Hydrocephalus…It’s a Real Headache

By Tom Smith, Adult Services & Outreach Coordinator

Recently, we posed this question on Facebook ‘What does hydrocephalus mean to you?’ We received scores of answers, all of them great, many of them poignant. One of them was: “Headaches – and I wonder when they might be a serious problem.”

Headaches have a very special place in the pantheon of difficulties facing people with hydrocephalus. Everybody gets headaches. But the headaches associated with hydrocephalus are in a class all their own and add a severely complicating factor to treatment, diagnosis and quality of life for people living with hydrocephalus.

Here at the Hydrocephalus Association, we often field questions about headaches. We have several excellent resources available on this important topic.

Fact Sheet: Headaches and Hydrocephalus
This is one of the many fact/information sheets we make available. Some of the leading lights of hydrocephalus treatment provide a wealth of information.

Conference Presentation titled: Headaches in Patients with Shunts
At the 11th National Conference on Hydrocephalus, Dr. Harold Rekate, Chief of Pediatric Neurosurgery at the Barrow Neurologic Institute in Phoenix, AZ and member of our Medical Advisory Board gave a presentation on headaches in shunted patients.

Here are two other articles by Dr. Rekate
“Headaches in People with Shunts”
“Headaches and Slit Ventricle Syndrome”



12 Responses to “Hydrocephalus…It’s a Real Headache”
  1. Julie Mata says:

    Thank u so much for posting…its great to know im not imagining my headaches or…..there r days where i can barely function due to the headaches that i get Thanks again:):):)

  2. ildikobrown says:

    You are not imaginging the headaches, I also find myself crippled with headaches. I sadldy, have just learnt to live with them. It is my partner I feel for, who doesnt know how to help me. Wish there was a cure or solution at least for the headaches. They really can run you down…

  3. Beth Boberg says:

    A Mother’s Plea
    Like it? twodogsandacat@msn.com
    What is a mother to do with her two month
    old daughter; cuddle her and care for her I
    guess. My mother, her grandmother, discovered
    that she had hydrocephalus; and now my baby
    is in the operating room.
    How is a mother to react; my baby in the
    hands of doctors who are installing a shunt
    to drain excess fluid. It’s like lightning
    striking my heart. I can feel her pain as I
    can mine. I hope they can save my baby.
    When is a mother to cry, and think that there
    is hope for her child. Now I am pleading,
    “Oh God, why me, why her?” Then a doctor came
    to me and said that she still may live. A ray of sunlight
    filled the room; it knew I would see her

    A poem by congenital hydrocephalus patient Beth Boberg copyright 2004
    written as a teenager at age 17 in 1988, from my mother’s perspective.

  4. RLudlam says:

    I have headaches a few times a week that do not seem normal due to the type pressure but I am 75 years old and after several years of not knowing what was causeing the symptoms of hydrocephalus and being incorrectly diagnosed with other problems the headaches are minor. The Shunt saved my life and I am still getting better, working every day and shooting sporting clays. I got lucky and found the right doctor. Do not give up and be sure your are diagnosed correctly.

  5. Dianne says:

    So sorry to hear about this. My 14 year old is having headaches daily. I am not sure if I should bring her in to see the dr. since she has no other shunt malfunction symptom. How do you deal with them?

  6. ellaflynn says:

    I have hydrocephalus but do not have a shunt. I have severe headaches that last for a long time. I had migraines when I was in my 20s and early 30s–is this what I am now having or is it because of the spinal fluid on the brain?

  7. Charlene says:

    I had headaches out of the blue, they last 2 weeks .All day and all night.Finally went to see the doctor. I checked for a brain tumor. I got diagnosed with hydrocephalus. I dont want a shunt. I’m supposed to get my tummy tuck soon. My headaches take a week off then back on again. Its a pattern. Do I really have to get a shunt or can I get my tummy tuck first!!!

  8. amandagarzon says:

    This is a question best answered by your neurologist. S/he should be able to do a full assessment to determine if it’s build up of the CSF or a migraine condition. For individuals with hydrocephalus who are not shunted, we recommend that you really understand your body and know the symptoms of CSF build up. While many individuals live without shunts, there are times where the fluid can fluctuate and there may also come a point in your life where you do need to undergo treatment for your hydrocephalus. Again, only a physician can answer that. Which is why we also recommend that you build the best relationship possible with your medical team. Here’s a great fact sheet on just that: http://www.hydroassoc.org/docs/FactSheets/FactsheetAssertiveMember.pdf. Please feel free to call our support line if you’d like to speak to someone specifically about what you are experiencing. We’re always here for you! 888-598-3789.

  9. Andrew Maxwell says:

    I have had a headache ever since I had a lumbar puncture some 4 years ago. This may sound far-fetched but it is totally true. I have tried/been prescribed everything from morphine and Tramadol to herbal and yoga, with little or no improvement. I have not had any shunt operations as I do not have any of (Hakim’s) the triad of symptoms – affected gait; urinary incontinence; dementia. However, since the first of many lumbar punctures I have had a constant headache. The headaches are now only a third of my problems: my depression and fatigue are really hard to deal with. Being tired and despondent all the time doesn’t only depress me, it makes everyone around me – who doesn’t know too much about my condition – think that I’m just a miserable person. And, I don’t want to share everything with everyone regarding my condition.

    I cannot see any advantages of me having a shunt procedure, but the alternative is…pretty miserable.

    Hong Kong

  10. Steve says:

    I am 68 years old. Shunt implanted 2 yrs ago. The setting has been adjusted 3x. It started at 1.5, changed to 1.0 and then to .5. At .5 (a year ago), I was feeling great. Almost normal — walking and balance had improved considerably. There is no question whatsoever that this surgery has been great for me.

    However, for the last 5 months, I’ve had a bit of a “fall back.” My walking is not quite as good as it was a year ago and I’ve developed an overall dull headache that comes on at the end of the day — esp. if I’ve been working or if I’m fatigued. It’s not severe — but it makes me not want to do anything that involves concentration. I don’t know whether I should do anything or just let it go.

    I have taken 1 tablet of tylenol with codeine when the headache comes on. It seems to relieve it within an hour or two. On the other hand, I just read on this website to NEVER take a narcotic for this condition. So — now what? I can take nothing and probably get by, but it’s nice to have the relief.

  11. Ann Marie Diana says:

    my daughter is 43 yrs old and was first shunted at 4 wks of age secondary to a bleed at birth. She was only 27 wks gestation. She has had multiple shunt revisions most occurring by age 9. Her last revision was in 1995. In October she started having severe headache that lasted for almost 3 wks. She was unable to function on a daily basis. She had a work up for shunt function that included a ct brain and shunt series. These studies were negative for malfunction. She was placed on inderal ER 100mg. She seem to be doing well until the week prior to Christmas she had a 3 day HA. She was placed on a 3 wk course of Celebrex. She was better after the 3 days but not sure if the inderal and Celebrex are a coincidence. All I know is these headaches are debilitating. Any help is appreciated. Adiana


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  1. [...] Hydrocephalus | It’s a Real HeadacheOct 8, 2010 … Wish there was a cure or solution at least for the headaches. They really can run you down… Beth Boberg says: November 19, 2010 at 5:37 pm … [...]

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