Trigeminal neuralgia really is a pain in the face!!
Facial pain can be unbearably intense, taking control of nearly every aspect of daily life. It can make talking, eating, reading, or listening to music a struggle, and even simple pleasures – like enjoying a sunny afternoon or a brisk walk on a frosty morning – can become difficult. Most people don’t truly understand what it’s like to live with it, and those who do wouldn’t wish it on anyone.
It’s a Pain in the Face
I have lived with facial pain for years, and after countless visits to doctors and dentists, it was finally diagnosed as trigeminal neuralgia. I write about my experience often because I believe this condition needs far more awareness.
But trigeminal neuralgia is just one of many conditions that can cause facial pain. There are numerous others, and many are just as debilitating, profoundly affecting the lives of those who endure them.
Types of Facial Pain
Like trigeminal neuralgia, most facial pain conditions originate from the cranial nerves in the brain. There are twelve pairs of cranial nerves—one on each side of the head. Because they function independently rather than as a pair, pain from these nerves (neuralgia) most often affects only one side of the face, though in some cases both sides can be involved (bilateral). It’s also possible to experience more than one type of facial pain at the same time.
Facial pain can take many forms, and understanding the different conditions that cause it is an important step toward awareness and getting proper treatment. Here are a few of the most common causes:
Trigeminal Neuralgia (TN)
Pain can affect any or all three branches of the trigeminal nerve, including the forehead, cheek, nose, chin, teeth, gums, and tongue. It can feel like a sudden lightning bolt or electric shock (Type 1 or classic) or a constant, aching, burning, or stabbing pain (Type 2 or atypical).. Click here for more information about TN, including a diagram showing the affected areas.
Occipital Neuralgia (ON)
The occipital nerves run along the back of the head on both sides, stretching across the top and sometimes down onto the forehead. Pain from occipital neuralgia can feel electric shock-like, similar to trigeminal neuralgia, or manifest as pressure at the back of the eye.
Glossopharyngeal Neuralgia (GPN)
This pain can resemble trigeminal neuralgia but occurs in the back of the tongue, throat, ear, and neck.
Geniculate Neuralgia (GN)
Pain is deep in the ear and may be dull, burning, or feel like an ice pick.
Post-Herpetic Trigeminal Neuralgia (PHTN)
If you’ve had chickenpox, the virus can remain dormant in your nerves and later emerge as shingles. When shingles damage the trigeminal nerve, pain may persist even after the outbreak resolves. It can feel sharp, stabbing, burning, aching, or itchy.
Anaesthesia Dolorosa (AD)
Anaesthesia dolorosa is a type of painful numbness. While numbness typically implies a lack of sensation, in this case it causes pain—a burning, aching, heavy-pressure type often accompanied by pins and needles. It usually results from nerve injury or damage during surgery or medical treatment.
Persistent Idiopathic Facial Pain (PIFP)
Previously known as atypical facial pain, this condition is characterised by persistent facial pain that does not fit into any other specific category.
Facial Migraine
Most people are familiar with migraine headaches, but migraines can also affect the face. Facial migraines produce the same throbbing pain as typical migraines, but it is concentrated on one side of the face. Like other migraines, they can be severely debilitating.
Tempromandibular Joint Disorder (TMJD)
Although not a cranial nerve condition, TMJD can be extremely painful and debilitating. It affects the joint between the upper and lower jaw, causing pain in the jaw, ear, side of the head, and sometimes headaches, visual disturbances, or dizziness. TMJD is more common than cranial nerve facial pain, so many readers will recognise it.
Click here to find a more extensive list of facial pain conditions: the International Classification of Headache Disorders website.
All Conditions That Cause Pain in the Face Need Awareness
Many facial pain conditions share similar or overlapping symptoms, making an accurate diagnosis essential for effective treatment. This can be challenging, especially since even some medical professionals have limited awareness of these conditions, leading to confusion and delays in care.
This is why awareness is crucial.
During October, I will be sharing stories from facial pain sufferers on my blog and on my social media pages. Please help to spread awareness by sharing them.
Diagnosis Isn’t Simple
Very often there are no straightforward answers to facial pain. It can be difficult to diagnose and patients often see several doctors in their search for answers.
“Still Searching”
Pat C. is still trying to search for answers.
“I started getting facial pain when I was about 25. It was stabbing and burning and doctors didn’t know what it was. I Googled and read about TN and told my doctor. He said I was too young. But I see people on TN groups even younger than that! I’m now 32 and not much further forward. I’m still searching for answers. My pain is worse and it’s constant. I also get stabbing pain in my throat and my head. I’ve seen so many doctors and nobody has said what is causing this pain.”
Living With Pain in the Face is Disruptive
Facial pain conditions can be difficult to diagnose, challenging to treat, and profoundly hard to live with. They disrupt—and often upend—everyday life, leaving a lasting impact on those who suffer.
“I was Incapable of Taking Care of My Young Daughter”
Tammy Stoller’s pain started when she was in her thirties. At 42, she was diagnosed with trigeminal neuralgia, atypical trigeminal neuralgia and occipital neuralgia.
“My pain started out as what I thought was a really strange, bad headache. I didn’t tell anyone for several months because I was afraid it might be a tumor. It got so bad that I ended up in the ER. The doctor there immediately thought I had trigeminal neuralgia and prescribed gabapentin. I was in my second year of college at the time. This disease cost me the ability to finish my second year. The pain was so severe that I was incapable of taking care of my young daughter or be a wife. The MRI shows blood vessels touching the trigeminal nerve on both sides of my face. The left side is the worst, I am not a candidate for surgery. I am on several medications and I have also had several nerve blocks.”
“The Pain Has Changed Me”
Rhiann Leach was diagnosed with trigeminal neuralgia when she was 31.
“My first attack happened at 31 and 14 years later im still fighting! In the beginning, the pain would go away for months at a time and was well controlled by medication. A firm diagnosis was difficult at first because alongside facial pain I also get excruciating lightning bolts to the head! A definite compression isn’t clear on my MRIs.
The pain has changed me, it’s aged me, it’s taken away Me! The dose of medication I’m taking makes me drowsy, off-balance, slurring words and is way above the recommended dose. I have recently found a thread of hope in a new neurosurgeon that feels he can help me. He has already performed Pulse Radio-frequency to one part of the nerves and I’m going back again for further treatment. He also feels a blood vessel is so close to my nerve it is probably causing the symptoms. So I’m on a scary road of procedures and possibly one day Microvascular Decompression surgery but I am thankful that he feels he can help me. I’m thankful for a wonderful family and I’m thankful for the strength my faith brings me. I’m also immensely thankful for facial pain support groups and the reassurance and encouragement from my fellow warriors”
People Need Facial Pain Support Groups
Because most forms of facial pain are relatively rare, understanding and support can be limited. That’s why online communities are so important—providing connection and a sense of togetherness that helps sufferers feel far less alone in their pain.
“I Have Found Support Groups to Be Invaluable”
Jennifer was diagnosed with bilateral atypical TN and occipital neuralgia when she was 38 years old.
“My pain started without pain – I felt off colour and dizzy and thought it was a virus. Within weeks I felt like I had hot pins pricking my eye area on and off again for a few weeks and then the real pain started and didn’t stop. It got worse and spread.
Anticonvulsant meds worked for a week and then stopped, some procedures worked for a few days. One procedure worked for 6 weeks and it was bliss. After 3 years of pain from my forehead to my cheeks it started on my neck and the left side of my face. I’m in limbo and don’t know what to do or where to go next.
It impacts everything I do or want to do. I really have to weigh up my activities versus my pain levels or the impact on my pain levels. I’ve gone home early, turned down invitations and cancelled plans. I have pain all day every day and then get flares on top of that. Noise, bright lights, talking, wind and weather changes are huge triggers. Don’t get me started on the unending fatigue. I have found support groups to be invaluable for tips, advice and support because no one understands this unless they have it.
I wish my story was positive. I rejoice for the patients who get relief from meds or procedures and if I’m truly honest I’m jealous of them too. I wouldn’t wish this on my worst enemy.”
“It’s Important to Have People In Your Life Who Understand”
Leighann was 46 when she was diagnosed with trigeminal neuralgia.
“My pain started suddenly as it does for most. Stabbing pain in the right side of my face. And like most do, I started out with going to the dentist. After being told there was nothing wrong with my teeth by both the dentist and an endodontist, when the pain continued, I headed to a primary doctor who diagnosed me with TN. It took me three months. Another month to get an MRI and see the neurologist. I consider myself lucky on that part. My treatment started rather quickly.
And for me, the treatment has been almost as big an issue. Pain is horrible. Pain, with fatigue, hyper-somnia and cognitive issues due to the meds is depressing. I have found support groups to be helpful, being around others that are going through the same thing. It’s also important to have people in your life who understand when you’re having a bad day.”
We Need More Awareness About Facial Pain
Awareness of facial pain is vital. If you are wondering how you could help to spread awareness, please read the following post:
Simple Ways to Spread Awareness
Thank you so much for reading.
If this post resonated with you, I’d love to hear your thoughts in the comments.
And feel free to share it with your friends or support groups.
Take care,
Liz.
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Awareness is the first step toward understanding – and understanding can bring relief, connection, and hope
I’m glad you write about it, the more often the better, because I totally agree it needs more awareness. Years ago, I’d never heard of it. It’s only through my own journey and blogs like yours that I know about it and have some understanding, as someone who doesn’t have TN, of what life with it is like.
I do live with nerve pain and nerve damage, and it certainly opened my eyes just how intense that sort of pain and the problems caused can be. I also had no idea just how many nerves there are, the different types and how widespread the pain can be as a result of damage.
I love how you’ve covered the different types of neuralgia. Occipital Neuralgia made me double back and re-read because I have non-standard chronic migraines, the cause of which is still not confirmed. I imagine now that it’s perhaps inflammation related, which is causing the nerves to be compressed. I get that pressure at the back of the eye that you mention here and it’s utterly horrendous. I never thought of something like ON though. Hmm… I’m not sure how that would be diagnosed either and like you say, that part of things is often not easy or straightforward, so I’ll have to make a note to investigate.
You’ve done a fantastic job of raising awareness here, educating on the types of neuralgia, and bringing other patient stories together to give us a feel of what TN is like to live with.
Caz xx
Hi Caz, thank you, as always for reading and commenting.
Facial pain and headache/migraine type pain can be so confusing because symptoms are often far from straightforward. Many conditions have symptoms that overlap and the diagnosis procedures are often about ruling out other issues rather than specific tests. It’s confusing for patients and for doctors. That’s why I always tell people to write down every symptom and show a dcotor exactly where the pain is. So many people are probably misdiagnosed. (I possibly am too but my meds are helping reasonably well, so I won’t complain!)
When you suffer from chronic migraines (as you do and I did), very often, other issues are overlooked. The migraines get the blame for everything, but who knows, it might not be. If it turned out that you had occipital neuralgia, you could get a nerve block which might help. It might be worth looking at the ICHD website (https://ichd-3.org/). It lists all the types of headaches, facial pains and different types of migraines. Some conditions are treated in the same way, but others have different meds and treatments, so it might be worth a look to arm yourself with info.