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Lamictal xr issues
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,
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Hi, @minajo - that is indeed very challenging to work with your profound autistic and nonverbal daughter on her treatment.
Since you were talking about issues with lamotrigine (Lamictal XR), I'm providing some Mayo Clinic information on this medication that may be helpful:
-Lamotrigine (oral route)
https://www.mayoclinic.org/drugs-supplements/lamotrigine-oral-route/description/drg-20067449
I'd also like to invite into this conversation @jakedduck1 @santosha @bruizersmom @21amy @lilomen1 who may have some input for you on whether the evening dosing of this medication may be leading to sleepless nights, refusing to go to bedroom and napping on a chair. They also may know whether genotyping could be helpful in determining the best seizure meds for your daughter.
What does your daughter's neurologist or epileptologist think about the medication challenges she's had? What does he or she think about whether genotyping might be helpful?
@lisalucier , thank you for introducing me to this chat.
@minajo
Hi Lisa,
I have taken Lamictal for 4 months and also had insomnia with this medication, besides shin rashes (they disappeared after some weeks of usage). Lamictal could control my seizures well, and the side effects were very few, but I could not sleep. I was a nightmare! So my doctor at that time switched to another AED.
When reading your post, I remembered I did pharmacogenetic for AEDs after having tried 5 different AEDs and not having success, either because they could not control my seizures or because the side effects were intolerable. At that time, I was being treated by a neurologist and not by an epileptologist. The neurologist did not take this exam much into his consideration. Perhaps, because I was the one who asked him to prescribe this exam and not the other way around (doctor's ego). Besides that, this exam was or still is not yet widely available here in Brazil (my blood samples had to be sent to Spain, if I remember well), and it did not consider all AEDs available on the market. But, the situation might be different in the US.
With this post, you reminded me to show this exam, which I had totally forgotten about, to my current doctor. Thank you so much! The exam was not valuable at the time I took it because of the reasons I have pointed out above, but it might be helpful today.
God bless you and your daughter!
Chris (@santosha)
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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)
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
Posted a reply to your earlier posting.. thanks
I have been on lamotrigine since February 2021. 200mg daily. Early this year my GI symptoms which have existed since I was prescribed anti seizure meds in 2014 got intolerable. Gas pain bloating constipation diarrhea. The research says these symptoms can be attributed to anti seizure meds. My neurologist was skeptical my symptoms were connected. Actually said no. Go see my PCP - I probably have UTI. However he did change and decrease my dose to generic lamotrigine ER 100mg daily. I am working on my diet. Making changes slowly - IBS diet. Urinalysis negative. I am seizure free and feel better on the lower dose. My GI symptoms are improving. Not sure if my post helps except to say the patient must be his or her advocate. Prescription meds can have many side effects. Your daughter cannot verbalize for herself and I am sorry you are enduring this. Since the change in dosage and drug form I have felt more fatigue and need naps.