1. < Epilepsy & Seizures
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Have you been prescribed zonisamide for seizures? My experience.

Posted by lsittll @lsittll, Apr 12, 2020

I have uncontrolled seizures for 53 years. I have taken almost every medication possible. I almost died from a rare side effect of a newer drug. My doctor is very understanding about this. She has added zonisamide to the Lamcital and Depakote I take. It has done miracles! What once was 6 or 8 seizures monthly is now 1 a month. Zonisamide (a sulfa drug) for seizures?

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ldlauwers | @ldlauwers | Feb 23 7:11pm
In reply to @murphymarg59 "@ldlauwers I have been on zonisamide now for a little over 2 months. Started at 100mg..." + (show)
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@ldlauwers
I have been on zonisamide now for a little over 2 months. Started at 100mg for 2 weeks. Then 200 mg for 3 weeks. Been on 300 mg now for about 4 weeks.
I haven’t had the headaches but I will say my appetite sucks. Food does not taste good at all. But on the positive side I have not had any seizures. I do notice I need to keep hydrated or my blood pressure really drops and I feel really tired. You should mention to your Dr about your head aches.
Hang in there.

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@murphymarg59 My doc did say to stay hydrated so I've been making sure of that. I'm giving it a few days to see if the headache subsides before contacting her about it. Thx for your input < 3

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Chris Gautier, Volunteer Mentor | @santosha | Feb 24 4:38am
In reply to @ldlauwers "I started taking Zonisamide 2 weeks ago. I started slow - 50mg for 1 wk/1x day..." + (show)
Profile picture for ldlauwers @ldlauwers

I started taking Zonisamide 2 weeks ago. I started slow - 50mg for 1 wk/1x day then 100 for 1 wk/1x day and just started on 150mg/1x day. I had no side effects until now but its pretty mild. I have a headache on the back of my head just above the spine. This is only the first day and I've read headaches are pretty common and usually go away. I wanted to know if anyone here has had this side effect and how long it lasted. The only other thing I've noticed is my food is tasting bland. No big deal there - I could stand to lose a few pounds, lol.

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Good Morning @ldlauwers
While I haven't personally experienced Zonisamide, headaches can indeed be a common side effect of AEDs. As @murphymarg59 wisely suggested, it's definitely worth mentioning to your doctor.
I do deal with low blood pressure myself, and one thing that has helped me stay well hydrated is a homemade rehydration solution my doctor recommended. I'm happy to share the recipe:
1 liter of water
1 level teaspoon of salt (3.5g)
2 level tablespoons of sugar (20g)
I hope the headaches ease up soon. As I mentioned in another discussion, it does take some time to adjust to a new AED. You might find this discussion helpful:
How Long Does It Take to Adjust to New AEDs?
https://connect.mayoclinic.org/discussion/how-long-does-new-aeds-take-to-adjust/
Chris

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sam2446 | @sam2446 | 20 hours ago

Hello, my name is Sam. I have generalized epilepsy and have to take zonisamide. I've recently before have taken Keppra and Lamotrigine. I've only ever had 3 tonic-clonic seizures and a whole ton of monoclonic jerks ive been diagnosed since 2022. I recently had a tonic-clonic seizure in Feb of this year, and they switched me to this med. The main side effects I get from this drug were, at first was loss of appetite, and I already take Adderall, which already does the same thing, so it was really taking a toll on my body. Sleepiness, but other days I can be wide awake, and I also have been diagnosed with insomnia since middle school. The only other thing is the Dizziness or loss of coordination, but ive been like that since Feb, which could be from the seizure or the meds, but I'm also not a huge fan of water, and that's a big thing with this med.
That's all I have. Let me know if you have any questions, I would be happy to answer!!!

sincerely
Sam

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1 reply
Profile picture for Chris Gautier, Volunteer Mentor
Mentor
Chris Gautier, Volunteer Mentor | @santosha | 8 hours ago
In reply to @sam2446 "Hello, my name is Sam. I have generalized epilepsy and have to take zonisamide. I've recently..." + (show)
Profile picture for sam2446 @sam2446

Hello, my name is Sam. I have generalized epilepsy and have to take zonisamide. I've recently before have taken Keppra and Lamotrigine. I've only ever had 3 tonic-clonic seizures and a whole ton of monoclonic jerks ive been diagnosed since 2022. I recently had a tonic-clonic seizure in Feb of this year, and they switched me to this med. The main side effects I get from this drug were, at first was loss of appetite, and I already take Adderall, which already does the same thing, so it was really taking a toll on my body. Sleepiness, but other days I can be wide awake, and I also have been diagnosed with insomnia since middle school. The only other thing is the Dizziness or loss of coordination, but ive been like that since Feb, which could be from the seizure or the meds, but I'm also not a huge fan of water, and that's a big thing with this med.
That's all I have. Let me know if you have any questions, I would be happy to answer!!!

sincerely
Sam

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@sam2446
Hi Sam,
Welcome to our group here at Mayo Clinic Connect — glad you found us!
Thanks for sharing your experience with Zonisamide in this discussion. As other members have shared, several of the symptoms you describe are side effects of this AED.
One thing I learned firsthand: I had a tonic-clonic seizure while on Trileptal, and it turned out hydration and sodium levels played a role — some AEDs (Trileptal among them) can lower sodium, which can itself be a seizure trigger.
Have you had the chance to report these symptoms to your doctor? And have you been seizure-free since starting Zonisamide?
Chris

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