Life is a nightmare for so many people living with trigeminal neuralgia. It’s a nightmare that continues day after day. There’s no escaping from it.
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Trigeminal Neuralgia Is a Living Nightmare
Many people who are living with trigeminal neuralgia compare it to a nightmare. Normally, a nightmare when you wake up. It’s over. But when you’re living with trigeminal neuralgia, the nightmare is never over. Even with medication, surgeries or other treatments, it’s never really over for many sufferers.
For some people, pain is never under control. And for some people, even though their pain is under control, they live with the very real fear of the pain returning.
Trigeminal neuralgia is difficult for other people to comprehend. This is why we need awareness so much. And one way to do that is to give sufferers a platform to tell their stories.
Trigeminal Neuralgia – “Electrocuting Nightmare Pain Living in My Face”
This is Julieann’s story. She lives in Hawaii and her nightmare with trigeminal neuralgia began when she was 49.
“My pain started in 2017 and is beyond anything comprehensible to anyone unless they have it. At first, I thought it was a dental problem. My dentist gave me a root canal, but it did not fix the pain.
The word PAIN, does not even describe this HORRIFIC, BEYOND ANGRY MONSTER, COMPLETELY ELECTROCUTING, NIGHTMARE PAIN, LIVING IN YOUR FACE!!!!!
It’s absolutely indescribable and beyond anyone’s imagination. It completely rips my heart out that children live with this also.
I have pain because a benign tumor presses on the trigeminal nerve. At first, I took carbamazepine, but had to stop due to the side effects. I was then put on Lyrica which helped some. I had gamma knife treatment for the tumor and was ok for 2 years until the pain returned because I tried to be active again and from stress. Lyrica stopped working so I now take it with oxcarbazepine. I’m not pain-free but so far, the attacks are tolerable if I stay mellow.
It changed my life completely because I was super active but now I’m just happy if I can go for a walk and be ok. It’s difficult to be in the wind. Speaking, eating and brushing my teeth are impossible at times. I have to sleep with my head elevated almost in a chair position – I have an adjustable bed to help with that. Stress, laughing too much or crying can mess me up. I can no longer work because I can’t handle stress, I can’t speak sometimes, and, becauseof my medication. It makes me so drowsy that I can’t think straight and I fall asleep for 4 hours a day because of it.”
“I Thought it Was Dental Related”
Diagnosed with trigeminal neuralgia at 51, Susan Holcolm’s pain started when she was in her early twenties.
“My pain started in my early twenties. Originally, I thought that it was dental related and have had several dental procedures that I am certain that I did not need.
I believe that my trigeminal neuralgia was caused by blunt force trauma since I had a bicycle accident when I was thirteen years old and knocked out my front teeth and fractured my mouth.
I go into remission periods but each time it comes back harder and stronger. The longest “flare” lasted six months. I am on gabapentin, muscle relaxers and pain medication. When I have an attack, right before it starts, I get a sensation like the shot you get at the dentist in the roof of your mouth. About 10 seconds later, the unbearable, unthinkable, relentless pain starts.
It feels like all of my teeth on the right side of my face are being pulled out while my gums are on fire. It feels like a steak knife is being driven in between each tooth – even ones that are not there anymore and my root canal teeth. The pain radiates up my jaw bone and it feels like a knitting needle is being stuck up my nose. All of the while, a hot poker is being stabbed into my ear and my eye feels like it is being pushed out from the inside. The pain runs through my forehead and a dagger is being pushed through the top of my head. The pressure and pain are so intense in my right temple that it feels like my head is going to explode.
This can last for hours. I pace the floors, take scalding hot baths, cry, rock, use microwavable heating pads that should melt the skin off my face.
Most of my “spells” occur at night and I stay exhausted. I work a full-time job and have to be extremely detailed oriented. It has impacted my life dramatically when I am in a flare. I pray daily for remission. I am not a candidate for surgery. It has impacted my relationship with my family and friends. My husband is wonderul and understanding, but I am sure that it is taking a toll on him too. Most of my friends and co workers do not understand.”
“The Pain is the Worst Thing I’ve Ever Felt”
Jennifer has atypical trigeminal neuralgia (type 2) which began when she was 42.
“I had shingles in my cranial nerve in 2019. In 2020 I started having a constant severe pain and pressure than went from my trigeminal nerve to my right ear, right eye, right eyebrow area and the top right side of my head. This disease is weird and the nerve sends pain to only certain areas and the pain is the worst thing I’ve ever felt.
Since I have type 2, my pain was constant. I have had maybe 12 steroid injections in the nerve. I finally saw a neurosurgeon in July of 2021 who diagnosed me and started me on medication on top of what I was already taking for pain. It took a few weeks to get dosing right but we are there.
I still have some flare-ups. I’m in one now. They are awful and I never know when they are going to pass or, for that matter, start. I’m a single mom and I have to keep going for my son. I have to work so I suck it up and deal with the pain. There are no down days. I wish there were but that’s the nature of single parenting with a chronic pain condition. This disease is awful.”
“I Felt Like My Eye Was Going to Pop Out of the Socket”
Vicki’s trigeminal neuralgia started when she was 33 years old. It took 5 years before she received a diagnosis.
“I suffered from trigeminal Neuralgia for five years. I was put on many medications. The pain was unbearable. It was on the right side of my face and I felt like my eye was going to pop out of the socket.
At first, they kept telling me it was my teeth. I had my first MVD surgery about 20 years ago. And I thank God because it worked. I may get slight pains here and there but it definitely worked. About three years ago it came back but on the left side. My tongue hurts so bad I couldn’t talk or eat and every time my tongue would hit my teeth it felt like lightning bolts were going through my mouth.
I couldn’t take it anymore and begged the doctor to do an MVD surgery. Almost 3 years ago, I had the surgery, but I still get pain here and there and a lot of my face is numb. I really can’t taste any food. But it’s a lot better than being in all that pain.”
“A Knife Was Slicing Through My Eye”
Rebecca has trigeminal neuralgia neuralgia. Her pain started when she was 47. After surgery for her TN, Rebecca developed anaesthesia dolorosa.
“I was diagnosed with TN fairly quickly after my first attack (in December of 2017) of feeling as if a knife was slicing through my L eye. I went through a year of trying multiple medications to try and control the pain and either I was allergic to the medication or it did not work.
Eventually, I was referred to a neurosurgeon and had a microvascular decompression and had to have 2 further surgeries that year with cerebrospinal fluid leaks. This surgery did not work and left the left side of my face painful and numb 24/7.
In 2020 I had a periorbital and occipital peripheral nerve stimulator placed which helps some. That, with the addition of some medication, makes the TN pain occur only a few times a day. I have constant burning pain but it is at a low level. I do not work currently and keep my activity low due to fatigue.”
“It’s a Daily Battle”
Mirna V. has trigeminal neuralgia and ocipital neuralgia. Her pain started when she was 48.
“It all started with a bad headache that felt like I was holding boiling water on the back of my head with extreme pressure, ear pain, the ringing in my ears got worst and a molar pain. I went to the dentist had the molar extracted but the pain didn’t stop – it spread to my whole upper teeth. Then after a few weeks, I felt electric jolts on the left side of my head and pain in all my upper front teeth and nose. The pain was unbearable. After a few trips to emergency, I was referred to a neurologist. I had a few MRIs, then the neurologist diagnosed me with Trigeminal Neuralgia and Occipital Neuralgia.
I have tried multiple medications. Nothing helped apart from a monthly shot of aimovig but it took a few months to work. I still get flare-ups and some symptoms never go away like the tooth pain and the pressure feeling in the back of my head.
It is a daily battle that has changed my quality of life because I’m already dealing with other health issues, but I’ll take it one day at a time.”
Hopefully the Nightmare Will End for People Living With Trigeminal Neuralgia
Awareness is vital. We all live in hope that, in time, it will bring better treatments. Then, hopefully, this nightmare can end for people living with trigeminal neuralgia.
The 7th of October is the International Trigeminal Neuralgia Awareness Day
Simple Ways to Spread Awareness
If you are living in a nightmare because of trigeminal neuralgia or another type of facial pain, you are not alone.
The Facial Pain Association are running an awareness campaign and would like people to share their facial pain stories using the following hashtags:
#FaceTodayTogether #MyTNStory #MyGNStory #MyGPNStory #MyONStory
So many people in so much pain.
Susan so vividly describes the types of pain she experiences really well – Feels like teeth being pulled out, gums on fire, steak knife driven between each tooth, pain radiating up jaw, knitting needles up the nose, hot poker stabled into ear, eye being pushed out from the inside, dagger through the top of the head… There’s no words for this, is there? It sounds utterly horrendous. I live with nerve damage pain and it’s not the easiest thing to describe accurately, then again neither is the inflammation in my face or the migraines in one eye. Having the examples here is a good way to get a feel for what the condition can be like for someone.
I had no idea you could get shingles in the cranial nerve. I’m a bit gobsmacked at that. My dad had shingles about two years ago and it was horrible for him. Never would have known it could affect the cranial nerve like Jennifer did. I’m glad she was diagnosed somewhat timely, at least not being passed around for 10yrs without a diagnosis or help. The experience really does vary so much for each person, and yet the ability for flare ups for those with chronic pain generally seems to be an issue for most.
I’d quite like to learn more about microvascular decompression, the treatment Vicki had. I’ll have to take a gander.
You’ve done brilliantly in collating these stories, Liz. It gives a deeper insight into the experience when it comes to types of pain themselves from TN, as well as how some people have developed it (like Julieann’s tumour) and how they manage it.
🙏💙
Caz xx
Thanks so much for commenting, Caz. You know extremely well (unfortunately) how debilitating nerve pain. Combined with your migraines and other health problems, your life is far from easy.
The chicken pox virus lies dormant in nerves and can erupt at any point as shingles. Normally it will erupt in one branch of nerves, like the trigeminal nerves or it might affect one half of the trunk of your body. Horrible thing. I hope your Dad didn’t suffer too badly from it.
The MVD surgery basically puts some teflon padding between a blood vessel and the nerve to relieve the pressure. That explanation probably over-simplifies it – it is major surgery. It can help a lot of people, but surgery isn’t the answer for everyone, unfortunately.
I suffered with the pain for 4 years, had MVD surgery, during the surgery my Vistabular nerve was damaged, now I live with Cronic Vertigo 24/7, I use a special walker to get around now, I guess I can say that dealing with vertigo is better than dealing with the TN pain.