I had a second LP today because my vision was getting worse and headaches where increasing over the last month or so. My first LP was march of this year with an opening pressure of 50 and 20 cc fluid drained. Today opening pressure was 49 and 20 cc fluid drained. I am a bit concerned that the pressure is still that high, while I am taking diamox and lasik. And this LP was not as smooth as the first, I felt most of the procedure as my bp was really low and they reduced the amt of iv drugs, it was very uncomfortable. I was given a low dose of norco once I got to the room to lay for 3 hrs. The pain is still very bad. The only time I don't feel any pain is laying still while on my side. I am so confused with the ins and outs of iih and not a lot of people understand. I just wish it would all stop.
thanks for listening    

I'm so sorry Kim, for what you are going through.  it sounds miserable.  are they thinking about doing a shunt?  with your pressure so high and it affecting your vision and not much change with the meds, it seems like that might be the next step.

Ugh, I'm sorry..that sounds awful! I had a couple bad LP experiences, but can't imagine not being able to be fully medicated. I wonder if your blood pressure is higher because of the pain. I know it contributes to mine when IIH is acting up. Do you get any relief after they do the LP? It doesn't seem like they drain near enough. I usually had a closing pressure in the mid-teens or single digits, of course I think my pressure was only over 50 once.

A shunt seems like the next logical step. I was taking Diamox and Lasix before my LP shunt 20 years ago, but they weren't helping me at that point either. VP shunt wasn't an option at that time, but I got one a couple years ago and it seems to work much better.

I would definitely ask for a plan, if they haven't discussed anything with you yet.

Keep us posted!