I have ATN, and had a brief-ish remission for about 6 weeks. I went off all my meds. I had a recurrence just about 6 weeks ago, and none of meds are helping! None!
I’m taking tripeptal, neurontin, magnesium, riboflavin, and b12. I was on baclofen for a few months during my last pain cycle, but it made me so distracted/loopy that I couldn’t function at all. I left my keys in my car, with the car running, for 4 hours! I couldn’t complete sentences, I couldn’t think of normal vocabulary words. I was a mess. Plus, it didn’t seem to help, so I’m sworn off that stuff.
I have recently been diagnosed with MS, but I don’t have any symptoms–although now there’s a chance the TN is the symptom, I guess. I’m seeing an MS specialist in 2 weeks.
Another poster in an older intro post had a number of people recommend a tricyclic antidepressant–I have been to 3 neurologists in the course of 1-2 years, and none of them has mentioned this possibility to me. These neurologists were at the Cleveland Clinic, Ohio State University, and a local doc. My sister-in-law searched her paid doctor database for treatment options (she’s a pediatrician, so she can get into doctor material we can’t see), and these antidepressants weren’t mentioned. How can I suggest to a neurologist that I want to try these meds if they’re not cited as a possible treatment?
I’m beside myself right now with pain–it’s getting worse, not better. It’s bad enough, I can’t think or do much of anything.
As far as we know, there was no episode to cause the onset of my TN–just a severe bout that sent me searching for a doctor, then another doctor, then another…
I also have a blood disorder that forces me to be on anticoagulants for the rest of my life, so the nerve-block doctor I saw wasn’t willing to do a nerve block. I agreed with him that the likelihood of success made it a wise choice. I still understand, and think I would just be devastated when it didn’t do anything.
My biggest trigger that isn’t really a trigger, but aggravates my pain when I’m already in pain is any sort of odor. I can’t be in the kitchen when anything other than pasta is being cooked. I can’t smell soap on anyone’s hands. I can’t smell shampoos or toothpaste.
I tend to crave breads and other non-stinky foods, too–it’s weird.
Anyway–this is my intro and a vent about how much pain I’m in. I hurt a lot.