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Hi All


I have not posted in a long time so probably best to update you all.  My husband finally got home at Xmas after having his SAH clipped and coiled in April last year and suffering numerous complications.  Had follow up angiogram in December - they thought they may have to do some more coiling but it was ok - and his neurosurgeon signed him off in May for good as he only had the one aneurysm.


Things settling down and he is making very good progress.  Physically no problems but still can seem confused and disorientated at times and obviously short term memory issues but overall I cant believe how well he has come on and if this is as good as it gets i'm happy considering the bleak outlook this time last year.


Anyway the reason for posting...... (ps I am not asking for medical advice just wanted to hear other people's stories) we met a neurologist in December last year re his meds (he is on keppra 3000mg and lacosamide 400mg) who said he would not reduce his meds as it was too early as he had his last seizure in June and they like to wait a year.  He has not had any seizures since June last year.


 We have an appointment next week with an epilepsy nurse with a view to stopping the lacosamide.   I know the docs are quite happy to have him continue on his meds forever more but he hates taking them as he had never taken a pill in his life before this and I do worry about the side effects. I'm concerned as I dont want him to start having seizures when we are doing so well.  I just wondered what other people's stories are regarding coming off this type of medication.

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Hi there


Good to hear things have improved for you both, I was on anti seizure meds (sodiumvalporate) came off them year-year & half later, not at once mind you had to be weaned off them was so scared that I'd have a seizure only had them when I took ill, but thankfully I was ok..


Only thing I noticed was

1. I felt more here, alert not fuzzy

2. Sleep wasn't so easy. On them I could sleep 18hrs a day if I'd been allowed to..


Wishing you all the best but see how far you've come...


Take care

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Hi Tricia,


As Louise said wean off of them.  (Ask Doc always)


I have had epilepsy since  puberty, those days it was phenobarb.

I have them under control but when I get a temperature or shocks (like a death Parents etc) I have a fit.


I have been six to 8 years without a fit and then just when I feel safe, wham ! down I go.


I have had trouble trying to get off  keppra as my Doc wants me on them.  I have cut 1 keppra out as they make me sleepy.

Not had one since 2010  so fingers crossed.


Good luck to you both. 


Winb143  xx 

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I ended up having to be weaned off mine extremely slowly (over many months) as experienced pretty bad withdrawals symptoms and plus the anxiety of having a seizure whilst doing so ... I was slow but sure and all was eventually fine and my confidence was gradually rebuilt and the anxiety eased and then stopped.  Takes time both mentally and physically.


The very best of luck to you both. xx

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