Hi,

I've been having weird neurological symptoms for about 6 weeks now, which my neurologist thinks might be from a CSF leak. But it's not a typical presentation, and I wanted to see if other people had similar symptoms.

Basically, when I'm on my feet, I get alternating feelings of pressure in my head or light-headedness. These feelings are relieved when I'm lying down, and they seem to get worse the longer that I stand up. My pulse and blood pressure seem to be totally normal and aren't much changed by standing up, so the doctor doesn't think its POTS. Because my symptoms have the classical CSF presentation of being relieved by lying down, I'm getting brain and spine MRI's next week to look for a CSF leak. But... reading the information on CSF leaks, I seem to be quite lucky in that I wouldn't call what I have a headache. My head is uncomfortable/distracting when I'm upright, but not in a painful way. Everything I read about CSF leaks says "orthostatic headache." Does anyone have any experience with CSF leaks that don't come with headaches? Or any ideas for alternate diagnoses? Thanks in advance!

D

HI D,
Do you notice any problems when you lift things or push/pull things? I have similar issues that have come from a weightlifting injury and I feel "pressure and aching" across the front of my head and sort of "behind" my face. Thanks, John

Hi John,

No, I can exercise alright.

Yes! I had a leak, and typically if your headache gets better when you lay down then that is a leak... i would contact dr. wouter schievink at cedars sinai medical hospital in LA. he is the number 1# for this and will tell you everything you need to know.

yes go to dr. wouter schievinK!it sounds like a leak and he is the only doctor who deals with leaks all day everyday... if you have any questions just let me know i'd be happy to answer them!