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: I’ve seen regular complaints about the condition, which causes excruciating facial pain.
TN is a chronic condition. It typically causes shocks or burning sensations in the face and 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 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 weren’t 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 Trigeminal Neuralgia suffering
I featured the Iranian analysis 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.
(A version of this blog first appeared on the MS News Today website.)
(Featured image by luisa Munoz from Pixabay)
