Hydrocephalus: Vision loss is scary and Migraines suck!

Hydrocephalus: Vision loss is scary and Migraines suck!

My central vision blacked out on Christmas Eve, while working, sending me into a bit of a panic. People’s faces were reduced to half an image and text was darn near impossible to read! I smiled at the receptionist on my way out of the office, whilst freaking out inside. I decided to step away from my desk and take a walk along the Brisbane river, which is a few streets away from our office. Thankful to Cindy, fellow Hydro sister for being a support when I needed one, as we chatted!

Brisbane city
Story bridge

Scary situations are best faced with people who understand and can empathise…

I’ve had this happen a few times before and it certainly is an unnerving thing to experience. Exactly why this happens, is still unclear to me and quite frankly, I lack the appetite to pursue an answer. It affects both eyes regardless of closing one or the other. My vision returned to normal a few hours later, with no head pain, which I anticipated. I assumed all was fine.

My 3am wake up annoyed me to no end, especially as it happened a few nights in a row. Undoubtedly, this just added fuel to the fire of pain I.e lack of sleep, headed my way.

Then, on Christmas Day, the headache started and hasn’t eased up yet. The irony didn’t escape me as I wished all my fellow Hydro family a pain and surgery free, Merry Christmas!

I just took a dip in my neighbour’s pool, hopeful that it would help…nauseous, lacking appetite, energy and sleeping most of the day away. This sucks!

Migraines are probably the closest explanation and description I can get to, to a Hydro headache. They mimic each other as they toy with you! Assuming that this is anything more than that, right now, is just something I cannot entertain. The uncertainty never leaves you. The constant asking of; “What if..?” Doubt creeps in at every turn. Stress, worry and anxiety are but a moment away…sigh!

But, I’m pushing through it all to give some time to my family. It is Christmas after all!??✨


  • Lesli Chinnock Anderson

    December 26, 2020 at 8:38 pm Reply

    I, too have had some temporary vision loss. I think it is connected with my hydrocephalus, regardless of what science has to this date figured out. Even my ophthalmologist leans that way in his thinking. Merry Christmas, anyway, Skyewaters, and may you and your family have a healthy and hopeful New Year!!

    • Skyewaters

      December 26, 2020 at 10:40 pm Reply

      I’d be lying if I said the thought hasn’t crossed my mind. I’m still contemplating if I should go back to the Neuro Ophthalmologist I saw last year, hoping he would be able to pick up any changes. But, it’s a bad time of the year and I need to build up the courage to go down that rabbit hole again? I hope you find some answers, if you do, please share.
      Merry Christmas to you and your family too! I pray the New year is a good one for you all?

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