Hydrocephalus: ETV Failure Guinea Pig

Storm

The past weekend was one for the books.  I had another episode of sleeping the days away.  I was going to write this post with a morbid feel to it…because that’s how I’ve been feeling the last few days.  Then, a little while ago, I decided to hell with it!  I won’t.  Because, doing so would be like saying I’m giving up.  Doing so, would mean that I have given up on myself and refuse to fight.  I might not be able to eradicate this condition from my body but I sure as hell can choose how I am going to react to whatever it throws my way.

On Friday night, I was tired…more so than normal.  It was a long and hard week, so I wrote it down to that.  Also, my 5-year old daughter is still getting into bed with us and delivering some much unwanted sleep disturbance.  Therefore, when I woke up on Saturday morning not because my body had, had enough sleep but because I had a pulsing throb in my head…I knew (before opening my eyes) it wasn’t going to be a good day.  I however, did not expect it to be a repeat of my previous occurrence…as well as this time…

Needless to say, I slept all day on Saturday, Sunday and most of Monday (thankfully a public holiday).  My body rebelled against any form of housework.  I just about managed to shower and get back into my PJ’s.  Taking comfort in the solitude of my bedroom after going upstairs, just meant sleeping in my sons bed or sleeping on the couch…purely to be in the presence of my husband and kids.  I feel bad at these times because it feels as if sleeping is taking up the quality time I should be spending with them.  However, I literally cannot control it and no matter what I do at this time…my eyes refuse to stay open.  Brain tired and limbs refusing to move, I managed to skip lunch and dinner and with the odd cup of tea or glass of water, nothing else passed my lips.

My head was spinning and at least the headache was bearable and didn’t last too long.  I remember popping some Tramadol but nothing major, I’ve had worse.  I was so nauseous and feeling terribly seasick, just moving an inch made me want to hurl…I never did though.  Added to this, I’ve had a nagging little feeling at the bottom back of my head, just behind my ears, which throbs from time to time.  It’s more annoying than anything else.

Based on my previous experience I refused to subject myself to a visit to the Emergency room and thought it would just pass.  However, it’s now 6 days later and I’m still not feeling myself.  I’ve managed to get through work…just…and the only difference this time is that I am unable to concentrate fully on work (this is new).  I feel as if I’m struggling a bit and feel as if nothing is getting done.

I’m frustrated and more than this, I will admit…I’m scared.

OK…that’s where the morbidity stops!

I’ve decided that it’s no use worrying about this.  What’s my major concern? (You might wonder).  Well…I am growing aware that this is becoming more frequent and since I was told there’s a possibility of slipping into a coma, I’m seeking help.  I’m patiently waiting for a date to see a Neurosurgeon via the public health system.  I realize that this is going to take time and I probably won’t see him for a few more weeks…months even.  It’s not within my control…  All I need is confirmation that my ETV is still functioning as expected and that these sleeping episodes aren’t anything serious.

I haven’t experienced ETV failure before but I know what symptoms to look out for.  I am going to regard myself as a guinea pig to see where this leads to, for anyone curious enough to know or who possibly has an ETV as well.  From my interaction with others who have actually had these failures, I certainly have reason for concern…only time will tell.  One thing I know for sure, if asked whether or not this is affecting my Quality of life again, my answer will definitely be YES!.

I’m left wondering if it really is such a good idea to disregard my symptoms above if they are void of vomiting and persistent headache.

I’ll keep you posted as best I can…

 

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17 thoughts on “Hydrocephalus: ETV Failure Guinea Pig

  1. “I too have had a headache now for 8 days. I have discussing with my family what we should do if it doesn’t go away in a month. ….one week for us is nothing. One month a pretty good sign. I have nausea almost everyday at some point of the day, so hard to tell. Thank you for sharing. …i believe that when we are in chronic pain and worry it’s hard not to be morbid….” – Angelica Hughes-Metcalf

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    • Thanks Angelica😊
      It’s those discussions that make me cringe because in the end, it might mean “Are we ready for me facing another operation”. I also find it hard to decide if it’s serious enough to act on and then find myself making up some other excuses of what could be causing me to feel the way I do. And, all the time the clock is ticking😏
      I hope your headache eases up. Playing the waiting game is no fun either. That’s what I told myself I’ll do after the first sleeping episode last October but when it happened again in December, it peaked my concern…then now a few weeks later. How can one not be worried? 😔

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      • “Prayers! The waiting game is no fun. I also agree, at what point do you worry. What if the symptoms are from X,Y, and Z. I hope your headaches go away soon.” – Haylea Lynn Blank

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  2. “Hi celeste. I’ve recently been having episodes, never experience before until i started to take alot on. Learning to drive, uni, and raising 2 children on, one of my kids also has adhd. I thought i was managing quite well on my own, until these episodes started. I have a vp shunt and behind my right ear i feel the shunt pulling and hear a click in my neck whn i move my head. I like your self am waiting to get this checked out. My shunt is 29 years old. Worrying and at the same time annoying. I find im sleeping alot of the time ( whn i can) i never feel refreshed.” – Vicky Griffin

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      • Last October I slept a whole weekend away and only woke up to go to the toilet. I also had headaches that wouldn’t go away and my body felt like it had been sapped dry of all energy. I didn’t vomit but had extreme nausea and just a general unwell feeling. Recovered after a full week of this going on.
        I thought it was a once off thing but then I had the same experience 2 months later and then again a few weeks after that (this past weekend). I’m starting to wonder if the sleeping is something to be concerned about in terms of the ETV hole closing.

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      • Thanks. Its just confusing since I haven’t had a closure before and am a bit worried about the sleepiness. Hopefully I’ll get an appointment soon so I can move on.

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  3. “I’ve had an ETV when I was diagnosed nearly 8 years ago with obstructive hydro. I was 28 at the time and had always had hydro without any problems. I was a lucky lad until I nearly died and had the emergency ETV. Fingers crossed I’ll not need the ETV redone and the darn thing will stay open but I’m painfully aware that it’s not a cure and is only a treatment. It’s hard some days and tonight my head is spinning a bit and have bad pulsatile tinnitus. I try to crack on and be a good parent to my two daughters without my fear over my health tarnishing things but some days are rough x” – Richard Coberman

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    • I certainly can appreciate how you feel Richard. It’s not easy…having to function as a normal human being and especially being a parent. My kids just know me as always being tired and wanting to sleep. For your sake, I hope it does stay open and that you don’t need another operation.

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  4. Pingback: Hydrocephalus: ETV Failure Guinea Pig…continued… | @skyewater33

  5. Pingback: Hydrocephalus: ETV Failure or not…time will tell | @skyewater33

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