While the pain of childbirth may be thought of as the most painful medical condition, there is another that is much worse. Suffers believe it is the worst pain ever inflicted on a human being, it’s incurable, and it’s so bad that the very rare neurological condition is nicknamed the “suicide disease” — it’s called trigeminal neuralgia.
What is trigeminal neuralgia?
Trigeminal neuralgia (TN or TGN), also known as tic douloureux, was once labeled the “suicide disease” because of the significant numbers of people taking their own lives before effective treatments were discovered. The disease entity of trigeminal neuralgia has been known now for centuries.
The condition is a chronic pain disorder that affects the trigeminal nerve. This nerve supplies the face, teeth, mouth, and nasal cavity with feeling, and also enables the mouth muscles to chew. The fifth cranial nerve gives sensation to almost the entire face, explaining why the disorder can cause pain in different areas of the face.
Kim Burchiel, M.D., professor and chairman of neurological surgery at the Oregon Health & Science University School of Medicine who sees several new TN cases a week, said:
“People with the condition ‘are begging to be killed’; I’m telling you, its total agony.’
There are two main types: typical and atypical trigeminal neuralgia. The typical form results in episodes of severe, sudden pain, and has been likened to having an electric shock in the jaw, teeth, or gums in one side of the face that lasts for from seconds to a few minutes.
Groups of these episodes can occur over a few hours, and the attacks stop as suddenly as they start. The atypical form results in a constant burning pain, which is less severe.
Typically, the attacks of pain are brought on by activities that involve lightly touching the face, such as washing, eating, and brushing the teeth. However, it can also be triggered by wind — even a slight breeze or air conditioning — or movement of the face or head. Sometimes, the pain can occur without any trigger at all.
The first episodes are usually fairly mild and brief. It may take minutes, hours, or even weeks before the next attack. However, attacks tend to occur in groups that may last for weeks at a time. As you age, the episodes become more frequent and painful until you begin to live in constant fear of the next one.
While it’s not considered a fatal disease, it must be rembered that many who suffer from this condition have attempted or sadly committed suicide. James Kirkpatrick of Vancouver, who suffers from the disease, explains:
“If I lightly touch my eyebrow, it feels like I stuck my finger in an electrical outlet. I’ll go outside and the breeze hits my face, and it feels like the most intense toothache I’ve ever had in my life. It drops me to my knees almost.
“I can totally understand why they call it the suicide disease. It affects so many aspects of your life.”
It is not easy to treat trigeminal neuralgia. Pain can be suppressed by a range of medicines, including the anti-epilepsy medicines carbamazepine (Tegretol) and phenytoin (Dilantin). These drugs slow down the nerve signals at certain nerve terminals, which eases the pain. However, these drugs cause a wide range of side effects, including nausea, dizziness, drowsiness, liver problems, and skin allergies.
Some people develop resistance to the drugs or they can’t tolerate the high dosage needed to control the discomfort. If the medicines are stopped, the pain usually returns.
An estimated 1 in 15,000 people suffers from trigeminal neuralgia, although numbers may be significantly higher due to frequent misdiagnoses. Trigeminal neuralgia is relatively rare. An estimated 45,000 people in the United States and an estimated 1 million people worldwide suffer from trigeminal neuralgia.
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