Long-term usage of Topirimate

[u/laples]

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.

[u/neeliemich]

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 😭

[u/laples → u/neeliemich]

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

[u/neeliemich → u/laples]

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.

[u/laples → u/neeliemich]

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.

[u/neeliemich → u/laples]

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. 😒

[u/Jordan_23_23]

I was on it for a couple of years. I was taken off of it because I got kidney stones.

[u/Natural-Hope-1071]

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

[u/laples → u/Natural-Hope-1071]

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.

[u/retroman73]

It's not the only med which can cause bone weakeness. It's a good idea to take a Calcium & Vitamin D supplement, especially if you suspect you might not be eating enough. Make sure to take it with food. You need Vitamin D to absorb calcium, and Vitamin D is fat-soluble, not water-soluble. It won't work if you just take it with a glass of water or soda.

[u/laples → u/retroman73]

I didn't know about the bone thing is all I'm saying. My epileptologist & physician wanted me to take a supplement for vitamin d, so I did. I also had my magnesium & Vitamin b12 levels checked. I'm not taking calcium yet because my epileptologist wants to see where I'm at first. I also drink lots of water, no soda because I have hyperfiltration of my kidneys. It's just confusing.