Have you been prescribed zonisamide for seizures? My experience.

Hi @murphymarg59 -
Zonisamide was the 2nd medication that I was prescribed. The first one was Keppra and that made me crazy. Then the next neurologist tried zonisamide and that seemed to work however, the side effect was that I couldn't sleep. We tried taken them at night and that did not work either. We knew no sleep equals, seizures.

@mollie1022
So far zonisamide is working for me. I have tried Keppra& Lamcital and they both made me crazy and suicidal. My seizures are very infrequent. Only had a total of 6 PCP put me on 100 mg of gabapentin and I took one a day for 4 1/2 months no seizures. Then had a seizure after stress of putting dog down, no sleep and a glass or two of wine at night!!! Went to 3 -100 mg of gabapentin a day. Had another seizure within a month. Went to neurologist and she put me on zonisamide 100mg at night and am decreasing gabapentin to zero over the next 3 weeks. I have been on zonisamide now for 11 days. Have not had a seizure or any issue with sleeping so far I am to see neurologist today. 🙏🙏🙏🙏
According to Dr. zonisamide works somewhat like gabapentin only stronger.

What is your doseage of zonisamide?

@mollie1022
What dosage of zonisamide do you take?

@murphymarg59
I'm sorry, I should have continued. I got off of it when it was keeping me up all night and switched to Vimpat. When I started Vimpat the doctor said it would only last 5 years by itself. Well sure enough, the seizures came back about 2 years ago they increased the Vimpat to 200mg 2x a day but that wasn't enough alone. So, now I take both Vimpat & Topiramate (200mg) which, was hard at first, but it seems to be working. It has been a little over a month. Thank goodness.

Bet you felt great to go 5 years w/o a seizure. Sure hope this new medicine works for you
Saw neurologist yesterday and I am to increase zonisamide to 200 mg a night for 2 weeks and if I do ok then go to 300mg at
night.
Curious as to what type of seizures do you have.
Thanks for your feedback

@murphymarg59
I have complex partial/focal onset impaired awareness seizures and when I am by myself, I don't always know they happen unless something is really out of sorts.
The last one that happened a few weeks back the only reason I knew was because my phone was on the floor, and my flip flops were on the other side of my desk. Otherwise, if my husband isn't around to video tape me or tell me then I don't even know it happens sometimes.
What kind of seizures do you have?

I have a focal seizure that becomes generalized. I never know when I have them. Couple of weeks ago in the morning I woke up and told my husband that I really slept well last night. He said’you don’t remember?’ I had a seizure about 2 in the morning. He woke up and I was sitting on the floor by bed. He will not leave me alone. 24/7. Can’t drive, go on walks by my self. I am going crazy. A year ago I was volunteering at hospital, animal shelter, church. Very active. Now nothing. I am hopeful the zonisamide will do the trick. In two days I start taking 200 mg of zonisamide at night. Then in another 2 weeks I increase to 300 mg at night This is if I do not have any bad side affects. I really have trouble with so many medicines. I am praying this will work and I can get my leg back!!!!!

@murphymarg59
I really hope that this medication works for you and that you don't have any side effects. Not knowing when you have the seizures is the absolute worse. Ugh. I still don't and never will understand why this would happen to me so late in my life. But, the specialist that I was recently seeing did mention to me that focal seizures can turn into generalized and that scares the S*** out of me. So, I am really hoping that I can keep them from occurring with the topiramate.
Please keep me updated on your status. I really want this to go well for you. I wish you ALL of the BEST.

@mollie1022
Thank you for you input. Do far so good. 😊