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I am a 33 year old female with Juvanile Myclonic Epliepsy which I have had since the age of 12. I have been taking Epilim ever since, however I was only informed about the complications during pregnancy 5 years ago which meant I had to try different medication as I was of 'child bearing age'. Itried Keppra but got the depression side effect so had to go back to Epilim. I fell pregnant in August 2012 and was advised by my specialist to reduce my Epilim whilst introducing Lamotrogine. I only managed to get down to 600mg daily from 1000mg daily of Epilim and suffered a relapse. My pregnancy was induced a couple of weeks before my due date as my Epilepsy was getting worse so the safest thing was to bring the baby early. I had quite a traumatic birth as my daughter was not breathing for the first 20 mins after birth, she was in intensive care for 5 days. However she is absolutely fine now and we count ourselves very lucky considering all the complications, physical and mental, which could have been wrong due to the Epilim still being in my system throughout my pregnancy. After my daughters birth I had to increase my Epilim again but was unable to come off the Lamotrogine as I was relapsing, this means that I am on too high a dose as the Epilim doubles to lamotrogine dosage. Now we are looking to plan a pregnancy for next year so have to discuseds this with the Epilepsy nurse. She has advised me that I need to come off Epilim all together before starting to try for another baby. I am very concerned about this as I have my daughter to look after all day and am scared of having a seizure whist alone with her. Its easy for nurses/doctors to plan this for you but in reality it is a scarey situation to be in. I have been prescribed Zonisamide and told to start it gradually this means I will be on 3 medications at once which worries me as the side efects of this medication are drowsinss, dizziness, double vision and kidney stones - again these are quite worrying as I have my daughter to think of and would not like to be carrying her and go dizzy or similar.The only other outcome is to change our plans and have no other children, my partner is very supportive but ultimatley the decision is mine and I really dont fell happy having to make the choice.Part of me feels i should give it ago before dismissing it all together but the other half is scared for my daughters safety and my own.  I just wondered if anybody else has been in a similar situation? Sorry for the essay!!

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  • Posted

    Hi Ash,

    I have Epilepsy and in my era (sound ancient) they gave me phenobarbitone and I get on well with them, they tried me on other drugs but I kept having seizures.

    My Doc said "well Win they seem to suit you"  Now 68 wih 1 child and apart from her being my best pal all seems well on the epilepsy side.  Do you have a warning sign ie jerking.  My right arm jerks so I used to lay her down surrounded by cushions and she was okay, more luck than judgement plus I had good parents.

    Mum used to come up when I felt shakey.   Good luck and try not to worry

    Win xx

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    • Posted

      Hi Win,

      Thanks for your advice. I also have jerks in my right arm as a warning but my concern is that as my daughter is only 2 she would be helpless and wouldn't be able to contact anybody meaning she could be left unsupervised. My parents are great and so are my partner and sister however they all work full time so it's hard for anybody to be with me all day therefore there are times I am alone with my daughter. I'm at a point of needing to make a decision as to whether to risk all of the above or decide against it and have no other children.

      Also you mentioned phenabarbatone - my mum was in this when she was younger as she suffered from convulsions when she had a temperature, however she grew out of it. When I was diagnosed my mum mentioned this to the dr and they said they wouldn't use this drug as much as it's very old. At the time of my diagnosis epilim was the most effective for my type of epiliepsy.

      Thanks for your advice I really appreciate it.

      Ash x

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  • Posted

    I had Epanutin and it was too harsh for me. They wasn't right for me.

    You'll be okay how often do you get them ?

    I taught my daughter to phone her Nan, nothing to do with seizures I just wanted a break lol

    They give phenobarb to dogs so guess I am an old one  ha ha

    Good luck and smile xx

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  • Posted

    I also wanted to say the fear that rushes through your body when you get the shakes is not fun !! Do you get that also ?

    It is not the end of the world I bet you can cope as now I wish I had 2 children.

    Way too late though xx ha 

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    • Posted

      Yes I also get that scary feeling just before jerks. I also have absences which are not full seizures but do make me lose concentration and unawareness of everything going on around me. I am due to start the medication this week so it's much too early for me to teach my daughter to call nannie - even though she knows how to access my phone! Ha! It's a catch 22 situation I think. Life is never straight forward with epiliepsy haha! x
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  • Posted

    Whatever you decide will be for you as a family and I wish you all th best.

    Good luck xxxx  Good Essay 10/10 A+ 

    Keep smiling and never get down if poss xx xx

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  • Posted

    missed the e off the so th  lol xx
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