Epilepsy information

I never really posted much before but now I am coming off my Keppra I wanted to come back for some advice. Well I have never really been overtly affected by my simple partial seizures but last summer I had 2 TC's not long before getting up time so my dad had to deal with me. This worried me a bit as my dad had never seen me like that as the one and only TC I had was 11 years ago when I was 16 and my mum dealt with that. My neurologist gave me 4 months to be clear of TC's and start Lamotrigine (again) then I could come off my Keppra as I don't think it's helped me other than weight which is never good for a girl lol. Anyway just waiting for my prescription to come through then I can start to wren myself off it.

Sorry for the long paragraphs but I don't know any other people with Epilepsy so I like to ask for advice. Hoping that coming off the Keppra will be ok as coming off Epilim was a nightmare.

Hi as well to you Dewi, I'll try and post more often now

I remember coming off Epilim and going onto Carbamazepine, can't remember if I had a bad time but I think I was quite moody for a while and used to get double vision wihtthe Carbamazepine at first for a few hours but that stopped after about 4 months.

Had no trouble changing from Lamictrigine to Keppra and Keppra seems to suit me, but I have become more short temperered lately, could be cos they had to take me off Carbamazepine cos of oesteoperosis and put me on Clobazam instead, or it could be old age. I get the same number of seizures so it's no worse, mainlu just sps and cps. The sps don't really affect my life but the tcs can be a nuicense, still, they're an embaressment more than anything and I've never driven so so I don't miss a car and luckily hae a husband who can drive, but that might not always be the case, so I'll probably miss having one if he can't drive or if he pops his clogs first, and men usually do

Anyway, all the best.

Welcome back to the forum Alix, take care luv Juliexx

hello, my name is Julie I am a Mancunian living in Kent, Well i am a Musicogenic at leat that what the neuro surgeon called me. Basically certain types of music like the 1970 guitar riffs that I grew up with and loved in the 70's Anyone there will remember led zep (my favourites), Deep purple black sabbath etcetc. i thought it was the head banging that caused me to feel disorientated with deja vus etc until I was reffered to my local hospital in Bury then to KIngs college, I was told I would meet cosmopolitan neuros in London who had been there done that read at uni etc. Bury Lancs is a lovely mill town that does its best but very provincial and they recognised this by referring me onto LOndon bless 'em. Well after lots of videoing me having fits to Thin lIzzy's 'Don't believe a word' They played back the video and watched where the fits were coming from ( iwas wired up as well I had to wear a swimming hat with wires underneath Now someone from another hospital had got wind of my condition from Bury general As it was explained to me a consultant from this hospital had read about my form of epilepsy and told me he could put me on his CV and become well known and I could trust him completely he introduced me to his team and I am now cured except when tired I feel lousy and have to be careful,
Good luck to all of you still suffering the nightmares of Temporal lobe epilepsy I wish you love and luck in your jpurney to find cures.

Hi im Jack,

Im from Portsmouth, Ive suffered from TC epilepsy for 18 years now. I thought I would join here to help others/ get advice about this divine condition we have. Just wondering why every single post I make has to be approved by a moderator. Its extremely annoying. Anyways nice to know there are others out there that are not afraid/embaressed about what we have.

take care

Jack

Hello Everyone.
My name is Cheryl i do not have epilepsy but my 3 year old son does. I am still going through the whole it must have been something i done stage.
Waiting for further tests and consultant visits at the moment.
Love this website so informative

Take care all x

Hi Jack, welcome to the forum.

The thing about your posts being moderated before being displayed dates from several years ago now. An earlier version of this forum was attached one weekend by a bunch of little boys with nothing better to do with their time.

They kept repeatedly posting flashing colours in threads, with the frequency set to trigger seizures in people who are Photosensitive - and quite a few members did have seizures because of it.

So the rules were changed to discourage further attacks, and one of those precautions is waiting until a new member has been involved for a few weeks, and posted a couple dozen or so genuine posts.

After that time is up you can ask the Mods to lift your restrictions - have a look at the sticky on the "About this forum" section for the details.

It is frustrating, but necessry I'm afraid, to combat the bored idiots out there who have nothing better to do with their time.


Dave xxx

what sad pathetic individuals there are out there eh? Thats fair enough then, however i assure you i have suffered from epilepsy since i was 9 and its driving me insane not being able to drive and not feel safe because of it.

Hi welcome to the forum Jack & Cheryl, take care luv Juliexx

I'm Genevieve, or Gen. I've got FLE, diagnosed about a year and a half ago but only controlled with a combo of zonisamide and keppra relatively recently. Sounds odd but although I've read posts on here for a while I only plucked up the courage to post myself when the zonisamide finally finally got my seizures under control. Weirdly, despite positive EEGs I was seriously in denial about the diagnosis until I finally got some meds that worked. It was like I needed to get better to be convinced I'd been ill. Unlike a lot of people with E I never lose consciousness during seizures, although I can't talk, I just jerk around and talk gibberish. Not losing consciousness means it feels as if I should be able to stop it even though I can't.

I'm not completely out of the woods. I had some breakthrough seizures a few weeks ago, but overall compared to keppra alone zonisamide has been a revelation and I am doing really well on it. My main triggers were my period and stress, and with zonisamide my period seems to have stopped being an issue which I never thought would happen. I still need to make sure I don't overdo work and other stuff though.

Other than that I have a lovely little girl, a job in a college which I've just about managed to keep together with a lot of time off and a really understanding boss (I've been very lucky) and a very very tolerant husband!

Welcome to the forrum Genevieve. Good to hear things
are going so well for you.

Jake HUGSHUGSHUGSHUGS

MedicAlert "UK"
MedicAlert "AU"
MedicAlert "USA"

Welcome to the forum, take care luv Juliexx

Hi every one I'm Pete. Recently diagnosed with tle, and complex partial seizures, after having a minor stroke, and brain haemorrhage I'm 58 and live in Blackburn lancs, England
I don't know if the strok caused the haemorrhage or if it was the other way round.
It has all happened in the last six months so phew ! It's been quite eventful you could say.
I was a bus driver, drove a car and a sports motor bike but that's all gone with my licences being revoked , things could have been much worse with the size of the heamorage I had. I'm very confused what is going on with the seizures I'm having it is very hard trying to find out what's happening at the mo. I'm on tegretol on a low dose to start of with and they really wipe me out.
Could anyone please give me any info, thanks in advance

Hello I'm introducing myself - I've only just joined although I have had Epilepsy since 2003 . It's only just been classifed as Focal Epilepsy from right temporal lobe . Not that it makes any difference as it is thought to be drug resistant .

Hi Pete I too have had a stroke called a Lacuna stroke in my left Paritial lobe which came as a surprise as I did not even know that I had had one, i found out this year . I too have taken Tegretol in fact I have just come off of it and it does wipe you out a bit at first , but stick with it because most AED's are like that at first . As for driving if you can go seizure free for a certain length of time it used to be a year . You can regain an ordinary licence back although I don't know about PCV licence DVLA would be able to tell you .

Welcome to the forum Pete & Neets, take care luv Juliexx