Is your TN pain really so invisible?

Trigeminal Neuralgia is often described as an invisible illness. Or an invisible disability. Or a hidden disability. Take your pick – there are several phrases used to describe the same issue – conditions that are not immediately or visibly apparent to onlookers, even doctors.

Trigeminal neuralgia is a condition caused by damage to the trigeminal nerve, inside your head and face. But how invisible is it really? I know my family can almost always tell when I’m having, or about to have, a flare. And I know from the comments of many people on online support groups that they also show a number of visible clues.

Not visible like a broken leg or arm wrapped in plaster, and not visible like paraplegia. Not visible in a way that would let a doctor diagnose pretty much just by looking, like chicken pox or measles. Still, there are certain minor, visible symptoms that often accompany the main, hidden symptoms of trigeminal neuralgia. These can be helpful for your family or friends to know about, as being aware of them will help them better recognise when you are in pain.

Some conditions, like diabetes, are invisible because there are no outwardly visible symptoms. Some conditions, like multiple sclerosis, are partially visible, partially invisible, because there are both outward and hidden symptoms.

Often, these invisible illnesses are chronic pain conditions. Living with a chronic pain condition is difficult enough, but when your symptoms are not immediately obvious to other people – like a broken leg or measles would be – it can be difficult for the people around you to understand that you are unwell.

When it comes to trigeminal neuralgia, I’d suggest it is both an invisible and visible condition. While the majority of symptoms – such as the electric shock pains of classic TN, or the burning ache of atypical TN – are not visible, there are other visible indicators many TN patients experience. Some subtle, some not so subtle! These visible clues are often autonomic symptoms. That is, involuntary, automatic body responses or actions.

Knowing your own visible symptoms can help you to explain your condition, and show how it affects you, to the people around you. Train them to be observant!

Visible autonomic symptoms of TN

Flushed cheek

Often trigeminal neuralgia patients report red, flushed skin, that is also sometimes hot to the touch, in the area of pain. While nobody can see the actual heat, a red flush on the skin, particularly if it is only on one side or in one small patch, is clearly a visible clue.

Red eye (conjunctival injection)

It’s not uncommon for trigeminal neuralgia patients (and cluster headache, which is a headache condition involving the trigeminal nerve) with pain in the upper branch of the trigeminal nerve to present with a red or bloodshot eye on the afflicted side of the face.

Excessive tearing (watery eyes)

If the pain is predominantly located in the upper branch of the trigeminal nerve, patients may experience tearing (watery eyes).

Ptosis

Ptosis is when the eyelid sags, giving a person a lopsided look. Again, if the affected area is the upper branch of the nerve, which runs across the upper jaw and into the forehead, ptosis may occur.

Twitching

Some trigeminal neuralgia patients devlop a temporary eyelid twitch immediately before or during a trigeminal neuralgia attack. Again, this occurs when the upper branch of the trigeminal nerve is affected.

Swelling

The painful area may be puffy and swollen.

Drooping

Sometimes a patient’s face will sag on the side of the pain, or the corner of the mouth may be pulled downwards.

Excessive salivation

Common when the lower branch of the trigeminal nerve is affected. While this is less of a visible symptom, a patient may find the saliva is so abundant that they drool and dribble, which an observant friend or family member can notice.

Numbness

Numbness may sound like something only the patient can be aware of because it is lack of sensation – but this numbness can manifest in a variety of physical clues.
You may not open your mouth as wide as usual.
Your tongue may be numb, making your speech sound a little slurred.
You may develop a lopsided smile if only one half of your face/mouth is moving properly.
These are subtle clues, but they are visible to people who know what to look out for.

Voice changes

My husband often comments that my voice sounds wispy and light just prior to an attack. Again, not a visible symptom, but it’s easy for people around you to listen out for any changes in your voice.

Remember, these visible clues are based on my personal experience and anecdotal evidence gathered from other trigeminal neuralgia patients. On their own, they are not reliable indicators of trigeminal neuralgia, as they are autonomic symptoms that also occur with a number of other conditions. Rather, they are useful pointers for friends and family of people diagnosed with trigeminal neuralgia to look out for, so they can learn to recognise when you might be in pain.

As these autonomic symptoms also appear with other conditions, if you develop them it is important to discuss them with a doctor.

Research on autonomic symptoms with TN

When I first started writing this post, I was writing from my own experience, and from what I’ve heard other trigeminal neuralgia patients say about their experiences. Most medical articles describing trigeminal neuralgia focus on the main diagnostic symptoms of the pain, and the nature, duration and triggers of the pain. Autonomic symptoms are often not mentioned at all. But in researching this post, I found an excellent article about trigeminal neuralgia which describes research on autonomic symptoms and trigeminal neuralgia.

Do you experience any of these autonomic symptoms?
It’s worth keeping a pain diary for a while and noting any of them down that you notice happening to you. This will give you a good list of symptoms to share with the people around you, so it will be easier for them to know when you are experiencing an attack. It will also help you to give your doctor a clearer, more comprehensive picture of your experience with trigeminal neuralgia.