Hydrocephalus fatigue and muscle weakness.

[Avro]

Hi,

My hydrocephalus wasn't picked up till pretty late in the day, so I have a third ventricle the size of an orange that despite and ETV and a shunt will not decrease in size. One of my enduring symptoms is 24/7 fatigue, the fatigue is both mental and physical. I also have muscular pain in my arms and my hands are a lot weaker. It hurts when other people shake my hand as if they are trying to crush it, which I'm sure they are not. Wonder if anyone else has similar issues, the fatigue affects my quality of life the most. It's always present every conscious minute, but sometimes ramps up to the point where I am pretty much housebound.and can't really do anything. There's lots of other stuff too, but I wondered if anyone else with hydrocephalus has had similar issues?

Thank you,

[Matt2584]

Hi,

I had hydrocephalus and have shunt installed.

I had fatigue but it wasn’t as bad as yours.

I was still a kid when I suffered with fatigue as I was also trying to get some education.

When I went to college in 2000, I don’t think they really took on board my symptoms and they piled homework onto me which was making fatigue worse.

In 2001 I was told by my GP to leave college and he also said I was unfit for work so I stayed at home.

I was at home for 6 years and this is where I lost a lot of confidence and motivation and was very antisocial.

I joined my local Headway in 2007 and from there my confidence grew and motivation came back.

Around 2014 or so is when I changed my diet for the better and I didn’t get so fatigued.

My diet was terrible and I used to consume many many sugary foods, fizzy drinks and rarely eat fruit or veg.

Now is completely different, I am more of a flexitarian (rubbish vegan as I call it) and I lean to more fruit and veg and have less sugar. Less refined sugar that is. I know you get sugar from fruits as well but this is natural sugar. Refined sugar is not natural.

[FlowerPower62]

Have you tried one if those blue light lamps, the type used by SAD sufferers? We've only had ours a week, but I'm sure it's helpful, both for my husband, who has the TBI, and me too! Half an hour every morning. Worth a try. X

[Hidden]

Hi,

My wife has a VP shunt fitted now, but the late diagnosis of hydro. Caused her to be paralysed on her left side, hands arms and legs. Part of her rehab was to improve this, which her leg strength is much better but she has stero-ognosis, where she is unable to fully feel or control her left hand and arm with interactions.

There is a hydro charity I found called sunshine, who have good information about hydro in both children and adults, they also have an emergency card you can get to carry with you detailing your hydro and what the symptoms are for others to be aware of.

Regards

[Hidden]

Just thought I'd add, its hydrocephalus awareness week, next week and the UK based SHINE charity have some helpful info online should you be interested.

Regards

[Avro in reply to Hidden]

Good call, thank you.

[Froggiefrog in reply to Hidden]

I actually printed off the info sheets for hydrocephalus from the SHINE website to give to my employer, as I found the info straightforward enough for someone who has no understanding, yet informative enough to ensure that they did, having read it.