Topomax

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Faith in Christ

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Hello
I just found this forum and thought this would be a good place to ask a question about Topomax and Kidney Stones. I was taking 300mg of Topomax and 400mg of lamictal perday for Grand Mal siezures I passed a small kidney stone almost 20 months ago. The doctors made me ween off the Topomax (reluctantly) over the last 5 months , citing that I would destroy my kidney.
Since I weened down to 25-50mg perday of Topomax I started having siezures again. The reports say there is a 1% chance of stones and the 300mg of topomax with Lamictal was the only meds that worked well together that kept me siezure free the longest. Now the doc wants me to start taking vimpat?
From what I read here vimpat is not so good for many reasons. So I am thinking of pushing the issue with Topomax and increasing the dose..............:eek:

BTW Lamictal is good no side effects :clap:
 
Welcome FIC

Glad you found us. Sorry you had to experience a kidney stone just to try another AED. I have tried Vimpat & topomax but those times are such a haze I can't remember which was which, just that they didn't work for me.

Despite what you've read about Vimpat remember that all effects these meds have, good & bad differ from person to person. It just might be one that works for you & you don't want to miss it. The only way to know is to try it.

And on the medication merry-go round we go.
 
Hi FIC,

The AEDs affect everyone differently. So for instance, you might have no problems with Lamictal, but someone else will have intolerable side effects while on it. Same goes with Vimpat -- it might be lousy for others but turn out to be perfect for you. There's no way to predict. I understand you wanting to go back on the Topomax -- better the devil you know, right? -- but if you've already had one kidney stone on it, I think it's worth giving Vimpat a chance. And there are other meds out there to try. Definitely discuss with your doctor what your options are if the Vimpat doesn't work out.

Best,
Nakamova
 
I guess one of the questions I have is ........has anyone on this forum or that you have heard of had any stones from Topomax? The only drug I ever had any side affect from is Keppra , that turned me into a raging maniac(kep-rage). Otherwise I have no side affects from any other meds. I also don't know if the stone was there before I started taking Topomax? :ponder:
 
Thanks for the link.

IN the case study they did it was not very extensive and not long term.
Unfortunately we have no real patients who have been on it for a long time that can verify these kind of problems. If the Topomax can prevent the seizures and the stones are every once in a while(almost 2 years now) then I would have to choose the stones over the seizures. (if the topomax is really causing the stones?) I am going to have my kidneys scanned again just to make certain.
 
Robin posted the link to this site awhile back:
http://www.askapatient.com/
Once you get the search results, use the "find on this page" utility to find any info on "kidney" (Look under edit in the toolbar, then click on "find on this page")

This site has PATIENTS list their side effects with different drugs - not the drug companies or the FDA.
 
If you decide to go back on the Topomax, you might want to ask your doctor about taking a magnesium citrate supplement (which can help prevent kidney stones).
 
I've been on Topomax for 10 years now and have not experienced any kidney stones (yet), although it is stated as a side effect in the handout from the pharmacist.

From http://www.drugs.com/topamax.html

Drink plenty of liquids while you are taking Topamax. This will lower your risk of having kidney stones or an electrolyte imbalance. Call your doctor if you have ongoing vomiting or diarrhea. You can easily become dehydrated while taking this medication.
Click to expand...
 
I had kidney stones from topamax, changed to keppra. Kidney stones that turned to a very large bladder stone that had to be removed. That was a nightmare, drink as much water as you can.
 
Oh, yeah. I forgot about the thirst. Thanks, mike. I'm sure it's related to the kidney somehow. I was sooooo thirsty, I drank about 5x my normal intake. And peed a lot. I didn't get stones like Mike, though.
 
Its so important to drink water! Thrist is the last indicator that your body is dehydrated. I wonder how dehydration effects epilepsy? I know that after I seize I have a powerfull thrist! The first thing I want is a drink.
 
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