Thank you for joining us for today’s webinar. You can receive information and resources in your inbox when you sign up for FPA's Bulletin at this link www.facepain.org/sign-up/
October is Facial Pain Awareness Month, an annual grassroots campaign to raise awareness about neuropathic facial pain. Throughout October, FPA will share facts about facial pain and lift the voices of our community by sharing stories and promoting awareness events. October 7: Trigeminal Neuralgia Awareness Day October 10: Geniculate Neuralgia Awareness Day October 14: Glossopharyngeal Neuralgia Awareness Day October 25: Occipital Neuralgia Awareness Day If you’re ready, share your story!
Although the video is not live, we encourage you to ask questions. Your participation will help us gauge interest in a variety of topics to better serve the community with future webinars.
Kayla Harley is a Chronic Facial Pain Warrior of 11 years, diagnosed with Chronic TMJ and Trigeminal Neuralgia in 2016. She represents and advocates for those living life with invisible conditions and incurable diseases, as well as serves in diverse communities at large as a Certified Holistic Wellness Practitioner, TEDx Speaker, Self-Published Author, Optimal Life Breathologist, GYROTONIC®/GYROKINESIS® Trainer and Full Spectrum Doula.
Welcome to the FPA’s Video Series featuring presentations from the 2024 FPA Conference. The topic for today’s webinar is Q&A With Kayla Harley, A Facial Pain Warrior.
But what about venous contact without compression like nerve did not show any signs of compression?? And is atypical TN(type 2) pain etiology or cause is different from neurovascular conflcit i.e in the case of typical or classical tn pain ?? Kindky ask these questions too
Thanks for being there, F.P.A. ! I've been suffering with TN off-and-on for 50 years. I'm not going to go into my experiences over all those years, but it is disturbing to see dentists on Y.T. offering their DTR procedures as effective treatment for the "Suicide Disease". I mean, making adjustments to a patient's bite force would hardly help this poor patient's TN symptoms: ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-YCGCT9XsVf4.html
TN treated with carbamazepine and developed an allergic reaction. I was switched to oxcarbazapine. I underwent MVD in April 2024. As I weaned off oxcarbazapine, I developed recurrence but not at same level as pre MVD. I stayed on oxcarbazapine but it caused sedation and it affected my ability to work so I was switched to Aptiom 200 mg q HS in November 2024 and did well with pain control. I developed severe pain again in in mid August this year requiring hospitalization for pain management and was switched to Aptiom 400 mg q HS, baclofen, Tylenol and compazine . I am currently on methadone due to severe pain as well but I feel like a zombie and have not been able to work. I am on Nurtec daily PRN, aimovig montly and Botox q 3 months for severe migraines. Most recent imaging revealed calcification “mass” near site of teflon wedge. I am currently pending MRI “FIESTA protocol” to determine if Teflon wedge moved, if there is another area where nerve is making contact with trigeminal nerve, or if there is a lesion related to MS. I have SLE and was previously worked up for MS which was negative. Pain is intense with what seems to be typical TN and I also have constant facial pain (atypical pain) in right temporal region as well supra orbital region, cheek, maxilla and ear pain. I also have right eye pain that has worsened more recently (V1,V2,V3). I’m not sure what will happen but at this point I am desperate for relief. I have been told treatment depends on pending imaging obviously but neurosurgeon spoke about repeat MVD, ablative procedures, balloon, or gamma knife. I was not offered nerve stimulation as an option.
MVD #1 in April 2021. Symptoms returned 4 months later but managed with oxcarbazapine. Switched to Aptiom in November 2023. TN returned much worse two weeks ago that is as painful as 1st epidose. I’m beside myself. No medication is helping at this point and I am desperate. I am an oncology NP and have not been able to work due to severe pain..
SP MVD #2. I was found to have a second contact vessel at nerve root entry causing the pain. Pain resolved immediately after surgery. I’ve never tried any other tx but medication and MVD. According to everything I have read, no other tx has the same effects of pain control as MVD. I opted for it again and although I am dealing with significant incisional pain, my TN is gone and that is a BIG plus for me. I feel like I have my life back although I know it can be temporary. I feel as if my original TN pain wasn’t investigated fully and I was only treated for one contact to TN. I will never know. I am just happy it was found and treated. I pray it is my last MVD as it is rough surgery to recover from especially when dealing with AI disorder such as SLE.
"What kind of medication did you take during pregnancy? I have TN (trigeminal neuralgia) and was pain-free for two years, but now, in my eighth month of pregnancy, the pain has returned. My doctor recommended gabapentin, 400 mg twice a day. I’m very worried about how this medication might affect my child. 😞
Thank you for joining us for tonight's webinar. You can receive information and resources in your inbox when you sign up for FPA's Bulletin in this link www.facepain.org/sign-up/
Although the video is not live, we encourage you to comment and ask questions. Your participation and feedback will help us gauge interest in a variety of topics to better serve the community with future webinars. The Facial Pain Association (FPA) does not endorse any product, doctor, procedure, medical institution, or its staff.
Welcome to the FPA's Video Series featuring presentations from the 2024 FPA Conference. The topic for today’s webinar is Advocacy 101: What is Advocacy and Why Does it Matter? presented by Julienne Verdi, JD, Executive Director of the Alliance for Headache Disorders Advocacy (AHDA).
I’m not phobic of needles except when one may be going into a very painful place. My issue with this type of therapy is that it would have to not touch my ears. I had to stop wearing earrings or putting on headphones in the 90s before I knew what was causing my right sided facial pain. Sometimes the entirety of my outer ear(s) just hurt for no reason so there are days I can’t wear earbuds either. My ears are that sensitive and painful at times. My ears are like that right now, actually. Any reason for such things as what I’ve explained? I’ve had to just ignore that pain bc nobody knows why. Sometimes it can be intense though…. And cold makes almost all my pain worse. Idk what to do… But for those who don’t have painful outer ears I really think this is an awesome idea and way to try to help their pain.
Thank you for joining us for tonight's webinar. You can receive information and resources in your inbox when you sign up for FPA's Bulletin in this link www.facepain.org/sign-up/
Although the video is not live, we encourage you to comment and ask questions. Your participation and feedback will help us gauge interest in a variety of topics to better serve the community with future webinars. The Facial Pain Association (FPA) does not endorse any product, doctor, procedure, medical institution, or its staff.
Welcome to the FPA's Video Series featuring presentations from the 2023 FPA Conference. The topic for today’s webinar is Auricular Acupuncture in Facial Pain presented by Gary L. Stanton, MD, Neurologist, Emerson Health. Dr. Stanton is a neurologist who has subspecialty interests and board certifications in sleep medicine, pain medicine, clinical neurophysiology, and medical acupuncture. He is also a member of the FPA’s Medical Advisory Board.
I just stay alone now locked away in my room. All my symptoms are back… so I don’t know what the heck to do. I really don’t want another brain surgery. But… this titanium plate over my left ear and temple hurts like bloody hell and I can’t do anything about it. Plus insurance keep denying my dental in my TN side so yeah I have no choice but to suffer. It’s a game out here. I think she’s the most awesome spokesperson for tn…. I love my foa but I just be too depressed to function cuz of discrimination I don’t wanna do anything no more except die so. Yeah. I’m tired!!
I just stay alone now locked away in my room. All my symptoms are back… so I don’t know what the heck to do. I really don’t want another brain surgery. But… this titanium plate over my left ear and temple hurts like bloody hell and I can’t do anything about it. Plus insurance keep denying my dental in my TN side so yeah I have no choice but to suffer. It’s a game out here.
Women hate me men see me as sex object… where’s my respect? But anyways.. it is what it used to be.. Sincerely your highness Saudia r Ferguson’s (Webb)like ALL BKACK WOMEN HATE ME. They call me psycho when I have my attacks and seizures. I must suffer alone in silence til I die…. That’s life here today. Social media only but in reality I’m treated like shit So what is unconditional love coz to me it’s abuse is love. My adopted family don’t care nor anyone. Just more accusations and lawsuits and I spreads can’t afford to live. So Los Angeles county is snatching my pussy and dollars like worse than a slave. Welp I’m broken now. I want comfort care with euthanasia as an option since I’m intolerant of most neuro psych drugs and bunch of other stuff too. Welp I’m not allowed a relationship. The men wanna wanna fuck. So… that’s the only solution to helping he in USA. So… dick and prayers my fb ebook blogs… Now I’m working on I CSNT WAIT TO DIE.. my new book.. coping with Trigeminal alone as an enemy in the USA trying to help provide safe healthcare practicing. Everything I do they turn into something demonic. So.. yeah I struggle with suicidal ideations DAILY.. nobody listens to me anyways. So listen Angeles county.. Mississippi Alabama how much does my pussy cost today cuz in the USA that’s all that matters us where my money at and what my pussy doing. Sorry so blunt but I’m straight up. Blacks say soerm in my mouth is all I need and women say to me shut up go pray I need Jesus. Ask for help! Ummmmm nah.
Women hate me men see me as sex object… where’s my respect? But anyways.. it is what it used to be.. Sincerely your highness Saudia r Ferguson’s (Webb)like ALL BKACK WOMEN HATE ME. They call me psycho when I have my attacks and seizures. I must suffer alone in silence til I die…. That’s life here today. Social media only but in reality I’m treated like shit So what is unconditional love coz to me it’s abuse is love. My adopted family don’t care nor anyone. Just more accusations and lawsuits and I spreads can’t afford to live. So Los Angeles county is snatching my pussy and dollars like worse than a slave. Welp I’m broken now. I want comfort care with euthanasia as an option since I’m intolerant of most neuro psych drugs and bunch of other stuff too. Welp I’m not allowed a relationship. The men wanna wanna fuck. So… that’s the only solution to helping he in USA. So… dick and prayers my fb ebook blogs… Now I’m working on I CSNT WAIT TO DIE.. my new book.. coping with Trigeminal alone as an enemy in the USA trying to help provide safe healthcare practicing. Everything I do they turn into something demonic. So.. yeah I struggle with suicidal ideations DAILY.. nobody listens to me anyways.
Women hate me men see me as sex object… where’s my respect? But anyways.. it is what it used to be.. Sincerely your highness Saudia r Ferguson’s (Webb)like ALL BKACK WOMEN HATE ME. They call me psycho when I have my attacks and seizures. I must suffer alone in silence til I die…. That’s life here today. Social media only but in reality I’m treated like shit So what is unconditional love coz to me it’s abuse is love.
Women hate me men see me as sex object… where’s my respect? But anyways.. it is what it used to be.. Sincerely your highness Saudia r Ferguson’s (Webb)
Teaching this is somehow a threat to humanity like social security deemed me as? That’s why I don’t care no more. I’m tired of USA government and citizens anyways.. But I gotta stay here against my will. Each day is a challenge to want to breathe. I’m tired of suffering abuse and discrimination. Like nobody give a damn bout us anyways. So I’m trying to teach myself I don’t need meds I’m fine if I SUDEP or stroke so be it. Ain’t nobody gonna be here to help me noways. Threats and scams lies is all I get. So yeah… thanks the hood for me losing my rn license. Nobody gonna help me noways secrets.
Men don’t respect me when I tell them I’m in pain. My no jeans their yes which has led me to daily SI coz I gotta fake happy to stay nice and don’t attack the men. Smile😊hiiiii Blacks and Latinos don worse me out mebtsllly emotionally financially..etc.. man I listen to everything reaching this in social media. And some how teaching this is drug seeking and too mental to work. So I still want to challenge BRN social security visiting angels Illuminati aka Nigeria stalking and hacking he forcing he straight just because of my disability. So tgeyvdmcsn take full advantage of my ideas without pay cuz I gotta pay but they want freebies. I can’t afford to live with TN. That’s why I say I’m better off dead. How else can the good fuck me up this week? Who will sacrifice me this weekend. They love to see me suffer. And I’m really ready to just die now coz I’m tired now. So….
My family has now been ripped apart. My career future goals aspirations family values.. all gone. Due to discrimination. By everybody in the USA pretty much!!!!! My sanity is gone too
My family has now been ripped apart. My career future goals aspirations family values.. all gone. Due to discrimination. By everybody in the USA pretty much!!!!!
During the live chat we received the question: What could be the connection between TN and Atrial Fibrillation? Here is Dr. Brown's answer: Both TN and atrial fibrillation (Afib) tend to occur in the aging population leading to a possible independent association. Sudden attacks of pain likely lead to a sympathetic outflow. Individuals with an established history of atrial fibrillation may be at risk of the arrythmia being triggered. I am not aware that patients with TN are at risk of atrial fibrillation as a concurrent illness. Afib occurs because of intrinsic abnormalities in the electrical conduction of the heart.
