Think for a minute, do you have a headache?
Really focus. Any pressure, any sore spots? That may seem like a silly question to ask you to think harder about. But for seven years I dealt with almost daily headaches. Seven years where that question was a reality where even on the good days, if I really thought about it, my headache was at least a 3 or 4 (on a pain scale of 1-10). The good days were rare, so it was more common to walk around with head pain at a level of 6 or 7.
My neurologist blamed the headaches on three things: a Chiari malformation, problems with my neck, and migraines. All three of those things are true; I do have those. But given that my headaches were often positional (improved when lying down) and also responsive to caffeine dosing, I kept asking about the possibility of a spontaneous cerebrospinal fluid (CSF) leak. The possibility seemed so remote; my doctors were hesitant to follow that trail.
Through a chance reading of an MRI by an astute radiologist, we finally had some evidence that made the CSF leak theory plausible. In August of 2011, through a painful thoracentesis to draw some fluid for testing, we got a definitive positive diagnosis of a CSF leak and I was referred to the chief of neurosurgery at UCSD for consultation (when you’re considered a high-risk, complicated patient, you get the top guy). We decided on an epidural blood patch to resolve the leak and got on the schedule of UCSD’s blood patch expert. In the meantime, I was at my lowest point. I had no energy, my head hurt constantly, I was dizzy, I felt like my brain was foggy, I was nauseated and motion sick just from normal life. I stopped driving just to keep everyone else on the road safe.
In December, I went in for the procedure and left feeling hopeful. My energy levels were improving and I had headache relief! For 6 days it seemed like it was maybe going to work, but by the end of day 6 the familiar neck tightness was setting in, and by day 7 I had a headache.
Attempt number one failed, but we had seen enough symptom relief to know we were on the right track.
In January, we took another run at the epidural blood patch procedure. I was hopeful that this one would work because this time, we would increase the amount of blood used, deliver the patch across three levels instead of just one, and increase the amount of rest to see if that would help the patch hold in place. This tri-level approach unfortunately triggered a reaction in my nerves from T8 to T10, leading to extreme pain circling from my back to my chest/stomach. I was given drugs and things settled down enough for me to be discharged to go home.
This was when things really got interesting.
By the next morning I had an excruciating headache. We called the doctor who was concerned that some blood had made its way up to the brain and he asked me to come back for a CT scan (blood around the brain = very bad). Thankfully, the scan was clear and I was offered two options, admission for pain management or home with narcotics for pain management. I chose going home, thinking that would be better. This decision would soon reveal itself as a mistake as I woke up in the middle of the night with the worst headache of my life. I was dizzy, nauseated, and when I started throwing up my husband said it was time to head to the Emergency Room. After ruling out a need for immediate surgical intervention, I was admitted to the hospital for pain management. At first, I was on total bedrest. The doctors didn’t want me to move as they evaluated every angle to try and figure out what was happening. I wasn’t too excited about moving either, because every movement increased my pain and usually made me throw up. Over the next five days, several neurosurgeons on the team stopped by my room to weigh in with their opinion.
Finally, the pain and nausea were under control with medication and the chief of neurosurgery stopped by to give his opinion. He outlined a few possibilities and future treatment options, but with the pain under control, the best course of action was to simply go home to wait and see if the blood patch actually worked.
In the hospital, I was filled with regret that I had even tried to resolve the CSF leak. Things were so much worse than they had ever been. But now, a few months later, I am HEADACHE FREE. They did it. They actually patched the leak!
Patching the leak, although awesome, hasn’t been completely rosy. But each day is a little better. I still get migraines, my neck is still a mess and causes pain, and the resolution of the leak exposed the symptoms that come from Chiari malformation. But now, tylenol usually takes a headache away completely.
The question I asked at the beginning is a question that I ask myself regularly. After seven years of near-daily headaches, living without a headache is still so foreign. At times, I'll have a rush of good feelings and when I pause to reflect on why, I realize it's because I don't have any head pain. Being headache free is something that most people take for granted. For most, headaches are the exception and not the rule. 10 years ago it didn't feel like a blessing to be headache free. It just felt normal.
I think that's the way it is with our lives. We can miss being aware of our blessings. We live our normal lives not realizing how blessed we are just to be in it. I'm not minimizing how hard daily life can be. Jobs can be stressful, kids can be demanding, people can drive us crazy. But my goal is to live my life aware of the blessings that seem so normal that I don't even realize they're blessings. So ask yourself again, do you have a headache? No? Then celebrate--because being headache free is a huge blessing.