How to manage shunt headaches?
 

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*

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 =)

First timer
 

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!

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!

Manage headaches
 

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.

My daughter
 

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

Brand New to the Site!!
 

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.

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

Shunt pain and scar tissue
 

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 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

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

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

headaches
 

try vicodin, it helps me with mine.

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

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?

alternative medicine that works for chronic headaches
 

I am 32 years old who was born 2/1/2 months premature with cerebral palsy,lazy eye, and hydrocephalus. After 6 shunt revisions I have chronic headaches. It is more of a pressure headache around the shunt which is on the right side of the head. I use a ice pack coverd in a towel and lay it on my head for about 15 minutes to half hour to get rid of the headache. Accupressure,cranial sacral therapy also helps with the headaches. Before going to a cranial sacral therapist I had gone to my neurologist who couldn't figure out the reason for the pressure in my head. The Dr. had done a CAT-SCAN and the shunt had no abnormalities. He then told me that he wanted to do surgery and put in a calibrated shunt to control the drainage to prevent headaches. At the time I didn't want to go through any more surgeries so I opted out. I then went to a cranial sacral therapist and the chronic headaches were gone immediately. If I sleep on my right side of my head I have throbbing heaches that I releive with an ice pack daily.

I hope this will help someone!
 

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!

Hi Katrina, I've had hydrocephalus since I was 2 months old and am now 26. I've had about 4 revisions in my life. The last was last week. I had been having similar symptoms that you are describing. After a head ct and shunt flow study they determined my shunt was still working, but not to its full capacity. He explained that the vp shunt I had in was at a fixed pressure. He replaced mine with one of the new programmable shunts where they can change the pressure in the dr's office. So far so good! I got in next week to get stitches out and hopefully he will release me back to work. Have you been to your dr since you've been having these symptoms? You might want to get checked out if the pain persists. Take care!

I have had a shunt since 10 days old and had several revisions over the years. I am 38 and the latest shunt revision was Feb 2010 which they put in a VP magnetic shunt. I have had the setting altered a few times due to too much drainage.

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

I'm glad I'm not the only one experiencing some of these symptoms. My story is a lot like yours. I am 16, have had a shunt since shortly after birth and only one revision. I haven't seen the neurosurgeon for quite awhile but I've been experiencing these pinching and/or throbbing headaches near the shunt. I've been debating if they're severe enough to be worth the fuss of an office visit.. But if this is as bad as my symptoms get, that'd be fine by me!

Dear Sisinchrist,
I wanted to message you because I too have dandy walker syndrome and hydrocephalus. I am nineteen and I have been suffering with shunt failure and intermitten shunt malfunction all my life. I also have an old tube coiled in my stomach from when I was five or so. I believe that I am currently going through a malfunction as I am having major headaches, I am sleeping a lot and my neck is aching on the side of my shunt. Unfortunately I haven't found anything that really helps the pain and every time I go into the doctor's they send me home, I guess I need to catch it at the exact right time. If your daughter would like to talk to anyone I would be more then happy to let her know that there is still a life to be lived through the pain and surgeries!!

I have a VP Shunt as well
 

I've had a VP shunt my whole life here's my story: I've had it operated on twice... I'm 28... I was born 3 months early and had the shunt put in at birth... I had my first revision when I was in grade 7- my symptoms before the doctor thought it could even be my shunt were flu like symptoms until it got to the point I couldn't stand.Because we thought it was the flu (there were some days were I'd be feeling great and able to go to school no problem) and then others were I was in bed for a week. I think all they did was replace the valve part... then in I believe grade 9-I had a whole new shunt put in... and I thank my mom for noticing the blockage (she was washing my hair after dying it) and asked if I was feeling okay... and I said yes because it hadn't gotten to the point where I was sick.

I haven't had any other problems since just the occasional headache where it hurts up by the valve... but it goes away on its own... is this normal? (no dizziness or any of the other symptoms I had when I was sick the first time).

My story
 

When do you tend to have the headaches?


Sent from my iPhone using Tapatalk

born with Arachnoid cyst asymptomatic need info
 

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).

New member relieved to find others in same situation
 

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.