Horried side effects of Epilim

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My mum (78 yrs old)has had her epilepsy medication changed from Phenobarbitol and Epanutin - (GP cock up- too long to go into here).  To Epilim which she started last Autumn.  Since then my mum has developed the following symptoms:

?Deafness; hair loss with new growth being curly; increase appetite and weight gain; loss of balance and increasingly unsteady gait, now requiring a walking stick and aid of one person; confusion, memory loss, lethargy, drowiness and increased sleeping; tremor, nose bleeds, headaches - although these have reduced once the dose was lowered; Increased urination.

?Her GP is convinced there is something organic going on ie alzhiemers, senile dementia.  Two CT scans have shown no abnormalities, 2 medical teams and a Geriatition are unsure what is wrong with her..  She is to have a MRI in a couple of weeks.  I feel it is the Epilim as all her symptoms started within a couple of months of starting this drug.  Although given her age there is likely to be some degenerative changes seen on the MRI.

?I have had to fight to get mum seen by a neruologist and for me to be listened to.

?my mum has gone from a normal independent woman to one dependent upon her husband for all her daily needs.

?Phenobarbital and Epanutin caused her no side effects.

?Has anyone else had this amount of problems with Epilim/Sodium Valproate.  Advice greatly appreciated

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10 Replies

  • Posted

    Hey o I had some bad side effects of the epilim this year and have now changed to a different medication because of it I was taking 1200mg a day and what happened with me was I started getting numbness and tingling in my arms and legs then I got so weak I could barely move let alone walk and I was tired all the time i was in hospital for about a week and had an MRI that came back fine obviously because it was the medication you can't see anything by MRI so I saw my neurologist and as soon as I swapped over to another one I got better but I never thought to look at the side effects of the epilim as I had been taking it for 10 years but obviously my body just didn't like it anymore but definitely look at those side effects! Also I am 20. Yrs old

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    • Posted

      Thanks Amy. My mums GP is convinced it's due to alzhiemers or something, totally ignoring all her symptoms correspond to side effects of epilim and the fact they all started a couple of months after starting epilim.

      It's comforting to hear that someone else has had problems.

      Thanks

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  • Posted

    I know this was posted a long time ago but I wondered if you ever sorted this out? My Dad has just come off phenobarbital after 60 years on it with no seizures and has a seizure - they have increased his valproate/epilim and he has all the side effects your mum had.  I suspect we will have a hard time convincing them, but he wants the valproate back.
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  • Posted

    Hi have only just read this I have most of the same side effects too!!!

    Just wondering if they changed medication in the end!!

    I’m waiting to have an EEG next week, I have had Epilepsy since I was 15 I’m now 62, this last 6 months I have had to give up work because I was always so weak, my husband has also stopped working to be here for me

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    • Posted

      Whoops...meant to say he wants the phenobarbitone back....not the valproate. My dad has had his valproate reduced again to 800 which is i think quite low. And has been given a little dose of phenobarbitone back. But is coming back to life! He also developed terrible gastritis on the 600 twice daily valproate and is only just recovering. 
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    • Posted

      Glad he’s picking up slowly, that’s all I want to do never felt so rough, seems every part of my body has problem, 

      Headaches tremors weak legs tired all the time thin skin etc etc

      Will let you know how I get on next week x

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    • Posted

      Been to Docs today and am having bloods done tomorrow for thyroid B12 iron etc, also ECG had some heart flutters Doc checked me but to ease my mind and my anxiety which I also suffer from !!!! Hopefully these will all be ok, or give me some answers x
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