Trigeminial Neuralgia and benefits — Scope | Disability forum
Find out how to let us know if you're concerned about another member's safety.

Trigeminial Neuralgia and benefits

glyn Member Posts: 3 Listener
edited July 2018 in PIP, DLA, and AA
Hi this is my 1st post ! 
I've had Trigeminial Neuralgia (TN) for 15years. It's also known as The suicide disease because of the severe facial pain. I've had operation on nerve which was brain surgery which didn't work. Then Gamma Knife which worked. I take gabapentin.. 
This painful condition isn't on the list at DWP ! I need to know how to claim for disability.
Thanks for reading Glyn x


  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    edited July 2018
    Hi @glyn and a warm welcome to the community! Thank you for taking the time to talk to us about this today. I am glad you found that some of the treatment works. If it is PIP that you are looking to apply for then it doesn't matter that it is not on the DWP website. PIP is a disability benefit that is based on the impact your impairment has on your life, rather than a condition you have. It is possible to not have a diagnosis and gain PIP. If you believe you may be entitled to this then you can use the PIP self- test online which may give you an indication of the award you would be given. However, please be aware that these are not guaranteed results as assessors may to score you the same. Also, it may be worth looking at the benefits calculator on the Scope website as this can tell you what else you may be able to claim. If you need anything else then please do not hesitate to be in touch :)

  • glyn
    glyn Member Posts: 3 Listener
    Thank you for quick reply. I will try the calculators to see if I can claim benefit. 
    I don't only have TN I have other health conditions.
  • poppy123456
    poppy123456 Member Posts: 28,416 Disability Gamechanger
    Do you currently work? Do you live with a partner that works? Claiming any means tested benefits will totally depend on household income.

    PIP isn't means tested. Do try the PIP self test in the link above. If you do start a claim for PIP then evidence will be needed to support a claim, they rarely contact anyone for evidence.
  • dipper1956
    dipper1956 Member Posts: 1 Listener
    please note it is not what you have.. but how it affects you. if going down the pip route plse take advice and support in the form completion

  • atlas46
    atlas46 Member Posts: 826 Pioneering
    Hi @glyn

    Welcome to the community.

    Could you explain what other health conditions you have.

    In particular if they impact on your daily living activities.

    This information will assist us, on how best we can support you.

    I note that there is a charity for TN in the UK, but you have to join to engage on it's forum.

    Look forward to assisting you, as much as possible.
  • Yadnad
    Yadnad Posts: 2,856 Connected
    glyn said:
    This painful condition isn't on the list at DWP ! I need to know how to claim for disability.
    Nether are many of my issues especially the side issues that the illness itself bring to the table. I even tried NHS choices and most aren't on there either.
    I 'proved' that they existed by referring to the GP records and the medication that was being prescribed.

    For PIP you have to show what the effects are because of the illness not what the illness is.
  • glyn
    glyn Member Posts: 3 Listener
    Hi sorry for late reply ! I have Trigeminial Neuralgia 
    Sinus problems
  • poppy123456
    poppy123456 Member Posts: 28,416 Disability Gamechanger
    Claiming PIP isn't about a diagnosis, it's how those conditions affect your ability to carry out daily activities against the PIP descriptors. See the links in Chloe's post above.
  • synergy2120
    synergy2120 Member Posts: 19 Courageous
    Hi Glyn, 

    My husband suffers from Chronic Cluster Headaches which effects the same nerve as your condition (also referred to as suicide headaches)..He managed to get awarded DLA quite a few years ago but has not yet been transferred to PIP. It is possible to get it but we did have to fight to get it, Have you ever tried Oxygen therapy? 


Complete our feedback form and tell us how we can make the community better.

Do you need advice on your energy costs?

Scope’s Disability Energy Support service is open to any disabled household in England or Wales in which one or more disabled people live. You can get free advice from an expert adviser on managing energy debt, switching tariffs, contacting your supplier and more. Find out more information by visiting our
Disability Energy Support webpage.