Trigeminal neuralgia (TN), also known as tic douloureux and the “suicide disease," is sometimes described as the most excruciating pain known to humanity. Trigeminal Neuralgia is a form of neuropathic pain (pain associated with nerve injury or nerve lesion.) The typical or "classic" form of the disorder (called "Type 1" or TN1) causes extreme, sporadic, sudden burning or shock-like facial pain that lasts anywhere from a few seconds to as long as days per episode. The “atypical” form of the disorder (called "Type 2" or TN2), is characterized by constant aching, burning, stabbing pain. The teeth are affected in both 1 and 2 and often feel like they are being electrocuted or breaking. The muscles on the affected side waiver from being torn off of the face to severe constriction. When the area around the eye is in pain, it often feels like the patient cannot open the eye or the eye itself feels like it is being pushed out of the socket.
Both forms of pain may occur in the same person, sometimes at the same time. The intensity of pain can be physically and mentally incapacitating. The trigeminal nerve is one of 12 pairs of nerves that are attached to the brain. The nerve has three branches that conduct sensations from the upper, middle, and lower portions of the face, as well as the oral cavity, to the brain. The ophthalmic, or upper, branch supplies sensation to most of the scalp, forehead, and front of the head. The maxillary, or middle, branch stimulates the cheek, upper jaw, top lip, teeth and gums, and to the side of the nose. The mandibular, or lower, branch supplies nerves to the lower jaw, teeth and gums, and bottom lip. More than one nerve branch can be affected by the disorder. Rarely, both sides of the face may be affected at different times in an individual, or even more rarely at the same time (called bilateral TN).
What are the symptoms of trigeminal neuralgia?
Pain varies, depending on the type of Trigeminal Neuralgia, and may range from sudden, severe, and stabbing to a more constant, aching, burning sensation. The intense flashes of pain can be triggered by vibration or contact with the cheek (such as when shaving, washing the face, or applying makeup), brushing teeth, eating, drinking, talking, or being exposed to the wind.
Trigeminal Neuralgia attacks often worsen over time, with fewer and shorter tolerable-pain periods before severe attacks recur. Eventually, the tolerable pain intervals disappear and medications, if they even worked, becomes less effective. The disorder is debilitating. Due to the intensity of the pain, many individuals avoid daily activities and social contacts because the intensity of the pain is so unpredictable.
There is no cure.*
*While MVD (microvascular decompression) may be an option for some patients, it's not guaranteed to work. Some who experience less pain or no pain post-op often regain the symptoms of Trigeminal Neuralgia within a few years. Some choose to have the MVD done again.
**I am not a doctor but I'm going by story's of patient with Trigeminal Neuralgia.
Anesthesia dolorosa (AD) is a feeling of pain in an area that is completely numb to the touch. “Anesthesia dolorosa” literally means “painful numbness”. Numbness describes a loss of sensation or feeling in a part of your body, but it is often accompanied by or combined with other changes in sensation.
AD causes pain in one or more areas of the face which are completely numb to touch. The pain is described as constant, burning, aching, squeezing, heaviness, tightness, pressure or likened to pins and needles. The primary pain is usually continuous or near-continuous. One may also experience electrocution sensations and pain around the eye as if it is being forced out of the socket. Diagnosis is generally based on the description of symptoms.
AD occurs when the trigeminal nerve is damaged so that the sense of touch is diminished or eliminated while a malfunctioning sensation of pain is left intact. AD is caused by nerve damage, either from an underlying condition, traumatic injury as in during brain surgery, or from past treatment of the Trigeminal nerves. AD is referred to as a deafferentation pain syndrome, meaning that it results from complete or partial interruption of nerve impulses.
Anesthesia dolorosa is disabling, is often worse than Trigeminal Neuralgia, and is incurable. It is so rare that the exact number of cases is unknown. Many individuals with AD avoid daily activities and social contacts because the intensity of the pain is so unpredictable.
On Trigeminal Neuralgia Awareness Day 2022, my friend and actress Judy Greer and I discuss my conditions Trigeminal Neuralgia and Anesthesia Dolorosa.
Occipital neuralgia is a distinct type of headache characterized by piercing, throbbing, or electric-shock-like chronic pain in the upper neck, back of the head, and behind the ears, usually on one side of the head. Typically, the pain of occipital neuralgia begins in the neck and then spreads upwards. Some individuals will also experience pain in the scalp, forehead, and behind the eyes. Their scalp may also be tender to the touch, and their eyes especially sensitive to light. The location of pain is related to the areas supplied by the greater and lesser occipital nerves, which run from the area where the spinal column meets the neck, up to the scalp at the back of the head. The pain is caused by irritation or injury to the nerves, which can be the result of trauma to the back of the head, pinching of the nerves by overly tight neck muscles, compression of the nerve as it leaves the spine due to osteoarthritis, or tumors or other types of lesions in the neck. Localized inflammation or infection, gout, diabetes, blood vessel inflammation (vasculitis), and frequent lengthy periods of keeping the head in a downward and forward position are also associated with occipital neuralgia. In many cases, however, no cause can be found. A positive response (relief from pain) after an anesthetic nerve block will confirm the diagnosis.
My friend Jason Thompson, Billy and The Young and The Restless, was kind enough to host me to help me raise awareness about the rare conditions I live with -- Trigeminal Neuralgia 1 and 2 plus Anesthesia Dolorosa.
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