Unbearable Agony: My Fight With the Puzzling Suffering of Cluster Headache Syndrome
It began on a dreary Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense pain erupted behind my right eye. It was followed by quick stabs, similar to electric shocks. As each class progressed, the pain eased and then came back with increased intensity. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.
The headaches appeared frequently that fall, and again in spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-blown pain in class by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.
This condition typically start with intense pain around one eye that lasts for three hours.
About one in 1,000 individuals are affected by the disorder, and men are more often diagnosed. Cluster headaches usually start with sudden, excruciating pain focused on a single eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; others have continuous cluster headaches, defined by the lack of long symptom-free periods.
What connects patients is the intensity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.
One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to many causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.
Her relatives often interpreted her episodes as drunken behavior. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.
Nevertheless, the failure to plan daily activities around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.
Headaches have been described across history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.
Historical medical texts suggest unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.
It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.
The disorder were only formally classified by international medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the head. Prominent experts in treating the disorder explain this.
In the late 1990s, researchers released the findings of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
In spite of such progress, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in 2014, after a doctor looked up his complaints.
Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do signs occur? For how much time? What season? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. But many first go to A&E or are given inadequate treatments.
A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, 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.
Official guidelines on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.
But leading neurologists argue the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle determines the treatment.” Brief cycles with occasional attacks are managed with abortive treatment only. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that reduces nerve signals.
The official guidance need revising to reflect a
