Hydrocephalus hangover…

Hydrocephalus hangover…

Hydrocephalus had me on my knees last weekend(literally)

Saturday I woke up with a lightly beating headache. I opened my eyes and thought “okay…how bad are you gonna get?” The day passed by with little to no drama and no escalation in the pain. I was thankful at the end of the day…because I made it through unscathed.

We had a friend stay over that night.  He was only too happy to be playing games on the PlayStation with the boys as I retreated to the sanctuary of my bedroom. I went to bed at a good hour and didn’t even turn on my phone or laptop as I normally do…I felt exhausted.

The next morning, I woke up again with a headache lurking below the surface. The same thought from the previous morning popped into my head.  I got out of bed, made some doughnuts and coffee for the boys before they woke up…it was a good start to the day. My 5-year-old daughter had a play date at 10, which was perfect because it meant I had time to myself “Oh what to do? What to do?

Driving back home after dropping her, I thought “I’ve got a headache. I have no idea if it’ll get any worse but how will my husband know?” Besides, if it did get worse, I wasn’t sure if I’d be in a position to communicate as much.  It was a valid question. When I got home, I made a point of telling him exactly how I was feeling.  Within an hour, the beating escalated and I knew this was going to get ugly. I was nauseous and my mood started changing and not for the better.  I could feel myself becoming irritable at the most insignificant thing. I continued with my chores of cleaning up and doing the laundry, though I could feel my body slowly becoming lethargic and rebelling against movement.

The rest of the household were unaware of what I was silently enduring, playing games and totally oblivious.  Reaching for some Ondansetron, for nausea and Codeine, the strongest painkillers I have, I knew normal Paracetamol just wouldn’t be effective.  Also, Codeine makes you constipated and as the surgeon told me before, “You don’t need that kind of pressure” I would deal with the effects of it later…

I retreated to my bedroom yet again and sat on the bed.  Dizziness rising, pain increasing and nausea as if I were out on a boat on the choppy ocean.  I felt myself becoming hot and sweaty…lying down did not ease the pain or help my nausea.  Standing up didn’t help either.

My limbs felt weak and numb, moving even a finger caused my stomach to churn.
I went to the bathroom and hugged the toilet bowl like a long lost friend.  Though nothing would come…I knew this was all that stood between home and a trip to the Hospital.  My head was throbbing and I was hot…I put my cheek against the cold seat but felt too limp to hold myself up.  Closing my eyes, I sat like that for a while and eventually got up.  Holding onto the vanity cupboard, my head in my hands, massaging the pain and willing it to stop.  I started to cry because the pain was that bad, the nausea was unbearable and not knowing what the hell this would lead to…

Thankfully my husband came and checked on me.  He held me close and I just broke down crying “I can’t take this anymore…I’m scared…”  Being in his arms felt good because, for just a little while, someone else could carry the weight of all this.  He suggested I lie on the bed in a semi-upright position, placed a bucket next to the bed, in case I needed to vomit, and left me to rest.  I covered my head with the blanket as the darkness seemed to provide a different kind of comfort.

Later, when my daughter came home, I was only too happy for her to find a distraction in the iPad.  She’d jump onto the bed to give me the occasional tight squeeze, gentle kiss and whisper “I love you so much…because you are beautiful” (a few times in fact), as she normally did when I had a lie-down.  I couldn’t give her much attention or care especially not in this state…I barely had the energy to take care of myself.  I fell asleep a couple of times and would wake up every time my affectionate darling would come into the room.

As darkness came, I felt some relief.  Lying still and thankful that this did not end in a hospital visit.  I think the worst thing that could have happened is to be treated for pain and sent right back home.  In that case, I was happy to be right where I was.  I can’t say that the episode didn’t scare me, it made me wary of what could be causing this and if there is some underlying issue…BUT, that won’t get me anywhere so pondering about it, is a waste of my time and energy.  I have my instructions from the Neurosurgeon I saw, “a headache accompanied by vomiting…go to the hospital”.

A day later and my body still hadn’t recovered.  I felt like someone who had a bad hangover…but went to work nonetheless.  It took every bit of strength I had left to mask what had happened the day before and function as normally as I possibly could.  When I got home that night, I told my husband “My brain feels bruised…like it’s been in a fight“.

This is the scary thing about Hydrocephalus.  Not knowing what is causing these symptoms…is it closure of my ETV?  Is it anything serious and just how reactive do I have to be?

Well…it’s a couple of days later and my brain still feels slightly unsettled, like its floating inside my skull.  I still have moments of nausea and dizziness but my headache is gone.  My body is returning to normal and I’m even smiling again.  I know though, there will be another episode…I just don’t know when…



  • Ginette

    March 8, 2017 at 6:29 pm Reply

    Wow….I’m on my eleventh shunt. I had an ETV but it only lasted fifteen days. Anyway, I was headache-free for several months since my last surgery in September 2015, and then I started up with headaches that woke me up from a sound sleep. I had a pretty horrible headache last Saturday and couldn’t do anything but stay in bed in the dark. The entire time, I kept thinking the worst and wondering if my shunt is starting to malfunction. I took Tylenol with caffeine and Advil and tried to stick to those every four hours but I didn’t get any sort of relief until much later that evening. I didn’t see the point to going to the hospital because they’re woefully inept at dealing with this sort of thing.
    I appreciate your talking about what it’s like for you because it makes me feel less alone in this.

    • Skyewaters

      March 8, 2017 at 10:07 pm Reply

      Thanks for your comment Ginette.

      Wow back at ya! 11th shunt…

      I fully understand your concern about the headaches and your shunt. It’s one of the things I hate, not knowing and seeking help from people who have no clue about the condition.
      I hope you get a break from your pain.

  • lindakthelion2

    August 14, 2015 at 2:08 am Reply

    I can relate very well to everything that you have written. Hydrocephalus is definitely not an easy condition to live with. It has changed my life l00% and not for the better.sadly. Everyday is a struggle anymore and my once medically knowledgeable mind is now a jumbled mess. I struggle to remember ordinary things that I have routinely done for years

    • skyewaters

      August 14, 2015 at 2:20 am Reply

      Ever try explaining or describing the “jumbled mess” to anyone? I sure have and can’t even do that successfully. Good to know I’m not alone in this. Thanks for your comment.

      • lindakthelion2

        December 27, 2015 at 5:40 pm Reply

        I have. Sadly, I was a nurse for many years prior to diagnosis and getting shunted so it’s really difficult to seek help from my ex medical professional coworkers and not be taken seriously by them. They should know me well enough to know that I never complained about my health issues unless they become severe or unbearable.

        • skyewaters

          December 27, 2015 at 7:37 pm Reply

          I’ve decided not to add any more stress or pressure to myself by explaining or justifying things to others. I hear what you are saying and it’s damn hard to get the message across. Just keep doing what’s best for you.

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