If you’ve been diagnosed with trigeminal neuralgia (TN) along with multiple sclerosis (MS), you aren’t alone. Both conditions are related to demyelination — damage to the protective coating (myelin) that covers nerve fibers.
Because TN can cause significant chronic pain and impairment in daily life, especially when added to the symptoms of MS, it’s important to find a way to manage it well.
Here is what you need to know to understand TN, including what it is, why it occurs, and how it can be managed. Working with your neurologist or health care team can help you maintain your quality of life and well-being while living with TN and MS.
Trigeminal neuralgia is a nerve disorder that causes significant pain in the face. Often, the pain is severe enough to interfere with daily activities. TN occurs when there is pressure on or damage to the trigeminal nerve, which has branches throughout the face. TN usually occurs on one side of the face, though it can affect both sides.
Some people experience short bouts of intense facial pain with TN. These can last from a few seconds to several minutes. They may also repeat for up to several hours or be relapsing (come and go) over time. Others experience less severe pain, but the pain lasts longer and may be spread throughout the face.
TN is more common in people who have been diagnosed with MS than those who have not. Between 4 percent and 6 percent of people diagnosed with MS will also be diagnosed with TN, which makes it 400 times more common in the MS population than in the general population. Occasionally, TN is diagnosed before MS. In fact, up to 15 percent of people diagnosed with TN go on to be diagnosed with MS as well.
Different studies report varying outcomes when it comes to the prevalence of TN with MS. Despite these differences, there does appear to be a connection between TN and MS.
Many MyMSTeam members have shared that they have TN along with MS.
TN can cause significant amounts of pain, and it can be difficult to manage. As one member wrote, “I was diagnosed with trigeminal neuralgia in August, and it is truly the worst pain I have ever experienced. It feels like I have a major earache and cavities in all the teeth on the left side of my mouth. I was put on medication for it, but when it’s bad, nothing helps … just wondering if anyone has any tips for dealing with it.” Another member said, “To me, it felt like an electrical shock to the face.”
In some cases, when the trigeminal nerve is excessively damaged, people may need surgery to be able to breathe properly. “I have a bad case of trigeminal neuralgia,” wrote one member. “It destroyed some nasal tissue and resulted in me having to get my left nostril reconstructed by an ENT facial plastic surgeon at the Mayo Clinic. It collapsed enough of my nostril that I couldn’t breathe. But the eight-hour surgery restored my breathing.” Another member echoed this experience, adding, “It’s pulled my nostril out of line and has destroyed enough tissue/cartilage that I had to have my nostril rebuilt.”
TN can sometimes cause other symptoms. As one member explained, “I was diagnosed with trigeminal neuralgia years ago, and the left side of my face is droopy and numb. I also have teeth/jaw aches. Some days, it feels as if my teeth are going to fall out of my head. They feel so loose.”
In people with MS, TN is most often connected to demyelination, which can cause lesions to form on or near the nerve fibers in the trigeminal nerve. These lesions could be seen on MRI scans of 63 percent of people with both TN and MS. It’s important to note, however, that lesions cannot always be seen on MRI scans.
More research is needed to determine whether lesions in the trigeminal nerve actually precede an MS diagnosis, as well as what causes TN in people with MS who do not have visible lesions near the trigeminal nerve.
In people who have not been diagnosed with MS, TN most frequently occurs when a blood vessel exerts pressure on the trigeminal nerve, causing it to become compressed. This is known as microvascular decompression. Since this can also occur in people with MS, it’s important to determine the cause of your TN. The cause will influence the treatment your doctor recommends.
There are a number of methods available for the treatment of TN. It’s important that you work closely with your neurologist or neurology team to find the treatment that is best for you. Your health care provider will be able to help you manage your pain while making sure that your TN treatment options don’t interfere with your MS treatments.
Your doctor may recommend over-the-counter (OTC) or prescription pain relief medications to help manage pain associated with TN. One member shared that they used a topical pain reliever to help manage TN pain: “I had a prescription for Voltaren gel, which is now OTC. I put it along my left cheekbone; it seemed to help.”
In most cases, TN requires treatment beyond pain relievers. Your doctor may prescribe medications for treating nerve pain. These include carbamazepine (Tegretol), gabapentin (Neurontin), oxcarbazepine (Trileptal), pregabalin (Lyrica), and lamotrigine (Lamictal). Sometimes, doctors will add a muscle relaxant called baclofen to these medications to boost their effectiveness.
Several MyMSTeam members have had success with these medications. “What helps me is Tegretol,” wrote one member. Another added, “Trileptal has helped me. However, if you stop taking it, the pain returns within a day.”
Note that these medications are not always tolerated well, especially by people with MS. These medications can cause drowsiness and impact a person’s motor (movement) skills. This can have a negative impact on quality of life and may make TN harder to treat in people with MS than in the general population.
Many surgical procedures are available to help improve TN, either permanently or temporarily. The neurosurgery procedures available for you will depend on many factors, including the cause of your TN and the treatments you take for MS.
One of the most common TN treatments for people with MS is gamma knife radiation, also known as gamma knife radiosurgery. In this procedure, a needle applies radiation directly to the trigeminal nerve to destroy or incapacitate part of it. Overall, this procedure is safe and effective for people with MS, though the pain control does not last long-term for everyone.
Microvascular decompression (the Jannetta procedure) is a surgical procedure for people whose TN is caused by a blood vessel compressing the trigeminal nerve. In this surgery, a small amount of padding is placed between the blood vessel and the trigeminal nerve, relieving the compression.
You and your doctor can discuss your surgical options and choose one that has the highest probability of working for you.
People with both TN and MS are more likely to experience anxiety and depression, and the pain from TN may be part of the cause of this. The pain itself — as well as the fear of experiencing pain in the future — can add to emotional distress.
Working with a psychotherapist trained in helping people dealing with chronic pain can make a big difference, especially if you’re struggling with managing the pain or with the way it interferes with your life.
If you are living with MS, consider joining MyMSTeam today. Here, you can ask questions, offer support and advice, and connect with nearly 185,000 members from around the world who understand life with multiple sclerosis.
Have you been diagnosed with trigeminal neuralgia alongside multiple sclerosis? How have you managed it? Share your story or thoughts in the comments below or by posting on MyMSTeam.