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Anti-seizure drugs (AEDs) and epilepsy

It is said that Anti-seizure or antiepileptic drugs (AEDs) can effectively prevent seizures in about 7 out of 10 people with epilepsy. However, they can also create long-term, serious side effects. If you currently take AEDs what side effects have you experienced?

  1. memory

    1. Headaches and stuffy nose

      1. Hi Kailah,
        I have tried so many over the years. Now, I'm on zonisamide and phenobarbital. I'm currently getting weaned off of phenobarbital because I can't have children with phenobarbital and it causes my bones to decay. So, my doctors and I have come up with a plan to gradually take me off of it.
        Zonisamide causes sadness. Sometimes, I feel sad and experience memory loss, and confusion. My dosage of zonisamide was recently increased and that's when all of this started. I had to reach out to my doctor because this isn't normal for me. She's decreasing the zonisamide because these are new side effects.
        I've learned to pay attention to my body and what works for me.

        Derra Howard
        Epilepsy Team Member

        1. Hi Kailah! I have tried so many AED's and had a variety of unpleasant side effects. My primary AED is Lamictal. Once, after I lost a lot of weight, my blood level of Lamictal got too high and I started experiencing extreme symptoms. My balance was so bad that I couldn't stand up without falling down. I had to have help to cross the room, otherwise I had to crawl. Now I am on a lower dose and I am not having any side effects from Lamictal. Unfortunately, Lamictal alone isn't enough to prevent all my seizures, and I have tried a variety of other AED's on top of it, which have all caused side effects.

          I've tried quite a few AED's that give me a prickly, painful sensation on my skin, like an invisible rash. Those included Vimpat and depakote. Keppra at high doses caused depression, verging on suicidality. Recently, I was on Zonegran, and it caused incredible brain fog. I couldn't do basic calculations, which really interfered with my work as a chemical engineer. Now I am on Xcopri, which is seriously interfering with my sleep. I have crazy vivid dreams and I wake up feeling unrested. I feel sleep deprived, like I've been awake for days without sleep. My doctor recently lowered my dose, which has helped with that, but I had a break through seizure. Now, I'm going to try Breviact, which is a cousin of Keppra with less incidence of side effects. I'm trying to stay positive that this one will work without causing negative mood effects. If that doesn't work, my doctor has suggested a VNS. I hope it doesn't come to that!

          1. thank you so much for sharing your response with the community! These experiences must have been trying, but still you keep a positive attitude - this is such an inspiration to the community and others who may share a similar experience. I found an article onsite where a Patient Leader shares their experience with Briviact that I hope is helpful! All our best, Kailah (Epilepsy Team Member) 💜

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