Side effects!!

PLEASE is there ONE type of epilepsy medication without a BAD side effect? Over forty years with epilepsy, I swear I have tried the lot, EVERY time had to stop type of medication because of side effects! Zombie type effects [nicknamed 40 minute pill; 40 minute before able to give an answer], affected thyroids [voice!], extreme tiredness, Parkinson's disease type effects, extreme tiredness and no effect on epilepsy, losing one's temper[latest one!], different onset for a seizure [not ready for fit greater injury when falling!], just no effect at all on epilepsy [off as soon as possible with that one!], even tried cannabis made epilepsy worse, etc, etc!! To be fair have other serious medical conditions, bad NF2 and scoliosis which might be another part in the equation? Would surgery be an idea, could be a neuroma from NF2?

4 Replies

oldestnewest
  • Hi

    It really sounds like you’ve been through it, with the different epilepsy medicines and with your various health conditions.

    Different people are affected by epilepsy medicines in different ways. So no-one could give you the name of a medicine without side-effects.

    But I do wonder if you have had a full epilepsy review? Getting a second opinion from a specialist centre could maybe answer some of your questions.

    We’re not medically trained so wouldn’t be able to answer the question about how your various health conditions might affect each other. But I do hope you are able to get some answers from one of your specialists.

    Regards

    Cherry

    Epilepsy Action Helpline Team

  • Essentially put remarks to show the side effects I've had over the years in reality there is no miracle cure, everybody usually affected by epilepsy in different ways! I've just got a new epilepsy specialist, still a bit grumpy that my old one retired after 30 years, a good personal friend. One of the important side effects I forgot about was that a medication might work very well, but after a couple of months my body got used to them and I started have regular seizures again, thus change of medication. These remarks I put this down to show people with epilepsy what sort of side effects a person can endure during their condition, and REMEMBER people can be cured from epilepsy!

  • agreed,different people,different effects.we're not all the same.

  • Look into cannabinoids.

    You would need to take them as an add on though,but maybe you wouldn't need so many meds

You may also like...