for Ellie a question
 

my jaw gets tics spasms and it dose the major earthquake shakey fits. I know a trigger is weather change and also to much stimulation from the outside... meaning excitment ,stress to much fun or to much talking being in dentists chair with mouth open .... but it also dose it on its own when none of those things are in place. anti seizure meds i can be on and doc says since nerve is snapped it is just misfiring.
What happens with you? I have been trying to get part time job and be somewhat "normal me" again. hard when you have 7 or more years of blank space on your job applcation. and T.N . isnt such a good thing to bring up it is just a turn off.I have been doing poetry workshop to see if I could still write like I could before accident. to get the hang of talking to people and speaking to room full of strangers.
what do you do when all the sudden its crazy jaw dance time? If that is what happens ??? how do you deal??
Burntmarshmallow

Hey there.

Anytime I have a "spasm" (I have several names for them, one is too vulgar to post, hehe) I try to relax a bit. On several occasions, I try to 'distract' it. The first thing I usually do is go to a mirrior to make sure it's even moving. Half of the time, what I feel is not even seen by anyone else. I -think- those are my seizures, but I'm not 100% sure.

When it comes to my face in particular, I will actually try to do something with it. I have these weird flutter type feelings in my lips, when that happens I drink something hot (not too hot since I frequently miss my mouth, heh). If it's my jaw, I will go for something cold.

I also (depending on pain) will try to do 'stretches'. Open my mouth slowly, close it slowly. Move my head up slowly, then bend it down slowly (chin to chest), right, left. I do it all slowly to try and relax everything. That seems to have a higher success rate, but it does hurt sometimes, too.

If all else fails, I go hide in the bathroom until it stops. I know that's not much help, but if it's seen by the naked eye, I feel like someone is 'watching' me. I'm alone 99% of the time, too. So hiding is twice as funny for me since I hide from noone. It's just a silly reaction. Like when I know I'm going to have a seizure, I hide in my bedroom closet.

I'm a weird little thing sometimes :)

I'd say of everything, to try the slow stretches. It's the best way to relax and takes about 2 minutes total. It works well more often than not.

Hope that helps.

~Ellie

Oh, one more thing. I'm so sorry if you answered this already (I have a bad memory). Have you had surgery for this, or have you looked into it?

Hi Ellie . lots to my "story".have to take deep breath and answer that . I have Stim implant for face pain and plates holding lower jaw ... anyways I posted some of my verse on the other thread below this one. I will probly erase it soon. Too will try to explaine shakey fit and post back to you soon.
I know you and all the others here know what shivering is and you can see a person shivering ... ??? I can see a persons jaw move when they shiver cant you ????

forgot to thank you for sharing and the relaxing tips. kimmy dawn too mentioned some things like that. I do relax and meditate and it helps tho not as good at it as kd. not good day today cold and windy sorry if I seem crabby and unapprecitive. thanks ellie and kd and the rest on other thread who posted back. Burntmarshmallow needs a hot bath and her happy chair.
and a new face and a bigger chest and a million zillion dollars and a magic wand to cure everyone t.n. pain for good. ha :) thanks .

We all have bad days, I'd think something was wrong if we didn't! :) Thanks for sharing your story (and don't delete it!).

Also, if you get that magic want, run it over here to wave it by my boyfriends shower. It's dirty and I hate cleaning it! :D

My T.N came from accident hit by semi truck have 3 plates in lower jaw . had jaw wired for 16 wks then rebroke and shaved screws plates... wired for 24 weeks strips of high tec metal along gum , poser teeth mostly all bottom with post into gum. meds docs tests . we all have been and are on the merry-go-round of T.N.
so shands in fla tests for me and more tests and good pain doc who bless him gave me a chance to try pens implant for a.dolorsa and facial pain this was in 2002 I cant have any kind of surgey my olny other choice is cutting nerves and If any one has input on that... even tho I Hate the idea I can do with other peoples thinking on that.
now my jaw shaking is much like shivering but triggers I can help it before it flips out to bad. cover face keep warm slow deep breaths relaxing but other times it is all on its own . where I notice no trigger or cause for it.
like shivering is the best I can give for example, hard shiver teeth clattering together shaking so hard like one would see on cartoon roadrunner when Will e cyote eats earhquake pill and is shaking... but just lower jaw not face or body( hand /arms). I think some of our face tics spasm movements are same but shaky jaw part is diffrent . I am glad it isnt disruptive . and olny a 1 or 2 times a month thing. dose it sound like just a nerve misfiring or something else then what doc told me???????
Ellie Sorry you are on the T.N merry-go round . Keep hanging on tight and many blessing to you and those in your life. I apprciate the time and your thoughts. thanks .
Burntmarshmallow

Ellie I ment erase my verse ... my poetry on other thread. I will probly do that soon. They are all copy righted 2 published but aint leavin them up for long.sorry... but it is a plus about nerurotalk also like how the mods arent behind a "wall" and one such as me can talk with them and get feed back .
neurotalk and the mods here are pretty awsome.It is nice to meet you and kimmydawn (kd) kudos both of you .

Thank you for such kind words!

The complete head in a nutshell (that sounds funny just saying it, since well, it is like something in a nutshell) is so complex it is hard to say what this may be caused from.

However, you have gone through an extreme trauma and I'd assume there was some nerve or tissue damage done during that event. But, I am not a doctor so I can only guess here. I would suggest that if you feel like theres something else that simply is -not right- to get a second or even a third opinion.

YOU know your body best, and you know deep down when something just isn't right. If you ever doubt the quality of your care, get another opinion atleast to give your mind a rest. You may hear the same thing, but you may not, so it is always safe to be certain.

If I have learned one thing, it is to follow my instincts. Had I not done that, I'd be sitting in the same office letting a doctor treat my 'headaches' with Botox. While I hate to have the same tests done over and over, and answer the same questions - I'd be getting treated for something I didn't have if I didn't do all of that several times until I found someone willing to look deeper into things and hear me when I said "Something just isn't right".

If you aren't happy with the answer your doctor is giving you, tell him or her and/or get another opinion. I try to always give my doctors the benefit of the doubt and tell them if I do not agree with them or do not feel I am getting enough 'attention' regarding my concerns.

Best of luck to you, dear and make sure to keep me updated. I can only try to imagine everything you've gone through and admire how strong you are.

You are right listen to own self/body. most of the time I can prevent it and I just met another who kinda has the same shakey jaw thing. I just was wondering if anyone else here was dealing with it . is it a t.n. thing that will get worse . but so far I guess it is just a shot broken nerve . I posted because I am tryin to get part time job and also tryin to get used to talking to people , room full of strangers . that is when the spazy jaw worries over flow my mind and arggh so hard but doing well at workshop and poetry slam . hard when no one can tell at all I have t.n. or a pens implant. One lady is a nurse there I told her so she has my back covered if my jaw tweaks she told me to stop and go to bathroom. ha ha go hide Turning over controll sucks. but at least I can get out and be tryin.
Thanks so much for your caring and reply. Oh and the magic wand not for cleaning bathrooms... can olny be used for peace love and painfree cures sorry!!!! HUGS Thanks much . off to busy .
Burntmarshmallow

But if you saw his bathroom, you would let it fall under 'painfree cures'!

*Snickers*

Personally, I do not have my jaw shake the way you have described. I am not positive, but what I read I'm not convinced that is TN related. I'd really get it looked into if I were you. I know nerves can do some random things, but I'm not sure on this one. Have they tried a mild muscle relaxer on you?

Well, either way. Keep me updated, you sure have me curious now!

*Hugs*

Ellie