As I sat waiting for my first appointment at the neurology office, I had a raging migraine and an unremitting headache. I was in the ER a few days prior, but the drugs had mostly worn off and I was back to how I felt before. My headache kept waking me up at night, and I was constantly dizzy and exhausted. The migraine medication I was taking at the time spiked my heart rate so high, it took me hours to even get to sleep. I used what little energy I had left to be nervous about the appointment, hoping that they could fix everything with a magic wand. Meanwhile, across the waiting room from me, there was a man in a wheelchair who was paralyzed and unable to speak. His caretaker checked in for the appointment at the desk while I quickly scarfed down what I could of my sandwich and potato chips. From that moment, I felt what can only be described as chronic illness imposter syndrome. And I couldn’t shake it, even though the neurologists I met that day seemed to believe that my head hurt. Migraines seemed like a minor complaint compared to ALS, or Parkinson’s, or basically any other problem serviced by a neurology office.
I felt it again during my next trip to the hospital, or in the ER more specifically. I had been in the ER for two days and the pain was getting worse, not better. The attending neurologist and her naggle of residents came in that morning to inform me that I was getting discharged, like it or not. “You need to manage this at home,” she said, “there are no other medications we can give you.” The fact that none of the medications worked seemed insignificant, and it didn’t feel like much of a discussion. As a consolation prize, the neurologists said they had put in a referral to the headache center, where they did offer more treatment options, including inpatient treatments. But even still, I considered it a sort of miracle that I got a terrible migraine attack before they finished processing the discharge paperwork, which forced the neurologists to come back and give me a whole bunch of…get this…other medications! And this is also how I got admitted to the hospital, where I learned that there are literally dozens of other migraine medications, most of which aren’t given in the ER. Even as I waited one more night in the ER to get a hospital bed, I felt guilty, as if I had intentionally frustrated the neurologists who wanted me to go home and manage my pain alone. But the doctor who was overseeing my transfer gave me a glimmer of hope: he said after I got settled in the hospital, I would be evaluated for direct admission to the headache center!
But I was transferred to a hospital with available beds, not the one sitting directly above the ER. One day in this hospital became two, then four, and then eventually a week, then more than a week. No headache center evaluation, no mention of it at all. I brought up the headache center to every medical professional I met, asking how I could get in. No one knew. The first attending physician I had in this hospital converted my status from observation to inpatient, then told me that he was doing me a favor, implying that headache patients don’t usually get the privilege of inpatient status. The neurologist I worked with there kept insisting I go to his office as an outpatient, while I kept insisting that I wanted to get into the headache center. This hospital also attempted to discharge me without medication that worked, just like in the ER. And yet again, my discharge got canceled shortly after I signed the paperwork, when I was in the middle of another headache attack.
Then a nurse informed me that I was actually on the same floor of the exact hospital where the headache center’s inpatient treatments are done! (The nurses always have the inside scoop.) I thought it was a miracle- I could literally stay exactly where I was and be in the headache center! I asked my doctor how to transfer my care to be under the headache center, but he didn’t know. I asked anyone who breathed how I could get into the headache center. Eventually, I got some sort of response: the head of the headache center’s inpatient treatment unit was on vacation. And that settled it, apparently.
I renewed my efforts after I transferred back to the university hospital, as there were many more doctors to constantly ask/annoy, and they were all great at listening. I became a headache center broken record. The doctors were either more sympathetic or more exhausted by my constant asking, so they called the headache center head to ask what to do. (How many headaches does a headache center head help if a headache center head could help heads?) The headache center head said that it is impossible to get into the headache center as an inpatient. You have to leave the hospital, get a referral, and wait, with all of the people who can manage their pain at home. Never mind that I wasn’t home yet, because there was still no medication that worked to manage my pain.
The first thing I did upon getting home with the long-searched-for medications in hand was shower. Then I slept for a long time. Then I called the headache center. I verified the neurologists at the hospital had also sent a referral, which meant I had two referrals, so I was ready to make my appointment. But they told me on the phone that there was no referral in the system. I didn’t know what to do. I considered going back to the hospital and finding the neurologist naggle and having one of them send another referral as I watched closely over their shoulder. But I waited for the appointment with my primary care doctor instead, because this seemed more…reasonable. The entire past two weeks had been so extremely reasonable, after all, so there was no point in being unreasonable.
My primary care doctor put in referral number three, and told me why the first two referrals had silently disappeared: the headache center required that referred patients not take opioids regularly, because they can cause rebound headaches and increased pain in the long term. One of the two medications that helped my headaches is an opioid. So there I was, a twenty-something who had NO desire to be addicted to opioids but who desperately needed them to manage my pain, being told I needed to either use the opioids way less often or go back to sitting in the neurology office. I slowly weaned down on the opioids. That left me with mostly unmanaged severe headaches and one other medication, which diminished them just enough for me to be able to sleep at night, and a successful referral to the headache center.
I called the headache center again, ready to take their soonest appointment. They told me the soonest was three months away, but I could go on the cancellation list. I put their number in my phone so I would be sure to answer if they called with a last-minute opening. In the meantime, I managed. I discovered acupuncture, started physical therapy, did an occipital nerve block, and got a (very stylish) ice pack that wraps around my head to numb the pain. I had to go to the ER twice because things got out of control. My headaches started waking me up in the middle of the night again.
Waiting while in pain feels different from ordinary waiting. There was more agonizing, more time spent wondering if I could have done something differently to unlock some secret shortcut, more energy going to doctors and trying to come up with new options that may make me feel better for even a little while. It was lots of work and little progress. But, while sitting in church during one of the many Sundays I was waiting, my pastor talked about how sometimes when we feel like we’re going nowhere, we are actually exactly where God wants us to be: in a place that lets us grow deeper.
So as I felt the pain of waiting, I spent some time seeking out online communities of headachey people, primarily on Twitter and Reddit. Reading the experiences of others helped me grow deeper in thankfulness. I am very fortunate to have access to good medical care, and to have many doctors who have advocated for me along this long road. My options are well covered by an insurance plan, and I live in the same city as the headache center and all of the other doctors I’ve seen. The road is much longer and much harder for many other people in chronic pain, as many find their treatment options to be prohibitively expensive or too far away from home, or they can’t find a doctor who takes their pain seriously. Learning from the headache community also grew in me a deeper passion for seeking change. There are only 564 headache specialists in the entire U.S. for 47 MILLION people with migraine headaches. Also, no one knows what actually causes migraines. I’ve felt these facts deeply, and I’m just now learning what I can do to enact change, or at least help bear the burdens of waiting and uncertainty alongside my other headachey friends.
The headache center never called with a cancellation, so I bided my time. The long-awaited day came, and I found myself in a waiting room full of other people who looked normal, like I looked. But all of us live lives of invisible pain, having our pain minimized, feeling chronic illness imposter syndrome, and getting our options limited at every turn. So it was nice to finally be there, in spite of the fluorescent lighting in the waiting room, which is notorious for triggering migraines. I guess I should fill out their survey and suggest they add lamps and cozier furniture.
And, for those who are wondering about the actual result of my headache center appointment…they approved me for the much-sought-after inpatient treatment! Back to the hospital I go. I’ll need to follow my trusty hospital tips, and I also plan to re-read the entire Harry Potter series while there.
If my story touched you, please consider lending your voice on a piece of proposed legislation that is soon to be voted on by the U.S. Congress. I and the headache community would like to have this bill create more funding for training headache specialists. Click here to learn more, and then contact your representatives or your senators and ask them to supporrt AND amend the Opioid Workforce Act (H.R.3414/S.2892) to ensure federal funding of UCNS accredited Headache Medicine Fellowships. Adding a little blurb in your note about what you’ve learned from my story would make a nice personal touch 🙂