Peer Mentors offer one-on-one support to others, like themselves, who are affected by facial pain. They are trained volunteers who can be empathetic listeners, share their experiences, connect you to resources, and share tips for coping with facial pain.
The goal is to provide support customized to your needs so you can connect with someone who knows what you’re going through. It’s up to you to make the first contact. However, once you reach out, volunteers will respond in a timely manner.
Three ways to connect with one-on-one support:
Common Ground: Occipital neuralgia, Gabapentin, Steroid Injection, Studied international affairs in Brussels, Belgium. Can talk to young patients.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Occipital neuralgia
Medication: Gabapentin, Steroid Injection
Location: Mid-Atlantic
Common Ground: Trigeminal neuralgia bilateral, Glossopharyngeal neuralgia, Geniculate neuralgia, Recurring pain after surgery Microvascular decompression, 4 surgeries, Dorsal Root Entry Zone (DREZ), Various complementary and alternative treatments, Founding member of Young Patients Committee (YPC), FPA Board of Directors, Can talk to young patients and their parents.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Geniculate neuralgia, Glossopharyngeal neuralgia, Trigeminal neuralgia (Typical/TN1) bilateral
Surgical Treatment: Dorsal Root Entry Zone (DREZ), Microvascular decompression - Repeat or Multiple Surgeries
Non-Surgical Treatment: Acupuncture, Cannabis Edibles, Chiropractic, Cold laser therapy, TENS unit, Upper cervical chiropractic
Location: Mid-Atlantic
Common Ground: Neuropathic tooth pain, Transcranial magnetic stimulation (TMS) therapy, Mouth guard, Can talk about compound medications including Klonipin and Gabapentin, 20 yr. breast cancer survivor
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Neuropathic tooth pain
Non-Surgical Treatment: Mouth guard, Transcranial magnetic stimulation (TMS) therapy
Medication: Baclofen, Compound medications, Gabapentin, Klonopin, Tegretol, Trileptal
Location: Midwest
Common Ground: Español/Spanish Los voluntarios de la FPA son personas como usted que viven con dolor facial
Email: [email protected]
Relationship to Facial Pain: Español/Spanish
Diagnosis: Temporomandibular joint disorder (TMJ), Trigeminal neuralgia (Typical/TN1)
Non-Surgical Treatment: Acupuncture, Mouth guard
Medication: Tegretol
Location: Southwest
Common Ground: Trigeminal neuralgia, Microvascular decompression, Tegretol, Trileptal, Gabapentin, Nortriptyline. Can talk about preparing for surgery and tips on recuperation.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuralgia (Typical/TN1)
Non-Surgical Treatment: Chiropractic, Upper cervical chiropractic
Medication: Gabapentin, Nortriptyline, Tegretol, Trileptal
Location: Mid-Atlantic
Common Ground: Trigeminal neuralgia bilateral, Microvascular decompression, Radiofrequency ablation. Can talk about searching for a diagnosis, benefits of medication for daily function, limitations of surgery outcomes.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuralgia (Typical/TN1) bilateral
Surgical Treatment: Radiofrequency ablation
Medication: Ketamine, Ketamine infusion, Ketamine infusions
Location: Mid-Atlantic
Common Ground: Persistent daily headache, Undiagnosed for eight years, Facial pressure, Facial tingling, Migraine, Brain fog, Fatigue, Can talk about diagnosis journey, experiences with Botox, gabapentin, muscle relaxers, acupuncture, chiropractic, cognitive-behavioral therapy techniques, living with facial pain as a young adult.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Migraine, Persistent Daily Headache
Surgical Treatment: Sinus surgery
Non-Surgical Treatment: Acupuncture, Botox, Chiropractic
Medication: Amitriptyline, Cymbalta, Gabapentin, Lamictal, Low Dose Naltrexone (LDN), Neurontin, Tizanidine, Tramadol, Trileptal, Vyepti
Location: Australia / New Zealand
Common Ground: Caregiver for partner with facial pain. Support Group Leader for Friends & Family. Can talk about caregiver concerns.
Email: [email protected]
Relationship to Facial Pain: Friend/Family/Caregiver
Location: Southeast
Common Ground: Painful Idiopathic Facial Pain (PIFP), Constant daily burning/ache on left side, Primarily in V2 branch, with pain radiating to temple and jaw, Can talk about managing pain with various medications, Atypical Trigeminal Neuralgia, Constant daily burning/ache on left side, Primarily in V2 branch but pain radiates to temple and jaw, Can talk about managing pain with various medications
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Painful Idiopathic Facial Pain (PIFP), Trigeminal neuralgia (Atypical/TN2)
Surgical Treatment: Gamma Knife
Medication: Amitriptyline, Baclofen, Carbamazepine, Cymbalta, Diclofenac Gel, Gabapentin, Hydrocodone, Lorazepam, Nortriptyline, Prednisone, Pregabalin, Tramadol
Location: New England
Common Ground: Trigeminal neuralgia, Microvascular decompression, Medications including Carbamazepine, Gabapentin, Professional comic. I want to help others because someone helped me.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Microvascular decompression
Non-Surgical Treatment: Osteopathy, Physical therapy / desensitization training, Trauma therapy
Medication: Carbamazepine, Gabapentin
Location: Southern California
Common Ground: Geniculate neuralgia, Trigeminal neuralgia, Microvascular decompression, Various medications. Can talk about the emotional consequences of living with facial pain.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Geniculate neuralgia, Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Microvascular decompression
Medication: Carbamazepine, Gabapentin, Oxcarbazepine
Location: Mid-Atlantic
Common Ground: Trigeminal neuralgia, Temporomandibular joint disorder (TMJ), Microvascular decompression, Gamma knife, 2 surgeries, Rhizotomy. Can talk about finding treatment in a rural area, wisdom tooth extraction, misdiagnosis of facial pain.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Temporomandibular joint disorder (TMJ), Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Gamma Knife, Rhizotomy
Location: Southwest
Common Ground: Trigeminal neuralgia, Occipital neuralgia, Eagles Syndrome, Chiari Malformation, Microvascular decompression, Peripheral nerve stimulator implant, Balloon compression rhizotomy, Styloidectomy, Can talk about personal surgery & recovery.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Chiari Malformation, Eagles Syndrome, Occipital neuralgia, Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Microvascular decompression, Microvascular decompression - Repeat or Multiple Surgeries, Peripheral nerve stimulator, Peripheral nerve stimulator implant, Rhizotomy, Styloidectomy
Location: Southeast
Common Ground: Peripheral traumatic trigeminal neuropathy, Can talk about finding hope and agency in painful times, Your experience in the healthcare system, Non-medical treatment options like physical therapy / desensitization, osteopathy, acupuncture, mental health approach, Selfcare and self compassion
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Peripheral traumatic trigeminal neuropathy
Non-Surgical Treatment: Craniosacral therapy, Physical therapy / desensitization training, Trauma therapy
Medication: Carbamazepine, Gabapentin, Tegretol
Location: Western Europe
Common Ground: Trigeminal neuropathic pain bilateral, Temporomandibular joint disorder (TMJ), First bite syndrome, Anesthesia dolorosa, Cluster migraine, Microvascular decompression, Motor cortex stimulator, Can talk about managing multiple diagnoses.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Anesthesia dolorosa, Migraine, Temporomandibular joint disorder (TMJ), Trigeminal neuralgia (Typical/TN1) bilateral
Surgical Treatment: Motor cortex stimulator
Location: Southeast
Common Ground: Typical facial pain, Atypical facial pain, Gamma Knife 2 surgeries, Radiofrequency rhizotomy. Can talk about typical and atypical facial pain, gamma knife radiosurgery, radiofrequency rhizotomy, upper cervical chiropractic. Professional counselor and life coach.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuralgia (Atypical/TN2), Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Gamma Knife, Rhizotomy
Non-Surgical Treatment: Chiropractic, TENS unit, Upper cervical chiropractic
Medication: Valtrex
Location: Mountain West
Common Ground: Trigeminal neuralgia, Glycerol Rhizotomy, Multiple nerve blocks, Aptiom, Gabapentin, Qulipta, Can talk about being in recovery and active in AA while living with facial pain.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Microvascular decompression - Repeat or Multiple Surgeries, Rhizotomy
Medication: Aptiom, Gabapentin, Qulipta
Location: Southwest
Common Ground: Trigeminal neuralgia type 1, Upper cervical chiropractic, Various medications including Tegretol, Gabapentin. Can talk about the benefit of support groups and relying on his Christian faith.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuralgia (Typical/TN1)
Non-Surgical Treatment: Chiropractic, Upper cervical chiropractic
Medication: Gabapentin, Tegretol
Location: Southern California
Common Ground: Trigeminal neuropathic pain, Postural orthostatic tachycardia syndrome (POTS), Peripheral nerve stimulator, Ketamine infusions
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Neuropathic facial pain, Postural orthostatic tachycardia syndrome (POTS), Trigeminal neuropathic pain
Surgical Treatment: Peripheral nerve stimulator
Medication: Ketamine, Ketamine infusion, Ketamine infusions
Location: Mid-Atlantic
Common Ground: Yoga, Meditation and being with friends and family seem to lessen the pain more than gabapentin ever did, I take no other medications and am looking for more holistic alternative treatments, Not a candidate for surgery
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuralgia (Atypical/TN2)
Non-Surgical Treatment: Yoga
Medication: Gabapentin
Location: Mid-Atlantic
Common Ground: Trigeminal neuralgia, Right jaw pain, Microvascular decompression, Gabapentin, Topiramate, Can talk about her healing team. Leads a weight class for seniors.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Microvascular decompression
Non-Surgical Treatment: Acupuncture, Mouth guard, Transcranial magnetic stimulation (TMS) therapy
Medication: Compound medications, Gabapentin, Klonopin, Topiramate
Location: New England
Common Ground: Trigeminal neuralgia V2 & V3, Microvascular decompression, Various medications, exercise, diet, biofeedback. Can talk about many treatments to aim relief. Eastern & Western medicine.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Microvascular decompression
Non-Surgical Treatment: Biofeedback, Diet, Nerve blocks
Medication: Baclofen, Carbamazepine, Gabapentin
Location: Southern California
Common Ground: Gamma knife, Microvascular decompression, Acupuncture, Chiropractic, Physical therapy, Botox, Can talk about being helped by a peer mentor and wants to pay it forward to help others.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuropathic pain
Surgical Treatment: Gamma Knife
Non-Surgical Treatment: Acupuncture, Chiropractic, Physical therapy / desensitization training
Medication: Baclofen, Carbamazepine, Gabapentin
Location: Pacific Northwest
Common Ground: Trigeminal neuralgia, Benign essential Blepharospasm, Botox, Can talk about declining Cyber Knife and not being a good candidate for microvascular decompression.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Benign essential Blepharospasm, Trigeminal neuralgia (Typical/TN1)
Non-Surgical Treatment: Botox, Vitamin B-12
Medication: Baclofen, Neurontin, Tegretol
Location: New England
Common Ground: Trigeminal neuralgia, Acupuncture, Neurontin, Tegretol, Trileptal. Can talk about depression associated with chronic pain facial pain. Retired teacher and school counselor.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuralgia (Typical/TN1)
Non-Surgical Treatment: Acupuncture
Medication: Neurontin, Tegretol, Trileptal
Location: Southeast
Common Ground: Trigeminal neuralgia, Occipital neuralgia, Microvascular decompression, Migraine, Can talk about repeat microvascular decompression surgery and recovery, Managing facial pain with a young child, Pregnancy and Trigeminal Neuralgia, Failed Microvascular decompression.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Migraine, Occipital neuralgia, Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Microvascular decompression, Microvascular decompression - Repeat or Multiple Surgeries
Location: Hawaii
Common Ground: Postherpetic Neuralgia (PNH), Severe pain in head and face, Redness and swelling in forehead, Severe fatigue, Heat intolerance, I want to be able to help others living with facial pain by being an empathetic support person. I would also like to be able to help point people to resources that may help them. Can talk about finding resources in a rural area.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Postherpetic neuralgia (PHN)
Non-Surgical Treatment: Acupuncture, Capsaicin cream, Cephaly device, Ice wrap, Lidocaine patches, Massage, Nerve blocks, Red light therapy
Medication: Amitriptyline, Cymbalta, Gabapentin, Ketamine, Ketamine infusion, Ketamine infusions, Lamictal, Low Dose Naltrexone (LDN), Neurontin, Nortriptyline, Tramadol, Trileptal, Vyepti
Location: Midwest
Common Ground: Atypical trigeminal neuralgia, Trigeminal neuralgia, Migraine, Microvascular decompression, Gamma Knife, Can talk about Botox, medical cannabis, physical therapy.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Migraine, Trigeminal neuralgia (Atypical/TN2), Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Gamma Knife
Non-Surgical Treatment: Botox, Physical therapy / desensitization training
Location: New England
Common Ground: Chronic facial neuropathy. Can talk about intentionally focusing on finding JOY in the everyday Middle Moments, mental health provider and want to use my professional and personal experience to help others.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Chronic facial neuropathy
Location: Southeast
Common Ground: Trigeminal neuralgia, Microvascular decompression, Can talk about experience with trigeminal neuralgia and surgery, support received from Peer Mentor and Groups. Widowed, retired Episcopal minister.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Microvascular decompression
Location: Mid-Atlantic
Common Ground: Neuropathic facial pain associated with 3rd branch of the trigeminal nerve, Microvascular decompression, Radiofrequency Rhizotomy 5 surgeries. Can talk about a variety of complimentary treatments including upper cervical chiropractic. Most interested in the psychology of living with facial pain.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Neuropathic facial pain
Surgical Treatment: Microvascular decompression, Rhizotomy
Non-Surgical Treatment: Chiropractic, Upper cervical chiropractic
Location: Canada
Common Ground: Trigeminal neuralgia (maxillary and mandibular branches), Microvascular decompression, Rhizotomy, Rhizotomy with heat ablation. Can talk about the impact on a young family, being misdiagnosed Family history of trigeminal neuralgia.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Microvascular decompression, Rhizotomy
Location: Mid-Atlantic
Common Ground: Trigeminal neuralgia, MAGO (Maxio Anterior Guided Orthotic), Microvascular decompression. Can talk about young patients, post-surgery pain, medication side effects, shocking pain in nerves C5,7,9. Young Patients Committee Co-Chair.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: MAGO (Maxio Anterior Guided Orthotic)
Non-Surgical Treatment: Acupuncture, Chiropractic
Location: Mid-Atlantic
Common Ground: Trigeminal neuropathic pain, bilateral pain in all three branches, Cold Laser Therapy, Various complimentary treatments, Can talk about Anxiety/depression, medications, support groups, navigating the healthcare system.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuropathic pain as a result of dental injury, Trigeminal neuropathic pain
Non-Surgical Treatment: Chiropractic, Cold laser therapy, Upper cervical chiropractic
Location: Mountain West
Common Ground: Trigeminal neuralgia, Bells Palsy, Radiofrequency ablation 2 surgeries, Facial chiropractic, Can talk about complementary treatments, reiki, hypnosis, talk therapy, living pain free after surgeries.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Radiofrequency ablation
Non-Surgical Treatment: Chiropractic, Physical therapy / desensitization training, Reiki therapy, Upper cervical chiropractic
Location: Midwest
Common Ground: Geniculate neuralgia, Geniculate neurectomy with MVD, Low Dose Naltrexone (LDN), Having been through the horrible journey of geniculate neuralgia pain for over five years before a diagnosis, I want to help others who have been in, or are currently in similar situations.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Geniculate neuralgia
Surgical Treatment: Geniculate neurectomy, Microvascular decompression
Medication: Low Dose Naltrexone (LDN)
Location: Midwest
Common Ground: Idiopathic trigeminal neuralgia type 1 & 2, Gamma Knife, Acupuncture, Red light Therapy, Upper clavicle stimulation, Various medications including Oxcarbazepine, Gabapentin Can talk about being misdiagnosed for five years. Founder of TN Warrior ATV racing.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Idiopathic trigeminal neuralgia
Surgical Treatment: Gamma Knife
Non-Surgical Treatment: Acupuncture, Red light therapy, Upper clavicle stimulation
Medication: Gabapentin, Oxcarbazepine
Location: Southwest
Common Ground: Trigeminal neuralgia, Atypical trigeminal neuralgia, Gamma knife, Microvascular decompression 2 surgeries, Glycerol Rhizotomy, Can talk about managing career and family stress, balancing nutrition and fitness training for overall health. Retired from 31 yr corporate career in internal audit and accounting.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuralgia (Atypical/TN2), Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Gamma Knife, Microvascular decompression, Microvascular decompression - Repeat or Multiple Surgeries, Rhizotomy
Non-Surgical Treatment: Nerve blocks
Location: Mid-Atlantic
Common Ground: Español/Spanish Los voluntarios de la FPA son personas como usted que viven con dolor facial
Email: [email protected]
Relationship to Facial Pain: Español/Spanish
Diagnosis: Trigeminal neuralgia (Atypical/TN2) bilateral
Surgical Treatment: Microvascular decompression, Microvascular decompression - Repeat or Multiple Surgeries
Medication: Topiramate, Vyepti
Location: Mid-Atlantic
Common Ground: Trigeminal neuralgia, Gamma Knife, Microvascular decompression, Botox, Ongoing medication management, Various medications. Can talk about receiving a facial pain diagnosis, advocating for yourself, how to explain facial pain to your children.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Gamma Knife, Microvascular decompression, Microvascular decompression - Repeat or Multiple Surgeries
Non-Surgical Treatment: Acupuncture, Botox, Cannabidiol (CBD oil), Chiropractic, Yoga
Location: Mountain West
Common Ground: Español/Spanish Los voluntarios de la FPA son personas como usted que viven con dolor facial
Email: [email protected]
Relationship to Facial Pain: Español/Spanish
Diagnosis: Migraine, Trigeminal neuropathic pain
Non-Surgical Treatment: Acupuncture, Cannabis Edibles, Cephaly device
Medication: Baclofen
Location: Southern California
Common Ground: Multiple sclerosis, Trigeminal neuralgia, Multiple rhizotomies, Gamma knife, Various medication including Tegretol, Gabapentin, Carbamazepine. Can talk about suffering from facial pain for 25 years.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Multiple sclerosis, Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Gamma Knife, Rhizotomy
Non-Surgical Treatment: Botox
Medication: Carbamazepine, Gabapentin, Tegretol
Location: New England
Common Ground: Trigeminal neuralgia, Anesthesia dolorosa, Microvascular decompression, Peripheral nerve stimulation, Kenalog injections. Can talk about the challenges of living with anesthesia dolorosa.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Anesthesia dolorosa, Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Peripheral nerve stimulator
Medication: Gabapentin, Kenalog injections, Ketamine, Ketamine infusion, Ketamine infusions
Location: New England
Common Ground: Trigeminal neuralgia, Microvascular decompression, Can talk about living pain free after successful MVD surgery, finding a diagnosis, working with dental professionals to raise awareness.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Microvascular decompression
Location: Midwest
Common Ground: Trigeminal neuralgia, Microvascular decompression, Botox injections, Can talk about positive surgical outcome. Respiratory Therapist, Fire fighter and EMT.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Anesthesia dolorosa, Migraine, Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Microvascular decompression
Non-Surgical Treatment: Botox
Location: Midwest
Common Ground: Trigeminal neuralgia, Neuroplastic therapy, Holistic techniques, Movement, Sensory integration, Can talk about medication side effects, surgery recovery.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuralgia (Typical/TN1)
Location: Pacific Northwest
Common Ground: Español/Spanish Los voluntarios de la FPA son personas como usted que viven con dolor facial
Email: [email protected]
Relationship to Facial Pain: Español/Spanish
Diagnosis: Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Microvascular decompression
Non-Surgical Treatment: Acupuncture, Craniosacral therapy, Diet, Massage
Location: Mountain West
Common Ground: Atypical facial pain, bilateral, Migraine, Microvascular decompression, 2 surgeries, Chiropractic, Acupuncture, CBD oil, Yoga, Can talk about searching for a diagnosis, Microvascular decompression, Managing work and family responsibilities while living with chronic pain. Professional church organist, and music teacher.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Migraine, Trigeminal neuralgia (Atypical/TN2) bilateral
Surgical Treatment: Microvascular decompression, Microvascular decompression - Repeat or Multiple Surgeries
Non-Surgical Treatment: Acupuncture, Cannabidiol (CBD oil), Chiropractic, Yoga
Location: Southeast
Common Ground: Atypical facial pain, Various surgical treatments & medications. Can talk about working and raising a family while coping with facial pain for 30+ years.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuralgia (Atypical/TN2)
Non-Surgical Treatment: Botox, Electroconvulsive therapy (ECT), Nerve blocks
Medication: Gabapentin, Ketamine, Ketamine infusion, Ketamine infusions, Trileptal
Location: Mid-Atlantic
Common Ground: Trigeminal neuralgia, Microvascular decompression, Various medications, Can talk about ways to deal with the pain and working. Support Group Leader, Civil Engineer
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Microvascular decompression
Medication: Carbamazepine, Gabapentin
Location: Mid-Atlantic
Common Ground: Friend of someone living with facial pain due carcinoma of the tongue, B.D.S. MS in Orofacial Pain Oral Medicine, not a physician but plans to teach, Speaks multiple Indian languages including Hindi, Malayalam, Kannada, Sanskrit, Telugu.
Email: [email protected]
Relationship to Facial Pain: Friend/Family/Caregiver
Location: Southeast
Common Ground: Trigeminal neuropathic pain as a result of dental injury, Anesthesia dolorosa, CyberKnife, Radiofrequency ablation. Can talk about facial pain after dental injury, medications, neurosurgeons.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Anesthesia dolorosa, Trigeminal neuropathic pain as a result of dental injury, Trigeminal neuropathic pain
Surgical Treatment: CyberKnife, Radiofrequency ablation
Non-Surgical Treatment: Cannabidiol (CBD oil)
Location: Northern California
Common Ground: Trigeminal neuralgia type 1 right side mandibular, Microvascular decompression, Medications including Oxcarbazepine, Carbamazepine, Gabapentin. Can talk about coping skills, advocating for yourself, work strategies. Father of two adult daughters, active in church.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Gamma Knife, Microvascular decompression
Medication: Carbamazepine, Gabapentin, Ketamine, Ketamine infusion, Ketamine infusions, Oxcarbazepine
Location: Southern California
Common Ground: Trigeminal neuralgia (type 1 &2), Anesthesia dolorosa, Migraine, Microvascular decompression 2 surgeries, Craniotomy, Cyst removal, CBD and medical cannabis, Various medications. Can talk about long, delayed healing from surgery, living on a relatively low dose of medication and having success with it.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Anesthesia dolorosa, Migraine, Trigeminal neuralgia (Atypical/TN2), Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Craniotomy, Cyst removal, Microvascular decompression - Repeat or Multiple Surgeries
Non-Surgical Treatment: Cannabidiol (CBD oil)
Location: Midwest
Common Ground: Trigeminal neuralgia, Microvascular decompression, Living pain free since surgery in 2007. Retired health care executive.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Trigeminal neuralgia (Typical/TN1)
Surgical Treatment: Microvascular decompression
Non-Surgical Treatment: Chiropractic, Upper cervical chiropractic
Medication: Gabapentin, Tegretol
Location: Mid-Atlantic
Common Ground: Meningioma brain tumor pressing on trigeminal nerve, CyberKnife, Surgical removal of meningioma combined with microvascular decompression. Can talk about 3 E's of support: Experiences, Education, Encouragement. St. Louis Support Group Leader, Tumor Support Group Leader.
Email: [email protected]
Relationship to Facial Pain: Lives with facial pain
Diagnosis: Meningioma brain tumor pressing on trigeminal nerve
Surgical Treatment: CyberKnife, Microvascular decompression
Location: Midwest
