Trigeminal Neuralgia are two words that most people in the world have never heard. Two words that most people will never say. Even doctors.
This creates a particular difficulty for people when they are diagnosed with the condition. What the eff even is trigeminal neuralgia? We might want doctors to have all the answers, but because it is such a rare condition, patients often have difficulty finding a doctor who knows much about it at all. It can be tricky for doctors to diagnose exactly. There is no simple method, like a blood test, to diagnose it.
Trigeminal neuralgia is a neurological condition, but often it’s difficult to find even a neurologist who knows much about it. Neurologists can have years of experience and still never come across a patient with trigeminal neuralgia.
All this means that many trigeminal neuralgia patients are left having to research the condition themselves, and develop their own body of knowledge to help them manage the condition. The difficulty with this is that the internet is teeming with articles and blogs and reports on pretty much every subject under the sun. But not all articles are created equal! Not all articles are written from knowledge, or experience, or even with good intentions. Wading through all this information is often exhausting, baffling and time-consuming.
It also means that patients are often left wondering if particular symptoms are part of trigeminal neuralgia, or something else. It’s not unusual for trigeminal neuralgia to be a secondary condition, that is, caused by another condition, which makes it tricky to identify which symptoms are caused by what disease.
The last thing most people want to do when they are dealing with a life-changing diagnosis, and one that leaves them in extreme pain and exhaustion much of the time, is spend hours on google trying to figure out good information from bad.
So, what IS trigeminal neuralgia, and what is it NOT?
Neuro means relating to nerves and algia means pain. Trigeminal neuralgia is a pain condition of the trigeminal nerve
There are twelve pairs of major nerves in your head, exiting from the top of the spinal cord and feeding different areas of your face/head. The trigeminal nerve is the fifth pair of nerves. On each side of your face, it runs up the neck to a spot just near the ear and splits into three separate branches. These three branches are responsible for sensation and movement in your face, carrying messages to your brain. If the trigeminal nerve doesn’t work properly, it carries the wrong messages to the brain, interpreting the slightest stimulation – touch, taste, smell, movement – as pain.
Where does the trigeminal nerve go?
Once it splits into the three branches, the top branch (opthalmic branch) goes up the side of the face and across the forehead/eyebrow area.
The middle branch (maxillary branch) goes along the upper jaw and into the teeth and nose.
The lower branch (mandibular branch) goes along the lower jaw into the teeth and chin area.
Another branch goes vertically goes a short way up the side of the head from the ear.
Trigeminal neuralgia causes pain in any of the areas the nerve supplies, such as eye, forehead, cheek, nose, jaw, teeth, gums, and lips.
What does the pain feel like?
There are generally considered to be two types of trigeminal neuralgia.
Type 1, or Classic, is characterised by lancinating, stabbing pains in the affected area. These are often described as being like suffering an intense electric shock, or being hit by lightning. The pain is sharp and fierce, and tends to come and go in brief episodes lasting seconds to minutes at a time.
Type 2, or atypical, is characterised by burning and tingling in the affected area. The pain is dull and aching, and tends to last for hours at a time.
So far, so simple. So what confuses the picture?
Well, for a start, 11 other facial nerves. All of which can also cause neuralgia or other conditions.
Plus a myriad of other facial pain conditions with many overlapping symptoms.
My pain is in my jaw, tongue and throat. Is this trigeminal neuralgia?
Neuralgia in the throat is more likely to be caused by glossopharyngeal neuralgia.
The glossopharyngeal nerve, serves the tongue, tonsils and throat, ending in the pharynx.
Pain with glossopharyngeal neuralgia is often triggered by eating, swallowing, coughing, yawning – anything that involves jaw (mandibular) action.
Because the glossopharyngeal nerve also connects with the vagus nerve pain can also occur in the chest and arm. The vagus nerve, the tenth cranial nerve, runs from the brain to organs in the neck chest and abdomen.
Causes of glossopharyngeal neuralgia are similar as the causes of trigeminal neuralgia – damage or compressions.
Treatment for glossopharyngeal neuralgia is the same as for trigeminal neuralgia.
My pain is aways centred deep inside my ear. Is this trigeminal neuralgia?
Maybe. Trigeminal neuralgia can cause pain in the ear. So can glossopharyngeal neuralgia.
Or it could be geniculate neuralgia. Geniculate neuralgia occurs when a branch of the facial nerve, the seventh cranial nerve, is damaged or compressed. Again, treatments are the same as for trigeminal neuralgia.
Always get tested by the doctor for an ear infection, as this could be a simple and easily fixed reason for the pain.
I have nerve pain and tingling in my hands and feet. Is this part of trigeminal neuralgia?
No. Trigeminal neuralgia only cuses pain in the face and head.
Symptoms of nerve pain elsewhere could indicate another underlying condition. Diabetes, for instance, causes nerve damage.
Also, some medications have neuropathy in hands and feet as a side effect.
If you are experiencing new symptoms, or symptoms unexplained by trigeminal neuralgia or any other condition you have, see a doctor for advice and diagnosis.
My pain has always been one specific area of my face but now I am feeling pain in different parts. Is that still trigeminal neuralgia?
Probably. Pain occurs anywhere on the trigeminal nerve and is known to shift around. But trigeminal neuralgia is not the only condition that causes face pain, so always discuss new symptoms with your doctor.
My teeth hurt all the time and I want to have them taken out but my dentist says they are fine. Is this trigeminal neuralgia?
Probably. It could be a problem with your teeth the dentist has missed, so it’s always worth getting a second opinion. But it’s more likely to be trigeminal neuralgia. When the nerve separates into the three branches, each of those branches separate into smaller and smaller branches, like twigs on a tree. Some of those twigs are responsible for sensation in our gums and teeth. If it is trigeminal neuralgia and you have your teeth removed, you will still feel the pain because the teeth aren’t the problem, the nerve is.
I get nerve pain in my scalp, the back of my head and down my neck. Is this trigeminal neuralgia?
No. The trigeminal nerve does have a small branch running up the side of your head, but not at the back. These three symptoms together suggest occipital neuralgia.
The occipital nerves come out between bones in the upper spine and run through your neck, back of head and scalp. Again, there are two, one each side, and they break into smaller branches. Pain can occur anywhere along the branches of the nerve. Damage or compressions cause occipital neuralgia. Treatments are the same.
Many of these neuralgias have overlapping symptoms because the nerves go to similar parts of the head/face. There are also different conditions, such as tempero-mandibular jaw disorder, or certain headache disorders, that also present with very similar symptoms to trigeminal and other neuralgias.
Trigeminal neuralgia is a complex condition but the more you know about what it is, and what it isn’t, the simpler it becomes to get the proper treatment for all your symptoms.
Such an informative and useful post. I hope I never suffer from any of these.
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I wish nobody did!
very informative, I read it all. there are so many various conditions I hope to never experience in my life
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I hope so too!
I have learned so much from this post, Trish! I’ve often wondered if I have some TN issues, but it definitely falls into the TMJ category. Which certainly isn’t fun either. I wouldn’t wish either on anyone. I appreciate learning about TN though, because there is so little information about it and what actually happens. I think it is easy to simply think “face pain” when we hear about TN.
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TMJ is a nasty condition too – I find always resting the tip of my tongue lightly behind my top front teeth keeps my jaw in the right place. Hope it helps you.
Helpful post, Trish. There’s often confusion about the various types of facial pain.
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It’s important to get clarity on which is which!