What Is Trigeminal Neuralgia in MS All About, Anyway?

by Ed Tobias | February 11, 2022

My immediate thought after reading a recent MS News Today headline stating that trigeminal neuralgia (TN) affects more than 3% of MS patients was, “Really, only 3%?” The reason is I’ve seen several complaints about the condition, which causes excruciating pain in the face.

As the story noted, TN is a chronic condition characterized by shocks or burning sensations in the face. It can be very painful. Doctors think it happens because MS has damaged the myelin that coats the trigeminal nerve that carries sensations to the brain from the eye, cheek, and jaw.

TN is thought to affect a much higher number of people with MS than in the general population.

How to survive an MRI if you are claustrophobic

How many people with MS does TN affect?

I’ve seen reports that TN may affect as many as one in 10 people with MS, but researchers in Iran who reviewed studies with more than 30,000 people with MS concluded that the number is likely closer to 3.4%. Based anecdotally on what I’ve read over the years in social media groups, I wouldn’t be surprised if that number were much higher.

Fellow MS News Today columnist John Connor probably would agree. He described a recent attack as feeling like a knife cutting through his molar.

“I couldn’t function! But boy could I scream,” John wrote. “It was 8 a.m. and I was stirring awake. My tongue merely touched one of the bottom molars on the left side of my mouth and a knife was plunged into its roots.”

John isn’t alone in his suffering

I featured the Iranian analysis in the latest installment of my weekly news wrap, “MS News That Caught My Eye Last Week,” which asked people with MS to speak up about their TN. A few did.

Leslie: “The first time I experienced Trigeminal Neuralgia, all I could do was to scream…I had never known such pain.”

Anthony: “My first-ever identifiable MS symptom – long before anyone knew what was happening – was tingling and numbness on one side of my face with no identifiable cause, lasting several weeks.”

Jane: “Trigeminal Neuralgia is terrible. It can be just a burning sensation in the left side of my face or a sharp electric shock when I eat, clean my teeth or just wash my face. Then there’s the really bad one which is like a hot needle going from my teeth in to my brain, the first time this happened I just screamed and when it subsided cried my eyes out. The left side of my face felt bruised afterwards. I’m a mother but this was far worse than childbirth.”

What about a treatment?

The American Association of Neurological Surgeons mentions three medications to treat TN: carbamazepine, gabapentin, and oxcarbazepine. Surgery may also be an option, along with other procedures that use heat or compression with a balloon to destroy or damage the nerve so that it can no longer send pain signals to the brain.

Needless to say, TN is not something to be ignored. I hope the Iranian analysis stating that only 3.4% of people with MS suffer from it doesn’t discourage researchers from developing more treatments.

You’re invited to visit my personal blog at www.themswire.com.

Note: 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 other 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. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

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About the Author

Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun.

Comments

Beverley Chapple

My neurologist was very surprised when I mentioned that I had extreme pain in my jaw and teeth which lasted 24 hours and then gone. Was wondering if anyone else had this.

Ed Tobias

Hi Beverly,

I'm surprised your neuro felt that way. It's my understanding that TN can present itself that way. An example was the quote in my column from the gentleman who said this was his first symptom but then never reappeared. I hope that's the case with you.

Ed Tobias

Hi Beverly,

From what I've read, TN can happen and then not reoccur for a long time. I'm surprised your neuro was surprised.

Leanne Broughton

I also suffer with TN and agree with every symptom expressed. I did not know what TN was the first 4 years I experienced it. It gets worse as the years pass until it is one constant pain that is accentuated by any movement of the face. Between the pain and the constant drugs to deaden the pain, my MS is quickly progressing. I am SPMS, 24 years in. Because of the facial pain I have difficulty exercising (I would do yoga) or doing anything. I think the stats on frequency would be higher if people knew what they were experiencing.

Ed Tobias

Hi Leanne,

Thanks for sharing, as you always do. Passing along our experiences to others is sometimes the only way people understand what's happening in their own lives.

Willeke

Answer: the worst pain in the world according to medical professionals. If I were to show people in a creative way, the left side of my face would resemble a crushed in forehead and upper jaw with every few seconds feeling as if lightning bolts are shooting from my behind my left ear into and around my left eye. After a couple of hours, those stabs turn into a burning, rubber-like feeling, often for days. Since I'm no use painting or drawing, I can only describe it as yelping in silence as I don't want to scare the living daylights out of people. It's truly the most debilitating condition and symptom. If anyone wants to reach out and talk about it, please feel free to check Irelandms dot com as you can never have too much support.

Ed Tobias

Hi Willeke,

I'm really sorry TN has been so painful for you and thanks for offering to talk with others. As you say, we all need to support each other.

jane both

I tried all of these medications. Gabapentin worked the best, but after being on it and upping the dose, my Neurologist suggested surgery. I had the surgery and the nerve was deadened. I haven't had any pain for 2 1/2 years but I have a numb tongue which blocks my taste.. and I have been seeing a dentist for my teeth occlusion.
Glad I had surgery.

Ed Tobias

Hi Jane,

I'm glad you found a treatment that worked for you. Thanks for sharing the info.

Maggie O'Brien

I have suffered with TN since 1999. It truly is the most excrutiatingly painful conditions you could imagine. I had 3 brain surgeries none of them helped. I WAS however, helped by Upper Cervical Chiropractic. Be cautious to search for a board certified UCC. But it has helped tremendously. Look up Upper Cervical Chiropractic.
My neuro called me out of the class I was teaching to tell me I had TN and I should start carbamazepine. The meds helped, but did not eliminate the TN.
If you suffee with TN, try UCC.

Ed Tobias

Hi Maggie,

I'm glad you found help. Thanks for sharing.

John stillitz

Even the author of this article on MRIs and claustrophobia seems to have little idea of the terror and panic that affects someone like me who cannot sit in the back of a 2 door car, in the middle of the row of a crowded theatre or anything but the aisle seat on an aeroplane. Even reading the article was traumatic. I live in envy of those who say MRIs don't bother me.

Char

I had issues after having shingles and the face pain was horrible. My PC doctor said deal with it. Thank goodness for my MS Nurse Practitioner, she immediately got me on meds and we dealt with that issue. I was diagnosed with MS May 2012 and shingles in 2015. Not sure if it was a shingles reaction or MS reaction or a mix of both. Take care out there.

Ed Tobias

Hi Char,

"Deal with it?" Really??? What kind of a medical professional says that to someone in pain? Sure glad your MS nurse was on the ball.

Susan Boyle

I take 600mg of Gabapentin 4xdaily. It has gotten rid of my pain from TN

Ed Tobias

Hi Susan,

I'm glad the Gabapentin is working for you. Thanks for sharing.

Naomi Ruth

I have been doing ms on my own, for 40 years now ,I am not coping any more and not vaxed hope to get nova vax.

Sharon Henry

I had cataract surgery last year. Since then I have extreme ( not consistent) pain behind my left eye. I am loosing my hearing in my left ear and extreme paid above my left eye. Ms is on left side. I haven’t been to ENT to have it checked out but am concerned.

Ed Tobias

Hi Sharon,

I'm sorry about the pain you've been having. I think you absolutely need to contact a physician. Your cataract surgeon might be the place to start, but your neurologist would also be good. Don't put it off.

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What Is Trigeminal Neuralgia in MS All About, Anyway?