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Santosha, Maybe you could ask your doctor to switch your medication to ZONISAMIDE CAPS. It is the GENERIC FOR ZONEGRAN. My dose is : 3caps of 100 mg. at bedtime. Your doctor might have to play around with a dosage for whatever type seizures you have. In hospital I was on KEPPRA. It put me in a very dark place HALLUCINATIONS & many other things. I will never take KEPPRA again. I have ENCEPHALITIS of the frontal lobe causing my seizures for probably 20 years. I will be 95 in June. My brain is very good for which I am grateful. I know when I am having a seizure & I am aware of my surroundings. I stare into space & my right hand will wave. I wish you the best in trying a new medication. Keppra is not the proper medication for some people. You might be one of those people. Speak with your doctor ASAP. Get a second opinion if your doctor wont try a different medication. Check on zonisamide I have not had any side affects that I am aware of.
Replies to "Santosha, Maybe you could ask your doctor to switch your medication to ZONISAMIDE CAPS. It is..."
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Hi @boomarang
Thank you so much for your message.
In 2019 and 2020 I tried 5 different AEDs: Lamictal, Tegretol, Trileptal, Gabaneurin and Vimpat. Some of them could control well my seizures (Lamictal and Tegretol), but I could not tolerate the terrible side-effects I had. Others caused terrible seizures, like Trileptal. In 2021, I was referred to an epileptologist and started a different approach based on pure CBD, trigger management, and diet. I still had seizures, but I was a lot better than when I was taking AEDs. I could smile again and have a life. I am very sensitive to those medications, most probably because my type of epilepsy is highly refractory.
Unfortunately, my seizure threshold was reduced last December due to some circumstances I am currently facing related to the health of my parents. So, after a status epilepticus, the first one I had in life, I had to be put back on AED, Keppra, which I had not tried yet. I am sorry to hear you had such a bad experience with this AED. Thankfully, I am not having the Keppra rage experience many do report, though I struggle with other side-effects of this AED. Keppra so far has been the AED that has been harming me the least, perhaps because my dosage is a very low one. I have also been seizure-free with this AED, thankfully. My doctor respects my sensitivity to those medications and has been adjusting the dosage little by little, which is already below the recommended pediatric dosage.
But I thank you very much for your suggestions. I hope to increase my seizure threshold again and to be back on my previous treatment in the future, which harmed me the least.
Have a nice Saturday!
Chris (@santosha)