Cluster headaches – debilitating, painful and little-known

Written by: Fit for Work team | Posted in: Blog

It has been estimated that 0.2 percent of the population suffer with cluster headaches and most develop symptoms in their 30s and 40s. Men are three times more likely to suffer than women. The main feature of cluster headaches is that they come in waves, are sudden and are not triggered by outside events (e.g. noise or infection). They are generally short-lived but repeated, and a cluster can last for weeks or months.

The term ‘headache’ can cover a multitude of symptoms, but cluster headaches are very specific and can be excruciatingly painful. For some people who experience cluster headaches, the pain can be so severe that they are driven to despair.

The pain of a cluster headache is regarded as one of the worst a person can experience and has been described by female sufferers as worse than childbirth. The centre of the pain is usually around the eye socket or the temple but can spread to the ear, jaw, forehead and neck. It is usually on one side of the head but can switch sides from one attack to another.

Common symptoms that doctors look for when diagnosing cluster headaches include:

  • facial sweating;
  • restlessness, such as rocking or pacing – some sufferers cry out or bang their heads in response to the pain;
  • reddening and watering of one eye;
  • runny nose or blocked nostril;
  • drooping or swollen eyelid;
  • constriction of the pupil.

Types of cluster headaches

Cluster headaches have been linked to an abnormality in the hypothalamus area of the brain. There are two types of cluster headaches:

  • Episodic cluster headaches. Attacks can be as short as 15 minutes or last as long as three hours. They come on suddenly but there is generally no trigger. They can happen once a day, but some people will get as many as eight in a day, and the outbreak can vary go on for weeks or even months. Sometimes sufferers have an idea when a headache is coming on because episodes may occur at the same time of the day and often at night. Importantly, however, the headaches will stop, often as suddenly as they started, and there will be a period of remission between headaches. The clusters come and go, maybe not returning for a year or more, but they always return. There is no cure for cluster headaches, but doctors believe they become less frequent with age.
  •  Chronic cluster headaches. Sufferers of chronic cluster headaches (some 20 percent of cluster headache sufferers) experience little or no remission and typically periods of remission will last less than four weeks in a 12-month period.

 Treating cluster headaches

The pain of a cluster headache is so great that the usual headache remedies such as paracetamol, ibuprofen and aspirin are ineffective and take too long to have an effect.

Remedies:

  • Sumatriptan injections: Self-administered and taken up to twice a day, the injections can kill a cluster headache in 8-10 minutes.
  • Sumatriptan nasal spray: This is slower to take effect than the injections but is a good option for people who do not like injections.
  • Oxygen therapy: Pure oxygen breathed through a mask for 15-20 minutes will usually relieve the intense pain.

Prevention:

Smoking is believed to aggravate the condition and alcohol is known to trigger headaches during a bout of cluster headaches. However, preventative medication, taken regularly once a firm diagnosis has been made, can also help. It may be necessary to try several different treatments before finding the most effective one.

  • Verapamil is often the first option as a preventive treatment but does involve risk to the heart. Patients will have their hearts tested by ECG before treatment and regularly during treatment. Verapamil does have side effects including constipation, tiredness or swelling of the hands and feet.
  • Lithium can also be effective, but also needs careful monitoring due to potentially dangerous toxic effects.
  • Anaesthetic injections to the back of the head to block the occipital nerves.

 Advice for employers and colleagues

The general invisibility of cluster headaches makes it more difficult for colleagues and employers to understand their severity. But to liken them to the pain of childbirth, experienced up to eight times a day, for weeks on end, can help us understand the debilitating nature of the condition. Full-time work may become impossible during an outbreak and employers will need to be understanding and flexible:

  • Remain in contact with the employee during a bout of cluster headaches.
  • Train managers to listen and support staff.
  • Offer flexible solutions in working hours, days and environment.
  • Tailor work so that lost days have minimum impact on the rest of the team.
  • Offer the expertise of occupational health professionals.

Advice for employees

Getting the right diagnosis for cluster headaches can be difficult and can take a long time. Try and get a specialist consultation with a doctor who specialises in headaches. Continuing to work while coping with persistent outbreaks of cluster headaches can also be exhausting and challenging. Get to know your rights and seek out the support of people who understand the condition. Start with the Organisation for the Understanding of Cluster Headaches (OUCH).

Fit for Work offers free, online work-related health advice and guidance to anyone looking for advice and support about an existing case of sickness absence, or about issues that may result in sickness absence. Visit the Fit for Work website or call the free telephone advice line on 0800 032 6235 (English) or 0800 032 6233 (Welsh). There is a separate service running in Scotland (0800 019 2211).

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