How to manage shunt headaches?

jjmsu · 12-23-2010, 11:28 AM

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.

Calliope13 · 07-14-2011, 09:06 AM

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!

hydrotexan26 · 07-14-2011, 06:33 PM

Quote:

Originally Posted by Kwoznick

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

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!

Sheryll · 09-01-2011, 09:20 PM

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.

OldBaldGuy · 06-24-2012, 08:02 AM

Quote:

Originally Posted by Daughter Kristina

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.

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

laurenmae81 · 10-28-2012, 10:21 PM

Quote:

Originally Posted by Kwoznick

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'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!

ashley.marieo · 02-08-2013, 08:26 AM

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!!

Jae556 · 12-15-2013, 01:47 PM

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).

egypt'smommy · 11-15-2015, 05:39 PM

I was diagnosed with Pseudo Tumor Cerebra Jan. 2014. They shunt was placed a few days after that.. I have gotten back some eye sight from the pressure being on my optic nerve so long but it is not how it use to be. It has been almost 2 years sense the placement and I am now noticing a increase in headaches over the last week. My neurologist told me I might wold have headaches for the rest of my life and I would have them once in a while after my shunt but here lately they have been so often I have took notice to the problem. Has anyone experienced this? If so what should I do or what helped you? Thanks so much

jasn03w · 03-18-2016, 08:09 PM

When do you tend to have the headaches?

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