Hydrocephalus: This is NO way to live…

Hydrocephalus: This is NO way to live…

I’ve had a few people say this to me. People at the end of their rope, dealing with pain and discomfort from living with Hydrocephalus, and some, living with more conditions/diseases on top of it all. I fully empathise and, in most cases, share their sentiment. More especially, today while I’m in the grips of a headache which reared its ugly head a few nights ago and hasn’t let go of my right eyeball, ear and arm. Grrr!

A few weeks ago it was a burning sensation in my brain, lasting a few weeks. An interesting conversation with my son, on my way to drop him off at school, got me thinking and wondering why I was feeling this. “If there are no pain receptors in the brain, why am I feeling like this?” His response, “Maybe it’s something else causing you to feel that way…and maybe you need to figure out what that is”.

I found this article interesting with a few things hitting home. Here are some excerpts:

“pain is a vital signal that warns of an injury or damage. And it sets natural mechanisms in motion to solve it. The way it does it is through a series of nerve endings that pick up a signal.

The name of these endings is nociceptors and they receive sensory information from the outside and inside of your bodies. They’re at the end of the axons of sensory neurons and can transmit it to the brain. Also, it can transmit information about mechanical, thermal, or chemical lesions in a matter of tenths of a second to the entire nervous system.

You might think that your brain hurts or that it’s going to explode when you have a headache. However, what you’re really feeling is the nervous tissues, meninges, blood vessels, and muscles around the brain.

These elements, which have nociceptors, can become inflamed, damaged, or dilated. Thus, they send an alarm to the brain that something’s wrong and lead to widespread headaches. In cases such as brain tumors or cerebral hemorrhage, in which there’s pain, it doesn’t really come from the brain. In fact, it comes from the pressure it exerts on the surrounding blood vessels.

However, there are other more serious problems that can cause pain. Some of them are:

  • Acute hydrocephalus or interruption of cerebrospinal fluid.
  • Very high blood pressure.
  • Infection of the brain or nearby tissues.

You must know when this pain may be due to truly serious causes so you can consult a doctor. Thus, medical attention is necessary when:

  • The pain interferes with your daily life.
  • It’s associated with vision, mobility, language, or memory alterations.
  • Is it worse in 24 hours?
  • It manifests with other symptoms such as fever, stiffness, and nausea.
  • The headache wakes you up and you can’t fall asleep again.

I’m not immune to these headaches though, they are “annoying” (for lack of a better word). Having been blown off so many times by medical personnel, I started trialling CBD oil a while back and even though I have no doubt it works to minimise the pain, there’s always a nagging feeling. 

What if all it’s doing is masking the signs of a bigger problem..? (A problem, seemingly all in my head (literally), and one doctors, seem reluctant to take on).

I decided that I would give CBD oil a try, during one of the end of my rope moments, and see how it goes, simply because I don’t want to trial anti-depressants or any of the other drugs which have way too many side effects for my liking. The negative effects I’ve experienced on a few of them are simply not worth it. So, I decided to take my care into my own hands, and do what suits me, as far as I possibly can. I have a plan in place with a neurosurgeon, should I get worse – thankfully. Just how much I like that plan or feel there’s benefit or not to it, is another story. But, it’s a backup and far better than I had a year ago or even 6 months ago!

However, I feel that I should stop taking the oil and let this take it’s course. I hear my friends voice in my head; “Why would you put yourself through that pain, just take the oil!”. She may be right but I feel like I need to go through this and not try to shut up the squealing pig, which is my brain, because it won’t stop.

Maybe I need to start listening to my brain…It’s just tiring knowing how hard I’ve already had to “fight” to be heard!

Personally, when I feel the pain and discomfort I’ve had for the last few days, I do an internal check and try to assess if this is bad enough to kick said plan into place. I know I’ve felt worse many times before but, that doesn’t mean this is a walk in the park. For all I know, it might just be referred pain from my C5/C6 degeneration. Regardless, I’m miserable, have a burning pain at my burr hole, lacking appetite/energy, nauseous and have constant throbbing pain that doesn’t ease up long enough for me to feel like I can go on. Yet, I find a way to push through while life continues, with work and family responsibilities. Even if that means using my energy reserves to stand in the rain watching half a game of my 10-year old’s hockey game while the percussion in my head continues and the ground beneath my feet feel like a choppy ocean. Thankful it’s the weekend and I can just crash on my bed, neglecting the cleaning till this wave is over. So yes, I would tend to agree that this is no way to live. 

Living with this condition, knowing it’s incurable and knowing that no matter how much surgery you have, there’s no guarantees that it will be your last. Some days I can be “OK” with that but, there are days when I just feel, it’s life “lived” slowly and painfully!

And, in saying that, I wonder…Is it any way to die..?

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!


  • Diane

    September 6, 2020 at 8:31 am Reply

    I got my diagnosis in 2014 at the age of 34 !
    Today, 6 years later, every day is a struggle…
    I love reading your blog, every word you say is so true ♥
    Tuesday I’m going to my neurosurgeon again and hope, something will change for me.
    Lovely greetings ♥

    • Skyewaters

      September 6, 2020 at 11:17 am Reply

      Hi Diane
      It’s good to know you love the blog 🙂 What was the cause of your Hydrocephalus? I’m sorry it’s been a struggle for you but understand how that can be. I hope your NS can help you with whatever it is that you’re going through.

      All the best!

      • Diane

        September 7, 2020 at 8:29 am Reply

        Thank you ♥
        No cause was found !
        First there was a pineal cyst and I had an ETV ( i don’t now the word in english, maybe
        “endoscopic third ventriculostomy” ? )
        But that was not the cause 🙁 and the pressure got worse.
        I have adjustable valves and we have been looking for the rigth setting since 3 years.
        I do not give up hope ♥♥♥

        • Skyewaters

          September 7, 2020 at 11:05 am Reply

          That must be very frustrating! Is the shunt still working? It seems a long time to try and find the right setting…I used to have a VP Programmable shunt and know what it’s like to not have the right setting or play around with it till you find one that’s just right. I empathise fully.

          • Diane

            September 10, 2020 at 9:16 am

            I think my shunt is working, i have a sensor that measures the pressure !
            But, no “dates”, no measurements…
            Yesterday my neurosurgeon forgot the measuring device, the same in February.
            It’s hard to take…
            He thinks it’s overdrain ( i think now it’s pressure ) and my valve is on the highest level ( since yesterday )
            If it stays that way, how I should cope with my everyday life ?
            Until now I could even work, but now it is impossible.
            But I think we all have similar problems ! ♥

          • Skyewaters

            September 11, 2020 at 8:40 am

            It’s very tricky by the sounds of it. I hope they can figure it out for you, especially if it’s affecting your daily life. This part, sadly yes, most of us with Hydrocephalus go through. It doesn’t make it right though. One of the reasons why we need better care and treatment.

          • IAN BORROWS

            September 11, 2020 at 11:34 am

            Hey Skye, glad to see your post. I am sorry you are having issues. It always slays me when a doctor you go to see forgets a critical piece of their equipment. One that is critical to be able to do their job and take care of their patients. I bet he did not forget to charge you for the doctor visit? Seeing that he did half the job, he should refund half the cost of the appt. Fair is fair! Especially important when appointment availability to see a NS is scarce and wait times are a lot greater. Maybe you could ask one of your kids, as some kind of an art project, to make him a daily checklist of things to remember to take to work! Seriously though, I hope you get answers for your issues. And fast!

          • Skyewaters

            September 13, 2020 at 12:34 am

            I agree with you and empathise with Diane!
            Thanks for your comment💙


    July 28, 2020 at 10:05 am Reply

    I can certainly liken and appreciate and yes, sympathize with you Skyewaters to what you are experiencing not only physically but also mentally and emotionally. The amounts of not only physical but also mental energy it takes to negotiate daily life and the daily tasks just to keep going are, on occasion so sapping and exhausting it really question your ability and willingness to carry on. We are traveling a road, oftentimes alone, without support or with a diminished support structure, basically having to perform as our own advocates, just to be heard. Then asking ourselves “Is anyone actually listening?” This is not meant to sound as a resounding criticism of institutions such as NIH who continue to try and make inroads on the condition, but any efforts and advances are painfully slow and will not be realized in
    my lifetime, I feel.
    So we trudge on, every day, never knowing, not if but when, how strongly and how often our days and our daily lives are interrupted, affected and turned on their heads by this silent and unforgiving condition!

    • Skyewaters

      July 30, 2020 at 1:26 am Reply

      You have said that so well. Thank you💙

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