Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Lowering dose of Lamotrgine without Dr approval...
Wed, 04/10/2019 - 09:04Topic: Medication Issues
Here's my cliff notes version and Questions??
I am on vacation visiting family in Brazil. I have two weeks remaining before my meds run out. I spoke with my sister, who is a Doctor, she put me in touch with a Pharmacist. He's been in the business for forty years. I asked him if he can get my Lamotrigine 300mg ER Tabs. He frowned and asked who in the world would prescribe such a dosage. When he found out I took two of those a day, he about fell over saying it was nearly criminal. He explained the largest dose they manufacture and sell in Brazil is 200mg, and that would only be one a day and in the very worst of cases. He told me to speak with another Dr friend, a Neurologist and an actual neurosurgeon. The same doctor it turns out who removed a tumor from both my aunt and uncle brains.
I met with him and he wondered why America loved to over-medicate patients, he had his suspicions regarding the dollar factor but stated he would need to know my whole history before coming to a conclusion. I explained the four doctors I have seen over six years and that each just changed the meds, added a med or increased the dose. Mind you I never had Tonic seizures UNTIL I began meds. It was only focal and Atonic and that was infrequently though yes I would have migraines. I was placed on E Meds when I had an Atonic seizure in a doctors office six years ago. I was diagnosed with epilepsy just after birth, but at age seven the meds were discontinued.
So my question is. Has anyone lowered their dosage on Lamotrigine without medical advice? How have you felt? How did you go about reducing your med dosage per day? What was the final outcome? Thanks in advance all.
Comments
Honestly, in worst case
Submitted by Misjoey101 on Sun, 2019-04-14 - 17:09
Honestly, in worst case scenario, I've lowered my meds before without my doctor. Unsually, if I have 11 pills, 7 days and I take 2 pills a day, then I'll usually take full-dose in the morning and break them in half at night.(generally, I have less nocturnal seizures and I'd rather have them in my bed than at work). Although, you can't get multiple bottles of 200mg. Just take 3 200mg tablets instead of 2 300mg tablets?
Please do not change a
Submitted by Anonymous on Wed, 2019-04-17 - 21:07
Please do not change a seizure medicine without talking to your own health care provider. The information from the people in Brazil was not accurate. The doses need to be tailored to each person and may vary according to other medicines they are on and how they respond to the medicine. Also a pharmacist, while knowledgeable about medicines, but does not know your medical history and you should not change medicines based on those opinions. Please contact your own doctor's office.
Contact your doc about this
Submitted by Amy Jo on Thu, 2019-04-11 - 11:07
Contact your doc about this asap. There might be some way to write a short script to get you past the timeframe that isn’t too expensive. We always figure this out before traveling and request & get multiple month scripts filled beforehand. Reducing lamotrigine should be done with your doc. Reducing it too quickly can be bad (cause more seizures). The last time my child nearly started weaning the schedule was 12 weeks from 225mg/day to 0. It’s a wean very slowly drug normally. Those people may think they know better but I don’t trust a non epilepsy neurologist like an epileptologist. I only trust our surgeon’s advice because his specialty is epilepsy (not why we see him) but then full follow up is with the epileptologist.Lamotrigine interacts with other epilepsy and non epilepsy medications, it’s not as simple as they say. E.g. birth control reduces effectiveness of lamotrigine or taking valproic acid means one should follow a different schedule. And my child did not see full control of seizures at 225mg/day, but couldn’t take a higher dose. With or without multiple drugs - some have been above max recommended dose without problems but note it was worth trying because some people with intractable seizures saw control at such levels in studies.Useful info if you cut and paste this into your browser: https://reference.medscape.com/drug/lamictal-lamotrigine-343012If you want better results, best chance is by seeing an epileptologist. Seeing an epileptologist is statistically associated with taking fewer meds and having better control and quality of life outcomes. That doesn’t mean every patient gets fabulous results, those docs deal with the harder cases after all.