Excruciating Suffering: A Personal Fight With the Mysterious Suffering of Cluster Headaches
It was a dreary Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain bloomed behind my one eye. It was followed by quick shocks, reminiscent of lightning bolts. As each class came and went, the pain eased and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unrelenting.
The headaches returned frequently that fall, and once more in spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the shower, early pangs on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically start with severe discomfort behind one eye that persists up to several hours.
About one in 1,000 people suffer by the disorder, and men are more often affected. Attacks typically start with sudden, excruciating pain focused on one eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in periodic cycles; others have chronic attacks, characterized by the lack of extended pain-free periods.
What connects patients is the intensity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. A separate found 64% of cluster headache patients reported thoughts of self-harm during attacks; the figure dropped to 4% when they were pain-free.
One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to several causes, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.
Her family often interpreted her attacks as drunken behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.
Nevertheless, the failure to organize life around unpredictable attacks took its toll. She especially 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 worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.
Historical healing texts propose bizarre treatments for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies including bloodletting to other, more superstitious remedies.
It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.
The disorder were only formally recognised by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the brain. Leading specialists in treating the condition note this.
In the late 1990s, scientists published the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being diagnosed in 2014, after a doctor looked up his symptoms.
Specialists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He works by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given inadequate therapies.
A charity trustee, in her late seventies, has suffered from cluster headaches 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 molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an bout in 2021; a calm volunteer talked them through oxygen treatment and medication until the episode passed.
National guidelines on management recommend that patients are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of some individuals.
But leading specialists argue the guidance need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout determines the treatment.” Short bouts with infrequent attacks are managed with acute therapy alone. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve signals.
The national guidelines need revising to reflect a
