Support
For families and carers
If someone you love has cluster headache, you are dealing with something that can be frightening, exhausting and very hard to understand from the outside. This page is for you.
What you are witnessing
Watching someone you care about in the middle of a cluster headache attack is distressing. The person may be restless, pacing, holding their head, or unable to talk comfortably. The pain can look overwhelming from the outside. Attacks are severe, but they do end, and effective treatment, when it is available, can shorten them.
Cluster headache is sometimes called the "suicide headache" because the pain and distress during an attack can be extreme. That nickname reflects how severe the attacks feel, not a prediction about anyone’s future. Once the condition is recognised and treatment is in place, many people manage cycles far better than they did while undiagnosed.
Understanding the burden, on them and on you, is one of the most useful things you can do.
What NOT to do during an attack
- Do not try to get them to lie down - this often makes the pain worse and they need to be able to move.
- Do not dim the lights unless they specifically ask - cluster headache is not like migraine; light is usually not the issue.
- Do not give paracetamol, ibuprofen or codeine - these will not work and may delay them getting what they actually need.
- Do not panic - the attack will end. It may not look like it will, but it will.
- Do not take it personally if they cannot speak - during a peak attack, verbal communication may be impossible.
What TO do during an attack
- Help them get to their oxygen if they have it - turn on the tank, help them get the mask on, set the flow rate to 12–15 litres per minute.
- Help them prepare a sumatriptan injection if they have it and need it - some patients cannot manage the autoinjector themselves during peak pain.
- Clear the space - if they are pacing, make sure there is room. If they need to pace, let them pace.
- Stay calm and stay present - even if they cannot acknowledge you, knowing someone is there matters.
- Know the attack page URL: clusterheadache.org.nz/support/in-pain-right-now/
Between attacks - the emotional reality
During an active cluster period, the person you love is living under constant threat. Even when they are not currently in an attack, they know another one is coming. Often within hours. The anticipatory anxiety of a cluster period can be as debilitating in its own way as the attacks themselves.
They may be exhausted, on edge, withdrawn, struggling to work and struggling to connect. This is normal. It is not about you - it is about what they are managing.
How to actually help
- Learn the basics of the condition - reading this website is a good start.
- Help them manage their treatment - remind them about their verapamil, help keep track of the oxygen supply, know where the sumatriptan is kept.
- Advocate at medical appointments if they need it - cluster headache patients sometimes have difficulty articulating the severity of their condition to doctors. You can help.
- Give them permission to cancel plans without guilt - during a cluster period, they may need to. This is not laziness or weakness.
- Look after yourself too - caring for someone with a severe chronic condition is hard. Your wellbeing matters as well.
When to call an ambulance
Cluster headache attacks are not medically dangerous in themselves - they feel like an emergency but they are not. However, call 111 if:
- This is the worst headache they have ever had and it came on suddenly ("thunderclap") - this could be a subarachnoid haemorrhage, which is a medical emergency.
- There are new neurological symptoms: weakness, speech problems, confusion, vision changes.
- They are unconscious or cannot be roused.
- They have expressed an intention to harm themselves.
The impact on family members and carers is real and often overlooked. If you are struggling with the toll this condition is taking on your own wellbeing or your relationship, please reach out. Your GP can help, or you can call 1737 (free, 24/7) to talk to someone. You can also contact us directly.