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How to manage shunt headaches?

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Unread 02-22-2009, 07:31 PM   #1
Army Wife
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Question How to manage shunt headaches?

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.
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Unread 02-28-2009, 05:23 PM   #2
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Hello,
I am sooo sorry to hear that your going through all this..WOW! I myself has a shunt. It has been ONLY 6 months that I have had this and my pressure problem is all good now but I have had MAJOR abdominal pain on and off since surgery- reading on here I have come across alot of people that has the SAME pain that I was having. But now MY problem is REALLY REALLY BAD CONSTANT HEADACHES. its going on the 6th day of this I first started getting the headaches in the beginning of February, I had a little bit of neck pain with it and a temp of 101. I ended up in the hospital for 5 days- them thinking that I had an infection-but ThankGod no. nothing ended up growing in my blood cultures and my temp with headaches went away- I was great for a week(the best actually I EVER felt since surgery) then I woke up one day last week and the same thing happened-temp with kinda slight neck pain and HORRIBLE headaches-it has NOT yet gone away and I have even went back to the hospital where at the time (of course) I didnt show any temp. they sent me home- I still do not have a temp but the headaches are still here...I just dont get it-I thought getting this surgery would of made me better? I am on here today to read other peoples shunt stories to see if anyone else has had headaches with theirs. thats when I came across yours- I am sorry that I DO NOT have an answer for you- but I am in the same boat my friend- My headaches are soooo bad that I too have to stay in bed ALL day It's NO way to live let me tell you how long have you had your headaches and if anyone lets you know PLEASE let me know-Thanks and hope you feel better*
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Unread 03-06-2009, 03:52 PM   #3
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Thank you so much for replying glittergirl.
I get headaches everyday and it gets so bad that I can't get out of bed.
I have missed so many days of school because I have been in and out of hospital most of my life.
I was born 3 months early and they put in a shunt right then.
I have over 3 dozen surgeries or more not so sure. And i'm only 17.
I just hope as I get older they will go away or get less and less.
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Unread 03-07-2009, 05:31 AM   #4
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Hello there,
May i ask why do you have a shunt?
Hydrocephalus? hemmorage? cyst?
I have a friend, who like you, was born very prematurely, she is fitted with a shunt due to hemmorage and hydrocephalus. She is weakened on her left side of her body due to this is where the bleed was on her brain when she was born.
She suffers from headaches alot and finds it very difficult concentrating in school, this fustrates her highly.

How long have you had headaches every day for?
&& when was your last revision?

Sorry about all the questions, this might just help into whats going on =)

Im 17 too, i have an large arachnoid cyst and hydrocephalus and i have a VA shunt fitted, as of 8 days ago. Before then i had a VP shunt. I suffer from headaches alot, but luckily not EVERY day.
When i have my headaches, i tend to just take paracetemol every 4 hours along with ibuprofen every 6 hours. There are times where no medicine even touches these headaches but then of course theres times when this resolves them.
Ive miss so much time form school too.
In september just gone, i was one day away from beginning the first day of college, my shunt had been working fine for 12 years until upto that day when i had an routine checkup and intercranial pressure was found. A DAY BEFORE COLLEGE BEGAN!! so since then ive been in and out of hospital, for operations, corrective operations, procedures, tests, appointments, post ops check ups etc, and then when im not in hospital i have bad days, shunt pains, stomach pain (before the VA shunt) since september i have had 4 acedemic subjects cut down to just one now, which takes up and hour and half 3 times a week, i will be lucky to get there twice a week, but all in all i am attending college about 30% of the time, if that. Its a pain isnt it!!

Yeh so theres my story, just for you to compare and adjust =)
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Unread 04-28-2009, 03:50 AM   #5
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Quote:
Originally Posted by glittergirl View Post
Hello,
I am sooo sorry to hear that your going through all this..WOW! I myself has a shunt. It has been ONLY 6 months that I have had this and my pressure problem is all good now but I have had MAJOR abdominal pain on and off since surgery- reading on here I have come across alot of people that has the SAME pain that I was having. But now MY problem is REALLY REALLY BAD CONSTANT HEADACHES. its going on the 6th day of this I first started getting the headaches in the beginning of February, I had a little bit of neck pain with it and a temp of 101. I ended up in the hospital for 5 days- them thinking that I had an infection-but ThankGod no. nothing ended up growing in my blood cultures and my temp with headaches went away- I was great for a week(the best actually I EVER felt since surgery) then I woke up one day last week and the same thing happened-temp with kinda slight neck pain and HORRIBLE headaches-it has NOT yet gone away and I have even went back to the hospital where at the time (of course) I didnt show any temp. they sent me home- I still do not have a temp but the headaches are still here...I just dont get it-I thought getting this surgery would of made me better? I am on here today to read other peoples shunt stories to see if anyone else has had headaches with theirs. thats when I came across yours- I am sorry that I DO NOT have an answer for you- but I am in the same boat my friend- My headaches are soooo bad that I too have to stay in bed ALL day It's NO way to live let me tell you how long have you had your headaches and if anyone lets you know PLEASE let me know-Thanks and hope you feel better*
Hi glittergirl,
Hope you're feeling better. I had shunt surgery in 2006. This is my first reply. I'm going to try and put my story in my profile tomorrow. My constration is really bad. I am just glad that Jesus loves me!
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Unread 04-30-2009, 01:25 PM   #6
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have you had your shunt checked?? my understanding was that the constant heaadaches may mean the shunt may be failing - what i know is last year when i started having problems my headaches were so bad i was unable to do anything - this was becasue the pressure was too high. when i had my lp shunt in i was still suffering - now i have a vp shunt and i guess it must be doing something cos my headaches arnt as bad.

jadiee - that seems so unfair that you got that close to college and needed surgery! ive had my vp shunt in for nearly 3months now and everytime i get a pain i think its failing - it really is no fun!
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Unread 05-03-2009, 09:46 AM   #7
TEC49
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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.
Hi,I'm TEC49 I don't know if you've had shunt surgery or not. My headaches havn't stopped and these are the pain medicines I've been on since surgery:GABAPENTIN 300MG,HYDROCODONE. THE PAIN CONTINUES WHEN ASKED 0-10, 10 i CAN'T REMEMBER NOT BEING IN PAIN, BUT IT S GOOD TO BE ALIVE.* GOD IS GOOD! BY THE STRIPS OF JESUS WE ARE HEELED. I PRAY AND HOPE THAT YOU FEEL BETTER.
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Unread 05-13-2009, 10:14 PM   #8
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Hi,
i wish my 12yr old daughter would get on here and read some of your stories. i reckon it will help her to see that she is not alone.

My daughter was born with dandy Walker Malformation and hence the hydrocephalus. She has a VP shunt inserted since 7mths old.
2006 the shunt broke from the neck down.

they reapired it but the first coil is still in her as they couldnt find it.

since then she has now got chronic pain and headaches everyday. in and out of hospital relaeased no temp but you can see she is in pain.

she also has to have her room in complete darkness when she gets really bad.

at the moment she is very quiet as the headche is about to reach its peak. she also suffers from sore ears no infection just ears really sore and they outside of them turn red to purple when pain is at it's peak.

She is homeschooled through the Northern HEalth School her in NZ for the last year now as she is noise intolerant bu they are trying to introduce her slowly back to school. she dont want to go and i dont think she should be forced either. What use think????

May be i could encourage her to read your guys stories so she can talk freely to those her no what shes going through.

Can you all help me to do this????

i would be grateful
Mother who dosent know how to help her child sometimes
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Unread 05-16-2009, 01:08 PM   #9
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Wow! I have had Hydrocephalus and a V.P. Shunt since 3 Months old! I am 21 now and very blessed to have only had one revision! I am sorry to hear some of you are having a Hard time adjusting to the Shunt! Honestly it has always effected me! I can't be out in the sun (or heat) like most people I end up getting real bad head aches and end up getting sick! I to battle head aches not quite as servere. I have head aches daily though which I control with Tyenol. It seems now though as I get older things bother me more. My neck hurts frequently and I have back problems which it seems to me most people with Shunts battle to. I am actually wondering now I am sensitive on that side of my head and can no longer sleep on my side. Does anyone have days where it hurts kinda just sore as if it was slept on! I have been having this pain 2 days now and I tend to freak out when I get things or pain that i've never before had. It seems now as I get older I have extreme tiredness all the time I've been battling two years now. Well regarding everything else I am thankful to have found a site where I can speak with other People with shunts and see if my issues are similar. I will certainly keep my ears open regarding these servere head aches. From what i understand it has something to do with the pressure. The shunt may be pumping to much or not enough. I have had these but not that bad since my shunt failed 12 years ago. My nuero surgeon has gone out of his way to explain the shunt and how it works and I hope my experiences can help you guys in Some way. Thank you for Listening and you are all in my Prayers

Katrina
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Unread 06-24-2009, 01:26 PM   #10
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Quote:
Originally Posted by Kwoznick View Post
Wow! I have had Hydrocephalus and a V.P. Shunt since 3 Months old! I am 21 now and very blessed to have only had one revision! I am sorry to hear some of you are having a Hard time adjusting to the Shunt! Honestly it has always effected me! I can't be out in the sun (or heat) like most people I end up getting real bad head aches and end up getting sick! I to battle head aches not quite as servere. I have head aches daily though which I control with Tyenol. It seems now though as I get older things bother me more. My neck hurts frequently and I have back problems which it seems to me most people with Shunts battle to. I am actually wondering now I am sensitive on that side of my head and can no longer sleep on my side. Does anyone have days where it hurts kinda just sore as if it was slept on! I have been having this pain 2 days now and I tend to freak out when I get things or pain that i've never before had. It seems now as I get older I have extreme tiredness all the time I've been battling two years now. Well regarding everything else I am thankful to have found a site where I can speak with other People with shunts and see if my issues are similar. I will certainly keep my ears open regarding these servere head aches. From what i understand it has something to do with the pressure. The shunt may be pumping to much or not enough. I have had these but not that bad since my shunt failed 12 years ago. My nuero surgeon has gone out of his way to explain the shunt and how it works and I hope my experiences can help you guys in Some way. Thank you for Listening and you are all in my Prayers

Katrina
I was diagnosed with hydro at 6 weeks, My story is kind of like your Katrina, I too have not had many surgeries. I had 2 at birth, One at 4 (my shunt failed) and at 12 I was going to get a tube lengthening but they just put a new shunt in. Now I have also experienced some of the same symptoms as you, I get small headaches, not really worth disrupting my day, but they are there. Lately it seems like I've been really tired. Considering that I am a college senior I don't know if its from just not sleeping enough or if it could be related to hydro. Now you said you have been feeling the same thing, has your neurosurgeon said that this is due to hydro, or could it be something else. Lately it seems that a lot of this has been coming on for the past few weeks, but I will say that its getting better. As for the shunt pain? Yes you may feel tenderness if you lay directly on your shunt, a nurse who specializes in hydro patients said its surface pain and does not mean that something is directly wrong with your shunt. The heat itself does not affect me much, I do feel slight pressure, but when I think about it, I've always been in the sun I guess I never though about how it would affect me, although it never really did. I do get the neck and back pain, this could be due to the tube that sort of runs down the back of your neck sometimes it doesn't move as much but when it does move it tends to bother other nerves in the area, I just recently had the neck and back pain, I just use a heating pad and it has gotten significantly better.

I haven't been to a neurosurgeon in years, which kind of scares me alittle, since all of this has just come up, although I do have an appointment in Aug. I guess it kind of freaks me out cause something could be wrong and I wouldn't know. However I haven't had any symptoms of a shunt malfunction. Although my shunt is pretty old some may say (going on 13 years), I guess I'm sort of scared of surgery nor do I have the time for it.
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