Trigeminal neuralgia is a painful chronic condition that affects fewer than 200,000 people per year. While this qualifies the condition as a rare disease, those who suffer with it know that the pain it brings is anything but rare. Patients can suffer regular or even constant pain that can range from frustrating to life-altering.
Because trigeminal neuralgia is considered relatively rare, many people have never even heard of the condition. I was one of those people – until I developed the disease myself. Now, I am on a mission to share important information about what trigeminal neuralgia is, what it feels like, and what can be done about it.
What Causes Trigeminal Neuralgia?
Trigeminal neuralgia is named for the trigeminal nerve. The Cleveland Clinic describes this as a nerve that is attached to the brain and allows humans to feel sensations in the face and head. The nerve branches into three parts, controlling these sensations in three different sections of the face. These branches include:
- Ophthalmic branch – This nerve branch includes the forehead, temples, and area around the eyes.
- Maxillary branch – The second nerve branch is responsible for sensations in the middle of the face, including your cheeks, nose, upper lip, and the top of your mouth.
- Mandibular branch – The last nerve branch which is responsible for the feeling in the bottom of your face, including your lower lip, chin, and jaw.
While the actual cause of trigeminal neuralgia varies from person to person and is still not widely understood, it generally involves a problem with the main trigeminal nerve or one or more of these three branches. This could be damage to the nerve, a tumor pressing against it, or other issues. Regardless of why the condition occurs, it is characterized by severe pain in one or more branches of the trigeminal nerve.
This causes excruciating pain in the corresponding area of the sufferer’s face.
Typical or Atypical?
There are two primary types of trigeminal neuralgia. These may be referred to as either typical and atypical, or TN1 and TN2.
Typical trigeminal neuralgia – or TN1 – is the more common variety. This is characterized by sharp, severe pain that may be described as “shocking” or “stabbing”. This comes and goes in attacks or flares and may be triggered by various stimuli. How long these attacks last and how severe they are will vary.
Atypical trigeminal neuralgia is less common and also much more difficult to manage. While the pain may be less severe and more predictable than TN1, the pain is also likely to be constant. It is also much less responsive to treatment.
Association with Multiple Sclerosis
There is a misconception that people who have trigeminal neuralgia automatically have multiple sclerosis as well. While there is a possible connection between the two conditions, that connection is not as common as people might think.
Only between 1%-2% of people with multiple sclerosis will also develop trigeminal neuralgia. This happens because the myelin sheath – the substance that covers nerves and protects them – weakens and wears away as a result of multiple sclerosis. This demyelination is characteristic of MS and results in irritation of the trigeminal nerve.
Some people who experience demyelination may not have multiple sclerosis. There are several conditions which can cause this issue. Physical irritation can also result in the nerve sheath being damaged or destroyed. When this happens, the nerve is no longer protected and pain can result.
What Does Trigeminal Neuralgia Feel Like?
The type of pain associated with trigeminal neuralgia can vary from person to person. This is because there are several different types of trigeminal neuralgia – and everyone will experience pain differently.
According to the Mayo Clinic, trigeminal neuralgia may feel similar to electric shocks. It may also feel like burning or searing, stinging, or like the affected area has been cut. That pain may last a few seconds at a time for a few minutes a day, or last for hours on end, day after day.
A smaller percentage of people suffer from less common atypical trigeminal neuralgia, which causes a dull, aching, or throbbing pain in the same areas of the face. An even smaller population may experience both types of pain.
Again, the individual experience with trigeminal neuralgia will vary.
Given the fact that this condition is primarily one of nerve pain, it is extremely easy to trigger an attack. Simple actions, activities, or stimuli can prove excruciating fr a person with trigeminal neuralgia, including:
- Brushing teeth
- Taking medication
- Applying makeup or skincare products
- Seeing a dentist
- Wearing glasses, hats, or face masks
- Feeling the wind against the face
- Making certain facial expressions, and more
Many sufferers also report attacks of pain during or after stressful events or experiences. Essentially, many of life’s everyday experiences can trigger trigeminal neuralgia pain – and that is why patients with this condition are often so desperate for a cure.
By Any Other Name…
As with many other medical conditions, trigeminal neuralgia has several names. The most common alternative name for this condition is tic douloureux. You may also hear the condition referred to as fothergill’s disease.
Additionally, you may see the condition referred to by a colloquial term – the suicide disease. This unfortunate name refers to the extremely high rate of suicide among people with this painful condition. Due to the high levels of pain, the way the condition often worsens over time, and the fact that diagnosis and treatment can be difficult, many patients choose to end their suffering by ending their lives.
How is Trigeminal Neuralgia Diagnosed?
Due to the nature of the disease, it can be very difficult to diagnose trigeminal neuralgia. Since pain is the primary complaint – and physical damage or variation of the trigeminal nerve may or may not be visible – diagnosis may be complicated and slow.
Demographics play an important part in diagnosis. Some populations are more likely to develop trigeminal neuralgia. These include:
- People over the age of 50
- Those with other conditions, such as a tumor near the trigeminal nerve or multiple sclerosis
However, these are just guidelines. Many people who develop trigeminal neuralgia fall outside of these populations. This only makes the job of diagnosing the problem all the more difficult for healthcare providers.
Your doctor will typically assess your description of your facial pain first. To diagnose trigeminal neuralgia, your provider will also likely order tests such as a CT scan or MRI. These tests will help to eliminate other potential causes of your pain and potentially help identify issues affecting your trigeminal nerve.
Some descriptors of trigeminal neuralgia facial pain that may help your doctor determine that a person has this condition include:
- Episodic pain
- Pain triggered by something touching or otherwise stimulating your head or face
- Pain focused in one specific spot or side of the face
- Shooting, shocking, or stabbing pain
- Worsening pain and more frequent attacks over time
While these are not always indicators of trigeminal neuralgia – and some patients with TN will experience it differently – these are important factors to mention to your healthcare team!
Treatments and Management – Medication
There is currently no cure for trigeminal neuralgia. However, there are many courses of treatment that can be effective in managing pain. There are also procedures that have the potential to eliminate the pain entirely.
Unfortunately, no course of treatment is 100% effective. Even the most effective methods of treating this condition will not work for everyone.
Because TN pain is nerve pain, it is not generally well controlled by traditional pain management methods. OTC pain relievers and even opioid painkillers are not very effective against facial nerve pain. There are medications available to help control this specific type of pain, though – and they can be very helpful in managing trigeminal neuralgia.
The American Association of Neurological Surgeons recommends several options for treating the pain and other symptoms of TN, including:
- Carbamazepine – The traditional first line of treatment for trigeminal neuralgia. This is an anticonvulsant drug that can help control nerve pain.
- Oxcarbazepine – This is a newer anticonvulsant in the same family as carbamazepine. Oxcarbazepine has fewer side effects and may be more effective for some users. This has made it a popular choice for treatment in recent years.
- Gabapentin – Another anticonvulsant drug that can help manage nerve pain. This drug has minor side effects such as dizziness and drowsiness that generally go away on their own once a patient is accustomed to taking the medication.
There are many other medications that providers may prescribe for treatment of TN, and many doctors try several or a combination of several before they find the perfect choice for each patient. Be sure to speak to your provider about side effects you experience, as well as the effectiveness of the treatment. This way, you and your provider can make adjustments as necessary.
Surgical Intervention and Other Procedures
Medication may not be effective – or be enough – for many patients with trigeminal neuralgia. In these cases, a medical or surgical procedure may be necessary.
John Hopkins Medicine lists some of the most common procedures used to treat and manage trigeminal neuralgia, including:
- Nerve blocks – A nerve block is an injection of medication into the nerve itself. This usually consists of steroids or other medications that can lessen nerve sensation and therefore pain.
- Botox injections – Injections of botulinum toxins – also known as Botox – can be used to dull sensation in the affected areas of the face.
- Glycerol injections – This injection is designed to put pressure on the nerve and cause damage which blocks pain signals.
- Balloon compression – During this procedure, a balloon-tipped catheter is threaded through a hollow needle into the area of the trigeminal nerve. This causes damage to the nerve which can block pain signals entirely.
- Radiofrequency thermal lesioning – This involves the selective damage of nerve fibers to prevent and block pain signals to the brain.
The options above are all short-term. For most people, pain management can be achieved through any of these approaches – but it may only last a few months. Some results may last several years, but the pain will generally return.
Additionally, some facial numbness may result from these procedures – and it may or may not go away.
There are two more long-term solutions for trigeminal neuralgia. These are more popular, since they have more lasting results and are usually more effective. They include:
- Brain stereotactic radiosurgery – Also known as Gamma knife, this procedure uses concentrated radiation to damage the trigeminal nerve. This will cause gradual relief from pain that will improve over the course of several weeks.
- Microvascular decompression – Referred to by many as MVD, this surgery involves decompressing the nerve to eliminate pain. It may also involve the removal of a growth or mass which may be pressing on the nerve or the removal of a vein which is doing the same. The relief is immediate and the surgery can be curative, but around 30% of patients have recurrence within ten years after the procedure.
Remember that there are risks involved with all of these procedures. While seeking relief from TN pain can make decision making difficult, investigating these risks is worth your time.
If you believe that you or your loved one may be suffering from trigeminal neuralgia, I advise that you speak to your doctor as soon as possible. Ask for a referral to a neurologist and get the help you need to manage the condition.
I know from personal experience how isolating this disease can be. I have been on various medications, tried numerous treatment approaches, and even underwent one surgery that did not bring me the relief I was hoping for. Trust me when I say I feel your pain if you are dealing with this condition!
Just know that you are not alone – and that there are options available for treatment and management of pain. Please advocate for yourself or your loved one and seek professional medical advice. There may not yet be a cure for trigeminal neuralgia, but there can be a much better life with the right treatment approach!