Unbearable Agony: My Battle With the Mysterious Pain of Cluster Headache Syndrome
It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation sprang behind my one eye. This was followed by quick stabs, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then returned with greater intensity. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.
The headaches returned frequently that autumn, and once more in spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-on pain in the classroom by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches often begin with severe discomfort around a single eye that persists up to several hours.
Approximately 1 in 1000 individuals are affected by the disorder, and men are more frequently diagnosed. Cluster headaches typically start with abrupt, severe agony around a single eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; some patients have chronic attacks, defined by the lack of long pain-free periods.
What unites sufferers is the intensity. One study scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the figure fell to four percent when they were not in pain.
Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, like many causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the transport home.
Her relatives often interpreted her attacks as intoxicated behavior. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a specialist hospital.
Nevertheless, the inability to plan daily activities around erratic pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been documented throughout history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the disease to an malevolent spirit who attacked his victims' heads.
Ancient medical texts propose bizarre remedies for what modern experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with therapies including bloodletting to other, more folk remedies.
It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.
The disorder were only formally classified by global medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the head. Prominent experts in treating the condition explain this.
In 1998, researchers published the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
In spite of such progress, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before finally being correctly identified in 2014, after a doctor looked up his symptoms.
Neurologists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.
A charity trustee, 78, has suffered from cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer guided them through oxygen therapy and medication until the episode passed.
Official guidance on treatment advise that sufferers are offered high-dose oxygen therapy 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 soothes the attacks of well-known people.
But leading neurologists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Short cycles with infrequent attacks are handled with acute treatment only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that decreases nerve activity.
The national guidance need revising to reflect a
