Anyone else have trouble thinking every pain in the jaw/mouth/teeth/head is related to TN?? I have numerous teeth that have hurt from hot/cold--but now i get worried an attack is coming... I have tmj..and now an achey jaw concerns me... I guess this anxiety is just part of the deal.. I am also afraid to go to the dentist because I had lots of work done before this happened...
argh!!!
I’m with you! I just had my dentist do an x-ray of my jaw due to the deep throbbing pain; nothing was wrong except TN. Has your pain changed? My TN started in 2007 with the sharp poker pain in the jaw and ear. Now pain is in the entire left side of my face and more throbbing that goes into throbbing zaps. I never know where it might hit or how, so I do have anxiety, but I try really hard to find things that will make me happy. It may be watching a butterfly or reading, not too much as too much activity flares it up.
For the dentist, mine now gives me nitrous oxide even for cleanings; I’ve also had my neurologist increase my trileptal for a few days before the dentist does dental work. Both are helping.
Take care,
Pam
I have Type 2 TN. I feel like I have a tooth ache constantly. I know the toothache is probably TN, but what if I actually have a cavity, but think it is just TN. So, I just spent $100.00 for the dentist to tell me it is TN. I am sooo sick and tired of being sick and tired. So, I understand.
I hear ya on this topic!!!
I had an MVD and all was good for months, then I developed a whole bunch of neurological issues and come to find out that my body has decided to create its own auto-immune disorder. The GN came back, but its manageable with anti-depressants and no where near as bad, but here's the kicker.... I had IVIG (intravenous, immunoglobulin) treatment and had an allergic reaction to it, I ran a 104 degree fever...all the TN pain came back with the fever, which the neuro wasnt suprised because he said the fever dehydrated me and set the nerves off...fever now gone, pain now gone....but
now I have sinus pain in my head that radiates into my right eye and down to my tooth, the tooth cracked, but doesnt hurt and I need it pulled....I am going out of my mind trying to figure out if its my sinus's, tooth or the TN back...fortunately the pain killers help...but I get where you are coming from...every little thing on that side of my face freaks me out, and my biggest fear has been that this other disorder will make the MVD useless....but I think that is normal for every one of us that has had TN, whether is unmanageable, manageable by meds or fixed with surgery...its always looming in the back of ones head
Wendy
YIKES!! that autoimmune stuff is happening to everyone--must be something environmental causing it..crazy--I feel like having TN we should all be immune from every other ailment for the rest of our lives!!! We deserve it!! I think the freaking out part of this is so hard-- the anxiety,fear,worry...can take away the good moments if we let it... gotta be strong!! so hard....
Crashgirl, what pain killer works for you? I have vicadin, but it doesn't really take away the pain. It dulls it some. I am trying to be positive. I am thankful for a good day, or hour. You know, people say not to think about it. How can you not think about it when you have pain.
One of my hardest lessons (as I am very stubborn), was learning to give up the worry for things I cannot change. I learned that my worry has never changed an outcome, that all I get is something akin to a panic attack. And I do worry but I try to put it into something positive now, like writing or researching TN.
If nothing else, this disease, along with the autoimmune problems, have taught me how strong I am. If someone had told me that I would have to live through years of debilitating and always moving pain (face, head, joints, etc.) I would have said I could not.
But I have! One step at a time and sometimes they are itty bitty little steps. Places like this, family, friends, co-workers, nature each touch me every so often; that support is enough for me to keep on most of the time. A good cry once in awhile helps too!
Right now I feel like a space cadet from meds I just started.
Take care,
Pam
My attacks start the same why. In my gums then within the hour the "shocks" start. I never experience the deep ear pain first. I'm very early in my treatment, but during my last episodes, my doctor had me take a low dose of gabbentenin, when i was sure what it was and it seemed to hold it off long enough to finish the work day. It may have only been a coincidence, maybe your doctor is willing do try something similar.
Good Luck
-Best Jackie
Before I had the MVD, I took Celexia (anti-depressant) and combined it with fiorinal with codeine ( narcotic for migraines) and that seemed to help keep the pain level down without being in a fog all day. Anti-seizure drugs messed me up big time, and only helped with the lightning strikes, of which werent that often....I have/had mostly ATN
I haven't had any of the hard core pain since I ran that fever, and I happened to have some dilaudid laying around that was leftover from surgery and one of those knocked the pain out of me...it took about 45 minutes to kick in, but it worked,
I tried vicodin when I first got TN, I would have had better results eating skittles or M & M's honestly.
Wendy
sunshine said:
Crashgirl, what pain killer works for you? I have vicadin, but it doesn't really take away the pain. It dulls it some. I am trying to be positive. I am thankful for a good day, or hour. You know, people say not to think about it. How can you not think about it when you have pain.
thanks for that...so true...
Liliacatnap said:
One of my hardest lessons (as I am very stubborn), was learning to give up the worry for things I cannot change. I learned that my worry has never changed an outcome, that all I get is something akin to a panic attack. And I do worry but I try to put it into something positive now, like writing or researching TN.
If nothing else, this disease, along with the autoimmune problems, have taught me how strong I am. If someone had told me that I would have to live through years of debilitating and always moving pain (face, head, joints, etc.) I would have said I could not.
But I have! One step at a time and sometimes they are itty bitty little steps. Places like this, family, friends, co-workers, nature each touch me every so often; that support is enough for me to keep on most of the time. A good cry once in awhile helps too!
Right now I feel like a space cadet from meds I just started.
Take care,
Pam