1. < Epilepsy & Seizures

Lamictal, side effects?

Posted by minajo @minajo, Aug 19 12:14pm

To all who are following my desperate need for answers for my nonverbal, autistic, epileptic daughter she is now at target dose 300 mg.. went from dilantin, to zonisamide which probably caused
impaction leading to hospitalization, then sub therapeutic on lamictal at 150,status epilepticus in trauma center
Isn't sleeping ( on melatonin, trazadone a big no no!) aggressive, in residential carehome with 2:1 staff but needing Ativan .. Prior neuro didn't want Dilantin changed so discharged her but she has epileptologist who ordered rhe zonisamide, now Lamictal
Still having g. i. issues
Care home is very good but they are at wits end, as i am as her mother..
She gets extremely aggressive with attempts to even go to lab, pulls out IVs, needs restraint in hospital,
What to do?
Any lamictal users please help!
Thank you

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Chris Gautier OR Santosha | @santosha | Aug 23 5:54am
In reply to @minajo "Yes, big issue with autism is sleep problems.. rhen sleep deprivation can lead to seizures.. she..." + (show)
@minajo

Yes, big issue with autism is sleep problems.. rhen sleep deprivation can lead to seizures.. she has been on 10 mg Melatonin, last year a dr put her on Trazadone which caused things to get worse.. had to get her off ..
Course being 48 now perimenopause , soon menopause.. she is on Prednisone ..
Her care home provider is against the marijuana rx as is the neuro..
Her autism/ neuro dr recently discharged her as he wasn't happy we took her off Dilantin( many problems with blood levels, seizures after 10 years on it) said it caused the status epilepticus so now isn't even addressing her autism..
So now i just have her epileptologist who ordered zonisanide, ( caused severe constipation, impaction) now lamictal.. but she won't handle the behavior meds.. really quite a mess and so i can only hooe lamictal will work!
Thank you for all your support..

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Minajo,
I agree with @jakedduck1, Lamictal does not seem to be working well for her, unfortunately.
There are still many doctors who are against medical cannabis because they have not studied the endocannabinoid system. Epidiolex (pure CBD) is a medication that was approved by the FDA.
It seems that the medications your daughter has been and is on are bringing her more harm than benefits, just like it happened to me. If I would be in your situation, I would check for a second opinion. This friend whose son is autistic and also has epilepsy went to Mayo Clinic for a second opinion, having Epidiolex been prescribed to her son. It changed her life as well as her son's life. I have sent you her e-mail in a private message in case you are willing to exchange experiences with her.
Chris (@santosha)

REPLY
minajo | @minajo | Aug 24 11:05am

My daughter is at her target dose 300 mg lamictal and we will try to get lab level done this Monday, she will need Ativan as of course the side effects known for drug insomnia and aggressiveness are present
Her epileptologist states we knew we'd have issues but to keep going rill target dose
She suggested Klonipin for sleep but daughter did awful on Trazadone..
Shes on 10 melatonin but i wonder if Valerian root could be added? Some supplement instead of another addictive controlled med? 😵‍💫
She wouldn't get in bed last night, care home has rules!
She fell asleep in big comfy chair, i said let her just get sleep, no matter where
Sometimes my. hands tied with carehome as with the medical cannabis, they are against it.. oh my..

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