Epilepsy

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Hi guys,
Just wondering if any of you guys have any experience with epilepsy. I'll be honest, I know nothing about it apart from that people have seizures, foam from the mouth and are affected by strobe lights and flashing images.

I was hospitalised following a "blackout". I remember nothing from the black out, but apparently I was aggressive, angry, very disorientated and confused and very upset. My boyfriend, naturally, was terrified but I knew nothing about it the next morning when I woke up. He told me he tried bring me to hospital but I was having none of it.

The next morning, I was grand when I woke up but throughout the day I seemed to be drifting in and out of making any sense. I went to hospital and they admitted me, I was really confused, rambling, not making any sense, not finishing sentences because I'd lost my train of thought and couldn't do easy things like minus 15 from 100 or whatever. I was conscious the entire time that night and following day, no 'seizures', just no memory.

They've done two scans, one showed up something, one didn't. Now they're talking about a lumbar puncture, but the dr suspects its epilepsy. And since my memory goes when it happens, I have no idea if its happening to me at night when I'm alone, so I don't even know if its a regular occurrance and that's scary.
I've recently moved in with my oh so hopefully he'll know if its happening.

I've tried not get bogged down with it today, but just googling it makes it seem terrible. No driving. No more clubs. Just doesn't seem fair, that I'm 25 and only getting it now.

I'm not Looking for medical advice. Just peoples experience with it

emzolita

the flashing lights and foaming at the mouth is a bit of a stereotype tbh. Only 3-5% of people with Epilepsy are photosensitive, so clubs may not be out for you just yet.
you could have experienced a partial seizure rather than a stereotypical "fit"
If it is Epilespy, you should probably cut out your alcohol intake, definitely if they are trialing you on different drugs.
It could have been a once of seizure, so you may be back driving sooner than you think. But if you are diagnosed with Epilepsy you can drive again once you don't have a seizure for one year.

You have probably had seizures all your life and put them down to strong "deja vú" feelings. (a complex partial or aura can sometimes feel like this )
Look up that website I linked and read all about the different types of seizures, and try not to worry. I was diagnosed at 17, I took up to 40 seizures a month. I'm now seizure free, working, driving, go out with my friends, and go on holidays.
xx

paddie9

Hope things are going well for you now. There are a load of things that cover the spectrum of epilepsy. I started to take seizures at 22 and like you thought it was very unfair.
I continued for a very long time in that vein of thought and was depressed. Medical advice I can't give you, but I would advise to look after the psychological part of it too. Doctors don't seem to understand how big a change it is for you in your life.

Sunny.Days

Hi LexieOnRale,

I hope things are starting to settle down for you now.

I was diagnosed with epilepsy aged 12, and agree with other posters in this forum - doctors dont realise how much it affects your life. I didnt realise that I had been experiencing symptoms for up to two years, having very slight blackout moments. At that age I was up to my ears in talks about 'becoming a woman' and 'how everyones body changes differently' I was too embarrassed to tell anyone because I thought it was all part of puberty!! Its quite funny to look back at that part now.
Then, like I said aged 12 I had my first blackout seizure. My sister was in the house and heard me collapse. What I didn't know was that my Mum has epilepsy, so she suspected that was what was happening. When I regained conciousness I started screaming as I didn't recognise her. What I've learnt with seizures since is when I regain conciousness it still takes a good 10 mins before I come out of the actual seizure. I can sit there talking absolute sh.t to whoevers with me.
Anyway, there was a good few years of trying to get the balance right with meds..that was a pain but persevere through this and at any time you feel like a certain medicine doesn't suit you, speak up to your doctor!
Luckily, its been 8 years since my last seizure. I learnt to drive, even went travelling for two years! With a LOT of medicine in my backpack!!
I agree that you should stay away from the alcohol, I only started drinking at 18 when I was well and truly happy the seizures had stalled and I had learnt what my triggers were. Even then I wouldn't go over board with drink.
Don't be afraid to talk about it either, you'd be surprised at how common it is! In our house alone my Mum, one of my dogs and I have it!!

All the best

cassid

I have a child with epilepsy, diagnosed at two. It started with twitches in his arms and then spread to his face and other arms. He used to fall over about 100 times a day and tick every few minutes .He is on medication since 2 and doing super, the odd break through seizure when he is unwell with high temps but apart from that he is grand.

Keep well xx

73trix

Has anyone experience of infantile spasms? My 14 month old has just been diagnosed. He seemed to be ticking along well enough developmentally albeit a little behind but not much. I'm told he is in the better cohort as he is developing Ok but naturally I'm concerned about long term affect on his learning etc. Does anyone have any postive outcomes stories?

paddie9

73trix wrote: »

Has anyone experience of infantile spasms? My 14 month old has just been diagnosed. He seemed to be ticking along well enough developmentally albeit a little behind but not much. I'm told he is in the better cohort as he is developing Ok but naturally I'm concerned about long term affect on his learning etc. Does anyone have any postive outcomes stories?

Sorry I don't, but it seems to deserve it's own thread. keep chasing the doctors and see if you can find if there's a underlying condition causing it.
I wouldn't take any specific advice online.
Best of luck