Hydrocephalus:  It scares the crap out of me

Hydrocephalus: It scares the crap out of me

A few times now, I’ve had vision disturbances.  Today was much like some of the other times.  After initially freaking out, I reminded myself that it may just be a migraine starting.  The Ophthalmologist I consulted with last year, helped me recognise the signs.  But there’s no real migraine which follows.  All I have, is a slight headache which passes without pain relief (sometimes), that’s it.  The visual disturbances last anywhere from 15 minutes to just over an hour.  Part of my vision is blocked out and I can’t seem to focus on any given area.  I’ve noticed a few fuzzy patches, some blurry spots and then followed by shiny squiggly lines which appear on the sides, continuously.  Trying to figure out if it’s just one eye or both feels impossible.  Reading something on a screen or on a page is like trying to shovel crap uphill.  I found myself getting extremely worked up because no matter how much I blinked or dismissed it, I just couldn’t see.  I tried sitting outside to get some fresh air and even laying down on my bed for a few minutes, with my eyes closed but, nothing helped…

These occurrences freak me out more than anything, because I don’t quite know what’s causing it.  This was the 2nd time in a space of a week.  I had a brief outburst in front of my husband, shed a few tears out of fear, shook it off and found something to distract myself.  Something, which didn’t require me to have full vision and I was good to go.  The weird thing (or maybe not so much), is the fact that as soon as the visual disturbance of today passed, I simply went about my day as if nothing happened.  This little fact did not escape me, nor did it go unnoticed.  I silently checked myself with a little inner pep-talk about not ignoring my experience but, what good is that anyway?  There’s not much I can do about it, is there? 

I finished off a report I had been struggling with for far too long and felt accomplished once it was done.  In all honesty, struggling with something, taking longer than I know I should, is hard for me to deal with.  It’s not that I’m being hard on myself either, it’s more the fact that I’m fully aware of the length of time it takes me and how I struggle cognitively, that gets me down at times.  However, I thanked my brain for finally getting there…a bit overdue but in the end, I did.  And then, as if that wasn’t enough drama for the day, my tummy pain returned with full force.  I just let the pain take over, powerless to stop any of it and floated on the wave of excruciating and debilitating pain.  My endoscopy earlier this week revealed a lesion (probably nothing, but the test results should confirm as much, in a few days’ time).   One thing at a time…

With the vision issue taking 1st prize today, the thing that bugs me most of all, is knowing that any kind of pressure build up in my head could put strain on my optic nerves…This line of thinking, is at the top of the list, once everything else has settled down.  Heeding warnings of “…if left untreated could cause blindness” does a number on the psyche.  Maybe I’m just being my paranoid old self?

I wonder how long I’ll go with “Maybe it’s just stress-related…” 

I swear, if I had to choose, I would much rather go skydiving (one of my worst fears being heights), than having to deal with all these unknowns. 

There are two things which scare me to the core, which doctors have mentioned before: 

  1. The possibility of losing my eyesight and 
  2. Having seizures

Bet you thought I’d say another brain operation huh? Well…maybe…

Thankfully, I haven’t had any seizures thus far.  I’m also not too convinced this will ever happen but, who knows?  I’ll admit, the day a doctor asked me, “So tell me, how many seizures have you had?”, I felt a bit shaken up.  He left me wondering if this was something that I needed to be aware of.  Something I should expect as part of my Hydro journey…It even went as far as causing me sleepless nights at the time, thinking it would happen while I was driving with my kids in the car.  Oh, the myriad of scenarios which played out in my head, leaves nothing to be desired.  Touch wood, it hasn’t happened yet.

As for the “losing my eyesight” part, this is another big unknown for me.  Obviously, it’s not something I can just brush aside nor is it something I feel comfortable knowing.  It’s always in the back of my mind, much the same as knowing my ETV can and probably is failing, meaning more brain surgery. 

It lurks like a predator, waiting to pounce… 

Living with a condition like Hydrocephalus, you face many unknowns.  Much of what you will face, no one person can prepare you for.  Some have it easier than others but that doesn’t mean their ride is smooth all the way.  We deal with what we’ve been given and we handle the situation as best we can.  There is no right or wrong way to do Hydrocephalus because this is a condition, which requires you to just go with the flow…literally & figuratively!

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  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!


  • Karl Rothko

    July 19, 2019 at 7:44 am Reply

    I’ve had pretty much everything, including seizures. but not visual disturbance/ loss from hydro. Any visual issues have arisen from other causes. Toxoplasmosis where the eyes have been eaten into, resulting in blindness in one eye, and near blindness in the other. The toxo caused the hydro in the first place through aqueductal stenosis. If you are pregnant, do a toxoplasmosis check pronto.

    • Skyewaters

      July 20, 2019 at 11:14 pm Reply

      Definitely NOT pregnant! However, someone suggested it may be migraine fortifications. Sounds very similar but with some added symptoms. I’ll look into getting it checked out this week and hopefully know better. Thanks for your comment though Karl💙

  • Judy Garner

    July 19, 2019 at 2:23 am Reply

    Sky, your writings have been such an inspiration to me. You have put into words exactly what I feel on the inside. I want yo just live a normal life, I’m 58 was diagnosed at 17. I thought I would just live my life like everyone else. God had different plans. 19 different brain surgeries has left me with short term memory loss, and feeling very lonely. I have days I just want to cry but I put on a show for my kids and family. Thank you for spelling it all out so I don’t feel like I’m the only one feeling these feelings.

    • Skyewaters

      July 20, 2019 at 11:07 pm Reply

      Thank you Judy. This is one of the reasons why I have this blog. So others, like you, don’t have to feel like you’re alone on this journey. In saying that, it serves the same purpose for me so, thank you for your comment💙

  • Jean Hitchcock

    July 18, 2019 at 2:54 pm Reply

    I am a lifelong Hydro Pioneer. I used to think that I had a hard time with my situation, until I started reading of others.
    Granted I haven’t had an easy time with it. However, as I read almost on a daily basis, I have found that we each have our unique experiences with it.
    God has given it to us. We are given this challenge. We live on with it, God bless us all.

    • Skyewaters

      July 20, 2019 at 11:04 pm Reply

      I couldn’t agree more Jean. Same condition but different anatomy. I too am very aware of how different my experiences are to others with Hydro. God bless you too💙

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