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Zonegran (Zonisamide)

Wed, 03/04/2020 - 19:16
My 16 year old daughter started taking Zonegran 9 days ago and has developed many of the side effects including somnolence, fatigue and ataxia, difficulty concentrating, difficulty with memory, mental slowing. It is like she is drunk and can't walk properly, her speech is slurred, she has no energy, can't remember conversations and things that happen. It is quite scary! She is also in an important year at school and is not making it through the days there, and even when she is there she is getting nothing out of it ... We have been told to wait and the body gets used to the medication and the side effects pass. My question is hwo long does this take? If anyone has any experience with this I would be most grateful if you shared. Many Thanks Georgina

Comments

I haven’t been on that

Submitted by Patriotrehab on Wed, 2020-03-04 - 22:35
I haven’t been on that specific medication, but I’ve been on lots of AEDs. It’s been my experience with AEDs that side effects can take anywhere from a couple of weeks to a couple of months to wear off as a general rule. If the medication is being given at a higher dosage early on or if there are increases then you can expect that the side effects may come up more. Some side effects are inherent to the AED for some people, meaning that they are more permanent like in the case of Topamax, for example, some people experience problems with cognition as a side effect for the duration whereas I’ve never experienced that side effect from that medication. I just started another medication called Lamictal and I’ve had a ton of side effects that have been brutal for me. The information shows that it can take up to 8 weeks for them to go away. I’m now on week 7 and most of them have just started to subside. 

Hi, Thank you for posting and

Submitted by Anonymous on Thu, 2020-03-05 - 10:25
Hi, Thank you for posting and we understand your concerns.As Gianna shared with her experience taking different AED’s treatment and how they body may reaction to certain medications varies for each individual. The goal of treatment with medicines should be –No Seizures and No Side Effects. However, we know that some individuals may experience too many side effects, that are very bothersome or cause other health problems. To learn more about Zonegran, and things to look for,please visit: https://www.epilepsy.com/medications/zonisamideIt’s important that you all are continuing to express your concerns with her healthcare team and if she experiences any additional changes in side effects, symptoms, moods, behaviors, or seizure types/frequency. To learn more about the challenges with seizure medicines on cognition,visit:  https://www.epilepsy.com/learn/challenges-epilepsy .It may be helpful to keep a journal or diary to help track her seizures, manage her medications & side effects. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary ,is a great tool for identifying & tracking seizures and triggers, setting reminders, recording medical history, moods, behaviors, and other personal experiences, that may affect seizures and wellness, which can be shared with her healthcare team. It’s common for those who are in caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and that you're and making your health and overall well-being a priority. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf It may also be helpful to connect with other parents who may have similar experiences, to ask questions, find & give support to each other,by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents  Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline    Or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates , to find support groups, events and programs in your community.

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