Titrating Zonisamide to Lamictal: What side effects to expect?

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

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.

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!

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.

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!

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!!!

The lamictal is more of a mood stabilizer when taken for bipolar. It just keeps moods from swinging too extreme on either end. I felt a change but I became calmer. You might mention it to the doctor but changes in medicine that can affect moods take awhile to level out when the doses keep changing. Hang in there! I really hope she levels out soon. I do remember I would get sad and frustrated every time my meds would change. Maybe once they are level she will perk up. I really hope so.