We are working hard to find a CURE. Learn about our research and join our fight by visiting www.facingfacialpain.org

I have had TN for 22 years. Some days the pain is so bad I couldn't come from my room. I started out with 1-100mg of carbamazepin over the years I went to 6 - 200 mg per day + 3-50 my Lyrica. My neurologist told me about a Dr in Nashville, Tennessee who could do surgery (mvd). I had surgery in March and my pain is gone. Thanks to Dr Robert Mericle. I have my life back without the medications. Prayers for your recovery.

I'm nineteen and I have TN for 2 years. Sometimes it's hard but sometimes I'm ok. Send hug to everyone with this disease!

It's hard enough being your 60s, I cannot imagine being young in the working life having to deal with it. It really sucks because the medication is debilitating too.

Atypical Trigeminal Neuralgia sufferer here. Doing things like arts and sports, things where you have to be completely present in the moment have been the only conscious pain free moments I've experienced in over 10 years. Sometimes those few sacred moments are worth the pain of most of the others.

Hi Billy, and other TN sufferers. I had TN for best part of 3 years. Did the rounds of dentists, doctors, ent specialists, neurologist, pain experts. Had lots of tests, X-rays and mri. Was on 900 mg of Lyrica daily which was like living in a fog. Then I found a dentist who specialised in facial pain here in Dublin, Ireland, who weaned me off the lyrica put me on verapamil. This is a calcium channel blocker generally used for high blood pressure. But for some reason it worked. Within a few months my TN was gone. In the past 12 years it’s come back twice for just a couple of days each time. So there is hope and I wish you all the best of luck finding a cure. I hope this helps someone.

I’m so so sorry 💔😢I’m only 4 months in and I already feel like it’s been 2 years. When you cried, I felt that!

I know it's been 2 years since this was posted. Nevertheless, hang in there brother. You're not alone. There's more of us out there. We may not be able to stand straight, but if we lean on each other, we won't fall.

Diagnosed with TN last 2019.. Pain is a part of my life together with fear, depression and anxiety.. Praying that someday a real cure already available... Salute to all TN. survivor..

I’m going through a flare up right now. I hate it. I’m crying just listening to your story. It’s basically exact to mine. I really know how you feel and what you’re going through

I'm a 25 year old man from Amsterdam. My TN started three years ago when I was 22. I would say it's a devilish, maddening hidden disease. It drives you mad and beyond that. My best wishes and prayers for Billy and all the brave fighters suffering from TN.

I had TN for 3 yrs in episodes. Ultimately I was diagnosed with ms from the look into my brain from the TN. Most with MS aren’t helped by the Surgeries for TN. But my pain was the classic shocks. In 2006 I had brain surgery to lift an offending vessel off that nerve branch. It worked. Pain free for ‘14 years! Thank you for sharing your positive story

I want to cry with him but i cant even crying triggers my pain...... i think we hv to live with this.

Hi, Billy, my son was just diagnosed 2 days ago. He is 15, started having pain at 13. He has mentioned it hurting so much that he wishes he would die so the pain can go away. He says this while in pain but I know that it's the pain speaking because when he's not in pain he has said that dying scares him. He's not in constant pain but it is building up and is being triggered more often. I spend hours cuddling him because he needs the comfort. There's people in my family his father included that do not not fully understand the pain he deals with. I'm here watching your video so I can share it with others. Thank you!!

Billy, my sweet brother, you courageous giant among people who will never know the true reality of life. You made smile and gave me courage because of your warrior attitude and I can't thank you enough. I will pray for you by name everyday inshallah and i also hope to buy your art oneday soon Long Live the King 👑

I feel for anyone that has, or had, this horrid disease. I had it on the right upper side of my face for almost 4 months. I thank god that it resolved by itself! But during those months I wanted a way "out" and I became depressed to a level I have never felt before in my 51 years of living. I pray that I never experience something like that again. I cannot imagine those of you out there that have endured this for years on end. May you find strength and solace.

I thank god my surgeon was able to fix me. May you find peace brother 💕

I was first diagnosed with TN when my kids were in 1st grade and preschool. The challenge of trying to parent through the pain is something I can never fully explain to anyone else who hasn't experienced TN. I was lucky to have almost 8 years of pain free life after my MVD, but it came back. I was severely depressed about its failure, but a friend helped me reframe the situation where now I say that the MVD gifted me 8 years to raise my daughters. They are teenagers now and can understand much more at this point. It was painfully confusing when they were little, which only added to the heartbreak. It's so hard to see another young parent push through this.

Oh my heart. This young man just grapped me. I can't imagine. I'm 70, and have never heard of this before. ❤

Recently diagnosed with it, it’s the most horrific pain I have ever experienced. I’m on medication now and waiting for a hospital appointment. The pain is still there most days in my top jaw, but the medication helps. When it first happened I had to sit in the chair for 24 hours a day for over a week, the pain would come in waves and I felt so sick. I didn’t eat and only sipped water for my other medication or even go to the bathroom I was frozen with fear due to the pain. I could have easily taken my own life if I had the means. I have never felt pain like it and I suffered spinal cord damage 25 years ago and use a wheelchair chair. I just don’t need this as well.

OMG you are telling my story ! I had an episode last year and now experiencing it again . I’ve self diagnosed myself because these doctors/dentist around here never heard of it

Bravo Billy, I feel your Pain. Art Practice is King. It's My Salvation like a Guiding Light. Helps My Brain fight Back. I had All my teeth out Under the Illusion that I had Dental Infections Causing the Pain. Only AFTER, Did I learn about that troublesome Trigeminal Nerve Root As A Hidden Foe. At least you've got a Swell Family. THAT is So Important & All the Best. For me, Finland is Home. As the Cöld is My Friend & My Pain subsides.

I have the same problem for sometime now. The pain is unbearable when the trigger happens. Feels like everything stops. Even my enemies shouldn’t have it.

Hi. You are so inspiring. I came across your post because I’ve had TN for 5 years and am having a flare up just now. I can’t talk because my tongue hitting my teeth sets off the shocks. I can feel myself sliding into a depression because I’m having to increase my Gabapentin and it makes me sleepy and non functioning. It helps to know there are people out there that understand the agony because it’s not just pain. Wishing you and all others with TN the very best.

I personally fight with this at age 35. Very sharp pain in my lower right gumline, shots into my head and taking a shower feels like my heads on fire. This is 24/7 pain. My heart goes out to everyone who fights with this!

Look at your beautiful family. Don’t give up!!! Look up a dentist in Oregon. Beautiful smiles. He’s curing people. 🙏🙏

I've had TN for past 4 years. It started as like a niggle in my left temple and has built up to now where its the whole side of my face. It is the most excruciating pain I've ever known and have flare ups 2 to 3 times a day. It lasts about an hour at a time and nothing seems to help it. It makes me cry every time. I hate my son seeing my like this and feel so useless sometimes. I'm going to see someone at maxillofacial team this month and hope they can help me in any way I'd be grateful. To all you people suffering with this , I feel your pain. It's hard to explain it to people who've never had it. I hope everyone manages to get the help they need.

I take Gabapentin and it does help. A horrible condition that makes me depressed too. Stress doesn't help. I pray for anyone with this curse.

I was diagnosed with this condition in 2016 and Sometimes I couldn’t even lift my head up off of my pillow. I would just cry out to the Lord.. I go months without having any pain then boom 💥 one day the pain comes back and I get terrified to even move out the bed so I just lay there and worship the Lord

This poor man, my heart goes out for him

I take 800mg tegretol and 300mg Lyrica a day my pain level is a 6 out of a 10. But makes me too dizzy and unable to think right. Also there are days that I am totally disabled from the pain. I quit my Engineering job. This is the worst thing to happen to us. I am glad it gives you a break!

When you've suffered with trigeminal neuralgia, there isn't a pain in the world that can compare, in my experience you have to manage it and can never get rid of it completely

I feel for you so much. I've had TN for 6 years now. The pain just stops you dead in your tracks and literally takes your breath away! Vitamin therapy is helping. It can go into remission, as I have experienced that.

My prayers an a hug for anyone going through this

Get the operation Billy, i did and ive been pain free for 32 years.

I’m so sorry for your pain. I know how you feel. I had no idea how many people are affected by this pain.

Hi Billy, I hope this messages finds you well. My mother has suffered a great deal from TN. I recently discovered "Gamma Knife Surgery" to treat TN and the results have been positive. There are two hospitals one in Pittsburg, PA and Penn Medicine in Philadelphia that perform these non-invasive surgery. My mother who is 87 is currently going through the process to have this procedure since the medicines no longer work for and cause serious side effects. You are much younger and think you would be a good candidate - please research it as I think you would be a good candidate. Stay strong .....I know this isn't easy.

I know this pain too well, I’m 34 years old, and I have had this for about five years now, I’ve also been diagnosed with multiple sclerosis when I was at the age of 16, and I was told by my neurologist that because I have such a crappy disease That is the reason why I have trigeminal neuralgia. If you have this, it is the worst thing that could ever happen to you in life, you can’t brush your teeth right you can’t chew when you’re eating right you can’t lay down and sleep right and talk, right you can’t even go for a walk and I suppose walk the right way because everything you do, any major movement you know you’re screwed. And I worked in the nursing field, and I loved helping, take care of others so much, and I wish I can go back to doing that, but I’ve learned the hard way of learning to take care of myself more than anyone else. I would like to say to describe, the pain is like taking a shock for electrical stimulation to a muscle put on your face at the highest level you could go, but that would probably be the closest thing I can describe it to because I’ve had that done to, and this pain is much worse, so I understand your pain I see why they gave you. Lyrica and I was put on Lyrica at one point in time and gabapentin but I will say the one medication that really helps is carbamazepine as needed and daily I take oxcarbazepine 200 mg two tablets twice daily, that is my lifesaver. I probably wouldn’t be here if it weren’t because of medicine that helps make the pain subside.

Im 16 and I have this since when I was in the 8th grade and I still have it and it hurts so bad when it fires to my eyes

I am so,so, sorry for the pain that you are going through. My daughter has a milder case of tn and has noticed through the years that when her blood pressure rises due to anxieties, stress, depression being upset and even hard work that raises her heart rate she has an episode that sometimes lands her in the hospital for a shot to ease the pain. She somewhat has it under control by avoiding food and beverages that elevates her pressure and she takes a prescribed medication to help with panic attacks and anxieties. I hope that this information helps you out.

I have tn type 2. Started with type 1but now have type 2. Even eating can set mine of. I understand people's pain. I wish no 1 had to suffer. I'm blessed to have a supportive partner an family

I understand what you are going through. I was diagnosed in 2018. Very painful disease as changed my life.

I’ve had this on both sides of my face since 11. I don’t wish this on my worst enemy.

Having been diagnosed a year or so ago, it was debilitating, and then it stopped, but recently, I've been noticing minor flares, and this has me worried it's going to come back like it was. Crazy how long I went with no pain. I almost forgot about it until the other day when I noticed small shock like pain in my jaw when I whistled at work. And now it's when I chew or talk, and it's a little more painful.

Hi Billy, I'm rooting for you over here in Scotland. I have TN and understand what you're going through. Never give in to it. You're doing a great job and your family is beautiful. Best wishes.

I'm currently looking up stories like this because my boyfriend is experiencing this disease on a daily basis. It's so hard to see him in pain and not know what can help him. I can see that it affects his quality of life.

God bless you Billy and may God allow all of our ears to be sensitive to his voice. I pray for Trigeminal Neuralgia relief for everyone daily. Billy, I want to reach out to you, how can I connect with you?

it's 2023 and i recently got diagnosed with TN. It's debilitating, it's so much more painful than people can imagine. Every single time i eat it triggers. Hang in there buddy, you're not alone. There are a lot of us suffering out there with you

Im sorry to everyone that has to experience this. I was diagnosed 3 years ago. It would be miserable then go away. They say it comes back and comes back worse. They are correct. It been about a month of constant flare ups. I've barely left the house. Meds aren't working. Finally got some relief today, maybe it is coming to an end......for now.

Hi billy I started with TN about 8 years ago it is such a crashing pain take multiple medication but the pain keeps coming stronger and stronger I know what your going through just wish there was a cure wish you and your family all the best your a great dad Kath uk

If I don't take my gabepenttin on time I can't function. Trying to work with special needs kids at a high school, and deal with life is exhausting. I'm also steroid dependent for adrenal failure. It's so painful. I'm sorry for anyone going through this 😔

I have had TN now for almost 2 yrs. I had a traumatic fall and cracked the right side of my face when I fell on my cheek bone. It was a few months before I was able to find out what specialist I needed to see. My FP at the time was no help at all ( who I do not see anymore), I have had 3 nerve blocks which have helped very little. My new FP ask if I would consider Acupuncture, which I'm on my 3rd treatment, so far nothing. I know they say there is no cure, but they are working on it. I come to the realization I'm going to have this pain the rest on my life. The medication is terrible. And I would like to have a normal life again to be able to find/have a relationship again. I don' see that ever happening . It's so sad. Those who have TN I'm so sorry, I know what you're going through.

Hi Billy, Liam here from Ireland, I had root canal treatment 2 years ago and have developed TN as a result of root canal treatment. Like you I was between Dr and dentist for 2 years. I understand how you feel , big hug from Ireland. From your video I see your a great guy and a super Dad, we could be great pals. I think, I just want to be happy too,☘️

I can understand where this man is coming from. Specialists were not sure if I had TN or TMJ at first, but they've finally settled on TN. The last time I saw one, he anaesthetised the nerve and the little electric shocks going up the side of my face stopped. It started off as what I thought was toothache, but the dentist couldn't find any problem and would not extract any. She was as mystified as I was! I saw a neurologist who thought it wasn't TN. It was obvious to me that my condition wasn't TMJ because ordinary painkillers didn't work at all. I was prescribed Tegretol (carbamazapine) which took the pain away, but it made me feel so ill that I stopped taking it. I don't get any toothache anymore, but when I get an episode come on I just get pain when I eat. I try and avoid anything with salt, chilli etc. Sometimes once the pain has shot up my face to my head, it is not so bad after that and I can eat almost as normal. Maybe my pain is not as bad as what others experience, I don't know. It's a nasty condition to have though and my heart goes out to anybody who has it.

I was diagnosed 4 years ago. So painful and debilitating. I feel for all of you so much. I wish I knew where this comes from. I thought I beat it as I had no pain in the last nine months he but it came back in this past week. As you all know the electrical shocks in your face and jaw are excruciating. I just want you all to know it makes me feel better to tell my story and am always thinking of everyone who has it.

Nooo don't cry we here for you

Thanks for your video. I know what you're going through. How's TN now for you? Blessings to you.

I am 74 was diagnose with this several weeks. The pain is indeed so intense and horrific. Last week (out of pure despicartion) I had a small jar of Vicks Vapo Rub and would smell it when I experienced stuffiness in my nose. The pain came roaring in like a tidal wave so I rubbed some on my temple ..down the side of my face -jaw line and also rubbed some on my gums. it was instant pain relief ! I know it sounds silly but it works-at least on me. Camphor, mental and eucalyptus are the ingredients in the Vicks Vapo Rub and one of these ingredients -if not all of them seem to calm the nerve down. Please give it a try and see if it works for you.

BILLY, there is hope because mine actually went away. It got so bad I couldn't use a computer cos the electric waves were affecting me. I've just said a prayer for you. May you get well.

I’m glad I’m not alone in this fight

i am winning this horrible battle after a dentist pull out molar and produced me having a Trigeminal Neuralgia pain 2 years ago. i ve been massage therapist for 15 yerars.. i do chiropractic work too..... as soon as got this horrible pain i started studying PHYSIOLOGY and cranial and cervical desfuntion .... MANIPULATION on this subject from INDIA JAPAN MALAYSIA PHILIPINESS , CHINA.....those doctor are really awesome.. oriental are much better....applying the right stretching and manipulating the right tissues where the nerve # 5 , 7 runs you can get better... i live in fargo where do you live my friend thanks

😢 my prayers go out to you. Thank God that you have a significant other, because a person needs that uplifting. January. Im headed to Semmes Murphy Clinic in Germantown, Tennessee. Hoping for relief. It makes me cry so so bad.

I suffer with TN got diagnosed 7 yrs ago comes and goes but come back xmas gone and never left me i no how you feel worst pain ever waiting for scan and surgery no meds are fully helping i cant work it takes over your life

What a strong man i have been going through this alone for 2 years no help at all doctors laugh at me it really is terrible

My father has had diagnosed TN for 8 years now, I’ve watched him go from a strong butch carpenter to a debilitated bed ridden vegetable. He has been prescribed every medication under the sun and has had many of the surgeries to help to which none have worked. My dad is 65 now and has the mobility of an 85 year old. I feel sorry for anyone with this condition, especially anyone younger than my father. I hope one day they find a cure or a preventative for this. I’m not too sure whether there are genetical links to the condition but I am slightly worried about the risks of me also having this condition later on in life.

I’ve had it 3 years in March, I was on Tegrotol from the start which helped a bit I am now on Lamotregine 250 mg twice a day and haven’t had any pain for a couple of weeks, I hope you can get something for your pain soon, you have a lovely family who cares about you,

I suffer from this pain many years now. I take tegretol and gabapentin to ease the pain. It's terrible but God takes me through daily.

I have TN and I go see a neurosurgeon tomorrow possibly for MVD surgery and I’m scared to death. I hope you and all TN suffers are doing well❤

Vitamin C for neuralgia pain relief. Takes 8 weeks at least. A Study of Intravenous Administration of Vitamin C in the Treatment of Acute Herpetic Pain and Postherpetic Neuralgia, 2016

At 70 I now have trigeminal neuralgia after my cervical neck surgery. It's a combination pinched nerve and blood vessel at the c5 neck area. You can have surgery to relieve the pressure. Also different neck positions while sleeping make it worse and the muscles in your neck shoulders also effect the pain levels. Yes it is depressing to always have pain

Anyone that has this, knows how horrible it is. I highly recommend going to Dr Eric Berg's video on Trigeminal Neuralgia relief options. I hope this helps in some way for someone.

I feel this pain after got dentist cleaning than my headache was so crazy

I know how you feel, I have pain and ache every day, taking pain killer is routine. Don't be despair, maybe one day some miracle med will cure our problem. ❤❤🌞🌞

If i can become painfree I'm going back to school to help people with these painful conditions. I don't know if my TN is caused by my ON or Ernest syndrome, doctors really haven't been much help, I have a good massage therapist and physiotherapist and that helps more than any meds.

I understand I am there with TN and CSRP

You are a great Dad, man!

It’s awful to live with this! Six years of non stop hell. It’s overwhelming I’m so frustrated everyday

The pain is so big... I cant put it in to words... You cant even speak or breathe...

Love u bro only been a few months but ur my hero... This shut can be isolating at times

I have TN and GN it’s pain that no one should ever face. It’s the worst pain in the world I’d be on the floor rolling for days in pain no one understands it’s so painful death is welcome the torture is unbearable plus I have psoriatic arthritis.

you are not alone i know this pain

I'm 20 y.o and I had this for 6 years. It started since I was 14 and the pain is so severe and unbearable😞😞😞

People think they know pain They have no idea. TN is so very painful. You can’t explain it to anyone. I use to smile at everyone now when I don’t people have called me a cold hearted bitch. It effects every thing you do.

I’m so sorry for you. 7 yrs fighting it myself.

He got off lucky. The same thing happened to my dad, but he ended up having ALS. 5 years later, and he died.

My TN makes me want to jump off of a bridge it’s soooooo painful..hot compress is helpful but once you take the warm compress off it’s the same

How are you doing? I think i might have it too. Hope you and your beautiful family are okay. ❤🇬🇧

I had TN for 5 years and then it gradually faded away. Now my brother has developed TN and his is getting worse and worse.

May God Bless You My Brother😘😘

My heartache for him :( god bless soul

I’m so sorry for your pain. Unless someone has experienced it, they will never know. I understand. Could you have surgery?

Aka “Tic de la roux” it’s the pain that a gamma knife neurologist Dr Loeser explained if you try to treat it with narcotics the patient will stop breathing before they achieve pain control. The Gamma knife treatments worked in some patients, even most but not all cases.

I wish you well, friend. I was diagnosed at 24. I identify.

I have this and honestly it hurts like hell, 😥😥😥😥😥😥😥😥l have this pain every day,

I got this sh!t to and it drives me crazy, i was a self employed ice cream man 11 yrs happy working , i had some great plans for the future and now i have not worked for over 1 yr my whole life sucks , im gonna loose my truck my house my car and then my LIFE so sad and mad.

I'm in my mid 30's and my TN started about a year ago. I try to stay positive but my TN gets so bad to the point I want to end it all. All the medicines don't work for me and I'm in constant pain even when I'm working. I have a problem talking and doing things that I used to love. I don't know how long I can bear with this monster.

Im suffering the same thing, pain is too much bear and handle.

Oh billy am so sorry. I think I have it....the pain is just unbearable

I’m so happy to know I’m not alone it’s hard dealing with rn and life simple things are now worry

Thank you