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).

I too, have a shunt. I've had 7 revisions total. My neurosurgeon told me I have a tendency to build up scar tissue. Does anyone have pain in the back of their head behind their ear that goes down the neck? My shunt is on the rightside of my head in between ventricles 3 and 4. I developed hydrocephalus after birth that is why I have one. I'm also what you call shunt dependent. Without it, I die. I would appreciate any insight into this problem

Hi my name is Cheri and I have hydrocephalus. I also have an aneurysm. Anyway my Medtronic Straus shunt keeps adjusting itself back to 1. It was a 1.5. It went back to 1 on its own. Then my doctor put it to a 0.5 and said I'd like to see your ventricles a little smaller. Then told me to come back in August? Within a month I started getting low pressure headaches, went to the emergency room had a cat scan and the ns there said i'm overdraining, two of my ventricles are now slitlike, and he could barely see my right ventricle because they are soo small. At that time it had adjusted to a 1 again by itself. So he put it back to 1.5 again. And said it may be from being around Magnets? Geesh... What magnets? Anyway my surgeon is in Israel for a month and nobody else wants to touch me since someone else put the shunt in. So I'm stuck with a default shunt, overdrainage and no doctor for a month or so. Any suggestions? Thank You
Cheri

try vicodin, it helps me with mine.

Hello
My name is Donna Marie. I am from England so although all of your advice is great i have not actually heard of a lot of the pain relief and things that you are using.

I had a Brain Tumour when i was 9 years old in the back of my head! This luckily was a slow growing tumour so the doctors were able to do something before it was too late. Although it was left pretty late in actually realising thats what the problem was.
The brain tumour was located in the back of my neck and was the size of a lemon when first operated on. The tumour had squashed the cerebral fluid pipe and that is why i needed to have a shunt placed to take the place of.

Since then I have had 8 shunt replacements do to malfunction, blockage and infection. I am 25 years old now.
I have suffered from regular headaches ever since but lately i feel as though this has got worse and i am now getting them all the time. But it is not just that. i get a lot of sickness, dizzyness and feeling overly tired.
Annoying thing is that i know how it feels when there is something up with the shunt and i dont feel as though it is anywhere near as severe as that.

Also on my last shunt revision I had such bad pressure behind my eyes i found out i was having haemorrhages, And i developed slit venticle syndrome which now means the doctors cant tell by scans etc whether there is anything wrong. And they have to operate to find out.

I have posted this message just to see if there is anyone else out there who is having similar problems. Im scared obviously to go to the hospital to be checked as this usually ultimately ends up in operations which i dont want to risk unnecessarily.

If anyone can offer any advice or even just to tell me about your story i would really appreciate it. Ive never known anyone to have had a shunt and i know it feels awful when you feel like your the only one.

Thankyou
Donna

Hi,

I am also from England and don't know many pof the mdicines mentioned on here. I tend to take codine + parcetemol fort my headaches, but unfortunately this does not a;lways help.

I was mainly wondering if it's normal for people with shunts to suffer with frequent headaches? I've had a shunt since a baby and am niow 30, but simce my full-time work [I] have bad headaches at least fortnightly causing me to miss work. I was wondering if others with shunts find it affects their absence from school/work? I just feel i've been off work loads.

Hi,

I too am from england and have not heard of many of these medicines. I have a shunt (fitted as a baby) and take codine + paracetemol for my headaches, bbut this doesnt always help.

I am now 30 and working. But I have had a lot of time off work due to bad headaches and wondered if many other people with shunts find this with their work/school?

Hello! My name is Amanda and I am a 26 yo woman with Dandy Walker Syndrome and hydrocephalus. I have written a very long blog detailing my ordeal with DWS, hydro, and headaches. I haven't read all of the posts on this thread yet, but I have read a few and it sounds like many of you are going through a similar ordeal that I had to go through. I do not know if this will help you or not, but it is worth looking into. I suffered for over a decade needlessly. I am proud to say that I am now headache-free (except for occasional "normal" headaches)! I know most of these posts are very old and I hope that those people have since gotten help with their headaches, but if not, please read my blog. *mod edit* Please let me know if this was helpful to any of you and how your headaches are doing. My heart goes out to all of you! I have been where you are. Good luck to you all!

If you are having headaches every day, that could be caused by a few different things: 1) shunt setting is incorrect, for you, 2) you live in an area that has a lot of rain and low pressure systems going thru, 3) you could have a blockage somewhere along your shunt. 4) The valve; itself; may not be functioning properly.

I wear sunglasses, inside and out. That may or may not help deal with the brightness. You may be photosensitive. Several of those of us who deal with hydrocephalus tend to be photosensitive when our shunts are acting up.

Get a prescription from your doc so you can wear sunglasses in class. Otherwise you may be asked to take them off. Explain that the sunglasses are needed to protect your eyes from the bright lights. Also, if you are around CFL's (Compact Fluorescent Lights), or regular fluorescent lights, see if there is any way to get them switched out to LED lights. Those are way easier on those of us who have hydrocephalus and are photosensitive. It has to do with the refresh rate (also known as the flicker). Those of us with hydrocephalus can also be prone epileptic seizures. Good luck