Hydrocephalus : What’s your weather triggers?

Hydrocephalus : What’s your weather triggers?

Whether the weather be hot, whether the weather be cold, whether the weather, whatever the weather, whether you like it or not…

Anonymous

A few years back, my family and I visited our relatives in Brisbane, Australia.  It was extremely hot and the first week I suffered to the point where I thought I was literally going to die from the heat and the effect it had in terms of my Hydrocephalus.  I remember having constant severe headaches that did not respond to pain medication or the migraine kit I got from the local pharmacy.  I vomited quite a few times and just felt generally unwell, as you do when you have a Hydro episode/shunt failure.

Needless to say, when we went back for a 2nd visit, I was more than a little apprehensive having to face the same circumstances.  However, I knew to stay cool by going for a swim in the pool and, very well hydrated, which seemed to alleviate some of my symptoms.

Wellington, New Zealand does not have the best weather, majority of the time.  However, Summer looks like it has definitely arrived to stay for the duration of its term.  The heat is definitely not something we are used to feeling on a daily basis, as we currently are.  Temperatures over 30 degrees are just not the norm and usually they are overtaken by the bad weather we’ve become accustomed to.  Living here for the last (nearly) 6 years, I cannot say that high temperatures are something I’m used to.  Don’t misunderstand, I love warm weather as opposed to cold but prefer the cold, miserable weather (especially while being in bed with a good book or movie).  I’m not complaining…on the contrary, I’m loving the warm weather because having the sunshine for once, has a Positive effect on my soul.

So getting back to the topic of my post.

Extreme heat is one of my triggers, as identified during my time in Brisbane.  Because of this, I’m feeling a little anxious in regards to how the current climate will affect my Hydro.  It’s not like I’m living on edge because of it but rather that I have a heightened awareness to be on alert.  Secretly praying that it doesn’t get to the point where I need to seek medical attention.  (If you’ve been following my posts on Skyewaters, you’ll know how insecure I feel when it comes to medical care here).

If I had the temperature control in hand for the current level of heat, I most certainly won’t crank it up any more than the current setting.  If anything, I’d probably turn it down a bit just to ease my fear and anxiety.

I suppose if I had to compare the way I’m looking at things right now, it would be the same as when we, as a family, experience earthquakes.  At first, they scared the crap out of me because it was a new and unknown feeling.  I’ve become accustomed to them by now and find myself just briefly waking up (if they happen while I’m asleep) and just wait for it to pass, falling right back asleep.  We can’t control it but if a big one were to hit, we have a plan in place, supplies we hope will survive to enable our own survival (if at home when it happens).  If at work, there’s an emergency kit under each desk and I have my walking shoes if there’s no other way to get home.  (It would be damned far to walk but I would do it if I were put in that position).  The kids being at school, are trained from a young age and all schools have their emergency plans in place, which are practised from time to time.

Despite knowing the earth can literally open up whenever it decides to and, wreaking havoc is something you just learn to live with and accept, most people just go about their daily lives.  It’s a major event…right?

Similarly, this is what having Hydrocephalus feels like.  The same uncertainty, lack of control over the unpredictable unknown, being alert to any signs or symptoms and putting things in place in the event of an emergency brain surgery.  Sadly though, my family are not as on board with this possibility (or prepared) but likewise, they go about their daily lives with one difference…the possibility of me having further brain surgery is not in the equation.  Sigh…

I know some people with Hydro are affected by storms approaching or even rain.  Thankfully, this has not been the case with me.

What’re your triggers and what do you do to avoid them, if at all possible? More importantly what’s your attitude toward them and how does it make you feel?

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!

4 Comments

  • Hope E. Welker

    December 9, 2017 at 5:17 am Reply

    I’m very fortunate not to be affected much by weather, but I have recently become mindful again of just how bad my headaches once were. I was dx’ed with type 2 diabetes almost 2 years ago, and because of the way I have to eat, my electrolytes often become imbalanced, leading to faintness and a brutal headache. My current shunt is 37 yo, and I know it can fail at anytime, so the electrolyte imbalance headaches serve as a reminder of the fact that I have to be on guard, especially if they don’t stop with Propel and food.

    • Skyewaters

      December 9, 2017 at 8:33 pm Reply

      37 years is a long time with the same shunt. That’s awesome Hope!
      I completely understand what you’re saying about being on guard. Something sadly those around us, sometimes just don’t get.

  • Richard L Fry

    December 7, 2017 at 3:09 pm Reply

    You cover a lot in your question, and I can answer a couple. I’ve had a shunt since the age of 5, and after second shunt at age of 10, I have noticed more pain around the incisions. Especially for a couple months after, but that might just st be me. I just turned 59 in Mid November, and have had my current shunt since fall of ’01, after an episode where I had an exterior drain for 10-14 days. Earlier that year I had another revision with a mild stroke day after discharge.
    I have now gone 16yrs with this shunt. Prior to that another 16yrs from 77-93.
    As mentioned above, I had first shunt at age of 5, at 10 revision w/a cardiac catheterization to remove the first shunt after I dislodged and floated to that area!

    • Skyewaters

      December 7, 2017 at 7:06 pm Reply

      Thanks for your comment Richard.

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