Full-Blown Agony: My Struggle Against the Mysterious Suffering of Cluster Headache Syndrome
It began on a overcast weekday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain sprang behind my one eye. It was followed by rapid jolts, like lightning bolts. As the school day came and went, the discomfort eased and then returned with increased force. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unrelenting.
The attacks returned frequently that fall, and again in the spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the routine: aura in the shower, early twinges on the commute, full-blown agony in the classroom by mid-morning. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition typically start with intense pain behind a single eye that persists for several hours.
About one in 1,000 people suffer by the condition, and men are more frequently affected. Cluster headaches usually start with abrupt, excruciating agony focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, characterized by the absence of long pain-free periods.
What connects patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or other conditions. A separate found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were not in pain.
One patient, 74, a long-term patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like many triggers, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.
Her family often interpreted her attacks as drunken behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.
Nevertheless, the failure to plan daily activities around erratic attacks took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented across the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the disease to an evil spirit who afflicted his victims' heads.
Historical healing records propose unusual remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.
It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.
The disorder were only formally recognised by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the head. Leading specialists in treating the condition explain this.
In 1998, scientists released the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
Despite such progress, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being diagnosed in 2014, after a physician looked up his complaints.
Specialists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable therapies.
A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She believes dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the episode passed.
National guidance on treatment recommend that patients are offered high-dose oxygen and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.
But leading neurologists argue the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout determines the approach.” Brief bouts with infrequent attacks are managed with abortive treatment alone. Longer or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve signals.
The official guidance need updating to reflect a
