I haven't yet been diagnosed, but from what I read about the symptons, it's possible. I visited a Nose,Ear & Throat guy last summer, but stopped going as the next thing he wanted to do was a spinal tap. I sluffed it off as no big deal; I'll just put up with the daily headache/earache.....but it continues and I am concerned whenever I read what can happen. So, I am making another appointment and continuing down the road to find out what's happening.

I went to him because I have had recurring (almost daily) earaches in my left ear (headache too) and they occur in the afternoon. This has been going on for over 2 years now. In his office, he put a tube down my nose to look at things and when he pulled it out all this fluid came out with it. Lots of it. He said that's not normal and began to suspect a possible CSF at that time. I occassionalt have a pretty good sudden drip after bending over, although it's not daily. He sent me over for an MRI of the brain and it showed no problems/leaks. Next he wanted to move to the spinal area with a spinal tap, but that sounds serious to me and I elected to put it off.

I am 66 years old and I am afraid of these tests. I guess I'm also afraid to find out what it is. But I am thinking I should start up again and see him once more. I'm hoping he'll try some easier and less invasive things first. That's what I will push for. I wanted to touch base with others to see how it went in the beginning for them. How did you go about getting a diagnosis? What test were done first? What test finally confirmed it?

Any info would be greatly appreciated.
Thanks,
5thGenTexan

I was diagnosed after they did MRI with contrast. MRI without contrast didn't show the leak.

Hi all!
I'm new here and just happened on this site and thread. I've had a constant severe headache for 4 months straight now. Not only that but dizziness, nausea, blurred vision, high bp, irratic heart beat, numbness in extremeties. It just came on suddenly after dinner in December.
So far, no one has figured out whats wrong. They thought I had a Chiari Malformation as my brain had sunk, but it wasn't low enough for surgery. Others said my symptoms were from diabetes. We've looked into rare poisonings such as manganese, black mold, lupas...all of wich carry the same symptoms. I know diabetes is a progressive killer but at the time I was pretty healthy, physically active in my job and played racquetball 10-12 hrs a week. Since this dehibilitating pain and other junk, I've become a useless waste. Just recently I had to go to er with possible stroke symptoms (numbness on right side of body). The ringing in my ears is extremely loud and quite often I will get a stabbing pain down the side of my head and then my ear would close up and ring like hitting a tuning fork. And to date i now get burning needles in my arms and face, diarea, loss of memory, dizziness, hallucinations and lack of appetite.
Im not one to take medication, hate it in fact, so I had been dealing with the pain and symptoms medication free until recently because the doc said to at least try to relieve the pain so that they can diagnose the real problem.
Well after a dozen different pain medications that didn't work, the last anitriptolene or whatever it's called, I went to neurologist and she came up with csf leak. I've had 5 MRIs, 2 CAT scans and lumbar puncture previously which showed opening pressure of 5.
So this week I have to get 2 more MRIs with contrast to see if there are any leaks in my spine. If that doesn't show they will inject some neuclear junk in my spine to find the leaks, if any.
I wake up with this and go to bed with it. Social life is worst than before because I can't deal with all the chaos and distractions.
Anyway, the symptoms seem to fit. I haven't tried to lay down yet to see if it lessons the pain but if I remember after hitting the "submit reply" button I will check it out...
Thanks for reading this and I may be glad I found this site!

I am new to this forum and looking for solutions. I was diagnosed in Jan 12 w CSF leak. Have been hospitalized 4 times w 4 blood patches & have had numerous tests to locate leak(s) & determine next steps. Currently on extended med leave as can not sit up for long periods of time w out head feeling empty, build up of pressure & fluid leaks from my nose. I am trying to learn if anyone has come across self help measures that have worked for them? I am eating better, taking calcium & fish oil & will start a water aerobics class next week. I have read that yoga strengthens your inner core which is your spinal cord. I don't think I am quite ready for that so will see how water aerobics works to perhaps stimulate the production of CSF. My neurosurgeon here characterizes this condition as very frustrating for the patient as well as the doctor trying to treat them. He tells me it will be a long slow recovery. I am just trying to stay out of the hospital. In addition to self help strategies I would be interested to learn if there are any other medical treatments beside blood patches and infusions that have worked or anything new happening. I look forward to hearing your responses. Thank you.