Excruciating Pain: A Personal Struggle Against the Puzzling Pain of Cluster Headaches
It began on a overcast Monday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation erupted behind my one eye. This was followed by quick jolts, reminiscent of electric shocks. As each class came and went, the pain subsided and then returned with increased force. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unbearable.
The headaches returned frequently that fall, and again in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the train, full-on agony in the classroom by 9.30am. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches often begin with severe pain around one eye that lasts up to three hours.
About one in 1,000 people are affected by the condition, and males are more often affected. Cluster headaches typically start with abrupt, excruciating pain focused on a single eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, characterized by the lack of extended symptom-free periods.
What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another discovered 64% of cluster headache patients reported thoughts of self-harm during bouts; the number fell to four percent when they were pain-free.
One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to many triggers, made things worse. After having alcohol at her school leaving party, she recalls hardly 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, 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 absences during attacks. Her definitive identification came in 2002 at a specialist neurology center.
Still, the inability to organize daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been described throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an malevolent entity who afflicted his victims' heads.
Ancient medical records propose unusual treatments for what some observers would classify as a migraine. In the medieval times, migraine was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more folk remedies.
It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.
Cluster headaches were only formally recognised by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the head. Prominent specialists in diagnosing the disorder explain this.
In the late 1990s, researchers released the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in 2014, after a doctor looked up his symptoms.
Specialists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which side do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate therapies.
Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the episode passed.
National guidance on treatment recommend that patients are offered high-flow oxygen and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known individuals.
But consultant specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Short cycles with occasional episodes are managed with abortive therapy only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that decreases nerve signals.
The official guidelines need revising to reflect a
