New member here. I’d like to run my history by the good folks here for thoughts, feedback, speculation, wild theories, or whatever.
I have Facepain of Obscure Etiology (the ailment formerly known as Atypical Facial Pain). Of course, no doctor I’ve ever consulted has a clue as to what’s causing it, or how to treat it. Here’s a brief history and description.
In 1991, at age 37, I woke up one night with bilateral tinnitus (I had never had this before). Right around that same time (either a couple of days later, or before – can’t recall) I developed an intermittent sensation of what felt like my hard palate going into strong contraction. Over the next few months, the episodes increased in frequency and intensity, and began to spread to my nose and the area behind it. Within a few months, the sensation became chronic – with a mild-to-moderate baseline, and strong exacerbations, usually brought on by a light touch of my nose or the area above my upper lip. The exacerbations would often last a few days, but at times, even when they got very strong, a good night’s sleep would eliminate it and return it to its lower baseline.
The pain is not the sharp pain of TN (I’ve never experience that, thank God, so it’s not Type 2 TN) – it’s a very uncomfortable sensation of strong contraction, tightness, and a deep aching. The pain is ALWAYS bilateral and completely symmetrical.
Naturally, no doctor I’ve ever consulted has a clue as to what’s causing it, and can only take wild guesses at what might relieve it. I alternated between doing alternative therapies (3 rounds of TMJ treatments (but I don’t actually have TMJ problems), acupuncture, chiropractic, myofascial therapies, deep massage of all head and facial muscles, etc etc), and a few medicinal trials (Nortripyline 75 mg/day, Ergonovine (possible migraine equivalent), Neurontin 900 mg/day, Topomax 100 mg/day) – none of which helped. Mostly I just lived with it.
I have another undiagnosed neurological ailment that also arose around the same time (hard to describe – it’s like having many of the hyperarousal somatic symptoms of an anxiety disorder, but zero anxiety – I’m not a worrier at all. But it’s like having a baseline of uncomfortable systemic tension, which gets strongly exacerbated whenever I get into a state of arousal – excitedly telling a good joke, getting frustrated and arguing with an incompetent service rep, etc. This can set off 24 hours of unpleasant systemic symptoms.)
For THAT, I’ve also tried a number of medications, none of which ever helped, but none of which caused problems.
Then in 2005, a few doctors strongly recommended a trial of Valium. It was the first med that seemed to help the systemic problem I just described. As I look back on it, it was also around this time that my Atypical Facial Pain seemed to become less of a problem (but I’m not sure of an exact correlation – the ATP might have eased a year of so later).
After about a year on the Valium, its effect on the systemic problem seemed to have waned, so I tried to taper off. I hit some very strong withdrawal symptoms, and was only able to get halfway off (from 30 mg/day to 15 mg/day). These withdrawal symptoms have persisted ever since (the main one being a profound startle reaction – unexpected noises evoke hours of systemic discomfort), but oddly, during this whole time, the Atypical Facial Pain seemed to have almost completely disappeared.
Until a few weeks ago. I awoke during sleep, and before I was really awake, my nose was itching, and I furiously rubbed the bottom of my nose. It instantly set off my first episode of the same old strong facial pain in the same area – the hard palate and the nose - just like the old days. It’s now back, constantly, just as it was before, and getting set off more easily than before.
I wanted to treat it aggressively this time, hoping that quickly easing it with medication might prevent it from sensitizing and becoming a chronic problem again. My internist’s first recommendation was Baclofen, and I’ve just done a trial of titrating up to 30 mg/day, with no real benefit. So I’m tapering off of that now and considering my next trial (likely Neurontin, but perhaps at a higher dose than my 900 mg/day trial 12 years ago, which did nothing). I’ll be seeing my neurologist on Monday, but he’s never had a clue as to what this facial pain is all about, so I suspect his only recommendation will be trials of Neurontin, followed by Lyrica if that fails.
But I’m curious to hear any ideas, thoughts, or feedback from people here as to possible causes or other treatments that could be considered. (Although I’m very, very leery of updosing the Valium – I seem to grow tolerant to that quickly, and for me, it’s a monster to try to get off of – updosing might be a last option, but it would likely result in me having to be on it for life, and updosing it regularly, and hoping I never develop a bad side effect that would require me to come off). I’d prefer other medications that don’t have the same degree of tolerance and dependence.
Thanks in advance!