Excruciating Pain: A Personal Struggle With the Puzzling Suffering of Cluster Headaches
It was a gloomy Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sudden pain erupted behind my one eye. It was followed by rapid jolts, reminiscent of lightning bolts. As each class came and went, the discomfort eased and then returned with greater force. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unbearable.
The attacks returned repeatedly that fall, and again in the spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches often begin with severe discomfort around one eye that persists for several hours.
About 1 in 1000 people suffer by the condition, and men are more often affected. Attacks typically begin with sudden, excruciating pain focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in periodic cycles; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.
What connects patients is the severity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the figure fell to four percent when they were pain-free.
Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.
Her family often interpreted her attacks as intoxicated behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.
Nevertheless, the inability to organize daily activities around erratic pain took its effect. 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 paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.
Headaches have been described across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the disease to an malevolent spirit who afflicted his victims' heads.
Historical healing texts propose bizarre treatments for what some observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.
It was a European physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only formally recognised by global medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the head. Leading specialists in diagnosing the disorder explain this.
In the late 1990s, researchers released the findings of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.
In spite of such advances, identification remains delayed. One man's attacks started in 1986 and felt like “a modelling 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 recently, after a doctor looked up his complaints.
Specialists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist 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 the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need greater education. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm volunteer talked me through oxygen therapy and medication until the episode passed.
National guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of well-known people.
But leading specialists argue the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Brief bouts with infrequent attacks are managed with acute therapy only. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve activity.
The national guidance need updating to reflect a