I have had Atypical Trigeminal Neuralgia for almost four years. I also have Anesthesia Dolorosa. I was wondering what everyone’s triggers are. I seem to have some that are not “textbook” like you read everywhere. For instance, I find that if I am anywhere with a lot of noise or external stimulation, I get triggered. Please share what you experience. Thanks!
Hi Rennee,
I have some of the usual triggers, like the wind blowing on my face, talking and eating.
But, like you I also find loud noises a trigger. We had a mezzanine floor put in at work yesterday and they were using a very loud drill. This was causing me major zaps at times. I have been up most of the night thanks to that.
Also, if my dog barks this can cause a zap, though I’m not sure if this is because of the actual bark, or me jumping.
Thanks for your response, Jo! I have a lot of triggers like talking, chewing, smiling, laughing, yelling, wind, whistling, weather changes, etc. Oh, and STRESS! Exercise is difficult because any time my heart gets pumping really good, I get the pains.
It just seemed like most of what I find out there are the basics. But, I know I get some odd triggers and thought I would see if there are others like me. Thanks again for responding! I wish you a pain free day tomorrow!
Hi Rennee,
My triggers include being really tired, talking, eating, laughing, wind and weather changes and migraines. All of those are triggers when I am having a lot of trouble. When I’m pretty much controlled, migraines and eating are the primary triggers. I’m sorry you are having pain.
Liz K.
My triggers seem to have no rhyme or reason to them. The one I notice the most is noise. I am a musician and have trouble at band practice ~~ and I usually get worse as the night progresses. Sometimes brushing my teeth is a problem, but not always! At times when I exercise, I get pain. I have modified my exercise routine ~~ an elliptical and pilates machine, just to keep my head fairly stable. Fatigue makes it worse, but doesn’t seem to cause it. Talking sometimes creates pain.
Wow, I guess I have many and various triggers. Best wishes as you work through this!
I can really relate to Pat’s description of the “nail in the tooth” sensation. The pain feels like somebody’s jabbing a raggedy nail up through an upper molar, then twisting it… and sometimes, just for fun, hooking the nail up to a car battery OWWWW!
I have the usual triggers everyone has mentioned; putting on make-up, cold wind, sharp noises, etc. I also have trouble wearing sunglasses (or any glasses) if the nosepiece touches the inside right of my nose. Changes in altitude are a problem. I don’t get on a plane often, but I live on the side of a mountain. The nearest town is in the valley below which is a 2000 feet descent. Going down the mountain isn’t a problem, but coming back up often triggers the pain (weird!). I think it has to do with air pressure… it gets lower as I go up. Also, low pressure weather systems trigger multiple attacks and make life miserable. Luckily, I live in Southern California where the weather is nice most of the time.
I also get nasty migraines that can last up to 3 days. I’ve noticed many of us also suffer from migraine, doesn’t it seem to be related somehow? My migraines were few and far between before I acquired this affliction, and never as bad as they get now. They are also triggered by bad weather, and stress. As the mother of a teenage son who is in full rebellion mode, I have stress a-plenty!
Suzanne M.
Cordless telephone triggers mine.
Mary
Apart fromthe usual talking and eating, my worst episode was when I got very cold and my teeth started chattering. I also could not sit on a soft seat for long without an attack [I’ve not heard anyone else report anything similar]. Thankfully this has gone away now that I can find, and de-activate, trigger points in my neck.
Hi Pat,
I have just tested my theory that sitting on soft seats at home is causing my TN. For one whole day I sat on kitchen chairs, the coffee table, the floor - anywhere but the armchairs and sofas - and the next day - no pain at all. What made me suspect this is that I developed TN about 3 weeks after we bought 2 new suites of furniture and I just spent the whole month of March in hospital because of an allergic reaction to Tegretol. I had 3 admissions in that month with one day at home in between each time. I did not have a single twinge while I was in hospital but every time i came home for a day it returned immediately. So I tried to figure what is different about home and the new furniture came to mind. My GP says she thinks it's more likely to be an allergic reaction to the fire retardant on the new furniture but I can't find anything in print linking TN to an allergic reaction. I still think it's the soft seating.
Pat Gascoigne said:
Apart fromthe usual talking and eating, my worst episode was when I got very cold and my teeth started chattering. I also could not sit on a soft seat for long without an attack [I've not heard anyone else report anything similar]. Thankfully this has gone away now that I can find, and de-activate, trigger points in my neck.
Hi Anne, I was so sorry to learn of your problems but I was pleased to hear you confirm the issue with seating. I'm certain that you're right and that the fire retardant would not have caused TN. Allergies to retardant have been reported in the press as skin conditions similar to burns.
Yesterday I took my husband to look at new sofas, specifically ones with very firm cushions. I still find that following a bad experience at the dentist, unless I sit on an extra cushion, or lie propped up at a 45 degree angle, my jaw is worse.
I have a book on TMJ which lists "sitting in poorly designed chairs" as a cause of TMJ. It goes on to say that sitting and relaxing can cause the neck muscles to become unsupported and the head protrudes. This can cause the fascia [connective tissue] to malfunction and bind down tightly causing abnormal pressure on nerves and muscles. I'm trying to improve my posture with exercises and things such as hand weights but it's a slow job.
You had a really tough time during March. I do hope that you can find a medication which suits you. It's exhausting not being able to relax in chairs though at my worst I spent hours in the kitchen baking cakes etc just to keep on my feet. At least we have a refuge in bed. Pat x
My triggers are weather changes (which seem to be simply barometric changes - esp ones that are extreme) and cold weather. I’ve been miserable all winter. Went to Florida for a week. It was 80 and sunshine. NO PAIN the entire time. I know that summer there would be horrible, but next winter, I’m headed south if possible. I also have teeth triggers, especially electric toothbrush (which I just avoid) and dental work (been tying to avoid for two years until tomorrow). Flossing almost always sets off zaps, so i do it only once or twice a month and after I take my trilepital.
SO I always stay out of rain storms with my floss and electric toothbrush! 
Pat, what are the trigger points in the neck and how did you find them?
Jackie, I too find that bending over can trigger it but a facial pain specialist and a neuro-surgeon both dismissed this.
I’m so glad I found this forum. It’s great to hear other people confirm my experiences that very specialised doctors are dismissing.
Kristi Boyer said:
My triggers are weather changes (which seem to be simply barometric changes - esp ones that are extreme) and cold weather. I've been miserable all winter. Went to Florida for a week. It was 80 and sunshine. NO PAIN the entire time. I know that summer there would be horrible, but next winter, I'm headed south if possible. I also have teeth triggers, especially electric toothbrush (which I just avoid) and dental work (been tying to avoid for two years until tomorrow). Flossing almost always sets off zaps, so i do it only once or twice a month and after I take my trilepital.
SO I always stay out of rain storms with my floss and electric toothbrush! :)Kristi, I'm convinced that extreme barometric pressure changes trigger my attacks but instead of winter being a problem for me, it's summer. I live in a very hot and humid climate and my older car has no air conditioning. I suffered terribly last summer (was out of commission for much of June, July and started to get better in August).Bending over doesn't trigger an attack for me but if I'm already in pain, bending over increases the level of pain immediately.
I can empathize with your triggers. I have been trying to loose all the weight that I have put on since survey and all the meds but every time I get my heart rate up I am guaranteed to vet saps and a full blown TN attck that will last for at least a day. I don’t know what to do.
Rennee DeTullio said:
Thanks for your response, Jo! I have a lot of triggers like talking, chewing, smiling, laughing, yelling, wind, whistling, weather changes, etc. Oh, and STRESS! Exercise is difficult because any time my heart gets pumping really good, I get the pains. It just seemed like most of what I find out there are the basics. But, I know I get some odd triggers and thought I would see if there are others like me. Thanks again for responding! I wish you a pain free day tomorrow!
I get the altitude triggers too. When we go skiing we have to drive from see level up to the mountain and it is almost always the same spot onthe road that I get pain. I now dread it.
Suzanne Marriott said:
I can really relate to Pat’s description of the “nail in the tooth” sensation. The pain feels like somebody’s jabbing a raggedy nail up through an upper molar, then twisting it… and sometimes, just for fun, hooking the nail up to a car battery OWWWW! I have the usual triggers everyone has mentioned; putting on make-up, cold wind, sharp noises, etc. I also have trouble wearing sunglasses (or any glasses) if the nosepiece touches the inside right of my nose. Changes in altitude are a problem. I don’t get on a plane often, but I live on the side of a mountain. The nearest town is in the valley below which is a 2000 feet descent. Going down the mountain isn’t a problem, but coming back up often triggers the pain (weird!). I think it has to do with air pressure… it gets lower as I go up. Also, low pressure weather systems trigger multiple attacks and make life miserable. Luckily, I live in Southern California where the weather is nice most of the time.
I also get nasty migraines that can last up to 3 days. I’ve noticed many of us also suffer from migraine, doesn’t it seem to be related somehow? My migraines were few and far between before I acquired this affliction, and never as bad as they get now. They are also triggered by bad weather, and stress. As the mother of a teenage son who is in full rebellion mode, I have stress a-plenty!
Suzanne M.
I always push my tongue into the painful tooth. It seems to help but maybe it is like holding our stomach when it hurts. It only makes us feel better but really does noting
Jackie said:
When I am in crisis anything connected with the face working triggers. Even breathing just a little harder will give me a spasm. I don’t like to think. About eating , drinking, and talking. All become impossible. Washing and make up are painful. Bending down can trigger.
Last crisis I discovered that curling my Tongue into the spasm ended it quicker, also trying to push my teeth near the pain presention and moving the teeth just a little bought the spasm to an end a little quicker.
Weird or what???
Hi There, I am type one TN. My triggers are almost any thing to do with the face. I was just taking a shower, and the water hitting my face almost did me in. When I was done with that brushing my teeth was a real chore. Sometimes even brushing my hair hurts. Then there are somedays I can do almost anything witout a problem. We are having a lot of hot and humid days here in Wisconsin, I think that is playing a roll in how the pain is having and affect on me this week. It seems any noise sets of the pain, the TV, the dog barks almost any noise this week seems to be bad.
Thanks for being there,
Don