Just a little tidbit of information regarding "normal pressure". I know there's an official range, but a lot of us have learned the hard way that these numbers are very subjective. I recently had my valve adjusted and am just amazed..

When I was initially diagnosed they were reluctant because my pressure was only 18-20. The only reason they gave me the diagnosis was because my symptoms completely disappeared once CSF was drained. My pressure has increased over the years, so they set my valve at 16 when changed last April. I did ok for several months, but started having low pressure headaches in September. They increased it to 18 the week of Christmas. For some reason my low pressure headaches got worse, so last week we went up to 20. I instantly felt better..it amazes me every time! I'm having some swooshing in my ears and a little more squeeze on my head so we'll see how it works out, but I couldn't function with the low pressure symptoms.

So basically, my old high pressure is now my new norm.. it's so crazy, but just another example of why this disease is so difficult to manage. And, another reason why we need to learn and trust our bodies..no one knows our bodies better than we do!

Julie, I agree with you completely!! Just another reason why we have to constantly be aware of how our body feels.
It took a year for my system to get used to the setting that my neurosurgeon determined was where my system responded the best during my lumbar drain test. Originally it was too low, not it's spot on. So glad we have the programmable valves to make that so much easier to do!!

me too, it's definitely easier than surgery!