Need to Know: Why Do I Have Facial Pain?
Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum.
This week’s question is inspired by the forum topic “What is Trigeminal Neuralgia?” from May 2, 2018.
What causes facial pain in MS?
Trigeminal neuralgia (TN) is a facial paroxysmal (spasming) pain caused by demyelination of the trigeminal nerves.
There are two trigeminal nerves, one along each side of the face. Each nerve has three branches: the upper branch reaches to the scalp and forehead; the middle to the nose, cheek, and upper jaw; and the lower to the lower jaw and mouth. Patients often describe TN pain as experienced on one or both sides of the face.
Hot or cold food or drinks can trigger pain, as can teeth brushing, eating, or talking. Many compare the sensation to an electric shock, an aching, or burning can last from a few seconds or minutes or be present continuously.
This painful condition can severely disrupt your life, affecting work abilities or leisure activity participation. Unsurprisingly, it can lead to negative mood and so-called “suicide pain.”
Discuss the latest research in the MS News Today forums!
It’s difficult to treat and over-the-counter pain-relieving medications are rarely effective at easing the pain of TN.
Treating TN
TN symptoms may mimic other facial pain problems related to the teeth, ears, or eyes. Your doctor will want to rule out these causes before exploring TN treatment options.
Self-help for TN
Those with milder cases of TN may find the problem resolves when they avoid triggers. Adjusting eating habits, choosing soft foods, using a straw, and ensuring food and drinks are at room temperature before consumption can help.
Studies have found acupuncture to be beneficial in treating TN pain. Consulting a cognitive behavioral therapist to manage the pain may be worthwhile.
Medications for TN
Doctors typically treat pain triggered by TN with prescription medications such as:
- carbamazepine
- oxcarbazepine
- baclofen (alone, or in combination with other therapies such as gabapentin, pregabalin, or lamotrigine)
However, TN medications can have adverse side effects.
Surgery for TN
In chronic and severe TN, surgical procedures are used to disrupt the pain signaling of trigeminal nerves. The MS Trust website (U.K.) describes surgical procedures that might relieve TN:
- Percutaneous procedures, which are surgically invasive, requiring heavy sedation or general anesthetic:
- glycerol injections
- gamma knife or radio frequency lesioning
- balloon compression (PBC)
- botulinum toxin (Botox) injections
- Stereotactic radiosurgery: a noninvasive procedure which aims a radioactive beam toward the trigeminal nerve to block it from sending pain signals.
- Microvascular decompression: major brain surgery where the skull is opened up to move blood vessels pinching the trigeminal nerve.
Recent research findings: TN and MS
Percutaneous balloon compression study
This February, researchers examined the effectiveness of percutaneous balloon compression (PBC) in a surgical series of 82 patients, of which 16 were people with MS. The researchers used MRI to identify the lesions responsible while studying the effect PBC therapy had on pain relief and long-term “pain survival.”
Fifteen of the 16 subjects with MS reported relief with PBC. The clinicians found that 12 of the MS patients in the study had an “excellent” outcome, while four had “good” outcomes.
TN diagnostic and treatment survey
A research paper published in The Journal of Headache and Pain reviewed current evidence and options for TN secondary to MS. The authors concluded that current medications had tolerability issues. However, a new treatment in development shows promise.
The authors of the review also identified a need for further studies to assess the use of the microvascular decompression technique for treating TN, particularly in relation to trigeminal anatomical abnormalities. Meanwhile, their survey of percutaneous procedures and stereotactic radiosurgery showed mixed results for effective pain relief within the context of complications and pain recurrence.
In another study, researchers found that lesions on the pontine trigeminal root entry zone may be the source for neurovascular compression that causes severe facial paroxysmal pain.
Do you experience facial pain? What has helped you to deal with your trigeminal neuralgia? Reply in the comments below or at the original “What is Trigeminal Neuralgia?” forum entry.
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Comments
Leanne Broughton
I have had TN on and off for approx. 14 years. I have been diagnosed with MS for 21 years. I did not know what this excruciating pain was for 4-5 years. My dentist did a root canal, then subsequent years their was much whispering and ineffective suggestions when the pain continued. The dentists knew, but did not inform me, of trigeminal neuralgia. Therefore the pain continued. I couldn't eat, drink, brush my teeth, or wash my face. I visited ER once, but given T#3 or stronger, which did not work. It was a long wait, 14 months to see a neurosurgeon. He did a rhizotomy to my nerve in my Rt lower jaw in 2011 and then in 2012. I was good for about 5 years but now have episodes of Rt facial pain for 2-3 days every few months. I notice the pain starts when the weather is colder, rather when it is warm. I now use gabapentin if the pain is troublesome - a low dose as I hate feeling out of it. Good luck to anyone who suffers with this. Knowledge helps.
Tamara Sellman
Leanne, knowledge helps, indeed! And knowledge empowers us as patients. Thank goodness for MS communities where we can share our experiences because, as your own first-hand experience shows, even the most caring, motivated healthcare providers might miss these opportunities to help us. So sorry you had to wait for so long, and endure so much pain and these invasive procedures, in order to find some relief. Your story will definitely help others. Best of luck to you!
Tamara
RG
I had to self diagnose TN as my dentist was clueless as to why I had excruciating pain. I think it's awful that so many dentists are unaware of TN, especially when treating MS patients. My neuro put me on 600 mg. gabapentin 3x/day to control the pain and I have 100 mg. capsules if there is breakthrough pain. My neuro told me that he prefers to use gabapentin as it does not carry a need to monitor liver function as carbamazepine does.
Tamara Sellman
I agree, RG, dentists should be trained to identify potential TN. They likely can't diagnose it but they can certainly refer their patients to neurologists for observation, diagnosis and treatment. Things are getting better in the field of dentistry... they are now far better equipped to identify sleep apnea, for instance, and that has made a world of distance. I do think they are expanding their roles in the lives of patients because they do tend to see them more frequently than some doctors, so they are an important part of that continuum of care. But they need training and awareness! Thanks for sharing your story!
Tamara
THERESA BRUNO
FOR NEARLY FOUR YEARS I HAD ACTIVE TRIGEMINAL NEURALGIA. GABAANTI, CARBENZIPINE. COXCARBENZEPINE, AND OTHER MEDECINES . GLYCEROL INJECTION 'DIDN'T WORK. NOW I AM ON A LIFESAVER....LAMICTAL (2OO MILIGRAMS) HAS GIVEN ME A LIFE AGAIN. THE PAIN IS GONE NOW FOR ALMOST 2 YEARS. I DON'T SUFFER SIDE EFFECTS. THE MEDICATION MUST BE TAKEN CORRECTLY SO AS IT REMAINS IN THE BLOOD STREAM. IT HASWORKED MIRACLES FOT ME. I WILL HAVE TO TAKE IT FOR LIFE WHICH IS A GOD SENT TO LIVE WITHOUT THE INCRUCIATING PAIN.
Tamara Sellman
Such a great success story, Theresa, thanks for sharing! It's always so beneficial to hear that people have found things that work for them, and that they are willing to share this information. Your post has probably inspired others to seek out these solutions, and quite possibly, they are poised to enter the pain-free realm again. Best wishes to you!~
Tamara
Elizabeth Owens
Very good reading, interesting and informative. Explain it very well, but we really don’t know what works.Hopfully soon we will have the answer.
Tamara Sellman
Thanks, Elizabeth! I think what works will vary just as much as our snowflake illness varies between each and every one of us. The key is to ask each other, try different things, until we can find relief (even if it's not permanent or a cure). I think it is fine, as human beings, to live with a little pain... but not so much when it robs us of our ability to function. I hope you find the solutions you need from the comments to this article!
Tamara
Katherine Kahn
Gabapentin (Neuronton) is my baseline relief and most of the time keeps me pain-free. Recently I had a terrible outbreak, and the following things gave me some relief: ice bag on my cheek, ice inside the mouth, deep breathing to try to stop my muscles from knotting from the pain, not eating, not talking, and doing something that I loved doing. I am an artist, and the "flow" that comes with making art was exceptionally helpful.
Tamara Sellman
Hi Katherine
Thank goodness for the simplicity and availability of ice! "Knotting muscles" is an apt description, by the way. I also agree, as a creative writer... having opportunities to do things that are immersive and meditative, like art, can be really great for taking the focus off of one's pain. It's not like it goes away, but it's one way to force it to the back seat. Best wishes,
Tamara
Vicki R Singleton
I have suffered from TN pain for 15+ years. I dealt with it at first by telling myself that it was going to “go away on its own”. When it didn’t go away after about a year, I knew that I could not live in the near constant pain that I was in. I slept as much as I could since that was the only time I wasn’t in pain. I started chewing ice with a vengeance since I discovered I could freeze the pain into temporarily subsiding. I actually considered suicide. Finally I switched neurologists and he started me on carbamazepine and I got the first real relief that I had experienced. My new neurologist started really working with me and looking for other medications that would help me. I quit my job as I couldn’t safely work or drive due to the drowsiness associated with most of the medications I was taking. Currently I am on carbamazepine, pregablin, duloxetine, fentanyl patch, and hydrocodone when needed. It sounds like (it IS) a lot of medication, but I still chew ice when I am awake and sleep as much as I can. I am medically retired and my husband is also retired. He does almost everything around the house and drives me everywhere as I no longer drive (per doctor’s orders).
Tamara Sellman
Hi Vicki
I deal with headache/migraine in the same way, just try to ignore it... until it doesn't, then I turn to some of the things that help me (caffeine, pressure, sleeping, cold liquids, medication when it gets super bad). It sounds like you are on a path that works for you, I hope readers will consider being proactive about their pain like you have. It makes a huge difference in quality of life!
Best,
Tamara
Jonathan Kimball
My wife has had PPMS for about 8 years. A little over 5 years ago, she started having debilitating facial pain. It was originally diagnosed as TN, and she had a glycerol rhizotomy when medications wouldn't help. However, it turned out NOT to be TN, so the glycerol rhizotomy didn't do anything. It is thought to be central pain that happens to manifest on the same neural pathway, perhaps caused by an MS lesion or other disease activity within the brain instead of on the peripheral trigeminal nerve.
After about 1.5-2 years of struggle, she finally got it under control with a combination of a TON of carbamazepine, a TON of topiramate, and some fluoxetine. Unfortunately, those have pretty severe side effects (mostly cognitive).
About six months ago, she started taking a probiotic daily. We can't explain it, but the probiotic seems to help. She has started cutting back on the carbamazepine. So far, so good, and her cognitive function is improving.
Tamara Sellman
Jonathan, thanks for sharing your wife's story, this is really useful to know given the complexity of MS as a neurological disease and the fact that so many symptoms may be caused by more than one aspect of the disorder. I'm sooooo glad she's found some relief, and while I don't know just how probiotic supplements work, they do seem to help keep my stomach issues at bay, so hey, all the more power to her. Really nice to hear she's had improvement in cognitive function, that's a big deal.
Best wishes!
Tamara
haslie kemp
Recently I had this pain and was treated twice with antibiotics for sinus infection. It did not go away until I was treated with IV steroids for a flare-up.
Tamara Sellman
Hi Haslie, Does your neurologist know about this potential "sinus infection?" Sounds like it might have been misdiagnosed by another MD, but who knows for sure? I'm no MD, but I do try to keep all of my docs on the same page so they can work together when something happens that might have an MS connection. It's so hard to know sometimes. Hope you're feeling better now,
Tamara
Jerry Mcclung
Mine was inactive the first 22 years of MS but have had off and on flares of this. Thanks to an educated dentist he picked this up right away. My chiropractor took care of it the next 3 years, Then I tried acupuncture which worked 1 year then baclofen and Gabapentin for 2years and carbamazazapine for 1 1/2 years. Have been on lamectal since.
Am not a candidate for the MVD surgery. I am 65 years old. So far it has been great. Hope it works for 20 more years.
smith patterson
There are of the common causes of facial pain are Headaches like migraines, cluster headaches and sinusitis. Temporomandibular joint disorders (TMJ) that cause pain and movement problems in the jaw joints and muscles. Dental problems or dental abscess (a pus buildup on the tissues of a tooth). Sialadenitis, a rare infection of the salivary glands. Consult your dentist for a check up