the GP by the way.

Louise

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Hi Sami,

I think that I had 3 or 4 seizures.....I had one at home when the SAH kicked off and that's when Eric called 999. I had another two in the ambulance and my final seizure was after the coiling.....but, only because the nurses hadn't been checking my sodium levels and they were allowed to go too low and therefore I had the seizure. I can remember hearing the Consultant ripping into the Nursing Sister.....my eyes were shut, but my ears open! :lol:

I haven't had any since coming out of hospital, 18 months ago. I was put on an AED called Phenytoin and I had a lot of side effects..which is apparently very common with this drug.....it's one of the oldest AED's and it's cheap (probably why most of us are prescribed this particular one).....I think that this drug held back my recovery and I was allowed to stop taking it after about 7 months. The Consultant decided that I was having more problems on it and it would be more beneficial for me to stop taking it, but with an obvious risk of seizure return. This is when I started to have anxiety attacks....

I decreased very gradually on the AED's over a long period of time, as the side effects of decreasing were just as bad, as if you increased on the drug. Louise is right describing it as "cold turkey".....it took me about 3 or 4 months to stop completely.

I was worried for a very long time about having a seizure, especially when I came off the AED.....If I felt shaky or spaced out, I worried that it was the onset of a seizure. It hasn't happened so far, but I still worry about it if I'm feeling "wobbly".....it's hard to describe what a seizure feels like...it certainly doesn't hurt, you just feel shaky, "strange" and tired out afterwards. Sami, it's actually very hard to know that you're having one, you're just not all there....sort of spaced out and trembly.....that's what's worrying about them.

I believe that the first 2 years post SAH is the time where you could develop epilepsy.....after this period of time there is still a risk, but that risk decreases. I'm sure that somebody will put me right, if I'm wrong?

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Forgot to say about the incontinence that can accompany a seizure.....I know that you can be doubly incontinent.....luckily, I didn't have double incontinence.....single was enough thanks very much....but that also used to affect me when I was out and about feeling "shaky"......worried about having a seizure and the embarrasment of maybe peeing myself in a very public place.......I still have a thing about going to the loo as soon as I need to, even now 18 months on...

Looking back, I can now see why I developed anxiety attacks!:lol: Mind you, it's quite good to see how much I've moved on since then! :D

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Hi

I've not had a seizure, as far as I know anyway. Certainly not been told that I had any in hospital.

However, I do get very 'twitchy' and can't control this twitchiness. Seems to happen mostly when I'm in bed trying to sleep. Foot will twitch, arm will twitch, sometimes quite violently and I 'hit out' and I occasionally wake myself up twitching....feel a right eejit!! I haven't mentioned it to the doctor yet - keep forgetting (and that's another story - memory!).

Sarah x

:roll:

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  • 3 weeks later...

HI,

I didnt have any seizures/epilepsy attacks post op at all? Was prescribed phenytoin for a year but didnt take a single one for fear of it bringing on an epilepsy attack (god that sounds so stupid-but thats how i felt?) luckily (miraculously0 nothing happened

regards-BIG AL

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Last week I asked the neurologist about whether it was OK to swim and he said definitely. But the whole suggestion (of a link between swimming and triggering fits) was greeted with derision by the doctor treating me at Charing X. Wish all these specialists would make up their mind....

Joan

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Hey there

Think the swimming alone thing is more a case of in case you suffer a seizure when you're swimming rather than the likelihood of it causing a seizure. Some one correct me if I'm wrong cos was planning on starting swimming again!!!

Cheers

TTFN

Sami xx

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Sami,

You're right, if you had a seizure in the pool then it would be extremely dangerous. That's why you need to take somebody with you, just to make sure that you come up...I've been reading on the Different Strokes site, that diving is a "no" unless you get something in writing from the Docs.....again, it's the seizure aspect whilst being underwater.

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Swimming doesn't cause seizures.....but if you had your first seizure in the pool and you were on your own.....basically, you could drown.....the risk of seizures in the first 2 years after a stroke/SAH is quite high. Obviously, the same if your were diving in the high seas.....you just have to use your common sense, the same with contact sports, where a head injury could occur.......let's face it....would you get into a boxing ring or play rugby?

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Hey Big Al

Are you referring to "Twinkle Toes" Rinaldo!!!! :lol:

I'm a Liverpool supporter myself and do curse our lads when they purposely take a dive (Stevie G was terrible at the weekend!)

Well done for last nights match, poor Reading but they almost equalised!!

TTFN

Sami xxx

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  • 4 years later...
Hi

Has anyone developed epilepsy or suffered from seizures post SAH whereas they never suffered before? If so how did it start(ie twitches, spasms etc) ? How far into recovery were you? and how are you now?

Sami xx

Hi x

I'm still having seizures x been taken off my meds it was making me aggresive x i apparently had a seizure whilst in he ambulance. Sometimes i can have many throughout the day and then nothing for days. I'm suffering 2 types ,abscences or peti mal x i think and simple partial seizuresx I'm back in Hull to discuss my meds but not until 4th April.I'm 14 months into recovery and get frustrated about the seizures, My GP tries his best but as he says he is not a neurologist and i have only had one appointment to see anyone in 14 months x I'm trying hard to cope without meds and up to now i'm doing ok x thinking of all x

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  • 4 months later...

Hi I had a seizure after my op then again 6 months later they gave me epilim which didnt work so they increased the strength but gain did not work so put me on lamatrogine slowly but now having a lot of partial seizures so on another med so far is working but ive gotta see the neuroligist this week so dunno wot hes gonna say but its hard for the benefits people to understand this.

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Hi Moonlite,

Do you have an epilepsy support service in your area? If you aren't sure you could Google Epilepsy to find out what's available or perhaps your GP will have some contacts? I am in Scotland so the service I had access to will be a different one. The support workers are very up to date on benefits and would be able to help you with this. They also have loads of advice on other issues surrounding epilepsy.

Good luck!

Michelle

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