Hydrocephalus, shunt, revision,revision,revision, perotinitus,meningitus, mci, narcolepsy, adjustment disorder, single mum of two.

[ladyjane]

Hi everyone.

ive read so many posts here which remind me of me. I try to keep my chin up, but its hard.

[ladyjane]

Its taken three and a half years to see a neurologist. Finally I was taken in to hospital for investigation. I thought that when they found what was wrong with me I would be relieved...validated...proof it wasnt all in my head and i wasnt going mad. I didnt feel validated it was an anti climax I didnt expect.

Im still the way I am. I cant remember anything st. I spend most of my time sleeping, The pain I have is horrible. Sometimes the pain gets so bad its hard to bear. I go to the hospital, the nurses roll their eyes.

I take co codamol and gabapentin for the pain, sometimes tramadol.. if im desperate. Does anyone know of anything effective for horrific headaches? Ive tried all the migraine treatments, amitriptaline ( vile drug, which left me incapable of stringing two words together and i still had the pain) betablockers ( unconsiousness in pill form)

Also I take modafinil, Although sometimes I can stay awake, if i stay still for to long i have to sleep, when i fall asleep I cant be woken up. Does anyone else have this problem?

[Carty3 in reply to ladyjane]

Have you tried being tested for t. whipplei I have a lot of the same issues you have and have just been diagnosed with tropheryma whipplei which spread from my stomach to my nervous system and brain. Maybe you should request to be tested for it it might have been what caused your meningitis and your hydrocephalus. Anything is possible most people that have it don't even present with stomach issues at all. Ask to be tested for it actually demand it. I worked in a hospital for 10yrs as a respiratory therapist having this infection dormant inside of me without even knowing it and actually I'm the one that figured this all out on my own no medical doctors except for when I was specifically tested for it. Just a thought this could be the root of of all of your problems. They can test blood, saliva, and fecal matter. Best of luck to you I'll be praying for you!!!

[zainey-lainey]

This is probabaly not you but thort i wud share it. I had a friend who used to get headaches.. was coz she needed Glasses in the end but the headaches were there so she took pain killers. and kept taking pain killers then they didnt work so she took stronger one's then she got amune to them and so on untill she need pain kilers just to feel NORMAL. yes she was addicted. The drugs made her so tierd and slept almost all the time... My advice would be to ween yourself off the prescribed drugs with your doctors support.Be patient and give it time and see. but i am no consultant so you must see a Doctor first and discuss this as an option. Are your eyes ok it may be them not your brain. tha back of your eyes are the window to alot hun. I bet you are at your wits end ,you poor love.

[Hidden]

I also have a shunt but I haven't had any revisions yet. The problem is though that I've been having a few problems with balance etc like what I did pre-shunt. Any ideas why that may be happening?