dmtnet
Newbie
Reged: 11/11/02
Posts: 29
Loc: Southeast US
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I am currently taking Vicodin ES for my TMJ pain twice daily, its enough to get me by unless its on a stressful day. My doc is open to pretty much anything I can suggest to him, today he suggested neurontin and after some research I am going to have put up the big stop sign on that suggestion. I'm just getting tired of taking this type of pain meds it makes me droggy and I feel the withdraws pretty bad when I miss a dose. So I'm pleading to the community thats helped me out in the past to help me now if possible. My TMJ is so bad my mouth will actually lock up and sometimes my jaw will slip out from one side. I am currently using a night guard and using it in the day time when I'm around the house. But its just getting bad because I'm going to have to kick up my hydro intake to keep up with my tolerance levels pretty soon - I've been on it for 4 months now as just maintaince. I've also tried flexeril, soma, and skelaxion without any type of results to write home about. Also I've tried a number of benzo's and they are on for about 30mins-60mins and then completely gone so they are not looking like a long term solution.
I have also been advised about the surgery to attempt to rid me of this problem but from the people I've talked to and things I've read it can do more harm the good. I'm in my early twenties and would like to be able to have hearing in both of my ears and my jaw to at least look like its functioning so as of now I'm going to pass.
Thanks ahead of time, any advice is appreciated.
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537
Threadhead
Reged: 12/08/01
Posts: 766
Loc: west coast CA
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I am in the same boat as you, but have no solutions to offer. If anyone knows anything, plaese share. My TMJ is getting worse, it seems, by the month. I hate waking up in the middle of the night with my jaw locked and out to the side. It's making my neck and upper back hurt, as well as my ears. So, I totally understand where you are coming from.
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tlynnburk
Journeyman
Reged: 02/01/04
Posts: 88
Loc: ohio, USA
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I am in the same situation. Got TMJ in 1992 following a car accident in which I nearly died and broke nearly every bone in my body and a few in my face. After I got out of the hospital 4 months later I started having jaw pain. 12 years later it is still here. Surgery is my only altnative, but I hate to take the chance that it won't work. I am so sorryto hear that you are all in the same boat
teresa
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triplecow
Newbie
Reged: 02/23/03
Posts: 34
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I know a lot about TMJ guys.
1) I have it and it is improving greatly.
2) treatment involves a "splint" device worn 24/7 for about 6mo to a year and is custimiszed by a TMJ dental specialist. The one i saw was in Rochester, NY USA and he is acclaimed to treat TMJ Dysfunction.
4) Treatment also consists of the drug Zanaflex. It helps 80% of TMJ patients pain until it can be resolved.
5) And this is the bad news, TMJ is highly associated with fibromyalgia. The 2 diseases nearly come hand in hand and if you have fibromyalgia you probably have chronic fatigue syndrome too, or IBS, or MCS etc..I developed CFS slowly, then Fibro and finally, TMJ. All these diseases are linked. Trust me..
I'm a volunteer researcher for the National CFIDS assciation, so I know quite a bit about this whole ordeal and pain and disease etc etc. I am so sorry for you guys!
FIND the best TMJ specilist (even if you have to drive zillions of miles) to get these splints or zanaflex. They look stupid, you will sound retarded but within a year , no clicks, pops or pain in the face or ears etc..
Last thing is, most treatments are very individualized. Make sure you get the absolute best TMJ specilist, or you'll end up more messed up then before.
Zanaflex really helps the pain out of the most meds...
kind regards,
triplecow
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Fiver
Member
Reged: 10/02/03
Posts: 104
Loc: Michigan
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"TMJ Specialist" is not a recognized specialty in the ADA. One need only have a sign maker add those words to his door to be a "specialist" and thus there is little quality control. Most TMJ pain comes from parafunction of the intricate musculature, and it can be alleviated by wearing a night time device called the "NTI." A dentist can make this for you in one sitting, and I will guarantee that this thing will make you feel like a new person within one month. For more information, go to www.headachehope.com or visit the Usenet group sci.med.dentistry and you'll be believers, just like me.
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triplecow
Newbie
Reged: 02/23/03
Posts: 34
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I goto the Eastmen Dental Clinic in Rochester NY and see dental researchers who specialize in the etiology of TMJ Dysfunction. There are 3 causes , most autoimmunetype conditions induced by truma or infection usually FMS or lupus. Whatever your specialty is (dentistry etc..) try thinking outside the box for once instead of listening to these old dental teachings. The NTI device works for some people, but a custom splint and neuromuscular manipulation is what corrects it. It needs to be custom. My speciality is in various human sciences , so i think i know a bit more about TMJ hence my experience with fibro/cfs non profit organizations who deal with it daily and chronically.
google this information and proove me wrong. look on message boards.
tc
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tlynnburk
Journeyman
Reged: 02/01/04
Posts: 88
Loc: ohio, USA
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My doctor never gave me zanaflex. It sounds like it worked for you.. SInce I quit the hydro I have been looking for something else for the pain. Maybe I will call the doctor Monday and see if i can get a script of that. Anything would be better than the pain i am going through now.
Teresa
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Bathil
Journeyman
Reged: 11/03/03
Posts: 74
Loc: California
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I have had TMJ for 20 years since I had surgery at the ripe age of 14. I have pretty much accepted that I feel like Best if kept off the board all the time. NO amount of hydro ever gets rid of the headaches, jaw pain or neck pain. I have tried Zanaflex and did not find that it helped. I have a script for valium which sort of helps but like one of the above posters..for ohhh about 60 mins then back to " normal" I have been working with my dentist to get a custom splint but honestly my insurance does not cover this and I simply can not afford to do it.
I had to choose between having my CT surgery on both wrists before having my TMJ splint made. I choose the CT as I was unable to work, seeing as I have had the TMJ for 20 years and the CT only really got unbearable this last year I felt it was the better choice.
Do I want to live like this for the rest of my life? no not at all. I hate it. I hate how I feel, my dentist and I speak at lengths about this and my ortho who did my CT wants to discuss surgery. No way will I ever have that surgery again. I have posted this so many times. I know that the surgery has most likely changed but the basics remain the same.
I lost over 30 lbs when I had my mouth wired shut. I developed over 20 cavities in my teeth as all I could clean my mouth with was hydro peroxide... yes that was rather horrible itself. I had braces twice and 3 retainers after surgery. Yes I know braces themselves have changed leaps and bounds since then but my memories are what keep me from even thinking about surgery.
So many things can attribute itself to TMJ. Lack of energy, restless sleep, IBS, headaches, migranes, neck pain, back pain, just plain ole irritability.
I hope that each and every one of you finds something that works for you. I truly do. Please talk with your dentist and if you don't like their answer then keep on going until you find someone who can help you. Mine right now comes down to financial issues, it is really simple as that. I may try that link someone else posted . A few of you who have mentioned this before know I jump in and state my issues with TMJ. I don't mean to sound so negative but again my stituation is not the norm.
Again, I hope all TMJ sufferers find relief and solutions. Hydro does not really help much at all, its definately not a a solution, simply masks the isssue. Muscle relaxers such as valium ( I find the most helpful but does not last long) again will help but are not the solution. They will not cure it.
Bathil
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bulldog44
Newbie
Reged: 03/10/03
Posts: 33
Loc: Columbus,Ohio
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I'm certainly no TMJ expert but the inexpensive drug Robaxin is prescribed for problems as dire as blood poisoning that cause severe jaw clenching. Might want to check it out.
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bulldog44
Newbie
Reged: 03/10/03
Posts: 33
Loc: Columbus,Ohio
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I'm certainly no TMJ expert but the inexpensive drug Robaxin is prescribed for problems as dire as blood poisoning that cause severe jaw clenching. Might want to check it out.
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hope46
Journeyman
Reged: 11/08/03
Posts: 79
Loc: CALI-DREAMIN
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Have you ever worn a splint before? The reason I ask is because if you haven't, a trip to the local store that carries quality athletic mouth guards might help you out....I'm a dental hygienist (24 yrs) and our office recommends that before you spend thousands of dollars on tests and hundreds more on custom splints...try this! Buy the thinnest mouth guard you can find, boil or heat it as directed, then bite on it and make yourself a temporary splint. After a couple of days, you will be able to tell if it is helping . This might be enough to keep you comfortable until you get your finances in order. Believe it or not, some folks I know can manage for years on these conservative-home made splints.....You could definitely sleep in it to prevent grinding or clenching at night-a tmj no-no! It would be worth a try and you'd only be out a few dollars! Good luck ! Hope 
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dmtnet
Newbie
Reged: 11/11/02
Posts: 29
Loc: Southeast US
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I have a night guard splint I wear it at night its like a athletic mouth guard with a few tweaks. I just talked to the doc and he is calling me in some Zanaflex to give it a try. Yeah I've tried Robaxin without any results that I would consider significant.
I'll let everyone know how it goes and keep you updated.
Thanks again very all the advice and stories.
Edited by dmtnet (08/16/04 11:33 AM)
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dmtnet
Newbie
Reged: 11/11/02
Posts: 29
Loc: Southeast US
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I am going to have to give my recommendation for Zanaflex, it makes me tired as hell but from my understanding that is going to be going away with time. But it works! It really works. Not a miracle drug but lets me cut down to a half of hydro twice daily. Its worth the try to anybody considering it.
Thanks for the suggestions everyone and hopefully this will hold while I wait for this splint to do any good.
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