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Long term side effects

I am an oldie and have been on AEDs practically all my life which are now causing side effects , one being only able to sleep every alternative night but this only started 2 years ago and during the autumn and winter night.
I would be interested to hear from others who are suffering from long term side effects of AEDs

  1. Hi Cath, do you mind telling us the name of the long-term AED you've been on please is it epilum?

    1. you asked for the name of the AED which is phenytoin.
      Over the years I have been on Tegretol which affected my blood cells so they took me off the Tegretol. The medical profession of today mentioned this would not happen.. I also tried Epilim which was disaster but we are all different.

  2. Thanks,
    I can remember so well what you described as your side effects. Hopefully, as you get older these side effects will decline.
    As I am an oldie getting these symptoms caused my parents and siblings the embarrassment of having me with them at various family reunions etc. so I was mainly not allowed to attend.
    Now the problem is severe side effects due to having been on the same AED for so long
    My kidneys and liver are not 100% in functioning order. I have had osteoporosis for a few years but still no pain yet.
    However, I will point out that I am on the old-fashioned AEDs which I have been taking for 67 yrs. Unfortunately, when the new AEDs appeared at the turn of the century I was adviced not to change after having been on one AED for too long.
    Thanks for producing this forum as I live in the UK where you may know already, we no longer have a forum which I do miss.
    Cath 5

    1. Hi there! This is such a great question. Thank you for posting this forum. While we wait on the community to chime in, I found this great article that our patient leader has written where she talks about her experience navigating AED side effects:
      I hope this helps! Wishing you all the best, Kailah (Epilepsy Team Member)

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