I didn’t have headaches growing up. None of my family or friends suffered from migraines. People having world shaking headaches was not something I knew anything about. I assumed that all headaches could be solved with rest and over-the-counter medications. I had no idea that my entire life would change the day I felt my head split open.
It was around 6pm on a weekday. I was at my parent’s house preparing for my next move. My folks had left earlier that day for a short vacation and I was going about my evening routine. Out of nowhere, I felt like my head was being stabbed with a knife and pried apart. I fell to my knees and made my way to the bathroom where I threw up. Crying and not understanding what was happening, I called my mom and told her that something was wrong. They didn’t know what was happening either.
I called an ambulance and squeaked out my need for help. They arrived a few minutes later and picked me up off the floor. I kept vomiting on the way to the hospital and sat through the sharpest pain I had ever experienced. The EMTs said it was a migraine and that they weren’t worried. Once I arrived at the Emergency Room, I was brought to imaging right away just to ensure that I wasn’t experiencing a stroke or aneurysm. I wasn’t. Next came the spinal tap, checking for meningitis. The results were inconclusive leaning towards positive. They began the isolation procedures.
The entire time, I was alone and scared. Vomiting, in severe pain, and trying to adequately communicate to the doctors, I laid in my bed utterly worn out. Finally, my parents made it to the hospital. They had left their trip and spent hours driving up to help. It was incredibly generous. But at that point, I was put into quarantine and they couldn’t be with me.
The hospital I was taken to was terrible. It was in a mid-sized city and had a reputation for deadly nurse care. It was like most American healthcare in rural-ish blue collar cities, lacking quality doctors and staffed with underpaid uninterested workers. I was put into an isolation room and left there for three days without seeing a doctor. My nurses briskly gave me medications and checked my vitals. Once my doctor showed up, he said that since I wasn’t showing any new symptoms, it probably wasn’t meningitis. Then he sent me home with instructions to find a neurologist if my headaches continued.
I went home and for the first time in 4 days, sat upright. My head exploded. I actually thought that I was going to blackout from the pain and pressure. Lying down, the pain eased so I tried to sleep and figured it would resolve. It got worse. Every movement sent waves of hot pressure through my skull. I went back to the E.R. unable to sit or stand. They decided that I likely had a spinal fluid leak from my tap earlier. They did 2 blood patches (they take your own blood and inject it around the spot where the spine was punctured) and I was able to sit up without pain.
For the next 3 weeks, I had severe migraines everyday and was in the E.R. every other night. I realized that this wasn’t a passing issue and that I really did need to see a neurologist. So I had every test and took every medication, some with horrific side effects. As I gained symptoms around my migraines, I sought out doctors who would look at me holistically. As everyone who reads this knows, finding doctors who actually listen and are interested is beyond difficult. I did what most of us do and doctor hopped (within my price range and energy) until I found a neurologist who was okay. He wasn’t great but he didn’t dismiss me so that is who I see when my primary care physician can’t handle something. It is what it is.
I wish I would have known that people with EDS are much more likely to have spinal fluid leakages from a tap. Even though I didn’t know about EDS at the time, I knew I was hypermobile and always disclosed that to my doctors. Until I saw a nervous-system specialist at an award winning hospital, no doctor ever mentioned a correlation between EDS and migraines. He said that some interesting research was being done with chronic migraine sufferers, EDS, and continuous spinal fluid leaks. Unfortunately, the diagnosis process is expensive and invasive, especially if a leak is found and surgery is required to close it.
So for now, I still deal with daily migraines and weekly episodes of complete agony. I still have days where I seriously consider breaking into my skull. I haven’t been able to find a medication that eases my daily pain or one that helps as an abortive for massive episodes. Thankfully, I have found one “experimental” procedure that has helped lessen the frequency of my severe attacks. Unfortunately, it is very expensive. I still have to go to the hospital a few times a year for migraines that won’t stop on their own. They provide intravenous medication to stop vomiting and get pain relief (yes they treat me like an opioid addict and hold back on the pain management until they clear me but that’s a rant for another time). I know some of my triggers and spend my days avoiding what I can, but sometimes the migraine creeps in anyways.
There is a lot of physical pain in my life. My new normal is a viscous battle between accepting my bent body and fighting every symptom. Being diagnosed with chronic migraines doesn’t feel helpful. I’m lumped into the same category as millions of other sufferers. While this is not one of my rare conditions, it doesn’t seem to be putting me any closer to a cure or, even better, an answer for why I’m broken. With so many people, especially women, experiencing life altering migraines I have to hold out hope that every new and experimental treatment will yield amazing results. That we will all find affordable and convenient ways to manage our brain pain one day soon.