Trigeminal Neuralgia

What is trigeminal neuralgia?

• Trigeminal neuralgia (TN), or tic douloureux, is when a problem with your trigeminal nerve causes severe (very bad) facial pain. You have a trigeminal nerve on each side of your face, and each nerve has three branches. Each nerve branch allows you to feel sensations, such as pain, touch, and temperature changes in different areas of your face. The three branches of your trigeminal nerve include the ophthalmic, maxillary, and mandibular branches. The ophthalmic branch controls sensations in your eye, eyebrow, and forehead. The maxillary branch allows sensations in your cheek, side of your nose, and under your eye. This branch also includes sensations felt in your top lip and top teeth and gum. The mandibular branch provides sensation to your lower lip, teeth, and gum, and the side of your tongue. You will also get sensation in your lower jaw and the side of your head near your ear from the mandibular branch. The mandibular branch also helps with eating functions, such as biting, chewing, and swallowing.
  
  
• The facial pain with TN can occur in one, two, or all three of the nerve branch areas. TN pain normally only occurs on one side of your face but can occur on both sides. TN causes sudden, sharp, burning, or shock-like pain attacks in the area linked to the problem nerve branch. Most attacks occur during the day and may last from less than one second up to two minutes. You may have repeat attacks for minutes to hours. The repeat attacks may occur from weeks to months to years, and often get worse over time. You may have spasms (twitches) in your facial muscles during the attack. Treating your TN may help decrease your pain and the number of attacks you have. Treatment may help you return to your normal daily activities.

What causes trigeminal neuralgia?

The exact cause of TN is not always known. TN may occur if a blood vessel is pressing on your trigeminal nerve. The pressure may damage the nerve and cause the nerve to send incorrect pain messages to your brain. A growth, such as a tumor or cyst, may also press on the trigeminal nerve and cause TN. Damage to the trigeminal nerve leading to TN may also be caused by diseases, such as multiple sclerosis (MS). The trigeminal nerve can also be damaged during surgery, head trauma (injury), or a stroke. Your risk for getting TN is higher if you are over 50, female, or you have high blood pressure.

What can lead to a pain attack caused by trigeminal neuralgia?

Most pain attacks are brought on by triggers, or by touching a trigger zone on your face. Trigger areas include the side of and under your nose, your lips, gums, and tongue. When the trigger areas are touched, a pain attack can occur. Triggers of a pain attack include eating, drinking, shaving, and washing your face, putting on makeup, and combing your hair. Triggers may also include smiling, yawning, talking, wind, noise, lights, and temperature changes that touch your face. Sometimes, the pain may be so severe that you cannot do your normal activities, such as eating, drinking, or speaking. After each pain attack, there is normally a period of time where you cannot bring about another attack. Some people may have periods of days to years without any TN pain attacks.

How is trigeminal neuralgia diagnosed?

Your caregiver will ask you about your symptoms and any health problems you may have. Tell your caregiver if you have any close family members with TN. Your caregiver will do a physical exam and look at your head, neck, mouth, jaws, and teeth. You may also need any of the following tests:

• Blood tests: You may need blood taken to give caregivers information about how your body is working. The blood may be taken from your hand, arm, or IV.
  
  
• Dental x-rays: Dental x-rays are pictures of your teeth and jaw. You may need dental x-rays to look for problems with your teeth that could be causing your pain.
  
  
• Computerized tomography scan: A computerized tomography (CT) scan is a special x-ray machine that uses a computer to take pictures of your brain. It may be used to look at bones, muscles, brain tissue, and blood vessels. You may be given dye before the pictures are taken. The dye is normally given in your IV (a small tube in your blood vessel). The dye may help your caregiver see the pictures better. People who are allergic to iodine or shellfish (lobster, crab, or shrimp) may be allergic to some dyes. Tell the caregiver if you are allergic to shellfish, or have other allergies or medical conditions.
  
  
• Magnetic resonance imaging: During magnetic resonance imaging (MRI), pictures are taken of your head. MRIs may be used to look at your brain and trigeminal nerve. You will need to lie still during an MRI. Never enter the MRI room with any metal objects. This can cause serious injury.
  
  
• Magnetic resonance angiography: Magnetic resonance angiography (MRA) is a test used to look at the blood vessels in your brain. This test may show if a blood vessel is pressing on your trigeminal nerve. An MRA may be done together with an MRI to help caregivers better understand your TN.
  
  
• Sensory testing: Sensory testing checks how the nerves of your face react to different impulses or triggers, such as touch and heat. Caregivers will touch items to your face to check for feeling and pain. Objects include warm and cool items, a piece of cotton wool, or a pin. Ask your caregiver for more information about sensory testing.

What medicines may be used to treat trigeminal neuralgia?

For some people, TN may go away on its own without treatment. If your TN is caused by another condition, your caregiver will work with you to also treat that condition. You may also need one or more of the following treatments for your TN:

• Medicines:
  
  
  • Anticonvulsants: Anticonvulsants are medicines given to control seizures. These medicines may be used to help prevent TN pain attacks and decrease your TN symptoms.
    
    
  • Antidepressants: Antidepressant medicines may be given to help decrease your pain and help prevent depression (deep sadness).
    
    
  • Muscle relaxers: Muscle relaxers are medicines to help relax your muscles. When your facial muscles are relaxed, you may be less likely to have pain attacks.
    
    
  • Nerve block: A nerve block is a shot of medicine that makes you lose feeling in an area of your body. You may need a nerve block if your pain is not going away, or is getting worse. A nerve block may also be used to make you lose feeling in an area before a procedure is done.
    
    
  • Pain medicines: You may be given pain medicines to help decrease your facial pain.
  
  

What procedures or surgeries may be done to treat trigeminal neuralgia?

You may need a procedure or surgery to treat your TN if it does not get better with medicines. A procedure or surgery may also be needed if you cannot take the medicines used to treat TN. Ask your caregiver for more information about these and other procedures or surgeries done to treat TN:

• Microvascular decompression: Microvascular decompression is surgery to separate your trigeminal nerve from the blood vessel pressing on it.
  
  
• Percutaneous procedures: Percutaneous procedures are done to destroy an area of the trigeminal ganglion to help control your pain. The trigeminal ganglion is the area where each nerve branch comes together. The trigeminal ganglion is reached by inserting a needle and tube through your foramen ovale. Your foramen ovale is a hole at the bottom of your skull that nerves pass through. Percutaneous procedures are also called percutaneous rhizotomies. Ask your caregiver for more information about the following:
  
  
  • Balloon compression: During this procedure, a very small balloon is inserted through the foramen ovale and inflated. Once the balloon is inflated, it presses on the trigeminal ganglion and helps decrease or stop your TN pain.
    
    
  • Glycerol injection: During this procedure, glycerol is injected into your trigeminal ganglion to block the nerve impulses and decrease your symptoms.
    
    
  • Radiofrequency thermocoagulation: During radiofrequency thermocoagulation, electric impulses are used to make changes in your trigeminal nerve. This treatment is done so your trigeminal nerve will stop sending pain messages to your brain.
  
  
• Peripheral techniques: Peripheral techniques are done to block the impulses from your trigeminal nerve that cause your TN pain attacks. They may also be done to destroy the area of your trigeminal nerve that is causing your symptoms. Peripheral techniques include the following:
  
  
  • Alcohol injection: During this treatment, alcohol (medicine) is given as a shot into the area of your trigeminal nerve that is causing your symptoms.
    
    
  • Cryotherapy: For cryotherapy, an area of your trigeminal nerve is frozen.
    
    
  • Neurectomy: During a neurectomy, the damaged part of your trigeminal nerve is cut and removed.
  
  
• Stereotactic radiosurgery: During stereotactic radiosurgery, or Gamma Knife surgery, radiation beams are directed at an area of your trigeminal nerve. The radiation beams may help remove a blood vessel that is pressing on the nerve. You may have some pain relief right away after radiosurgery. It may also take at least one month before you have decreased TN pain.

What other treatments may be suggested to decrease my trigeminal neuralgia pain?

• Acupuncture: During acupuncture treatment, caregivers insert very thin needles just under your skin. This treatment may decrease your TN pain and improve healing. Always see a caregiver for acupuncture. Do not try to give this treatment to yourself.
  
  
• Biofeedback training: Biofeedback is a special way to control how your body reacts to things like stress or pain. The first step in this training is to use electrodes (wires) to monitor your body responses. These electrodes are placed on different parts of your body, such as your chest. The electrodes are attached to a TV-type monitor which gives a paper tracing of your heart beating. You will learn how to control body changes, such as slowing your heart rate, when you become upset.
  
  
• Chiropractic care: Chiropractic care may include manipulation, which is when caregivers move your joints, such as your jaw or neck. Caregivers may also massage painful areas. Ask your caregiver for information about Chiropractic care and if it is right for you.
  
  
• Cognitive behavior therapy: Cognitive behavior therapy (CBT) helps you to change your behavior. It may help you better handle your TN symptoms. CBT also trains you how to cope with your TN.
  
  
• Meditation and relaxation therapy: Meditation teaches you how to focus inside yourself. The goal of meditation is to help you feel more calm and peaceful. Relaxation therapy teaches you how to calm your body and mind. The goal is to feel less physical (body) stress and have less emotional (mind) stress. You may also be taught self-hypnosis to help you learn how to relax by deep concentration (focused attention).

What are the risks of treating trigeminal neuralgia?

• Medicines used to treat your TN may cause an allergic reaction including a skin rash and trouble breathing. Some medicines may cause nausea (upset stomach), diarrhea (watery bowel movements), loss of appetite, and weight loss. You may feel dizzy, off balance, drowsy, weak, confused, or nervous while taking some medicines. You may have headaches, vision changes, or problems with your eye movements. TN medicines may cause swelling in your ankles and feet, low levels of body salt, and liver problems. Medicines may not help your TN. Over time, some medicines may stop working and your symptoms may return.
  
  
• Procedures and surgeries to treat TN may cause facial pain and discomfort, weakness, numbness, tingling, bruising, or swelling. They may cause eye numbness, pain, dryness, swelling, or tearing. You may have changes in your vision, hearing, memory, speech, sense of smell or taste, or trouble chewing. You may get mouth sores or an infection, such as meningitis (swelling of the covering of your brain and spinal cord). Cerebrospinal fluid (CSF) from your brain may leak out of your procedure or surgery site. You may also be at risk for brain and nerve damage, seizures, stroke, or even death. After treatment with a procedure or surgery, your TN may come back, or you may have a new TN pain.
  
  
• If your TN is not treated, your pain attacks may get worse and occur more often. If a growth or other medical problem is causing your TN pain, you may not get proper treatment. You may begin to have a dull constant ache in areas of your face. Your TN pain, and fear of an attack, may be so bad that you stop brushing your teeth, eating, drinking, and speaking. This may lead to dental problems, poor nutrition, weight loss, and dehydration (loss of body water). You may feel tired, anxious (nervous), and you may become depressed (deep sadness). You may not want to be around others and find it hard to do your daily activities, such as work. If your depression gets severe, you may think of hurting or killing yourself. Talk with your caregiver if you have questions or concerns about your condition, treatment, or care.

How can I help manage my trigeminal neuralgia?

• Keep your medicines nearby: Always keep your TN medicines within reach at home or when traveling. Even if you have not had TN symptoms for a long time, keep your medicine nearby. If your symptoms return, contact your caregiver before starting to take your medicines again.
  
  
• Take your medicines as directed: Do not stop taking your medicines without talking with your caregiver first. Stopping your TN medicines suddenly can cause a bad reaction and your symptoms may return.

Where can I find support and more information?

Having TN can be hard for you and your family. You and your family may feel scared and worried about your pain. It is common to feel depressed when you have TN. Talk with your caregiver about your feelings. You may want to join a support group with other people who have TN. You can also contact the following:

• American Chronic Pain Association
  PO Box 850
  Rocklin , CA 95677
  Phone: 1- 800 - 533-3231
  Web Address: http://www.theacpa.org
  

• Trigeminal Neuralgia Association
  2801 SW Archer Road
  Gainesville , FL 32608
  Phone: 1- 800 - 923-3608
  Web Address: www.tna-support.org
  

When should I call my caregiver?

Call your caregiver if:

• The medicines you are taking are not decreasing your TN pain.
  
  
• You feel worried and depressed and find it hard to do your daily activities, such as going to work.
  
  
• You have headaches, mouth sores, an upset stomach, or diarrhea that does not go away.
  
  
• Your TN pain feels worse, different, or moves to another area of your face.

When should I seek immediate help?

Seek care immediately or call 911 if:

• You have a fever, stiff neck, or you develop a skin rash or peeling skin.
  
  
• You have clear or yellow fluid leaking from your procedure or surgery site.
  
  
• You are feeling so depressed you want to harm yourself.
  
  
• You are confused and cannot think clearly.
  
  
• You are not eating or drinking, and you are losing weight.
  
  
• You have eye pain, eye numbness, or sudden vision or hearing changes.
  
  
• You have sudden dizziness, problems with movement, weakness, or numbness in your face.

Care Agreement

You have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your caregivers to decide what care you want to receive. You always have the right to refuse treatment.

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The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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