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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Hello, i write on behalf of my 48 year old nonverbal autistic/epileptic daughter.. been having issues with Zonisamide, 30# weight gain in 16 months, some kidney values slightly up, ammonia was up but treated, been on birth control to stop periods for 20 years, 5 years ago taken off estrogen for blood pressure but on mini pillNow thinking change to Lamictal but dr wants to abruptly stop progestin thinking it causes weight gain, never had weight issues till ZonisamideAlso on Seroquel for many years , behaviors,and recently has lip smacking etcCan't change that too ?I think low dose progestin okay so her hormones don't get affected while changing AED?I am conservator/ mom over 75 trying to make good decisions..Any opinions welcome! Thanks

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My daughter (48, nonverbal, autistic, epileptic)was just hospitalized for intestinal impaction and has been on Zonisamide for 18 mo.. also Seroquel ( 8 years,low dose)and wondering if anyone has had this happen? She was seriously ill, almost needed surgery..Thank you

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@minajo

My daughter (48, nonverbal, autistic, epileptic)was just hospitalized for intestinal impaction and has been on Zonisamide for 18 mo.. also Seroquel ( 8 years,low dose)and wondering if anyone has had this happen? She was seriously ill, almost needed surgery..Thank you

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@minajo
Isn’t Seroquel more likely to cause constipation than Zonisamide? Did the doctor say the Zonisamide was the cause?
Take care,
Jake

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@minajo

My daughter (48, nonverbal, autistic, epileptic)was just hospitalized for intestinal impaction and has been on Zonisamide for 18 mo.. also Seroquel ( 8 years,low dose)and wondering if anyone has had this happen? She was seriously ill, almost needed surgery..Thank you

Jump to this post

@minajo
Good Morning,
I am sorry to hear that!
According to my gastroenterologist, all neurological medications have a direct impact on the gut because they cause microbiota imbalance. As the doctor said, one has to evaluate the costs versus the benefits of those medications, because they have consequences.
Early last year, I was diagnosed with SIBO (small intestinal bacterial overgrowth) caused by the AEDs I have taken for 3 years. I am still treating my SIBO, it is not a fast process. My mother who has Alzheimer's has also been having consequences of the neurological medications she has been taking.
It is sad to see that neurologists and epileptologists do not tell us about the consequences of taking AEDs and other neurological medications!
Today my epilepsy is being treated with medical cannabis, trigger management, and diets and I am far better.
If you have not already done it, I recommend seeing a gastroenterologist doctor.
Wishing you and your daughter all the best.
Chris (Santosha)

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@jakedduck1

@minajo
Isn’t Seroquel more likely to cause constipation than Zonisamide? Did the doctor say the Zonisamide was the cause?
Take care,
Jake

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Yes, Seroquel does that but my daughters weight gain, kidney issues, ammonia started month after the Zonisamide started.. she's been on Seroquel for some time and never had an impaction till now.. hard to get answers ..
Thanks

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@santosha

@minajo
Good Morning,
I am sorry to hear that!
According to my gastroenterologist, all neurological medications have a direct impact on the gut because they cause microbiota imbalance. As the doctor said, one has to evaluate the costs versus the benefits of those medications, because they have consequences.
Early last year, I was diagnosed with SIBO (small intestinal bacterial overgrowth) caused by the AEDs I have taken for 3 years. I am still treating my SIBO, it is not a fast process. My mother who has Alzheimer's has also been having consequences of the neurological medications she has been taking.
It is sad to see that neurologists and epileptologists do not tell us about the consequences of taking AEDs and other neurological medications!
Today my epilepsy is being treated with medical cannabis, trigger management, and diets and I am far better.
If you have not already done it, I recommend seeing a gastroenterologist doctor.
Wishing you and your daughter all the best.
Chris (Santosha)

Jump to this post

With my daughter being nonverbal autistic, just getting the impaction addressed during hospitalization was priority, she had psychotic episode maybe from Ativan but will see g. i after she is stable.. has had colonic interposition for several years with no ill effects, so very hard to fully diagnose with her comorbid autism and epilepsy!
Thanks

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@becca13

No I do not have any issues you asked about- but when I took to many or doseage to high- I was fatigued and this last winter when my neurologist reduced my Zonisimide I had so much more energy- So I didn’t know then lol there was more - but I have in the past with other meds been fuzzy or off balance I have been on a gambit of drugs I was diagnosed at 12- I was on Dilantin /Celonton/when I was younger- went thru a period of time I was on Valproic acid/Depekene Felbatol and they all worked for periods of time but this combination so far long term has been best for me. My memory is very good for 73 I try to read and
Do strategy games etc I am a caregiver for my husband who has dementia.
Since divalproex was just recently added this winter I don’t how long term effect will be. My main concern has always been my organs and so far all is well and I never had kidney stones. I am thankful. Also this winter I used Lyft as I was having a medicine adjustment and that was a big relief for me.
I hope this helped some 💜.

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I thought I would respond about side effects of the divalproex- my platelets have dropped to 28- so we will reduce that, eventually eliminating it and possibly going back to increasing Zonisimide and /or Lamectal or some other drug to take its place.
Always watch blood levels mine have always run low but now dangerously so- time for me to change 😟

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