Overwhelming Concern


I've lived my life with complications from Hydrocephalus-an excessive accumulation of cerebrospinal fluid in the brain-and a malfunctioning VP shunt.

My shunt was supposed to help me be able to have more stability in my life by circulating excessive CSF from my brain. However, it's malfunctioning lead to many problems that were incredibly overwhelming and seemed to reach their culmination when I had the worst seizures to date at the age of 18.

That occurrence seemed to result from excessive CSF draining through my previously-blocked shunt. Unfortunately, once I was taken away from where I had that experience, I didn't have help or receive medical treatment.

Although I don't really know what could have been done, I know that being taken back to my house and left alone was wrong.

The seizures seemed to continue throughout the night, followed by a lack of recognition of my own existence and blackouts,

Like how i lived when my shunt had worse blockage, these "blackouts" overwhelmed my body while I continued to move and speak unknowingly.

Before much time had passed, the world changed from me standing in my house to my body walking toward my locker at school.

After another blackout, I continued living as usual.

Although there was less pressure in my head from my shunt seeming to no longer having blockage, existing was still immensely stressful.

Everything I did had an impact on my bodily functions, awareness and consciousness.

The intracranial pressure that I lived with wasn't something I ever adapted to, not that anyone really could.

Even though I wasn't aware of what was wrong with me after the worst seizures I'd had, I still remained suspicious of my existence, as usual.

Without a way to receive help due to a lack of understanding from many people, my state of mind and the condition of my body remained "invisible".

For reasons unclear to me, the "normal" headache I lived with increased to unbearable levels and the aching in my body increased with time.

This seemed to worsen my existence by creating more obstacles with every waking moment and minute during sleep.

My only guess as to why my daily living worsened about a year after the excessive CSF drainage and seizures is because my body became somewhat numb to what it was trying to handle.

Eventually, it may have become too much to handle.

I've lived with a lot of struggling over the past few years, which seems to be somewhat better now.

However, there are times when my body's stability will plummet suddenly.

For example, I will experience sudden paralysis for hours, deal with insomnia and/or sleep paralysis, have apparent symptoms of VP shunt malfunctions, have worsened heart issues (which seem to be linked to the aforementioned issues), and have increased numb pain as well as a change in gait and physical stability.

On a couple of occasions, I seem to have possibly experienced symptoms of minor strokes.

On top of that, I have a VP shunt that is way too tight as a result of shunt migration when I was 18.

Unfortunately, it just seems to continue to tighten, causing various problems.

in some ways, living is much better than it has been over the past few years and is certainly better than it was throughout adolescence and my childhood.

However, these problems are still quite alarming!

There may have been some issues I've forgotten to mention-as well as many problems I've lived with that I haven't named due to the fact that they would just be far too extensive for a post.

While each of them affect my body in fluctuation, they seem to be linked to what my body has endured.

Sometimes, I wonder if what I'm going through is changing for the better until sudden and intense issues arise.

It's clear to me that my body has taken too much damage to not receive whatever help possible, especially with considering that each of the issues that complicate my life are probably permanent and further affecting me.

I wish I could figure out what has been wrong, but I'm not able to at this time because I don't have health insurance and I'm not able to afford any right now.

Because I express my concerns online, countless people tell me to visit a doctor.

However, that's not exactly easy as an American resident without health insurance.

Even with it, there will probably be an unbelievable amount of expenses!

If any of you can make any sense of this summary, please try to share whatever you can.

For those of you who have read this, thank you. <3

Please make the most of your days.

2 Replies

  • Hi

    Whilst I don't have 'actual experience' of a VP shunt, I used to be a paediatric nurse so have some understanding of the clinical/holistic care surrounding one from caring for the patients.

    Your post is informative yet summarised beautifully for other forum users who aren't aware of the implications of a VP shunt.

    I'm in the UK so no, it's not the norm for us to 'just not have access' to a doctor. Some may complain saying they have to wait three/four/five weeks to see one but won't have any idea about the frightening fact that you never will unless you have the money to.

    I can't begin to imagine how you function when you're well, let alone when your shunt is particularly bothersome or some other ailment arises without appropriate medical assistance being readily available.

    The issues you describe are a vast number, especially the seizures. Do you have any family or friends who could support you in some way?

    You sound like you'd benefit greatly from posting on Health Unlocked - not sure if there's a Hydrocephalus forum? Or do you also have to deal with chronic pain as well?

    Whatever you need to 'rant' about - there'll be someone who can relate to you and can listen with a 'knowing & understanding ear'.

    Best wishes


  • Thank you for sharing. :)

    I know that issues with Hydrocephalus and shunts can cause seizures-that has been apparent from the past,

    However, my shunt seems to not have severe blockage or excessive drainage of cerebrospinal fluid.

    That means I haven't had seizures for quite a while, which I'm very happy about. :D

    However, battling other issues that can arise from shunt complications as well as health problems that have resulted from the damage its malfunctioning has caused is troublesome.

    For example, I've been wondering for years if the intense intracranial pressure I've had in the past as well as the seizures from the past could have caused some sort of lack of blood circulation throughout my body.

    I've had problems seem to result from lacking blood circulation, so I've been searching for ways to fight this that would be healthy for me personally.

    Because strenuous exercise seems to be increasing pain in particular areas as well as causing worsened exhaustion, I've lessened the strain I'll put on my body during exercise.

    I've also been doing a lot of research on helpful ways to increase blood circulation, finding that lavender and peppermint can be helpful.

    I've considered finding either of these things as shampoo, additions to water (not tea, because of caffeine) and essential oils themselves.

    If they seem to work well enough, I may find that one of the problems I've been dealing with could be low blood circulation.

    Hopefully, they will help me relax even if they aren't exactly what I need for my personal health issues.

    If I can find any healthy solutions for myself, all of these years I've lived striving and searching won't be in vain.

    Thank you for your reply, RAYJAYC.

    Make the most of your days. ((_^)))

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