My experience with zonisamide for seizures (a sulfa drug)

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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@waterryan

Completely understand and can sympathize with the experience with Keppra. My experience with Keppra was absolutely miserable as well. Ironically that was the one drug the doctors kept saying had the least side effects and was the most widely used/accepted AED. Got prescribed Vimpat but didn't fill the prescription because I can't afford a drug that costs a mortgage payment per month (~$1200 and a mere ~$350 after insurance). Hence why I continue to be on Zonisamide, which work well, keeps seizures at bay, and has a minimum of side-effects. The worst I have to deal with is the fact it is a diuretic.

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@waterryan

Good to know that Zonisamide keeps seizures at bay for you. I have not noticed any side effects to the medication. I drink lots of water daily and have not seen the combo affect me. Occasionally I just have a day when my body loses a lot of fluid at night. Do you notice the diuretic effect regularly? I take three a day. Do you mind sharing how much you take?

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I take Zonegran and Depekote and after 42years I’m seizure free for 10 now! Unfortunately menopause has Depekote levels all over the place, keeping fingers crossed!

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@laneyh

I take Zonegran and Depekote and after 42years I’m seizure free for 10 now! Unfortunately menopause has Depekote levels all over the place, keeping fingers crossed!

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Hello @laneyh
Great to know the Zonegran has been so GREAT for you.
I just passed my one year of being seizure-free. No seizures since I've taken it.
I' hope it remains that way until eternity.

Laurie

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@colleenyoung

I'm tagging fellow members @lady35 @dhramsey @lmcquade and @searching71, who will be interested in your experience with zonisamide (Zonegran),

@lsittll, how long have you been taking the combination of Lamcital, Depakote and zonisamide? Any side effects?

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Hello @ colleen young

I have been on the combination of Lamotrigine, Depakote and Zonisamide for about one and a half years now. There have been no side effects. The only thing that has been seen is miraculous results.

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@lsittll

Hello @laneyh
Great to know the Zonegran has been so GREAT for you.
I just passed my one year of being seizure-free. No seizures since I've taken it.
I' hope it remains that way until eternity.

Laurie

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@Isittll
There was a podcast a while back and one thing they said was it's not so much the combination of drugs but the last one added that usually helps decrease seizures.
definitely some truth to that statement because I know a man in Africa who is on multiple convulsing and I suggested he talk to his doctor about phenobarbital which he did. The doctor stopped his other drugs and put him on phenobarbital only and he hasn’t had a seizure since.
I believe that the Mayoclinic podcasts are with watching. I don't have a link to the podcast I referred to earlier.
🎉Congrats🎉!!!
Jake

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@lsittll

@1710dave
I am sorry to hear the doctor is no help at all. Unfortunately that is how some of them are. I have taken lamictal for about fifteen years. I am on a hefty dose of 350mg daily. I have never noticed any side effects with it. The only potential side effect of it is a rash. Depakote I have taken for about fifty years. It can cause drowsiness. The only negative side effect I have found with it is it makes dieting a great challenge. The best of luck.

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Hello,

I noticed your message about taking depakote for 5o years. My son has been on depakote for around 12 and the past few years he is having a heard time retaining info. About a year ago he started a plumbing apprenticeship and is really noticing that he is unable to obtain any information. He forgets really easily like what he did the day before and his ocd has gotten really bad. At first I thought it was adult add but after reading about depakote I am thinking maybe its the medicine. Have you ever experienced any of this. We get nowhere with the doctor. His primary care doctor proscribed prozac?? and his nero just kind of ignores it?? Anyhow any info on this will help. Maybe its time to switch siezure med?

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@tlb101175

Hello,

I noticed your message about taking depakote for 5o years. My son has been on depakote for around 12 and the past few years he is having a heard time retaining info. About a year ago he started a plumbing apprenticeship and is really noticing that he is unable to obtain any information. He forgets really easily like what he did the day before and his ocd has gotten really bad. At first I thought it was adult add but after reading about depakote I am thinking maybe its the medicine. Have you ever experienced any of this. We get nowhere with the doctor. His primary care doctor proscribed prozac?? and his nero just kind of ignores it?? Anyhow any info on this will help. Maybe its time to switch siezure med?

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@tlb101175
First of all, First of all, if I were you I’d be looking for a new neurologist.
Seizure meds, unfortunately are notorious for causing attention and concentration problems which have a direct bearing on memory. Most and possibly all seizure meds have the potential to cause some degree of drowsiness which may be directly related to memory issues.
They can also cause the inability to recall words and thoughts that you already know and is quite common in Epilepsy patients.
Among some researchers it is debatable if cognitive problems are caused by seizure medication. Since many studies have concluded that people with epilepsy score lower, and have more problems with many cognitive functions I have little to no doubt that if you conducted a poll amongst people with epilepsy most, if not all would say they have memory and other cognitive problems.
Depakote, an older medication which seems to cause more cognitive impairment than some of the newer ones, however, just because they are newer doesn't necessarily make them better for everyone.
There are newer drugs with many problems the older drugs cause like Topamax, Zonegran and one released in 2020 that I can’t think of the name of it and possibly others.
One problem with changing medications is if your sons seizures are currently controlled.
One problem with changing medications is if your sons seizures are currently controlled and if he needs to drive that’s something to consider. Why was the prozac prescribed?
Take care,
Jake

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Thank you for the information you shared a new neurologist is already in the works. He was prescribed the prozac because he told his primary doctor he was having problems at work concentrating, retaining info, and his ocd is to the point where it is interfering with his life and getting places on time. Like he has to make sure the door is lock several times before it feels right in his mind. He told his neurologist this and she just said everyone has some form of ocd and didn't seem concerned at all which is why he brought it up to his primary care. He is very nervous to switch seizure meds. Maybe we could start by lowering the dose? he takes 1000mg every night.

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In short I believe the Prozac is mainly for the ocd and to help control the thoughts in his mind so maybe it will help him to concentrate more? I wasn't with him at these appointments he is 21 so I rely on him to tell the doctors these things and then he can never remember what they tell him so as soon as we get into this new neuro I'll be sure to go but everything is a process these days!

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