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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@minajo

Thanks! Besides the rashes were there other symptoms we would need to watch for? My daughter is nonverbal autistic so she can't express many symptoms others can..
Are rashes mild, like small red bumps or blisters? Epileptologist suggested but her neurologist said no.. doesn't think Zonisamide responsible for 25# weight gain in 18 mo, kidney values, chloride, creatinine, gfr slightly abnormal and ammonia @41
Hard decision..

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My Neurologist told me that Lamotrigine has less serious side effects than most other AEDs. I haven't had any issues with any of the things you mentioned, like weight gain, or blood tests in the abnormal range. I have labs done a few times each year, and everything is always normal.

My rashes have been varied with the most memorable being dark red patches on the back of my knees, small itchy red bumps on my thighs, and barely visible slightly burning blisters on my face. The worst thing about them is that they last a long time, but that's just how my body reacts to Lamotrigine. Take into consideration that I take the lowest effective dose -- 100mg, 2 x day, so I have no idea how my body would react to a higher dose.

The Mayo Clinic has an online page with the side effects listed as most common, less common, and rare. It's the most comprehensive list that I've seen. Here's the link:
https://www.mayoclinic.org/drugs-supplements/lamotrigine-oral-route/side-effects/DRG-20067449?p=1
You'll have to scroll down quite a way to find the lists.

I truly hope that you find the best treatment for your daughter. I can't imagine how challenging it is to have to make this sort of decision for her, especially since she's nonverbal. It sounds like you're asking the right questions, and taking every precaution. She's fortunate to have you looking out for her.

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@minajo

My daughter might change from Zonisamide to Lamictal but dr warned of the dangerous skin rash , aka Johnson Stevens syndrome?
Please reply if anyone has experienced this.. thank you
Maureen

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Hi @minajo
In those situations of hard decisions and different opinions, I believe it is always worthwhile to check for a second opinion or even a third one. In 2021, I was being prepared for a LITT surgery for my epilepsy when I decided to check for a second opinion from a neurosurgeon, who was totally against it, as this surgery would bring me a great loss of memory and would not make me free of AEDs (anti-convulsant medication). I have refractory epilepsy and AEDs did not work for me, either because I could not tolerate them or because they worsened my seizures. Checking for a second opinion was the wisest thing to do at this time I was facing a hard decision.
Before taking Lamictal, I was already having some sleep issues, but this medication has worsened my sleep much. And we know how important sleep is to control seizures. While on Lamictal I was having just naps. What helped me much was the practice of yoga nidra many times during the day, a practice which I kept since then with app practices and lessons. 30 minutes of yoga nidra can correspond to up to 3 hours of deep sleep. The app I use on my cell phone and enjoy much is called Insight Timer. See if this is possible for a person who has autism and may help your daughter.
I also truly hope you find the best treatment for your daughter. That your mind be illuminated in those moments of hard decisions.
Chris (Santosha)

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@hopefullibrarian

I Just tried yogo nidra on your recommendation, and it felt amazing. Thank you!

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Great to know that @hopefullibrarian, it made me smile!
It is always best to practice yoga nidra in the morning or early in the afternoon.
If you wish, I can share my yoga nidra practices on Insight Timer app with you by whatsapp. Just send me your number through a private message here on the site.
Have a nice evening!
Chris

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@minajo

My daughter might change from Zonisamide to Lamictal but dr warned of the dangerous skin rash , aka Johnson Stevens syndrome?
Please reply if anyone has experienced this.. thank you
Maureen

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Hi @hopefullibrarian
Great to know that, it made me smile.
It is best to practice it in the morning or early in the afternoon.
Have a nice evening!
Chris
PS: I have sent you a private message

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@hopefullibrarian

I've been on Lamictal for three years. My understanding is that rashes from Johnson Stevens Syndrome will show up in the first three months after starting the drug, and it's pretty rare. If you notice "any" rashes during that timeframe, report them to the doctor immediately. I didn't get Johnson Stevens syndrome, but I had several rashes. They varied a lot, and were in different parts of my body. I wasn't completely rash free until this last October. I reported each new one to my doctors (PCP and Neuro) they both told me that they had nothing to do with the medication. As @santosha said, "Every person reacts differently." Side effects vary. My rashes were harmless though definitely from Lamictal. My point is that, your daughter may get rashes from the med, and it's important to report them, but it doesn't mean it's serious. Other than some brain fog, and what I call "brain glitches", I've handled the drug reasonably well, and it's been effective.
Side note: The "brain glitches" are hard to explain, and I don't know if anyone else gets them. Other than being a bit awkward when having a conversation, they don't worry me.

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Hi, could you expand on the "brain glitches"? I've had experiences when I forget to take my lamictal where I exhibit symptoms of a mini-stroke—very strange. I have been unable to find ANYTHING about this even from neurologists. It would be very helpful to hear your experience.

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@jvi1991

Hi, could you expand on the "brain glitches"? I've had experiences when I forget to take my lamictal where I exhibit symptoms of a mini-stroke—very strange. I have been unable to find ANYTHING about this even from neurologists. It would be very helpful to hear your experience.

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Hi jvi1991,
I'll try to explain what the "brain glitches" are like.
It doesn't happen often. When it does, it's while I'm speaking. I sort of hit a wall, often mid sentance. I don't lose awareness--I don't lose time--and it's not the same as forgetting what I was about to say. I just can't finish. It's like I'm unable to get the words out, and I can't seem to bring myself out of it, I just keep trying. When someone else speaks, it sort of breaks the spell.
Is this at all similar to what you experience?
It's extremely rare that I forget a dose, so I don't see any correlation to that in my case.
When I've mentioned it to my doctor, it gets brushed aside like it's unrelated, but I really don't think that it is.

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@santosha

Hi @hopefullibrarian
Great to know that, it made me smile.
It is best to practice it in the morning or early in the afternoon.
Have a nice evening!
Chris
PS: I have sent you a private message

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I've been praciting yoga nidra everyday as well as doing my best to meditate. It's been very helpful in calming my anxiety. I'm so grateful that you shared this practice with us.

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@minajo

My daughter might change from Zonisamide to Lamictal but dr warned of the dangerous skin rash , aka Johnson Stevens syndrome?
Please reply if anyone has experienced this.. thank you
Maureen

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Hi @hopefullibrarian
Thank you so much for sharing your experience of yoga nidra with us. This practice of yoga nidra could help so many others with anxiety and sleep issues. And it is so simple to practice it, you just need to lie down, close your eyes, and hear what is being said in this practice.
I use mostly the free version of the app Insight Timer. But you have also free practices of yoga nidra on YouTube. In this case, I recommend looking for practices according to the Bihar School of Yoga and/or Swami Satyananda Saraswasti.
Wishing you all still a nice weekend!
Chris (Santosha)

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