Finding support for facial pain? Connect with people like you.

A welcome banner for Living With Facial Pain community featuring a hopeful patient and caregiver

Living With Facial Pain is an online patient support community that is powered by, a network of patient support communities for rare diseases. Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

Chronic facial pain syndromes effect as much as 1% of the population. Two of the better known conditions are Trigeminal Neuralgia (TN) and Glossopharyngeal Neuralgia (GPN) even though they are among the rarest. Pain specialists have attempted to classify other Facial Pain Syndromes by a number of names including atypical facial pain, Type 2TN, Type 7TN, Atypical Trigeminal Neuralgia (ATN), Trigeminal Neuropathic Pain (TNP) and Atypical Facial Neuralgia (AFP). Recently the term Persistent Idiopathic Facial Pain (PIFP) has been used to describe facial pain that is continuous or lasts most of a day. There simply is no consensus, even among practitioners.

While this site continues to provide Support for TN and GPN, we have come to realize that many other facial pain patients attempt to deal with their disease within the GPN or TN communities. While there is much in common in dealing with the day to day challenges off Chronic facial pain, there is often frustration among the groups when it comes to treatments both drug, surgical and other interventions. For that reason, we have expanded our opportunities for continued Peer to Peer support to include other Chronic facial pain syndromes. We have chosen to lump them into the Persistent Idiopathic Facial Pain category, while maintaining both the TN and GPN categories. is a virtual peer-to-peer community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.

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How is Ben’s Friends Different from Social Media and Other Support Sites?

Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

We’re interested in you as a person, and in your struggles as a rare disease patient.  But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe.  Your information is never shared, and your activity never tracked by adware.

When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live.  That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together.. 

Ben’s Friends: Safe and Supportive. 
And anonymous to keep it that way.

Why create an account?

Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:

Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.

Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.  

Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.

Click here to create an account and join.

Latest Discussions

  • I am Diagnosed TN Little Brother – trigeminal neuropathy and TMJ
    by Alihope on March 15, 2024

    Hello, First time posting! I am a victim of Dentists yet again hitting a nerve and damaging it leaving us with lifelong pain and suffering. Dentists then wonder why they are hated. I am 32M, healthy before my infamous dental appointment last year. I was living the life I dreamed in Sunny Southern California. Till that day, my 2023 was just me trying to find a solution to my pain. My work, life and enjoyment suffered considerably. I always wonder what I could have achieved in 2023 if it was not […]

  • I am so drugged, but I will do what it takes
    by ShowMe_from_MO on January 30, 2024

    I have MS with the TN that sometimes comes with it. For the past 5 years or so 300mg Trileptal at bedtime has been all I have needed. Since Christmas time this year, I have had 4 attacks lasting longer than ever before, once nearly 2 hours, long enough to make me understand why it is called the suicide disease. Since the 26th of January I have been taking 300mg Trileptal (oxcarbazepine) every eight hours, and that is keeping the TN episodes away. I am groggy, I can’t walk without holding on […]

  • Please help, My pain must be dental right? Or is it really TN2/ATN
    by Paingoawayplease on January 21, 2024

    Long story short, i had three dental fillings done by an incompenent dentist. The fillings were extremely small. All three teeth started aching badly after. After 6 months i had all three teeth root canaled, desperate Two of them were necrotic/dead (root canal was needed!) and the third one was on its way out. The third one felt different then others – would sleep at night, dragging/pulling pain, pain escalated after root canal but has been settling down in the last year. This is 100% […]

  • Looking For Your Living With Facial Pain Stories!
    by ModSupport on January 10, 2024

    @trust_level_0 Dear Facial Pain Support Member, For over 10 years, the Ben’s Friends online rare patient communities, run & moderated by rare patients themselves, have been a source of support for many of us, living with rare diseases. But it’s not enough. We would like more people to know about this wonderful service. To that effect, we are planning a social media campaign that will highlight the benefits of the Ben’s Friends online communities. We would like this to come directly […]

  • Numbness after Balloon rhizotomy
    by mickchick1962 on December 28, 2023

    Had balloon rhizotomy 11/20/23. TN pain is relieved but numbness is severe. Can’t bite or chew. Eye feels constantly irritated (dry?) but is not red. Can I expect this numbness to improve? So glad pain is relieved but really want to eat. (TN due to MS demylination of trigeminal nerve) Anyone have this procedure? What has your experience been? 8 posts – 4 participants Read full topic