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Georgie B

Georgie B

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Hi, people my name is Gina and i lve in northampton, i would just like to find other people living with epilepsy and speak to them about their experiences. I don' know anyone with epilepsy so I feel quite alone sometimes. I don't know how to cope with somethings. It'd just be really nice to get to know someone else with epilepsy and get some things off my chest. I barley get any support from my parents, I've never been able to speak to them about it, my boyfriend and his family have been amazing they were there when i had my seizures and i can speak to them about everything, however I would just like to speak to someone else living with this condition to see how other people cope :)
Thanks Geogie B!
 
hi geogie b

happy new year, im sharron my daughter as epilepsy so i cant answer certain questions , but as a mum my experiences with epilepsy are scarey , frightening , frustration and anger. I tend to do the worrying for amy , which i except , i no that i should let amy take control, as it is her responsibility , i tend to wrap her in cotton wool .

The only time we argue or should i say discuss very loudly is over epilepsy, it takes over to the point when it consumes everything . When she has a seziure its like no one can relax in the family , she rarely on her own , maybe a couple of hours in the day or when she in bed . She gets so annoyed when my first reaction to a phone call is "whats wrong " not the normal reply like " hi ya " . Im trying to relax a little , thats going to be my new years resolution .
 
Hi sharron, Happy new year :) my partners mum experienced my seizures and has been there for me the entire time, i can cry, scream and shout at her about how i'm feeling which is fantastic i love that. However i wish i could discss it with my mum and dad, they carry on like my epilepsy doesnt exist, in a way i wish my mum was like you :) at least i could talk to her about it. can i ask? how old is your daughter and what type of seizures does she experience? thanks sharron.
 
Hi and welcome.

This is a great forum for understanding, support and the things I've learned here has helped me so much.

I think there are several of us (including me) where for what ever the reason it's our parents that seem to have the hardest time with E.
I know everyone wants a normal healthy baby/child but this is the way it is. If only our parents knew how badly we need them.
 
Georgie B

Welcome to C.W.E. Georgie B there are a few of us here with epilepsy you can talk to and we will try to answer your questions. It's not easy for people to accept or come to terms with epilepsy.
 
I am looking forward to getting some advise and some understanding, I struggle to understand myself some days let alone my parents or anybody around me thanks guys :)
 
Georgie B

We will all try and answer any questions you have, we all struggle to understand at times. Parents are a whole different ball game.
 
My main question is has anybody experienced any side effects from tegretol? I am currently changing medication and am slightly concerned as my neurologist mentioned that it could actually trigger tonic clinic seizures? Is this a major risk?
 
Georgie B

I was on tegretol and found no side effects like what your describing but you should always look up the side effects of every medication you are on or being changed to yourself. I never heard of tegretol being a trigger and I have Grand Mal seizures. Then again what effects me is different from what could effect you, I find it unusual for a neurologist to say this to you.
 
Fedup
Thankyou for your reply, I've had bad side effects to all 3 previous meds I just wanna get one right, I want this one to be ok and fix me :)
 
My girl has just turned 22 dec 17th . I first noticed amy day dreaming , to an extent were i thought she was being rude . I took her to our gp and told i was an over protecting mum , and that amy was a lonley child . This carried on for years ( she was about six when that started) . Then she experienced her first episode when she turned 15 . Again told that its probley a one off . It wasnt it happened again, this time i refused to take her home from the hospital, which was the hardest thing leaving her . She stayed over night and the doctor did his rounds and witnessed amy day dreaming . He aranged for us to see the neuro dept , had the usual eeg which showed spikes and mri scan which came back normal . Amy was then diagnosed with peti mal in the begining and now she has t/c . She now is taking 750 morning and night (genetic keppra) and 300 in the morming of lamactal. Its hard on a parent i think anyway , you blame yourself , i did . I followed all the rules , i never smoked im not even a drinker . But there is always that doubt , especially when my sister had three children , all grown up now . Im glad you have some one you can rant and rave at and who,s there for you . I hope amy can find a nice lad with a loving family like you have found . Treasure them and hold them close . You will have great support and advice on here.
 
Georgie B

Please do not be disappointed, I mean this in a good way getting something that is a med that suits you is most often trial and error. It can be hard to find something to suit you and when you do its a high. But you must always watch out for the side effects.
 
Jonsey, I myself had suffered similar things like you have described back in primary school, it happened many times in manus different circumstances and each time the hospital sent me home saying there was nothing wrong me I was nearly 19 when I suffered my first t&c I lost my license which is critical for my job, I expected my boyfriend to run away but him and his family have been the rock that have kept me going, I'm sure without a doubt that you daughter will find someone how respects her for who she is and will be by her side no matter what :):)
 
Fedup, I understand this as I refer it to my job role, I am a very complex brain my brain itself cannot speak and can't tell me what it needs however the drs have a pretty good idea ill let them sort it :)
 
Hi georgie
My name is jade and Im from near you Im from Burton latimer/kettering :)
Im 23 and Dont yet have a diagnosis as i keep having normal results on tests ... 2012 i had 26 or 28 admissions to hospital by ambulance and most of them were status t/c's that had to be medically stopped ... Ive been off work since March 2012 and really worry about the bills :(

I know how you feel when you have no one to talk to sometimes friends Dont understand what were going through ...this place is great lots of nice ppl and lots of advise Xx
 
Georgie who's your neurologist ?
Dr Paul Davies ?
Dr tarunya arun ?
Dr s wimalaratna ?

Any of them ?
 
Hi jayde 101 I too suffer from t&c's I was signed off of work for 2 weeks after each of my seizures and due to meds side effects I was signed off for 4 weeks I really struggled to get going again I was myself for ages but my friends and my partner and his family were fantastic through everything work eventually understood what was going on, I am under Northampton general hospital not Kettering my neurologist was dr nithi have you had an MRI? And can I ask how did they medically stop you seizures?
 
Oh Im not aware of the neuro ...
Ive had loads of eegs and a mri :( all clear
Either by intravenous diazepam or rectal diazepam ...

Im now taking epilim every day and touch wood seems to be helping ... I just surrendered my liecence :( so now i have to get but to work ... When they finally let me back ... :(

How often were you having seizures are they controlled now ?
 
They managed to diagnose me after an EEG only had an MRI when I started To go backwards where do you work what sort of industry? My place where wry supportive as I said . I was having a seizure once a month and they controlled it as soon as they put me on meds however I've been and two lots and experienced bad side effects on each one so they are changing them again :/
 
Epilim is my first med and thankfully its working ... Just getting wacky dreams but hey ho
I work in boots in kettering in pharmacy :) how about you ?
 
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