Hope for those who may be struggling
I suffered from headaches almost my entire life(43). When I was younger, there was really no discernible pattern. They just happened. As I got older, maybe early 20s, I noticed they would be after straining myself or physical exertion, but it would be hours later. As time went on, the headaches would happen soon after exertion or instantly. Then it got to the point I could only be upright a few hours before my head started to hurt. This is when I noticed if I would lie flat, the pounding at the base of my skull would stop instantly. It should be noted over these years I had about 5 MRIs of the brain that showed no issues.
Over the last year I really focused of trying to figure out what was going on. At first, one neurologist tried to tell me it was exertional migraines. I really didn’t believe that because, why would my headache stop instantly when I laid flat if it was a migraine? So I found a new neurologist and he decided to get some new brain images. That’s when it showed my brain sagging. It’s interesting that even after almost 2 decades of progressing symptoms, nothing showed up on the previous MRIs(they checked).
So after researching, I asked for a referral to Duke and went in Nov of last year. They found a venous fistula at T5. I scheduled my embolization in January.
After the procedure, it was a little rough. Not from the procedure itself but the rebound pressure and recalibration. I had constant ear popping, autophony, and intense rebound pressure. At first I wasn’t sure it worked only because I felt so miserable. Slowly but surely everything is starting to even out. I don’t have any of those symptoms anymore. It’s been 6 months and I feel great. I can run, lift weights, play golf with no issues. I haven’t had a headache of any kind in 4 months.
I write this to those who feel like there is no hope. I was like you for about 20 years. Thinking there were no answers. That I was destined to suffer constantly. That is not the case. In my case, for almost 20 years, nobody could give me an answer. Then one day, the imaging showed otherwise. I’m not saying everyone on here who thinks they have a leak does, but I encourage you to advocate for yourself.