For Relatives · CKVÖ

You are supporting someone
with cluster headache.

It is not an easy role. The Cluster Kopfschmerzen Verein Österreich (Austrian Cluster Headache Association) offers you guidance, exchange with people in the same situation and practical support – so you can be there for someone without losing yourself.

The association is not a medical emergency or crisis service.

Meetings & exchange Ask a question

Practice · Practical help

What really helps

No guide can cover every situation. These basic principles have proven themselves in practice – discussed with patients and relatives.

1. Agree outside attacks what helps

Talk with the person affected during a calm, attack-free time about what support they want during an attack – and what they do not.
Agree together what should be prepared and what they prefer to handle alone.
Agree on a simple signal they can use to show whether they want company or space.

2. During an attack

Reduce questions and stimuli: dim the light, keep noise down, don’t expect conversation.
Give the person space – many people affected have to move and cannot lie still.
Keep the path clear and safe so they can move around unhindered.
Discreetly note when the attack starts and how long it lasts – this helps at later doctor visits.
Prepare only what has been prescribed and what you agreed on beforehand, for example having oxygen or acute medication ready.

3. What does not help

Touching or restraining the person without their consent.
Insisting that they lie still.
Repeated questions or well-meaning advice during the attack.
Discussing or arguing while the pain is present.
Offering or giving medication that has not been prescribed.
Changing equipment settings, such as on the oxygen supply, unless prescribed or agreed.

4. Accompanying doctor visits

Offer to keep the attack diary and contribute your observations on duration, frequency and course.
Let the person affected speak for themselves – you add to the conversation, you don’t take it over.
Help beforehand to gather questions and a compact timeline for the appointment.

5. You are not responsible for the attack

Relatives can neither prevent nor stop an attack. That is not your job – and it is not your fault when nothing helps immediately.

You are allowed to set limits, take breaks and seek support for yourself: through the association’s exchange or from professional services.

Exchange · Self-Help

Exchange within the association

Relatives are just as welcome in the CKVÖ as those affected themselves. The exchange is free and informal.

Understanding

Making sense of the condition

Cluster headache is one of the most intense forms of pain there is. If you understand why the person affected reacts the way they do during an attack, you can support them better – and protect yourself better too.

Online group

Exchange with people who understand

Relatives are welcome in the association’s moderated online group too. Share experiences, ask questions, learn from others – without geographical boundaries.

Self-help

Meetings in person

Our self-help meetings in Vienna and Graz are open to patients and relatives alike. Direct contact with people who know similar everyday situations.

Meetings & exchange

External Service · Psychosocial Counselling

When you need support yourself

Relatives reach their limits too. Professional psychosocial counselling is available outside the association:

External paid service provided by Stefan Kohlweg, MSc., chair of the Cluster Headache Association Austria and independent psychosocial counsellor. Not an association service, not medical treatment, not psychotherapy, and not a crisis service.

External paid service

Go to clusterberatung.at

The association is not a medical emergency or crisis service.

In immediate danger to life, call the ambulance on 144 or the European emergency number 112. In an acute psychological crisis, the Telefonseelsorge is available on 142 – around the clock, free and anonymous.

Going Deeper · Blog

Helpful articles for relatives

Practical articles for people supporting someone with cluster headache – from the first steps to looking after yourself.

Questions about supporting someone or about the association? verein@clusterkopfschmerzen.at or directly via our contact page.