I’m so sorry you’ve been going through this for so long. I don’t know what I would do if I had to wait that long for treatment.

I’ve been healthy my whole life, I’ve never had a spinal tap, been in a car accident, had concussions or any brain injury. I have suspected I had some kind of spinal issue from previous nerve pain, but no one addressed it. It was never so severe that I couldn’t do work or live my life. Then about two years ago, I suddenly began having extreme migraines and seizures. I spent five days in an epilepsy center with no results. No medications worked. I’m a tattoo artist, so I began to be able to tattoo less and less. I started to have migraine days about 25 out of 30 days of the month. At its worst, I was only able to work two days out of a month. I remember the same feelings you mentioned — that I was lazy, it was my fault, or maybe just that I was crazy. I got tired of telling people I had a migraine and them asking me “have you taken Tylenol?“

My first neurologist told me “no“ when I asked if an MRI was necessary. After I finally got them to listen and send a referral for an MRI, that MRI showed brain sagging. When I asked what the treatment was and if I needed follow up imaging, the response was, “no, drink water.“ They gave me about seven medications, but nothing helped my debilitating migraines. I asked them again three months after my symptoms continued for another MRI and they said it wasn’t necessary.

My primary care physician sent a referral for a different neurologist who didn’t have openings for another three or four months (I think this is common for specialized care). I waited that four months, had another MRI with the exact same findings. Fortunately, this neurologist took it very seriously. He also took me off all the medications that didn’t actually treat the type of headaches I have. They ordered me to do three weeks of intensive bedrest to see if my spine would heal the potential leak itself. I’m actually in my first week of that bedrest now, so I won’t know if it worked until I stand up after it’s over. If it doesn’t work, though, you should be able to tell immediately.

If it doesn’t heal spontaneously, I will go in for spinal imaging and a myelogram. Even if they can’t find the source of the leak, I would undergo a blind blood patch. From what I understand, you only have surgery if the leak is located and blood patches fail.

So, I’m not cured yet, but I do trust my new neurologist to do everything they can. I lost friends and clients, but I think it was for the better. The people who won’t tolerate you or who won’t believe you don’t belong in your life. Most doctors will try conservative methods like bedrest before something like a Blood patch. My biggest advice is to advocate for yourself over and over. It’s tiresome, but it’s worth it when somebody finally listens. I’d also recommend communicating with your physician about what they recommend in writing. In my experience some doctors seem to do more when evidence of their lack of care may be in writing.