Because only 12 people out of 100,000 are affected with Trigeminal Neuralgia each year, few know of the condition until they get it.
I’ll only talk about Type 1 and not cause further aggravation by jumping back and forth between the typical and the atypical Type 2. The electric-shock pain of TN-1 is like feeling the effect of holding a nail in a light socket with a wet hand.
GETTING A DIAGNOSIS
My experience began normally enough with the pain centering around a tooth. Naturally the first step was a trip to the dentist. Even when x-rays showed no decay and a tapping parade around my mouth produced no evidence of a dental problem, I was not convinced. I scheduled a dreaded ‘root planing’ to ensure a tiny speck had not creeped below the gum line. Well-meaning suggestions from friends and family to try Sensodyne Toothpaste was more annoying than helpful. It still had to be swished during the rinsing cycle and they clearly did not understand how excruciatingly painful that motion was.
After that, speaking generated into a word-to-word risk, a ten-minute meal was an hour-long ordeal and face washing was a delicate operation. Google diagnosed the symptoms as Trigeminal Neuralgia. This is not a condition people choose, it is the road they follow when there is nothing else that can cause the attacks. To shorten the journey many posts and numerous commentors outlined, I set out to avoid the pitfalls of misdiagnosis.
You don’t want TN but you need an official MD to say you do. You can’t order an MRI yourself so you’re dependent an MD’s database of knowledge. Not so easy! My primary doc pooh-poohed the very possibility of TN and sent me back into the dental field for more useless teeth tapping and x-rays.
I was aggravated by the professional ‘drill’ and I’m not a fan of stroking doctor ego. Besides, Google couldn’t be wrong. Personal intensity and a ‘lucky’ break to have a face-crushing attack while speaking finally landed an appointment in the medical field of facial pain. The Facial Pain Center gave a ‘probable’ TN diagnosis, a low-dosage prescription for Neurotin (Gabapentin), a script for an MRI and a referral to a neurological surgeon. The surgeon, whose specialty is TN, put any doubt to rest, tripled the Neurotin dosage, scared me by voicing the end-of-the-line surgical procedures, but openly said to try the medicine route first.
I decided to stick with the Facial Pain doctor since TN-1 isn’t life threatening. The medications and their side effects, however, seem like it might be preferable. The balance between taming the pain and preventing your brain from turning into a dysfunctional mushy mass has to be a cooperative effort between the prescription drug pushers and your personal idea of quality of life. Nancy Reagan was right: Just Say No!
The brain is a smart instrument that can be nudged into thinking pain doesn’t exist, but after a while it catches on. The TN treatment is to add more drugs to the daily regimen when the pain returns. So when my six-week relief ended, Baclofen was my additive. ‘Don’t drive a care until you know the effects’ translated into you can no longer risk driving a car. In fact, I found uttering a sentence burdened with complexities.
My doctor was irritated by my resistance to his ‘suggestion’ that another drug be added to counter the Baclofen side effects. I had read a book on TN called ‘Striking Back’ and the many alternative medications TN patients listed in their treatment testimonials. I was not getting on the drug merry-go-round. Instead of meeting his threat to ‘pass me along,’ I reduced his hostility by settling to up the Neurotin. At least I knew that beast.
Between dosages, I currently have a two-hour window of functioning intellect but the attention span of a gnat. By managing the triggers, I give myself an 80% rating and am simply too lethargic to care about the other 20%. I take TN one day at a time, still dreading the next decline.
It is difficult to be pro-active when the ability to weigh options is compromised by medicine. I need to go doctor shopping or back to the neurologist. The surgical options are there. Today though, I feel that as long as I can stay where I am, I’ll consider surgery a vague option. I don’t borrow trouble.