I am just joining this forum as I am having the same symptoms as other people. So far, I'm still on my first neurologist. He is very smart, a headache expert and seems to really care about
my pain, although he does through pills at me. I think I have a low pressure CSF leak, as I have a lumbar puncture 12 years ago and had a blood patch that never really worked fully and continued to have ongoing 24/7 headache for a few months, then just went away. Thought that was the end of it until 2 years later, it started again, except this time, I had no lumbar puncture. All tests negative and no medication would control my pain. Lasted about
2-3 months, then went away. Then again in 2005, same scenario. Many MRI's and other tests all negative for anything and I was told that There was no evidence of a CSF leak. As a last resort, I tried Botox,a nd it worked within a few days, my headache was gone. Then on Dec 22nd 2011, 6 years later, it started again and is still going on. I am convinced that I have a leak that never fully healed and for whatever reason, it
opens up sometimes and causes theses headaches. They usually do disappear with time, but it is so hard to be patient. He is now sending me for an MRI of the brain w/ contrast as well as an MRA with contrast to check for vasculitis. He said that if I have a leak, it needs to be fixed with a patch, but I vowed that I would never, ever, have another lumbar puncture for any reason, cause chances are, it will make it worse. He is convinced that this is being caused by something else, and wants to give me piece of mind by doing the scan. He said that he will have a pretty accurate scan to give me an answer if I have a leak or not. If I do, I want it fixed with surgery and no other way so it will be permanent. He wants to wait on Botox until the tests come back. He is also concerned about
vasculitis in the brain since my protein levels have come back elevated twice, as well as my platelets. I am very scared. This is consuming my entire life. I go only where I need to go and do what I have to do. I have no other life outside of doctors and work, groceries and laundry. I cry everyday and don't even want to get out of bed in the morning. My headache is better than it was a month ago, but still not completely gone. I am so scared. It is nice to be with other people in the same boat. Thank for listening. Please posts if you have an thoughts or suggestions. I'm
open to anything. Thanks everyone.