Excruciating Suffering: My Struggle With the Puzzling Pain of Cluster Headache Syndrome
It began on a dreary weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp sensation bloomed behind my right eye. This was followed by quick stabs, similar to electric shocks. As the school day progressed, the pain subsided and then came back with increased force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.
The headaches appeared frequently that fall, and again in the spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the train, full-on agony in the classroom by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches typically begin with intense pain around one eye that persists for several hours.
About one in 1,000 people suffer by the disorder, and men are more frequently affected. Cluster headaches usually begin with abrupt, excruciating pain focused on one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.
What unites sufferers is the severity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure fell to 4% when they were not in pain.
Val Hobbs, 74, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to many triggers, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.
Her family often interpreted her episodes as intoxicated behavior. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.
Still, the inability to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.
Headaches have been described across history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.
Ancient medical records suggest bizarre treatments for what some experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more folk remedies.
It was a European physician who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.
The disorder were only officially classified by global medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the brain. Prominent experts in treating the condition explain this.
In the late 1990s, researchers published the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
In spite of such progress, identification remains delayed. One man's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple operations before finally being diagnosed in 2014, after a doctor researched his symptoms.
Neurologists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other common head pain disorders, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first go to A&E or are given inadequate therapies.
A charity trustee, 78, has suffered from the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in 2021; a reassuring advisor talked me through oxygen therapy and medication until the attack passed.
Official guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly soothes the attacks of some individuals.
But consultant neurologists believe the official guidelines need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short bouts with infrequent attacks are handled with acute therapy alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that reduces nerve activity.
The national guidelines need revising to reflect a
