When classifying the severity of chronic pain disorders, many people would agree that trigeminal neuralgia pain is the most challenging and painful conditions. Hard to diagnose, often unpredictable, and in some cases intractable, this disorder is frequently referred to as the “suicide disease” because of its severity. With a proper diagnosis and some persistence, there are treatment options for this pain condition that can make life better. Here are the 13 trigeminal neuralgia symptoms you should know – and three treatment options.
What is trigeminal neuralgia?
Trigeminal neuralgia, also referred to as TN pain or tic douloureux, is pain that originates in the trigeminal nerve. This nerve is one of 12 pairs of nerves that enervate the head, neck, and face. The trigeminal nerve is located on either side of the face just behind the ear.
There are three branches of the trigeminal nerve: the upper, medial, and lower. The upper branch controls sensation in the eye, upper eyelid, and forehead. The medial branch enervates the lower eyelid, cheek, nostril, upper lip, and upper gum. Finally, the lower branch controls sensations in the jaw, lower lip, lower gum, and some of the chewing muscles. Trigeminal neuralgia pain location depends on which branch of the nerve is affected (most commonly the lower branch).
In most cases, trigeminal neuralgia occurs only on one side, but those suffering from bilateral trigeminal neuralgia experience symmetrical pain on both sides of the face.
Approximately 150,000 people in the U.S are diagnosed with trigeminal neuralgia annually. The pain of this condition is so debilitating that it is sometimes referred to as the “suicide disease.” Patients diagnosed with this type of chronic pain often experience high rates of suicidal ideation and high rates of depression, anxiety, and sleep disorders.
Because it is commonly misdiagnosed as migraine, patients may experience no relief from treatment that does not address their actual condition.
What causes trigeminal neuralgia?
Trigeminal neuralgia causes are not definitive, but there are a few conditions that may trigger pain.
Blood vessels that press on the trigeminal nerve may cause damage to the protective coating on the nerve (the myelin sheath). Once this protective coating is gone, the nerve becomes sensitive. People with multiple sclerosis have a higher incidence of trigeminal neuralgia, as the disease causes wear on the myelin sheath as well.
Other potential trigeminal neuralgia causes include:
- Nerve compression by a tumor
- Arteriovenous malformation (tangled arteries and veins)
- Herpes zoster (shingles)
- Injury to the trigeminal nerve
Injury to the trigeminal nerve can be caused by injury to the face, oral or sinus surgery, or stroke.
What are the most common trigeminal neuralgia symptoms?
While trigeminal neuralgia and migraine share some symptoms, there are characteristics of trigeminal neuralgia that help patients receive an accurate diagnosis. Here are the 13 most common trigeminal neuralgia symptoms.
- Shooting pain
- Spontaneous pain
- Episodic pain
- Constant ache (in some cases)
- Burning sensation
- Pain on one side of the face
- Pain that is unresponsive to pain medication
- Uneven durations of pain
- Increasingly frequent attacks
- Ear pain
- Sensitivity to light
Here’s what you should know about each one.
The characteristic pain of trigeminal neuralgia is shooting pain that some patients describe as an electrical shock.
Perhaps the most challenging aspect of trigeminal neuralgia pain is the spontaneity of it. Even the slightest touch (like a breeze blowing across the face) can trigger pain.
Episodic pain is most characteristic of typical trigeminal neuralgia. Pain comes and goes with periods of relief. As the damage to the trigeminal nerve progresses, periods of remission become increasingly shorter.
A constant ache is not common for trigeminal neuralgia, but those who suffer from atypical trigeminal neuralgia (see below) cite this as their most prominent symptom.
Patients most often feel burning sensations in the initial stages of trigeminal neuralgia. In some cases, this may also be accompanied by a “fuzzy” type of feeling, as when a limb falls asleep. For most people, a mild burning sensation is one of the first symptoms they identify.
Pain on one side of the face
Trigeminal neuralgia pain occurs most often only on one side of the face. Because this pain is episodic and on one side, it can sometimes be misdiagnosed as a cluster headache.
Cluster headaches are also referred to as suicide headaches due to their intensity and resistance to treatment.
Pain that is unresponsive to pain medication
In the early stages, trigeminal neuralgia may respond to pain medication, but rarely. People who suffer from this pain report getting no relief from even the strongest prescription pain medications.
Uneven durations of pain
Attacks can last a few seconds or a few minutes (rarely longer). The unpredictable nature of trigeminal neuralgia pain is another feature of this condition that makes it especially difficult to live with.
Increasingly frequent attacks
As noted above, periods of remission are usually interspersed with painful episodes. Over time, these periods of remission become increasingly rare and may disappear altogether.
Trigeminal neuralgia ear pain may resemble an ear infection, except there are no physical signs of ear infection (e.g., swelling, redness, or excessive fluid in the ear).
The next three symptoms are why trigeminal neuralgia is frequently misdiagnosed as migraine. As with migraine, some trigeminal neuralgia sufferers experience nausea. This may be due to a variety of factors, including feelings of anxiety as painful episodes begin.
The stress and strain of dealing with a chronic disease may come with extreme fatigue, especially after a painful episode.
Sensitivity to light
Some patients experience sensitivity to light that is similar to migraine symptoms. This is not common and is not in and of itself enough to diagnose trigeminal neuralgia (or migraine, for that matter).
Atypical trigeminal neuralgia symptoms are more frequently burning and aching pain that is nearly constant and of somewhat lower intensity. This is sometimes referred to as Type 2 trigeminal neuralgia or TN2 (with typical trigeminal neuralgia referred to as Type 1 or TN1). Both types can have all of the symptoms as described above, but burning, constant aching is less common in Type 1.
Do I have trigeminal neuralgia?
Unfortunately, there is no definitive diagnostic test for trigeminal neuralgia. A proper diagnosis involves careful identification of the type and location of your pain, including its duration and frequency. Your doctor may suggest tracking your pain for a period of time to get the most accurate information, including potential triggers.
Your doctor may use an MRI to determine if there is a tumor present, but this cannot offer a definitive diagnosis if there is no tumor visible. Special MRIs may also be able to identify blood vessels that are compressing the trigeminal nerve.
Any underlying conditions (e.g., multiple sclerosis or lupus) may be helpful in determining a diagnosis, but this is not always the case.
For the most part, a combination of symptom tracking, MRI scans when appropriate, and analysis of any underlying conditions are most helpful in diagnosing trigeminal neuralgia.
How to avoid trigeminal neuralgia triggers
Avoiding trigeminal neuralgia triggers is challenging, to say the least. Many of these triggers are daily tasks or fall under the realm of things we cannot control. Trigeminal neuralgia triggers include:
- Touching your face
- Brushing your teeth
- Putting on makeup
- Encountering a breeze
- Changes in barometric pressure
- Smiling (or frowning)
- Increase in blood pressure
- Cold weather
- Consumption of alcohol
- Washing your face
Essentially, any contact with your face, including the slightest breeze, can trigger pain.
Additionally, teeth cleaning and oral surgeries can provoke intensely painful flare ups, causing many patients to avoid visiting the dentist (which can lead to serious health problems as well!).
What are common trigeminal neuralgia treatments?
Because pain medications are often ineffective for trigeminal neuralgia, doctors rely on two main classes of prescription medications to provide relief: anticonvulsants and muscle relaxants.
Carbamazepine is the most common medication for treating trigeminal neuralgia. Unlike other medications, carbamazepine may control pain in the early stages of trigeminal neuralgia.
This can also diagnose the cause of your pain. If a patient has no relief from this treatment, a doctor may suspect that there is no trigeminal neuralgia. Unfortunately, the effectiveness of this medication decreases over time.
This was the first medication to treat trigeminal neuralgia. Side effects may include issues with gum overgrowth, plus balance issues and drowsiness.
Oxcarbazepine is similar to carbamazepine but has fewer side effects. Both are used as a first-line medication to treat trigeminal neuralgia.
There are side effects such as dizziness and double vision, but these are generally mild and manageable.
This anticonvulsant can also help with anxiety, restless leg syndrome, and withdrawal from some types of drugs and alcohol.
There are side effects that may be troubling, including increased hostility, motion sickness, and blurred vision.
Baclofen is often used in conjunction with either carbamazepine or phenytoin. There is an increased likelihood of depressive disorders with this medication.
Clonazepam is a benzodiazepine for muscle relaxing. Side effects that include sleepiness and poor coordination restrict this treatment to those who can rest while it takes effect. Additionally, patients who stop taking this medication abruptly may experience withdrawal symptoms.
All medications prescribed for trigeminal neuralgia come with side effects and may not be safe for women who are pregnant or who are trying to become pregnant.
Additionally, because they do not repair nerve damage or stop it from progressing, patients may need increasingly higher doses to find relief. Over time, some medications may stop being effective altogether. It is important to discuss all of your options with your doctor to find a medication approach that is best for you.
If medications are not effective or are not an option, there are interventional surgical treatments available.
Open surgery is the surgery of choice for patients whose trigeminal neuralgia is caused by pressure from a blood vessel on the trigeminal nerve. Known as microvascular decompression, this surgery pinpoints the blood vessel causing the pressure and gently moves it away from the trigeminal nerve. This can decrease nerve sensitivity and give the trigeminal nerve the space it needs to repair itself.
While microvascular decompression is often effective, the risks can be substantial, as the skull is opened to perform the procedure. Risks of this type of surgery include facial numbness, facial weakness, and slight hearing loss.
Another category of surgical intervention is lesioning techniques. There are four options.
- Percutaneous stereotactic rhizotomy: This uses heat passed through an electrode and into the trigeminal nerve to destroy the pain-causing part of the nerve and to block pain signals to the brain
- Percutaneous glycerol rhizotomy: Glycerol performs the same function as heat to block pain signal transmission to the brain
- Stereotactic radiosurgery (also known as gamma knife): A pinpointed dose of ionizing radiation to the trigeminal nerve roots causes a pain-blocking lesion to form
- Percutaneous balloon compression: A small balloon is temporarily placed in the trigeminal nerve itself, inflated to destroy pain-causing fibers within the nerve
Lesioning techniques are much less invasive than open surgery, but there are side effects. Additionally, pain relief may not be permanent or even long-lasting.
At Pain Doctor, we have seen the debilitating effect that trigeminal neuralgia symptoms have on our patients. You can find a pain specialist in your area by clicking the button below or looking for one in your area by using the tips here: https://paindoctor.com/pain-management-doctors/.