I would assume that since Diamox is usually the first course of treatment for people diagnosed with IIH that it is the superior medication at reducing the pressure. In my personal experience and based on what I have read a lot of in this group, topamax is usually only introduced in addition to the diamox to FURTHER reduce pressure, or it replaces diamox only if the patient has issues with the first med but it rarely seems to be the go to medication which to me indicates that it is not as adequate as diamox.

Thank you Lauren, that makes sense. I can barely tolerate either one of them!

both are used off label to treat IIH - meaning that neither were designed to do the job. however only diamox has had any meaningful field test - you can look at this thread http://www.dailystrength.org/c/Psuedotumor-Cerebri/forum/19102303-diamox-feild-trial-paper

topamax hasnt had any major field studies so far as i have head,so scientifically there is no proof that it reduces CSF as well as diamox, but anecdotally it is thought to reduce CSF pressure. from my experience it is mostly considered to be the second drug of choice after diamox - but as it is also used to treat migraines i think neuros like to throw it into the pot quite happily.

from my personal experience, i started on topamax (when they though i had migraines) and was on it for 2 months and it did nothing for me, i had my first LP and my pressure was (still?) 38, then i got on the diamox as well and my pressure started to come down. i ended up on a combo of both - and i was happy to use topamax in a combo but i remember that i did little for me on its own.

however, it really does depend on how your body reacts to what drug, if you look at the diamox field trial, you will see that even the control group who were not on diamox had some success at reducing CSF pressure with a low sodium weight loss program. so i would take all the help that i can get with the drugs, but if your are not getting on with either of them there might be other things you can do to help, like weight loss or treating sleep apnea.

ahhhh just read your other post - the weight loss definitely doesn't apply lol - but we know you dont have to be over weight to have IIH, and you also dont have to be over weight to have sleep apnea.

You might also like to have a look at this list. It has a list of medical conditions associated with IIH. Things that if you maybe have or can control, might be linked to controlling susceptibility to IIH?...

http://www.iih.org.uk/images/medical-conditions.pdf

Thank you Keren for the links to the great resources!

:) no worries, one of the reasons i like it here so much is because when i first came there were so many great people who helped me out so much and had done so much research about IIH and were happy to share their wisdom with me. i am just trying to share to love too. :)

I was warned that there is a high possibility of getting kidney stones if you are on Topamax and Diamox at the same time. I was started with Diamox, increased up to 2000mg/day and then switched to Topamax, increased up to 200mg/day. Neither were effective for me but hopefully you have better luck than I did!

Diamox is the only one to date with any legitimate support for it's effectiveness in lowering CSF production to date (NORDIC study April 2014). Topamax is still theorized (would love to see a double blind clinical trial come out). Some argue in favour for a combo, some in favour for one or the other. Topamax has a higher quantity and more severe side effects than Diamox.

So many factors come into play when trying to decide the right medication for someone: chronic illnesses, life circumstances, sensitivities, etc.

My neuro has 3 other patients with IIH, and none of them have ever been on Diamox, they have all done well with Topamax. I was his first to start on Diamox. I really resisted Topamax, because of the increased likelihood of developing cognitive side effects--confusion, memory challenges, brain fog, etc. I am already struggling with those symptoms from IIH and am still trying to work as an RN, if even only for a few hours a day. But Diamox is not cutting it for me right now--started Topamax on Friday. We will see how it goes...wish me luck.

Hey Jazzy,

Check this out (found it on the Neuro site for the university hospital where the NS I am being referred to is):

http://www.cnsuwo.ca/ebn/downloads/cats/2010/CNS-EBN_cat-document_2010-08-AUG-31_topiramate-and-acetazolamide-were-equivalent-in-the-treatment-of-idiopathic-intracranial-hypertensio_A3ED3.pdf

A lit review of diamox and topamax -- only an open random study, evidence is lacking but possibly suggestive that they are equally effective.

Thank you Amanda and Taleema! Very interesting study Taleema. :)