Moving Beyond the Fight: A Mom’s Discovery of Pain’s Unlikely Gift
Anna Williams, 45, refers to herself as “a farm kid” when describing her childhood. Growing up in Buffalo, West Virginia, she hoed weeds, topped tobacco tassels, nurtured plants in the family’s greenhouse, and sold produce at farmer’s markets. These formative years prepared the single mom of two for her adult life, one that demands fierce resolve to navigate the chronic pain of migraine, cluster, and trigeminal neuralgia (TN).
Today, living in New Albany, Indiana, Anna continues to work hard, cultivating and harvesting her own well-being. She has suffered through, fought, and ultimately found some acceptance of the debilitating brain disorders that she first experienced at age 10, pain she would endure for another 13 years before receiving a first definitive diagnosis.
Uncovering the problem, layer by layer
With her signature pluck, Anna set out to receive the care she needed: “I didn’t get diagnosed officially until I got my own job and my own insurance, and I took myself to the doctor and said ‘I have these really bad headaches.’”
It was gratifying to have her pain validated, but her symptom relief was inconsistent. For a while, she was helped by a calcium channel blocker medicine that prevents migraine by enlarging blood vessels. However, over the years, this medication stopped working and her pain grew more debilitating. Anna suspected something other than migraine was causing this new pain, even as doctors were skeptical.
Unlike migraine, which typically lasts 4-72 hours and includes symptoms such as, noise and smell sensitivity; aura (sensory disturbances that may include blind spots and flashes) and nausea. Anna’s new pain occurred every day at the same time. In the case of migraine, retreating to a cool, darkened room and laying prone softened her symptoms. However, this onslaught, which she describes as “no other pain I’ve felt in my life,” worsened if she treated it like migraine: “The pain would be so bad, I’d want to curl up in a ball, but the moment I would sit, the pain would escalate.”
Amid an episode she suddenly remembered how her grandfather paced the floor with an icepack clamped on his eye; he’d tell his granddaughter that the sensation felt like a hot poker relentlessly shoved into his socket. She shared other symptoms with her grandfather, such as unilateral eye watering and drooping, prompting her to realize she was suffering from cluster, a brain disorder estimated to affect only 0.1% of the population.
Undaunted by the headache specialist’s doubt, thoughts of her grandfather compelled Anna to forge onward for relief.
However, she’d begun to experience yet another type of painful sensation, which she initially thought was a toothache. In 2017, thinking the third layer of pain came from a broken filling, she had it repaired. The pain persisted. She returned to the dentist desperate for him to pull the tooth. In working to locate the source, they discovered that the pain did not reside in a specific tooth; rather, the burning ache was diffused throughout her jaw.
She sought a neurologist who diagnosed her with trigeminal neuralgia (TN). Among other medications, he prescribed antidepressants and anticonvulsants. All led to intolerable side-effects, including suicidal ideation. Anna pleaded with her general practitioner to refer her to a new neurologist, and she connected her with specialist Dr. Joseph Seipel, someone who is now a lodestone of resources for Anna.
Confronting the trifecta
Seipel acknowledged the three strands of the pain tangle. “He sat down and talked to me. That was huge. We went over my trifecta—that’s what he called it—of migraine, cluster and TN.” When she’d arrived in his office she was not taking preventives or abortives, and on account of her severe reactions to the majority of FDA approved treatments, options were limited. Having researched potential treatments, she asked him if she could try oxygen. Seipel agreed that oxygen treatment would be the best abortive but doubted she’d get it with Medicare.
Instead, he introduced her to a new preventive medicine, which had recently been FDA approved. Initially, the solution worked, alleviating Anna’s migraine and cluster attacks and allowing her relief from the constant nerve assault of the TN. Nonetheless, Anna continued to suffer. She returned to Seipel to ask for an oxygen prescription, and he complied: “At this point he knew me. Back when he told me it would be difficult, he didn’t know I understand how to fight.”
But, Seipel was right: it was hard for Anna to get the oxygen. Turned down because of insurance, she called several private oxygen companies, offering to pay cash. However, all required that she purchase other expensive—and in Anna’s opinion—unnecessary devices in order to then secure the oxygen. (To read more about oxygen therapy for cluster, go to page 15.) Finally, she found a small independent company that agreed to her conditions: home delivery of the oxygen for $10 a tank. She returned to Seipel and told him where to send the script. He did, and within a few days she received the holy grail of abortives—on Anna’s terms.
An antidote at his feet
Fittingly, the oxygen became a sort of tribute to her grandfather, a welder, the profession her father also chose. In her quest for an affordable alternative, Anna said she was ready to get the oxygen from her father since the oxygen that welders use is exactly the same used for treatment: “You can’t go to a welding supply store and say I need oxygen that I am going to use medically. That’s illegal. But it’s the same thing. Dad said if he had bad O2, he’d get a bad weld. It’s filled from the same tank.”
Anna’s grandfather suffered from episodic clusters for years not knowing that the antidote was in his garage, often truly right at his feet. She sighs, her otherwise spry eyes saddening: “[He] had it sitting at work and he never knew. That’s why I’m so vocal about it because my grandpa suffered so much more than he ever needed to.”
With Anna’s pain and work has come an unexpected benefit, one that she relies on as much as her O2 tanks: an acceptance of the present. In the throes of back-to-back attacks, she knows her spiraling thoughts and subsequent terrifying emotions compound the pain: “I’ve got two kids. What am I going to do? I am a single parent. How am I going to do this if it never ends? So that’s where mindfulness comes in. It helps me survive a little better.”
Yet, in spite of having episodes of cluster attacks in recent months, Anna is far more than surviving. She is on the administrative team for migrainemeanderings.com, where she is part of a project called Empowering Patient Voices; she writes for Migraine.com, and recently participated in Headache on the Hill, an annual advocacy event in Washington D.C. (this year held virtually).
She also creates meaningful experiences alongside her daughters, Xondrais, 16, and Kyriana, 14. They go on “microadventures,” to nearby Deam Lake or their favorite spot—Mount St. Francis, an active monastery with 400 acres of trails and a walking labyrinth. The three have check-ins regularly to ensure everyone is prepared for the inevitable episodes. Xondrais and Kyriana fix meals when Anna has incapacitating attacks. Sometimes they guide their mom back to her room, when she tries to rejoin the throng too early.
Today, Anna continues to experience a life that calls for fight, but in the process of walking through this pain, she’s also developed a sustaining peace: “I always felt I needed to do, do, do, run, run run, but… I love every moment with my kids. I’ve learned, and we’ve learned, to enjoy what we have.” Anna pauses before reflecting on the hard gift of perspective that her pain has given her: “In some ways I am sad I didn’t learn that sooner, but I am glad I have it now.”