This is Why Trigeminal Neuralgia Needs Awareness

In my last post, I tried to explain what Trigeminal Neuralgia feels like through the words of other sufferers and a short video which I made. The condition is not well understood by non-sufferers. But it is also not well understood by some medical professionals. This, more than anything, is why trigeminal neuralgia needs awareness.

Trigeminal Neuralgia Awareness is needed. TN Teal awareness ribbon in picture.

It’s Often Difficult to Diagnose Trigeminal Neuralgia

My own facial pain went undiagnosed for over twenty years. That’s a long time to wait for a diagnosis but my story is not unique. I have read so many similar stories from TN sufferers who filled in my questionnaire.

#TNvoices

Trigeminal neuralgia. TNvoices. Facial pain went undiagnosed.

Anna – 20 years for a diagnosis
“My pain first started when I was 15, but it took 20 years to get a diagnosis. I have a constant feeling of electric insects crawling on my skin paired with stabs from an icepick.”

Paula Williams – 20 years for a diagnosis
“When I was 30 years old, my trigeminal neuralgia started but I wasn’t diagnosed until twenty years later. TN is like the worst toothache in the world and electric shocks that literally make you jump.”

TN difficult to diagnose. Facial pain like icepick being hammered into face. #TNvoices

Why is Trigeminal Neuralgia so Difficult to Diagnose?

Trigeminal neuralgia is a rare condition which doctors study very briefly during their training. That’s understandable as they have an enormous number of medical conditions to learn about.

During their careers, some doctors rarely see a TN patient and some might see none at all. When they do see a patient with facial pain, they don’t automatically think of TN. They might think that the pain is caused by something more obvious like sinusitis, toothache, TMJD or a form of migraine. There are several equally painful conditions affecting the face. It can become confusing.

If the patient has electric shock type pain on one side of their face, some doctors do recognise it as classic trigeminal neuralgia. But it becomes more confusing if the patient is considered too young or if other symptoms, such as constant pain or pain on both sides of the face are thrown into the mix. (Trigeminal neuralgia can affect people of any age, can be constant and can affect both sides of the face.)

Woman holding face in severe pain from trigeminal neuralgia. Writing says, Trigeminal neuralgia is a rare condition, difficult to diagnose and difficult to treat.

There are no Diagnostic Tests for Trigeminal Neuralgia

Even when they do consider TN as a diagnosis, there are no diagnostic tests. There are no blood tests or scans to confirm a diagnosis. An MRI scan is normally done, but that is mainly to rule out other conditions.

Diagnosis is based mainly on the patient’s description of the pain. (This blog post might help you explain your pain to your doctor and hopefully help them reach a diagnosis faster.)

Some People Have Been Diagnosed Quickly

On a positive note, some patients have been diagnosed quickly.

TN diagnosis. #TNvoices

KZR suffers from Atypical Trigeminal Neuralgia on the left side of the face and was diagnosed within three days.
“My pain is constant and burning with occasional flares. The pain is centred around my cheek, temple and leads into my nasal area. During flares, my pain also occurs around my eye area, upper lip and lower lip. Very rarely is my pain less than 6/10. I don’t remember the last time I had a pain free day.

I was lucky. On the third day of suffering from pain, I was diagnosed in my local ER and sent to see a neurologist.”

Getting a Correct Diagnosis is Crucial

Patients need a correct diagnosis in order to get the correct treatment.
KZR really was lucky to be diagnosed within three days. That is fairly rare.

Trigeminal neuralgia is not easy to treat, but anticonvulsant and/or antidepressant medications can help many sufferers. But people are sometimes prescribed standard pain meds or told to take over the counter medication like paracetamol or aspirin.

#TNvoises Doctor told patient to stop taking anticonvulsant and take paracetamol instead.

Paracetamol will not help trigeminal neuralgia. But more worryingly, the doctor actually wanted to stop this lady’s prescription for her anticonvulsant meds. Stopping anticonvulsants abruptly is dangerous. (Lyn knew that this doctor was giving bad advice, but not everyone would.)

Support for Trigeminal Neuralgia Sufferers

After a correct diagnosis is made, you would think that the correct treatment would be given. You’d also think that the doctor would be supportive. Some people are lucky and have excellent doctors who go the extra mile. But that doesn’t happen in all cases.

Some sufferers were diagnosed then told to research the condition on the internet. We do have information at our fingertips nowadays but it can be frightening and it’s not always accurate. Doctors should be taking the time to inform and support their patients.

Mel was diagnosed with trigeminal neuralgia two years ago
“I had bolts of lightning going through my head and cheek. At an emergency appointment, my GP prescribed cocodamol painkillers which didn’t help. I returned and asked for a brain scan. He sent me to a neurologist who diagnosed TN. But he didn’t explain anything. When I saw my GP again, he said he didn’t know much about it, so I should just google it.”

Emergency Treatment for Trigeminal Neuralgia

In an older post, I wrote that trigeminal neuralgia can become so out of control that normal medication doesn’t help. People sometimes need to go to a hospital for emergency treatment but they rarely get the help they need.

IV Meds Can Help During a TN Emergency

There are IV medications which CAN help some people in an emergency situation. Click this link to learn more: Emergency treatment for trigeminal neuralgia

Trigeminal neuralgia awareness is needed. Trigeminal neuralgia emergency treatment. #TNvoices

Cathy Lawling has lived with TN for 22 years since she was 40.
When I had to go to the Emergency Department, I was treated as though I was searching for drugs.

Sam went to the ER a few years ago and sees no point in going back.
“They told me I was wasting their time. My pain was off the charts. I don’t think they knew what TN was. They told me to try tylenol. (For this!) Eventually they gave me morphine and said they could do no more for me. The morphine didn’t even stop the pain.”

ER was unhelpful for TN.

Some Emergency Departments do Help TN Sufferers

Ending on a positive note. Some emergency departments do help.

The emergency department helped Jessica Mortensen
“They’ve asked what has helped me previously and contacted my neurosurgeon for direction.”

And thankfully, some of them listen to patients who have learned about the correct treatments.

#TNvoices Emergency medication for TN. Emergency TN protocol.

Awareness Can Bring Understanding

Awareness about trigeminal neuralgia is needed because it can bring understanding. Understanding can bring hope.

Naturally, sufferers hope for a cure for trigeminal neuralgia. Who wouldn’t? But at present, people aren’t being diagnosed correctly or quickly enough and many people are not even receiving treatment which is currently available.

There are many good doctors and many TN patients are receiving good care. But too many are not. The medical profession needs more education about this cruel condition. Sufferers need more help. They need a faster diagnosis and they need to be prescribed the correct medication.

Trigeminal Neuralgia Awareness Day is on the 7th of October. But that is just one day – trigeminal neuralgia needs awareness every day. Please share my post so that TN Voices can be heard loud and clear.

Thank you again to all the contributors. I appreciate your input. Please check out my Pinterest, Twitter and Facebook pages for more #TNvoices posters.

Have you struggled to get a diagnosis or the correct medication? Please let me know in the comments section below.

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18 thoughts on “This is Why Trigeminal Neuralgia Needs Awareness

  1. Kelly Martin

    Trigeminal neuralgia definitely needs more awareness. I only heard about it from your blog recently. It’s such a terrible condition.

  2. I feel sad for those who have it and pray that they feel better. I’ve learned about trigeminal neuralgia recently and people should know more about this. it’s great that you are raising awareness about this.

  3. I read your former post, and all this information is actually helping me soo much! I’m no doctor but my grandmother has suffered with that kind of pain an no doctors find an answer and that’s something that haunted her life since her 20’s maybe it’s time for us to look further into it. Thanks for sharing!

  4. Lindsay Rae

    This is a great post. I personally have learned so much about TN from reading posts like this one in my blogging communities. That is one of the reasons I so appreciate the online community – it is such a useful tool to spread awareness for such important things like this. Keep doing what you are doing, YOU are making a difference!

  5. I have a friend that suffers from TN, but I never knew how widespread the condition was. Thank you for spreading the word and making the public aware

  6. Live Well Choose Joy

    I have only just been learning about this and it is so terrible that it has taken so long for some to get diagnosed. Thanks for sharing this!

  7. June Briggs

    I personally have suffered fromTN since my early 20’s. I used to sit with a pkt of frozen peas on my face to numb the shoting pain on the left side of my face. No diagnosis or treatment. Basic paracetamol and ibuprofen slightly helped. But 2015 I suffered a brain aneurysm leading to a left sided stroke. While in hospital I was seen by a neurologist whom prescribed Topiramate to hopefully prevent TN. I have had a few episodes during these past 4 years but NOW I have more control. Thank you forraising awareness for TN.J Briggs Ballarat Victoria.

  8. This is the 2nd post I read about Trigeminal Neuralgia and before that, I had no idea about this condition.

    Would love to help share about this condition in order to help spread awareness. I guess being more aware will help patients and doctors have the proper diagnosis faster. Twenty years of pain is no joke.

  9. Jenny A.

    Thanks for writing about TN. My TN started 8 years ago on my husband’s 50th birthday. I felt a bolt of lightning from nowhere. I didn’t know what hit me. We thought I had a brain aneurysm. Tegretol is keeping it under control but I live in fear of it getting bad again.

  10. Jess

    I have been diagnosed with TN. I am too terrified of the medication my doctor suggested. It was said that I would have to alert every medical professional including pharmacists of the m⁷edication for it would interact with MANY other medications, both otc and prescribed.

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