I'm here posting on behalf of a friend with IIH and a VP shunt. It was installed last October after years of suffering from high CSF pressure due to birth control she was taking. After the shunt was installed, it was set to a low level and she was basically told to see how it went and it could be adjusted as needed. For months, she suffered from low pressure headaches, despite the number of times the shunt was adjusted up. Back in January, she went back on her birth control for other health reasons, which caused her pressure to go up again. Now she suffers pressure headaches again, located right around the shunt. However, if she stops taking the birth control for a certain amount of time (last time it was two days), the low pressure headaches came back. Her shunt is currently set to 150, which it was set at before she started doing the birth control again as the neurosurgeon attempted to deal with the low pressure headaches (he even said back then that 150 is on the high end). She's asked about the possibility of lowering her shunt setting down to like 145 or 140, and has been told that there is too great a risk of ventricle collapse. I was just wondering if anyone has any ideas or has had any similar experiences that might be helpful for her (she'd be posting here herself, but her pressure headaches have been very bad this week, so I'm trying to help her out. She's been trying some water pills her doctor gave her in hopes that they'll bring the pressure down a little, but so far no luck.)
Thanks for reading!