I am having on and off headaches in the morning getting up from bed.
They are worse sitting up than lying down. I have a programmable shunt. These last a few days to a week then disappear then come back. My scans are always normal my last one was in November.

Hi!

The positions you describe (head upright is bad, lying down is good) can indicate over draining. The headache is hypotensive, low pressure. Generally over draining bothers people more at the end of the day. My daughter can be bothered if she gets up too early or over did it the previous day, she doesn't seem to have any reserve built up. This morning presentation causes confusion with some less experienced surgeons. Imaging does not show over draining unless they note your ventricles becoming slit like. First thing to have them check is if your valve is at the correct setting, some failed valves can lose their settings or exposure to a magnetic field could adversely affect your system. You can request having your shunt reset to a higher setting (this does not always work if the higher setting is too much or if you really need an ASD). We have the valve adjusted up every so often. If you don't have an antisiphon device, you may benefit from having that added to your shunt system (some valves have one built in). Talk to your surgeon's office. Let people know how things turn out.

Hey Tom,
In 2013 I had a revision, the previous shunt was working but then fractured, hence the revision. They placed a programmable valve. Since then I've been having huge problems. The mornings are just awful, sitting up I have a headache for this next 2hrs minimum and then the same when laying down. I haven't had a headache free day since the revision. The pressure I feel behind my eyes is massive, like my eyes are going to pop out of my skull. I've been back to see the NS, he has adjusted my pressures to alleviate the pressure behind my eyes but this has not had the desired effect. I've had scans and been told all is OK, But my headaches tell me different. In my view this can't be normal, surely. Now the NS are saying its just me. I have a neurologist now telling me its migraines, so he's giving me botox injections, but they are not having the desired effect either. I go back to see him again tomorrow for another round of injections, so lets see what he has to say.

Please do keep us informed on how you get on. It will be interesting to compare.
Merl1n