Cathy,

I'm on 3000mg/day or diamox. I started at 500, and ramped up slowly until I reached the dosage where I felt enough relief. I think a higher dose would make me feel better but the dr's say no due to side effects. They say that at least 2000mg is needed to have the desired effect, but I think everybody is different and for some people 500mg would do it.

I am not on Topamax or Lasix. I was originally on both diamox and lasix but being on the two together made my problems with metabolic acidosis worse. I'd guess if someone was on a mix of drugs the dosage of each would be lower, but maybe not.

I was on Diamox and had really bad side effects, I guess this is normal for a lot of people. Do the side effects go away and how long does it usually take.

I forgot to ask that my doctor was curious as to whether the people answering my survey and are on diamox do they also have a shunt and if so what kind - VP or LP? Believe it or not my doctor is asking for what helps others and if it is something we haven't tried for me, he is "willing to entertain the idea and possibly try it for me" He is an wonderful guy!
Cathy

I started 500mg twice per day in 2009. That made such a huge difference, but then things began to get worse again after about 1 yr. We changed it to 3X per day and it seems to be working pretty well. (I am only on diamox, no shunt)

I don't have a shunt either. I started on Diamox tablets 500 mg a day and worked all the way up to 2,750 mg a day (way too much for me, I was very sick). I'm now on the extended release caplets (MUCH BETTER!) and take 1000 - 1500 a day based on symptoms. I also have lasix, but I wasn't eating with that combo (just never hungry) so I tapered that off. It took months for my system to get into a groove with diamox, and I wish I'd had the caplets sooner - I get a longer relief period and fewer side effects.

I don't have a shunt.

Hi Cathy,

I was just put on Diamox this week and was started on 250 mg 2x a day, but I am also on Topomax 25 mg 2x a day and Atenolol 25 mg 1x a day along with a slew of other meds, but these three specifically for the PTC and to reduce the pressure. No shunt as I have just entered this world, and couldn't tell you if I have any side effects yet, but the Topomax did seem to make me a bit retarded for a bit, but I seem to have adjusted and we did reduce the dose too. Sorry that wasn't of much help!
UlaB

thanks to all of you. I went to my dr this week and he upped my diamox to 250 mg 3 times a day and I go back to him in 2 and a half weeks. We'll see how this goes. I told him about all of your comments and he wanted me to offer his thanks to you all. He did also succeed in gettig me an appointment with a neurologist for next Thursday 1/31 so I have my fingers crossed that the dr will be able to help me with these awful headaches that are really affecting my cognitive functions.

I started off at 3000 mg/day a year ago, and have been on that amount except for one month when the opth tried to take me down to 2000 mg/day and my sight/vision rapidly deteriorated. Thankfully I'm back to 3000 mg/day and my sight/vision is slowly improving.

Hello Cathy & Michelle,
I was put on Diamox 1000mg once a day. I usually take it before bed. I so not have a shunt or a stint. The side affects that I mostly had was the tingling of the hands and feet which my Neurologist said will happen and will go away with time, (which is did right before I had to stop taking it for my LP) It says that you can have some confusion and dizziness. I did have a little confusion from time to time but that also started to clear up right before I stopped taking it.
* Has anyone else noticed that once they started taking the Diamox that soda and carbonated beverages started tasting like grossness?? I can not drink any sodas or carbonated water anymore, which is fine with me because I am trying to stay away from those things for my better eating lifestyle, but I am still curious.

Hi Cathy,
I just restarted Diamox on 125mg, 3x a day. I use to be on 1000-1500 a day, but that was before I had a vp shunt.
Mallory

I don't have a shunt, I'm on diamox 500 twice a day and topamax 25 in the morning and 50 at night

I'm on 1500 mg/day. No shunts, but also no vision issues. Started at 500 mg/day about one year ago.
Best wishes to you.