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Zonegran
Thu, 05/09/2019 - 19:26Topic: Medication Issues
Guys we are so scared for our 10 year old. He is on trileptal (since age 5) zonegran since age 7. Lately since his last med increase zonegran to 125 mg he has just fallen apart. He is so slow now , he is exhausted all the time. He is so negative abt everything , he has had many many medical tests. He has high function autism so he cant really explain well what he is going through. He says his legs hurt all the time, he has forgotten how to add, round numbers. He repeats negative things all the time in circles. Soon we are just transitioning off of zonegran slowly and increasing trileptal per neuro. Has anyone else felt like after 1-2-3 years that they are lost their mind after extended zonegran use ????
Comments
We have - neuro is always
Submitted by Briankut on Fri, 2019-05-10 - 13:06
We have - neuro is always skeptical when we report these side effects. We are with his permission transitioning off of it. I just feel like we are going crazy here and looking for peoples personal experiences
Briankut,I started Zonegran
Submitted by birdman on Fri, 2019-05-10 - 20:05
Briankut,I started Zonegran March 1. 200 mg per day. I had some mild rashes for the first few weeks. But over the last month or so I've been mildly to moderately depressed. I've experienced increased anxiety and aggression from many other anti seizure meds and this is one of the worst. I need to keep myself away from others or else something serious may happen. I sent message to my epilepsy specialist about it and he just ruled my problems out as anxiety about my upcoming surgery. I've had many surgeries but never have I become anxious, depressed, and violent because of them. I finally told doctor I want to decrease and get off so I am weaning off starting today. Thanks for sharing. Mike
Hi Briankut, Thank you for
Submitted by Anonymous on Fri, 2019-05-10 - 09:33
Hi Briankut, Thank you for posting and for sharing your and your son's experience. We encourage you to reach out to your son’s health care provider to further discuss any potential changes inside effects, behaviors, symptoms, or seizure types. For more information regarding seizure medication and side effects, these resources https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines, https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-medication-list may be helpful.Additionally you all may want to consider with your son’s doctor having a device that can help track his seizures, by visiting https://www.dannydid.org/ and by keeping a seizure diary https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary , as another self-management tool. These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication & other therapies, recognizing triggers and health events that may affect seizures and wellness, which you can share with his doctor.It also important for you as a caretaker to make sure you’re taking care of yourself as well, https://www.epilepsy.com/learn/seizures-youth/parents. The Wellness Institute https://www.epilepsy.com/living-epilepsy/our-programs/wellness-institute , provides tools & strategies to better assist your loved one and support you in your important role. For additional services, support, and referrals please contact our 24/7 national helpline by emailing us at contactus@efa.org & by calling, 1-800-332-1000, https://www.epilepsy.com/living-epilepsy/247-helpline