Meant to include in my last post, is there anyone who has no specific triggers for their attacks. I know that brushing teeth, washing face etc., can be triggers for some people, but there seems to be no trigger for mine, it is totally ramdom, although the tegretol is definately taking alot of the edge from the pain at the moment, I seem to have hundreds of "sparks" all over my face and head daily, with no trigger, just every couple of minutes!! Thankfully no" high voltage" in the teeth for a while, which is the part I dread, I can cope with it elsewhere, but I find the teeth the worst, there are two upper left molars that like to work together to create hell for me, sometimes I think they are about to kick off and my whole body shudders in anticipation, and when it passes(with not too much pain) I can sigh with relief. However, nothing starts them off, or any of my sparks, just willy nilly :)
I am brand new here so take anything I say with a grain of salt. I know very, very, little about TN. Was just diagnosed a little over 2 weeks ago. I wanted to let you know, I do not have any, "triggers" either, at least none I have been able to detect. This is one of the things I was wondering about because I see it is so common for people with TN to have these. My discomfort is aggravated by having the side of my face against a firm surface, like the telephone, but it does not seem to start the pain, only make it more intense when it is already there.
Also, when you spoke of "sparks". That is exactly the word I have used to describe, to the doctor and my husband, a sensation I have. I do not have any of the electric shock feelings I have seen so many describe. When I have the severe burning/searing pain on the left side of my face and chin, I frequently feel what I call, "sparks" or "trailers" that seem to shoot off from the main area of pain. I'm not sure if this is what you were talking about or not.
I had a question for you, too. You said the Tegretol has taken the edge off of the pain. How long did you take it before this occured. I have just been taking it for 2 1/2 weeks, but no relief yet.
Take care and good luck to you in continuing to be able to take those, "sighs of relief".
Firstly, I am not sure how to reply to replies to my posts,but this is a reply to your question about tegretol.
to be honest, I felt terrible for the first few weeks on tegretol, I did have to go back and my neuro upped the dosage, and I think it was a couple of weeks after that when I started to feel good,had a period of approx.6 weeks at one stage, but gradually it started to break through again, which meant another visit to neuro and another increase in tegretol(which I am doing now gradually) , mind you I feel a bit sick in the stomach and my sight is off a little, but I am hoping it will settle. I will be taking 1000mg this week, and the doctor says that 1200mg is the limit for taking tegretol safely, a bit worried about what happens next, when/if the drugs lose their effect???
I hope you start to feel better soon, but their are plenty of lovely people here to share your highs and lows with,
Hi Ellen, I'm atypical as well and I don't seem to have any specific triggers either. I have migratory burning pain most of my waking hours. As far as I can tell, there is never a reason for the pain to suddenly skyrocket. It seems completely and utterly random. That said, there are definitely things that aggravate the pain and bring it up a notch. Eating usually makes things worse, though this is better since I started doing facial exercises before eating. (I have muscles spasms secondary to the pain and physical therapy has been really helpful in terms of keeping them in check). Once, I bent over and my pain tripled. Raising my voice will do it, as well as biking outdoors (I think it's literally the "bumps in the road"). Bizarrely, sometimes brushing my teeth helps calm the pain. I don't know if it "confuses" the nerves into redirecting the nerve impulses or what, but I'm always thrilled when it works. I had a really great day a couple of months ago when I laughed at something, and the pain disappeared. Not for good, unfortunately, but it was still pretty awesome.
I hope your doctor can find the right combination of meds soon that will keep your pain at bay and allow you to live your life to the fullest.
Many facial neuropathy patients report that their pain is not directly related to any trigger zone or zones. It can indeed seem "random". The neurochemistry of tactile sensation is complex, and there is a lot that medical science doesn't know about how the various nerve fibers work and interact, as yet.
This is what I have found over the last couple of years. Some days I can brush my teeth or go out into the wind and have INSTANT attacks. Other days. . nothing until an hour or two later. Then I know it was from what I did earlier but a delayed reaction. Or I go to a very loud event such as my daughter's cheer competitions and I hurt there or suffer terribly the next day. I thought I was nuts but realize that other people have this, too. Possibly you have this happening, as well. Like you, I have several attacks bouncing around throughout the day. The intensity changes with stress or weather.
I hope you are having a day of many "sighs of relief".