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Anti-Epileptic Drug impact on users with Autism

Jasperlad
over 6 years ago

There is a lot of talk in the media currently about how Anti-Psychotic medication can adversely affect those with Learning Disabilities, Autism or other Mental Illness. My son takes AED's and has severe learning disabilities as well as Autism and these drugs have the effect of increasing his level of anxiety and depression considerably, though sadly not really controlling his Epilepsy. I have asked the question of Neurologists about the impact these drugs may be having in the same way as the APD's and a little surprisingly, I'm being told, it's uncertain, and consideration is being given to prescribing anti-depressants on top!

I wonder if anyone in the forum has any experience of or knowledge of the impact of these drugs on someone with Autism?

Many thanks 

Parents
  • over 6 years ago

    Hello. I am autistic and epileptic I started on tegretol as a child, this did nothing for my epilepsy, then they put me on epilim, my mother has always said that that was when my depression started but no one ever believed her. The epilim didn't do a great job of control but did make my brain feel like cotton wool so I stopped taking it just before my O levels. The depression has been my constant companion ever since, the cotton wool went pretty quickly and the fits calmed down a lot over time, I only get 3 or 4 a year now.

    I am not going into any detail about my depression  here at the moment as it's the medication you want to know about, and I don't know if I would still have been depressed without the epilim. 

    Song

Reply
  • over 6 years ago

    Hello. I am autistic and epileptic I started on tegretol as a child, this did nothing for my epilepsy, then they put me on epilim, my mother has always said that that was when my depression started but no one ever believed her. The epilim didn't do a great job of control but did make my brain feel like cotton wool so I stopped taking it just before my O levels. The depression has been my constant companion ever since, the cotton wool went pretty quickly and the fits calmed down a lot over time, I only get 3 or 4 a year now.

    I am not going into any detail about my depression  here at the moment as it's the medication you want to know about, and I don't know if I would still have been depressed without the epilim. 

    Song

Children
  • over 6 years ago in reply to Song

    Hello Song,

    Thank you for sharing this information. Our son was prescribed tegretol (among many others) but we had to withdraw him from it due to bad side effects. Epilim has always been the one AED that we have stuck with in varying doses, alone or with other AED's.

    He was diagnosed with Autism at age 29 and your description of 'cotton wool' works very well and I can relate to this with our son, though he sadly lacks the ability to really explain his feelings. As our son has seizures, even with the AED's on most days, he is on a high dose now, but his depression and anxiety is also getting worse and his quality of life is suffering enormously. I am wondering like your mother, if there is a link.

    Good luck to you and I appreciate your sharing your story. My son has some appointments coming up for both Epilepsy and Autism and we may learn something more. If so I'll share it.

    Best regards