what Epilum side effects have you had?

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Westy

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I'm about to start on Epilum and despite the fact it was the first AED i was put on 20yrs ago, i can't recall how my body reacted to it (memory loss is a big issue for me now).
So if any of you have any experience with this AED and possible side effects i have to look forward to, please share!

Cheers
Westy
 
why me

Thanks for the link info on Epilum, though i have to say it didn't make me feel positive about the side effects. The main one seems to be weight gain and i just can't have that!! i'm under 5 ft in height with a congenital leg defect which means i can't walk more than a block before i'm in extreme pain, that with uncontrollable seizures means i have very few options to exercise and being over 40 i find it hard to get rid of any weight.

It's not as if my Neuro beleives this AED will help, i've tried just about all of them and he says that i need to be on something even if it's just for his peace of mind.

What am i going to do i can't put on anymore weight, my leg won't cope with having to carry me and my self esteem is at an all time as it is :(

please help
 
Wow Westy, I sympathise with you. I'm new here so hello! I can't say i'm new to epilepsy though. I took epilim when I was a child but it wasn't until I started Sabril as well (now banned) that I really got my seizures under control. When I had to start Epilim again last year I hated it. I found my memory was terrible, I would be convinced I was in one place and just had to trust friends and family when they informed me I was elsewhere. I would stop halfway through a sentence and have no idea what I was saying etc. I did put on a little weight but I am active and able to move around more than you. I must add though that the drugs really do affect everyone differently so I would still recommend you try it. I am also unsure if it was the drugs or my condition that caused these issues. Have you heard about Tegratol? I've heard good things about it, although weight gain is a common side effect.
 
Welcome Wobblez
Yes i have tried Tegretol. No good for me but as you said, we are different in how we react to meds. what you described about memory probs and not recognising your surrounds (for want of a better explanation). Is something i deal with regularly, it's freaky and unnerving!. i have to do a lot of self talk to assure myself i'm safe and i'm not going crazy. like any other side effects or brain related illnesses, we have to recognise this as some thing that could happen, talk to friends and family and ask them to help you to be aware of where are and not to be concerned. we have to to learn to work around it.
 
Westy, do you feel the disoreintation and memory loss are a result of the epilepsy or the meds? It's nice to know i'm not the only one. Do you get this only with seizures or just in everyday life? I guess they could be occuring while i'm pre/post ictal and i'm not aware of it.
 
I'm not sure whether these symptoms stem from years of damage done to my brain from seizures or meds, but there was a period of one year when i wasn't on meds at all and i still suffered with these things (no change in frequency).

As to when i have them, i have them in everyday life, since my last seizure 2 weeks ago they have been almost daily!
i'm under disillusion that 20yrs of uncontrolled seizures has to damage my brain in someway, if this is the worst of it i guess i should be greatful!

Westy

:e:
 
Hi Westy,
I feel for you it must be difficult,i just thought id share with you my experiences with Epillim regarding weight gain.
I was told i would put on weight around the chest area,which i did it seems to have tailed off now,im 5"8" and way around 13 and a half stone.The doctors told me they can operate if there is a build up of to much fatty tissue in this areabut that hasnt been nessecary so far.
Personlay i dont think i need Epillim because when im on it on its own im having tonic clonics regulary,so im on Tegratol as well which is a lot better,hope this maybe helps you,all the best
Neil
 
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