The Moment I Discovered the Name of the 'Toothache' I Had for 20 Years


I had been living with severe teeth, face and head pain for years before getting a diagnosis of trigeminal neuralgia. At least 20 years. That sounds unrealistic, doesn’t it? How can someone live with such a painful condition for so long without getting a diagnosis? But that happens… not just with trigeminal neuralgia.

I can remember complaining to the dentist about it when I was in my early 20s. Agonizing teeth pain on the right side which came for a while, then left. Sometimes the top teeth, sometimes the bottom teeth. There was no cause found for it. I was told, “Sometimes people just get that and you need to put up with it.”

It was like the worse toothache ever. My face ached with it. It felt like someone was drilling through my teeth up to my eye. And I was told to put up with it.

I saw other dentists. They found no cause either. “Just take some painkillers,” I was told.

Painkillers never helped.

Never.

I was also always complaining to doctors about chronic headaches. Headaches which made my face hurt also on the right side. Painkillers never helped them either. A doctor suggested the headaches were due to the stress of living with chronic back pain due to my scoliosis.

As the years went on, all this pain became worse. I was living with a constant headache, face pain and toothache, all on the right side. Some days the pain was just there, like “background pain,” other days, the pain was unbearably severe and I just wanted to lie in my bed because every movement made it all worse.

I complained about it to every dentist and doctor I saw. I even told opticians!

Nobody was helping me.

Nobody.

“Take some painkillers,” was the standard answer.

When I was 44, I was going through a really bad spell. My teeth were in utter agony. It felt as though someone was pulling them out with a pair pliers. No anesthetic. Just twisting, turning and pulling my teeth with red hot pliers. The right hand side of my face hurt. Stabbing, aching, felt as though I’d been kicked by a horse. My cheekbone and all around my eye hurt. It felt as though there should be a bruise on my face. But there was none. Just all this unexplained pain.

I was at a loss as to what to do. Nothing I took helped. I had an appointment at my dentist and I told my husband that I wanted the dentist to extract my teeth because there must be a problem. My dentist had retired and a new young dentist had taken over the practice. She examined my mouth, did X-rays and said there was no dental problem. I waited for her to tell me to “just take painkillers.”

But she didn’t.

Instead she said, “Elizabeth, this pain you’re getting isn’t coming from your teeth. This is probably coming from a nerve in your face. You need to see a neurologist.”

I could have hugged her. She actually gave me a reason for this pain.

I couldn’t see a neurologist straight away obviously, but I had an appointment with a rheumatologist the following day for another problem I had. She immediately confirmed my dentist’s diagnosis, and she gave me a name for it – trigeminal neuralgia.

After 20 years or so of living with this constant and unexplained pain, I finally had a name for it. The good part was that she told me there were specific medications for conditions like this. Normal painkillers don’t often help nerve pain. After the previous 20 years, I could agree with that statement 100 percent. She told me that anticonvulsants and antidepressants are used to treat nerve pain. At last, I had a name for my pain and a prescription for correct medication after all those years.

Since then, I’ve seen a neurologist, pain clinic, had scans, been on many medications and unfortunately, I still have constant pain, but it is better controlled most of the time. I have learned a lot about trigeminal neuralgia and I’ve developed many coping skills for living with it. I’ve helped to run a support group and awareness page about TN for a few years  www.facebok.com/endTrigeminalNeuralgia.

I can only hope that awareness about the condition can maybe stop other people from spending so many years in pain without getting a correct diagnosis and treatment.

Classic trigeminal neuralgia (TN, TN1) can literally be like a bolt of lightning, like an electric shock on your face. It can come just out of the blue and can happen once, or repeatedly. Atypical trigeminal neuralgia (ATN,TN2) comes in many forms: throbbing, aching, burning, stabbing, piercing, etc. There are a few other variations of TN. They all can cause the most extreme facial pain.

The trigeminal nerve is one of the cranial nerves. We have one on both sides of our face. It has three branches :

  • V1 – The Ophthalmic Nerve (eye and forehead)
  • V2 – The Maxillary Nerve (cheekbone, nose and top teeth
  • V3 – The Mandibular Nerve (bottom teeth, chin and jaw)

One, two or all three of the branches can be affected. It normally affects one side, occasionally both sides and the pain is often unbearably and excruciatingly painful.

It affects mainly adults, but children can have it. too.

It is difficult to treat and there is no cure and is considered to be one of the worst types of pain anyone can have. People often feel there is no hope but there is. There are many medications, treatments and research is always being done.

So yes, there is hope.

There is always hope and people need to hold on to those words.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Anetlanda


Find this story helpful? Share it with someone you care about.


Related to Trigeminal Neuralgia

Sad girl sitting on the bed with her head down and covering her face with her hands

What I've Learned About Growth After Losing My Hair and So Much More

This morning as I was looking for some medical information I stumbled across a gallon ziplock bag I’d forgotten about in my bathroom closet. It’s marked as a biohazard, and it’s full of hair. My hair. From my head. I’m not sure why but they brought it out to the waiting room during surgery and gave it [...]
lonely woman with umbrella in lake,illustration

To Anyone Who Has a ‘Thing’ You Don't Like to Talk About

I have the best people. I have people that save me seats at church, places at yoga and cupcakes. I have people to work out with, not work at work with, talk Netflix with and not talk at all with. I have people to drink coffee with, to drink tea with and to drink wine [...]
Acid Doodle Background Pattern

Dear Trigeminal Neuralgia, the 'Suicide Disease,' I'm Not Giving Up

Dear Trigeminal Neuralgia, This time last‎ year I never even knew you existed. Now I know you are so very real. You’re “the worst pain known to mankind,” “the suicide disease.” You live up to these names. Some people with you find no relief and feel suicide is their only way out of your physical, emotional [...]
man and woman sipping cups of tea with straws

The Question You Should Ask Before Trying to Cheer Someone Up

The other day, I was feeling kind of meh. It wasn’t depressed exactly — just the opposite of confident. Sometimes, when I have several days in a row in which I get migraines and I don’t socialize, I can feel a sort of malaise that affects my confidence about work. When my husband came home, [...]