Hydrocephalus : Do you ever feel like you’re jinxed? Well I do…

Hydrocephalus : Do you ever feel like you’re jinxed? Well I do…

It feels as if every time I decide to have a positive attitude and WILL myself to feel good, it gets turned upside down.  I started off the new year on a positive note and even posted this in some of the Facebook groups.


Simply because I want us all to have a year of good health (I know, that’s probably asking a bit too much)…yet, I was hopeful at the time.

It’s the 4th of January and every day since the clock struck and changed to 2017, I have seemingly been doomed to fail in my quest.

I’ve been having terrible nausea and dizziness including the same weird feeling at the base of my head from time to time.  Nausea so bad I feel like I’m on the brink of vomiting but don’t…Dizziness so bad, I feel like I’m going to pass out but don’t…My head just keeps spinning. It doesn’t matter if I’m standing or laying flat on my back.  It’s really bad this time and I don’t know why it’s happening. I’ve found myself literally praying that I would just fall over and pass out until it’s completely gone.

My brain hasn’t been able to switch off (most nights), which normally leads to late nights/early mornings of going to bed and sleeping late. (Thankfully I’ve had the last few days off and was able to “catch up on lost sleep” – If that’s even possible). However, today is back to work for me and I feel like a heap of crap…tired, nauseous and dizzy.

The dizziness doesn’t feel normal to me though feeling tired all the time does. But.., with my current situation what options do I really have?

I know going to the GP won’t get me anywhere. I know going back to the Neurosurgeon, because I “feel” something is just not right, is a pain in the backside. (I’d rather have the literal pain than go through that again).

Also, the fact of the situation is that I have nowhere to go for help. It’s scary, frustrating and makes me feel extremely helpless. I want to scream but…there’s no point.  I suppose wanting to start the new year off on a positive note, with all its good intentions, was a noble thing. I would have liked my first post of this new year to be something upbeat and positive, encouraging to others even.  Yet, Hydrocephalus is not a condition that affords us that kind of luxury….

The reality of it is that no two seconds are the same (that’s no exaggeration). We take each day as it comes and never really know what the next will bring. Let’s see how long these symptoms last…I can’t guarantee that I’ll be in the best of moods or have the best attitude at this point in time. I’d like to think that it’ll all get better and not think about the condition too much. It’s exhausting trying to be positive all the time, so this year, I’m giving myself permission to have as many “down days” as my body requires.

With that said – Jinxed or not…the positive me will shine through again…if only to give Hydrocephalus (or whatever forces are against me), the middle finger ?


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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!


  • Anonymous

    January 4, 2017 at 4:46 pm Reply

    I also have Hydro, but rarely get what you’re describing here. It actually sounds like Vertigo to me, and there are drugs for that. “Antivert” comes to mind, but I’m sure there are more. Perhaps your Neuro could try you on one of those drugs to see if your dizziness goes away. Sincerely, Bill (3 shunts, 2 brain hemorrhages, etc.)

    • Skyewaters

      January 4, 2017 at 6:40 pm Reply

      I don’t have a Neurosurgeon Bill, which is why I wrote what I did. Also, the medical system doesn’t work and more so, I’ve been fighting an uphill battle. Quite honestly I hope you’re right and it’s only vertigo. But, I’ve been through enough to know better and not dismiss the symptoms.

    • Kelly Varga

      January 5, 2017 at 1:14 pm Reply

      Dizziness was the ONLY symptom I experienced before a doctor ordered an MRI showing a huge “butterfly” of fluid in my brain. My ventricles were really big! The dizziness was very specific, though. It didn’t feel like the room was spinning or that I was rocking on a ship. It felt like a mold of Jello was jiggling in my brain. It went away after I received my first shunt and came back when those first three shunts failed along with the other symptoms of headache, nausea, vomiting, double and sunset vision, short-term memory loss, and coma. I didn’t experience the dizziness at all for almost 13 years after my ETV. I wasn’t convinced the three-week headache I had last year was caused by a failed ETV until I started feeling that mold of jello jiggling dizziness feeling. Soon after that came the nausea and vomiting and double vision and worsening headache. And since my ETV is still partially open, the symptoms never got worse than that, but I’m definitely shunt-dependent now.

  • Kelly Varga

    January 4, 2017 at 1:40 pm Reply

    Oh my dear friend! You know that i know these feelings so well. I hope your crapiness can simply be blamed on the weather or global warming or the alignment of the planets… but if not, I hope you will find someone who will listen and be in a position to help you! Our family is praying for you!

    • Skyewaters

      January 4, 2017 at 6:35 pm Reply

      Thanks Kelly. I appreciate your prayers. Sometimes I wish I didn’t know that you know them so well. I don’t think it’s one of the main reasons why I’m feeling the way I do.

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