Epilepsy Research UK
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Hi my son had his 1st seizure just over a year ago since then he's had 1 at least every six weeks sometimes more I was reluctant to start the meds to begin with and the doctors said it was fine not to but he's had 3 this month that I'm aware of as they happen in the night time I'm unsure if I've missed any he's starting carbamazepine tomorrow has anyone had any experience with this medication and what should I look out for feeling very anxious 😕 just want to do what's best

8 Replies

Hi, Sorry to hear of the seizures your son is having. I am taking Carbamazepine and Phenytoin, which I have been on now for several years (20 and more). The medication has stabled my seizures, but everyone is different and each person has a different type of epilepsy. I have tonic clonic seizures which last for at least 35 minutes. Memory loss, tiredness and change of sleeping pattern could be relevant with the medication, but again depending on the dosage he is put on. Every medication has side affects and it may be a few they have to try, before they find a suitable one for him. It took me a long time of trying different medications before I was put on to Carbamazepine. Should you have any queries, please feel free to make contact... I have had epilepsy now for 42 years and have just gone 11 months seizure free.


Thank you


Please keep us updated on the progress of your son.

1 like

Hi, when I read your post it felt like dajavu as had very similar experience with my 7 year old son. Ryan was diagnosed with Benign Rolandic epilepsy but we also opted not to medicate. The past weekend a fit lasted 13 min and doctor put him on carbamazepine straight away. It will be increased over 3 weeks. Week 1 - 3ml morning and evening, week 2 - 3ml morning and 6ml evening and week 3 6ml morning and evening. It's day 4 of him taking it and his only complaint has been nausea. Ryan also has hemiplegia so generally get more tired quicker than peers but he is even more tired than usual and takes a nap when back from school in afternoon. I was equally anxious giving him meds but rather that than see him have a seizure. Good luck and let me know how he gets on.

All the best to you both



Hi thank you for sharing your story with me it's been a hard decision to make! we've just started the meds today so nothing unusual yet I've been advised to increase his by 1ml each week until week get to 10ml twice a day I love to hear how you get on with the meds over the next few months I've been told by someone else I know that her daughter was very tired for a few months but her body did get used to it. I too eventually felt like the risk of the seizure out weighed the risks of the meds hopefully I've made the right decision


It is important that he has the correct dosage & the drug that controls the seizures. Once he has been stabilised..DO not try various other drugs or even different versions as the slightest variation can trigger further episodes. Wish him well and enquire whether a VNS would answer his problem.


Breathing activity & exercise joined together, is a positive way of coming in control of the epilepsy, taking from a mind problem, and creating a more physical situation, with waves of energy a bit easier to cope with. For me fitness has seriously helped. I was on carbamazepine, as a suppressant to Tegretol, which was creating a heavy amount of anxiety & depression. But the carbamazepine was creating a lot fatigue, and the fatigue was then bringing on the fits. Caffeine & nicotine seriously effected me as a stimulant. Breathing in the nose & out the mouth with the exercise is a positive thing. And my muscles are serious part of my bodies control.


I was diagnosed with epilepsy aged 14. I initially only had seizures once every couple of months. Along with my parents we decided that I would not go on medication. We knew that a lot of epilepsy medications had serious side effects. Also that some people who have epilepsy at a young age grow out of it - this is especially true for the form of epilepsy I have (juvenile myoclonus epilepsy) which is effected a lot by hormones and can come and go with puberty.

I was ok for about 4 years, but then the frequency began to increase and we decided to try medication. I had to try three different ones, but eventually found one which works very well for me. I have been taking it for about 8 years and only had about 3 seizures in that time. Not been on carbamezapine but hope this helps anyway.



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