Trigeminal Neuralgia Facts ~ TN Awareness

Since Trigeminal Neuralgia Awareness Day takes place on the 7th of October, I thought I would share some important facts about this painful condition. It’s not just painful – it’s also cruel and misunderstood. And even though I’ve talked about most of these facts before, they’re worth repeating because trigeminal neuralgia needs more awareness.

What is Trigeminal Neuralgia?

Sometimes, the trigeminal nerve misfires, sending pain signals to the brain. This condition is called trigeminal neuralgia.

The trigeminal nerve is one of twelve pairs of cranial nerves, and we have one on each side of the face. It starts near the ear and then branches into three main sections that carry sensation across different parts of the face.

• V1 – the ophthalmic nerve: The top branch covers the eye, forehead area and goes from the bridge to the tip of the nose.
• V2 – the maxillary nerve: The middle branch affects the upper jaw, cheek, side of nose, top lip, palate, part of tongue, top teeth and gums.
• V3 – the mandibular nerve: covers the chin and lower jaw area as well as part of the ear, the bottom lip, bottom teeth, gums and part of the tongue.

Click here to see more articles about trigeminal neuralgia

Trigeminal Neuralgia Facts

Fact Number 1 – Trigeminal Neuralgia Can Affect Either or Both Sides

The pain typically only affects one side of the face or head, but it can also affect both sides (bilateral TN).

It can affect either one, two or all three branches, and bilateral trigeminal neuralgia can affect any or all six branches.

Fact Number 2 – Anyone Can Develop Trigeminal Neuralgia?

The simple answer: anyone.

While some books, websites, and even some doctors suggest that trigeminal neuralgia only occurs in people over 50, it can actually affect anyone, no matter their age – even young children. However, the chances of developing TN as we get older do increase, and women are more likely to experience it than men.

Fact Number 3 – The Pain is Shocking…Literally

There are two types of trigeminal neuralgia, each as bad as the other. Unfortunately, many people suffer from both types.

Typical Trigeminal Neuralgia, Type 1

The pain can come out of the blue and feel like a bolt of lightning has hit your face, or it can feel as though your face has had an electric shock. This can happen repeatedly, leaving the sufferer living in fear of the next attack.

Atypical Trigeminal Neuralgia, Type 2

Probably, the worst aspect of atypical trigeminal neuralgia is that the pain tends to be there all the time. It might be there, hovering in the background at a fairly low or moderate level at times, but it can also be off the scale, leaving the sufferer in agonising pain daily.

People often describe Atypical TN (Type 2) pain as:

• shocking
• stabbing
• sharp
• aching
• burning
• throbbing
• tingling
• piercing
• stinging
• crushing

A few years ago, I made some videos to demonstrate what trigeminal neuralgia feels like. They might help people to understand what the pain feels like.

Fact Number 4 – Trigeminal Neuralgia Triggers

Try to imagine, just for a second, not being able to clean your teeth or brush your hair – because doing so would make you scream out in pain. Imagine taking a sip of tea and feeling a bolt of lightning attack your face.

That’s reality for countless people living with trigeminal neuralgia.

Triggers that can set off or worsen this condition can vary from person to person. Some might be avoidable, but many simply aren’t.

Talking, smiling, laughing, and frowning can set the pain off. Everyday actions like personal care, eating, and drinking can be triggers. The weather, certain foods, smells and sounds can also provoke the pain. And, some of the biggest triggers can be related to our own emotions like stress, anxiety or grief.

Click here to learn more about triggers

Fact Number 5 – Causes of Trigeminal Neuralgia

In most cases, the pain is caused by a blood vessel pressing on the trigeminal nerve. This is the most common cause, especially for typical (type 1) TN. Other causes include tumours, cysts or injuries which can put pressure on or damage the nerve. And some illnesses, for example, multiple sclerosis, can also cause trigeminal neuralgia.

Our nerves are protected by a covering called the myelin sheath. This protective layer can become damaged or worn away, leaving the nerve exposed. When this happens, the nerve may send pain signals to the brain, causing the intense pain associated with trigeminal neuralgia.

However, very often, there is no known cause.

Fact Number 6 – There’s a Shocking Lack of Understanding

The pain can literally feel like an electric shock – sudden, sharp and overwhelming. But it’s not just the pain that’s shocking. There is also a shocking lack of understanding about the condition, even among medical professionals.

Most people have never heard of trigeminal neuralgia – that’s understandable since it’s a fairly rare condition. However, you would expect doctors to recognise and treat it correctly, wouldn’t you? But, very often, that’s not the case.

Many people resort to turning to Dr Google for help because they dealing with relentless facial pain that is not recognised or correctly diagnosed.

A Diagnosis Leads to a Treatment Plan

When a patient receives a diagnosis, they can get treatment that will hopefully help. But too many people struggle to get that crucial diagnosis, which means they don’t receive the correct treatment. The longer this goes on, the more soul-destroying it becomes.

There are emergency protocols for trigeminal neuralgia – I’ve discussed them in my post How to Get Help in a Trigeminal Neuralgia Emergency. Yet, when people go to hospital with pain that’s completely out of control, doctors seldom follow those protocols. Patients are frequently sent home without receiving any meaningful treatment – and far too often, they are made to feel as though they are wasting everyone’s time. Or even worse, that they are seeking drugs.

One of the most shocking facts about trigeminal neuralgia is that it is considered to be one of the most painful conditions that exists, so surely doctors should be more aware of it and be better equipped to recognise and treat it correctly.

Making doctors listen and understand can be difficult.
You might find this post helpful.

Facts About Trigeminal Neuralgia – Everyone Needs Hope

Trigeminal neuralgia can feel overwhelming – physically, emotionally and mentally. The future might look and feel bleak.

If you are living with trigeminal neuralgia, remember that you’re not alone. There are support networks, advocacy groups, and organisations that can understand and help.

There is hope. Although currently, there’s no cure, there are treatments available. Everyone responds differently, so it can take time to find the best approach. Hopefully, you can find the best treatment to manage your pain and improve your quality of life.

Some Useful Links & Dates for Your Diary

Facial Pain Association
Young Patient’s Committee (A branch of the FPA specifically for TN sufferers under the age of 40)
TNA UK
End Trigeminal Neuralgia Awareness and Information
End TN Support Group

Facial Pain Awareness Month – October
Trigeminal Neuralgia Awareness Day – 7th of October
Geniculate Neuralgia Awareness Day – 10th of October
Glossopharyngeal Neuralgia Awareness Day – 14th of October
Occipital Neuralgia Awareness Day – 25th of October

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Take care,
Liz.

Everyone needs hope for a better future – and with more awareness,
that hope can become stronger.