Hello
Im new to this forum, is anyone still posting information on here. I would love some feedback

Hi guys.

I'm new on here - just registered today! But I'm really glad I found this site.

I've had a shunt since I was 2 weeks, on my right hand side. I'm 26 now. I've had 1 revision since the first op. My neuro wanted to see if I was able to live without a shunt, but that didn't work. So they put one back in, on the left hand side. Not too long after that op, I started getting daily headaches. They first started to occur just in the afternoons (for some peculiar reason), and now I get headaches everyday, throughout the day. Sometimes they'll come & go, and sometimes they'll be there for the entire day.

A few years ago, I went to the neuro who was on the team that inserted my first shunt. He did an MRI, and concluded that there was nothing wrong with my shunt. But still, to this day, I experience daily headaches. One thing that he suggested, that bothers me, is that I should go see a psychologist. Do you guys think this might help?

I've tried the regular headache pills, but those have no effect. I'm currently on Trepiline, just to help me fall asleep. I would like to know if anyone has experienced daily headaches, and also, if you have found something to alleviate them.

do you have a fixed flow shunt or a programmable? do you know if you have a anti-siphon device (some shunts have them builtin, other times one can add then to the configuration). there are a variety of causes for headaches - our child gets them from over draining so traditionally such headaches show up later in the day and are improved by lying down (under draining can cause headaches also, then you may need to sleep very propped up which we've seen long ago). so the over draining can get worse so that headache is constant- adjusting the valve to a higher setting completely fixes it or if it only helps, we adjust it higher.

early on when we saw under draining (strata didn't go low enough either, very low pressure), our surgeon replaced the valve with built in anti siphon to a system without and our child did exceptionally well.. until her pressures started going up. so after adjusting her up, eventually we saw that didn't help so the first thing was to add an anti siphon back into her system, that helped for a while and we could adjust her up on that system for a while ok until eventually that wasn't enough so the system was upgraded to two valves in series and we kept adjusting her up until the top setting wasn't enough, got a stronger system and are going through the routine of adjusting that up... about to ask about a cmvp system.

most people do well just with adding an antisiphon if they are missing it or adjusting the valve setting (equivalent for fixed flow is replacing the valve with different vavle).

Hi there I am 43 years old now. I was diagnosed with hydrocephalus first when I was 11 then when I was 17. When I was 11 specialists put me on fluid reducing steroids for 6 months and told me to have a nice life. The headaches started getting really bad when I was 15 but when I would ask my family physician he would tell me to relax and not stress. The headaches were so bad I would often have nausea and vomiting to relieve some of the pressure. I finally managed to get my doctor to refer me to a specialist and then it was a race to get my first shunt inserted before I would suffer irreversible brain damage from over swollen ventricles. The doctor promised me that having a shunt would cure my intolerable headaches but he was wrong.