Hi all! I’ve been lurking for about two months. I’m 42yo. I can’t really say that I have TN (2). I mean…the doc has said I do…but I can’t get my mind to submit to it. All I keep thinking is that it MUST be something else going on. My teeth, my ear, my tonsils, they missed something in the MRI or maybe it’s my jaw…TMJ… on and on my mind goes. Of course, if it was TN-1…I would know. I saw my mom go through that. I get “shocks” but they are ‘muted’ if that makes any sense. Dampened down…and they aren’t on the surface of my skin/face. More in my jaw and teeth.
I had extensive dental work recently. They had a hard time numbing me last time. I had excruciating tooth/jaw pain for 3 days after the work. Except…it never went away. It’s been 10 weeks. I’ve been to dentists x2, endodontist, OMF, ENT and two neurologists. All of the formers tell me nothing is wrong with my teeth. The neurologist says it’s an “angry” nerve or nerve damage from the injections. One neuro says it is permanent and will never go away. They other says it will just take time to heal. I guess time will tell. That answer isn’t very satisfying.
I have constant pain. Ear, throat, underside of tongue, jaw, teeth, side of head, temple…sometimes under my eye and side of my nose and sometimes the upper part of my scalp (unilateral). Most of the time I am certain that it’s my teeth and I should have them pulled and it will feel better. Sometimes it’s the upper, sometimes the lower, sometimes both. Sometimes the front, most times the back. For a while I had a patch of numbness of my chin just below the lower lip.
They have asked me what it feels like. Well…it’s sharp and dull, shooting and constant, numb and painful. It itches and burns and pulls and has pressure…I mean, really I can go on. It feels like everything you can imagine at different times and sometimes all at once.
I am so thankful that it’s not as bad as most people are describing.
After the dental work I couldn’t manage the pain. It was debilitating a week after I had the procedures…I knew something was very wrong. I was going insane. I quickly went from using OTC meds for pain to scrounging up opiates from my prior ankle surgery until I could get to the dr. I mean…it was curl-up-rock-back-and-forth-writhing-around-pacing-like-a-maniac, holding my face/head/jaw while crying and yelling and cussing pain. The next neurology opening was 2 months away. I sobbed and told them I couldn’t make it that long. I really couldn’t. I started calling every neurologist in the state until someone got me in in a couple days. My PCP put me on a load of meds and charted that I was a drug seeker. He sternly warned me that I was abusing drugs because I took my own prescribed vicodin from the ankle surgery I had two years ago. Right. I was prescribed 30 of them and had 28 left. Idiot! The vicodin was enough of a relief that I could minimally function. PCP put me on tramadol, diclofenac, advil/tylenol and tegretol. I didn’t get any relief from those for 4 days. I called crying and asking what to do next and he again called me a drug seeker.
Saw a neurologist who put me on oxtellar, told me that the damage is permanent and that I will eventually be disabled and surgery would be an option at some point. Whoa pony… That seemed awfully harsh to me. Second neurologist has increased my oxtellar, but wondered why the first didn’t keep me on tegretol. I have no idea.
I have little appetite…which I’m fine with. I can’t chew on that side and cannot tolerate anything that is not slightly warmer than room temp. It LIGHTS ME UP in pain if it’s cold!
I’ve been on the oxtellar for 8 weeks and have not had complete pain relief. I am at a constant 3-4, with episodes where I get to 6 or 7. Those episodes are usually daily and can last 30m to hours. When I sleep I do not have pain. For a short time after I wake I am pain free…then it comes. Even though oxtellar is a 24hr release, I start to have breakthrough increases in pain at about 8 hours in.
And depression. I’m so depressed! It’s the medication mostly…the pain somewhat. All I want to do is sleep and be left alone. I feel horrible about myself, haven’t been able to work out and am generally exhausted most of the time. I have nightmares that my boyfriend is leaving me.
I would like to know what other people’s experiences are with post traumatic TN from dental work? Did it heal? How long did it take? Did the pain go away completely? (of course…if that’s the case, these folks probably are not on here anymore!) What medications worked best, with the least depression? And, finally…am I crazy?!? I feel like I’m crazy. Is this all in my head? If the pain goes away, is it a gradual improvement, or just one day it is gone?
Any comments,feedback and encouragement is welcome. Many days I feel so frustrated and defeated. And guilty. Guilty because I know that the pain I have is minimal compared to others who are going through this.