Dr. Clay sat looking at this his computer screen. He was not my favorite of the two doctors at my primary care office, but Dr. Baylor was not available and I needed to see someone quickly. My cluster headaches had returned after several years of remission. I needed to start some preventative meds before they spiraled out of control. I hadn’t seen a doctor about the headaches since we moved to rural Virginia.

After some awkward pleasantries, Dr. Clay read through my chart then looked up at me. He asked if I had received the results from my routine mammogram. I said I hadn’t. He looked at his screen, told me everything was fine, and then looked back up. He wasn’t looking at me, but in my general direction as he asked, “And how are your…um….” He made a cupping motion over his chest with a slight squeeze as if he were testing tomatoes for ripeness. Wonderful. My doctor couldn’t say the word breasts to a female patient.

I indicated that they were fine and moved on to the real reason for my visit. I explained my history with cluster headaches, that I have had them for 15 years and have tried many different medications to both prevent and abort the headaches. Cluster headaches are a rare form of headache that causes excruciating pain centered around one eye. I get them on the right side. They are considered the worst pain known to medicine, and there are few, if any, effective treatments. The pain is often so severe that those suffering cannot hold still while it happens, instead pacing, rocking, or even banging their head against objects to distract from the searing, piercing pain in their eye.

I told Dr. Clay that I was diagnosed by a neurologist in Atlanta 15 years ago. I gave him a list of which medications worked and which did not, highlighting the need to start these meds soon if there was a chance of them working. Narcotics are not at all effective for cluster headaches, and I did not ask for them. What I needed was Imitrex injections and a prescription for oxygen, the only effective abortive treatments.

Dr. Clay listened. Well, I’m being generous; he sat there while I spoke. When I finished, he thought for a moment and then spoke in a patronizing tone. “I don’t think cluster headaches is what is going on here. Perhaps you are just stressed. Have you tried taking some aspirin?”

Tears rushed to my eyes, and I burned with anger. I calmly replied, “Aspirin is not effective for these headaches. I have tried. It doesn’t help.”

He repeated himself: “You are probably just stressed, maybe you should try some relaxation techniques. We could try Excedrin if you want something stronger.”

I fought back more tears. “No. I have been diagnosed with cluster headaches. They are back, and I need to take something to prevent them. I also need something to stop the attacks when they come.”

He shook his head. “I don’t want to prescribe something stronger until we know you are really in pain.”

Dumbfounded, I couldn’t respond. Another doctor dismissing a woman’s experience of pain. I sat on the exam table, trying not to cry, trying not to scream, afraid of the headache that would hit me later that afternoon. I knew there was nothing I could do or take to prevent the torture that awaits me. He told me again to try some Excedrin, and if I was still having headaches in a couple of weeks to come back in and we could see about something else. I nodded and left the room, defeated.

Since cluster headaches are uncommon, most doctors may only see a patient like me one time throughout their career. The condition is difficult to treat even for experienced headache specialists, let alone a rural primary care provider. However, I had never had someone so summarily dismiss my pain as this doctor. It turns out I’m the lucky one. Cluster headache patients are regularly dismissed, misdiagnosed, poorly treated, and labeled as drug seekers. Women, especially, have a difficult time getting an appropriate diagnosis. Cluster headaches were once thought to be eight times more common in men than women. More recent research shows the ratio is more like two or three to one, yet many doctors still mistakenly believe only men get cluster headaches.¹

 

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It took me a month to work up the courage to find a new doctor. Every day of that month I experienced excruciating pain that I could not treat effectively with the over-the-counter medications, but I was too afraid of being dismissed by another doctor. When the headaches became so unbearable that I could no longer ignore them, I found a new primary care provider, a woman, who believed me and could even say the word breasts. Catherine prescribed the appropriate treatments, sent me for an MRI and referred me to a neurologist.

The soonest I was able to get a neurology appointment was in two months. The neurologist was a third-year resident at the closest medical center. I gave Dr. Dale the same headache history and wrote down a list of all my previous medications and whether they were effective or not. Dr. Dale agreed with the cluster headache diagnosis but mentioned that it is less common among women. At the end of the appointment, he laid out his treatment plan. Aside from adjusting the dosage on one medication that Catherine had already prescribed, he added two meds from my list of meds that were not effective.

I tried to speak up for myself. “I already tried those two meds in the past, and they were not effective,” I said.

“Well, you haven’t tried them at the dosages I’m prescribing, so that’s why they weren’t effective,” he said.

“But I don’t like the way indomethacin makes me feel. I get jittery and anxious while taking it. And it doesn’t help.”

“That’s not a side effect of this medicine; it was probably something else that made you feel that way. I want you to take it for at least a month and see how it does.”

He effectively shut me down and stuffed me into his neat little cluster headache treatment box. I dutifully took the two meds, but the attacks only grew worse. Along with the pain, I was experiencing debilitating depression and anxiety. After a month, I tried to get a follow-up appointment with him to see about adjusting the meds or trying something different, but the next available appointment was four months away. Four months with cluster headaches is an eternity.

Catherine adjusted my meds, took me off the indomethacin, and prescribed something to treat the depression and anxiety. She also helped me find a new neurologist who was available to see me the following week. When Dr. Washington walked in the room, the first words out of his mouth were, “Women don’t get cluster headaches, what makes you think you have them?” By this point, I had been experiencing eight to ten attacks daily for nearly eight months.  I was depressed, anxious, and experiencing PTSD-like symptoms from the daily attacks. I was not about the let another man tell me I was not in pain. I also was not about to leave without getting the treatments I needed.

My partner was with me at the appointment, so she could hear what he had to say and help me advocate for myself if needed. After I explained my headache history, my partner described how I looked and acted during an attack. I showed him a picture I had taken of myself during the middle of an attack. The photo clearly demonstrated the clinical features of cluster headache, but still, he wasn’t convinced.

He asked me to get on the exam table while he conducted a neurological exam. His attention shifted to my partner for a moment, asking her about whether I was agitated during attacks. He turned his back toward me, and an attack came on suddenly. My right eye became red and swollen, the eyelid twitching and tears flowing from that eye. I began to shake my head violently to the affected side. He turned around, saw me, and asked, “Are you having a headache now?” I managed to squeak out a yes. He stood and stared at me for a moment, then turned to ask my partner some more questions while I continued to thrash in pain behind him.

The attack was short-lived but convincing enough to shatter Dr. Washington’s misconception about women not getting cluster headaches. His whole demeanor changed after that. We talked about treatment options, and he started to suggest Ajovy—a drug from a promising new class of headache meds. Emgality is the only one approved by the FDA in the treatment of cluster headaches. Many cluster headache patients were getting excellent results with it. Some were pain-free after only one round of injections. When Dr. Washington suggested Ajovy, I said, “I’d like to try Emgality, since that is the one approved for cluster headache.”

He scoffed. “None of them have been approved for cluster headaches.”

“Yes, Emgality was approved by the FDA in June.” I surprised myself by being firm and direct.

He searched on his computer and, after confirming I was correct, responded, “Hmm, you learn something new every day, I guess.”

Realizing I needed to take control here, I pressed on. “I also want to get a prescription for oxygen.”

“Well, you knew exactly what you wanted to get out of this visit, didn’t you?”

It was the most forceful I had ever been in a doctor’s office, but I was learning that if I didn’t take control of my health and learn everything I could about this condition, no one else was going to do it for me.

As it happened, I had a follow-up visit with Catherine that evening. She asked me how the appointment with the neurologist had gone. I told her about it all, including his comment about women and cluster headaches. She laughed and admitted she’d reviewed his note about the visit, and it read, “While women don’t typically get cluster headaches, I believe that she does.” She allowed that when she read it her first thought was, “Oh no, don’t give Karen that sexist bullshit. I hope she didn’t just walk out.” We shared a hearty laugh. I knew Catherine was not an expert in cluster headaches; before me, she had only ever treated one other patient with them. Her willingness to learn and to keep coming up with strategies to treat it was more valuable than a doctor who thought he knew it all but clearly didn’t. More than anything, it was her compassion, her willingness to listen, and the way she saw me as a whole person, not merely a headache disorder, that assured me that she was in my corner, fighting for me.

Even with Catherine’s help, it was becoming clear that my cluster headaches were becoming chronic and intractable. Her compassionate care helped me continue fighting, but we both knew I needed a real expert on this condition. I researched on my own and found a headache clinic in another state with a good track record for treating clusters. Catherine sent in a referral for me to get in as a patient with them. I made travel plans and was at the headache clinic two weeks later. During my appointment with Dr. Urban, I told him about my interaction with Dr. Washington and his remark that women don’t get cluster headaches. He responded, “And did you ask him where he got his medical degree?” He went on to tell me how he sees approximately 150 female cluster headache patients every year. He showed me a video of a woman having an attack that he uses when he lectures on the condition. At the end of the appointment, he admitted me to their inpatient program, and I was able to receive treatments that gave me the most relief I had experienced in more than a year of suffering.

 

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I know it is not a fruitful game to play with myself, but I sometimes wonder what would have happened if Dr. Clay had taken me seriously. If I had received proper treatment when the attacks first began, would I have suffered as much as I had over the last year? There’s no way to know. Cluster headache is an unpredictable condition. Any treatment I tried could have been ineffective. I do know this. Dr. Clay’s dismissiveness toward my pain cost me a month of daily excruciating attacks that were completely untreated. Dr. Dale’s refusal to listen to my experience of medications exacerbated my already fragile emotional state. Dr. Washington’s closed-mindedness and lack of current treatment knowledge could have cost me more time accessing proper treatment. Fortunately, I had learned how to advocate for myself by the time I saw him.

Their bias is inexcusable. A woman’s experience of pain should be taken seriously and her suffering believed. But even in the face of their bias, some good came out of all this. Dr. Clay’s dismissiveness eventually led me to Catherine, the best primary care provider I have ever had. Dr. Dale’s refusal to listen taught me that I need to be firmer about the treatments that are effective for me. Dr. Washington’s lack of expertise showed me that I need to learn as much as I can about this condition and ultimately led me to finding Dr. Urban, who finally prescribed the treatment I needed.

I still have daily headaches, though they are better controlled. Knowing I have two providers who believe and support me in the face of those headaches is the best medicine I have tried.

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¹ Chronobiology differs between men and women with cluster headache, clinical phenotype does not. Nunu Lund, Mads Barloese, Anja Petersen, Bryan Haddock, Rigmor Jensen. Neurology Mar 2017, 88 (11) 1069-1076; DOI: 10.1212/WNL.0000000000003715

 

Karen Mann is a farmer and pastor living in rural Virginia with her partner and two children. She raises a variety of vegetables for farmer’s markets plus a handful of goats and chickens. Most of her writing comes in the form of sermons and reflections on the intersections of food and faith. She recently began writing about her experience with chronic cluster headaches.

Photo by Hailey Kean on Unsplash