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Replies to "My nonverbal daughter, autism, epilepsy is titrating from 200( after 9 minutes seizure and one after..."
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!
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)
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
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.
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.
Hi I’ve been on lamotrogine, or as you can call it lamical. It has been a godsend to me ,I stared on 50ml a day. Obviously that didn’t work. Long st, now I take 125, in the morning and 125 in the evening. It’s about timing make sure it’s taken at the same time every day for each dose. Same as our brains work. It’s like a clock.
My nonverbal, autistic, epileptic daughter has been on Lamictal XR for about year and half
After her GI issues, sigmoidectomy she had very hard time with recovery, had few tonic clonic seizures, possibly from intestinal nerve triggering? But her behavior is hard to manage, from pain, we try not to do ER if possible as last year 4 different admissions, 49 days total is very traumatic so wondering why these blood levels are sent to Texas( from California) and take 7 days minimum
We need to see is she's sub, supra therapeutic and when she's manic needs to be stat..
She just switched from zonisamide and the titration took forever
But this lamictal if for bi polar doesn't seem to be working..
Any suggestions IF we can get Neuro to change?
She's also on Seroquel 175 daily and Buspar .
Really don't want to change med but she's not in good place right now😟
Thank you all!
Has any one taken Lamictal for seizures?
What side effects have you had if any.
My neurologist has put me on 25 mg a day for 14 days then increasing dosage over the next 6 weeks. I took Keppra and wound up min hospital. Couldn’t tolerate it. Reading side effects of Lamictal I am concerned.
@murphymarg59
I have not taken Lamictal however I've taken plenty of other seizure meds. It's important to understand these are potential side effects. The nocebo effect is where negative expectations about a treatment may lead to or worsen side effects.
The only expectation you should have is that it's going to help your seizures. Don't be concerned or stress about side effects that may never happen.
Take care,
Jake
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)