Lamictal side effects

Posted by minajo @minajo, Jul 18, 2024

My nonverbal daughter, autism, epilepsy is titrating from 200( after 9 minutes seizure and one after in ambulance) to 300 XR brand name at 25 mg increase every week but seems especially sad, just no interest in doing simple things, like puzzle, wordsearch books.. She is low functioning on autism spectrum but just seems lifeless
No more seizures past week but if Lamictal for bipolar will she just get more depressed as dose goes up?
We had a cheery, happy engaged daughter, now not so
Also takes Seroquel and Buspar, has for years
After disaster with Zonisamide we hoped this drug would work .
She was on Dilantin for many years but always had to go to lab for levels, adjust the doses..
She can't talk but everyone sees the difference but doctors only want seizure control..
Thanks to all in this group !

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Hi @minajo
Depression is mentioned as one of the side-effects of Lamictal according to this link: https://www.mayoclinic.org/drugs-supplements/lamotrigine-oral-route/side-effects/drg-20067449?p=1. But please do also check the leaflet that comes together with the medication. It would also be interesting to look at interactions with other medications (it is also mentioned in this link I copied you).
Lamictal was the first AED I took and one of the ones I tried with fewer side effects. I had first mild skin rash and then severe insomnia, which is the reason why the doctor took me out of this medication.
Please, keep in mind that every person reacts differently to those medications. What might work for some, might not work for others.
I believe it would be interesting to talk to the doctor and report those mood changes.
I hope your daughter gets better and finds the right medication for her seizures soon!
Chris (@santosha)

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minajo,
I'm not in this group but with the enormous extended family I have (87 first cousins), I have several relatives who suffer from seizures, including a brother.
I am truly sorry your daughter has such challenges, as you must also have, parenting her. I deeply feel for you.
Have you asked your daughter's doctor(s) about TMS - Transcranial Magnetic Stimulation? Over the past four years, I've completed three cycles of TMS to treat severe depression. Several anti-depressants (I've tried 12-14) worked for a while but not permanently. TMS is noninvasive and it's brought me back to life three times! From my understanding, TMS was originally used to treat seizures and it was "discovered" that it took away patients' depression as well. The description you give of your daughter definitely sounds as though she's a very depressed girl. Some of her medications may help, but it seems as though taking too many medications may be harming her. I took Lamictal with Cymbalta to treat depression and it didn't cause me to be more depressed. In any event, talk with your daughter's physicians about TMS. Also research TMS to familiarize yourself with it. I wish you and your daughter the best life has to offer! May she heal and bring your family peace and relief!

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I do very much agree with @lagiaconda
I got into a deep depression in my second year of treatment of epilepsy and medications were harming more than bringing benefits. It was when I did TMS (transcranial magnetic stimulation) for some months. It was fantastic and I recovered from my depression. As @lagiaconda has well mentioned it is a non-invasive treatment for depression without side-effects.
Chris (@santosha)

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@lagiaconda

minajo,
I'm not in this group but with the enormous extended family I have (87 first cousins), I have several relatives who suffer from seizures, including a brother.
I am truly sorry your daughter has such challenges, as you must also have, parenting her. I deeply feel for you.
Have you asked your daughter's doctor(s) about TMS - Transcranial Magnetic Stimulation? Over the past four years, I've completed three cycles of TMS to treat severe depression. Several anti-depressants (I've tried 12-14) worked for a while but not permanently. TMS is noninvasive and it's brought me back to life three times! From my understanding, TMS was originally used to treat seizures and it was "discovered" that it took away patients' depression as well. The description you give of your daughter definitely sounds as though she's a very depressed girl. Some of her medications may help, but it seems as though taking too many medications may be harming her. I took Lamictal with Cymbalta to treat depression and it didn't cause me to be more depressed. In any event, talk with your daughter's physicians about TMS. Also research TMS to familiarize yourself with it. I wish you and your daughter the best life has to offer! May she heal and bring your family peace and relief!

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Thank you for your kind and supportive words! I doubt my daughter could do the TMS, first as her epileptologist wouldn't order and secondly, she pulls off leads just for EEG!
We might have turned corner with Lamictal, as she reached 250 mg she has seemed calmer, no seizures and now titrating to 300 with biweekly additional 25 mg, then the lab to see level.. as with Dilantin she needs to be on high end of " normal" range to prevent seizures..
Her g . i. system is still out of whack from the colonic interposition and have to be careful with drugs that cause constipation..
So her comorbid of autism/ epilepsy remain a huge challenge. she needs 24/7 supervision, care and i trust her team if 2:1 caregivers in licensed carehome.. they are very familiar with seizures as 3 of the 6 residents gave epilepsy
I just try to stay very involved but as a 76 year old mom with my issues its getting harder!
Such a great support group here, with my daughter being nonverbal it lets me get answers from " typical" users of drugs for epilepsy!. Thank you to all!!!

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@minajo

Thank you for your kind and supportive words! I doubt my daughter could do the TMS, first as her epileptologist wouldn't order and secondly, she pulls off leads just for EEG!
We might have turned corner with Lamictal, as she reached 250 mg she has seemed calmer, no seizures and now titrating to 300 with biweekly additional 25 mg, then the lab to see level.. as with Dilantin she needs to be on high end of " normal" range to prevent seizures..
Her g . i. system is still out of whack from the colonic interposition and have to be careful with drugs that cause constipation..
So her comorbid of autism/ epilepsy remain a huge challenge. she needs 24/7 supervision, care and i trust her team if 2:1 caregivers in licensed carehome.. they are very familiar with seizures as 3 of the 6 residents gave epilepsy
I just try to stay very involved but as a 76 year old mom with my issues its getting harder!
Such a great support group here, with my daughter being nonverbal it lets me get answers from " typical" users of drugs for epilepsy!. Thank you to all!!!

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Hi @minajo
That God gives you all the strength, wisdom and persistence you need at this time with the challenges of your daughter!
"All life will be explained later, if Our Lord did so, Our Lord knows so. What is up to us is gratitude. Whoever is grateful is always happy." - Valter Hugo Mãe from the book God in the Darkness.
My best wishes and vibrations to both of you!
Chris (@santosha)

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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 causedimpaction leading to hospitalization, then sub therapeutic on lamictal at 150,status epilepticus in trauma centerIsn'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 LamictalStill having g. i. issuesCare 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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@minajo

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 causedimpaction leading to hospitalization, then sub therapeutic on lamictal at 150,status epilepticus in trauma centerIsn'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 LamictalStill having g. i. issuesCare 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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@minajo

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 causedimpaction leading to hospitalization, then sub therapeutic on lamictal at 150,status epilepticus in trauma centerIsn'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 LamictalStill having g. i. issuesCare 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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Oops, I meant daughter not doctor

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@minajo

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 causedimpaction leading to hospitalization, then sub therapeutic on lamictal at 150,status epilepticus in trauma centerIsn'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 LamictalStill having g. i. issuesCare 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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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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@minajo

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 causedimpaction leading to hospitalization, then sub therapeutic on lamictal at 150,status epilepticus in trauma centerIsn'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 LamictalStill having g. i. issuesCare 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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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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