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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@minajo

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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My nonverbal daughter, autism and epilepsy is almost finished with Zonisamide titration which seems to have caused a fecal impaction leading to hospitalization .. now starting Lamictal, at 75 mg now , target dose 100 then blood level, she has very few seizures .. but she's very agitated, seems to have headaches as she points to head.. dr thinks 100 mg not enough? Im concerned as its for bipolar why she seems so "edgy", also slight bluish tinge to lips.. she's on Coreg for b/p.. i just hope as Zonisamide out of system the Lamictal will be okay AED for her ..any thoughts on Lamictal? Thank you

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@minajo

My nonverbal daughter, autism and epilepsy is almost finished with Zonisamide titration which seems to have caused a fecal impaction leading to hospitalization .. now starting Lamictal, at 75 mg now , target dose 100 then blood level, she has very few seizures .. but she's very agitated, seems to have headaches as she points to head.. dr thinks 100 mg not enough? Im concerned as its for bipolar why she seems so "edgy", also slight bluish tinge to lips.. she's on Coreg for b/p.. i just hope as Zonisamide out of system the Lamictal will be okay AED for her ..any thoughts on Lamictal? Thank you

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Hello! I take lamictal. I tried different meds before finding this one. It's the only one that has worked for me. All I can suggest is watch her after the other one has gone. It might be having an effect because it is leaving her system. Every med for seizures seems to have side effects and getting used to them or changing them can be very upsetting. I speak from experience. Just let your doctor know and ask questions. It helps having an idea about potential side effects and potential for the med to work. Best of luck! I hope this med works for her as well as it has for me.

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@heatherae

Hello! I take lamictal. I tried different meds before finding this one. It's the only one that has worked for me. All I can suggest is watch her after the other one has gone. It might be having an effect because it is leaving her system. Every med for seizures seems to have side effects and getting used to them or changing them can be very upsetting. I speak from experience. Just let your doctor know and ask questions. It helps having an idea about potential side effects and potential for the med to work. Best of luck! I hope this med works for her as well as it has for me.

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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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@minajo

My nonverbal daughter, autism and epilepsy is almost finished with Zonisamide titration which seems to have caused a fecal impaction leading to hospitalization .. now starting Lamictal, at 75 mg now , target dose 100 then blood level, she has very few seizures .. but she's very agitated, seems to have headaches as she points to head.. dr thinks 100 mg not enough? Im concerned as its for bipolar why she seems so "edgy", also slight bluish tinge to lips.. she's on Coreg for b/p.. i just hope as Zonisamide out of system the Lamictal will be okay AED for her ..any thoughts on Lamictal? Thank you

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Hi @minajo
I have tried Lamictal and among the 5 AEDs I have tried, this was the one I had the fewest side-effects. However, the insomnia I had with Lamictal forced my doctor to change this medication. I have been a very sensitive person to medications since childhood. I might not be a good example. With Lamictal, besides the insomnia, I had a skin rash in the first 2 months, but then it got better.
My doctor started with 25 mg and raised it to 100 mg, but this was a too high dosage for me that I could not tolerate, and so it was reduced to 50 mg.
All the best to you and your daughter
Chris (@santosha)
PS: I am nowadays on Epidiolex. Has the doctor of your daughter considered this option? There is another member of our group, whose son (he also has autism) could have his seizures stopped with Epidiolex. Epidiolex (made from medical cannabis - pure CBD) might also bring benefits to the autism of your daughter.

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