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I have trigeminal neuralgia I am 13 years old it made me have seizures n lose my walking abilities I am currently on my 4th month in the hospital and I have surgery this week please pray for me

As a doctor, the patients I've seen who suffer from this disease always stuck with me the most, and I find myself looking up videos about people who suffer from TN so that I can hopefully be able to recognize it whenever I see it, because it is very much true that it goes ignored and unnoticed by health care professionals all the time, for decades in some cases. It takes a lot of courage and mental fortitude to continue the fight against this disease, I pray and believe in you all.

I can tolerate the burning most of the time. But when the stabbing and electrical shocks start, I'm on my knees crying like a baby. I am thankful that mine comes and goes. I couldn't deal with this pain if it never went away. I'm lucky that I usually go for months without pain. My attacks usually only last two or three days, however every time it comes back the attacks lasts longer. I've been dealing with my most recent episode for a week and it's been the worst one yet. Praying for relief for all those suffering this horrible disease.

It makes me cry to know I’m not alone. I share your pain. I know your struggle. Have mercy on all of us. Bless you all.

My first attack was 2 days before my 18th birthday. I'm 32 now. I've tried: Many medications. MVD surgery. Botox. Acupuncture. Creams with hot peppers. Face patches. Cervical chiropractic care. Diet therapy. Vitamin therapy. Mirror therapy and meditation. Laser therapy. Marijuana. Good old fashioned alcohol. I am definitely forgetting a few things. We need a cure. Or at least a better link to remission. I'm really tired.

This is heartbreaking :( My heart goes out to anyone with this disease, please keep fighting.

Truly words cannot describe this pain. I have had chronic pain for years but nothing comes close to this. Mine is caused by a tumor but I've been told surgery is possibly too dangerous. People just don't understand something so simple as taking a sip of water can set it off. Then it goes away just as fast as it came. The comment in the video about the skull splitting open or an ice pick going into your brain is it good description. I've been in chronic pain for about 20 years. The TN started six years ago but would go away years at a time. Then last year it came back to stay. I had gamma knife and it went away for two months. Now back worse than ever with the added sypmtom of the fire inside that was described in the video. All of these years going through pain and painful procedures, i have never vocalized my suffering but with this, i scream, i fall to my knees, i punch my body during an attack. If there is a hell, this it. And to add insult, people think you are being overdramatic or faking or cant handle pain. Not having emotional support is so isolating. To anyone reading this, you are not alone, i believe you, and i am so sorry you are suffering. You do not deseve this.

Finally a place I feel seen and heard. I wouldn't wish this on anyone 💔

Words could never describe the pain I suffered.i would rather die than go through that again,Tegrotol kept the pain under control for quite a few years but then it stopped working,Surgery was the only answer,I had peace for the first time in years,the right side of my face is numb now,but I can put up with that. I'm forever grateful to that surgeon and his team for what they did for me.

Literally crying in pain and out of emotions while watching this. I had been suffering from TN since 2013, 😢

I literally just sobbed through this video. My TN started 5 years ago. It's the worst pain I've ever had. Worst than natural non medicated child birth. I hope they find a real treatment. Bless all of you.

While I don’t have trigeminal neuralgia , I know exactly how you feel. I too suffer from invisible disability, I am fully legally disabled, but if you look at me and didn’t know me you would assume I am perfectly healthy man, but you would be dead wrong. I won’t get into my issues too much, suffice it to say I’ve been in severe crippling agony for the past 28 years of my life. I am now 48, can’t work, and have 11 chronic and agonizing diseases that are completely destroyed my life in every aspect possible, yet people take one look and say you look terrific, or accuse me of faking all of it so I don’t have to go to work, I wish to God I could go to work, instead of facing this hell. I actually have never heard of this disease before, tonight is the first time I’m hearing about it, and I feel so so sorry for every single person that suffers from this. There’s nothing worse than having to deal with such a crippling illness, but then to have people accuse you of faking it makes it that much harder to live with. There have been many many days that I wanted to kill myself, including today, because you reach a point where the pain is the only thing you can think of. When you’re in crippling debilitating agony, and have people tell you that you’re faking it, just pushes your right over the edge, who wants to live like that? I’ve never attempted suicide yet, but I assure you that if I try I will succeed, because I in no way want to live like this anymore, and please don’t judge until you’ve been in our shoes. My heart goes out to all these people! It may sound crazy, but there are many many times I wish I had been amputated limb, a disability that people could actually see, so I wouldn’t have to face a barrage of stupid question, and ignorant looks. I beg all of you, have compassion for these people, because you have absolutely no idea of the hell they are forced to endure on a daily basis. All my hopes and compassion to you all, You’re not alone😰❤️😰

Torture is my description of Trigeminal Neuralgia' and jus a few days ago i discovered this terrible pain has a name, i've suffered 31yrs! It has another name as well, suicide pain and i pray we all hang in there and seek help + keep seeking.

Tears are falling down my face for the sufferers of TN, including a dear friend of mine who had decompression surgery yesterday. I pray she and other TN find relief for their pain.

I have atypical TN. Failed MVD and am worse than prior. All of you in this video are my heroes.

This brings tears to my eyes . I was diagnosed last may of 2022 , I had migraine for the longest time but it’s nothing compared to TN. I this is life changing, I hope they find a real cure.

I was diagnosed with Trigeminal Neuralgia in 2013. Things seemed to be going great,but 3 years later,it came back hard. I started missing lots of work because the pain was unbearable. I was put on 4 different meds until finally gabapentin took the edge off. Now,in 2019 I have been attacked every day with excruciating pain. Missing days of work,working in severe pain. I'm tired of being in constant pain and I'm ready to give in to surgery. My neurologist doesn't have an opening until December!!!! How am I supposed to bear that much pain until then? I was ready to end everything on numerous occasions due to the excruciating pain. I'm praying that God steps in and removes this from my life. To all who are suffering,we need to stick together and keep the faith. Let's claim this victory.

TN warriors you are my family!! Watching this I see and hear people who feel what I do!!! I hate that we know this pain but I am happy to hear I’m not alone!!

I cant believe that so many people have the same shit like me

I've had Trigeminal Neuralgia for the last 5 years or so. In the last couple of years, it's taken nearly everything from me: my ability to work, my happiness, my marriage, my health, and I am starting to feel like my sanity as well. I leave the house maybe twice a month. My pain is constant, severe, and daily. Now, I have severe anxiety about being in public or even stepping outside my house. I save what little strength I have to take care of my son, whom I have full custody of. I've tried every medication my insurance will pay for and had an injection directly into the nerve. Nothing helps much, and nearly every medication makes me severely drowsy and a virtual zombie. I totally understand why they call this "The Suicide Disease"...the pain is so severe that there are times you'll do anything to escape it.

TN pain is the worst pain I have ever experienced in my life! It is so crippling and excruciating! I feel for anyone who has ever experienced it!!

I've been suffering with this for years now - yet I've just been diagnosed this week 9/25/2022. I've been treated for TMJ (surgery in 1998), sinus issues, and Migraine but nothing helps... I've been lost friends and family members because they didn't understand why I "looked fine" but was always "complaining" about pain that no one could explain...

I won't give up this will not have my life😕 these videos keep me encourage. I feel like im not alone anymore thanks for your video support👌 peace and blessings to all the suffers.

I am a medical student and often look for patient testiomonial videos to better understand diseases. "My kindergardner sometimes sets it off," I will never forget that. I am so sorry you have to go through this.

I can relate to this sooo much. Feeling like being stabbed with an ice pick.. I had two teeth pulled out when I probably didn’t have to. I’m so glad I was able to find out about TN via the internet, find a doctor and get an MRI. My heart goes out to all of the people in this video.. Thank you for making this!

I have TN and i feel like i am in a living hell and alone. Its hard to want to keep going.

I feel SO seen by this. Thanks for making this.

I WATCHED AND SAW MY SISTERS FACE ON EVERY SINGLE PERSON WHO TOLD THEIR STORY. SHE COULD HAVE WRITTEN THIS AS EVERYTHING THEY SAID I HAVE HEARD FROM HER. IT HURTS HER TO BREATHE, WALK, SIT, EAT, SLEEP AND IT GOES ON AND ON. SHE IS SO STRONG AND BRAVE JUST LIKE THESE PEOPLE IN THE VIDEO. SHE HAS HAD BRAIN SURGERY AND THE DOCTORS ARE TRYING TO FORCE HER INTO THE GAMMA SURGERY. NO THANK YOU, LOTS OF VERY BAD SIDE AFFECTS AND IF YOU CAN BELIEVE THIS, THE PAIN COULD BE WORSE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I LOVE HER SO MUCH AND WANT HER AND ALLLLL OF YOU OUT THERE TO GET THE PROPER HELP. LINDA MC BRIDE

I love each and everyone of you. Been pain free for almost 3 years. The most brutal pain I've ever felt. Love and prayers 🙏❤

I am fed up with this pain from the past 5 yrs. I am 30 now. Few doctors told i am overreacting. Every single day im in pain. I wish someone listens.

MVD after 20 years in 2014. Saved my life!

I'm so scared...... After seeing you guys story, is devastating to me. :( just diagnosed, thought it was dental issues when it started, 2 months ago. It makes me wanna jerk my top and bottom left teeth out!!!! It's just a deep hard pain and also in my jaw. It feels like someone punched me in my face. Dr has put me on gabapentin and trileptol. The girl that lost her car and apartment and savings... Im so very sorry. It is scaring me to death.

Regular chiropractor adjustments after first being diagnosed with TN have completely cured me. I was in the ER 3 times in 1 week with debilitating pain, and nothing they did helped. My mom recommended seeing a chiropractor, and i'm SO glad she did. They learn all about TN in school, and know how to treat it. If you're reading this and suffering, please give it a try. I hope it works as well for you as it has for me!

I cannot believe that in this twenty first century, with all the doctors, specialists​ and amount of money these pharmaceutical companies make out of our pain and misery that nobody can help me and you with this pain 24 hours a day, every single day, actually the pain dissipates slightly when you also hear the noises all the time. If I gave up it would all be gone but so would I be, I have no friends left, just the pain and the noise, I think they are my friends. !! x

Thank you for this video❤. Bless all the participants. This literally made me cry. Unfortunately so relatable.

Thankyou for this video. I have TN and have felt so alone and no one understood what I was going through. It’s a debilitating disease and has bought me the depths of despair. I was finally officially diagnosed on the 16th of December 2020 and had MVD surgery 3 weeks ago in Australia. My recovery is going very very slow nausea and dizziness are my two biggest problems right now. I still have some pain but I am really hoping for the best. I really did feel alone until roughly 15 minutes ago so thankyou so much.

Thank you , this video felt like people were explaining something is so hard to put together for me. Its so hard to explain to people how it feels and to find words to describe it . My wish is to be normal and be a normal mother to my kids , TN please let us live pain free days 😢🙏🏽

I was diagnosed with TN 18 years ago. Horrible Horrible pain! People don't understand. That is so correct. The shocks of pain are unbelievable. People who say you look great don't understand what we go through. I turn my head to fast and wham! It hits.

Trigeminal Neuralgia 5 years. GAMMA KNIFE Oct 26, 2023. 😢 my story a unique one as the Dentist left an object in my jaw that caused my facial paralysis. I also suffered a CSF leak out my left nostril and had an endoscopy surgery to repair a Crack in my skull. I would love to share my story in hopes it begins healing and help others. 🙏

I relate to all of this. I've had it for 15 something years now. This made me cry cause it's me. I am living through this. Everything they say is true and I'm living through this. I have an MRI in middle of May to determine what the next step is.

I feel like I’ve been treading water for so many years. I don’t want drown, but I’m exhausted and it’s just taken everything.

My heart goes out to these people. I was diagnosed around seven years ago after a misdiagnose of a sinus infection. Fortunately my pain, while extremely intense as these people mention, is less frequent and more seasonal. Had a rather difficult bout a few days ago and would have considered anything, including invasive surgery just so I could get some relief. And yes, unless you've experienced TN pain, it's very difficult to explain to the non-sufferer.

For anyone suffering, I know they’re illegal in most places, but I have a strong feeling that psilocybin mushrooms can help. I also get cluster headaches, the pain is identical to me so maybe my headaches are more TN. Mushrooms stop my headaches. Even a micro dose. Just wanted to plant that seed.

Thank you for your courage and for sharing your experiences. I shared this video with my family so they understand why I feel the way I do and am the way I am. Because I ‘look’ ok doesn’t mean I am.

I was just recently diagnosed and it is absolutely debilitating I can't even work because of it or sleep or enjoy life and drs just look at me like I'm crazy

I didn't know the term but the pain comes and goes. I would make 1 hour voice notes ... Trying to help my jaw relax. This would help me forget about the pain and pressure on my face. I didn't want to tell my family about it. I feel embarrassed to be 27 with a neurological issue of a 40. All I know is, The pain is gone and I didn't do any surgeries. I'm worried it's going to come back. I assist my gums by brushing my teeth. I don't know why this is happening to me. I don't eat breakfast cereal without warming the milk. Long story short, I've decided to stay away from hard foods. I feel like an 80 year old in a 27yo body. 😢 I've always tried to keep healthy but I guess my activities were not good enough. 😢 I'm happy to find this channel. I feel better knowing I'm not alone. God says it's one of the effects of toxic tap water. I'm from South Africa ❤

I wish somebody could help me diagnose this. I get random episodes of facial pain and everything from my cheeks to ears to eyes to nose and head hurts so much. I have been asking for death over it for so long. All the doctors till date have just given pain killers. I can't imagine how much this video touched me

This video is a very actuate description. I have TN2 it's pretty constant, I rarely have the electrical shock pain, but when I do it is in my eye. The last few months my vision has changed a great deal. I've had this for approximately 10 years. I've have two teeth pulled and root canals and many unnecessary rounds of antibiotics. I finally got a diagnoses three days ago. I've started the carbamazepine and feel completely loopy and my mouth still feels like acid. Praying for all of us. This is rough.

I had my FIRST TN "Attack or Flare up" about 2 weeks after My 26th Birthday... it came out of NOWHERE.. One Minute i was Talking to My Partner, Then I Just Dropped and started SCREAMING AND WRITHING in Pain.. it felt like my jaw, My Face AND My Head had been hit by a bolt of lightning... Nearly an hour later it calmed down and i was just Laying in My Shower Crying with My Partner Holding me... i went to My GP and as soon as i told him What happened and how it felt he INSTANTLY put me on Tegratol first on 400mg then up to 800mg, and im.also on Lyrica JUST so i can sleep at night.. i havent had an attack in the past week.. i need to go for an MRI to Discover what type of TN i might have and what options i have then.. for me so far ive had 3 MAJOR Attacks where i couldnt think straight, couldnt talk, Couldnt stand... all i could do was writh, Wail, Beg Plead and Cry... im scared of my tomorrows, When BEFORE.. i used to LOVE what tomorrow Brang...

I was left with AD from Glycol Rhitz, painful numbness. Its hard to explain....I'm tired to talk to tell people. Praying for a cure.

I have been dealing with TN since 2008. Unbelievable pain! What else can I say!??

diagnosed this afternoon- luckily only three months worth of horrific pain- and a dentist that listened.

it's been 2 year i'm suffering from TN. whenever it start pain i feel like i wanna die. i don't have words for it ...

I've been dealing with this for a little over 8 years now. I've been on just about every medication there is and have had horrible side effects to just about all of them except for the one I've been on for several years now. It.....helps... but it certainly doesn't get rid of it by any stretch. What is worse is that I was diagnosed with it a few months before my youngest child was born so he has never known me not to be in pain and he now has a phobia of storms (one of my biggest triggers is changes in barometric pressures). Flying is... well I am in so much pain that I have to take enough meds to knock me out and even then I am semi-conscious and am clutching my head in horrendous pain the entire time, but am otherwise unaware of anything else going on around me. Apparently I tend to scare the crap out of the flight attendants. Even driving for too long, or over terrain that is too hilly or large bridges can mess me up pretty bad. Opening the oven and the sudden change in temperature... just so many things that you take for granted prior to this condition and now you realize just how much they effect you. When the migraines hit people at work ask me all the time how I can stay at work with a migraine and I respond, "with my TN a migraine is a good day, cause it could be so much worse if one of the other two branches flared up instead". I have days I can barely talk, days I can't really eat. So yeah, a migraine is no big deal. 🤣

I can’t even describe how terrified I am that my TN will come back. It’s in remission now but if it comes back I don’t know if I will survive.it’s like living in a nightmare.

I have just been diagnosed with this, the pain is unbearable, I would put down a animal if it was in this pain, don't know how long I can hang on, broke my back once, my neck twice, ribs, wrists, ankles, any of those pains are a walk in the park, to this pain, Please help

Never loose hope be positive keep fighting god bless you all ❤️

I am 36 and in less than a year I lost my career, lost all savings, I cannot drive, I am fighting for disability and I live day to day in pain.

I'm 40 and suffer, I can't believe we live everyday of our lives in constant horrific pain.

Omg I am so glad to find this video. I finally found other people who have my exact pain Electrical socks shooting pain inside your check from the ear to the jaw😟

God I ask you to help these sick people! I love you and pray for you ❤️

I'm also suffering with TN and I also cried watching this video. My life has changed so drastically since it started. The emotional toll that it takes on you is almost as unbearable as the pain. I've always been a half glass full type of person yet TN challenges my optimism as this affliction is so relentless and it just feels hopeless. Not to mention the rising cost of healthcare combined with the lack of support and treatment for this condition. This thing has killed my 'sliver-lining' mentality. Some people dream of hitting the lotto, I dream of a TN free existence. My heart goes out to my fellow TN sufferers. I'm so sorry this happened to you, to us, and to anybody, ever.

I have it and it completely incapacitates me at times.

😢❤💓💖 I don't talk about it anymore. If and when I'm in pain the ONLY person I tell it to is my daughter.

The first time I had an attack of TN was in 2016. I was going for a weekend trip to Madrid and the pain in my jaw did not allow me to eat anything, not even soft food like the Spanish flan that I adore. I didn't know what was happening to me as I had never heard of the trigeminal nerve. I thought it was something with my teeth. Coming back home I ran to a dentist who took off a perfectly healthy molar. Only after several visit to doctors I was diagnosed correctly and prescribed with a medication - Carbamazepine - that made the pain disappear almost instantly. I thought it was a one time problem, but a few months later the pain came back. That time the medication took several weeks to eliminate the pain. Again, a few months later the same story but this time the pain did not disappear completely and I had to continue taking the med day after day, in spite of the side effects. At least I could live, even if permanently tired and feeling low. Two and half months ago the pain has returned, with a vengeance. Even with massive dosage of Carbamazepine and Codeine it never goes away. I cannot even sleep in horizontal, because the position brings the pain to the maximum level. I don't know how long I can continue in this way. Doctors do not seem to take it seriously. I am making plans to end my life if I cannot feel better soon.

I’m in tears right now knowing so many others suffer with this horrible life changing condition. Honestly the pain gets so bad I just want to end it all, I’m currently going though a bad episode and was in the ER last night for it. I hope one of the surgical treatments will work for me but from what I’m reading, I’m kinda wondering if anything is gonna help 😢 God bless anyone who is suffering with this, I believe it’s hell on earth

The MOST horrific thing about this condition is they don't care enough to even look at other treatments!

I'm thankful that I don't have TN pain on a daily basis, but when I get flares the pain is off the charts. It's like getting stung by 1 million bees. There have been times that the pain gets so intense and comes on so suddenly so I scream. People look at me like I'm nuts! I sure pray they find a cure for TN, as well as EDS. How many of you with TN also have EDS?

I am losing this battle.Admire. all of you with strength to carry on.I do not.Just to tired,worn out,tired of putting wife through this.Better to go so she can get on with her life . Just can't do it much longer.Peace and joy to all who see this.

I’ve had this , the only thing that i knew that worked was by chance here in minnesota, it was -25 below zero and while i was outside, i could actually swallow or what hav you without any pain but couldnt stay outside forever. Yes they tried everything but nothing worked except morphine while in hospital which then i became addicted too but it all worked out thank god! Anyone going through this now, seek help, dont give up,I also like to thank the doctor that finally diagnosed it and a dr. Tynon who i think is or was from st paul minnesota

I've just been diagnosed with it never felt pain like it, in from UK England I've lost teeth because of this thinking its my teeth

"I can't remember words" I miss my mind the most. ATN Diagnosed November 2019.

I have had this disease since I was 16 years old. It Comes And Goes and I am in my 60's, I have just enough pain to let me know it is their, I can't sleep on that the left side of my face.. It I no fun having it for shore, I keep busy. just to keep my mind off of it... When I first got thise disease, I could not comb my hair or brush my teeth.. the whole side of my face felt like continuous Shock of heat sting pain.. not sharp pain, but steady constant pain.. not letting up at all.. I hate it.. I hope they come up with a cure..

I've had this for 31 years fortunately at times there were years between attacks. I have needlessly had most of the teeth on the right side of my mouth removed. diagnosed 2 weeks ago. its torture. Gabapentin has saved my life. Love to all who suffer with this awfull disease. Stay strong.

I was pregnant when I had my first attack. Started with a deep, dull ache in my jaw. Drs, dentists, Drs dentist but no joy. Neurologist said there was nothing wrong with me. Holed up in my room, tearing out my hair by the roots, punching myself and slamming my head against the wall was my life. Without the baby inside me, I wouldn't be here. Those tablets were in my palm. I'd given birth to my daughter 2 yrs prior. She came out bum first and and I birthed her naturally without any pain relief. I'd do that again 100 times rather than suffer through TN for an hour. A new Dr prescribed Pregabalin which has it under control. My heart goes out to all who are still struggling ❤❤

I have TN bilaterally , it breaks my heart to know I’m not alone and that more endure this pain.

My BESTFRIEND my SISTER suffers from TN The More I Learn, The more my heart breaks... the more I wish I could Magic it away... But It doesn't help... So I Pray To The Father To Take This Horrible Pain Away...

I have had TN1 since 2006, I am furious at the World Health Organization for not recognizing TN, which would free up federal funding for research as well as get recognition from all areas of the medical community!!!! People just have no idea what is really happening to us.....the pain, fear, isolation and depression are almost too much for any person to endure. I am so angry!!

I have suffered with TN for 20 years and the pain is constant and never goes away! There are times the pain is so severe that I think of killing myself! The pain I have spreads out to three different locations at the same time and that is my left ear, left jaw, and the left side of my throat! The pain in my ear feels like someone is piercing my ear drum with a very sharp pick! My jaw feels like my jaw bone is being crushed in a vice and my throat feels like a shocking knife stabbing me in the back of my throat or like a bumblebee constantly stinging me! The pain normally is around a 4-5 scale and without warning shoots up to a 10! When this happens I just completely stop doing anything! I grab my face and squeeze as hard as I can and just groan as loud as I can until it subsides! The Dr told me he could take out the nerve but my face would drop as though I had a stroke and would have to have all my teeth removed from the left side to prevent myself from accidentally chewing my cheek and tongue! I’ve tried meds that seemed to help but was diagnosed 3 years ago with leukemia and had to stop those meds because I cant mix them with the chemo therapy drugs. Having said all that I found my faith and trust in Jesus Christ has helped me more than anything! Because I know He is the creator and the creator can fix what is broken! Although I still suffer with TN and now leukemia, Jesus has given me the strength to endure it! When the Dr’s are unable to help, Jesus Christ can fix anything! I give all praise to Jesus.

I can just pray for y'all, please stick together with your own people 🤲

OMG! THIS IS ME! I have been having this FOR YEARS thinking I had ear infections and would go to a walk in clinic and they would tell me my EARS LOOK FINE! I would tell them, "How is that possible with the PAIN I AM HAVING"? I had an ENT work up years ago and they found NOTHING. The saddest part is I am a NURSE and NEVER GAVE A THOUGHT TO A NEUROLOGICAL ISSUE! Not until a few days ago, when I was describing my symptoms to my niece (also a nurse) who said, "It sounds like you need a neuro consult". So I started researching and came across videos describing TN and I just wanted to cry because I knew EXACTLY what they were describing and felt I finally wasn't CRAZY!!! After years of being "blown off" by so many doctors I now know... I AM NOT CRAZY! Although I am extremely grateful I have not suffered near as much as many describe in this video. I know the pain but it is very intermittent (thankfully) but seems to be getting worse. I am so thankful my niece mentioned what I vaguely remembered from nursing school so many years ago. I feel so STUPID that I didn't even think of it and should have been more insistent with the doctors. Thank you for sharing your stories.

The pain for me started in 2010. The pain was strictly on the right side in the beginning but was sporadic and would only happen for a few days or a week or so every few months. I didn't get officially diagnosed until 2016 when my TN started on the LEFT side of my face as well and it got so bad that the flare lasted 10 months. I tried so many things before I finally had an MVD in May 2017 (I was 29). Then in the first week of April of this year my TN on the right came back with a vengeance. It's flared non-stop for almost three months and I'm struggling as I'm also having sporadic flares on the left now too and where I live there isn't a neurologist who takes my insurance so I had to be referred out and can't even see a neurologist until August so I'm relying on my PCP for help in managing pain and due to recently being diagnosed with several health issues she's worried about my reactions to meds (I have MCAS so it's a valid fear) so I only have Gabapentin, Tylenol, and alpha lipoic acid for pain management (though she did tell me it was okay to take one of my valium, which are for my back, if I needed it). I just try and take it day by day but I barely survived the ten month flare on the left side five years ago. So this flare scares me so much. My heart goes out to everyone who is dealing with this agony.

My husband has trigeminal neuralgia , he has such debilitating pain and when he gets these attacks he says it is the worst pain and i see him go through ,and i wish i could help him . He says it is like an ice pick stabbing in his eye and down his face. I just want him better and i want everyone else who has this to be better. It turns people into something they are not. I pray for you all .

I have Trigeminal neuralgia. Its a nightmare. Ive had mvd surgery August 8. I just had Percutaneous balloon compression 5 days ago. Now only my tooth hurts. It constantly throbs and sometimes pain will spike. I can deal with this quietly atleast. Im having the top right jaw tooth pulled. Its a failed root canal. I have had Trigeminal neuralgia 21 months. I got this root canal 21 months ago. Im hoping this stops the pain because its been causing it. I just need it to stop. I cant tske care of my kids, my house, my life. My husband has to do it all. We are drowning in stress and misery. Ive only had bad pain twice in 5 days. So thats great. None would be good. Before ballon surgery i was having pain 8 to 14 times every 24 hours. I keep a constant ache 24/7. Its alot better after ballon surgery. Its now just the top right jaw tooth instead of my entire right side of my face. When i touch the pne tooth it aches more. Other teeth dont do that. Hurts to bite down. Im hoping it will stop pain if i remove it, not cause more. This really has ruined my whole life. I too am afraid to leave the house alone. Im afraid to make phone calls. Im afraid to lay down. Laying down is a big trigger. Life is better now after balloon surgery. The constant ache is and tooth pain is easier to deal with then my entire face trying to kill me with pain. I have screamed my self horse its hurt so bad and for so long. Each pain episode lasts on average 40 minutes to a hour. Trigeminal neuralgia is life ending nightmare of nothing but pain and misery.

I'm a little bit frustrated because I have done this and got my life back and I have been spreading this info for a two day and I don't think anyone tried it...this puzzles me. This is what helped me a lot... Use blender or nutri-bullet: 1. Organic Ginger as long as thumb 2. 1 and a half Organic Lemons 3. One flat teaspoon of Cayenne Pepper 4. 4 1/2 Cups of Organic Black or dark Purple Grapes 5. One to 3/4 Organic Mango. I see that most medications are not working so why you wouldn't try something natural which has giving me positive results? Blend this combination you should get like three 8oz cups. The Mango is not as important as the other ingredients. I had this and started to fell relief within 35 mins...honestly! No bullshit! The ginger and cayenne pepper are anti-inflammatory and the grapes and lemons work more for your Lymphatic system. The pain I felt before was like a electrify knife is being shoved into my brain. The jolts that I got from that sensation/pain was unbearable...this was happening like every minute constantly. I am going to be consuming this combination for several days as meals and also other fruits...going raw. I had 9 cups yesterday and my pain went from a 10 plus to 2. I think if I continue the combination will nullify the inflammation. If you can try to cut back on acid foods like meat, chicken and diary...they do more harm than heal. Please acknowledge if you read this, I need to get the word out because it works. Always consult your health care professional to see if you are allergic to any of the ingredients above. Lets me know if you try it. Show less REPLY

I just got diagnosed with this, but the pain is only one aspect. I experience shaking, grimacing, numbness, vision and memory issues... and much more. I think we have to cover all the symptom L’s more

Get the MVD surgery. My TN is seemingly gone. It's been 6 days since surgery, and recovery has been really hard so far, but I would rather deal with this than deal with TN for the rest of my life. Get the surgery.

I wish that I could tell my story, but...I really have nowhere to go! I have been living with TN for 17 years now, and, I've been poor half of my life. My dad owned a grocery store that made millions a year, but when it ended in 2003, I didn't know how tough life would be afterwards, as TN started in 2006...and there wasn't a lot of research back then about it! I'm 39 now, and it has caused me to scratch, and punch, and slap at my face and scalp, screaming at the top of my lungs, just because I would rather feel a "lighter" pain than this one... When I was diagnosed in 2011, the pain was only on my scalp, and on my eyebrow, but, it has developed into atypical...it's on BOTH sides of my face, and now affects: both temples both ears back of my head my whole chin both eyebrows my neck a portion of my right clavicle (weird??) and worst of all, BOTH NOSTRILS...the most sensitive part of my face!! The frequency has increased, as has the INTENSITY, and at times, it's the shocking, at times its the crawling, at times its the burning, and at worst, it's all of them, making rounds around my head, making me scream and shout......the worst thing I had ever done, was bash my head into drywall (soft wall, but a wall nonetheless!) Do I have a mental condition?? IF so, it's because of this TERRIBLE TORMENT. I can't eat right, I can't sleep right, sometimes being woken up because of it...I don't shower as much anymore because I've just given up on everyday life. I can't stand it, after 17 YEARS, I just don't know what else to do! I do take 5 medicines for it (it's all i can afford): Gabapentin (600MG, 1 tablet, 4 times a day [2400MG]) Carbamazepine (200MG, 1 tablet, split in half, 4 times a day [800MG]) Baclofen (20MG, 1 tablet, also split in half, 4 times a day [80MG]) And two over-the-counter meds: Ibuprophen (200MG, three tablets, 4 times a day [2400MG]...WAY over the limit, I know) and Bayer Back and Body (500MG, two tablets, 4 times a day [4000]...ALSO way over) My regular meds are as they should be, but I have been taking the two NSAIDS (AGAIN, I know...too many NSAIDS, PLUS mixing two different NSAIDS runs the risk of one potentially cancelling the other, but that has not been the case here), because the medicine by itself hasn't been enough to cope with the TORMENT...and yet, most days, I only get about 2 hours each 6 hour block that I take them, where I get any "relief..." that is, IF they work at all. Most days anymore though I find that these medicines I have become used to, and just don't cut it...there are days they do work, and I'm glad, because I can breathe again, BUT, the problem is: WhenEVER I have pain remission, when the pain strikes back up, it's TWICE, sometimes QUADRUPLE times worse than before!! I keep myself depressed, because I have seen the non-invasive surgery called "Gammaknife" (or CyberKnife) Radiosurgery...and I am depressed about it because I CANNOT afford it...I live in Kansas, and they run about 8,000 to 12,000 EASILY...and, I'm aware of the statistics (approx. 90 percent have had remission from 19 months to 5 years), but IF I could've afforded it, I STILL WOULD'VE GIVEN IT A TRY!! I've got free healthcare through Ambetter, but it wouldn't cover such a surgery...so, catch 22 for me, i suppose. I don't know what else to do...I am one of those cases that hurts themselves just to feel a pain that is different than this one, but I KNOW that it's causing me more pain, and MOST LIKELY making the TN worse.....and NO...I know it's called the "suicide disease," But, that's not in my Belief...I'm a Believer in Christ Jesus, and I REFUSE to take my own life....I would RATHER suffer the pain. But, STILL, I just...I, I don't even know what to say!!! I dunno...I just wanted to share a story that is shown through the eyes of a poor man, who has no way of getting help, can't afford it, has no defenses, no where to run, I can't stand, run, sit, stand, lay, or anywhere else I can go to escape it. Rest assured, I want you to know, for the rest of you, there's still Hope...I know there is, because I Know Him... ....what we face here on this earth, DOESN'T COMPARE to The Glory to be seen later...... ....I just wish there was a way that I could enjoy a little bit of it down here.

I am suffering from that same pain for many years, until my naturopath doctor told me that I might have TN. So she told me to spray my head with DrMaggie magnesium spray, spray dry repeat technique for an hour, daily. And it did work. I thank God for giving me Dra. Jean Cruz who is my pain saver.

ive had this for 6 years, ive managed it with cannabis after trying so many prescribed drugs from my doctor, today i found out what this disease is by accident. Neurologist couldnt tell me, my doctor couldnt tell me what is wrong and ENT could not help me. today i feep blessed that i now know what it is. trust me CBD and THC help. CBD more so. Medicinal canabinoids are what we all need when suffering an attack.

I just started getting symptoms about a week ago...like electric shocks going across my face. Then I also get deep pain in my mandible like a tooth ache but worse. And stabbing in my right temple. It is awful.

April will be 3 years. We gotta get a cure. I'm tired of this living hell. I used to be so strong. Worked in warehouse for 6 years, could live 90 pounds and head bang at Rock shows. Now, most days my 11 lb cat is hard to pick up, even if I turn my head too quick I can get dizzy and sometimes pass out and basically just had to give up my social life and going to live music. I'v literally had to change and give up my whole life. Because I'm not missing an arm or a leg or I don't have full-blown cancer, the intensity of my pain gets blown off so much. I have no support from my family and one by one "friends" have fallen off. But of course when I was going up doing well in life. Taking cute pictures posting them on social media people wanted to hang around. I can't do this for the rest of my life I'm not even 29 yet. Ever since I was 6 years old and I understood what money was I wanted to get a house for my mom and I, since she can't take care of herself. I worked really hard jobs to get high paying money and one after another I've just had health issues for the last 7 years. I feel like my life ended at 22 and I've just been a ghost trying to push through. I can't do this forever alone and I shouldn't have to. I particularly got my trigeminal neuralgia from a ping pong size tumor wrapped around the trigeminal nerve. Three brain surgeries later the damage was already done. I don't understand how the body could be in so much pain and still not die. I used to be so kind and loving. I would always get compliments about my energy. Even from a young child I would draw people towards me. I let too many of the wrong people in and I've been very sick since. My soul is breaking. #trigeminalneuralgia

I was diagnosed in 2020 I thought I was going crazy cause the pain is horrific 💔 😢 it has been four years now I truly understand God will make a way 🙏 in his timing stay strong 💪

I came down with TN and went to the dentist thinking I had a cavity. After two dental visits and excruciating pain I was told by a specialist that I had TN. Bob Chan on KZfaq (a herbal doctor) explains what causes TN and shows you exercises to get rid of the pain. I am almost pain free now because of the exercises. I found out that sleeping with a fan and having the air conditioning full blast on my face in the car is what caused the TN. I knew I was healthy and that something caused the facial pain. This is a hideous disease and there isn’t much help out there. Find out what caused your pain. I wish you the very best and a pain free life.

I AM CERTAIN I HAVE TN...ONE NIGHT TRYING TO SLEEP, I WAS PUNCHING MY JAW OUT OF FRUSTRATION AND PAIN. BRAINSTORMING ...I WENT TO THE PANTRY AND GOT A MAGNETIC CHIP-CLIP AND PINCHED MY BOTTOM LIP (EAST TO WEST). LOW AND BEHOLD IT WAS INSTANTANIOUS RELIEF. MY CASE IS EXTREMELY SPORADIC BUT AS EXCRUCIATING AS ANY HUMAN CAN IMAGINE! IT MAY DISAPPEAR FOR MANY MONTHS, BUT WHEN IT HITS, I UNDERSTAND WHY IT IS COINED AS "SUICIDE DISEASE"!

i’m 16 so i’m really young for the TN/TMJ diagnosis and when i describe what i’m feeling to my teachers they wouldn’t believe how bad it is. :(

I've been battling trigeminal neuralgia for about 10 years and just posted a video about what worked for me and what things I've tried kzfaq.info/get/bejne/q9poZZqHnNzUpWQ.html

I have TN. Just had a tooth extraction last Monday and since then, I've had constant every second lightning pain across my entire jaw, cheek, ear and neck. Stabbing, electrocution pain. Had to get multiple Numbing injections just to sleep. No pills help.

I’m so sorry for all who suffer from this.