Orofacial pain

Orofacial pain refers to pain in the head, neck, and mouth area and is a common condition. Besides its physical effects, orofacial pain can also have an emotional impact. This page is designed for individuals diagnosed with chronic orofacial pain who are currently receiving or have received medical treatment. It provides information on how you might be affected, strategies to cope with the pain, and the additional support available.

On this information page, the term "orofacial pain" refers to chronic rather than acute orofacial pain. The pain has persisted beyond the initial healing phase of three months. This means that the pain no longer serves to protect the area that was initially damaged. We will discuss two forms of chronic orofacial pain. On one hand, we have episodic spontaneous orofacial conditions, where the pain is alternating and often unpredictable. On the other hand, there are also continuous orofacial conditions, where the pain is persistent and often unrelenting.

Episodic Spontaneous Orofacial Pain

Episodic spontaneous orofacial pain is pain that is not provoked by touch.

Trigeminal Nerve Injuries:
Trigeminal nerve injuries are nerve damages that can result from jaw surgery, injections, implants, and root canal treatments. When sensory nerves are damaged, they sometimes do not heal, leading to chronic pain. This is an intense pain that is often triggered by eating, drinking, speaking, kissing, and external factors such as a cold breeze. Sometimes, the pain can be constant with or without pain-free episodes.

Trigeminal Autonomic Cephalalgias (TAC):
• They cause severe, episodic, intense pain around the eye with symptoms such as:
• Eye tearing
• Runny or blocked nostril
• Drooping eyelid
• Constricted pupil
• Facial flushing and sweating

Episodic Migraine:
Migraine is perhaps the most studied of headache syndromes. It is estimated that 17 percent of women and 6 percent of men suffer from migraines. The condition usually manifests between the ages of 20 and 40. Migraine is characterized by five or more headache attacks lasting 4 to 72 hours each, without symptoms between the attacks, and with moderate to severe pain. The pain is often throbbing in nature. Other features of migraine include extreme sensitivity to light (photophobia), aversion to loud sounds (phonophobia), nausea, and oversensitivity to odors (osmophobia). The pain worsens with exertion and improves with sleep.

Trigeminal Neuralgia (TN):
Typical trigeminal neuralgia is characterized by sudden, stabbing, electric, shock-like, or burning pain episodes lasting less than two minutes in one or more branches of the trigeminal nerve. Patients typically have no symptoms between attacks. The pain can be triggered by certain daily activities such as eating, talking, washing the face, or brushing teeth. The syndrome is most common in patients over 50 years old. The course can vary over many years, and symptom-free periods of months or years are not uncommon. The issue with TN is that in the early stages, it often resembles toothache, which can mislead both the patient and the (dental) practitioner.

Continuous Orofacial Pain Conditions

Temporomandibular Dysfunction (TMD):
Temporomandibular dysfunction is one of the most common orofacial pain conditions that affect adults during periods of stress, such as exam periods. It is accompanied by ear pain and worsens when opening the mouth, eating hard foods, and applying pressure to the joint. TMD pain is best resolved with reassurance and pain relievers, especially by avoiding overloading the jaw system. Overloading can occur, for instance, by clenching and grinding teeth together. Signs of poor function include frequent clicking, a grinding sound or sensation between bone and cartilage (crepitus), or locking of the temporomandibular joint. All these symptoms result from the bones not moving smoothly.

Jaw muscle pain is often related to chronic teeth clenching or grinding (bruxism). A conservative treatment is most effective for this condition. This entails unlearning bad habits during the day and providing patients with physiotherapy and specific oral splints (a type of plastic brace) for nighttime use, along with reassurance and pain relievers. Surgical treatment is rarely recommended.

Burning Mouth Syndrome (BMS):
Burning Mouth Syndrome (oral burning, tongue burning) is defined as chronic pain or discomfort of the mouth's mucous membranes with an unknown cause, after excluding other possible causes. The condition is more common in women during the transition from menopause to postmenopause. Patients report a constant burning sensation, usually in the front part of the tongue. Other common locations include the front of the hard palate and the inside of the lips. Sometimes, the entire mouth is affected.

Persistent Dento-Alveolar Pain (PDAP) and Atypical Neuralgia:
This refers to persistent tooth pain that can also occur after dental treatments such as a root canal procedure.

Post-Herpetic Neuralgia:
Facial skin lesions can be caused by reactivation of the varicella-zoster virus in sensory nerves. Severe pain that lasts for two or more months after acute skin lesions is called post-herpetic neuralgia. Post-herpetic neuralgia usually occurs after an episode of shingles. It rarely affects the mouth and face area.

Chronic orofacial pain can be exhausting, with impacts felt on multiple fronts: physically, emotionally, mentally, and behaviorally. It can sometimes lead to vicious cycles that become hard to break out of.

Physical Effects

The exact characteristics of orofacial pain vary from case to case and individual to individual. However, it's evident that the primary physical effect is the experience of pain. The physical effects of orofacial pain should be addressed in collaboration with your medical team.

Normal functions of the face and mouth are significantly compromised by persistent or provoked pain, amplifying the psychological impact on the patient.

Emotional Effects

The constant pain and discomfort associated with orofacial pain disorders can significantly affect your emotional well-being. Initially, receiving a diagnosis can bring relief as the problem gets recognized and named. However, orofacial pain can lead to challenging emotional responses:

• Increased irritability: You might feel angry about your orofacial pain, the time it took to get diagnosed, and the daily life limitations it imposes. The long-term prognosis and chances of complete recovery may not always be clear, leading to frustrations.
• Slightly increased risk of depression: Living with a chronic health issue can heighten the risk of feeling down or depressed. Feelings of sadness, numbness, hopelessness, negative thoughts about oneself, others, or the world, loneliness, or feeling unsupported can arise. If you ever feel that life isn't worth living, it's vital to inform a doctor, visit your general practitioner, or seek emergency care, especially if you think you might act on such thoughts.
• Ruminations and anxiety: You might constantly worry about the implications of the condition. Persistent thoughts like 'Is there permanent damage?', 'Will this go away?' and 'Will I ever feel better, and will the pain stop?' can hinder some activities.

These feelings are entirely natural and can arise at various stages of illness as you process new information. They may come and go over time and often dissipate as you come to terms with your condition. However, if persistent, there are ways to address them, discussed later in the brochure.

Effects on Thinking

Our understanding of experiences largely depends on our thought processes. Positive thoughts can be beneficial and help navigate tough times. However, during stressful periods, we might be plagued by unhelpful thoughts, often termed 'unhelpful thinking styles,' which follow certain patterns. Recognizing these patterns can be beneficial. Some examples include:

• Mind reading: “The doctor thinks I'm exaggerating my pain.”
• Black-and-white thinking: “Since the doctors can't guarantee results, it's a waste of time.”
• Self-criticism and labeling: “I can't escape these gloomy thoughts or be positive. I'm a failure.”
• Self-imposing language: “I should cope with this and lead a normal life. I must get this under control.”
• Black-and-white thinking: “Nothing's improving; I might as well give up.”
• Catastrophic thinking: “I'll never feel better.”
• Fortune telling: “What if I'm too disabled to work and lose my job?”

You might resonate with some of these statements or have your own unique ones.

Effects on Actions

Certain actions can positively influence how you feel physically and emotionally, such as:

• Maintaining a healthy diet.
• Engaging in physical exercise.
• Having a proper sleep routine.
• Allocating time for activities you enjoy.

Conversely, some habits might offer short-term relief but worsen your long-term well-being by inhibiting 'sustainable' actions:

• Smoking.
• Using illicit drugs.
• Excessive alcohol consumption.
• Spending excessive time playing video games or watching TV.

You might start avoiding things due to anxiety, lack of interest, or discomfort. For instance, postponing medical appointments or discontinuing helpful medications might seem easier initially, but such avoidance can compound problems in the long run.

Vicious and Virtuous Cycles

The above sections describe how your body, thoughts, feelings, and behavior can be influenced by orofacial pain. You might notice how interconnected these aspects are, implying that a change in one area can cascade into another. Our thoughts about a situation, for example, can dictate our feelings and actions. This relationship can be visualized as a cycle. While some cycles operate in a positive, helpful manner (virtuous cycles), others can interact negatively (vicious cycles).

Vicious Cycle Example:

Sam was diagnosed with typical trigeminal neuralgia and struggled with the unpredictability of his pain. Brushing his teeth or eating would instill immense fear of triggering a pain episode.

Sam developed a routine that took hours longer than usual to prepare and eat, hoping to avoid a pain episode. When invited out by friends, Sam thought, "I won't have time with everything else I need to do." As a result, he never went out, leading to feelings of loneliness and an inability to accomplish anything else in his day.

Vicious Cycle Example:

Sarah was diagnosed with post-herpetic neuralgia. The constant pain made her avoid leaving the house unless necessary. She quickly felt bored, hopeless, and isolated. When she tried venturing out after a few weeks, she felt anxious and experienced intensified pain. She thought, "If it's just going to worsen every time I go out, there's no point." As a result, Sarah isolated herself even more, feeling increasingly lonely and depressed.

The treatment of chronic orofacial pain is structured around four primary pillars, in order of importance:

1. Self-help: Learning to cope with chronic orofacial pain
2. Psychological support
3. Medication
4. Surgical procedures

Coping with Orofacial Pain

It's vital to remember that while living with orofacial pain, complete relief may not always be achievable. However, it's possible to find ways to manage the pain, continue living your life, and feel better overall.

Addressing Negative Thoughts

Throughout the day, we are continuously bombarded with thoughts. These thoughts can be pleasant, unpleasant, or neutral. Consider the mind as a constant commentator, shedding light on our surroundings. Often, this commentary is constructive, focusing on pleasant events or recalling cherished memories. However, during stressful periods, the mind might emphasize the negatives, conjuring past regrets or painting bleak futures. It's essential to understand that while these thoughts might feel entirely accurate, they aren't always representative of reality. Recognizing that thoughts are just thoughts – not facts – can prevent them from overwhelming us.

To address negative thoughts:

1. Acknowledge them: Pay attention to what your mind is 'saying'.
2. Challenge them: Ask yourself questions to assess the validity of these thoughts. For instance:
   • Why do I believe this thought to be true?
   • Is there any evidence suggesting otherwise?
   • Is there another perspective on this?
   • What advice would I give a friend with similar thoughts?
   • What are the pros and cons of thinking this way?

Even if this doesn't eliminate the negative thoughts, it can reduce their impact.

For instance, consider Sam, who struggled with his daily routine due to fear of a trigeminal neuralgia episode. By recognizing and challenging his negative thoughts, Sam was able to shift his perspective and gradually reintroduce social interactions into his life, reducing feelings of despair and anxiety.

Similarly, Sarah, who chose isolation due to her pain, learned to challenge her self-defeating beliefs, leading her to reconnect with friends and gain a better grasp over managing her pain.

Mindfulness

If challenging thoughts directly isn't fruitful, consider practicing mindfulness. This approach emphasizes staying present and becoming more aware of your thoughts and physical sensations. Instead of automatically reacting to thoughts, mindfulness encourages a curious, non-judgmental examination of them.

For those interested, Acceptance and Commitment Therapy (ACT) can complement this mindful approach.

Addressing Unproductive Behaviors

Healthy living often incorporates advice on diet, sleep, exercise, and medication. If you've developed habits that counter these recommendations, it might be more effective to introduce positive behaviors rather than trying to eliminate negative ones outright.

To do this, consider your values (e.g., family, health, hobbies) and act in alignment with them. Doing things you enjoy or that offer a sense of accomplishment can be particularly therapeutic.

Dealing with Anger and Irritability

Anger is a natural emotion, but it becomes problematic if it's excessive, poorly timed, or long-lasting. Often, anger is triggered when we feel wronged or denied something we believe we're entitled to. Physical sensations accompanying anger, due to the body's fight-or-flight response, include rapid heartbeat, shortness of breath, tension, sweating, and others.

To manage anger: Recognize and challenge angry thoughts using questions like "How significant is this?" or weighing the pros and cons of such a mindset.

Psychological therapy

Psychological therapy is a vital component in the treatment of chronic pain. Your treating physician can provide further information about this and refer you as needed.

Medication for Orofacial Pain

There are various medical interventions available to address the causes and symptoms of orofacial pain. Medications that may be prescribed include antidepressants, antiepileptics, and pain relievers. It's crucial to discuss the different medical treatment options with your medical team.

You may have been prescribed medication for orofacial pain by your doctor. Such medications may include antidepressants and antiepileptics.

Certain antidepressants, in addition to their antidepressant effects, also have analgesic properties as they enhance the body's natural pain inhibition system. Possible antidepressants prescribed for pain treatment are:

• Redomex® (amitriptyline)
• Nortrilen® (nortriptyline)
• Cymbalta® (duloxetine)
• Efexor® (venlafaxine)

Specific antiepileptics not only address seizures but also alleviate pain. They are commonly prescribed for neuropathic pains. Possible antiepileptics prescribed for pain treatment include:

• Lyrica® (pregabalin)
• Tegretol® (carbamazepine)
• Trileptal® (oxcarbazepine)
• Neurontin® (gabapentin)

It's common to experience minimal change in your symptoms during the initial week or weeks. The analgesic effect of antiepileptics may only manifest a week after commencing, while that of antidepressants may often take up to three weeks. These drugs require more time to have a full effect on the body. Discontinuing the medication prematurely might result in the pain not subsiding.

Course of Treatment

The doctor will prescribe the most appropriate medication and dose for you. They may also provide a schedule to help you gradually increase the medication. It's vital to follow this regimen strictly.

Tips for Taking Antidepressants

• Take your medication daily at roughly the same time. This results in better pain relief and fewer side effects.
• Initially, a low dose will be prescribed. In consultation and as directed by the doctor, the medication can be slowly increased.
• It's best to take this medication during or after a meal to prevent nausea.
• Never discontinue this medication on your own. Always consult with your doctor. The medication should also be reduced gradually.

Common Side Effects of Antidepressants

Nausea and Vomiting

These side effects are common when starting antidepressants but often disappear after a few days. If necessary, you can take medication to combat nausea temporarily.

Fatigue, Drowsiness, Dizziness

These side effects often arise when starting or increasing the dosage but usually subside after a few weeks.

Constipation

Constipation is common. Drinking enough water, consuming fiber-rich food, or taking a laxative can help.

Other Possible Side Effects

• Weight gain
• Tremors
• Excessive sweating
• Palpitations
• Anxiety
• Insomnia or restlessness
• Mood swings

Tips for Taking Antiepileptics

• It's best to take the medication daily at around the same time. This often results in better pain relief and fewer side effects.
• Initially, a low dose of this medication will be prescribed. In consultation and as directed by the doctor, the dosage can be slowly increased.
• Never discontinue this medication on your own. Always consult with your doctor. The medication should also be gradually reduced.
• It's best to take the highest dose in the evening.

Common Side Effects of Antiepileptics

Fluid Retention

You might retain fluid, especially in the legs or feet, leading to weight gain. If necessary, the doctor might prescribe diuretic medication.

Drowsiness, Dizziness (feeling of intoxication)

These symptoms are very common when starting the treatment or increasing the dose but often disappear after two to three weeks. There's no need to take additional medication for these.

Reduced Concentration

Other Possible Side Effects

• Confusion
• Blurred vision
• Dry mouth
• Increased appetite
• Tremors
• Irregular limb movements
• Nausea and vomiting
• Mood fluctuations
• Headaches
• Hot flashes

Issues with Discontinuing Medication

Some medications can cause dependence, which means that if you suddenly stop taking the drug, you might experience withdrawal symptoms. Thus, it's crucial to establish a tapering schedule with your primary care physician, ensuring a safe discontinuation when desired or necessary.

Issues with Modifying Current Medication

Just as starting a medication, increasing its dosage can lead to side effects. These effects are generally less pronounced and often disappear within seven to ten days.

• Several surgical procedures are available for treating orofacial pain:
• Injections
• Implants
• Nerve ablation: a fluid is used to deactivate a small nerve area
• Procedure to reduce pressure on the nerve

Surgical treatments are rarely the primary method for addressing chronic pain. Whether you are a suitable candidate requires thorough examination by a specialist. If this option is being considered, your primary care physician will refer you accordingly.