Excruciating Pain: A Personal Battle Against the Puzzling Pain of Cluster Headaches
It began on a overcast Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden sensation erupted behind my one eye. It was followed by quick shocks, like lightning bolts. As each class progressed, the pain subsided and then returned with greater intensity. Four times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.
The attacks returned frequently that fall, and once more in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-blown agony in class by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches often start with intense discomfort behind a single eye that persists for three hours.
About one in 1,000 individuals are affected by the condition, and men are more often affected. Attacks typically begin with sudden, severe agony focused on a single eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; others have continuous attacks, characterized by the absence of long pain-free periods.
What connects sufferers is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster patients reported suicidal thoughts during bouts; the figure dropped to 4% when they were not in pain.
One patient, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to many triggers, 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 mistook her episodes as intoxicated behavior. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a national hospital.
Still, the failure to organize daily activities around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been described throughout history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his victims' heads.
Ancient healing texts propose bizarre treatments for what some experts would describe as a migraine. In the medieval times, migraine was identified as a separate condition, with treatments including herbal concoctions to other, more superstitious cures.
It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.
The disorder were only officially classified by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent experts in diagnosing the condition note this.
In the late 1990s, scientists published the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
In spite of such progress, identification remains slow. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.
Neurologists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.
A charity trustee, 78, has experienced the condition for most of her adult 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 believes dentists still need greater awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an bout in 2021; a calm advisor talked me through oxygen therapy and medication until the episode passed.
National guidelines on management advise that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of some people.
But leading specialists argue the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short cycles with infrequent episodes are managed with acute therapy alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that decreases nerve activity.
The national guidelines need revising to reflect a
