Trigeminal Neuralgia, MS and Me

Community Member

I was brushing my teeth one morning with my electric toothbrush, just as I did every morning for years, and my life changed forever.

Suddenly there was a shock in my mouth, as if there was a lightning storm on my teeth. I immediately dropped my toothbrush, but it did not stop. Tears were streaming down my face because of the most intense pain I could ever imagine. When it stopped, my jaw continued to ache. I was exhausted and scared. What had just happened?

Trigeminal Neuralgia (TN) happened, and it happened again before I put away my electric toothbrush for good. I did not have another attack for months, but by then I knew what was happening. My doctor told me I have tic doloureux which is another name for trigeminal neuralgia. It's also known as prosopalgia or facial pain, and it has a nickname of "the suicide disease."

TN is rare for MSers, about 4 percent. Initial attacks are most common in the mid-40s or 50s, and for me it was mid-50s, soon after some major dental work. I had major attacks every once in awhile that usually included several lesser attacks, followed by periods with no problems. I took no medicine because the attacks were very short-lived. They did not give me enough time to take something before they were gone, and afterwards I was left with just a lingering dull ache.

One Friday afternoon I had a major attack, then that night, another just as painful. Through that weekend I had attack after attack, with little time between to take a breath or eat or drink. I called my doctor asking for medication to make the pain go away. I started taking a low dose of Tegretol ®, an anti-convulsant to relax the area around the nerve.

Finally, I had a year of relative peace. I thought the problem was over, but I was wrong. I was on a business phone call when my TN returned with a vengeance. This was the beginning of a long period when I often could not open my mouth without triggering another agonizing attack. For months I could not talk, and could barely eat or drink. I became weak, dehydrated, and nauseous. I went to a new neurologist who prescribed Lyrica® in addition to the Tegretol® I was already taking. This drug cocktail, Tegretol® plus Lyrica®, has allowed me to be pain-free for months, and I can eat and drink with no worries of triggering a new attack.

My only problem now is that I sleep so much. I fall asleep sometimes in mid keystroke when typing. My dosage of both the Tegretol® and Lyrica® has been adjusted in hopes of finding the right level of medication that allows me to be pain-free and awake, too.

This experience has reminded me that having one disease (MS) does not exclude having another, such as TN. There are many other examples in the MS community here on Health Central, and my MS Hero Neil Cavuto had cancer before he developed MS. I am grateful for continuing advances in modern medications that address these circumstances. There is always hope.