The Day-to-Day of Headaches and Hydrocephalus

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Dan Kricke, living with hydrocephalusBy Dan Kricke
Guest Blogger

When is a headache more than a headache? When do fatigue and vomiting go from a stomach bug or food poisoning to something that warrants a hospital visit?

Welcome to life with hydrocephalus. For me, more than anything else, the uncertainty around the symptoms can be the most frustrating part of the condition.

When I was younger and I would get the stomach flu, my head would eventually start hurting after a day of vomiting. And then the worry would be that the headache was the actual problem, that my shunt was malfunctioning and the vomiting was just a response. Everyone would keep a close eye on me and monitor my slightest change in temperature just to see, one way or another, whether we were going to pack a bag and head to the city to visit my neurosurgeon.

As I grow older I feel like I’ve become more in tune with my body, able to figure out whether an illness is just a run of the mill ‘everyone gets sick, sometimes’ thing, or if it’s hydrocephalus-related. Of course, that doesn’t stop my wife from worrying and wanting to drive me to the hospital at the first sign of trouble. That said, although I’m getting better at telling the difference between sick and “hydrocephalus sick,” I also believe my head has become more sensitive to certain things.

When I was a kid and everyone would get excited for that one or two days in February that would be surprisingly mild out of nowhere, I was always a little more cautious. I loved the warm weather but the sharp change in temperature would often be accompanied by a slight pressure headache. It wasn’t very debilitating, but it made those surprisingly warm days just a little less fun. Now as an adult, those surprisingly warm days are sometimes even worse. Sometimes a quick change in temperature leaves me feeling like I have a terrible migraine and all I can do is lie down and either hope it passes or worry that it’s something more serious.

In the time since the University of Chicago wrote their feature on me, I’ve had a few people reach out to discuss living with hydrocephalus. One of the people who reached out was an adult who had been just recently diagnosed. I talked him through some things and was able to help ease a lot of his fears, I think, but the one thing we both had in common were those stupid weather headaches. It was comforting to know that I wasn’t the only one dealing with them, but it also made me realize that there’s no easy path with hydrocephalus.

As those of us with hydrocephalus get older, we’re going to have our good days and our bad days. There’s no magic cure for the condition yet so we, and the people around us, need to be mindful that it doesn’t take much to disrupt our equilibrium. I’ve been out having a perfectly nice time with friends when a headache will hit and I’ve had to excuse myself. I’ve also been at work, again, feeling perfectly fine and then suddenly my head is killing me, and the last thing I want to do is stare at a computer screen.  I’m sure for some people, it seems like I’m flaking out of hanging out or that I don’t want to work.

I’m of two minds on how to deal with this. On one hand, you can’t spend your whole life explaining hydrocephalus to everyone you come in contact with. It’s impractical and as I’ve said before, many people have other conditions or issues they deal with on a daily basis, too. We’re all just doing our best to live our lives. But on the other hand, it’s our responsibility as people with hydrocephalus to make sure that people whose opinions matter to us know what we’re dealing with. I can’t just start having mysterious headaches and expect my boss to sympathize if I don’t provide any context for the headaches. Similarly, my wife has experienced firsthand how hydrocephalus can bring me down. She’s a life saver when it comes to explaining my headaches to other people if I have to leave a group get-together suddenly.

We may always have hydrocephalus, and it may impact our lives in ways both subtle and much-less-so, but if we communicate how we’re being impacted, it will go a long way towards making our lives easier. Easier both internally as we worry less about judgment from someone who doesn’t understand what we’re going through, and externally, as people around us realize we can be counted on, but occasionally may struggle with headaches and other issues beyond our control.

I’d love to hear how everyone else deals with these surprise temporary headaches. Do you have a good way of explaining them to other people? And remember to use the hashtag #lifewithhydrocephalus when you post on social media, sharing a story, moment, or advice on living with the condition. Then we can all find each other!

For more information on symptoms of a possible shunt malfunction, click here.

Download our free factsheet Headaches and Hydrocephalus here.

Watch our Ask the Expert video series with Dr. Marion Walker.

Click here to read other blogs written by Dan. READ MORE

136 Comments for : The Day-to-Day of Headaches and Hydrocephalus
  1. I was wondering if you ever get the feeling of pressure in your gums? It hurts like the worst toothache for a week or so, then disappear for a few months, but always comes back.especially on my left side. My shunt is on the right. I was diagnosed at21 with this, however I was born with spina bifocals and never saw anyone who told me this was other than stress headaches. It took me almost dying for another doctor to step in. I am 39, disabled now from, hydrocephalus and the back issues I suffer from.

    • Kelli
    • July 30, 2019

    I am 6 weeks out from emergency communicating hydrocephalus surgery! I 59 years old and spent 8 weeks in the hospital.( Rush Chicago) 4 in ICU. I have no memory of my time in the hospital! I recently started having what I thought was a toothache my dentist can’t find anything wrong. She suggested I see my GP for a sinus infection still no luck. The pain is on the same side as my shunt could it have anything to do with my hydrocephalus ?

    • Alokesh Bagchi
    • June 24, 2019

    I too am having hydrocephalus from 2010, I am 62 now, no issues, whatsoever ! I lead a normal life!

  2. I have a daughter with hydrocephalus, seems like every day is a struggle. Every single day she complains of a headache and I’m starting to wonder is it screen time? We live somewhere where it’s super hot, I’m not sure wat to do anymore and her doctors dont seem to know either. They keep saying nothing is wrong with her.

    • Kolet
    • June 14, 2019

    My son is 5-years-old and has a vp shunt. He suffers from intermittent headches which is not relieved by Advil or Tylenol. What do you do for your headaches??

    • Nancy Ennis
    • May 19, 2019

    I was diagnosed in 1983. The first shunt lasted 13 years. Since 1996, I had 4 revisions. In 2011 a third ventricular ostomy was performed. No more shunts, but I have suffered with a constant headache. I have gone to several Drs and have not found a cure for my headache. Can anyone help?

  3. What medication do you take for your headaches?

    • Dale Hubbard
    • February 27, 2019

    I have found that listening to Gong Bath music lying down really helps my symptoms. Having a gong bath live is even better but there are plenty of good recordings on Youtube. Meditating while I do this is even better.

    • Deborah Ellick
    • February 26, 2019

    Hello I’m 50 years old and I’ve had hydrocephalus for 21 years
    7 surgeries my first being a ventriculostomy the rest were shunt revisions
    The last one was just this past January 5 and I’ve been having headaches the past three days and I’m worried I’ll be having another surgery soon
    I’m scheduled for yet another MRI March 19 to make sure everything is ok but it’s very difficult with me since my ventricals are always going to be larger than other people so we basically just look at the last MRI
    I find I get to know those who are truly interested in my condition have no trouble accepting my early departures from say gym class or work
    But I would love to be able to discuss this condition with others who suffer from it and I’m still learning about it to this day
    Like apparently people with this condition have a shorter lifespan but I have yet to find out why so if anyone knows the answer I’d like to know as well!

    • Nicole Busch
    • February 8, 2019

    Hello, my eight year old son has a VP shunt due to congenital hydrocephalus. He has very little verbal communication and so we are constantly trying to figure out when he is in a bad mood due to feeling bad shunt wise or from a headache, as opposed to emotional stress. Can anyone tell me if cold weather is a problem with a shunt? We are in Canada and -30 degrees Celsius is not uncommon here. Not that we play outside in this weather but should I be concerned anymore about his shunt than just normal cold weather protection? Thanks!

    • Marilyn Goff
    • January 11, 2019

    Hi. I was diagnosed with hydrocephalus at 16 in November 2012, had my first shunt placement then and have had it replaced 3 times since then. My last replacement was February 2017, and I’ve been so happy to be doing so well since then. But about a month ago I had vertigo for a whole day, I decided not to go to the doctor when it went away but now I’ve had vertigo for almost three days straight. I can’t find anywhere that says serious vertigo is a reason to be worried about my shunt, but I’m really starting to get freaked out. Anyone else have to deal with vertigo because of hydrocephalus?

      • Emily
      • February 3, 2019

      I also get quite a bit of vertigo when I’m lying down

      • Deborah Ellick
      • February 26, 2019

      I’ve had a shunt for 21 years and just this past year have been experiencing dizziness
      I wish I knew why myself!maybe we will find an answer on here 😊

      • D Paul Munn
      • March 5, 2019


    • Steve
    • January 8, 2019

    I was diagnosed with hydrocephalus and first shunted ar 2 weeks and then again at 6 weeks, another revision when I was 15 years old, then no further action till mists recently in my 40s and valve was replaced recently

    • Nora Nelly Gonxalez
    • December 10, 2018

    I’m 28 years old. I was diagnosed with hydrocephalus when I was 21. My neurologist told me that I was born with it though. I was also told that my brain and skull are both too big for a shunt, that the only way they could possibly try and fit me with a shunt would be if I pass out or have a seizure. Thanks to God that hasn’t happened yet but I was just wondering if anyone else lives with hydrocephalus but without a shunt?

      • Niki Thomas
      • December 26, 2018

      I am a 51-yo female and am not shunted. I have had the condition all my life and have always suffered from headaches but it has just recently started to cause severe headaches. I hope that you find answers to managing yours. It can be scary but there are many treatment options. I see a Neurosurgeon Jan. 22nd and am hoping for some relief. Good Luck.

        • Deborah Ellick
        • February 26, 2019

        I’ve had 7 surgeries over the past 21 years
        I am so surprised you haven’t had any yet!
        I unfortunately may be facing yet another one as I’ve been getting headaches once again but I’m waiting to see what my MRI says March 19

      • Tonita Jetton
      • January 6, 2019

      My daughter is 19 brrn had it since birth and she doesn’t have a shunt

      • Mary
      • January 14, 2019

      Hi Nora, I was dx’d with hydrocephalus in 2011. I’m also not shunted. My Neurosurgeon manages it with LP’S. I have many autoimmune diseases and putting in a shunt would put me at risk for major infections, unfortunately. I have them about every two to three years. I’m hoping that this next one will last a bit longer. I’m also allergic to almost every local anesthesia, very common with AI diseases, so they have to be careful. Wishing you all the best!

      • Adam Banks
      • February 26, 2019

      Hi Nora,
      I am 21 and have just been diagnosed with hydrocephalus. I was told I had had it from birth but only a recent blow to the head in rugby had set of the process of pressure building up in my head. I had surgery last week which means I dont have to have a shunt. It is called Endoscopic third ventriculostomy (ETV), give it a look 🙂

    • Bob
    • December 8, 2018

    We have just had a 20wk scan with a diagnosis of fetal hydrocephalus. We have another appt on Tuesday and have been reading everything we can. I am relieved to know that people can live with this, despite the numerous struggles. Wishing you all strength to continue sharing your stories so that people like us can find them. God bless

      • David Olcott
      • December 25, 2018

      Bob I was born with hydrocephalus and had vp shunt surgery at 8wks and again at 13. I just turned 34 and have a beautiful 5 yr old daughter and a beautiful wife .. one word of advice to your child would be live without fear of this condition dont give it a sec of thought just live your life and do it furiously, forget the nay sayers and name callers odds are they might just wind up working FOR you lol .. most IMPORTANTLY NEVER GIVE UP OR GIVE IN JUST KEEP PUSHING FORWARD!!

  4. Thank you for posting this!! I’m meeting with a gal tonight who is sensitive to smells but is willing to give essential oils a try to alleviate some of her hydro symptoms. Is there anyone else with first-hand experience? I have read numerous stories but it’s always nice to hear it straight from the horse’s mouth. I believe she can find some relief and am excited to meet with her! Any input would be appreciated!

    • Annie
    • November 26, 2018

    i’ve had a shunt since I was 12 and now at 40 worried I am about to havea revision. I have had headaches daily for six months and due to have a shunt study. Cant think if any other reason to explain such frequent headaces. Anyone had one of these shunt studies done? My CT was normal appearhently but sometings not right. Thanks in advance. Great website.

      • Lakisha Harris
      • December 4, 2018

      Hi Annie,

      I am sorry to know you are experiencing complications. I would like to suggest having a more thorough evaluation of your shunt as returning or new symptoms might mean shunt malfunction

      All the best,
      Support and Education Team

    • elle gurnick
    • November 18, 2018

    Hi there my 12 year old daughter has Hydrocephalus caused by a Thelamic brain tumor found nearly 4 years ago. She under went an ETV which never worked then went on to have a programmable VP Shunt that lasted 8 months. She then got a low pressure valve inserted and has had 10 more operations since. She suffers debilitating headaches lasting 5+ days and some days not able to do day to day things. Her recent CT scan show over drainage yet the neuro team wont do anything to help her! It’s such a horrible thing to live with and don’t wish it on anyone. I have NO idea how and what to do to help her and feel absolutely lost right now. I’m super glad there is this to chat on as there is not many places available. I wish all of you the best!

    • Alwaniese Solomond
    • November 3, 2018

    Hi I am a 41 year old mother that was diagnosed about 5 years ago. They put the shunt in immediately as the pressure on my brain was so high that it cause irreversible damage to my eye. I’ve been struggling with headaches especially when its hot. I feel that this year in particular was the worst. I would like to chat with mother living with this. I feel that as a working mom of three its very difficult as I’m getting older.

      • Lakisha Harris
      • November 14, 2018

      Hi Alwaniese Solomond,

      I would like to suggest watching the following educational video on Barometric Pressure

      Also, we have a peer support program that connects you with a volunteer that has similar experiences. If you would like to connect with a volunteer, please using the following link to submit a request

      All the best,
      Support and Education Team

      • Heidi
      • January 7, 2019

      I too have a shunt and am a working mum I’m on my own with my daughter so sometimes it’s a lonely place I hope to be able to get used to living with this since I had brain tumour removed I feel I’m lucky to of survived all I’ve been through

      • Julie Formosa
      • February 14, 2019

      I have normal pressure hydrocephalus. Diagnosed at the age of 39. I had a shunt inserted 3 years ago.
      I suffer with headaches frequently. When I was diagnosed I felt I was losing my mind ( like dementia) it wasn’t very pleasant and suffered severe migraines for weeks on end. After the shunt was inserted I wasnt so confused. I do have some memory loss and do have headaches but not so intense. Now I have headaches maybe for a few days, pressure behind my eyes and my eyes get light sensitive. I just have to take each day as it comes.
      Having two kids can be very difficult sometimes and I just have to say to them sometimes I need to rest.
      I find sometimes laying down can sometimes make my headaches worse. There is no easy way to deal with kids and hydrocephalus.. I just do the best I can, even if thats pulling myself up and pushing myself to get things done. Thats what you have to do being a single parent with not alot of support.
      I dont try and explain my condition to many unless I need to.
      I do enjoy the cooler months though, this summer has had some bad days..
      Sometimes I find a great way to deal with it all is swimming in the ocean, helps to make me feel alive again and the kids dont complain.

    • Heather
    • September 26, 2018

    My daughter is 3 years old diagnosed with congenital hydrocephalus in utero. At 3 months old she started with severe vomiting and it looked like headaches… I live in Eastern KY so it would take us 3 hrs to get to the nearest peds hospital always being discharged on stomach virus. Shunt always checked out fine. These episodes started occurring every two weeks I began to wonder if it was something in her belly and the tubing the pain would be so bad.
    Sometimes it would last for hours other times days. We went to doctor after doctor and I was told it was not hydrocephalus related … she has been diagnosed with cyclic vomiting syndrome and is on medicine now we are at age 3 and have finally got some life back . She may have one episode a month and they have become more mild if we catch them early … after reading all the comments I still believe it is hydrocephalus related.
    We still are on 0 shunt revisions! Thank you!! 🙏🏻🙏🏻

    • Ilhem Issaoui
    • September 25, 2018

    I am Ilhem from Tunisia. I’ve had hydrocephalus since birth (congenital). I had a shunt implant at the age of 3, maybe 4. Now, I am almost 26, and I always have headaches and feel as if I am about to faint, even when simply standing up. I never vomit.

      • Janet Verduzco
      • October 23, 2018

      Hi, I recently had an etv about 7 months ago and until recently I’ve been feeling nauseas, and wanting to faint. But yet again I don’t know if I could be pregnant and if I’m not I’m worried it could be failure of etv done.

  5. I have hydrocephalus since birth, I have been under head operations atleast 5 times in my life….I have had shunt failure (which they had to take it put ) couple of times…I am 41 now. ..I get headaches once or twice a week. …I am exactly the same way, one day I am upbeat and ready to go and next day my headaches and vomiting makes me wanna kill myself…oh well, that’s my life and I have to deal with it…

    • Allen D Evans
    • September 13, 2018

    Why couldn’t research be done to determine the rate spinal fluid is replenished and then devise a shunt that allowed spinal fluid to leave the head at the same rate. Possibly there would be some variance in people and when people are in various situations. It seems so simple so there must be complications

      • Dinesh Kumar
      • October 27, 2018

      Medium pressure valves are available. It opens when pressure reaches a limit.

    • Adel
    • September 13, 2018

    Hi, my name is Adel, I am 32 years of age. I was diagnosed with hydrocephalus at the age of 10 after I had head trauma. They placed a VP shunt, which blocked a couple of weeks later, requiring it to replaced. Since then I was perfectly fine (22 years to be exact), until 15th August, during the course of the day I felt swelling in my chest and breast area. I did have breast augmentation 3 years ago, so I thought it was maybe a complication with the prostheses.

    Upon investigation it was found that it was actually the shunt that dislodged from my abdomen and discontinued in my breast and chest area, draining CSF at a fast rate.

    I met with a neurosurgeon who performed a shunt revision on the 23rd of August, he joint a shunt from my neck and placed it in a new area.

    I have had terrible headaches since the surgery, never mind the stress me and my family had to endure as it all happened so suddenly. Its been quite a rollercoaster ride these past couple of weeks

    I feel, the most frustrating part of this condition is that it can happen at any given time again, fortunately I am still young and can recover quite quickly, I am very terrified that this will happen again in my more mature years, and the complications that goes with it.

    Thank you Dan for opening up this forum for us to share our experiences, I found this site last night and really feel like a load has been taken off my shoulders because it is clear from the comments that I am not alone in this.

    • Jada
    • September 5, 2018

    I an 17 years old. I have hydrocephalus and had a shunt put in at 9years old I also had a brain tumor at 8 and a regrowth at 12. I am always terrified of not being listened to doctors when I come to them with updates where my daily migraines/headaches get worse. Whether those headaches are PTSD or something that just comes with hydrocephalus or brain damage, it helps knowing that people experience the same and are alive

    • Hi My son is 19 and has had a shunt since 1 year old . He had a tumor -and he has a lot of simularities like your story. He gets bummed out and most likely would enjoy knowing that a female close to his age could relate. Hope you are well today. It is hard and hard on the parents after the child. Best wishes to you and your family.

  6. Some of us have Hydrocephalus and Spina Bifida or some other birth defect!

    • Misty
    • August 6, 2018

    I had a shunt put in when I was 2or3 yrs old, 30 years ago. My last revision was 2003, when I was 18/19 yrs old. I am now 35 and thinking I am having the same signs as last time I had when my shunt needed revised. But the problem is I don’t have insurance and don’t know what to do?

      • Pam
      • September 17, 2018

      Have you been in contact with the Hydrocephalus Association? This is the URL for their contact page: Please let them know of your concerns! I don’t have this problem, but was researching what it’s like to live with it, when I came across your comment under an article.

    • Mark
    • July 15, 2018

    I was born with Hydrocephalus and got a shunt (a VA) just a few hours after birth. It lasted really well until I was 13 in fact. Then one summer I had a fit and started having major headaches. When I eventually got to see the neurosurgeon, which was a difficult process because my family doctor didnt think it was a shunt problem, He immediately, even without doing a ct scan, told my mother that I needed a new shunt and that it would be a VA. Now this is where my story is different from everyone else here. After I got the VA I havent had a single issue since and that was 37 years ago. Obviously I get headaches but everyone gets headaches for one reason or another but theyre not always hydrocephalus related. Although I cant prove it I think the skill of the surgeon will determine if you have constant problems even after shunting or a ETV.

    • Jodie Sisley
    • July 10, 2018

    I’m hydrocephalic and I have headaches daily, I’ve had 5 surgeries and still deal with daily headaches even at the age of 50. I try to keep up a good front but sometimes trying to explain how I feel is impossible. The pressure and vision impairment it cause me is hard to understand. This site is nice to have, I’ve dealt with this for 50 years and some people have no empathy for the problems that we experience.

      • Joni M Jefferys
      • January 2, 2019

      You sound just like me! I am now 44 yrs old with 2 kids and a 2 yr old grandson that live with me. I had a shunt placed in 09 for obstructive hydrocephalus which they say I was born with by the looks of my brain. I have daily headaches vision problems debilitating fatigue. I find that if I sleep more than 4 or 5 hrs its hard to wake up and my headaches are worse. I read the pressure increases when lying down so I’m wondering if it would help if I changed shunt setting. My family gets tired of hearing me complain but it’s hard to explain what I’m going through

    • Candice Horan
    • July 8, 2018

    I was so happy to find this page! I struggle probably 75% of my days. It’s terrible so many people suffer the same but nice to see I’m not alone.

      • Sean M Cooper
      • October 6, 2018

      Thanks i feel the same its nice to know that i am mot crazy

    • Sadie
    • June 30, 2018

    Hi im sadie I’m 21 im so glad i found this i thought i was alone in this i have the same thing i dont have a shunt and i was born with it and i have spinia bifida

    • Lizy
    • June 27, 2018

    I’m here to tell everyone who are suffering from migraine headache that there is a treatment for it, I was ones a migraine sufferers for over 13 years, I always had migraine headaches 2 to 3 times in a week to an extent i lost one of my eye site for days, it was really hell for me, i visited different doctor for the treatment but all were singing the same song of no treatment for migraine,  and I have taken different types of drugs, i spent all my money in drugs and health care centres, but still there were no avail, and I keep on praying to God to heal me from migraine headaches, but one day i was online doing research on how i can get treated on my headache and i found a testimony on how someone was been treated from migraine headache by Dr muzack of Africa with natural herbal products, at first i couldn’t believe him, but i was dying in pain and now I have no option again than to gives this same man a trial but i never knew it’s going to be the end of my headache i has been living with for years, the God who has done this for me will be praised for ever, that was how i contacted Dr muzack and he was humble and very understanding man, the way he spoke  politely with me, that was when I knew that my problems is over, that’s was how he sends the drugs which was made from herbal products over to me here in Canada, I took the drugs as I was directed to, it’s over 7 months now and haven’t feel any pain like headache and I’m even stronger than ever and it has no side effect. Feel free to contact him directly on his email address

      • Traci Bryson
      • July 14, 2018

      Hi Lizy, I’m Traci& I’m 56 & I’m thankful for your story of Herbal treatment!! I have had 12 shunt revisions. A Pediatric neurosurgeon at University of Chicago did the first one. Lenscrafters diagnosed me. My headaches are constant & it sounds like a high frequency, inside my head. I have cat scans & get told. Your shunt is functioning only to end up in surgery. Will you please send me the herbal remedy doctor name. Bless you my email is & my phone # 321-594-9402. Living in Central Florida doesn’t help. Bless you Lizy

    • Jade
    • June 17, 2018

    I’m fifteen and was showing severe signs, and soon diagnosed with Hydrocephalus at the age of twelve. Ever since, its been frustrating. Coming in with a worry, being told it’s nothing and “See you in a year”. I was told I wouldn’t feel Anything, but ever since have lived with severe side and back pain, as well as episodes of dizziness that go on for days. Though I don’t have answers, this provided some advice and reassurance that you told similar signs I go through. I do as well have tbe weather related headaches. Thank you for taking your time to make this, it provided great insight. If you have any advice on the side and back pain, it would be very appreciated, as well as maybe ways you cope with headaches.

      • Sham
      • October 4, 2018

      I have been suffering with headaches for 6 months took morphine but headaches have now eased I had my first shunt revision 04/09 I am bit confused never

  7. Hi dan im 35 years old I’ve got congenital hydrocaphalus and have had numerous surgeries but im happy to meet people who have the same condition and share my story

    • Myriam Farhat
    • May 8, 2018

    Hey doctor I have a very important question I’m having a very very strong pain in my head where the shunt is that is happening from about 3 days ago this pain happend twice or more a day I’m not vomiting or having any other condition what should I do should I go to my doctor? Pleas reply to me quickly thanks

    • Antonio Quiros
    • May 1, 2018

    I am 28 and have had hydrocephalus since birth. Had 7 revisions up to age 7. I’ve had headaches all of my life but this year is trying. I am almost certain it’s a season thing because I can go 9 with mininal headaches and then have them 4 times a week for 3 months. People never understand because while things like light and sound cripple people with migranes, those things I can tolerate. I start getting a stiff neck and from there there is no stopping it. I can get numb in my fingers, lips, and tongue. I used to take Depakote twice a day when I was young and it helped somewhat. I don’t think mine are migranes but just severe headaches with a shunt. I can get nausea too often with them. I suppose I’m stuck with these for life and while it’s comforting that I’m not alone with this, I still wouldn’t wish these on anyone!

    • Omeer
    • April 17, 2018

    I have had a vp shunt since birth. I had about 6 revisions. I suffer from pain everyday since i had my last 3 surgeries within 2 months in 2012. I have question if anyone can help reduce my stress. Im feeling pain on the whole right side so arm, neck, leg. This is the side i have the shunt. I also feel something dripping or moving down my head on same side. Previously i been told its normal when i went to the hospital. They normally push down the catheter to see. My grandma fell so helping her lift caused my arm pain and water dripping sensation. Is this normal? Please let me know. Thanks

    • Jessica
    • March 22, 2018

    My husband and I thank you for this blog. Our four year old daughter is a shunt kid since she was two months old. We’ve spent a lot of our time trying to figure out what causes her frequent headaches and vomiting. She’s had one revision when she was two years old, So I’ve learned what a shunt malfunction sickness is like.
    She continues to have random headaches and we started relating it recently to the change in weather. So it was amazing to read, what we thought might be part of the problem. I was wondering if you ever experience headaches when you get Really hungry? What about if you’re in hot water in the hot tub or in the bath? Have either of those things ever caused a headache for you?
    My daughter Julie seems to be very sensitive to any change in pressure. She is a miracle child and as she grows older it is becoming easier to understand what is going on with her. I’m so glad I was able to find you and read what you’ve written. Sincerely Jessica

      • Antonio Quiros
      • May 1, 2018

      Yes, if I go too long without eating it can trigger one too come on.

      • Kirk
      • May 11, 2018

      Hi Jessica, I have had this since birth. 5 surgeries. Last one was when I was 14. (I’m 34) all these posts made me feel less crazy about how I was feeling with this. I do get severe headaches when I’m hungry and in different conditions. Hot tubs, steam rooms that sort of thing. My doctor has told me that will happen. I close my eyes and deep breathing through my nose. (Not till I pass out lol) it helps me with the quick burst headaches. Hope this helps.

      • Shonna
      • July 20, 2018

      Hi Jessica,
      My Son had to have a shunt at 2 months old also and then it failed at 11 months. Since then he has suffered with headaches on and off. Last couple of years he has been having headaches in the summer mostly. Regular GP’s and even pediatricians have suggested dehydration, lack of sleep (or less than usual), too much sun and even diet as causes. It is so wonderful to see that there are others with a similar situation. I actually hadn’t considered things like weather or pressure.
      The last couple of days we are on vacation and my son has been waking in the morning and feeling awful. Headache and vomiting. About 4 hours or so later though he is fine. Have you experienced this? I find this extremely odd…
      Thank you for sharing and posting.

    • Janet Verduzco
    • February 1, 2018

    I was born with congenital hydrocephalus I am now 25 and I have had 5 brain surgeries since then I am scheduled to have an etv done in three weeks since I have been feeling terrible. I have really bad head aches in the front and back of my head but the ones on the back of my head are pressure it feels awful that I have to stop what I am doing. I also since the removal of my shunt in March 2016 I have had to deal with double vision, nausea, dizziness throughout the whole day, vomiting. But these past couple of days I have had really bad pressure at the bottom of my head and neck. I don’t know if that’s normal or not but I’m calling my neurosurgeon tomorrow because it’s to where when this happens I cannot lift my head or open my eyes. Do you guys think it’s Normal ?

      • Naima
      • March 12, 2018

      Hi Janet,

      Do you get the answer on why you’re sometimes unable to lift your head or open your eyes? As the symptoms are quite similar to mine. Would like to know if i should go to my NS

      • Antonio Quiros
      • May 1, 2018

      I get the neck headaches as well. They end up making me hunched forward where I can’t turn my neck. How did your etv go.

    • Richard L Fry
    • January 30, 2018

    Hi Dan, I can appreciate what you are going through n totally understand what you are saying.
    I was diagnosed at the age of 5, fifty-four plus years ago this past September.
    I had the right side of my brain caved in when I was born, then over a short time filled in.
    All through the years before diagnoses, I had photophobia, phonophobia, problems with walking, then eventually double vision.
    Before my first shunt four burr wholes in my skull were drilled to relieve the pressure. My 1st shunt was to the heart at age 5.
    At the ages of 10, 18, and 34, my shunts were peritoneal. My first three shunts were placed when I was an army dependent and done at Walter Reed Army Hospital/Medical Center, in D.C.
    In ’93 it was done at Johns Hopkins university hospital in Baltimore, MD
    In ’01 after we moved to Pennsylvania, to be closer to our families, I had a programmable one placed into the peritoneal area, at Penn. At. Hershey Medical Center. Now Penn. St. Geisenger. I had a T.I.A. the day after discharge. Later that year I developed an infection and had an external drain in for 10 days while on antibiotics. I developed double vision for the third time, and continue to deal with that.
    My shunt now drain’s into the thoracic region of my chest.

    • Don Evans
    • January 11, 2018

    Thank you fo this article that has given some insights into what I have been going through. In 1976 I had a large pituitary tumor removed by craniotomy. Some tumor remained in my spenoid sinus and they gave me radiation treatments. I developed hydrocephalus soon after and when I complained of head pain, they said it was my skull healing. Eight months later I had a VA shunt put in but it failed . I had a shunt revision four months later. Now at 65 it seams that slight things cause migraine like headaches. Thanks again now maybe I can make some people understand.

    • Jade
    • January 5, 2018

    I’m nearly 22 years old. I have hydrocephalus. Well recently an mri on my spine showed pressures in my brain. I don’t have a shunt as it wasn’t needed at birth. But now I’m scared I need one..

      • LAURA
      • January 12, 2018

      I have had Hydrocephalus since birth but did not have a shunt. In March 2017 I had an ETV to relieve pressure.

        • Angela
        • January 18, 2018

        I was diagnosed in 2008 had an ETV no revisions but suffer headaches and sickness especially in weather changes and windy weather

          • Kevin Howard
          • February 18, 2018

          ETV shouldn’t need a revision. its a hole in the a skull.

            • Bill
            • February 26, 2018

            ETV is a hole in the third ventricle in the brain on the floor or anterior. It is not a hole in the skull. They can heal up and close, resulting the the procedure needing to be repeated.

              • Stephanie
              • July 2, 2018

              Yes. I had an etv that closed in 6 days which resulted in having to have a shunt placed. It’s been 4 1/2 months since I was diagnosed and had surgeries.

            • Ann
            • March 7, 2018

            ETV must be monitored just like shunts, unfortunately. They do require revision and can close suddenly causing serious symptoms and even death. It can become obstructed with brain matter, etc.

        • Meranda
        • August 9, 2018

        Laura, that’s odd for me to hear. Doc told me they do not do ETV after a year old. But! I am glad I found you. My daughter had three shunts fail in four months. We had the ETV. She cries and rubs her head if she is layed flat for awhile. Did you, or do you experience this?

      • Howard
      • March 29, 2018

      Jade, shunt surgery sounds scary but mine 10 years ago was pretty much in and out, no complications, one shunt revision to relocate the drain in my abdomen. I had my ACL rebuilt a few years before and the pain, rehab, recovery time were all orders of magnitude worse than the my shunt surgery.

      • Adrienne
      • April 14, 2018

      I am in the same issue, I was told I have it but I don’t need treatment should I be worried? thank you

  8. I have living with this condition since birth. I have not found any relief from the pain. From 10 months old til here now i am a 41-year-old man who is getting more frustrated because the older I get headaches ate more painful than previous years. I am so tired

  9. Hi there my son is one years old and he has started hitting himself on the head and I am worried about this because my son had two shunts in I’m not sure if the floid building back up or if it just the stage of his development

    • Lita R.
    • November 25, 2017

    I’m a year in after having my ETV surgery and I thought I wouldn’t have to deal with these headaches but I do and my surgeon warned me about weather triggered headaches. Thank you for this blog, it feels good to know someone understands what we go through with Hydro

    • Joanne
    • November 19, 2017

    Can anyone advise me if there are NPH local support groups. If so how do i find them?

    • Heather
    • November 16, 2017

    P.S. Dan — I loved what you said about the fact that we can be counted on, but we occasionally get headaches that are out of our control! One thing I never want is for people to treat me differently or to feel I can’t be counted on just because of this condition. So perfectly stated by you!

    • Heather
    • November 16, 2017

    Hi, Dan! Thank you so much for sharing! I love your positivity! I also love hearing from someone who truly understands this crazy life with a shunt! Haha! I acquired hydrocephalus at age 11 after having a brain tumor removed. Doctors put in an lp shunt at the time and told my parents I would probably outgrow it. Sadly, I didn’t, but the remainder of my elementary years, my HS years and college and grad school years were all very normal! I never had symptoms and I truly thought that chapter in my life was over. I realize now I was very blessed to have that time!!! I still went for check ups and kept in touch with my surgeon. Sadly, I discovered I was still shunt dependent after 15 years when my lp shunt failed during my first pregnancy. ( bad timing– not related to the pregnancy) I was an elementary school teacher in my tenure year when this happened. Talk about stressful! I was misdiagnosed and sent home from the hospital more times than I care to think about. After way too much suffering, I finally received a proper diagnosis, had a vp shunt put in ( took 3 tries) and went on to deliver a healthy baby girl! Thank God! I had my son 5 years later and all seemed well– no headaches and I was living the life of a typical suburban mom. The fear of shunt malfunction was always there, but I tried so hard to shove it down into my back pocket. As you said, we have this cross to bear, but others are living with their issues, too. It’s best not to dwell on the situation. Sadly, last year, at the 15 year mark again, I became very, very ill. History repeated itself, as my surgeon was overseas when this happened and, despite the fact that I did not mess around and went directly to one of the top hospitals in the country, the misdiagnoses and unnecessary suffering began again. Ridiculous. Two botched revisions later, my surgeon returned and put in a shunt assistant so we could try to control my shunt from the outside. I have had my ups and downs with the shunt assistant and one year out from the third surgery, I am still not back to normal, but am closer than ever. I am being watched and not taking any chances. I call the doctor right away if I think something is up. I have also discovered that an invaluable person to have in your life is a neuroopthalmologist. In addition to a neurosurgeon, regular visits with this type of eye specialist can save you from so much unnecessary suffering. If pressure is building in your brain, your eyes will always tell the story. Following this last round of surgeries, I have started experiencing exactly what you described– extreme sensitivity to changes in weather. I can get awful headaches when the temperature suddenly changes or if a storm front moves in. Like you, I am very in tune with my body, but the headaches are sometimes bad enough to make me wonder if my shunt is failing again. I agree with you that it’s not always the easiest thing to explain to people! Very close friends know the deal, but, honestly, nobody truly understands unless they actually have the condition or have a spouse, child or close family member with the condition. I am back working part time, traveling, caring for my kids and socializing whenever I can, but headaches can strike at inconvenient times. I try my hardest to grab onto the good times when I can and not allow fear to hold me back. I can assure you, though, that having half a dozen brain surgeries and experiencing the pain of a totally nonfunctional shunt can leave a person somewhat traumatized. That is why faith and optimism are so important. It is very easy to give in to your fears and allow precious opportunities to pass you by when you have this condition. It’s a constant battle, but I feel very lucky despite all of it. Life can still be so good when living with a shunt! As a matter of fact, most people would never guess what I have been through and it makes me feel like a have this secret and that I am a survivor. It helps put things in perspective for me– most of the time. Sometimes I get mad when I think about what I have been through, but, mostly, I am so grateful that I am here and have managed to lead a very fulfilling life so far! It’s not nearly over yet! In any case, it’s comforting to hear from others who are experiencing what I am experiencing! It’s nice to know you are not alone!

    • Bryarly McEachern
    • November 16, 2017

    I’ll also add that when I have headaches, my shunt sometimes is overdraining and sometimes underdraining. I can usually tell the difference, because if I get the headaches in the middle of the night after lying down for several hours, then it seems to be underdraining, and when I get up and walk around for 20-30 minutes, the headaches ease. If I get the headaches during the day when I have been up and about, or sitting upright in a chair, then they get better when I go lie down for 20-30 minutes; so in those cases, it is probably overdraining.

      • Beverly Ryfa
      • March 16, 2018

      When you experience this period of under-draining or over-draining of your shunt do ever vomit with it. My 17 year old developmentally delayed daughter had her shunt revised in Sept and November last year. 2 weeks after the last revision she started vomiting. We were sure her shunt had failed again but scans showed it was working very well. Since that time she has vomited about once every month. Of course we are scared to death that it may be an infection. She had no other signs…no fever, etc and seems fine afterward. I am calling her neurosurgeon and asking him to see her and check blood levels etc. Just wondering if severe headache caused from over-draining and under-draining could be happening.
      When this happens to you do you have to have revision??

      • Yvette de Saran
      • August 22, 2018

      This sounds like me everyday, I feel like I am going mad, I don’t think people believe me when I say I get woken up every single morning between 1 am and 4 am with a splitting headache no matter which way you lay, and I only get relieve after being up for an hour or so. Thank you, Thank you for this blog.
      I am yet to be diagnosed and shunted if necessary.

    • Bryarly McEachern
    • November 16, 2017

    Thanks for taking the time to write about your experience Dan and everyone who left comments. I too have had the experience of headaches that come when the weather is changing drastically. I also had horrible headaches the entire time that I visited my parents in Egypt, which almost continually has high-pressure weather systems. I told my neurologist and neurosurgeon about this phenomenon, and they said they had never heard of weather affecting one’s hydrocephalus symptoms. They were very skeptical. Clearly they were wrong! I only found one pediatric neurosurgeon who took an interest in my theory, and he said, “someone should do a study on this.” I don’t think anyone ever did, but we should try to find a a few researchers at a university who would be interested in conducting a study on the relationship between shunt function, atmospheric pressure, and hydrocephalus symptoms. Would anyone here be interested in being a test subject if we were to find a few neuroscientists to research this? Maybe it would involve keeping a diary/log of symptoms and a log of barometric pressure and weather.

    • Just wanted to let you know that I’m also one of them who is totally influenced by weatherchanges. Before I had my shunt, I have a NPH since October 2004 and at that time I was 36 years old, I never had headaches. Now, for the last two years it all started with terrible headaches resulting in migraines and they get worse when there’s a big weatherchange. I sometimes don’t know what to do and don’t want to call the doctor since they only take neurogical tests for checking if my shunt is failing, but more than that they don’t know about shuntoperated persons. For migraines it’s medicine I get, that’s it. Sometimes this can go on for 3 or 4 days. I do go to work then until I really can’t take the pain anymore. I am always standing upright when working behind the computer, don’t want to sit. I stand more than I sit even when I get home after work. I even stand when eating at times. Perhaps this can also be one of the reasons why my head is causing pain, I stand upright too much.
      I wished we could get better understanding even from our general practitioners when calling for help for those extreme headaches. I’m situated in Sweden and we have great healthcare but general practitioners’ knowledge on NPH is not that great.

    • Alice
    • November 13, 2017

    Hey Dan, thanks for the article!
    I had no idea the weather sensitivity, or neck pain, for that matter could be related to my hydrocephalus! I find that if I wake up with neck pain, then go back to sleep for another 4-8 hours, I wake up feeling fine, and it only gets worse slowly over the course of the day.

    I’ve been wondering, why do people get shunts? Several neurologists have told me I could skip the shunt if I was very careful (in short, no fun allowed) and nothing got any worse, but from what I’ve read on forums, they seem to do a lot of harm, and hardly any good at all.

    What I did in terms of work and studies was drastic, but it works for me. I quit my job and went freelance, and I switched to a distance course. I make a little less for the moment, but it sure beats doing nothing but working and sleeping for the rest of my life. In addition, the frequency of symptoms of the small collection of issues I have with my brain and skin, including hydro, has been reduced by at least half since a week after a quit. That’s been the best decision of my life.

    • Bridget Johnson
    • October 26, 2017

    I was born with hydrocephalus. I have never had any issues. The headaches always happened when the barometric pressure changed. This time around, I have been dealing with headaches since June 15th, and other symptoms. I had a CT scan, the nurse practitioner and neurologist found nothing. They say I need to be on drugs. I have been vocal about having hydrocephalus. But they didn’t listen. Now I’m going to another neurologist. I hope I get answers soon!

    • cecilia
    • October 12, 2017

    My Son had the same 6months ago. He has headaches always. Is there a relieve at least. Help pliz

      • Dawn
      • January 5, 2018

      Hi i have hydrocephalus with Wernickes encephalopathy from having hyperemisis i just wanted to suggest a non pill form that has helped me if you wanted to try them essential oils have helped me weather headaches and stress and anxiety over having this. Just a suggestion on what helps me.

    • A
    • October 7, 2017

    I was diagnosed with hydrocephalus at age 10 with revisions at age 11,15,16,18. At that time I started experimenting with marijuana and found that those headaches and soreness around my shunt disappeared. 25 years later I have been h eachache and revision free. Marijuana reduces the amount of csf the body makes. I notice if I go a few days without smoking I get the worst headaches. I do live in california so I don’t get weather headaches. I know marijuana has cured me.

      • Gina
      • October 9, 2017

      I was diagnosed with the disease at age 27 and have had headaches for most of my adult life, but have no other symptoms (not yet at least). For those of you who have decided on the shunt placement, at what stage of the disease have you decided to undergo this placement?

        • Stephanie
        • July 2, 2018

        Before my shunt, I was having brutal headaches EVERY SINGLE DAY. Multiple headaches. I would alternate aspirin and Excedrin, just to have a headache come back in 3 to 4 hours. I was unable to work for 4 months due to the headaches. There was not 1 day in those 4 months that I did not have a headache. That’s probably beyond the point when a shunt is needed but I knew something was definitely wrong, it just took a while for me to finally be diagnosed properly.

      • Suz
      • October 16, 2017

      My sister had a shunt revision in May. She lives in SouthernCalifornia and today her headache is horrible. So without marijuana you never got weather headaches?

    • Laura
    • September 23, 2017

    I wanted to know if there are any resources to improve memory after an ETV. I’ve noticed I’m struggling since going back to school. It’s like I’m studying apples and the test is on oranges. Does anyone have suggestions? Would the TBI clinic help?

      • Victoria
      • October 22, 2017

      Hi Laura, I had an ETV 2 years ago and Continue to experience the issue you are describing. It seems to ebb and flow which is challenging to live with.

  10. Dan, thanks for your blog post I found it really interesting, I too am pretty sensitive to CSF pressure changes , something I found out in the many LPs prior to shunt being placed. My hydro resulted from a SAH in 2012. These days low pressure weather systems feel like someone has turned my dial right down but I just know on this days I have to do less. One trick I have when I know I am low pressure is to have a can of full fat coke, it seems to help and I figure hey I don’t drink or do much else so a can of coke wont hurt too much. At work I have blogged about my symptoms too which helps colleagues understand when the fog comes and I also started a blog whilst in hospital waiting for my shunt which I still post on as well. Talking and sharing helps that’s for sure

    • lin darby
    • September 2, 2017

    I had an ETV 10 years ago & recently my headaches are more frequent with ocular migraine ..Don’t like to bother the docs but I do get worried about etv failure..

    • Sea. Refuse to recignize it as a Shunt related problem. I have kept charts for years
      Read my book
      Foundation for STBI Survivors Kathleen

    • Kathy
    • August 20, 2017

    Hi, I just found this site. I was born with hydrocephalus in 1962. I am now thinking I am very lucky because I have had no problems. I have been curious to hear others stories. Growing up my mon never made much of it but as I get older I am more interested

      • Kathy
      • August 20, 2017

      I had shunt surgery in 1963 and have had no revisions.

    • Ayesha
    • July 18, 2017

    Hi. This is Ayesha.
    I have one brother who was diagnosed with hydrocephalus when he was 6 months old. He is 9 yrs now.
    The most disturbing thing is that idk if his bad health is normal and what to do to put him at ease. I fear that there might be something wrong with his shunt. He is weak. Often starts vomiting out of nowhere. Gets fever sometimes and stops responding.
    He has had just one operation till now. So i wanna ask if you guys can help that what should i do to make sure that his shunt is fine and he doesn’t need another operation and also how to deal with him when he’s not well.

    • Get mad I had too
      Barometric pressure causes disturbances but they refuse to listen. I have years of records. My own hell

        • Frank
        • July 25, 2018

        Check out video
        ASK THE EXPERT Episode 5 Barometric Pressure
        100% agreement that weather affects shunts

    • Marie
    • May 23, 2017

    I live on the gulf coast so when tropical storms come in the pressure headaches are there too. I don’t get random headaches in the day but I often have been waking up with them along with nausea and having to sleep (practically sitting) to get rid of it along with tiny ole me taking 4 advil. I also get vertigo a lot with things as simple as touching my toes. Now what I’m explaining could be normal with this condition or could mean something more but I don’t know. My last revision was when I was 3 and I’m now 18 and don’t really know much.

    • Tina Goon
    • February 15, 2017

    It is comforting to know that the weather headaches are common. Sometimes I get the feeling, they think I imagine the pressure. My family is very understanding as my children know this is just he way things are for their mother. The 3 oldest were already born when hydrocephalus changed our lives- It’s most likely a genetic defect in my families history. We have 3 generations with the condition. I had one more child, we wanted a big family. My children are grown and 2 have started families. They know the signs to watch for” just in case”.
    I live a perfectly normal life. I raised our children, enjoy watching the grandchildren grow.
    Normal is whatever we make it. My life is normal, with days thrown that are not so much. But we all have adapted. I will not leave this rule my life.

      • Lisa
      • February 21, 2017

      I have hydrocephalus probably since birth I had my second op last December am ok apart from bad headaches that nothing will get rid of.

      • J.sweet
      • May 1, 2017

      Just been diagnosed with hydrocephalus at the age of 44, (worker and thought I was healthy) after suffering the worst headaches ever as if my head was going to explode atleast once a day for about 3 years and being fobbed off from my GP with stress/anxiety, didnt have any of that until now as I’ve got to go for a pressure reading in my head – worrying.

    • Gracie
    • February 14, 2017

    I’m sitting here with tears pouring down my face. FINALLY, someone who gets it. I’m 47 years old and weather changes, even mild ones cause me so much pain! I don’t have a shunt yet. We tried an ETV first and it was awesome for a few months to have NO headaches, no pressure, no whooshing sounds every time I move. But it’s all back so the shunt is going in on March 20…one month from now and I can’t wait. We just had a weather change where I am and I’m barely holding on through the pain. Imitrex isn’t working, I just took some Advil and that’s taken the edge off. Thank you for explaining it so well. Just knowing that I’m not alone makes a world of difference. The fatigue, the headaches…

      • Xiomara Ramirez
      • May 21, 2017

      Wow Gracie you are the first person I have been able to find that also had ETV rather than shunt placement I live in constant fear that i will need surgery again. What where the symptoms you experienced before discovering you needed a shunt? I feel like I’m slowing going back to how I felt before my surgery. However everyone just thinks I’m paranoid and they don’t understand

        • Karyn joned
        • July 3, 2017

        I too was dignosed with hydrocephalus u at 46 !
        Always had headaches , thought it was normal . Most days I have brain fog , like omit with it at all. I hav been offers the ETV. But am putting any operation of until it’s vital . My neurologist / surgery has agreed to let me watch and see. Some days are worse than others. I know I will have to have it eventually .

    • linda Lawrence
    • October 3, 2016

    My daughter has Hydrocephalus aqueductal stenosis as of may 2015 since then she has had 11 operations all because shunt was blocked.she has deliberating headaches on a daily basis.megan describes them of the feeling her brain is being pulled out of her ears

      • Beverly Ryfa
      • March 16, 2018

      Linda, do these headache cause her to vomit? My 17 year old developmentally delayed daughter has had hydrocephalus since she was 2 days old. She has had 11 malfunctions and two infections over the course of her life Her last two revisions were in Sept and Nov of last year. She has been vomiting about once a month since the last revision. Cat scans and X-rays showed shunt was working well. Very scared here.

  11. Thank you for posting this. As frustrating as it is for the many, many doctors who tell you, ‘it’s just in your head’ (YES IT IS IN MY HEAD!!!) it’s such a comfort to read someone’s experience that take the words out of your own mouth.

    • Kim Geisinger
    • July 1, 2016

    Hello, My name is Kim and I have a 16yr old neice Karli who is struggling from headaches. She was born with hydro and shunt placed at 2 days old. It lasted until she hit 14 then she underwent 4 surgial procedures until they finally replaced shunt instead of trying to repair old one. Since then th headaches, short term memory loss, seisures began. There was a small brain bleed in the last surgery. Her mother died after the last surgery and I wish there was something I could do for her. I, we would read and use any suggestions that may be posted. She needs to meet other teens her age who are struggling with this.

      • Robin
      • July 3, 2017

      Hello, I know it’s a year since this post but my daughter is 16, has a shunt since baby with no real problems until now..she started last week with dizziness and nausea and a week later she’s no better…her neuro has ran a bunch of tests and doesn’t think it’s the shunt (although her ventricals are larger than back in Sept. in previous Ct scan) This isn’t fun at all and just trying to get her back to work and functioning again!

        • Terri
        • July 12, 2017

        Hello. I don’t know if this will help, but my daughter, now 25, had her first vp shiny placed when she was 4 days old. She has had upwards of 30 revisions. At this moment she is in yet another ER with debilitating H/A. We have been in ur shoes many times. I have signed consents to exploratory surgery so they could go in and look at the shunt. Every time it was blocked either in the proximal or distal end. I hope this helps. I wish u the best.

    • Hello Kim,
      My name is Annamary, I have a sixteen year old daughter that was diagnosed with hydrocephalus at birth and got operated at 9 months she has vp shunt same one til this day. My daughter has headache every day and night nothing really helps. She goes to school and we try to give her the normal life as possible but her headaches interfere alot. She misses a lot of school and classmates don’t understand why she misses school a lot and why she always goes to the nurse. We live in Philadelphia, Pa and I also would like my daughter to meet someone her age group with hydrocephalus.

    • Chad
    • May 31, 2016

    I am a 36 year old man with congenital HC. Five days ago, i underwent an endoscopic third ventriculostomy, and i am now recuperating at home. My recovery has been rapid and there have been no signs of complications. However, my morning headaches (which i’ve been dealing with on occcasion for much of my life anyway) have been daily occurrences since the surgery. I’ve been assured that this is normal, and i believe that assurance. I just want to thank you for sharing; i have been diagnosed with migraines for much of my adult life but was only recently diagnosed with HC. Keep on truckin’. I know how frustrating it is when you’re attempting to do your job and fulfill your duties and you can’t becauseof headaches.

    • Basil Anderman
    • May 3, 2016

    I was just diagnosed with this illness. What causes the headaches?

    • Kelly Krabbe
    • April 20, 2016

    Thanks for sharing. As a mother of an 8-year-old I have a hard time judging my son’s headaches. To hear your personally experience with the onset of headaches I am able to better understand my son’s complaints!

    What do you find helps relieve the headaches?

    • SarahAnn Whitbeck
    • April 19, 2016

    Terrific article – and a wonderful summary of the issue. Thank you!

    • Vicky Rose
    • April 16, 2016

    It is vit is very interesting. I have had Hydrocephalus since I was born and had to have loads of shunt revisions. I am actually waiting for a new one as this one is over draining. It is good for people to know this as people get the wrong idea about the condition. Thank u for this information

    • Keasha V
    • April 16, 2016

    This is an amazing read! I was diagnosed at 3 months and have had my shunt since then.

    • Sheila V Gazlay
    • April 16, 2016

    When I read something like this, I assume the author is talking abut normal type headaches like around the forehead. I don’t consider these relevant to my hydro so it’s interesting to read such an intelligent article saying, basically, that maybe I should. Even at my age, I feel I’m learning more all the time about things like hydro and weather and the relationship between hydro, weather and scar tissue which is interesting. This is the first article I’ve read where the author really explains the headaches he’s talking about and sort of shows that it’s not just back of the head headaches that are a clue something may be wrong.

    • Adam Soderlind
    • April 15, 2016

    Thanks Dan, my wife and I believe our 21 month old son experiences headaches with weather changes. Sometimes his irritability seemed to correlate to barometric pressure changes. We have yet to find research to confirm our personal findings, but we are confident there is some connection based upon his behaviors. The difficult part, which you referenced, is that such changes in weather do not impact him the same way each time. Thanks for your blog and we hope you have many years free of complications!

    • Ron Kelleher
    • April 15, 2016

    Hi Dan we have to talk. I posted your article the moment after I finished leaping around the room. No one believed me when I said barometric weather changes affected my head. I began keeping a journal & not for me for the non-believers & those without “SHUNTS” & for the doctors who would tell me that can’t be right -Them to were not equipped with a “shunt” either
    This only began back in 1986 when I have to have my shunt changed as it gave up the ghost. So on my 24th birthday March 24th 1986 I had a new VP fixed valve placed above my old one as they were afraid of hemorrhage removing the valve. They place my “NEW” one slightly above the retired one. My “NEW” shunt turned 30 the day I turned 54 not long ago this year . My prior shunt though gave me no problems with weather whatsoever. Now I also have problems with florescent lights the lower the ceiling the worse it can be. I have solved that though with shades that go right around my head with no light to come in at the sides. Now with my cane I have at times & my shades in these stores I have mistaken for a bling person. If I ever get low on cash I can always sell pencils outside the stores . Are you on Facebook I love for you to join my page. My e-mail is rkelleher Ron Patrick Kelleher on Facebook known as Hydropioneer You can google that I am everywhere. I created a database 7 yrs now & in that time linked 201,000+ . Ron

    • emma
    • April 15, 2016

    everything you write could of come straight from me but i m a 24 yr old female in aus and my hysband is also very supportive like your wife. during last vp shunt revision i now have epilepsy as a side effect. i can totally agree about weather 110% glad im not alone

    • Judy
    • April 14, 2016

    I was born with hydrocephalus & am the co-founder of our local SB&H support group. A lot of our members have headaches due to severe changes in weather. My close family/friends know this and what helps me (dark, quiet, a hot bath, and a T3 pill.). Understanding goes a very long way.

      • Pat
      • September 21, 2017

      Your tips were very helpful Judy. Thanks for sharing. I have 8 different scents of Avon bubbles to choose from, so I’m lucky. We are expecting a rain/snow mix in Calgary and the pressure change really does a number on my head. It’s a good thing I am alone because I get grumpy when my head hurts. My sweet cat loves me no matter what and puts up with me when I just want to sleep. It’s been 6 years since I got my vp shunt with 24 revisions. I can still walk and haven’t lost my sense of humour so all is good.

  12. This helps me to understand this disorder a little more. I do have a question for you, or maybe asking some advice…
    I am part of a mission from my church here in the US. We have adopted a village in the northwest mountains of Honduras. We’ve been ministering there for 5 years now, helping them with everyday physical needs and sharing the Gospel.
    My questions about this disorder are because we have found out in the last year that one of the children (Jobsan) has hydrocephalus. He just happens to be one of the children that has developed a really close bond with my family. Of course, being in this remote very poor village in Honduras there is no way for them to get medical treatment for this condition. I wanted to reach out to you and see if you knew of any type of organization that might lend some help or information of how we can help this sweet 7 year old.
    I wish I could attach a picture so you could see his smile!! I’d appreciate any information or contacts you might have!! Thanks so much!

    • Stephanie
    • April 14, 2016

    Thank you for opening my eyes concerning weather related headaches. My daughter has had a shunt since she was 5 yrs old, she is now 22. Thank goodness it has never malfunctioned, but we’ve had symptoms where we’ve wondered if it were malfunctioning. one time she was having headaches and it ended up being an ear infection, she never once complained of her ears bothering her. Just recently we were in the E.R. for severe headaches and they couldn’t figure out was wrong. the next day we saw her endo crinologist and it was a sinus infection thank goodness. It really makes sense that the weather could affect her.

    • Kathleen
    • April 14, 2016

    Last year, at age 59 I was diagnosed with NPH, after first being diagnosed with dementia and a few other ailments. I had brain surgery and a shunt last June. I also have an acoustic neuroma on my left side of my brain. I do have headaches, neck pressure and it seems, mood swings, much as you described. There are days that I can’t concentrate to save my life and my balance is off. It’s sometimes difficult to know if it is the hydrocephalus or the neuroma causing my issues. I apologize a lot and it seems that I get exhausted early in the day. When I’m done, I’m done. I’m not mad at anyone, I’m just tired. I found your blog post very interesting as I get it!

      • Kate
      • May 26, 2017

      Hi kathleen. How are you coping now? My sister is having exactly the same symptoms as you.

      • Jeremy Symington
      • May 29, 2017

      Hello Kathleen–Thank you for sharing your experiences here. I was diagnosed with NPH three years ago at the age of fifty-seven. My doctors believe that I’ve had this condition for most of my life. It was sobering to learn that I had hydrocephalus, but also a relief as it explained many odd experiences I had-had growing-up. I experience the same periodic problems with concentration and balance that you describe. It’s something we TBI-folks have to contend-with indefinitely. Keep the faith and remain optimistic; we’re all in this together!

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