1. < Epilepsy & Seizures

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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smokry777 | @smokry777 | Aug 9, 2023
In reply to @minajo "My 47 yr old nonverbal autistic daughter just switched from long term Dilantin use to Zonegran....." + (show)
@minajo

My 47 yr old nonverbal autistic daughter just switched from long term Dilantin use to Zonegran.. in 9 months has had 20# wt. gain, ( usually causes wt. loss!) and some changes in gfr, chloride, creatinine
But done well with behaviors! 300 mg at bedtime..no seizures so should we try reducing dose or dr suggested Lamictal?
Thanks

Jump to this post

Tried dilantin once in 1971 and had to stop because it inflated my lymph glands in my neck, had to stop. Tried it again in 1995 and gained adout 20lbs. Had to stop again in same yr. and lost 20lbs. 1-2-3. All liquid retention from the sodium from dilantin, a very old and not overly effective drug. Sure you can find a better one.

REPLY
lsittll | @lsittll | Aug 9, 2023
In reply to @minajo "My 47 yr old nonverbal autistic daughter just switched from long term Dilantin use to Zonegran....." + (show)
@minajo

My 47 yr old nonverbal autistic daughter just switched from long term Dilantin use to Zonegran.. in 9 months has had 20# wt. gain, ( usually causes wt. loss!) and some changes in gfr, chloride, creatinine
But done well with behaviors! 300 mg at bedtime..no seizures so should we try reducing dose or dr suggested Lamictal?
Thanks

Jump to this post

Hello @minajo
I take Zonegram with Depakote and Lamictal. I have not noticed any adverse side effects of it. Depakote lowers the metabolism and can result in weight gain itself. I have taken it for many years and have noticed the side effect. Zonisamide was added two years ago and no weight gain has been noticed. I know there is a minor possibility of the side effect of kidney damage with Zonegram but I have not seen and I hope I will never do so.

Laurie @lsittl

REPLY
2 replies
minajo | @minajo | Aug 9, 2023
In reply to @lsittll "Hello @minajo I take Zonegram with Depakote and Lamictal. I have not noticed any adverse side..." + (show)
@lsittll

Hello @minajo
I take Zonegram with Depakote and Lamictal. I have not noticed any adverse side effects of it. Depakote lowers the metabolism and can result in weight gain itself. I have taken it for many years and have noticed the side effect. Zonisamide was added two years ago and no weight gain has been noticed. I know there is a minor possibility of the side effect of kidney damage with Zonegram but I have not seen and I hope I will never do so.

Laurie @lsittl

Jump to this post

We did Depakote 15 years ago when epilepsy first diagnosed, ended up in wheelchair, couldn't walk, ammonia high in brain.. tried several since, settled on Dilantin but could keep level steady, had seizures, so tried Zonegran last August but kidney values off, 20# weight gain.. but being nonverbal autistic helps with behavior.. also had slight T3 drop but dr thinks okay as TSH is fine, on med for years..
Also hormones, menopause has to be considered ! Yikes, im a senior mom trying to help this 47 yr old daughter.. maybe drop 300 mg Zonegran to 250? Thanks

REPLY
1 reply
1ellent | @1ellent | Aug 9, 2023
In reply to @minajo "We did Depakote 15 years ago when epilepsy first diagnosed, ended up in wheelchair, couldn't walk,..." + (show)
@minajo

We did Depakote 15 years ago when epilepsy first diagnosed, ended up in wheelchair, couldn't walk, ammonia high in brain.. tried several since, settled on Dilantin but could keep level steady, had seizures, so tried Zonegran last August but kidney values off, 20# weight gain.. but being nonverbal autistic helps with behavior.. also had slight T3 drop but dr thinks okay as TSH is fine, on med for years..
Also hormones, menopause has to be considered ! Yikes, im a senior mom trying to help this 47 yr old daughter.. maybe drop 300 mg Zonegran to 250? Thanks

Jump to this post

Lamictal is terrible. Has really bad side effects. There may be some underlying issue with the weight gain. Zonisamide has me so skinny it's scary now. I just do not get hungry. Other than that I take 100 MG zonisamide am and 100 MG pm, have my bloodwork done every 4-6 months good to go. Been on it since 2009.

REPLY
1 reply
1ellent | @1ellent | Aug 9, 2023
In reply to @lsittll "Hello @minajo I take Zonegram with Depakote and Lamictal. I have not noticed any adverse side..." + (show)
@lsittll

Hello @minajo
I take Zonegram with Depakote and Lamictal. I have not noticed any adverse side effects of it. Depakote lowers the metabolism and can result in weight gain itself. I have taken it for many years and have noticed the side effect. Zonisamide was added two years ago and no weight gain has been noticed. I know there is a minor possibility of the side effect of kidney damage with Zonegram but I have not seen and I hope I will never do so.

Laurie @lsittl

Jump to this post

Why do you take all those seizure meds? Lamictal is really bad! Someone is totally overmedicating you, unless of course you seize constantly that's alotta dope

REPLY
minajo | @minajo | Aug 9, 2023
In reply to @1ellent "Lamictal is terrible. Has really bad side effects. There may be some underlying issue with the..." + (show)
@1ellent

Lamictal is terrible. Has really bad side effects. There may be some underlying issue with the weight gain. Zonisamide has me so skinny it's scary now. I just do not get hungry. Other than that I take 100 MG zonisamide am and 100 MG pm, have my bloodwork done every 4-6 months good to go. Been on it since 2009.

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Good to know about Lamictal, maybe dropping from 300 of Zonegran to 250 then if blood level good maybe lower?
Kidney labs slightly elevated too tho since beginning Zonegran..
Gotta revisit thyroid and then menopause has to be considered.. but all weight gain happened after Zonegran and its given for obesity so can't figure? Thanks

REPLY
lsittll | @lsittll | Aug 9, 2023
In reply to @minajo "My 47 yr old nonverbal autistic daughter just switched from long term Dilantin use to Zonegran....." + (show)
@minajo

My 47 yr old nonverbal autistic daughter just switched from long term Dilantin use to Zonegran.. in 9 months has had 20# wt. gain, ( usually causes wt. loss!) and some changes in gfr, chloride, creatinine
But done well with behaviors! 300 mg at bedtime..no seizures so should we try reducing dose or dr suggested Lamictal?
Thanks

Jump to this post

1ellent

I know there are many medications but I tolerate them well, there are no adverse side effects . The addition of Zonegram has made me seizure free for two years when I used to have uncontrollable seizures so I am not going to complain! The neurologists know what they are doing!

@lsittl

REPLY
lsittll | @lsittll | Aug 9, 2023
In reply to @minajo "My 47 yr old nonverbal autistic daughter just switched from long term Dilantin use to Zonegran....." + (show)
@minajo

My 47 yr old nonverbal autistic daughter just switched from long term Dilantin use to Zonegran.. in 9 months has had 20# wt. gain, ( usually causes wt. loss!) and some changes in gfr, chloride, creatinine
But done well with behaviors! 300 mg at bedtime..no seizures so should we try reducing dose or dr suggested Lamictal?
Thanks

Jump to this post

Hello guys,

The side effects of Lamictal vary with each patient. It has the usual side effects of dizziness, drowsiness , sleepiness, and nausea like other anticonvulsants. It can also cause headaches. Severe side effects include a rash.

@lsittl

REPLY
1ellent | @1ellent | Aug 12, 2023
In reply to @minajo "My 47 yr old nonverbal autistic daughter just switched from long term Dilantin use to Zonegran....." + (show)
@minajo

My 47 yr old nonverbal autistic daughter just switched from long term Dilantin use to Zonegran.. in 9 months has had 20# wt. gain, ( usually causes wt. loss!) and some changes in gfr, chloride, creatinine
But done well with behaviors! 300 mg at bedtime..no seizures so should we try reducing dose or dr suggested Lamictal?
Thanks

Jump to this post

Weight gain is normal with menopause. The lack of appetite may take a minute to kick in. I don't remember . But good luck with the zonisamide.

REPLY
minajo | @minajo | Nov 3, 2023

My nonverbal autistic/ epileptic daughter has elevated ammonia, 41 is latest value
We have done so many tests and it keeps coming back to change from Dilantin to Zonisamide a year ago but i saw urea cycle disease raises ammonia? But doctor won't do tests for that so now looks like we need a new AED? Can't do Depakote, Dilantin, dr suggests Lamictal.
She has very few clonic tonics, possible absence seizures but also on Seroquel, Buspar..
Her T3 just slightly low, is hypothyroid but other tests, TSH etc okay
Autism/ epilepsy a lot!!
Thanks everyone for reading!

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