Have you gone from zonisamide to lamictal?

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.

I have been taking a medication, Lamictal (lamotrigine), for about 20 years. On occasion, I have forgotten my evening dosage of 400mg. I then take it in the morning, and sometimes the next dosage too soon. Thus accidentally giving myself too much of the medication. This always gives me a small rash. This has happened more often lately, so I spoke with a new doctor about titrating down. The recommendation is to go from 400mg to 350mg. Two days after starting the new dosage I got a rash on my arm, after about 12-hours the other arm. Each day the rash grew until both lower arms and calves were covered. My new doctor was out so I went to an urgent care appointment. They had be go back up to the 400mg. Within two days the rash started to recede. I asked the pharmacist about it and he suggested maybe we should titrate down slower. My new doctor finally got back to me and said to wait until the rash went away and then try the 350mg again, and after two weeks jump to 300mg. I feel like this is too fast, but I cannot find anything online about what to do when you have a reaction to lowering your medication. If it matters, I take this drug for my mental health, not seizures.

So my question is, has anyone had a reaction to lowering their dosage to a medication and how was it treated? This is a medication that you are not supposed to just stop.

Hi @minajo
It's been a while since we last connected. How is your daughter doing?
I'd love to hear how things are going when you have a chance to update me.
Take care!
Chris

HELLO!! Right now I'm nursing my husband after a prostate enucleation, no comparison to the 49 days, nights in hospital with Lisa last year but here's her update:
The sigmoidectomy with anastomosis was Oct 2024,ileus last week Dec..
Then in January back to carehome, separation issues after I spent 24/7 with her but after a supra therapeutic in hospital 12/24 and reducing lamictal xr from 300 to 250 better but then for some reason her epileptologist reduced to 200!! Not good, another seizure so a neuro on call on weekend who knew Lisa upped to 300mg,after levels done got her to 250 where she remains, seems her sweet spot, no seizures!!
Couple UTI's but last week finally back to her UCP day program
On Miralax and Colace daily but stooling almost daily..
Changed from epileptologist to another neuro, met her and she's keeping lamictal at 250,her Seroquel at 75 mg 100 pm and Busparvat 20 am and pm
Still has insomnia but giving lamictal am seems to help a bit, added Melatonin 10 prnAnother odd behavior, autism? is her refusal to sleep in bed! Happened during pain from volvolus but we got foam topper, changed roommate, etc
She prefers a big leather chair, padded with pillows and big ottoman
They are okay with it at care home as behavior much better after colon surgery so,?
I worry as she's 49 it could be arthritis ( I've had 2 hips replaced) or menopause or??
Anyhow thank you all for following my saga!
Older sister has hEhlers Danlos so that's connected with autism also.
Right now hoping hubby pees after catheter out Monday! Had Foley for 7 months
And this retired nurse77 yrs, is needing a vacation:)
Love this site!!

@minajo
Hello Maureen!
Thank you for sharing this update.
What a journey you've been on with both Lisa and now with your husband's recovery!! It sounds exhausting, but I'm so glad to hear Lisa has found her spot with the Lamictal at 250mg and is seizure-free again. 🙏 That must be such a relief after all those medication adjustments.
If sleeping in the leather chair is working for Lisa and the care home is supportive of it, sometimes we have to go with what brings comfort and stability, especially after everything she's been through.
I hope your husband's catheter removal goes smoothly on Monday. You truly deserve a vacation!
Sending positive thoughts for you, Lisa, and your husband. 🙌
Chris

I've been on lamotrigine for about 28 years as either monotherapy or adjunct therapy. The biggest issue I've had was (and now no longer do) extreme itching, to the point of giving myself bruises when I scratch. Right now it is adjunct therapy with zonisamide. The aphasia I get from zonisamide is far worse than the itchiness from lamotrigine, IMO. Don't know if that helps.

@erikadschmidt- that sounds like some horrible itching. What made this extreme itching stop for you?