I'm sure that we've all read Atypical Trigeminal Neuralgia Pain as described by Wikipedia. For me, every; single word of the description fits. I try to stay positive, but as I type, I can tell you that I am at an easy Lvl 6 pain. It's what I've learned to cope with.
Although my body fits the definition of ATN, I can also tell you this, it may inhibit me, but it doesn't define me.
I have already connected with one or two friends here who suffer from this more rare form of Trigeminal Neuralgia typically characterized by facial pressure, a sensation of crushing, burning and sometimes throbbing which is typically almost constant. I can tell you that the only time I do not feel this way is either when I am feeling my medication kick in, when I am sleeping, or the blessed 10-20 minute reprieve that I get when I wake up. I also have the occasional Type I symptom of an electric shock that I can feel and hear.
Please share your experiences with ATN, Type 2 Trigeminal Neuralgia, or Atypical Facial Pain. Perhaps through communication, we can find more answers, better ways to deal with doctors by listening to what has worked and what has not worked for you in your struggle.
Stef I agree let’s find better way’s to deal with Doc. and what treatment’s are out there. before I got on this support group no one understood me they just looked with me with blank face’s. At leat there are a great group of people who share and undrestand this pain. so when I see that blank look on people’s face i know this group, is here . Thank’s Ben
I know, Shirley, right? Only those closest to me understand, because I made them understand. I had to make everyone understand. So, that they wouldn’t think that I just wanted to take meds, or be lazy. Yes, a million thanks to Ben.
Wow! Our cases sound like mirror images of one another, now, except for that mine began in '03 unilaterally on my right side with pressure and a crushing feeling mainly, and now 7 yrs. later, during a bad bilateral flair up, the electric shocks as you described have begun.
I am so frightened. I just counted my pain pills and will be out days early. I only have about 3 to last each day. The last of this month will be a struggle for "Mama bear".
What I wonder is, if this stuff is inoperable a/k/a/ no way out, and is kind of unresponsive to the treatments usually effective for Type 1 patients, what then? I wonder??? Lyrica and Morphine is what one of my friends on Fbook swears gave her life back. Wikipedia claims Methadone maintenance is the last resort. I feel as if I am at the end of my ropes, the last resort. I am 38, people depend upon me. I can't go down. When we talked the other night, my pain meds were working, but in the middle of a flair up, I am incapacitated, G-Force. I don't know what to do.
Gloria E. said:
Hey Stef,
When I read you had the electric shocks that you can feel and hear, in addition to the Atypical, I was amazed...I have them too. My TN journey started out with about two years of Type 1, the stabbing, shooting, electric pain, but it came and went so fast I didn't pay much attention to it and didn't even mention it to my doctor. Then the Type 1 stopped and turned into Atypical with the electric shocks I could feel and hear. Eventually, they whole thing went bilateral. I'd give anything to go back to the Type 1.