Monday, March 31, 2014

Trigeminal neuralgia: my story

The trigeminal nerve, shown in yellow. (Source: Wikipedia)

I must say, I never thought I’d be writing one of the entries on this blog about myself. However, I think my experience has some educational value. Briefly: I’ve had a little misadventure with a pretty rare medical condition where a wrong diagnosis is no fun. People have had teeth pulled and root canals done only to discover that the source of their pain lies elsewhere. So be aware - trigeminal neuralgia can strike you even if you’re fairly young, and it can mimic a dental abscess or some similar problem.

One day in late February, I spent 11 hours straight in front of my laptop, getting an assignment done. The next day I woke up in agony - my neck was so stiff and hurt so badly that I couldn’t even hold my head straight, let alone turn it to the right. My right shoulder hurt too, and raising my right arm was difficult because of the pain. Combing my hair, getting dressed, washing my face - everything was suddenly a problem. An hour spent searching the web told me it was probably my right quadriceps muscle, not my spine, that had rebelled. Ibuprofen helped A LITTLE, as did sleeping on my back instead of my side.

Two days later, the neck and shoulder improved a bit, but now - surprise! - I began to have  horrible pains in my lower jaw and teeth on the right side, and this time ibuprofen didn’t help at all. The pain came in waves - I’d be in agony for about a quarter of an hour, and then it would die down to a smoldering ache, only to erupt again after awhile. This was on Friday afternoon. I scheduled an appointment with my dentist on Monday morning (she was as concerned as I was when I told her over the phone how much pain I’m in). In the meantime, on Saturday I went to a GP who diagnosed a strained quadriceps muscle, shook her head when I described the intermittent pain in my jaw, and said it “this sounds like trigeminal neuralgia”. In other words - a condition where bouts of intense facial pain are caused by a problem with the trigeminal nerve. She prescribed painkillers for the neck and shoulder (they didn’t help), told me to absolutely forget working on my laptop while sitting in easy chairs, and advised me to see a dentist and then a neurologist ASAP. She also ordered some blood tests which came back normal - no signs of infection (this pretty much ruled out a dental abscess).

On Monday, my jaw and teeth still hurting like hell, I went to the dentist. She examined my mouth, declared that everything seemed in good shape, and sent me off to get an X-ray. Two hours later, when I came back with a nice big picture showing my jaws and all 32 teeth in shades of grey and white, she called a colleague over and they spent 10 minutes looking at every nook and cranny (at 33, I have a number of fillings, but I’ve never had a root canal done) before finally telling me there’s no way this pain could be coming from my teeth.

By now, I could clearly see a pattern in the attacks. My lower right molars and the gums around them seemed to be the “trigger point” - any touching or temperature changes in that area (eating, drinking or brushing teeth) woke the demon up. A big drill would start drilling in my mandible under the fourth lower tooth. Then, the agony slowly spread throughout the right side of my jaw. The mandible, lower teeth, gums, lower lip and right half of my tongue would hurt like the blazes for about 10 minutes. Sometimes the upper teeth and my right ear joined in the fun, sometimes not. I’d get a hot water bottle and press it to my cheek - this helped for some reason - and basically just wait it out. After each attack, the pain would die down to a dull ache that didn’t really bother me much. These breaks, and the fact that I was sleeping normally - the pain didn’t wake me up at night - made the problem somewhat bearable. But still, it was NO FUN.

I probably could have lessened the suffering if I had stuck to eating mushy stuff like oatmeal and mashed potatoes, warmed to body temperature. But I like my food too much to live on tepid slops. Stuff eaten at room temperature was too cold, but yoghurt warmed up to 37 degrees Celsius is disgusting - I preferred to bear the pain. Ham-and-cheese sandwiches and milk-soaked bread weren’t soft enough - every mouthful hurt, but I ate them anyway, trying to chew with the left half of my mouth. I ate bananas (chewing them hurt, too), milk pudding and soft cheeses (too cold at room temperature, but bearable). Vegetable soups, boiled eggs, boiled carrots (love’em) and couscous with sauce were tolerable choices too. Cornflakes, biscuits and pickles were OUT. A nice Polish breaded pork chop (kotlet schabowy), one of my favorite foods, had me cringing at the very thought of sinking my teeth into it. You get the idea. Bouts of pain also started spontaneously, every two hours or so, but the ones caused by eating, drinking and brushing teeth were the worst. I also made a weird discovery - biting down on a small piece of raw ginger with the hurting teeth seemed to shorten the attacks.

After the visit to the dentist, I was so tired of the pain that I made an appointment to see a neurologist the next day. She listened to my story, looked at my X-ray, tested a couple of reflexes and told me I had trigeminal neuralgia, just like the GP had suspected. She prescribed a drug, gabapentin, to calm down the nerve, and another medication to relax the still-hurting muscles around my right shoulder. She also said there’s no way to tell if the strained muscle and the neuralgia are somehow related, but the coincidence is certainly strange, and that a MRI scan of my head is called for to rule out any dilated blood vessels pressing on the lower branch of the trigeminal nerve.

Over the next couple of days, the weather became sunny, I did a bit of nordic walking, my shoulder got better and the neuralgia also resolved, bit by bit. I bought the gabapentin but was mistrustful despite the neurologist’s assurances that it’s a safe drug - I wasn’t looking forward to constantly feeling drowsy or getting a viral infection (two side effects listed as “very common”), so I decided I’d only start taking it if the pain became worse. It didn’t. On the contrary, it slowly eased up. After three or four days, my jaw and teeth only hurt during meals - every mouthful of anything warm or cold still caused stabs of agony, but those 10-15 minutes of pain were tolerable as long as I knew it would pass. Now, several weeks later, to my huge relief I’m practically pain free. One tooth is still a bit tender, but I can chew everything again, even raw carrots and apples (when the neuralgia was in full bloom, munching on a carrot had been unthinkable), and eat yoghurt straight from the fridge without moaning and holding a hot water bottle to my cheek.

The MRI scan of my head was performed about three weeks after the neuralgia first made its appearance. It was quite a cool experience in its own right. Not knowing how loud the noises of a MRI machine are, I refused earmuffs because they were uncomfortable, and only wore earplugs. I swear the deafening “music” of the vibrating coils, with its various tones and rhythms, sounded like something out of a SF novel. Thank goodness I’m not claustrophobic, so the machine interior didn’t bother me. The hardest part was lying supine for 15 minutes (I’m the sort of person who gets impatient after two minutes of lying still), trying not to move despite the fact that most of my muscles were twitching, and a slightly scary sensation of warmth on my face. I thought that stress and vibrations were causing the twitching. Afterwards, I learned that it was actually a side effect of being subjected to magnetic fields 30 000 times stronger than the Earth’s magnetic field. Some people experience it, some don’t.

The MRI scan results came back completely clear - no blood vessels pressing on the trigeminal nerve or anything like that. As of today, nobody really knows what caused my neuralgia, and I can only hope the pain doesn't come back.

I’m also thankful for my good health insurance, which made the ordeal easier: doctors’ appointments could be scheduled faster, I only had to pay for the dental X-ray - even the blood tests and the MRI contrast dye were covered by the insurance policy - and I didn’t have to wait two months for my MRI.

The lesson? Please remember:

-         DON’T work for long hours sitting in an easy chair with a laptop on your knees. Always sit at a desk or table and have some support for your elbows... otherwise the muscles in your back will take offense and you’ll end up like I did!

-         Terrible pain in your upper and/or lower jaw and teeth might not be due to teeth at all! Get an X-ray before having any radical dental work done. Trigeminal neuralgia is supposed to be rare and happen mostly to people after 50, but I’m 33 and I have it!


  1. Multiple options are available for the Trigeminal Neuralgia Treatment. Medical treatment includes anticonvulsants such as carbamazipine, oxacarbazepine, clonazepam and gabapentin and antispasmodic agents such as baclofen. These drugs can be given alone or might be given in combination with each other however if medications fails to treat the condition or produce side effects such as fatigue then surgical treatment is recommended the procedures include microvascular decompression in which blood vessels causing problem are relocated or removed and gamma knife radiosurgery in which a focused dose of radiation is used to destroy trigeminal nerve all together at its root.

  2. Have you had any recurrence of the TN attacks?