Hydrocephalus: The Cannabidiol (medicinal cannabis) effect…

Hydrocephalus: The Cannabidiol (medicinal cannabis) effect…

If anyone had ever said to me that I’d be using cannabis in any form, in my future, I think I would have asked them what they’re smoking. I’ve always been one to toe the line and always try to do the right thing…I still do, mostly.

But what is the “right” thing when it comes to managing and making decisions regarding your own health, and responding to life, by taking matters into your own hands?

Anyone who has followed my journey with Hydrocephalus over the last 13 years, since diagnosis, will probably understand what would have driven me to this point. Skyewaters.com is plastered with it all and my book tells the story from the beginning (I’ve made this free until the 18th of June).

I’ve literally reached a point where I’m filled with so many emotions best described by words like:

Fed up. Tired. Helpless. Hopeless. Deflated. Directionless. Lost…to name a few.

I’ve tried the traditional route and it simply hasn’t been effective enough. Going to the Emergency (countless time) when you’re symptomatic and being sent home. Having tests and scans which show everything is “normal”, trialling medication after medication, even seeking a different opinion and changing doctors (too many to mention); all while trying to live a “normal” life and working full-time to support my family. Most people with Hydrocephalus will be nodding their heads right now because they too go through this. I’ve heard the saying too many times before, “If it’s not broken, don’t fix it”. These words, uttered to me by a Neurosurgeon in 2013, have set the tone from then till now. Something I can understand, to a point. The fact of the matter is, while nothing apparent comes to the fore when it needs to, as a person living with this condition, you are expected to manage the pain and discomfort. (A literal hell!) Sometimes feeling like you literally have to be half-dead or comatose before any action will be taken.

Crazy rollercoaster ride that seems never-ending…

So, I decided to trial medicinal cannabis, more specifically – CBD oil as a way of managing my pain and discomfort. The way I see it, it will either help or it won’t. And, I don’t really see any difference between this or trialling one anti-depressant or another. If anything, the side effects are minimal in comparison. I’m no expert and feel that I have so much more to learn, similar to when I started out on my Hydro journey but, what have I got to lose?

Choose your poison!

The strain and further financial burden doesn’t escape this trial period either and therefore, it was part of the “difficult” decision I had to make on going this route or not. Given the state of the world right now and household incomes being reduced or in some cases, nothing coming in, it hasn’t escaped my family either. I assumed that something like medicinal cannabis, not approved in many countries or prescribed by just any GP, would come with a hefty price tag. It took some research and driving myself nuts to find a legal way of getting to this point but, I persevered, and, in the end, I’ve arrived.

To break the cost down for you, it came down to a $300 consult with a GP (they are hard to find as not all of them prescribe it), excluding the cost of medication vs a $95 telephone consult (which lasted 5 to 10 minutes, a Government approval done on my behalf to use the oil, and $279 for the 30ml bottle including shipping). I reckon the latter worked out far more economical and is probably the better choice under the circumstances. There’s also a free pharmacy consult 2 weeks after starting the medication to ask any questions or go through the effects up to that point in time. Subsequent consults are less as well and only booked IF you need them.

I’m an analytical person by nature, not as trusting and thanks to my day job, a bit more sceptical than most. I’ve had quite a few reservations and apprehension but I’m willing to brush all that aside in the interest of my self-imposed trial.

I consider myself one of the “more fortunate” ones to escape the hell of living with daily headaches, pressure buildup, constant nausea, dizziness, vomiting, or anything else this condition throws at you. However, that doesn’t mean I escape it fully as I do have the “fun” (note the sarcasm), part of playing chicken with a raging bull inside my head, from time to time. You see, I started plotting a timeline of when I have my episodes, which statistically happens between 1 to 3 months apart, 4 at most. (PLEASE NOTE: Hydrocephalus is unpredictable so I’m prepared to be wrong in this regard). The way I figure it, I will only need about 3 of these bottles to know if it’s effective or not, as it lasts 4 to 6 weeks. I’ve been on it for a week now with really bad dizziness the first few days (one of the 3 side effects but something I can live with). Also, I had slight daily headaches, but it felt more like my body getting used to a new substance. Now, a week later and on a higher dose, I feel great and the dizziness/headaches are gone!

Because of the added benefits and long list of things medicinal cannabis is used for, I have to admit, I started noticing a few changes. I sleep better at night, no more waking up at 3am! I’m more relaxed, calm and don’t lose my temper quite as easily.

I’m not saying this is for everyone either as some people may have had bad experiences with it or be against using it etc. To each their own. The point is, do what it takes to get yourself to a level of comfort in your medical care, explore your options and when you find one that works for you, stick to it. If you’ve found a benefit in using this form of medication, why not share your experiences?

I’d love to hear from you!

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!

8 Comments

  • sealuv2b

    June 5, 2020 at 1:26 am Reply

    Skye, are u taking CBD oil or medical marijuana. At 72, I use both and have for years. Both are effective for pain relief, but the marihuana is more potent. you do not need a doctor for the oil , but you do for the marijuana. Good quality, inexpensive CBD oil can Be obtained relatively easily, Marijuana can be obtained from other means than going to a medical marijuana clinic, and can be less expensive, as I’ve been able to obtain it that way for years. You absolutely need to take your health Care into your own hands and not rely on the mainstream doctors to be your ultimate source.

    • Skyewaters

      June 5, 2020 at 7:43 am Reply

      I’m using CBD oil only. I wanted to find a legal way of getting what I need. The oil was recommended at the consult I had so I’m trialling it.
      Taking my health care into my own hands is the reason why I’m at this point. And, mostly because I’ve exhausted all options in the mainstream system. I know it’s not a cure but since I have to manage my symptoms until i need surgery again, this is what I’m doing.
      Thanks for commenting 💙

  • Tumi

    June 4, 2020 at 11:29 am Reply

    Hey Skye

    I’ve been a bit sceptical about the use of CBD, but now after reading this blog, I think I will try it out. I really can relate to your story, I’ve been prescribed so many meds, even anti-depressants for the past four years nothings seems to be helping.

    • Skyewaters

      June 4, 2020 at 11:23 pm Reply

      Hi Tumi

      It’s not a cure and it doesn’t work for everyone but, if you find it works for you, then go for it.
      I think it’s the best chance we can give ourselves of managing our symptoms successfully and, more importantly, staying sane!
      All the best and thanks for commenting 💙

  • Duncan

    June 3, 2020 at 12:17 pm Reply

    Hey Skye, I have been using Cannabis most of my life, started in my teens but as I aged and had a family I moved away from it for the most part. After my Shunt Surgeries I was reintroduced to it for pain and it has helped Greatly.

    • Skyewaters

      June 3, 2020 at 12:35 pm Reply

      Hey Duncan. I understand and have seen the destruction it can cause, if used incorrectly for recreational purposes.

      Knowing there’s no cure for Hydrocephalus is enough as it is. But, the fact that it can help manage the pain and symptoms especially when nothing medically can or is being done, is a positive in my opinion.

      Good to know it’s helped. Thanks for commenting 💙

  • Mr Shaun McGuinness

    June 3, 2020 at 12:16 pm Reply

    Cannabis and CBD have been instrumental in my recovery from TBI. I still have Hydrocephalus and a shunt but they both help

    • Skyewaters

      June 3, 2020 at 12:29 pm Reply

      That’s good to hear😊 I’m glad you’ve found something to help you along. Thanks for sharing Shaun💙

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