Overview
Persistent idiopathic facial pain (PIFP), formerly known as atypical facial pain, is a chronic pain condition that affects the face. The word 'idiopathic' means the exact cause is unknown. People with this condition experience ongoing facial pain that does not follow the typical pattern of known nerve disorders like trigeminal neuralgia. The pain is usually felt in one area of the face, often described as a deep, aching, burning, or throbbing sensation. It can last for hours or be constant throughout the day, and it may persist for months or even years. The pain typically does not match the area served by any single nerve, which makes it different from other facial pain conditions. It can affect the cheek, jaw, nose, forehead, or around the eyes. The pain may spread over time. There is usually no visible cause found on physical examination, imaging, or lab tests, which can be frustrating for patients. Treatment focuses on managing pain and improving quality of life. Medications commonly used include low-dose tricyclic antidepressants (such as amitriptyline), anticonvulsants (such as gabapentin or pregabalin), and sometimes serotonin-norepinephrine reuptake inhibitors (SNRIs like duloxetine). Cognitive behavioral therapy and other psychological approaches can also help patients cope with chronic pain. Some patients benefit from multidisciplinary pain management programs. While there is no cure, many people find meaningful relief with the right combination of treatments.
Also known as:
Key symptoms:
Constant or near-constant facial painDeep aching or burning sensation in the facePain that does not follow a specific nerve pathwayPain usually on one side of the faceThrobbing or dull facial discomfortPain in the cheek, jaw, or around the eyePain that may spread to other areas of the face over timeNo numbness or loss of sensation in the painful areaPain that is not triggered by touch or chewing (unlike trigeminal neuralgia)Difficulty sleeping due to painAnxiety or depression related to chronic painFatigue from dealing with ongoing pain
Clinical phenotype terms (11)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
9 eventsSiriraj Hospital — NA
Alenka Spindler-Vesel
Hebei Medical University Fourth Hospital — PHASE2
Fondazione I.R.C.C.S. Istituto Neurologico Carlo Besta — NA
ImCare Biotech
BeOne Medicines — PHASE1
Seoul National University Hospital
Mercator MedSystems, Inc. — PHASE2
Glycotest, Inc.
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Persistent idiopathic facial pain.
2 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Persistent idiopathic facial pain.
Community
No community posts yet. Be the first to share your experience with Persistent idiopathic facial pain.
Start the conversation →Latest news about Persistent idiopathic facial pain
Disease timeline:
New recruiting trial: Iparomlimab and Tuvonralimab Combined With Apatinib and Irinotecan Hydrochloride for the Treatment of Advanced Alpha-fetoprotein-producing Gastric Cancer (AFPGC)
A new clinical trial is recruiting patients for Persistent idiopathic facial pain
New recruiting trial: Biannual Screening for HCC Offered to Patients With Cirrhosis. Introducing Surveillance for Hepatocellular Carcinoma (HCC) in the Central Denmark Region Using Ultrasound and Alpha-Fetoprotein to Reduce HCC-Related Mortality in Patients With Compensated Non-Viral Cirrhosis
A new clinical trial is recruiting patients for Persistent idiopathic facial pain
New recruiting trial: National Liver Cancer Screening Trial
A new clinical trial is recruiting patients for Persistent idiopathic facial pain
New recruiting trial: Use of Blood Biomarkers for the Early Diagnosis of Hepatocellular Carcinoma (HCC)
A new clinical trial is recruiting patients for Persistent idiopathic facial pain
New recruiting trial: Safety and Efficacy of XELOX Combined With Sintilimab and Lenvatinib in Advanced AFP-positive Gastric Cancer Patients
A new clinical trial is recruiting patients for Persistent idiopathic facial pain
New recruiting trial: A Phase 1 Study of BGB-B2033, Alone or in Combination With Tislelizumab With or Without Bevacizumab, in Participants With Advanced or Metastatic Solid Tumors
A new clinical trial is recruiting patients for Persistent idiopathic facial pain
New recruiting trial: The Application of Serum DNA Methylation for Patients With HCC
A new clinical trial is recruiting patients for Persistent idiopathic facial pain
New recruiting trial: Perivenous Dexamethasone Therapy: Examining Reduction of Inflammation After Thrombus Removal to Yield Benefit in Acute Femoropopliteal DVT
A new clinical trial is recruiting patients for Persistent idiopathic facial pain
New recruiting trial: An Innovative Cognitive-Behavioral Treatment For Chronic Orofacial Pain
A new clinical trial is recruiting patients for Persistent idiopathic facial pain
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What tests do I need to rule out other causes of my facial pain?,Which medication would you recommend starting with, and what side effects should I watch for?,Would cognitive behavioral therapy or other psychological approaches help me?,Should I see a pain management specialist or a multidisciplinary pain team?,Are there any procedures or nerve blocks that might help my pain?,How long should I try a medication before we decide if it is working?,What can I do at home to help manage my pain on a daily basis?
Common questions about Persistent idiopathic facial pain
What is Persistent idiopathic facial pain?
Persistent idiopathic facial pain (PIFP), formerly known as atypical facial pain, is a chronic pain condition that affects the face. The word 'idiopathic' means the exact cause is unknown. People with this condition experience ongoing facial pain that does not follow the typical pattern of known nerve disorders like trigeminal neuralgia. The pain is usually felt in one area of the face, often described as a deep, aching, burning, or throbbing sensation. It can last for hours or be constant throughout the day, and it may persist for months or even years. The pain typically does not match the a
How is Persistent idiopathic facial pain inherited?
Persistent idiopathic facial pain follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Persistent idiopathic facial pain typically begin?
Typical onset of Persistent idiopathic facial pain is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Persistent idiopathic facial pain?
Yes — 2 recruiting clinical trials are currently listed for Persistent idiopathic facial pain on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Persistent idiopathic facial pain?
6 specialists and care centers treating Persistent idiopathic facial pain are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.