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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I would say that the least problematic cause for constipation would be the zonisamide the of the seizure meds listed but it depends on the person. Does she drink a lot of water and get plenty of exercise? Does she take stool softeners and/or Metamucil or similar. I've taken seizure medicines for almost 60 years and have had this problem from the beginning. Occasionally, I take magnesium citrate, which is a liquid-type laxative, but I don't take it very often.
Sometimes they're just really isn't a lot you can do and just have to do the best you can. I'm sorry to hear about the aggressive behavior. Is that type of behavior all the time or only when she has seizures? Has your doctor been to a G.I. doctor to get their suggestions of what you might be able to do. One Emergency room Dr. suggested that I take a stool softener as well as a certain type of laxative, but I can't remember the name of it. What he suggested definitely helped, but I no longer take it any longer, and I can't remember the name of it.
Take care,
Jake

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Oops, I meant daughter not doctor

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Hi @minajo
I am very sorry to get this news from you and your daughter.
She probably is aggressive because she is not sleeping. This happened to me when I took Lamictal because I also could not sleep. Though it is one of the AEDs with fewer side effects, as I have already mentioned, it can interfere with sleep. Not sleeping was the worst side-effect I have experienced with AEDs. Desperate to get some sleep, I have tried many sleep medications (natural and allopathic medication, acupunture). None of them really helped me to get a better sleep. I could sleep with some allopathic medication, but the sleep was not recovering and I had nightmares. What has helped me to restore my sleep was to get off the AEDs and change to medical cannabis. Yoga nidra practices during the day were very important to me at that time, as 30 minutes of yoga nidra can correspond to up to 3 hours of sleep. But because of autism, this is a yoga practice that perhaps would be difficult for your daughter to do.
Again, if I were in your place, I would ask the doctor about Epidiolex. There is another person in this group (or in another one), who also has a son with epilepsy and autism and got much better with Epidiolex. I can not remember the name she uses in the group, but I do have her personal contacts. If you are interested, I can ask her is she is willing to talk to you. If you are interested, private message me.
My best wishes!
Christine

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This is not a sophisticated solution, but maybe your daughter will comply with a daily dose of prunes -- either 5-6 whole or chopped (any brand but I prefer Italian) or 8 oz. juice, for constipation caused by PD, does the trick for me. I also take a fair amount of Lamictal daily for depression with no side effects. I'm plugged into this group because close family members suffer from epilepsy. Challenges with your dear daughter are immense and I wish you my very best.

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@jakedduck1

I would say that the least problematic cause for constipation would be the zonisamide the of the seizure meds listed but it depends on the person. Does she drink a lot of water and get plenty of exercise? Does she take stool softeners and/or Metamucil or similar. I've taken seizure medicines for almost 60 years and have had this problem from the beginning. Occasionally, I take magnesium citrate, which is a liquid-type laxative, but I don't take it very often.
Sometimes they're just really isn't a lot you can do and just have to do the best you can. I'm sorry to hear about the aggressive behavior. Is that type of behavior all the time or only when she has seizures? Has your doctor been to a G.I. doctor to get their suggestions of what you might be able to do. One Emergency room Dr. suggested that I take a stool softener as well as a certain type of laxative, but I can't remember the name of it. What he suggested definitely helped, but I no longer take it any longer, and I can't remember the name of it.
Take care,
Jake

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Thank you, yes, she's on Lactulose, Miralax, Colace .. too much..
Her behavior escalated after she went into status epilepticus three weeks ago, but has been seizure free since those seizures at 250 mg Lamictal
Her autism complicates so much as she's nonverbal roo so g i. pain can cause behavior too..
Not much sleep even with Melatonin and that makes matters worse
We're hanging in day to day and just hope she gets a break soon, from seizures and her g. i. issues.
Thank you for your support!!

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@minajo
It doesn't sound like the Lamictal is controlling her seizures, especially if she goes into status epilepticus. I also have a history of Status with long term comas. I hope they didn't have to put her into an induced coma to stop her seizures. Was this her first time having status seizures?
Have you mentioned to the doctor about changing, increasing the Lamictal dose or an adjunctive medicine?
Can your daughter communicate, perhaps in some type of distressed behaviour she is having drug side effects?

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@lagiaconda

This is not a sophisticated solution, but maybe your daughter will comply with a daily dose of prunes -- either 5-6 whole or chopped (any brand but I prefer Italian) or 8 oz. juice, for constipation caused by PD, does the trick for me. I also take a fair amount of Lamictal daily for depression with no side effects. I'm plugged into this group because close family members suffer from epilepsy. Challenges with your dear daughter are immense and I wish you my very best.

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while I was taking Vimpat, I had severe constipation. What helped me was a daily drink recommended by my family doctor: cole, dry prunes and papaya. It helped me a lot!
Chris (@santosha)

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Hi @minajo
Perhaps your daughter is having this aggressive behavior because she can not sleep well. As I mentioned in another post, insomnia was the worst side effect I had while taking Lamictal. I also became aggressive during the period of insomnia.
Chris (@santosha)

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@santosha

while I was taking Vimpat, I had severe constipation. What helped me was a daily drink recommended by my family doctor: cole, dry prunes and papaya. It helped me a lot!
Chris (@santosha)

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I want to try your concoction of prunes and papaya because I like variety and I always look for natural or organic remedies. Many thanks!

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@santosha

Hi @minajo
Perhaps your daughter is having this aggressive behavior because she can not sleep well. As I mentioned in another post, insomnia was the worst side effect I had while taking Lamictal. I also became aggressive during the period of insomnia.
Chris (@santosha)

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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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