Hi Everyone!!!! My name is Joleen and I am from South Africa. I am 27 years old and was diagnosed with IIH 5 Years ago when not so many GP's could give me answers needless to say the IIH progressed to the point of Pappillodeoma. I almost lost my sight but by the grace of god and Diamox my eyesight was saved.

My vision isnt 20/20 but its enough to live a normal life or so i think. Anyways after great progress on Diamox my neuro decided to discontinue my dose since my eyesight had returned. 

During a recent trip to my gynae( I also have PCOS) he decided to put me back onto Diamox!!! possibly for the diuretic / weightloss effect to kick in. Do keep in mind this is 5 years later. 

Any advice ? Possible reasons ? What are your thoughts ? 

Regards 
Joleen

Hi Joleen, and, welcome to the forum.  
We have found that having IIH is for life.  It can and does go into remission, but a watchful eye has to be maintained to keep the symptoms in check.  I suspect that your OB/GYN is thinking that it may be becoming an issue again.  The Diamox should take care of your pressure.  Has an LP been suggested?  Having a puncture is really the only way of knowing what your system is doing.

So glad they caught the problem in time and saved your vision!

Hi Wylee 

Thank you for the response. Upon initial diagnosis i had numerous LP's done to alleviate the pressure and get an accurate diagnosis. My OB/GYN has suggested that I have another LP to see if there has been any change in my condition since then. The though of another LP scares the daylights out of me!!!! I wish there was a quick fix for all this :( The PCOS adds to my list of complications. Any suggestions or weight loss tips ? Im trying desperately to shed some extra pounds.

While losing weight is always a healthy idea, with IIH it's not a guarantee.  I have had fantastic luck when I cut out sugars, heavily processed foods, sodas and juices, even dairy.  I'm doing the Fast Metabolism Diet (by Hailey Pomeroy).  Try to eat natural foods.  That will help.

I have had my lp's done under CT fluoroscope guidance and it makes it so much better.  My Radiologist insists that her patients lay flat for 45-60 minutes post tap to reduce the chance of developing a leak and low pressure headache.  Lastly, I always had to stop taking the Diamox a few days before the tap, to get a true reading.  Just as soon as I hit the recovery room I would take a double dose and then get back onto my usual routine to help keep the lower pressure longer.

As you read around this site, you'll see that your journey with IIH is fairly common.  Know that you are not alone.  We are here to help.