Cluster headaches

Migrainous neuralgia, episodic cluster headache (ECH), chronic cluster headache (CCH)

What are cluster headaches?

Cluster headaches are very painful headaches on one side of the head, usually around the eye.

What causes cluster headaches?

Cluster headaches usually start suddenly and last between 15 minutes and 3 hours. They can occur 1 to 8 times a day, often at the same times each day.

Cluster headaches are rare, and their exact cause is unclear.

They have been linked to a part of the brain called the hypothalamus, and seem to be more likely among people who smoke.

Cluster headaches are also known to be triggered by alcohol and strong smells.

 

What are the symptoms of cluster headaches?

Symptoms of a cluster headache include:

  • Extreme pain on one side of the head, which can cause feelings of restlessness and agitation
  • A red and watering eye
  • A swollen or drooping eyelid
  • Sweating
  • A smaller pupil in one eye

Are you affected by Cluster headaches?

If you’re affected by cluster headaches, The Brain Charity can support you.

We are the only charity in the UK to be here for every one of the more than 600 different neurological conditions in existence. Individually, many are rare, but combined, they affect 1 in 6 people.

We provide practical help on all aspects of living with cluster headaches, emotional support such as counselling, phone befriending and group therapy and social activities to people with cluster headache from all over the UK from our centre in Liverpool.

Looking to talk to someone?

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Phone us

Contact The Brain Charity now

Our friendly Information & Advice Officers are here to help.

0151 298 2999

Looking to talk to someone?

  • Please tell us which neurological condition you are affected by and what you need support with.

Caring for someone affected by Cluster headaches

Cluster headaches are an invisible condition. It is important that the person affected feels supported and understood, especially while they are experiencing an attack. Make sure that you do not dismiss the pain they are feeling.

We support carers, friends and family too

Are you a carer for or relative of someone with cluster headaches? It’s just as important for you to look after your own physical and mental wellbeing too.

The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition, including cluster headaches, from anywhere in the UK.

We also run an additional carers advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.

You don’t need to be a formal or registered carer

We can help you even if you don’t view yourself as a formal carer or claim Carer’s Allowance. Find out some of the ways we support carers below.

Carer support from The Brain Charity in Liverpool Practical help

Support for carers

All The Brain Charity's services are free for carers and family members of people with neurological conditions too.
Get help
Welfare benefits suoort at The Brain Charity in Liverpool Practical help

Applying for welfare benefits

We can help you apply for benefits like PIP and Universal Credit.
Get help
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Other resources

The Brain Charity's library

The library at The Brain Charity has a range of resources on Cluster Headaches and on a wide range of disability-related issues

Visit our library to read the booklet A Guide to the Understanding of Cluster Headache by OUCH and What is Cluster Headache?, or search the catalogue online here.

Read The Brain Charity’s guide to cluster headaches and PIP online.

Support groups

OUCH UK

Online Forum for cluster headaches.

Support groups at The Brain Charity

Are you interested in setting up a cluster headaches support group, or do you already run one? Email activities@thebraincharity.org.uk to let us know.

Alternatively, you can check out our list of related support groups here.

Other charities

OUCH UK (charity raising awareness of cluster headaches and offering support and guidance to those affected)

Helpline: 01646 651979
Website: www.ouchuk.org

The Migraine Trust (UK research and support charity for people affected by migraines)

Phone: 020 7631 6970
Website: www.migrainetrust.org

Resources to support you

Headache diary

Keeping a headache journal is a good way for you and your care team to attempt to de-code and understand your condition. Many doctors recommend keeping a diary of your headaches and the details of your episodes such as medications you took, how long the headache lasted and the pain level. Other patients start to track their food, drink and activities to attempt to identify a trigger for their cluster headaches, a diary can help with this too.

 

Traditionally these were done on paper, but for ease we recommend Migraine Insight a free headache toolkit app that features a headache diary, trigger finder, and report generator to support you with better clinical visits. It is also personalisable so you can track factors unique to you.

 

You can learn more here.