its my daughter that is on this med as she is the one with PTC but she has not had alot of problems... maybe just alittle burning at urination but I try to make her drink alot of water...

Hi chelscole. I have not taken Topamax only Diomax but have been to hell and back with kidney infections from it.

2 years ago, when I was on a high dose, I got 18! kidney infections in one year. It was so bad that it would start with the pain and I would have blood in my urine in less than 3 hours.
I had an antibiotic at home at all times to stop the infection in its tracks.

Eventually, my neuro had to take me off it ,as my kidneys were in danger of permanent damage.
I know I drank oceans while taking Diamox but it didn't help. I do hope you can get a more satisfactory result.
All I can advise is to drink all day long, keep an eye on it and ...good luck! Cath

It's my daughter and she has been on 100 mg daily of topamax for over a year. She has not had any kidney troubles. She drinks sobe vitamin water every day and lots of water along with banana and yogurt. Hope this helps.

Cath, if I may ask--why was your dose reduced? I am on 300 mg of Topomax and do not feel as if it's helping me much; curious to see how you managed to get your medication reduced?

Chelscole, I am interested in this as well. I am on 300 mg of Topomax and this is a concern for me because I have a bladder condition already. I was just diagnosed in November, but Diamox isn't an option for me due to allergy to sulfa drugs.

I'm not on Topamax, but I've had constant Kidney Stones since being diagnosed! They come and go, and I'm eating very healthy, so I'm not sure why I'm getting them. I also had one Kidney infetion. I was on pain pills, antibiotics, and muscle relaxers for like two months...it's very annoying.

Brittney

wow guys thanks for all the info
well i got my test results back and
it's not an kidney infection

so i'm wondering if it could be kidney stones
my symptoms are: my back is killing me i cant lay down for more then 30 mins going to the bathroom alot more then usually and way more during the night i've been taking Advil since Monday and now my stomach it hurting due to that
i had an back x-ray earlier today so hopefully i will find out whats wrong on Monday or Tuesday

I had all those symptoms as well: Back pain, urination a lot at night, etc. I think it just comes with this condition. I've had back pain since I was diagnosed, but then again I was in a car acciddn right before I started displaying symptoms. But I had a pain in my middle to upper left side of my back for months! There was a little blood in my urine, when I went to the Doctor, but they never actually saw the kidney stones. I really think it's just part of this disorder. The heating pad will be your best friend :)

Hey guys,
I just posted on this a while back about how taking Diamox and Topamax together and how it is a no no. So just in case you are, please look back for that there is a med to take with that just in case. I haven't had any kidney stones but I just make sure to try to drink a lot of water. Like keep it in my hands at all time - but I run to the bathroom a lot too which is super annoying!
The joys of Topamax - Not!
Mandy :)

Yes, I drink tons of water.

I was on topamax very briefly a couple of years ago. I'm on Diamox now. I have calcium phosphate kidney stones, cloudy urine, back pain, nausea and stomach pain, other things that go with kidney stones. I have abnormal protein in my blood and csf. I also have had my kidney function reduced over 20% in the last 2 months.

The urologist thought the cause of all this was the acidosis, but my electrolytes and CO2 have tested just fine now for several months. When he saw my test results he backed off on the acidosis and now we don't know what's going on. I'm hoping they figure it out fast.

I've gone off the diamox in case it is that. I'll tell my neuro at my next appointment, lol. Now my head hurts, upper back, neck, shoulder much worse.. It didn't even occur to me the kidney stuff might be connected with IH., Hmmm

Well, just googled IH and it brought up Chiari. Chiari and/or csf pressure and kidney brought up a link to hypothyroidism. Hypothyroidism & psudotumor brought up a link with kidney disease. Hmmm

I was on this med for about a year. Recently I had an MRI and it showed some kind of cyst in my left kidney. The DR said it was nothing major and to follow up with a uriologist after I get my latest problem with my shunt taken care of...I wonder...