Hydrocephalus take a number

Hydrocephalus take a number

Earlier this week, my Hydro symptoms reared its ugly head. I woke up at 4:30 am with a throbbing headache, mainly in my eyes…I was miserable and felt very lethargic.

I made it through work that day and hoped it would ease up. Lasting all day with constant nausea and dizziness, I was only too happy to put my head on the pillow that night. By the time morning came, the pain had not subsided and was still wreaking havoc inside my head. I was worried…”What was this and why was I feeling this way after such a long time?” A question, I did not have a ready answer for. I knew my faith had been lost in the medical system and there was no way I was going to waste my time with another Emergency room visit. Somehow though, I had the nagging thought “What if this is my ETV?“…

There’ll always be that nagging thought…no matter how much I want to believe that I am OK (whatever that is).

I had a thought to get my eyes tested because I knew if my pressure was raised, they would pick it up. I remember reading in one of the Hydro groups that someone had their Hydrocephalus diagnosed after having one done. I figured this was the best option since I knew the visit to ED would be a fruitless exercise of death by morphine (with my spirit being killed slowly due to not being helped effectively). I slept with my pillow propped up that night in case it helped with the flow of CSF.

The Wednesday morning early, I went to my appointment and even though by this time, the headache had eased up to a bearable degree, I figured it was still worth the visit. My pressure was high but not high enough for the optometrist to warrant further investigation. However, this was a sure indication to me that 2 days ago, when my headache started, my pressure very well could have been high enough to be a cause for concern. The thing, however, was that we were booked to fly out to Brisbane the Friday morning early (Christmas morning). I got a prescription from my GP for some Codeine (a backup in case of a Hydro headache) and I told my Hydro to take a number.

My family and I had been planning this holiday for a while and there was no way in hell I was letting my Hydro put a damper on the festivities. I learnt my lesson well the last time we were here and started drinking plenty of ice cold water. At the first sign of a headache, I popped some painkillers and even found going for a swim, to be not only relaxing and refreshing but good for my headache too.  I just don’t give it enough time to breed and grow into something I despise. I sleep when I feel tired and (touch wood) my hydro hasn’t been a problem for me…yet.

This time of the year and especially where we are now is all about quality time with our family. (My brother and sister-in-law and their kids). My soul longed for this time for so long and there’s no way I’m going to give Hydrocephalus the upper hand. I know I can’t control it with a magic switch but I can make sure I do everything from my side to ensure I have a good break. When the new year comes, and we’re back in NZ, I will face whatever I need to. I plan on getting myself checked out and making sure my ETV is still allowing a good enough flow. I hate the uncertainty, I hate not knowing and I hate being a slave to my Hydro.

This is the reason why…you can take a number Hydro and get in line. I’m with my family now and ain’t nobody got time for your shenanigans!

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!

2 Comments

  • minionmayhem514

    December 27, 2015 at 6:42 pm Reply

    I hope everything is ok. I can’t wait until my daughter is old enough to tell us if she is having issues.

    Side note: when you got your etv, did you have a small bubble near the incision site? If so, how long did it take to go away?

    • skyewaters

      December 27, 2015 at 7:46 pm Reply

      Thanks, I hope so too.
      I feel a few bumps and dents. It’s been 6 years since my last op (ETV being the last one). And, it still feels tender to the touch as well. Luckily my hat covers any sign of what’s underneath, though nothing’s grown on the actual incision site.

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