Trigeminal Neuralgia patients describe life with TN

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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

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.

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.

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.

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

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.

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.

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.

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.

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

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.

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.

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.

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!!

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😰❤️😰

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 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!!