Cluster headache

One of the most painful conditions someone can have

What is cluster headache?

Cluster headache is a rare type of headache that is more common in men than women. It most commonly starts when people are in their 30s and 40s (but can affect people at any age).

The main symptom is an excruciating headache on one-side of your head, often around the eye. It most often occurs in cycles or clusters.

Symptoms

Cluster headache features a severe headache often described as ‘boring’,  burning or piercing. It comes on suddenly, often without warning and only affects one side of the head (although it can change sides). It usually occurs behind or around your eye.

You may also experience one or more of these:

  • red or watering eye
  • drooping or swelling of the eyelid
  • a smaller pupil
  • sweaty face
  • blocked or runny nose
  • restlessnesspeople often pace, rock back and forth or hold their head.

Attacks usually last between 15 minutes and three hours. You may have multiple attacks a day, up to eight for some people.

Many people find attacks come on at night, and you may wake up with it in the middle of the night.

Some people do experience nausea and sensitivity to light during cluster headache. Some people have aura, but this is considered rare.

The pain usually ends suddenly. Most people are pain free but exhausted after an attack

Pattern of attacks

You’re likely to experience bouts of frequent attacks (cluster periods) which last from weeks to months. These are then followed by a period of remission where you have no headache for months, or even years.

During a cluster period the headaches can occur every day, every other day and sometimes many times a day. It can also occur at the same time of day.

You may find the start of the cluster, and the duration is consistent from one bout to another. Some people experience cluster headache seasonally – during the spring or autumn, and at the same time each year.

Cluster headache can be episodic or chronic:

  • episodic cluster headache – bouts last from two weeks to three months (sometimes up to a year) and most often occur once every one or two years.
  • chronic cluster headache – persistent attacks for more than a year without remission, or remission lasts less than three months. Up to 2 in 10 people with cluster headache have chronic cluster headache.

Cluster headache tends to get better with age, with people having less frequent bouts and prolonged periods of remission.

What causes cluster headache?

It’s not clear what causes cluster headache. However, it’s thought to be linked to the hypothalamus. The hypothalamus is the part of the brain that is responsible for a range of bodily functions including body temperature, thirst, sleep cycles, blood pressure and heart rate. For some people there may be a family link. Often people who develop cluster headache are smokers.

Diagnosing cluster headache

There is no test for cluster headache. Usually your doctor will make a diagnosis by:

  • asking you about your symptoms and history of headache. It can be helpful to keep a headache diary detailing your symptoms.
  • performing a neurological examination.
  • sending you for further tests including a brain scan to rule out other conditions.

People with cluster headache are often referred to a consultant neurologist or headache specialist for review and treatment.

Treatment for cluster headache

There is no cure for cluster headache. Treatment for cluster headache falls into two categories:

  • Acute treatment to stop an attack when it’s happening.
  • Preventive treatment to decrease the severity and prevent attacks.

Acute treatment

The main acute treatments for cluster headache are:

  • Sumatriptan, 6 mg injection provides relief within 15 minutes
  • High flow Oxygen, 100% at 7-15 litres/minute for 15-20 minutes is effective at stopping attacks.
  • Some people who can’t tolerate these or find them ineffective may benefit from a triptan nasal spray – either sumatriptan or zolmitriptan.

gammaCore can be used as an acute or preventive device treatment. Your doctor will discuss how to use this effectively if they think it would be suitable for you.

Preventive treatment

Verapamil is the preventive treatment of choice for cluster headache. If you are prescribed this you will need to monitored as it can cause heart problems in some people.

Besides verapamil , other options include:

  • Greater Occipital Nerve (GON) block – has been found to be effective in cluster headache and often provides relief while finding other long-term treatments.
  • Corticosteroids – these can provide short-term relief. They shouldn’t be used long-term and are often used while finding other treatments that work.

Other things that may be effective include lithium, melatonin and Sphenopalatine Ganglion Stimulation.

During a cluster bout many people find alcohol and strong smells can trigger an attack, it’s helpful to avoid these if you can.

Useful organisations

OUCH UK (Organisation for the Understanding of Cluster Headache)

Raise awareness of cluster headache and provide information and support to people affected by Cluster Headache.

Helpline: 0800 6696 824

Website: www.ouchuk.org