Titrating Zonisamide to Lamictal: What side effects to expect?

Posted by minajo @minajo, Dec 19, 2023

Changing from zonisamide to lamictal after year of constant weight gain, kidney values slightly elevated.
All tests for thyroid, menopause (47 yr old autistic) negative , but on Seroquel and buspar , never gained on those . behavior good on Zonisamide but 25# weight gain not in a year! Lamictal side effects??

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My husband has been in lamictal since 2020. It has been incredibly effective and seems to have no side effects. He takes Keppra also. This combination really controls his seizures. Hope this works for you!

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Hi @minajo
I have taken Lamictal but I could not stand it because it caused severe insomnia to me. I also had a skin rash, but after 6 weeks it disappeared. Indeed, this AED has fewer side effects than the other AEDs I have tried (Tegretol, Trileptal, Vimpat and Gabaneurin).
Chris (Santosha)

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@santosha

Hi @minajo
I have taken Lamictal but I could not stand it because it caused severe insomnia to me. I also had a skin rash, but after 6 weeks it disappeared. Indeed, this AED has fewer side effects than the other AEDs I have tried (Tegretol, Trileptal, Vimpat and Gabaneurin).
Chris (Santosha)

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Thank you! This is for 47 yr old with autism too.. been on Depakote ( life threatening side effects) tegretol, dilantin, now Zonisamide but causing ammonia up, kidney values elevated and 25# weigh gain in 16 months,!
Seizure specialist said Lamictal so.. no other reason for side effects, did loads of tests etc
But behavior great on Z so...

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@minajo
Has Epidiolex (medical cannabis) been tried before? I know some people with both epilepsy and autism who have had great results with medical cannabis.
Chris (Santosha)

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@santosha

@minajo
Has Epidiolex (medical cannabis) been tried before? I know some people with both epilepsy and autism who have had great results with medical cannabis.
Chris (Santosha)

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Yes, been trying to get neuro on board but he's saying " not enough positive studies etc. , blah blah 😂

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Hi @minajo
In my opinion, this is a typical answer of doctors who are not yet very much acquainted with medical cannabis treatment and its benefits. Moreover, the pharma industry lobby is strong.
Chris (Santosha)

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Well my decision to take my autistic, nonverbal , epileptic daughter from Zonisamide to Lamictal begins.. her abdominal distention, hospitalization, brought me back to original concern that 25# weight gain, ammonia, kidney values increased first began after Zonisamide initiated so only way to know is change
Question, from 300 to 200 to 150,100 finally to 50 .. dr will start Lamictal at 50 mg week.. then from 25-100 for 4 weeks till lab for Lamictal
Any ideas on this titration schedule?
She hasn't had seizure since 5/2022 on Dilantin..
Also her abdomen still distended.. dx at hospital discharge was bladder infection and fecal impaction, no gi visit yet, waiting!
Thanks

REPLY
@minajo

Well my decision to take my autistic, nonverbal , epileptic daughter from Zonisamide to Lamictal begins.. her abdominal distention, hospitalization, brought me back to original concern that 25# weight gain, ammonia, kidney values increased first began after Zonisamide initiated so only way to know is change
Question, from 300 to 200 to 150,100 finally to 50 .. dr will start Lamictal at 50 mg week.. then from 25-100 for 4 weeks till lab for Lamictal
Any ideas on this titration schedule?
She hasn't had seizure since 5/2022 on Dilantin..
Also her abdomen still distended.. dx at hospital discharge was bladder infection and fecal impaction, no gi visit yet, waiting!
Thanks

Jump to this post

My 48 yr old daughter with autism/ epilepsy on Zonisamide for several months, began adding 2# monthly tho dr said not from frug? But she ended up hospitalized with extreme abdominal distention, megacolon and needed enemas, etc.. now on Lactulose and Colace which has helped get impaction cleared a lot but does the megacolon take a long time to shrink? Bein nonverbal is so difficult for her to express pain, discomfort but she was very traumatized from hospital stay so wondering about reversal of megacolon?
Thank you
Maureen Dolman

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@minajo

Well my decision to take my autistic, nonverbal , epileptic daughter from Zonisamide to Lamictal begins.. her abdominal distention, hospitalization, brought me back to original concern that 25# weight gain, ammonia, kidney values increased first began after Zonisamide initiated so only way to know is change
Question, from 300 to 200 to 150,100 finally to 50 .. dr will start Lamictal at 50 mg week.. then from 25-100 for 4 weeks till lab for Lamictal
Any ideas on this titration schedule?
She hasn't had seizure since 5/2022 on Dilantin..
Also her abdomen still distended.. dx at hospital discharge was bladder infection and fecal impaction, no gi visit yet, waiting!
Thanks

Jump to this post

When Zonisamide titration from 300 down, to 250,then 200.. holding there until Lamictal reaches 100 target dose, then lab for level, can the Zonisamide be completely stopped if Lamictal level acceptable?.

REPLY
@minajo

Well my decision to take my autistic, nonverbal , epileptic daughter from Zonisamide to Lamictal begins.. her abdominal distention, hospitalization, brought me back to original concern that 25# weight gain, ammonia, kidney values increased first began after Zonisamide initiated so only way to know is change
Question, from 300 to 200 to 150,100 finally to 50 .. dr will start Lamictal at 50 mg week.. then from 25-100 for 4 weeks till lab for Lamictal
Any ideas on this titration schedule?
She hasn't had seizure since 5/2022 on Dilantin..
Also her abdomen still distended.. dx at hospital discharge was bladder infection and fecal impaction, no gi visit yet, waiting!
Thanks

Jump to this post

My autistic 48 yr old daughter with epilepsy is titrating down on Zonisamide , was 300,now holding at 200 till Lamictal which has started at 25,now 50 reaches 100 then lab levels but her affect, behavior has changed to becoming very loud, eating rapidly, almost a manic state..Any suggestions? Thanks

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