Hydrocephalus : When a headache plays chicken with you…

Hydrocephalus : When a headache plays chicken with you…

Ever feel like the beginning of a headache is the same as playing the game of Chicken?

A few weeks ago, I had a lurking pain that started off subtly but like so many times before, had me wondering if it’ll turn into something more.  At times like these, I remain aware of the pain and am alert to every little change…be it an escalation in the pain, if it’s dull or sharp, and even when it starts throbbing.  The kind that resembles a drummer playing in a rock band with a constant “DOOM!DOOM!DOOM!”  But, with added pain beyond comprehension, head spinning and nausea escalating…

The thing I do most times is, make mental notes of the slight changes and how it progresses.  What side of my head the pain is mostly, how it affects my eyes if there’s any nausea and, what if anything, makes it better or worse.

I take pain pills and wait for the pain to either subside and if it does, I make a mental note of this as well.  If it doesn’t, well…let’s just say “I brace myself“…and wait for it (It, being all hell to break loose).  I know it’s gonna get bad if I end up hugging the toilet bowl one too many times and need to take the lead role as Dracula (complete with a bad mood, irritability and wanting to kill anything in my path) and, lock myself up in a dark room.

I’ve been very fortunate over the last couple of months…I haven’t had a bad episode and I remain eternally thankful.

Truth be told, I’m starting to wonder if maybe the surgeon was right when he alluded to the fact that I’ve been “cured“.

Oh…if only…

Ever heard the saying before, “You can’t take a knife to a gun fight“?  It’s the kind of fight one would surely lose.  Well…I sometimes feel like I’m the knife and Hydrocephalus is the gun…I just don’t stand a chance.  But, each time a battle goes down, it’s not exactly a luxury of choosing whether or not you’re going to partake.  You just need to go with it and see where the end result leads you.  It may mean that you end up at the ER seeking help because you are in serious trouble or it might mean that you take a day, or two…or a few to recover and get back to baseline.

Such is the life of a Hydro Warrior.

Have you played Hydro chicken?  If so, what’s your success rate been?


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Thank you for taking the time to read.

I blog about Hydrocephalus and Selective Mutism to give a voice to the millions of people around the world with this condition and disorder.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!


  • Chiari and Syringomyelia Support UK

    March 18, 2017 at 10:34 am Reply

    Thanks for sharing your story on the support group.
    If you’d like any of your experiences included in the collection of the many different experiences we’re putting together to help people with these problems let me know. Also if anyone who reads these would find the support of the group useful feel free to join everyone is welcome, not just UK. It’s become a lovely supportive community. Anyone with any neurological condition is welcome as are relatives and carers, the symptoms are all so similar. Reading your experience with hydro is so similar to what I feel with it, nothing worse than that throbbing headache and sickness that comes with it.

    • Skyewaters

      March 18, 2017 at 7:52 pm Reply

      Awesome! Working together to provide support for those who need it. Love the idea ?

      • Chiari and Syringomyelia Support UK

        March 20, 2017 at 12:50 am Reply

        Definitely the more support for people the better, it’s always nice to support others doing the same or similar if that makes sense ?Xx

        • Skyewaters

          March 20, 2017 at 7:54 pm Reply


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