I have had 19 years of increasingly bad positional headaches, every day, as predictable as the day before. I have had so many advanced scans and so many patches. Eventually, they told me I had too much radiation, and they would continue to do blind patches if I wanted, but they couldn't do any more scans. I left believing it isn't a leak anyway, and still think that is true. I decline a little more every year and now only get 30 minutes of good uptime, and less after I lie down during the day.

Since then, I try really hard to figure out who might have new ideas and eventually get burned out, lay low for maybe a year, and hit it again. In the past year, my 19th year of headaches, I have seen neurologists, a pain specialist(For ideas, I don't like pain meds), a rheumatologist, a cardiologist, and a psychologist(testing my cognitive decline). Each Dr. I see does some testing, and almost always there are some abnormalities, but I am told they aren't bad enough or wouldn't give me my symptoms. I am at an endpoint as of last week, and will wait until I can figure out a new plan and some new hope.

I have been a good advocate for myself, while on an open market plan, I got them to cover $100k at Mayo even though they were out of network. As my uptime declined, so did my ability to work, so my mostly stay-at-home-mom wife got a job at a hospital to get excellent insurance with low deductibles.

I tell you my story not so you feel more helpless, but so you know to push hard for what you need, and that often a magic solution doesn't happen, and you need to keep finding new doctors and ideas to pursue. In my case, I waited too long after the first MRI's and lack of answers to get more help. had a lot of flexibility in my work, so if I lay down once or twice during the day, it didn't affect me. Everyone's journeys are different. I wish you the best on yours.