According to the National Institute of Neurological Disorders and Stroke, trigeminal neuralgia is a painful condition that affects about 12 new people out of every 100,000 members of the population each year. In total, this means this disorder afflicts more than 10,000 people in the United States. Here are the things you need to know about it.
What Is Trigeminal Neuralgia?
Trigeminal neuralgia – or, more rarely, tic douloureux – is a neuropathic pain condition that affects the trigeminal nerve. There are two main forms of this condition.
The most common form, known as “Type 1,” “TN1,” or “Classic” trigeminal neuralgia, is characterized by extreme but sporadic facial pain. The pain can last for several seconds to several minutes in each ‘episode,’ and attacks often occur in quick succession for up to two hours. It’s often described as feeling like sudden burns or shocks.
The rarer form, known as “Type 2,” “TN2,” or the “Atypical” form, involves a constant ache of lower intensity than the classic form. It’s possible to have both forms of trigeminal neuralgia, and they may occur at the same time.
What Causes Trigeminal Neuralgia?
This disorder has several different causes. The most common source is thought to be from blood vessels pressing on the trigeminal nerve, usually where it exits the brain stem. Over time, this can wear away the myelin sheath around the nerve, exposing it to frequent triggers. However, there is not much known as to why these blood vessels do this.
Other potential causes include:
- Multiple sclerosis (which can also wear down the myelin sheath around the nerve)
- Nerve compression caused by tumors
- Malformation of arteries and veins
- Injury to the trigeminal nerve (from surgery in the area, trauma, stroke, etc.)
- Often people have experienced a trauma, like whiplash, to their head and neck in the past
Once trigeminal neuralgia has developed, many things can trigger bouts of pain. Common triggers involve stimulation of the nerve, such as from:
- Contact with the cheek
- Brushing teeth
- Exposure to wind
- Anything else that causes the nerve to react
What Are The Symptoms Of Trigeminal Neuralgia?
Trigeminal neuralgia symptoms feature severe pain, as described above. The pain usually stops for a variable period, then returns.
This disorder is progressive and usually gets worse over time if not treated. While the pain itself may not increase, periods without pain often become shorter and less frequent. If trigeminal neuralgia continues to progress, it may reach a stage where there are no periods without pain. At this point, the condition is often debilitating, but not fatal. Most doctors suggest having treatment long before this stage is reached.
Who Can Develop Trigeminal Neuralgia?
This condition is most common in older people, especially those past age 50. However, it can occur at any age. Multiple sclerosis often causes cases in younger people.
Additionally, women are more likely to develop this condition than men. We do not know why this is the case, but some researchers believe that estrogen (the primary female sex hormone) may play a role. Treatments involving various kinds of estrogen therapy – or modifying how estrogen affects nerves – are currently being studied. These studies may or may not lead to new treatments, so you should not delay your treatment in the hope of finding an alternative.
How Is Trigeminal Neuralgia Commonly Treated?
This condition is treated in several ways.
In early stages, medication is often used to prevent nerve firings and reduce incidents of pain. This is more effective on the classic form of the disorder since the atypical form is more resistant to medication. On occasion, doctors may also prescribe tricyclic antidepressants for pain relief. Opioids are not effective on most cases of trigeminal neuralgia, but some people with the atypical form do respond to them.
However, due to the progressive nature of this condition, many people eventually seek surgery for their trigeminal neuralgia treatment. The exact form of surgery needed for a given case can only be determined by a doctor able to locate the source and reason for the condition.
That said, one of the most common surgical options here is rhizotomy, a procedure where nerves are deliberately damaged to block pain. Unfortunately, this cannot be done without also stopping the nerve’s other functions, so rhizotomy always includes general sensory loss and numbness in the area affected.
All forms of surgery are more effective on classic trigeminal neuralgia than the atypical form.
There are several common rhizotomy procedures that your doctor may recommend, including:
This procedure involves inserting a catheter with a balloon tip, then inflating it to squeeze the nerve against the brain’s covering. This is most effective when the nerves fire from light sensations on the face, and it can be done as an outpatient procedure using general anesthesia. The procedure only takes a few minutes. Somewhat unfortunately, this procedure only tends to relieve pain for up to 24 months and may need to be repeated over time.
The second procedure involves injecting the ganglion and trigeminal nerves with a special fluid to damage them and reduce the occurrence of pain. The liquid used is heavier than spinal fluid, so it remains in place for some time. Like balloon compression, glycerol injection only provides pain relief for a year or two as the body naturally heals the damage – but this procedure is relatively safe to repeat.
Radiofrequency Thermal Lesioning
This is one of the more complicated procedures and involves waking up in the middle of the procedure to locate the area of pain. Once the patient is awake, an electrode is used to damage the nerve fibers. It’s possible to achieve different levels of sensory loss using this procedure, with the preferred level usually being a loss of sharp sensations (like pain) while still being able to feel lighter touches.
About half of all people who undergo this procedure have their pain return within 4 years. Increasing the damage to the nerves can prolong pain relief, but comes with the potential for other medical problems.
This procedure uses computer-directed radiation to induce a lesion on the nerve. Pain relief usually takes several weeks to several months and is often described positively while it lasts. Like radiofrequency thermal lesioning, about half of all patients will have their pain return within 3-4 years of the original procedure.
Given the delayed onset of relief, it’s best to think of this procedure as offering, on average, about two and a half years of pain relief.
The most common rhizotomy procedure is also the most invasive. In this procedure, the surgeon locates the area compressing the nerve and moves the obstruction (typically a blood vessel) away. After that, a tiny cushion is put into place between the nerve and whatever was pressing against it.
Half of the patients who undergo this procedure will have pain return in 12 to 15 years, usually when the cushion wears out and can no longer protect the nerve. Recovery time is also longer, usually featuring several days in the hospital and several weeks outside of it. Even so, the long-term relief makes this a more attractive option for many people.
Are There Any Other Treatments?
Yes. According to the Facial Pain Association, many people report improvement in their pain levels from a special non-invasive procedure practiced by a small percentage of chiropractors. The degree of relief varies case by case, but some people report complete and long-term relief from TN pain. Many patients prefer to try this approach before surgery due to its record of effectiveness and its low risk.
Regarding surgical alternatives, most rhizotomy procedures are designed to treat blood vessels pressing against the nerve. However, some cases of trigeminal neuralgia have other causes, so those procedures will be ineffective.
In these cases, a partial nerve section – also known as a neurectomy – may be used. This procedure outright cuts the nerve (usually close to its entrance point by the brain stem) to deaden the area and create long-lasting numbness. Like rhizotomy procedures, however, nerves regrow and the pain may eventually return.
Aside from medical options, many people choose to try and improve their diets and lifestyles. Constant, chronic pain can be extremely isolating, so counseling or psychiatric therapy may be needed. However, it’s important to remember that trigeminal neuralgia is a physical condition, so the pain must be treated.
Are There Any Problems To Be Aware Of When Seeking Treatment?
Yes. Some treatments, including neurectomies and some forms of rhizotomy, can lead to the development of anesthesia dolorosa. Essentially, this condition is all of the bad traits of trigeminal neuralgia with none of the good, since the affected area is both numbed and painful.
The pain of this condition is usually described as a constant feeling of stabbing, pulling, or burning, but in rare cases may also feel electrical or stinging. Eye pain also tends to develop.
There are no effective standard medical treatments for anesthesia dolorosa. Most people who develop this condition use a pain management approach that involves various pharmaceuticals, counseling, alternative therapies, and lifestyle modifications.
Before choosing any surgical approach for trigeminal neuralgia, talk to your doctor and ask them to look into the risks of each procedure. Some rhizotomies are significantly safer than others, and ultimately, you will need to decide how much risk you’re willing to tolerate.
It’s worth noting that microvascular decompression – the most common surgical treatment for trigeminal neuralgia – involves the least damage to your nerves and is accordingly less likely to cause anesthesia dolorosa. Radiofrequency lesioning, on the other hand, seems to cause it at a more frequent rate than other procedures.