I'm scheduled for another adjustment to my programmable shunt..this will be the 3rd since Christmas. They raised my pressure to 20/200 on Jan. 11th and I instantly felt better. I had my days, but basically felt human again. About 3 weeks ago the headaches started coming back. I saw my neuro-ophthalmologist last week and he thought it sounded like low pressure headaches..no signs of high pressure and I feel better laying down. The headaches all feel the same to me anymore, so I'm honestly at a loss. I originally thought the increased pressure made me susceptible to the storm fronts again, but my symptoms don't seem to get any better on sunny days. The headache gets worse the longer I'm up and only relief is laying down..low pressure seems to fit, so I called the neurosurgeon. I finally spoke with his office yesterday and he wants to LOWER my pressure ..basically take it back to where we started. Does this make sense to anyone? Linda, I know you're out there..any suggestions or insight?? I have an appointment on Friday and just hoping I can change their minds. Basically, they don't want to go any higher because I'm bordering the high pressure line..everyone has different normals and they're constantly changing..seriously, am I missing something?? My head is about to explode and it's not from the ICP [You must be registered and logged in to see this image.]

Appointment Update..they apparently had me set on highest setting for current valve, so took me back to 18/180. I was supposed to let them know immediately if symptoms got worse, but I'm avoiding them. The only 2 options we discussed were turning off the shunt/valve or replacing the current valve with something that has higher settings. I don't know about you, but I'm not looking forward to either. My eyes hurt so bad Saturday I would have plucked them out if I could do it without causing more pain, my face and hands are consistently tingling..still only relief is laying down. I'm at a loss.

Has anyone ever had shunt/valve shut off? How exactly does that work, and how did you feel?? I'm open to suggestions..honestly, I'm just ready to cry.

Ok, I'm so confused now I don't know if my pressure is high or low. I haven't been sleeping well and only finding relief when I'm laying at an angle. I'm having muscle spasms and tremors, my entire face is constantly tingling, my eyes are killing me, vision's blurry, ears are popping and ache, my neck is stiff, my upper back and shoulders are a mess by the end of the day, and mornings are a complete bear with pain and nausea. I'm not taking any medications that would be causing side effects, so I'm starting to freak out.

I have left a message for the neurosurgeon's nurse, but staff seems completely baffled. Last week I would have sworn it was low pressure because I felt better laying down. They lowered my pressure on Friday because they couldn't go any higher, and now my pain increases the longer I lay down. It's completely backwards!

I'm definitely in a misfit stage and feel completely alone. I can accept that no one here has any answers, but please tell me someone understands..I feel like I'm losing my mind!