Living With Facial Pain is an online patient support community that is powered by BensFriends.org, 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.
LivingWithFacialPain.org 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.
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
- Glossopharyngeal GPN Nerve block treatmentby Mexiboii95 on August 20, 2025
Hello, to my knowledge I think its considered typical GPN, I get zaps/shocks intermittent with sometimes small aches which was controlled pretty good for about 2+ years on amitriptyline. In my opinion, safest way to best way to go about this, would probably be to try 1st Nerve blocks, 2nd PRF Pulsed radiofrequency (NOT rhizotomy), and 3rd/ last option MVD. I do not want nerve cut as to minimize issues with it. But Would that be a safe and good way to go about it in order? Also, what has been […]
- Scalp Dermatological Irritations/Bumpiness After MVD/Craniotomyby Michael6 on July 28, 2025
Has anyone experienced scalp Dermatological irritations after micro-vascular decompression procedure? These bumps started showing up around two years after the Craniotomy. I have seen three different dermatologists and each one has given my a different diagnosis – one says it is due to herniation in cervical vertibrae, another says it is sebhorric dermatitis, and yet another dermatologist says it is from the Craniotomy due to the cutting through nerves in the skull for the microvascular […]
- Its…. Back 🙁by Swarls on July 24, 2025
The day i feared for almost 2 years has come. What started with incredible pain on my left side front tooth after a redone root canal on right side inscicor. And left me in constant pain for a full year. Tried gabapenting, amitryptiline, oxycodone and more with little result, the best part was the oxycodone that knocked me out in the beginning… i had all but given up, i was crying to my doctor like a little child and kept talking about suicide.. Then i started playing wow and eating […]
- Practitioners don’t know what to doby cathieebee on March 25, 2025
Hello, Long story short, I was involved in a car accident, which led to being diagnosed with trigeminal neuropathy after having spent 4,000 dollars in dental surgeries, sought out six dentists, two endodontists and one maxiofacial oral surgeons. I started on 10 mg of nortriptyline and began seeing an oral facial specialist (chiropracter). After i stopped seeing the chiropractor, i realized a lot of the pain was due to her touching my face. I am now on 50 mg of nortriptyline, and I’m feeling […]
- Volunteer Opportunity: Marketing Manager (Email + Social Media)by Ben_Munoz on March 11, 2025
Do you have experience with marketing and a knack for crafting engaging content? Ben’s Friends is seeking volunteers for two distinct Marketing Manager roles—one focused on email marketing and the other on social media. Both roles play a vital part in helping us communicate with our members and supporters. Key Responsibilities Email Marketing: Create and manage regular email newsletters, primarily using the email marketing platform Kit. Social Media: Develop and schedule content across […]
