Do you have T3 pain?
I have a few starter questions that I'd like to ask - exactly what your pain is like, exactly where you get it and what your triggers are.
I've had T2 for a very long time, and now I also have T3
Thanks :-)
That is where the bulk of my pain is. I have a shock like flash pain in clusters. Then I have a ache around my jaw and ear. My trigger spot is just above my lip on the right side, along my lower teeth on the right and my right cheek bone.
Occasionaly the pain extends up the right side of my face into my temple. Also if I rub my neck behind my right ear I have the cluster shock pain.
Where is your trigger?
I hope this helps.
Hi Bobbie, at the moment it is mostly being set off via eating, when the food/drink goes over to the left side of my mouth. It's as though the teeth/gum absorbs the pain from this and then it sets into my jaw & travels right up to my ear. At first I really did think that FOR ONCE it was a bone fide case of dental pain.
It's sometimes set off when I talk too much and when I have excess saliva around it (similar to the drinking situation I suppose)
I'm mostly only having anything through a straw, I don't really care about that, just have to be careful and sure of my "diet"
Thanks for replying
Bobbie said:
That is where the bulk of my pain is. I have a shock like flash pain in clusters. Then I have a ache around my jaw and ear. My trigger spot is just above my lip on the right side, along my lower teeth on the right and my right cheek bone.
Occasionaly the pain extends up the right side of my face into my temple. Also if I rub my neck behind my right ear I have the cluster shock pain.
Where is your trigger?
I hope this helps.
Lyn, Thats how mine started. Seven years ago I thought I had a big dental issue. The meds are all that help and sometimes in big doses.
B
Hi, Lyn. V3 was also the second place where my pain spread. It has the same character as you describe. I have never heard it put that way, but it makes sense. It is triggered mostly by chewing, and I have to be careful what and how I eat. I also have to make sure that I take my pain meds before eating, or they will not work as well. Yes, strangely enough, it is as if "teeth/gums absorbs the pain". Well put.
Mine is a throbbing in the root of every tooth and aching/burning in the surrounding gums that can begin with my bottom lowers or with upper back teeth, which would also be V3 if the below diagram is correct. Eating is my biggest trigger.
At the moment, I am experiencing this exact feeling. It is as if someone has a muzzle of pain on the lower half of my face which crescendos in front of my ears, around my temples with a "pressure" type feeling there. It is a burning, throbbing and pressure. The character of the pain is so much like what you described. I just ate, and oatmeal of all things. Wow. I was going easy on myself this morning. Usually, the meds take care of most of it, but not today!
But, again, nice description of the lower branch pain. It fits. I relate. I hope you find relief soon.
Like Bobbie says above. At least in my case, the meds are "all that help and sometimems in big doses".
Hi Stef, thanks for adding the graphic. You know, taking it one step further about food, I can honestly say that for me it is as though the pain is actually IN the food/drink which I now call the ‘Necessary Enemy’. As soon as the NE goes into my mouth and touches my teeth…WHAM just that introduction is enough. I don’t have to even move my mouth or jaw.
And the other NE…talking, my motto for that is ‘little & not often’. I think that it’s the saliva as I’ve said above. I have to keep my mouth as dry as possible.
This is the first I’ve seen of V1, V2 and V3. Looking at the drawing I would say my pain is right along the line between 2 and 3. The pain tends to radiate from my back upper and lower teeth down along my jaw and up to my jaw hinge. I often massage that jaw hinge pretty hard as it feels like it locks up and the massaging seems to help. I am currently having an episode of pain that has lasted for two weeks now, after having no pain for 6 months. It comes and goes but comes back really badly if I chew on the right side of my mouth at all. This has never been the case in the past. I’ve had TN for most of my adult life although it wasn’t diagnosed as such until 2004. I’m 55 now.
Right, sometimes it feels as if the pain is "in the food". It is strange. You see, brushing their teeth can sometimes trigger attacks for a Type I patient. But, brushing my teeth after eating, removing the traces of the food from my mouth, can sometimes help stop the burning. Sleep also re-sets the cycle of pain when I am having a flair-up.
The graphic just shows which parts of the face each branch of the TN nerve affects. I definitely have more trouble in V3 and V4, like you, and sometmes, it is severe.
Karen, yes, I press my fingers around my jawline and rub as hard as I can. I will rub as hard as I can. I don't know if this is good for my Atypical TN, but the pressure feels oddly good?! Huh?
I don't know why either of these things, the food seeming to cause pain, or the hard massage along the jaw hinge seems to help, but it does.
Atypical Trigeminal Neuralgia is a very strange and rare condition. The more I read of the experiences of others, the more I can find to relate with.
I am one of the lucky ones. I do get reprieves from my pain. In fact, before my monthly bill came, which always causes more pain, on a combo of meds, I was not feeling the symptoms for a couple of weeks.
My pain meds just recently changed. The new regimen was working like a charm. I even posted myself in the "Success Stories" section. Then, symptoms showed back up.
Thankfully, I tolerate the NE better whenever I am medicated.
Best wishes to all for effective, informed and compassionate care,
Stef