1. < Epilepsy & Seizures

Have you gone from zonisamide to lamictal?

Posted by minajo @minajo, Oct 19, 2023

My 47 yr old nonverbal autistic/epileptic was switched year ago due to Dilantin problems, since on Zonisamide her creatine, chloride has increased, she's gained 22# in 14 months,
We just did hormones and FSH, etc doesn't point to menopause but ammonia is 41( normal under 33)
She had over 100 on Depakote
Seizure specialist doesn't think its Zonisamide but no other med changes, diet or activity level in year so if not Zonisamide what???
If we change, dr suggests Lamictal..
Anyone go from zonisamide to Lamictal?
Thank you..

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Leonard | @jakedduck1 | May 18, 2024
In reply to @minajo "Hello all. My ongoing story with my 48 yr old daughter, autism and epilepsy, nonverbal.. she..." + (show)
@minajo

Hello all.
My ongoing story with my 48 yr old daughter, autism and epilepsy, nonverbal.. she just finished titration off Zonisamide.. even her kidney values have gone back to normal, abdominal issues leading to impaction and hospitalization much better! I told epileptologist for months Zonisamide wrong bit she disagreed(:
So now Lamictal, went from 25-100 over 8 weeks, some issues with headaches, behavior, affect , but yesterday first blood serum at 2.9( normal 2.5-15)
So low end of normal, no seizures to date but only two weeks at 100 mg in morning.. Zonisamide was pm but now should we do Lamictal at night, maybe twice a day? its a XR but can cause insomnia..
She takes melatonin at night, also on Seroquel 150 a day and buspar 30 but sleep disorders common in autism .. forever with her but her mornings on Lamictal seems to !cause behavior, she's been doing little, bit lethargic so any opinions, advice appreciated as she is nonverbal so trying to figure her out! Thank you all!!

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@minajo
Because Lamictal is extended release it shouldn't need to be taken more than once a day. Always take it at the same time. I have always taken my seizure meds whether immediate or time released once a day (with doctors permission) because of memory issues.
Blessings,
Jake

REPLY
1 reply
minajo | @minajo | May 18, 2024
In reply to @jakedduck1 "@minajo Because Lamictal is extended release it shouldn't need to be taken more than once a..." + (show)
@jakedduck1

@minajo
Because Lamictal is extended release it shouldn't need to be taken more than once a day. Always take it at the same time. I have always taken my seizure meds whether immediate or time released once a day (with doctors permission) because of memory issues.
Blessings,
Jake

Jump to this post

Thank you, yes i see..
Just trying to figure if it will cause insomnia given in pm as another person on this site stated.. not good for autism.. but seems to cause lethargy, no interest in doing daily activities as its given in morning now
Also for bi polar so hoping things change soon..
Big decision to change even time of day !
Thanks..

REPLY
Leonard | @jakedduck1 | May 18, 2024
In reply to @minajo "Hello all. My ongoing story with my 48 yr old daughter, autism and epilepsy, nonverbal.. she..." + (show)
@minajo

Hello all.
My ongoing story with my 48 yr old daughter, autism and epilepsy, nonverbal.. she just finished titration off Zonisamide.. even her kidney values have gone back to normal, abdominal issues leading to impaction and hospitalization much better! I told epileptologist for months Zonisamide wrong bit she disagreed(:
So now Lamictal, went from 25-100 over 8 weeks, some issues with headaches, behavior, affect , but yesterday first blood serum at 2.9( normal 2.5-15)
So low end of normal, no seizures to date but only two weeks at 100 mg in morning.. Zonisamide was pm but now should we do Lamictal at night, maybe twice a day? its a XR but can cause insomnia..
She takes melatonin at night, also on Seroquel 150 a day and buspar 30 but sleep disorders common in autism .. forever with her but her mornings on Lamictal seems to !cause behavior, she's been doing little, bit lethargic so any opinions, advice appreciated as she is nonverbal so trying to figure her out! Thank you all!!

Jump to this post

@minajo
Insomnia is a potential side effect and not good for Epilepsy either. But who's to say it won't cause drowsiness and aid in sleep instead.
It didn't seem to make any difference if I took my seizure meds, although not Lamictal at least not that I remember at night or during the day. My level of fatigue was the same.
Considering the combination of medications she's taking it seems some degree of fatigue is inevitable. What does the doctor recommend?
Jake

REPLY
Chris Gautier | @santosha | May 19, 2024
In reply to @minajo "Hello all. My ongoing story with my 48 yr old daughter, autism and epilepsy, nonverbal.. she..." + (show)
@minajo

Hello all.
My ongoing story with my 48 yr old daughter, autism and epilepsy, nonverbal.. she just finished titration off Zonisamide.. even her kidney values have gone back to normal, abdominal issues leading to impaction and hospitalization much better! I told epileptologist for months Zonisamide wrong bit she disagreed(:
So now Lamictal, went from 25-100 over 8 weeks, some issues with headaches, behavior, affect , but yesterday first blood serum at 2.9( normal 2.5-15)
So low end of normal, no seizures to date but only two weeks at 100 mg in morning.. Zonisamide was pm but now should we do Lamictal at night, maybe twice a day? its a XR but can cause insomnia..
She takes melatonin at night, also on Seroquel 150 a day and buspar 30 but sleep disorders common in autism .. forever with her but her mornings on Lamictal seems to !cause behavior, she's been doing little, bit lethargic so any opinions, advice appreciated as she is nonverbal so trying to figure her out! Thank you all!!

Jump to this post

@minajo
I agree with Jake when she says that XR should be taken just once a day.
Lamictal has caused much insomnia to me and this is the reason why I could not continue with this medication. Because of that, my doctor at that time, has changed the intake of Lamictal from the evening to the morning to see if my sleep would improve. It didn't. Insomnia is one of the most common side effects of this drug. Did your daughter have insomnia problems before starting Lamictal?
Chris (@santosha)

REPLY
tonyde | @tonyde | May 19, 2024
In reply to @minajo "Hello all. My ongoing story with my 48 yr old daughter, autism and epilepsy, nonverbal.. she..." + (show)
@minajo

Hello all.
My ongoing story with my 48 yr old daughter, autism and epilepsy, nonverbal.. she just finished titration off Zonisamide.. even her kidney values have gone back to normal, abdominal issues leading to impaction and hospitalization much better! I told epileptologist for months Zonisamide wrong bit she disagreed(:
So now Lamictal, went from 25-100 over 8 weeks, some issues with headaches, behavior, affect , but yesterday first blood serum at 2.9( normal 2.5-15)
So low end of normal, no seizures to date but only two weeks at 100 mg in morning.. Zonisamide was pm but now should we do Lamictal at night, maybe twice a day? its a XR but can cause insomnia..
She takes melatonin at night, also on Seroquel 150 a day and buspar 30 but sleep disorders common in autism .. forever with her but her mornings on Lamictal seems to !cause behavior, she's been doing little, bit lethargic so any opinions, advice appreciated as she is nonverbal so trying to figure her out! Thank you all!!

Jump to this post

I take 400mg Lamictal at bedtime and 600 mg Trileptal, 300 mg in AM and 300 mg at bedtime and experienced both fatigue and sleep disturbance for several months until my body adjusted. I stayed with it because my seizures were finally under controlled after years trying to find the right mix of meds.

Everyone reacts to meds differently, there's no way to know what works until you try it, talk to your doctor, maybe half and half will help. Be careful making sudden change, it might be best to take the second half at dinner and gradually work towards bedtime.

I've found taking my meds with food, breakfast in AM, snack at PM helped.

REPLY
1775house | @1775house | May 27, 2024
In reply to @minajo "Hello all. My ongoing story with my 48 yr old daughter, autism and epilepsy, nonverbal.. she..." + (show)
@minajo

Hello all.
My ongoing story with my 48 yr old daughter, autism and epilepsy, nonverbal.. she just finished titration off Zonisamide.. even her kidney values have gone back to normal, abdominal issues leading to impaction and hospitalization much better! I told epileptologist for months Zonisamide wrong bit she disagreed(:
So now Lamictal, went from 25-100 over 8 weeks, some issues with headaches, behavior, affect , but yesterday first blood serum at 2.9( normal 2.5-15)
So low end of normal, no seizures to date but only two weeks at 100 mg in morning.. Zonisamide was pm but now should we do Lamictal at night, maybe twice a day? its a XR but can cause insomnia..
She takes melatonin at night, also on Seroquel 150 a day and buspar 30 but sleep disorders common in autism .. forever with her but her mornings on Lamictal seems to !cause behavior, she's been doing little, bit lethargic so any opinions, advice appreciated as she is nonverbal so trying to figure her out! Thank you all!!

Jump to this post

Hi !, Well my first and foremost comment is never take more or less seizure meds than has been prescribed, now following on never wait to take your seizure meds even if it is only a few hours before your next dose is due. NOW I say this only based on my neurologist who is an epileptologist has scolded me so many times for procrastinating while trying to think if is it too close to taking one dose just ..... apart; he explained it to me this way Lamictal is naturally a slow releasing drug so even taken close together one time is not going to harm you. Again ANYONE out there who needs to correct me do so. Lamictal XR is as many have said is extended release so I would say take it when it is the easiest to take/ remember. I take Lamictal and Zonisamide, I've taken upward of Lamictal 250mg twice a day and Zonisamide 300mg twice a day. They ( the internists) have lowered the Lamictal to 100mg but over the last few months I have started having headaches (?) except for my issues with the doctors here, nothing has ever seemed better or worse. What amazed me was the Kidney and digestive problems from Zonisamide? I never heard that I have both and chronic kidney disease if this is common could changing away help my kidney also my endocrinologist & nephrologist would be interested not as clinical proof but perhaps as a reason to check to see if any of their patients who are epileptics also take Zonisamide and have poor A1c, Glucose and Creatinine levels, well new possibilities, you sure helped me I hope I "said" something that help. Take Care

REPLY
minajo | @minajo | Jun 14, 2024

Hello support friends
For my nonverbal, autistic , epileptic daughter.. shes been off Zonisamide a month, titrated to 100 mg Lamictal month ago, given A.M.as XR brand name level was 2.9 month ago (2.5-15 normal) but has started having " manic" episodes, urine accidents, falling asleep mid morning, morning.. hyper at times, affect, loud with few verbalizations she has...
Getting new level but takes 5-8 days to get results
Does it sound like dose just too low? Dr only increases by 25 mg every other week but will it help?
She might be having seizure activity with these symptoms or is it from Lamictal? I can't change drug again!
Thanks to all!

REPLY
1 reply
Leonard | @jakedduck1 | Jun 14, 2024
In reply to @minajo "Hello support friends For my nonverbal, autistic , epileptic daughter.. shes been off Zonisamide a month,..." + (show)
@minajo

Hello support friends
For my nonverbal, autistic , epileptic daughter.. shes been off Zonisamide a month, titrated to 100 mg Lamictal month ago, given A.M.as XR brand name level was 2.9 month ago (2.5-15 normal) but has started having " manic" episodes, urine accidents, falling asleep mid morning, morning.. hyper at times, affect, loud with few verbalizations she has...
Getting new level but takes 5-8 days to get results
Does it sound like dose just too low? Dr only increases by 25 mg every other week but will it help?
She might be having seizure activity with these symptoms or is it from Lamictal? I can't change drug again!
Thanks to all!

Jump to this post

@minajo
I don't know but I suppose it depends on what you're trying to accomplish. If you're trying to stop seizures and it's effective in doing that then I wouldn't worry about the dose. If seizures start to reoccur then I would talk to the doctor about increasing it. If you're intent is both seizure control and a mood stabilizer And it's helping one, but not the other I would ask the doctor if an increase would help both conditions.
What type of seizures is she having? Are you able to distinguish if she's having side effects of the medication?
Take care,
Jake

REPLY
heatherae | @heatherae | Jul 4, 2024
In reply to @minajo "Thank you! It's hard as my daughter is nonverbal autistic so when side effects happen her..." + (show)
@minajo

Thank you! It's hard as my daughter is nonverbal autistic so when side effects happen her behavior changes.. she's supposed to get to 100 mg daily, been doing 25,then 50,then 75 mg every two weeks so still at 75 while other drug has two more weeks till stopped.. Dr wanted Lamictal at 200 but she hasn't had seizure for two years so hope if we get level okay at 100 we won't need higher dose.. She is very unmanageable at lab so even that is hard.
Might i ask what your dose is? What dose did you start at? Do you do labs often and how is your level?
Thank you so much!

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Sorry it took so long to respond! I take 300mg. I started at 150 and over the years they have had to raise it. I was taking 400mg but as I got older and my metabolism changed we had to drop it to 300 because my levels got too high. I have been on it since 2012. I only take labs once a year unless I seem to have anything health wise happening. Then my neurologist just double checks that I am still good. There might be adjustments that need to be made on the doses but when you notice a difference you can discuss it with the doctor so her levels are good. I hope she is doing good!

REPLY
1 reply
minajo | @minajo | Jul 4, 2024
In reply to @heatherae "Sorry it took so long to respond! I take 300mg. I started at 150 and over..." + (show)
@heatherae

Sorry it took so long to respond! I take 300mg. I started at 150 and over the years they have had to raise it. I was taking 400mg but as I got older and my metabolism changed we had to drop it to 300 because my levels got too high. I have been on it since 2012. I only take labs once a year unless I seem to have anything health wise happening. Then my neurologist just double checks that I am still good. There might be adjustments that need to be made on the doses but when you notice a difference you can discuss it with the doctor so her levels are good. I hope she is doing good!

Jump to this post

Thank you! Well my nonverbal, autistic, epileptic daughter had been on Dilantin for many years, i knew her levels, seizure threshold then after too many lab trips, seizure we did Zonisamide which led to severely impaction, hospitalization, very traumatic.. titration took 10 weeks to get her off, but started Lamictal from 25-100 , again many weeks.. at 100 mg her level was only 2.2 so upped to 125 xr in am.. but had seizure so now going to 200 mg at 25 increases every 2 weeks..
Had Covid too during this.. but im noticing her ' affect' is different, doesn't seem happy tho Lamictal for bi polar? She seems not to focus also had some small little bumps, not widespread rash but was checked in urgent care to r/o Stephens Johnson syndrome.. dr said no..
Will her personality change as she goes up to 200 mg?
She is autistic and can have behavior issues but not now, just seems dull, subdued.. i really don't want another druf change..
Also on Seroquel and Buspar for years..
Thank you!!!

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