Anyone Taking Zonisamide For Complex Partial Szs? How Is It Working For You, What Dosage Are You On And Any Side Effects? Thanks | MyEpilepsyTeam

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Anyone Taking Zonisamide For Complex Partial Szs? How Is It Working For You, What Dosage Are You On And Any Side Effects? Thanks
A MyEpilepsyTeam Member asked a question 💭
posted May 10, 2017
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A MyEpilepsyTeam Member

I took this medication for around 4 1/2, or 5 years. I'm not saying this will happen to you, but I ended up on 550mg (almost the highest legal dose). It was actually the first med to 100% control my seizures- the problem was that I grew a really high tolerance to it. It eventually stopped working as well. It also made my anxiety much worse (panic attacks for no reason) and caused major depression. Don't get me wrong, it was a great drug for me for a while. Just the higher doses are horrid.
In the end you are different than me. Don't hesitate to try it. But that's just my experience on it

posted May 11, 2017
A MyEpilepsyTeam Member

My son had a terrible reaction to zonisamide after taking it for 6 months. He got really depressed had cognitive slowing and processing and ended up in the ER and inpatient psychiatric hospital for depression with psychosis. They didn’t figure out until a year later when the same thing happened and we finally got a doctor who listened to us. He was on 300mg/day. I researched this medication and the cases of this happening were horrifying. I can’t believe they still are able to prescribe this when 4-8% of people have something similar to this happen.

posted August 8, 2023
A MyEpilepsyTeam Member

I suffered from complex partial seizures for most of my life, until I had brain surgery. My neurologist put me on zonogram for seizure maintenance for a while, but, then changed it to neurontin, and later to lyrica, all for seizure prevention as part of my surgery. All the medications that this neuroligist worked well for me, with no side effects. i don't exactly know why he kept changing my medication. I know that neurontin is very similar to lyrica, which was approved for epilepsy in 2007. He worked on the trials for this medication, so I can see that he was preparing me for this medication. I've been taking it since 2008, and even though I'm not even taking the therapeutic level, I hate it because of all the side effects.

posted May 22, 2017
A MyEpilepsyTeam Member

Are you still on 200 mg Zonogram daily?

posted May 16, 2017
A MyEpilepsyTeam Member

My Dr. Put me on a 200 mg. Dose of Zonogran at night about 1 year a go. It seemed for awhile my nights I sometimes had a seizure. Zonogran is an older med. So far no problems. I really have to try to scale down on my meds, as I take 13 pills a day. I am felling good now 1 or 2 complex partial seizures per month. Jan 2017 I had to have the RNS removed due to a medical emergency, I'm back to normal now since March 1st.
Blessings,
Rob

posted May 16, 2017

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