Rare Symptoms of MS: 12 Things to Know About Trigeminal Neuralgia

Trigeminal neuralgia is a term used for facial pain which begins in the trigeminal nerve. It usually occurs in people over the age of 50 and affects women more than men. However, it is more common in people who have multiple sclerosis (MS).

We’ve put together a list of facts about trigeminal neuralgia with help from familydoctor.org and the MS Trust UK.

MORE: Seven strange and unusual multiple sclerosis symptoms

  • There are two trigeminal nerves running down each side of the face. Each trigeminal nerve has three main branches: the upper branch reaches to the scalp and forehead, the middle branch to the nose, cheek and upper jaw and mouth, and the lower branch reaches the lower jaw and mouth.
  • Damage to the myelin sheath protecting the nerve is what causes pain for MS sufferers.
  • Pain may be triggered by everyday activities such as eating, brushing teeth, talking, head movement, breeze, air conditioning, hot or cold food, or may come up spontaneously without any trigger.
  • Pain can last for a few seconds or up to a few minutes. For some, the pain is constant.
  • Some report pain like an electric shock, whereas others report an aching or burning sensation.
  • The pain can range from mild to excruciating.
  • Flares can last for hours, days, or even months.
  • Dental pain or eye pain can sometimes be mistaken for trigeminal neuralgia, so if you experience pain in your mouth or eyes it’s wise to visit your dentist or ophthalmologist.
  • Over-the-counter pain medications are not effective for trigeminal neuralgia pain.
  • Trigeminal neuralgia is often treated with carbamazepine to begin with. Baclofen may be given to help relax the muscles.
  • If medication doesn’t work, surgery may be required to deliberately injure the trigeminal nerve so that it stops sending pain signals.
  • It’s estimated that between four and six people living with MS will suffer from trigeminal neuralgia. Usually, they’re over the age of 40.

MORE: Tips for managing cognitive health with multiple sclerosis.

Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

17 comments

  1. Jerry Cornwell says:

    I have found that chewing gum provides some relief from trigeminal neuralgia. When I have a recurrence of TN I start chewing sugarless gum and (with luck) the pain recedes after a few minutes but I continue to chew for most of the day. It works for me hope it will for you, at least its inexpensive.

  2. Marie Evans says:

    Yes I have Trigeminal Neuralgia. I first had an occupancy when I was in a restaurant with my Sister it just came on so quickly and I had to get out of room it was excruciating thank goodness it didn’t last long but it still visits me 3/4 times a wk. I rub my gums with sensitive toothpaste. I was referred to L’pool hos for oral medicine. I was put on Carbimyzipine didn’t work for me got to a point I had to drink through a straw then was put on Gabapentin this was 4 yrs ago and now ime so pleased to say don’t get it now but instead I have end of tongue nerve pain quite bad, cold water eases it but keeps flaring up so in the process of seeing MS nurse to see what can be done ?

  3. Richard Parker says:

    I have had TN for approximately 3 years nefore the operation to correct it. There is a very good reason why physician’s call it the “Suicide Disease”.
    Anyone that has had it knows that you are not nearly describing it’s effects. Excrutiating, does not cover it. It xomes unexpectantly, and can omly be managed with pain, and seizure medicine for a time. Tou will need one of rhe operations to alleviate it. That’s a fact.
    When the pain happens, it is lightning fast, intense, makes you drop what ever you are doing, and drool, scared to take another breath, or swallow. The medicine is Tegretol. I was drinking it right from the bottle, before the operation, kust to avoid an occurence of the pain, if you can call it that. More like an electrocution, in the area, for me, it was the upper teeth on one side. A LOT more needs to be said on this. Do your research on this, and get one of the highly successful operations. I had a Percutaneous Balloon Rhitzotomy. Problem gone, which was a bloid vessel touching and pulsating on the trigeminal nerve. I’d be flad to tell more of MY story if any one is interested. Don’t delay on fixing this problem. Find an excellent Brain Surgeon, and procedure with above 90% success rate.

    • Beverly L Miller says:

      I am so glad your surgery was a success. I had microvascular decompression surgery. The surgeon was “supposed” to be one of the best brain surgeons. However, look up the term “anesthesia dolorosa”. It is called the neurosurgeon’s nightmare. When there is a so-called problem caused by the surgeon, you wake up with a WORSE problem than when you first began. I WANTED the MVD because the pain was so bad. Seven years later I only wish I had known what this surgeon would do to me. In addition to the pain, the numbing of the mouth includes my throat. Have choked many times. When you are screaming in pain, you are willing to do most anything – that is what I did. Anesthesia Dolorosa is very rare. I was sent to Duke Medical Center in North Carolina to see if they could “undo” some of the problems caused by the first procedure. Unable to help, and they are the best. Any comments appreciated about living with Anesthesia Dolorosa. Aside from the pain, the depression it causes is the worst!

    • Rose Browne says:

      I had a Rhyzotomy it at Mass General in Boston and you’re right it has been fantastic. No pain since and believe me I know what you mean about the pain. I was on the floor crying more than once. So now here’s to the success rate. I have had MS since 2009

  4. Beth says:

    I get the pain mostly on the right side of my face at night when I’m sleeping with my head on the right side. It is very painful but will go if I sit up for a while or turn my head.
    I thought I had an ear infection before diagnosis.

  5. Robyn says:

    “Tic douloureux” French for Suicide Disease as anyone with full blown TN will attest – the pain is unbearable! My neuro has me on Neurontin to control the pain. I asked why he had me on this rather than carbamazepine and he advised me that carbamazepine affects the liver. Using Neurontin also allows me to keep 100 mg. capsules on hand for times when the pain breaks through my maintenance dose of 600 mg. 3x/day. One can take up to 3600 mg. daily if necessary but must be titrated up, so use caution when starting or stopping.

    Do note that my dentist had NO clue why I was complaining about such terrible pain and once I had dx’d myself, I learned that most dentists don’t have a clue about Trigeminal Neuralgia. Shameful!

    As the nerves we don’t want firing such as the trigeminal nerve somehow often find ways to regenerate, I’m not rushing to surgery anytime soon.

  6. Mike W says:

    Yes, I had a flare-up about 2 weeks ago. Mainly on the right side and my scalp gets very sensitive to touch. Lasted 3 days and feels like being stabbed with an ice pick hooked up to electricity.

  7. Becky Brown says:

    Thursday morning out of the blue I had jaw and teeth pain couldn’t figure it out thought I had something wrong with my teeth was going to call my dentist. But I waited took some ibuprofen it didn’t help so I took some Topiramate and it helped a little tiny bit. Talk to my husband when I got home and he said to look up trigeminal neuralgia. Looked it up and lo and behold people with MS have that symptom also. Called my doctor on Friday explain my symptoms by this time it was from the top of my head to my throat behind my ear in my ear my cheek my nose my temple both upper and lower teeth and my jaw. They called in a prescription of Gabapentin right away told me to take it as soon as I got it and I did. They said one pill at night for a week and if it doesn’t get better start on two pills a day. As impatient as I am and the pain was so awful I took two the next day one in the morning and 8 hours later I took one in the evening. And that helped the funny thing is is it lets me sleep at night with no pain this morning I woke up I had soreness all over my the right side of my face but no pain until I ate something then the pain started again it said hello I reared its ugly head and said I’m still here. So I just took a Gabapentin but I hadn’t taken one since three yesterday afternoon. I never knew that trigeminal neuralgia existed with Ms patients I never heard of it before until my husband suggested it. He’s more on top Ms than I am.

  8. Irene says:

    Its irene again. In south africa our doctors get very upset if we suggest it maybe a disease that you read about and therefore became aware. They feel you telling them their jobs, so its not easy for me, right now, so il appreciate any feedback.

  9. Colette says:

    The pain of trigeminal neuralgia is the worst pain I have ever experienced. At first I thought it was a sinus infection. Then I thought I had rotten teeth. All left side. Even the roof of my mouth was numb. All I can say is this is the most excruciating pain I have ever encountered. Taking a steroid therapy at this time. Carbamazepine I see is not a good option since it elevates the liver enzymes. I’m currently on Aubagio. The liver values are high with this medicine and now I have to find another. There are no terms to describe the pain of trigemenial.

    • Gayle says:

      Collette, you have the same problems that I do, I am now taking Gabapentin and it helps greatly. Have had 2 Gamma Knife treatments and 1 Thermal Rhizotomy that has done little to help and made the entire right side of my face numb. I still get flare ups almost daily and take Tramadol to keep them at a manageable level. I also have MS and take Aubagio for that.

  10. LOIS MATTHEWS COLETTI says:

    I have been suffering from this on and off for about a decade. I have had two glycerol rhizotomies, the second of which caused extensive numbness. Since then when it has flared up, I’ve used first tegretol, but that became ineffective with time, then gabapentin with lamotrigine. My pain management specialist did a SPG nerve block and later an ablation. But no long term relief. In fact I had the ablation again and I have the worst pain ever with only minor relief from meds. I’m going to ask for a FIESTA MRI to see if I have the problem of an blood vessel wrapped around the trigeminal nerve. I’ll see what the doctor says. See him on Weds. this week (Dec. 13, 2017).

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