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twisten 06-22-2005 12:34 PM

Help with TMJ/trigeminal neuralgia
Hey guys I've been having one heck of a time lately with this trigeminal neuralgia and know my tmj is acting up. My jaws get so sore that I can't even eat and they are locking on me which is extremely painful. I think I've lost close to 10 pounds in the last few weeks to a month. The side effects from the carbazamapine the doc put me on were too much for me so now I'm on neurontin, 200mg 3 times a day. I honestly don't think they are doing much. I feel absolutely no different when I take them. I'm just wondering if its possible the tmj caused the trigeminal neuralgia or vise versa. The tmj is the worst on the same side of my head as the tgn although my jaw on the other side is bothering me also. My tmj doesn't usually bother me too bad but right now it is driving me crazy. There is supposed to be a specialist here my doc is trying to get me into to see but I haven't heard anything yet. Hopefully it won't be too much longer or I'll waste away lol!! I am drinking those ensure drinks, milkshakes, soup etc to get some kind of nutrients in me. Anyone got any ideas or tips for me, I'd sure appreciate some advice. Marcy

Drewtn 06-23-2005 07:17 AM

Re: Help with TMJ/trigeminal neuralgia
Sorry to hear you are having such problems. ((HUGS)) Do you grind your teeth at night?? I was having terrible jaw troubles and I found out one of my meds was making me not sleep well and I was grinding my teeth. I would wake up and my jaw was sore. That is the only thing I can think of.

I just looked up the side effects of both meds and donít see anything related to that. On Neurontin it says hostility. Guess that could make you grit you teeth. LOL :)

Have you talked to the doc about it?? Does your jaw feel relaxed or tense?? (Just in general?) I could tell during the day when mine hurt I was unusually tense.

Sorry I canít help much but I wanted to just throw some ideas out and wish you well. Let us know how you are doing!

*I just looked up to see if there might be some kind of link between them. Sure looks like TMJ can cause almost the same pain.

Here are a couple different things I found:

[B][QUOTE]TMJ syndrome is another possible cause of facial pain which should be ruled out.[/QUOTE][/B]

[QUOTE]Typical Trigeminal Neuralgia (TN) is characteristically described as a sharp or electrical lancinating pain that is set off by a trigger area within the area innervated by the trigeminal nerve. There is not usually any residual pain as it is an all or nothing sensation. The exact cause of TN is unknown. Studies have shown that for some people impingement of the nerve by blood vessels close to the brain can contribute to this disorder. TN is often misdiagnosed as a toothache as the most common trigger areas are within the mouth. This can lead to unnecessary dental treatment, which often leads to an unnecessary dental extraction. An MRI of your brain will also need to be done to rule out intra-cranial pathology. The treatment of choice involves quieting the trigeminal nerve with medications such as Neurontin or Tegretol. As many of these medications have effects on the major organs it is important that a person have a complete physical by their physician. [B]Additionally, any irritations of the nerve by pain impulses coming from [SIZE=3]jaw [/SIZE] muscles, teeth, migraines also need to be addressed.[/B] [/QUOTE]

[QUOTE]Far too often, when a person is suffering with severe facial pain with no apparent cause, the diagnosis given is trigeminal neuralgia. Because of this, the patient may be subjected to medications and even very serious surgical procedures which are not necessary. The symptoms tic douloureux are very characteristic: sharp electrical pain which lasts for seconds. This pain is triggered by touching a specific area of the skin by washing, shaving, applying makeup, brushing the teeth, kissing, or even cold air. The second division of the trigeminal nerve (the maxillary division), which supplies feeling to the mid-face, upper teeth and palate, seems to involved most. The pain is so severe that the sufferer will do virtually anything to avoid touching the trigger zone, producing the pain.[/QUOTE]

twisten 06-23-2005 11:21 AM

Re: Help with TMJ/trigeminal neuralgia
Thanks for the response Drew. I don't know if I grind my teeth but I do know I wake up with my jaw clenched. That very well may have some bearing on it. I questioned my doctor also as to whether what is going is one thing and not both and she says no. I also requested I be referred back to my neurologist for an MRI but that hasn't happened yet. I'm going to be persistent at my next doc appointment in the middle of July and ask again. Thanks again for the help. Marcy

P.S. Liked the comment about hostility! Gave me a much needed chuckle!!

Drewtn 06-24-2005 07:10 AM

Re: Help with TMJ/trigeminal neuralgia
Hey Marcy! :)

I just thought of another thing I used to do. I would wear a mouth guard while I slept. There was a time when I would wake up and my jaw and head would hurt really badly. I bought a guard at the pharmacy and it really helped!! I think I had added stress in my life that triggered it. I guess it reduced the grinding I was doing. Just a thought.

Definitely be persistent with the doc! Sometimes that is all we can do!! Good luck!!

twisten 06-24-2005 08:59 AM

Re: Help with TMJ/trigeminal neuralgia
I'm going to town today so I'll check to see if we can get mouth guards that way. I'm in Canada though and I don't think so. My doctor told me the dental specialist would make me one. Never hurts to check though, you never know I might get lucky and find them!! ;) Thanks again Drew. Marcy

Drewtn 06-24-2005 09:30 AM

Re: Help with TMJ/trigeminal neuralgia
You might find one in the sports section. They use them for sports like wrestling and football. Just a plain sports mouth guard will work. If I remember right when you first get it you put it in warm water and then let your teeth mold it to fit you. I would think the dentist would be much more expensive! I hope you can find one!! Good luck! :)

Please let me know how it goes!

tkgoodspirit 07-13-2005 11:19 PM

Re: Help with TMJ/trigeminal neuralgia
Hey Twisten/Marcy,

How have you been? I miss you a lot. I haven't been on the PM board too often as of late. I am also one of the 1.4 million folks who just returned from evacuating hurricane Dennis! So, I've been gone a little bit. No damage except my car, and I did that myself! Short story, but I'll wait to tell you some other time, it's nearly time for my beddy bye!

I was just looking around the PM board and noticed your older post here. I clench my jaw so badly that I suffered 7 cracked teeth from it. Broke open some filling and caused myself to get 3 crowns! Dentist said it was most likely because of my pain and my anxiety due to my pain, or other stressors in life. I don't grind, cuz, when you grind the surface of your teeth become flattened, and mine are cracked but not flattened from grinding. So I clench extremely hard.

My dentist fit me for a bite guard, occulussional mouth guard is the professional term I think. My dental insurance covered 80% and I use it most every night. I DO notice a difference in how my jaw feels when I wake in the morning after I have worn the bite guard as opposed to when I don't wear it. It takes some getting used to but nothing bad. It fits very tight, which is what it is supposed to do so that your jaw is properly set, that's why even though you pay a lot more to have a dentist fit you for the guard, it's better because it's so important that it fits properly, mostly because you are wearing it for so long. If you buy one that isn't fitted right, it can cause you more jaw pain. Just an FYI.

I clench my jaw so tightly that I even have little "gouges" bitten into my bite guard! I can feel the rough spots on the top of the guard. It's a bottom guard, which is what most dentist will fit you for.

So, I know your post is a little old but I thought I'd add my two pennies worth.

I hope you are feeling better, or at least "OK". I think of you often.

Next time I'll tell you about what I did to my car on the day I evacuated from Dennis! :)


twisten 07-14-2005 10:44 AM

Re: Help with TMJ/trigeminal neuralgia
Hey TK. Sorry to hear of your brush with Hurricane Dennis but glad you're ok. Waiting for appointment with dental specialist right now so hopefully he'll do a mouth guard. Doc switched me back from neurontin to tegretol. Neurontin wasn't doing anything but tegretol makes me like a zombie. Can't win for losing heh?? Anyway glad to see your post and do let me know what you did to your car!!

kds01 07-14-2005 04:53 PM

Re: Help with TMJ/trigeminal neuralgia
Hi Marcy, Kimberly here. I haven't talked to you since my trip to Jamaica. Just wanted you to know it was beautiful. I posted on another thread to you. It wasn't started by you but you had responded. I guess you didn't see it. Anyway, the only thing missing in Jamaica was you. I am really sorry you are having so many problems. We also had a brush with Dennis but we are fine. It came by us but was pretty far out in the ocean, we were lucky we didn't have to evacuate or anything. I just wanted to say hello. Let us know how things are going. I can't give any advice on your current condition but my thoughts and prayers are with you. Kimberly

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