Hi Everyone  I haven't posted since last spring, shortly after I was diagnosed. It has been a long 6 months...

I started on Diamox 500mg twice daily. I have never had severe headaches but instead was diagnosed due to papilledema and optic nerve damage. In March, at the time of my diagnosis, my opening CSF was 430. After several months on Diamox, and the resulting side effects (severe fatigue, depression, rashes over my legs, nausea, vomiting, diarrhea, numbness and tingling...you name it, I had it) it was found that my optic nerves had gotten worse and I was losing more of my vision. So I had a 2nd LP. The second one was a little better at 390, but still obviously high lol. So my medication was increased to 1500mg per day.

At my last neuro - opthamology appt my optic nerves were finally showing improvement, so I was extremely happy. However, last week I ended up in the ER with extreme back pain, vomiting, and diarrhea. I had the suspicion that I had gotten kidney stones in the past few months (related to the Diamox) but this pain was absolutely horrible. Turns out that I was suffering from a severe kidney infection and a blocked ureter due to the kidney stones. I had to be admitted to the hospital for IV antibiotics. After this, my neuro said that I can no longer take Diamox.

So, on Friday I started Lasix. I am concerned now because I have had a minor headache since Saturday (my IIH headaches are not severe, even at my highest pressures. They are more constant with a pain level around a 4-5). So right off the bat I don't think this medicine is working. Second is the constant thirst. I don't know if it is normal but I am drinking 4+ Liters of water per day and I cannot get rid of the dry mouth and constant thirst. I am also using the restroom every 20 minutes or so..probably because of the amt I am drinking.

So, I was hoping you guys could tell me your experiences. Lasix or Diamox?

I'm sorry to hear of your issues with the Diamox, since that medication is what is usually "the" med for IIH. It is used to help reduce the amount of spinal fluid produced. Lasix, on the other hand, works "after the fact."  It removes fluid from the body.  It is very common to have to pee often because of the Lasix, which can make you thirstier which makes you drink more which makes you pee more and on and on it goes.  The Lasix is not the best of the possible meds to use when you can only use one med for the IIH. You may end up being a candidate for surgery.  If your major issue is pap than you may want to research optic nerve fenestration as well as shunts.  

BTW, 390 is still rather high for an opening lp.  Your docs should really be more aggressively working on lowering your pressure and saving your vision.

My neuro is very concerned with my headaches and not so much with my optic nerves. My neuro opthamologist however is very concerned and has told my neuro that if my pressure does not reduce then I will need to visit a surgeon for the optic nerve fenestration (I think that is the correct term). My neuro said he isn't too concerned with "the numbers" and is instead worried about my headaches and whether I am getting them. This has led to a lot of frustration because I would have never seen anyone for my annoying headaches anyways because they aren't severe.

Thanks for the info on Lasix. It does make sense that urinating more will make me thirsty. I'll just keep plugging on until my next neuro-op appt next month. I'm sure this will result in yet another phone call from my neuro-op to my neuro. I am seen at Mayo Rochester so you would think that being such a renowned clinic they would be a little more aggressive. What do I know though... Sometimes I feel like their guinea pig haha.

And here I was getting ready to pack my snow shoes and go to Rottenchester myself (I used to drive for a trucking company there).  Mayo is supposed to be one of the best.  Maybe you have too many chief's and not enough indians.  Who is "leading your parade"?  The Neurologist, Ophthalmalogist or a Surgeon?

My neurologist is, unfortunately. He is a resident and seems very unsure of himself. It is frustrating to me. I really like my opthamologist but because IIH is considered a neurological condition and the optic nerve damage is resulting from the condition, everything gets passed along to my neurologist. The last time I had a "bad" appointment my opthamologist had to call the neurologist and explain how serious it was and that I needed to be seen again immediately. Because of him, I was seen in Rochester the next day for spinal tap.