Join Date: Jun 2012
Trigeminal Neuropathic Pain
Greetings, all. Anyone have this? My left upper lip feels like it's being gripped, twisted, and pulled in a pliers. Sometimes it feels like duct tape was just ripped off it or bees are stinging it. If I brush my lip I get electrical sensations up to the eye.
The V2 branch of the trigeminal nerve was damaged (apparently demyelinated, because it is now like a live wire without insulation) when I slipped on driveway ice and landed on my left ear in 2009. Since that moment it has hurt to talk or smile. One tooth immediately turned gray and has since required a root canal. A molar in the affected area crumbled after the nerve died, and needed extracting. (Am signed on for an implant next week.) Flossing is painful.
Neurologists, dentists, GPs, and the director of the Facial Paralysis Institute in Beverly Hills all told me to take a wait-and-see approach, as the nerve would almost surely regenerate, albeit slowly. Today it is much worse.
Anyhow, shortly after my incident my employer of nine years ditched me in a corporate downsizing from my position in marketing communications in the PR department of an international not-for-profit. Then they tricked me out of my COBRA, so I'm without coverage to this day.
For the next 20 months I applied for every opening out there, but no one will hire a woman of 55 who is no longer comfortable in her own skin. I've filed for SS Disability, but help is not at all assured--how convince a judge of this invisible pain?
The financial challenge on top of the inescapable torment has me struggling to find motivation to go on. I avoid people because I can't express myself without intensifying the pain. My boyfriend of six years recently downgraded me to "just friends"; I can't much blame him: the sick must not be allowed to infect the healthy, so my quarantine is for the good of all.
The temptation is to simply trust Nature, go back into the bardo, and get a new body. Life is not meant to be so thoroughly infused with suffering. It hurts to smile, so the happier I am, the more miserable. Try to remain positive all you like--that feels like just faking it. If life is no longer good, then it's bad. Keeping it real, if there's no fix for this, there's only one way out.
I've tried but can't tolerate Neurontin, Tegretol, Lyrica, and tri-phasic antidepressants. Vicodin doesn't touch the pain. Sunday I thought I'd keep popping them until I reached the threshold, but it never arrived; next morning when I got in the shower the water on my face felt like a scalding iron. Chalk up yet another failed strategy ...
... because I've tried nerve block, Botox injections, acupuncture, upper cervical chiropractic, a TENS unit, magnets, capsaicin cream. Plus a session with a medical intuitive, a Cherokee healer in Washington State who told me to avoid liquor, juice fresh lemons and limes over everything, inhale peppermint oil, walk outside slowly while repeating to myself "I never fell; it never happened!" in order to reprogram the pain centers of my brain. She asked "What are you GETTING out of this? Who is treating you SPECIAL because of your condition?" (I wish!)
Last year I flew to Long Island and saw an eminent neurologist. He looked at the MRI and said I needed an MVD. By luck, while I was pricing the same procedure if done in India, I stumbled on Frank Vertosick's Why We Hurt: A Brief History of Pain. Vertosick studied under Dr. Jannetta, pioneer of MVD. One of the book's anecdotes features a woman with trigeminal neuropathic pain (a.k.a. anesthesia dolorosa), chronic pain like I have. She's waking up from MVD and starts in bitching because the pain is still there. MVD does not work on trigeminal neuropathic pain. The lesson here is, never ask a barber if you need a haircut. His surgeon's fee alone was going to be $102,000.
Last week I cancelled a consultation with Mayfield Clinic in Cincinnati. I was set to pre-pay for a Percutaneous Stereotactic Rhizotomy the day following the consult so I would only have to make one trip. Then I watched some DVDs from the TNA conference. One had all the docs up front nodding like bobbleheads in agreement that with trigeminal neuropathic pain, further destruction of the nerve does not help, and may make it worse. Yet everyone's poised to take my scarce dollars to do just that.
Trigeminal nerve conditions are associated with high blood pressure, cold sores, shingles, and stroke, according to a presenter at the 2010 TNA Conference. I've had all but the latter, and now I frequently wake up with my left arm tingling ominously. More fun to come.
Trigeminal nerve conditions are disproportionately frequented on older women. Menopause deprives you of 90% of your hormones. Progesterone protects the nervous system; since 2007 some ERs have been administering progesterone by injection for head trauma patients. My accident occurred after menopause and before I had figured out bio-identical hormone replacement therapy. Bad timing. Fatal error.
I am not religious; I am a Nietzschean. So G. K. Chesterton's "Ecclesiastes" does not convince as it otherwise might:
There is one sin: to call a green leaf gray,
Whereat the sun in Heaven shuddereth.
There is one blasphemy: for death to pray,
For God alone knoweth the praise of death. [& etc.]
Does any of this resonate with you? This is my first post here, and to know that others are going through the same thing is not particularly comforting. Support groups with everyone sharing their sad story mostly make me ... sad. The only thing that works at all is to spend time with happy, healthy people who still find something in me to love despite my having been singled out for a terrible fate. I can riff off their joie de vivre. But even then it's vicarious joy and so I'm wondering: Do they love me for what I was BEFORE?--a hale companion? If so, their patience must at some point run out. And then the quandary over what to do about this will be a no-brainer.