Hi

My consultant now thinks that I may have a CSF leak and wants it confirmed by an MRI with contrast. My symptoms are not typical of this ie it doesn't go with lying down and doesnt come on immediatly I stand up. and I can't say that I have noticed an outstanding amount of nose dripping although this does happen on rare occasions.

It has come on everyday for nearly four years now sometimes first thing when I get up, sometimes when I am still in bed and other times it wells up during the morning and is full blown after lunch.It is a dull, deep, boring, non throbbing pain that affects only the left hand side of my head and neck.

I've had every nerve block and drug you could possibly imagine..........all failed ................but the most significant factor is that I can have a strong shot of caffeine and the headache goes off. ( I drink de-caffeinated at all other times )

I sometimes get burning in the occipital area as well. If I don't have any caffeine it would eventually subside sometime in the evening. it can last 2 hours or 8 hours (it has a life of its own )

can anyone relate this to a csf leak ???
many thanks Sonia

Gee, I am so sorry about this headache battle!

You've come to a wonderful place tho!
Here's the direct link to the CSF Leak forum to click on:

http://neurotalk.psychcentral.com/fo...aysprune=&f=78

There's also a wonderful forum for Occipital issue. As a matter of fact, one of my good friends is very active on that forum....I'll see if i can buzz her over here to your thread.

I've heard that too Re: Spinal headaches.....'they' say to lay flat and consume high-caffeinated beverages.. wierd huh!
But don't do anything without approval from a medical professional.

Hang in there!
Help is on the Way!


Rae

sonia3
I am glad you found all of us here at Neurotalk. I am sorry for not replying sooner but just back from work day. Sad you are here for the reasons you are but I know you will find great support lots of info and meet some of the most understanding smart caring group of people you can ever be in contact with.
Have you visited our O.N. forum yet? here is the link
http://neurotalk.psychcentral.com/forum105.html
follow the link and read the stickies at the top .
a few of my friends have O.N. post in the O.N. forum here. I am sure you will find lots of info and help. One of my good pals with O.N. is looking into a SCS for her O.N. I will share and help anyways I can.
I am sending you prayers and an endless supply of low pain thoughts Sonia3 .
Welcome to NeuroTalk It is Nice to meet you .

PEACE
BMW

hi Sonia

CSF leaks are usually but not always associated with trauma or surgery to the the head as in my case, the symptoms are not as defined, as spinal leaks , that can be spontaneous or caused by botched epidurals or lumber punctures or congenital disease, they can be very hard to diagnose the less invasive technique is the MRI the next step is a CT cisternogram

can you remember hitting your head around the time this started ? it would be extremely rare to just develop a cranial leak

hope the tests rule out this problem , you will find support and knowledge here at NT

and a big fluffy welcome

I hit my head 1 year before this started ???

Rrae.......When I have had to have spinal taps to diagnose something, they (the docs) say if u get a "spinal" headache........a leak of the csf fluid from doing the tap......lay flat and drink caffeine........PLUS drink tons of other fluids in general!