Have you been prescribed zonisamide for seizures? My experience.

I have been taking zonisamide now since the first of December. I have tried Keppra ,Lamotrigine, Gabapentin, and a couple of others. All of them made me crazy.
My last seizure was in November. Typical , I didn’t know I had one. Woke up in morning and told husband I slept well. He said you don’t remember..??
Anyway back to zonisamide. I started out with 100 mg. No issues. No seizures. Slept great. 15 days later stared 200 mg. Still no seizures and slept fine. As of last night I was suppose to increase to 300 mg. Horrible night. Slept maybe 1 hour. Anxious. Called Dr. and haven’t heard back. May not be in office..Friday after New Year’s. I am debating on going back to 200 mg. tonight. Really don’t want to have a seizure but sleep is so important to me.
Who has taken zonisamide?

Hi @murphymarg59
I'm so sorry you're going through this . Not being able to sleep is absolutely exhausting. I've been there myself with another AED, and it's really tough.
What you're experiencing is actually part of the process of finding your right medication balance. As my current doctor likes to say, every patient is unique, and finding the right medication and dosage often involves some trial and error. It takes patience and resilience, but you're not alone in this.
Let me share something from my own journey that might give you hope. In December 2024, I had status epilepticus and was started on a high dose of Keppra to stop it, then brought down to a standard dose. But I kept having very unpleasant side effects. My doctor slowly reduced my Keppra - from 500 mg twice daily at the hospital down to 150 mg twice daily over six months, with regular Keppra blood level monitoring. It definitely required patience, but it was worth it.
Please don't reduce your Zonisamide on your own; it could have serious consequences. I know it's frustrating that you haven't heard back from your doctor yet. One thing I've learned: during this time of year, I always ask my doctor if he'll be available, and if not, who I should contact in case of need.
In the meantime, try to catch up on sleep during the day if you can. When I was struggling with sleep, two things really helped: regular exercise and yoga nidra (also called "yoga of sleep"). If you're interested, I'd be happy to share more about yoga nidra.
I hope that soon you will hear back from your doctor. 🙏 Please stay strong!
Chris

@murphymarg59

So sorry to hear about your reaction to the increase of the zonisamide. I just looked back at my meds list to see the exact dosage I was taking. It was 300mg and that is what kept me up too. At least you are smarter than I was. I took it for a while without a goodnight sleep. I think I figured eventually it would start to work, kick in. I don't know - not toooo smart.

Well, tomorrow is Monday and I hope you will hear from the Dr in the morning.
All the BEST!!

@mollie1022
Did you gradually start taking zonisamide or start out at 300 mg ? Did you take it at night? What do you take now?

@murphymarg59

Honesty, I don't believe they started me gradually, but I can't remember. However, I do remember taking it in the mornings (which I believe was my mistake) and then changing and taking it in the evenings. It did help with the seizures, but I could not sleep and like I said I stayed on it as long as I could. Eventually, I went to another Dr. that put me on Vimpat and at first, I struggled with that so much I actually wanted to go back to zonisamide, go figure. But this was the beginning, and I was really struggling with the seizures and I just wanted something that worked.

Now I am on Vimpat and Topiramate and that seems to be working, as far as I can tell.

@mollie1022

Thanks for the reply. This is such a struggle.
Since I hadn’t heard back from Dr I dropped back to 200 mg at night. Plan to do that until tomorrow night(Monday). Then will try 300 mg at night one more time to see if I can handle it. Will call Dr if I have issue.
Are your seizures being controlled on your current medicine? Pray they are. I have got to get my life back.

@murphymarg59
I was just curious if you started taking the 300 mgs?
I think it was a wise decision to cut down to the 200 mg but I would have gone back up to 300 much slower perhaps taking a a third of a pill for a few days and another third for a few more days and another third for a few more days. My own personal belief is that a lot of people and their doctors have them titrate up to quickly and they end up getting more serious side effects. Another way to decrease side effects by using extended release medications.
Please let us know how things are going.
Take care,
Jake

@jakedduck1
Talk to Dr and was told to go back to 200 for a week. Then try 300 again.
Pills are a capsule so I can’t half them.
I’ll let you know how it goes.
Thanks for your comments.