I’ve had my MAV under pretty good control for a while now on 100mg of Topmax a day. However the Topamax is hell on my kidneys and I’m in a constant battle trying to prevent stones from forming. I’ve got things down so that I can keep the stones away for the most part, but it’s not foolproof and getting a stone is, as I’m sure you can guess, amazingly unpleasant.
Has anyone had success switching from Topamax to using Botox injections, or using Boxtox injections in combination with a lower dosage of Topamax? My insurance just OKed Botox injections. They aren’t going to pay for them upfront but at least they would go towards my deductible in some form I believe. I’m not going to go off of the Topamax, but if the Botox has a shot of working I might give it a try and then see if I could come off the Topamax 6 months down the road or something.
I am on 200mg Topa. Not 100% but the VM is much better. I would like to ask how do you know that you have stones in your kidneys due to the Topa? What are the symptoms of having stones in your kidneys?
Well, if the stones STAY in your kidneys, which is not very likely, then you don’t really have any symptoms. However usually the stones, which for me have been as large as 6-8mm, travel from your kidneys to your bladder and then you pee them out. The symptom is excruciating waves pain that apparently rivals child birth, though I can’t say for sure being that I’m male and haven’t had children. It is the only thing that has ever caused me to spontaneously vomit from pain though! The first one I had sent me to the hospital. I’ve dealt with the ones since then with good pain-killers, but they are not fun. The pain usually starts in your lower-back where your kidneys are located and then migrates as the stone moves.
Amazingly enough, peeing them out is not the most painful part. It is actually only mildly uncomfortable compared to what comes before. It is the part where the stone travels from the kidney to the bladder that hurts like hell.
It is almost 100% that my stones are being caused by the Topmax, as it is a well known cause of kidney stones and I never had any until about 6-8 months after I started taking it. My urologist has the stones under much better control now with some citrate suppliments that break down the stones and keep them from forming or at least keep them small enough that they pass easier. That large one I passed was a monster.
wow dude now u have really scared me. i know i am supposed to drink a minimum of 3 litres of water daily whilst on the topamax to flush it all out of my system in a timely manner but i didnt know it cud end up being this bad with the stones in ur kidney issue. so far i dont feel any pain as i am sure majority of the people on this forum on topa dont either. but i wonder what wud happen to me in the future if the stones r continuing to form in my kidneys unnoticed due to the topa? at least in ur case its getting flushed out but u just have to bare with the pain? confused
I don’t think it is that common for tons of stones to just form In the kidney and stay there, but I am not an expert. I think usually stones form in the kidney and then come out into your system within a reasonable amount of time which is when you start feeling bad pain. A ton of stones sticking in the kidneys could eventually cause big problems if you had too many of them. An imaging screen of your kidneys could tell you if stones are forming there. Unless you have reason to believe you have stones you probably don’t. I don’t think this is the kind of thing that tends to stay silent, but it might be worth a discussion with your doc.
Most people on Topamax don’t have this issue. It is an infrequent, but I would not say rare, side effect. It is common enough that as soon as I told my doc I was on Topamax, he pegged it as the reason I was having the stones almost 100%.
I am currently for the most part avoiding stones. I have only had one very minor one since last August that was only mildly painful. My urologist put me on a cocktail of supplements that includes Vitamins B6 & D, Magnesium Citrate, something else I can’t remember, and a bunch of lemon juice daily + the requisite lots of water. DO NOT JUST DO THIS ON YOUR OWN as I’m not giving doctors advice here–just telling you what I’m doing. But this cocktail has been breaking up the stones at the source for the most part and keeping me from having the monster stones that I had over the past 2 years.
It is the only thing that has ever caused me to spontaneously vomit from pain though! The first one I had sent me to the hospital. I’ve dealt with the ones since then with good pain-killers, but they are not fun. The pain usually starts in your lower-back where your kidneys are located and then migrates as the stone moves.