Hello!

Quick "need your opinion" question..

I've had PTC/IIH about two years, one year with treatment and tests.

As far as my meds and LP process has gone.. 

original OP of 31 (no meds)
bit later 500mg diamox OP 35
1000mg diamox 34
2000mg diamox 32
3000mg diamox 31


... now she says "did you take your medicine the morning of the test? We should re-check and make sure you take your medicine the morning of the test.

Is this really necessary?? I have had 3000mg of diamox in my system for a while. Would not taking it the morning on a tap really skew the OP that much? Is it worth going through another tap and prolonging the side effects of Diamox?

looks to me like the Diamox is not doing S%$#

Actually I have been told by my doctors that Diamox is not the kind of medicine that "builds up in your system" over time, so basically once a dose has been taken and processed through your system, its effects are gone until you take the next dose.  Especially if you're taking the tablets vs. the time release capsules.  So what she said does kinda make sense ... if you forgot your meds that morning, then the effects of your meds might not show up in your LP results.

However ... that being said, it looks like you've had a bunch of LPs now and you probably weren't off meds for all of those?  It doesn't seem like your pressure has fluctuated much over time.  LP is such an invasive procedure, very tough for me to recover from ... I can definitely understand your reluctance to do another one.  I would talk to her about it, tell her you really don't feel like the Diamox is doing its job for you and you're having a lot of side effects.  See if she might be willing to try changing meds, or another approach, without an additional LP given that you've had so little change with Diamox over all this time.  Good luck hun!!

If they really want to measure the results of using Diamox, a lumbar drain test would give them that info.  They would get real time measurements. of before taking the meds, during, immediately after , and hour after, two hours after.  It may be that you are not taking the medication in a timely manner.   Diamox does require being taken once every 8 hours.  You have to be really dedicated to do that.  Perhaps your doc wants to see just what the result would be if you did take the pills exactly on time??