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Med change due to side effects

Posted by heatherae @heatherae, Sep 24, 2023

Hello! I have had seizures since around 2006. They were simple and the last one was in 2015 was complex. I am on the highest dose of lamotrigine possible. I started it in 2012. The whole time I have been on it I have bouts of double vision that last for at least 1 hour. I used to eat carbs with my med because I figured out it would keep it from happening a lot. I was diagnosed with Celiac about 2 years ago so I had to stop. The double vision has intensified. I talked to my doctor. My only option is to change meds but I am nervous. My medicine had stopped my seizures. Every med I get on gives me the most severe side effects. Right now I feel like I am backed into a corner. I can't have the double vision because I have to drive my granddaughter to school but I can't have seizures either. Has anyone else had to make that decision?

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Leonard | @jakedduck1 | Sep 24, 2023

@heatherae
Yes, many times over 56 years.
The last time was the best decision I ever made. My seizures at last stopped, until I missed my meds one day.
If you switch, whether to brand or generic stay with the same manufacturer. Pharmacies will usually accommodate this request. I believe the that my seizures stopped because I used a time-release formulation.
Side effects are often reduced with time-released medications.
Did your double start soon after you took your dose?
Take care & good luck,
Jake

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1 reply
heatherae | @heatherae | Sep 24, 2023
In reply to @jakedduck1 "@heatherae Yes, many times over 56 years. The last time was the best decision I ever..." + (show)
@jakedduck1

@heatherae
Yes, many times over 56 years.
The last time was the best decision I ever made. My seizures at last stopped, until I missed my meds one day.
If you switch, whether to brand or generic stay with the same manufacturer. Pharmacies will usually accommodate this request. I believe the that my seizures stopped because I used a time-release formulation.
Side effects are often reduced with time-released medications.
Did your double start soon after you took your dose?
Take care & good luck,
Jake

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Thank you for responding! My double vision started within a few weeks during the increasing dosage. At the time we were moving to a new state and in the process of finding a new doctor for me so I just kept taking it. I tried kepra before and had intense rage. Carbotral caused hallucinations,vomiting, and it almost killed me. Depakote was severe shaking, weight gain, and drowsiness. None of them worked except the lamotrigine but double vision at anytime isn't doable anymore. Since it is extended release it can be really frustrating. I just don't want to have seizures again either. Thank you for listening!

REPLY
Chris Gautier OR Santosha | @santosha | Sep 25, 2023

Hi @heatherae
I also had to make such decisions in the past because of the severe side effects I got with some AEDs I have tried.
There are studies showing a close relationship between the gut and brain, especially in those with Celiac disease. Since 2022 I have been 100% gluten-free and this has reduced my seizures by 60%. Last week, I learned that I might have gluten sensibility.
All my best to you!!!
Chris (Santosha)

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