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.

MYTHTN 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.

  16 comments for “Trigeminal Neuralgia: Myths and Misunderstandings

  1. The Prepping Wife
    14/10/2020 at 12:34 am

    I was able to share your site and Liz’s with a friend who has TN and recently started posting about it on social media. Previously she had kept this quiet. I can partially understand it because I have TMJ issues, migraines, and a couple other issues associated with my face and head. But it isn’t TN. The rest is me learning so much from you and your experiences. I am glad you’ve given a voice to TN and those who suffer from it.

    Liked by 1 person

    • Trish
      14/10/2020 at 2:00 pm

      Thanks for sharing it, Erica. Sorry to hear about your friend, and hope she’s got it under control. Does she know about our facebook group too? End TN is the group.

      Like

  2. 13/10/2020 at 10:39 pm

    Thanks for dispelling some of the myths on TN from your perspective! That’s always necessary.

    Liked by 1 person

    • Trish
      14/10/2020 at 1:58 pm

      It certainly is!

      Like

  3. Luna S
    13/10/2020 at 5:04 am

    I don’t think I’ve ever heard of this, It sounds painful and unpleasant but it is nice to know more about it.

    Liked by 1 person

    • Trish
      13/10/2020 at 11:10 am

      Very painful and unpleasant – even with the meds sometimes!

      Like

  4. 12/10/2020 at 10:39 pm

    I have never heard of TN before and I am glad that the first article I read about it is about the myths and misunderstandings and to have that cleared up right at the start. Thank you for clarifying. I am so glad that there are medicines to control this illness to live a symptom-free life or at least with only occasional flare-ups.

    Liked by 1 person

    • Trish
      13/10/2020 at 11:09 am

      It’s a hard disease to live with – even harder with wrong information!

      Like

  5. Life With Sonia
    12/10/2020 at 12:57 am

    Well, this was new to me. Great information too. Thanks for sharing

    Liked by 1 person

    • Trish
      12/10/2020 at 11:45 am

      Not many people have heard of it – even in the medical field!

      Like

  6. 11/10/2020 at 7:54 am

    Thank you for sharing this information on trigeminal neuralgia. I had heard about it, but I did not know much about this. Seeing some of these myths, and misunderstandings really was eye opening.

    Liked by 1 person

    • Trish
      11/10/2020 at 2:40 pm

      thank you

      Like

  7. 11/10/2020 at 7:02 am

    Wow, I have never heard of this before. I’m glad I got to learn about it. Thank you!

    Liked by 1 person

    • Trish
      11/10/2020 at 2:40 pm

      you’re welcome!

      Liked by 1 person

  8. Peter Gough
    10/10/2020 at 2:37 pm

    TN can also be caused by a tumor (eg a meningioma) compressing the nerve and its removal can cure the condition, but not always.

    Liked by 1 person

    • Trish
      10/10/2020 at 7:48 pm

      Of course, tumours can be another culprit. One reason it’s so important people get an MRI as part of the diagnosis process.

      Like

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