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How to manage shunt headaches?

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Old 07-04-2009, 11:47 AM   #11
vini
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Default hi all

hi all

I have a CSF leak from head trauma, there is a condition called Orthostatic Headache, this can be caused by leaking or over draining from a shunt if your shunt is programmable your doctors maybe able to adjust the settings some meds also effect CSF production

there are many variables within the CSF system that shunts do not take into account exertion and posture are but two

due to the plight of a friend on another site, I have designed a more advanced shunt and sent it to

http://www.cerebrospinalfluidresearc...content/5/1/10 in the uk if you know any doctors doing research in this field, please PM me and I will froward the design to them , its free

best wishes
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Old 05-11-2010, 12:44 AM   #12
CNAJACLYN
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Default Shunt pain and scar tissue

Quote:
Originally Posted by Daughter Kristina View Post
Hello Everyone,
So very happy I found this forum.
I get headaches everyday.
They get so bad that I have to stay in bed in a dark room.
I have missed so many days of school because of this.
I just would like some advice on how to manage my pain.
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
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Old 05-12-2010, 12:33 PM   #13
peaches217
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hi I have an aneurysm and hydrocephalus both. I recently had a medtronic stratus valve shunt put in and it is overdraining right now. But I had horrible headaches like you guys too and saw a doctor named Dr Cherian from Cleveland Clinic Cleveland Ohio. You would have to be referred to him but he is great. he gave me 2 shots in the back of my head and my headaches are gone. It really didnt hurt that bad either. Just stung a littlebit. I feel wonderful except for my shunt keeps overdraining and adjusting itself. But the excruciating pain is gone. http://my.clevelandclinic.org/staff_...?doctorid=4127... Hope this will help. Also does anyone take Gabapentin and Lexapro together? I'm on Gabapentin and my doctor put me on Lexapro for my depression and panic attacks today. I'm just wondering if i can mix them. Thank You, Cheri
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Old 05-12-2010, 12:50 PM   #14
peaches217
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Default Medtronic Stratus Valve Shunt Malfunction

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
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Old 07-16-2010, 05:08 AM   #15
vivyv
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My name is vivyan * I am 12 years old I just got my first shunt replacement it was very scary I will admit it but I got threw I was having headaches really bad like your so I went and got my shunt replaced I was the first one to get the kind of shunt I have it was made my DR scalar and I have onley had it replaced once and that was not to long ago if u still have those head aches please go and get your shunt replaced I haven't had any headaches since I did u wil feal relly releved afterwards well hope this helped I really do

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Old 07-18-2010, 11:27 AM   #16
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Quote:
Originally Posted by vivyv View Post
My name is vivyan * I am 12 years old I just got my first shunt replacement it was very scary I will admit it but I got threw I was having headaches really bad like your so I went and got my shunt replaced I was the first one to get the kind of shunt I have it was made my DR scalar and I have onley had it replaced once and that was not to long ago if u still have those head aches please go and get your shunt replaced I haven't had any headaches since I did u wil feal relly releved afterwards well hope this helped I really do
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Old 07-19-2010, 10:10 PM   #17
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Default headaches

Quote:
Originally Posted by Daughter Kristina View Post
Hello Everyone,
So very happy I found this forum.
I get headaches everyday.
They get so bad that I have to stay in bed in a dark room.
I have missed so many days of school because of this.
I just would like some advice on how to manage my pain.
try vicodin, it helps me with mine.
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Old 11-17-2010, 05:15 PM   #18
lil_donna_7
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Unhappy Constant headaches

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
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Old 11-25-2010, 10:07 AM   #19
CharlyM
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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.
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Old 11-25-2010, 10:18 AM   #20
CharlyM
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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?
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