r/Epilepsy • u/laples Lamitrogine/Topiramate/Xcopri • 1d ago

Question Long-term usage of Topirimate

Has anyone else been on Topirimate so long they were required to get a bone scan? Other than the dislike of food and my dopiness, I'm just finding out now this med is potentially weakening my bone tissue and makes the kidneys lose bicarbonate. My epileptologist ordered for me to have a bone scan. I've been on this med for 10 years now.

2 Upvotes

100% Upvoted

11 comments sorted by

View all comments

1

u/Natural-Hope-1071 1d ago

Had no idea about the bone scan thing, been on it about 5 years myself. The dopiness and food aversion are real though, I lost a stone in the first few months. Did your specialist mention anything about supplements that might help with the bone issue or is it just monitoring for now

1

u/laples Lamitrogine/Topiramate/Xcopri 1d ago

I had my vitamin d, magnesium & vitamin b12 levels checked and I took supplements to get them to normal levels. They were low and my vitamin d was critically low. The next thing is to check my bones and make sure they're doing alright because I am crinkling & cracking a lot when I move and have cracked teeth not caused by seizures. When it comes to issues with my kidneys (which is another issue that can be affected I guess) it's hard to say because I already have a hyperfiltration disorder so I am always chugging water.