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TMJ Disorder -TemporoMandibular Joint Message Board
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Old 03-19-2003, 12:26 PM   #1
Join Date: Mar 2003
Location: Canada
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harley_girl HB User
Question what do we do?

HI Guy's

Im new here, my sister Kierra actually posts here but in the last month or so she has gone downhill. The doctors have almost have he off he medication which I don't think is good cause she is in sooo much pain. She can't even get out of bed. Kierra is going for splint therapy again but this time hopefully a better specialist. Do any of you have any sugg, on how we can help her, she has family and that but she tries to push us away and can't or won't see that she will get better...PLEASE HELP ME
Thank you reading.....Will keep you posted

Old 03-19-2003, 12:44 PM   #2
Senior Veteran
Join Date: Jun 2002
Location: New Jersey, USA
Posts: 630

It is very nice of you to be concerned about your sister.

It is important to give her as much support as possible.

WHy can't she get out of bed? Is she experiencing spasms?

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Old 03-19-2003, 01:42 PM   #3
Join Date: Mar 2003
Location: Canada
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harley_girl HB User

Hi Pinky

I think the reason she won't get out of bed is that she has lost hope. The doctors didn't discover that her migranes were caused by her TMJ and was basically abused by the doctors..not the way that you think but, by saying that she was drug seeking, needed to go to drug rehab, attention seeker, you name it, they said it. They have cut her meds drastically (SP) she was on 100-150 mg of demoral every 4 hours. They tried her on all kinds of meds. morphine, tylonel 3, 4, Imovane, Tryptine meds 120 diff meds (walking pharmacy lol) she has now been cut down to 50 - 100 mg demoral a day with tylonl #3 which doesn't help her at all. She won't eat for the fears of making the migrane worse. Any help would be appreachated
Sorry my spelling really sucks
Thank Karen

Old 03-19-2003, 02:07 PM   #4
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Location: San Diego, Ca.
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sunshine123 HB Usersunshine123 HB Usersunshine123 HB Usersunshine123 HB User

Hi Karen: I'm so sorry for what your sister is going through. It isn't right that her Drs. cut her meds. so much. Why do Drs. always assume that all we want is to become drug addicts? It isn't right. Thank God that she has you and the rest of the family to help her cope, even though she's going through such a bad time right now. I'll be praying for her that she gets the help she needs. Hugs, Sue

Old 03-19-2003, 05:36 PM   #5
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TiffanyAnn HB User

Hi Karen:
Your sister is so lucky to have such good family. I wish I had someone who cared about me that way. You know, I bet your sister would feel 100% better if she went to those "doctors" and told them off good time. That always helps me feel better. They are blood suckers feeding off their own for profit. Heartless pieces of trash that they are. Stay by her side and don't let any doctors say hurtful things to her and if they do tell them where to go and how fast. Let us know how things go.

[Your message has been edited some, to clean the language up a bit. Please try to avoid these in the future - that denote human waste. We are now also asking members to refrain from using cuss words. Thanks for your cooperation - Well-come Moderator.]

[This message has been edited by Well-come (edited 03-19-2003).]

Old 03-19-2003, 07:02 PM   #6
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sunshine123 HB Usersunshine123 HB Usersunshine123 HB Usersunshine123 HB User

I agree with you Tiffany. I've always wanted a sister, but ended up with 2 uncaring brothers instead. If it weren't for my husband and my friends, I don't know what I'd do. Sue

Old 03-19-2003, 07:05 PM   #7
Join Date: Feb 2001
Location: Ontario, Canada
Posts: 390
Marlene HB UserMarlene HB UserMarlene HB UserMarlene HB User

Hi harley_girl,

Yes, I think I remember Kierra - from B.C. right? I remember the horror stories she posted about doctors thinking she was a "drug-seeker"!!
About the only "off the top of my head" advice I can suggest is for SOMEONE (perhaps you) to go with her when she sees this new specialist for splint therapy! From my own experiences, it is extremely helpful to have someone with you who can "absorb" all the information the doctor is giving her because chances are, in her present condition, she won't be able to understand/remember what's being said.
As a bit of a "bandaid" solution, ask this new specialist if he/she can prescribe a low dose of an antidepressant (or if he/she thinks it would help)? It's VERY easy to become depressed/hopeless when you're in that much constant pain, and difficult to actively participate in making decisions regarding your own treatment. Support is EVERYTHING to a TMJ sufferer.

Hope this helps,

Old 03-19-2003, 07:47 PM   #8
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rhody HB Userrhody HB Userrhody HB User

I read these posts so much and feel so sorry for you all that have this TMJ pain. I used to have strange pains (but not TMJ) - that I later in life linked to my mercury-silver dental amalgams. Few doctors believe me - but believe me - I know what it feels like to be so bad that you don't want to live anymore.

Over twelve years ago, what I did before I linked these problems to my amalgams, was explore natural cure. What this is, is trying to put the body in the best state to cure itself - finding the perfect set of conditions. So, I first started with vitamin supplements and minerals - later I changed to a healthy diet. Then after my sickness progressed to a critical level I progressed to taking herbs - lots of them. I made my own herbal teas, with bulk herbs that I purchased at a healthfood store. The healing was extremely slow - but small improvements were noticed.

Now, what path a TMJ person should take, that is not curable by doctors is hard to say. But what someone might do, is explore natural cure. Do every positive thing to be healthy with exercise, diet, herbs, and removing toxins. Positive things can also be reducing stress and the support that you all give people is wonderful.

I know what some of you mean, when you speak of doctors. I've had "my belly full of them" too. Now, they don't believe me, since I've cured myself of these pains. It took me almost 20 years from the time that I changed my diet to now, to find this health. I'm still experimenting with anti-mercury foods....and advancing still further.

I wish some of you could find this natural cure....oh how I wish that you could get better.... I know a lot about herbs, if anyone is interested. I don't have a clue if they would work for TMJ...but I didn't know they would work for me until I tried them. I was so desperately sick that anything was better than the treatment that I was getting from doctors - so all barriers came off - and I ventured into the world of "alternative" medicine.

Old 03-19-2003, 11:33 PM   #9
Join Date: Sep 2002
Location: Upland, California
Posts: 376
thisstarr HB User

Hi Everyone,

Harleygirl: I really feel for your sister, the best thing I can tell you to do is be there for her. Go with her to her appoinments, if she yells at you dont take offence, and no matter how far she tries to push you away, dont let her. I was doing the samething. At one point I was in bed for weeks, I was so sad and depressed and just wanted this pain to end. I really didnt know how much longer I could take this pain!

Im only 23, and it was and still is very hard on me. I really wish you the best of luck with your sister, your a good sister I wish I had a sis to look over me! Let us know what hapens!

RHODY: Hi, remember me from the headache board. I am going (well try) to get the mercery fillings out of my mouth soon. I dont know how I going to do it since I can barly open my mouth, but when I am all done with getting the mercery out, would you tell me how you detox my body. I really think I have mercery poisoning and it is added to my pain, how long did it take for you to feel good again?

Take Care,

Old 03-20-2003, 05:10 AM   #10
Join Date: Mar 2003
Location: Canada
Posts: 8
harley_girl HB User

Hi guy's

I am so glad that Kierra told me about this board and how helpfull all of you have been. She is very lucky to have all of you
I must confese though, when my sis first started getting headaches, I didn't think anything of it, HOW DO YOU GUYS GO THROUGH THIS PAIN ALL THE TIME???. Just watching my sister in pain makes me hurt. She has tried to push us all away, including her soon to be husband and im not sure how much he can take. We are all going to try and get her to see a doctor here as soon as possable, while is't still coverd under our medicall
PS: What is withdrawl like, I think Kierra is going through it..what can I do to help her with that, and to get her out of bed?
Im so sorry that I am rambling, I just feel useless since all I can do is watch her and not understand or comprehend for that matter all the pain she is going through
Thank you

Old 03-20-2003, 06:43 PM   #11
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rhody HB Userrhody HB Userrhody HB User


I started feeling better, at the point when my first tooth that exposed the amalgam, was temporarily fixed (this was a little more than nine years ago). It was two or three months, until I had all eight dental amalgams removed and replaced with "white" fillings. I felt better, but was disappointed at first that I wasn't completely better. So, then I experimented with anti-mercury compounds and got extremely sick (after about a three week period of taking these pills). This is something that I don't recommend anyone do. I was so sick that I thought I really had done it - that the end was near - really.

So, I just kept eating my natural foods, and taking my herbs. I figured that I should be patient and to be just glad that I was getting better slowly - rather than taking part in any risky experiments or chelation therapy. About five years after I had these amalgams replaced, I noticed that I was getting slowly better, year by year.

The last two years, I have been experimenting with fresh cilantro - for a few months at a time. You can read about it from the internet. Once source, said to not start eating cilantro, until all the source of mercury (from the dental fillings) were gone. The cilantro will move the mercury around and also out; it passes through the blood brain barrier - which is important - to remove mercury from the brain.

When my pains intensifed, after my tooth broke and exposed one amalgam, my approach with all of this, was to have the amalgams replaced for cosmetic purposes. Afterall, I couldn't prove that the amalgams were causing me all those problems at that time, but everything sure pointed in that direction. So, for anyone considering this, do it for cosmetic purposes - as a minimum. If you are fortunate, as I was, maybe you'll get your health back too. Some of us do improve, as you can read from the internet.

Another reason to remove these poisonous fillings is this. Be satisfied that you don't have this source of mercury in your body anymore. Now, with this latest batch of cilantro that I take every day with my food, the painful symptoms are less and less. Now, not only can I run nearly 20 miles a week, but I'm able to run faster for a more continuous period of time. I'm not done yet. I plan to see if I continue to improve. I was so sick many years ago - and as far back as 1978 a doctor told me to not run more than a hundred yards. I'm sure a lot of you have heard my story before....

One more thing. I have heard that some people can also be allergic to these white fillings. There are so many different kinds and different kinds of cementing agents. I went to a naturopath to find out which materials were best for me. I don't know if this is really science - what I got from the naturopath - but the results for me have been very good.

Old 03-20-2003, 11:24 PM   #12
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Join Date: Mar 2003
Location: Pompano
Posts: 22
tmjinflorida HB User

I don't know how many of you have tried this but today I saw a massage therapist who does TMJ relief. I was skeptical cause I've been in so much pain. But she massaged my jaw, both from the outside and inside my mouth and although it seemed akward .. I felt better afterwords. She also massaged my neck and back since those get tensed up from the TMJ as well.

Maybe you could massage your sisters neck and back and even jaw.

Also it sounds like she needs an antidepressant like prozac, paxil or zoloft.

[This message has been edited by tmjinflorida (edited 03-21-2003).]

Old 03-21-2003, 06:22 PM   #13
Join Date: Nov 2000
Location: Montana
Posts: 491
Elaine HB User

Your sister could very well be going through withdrawls or maybe part of it could be depression. This mess would depress anyone. I have always managed to keep a half a$$ positive attitude but at times, I wonder how. I am so jealous of people who can eat anything they want. The only thing I have achieved is losing 30 pounds without even trying. If I lose anymore, I will blow away. Hope Kierra is doing better,please keep us posted.
Take care,

[This message has been edited by Elaine (edited 03-21-2003).]

Old 03-23-2003, 08:17 PM   #14
Join Date: Mar 2003
Location: Canada
Posts: 8
harley_girl HB User

Hi Guy's

Well, we took kierra to the emergancy room, they gave her some pain meds there and gave her some to take home, enough to last for awhile anyway's. We are massaging her neck and face and stuff and she say's that it helps a little so we'll keep doing that, but it is so hard when she is pushing away. How can we make her eat soft food? she is so skinny now, hasn't eaten in like 3 weeks, only drinks water. Im going crazy here, she will be getting a splint or something next week but I have no idea what that is. Will she get better soon? how long till she will be ok.
The only reason why im asking is because I don't want to give her false hope. We had to hide her meds on her because she is so depresed, she has anti depressents now but there isnt' much of a change, stay's in bed all the time.
Anyway's im sorry that this is all over the place, im just lost on what to do.. Thank you for all your support here, love you all


Old 03-23-2003, 09:27 PM   #15
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Posts: 111
amateurdoc HB User

I know you said that she has tried numerous medications, but it may be that she has not yet hit the right one or right combination. My wife was in much the same boat as your sister up until this week, lying on the floor in agony. She was referred to a pain center where we saw (unbelievably) a very caring, very knowledgeable doctor who diagnosed her with CRPS, complex regional pain syndrome. It is a problem with her sympathetic nervous system, usually caused by injury or trauma (including muscle spasms). Her nervous system is "out of whack," or out of balance. What always threw us when the docs would say her problem was muscular in nature was that physical therapy(massage, TENS, etc.) did not help, but instead almost made things worse. This was due to the nerves being "shot." He prescribed for her Xanax .5mg twice/day (though she can double that if need be), Gabitril 25mg twice/day now, to double later, and tenormin (for tremors.) He also gave her Lidocaine patches to wear at night, to be absorbed through the skin and into the nerve endings to calm things down. This woman used to count the minutes until she could take her Ambien to get a couple hours sleep. Yesterday, she came up to me, after getting steadily better for two days, and said "I currently have no pain." We're not counting our chickens yet, but this kind of change in such a short amount of time is remarkable, so tell your sister that, and tell her not to give up. There is someone out there who can help.

BTW, we're guessing her injury was either sitting in a dentist's chair with her mouth wide open for three hours, or to the muscles in her neck caused by carrying her weights, on the same shoulder (same side as worst pain), into exercise class six days a week.

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