How A Doctor Giving Up on Me Led to Better Care Somewhere Else

Everyone is naïve at the beginning of their headache journey. Before I found a headache specialist and wrote a book on cluster headaches, I foolishly believed in a cure. My episodic cluster headache cycles only lasted two weeks in the beginning, which made me think that each treatment was the end-all for my pain, including Benadryl (ha!).

How were my first encounters with my headache specialist?

My treating physician practiced at a university hospital. I quickly grew to like her because she treated me like an adult (I was 18) and made an effort to investigate my condition. Back then, everyone told me I had migraines (despite a cluster headache diagnosis from an out-of-state neurologist). But this doctor? She believed me when I said, "I have cluster headaches."

She took the time to research treatment options and told me to take Benadryl. At first, I scoffed. It couldn't be that easy, I thought. Though Benadryl and antihistamines are not a treatment for cluster headaches, I tried it that night. I did not have a cluster headache attack that night, and my cycle ended.

I was beyond excited that this over-the-counter medicine "cured" me overnight. I wrote this doctor a thank you note and sent a separate one to her supervisor. She later told me it was a nice gesture as I sang her praises in person.

How were my following appointments?

When the attacks came back six months later, the doctor was not as helpful. She did not want to prescribe me sumatriptan injections. I later found out that was the standard treatment, but she made me use the pills instead. I told her they didn't work. Crickets.

At the next appointment, I had an attack at the hospital. They put me in a dark room and shoved an IV in my arm full of painkillers. Dark rooms don't help cluster headaches. I don't have light sensitivity. I'd rather be at a rock concert with bright lights to distract myself from the pain. Painkillers are also not helpful for cluster headaches. So, when I told them 45 minutes later that I was still in the same amount of pain, they treated me like a drug seeker. I never wanted opioids. What I needed was high-flow oxygen or a sumatriptan injection. Instead, I got an addictive medication and was made to feel like I was faking it.

I left the hospital in tears, still in pain.

How cluster headaches get in the way of my care?

My next appointment with her was around 2 pm when my afternoon attack typically set in. Like clockwork, an icy dagger of pain stabbed my right eye and temple. I was in too much agony to safely drive myself to the hospital and called their office to cancel. The office staff told me this was my second no-show, and because of that, I was no longer her patient.

To say I was devastated is an understatement. I was beside myself in a big city with no leads on who to see next and still struggling with daily attacks.

How has my new doctor been better?

Dr. B's office (name shortened for privacy) was the first one I called. He was my lucky break. My previous doctor rushed me out of the room, but Dr. B took his time. He easily talked with me for 45 minutes during my first visit. He left the room for about a half hour and came back with printed sheets of information on cluster headaches, a prescription for oxygen, and a referral to a headache specialist. The rest is history.

Thanks to this wonderful man, I now have a good quality of life. I still cry, thinking about his kindness and the awful experience that led me to him.

The moral of this story? Don't settle for sub-par healthcare. You deserve a physician who listens to you, and I promise they are out there waiting to help.