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Worst Pain Ever
It began in my ear. A relentless pain that came with a vengeance and wouldn’t go away. Visits to two different ear-nose-throat doctors proved fruitless until one eventually suggested I contact a neurologist, saying there was nothing wrong with my ear.
That appointment, along with an MRI, gave us more information. Fortunately, I had no tumors or abnormalities in the brain. What I did seem to have is trigeminal neuralgia (tic douloureux), a disorder that affects the trigeminal nerve, the largest of the body’s 12 sets of cranial nerves. We have two trigeminal nerves, one for each side of the face, supplying sensations of touch, temperature and pain to the forehead, eyes, sinus area, lips and jaw.
The pain can move about, with sometimes a low-grade ache or burning background feeling, and then it can attack like a hot poker or cattle prod. People describe it as the most horrific pain ever experienced—I can vouch for that! I wouldn’t wish it on anyone!
Many people go undiagnosed for years, believing it’s a tooth problem, and many have had teeth pulled or had root canals performed to help relieve the pain. Luckily, many dentists are aware of the disorder, referring patients to seek a neurologist’s help.
There are five classic symptoms, although not everyone always has all five. The symptoms are:
• Sharp, jabbing, searing, shooting pain attacks that come and go abruptly rather than being a constant ache. (I happen to have more of the background pain most of the time, along with those “cattle prod” attacks.)
• Pain that is confined to the area served by the trigeminal nerve—upper and lower jaw, cheek/sinus area and forehead.
• Pain that is almost always (95 to 98 percent of the time) limited to one side of the face and does not cross the midpoint of the face.
• Pain that is usually provoked by a light touch of the face or a breeze, especially around the eye, nose and/or lips, or even by talking or brushing one’s teeth.
• Pain that seems to run in cycles and may even disappear for weeks, months, or years before returning.
Is TN a common disorder and who gets it? Most people haven’t heard of it until they or someone they know begins experiencing this type of pain. Studies estimate there are at least 50,000 new cases each year in the United States. Many doctors believe the numbers are higher, based on the fact many patients are misdiagnosed.
It usually affects individuals over 50, but younger adults and even youngsters can have the disorder. Some children are born with it. For those in their 20s, 30s, and early 40s, doctors may want to see if there is any connection to multiple sclerosis. MS is the condition in which the myelin sheath around nerve fibers within the brain and/or spinal cord wears away and become scarred.
It’s also been found that blood vessels in the skull compress and tighten around and along the trigeminal nerve, causing all this pain.
The most important thing if you or someone you know is experiencing this type of pain is to see a neurologist for a complete workup. Find out if you do have this disorder. Don’t suffer in pain and don’t ignore the problem.
Doctors have found that anticonvulsant medications are the most effective for treating TN. These are the same drugs used to treat epilepsy and other seizure disorders. They seem to work because they slow the nervous system’s ability to transmit signals. When nerves are less “sensitive,” they’re less likely to fire off those out-of-control pain signals.
That’s what I was started on in February. It worked like a charm for four months until the pain began again, slowly at first, and then relentlessly the last few weeks. I’m headed back to the doctor, with hopes that I might be a candidate for a non-invasive radiosurgery procedure called the Gamma Knife. There’s no knife or cutting. Instead fine beams of cobalt radiation are focused on the nerve tissue. There are other procedures and surgeries available, too, plus alternatives like acupuncture and chiropractic.
There’s a lot of information and help out there for TN, beginning with the Trigeminal Neuralgia Association in Gainesville, Florida. They have a wealth of information that you definitely will need and appreciate. You will find them on the Web at www.tna-support.org, by e-mail at tnainfo@aol.com and by phone at (352) 376-9955.
They have a terrific and most helpful network of support across the nation. We are especially grateful to our Northwest contact, Ruth Purchase, who can be reached at (503) 650-1984 or pacificnwtna@hotmail.com She’s a real trouper and such a help. In the Seattle area, the chapter’s support group facilitator is Cathie Whitesides, who can be reached at (206) 525-6869 or at cathiewhitesides@uswest.net. You can look up the contact in your state (listed by communities) on the association Web site.
One of the first things you’ll want to do along with making an appointment to see a specialist is to order a copy of a most helpful book, Striking Back – The Trigeminal Neur-algia Handbook, by George Weigel (a veteran newspaper journalist and former TN sufferer) and Dr. Kenneth Casey, M.D. (a Minnesota neurosurgeon who specializes in treating TN). It’s written for the layperson, and it’s truly a goldmine full of pertinent information and hope. It’s just $16.95. You can order it through the association.
So, if you’re suffering this type of pain, please don’t despair and don’t lose hope. Knowledge is power, and the more we know, the better chances we have for getting well. I’ll keep you posted.