Geez!

I posted about my headache problem in a forum for people with spinal cord injuries. This is one of the responses I got:

This should be treated as a serious situation, and you need to be seen by your doctor immediately. A CSF leak can quickly lead to you developing bacterial meningitis, which is a life threatening condition. A severe headache is one of the signs of meningitis (although it will present at all times, not just when you are in certain positions). If you develop nausea/vomiting and/or start running a fever, proceed to the ER immediately.

I've had a post-op CSF leak that resulted in me getting bacterial meningitis twice. After surgery to fuse me posteriorally from C2-T4, I leaked CSF through my incision. It's a clear fluid that crystallizes/granulates as it dries.

To try to alleviate CSF pressure so the dura could heal, the surgeons put in an external spinal catheter to drain CSF into a collection bag. Shortly thereafter, I was stricken with meningitis. It came on fast and hard -- in less than two hours, I went from be A&Ox3 and feeling pretty good to having the worst headache I could imagine, being very out of it, and projectile vomiting (the nurses told me I set a floor record by hitting my then-BF from across the room). Was put on a cocktail of IV abx immediately and remained on them for three weeks, and had two surgeries to close the dura (one to suture the dura itself and when that failed to stop the leak, another to use my left trapezius muscle as a graft over the incision).

The second round of meningitis hit three days after I was released from the hospital. One night, I woke up about 4am to use the bathroom. As I maneuvered my halo-braced self out of bed, my head started to pound. I peed and headed back to bed, popping a few pain meds along the way. Half an hour later, I vomited up the pain meds and told my BF the headache was worse so he needed to call the home health nurse. By the time he reached her at 6:30 am, I was in a coma. He managed to get his robe around me and get me to the ER, where they again started a vanco+ abx cocktail (including some med also used to treat TB that turned all of my bodily fluids orange). My parents and BF were told to expect that I would remain in a coma for a few weeks. I miraculously woke up the next day, but was hospitalized on that abx IV for four more weeks.

Please do not mess around with this. If anything feels off -- esp. if you throw up along with your headache, RUN to the ER.

Sorry you're going through this, Shannon, that headache is horrible.