If you have multiple sclerosis, you’re no stranger to symptoms that can include sharp aches or pains in bones, joints and muscles; burning in the feet or hands; or a tightening around the waist. But you may not have anticipated one of the more disturbing problems: Approximately 2 percent of folks with MS feel pain in their face — a condition called trigeminal neuralgia.
Not everyone who has trigeminal neuralgia also suffers with multiple sclerosis. TN can be caused by other problems such as a blood vessel pressing on a nerve, a tumor, tangled arteries or an injury to a particular facial nerve. But if you have MS and suffer with TN, the problem is damaged myelin, the protective sheath (coating) around nerve cells in the central nervous system. MS is characterized by deterioration of myelin caused by inflammation and results in lesions (scars) forming around the brain and spinal cord. When someone with multiple sclerosis gets TN, it means the damaged myelin has formed lesions around the trigeminal nerve, which is responsible for carrying signals and sensations between the brain and face.
[See: 10 Seemingly Innocent Symptoms You Shouldn’t Ignore.]
“The trigeminal nerve is actually a pair of nerves. One runs along the left side of the face, and one extends along the right side. Each one of these nerves has three branches, which is why it’s called the trigeminal nerve,” explains Dr. Dhanashri Miskin, a neurologist at Lenox Hill Hospital in New York. “When it comes to MS, inflammation of the trigeminal nerve is responsible for the painful facial sensations — and the agony usually comes on fast and furiously. If left untreated, TN can be so torturous, there have been rare cases of people killing themselves because of the unbearable pain.”
But there may be more than only pain to the condition. Some scientists believe TN can be a red flag, pointing to a diagnosis of multiple sclerosis, especially if the individual is a middle-aged woman. A study reported in the 2016 issue of the International Journal of MS Care found that 18 percent of patients who were diagnosed with trigeminal neuralgia, mostly women, were also diagnosed with MS within the same year.
Not all medical experts are on the same page with these findings. Dr. Raymond Sekula, a neurosurgeon at UPMC in Pittsburgh, disagrees and says, “It’s rare that TN would present as the first symptom of MS. I’ve never seen it in my practice.”
But if you have MS and you’re experiencing facial pain, don’t hesitate to tell your doctor immediately. “Your physician will probably order an MRI,” Miskin says. (Magnetic resonance imaging is a test that uses a magnetic field and pulses of radio wave energy to make pictures of organs and structures inside the body.) “If the pain is being caused by TN, lesions will usually be seen in the brain, particularly in the area that carries messages from the trigeminal system,” she adds.
[See: 10 Lessons From Empowered Patients.]
Once the condition is diagnosed, a treatment plan will be devised to help you deal with the pain. Although there’s presently no cure for TN, there are methods that doctors hope can control extreme discomfort. “Treating TN depends on the underlying cause,” Sekula says. “If you treat a patient with steroids during an MS flare-up, it usually gets better because the underlying issue is inflammation. But if that doesn’t work, the gold standard treatment is carbamazepine, an anti-convulsive medication that’s more commonly used for epilepsy but calms shock-like nerve pain in the face of MS patients. On the downside, the drug has side effects, and one of the most common is blurred vision.” Others include fatigue and difficulty concentrating caused by low sodium.
“Another commonly used medication is baclofen, which relaxes muscles to help ease the pain. It’s sometimes prescribed together with carbamazepine,” Sekula says. “But again, there are side effects including drowsiness, dizziness and headache. Also, the drugs can become less effective the longer they are taken.”
The good news is that there’s hope on the horizon for better medication to target TN. In recent clinical trials, treatment with a compound called BIIBO74 is showing promise in reducing pain caused by trigeminal neuralgia with fewer side effects than other drugs, according to a 2017 report published in the journal the Lancet Neurology.
When medications are unable to control the pain of TN, surgery may be necessary. “But it should be a last resort,” Sekula says. “There are a few different procedures available. The most common one is microvascular decompression involving moving a blood vessel away from the trigeminal nerve. When there’s no longer anything pushing against the nerve, the pain may subside,” Sekula explains.
[See: 5 Rare Diseases You’ve Never Heard of (Until Now).]
“Other options are radiosurgery, which is less invasive and involves using radiation beams to block the nerve from sending out pain signals. There’s also a procedure where the medication glycerol is injected on the site in order to numb the nerve, as well as an operation where a catheter is used to inject a balloon to damage the nerve so it will no longer be able to send out pain signals,” Sekula says. “Unfortunately, none of these surgical options are guaranteed to be a permanent solution. They may last five years or only a few weeks or any period in between.”
Although there’s no cure yet for TN, Miskin says, “patients should see their specialist right away to learn about treatments, as well discuss other ways to cope.” Acupuncture, meditation and hypnosis have been shown to help relieve or lessen pain.
More from U.S. News
10 Lessons From Empowered Patients
10 Seemingly Innocent Symptoms You Shouldn’t Ignore
5 Rare Diseases You’ve Never Heard Of (Until Now)
What’s the Connection Between MS and Trigeminal Neuralgia? originally appeared on usnews.com
