Cluster headaches

Symptoms of a cluster headache

Cluster headaches begin quickly and without warning. The pain is very severe and is often described as a sharp, burning or piercing sensation on one side of the head. It's often felt around the eye, temple and sometimes face. It tends to occur on the same side for each attack.

People often feel restless and agitated during an attack because the pain is so intense, and they may react by rocking, pacing, or banging their head against the wall.

At least one of the following associated symptoms is usually present:

• a red and watering eye 
• drooping and swelling of one eyelid
• a smaller pupil in one eye
• a sweaty face
• a blocked or runny nostril

The attacks generally last between 15 minutes and three hours, and typically occur between one and eight times a day.

What causes cluster headaches?

The exact cause of cluster headaches isn't clear, but they've been linked to activity in part of the brain called the hypothalamus.

People who smoke seem to have a higher risk of getting cluster headaches. Some cases also appear to run in families, which suggests there may be a genetic link.

Cluster headache attacks can sometimes be triggered by drinking alcohol or by strong smells, such as perfume, paint or petrol.

Pattern of attacks

Cluster headaches usually occur every day, in bouts lasting several weeks or months at a time (typically 4-12 weeks), before they subside. 

Remission (a symptom-free period) will often follow, which sometimes lasts months or years before the headaches start again.

Cluster headaches often occur at the same time each day. For example, people often wake up with a headache within a couple of hours of going to sleep.

Bouts often occur every year for many years and may be lifelong. They tend to occur at similar times of the year, most often in the spring and autumn.

When to get medical advice

You should see your GP as soon as possible the first time you experience what you think may be a cluster headache.

They'll ask you about your symptoms and may refer you for tests. A brain scan is sometimes needed to exclude other conditions that can have similar symptoms to cluster headaches.

Typically, with cluster headaches, the brain scan is normal and the diagnosis is made on the basis of your symptoms without the need for further tests.

If you're diagnosed with cluster headaches, you'll usually see a specialist, such as a neurologist (a specialist in brain and nerve conditions), to talk about your treatment options.

Treatments for cluster headaches

Cluster headaches aren't life threatening, but they can cause severe pain and significantly affect your quality of life.

Over-the-counter painkillers, such as paracetamol, aren't effective for cluster headaches because they're too slow to take effect. Instead, you'll need to have one or more specialist treatments.

Three main treatments are available to relieve pain when taken soon after a cluster headache starts. These are:

• sumatriptan injections – which you can give yourself up to twice a day
• sumatriptan or zolmitriptan nasal spray – which can be used if you don't want to have injections
• oxygen therapy – where you breathe pure oxygen through a face mask

These treatments usually relieve the pain of a cluster headache within 15-30 minutes.

The Organisation for the Understanding of Cluster Headache (OUCH UK) has more information about the medications used to treat cluster headaches.

Transcutaneous vagus nerve stimulation

Transcutaneous vagus nerve stimulation (TVNS) is a new treatment that uses low-voltage electrical currents to stimulate a nerve in the neck. The aim is to relieve pain and reduce the number of cluster headaches.

You place a small handheld device (about the size of a mobile phone) on the side of your neck. Your specialist will show you exactly where.

Gradually increase the strength of the electrical current until you can feel small muscle contractions under your skin. Hold the device in position for about 90 seconds.

TVNS can be used to treat cluster headaches when they occur, and it can also be used between attacks to try to prevent them occurring. But it may not help everyone with cluster headaches.

For more information, read the National Institute for Health and Care Excellence (NICE) guidance about transcutaneous vagus nerve stimulation.

Stimulation device implantation

If you've had cluster headaches for a long time and other treatments haven't worked, surgery to implant a stimulation device may be recommended.

Under general anaesthetic, a small electrical device is implanted in a cavity in the side of your face. It emits electrical currents which stimulate an area of the parasympathetic nervous system thought to be associated with cluster headaches.

When you get a headache, you activate the device (up to a pre-determined maximum dose) by placing a handheld unit on your cheek over the place where the device is located.

As with TVNS, the aim of treatment is to relieve pain and reduce the frequency of cluster headache attacks.

NICE have recommended that the treatment is safe for short-term use (up to two months) under close specialist supervision.

For more information, read the NICE guidance about implantation of a sphenopalatine ganglion stimulation device for chronic cluster headache. 

Preventing cluster headaches

Avoiding triggers

Avoiding the triggers of cluster headaches can help prevent them.

For example, you should avoid drinking alcohol during a cluster headache bout. You should also try to avoid strong smelling chemicals, such as perfume, paint or petrol, which can often trigger an attack.

Becoming overheated during exercise can also bring on a cluster headache attack in some people, so it's best not to exercise during a bout.

Smoking has also been linked to an increased risk of getting cluster headaches, so you should consider giving up smoking.

Medication

Your doctor may also prescribe medication to prevent cluster headaches during a bout. You start taking the treatment as soon as the headaches begin, and continue it until the bout is thought to have stopped.

A medication called verapamil is the main treatment for preventing cluster headaches. It's taken as a tablet several times a day. Verapamil can cause heart problems in some people, so while taking it you'll need to be monitored using a test called an electrocardiogram (ECG).

Alternative treatments may be considered if verapamil isn't effective. These may include corticosteroids, lithium medication and occipital nerve blocks (local anaesthetic injections into the back of the head).

Preventative treatments can vary in effectiveness from person to person. You may need to try a few different treatments before your attacks are brought under control.

Help and support

Living with cluster headaches can be very difficult, particularly if you have long-term (chronic) cluster headaches.

You may find it useful to get further information, advice and support from organisations such as OUCH (UK).

OUCH (UK) have an answerphone messaging service you can call. The number is 01646 651979. You can also contact them by email: info@ouchuk.org.