I was diagnosed with TN about ten years ago after having pain off and on for 15 years before that. I have been on a low dose of Lamictal for a year now, which has kept the pain at bay, with the exception of a day here and there and one bad attack that lasted two weeks back in February.
I saw my Neurologist last month and reported that everything was good. He was pleased that my symptoms were pretty much non-existent and a thorough exam revealed nothing to be concerned about. Now, I don't have to see him for a year.
Then, a couple days ago I started getting some pain along my upper teeth on the left side of my face. My TN pain has always been contained to the right side. That pain, while not horrible, has increased somewhat and is following the same three paths as the other side of my face. Not only is there some tingling and throbbing but a feeling of pulsating pressure that meets in the center of my face. I have also developed a headache right at the center of my forehead plus the base of my skull and back of my neck are as tight as can be.
Any theories as to what this might be? Have any of you developed pain on the other side? Can one go from having TN to ATN? Or is this just a stress headache that is branching out?
You asked for theories and general information, Karen. To answer your questions:
(1) It is common for Type I (Typical) TN to evolve into Type II (Atpical) TN over time. Your earlier positive response to Lamicdal would be considered by many neurolgists as a strong confirmation that you are dealing with TN or a more general form of facial neuropathic pain. The distinction between the two is often imprecise, and pretty much the same medication treatments are used in both.
(2) It is less common but still quite possible for TN on one side to evolve into bi-lateral ATN and TN (on both sides). When it does, the most common presentation is for the two sides of your face to feel somewhat different patterns or character of pain at any specific moment in time. Pain patterns tend to shift around from day to day.
(3) Headaches of the type you describe could be either "tension" headache or precursors to Migraine unrelated to facial neuralgia. Pain at the base of your skull could be several different things including some type of spasm-related referred pain, or Occipital Neuralgia. A nasty long-shot possibility would be Cluster Headache, which is a bear to treat. However, if you aren't experiencing sudden jabs of ice-pick pain or tearing of one or both eyes, then I'd say the chances of cluster being part of the package are relatively small.
My overall advice is to contact your neurologist and immediately report this new development. You should be seen on a priority basis, and a treatment plan developed for your new symptoms. I suspect one element of the treatment plan may be an anti-migraine med, and another could be one of the tri-cyclic antidepressant drugs known to be effective against ATN.
Please keep us informed as you work this through. And please see your doctor ASAP. You need to control breakthrough pain to keep it from becoming permanently worse and medication resistent.
Go in Peace and Power
R.A. "Red" Lawhern, Ph.D.
Resident Research Analyst, LwTN
Hi Karen,
Red covered it all but I wanted to add my recent trouble. I am ATN and have always had pain on the L side only. Well, last week I had two teeth pulled, one on the left and one on the right. After the extractions I had no pain for two days and when it did come back it came back on the right side. I am pretty sure there are others here who also suffer from bilateral pain. Let us know how your Doctor approaches this.