Hydrocephalus

Amber

Hello there
As a result of CP i also have epilepsy and hydrocephalus (a build up of fluid on the brain) This causes an extra large head

I am unable to wear any kind of hat. I have a rain coat for rainey weather but the hood wont fit my head so end up getting wet!
I get terrible headaches (common with Hydrocephalus). In the summer i would benefit from a hat because the headaches are worse at this time (due to sun)

Any ideas?
I would really appreciate your help

Thanks
Amber

Katherine Hayward

Hi Amber,
just seen your posting. I have cerebral palsy and hydrocephalus too. I have had this problem with hats as well. I used to go horse riding and I found the hat was tight on my forehead and sides of my head (where my shunts are: I have one that works and one that doesn't) and sun hats as well like you say.
Do you have a shunt? I also find that due to my shunt operations, my sensitivity on my head is such that I find it hurts when people dry or comb my hair , and if hats are too tight, I don't realise until someone points out my forehead is red when the hat has been taken off (due to the pressure of it rubbing) . Out of the hats I've tried, I find wide brimmed sun hats and also baseball caps ok as they feel comfy for me and protect me. Baseball caps are obviously adjustable too. For years I had the same problem as you with the sun and headaches. I have to watch how much water I drink and keep hydrated otherwise I feel really headachey. Another situation where weather gives me headaches is on very cloudy and humid days.
I hope you find a hat
Katherine

Bungle

Hi amber. My names Chris. I also sympathise with you as I was born with hydrocephalus and epilepsy. I can't believe I've finally found someone I can relate to. I don't have cp but I used to suffer real bad with my epilepsy. I'd love to meet people and make friends with people with my condition. Please feel free to message me anytime