The fact that my symptoms aren't very "typical" makes me feel like I'm crazy sometimes. I find it very hard to find an accurate description of the pain and sensations that I have....but I need to figure it out PRONTO...as i go to see the neurologist for the first time Friday. Also i can't seem to find any real triggers...other than the wind and just basically using that side of my face can set it off....if seems to have a mind of its own. Sometimes I can get away with brushing my teeth and other times it sets off an attack. Also does your pain seem to spread out over time? Please share your symptoms?! I will write mine as well once can find the words....
The only trigger I have found so far is cold wind/air. My son plays ice hockey, so that can be a real struggle at times! There is no rhyme or reason for my symptoms - sometimes I can drink, eat, laugh, talk, brush my teeth, wash my face - and sometimes I can't. I have a constant pain in my sinus that is very close to the migraine pain I used to have when I was younger. Sometimes I have a "buzzing" or vibration feeling in my face and/or teeth. I frequently have a hot, searing pain deep in my ear or behind my eye. When I have an attack, its either in my ear, back teeth, eye or sinus and it feels like an electrical shock or a sharp, stabbing pain. It can be one fast shock, or several that continue for hours. The pain causes a lot of nausea for me and it is exhausting! Most recently, I have started having a dull pain in the back of my head, where my neck and head come together. Other weird symptoms I have include a spot above my eyebrow that feels wet, but isn't, of course - an invisible "drawstring" that makes me feel like my face is drooping, and the sensation that my skin is crawling. Sometimes the itching is maddening! Those are my symptoms - I don't know if you have any of those same symptoms or if I've helped you find the words you need on Friday, but I wish you lots of luck with your appointment! =0)
You know that Nichols Cage movie about the burning skull, yep thats how it feels when it hurts. Mine may lay low and only hurt for one or two 10-15 min episodes a day, or like it has been this week, it hurts constantly with periods of intense pain. And yes, even though what you read says it won't wake you up at night, IT WILL. The wind and hot and cold food and drink seem to be my main triggers. As long as I use luke warm water brushing my teeth is no problem, but eating crunchy foods can cause pain. It mostly feels like someone is stabbing me with a ice pick right in the hollow of my cheek, I even went and had the dentist make sure all my teeth were not rotting out of my head. I could go on but I won't. The most frustrating thing is that there are periods when there is no pain and then BAM! there it is again, and of course try explaining that to the Doctor.
For the more mature ladies, have you noticed that when you have a hot flash that the pain subsides for a little while. I have noticed lately that whenever I have a hot flash, as uncomfortable as they are, that the pain will lessen alot or completely for a little while. Its like I have an aura of numbness. Of course it starts back, but for a while there is not pain, just soothing warmth and numbness.
My pain has been constant since my MVD failed last September - stabbing pain in my upper right cheek - cold weather & wind seem to be a trigger. I also now have the deep inside right ear pain frequently but don't know what sets it off...I've always been the girl who loved to laugh, talk, & a smile at everyone, but all three things are triggers that I HATE! :(... Eating (chewing) is another trigger for me, & I recently figured out that weather changes - rain, thunderstorms, etc. make my pain worse. I don't have pain when I brush my teeth, but I often have horrible tooth pain in several teeth on the right side of my mouth - I'm blessed to have a wonderful dentist who will check them for me but the last 3 times I've been in to see him, there is nothing wrong with my teeth, & he is so patient with me because he knows I have Type II TN. I read the other replies & it seems that we all have some of the same symptoms in common. Oh, the one I almost forgot to mention, sharp pain in the middle of my right eyebrow like there's a nail driven into it! It helps both me & my doctors a lot to write down the triggers & location of the pain. God Bless you Bri - hope you're appointment with your neurologist goes well!
My trigger is blowing my nose, and the cold weather. It just feels like a sharp hot knife is being stuck into my cheek area but it doesn't go away, my pain stays until the event is over (Can be weeks). My pain goes from the front of my left ear, across the top of my cheek to the side of my nose.
My triggers are a breeze on that side of my face (even from the car AC), rubbing, scratching or blowing my nose, touching, bumping or rubbing my cheek, and eating. Sometimes, I get burning sensations on my right side of my face and scalp. I feel like a needle is being stuck into my eyeball. I get a little tingling but mostly aching. I feel like I want to hit my face with a hammer to relieve the pain.....not a good idea, I know! :) Most of my pain is at the front of my face and up the bone in my nose.
KRay - I do have some issues after eating, but not all the time so that kind of puzzles me, but I'll take it! I do get symptoms with the bone in my nose as well. Mine is more of an ache as well. It may start with a slight jolt but it is more of an ache.
Lori (Lefty) said:
My pain has been constant since my MVD failed last September - stabbing pain in my upper right cheek - cold weather & wind seem to be a trigger. I also now have the deep inside right ear pain frequently but don't know what sets it off...I've always been the girl who loved to laugh, talk, & a smile at everyone, but all three things are triggers that I HATE! :(... Eating (chewing) is another trigger for me, & I recently figured out that weather changes - rain, thunderstorms, etc. make my pain worse. I don't have pain when I brush my teeth, but I often have horrible tooth pain in several teeth on the right side of my mouth - I'm blessed to have a wonderful dentist who will check them for me but the last 3 times I've been in to see him, there is nothing wrong with my teeth, & he is so patient with me because he knows I have Type II TN. I read the other replies & it seems that we all have some of the same symptoms in common. Oh, the one I almost forgot to mention, sharp pain in the middle of my right eyebrow like there's a nail driven into it! It helps both me & my doctors a lot to write down the triggers & location of the pain. God Bless you Bri - hope you're appointment with your neurologist goes well!
Hi, Lori! Hi all. This is my first time on this site. I'm glad i found it. I had a surgery on April 27, a 9 days ago.Maybe its to early but the pain that I had 24/7 which called Atypical didn't go away YET. I'm going to see my doctor on May8, see what he will say. Does anyone except Lori and I have constant 24/7 burning facial pain on both sides?
Lori (Lefty) said:My pain has been constant since my MVD failed last September - stabbing pain in my upper right cheek - cold weather & wind see awaym to be a trigger. I also now have the deep inside right ear pain frequently but don't know what sets it off...I've always been the girl who loved to laugh, talk, & a smile at everyone, but all three things are triggers that I HATE! :(... Eating (chewing) is another trigger for me, & I recently figured out that weather changes - rain, thunderstorms, etc. make my pain worse. I don't have pain when I brush my teeth, but I often have horrible tooth pain in several teeth on the right side of my mouth - I'm blessed to have a wonderful dentist who will check them for me but the last 3 times I've been in to see him, there is nothing wrong with my teeth, & he is so patient with me because he knows I have Type II TN. I read the other replies & it seems that we all have some of the same symptoms in common. Oh, the one I almost forgot to mention, sharp pain in the middle of my right eyebrow like there's a nail driven into it! It helps both me & my doctors a lot to write down the triggers & location of the pain. God Bless you Bri - hope you're appointment with your neurologist goes well!
Yes, mine isn't every time I eat. I have had to watch eating cold things - especially ice-cream. It seems my pain is so unpredictable....I just wish I could have a week's relief! I'm thankful for this site because I can finally talk to people who know exactly what I'm going through. Thank you!
typqueen said:
KRay - I do have some issues after eating, but not all the time so that kind of puzzles me, but I'll take it! I do get symptoms with the bone in my nose as well. Mine is more of an ache as well. It may start with a slight jolt but it is more of an ache.
Hi, all. Did anyone undergo MVD surgery for a atypical TN? I just did 10 days ago and there is no results yet. Maybe its to early to expect it?
Natasha, I haven't had a MVD, but I hope yours works! Keep us posted on your progress.
natasha said:
Hi, all. Did anyone undergo MVD surgery for a atypical TN? I just did 10 days ago and there is no results yet. Maybe its to early to expect it?
Mary, thank you for getting back to me. I sure will post on all the progress, I hope it will be the good one.
Hi! It's been 12 days since the surgery, so far there is no change. I sow my surgeon yesterday, he said it's normal since I waited 10 years till I decided to go for the surgery. He said that I should expect to see the progress not day after day but week after week. I'd like to believe that, I will wait, after all I have no choice now. I will all of my progress.
I too have fairly constant pain on both sides - I didn’t know anyone else was out there. my triggers are my teeth & the area around my mouth. i can’t chew anything - not even soft stuff w/o genersting pain. so I’ve been on a mostly liquid diet. brushing my teeth is obviously an issue. my temples & top of my head are somewhat sensitive but nothing like my teeth/mouth.
oops… see my post below (I think). still trying to figure out how to navigate the site: hope I put post in right spot! (yes, you are correct; I am not a technological whiz…)
Someone said theirs wakes them at night. I always have pain early in the mornings. And usually around 3 am.Mine is. Constant jaw,ear, face, ear burning, stinging, hot, deep pain. As if something or someone is grinding a knife in my face, jaw and ear. I take neuron tin 600 mgs Every 8 hrs , hydrocodone for breakthrough pain, which is every day.
My ATN is just continual low grade pain, usually behind my eyes, sometimes LH temple. I can't report any triggers, Lord knows I've tried to track triggers down. But nothing in particular sets it off worse. It's just there continually pretty well.
Once was just left-hand side, now, following dental work on right hand side, ( as was the first occurrence after left hand dental work ) on both sides. Blah. No nerve type drugs seem to help me, I use oxycodone for relief.
Natasha: my reading thru this site tells me there is a low success rate with surgery for ATN, a bit better with TN. Cheers, Craig.
I started out 6 yrs ago w/deep, stabbing pain in my right cheek/sinus areat. 3 yrs ago I had a MVD which only made things worse. Since that surgery I now have constant deep stabbing pain around & behind my right eye, cheek, lower lip, teeth & shocking-type pain in ear - everything is affected on the right side of my face. Eating, laughing & cold or rainy weather seem to make the pain MUCH worse which hardly seems possible that it can even GET worse…My pain management drs. just don’t get it - gabapentin, cymbalta & fioracet are their “choice” of treatment. The fioracet helps a little bit with the overall head pain, but only a bit. Went to Johns Hopkins & had a rhizotomey last month but got no relief whatsoever, sadly. Don’t really know what to do next…praying something will give some relief soon. Sorry to be such a downer, just being honest. No pain at all on the left side of my face. Weird!