Lamictal side effects

Thank you for your sincere interest in my issues!
I have asked for that but neuro said he didn't have any evidence to support..
We are changing epileptologist in September as she has not listened to my concerns.. perhaps new one will tho she is a neurologist but after last two years with epileptologist and no help i asked for new..
Lisa was on Zonisamide, you might remember Chris, and steadily gained weight, took months for dr to change them she had severe impaction, no such issues on Dilantin..
Very strange a ER dr said her 9 minute seizure last year before volvulus diagnosed, probably triggered by nerves in intestines.. she's so complicated, also had a qt prolongation in hospital, sometimes epilepsy misdiagnosed because of that!
So hard going from Zonisamide to lamictal i just have to keep her on it toll i know gi issues resolved..
What other tests help find correct AED ? Gonna have to push for genotyping i know!
Have a lovely Easter weekend
Thanks so much Maureen, Lisa's mom

@minajo
Hi Lisa, once again
I just retrieved a post from Kerry (@keeg1010) from 2021. Her son has cerebral palsy, autism and had recently developed seizures at that time.
https://connect.mayoclinic.org/discussion/seizureshow-to-dose-cbdmedical-marijuana/?pg=7#comment-632701
I have been in contact with Kerry since then, and she has become a friend. Her son's medication was switched to Epidiolex and he stayed 2 years seizure-free. Perhaps you could speak to her directly? She is a very nice person. I hope she pops in!
Chris (@santosha)

Hello all.. my nonverbal daughter who had sigmoidectomy 6 months ago is slowly recuperating but had a high Lamotrigine level end of December while in hospital being treated for post op ileus and went from 300 mg XR Lamictal to 250 but after discharge her epileptologist reduced to 200mg? No reason given
Daughter had more issues, then her behavior escalated, stopped taking meds until finally her Lamictal given at 8p..
Then a 5 minute seizure end of march so dose upped to 300 again but level toxic so now on 275 but still drug given at 8p and she has sleepless nights, refuses to go to bedroom, naps on chair..
Is the evening dosing causing?
Anyone know if genotyping would help with determining best seizure meds?
She's a profound autistic and being nonverbal very ,very challenging!
Thanks
Lisa's mom,

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 lifelessNo 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 soAlso takes Seroquel and Buspar, has for yearsAfter 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 !

I am having GI issues too. My origional does of lamotrigine was 100mg twice daily IR. In jaunary my neurologist began reducing the dose because I was having constipation. He said it was not an adverse effect but I did research and all AEDs can cause this. Now I am on lamotrigine 100mg ER daily. My constipation has improved. I have had to alter my diet. I am still working on this. I take Metamucil docusate. I like diet soda but my GI symptoms get worse so I am drinking green tea and lemon ginger tea. You seem to have a very tough situation and I am so sorry. I have ptsd. I have had life issues with anxiety and depression linked to unresolved trauma that I needed to adress. I had a craniotomy in May 2014 to remove abcess left temporal lobe from bacterial meningitis of my brain. I take also escitalopram 5mg and melatonin 10mg for sleep. I do not like polypharmacy in any form. I hope your situation with your daughter improves.

Hello @kb2014
Many AEDs can cause constipation, and it's really uncomfortable to deal with. While I didn't experience this particular side effect with Lamictal, I definitely had it with other AEDs and with my current one.
Have you considered trying golden flaxseed flour? I've been using it daily by adding a teaspoon to my yogurt, and it's made a significant difference for me. It might be worth giving it a shot!
Have a nice weekend!
Chris

Thank you Chris. I take a fiber supplement. I just added a probiotic supplement. I have to make sure I drink plenty of water. Green tea and lemon ginger tea help. I also take docusate. My symptoms are better. My appointment with a gastroenteroligist is in November. I continue to work on dietary issues. Something else I noticed is I need to walk at least 3000 steps daily. In NM with the heat recently it has become a challenge.

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 lifelessNo 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 soAlso takes Seroquel and Buspar, has for yearsAfter 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 !

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 lifelessNo 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 soAlso takes Seroquel and Buspar, has for yearsAfter 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 !

Well learning not to act or react to everything and everybody. CBT. Cognitive behavior therapy. Becoming and being aware of my agency. My power to make my own decisions choose my thoughts etc. Learning about codependency and narcissism. Since I had a craniotomy to remove abcess left temporal lobe I learned about neuroplasticity and how this surgery changed me. Deep breathing. Living a simpler quieter life. Learning to say no.