Billy Shipp- A Trigeminal Neuralgia Story

[@FacialPainResearchFoundation]

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

[@tracymcgrath1192]

❤

[@racheldunbar1849]

I'm so fed up with this condition:(

[@jeffmesser796]

What about gamma knife surgery

[@suschannel2432]

Billy your story about suffering from TN had me weeping. You are fortunate you have a wonderfully supportive wife and family and 3 beautiful children. I do hope you have found some relief by now. I too suffer from it and have for some 10 yrs. Have just had a series of Botox injections into the affected areas. Seems promising… Have very recently learnt that possibly/probably TN is actually a Neck problem - an oversensitized Brain Stem caused by the C1/2 (top two vertebrae out of alignment. I live in NZ and found on the Net the Blair Technique, treatments given by specialized Chiropractors who only treat the Upper Cervical area of the Spine for TN and Migraines. I am to see one next week.

[@S6vayToad]

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.

[@debbietownsend6610]

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.

[@debbietownsend6610]

And also my blood pressure has drop tremendously.

[@angelaharris106]

So happy for you it’s the worst pain ever 🙏🏻

[@byronajpop8204]

So happy for you 🎉!! Could you send me the doctor’s information 🙏

[@deborawyckoff3509]

God bless. Try MVD atleast pain will go away as long as your body will let it. I've had it for 36 years had 3 MVDbut has come back in all different areas .Head, Eye,Nose . Still fighting and always will.4:37

[@jonniebyford7747]

SO glad for you. I had it and you and I know there's NOTHING worse. Hope you have a nice life.

[@MidnightMetalUniverseYT]

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!

[@jovanap6685]

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!

[@localbus9677]

How doctor found out that you have trigeminal neuralgia

[@alexmolina6948]

GOD BLESS YOU

[@TRUTHJESUS87]

Did u have a root canal?

[@gabrielbarrantes6946]

What caused it?

[@misternewoutlook5437]

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.

[@billyg5763]

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.

[@cianuiderring5361]

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

[@riskeerider]

You poor kid. I hate that this started when you were so young. I feel your pain. The "acid tears" are the worst. Especially when you can't stop them from falling. I hope one day you find relief and I pray one day this will never be a burden to anyone. I don't know where you are but here's a Virtual Hug all the same.

[@Sweaty_toes9]

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

[@CannonRanger1]

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.

[@nikkirose8199]

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!

[@ricktol5803]

The same for you Nikki, did you het informed about the real solution MVD when its a typical TN?

[@KO-lq1yo]

It's been 2 years for me

[@kalsoomafridi133]

Please try wet cupping and amytriptyline.

[@catlue7006]

Me too..

[@teresah6712]

@@KO-lq1yo Almost 2 for me

[@lynn7561]

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.

[@blessookezie8705]

Visit Doctor Ani John herbal home @.his KZbin channel he cured mine permanently within 12days with his natural herbal remedies🌿 I thank God I’m totally free Now, And All Thanks to Doctor Ani John for saving my life, I will keep recommending the Good work

[@iballslide7604]

Is mri normal or any blood vessel in contact with tn nerve

[@xXx-lfg]

That's because it lowered your blood pressure. Higher blood pressure increases throbbing on the blood vessel hitting the TN nerve. Other meds are anti-convulsant. So the vessels don't convulse! Pretty much the same deal! So happy for you

[@avaleonardava6139]

@lynn7561 Hi can you please give me the name of that specialist in Dublin

[@Bro.EliRevealsTruth]

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..

[@heatheryoder2120]

👑 dropped this

[@onedayatagirl]

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

[@alimayal]

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 👑

[@KoKoCola82]

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

[@Barbiesfloppypossum]

I am too, I haven’t been diagnosed but after googling my symptoms , and ruling out my teeth it has to be what’s wrong with me

[@RossIsFine]

❤❤❤❤

[@FacialPainResearchFoundation]

We know your pain, and we hope to one day end it www.facingfacialpain.org

[@lindawhitener373]

Me toooo 😢😢😢

[@dianar.2990]

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!!

[@ricktol5803]

The pain is horror able . But also for your son, you have to go to the real solution asap. So first let them check the other elements which is normally no issue but just for control which means tumor or MS and if he reacts on tregetol and when this is right they must go for the MVD. Succes!!!!

[@sabinecohen8369]

Please read my post on TN above

[@beverlyguerry5827]

I’ve had this for six weeks , still not diagnosed! I’m up at night, because I cannot sleep laying down, so I sit on the sofa wrapped w/a blanket. Crying from the pain. Prayers for all who have this🙏

[@BeatlesTranscriber]

Please check Caring Medical channel and their procedure called Prolotherapy for TN

[@mrtizer6672]

I promise you the pain is so severe you just lose hope I'm 41 and just cried wanted to end it to escape the pain🥺 God bless your son 🙏 I wish him a pain free happy future x

[@MarthaGarrett]

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

[@markfoster2530]

Marthagarrett I’m following your path and am scheduled for the same surgery next month. A bit nervous but I can’t continue with the way things have been going.

[@dandlthomas]

Would like to know more! What was the “offending vessel” off the nerve. What was the offending vessel”?

[@GailOwens]

​@@dandlthomas Probably the trigeminal nerve is cautorised.

[@dandlthomas]

@@markfoster2530Hope your surgery was a success! Am curious what vessel was operated on? What was the surgery called? Thank you in advance!

[@missmaraja8437]

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

[@FacialPainResearchFoundation]

Our hope is that one day you do not. Our research is making great strides. Visit www.facingfacialpain.org

[@Barbiesfloppypossum]

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

[@FacialPainResearchFoundation]

We are working hard to raise awareness and find a cure. Visit www.facingfacialpain.org

[@aquicktake]

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.

[@FacialPainResearchFoundation]

We're thankful you are pain free. Help us spread awareness about our research www.facingfacialpain.org

[@markfoster2530]

Hagakuru my pain was like yours., just went away. Then boom it came back then away again. Back again. Each time it would last longer

[@aquicktake]

@@markfoster2530 Feel for you brother. Not sure about this, but I have a sneaking suspicion that mine was related to a bacterial tooth infection that I think spread to my upper jaw/cheek and started to touch on that nerve. I hate dentists and have some cracked teeth, about 2 weeks before the TN resolved itself, I started taking strong antibiotics. Nobody can say if there was a connection - but a reoccurring infection is something you may consider. Wish you the best - and hang in there!

[@susankoch8356]

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.

[@mrdunbar6758]

try Horizant its time released gabby dont make (me) sleepy so it might help ... this TN stuff is wretched im on year 4 and its effing stupid how much pain we indure

[@ricktol5803]

I am sorry to read it Susan. Also for you did you go to a specialized neurosurgeon for the possibility of a MVD? Or do you have an a typical TN?

[@susankoch8356]

@@ricktol5803 I think they said A typical. MRI didn’t show any trapped nerves or anything. A couple of years ago I made them remove a hidden wisdom tooth because I was convinced it was that. It wasn’t. I also think I have TMJ as well just to make matters confusing!

[@sabinecohen8369]

Please read my post how I sent my TN into remission.

[@marthachavez1561]

That’s the reason I don’t take gaberpertain because it makes me so sleepy and not able to function during the day.

[@addie9783]

Keep fighting Young man. I'm fighting too. I'm 53. My pain intensified after The Transient Ischemic Attack 😢. I still teach 2 year olds. I know ; soon I will have to stop. Continued Prayers and Remember you are a Great Dad and Husband ❤️

[@peterdavies938]

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

[@katrinaholliday6291]

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.

[@FacialPainResearchFoundation]

We are so sorry to hear you're in such pain.Our mission is to one day give you your life back. www.facingfacialpain.org

[@abigailbarfoot3846]

I was diagnosed with bilateral TN in October last year but I’ve had TN years but have never know how to explain the pain dur to having Aspergers and not being believe about my pain in the past. I think my gets worse when stressed anxious ill or feeling down. It was terrible last December when I had covid. I think it what had my sore throats when there no evidence of infection and sinus issues as well. I also get numbness is my face neck and arms. I’m waiting for an mri my doctor and her colleagues have been amazing. They knew it was ten as soon as I told how the pain manifests itd self. The pain is constant their no no let up.

[@puddincakes1005]

I’ve only had TN for 3 weeks, and my neurologist practically diagnosed me already based on how my symptoms have been. I don’t see him until a couple months for the official exam and diagnosis, and I am devastated thinking about how this condition is going to affect my girls as it worsens. I have a 1st grader and a 6 month old baby. I wanted to breastfeed for a year for her, but if I need to take medication for this pain (which has been increasing already), I might not be able to wait that long for her to stop breastfeeding for the meds. Today I had a break from most of the pain, and have mostly had some numbness and tingling, but the surges of pain are quietly still there, so I’m assuming tomorrow could be another story. I am so afraid of my daughters seeing me cry in pain. My 1st grader already has bad anxiety and I don’t want to worry her more with this.

[@AutoKratzxF34R]

@@puddincakes1005how are you feeling now

[@puddincakes1005]

@@AutoKratzxF34R I am doing alright actually. I ended up breastfeeding my baby for 7mons and then started Gabapentin at 100mg 3x day, and gradually have needed to increase every couple of months, so now I’m at 300mg 3x day. When I have flares, it’s relatively mild compared to most TN sufferers, so I’m lucky. It’s still painful, and can limit me, but I’ve had 10/10 nerve pain after a C-section, and my facial pain is nowhere near that. I hope my trend of increasing pain flares and going up on meds doesn’t keep going though. I also found out I may have lupus, so it could be caused by that.

[@helenakyner2438]

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

[@yaraviera4444]

My prayers an a hug for anyone going through this

[@MyCreativeSkillz]

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.

[@margaretpeelen3968]

Hello i Also live in Holland And suffer from this horrible disease . Knuffeltje M xxx

[@technicalclipper7515]

@@margaretpeelen3968 how did it start whether ur first attack was intense pain or very little pricks

[@margaretpeelen3968]

@@technicalclipper7515 it was full on , stabbing intense pain . Thought I had middle ear infection

[@technicalclipper7515]

@@margaretpeelen3968 whether ur first attack was intense or it started like small pricks in 1 st day and full intense on upcoming days.

[@technicalclipper7515]

@@margaretpeelen3968 and how is your condition now, still experiencing pain?

[@wicked-witch-of-the-west]

This poor man, my heart goes out for him

[@budoneof15]

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

[@liamoconnor6513]

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,☘️

[@riskeerider]

19 years and counting. I waited unmedicated for 17 of those to finally be told it was TN. What your wife said, about sometimes it's just needing someone to listen or a hug or just acknowledgement that I AM fighting. I AM struggling. I AM surviving. That got me. Dentists aren't informed, doctors rarely listen, and because the world can't see my "broken" parts they refuse to acknowledge that the pain is real. TN will work so hard to rob you of everything you have, everything you are, and definitely everything you want life to be.

[@annkeogan923]

Hi, have you considered microvascular decompression surgery? My brother had it 1 month ago and he is feeling great.

[@crystalcamus3373]

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.

[@mariamitsios387]

I feel for your daughter i think i have this but its off and on with pulsating throbs in my jaw amd face make me want to pass out not as much the shock pains but at night they feel like being electrocuted in face and head but i do get adrenaline rushes that come out of no where and make it worse brings on the anxiety i am going to get adrenal glands checked because sometimes that can be causing the anxieties and blood pressure going up surges of cortisol i think messes with the nerves in the body as well i just want to rule out everything

[@nancybratek2461]

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.

[@barbaralynch3015]

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.

[@marcanepa9063]

I have never had remission as mine is constant 24/7. I'm glad you have a break from the pain.

[@barbaralynch3015]

@@marcanepa9063 - So sorry to hear that. If you can, please try Vitamin C, Vitamin D, B Vitamin supplement, and magnesium. It helped me tremendously!

[@hustlemami8732]

@@barbaralynch3015 thank you Barbara

[@barbaralynch3015]

@@hustlemami8732 You're welcome! I wish you at least a long, long remission from this horrible affliction!

[@teresah6712]

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.

[@JesseJames-vc2bm]

You are a great Dad, man!

[@rhodaedwards8145]

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

[@gildrop]

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

[@MichaelBone-hj7sr]

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.

[@andredegefa5765]

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!

[@carolinegillespie8781]

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.

[@ricktol5803]

Did you try the MVD or do you have the a typical TN?

[@jamesgrace8509]

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

[@iballslide7604]

When you had mvd??

[@vishwanathjesh2731]

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.

[@FacialPainResearchFoundation]

We know the pain well, and are working hard on a cure. Visit www.facingfacialpain.org

[@johnw1093]

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.

[@kathytrig9596]

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

[@helga8736]

Lass deinen Kiefer untersuchen ob da tote oder Entzündungen im Kieferknochen sind ! Lass dei Blut auf Rantes Mercaptan und Thioether testen ! Oft sieht man auf dem Röntgenbild nichts und trotzdem können da Entzündungen sein!

[@colormewellness3794]

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

[@jettagliturbo]

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?

[@nk02024]

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.

[@marieharkinson7861]

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

[@tarikhelo4269]

You got trigeminal after having occipital neuralgia surgery?

[@margariteolmos3457]

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.

[@StandUnited88]

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.

[@badgalruth]

😢 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.

[@FacialPainResearchFoundation]

We are so sorry to hear how you are suffering. We encourage you to learn more about our work www.facingfacialpain.org

[@alexisjesus-baby305]

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

[@sabinecohen8369]

Please read my post above yours

[@R3ubed]

I know exactly how you feel! This is what I did this morning!! "Jesus, Jesus, Jesus" I was in remission for a year and my pain just started back the day before Thanksgiving. Went to the doctor last week and they gave me carbamazepine 100mg that I'm supposed to take 2x day, I took it for a week and then stopped because I hate taking medicine, but I popped one this morning after having 2 episodes 😫. I wish this pain on NO ONE!

[@alexisjesus-baby305]

@@R3ubed I just said that yesterday to my Fiancé we were out eating then boom 💥 pain stir I my entire left side when I bit into the bread and he laid hands on my face and began to pray in the name of Jesus and God removed the pain instantly. I know the Lord is with us even in the mist of suffering and that it where my strength comes from... I’ve gotten so many teeth pulled thinking the pain came from cavities that I barely have any back teeth to chew on but God is a preserving God

[@Topcaat]

I wish I had periods of remission, its been 8 months and I never felt pain free

[@evansimmons354]

I’m glad I’m not alone in this fight

[@dannymapletoft8446]

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.

[@ellamae6360]

Hello. Any update?

[@teresah6712]

Amen ! although I no longer have the stabbing, shooting needle pain that goes through my face. I know how bad it hurts, it took my breath away and I could cry, but was afraid to b/c it would hurt worse. I pray everyday.

[@skwarz2422]

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

[@Fargosportsmassage]

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

[@chefconor94]

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.

[@charmainesmith5245]

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

[@iballslide7604]

Have you consider mvd surgery or it is too risky

[@tearsorrain3073]

Nooo don't cry we here for you

[@susanf7461]

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

[@robertvilikai6762]

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

[@jaygrams5046]

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.

[@bobbibacha]

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.

[@PlanetaryCitizen]

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.

[@FacialPainResearchFoundation]

We're so sorry that you're suffering. We're working hard to find a cure www.facingfacialpain.org

[@deborawyckoff3509]

I send u my prayers and hope some day they find a cure for us that suffer. I'm 69 and I've had TN for 26 years. The only advice I can tell u that I had a MVD and my pain left for four years but I stoll had a distant pain like feeling in my face and still a Wormy feelings in my head . I hope by now u have gotten some relief by now. Hang in there and pray that soon our prayers will be answered. Your wife is blessed with her love for you. Peace.

[@angelaharris106]

@@deborawyckoff3509s X

[@iDreenuhh]

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.

[@vanessas2363]

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

[@jannora]

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,

[@melissamiller6182]

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 😔

[@brucedowney]

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

[@Harrytaylor2732]

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.

[@markfoster2530]

Harry has your father looked into any of the surgeries out there? Gama knife or decomposition surgery..?

[@Harrytaylor2732]

@@markfoster2530 sorry for the delayed reply! So my father has undergone almost every available surgery we have here in the UK the most successful one being a type of sheath they put around the nerve, this lasted only 6 months, to which my dad made a massive improvement, only for the attacks to come back. He is currently in talks with his GP regarding a new type of surgery that has come available, I’m not too sure of the specifics but we are willing to give it a try.

[@supermomma8134]

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❤

[@88Leehom]

Don't be scared. I had tingling and burning pain on my face for a few months thinking I had ATJ; an MRI confirmed benign tumor. I had no pain during or after the surgery. MVD is way easier, you should be fine. Pain medication is really not a long term solution. Good luck!

[@supermomma8134]

@@88Leehom yes pain medicine didn’t help me much at all. I’m hoping they can do surgery and get it over with lol

[@lisas2538]

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

[@jonniebyford7747]

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.

[@Sandrapotter-t6f]

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

[@ShiverZZZ666]

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😞😞😞

[@vldRO]

How are you now , i have this aswell ..:

[@the_trading_edge01]

May God Bless You My Brother😘😘

[@shaneglover2404]

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

[@redhotteagle777harris4]

God is with you 🙏

[@racqueljohnson6702]

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

[@blessookezie8705]

Visit Doctor Ani John herbal home @.his KZbin channel he cured mine permanently within 12days with his natural herbal remedies🌿 I thank God I’m totally free Now, And All Thanks to Doctor Ani John for saving my life, I will keep recommending the Good work

[@brandonwitmer2000]

I think I might have this but I’m totally not sure. Whenever I yawn or stretch my jaw to far I get this really intense shooting pain that feels like I got electrocuted. It sometimes happens a few times a month.

[@LinkzWorship1]

you are not alone i know this pain

[@elizabethmunster9091]

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.

[@elaineburch5397]

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.

[@FacialPainResearchFoundation]

We understand and we see you. Learn more about our work at www.facingfacialpain.org

[@balancepoint71]

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

[@ricktol5803]

Did you try the MVD or do you have the a typical TN?

[@sabinecohen8369]

Please read my post above how I sent my TN into remission

[@balancepoint71]

@@ricktol5803 My TN is cervical spine related. Surgery in March greatly improved. It comes back around but I have good days and can sleep.

[@jennatalks3399]

I have bilateral, both types. I would like to tell my story with you.

[@soniakeiae4969]

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.

[@ArkansasBadBoy]

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.

[@sarah-janeyorkkiz388]

The medical sites all suggest that this condition is rare. From all of the comments here, it seems not.

[@magical8013]

I just recently started feeling this pain. It is so uncomfortable every time you touch your face and you can feel the heat, the tingling and the pins and needles. I go to the doctors on Thursday, they had me on nerve pain medication, it's just not going to work I need to get the surgery

[@HK-si4mr]

Did you got tingling all over the body

[@Questthecat]

Thank you

[@somneang87time29]

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

[@duai7090]

My heartache for him :( god bless soul

[@walkingblindly]

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

[@bmoy2812]

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. ❤❤🌞🌞

[@FacialPainResearchFoundation]

We are working on this very miracle! Learn more at www.facingfacialpain.org

[@yaraviera4444]

I'm 41 an i was diagnosed with occipital an trigeminal neuralgia it's bad I'm unable to go the gym unable to watch TV or do anything..i keep getting nerve block it helps

[@badgalruth]

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

[@FacialPainResearchFoundation]

We are so sorry you are in pain. We are working hard to find a cure www.facingfacialpain.org

[@helga8736]

​@@FacialPainResearchFoundationdas wäre schön ! Ich habe die Erfahrung gemacht das das von Kieferendzündungen kommen kann tote Zähne wurzelbehandelte Zähne! Wichtig ist die Werte Rantes Mercaptan und Thioether untersuchen zu lassen !

[@petepineda1954]

My wife has had this disease for almost 15 years, and was able to control the disease through changes in diet (eliminating foods for which she is food intolerant) and chiropractic treatment through upper cervical chiropractors (atlas orthogonal and NUCCA and one other type which is a little bit more traditional to fix her back.). Perhaps this info can help.

[@iballslide7604]

Is her mri normal?? Or any vascualr contact with trigeminal nerve shown??

[@MP-po6fj]

Go to 2.01 hearing this man saying TN is the suicide disease.. I hear ya buddy. Please live for your kids they all need you pal. I was assaulted and now have the peripheral nerve burning pain in my lower back lived alone before with my German shepherd.. Lost my big dog and life and alone. The kant will get karmic circle had to give my dog up man

[@Bee41736]

Has anyone been on tregatol for this ? I hope you always feel better..

[@alexmolina6948]

GOD BLESS YOU BROTHER