Cluster headaches and PIP

PIP is a benefit payable to individuals with long-term health conditions that are expected to affect them for at least 50% of the time for at least 12 months – 3 months prior to applying and 9 months ahead of application.

Your condition must affect your ability to undertake activities associated with daily living (preparing meals, bathing, communicating etc) and mobility (walking/planning and following journeys).

PIP is not a ‘live-on’ benefit – it is a supplement designed to cover the costs incurred as a result of having a disability/health condition.

Your main source of income should be either earned income from work/pensions, benefits (Job Seekers Allowance or Universal Credit/Employment Support Allowance), or a combination of the above.

You can work and claim PIP as it is not means-tested. It also is not affected by any savings or capital you might have.

Your eligibility to claim PIP is assessed via a points system which you can download/view on the Citizens Advice Bureau website.

The Brain Charity has written a detailed guide to cluster headaches and PIP, which you can download free here:

Cluster headaches and PIP – a guide from The Brain Charity

We also have information about cluster headaches in our A-Z of neurological conditions.

The PIP assessment process

You begin the process by calling the PIP claim line on 0800 917 2222.

Before you call, you’ll need:

  • Your contact details, for example telephone number
  • Your date of birth
  • Your National Insurance number – this is on letters about tax, pensions and benefits
  • Your bank or building society account number and sort code
  • Your doctor or health worker’s name, address and telephone number
  • Dates and addresses for any time you’ve spent abroad, in a care home or in hospital

Top tips for your PIP application

  • Make a ‘Headache Diary’. This is the best way to provide good quality insight into how much of your time is spent managing an attack or the effects of an attack. There is a sample you can copy from our guide.
  • If the form asks about your ability to do something and you are not able to do so without symptoms of your condition causing problems, do not say that you can. Just answer “No” and explain the reasons why you cannot do so reliably as required.
  • If you cannot reliably do something – for example, you sometimes shower alone but more often than not you are unable to do so due to how severe, unpredictable and debilitating your attacks are, then your answer should be “No”. Again, explain why – for example “No I cannot wash independently as I cannot do so repeatedly as often as required”.
  • Consider whether you would be safer if you had another person to help you with tasks. We meet a lot of people who manage elements of their care alone – for example, cooking and dressing – despite being relatively unsafe to do so. The PIP process is not about just looking at the care you get, it’s about the care you think you need and should get, to complete activities reliably as stated above. If you cook alone every day but feel that you are actually putting yourself in danger by doing so, make this clear in your answer and state the reasons why you would be unsafe.
  • Refer to your cluster headaches as ‘cluster attacks’ – this helps avoid confusion with migraine or other headache conditions.