Hydrocephalus: How seriously do you treat your “triggers”?

Hydrocephalus: How seriously do you treat your “triggers”?

Some “triggers” aren’t necessarily recognised as anything serious by the medical professionals we deal with.

If this is the case, are we meant to ignore them too?

Take for instance weather changes such as barometric pressure. Even as people with Hydrocephalus, it doesn’t affect all of us in the same way or even at all. Stormy weather or extreme heat, it simply doesn’t affect some. Not in any way.

It makes me wonder, when you have a consult with a Neurologist and/or Neurosurgeon, do they acknowledge this as a “trigger“? Or, do they simply brush it aside as if you’re smoking something? Most times I’ve felt this way. But, the weird part is, when you speak to (some of) those with Hydro who are affected in the same way, you don’t feel half as dumb for mentioning it. Personally, I would benchmark my symptoms on someone who has actually been diagnosed with this condition (who can actually relate), as I feel they have more credibility.

Alcohol would be another one. Some can handle it fine and others experience the symptoms from hell when they partake. Most doctors would rather have you abstain anyway because alcohol just brings on so many other negative effects as far as the body is concerned. (Admittedly, I’ve had a few drinks whenever I have a, IDGAF moment – Meh! Truth be told, it affects me negatively when I have a bit too much but, there are days when…Well, we cope as best we can. No judging!).

The way in which our symptoms are either taken seriously or, more importantly, dismissed, will determine whether or not we relay them to treating medical professionals, going forward.

Is it a good idea though to withhold this information…?

Just because your signs and symptoms don’t fall within the remit of someone else’s, doesn’t mean you should exclude them as important. If it affects your quality of life, then it deserves mentioning. Also, just because others with this condition haven’t experienced it the same as you, doesn’t make them right and you wrong. It’s not a competition after all nor can comparisons be drawn between us.

Remember, same condition, different physiology and anatomy.

Even prolonged episodes of sleeping, something (in my case), which has been written down as stress and being an overtired mother, are disregarded. However, this is something listed in the signs and symptoms to look out for, when there’s a complication. One could argue the point and ask, according to whom? But, having experienced the listed signs and symptoms one too many times, I can easily sway in favour of erring on the side of caution.

Even waking up during the early hours of the morning…an annoyance which leaves me without energy to face the day. A headache of note at the end of it and a body screaming for rest…

Disregarding it, is a luxury afforded to those who are not personally affected by this condition. They get to ignore it, they get to overlook it, they get to brush it aside as a one-off occurrence and something explained by other life forces.

Oh, how I wish I had that luxury.

Like looking at someone who is financially worry free, wishing you had what they had – money to solve all your problems. Winning the lottery would undoubtedly be something most people dream of. Having Hydrocephalus, leaves me wanting for so many things…not only for myself

I think acknowledging the “triggers” you experience, is important. I would definitely encourage listing them to whomever you consult with. If at the end of it you feel as if you haven’t been taken seriously, take it from someone who has been there one too many times, find someone else. It only takes one person to listen to you and take what you are, or have experienced, to heart and do something about it.

For myself, the “triggers” I’ve experienced and the symptoms they cause are not something to ignore. How can I possibly look myself in the mirror every day and not fight to be heard? It’s hard when the battle you’re fighting seems lost but remember, you are the most important person in your life. The one who deserves recognition for the battle scars you wear.


  • Bethany Bacon

    October 14, 2019 at 3:07 pm Reply

    Thank you for once again sharing from your heart. It is a true encouragement to me knowing I’m not alone. I think I’ve mentioned this before, but there’s no one in my circle of friends/family/acquaintances who has Hydrocephalus, and with these recent years (mid-October 2016 – present) having been and continuing to be difficult, I have longed to know someone with whom I could connect that can relate. Thank you again for your posts!

    • Skyewaters

      October 14, 2019 at 9:43 pm Reply

      Hi Bethany. Thank you for your comment.
      I know what you mean about feeling alone in that aspect. Feel free to reach out any time💙

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