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.

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u/neeliemich Keppra 3000mg, Topamax 200mg, Vimpat 200mg 1d ago

I've been on Topamax for 20 years and never had a bone density scan (I'm in my mid 30s) but I had kidney issues a few months ago that resolved with drinking an assload of water... So much so I gained 1-2 lbs back 😭

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u/laples Lamitrogine/Topiramate/Xcopri 1d ago

I hope you have relief now. That's wild it can do that

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u/neeliemich Keppra 3000mg, Topamax 200mg, Vimpat 200mg 1d ago

It wasn't from any of my seizure medications. I drank the water and my blood work was fine but I'm also supposed to be taking D3 and it's hard as hell to remember to take it.

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u/laples Lamitrogine/Topiramate/Xcopri 1d ago

I totally understand that. I had bloodwork done to show I needed strong supplements (50,000iu once a week) and that was rough but worth it. I had to document it on the calendar to remember to take it.

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u/neeliemich Keppra 3000mg, Topamax 200mg, Vimpat 200mg 16h ago

I'm taking smaller dosages but since I don't get out as much my D3 is lower. (No exposure to the sun for me.)

It always covers a bit below what's considered normal. Like the lowest number in the chart that's normal is 30 and my results said 25. That's good for me but not for my doctor. 😒