As most of you do, I read about TN all the time. Several times I have found in literature a reference to "pre-trigeminal neuralgia." I have met with several doctors, dentists, oral surgeons, ear,nose & throat specialist to try to understand what I have and find a doctor who will work with me instead of burying me with pills. I have received various diagnoses--most consistent is the diagnosis of TN. However, one of my neurologists diagnosed my TN as ATN. In looking into the reference to "pre-tn" I wonder if those of us labelled as ATN might be Pre-TN. Any thoughts out there?
The term "pre-trigeminal neuralgia" seems to be falling out of general use, in favor of the more precise "Atypical TN". It was once thought that the generalized achy/burning/boring pain of Atypical TN was a precursor to development of even more severe stabbing electric-shock pain of "Typical" TN. However, clinical experience reveals that there is no one course of development for pain in the trigeminal system. Sometimes people start out with ATN and then develop TN. Sometimes the reverse. And many people experience both at the same time, from onset onward.
About the only "safe bet" in trigeminal pain is that unless it's adequately managed, it tends to get worse over time. Spontaneous remissions do occur in the early stages of the disorder, but they rarely last more than a few months to a year. Progression is slowed or stopped for many people when they find an effective combination of medications that keeps the pain under control. I've talked with people over the years who have had success in controlling TN and even ATN for 15 or 20 years on stable doses of Tegretol, Neurontin, or the tricyclic antidepressants. My spouse is one of those people.
That actually brings up a good question, which may be best in another thread, but, have any studies been done on the eventual progressions of TN/ATN ? In other words, meds are used to battle ATN/TN and can be successful for some people for long periods of time. Is the nature of the condition (I can never remember what to call it, condition, disorder, disease?) to deteriorate over time and continue causing more pain?
Not to be grim, but as someone (and I know there are a bunch of us) who started experiencing symptoms in their 20s, I am wondering what the future (30, 40, 50 years from now) holds as by that point most of the existing drugs will have been gone through.
Good question Jeff. As a woman in my mid-30's this terrifies me.
I am going to take a couple of days to address Jeff's question in research and through some well informed colleagues of mine. I've never personally seen reports of long-period follow-up studies designed to assess progression of trigeminal pain conditions. Doesn't mean studies aren't out there somewhere, but I just haven't seen them.
If you guys don't hear from me by the end of the week, feel free to ping me via site email.
Thanks Red. I really appreciate it.
Thanks! that kind of information would be very helpful