Trigeminal Neuralgia: Myths and Misunderstandings

7th October is an important day for people with Trigeminal Neuralgia. It is the international awareness day. People will be wearing teal t-shirts, getting buildings to glam up with teal lights, sharing facebook pics of teal ribbons and TN facts. This year I’ve decided to unpick some of the myths that exist about the condition.

MYTH – TN only occurs on one side

Well, no. It is more common on one side of the face, but bilateral trigeminal neuralgia does occur. The pain is often less severe on the second side, and rarely happens simultaneously. It can’t cross from one side of the face to the other, because the nerve doesn’t.

MYTH – Removing teeth stops TN

The pain of trigeminal neuralgia is sometimes felt in the teeth because the nerve goes into the teeth (the three branches of the trigeminal nerve separate into many tiny twigs). In the vast majority of cases, removing teeth won’t stop nerve pain.

MYTH – TN is always caused by compressions

Sometimes it is. But not always. There are many other causes, such as:

Herpes zoster virus
This is the virus that causes chicken pox and lies dormant in the system long after a patient recovers from chicken pox. Sometimes later in adult it reappears as shingles, which can also cause TN.
Other Diseases
Trigeminal Neuralgia is a secondary condition to a number of other diseases, such as Sjögren’s Syndrome, Multiple Sclerosis, Lyme disease, and strokes.
Physical Trauma
Head injuries can cause TN

MYTH – My face pain must be TN

Not necessarily. There are twelve pairs of nerves in the head, and any of them can malfunction, causing neuralgia. There are also other conditions, such as cluster headache, which have similar symptoms. To make a diagnosis, a doctor/neurologist needs to consider all options. A patient can help by keeping a comprehensive pain diary, recording symptoms, triggers and other details.

MYTH – Nerve pain elsewhere in my body must be TN

No. Trigeminal Neuralgia only affects the trigeminal nerve, which is only in the head. If you are having other pain elsewhere, talk to your doctor about it.

MYTH – Only adults over 60 get TN

Not true. Trigeminal neuralgia is more common in older people, but it can and does strike at any age. I’ve had it since I was about seven years old. Babies have it, teenagers, thirty year olds.

MYTH – Only women get TN

Nope – TN doesn’t discriminate. Men get it too, though in fewer numbers.

MYTH – Children can’t get TN

They can and do, although it is much rarer than in adults

MYTH – 50% of people with TN commit suicide

There are so many versions of this myth floating around on the internet – 25% of people commit suicide within a year of developing TN, or 50% within three years, or 26% overall. None of them are true. People with any chronic illness/ chronic pain do have an increased risk of suicide, and many people with chronic illness/pain conditions do experience depression/suicidal thoughts. If this is you, don’t suffer them in silence. Ask your doctor for help, talk to friends and family, join a facebook support group, ring a telephone helpline.

MYTH – There is no cure for TN

I guess this depends on your definition of cure. If you mean that a particular surgical procedure or medicinal treatment will stop TN symptoms in their tracks for everyone, then no, there is no cure. But there are a range of meds and surgical procedures available to treat TN and many people do go on to live life entirely symptom-free, or only experience occasional flare-ups.

MYTH – People can only understand TN if they have it themselves

I don’t think so. Empathy, compassion and knowledge is all people need to be able to understand what someone else is experiencing. And in the end, isn’t that what awareness day is all about – sharing information and knowledge so that people can understand?

If you know anyone who needs to know more about TN, please share this post with them.