1. < Epilepsy & Seizures

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 | @minajo | Dec 20, 2023
In reply to @santosha "@minajo Has Epidiolex (medical cannabis) been tried before? I know some people with both epilepsy and..." + (show)
@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)

Jump to this post

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

REPLY
Chris Gautier | @santosha | Dec 21, 2023
In reply to @minajo "Changing from zonisamide to lamictal after year of constant weight gain, kidney values slightly elevated.All tests..." + (show)
@minajo

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??

Jump to this post

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)

REPLY
minajo | @minajo | Feb 8, 2024

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

REPLY
8 replies
Chris Gautier | @santosha | Feb 9, 2024
In reply to @minajo "My daughter might change from Zonisamide to Lamictal but dr warned of the dangerous skin rash..." + (show)
@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

Jump to this post

Hi @minajo
I had a mild skin rash with Lamictal, but nothing serious. My major problem with Lamictal was sleep, I got severe insomnia with this medication which was killing me.
Hope Lamictal works for your daughter. Among the medications AEDs I have tried (Lamictal, Tegretol, Trileptal, Gabaneurin and Vimpat), it was the one that gave me the least side effects. Every person reacts differently. What has not worked for me, might work for others.
Good luck!
Chris (Santosha)

REPLY
1 reply
hopefullibrarian | @hopefullibrarian | Feb 9, 2024
In reply to @minajo "My daughter might change from Zonisamide to Lamictal but dr warned of the dangerous skin rash..." + (show)
@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

Jump to this post

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.

REPLY
2 replies
Leonard | @jakedduck1 | Feb 9, 2024
In reply to @minajo "My daughter might change from Zonisamide to Lamictal but dr warned of the dangerous skin rash..." + (show)
@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

Jump to this post

@minajo
Although the concerns regarding Stevens Johnson Syndrome (SJS) are valid and very serious, I hope the doctor also explained it’s extremely rare especially while taking Lamictal.
Did your doctor also explain there is a genetic test to see if your at an increased risk of developing SJS? I'd definitely recommend that test if from certain Southeast Asia.
Personally, I would not hesitate taking Lamictal but it may help if you titrate more slowly to help reduce any side effects. I figured the benefits far outweigh the risks of the many seizure meds known to possibly cause SJS that I have been on over the 57 years I've had Epilepsy, not to mention all the other types of medications known to have a relationship with SJS as I imagine you have.
Take care,
Jake

REPLY
2 replies
hopefullibrarian | @hopefullibrarian | Feb 9, 2024
In reply to @jakedduck1 "@minajo Although the concerns regarding Stevens Johnson Syndrome (SJS) are valid and very serious, I hope..." + (show)
@jakedduck1

@minajo
Although the concerns regarding Stevens Johnson Syndrome (SJS) are valid and very serious, I hope the doctor also explained it’s extremely rare especially while taking Lamictal.
Did your doctor also explain there is a genetic test to see if your at an increased risk of developing SJS? I'd definitely recommend that test if from certain Southeast Asia.
Personally, I would not hesitate taking Lamictal but it may help if you titrate more slowly to help reduce any side effects. I figured the benefits far outweigh the risks of the many seizure meds known to possibly cause SJS that I have been on over the 57 years I've had Epilepsy, not to mention all the other types of medications known to have a relationship with SJS as I imagine you have.
Take care,
Jake

Jump to this post

My understanding is that titrating is essential when starting, and you have to be weaned off, when and if the time comes, as well.

REPLY
minajo | @minajo | Feb 10, 2024
In reply to @santosha "Hi @minajo I had a mild skin rash with Lamictal, but nothing serious. My major problem..." + (show)
@santosha

Hi @minajo
I had a mild skin rash with Lamictal, but nothing serious. My major problem with Lamictal was sleep, I got severe insomnia with this medication which was killing me.
Hope Lamictal works for your daughter. Among the medications AEDs I have tried (Lamictal, Tegretol, Trileptal, Gabaneurin and Vimpat), it was the one that gave me the least side effects. Every person reacts differently. What has not worked for me, might work for others.
Good luck!
Chris (Santosha)

Jump to this post

Thank you! My autistic daughter has never , in her 48 years, slept soundly, just naps i call them! Takes Melatonin but her epileptologist suggested Lamictal after Zonegran caused weight gain, mild kidney changes, ammonia elevated slightly.. her neurologist who handles autism, Seroquel and Buspar is against changing to Lamictal.. hard decision.. thank you

REPLY
minajo | @minajo | Feb 10, 2024
In reply to @hopefullibrarian "I've been on Lamictal for three years. My understanding is that rashes from Johnson Stevens Syndrome..." + (show)
@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.

Jump to this post

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..

REPLY
1 reply
minajo | @minajo | Feb 10, 2024
In reply to @jakedduck1 "@minajo Although the concerns regarding Stevens Johnson Syndrome (SJS) are valid and very serious, I hope..." + (show)
@jakedduck1

@minajo
Although the concerns regarding Stevens Johnson Syndrome (SJS) are valid and very serious, I hope the doctor also explained it’s extremely rare especially while taking Lamictal.
Did your doctor also explain there is a genetic test to see if your at an increased risk of developing SJS? I'd definitely recommend that test if from certain Southeast Asia.
Personally, I would not hesitate taking Lamictal but it may help if you titrate more slowly to help reduce any side effects. I figured the benefits far outweigh the risks of the many seizure meds known to possibly cause SJS that I have been on over the 57 years I've had Epilepsy, not to mention all the other types of medications known to have a relationship with SJS as I imagine you have.
Take care,
Jake

Jump to this post

Thank you.. i didn't know about the test! I asked epileptologist about it before we change, we just did amino acid test so doubtful dr will order..
Autism and epilepsy hard to treat,, so many drugs.. input from neuro too saying to keep Zonisamide even tho weight gain , labs bit off.. saying more risk of SJS with older AED'S so... thank you !!

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