There are many ways to describe the pain of trigeminal neuralgia. Lightning bolts, electric shocks, zapping, stabbing, burning, aching are all perfect descriptions of this horrendous facial pain.
Explaining the Pain of Trigeminal Neuralgia to Help People Understand
Sometimes non-sufferers may think that some of those explanations are far-fetched. They’re not. Those explanations are real.
Understandably, it can be difficult for friends, family or colleagues to fully comprehend the extent of the pain.
But if we explain trigeminal neuralgia well enough, people should be able to understand.
People can have empathy even though they don’t live with the condition.
How I Explain Trigeminal Neuralgia
Please watch this short video to see how I explain the pain.
All Trigeminal Neuralgia Sufferer’s Voices Need to be Heard
I often write about my facial pain on this blog and make awareness and information posts for the End TN Awareness page. I have also written a few posts about TN on other websites. (This page has information about TN and links to posts I have written.)
But I believe other TN sufferers’ stories should be told too. I asked TN support group members to fill in a questionnaire about their pain so that I could share their voices on my blog. Their voices are important and need to be heard.
In Their Own Words – #TNvoices
Melody
“It feels like someone poured gasoline on one side of my face and lit it on fire. It also feels like I have an electric fence down portions of my face. There are times my teeth hurt and the roof of my mouth hurts.”
John’s pain began when he was 62
“I get continuous electric shocks along my teeth. My wife took me to ER when it first happened. I couldn’t talk. If I opened my mouth the tiniest bit, the shocks started it up again. The doctor at ER told me to see my dentist and sent me home”
Veronica
“My trigeminal neuralgia started when I was 66. It is like toothache in my face. It is accompanies by a burning sensation like a severe sunburn and deep stabbing pain.”
Helen W’s pain began when she was 50
“It’s like being struck by lightning in your eye and face, with dragon fire before and after….but up to 50 times a day.”
Lyn Brown’s pain began when she was 50. She’s lived with it for 20 years
“My TN is constant. It burns, throbs and sometimes feels like a constant toothache. My eye waters and hurts. Zaps and shocks come from nowhere.
When I sleep, I am not lazy – I am tired. When I let you down, it’s because I can’t leave my house – it’s not that I don’t want to meet you. I know it’s hard to understand that I can manage to do things one day and not the next…or even one hour.
My pain is hard to understand. It is not a headache or a toothache. The drugs are just awful but I can’t do without them.”
There is More to Trigeminal Neuralgia Than Physical Pain
Trigeminal Neuralgia affects so many aspects of life including eating, drinking, and sleeping. Many people struggle to wash their face, brush their hair or clean their teeth. Work, family and social life can all be affected. Some people can’t even bear to leave their home for fear of cold weather triggering their pain. As with many chronic pain conditions, sufferers can become depressed, lonely and live with feelings of guilt and anxiety. Even if they experience a remission in the pain, some people live with the fear of it starting again. Trigeminal neuralgia can be extremely controlling.
#TNvoices
Chris
“I get lighting bolt pain in my forehead and cheek. Sometimes my eye too. It’s been in remission for four months. I should enjoy it, but I can’t. I live in fear that it will come back. It will. It always does.”
Anne is 47 and has had TN for 6 years
“If the shower touches my face, I scream in pain. When I go out into a breeze, it is torture. I have changed since this monster came into my life. I used to be outgoing but now I am a different person.”
From an anonymous contributor
“I am a 56 year old, otherwise strong and healthy man. But those bolts of lightning to my face drop me to my knees. It has taken more from me than people realise. I lost my job last year because of it. I feel guilty because my wife is working two jobs to pay the bills.”
Julie
“I have atypical TN That means I don’t get electric shocks but I have 24/7 burning pain. It won’t go away. Nothing has made it stop. It is depressing living with this pain.”
Who can get Trigeminal Neuralgia?
The short answer is anyone, but it is more likely to affect females than males.
There is a belief held by some medical professionals that the condition only affects people over the age of fifty. This often leads to people being told, “You’re too young to have trigeminal neuralgia.”
This is not true. It is more common amongst older people, but young people, even children, can have trigeminal neuralgia.
Anonymous
“My daughter’s TN started when she was only 8 years old. What kind of life is this for a child? She is on strong meds yet she still gets shocks in her teeth almost daily.
I really wish it was me, not her.”
Hippyrockchick’s facial pain began when she was 23
“It’s like red hot stabbing pointy knitting needles over my left eyebrow, down to (and in) my left ear, and my lower jawbone.”
An anonymous contributor was 23 when their TN started
“It’s an ever constant battle with pain. There is normally a constant aching, throbbing pain in my cheekbones, with shooting pain that comes and goes that can be in either cheekbone or anywhere on the forehead. It leaves me breathless and barely conscious.”
Jeanette Lopez Bulthuis’s pain started at 25 but was misdiagnosed for over 20 years
“It’s like a lightning strike to my forehead that can bring me to my knees. That pain stays with me for about 5 minutes to an hour. Pain, as if someone is tattooing my cheeks, constantly. Ice pick in the ear and my left eye feels like it’s going to burst.”
Tiffany
“My pain started 9 years ago when I was 21.
I get lightning bolt pain mixed with a 3rd degree burn that’s like being scratched by wolverine.”
Shannon’s TN started when she was 27
Shannon’s pain began 17 years ago but she was undiagnosed until 11 years ago after it was discovered she had multiple sclerosis. Sharon blogs about MS at MSnubutterflies.
“It’s one of the most excruciating pains you can imagine. It’s like having the worst migraine, toothache, ear infection all wrapped into one, but it doesn’t stop there. Along with that are facial muscle spasms, twitching, sharp, and stabbing pains. It is literally like being stabbed in the face with an ice pick.”
J. Hinojosa was 33 when TN began
“It feels like someone has shoved both quickly and slowly at the same time something like a knitting needle into my face that’s hooked up to and electrical current with someone evil like sitting there flipping the switch on and off. Then there’s the constant pain, the feeling like you’ve been hit really hard and your jaw and temple feels raw and beyond any sore you’ve ever felt. And finally for me, the feeling like my cheek is so numb and wants to detach from beneath my eye to slide off.”
Catriona McArdle
“My TN began when I was 35. I’ve lived with it for 41 years with a few periods of remission.
TN is a pain that you cannot get away from.
It is totally life changing.”
Trigeminal Neuralgia Needs Awareness So We Need to Explain the Pain
There are treatments and medication for trigeminal neuralgia, but they often come with problems and they do not help everyone. Some treatments won’t work at all for some people and many people can’t take the recommended medication at all.
There needs to be more understanding about the condition. By explaining what the pain of trigeminal neuralgia feels like, we can hopefully achieve that.
Please Share #TNvoices
Trigeminal Neuralgia Awareness Day is on the 7th of October.
Awareness days are about making people’s voices heard. Please share this post on social media using the hashtags #TNvoices #TrigeminalNeuralgia
Thank you to all the TN sufferers who have contributed to this post. Unfortunately, I can’t include everyone’s responses, but there will be more contributions in next week’s post and I will share #TNvoices pics on my Pinterest, Facebook and Twitter pages.
Great post TN2 & Occipital neuralgia
Thank you ?
Thanks for commenting.
That sounds VERY UNPLEASANT!!!
Yes, it is. Thank you.
Really good descriptions of TG pain, Liz – it is so difficult to put the feelings into words. When I was still working we used to teach the students that nerve pain in any part of the body is one of the hardest to treat – now I know how true that is (I know my nerve pain is in a diff body part!), C x
Thank you, Claire. Your pain might be in a different area, but it’s also extremely painful. Nerve pain really is so difficult to treat, isn’t it?
Oh Liz, you have done such a FANTASTIC job with this post. And that video… you have me in tears. I don’t have TN but you’ve given me an insight into it with such a personal edge from yourself and others. It’s so important to share experiences like this to raise awareness and help others feel less alone who are going through something similar. Amazingly done, Liz ♥ ♥ ♥ ♥
Caz xx
Thank you so much, Caz. But I really didn’t mean for you to end up in tears. Awareness really is so important.
This sounds just awful for those that suffer with it. Thank you for helping others understand.
It is pretty awful. Thanks for commenting.
Reading this really opened up my eyes. It also put my TMJ issues that I complain a lot about in perspective. Like that hour of shooting pain after trying to eat something difficult doesn’t look so bad now. Sometimes I think people who don’t suffer from things like this should read what it is like when they complain about far more insignificant things. It is a massive attitude changer, and helps me learn about something I wasn’t this familiar with before.
Oh Erica, TMJD is extremely painful. It actually involves the trigeminal nerve. So please don’t think your own pain isn’t as significant. It is. I’m sorry you deal with that.
My pain started at 36, it was first a stabbinf pain in my eardrum. But no doctor could find out what it was. I was treated for a nerve inflammation and the pain was gone for a while. But then it stated again, but the treatment didn’t work. On the contrary, it spread. Sometimes it went all through my upper jaw, like a toothache, but all teeth hurt and it stopped exactly in the middle. It wasn’t that bad, just a few times a day for several seconds. But then, it went through both upper and lower jaw… and I went to the doctor again, and she said “Well, that sounds like trigeminus neuralgia!”
And that was all… but then, 2 years later, the pain went in all 3 branches, and you could actually SEE the nerves acting up. Like… literally half of my face just DROPPED and I couldn’t move a single muscle.
It was like the worst toothache, but all over my left side. And it went from a couple of episodes up to 32 attacks per day. All between 5 seconds to 2 minutes.
I take Gabapentin now, but I still feel the attacks, not as present but they are there!
And when I get migraine prodrome, nothing helps at all.
I cry in pain and I actually know that the worst is yet to come…
You really did such a great job of explaining this and providing info, I was not familiar with this previously. I am so sorry to all that have to endure this pain.
Thank you
I didn’t know much about trigeminal neuralgia before this so it’s really opened my eyes. I really feel for you and everyone suffering with this horrible condition.
Thank you.
My attacks are happening so frequent just now but my worst ever one was just before Christmas when it was so bad I actually (embarrassingly) wet the bed as I physically could not move at all. You describe the pain so well. I am like yourself and I’m constant pain everyday. It’s the most excruciating and debilitating pain. I would not wish it on anyone
Wow! Thank you for sharing. So informative. People who live with this are heros!!!!
Thank you, Gina. We’re not really heroes. We just don’t have a choice
My aunt had it and she went into depression after that. It is very important for everyone to know that it can happen anytime and it gets on a person’s nerve. Thank you for sharing this awareness post.
Thank you. I hope your aunt found pain relief.
wow! I can’t begin to image that pain, but how you described it seems so shocking! and to live the pain every single day! all this is new to me, great job at creating awareness!
Thank you
That is so shocking! I hope I will never fully understand the horror of it. The pain is always hard to handle but such pain… that’s definitely something else. thank you for gathering it here, it pains to read it but it is important and helps to understand
Lyosha, I hope that you never fully understand either. Thank you.
55 now 6yr sufferer. I cried everyday at work and my eyeball felt like it was going to explode and pop out, my face gets such nerve pain its undiscribable they call it the suicide disease for a reason because when it hits you thats literrally what you want to do.
Biggest trigger cant chew anything on right side and i clench and grind so wear a nightguard it sometimes helps a bit. At 54 the migraines with and without aura started which adds to the extreme, excrusiating pain and torment i already suffer. I can only pray a cure can be found or at least better help.
This sounds very painful to have to deal with, and I agree many illnesses people can’t see make it harder for them to understand. Thanks for writing this up and helping bring more awareness to the topic.
Thank you
After detoxing from an antidepressant, I had brain zaps and it was debilitating. But, it only lasted a couple of days. I couldn’t imagine it being a permanent fixture in my life. This really opens my eyes to the pain that TN sufferers endure and hopefully awareness can provide a cure.
I wasn’t familiar with this before. You did a really good job explaining and spreading awareness especially for younger people who may think they have this who get dismissed by doctors. I loved that you added comments from others on what it feels like to them.
Thank you
It sounds so miserable. I had never heard of this until I connected with you.
This is an excellent post. As a TN sufferer I can relate to every word. It is truly horrific. Thanks for helping raise awareness.
I’m sorry that you also have TN.
I’ve heard of this before and it sounds awful. I can only imagine that level of discomfort and pain. Thank you for bringing awareness to this. x
This sounds horrible to deal with. I am sorry. It is too bad they can not find some better ways to help you and the others suffering. 🙁
I can’t get over how many other sufferers you quoted just in this post alone. What a dreadful disease to endure.
Thank you for this article as a TN warrior I can say this life altering disease is a torture I wouldn’t wish on my worst enemy. Between the pain and meds, I grieve for the life I once had.
I’m sorry that you have to deal with this, Courtney.
when I get a severe attack, i can only describe it as someone getting a very very real ice pick or sledge hammer and continuously beating it into my face with unexplainable force along with thousands of volts of electric shocks striking through my tortured facial nerves. eyes tortured with the feeling of sewing needles being embedded. Too in shock to vomit, with a pain no animal could bear let alone an ordinary person like myself and the wondering what i could of done to deserve this . Dont know if eventually i fall asleep or passed out from the pain. knowing if i touch my tongue with my teeth, or do a bit of bending over doing gardening etc will set it off. simply too afraid to move from my chair in case I set it off only to endure it day in, day out until the beast which has brought me to my knees and wonder if im living hell on this earth decides to stop.
It’s a horrendous pain, isn’t it? I’m sorry that you live with this.
Thank you, I have TN, and I feel like my dr. is insensitive to my pain, he is taking me pain medication away slowly but surely and I don’t know what to do!
Most GPs in my experience are morons when t comes to TN get specialist advice. I suffer too from TN but thankfully it is in a manageable phase at the moment take care
I’m 61 years old. I was self diagnosed 4 years ago with Trigeminal Neuralgia.
I best describe my pain as a red hot ice pick going up my nostril into my sinuses to my left eye. During this time I’m getting electrical shocks to my cheek and the corner of my mouth.
My pain is controlled with medications, but the fear of it coming back never leaves my thoughts.
I am 82 and was diagnosed about 6 months ago. The pain was centred on the middle strand, behind my right eye and cheek. Leter it shifted to the 1st strand across the top of my skull and down the side of the head. I could not wash or comb my hair without out starting off and attack. Blowing the right nostril also set off an attack. I can best describe the pain as a severe electrical impulse or even a branding iron (I imagine the at is the pain cows suffer when they are marked). My GP recommended I have physiotherapy. It reduced the frequency and pain. The physio released the mescles in my neck and shoulders. But a most amazing thing happened recently. I slid of the side of my bed and hurt my head on a sharp corner of my desk. I struggled for about half an hour to get up on my feet. The knock was quite sever and produced an egg on my head. And guess what! I have not had an episode to TN for three weeks now. My guess i that the combination of physio and the additional jolt to my neck have sent me temporarily into remission.
l am 65 years old, and was diagnosed a year ago by my dentist, after 2 expensive check ups. I had to switch doctors to get the help l needed. After trialing 7 different drugs, l have settled on one that helps, but the pain never completely stops, l just don’t have the very long agonizing attacks most of the time. 2 of the drugs gave me a severe rash covering most of my body, which was very traumatising to deal with on top of the Trigeminal pain.
l have the electric shocks mostly in both jaws and up in to my cheek. It feel like someone is drilling all my teeth at the same time. When the pain is bad, l can’t talk, it wracks my whole body, the only thing in my awareness is the pain. When l brush my teeth, l can also experience a burning shock from my front teeth and up in to my nose, as well as the jaw pain.
It is debilitating, it is exhausting, it is depressing, and most people do not understand how bad it really is. lt is a very lonely condition, it causes fear that is also overwhelming.
No=one should have to live in pain, but this condition is hard to get appropriate treatment for in the health system, so you just have to keep pushing and hope you get there.