Excruciating Agony: My Battle Against the Enigmatic Suffering of Cluster Headaches
It was a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden sensation sprang behind my one eye. This was followed by quick shocks, similar to lightning bolts. As each class progressed, the discomfort eased and then returned with increased intensity. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.
The attacks appeared frequently that autumn, and again in spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches often start with severe discomfort around one eye that persists up to three hours.
About 1 in 1000 people suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically begin with sudden, excruciating pain focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic bouts; others have continuous attacks, characterized by the absence of extended symptom-free periods.
What unites sufferers is the severity. One study scored the pain at 9.7 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients reported suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.
Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like many causes, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.
Her relatives often interpreted her attacks as drunken behavior. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a national hospital.
Nevertheless, the inability to organize daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described across history. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the disease to an malevolent entity who attacked his sufferers' heads.
Ancient healing records propose bizarre treatments for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies including bloodletting to other, more superstitious remedies.
It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.
Cluster headaches were only officially recognised by international medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the brain. Prominent specialists in treating the disorder note this.
In 1998, scientists published the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, featured in a prominent journal, showed increased activity 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 slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being diagnosed in 2014, after a physician researched his symptoms.
Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first arrive 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 has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in 2021; a calm advisor guided them through oxygen therapy and drugs until the episode eased.
National guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of well-known individuals.
But consultant neurologists believe the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Brief bouts with infrequent attacks are managed with acute therapy alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the pain is that reduces nerve signals.
The national guidelines need revising to reflect a
