Medical Questions > Conditions and Diseases > TMJ Forum

Would rather die than live with TMJ. (Page 3)


August 27th, 2010
Experienced User
I do not blame you for having a suicidal thoughts. I never thought of killing myself but when I was in severe TMJ pain I just wanted to die. The pain felt like my head was going to snap out of my neck. I'm still in pain with anxiety but much less compared to a few months ago. Having TMJ sucks. I have not been able to work for months already and now I'm getting very nervous financially. I'm seeing a prostodontist and a TMJ specialist now which are costing me so much money I do not have. I am so desperate to get well and get back to my normal life. My friends do not understand how much suffering I'm going through,especially my best GF. I'm very afraid of my future if I do not get well and unable to work.The last few days, my head feels like it's swinging in the air, headache, neck tightness and pain and facial pain. I'm wearing a splint now which the doctor is adjusting every week and each adjustment either my TMJ symptoms get worst or get better. It's been months already, when is the end?
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replied August 27th, 2010
Thank You JMR for starting this post. I can identify w/ so much of what you said. How are you doing now? I hope you've found some more support and some respite. I am a 30 year old female from SC and have been living w/ almost daily chronic TMJ pain for over 6 yrs. I really need some TMJ friends - so anybody who is in a similar circumstance - PLEASE GET IN TOUCH! Smile The pain started out as a constant piercing on the left side that lasted for several yrs. Things I've tried: first - wisdom teeth removal, meds for pain, muscle relaxers, anti-seizure meds, over-the-counter Advil Migraine (gave rebound headaches but worked ok for a few yrs), mouth guard (wore every night for 4 yrs) massage: deep tissue, myofascial release, etc., acupunture, chiropractic, prolotherapy, raw and anti-inflammatory diet, exercise, hot/cold, inversion table, low-stress but isolated lifestyle. I could write a book on what an experience this has been including all the emotional pain that comes w/ losing friends and a social life, being absolutely desperate and having major survival problems, trouble w/ finances, trouble holding a job - I just spent a year in massage school and hope that I will be able to at least handle doing it part-time. MASSAGE is the most natural thing that has helped the most. A little too tired to post anything too lengthy...as I am running on like 40% as usual. Generally, the pain has gotten better and I have learned a whole lot about health through this process. And actually I have gained new friends - people who are really interested in the body/pain/health...etc. I'm trying to hang in there....need help figuring out insurance - SC doesn't cover TMJ treatments. Would like to talk to someone who lives in a state that covers TMJ treatments. AGAIN, ANYBODY WHO HAS HAD A LOT OF TROUBLE WITH TMJD WHO IS SEARCHING FOR ANSWERS, PLEASE GET IN TOUCH. THANKS!!! GOD/Divine Power bless everybody!
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replied August 28th, 2010
First, I'd like to thank you for your post. Anyone who has gone through chronic pain and the endless search for treatment and relief understands that we all hit some very challenging lows and despair at times. I am moved by the compassion of the people on this site. I also feel strongly that self judgement is detrimental to healing. It is important to be soft, kind and friendly to oneself during this. I thought it was profound to read the poster who said that this was coming to terms with letting go of normal...this has been what I have been grieving for some time...looking at others, thinking they don't have to deal with this. Still, I look for the path, and for me letting go of normal will hopefully be replaced with embracing what is real, and accepting myself in whatever state that will be. Really, the fearful thing is to be struggling through the rest of life....if I can replace with self acceptance, doing the best I can, managing my pain, and loving myself, if I can accomplish this, I've led a good life, however long it may be.
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replied August 28th, 2010
Hello 2 netta:

What percentage of patients who come to you do not improve with NM treatment? I'm assuming not every one is a success story. What are the variables? This sounds very evangelical to me at times...I need some balance in being able to look at this option as credible, if this makes sense.

As I've mentioned before, I've started seeing a dentist (not NM) who is fitting me for an orthodic and potentially braces to follow. After a 2 hour diagnostic, taking molds of my bite, extending my jaw (hyperextended...still don't know what that means) etc., I returned to work in excruciating neck and shoulder pain, seized up from the work involved in simply opening and extending my jaw for these molds and tests. 1,500 in the last week on CT scans, diagnostics and consultations. It's take three days to get back to manageable pain levels.

Would like your honest appraisal of the above. Thanks.
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replied March 15th, 2011
I NEED TO TALK TO YOU!
To: JMR12686

I would like to talk to you about TMJ. I understand that a person questions the "Quality of Life" that one has during such a painful disorder. People that do not have TMJ would never understand the pain involved. I have never talked to anyone directly with this disorder, and I have been experimenting with certain things to make my own pain better I would very much like to talk to you to see if these help you as well. I figure two heads are better than one figuring out this stuff. And I feel very alone with my TMJ. I have been in lockjaw for 1.5 yrs. Noone around me understands it or even wants to hear about it. So could we please talk? Please add me to your messenger. I hope you haven't committed suicide, I wouldn't blame you really if you did, I have thought of it to. But maybe we have this disorder because we are smart enough to figure out how to actually make it better?
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replied October 4th, 2011
Experienced User
I don't know exactly what people mean by TMJ - I have TMD. Its chronic bruxing I developed from untreated chronic pain after I broke my neck. My TMjoint isn't the only thing that I wrecked with TMD.

Some of the treatments like massage, dental appliances, relaxation and exercise can really help. I tried various Botox off-label injections, and more, too. I had so much pain, spasms, and headaches that I had to drug myself semi-conscious daily, and since that was killing me anyways, suicide seemed almost logical sometimes.

EMG is the only proven diagnostic tool for TMD. It's as straightforward as a sleep study is for apnea.

I got out of bed like Lazarus after getting Grindcare, which not only diagnosed me accurately, but interrupts the bruxing so I get restorative sleep again. I think I posted about Grindcare in this forum before and 2netta went nuts saying I was a Grindcare salesman or something. I'm not.

Google Grindcare. See if you can rent instead of buy. Why? Because it's a good idea to diagnose BEFORE treating (such a novel concept, huh?) Some migraineurs who have assumed TMD without proof will be upset to find out they don't have TMD, but EMG and feedback like Grindcare's was a lifesaver for me.

Good luck. And I am not shilling for Grindcare - they don't need me, and you can research TMD and Grindcare on your own, like I did, starting with googling Grindcare.

Until Grindcare, there was no convenient, nano-sized EMG machine that records sleep studies for bruxism. The science is as straightforward as oxygenation/respiration sleep studies are for diagnosing apnea. But convenient, double-blind studied EMG for TMD is very recent. So an awful lot of doctors and patients have had no choice but to diagnose by trying different treatments and seeing if they work. And they have invested a lot in their treatments and regimens, so they might not be psyched to see an EMG diagnostic tool shrunk to the size of an ipod nano. That spits out a little graph in the AM to diagnosis TMD or not.

Some doctors even want to just make a quick buck botoxing you for TMD, without even doing a accurate diagnosis first! Check out Dr. Rivkin on youtube in NBC news or thedoctors show - it's scary how fast off-label, unapproved, untested Botox is happening. Botox for TMD is at best temporary relief, and at worst does permanent damage - if you want to try a drug treatment as a shot-in-the-dark diagnostic tool, you're better off using a muscle relaxant than Botox. But muscle relaxants aren't an effective long term treatment nor cure, even though a lot of things can temporarily interrupt TMD, making you think you've finally licked it, only to have it come back. The best diagnosis of TMD is EMG. Again, the best diagnosis of TMD is EMG.

Good luck. Chronic pain chips away at our thinking, creativity, memory, and hearts. Treat chronic pain!
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replied May 3rd, 2012
I have followed your submissions on TMJ/Bruxism for some time and have found your information & description of your experience very helpful. I have suffered many of the symptoms for a considerable period of time and can understand the feelings of dispair people experience. My symptoms have been nothing like as severe as many of the subscribers on this topic, though nontheless intractable. I have had a number of splints which have had only moderate impact on the TMJ problem.
I am currently looking at the grindcare unit though I will have to purchase to proceed as no rental option is available in Ireland. However , another option I have considered is an approach called a taste based approach involving a brace like a childs retainer with a capsule of unpleasant liquid which wakes up the bruxer whenever they clench (see Nissani ) It is not commercially available , requiring the patient to construct the unit & capsule with the help of a dentist/technician. The reviews on the Nissani trial seemed promising in that taste aversion seemed to be capable of changing a neuromuscular response.

Has anybody on this forum attempted this approach.
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replied May 20th, 2012
Experienced User
I am sorry I somenow did not notice your question until now. I remember the first dentist who patented the idea for a splint with a hot chili pepper extract, that bruxing would burst. I remember thinking how very desperate that such caring dentists are - they get dumped with patients that doctors will not treat, since insurance doesn't yet cover non-invasive and effective dianostic tools and treatments. Some of these patients eventually develop problems (chronic pain, damage) that could have been prevented.

When enough studies have been done, so that the percentage of people with TMD bruxism is known, and studies show that non-invasive EMG sleep studies at home are known as the gold standard, I'll feel happier. I even wonder, since it would save insurers so much money, if it will become like apnea - straightforward to diagnose and treat. And with miniaturization and good software, it looks like chronic bruxers won't have to be tied to disruptive apnea machines, which solve a very serious problem, but are not exactly sexy.

I don't see sticking things into your mouth, even bad tasting things, as horrible in itself - if something works, and is less inconvenient than the alternative, it might very well be worthwhile doing. That's exactly the kind of reasoning that make apnea machines worthwhile.

I have 3 reasons that I would never use an appliance like the one containing a capsule of bad tasting stuff, to stop bruxism:

1. As my link to the National Institure of Health explains, none of the appliances have been shown to work to stop bruxism. If I am bruxing humdreds of times a night, the first burst of the capsule wakes me up, disrupting restorative sleep patterns, and then is useless, and could cause more problems. Restorative sleep is critical to health, and disrupting it, not so good. (I am not against a thin, slightly flexible bite guard to protect dental work and teeth until you can rule out, or diagnose and stop TMD bruxism).
2. Without EMG, you not only can't diagnose accurately - you can't see if you have stopped the destructive TMD bruxism.
3. Sticking appliances in your mouth to stop bruxism can temporarily interrupt TMD bruxism, along with nighttime muscle relaxants, Botox, and a host of other things. But you develop tolerance, Botox seriously will reduce needed jaw bone density, etc. I just haven't found anything else besides EMG sleep studies at home that can save you the potentially serious problems and expense of starting treatments without EMG diagnosis and monitoring. And that double blind studies have shown will not interrupt proper sleep patterns.
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replied October 1st, 2011
Listen to this post. I was in the military and I can tell you right now what you need. You need to get a personal trainer. You need to get back into shape right now! I have TMJ starting from 2009. Lucky I have a mild case and it has gotten better. There is hope. I saw doctors in Europe. They told me that there was nothing they could do because the answer was within me. My jaw has to shift its self back into place. Once I started wearing a night custom night guard, boom! It got better. As soon as I started doing neck stretches, boom! It got better. I am getting in shape like how I used to be in the ARMY and its getting better. The disc is starting to move back into place. I believe in my heart that I am already cured. You need to understand that it took years to get into this condition. It will take years for your jaw to be completely fixed. You need to hang in there. People love to tell you that you can't do things. If you want to do something then just do it! I want to sing in a band. I want to sit in front of my computer and I want to live a good life. I am going to and so are you. When I was young I wanted to commit suicide from depression. I made it through and learned that it was not the way. You need to get into shape and think about how youre going to get the treatments you need. But to be honest doctors cant do much because its your body that needs to be fixed by you alone. Once you are on track try then you could try and join the ARMY. They have decent healthcare for this and will get your body into the shape it need to be in. You need the energy in order to survive this. Do what you have to do, but don't let this beat you. I won't and neither should you. You can have, do, or be anything you want... I don't care how big it is! Use the law of attraction to order what you need. Get the movie the secret. It will change your life. Best of luck to you. We will make it.
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replied October 14th, 2011
Hey everyone -- I just stumbled upon this thread while searching for "TMJ marijuana". I read this post and while I felt sad for the poster, I felt even worse since I totally understand what he's going through. Oh, my symptoms are somewhat different, but the net effect is the same.

I've been clicking for 13+ years, but it was ten years ago when the really bad symptoms started, and the fog of mind started. Over the last few years I've tried everything under the sun to cure this (acupuncture, thousands of dollars of dental appliances, massage therapy, green tea, raw vegan detox diets, etc.). Nothing worked. NOTHING. Absolutely nothing.

Suicide has occurred to me many times, in fact even today. Why keep going on with life when each day is an agony that no one understands? I feel like someone wrapped a tourniquet around my right TMJ and cranked it 3-4 times. I can't hold a smile for more than 2 seconds before my right jaw starts shaking, as the muscles are spasming constantly. I just started using a LaserTouchOne and am applying all sorts of laser/electricity to it, but alas, it did nothing to alleviate my symptoms.

One thing the LaserTouchOne did do, however, was show how much I can make the symptoms worse. If I cranked up the electricity more than necessary and placed the laser right at the front of the TMJ hinge, my entire right side of my face would clench SUPER tight. It was like an instant reaction. So this confirms that my pain -- which feels like my entire face is tight -- is related to muscular tension/spasm.

For many people, this can be treated through various therapies. For me, it's chronic. 24/7. Every day of my life is the worst day of my life. Yes, today is the worst day of my life.

Something happened recently that was both amazing and awesome. I saw a holistic dentist to take his thoughts on my pain, and he suggested that I was having a chronic oxygen deprivation due to having a larger tongue than my throat can handle -- so he recommended an oral systemic balance (OSB) to alleviate it. Of course he doesn't take insurance so the price was $8,000 - $14,000. No guarantee it will work. Sorry, I'm not buying snake oil this week. But the oxygen deprivation -- the breathing - this gave me new hope.

For the last few years I've been really interested in meditation to help alleviate my troubled mind -- like the poster, I'm chronically stressed, socially anxious, always feel like the world is about to end. Even when I hit the home button on my iPhone, I can feel my entire body tensing up. I can't relax to save my life, except during and after sex -- but since I'm so stressed out and hate myself so much, not many women are drawn to my socially awkward attitude and hating of the world (which really means hating myself, yes I know). But I don't know how I got here -- I sometimes think the TMJD led to this pain, which led to my downward spiral, but then I think it was an earlier deteriorating mental state that started the clenching, and then things spiralled afterward.

Anyway, back to point: despite living the worst day of my life today -- I so want to tell everyone at work how much pain I am in during every single moment I interact with them -- I still have hope.

There are three areas I am going to be focusing on starting next week: yoga, meditation, and breathing. If you know about these, you may realize they are all connected and have one thing in common: breath.

So, I am depressed due to various issues in my past that led to my current state. OK, that's not a shocker. I'm sadly one of those people where drugs do nothing -- I have tried every anti-depressant on the planet and nothing works for me. I can't smoke marijuana because of my job and our stupid US law on it. And I can't stand talking to shrinks anymore, they just don't seem to care but more importantly they don't help. So I'm trying to work my way through this on my own. I'm reading a book on a Mindful Guide through Depression, which I am really enjoying. It speaks to me. It's not just a meditation book, it covers MBCT (Mindfulness Based Cognitive Therapy). But a part of the book mentions that being depressed, which is really just a cascading series of negative thoughts that repeats indefinitely, is effectively the same type of stress on the body that we would feel when we are being hunted by a saber tooth tiger. The brain can't tell the difference, and in our case, the tiger is always there. That feels like me: you know how you feel when you know you're about to get hit, like in a kickboxing class? You tighten up, clench your jaw, brace for impact? That's me 24/7. Even right now as I type this, my right TMJ is locked sooooo tight. And everyone thinks I'm crazy for reporting it.

Anyway, so the book talks of a mindfulness-based meditation approach to curing depression, which I believe will help cure my TMJD. I tried meditation a few months ago, and did it every night for ~14 days. I definitely had some amazing dreams and felt different by the end, but I didn't keep up with it. I'm the kind of person who excels with P90X DVDs or Crossfit since I don't have to think about it beforehand and I can stick to a schedule. I think it's the same for meditation. So I'm going to do 8 weeks of guided meditation using the CD in the book (I have 3-4 other CDs as well, but I want to stick to this one for now).

But that's not all -- yoga can help also. Specifically, at least from my research, Kundalini and Anusara yoga. I like Bikram for the stretch and sweat, but I want something more meditative, and from what I've read Kundalini and Anusara are the best for me because Kundalini heavily stresses breathing/meditating, and Anusara is reportedly good for 'healing' people. Just look at their members, everyone has a smile ear to ear and talks about how amazing enjoying each moment of life is. I'm sitting here thinking, if you had my pain, you wouldn't be smiling every day.

God, I'm getting angry just writing this post -- I'm getting more stressed thinking about how miserable this situation is.

Anyway, solving my problems by trying to think my way through them has been the root cause of my failure, at least according to this book. I need to just sit there and BE, and stop trying to DO and trying to get myself from state X to state Y where the grass is much greener. Just be there, breathe, experience the sensation of that moment. When I do this during meditation and let the TMJ pain come into focus, I can actually see little bolts of light coming from my TMJ. It's bizarro.

Finally, breathing itself. My holistic dentist, before prescribing me a treatment plan of a $15,000 fancy night guard, told me to do 20 minutes in the morning and evening of heavy breathing: in through the nose, out through the mouse, breathe through the belly, 5/5 cadence (5 seconds in, 5 seconds out). I did this just ONCE and I actually felt pretty good. I haven't kept up with it of course, but I do have hope.

Anyway, this is my latest Master Plan for treating this old foe of mine. I'm tired of not living life because of this pain, and for me the choice is really either yoga or suicide. I feel people on this forum will understand why one with terrible TMJD would choose suicide to escape the physical pain. I don't judge you. But I'm there with you -- I think there is hope. I honestly am starting to believe that TMJD is, for most people, a psychological problem rooted in your mind. The stress in the mind leads to the clenching, which leads to all sorts of TMJD problems. For some people, massage therapy or acupuncture will alleviate your stress, but us poor souls for which it does nothing -- we need to help ourselves.

The healing power of life is within each of us. I believe that--I just need to act on it.

I hope I'm right, because I don't want to be at a shooting range again and repeatedly have the thought, it could be all over in a couple of seconds...

I believe life is worth living, but I think we as a culture lack a proper, holistic approach to curing our ailments. Our diets are terrible, we treat our bodies horribly, and our minds are adapting to technology and society that they had never seen before in our evolution. I think it's time to take a cue from the ancients in the east. People have been meditating every single day somewhere in the world for millenia - and it seems to have worked for them. So why not give it a shot? It's free.

I'll report back if I'm successful. It would help to have a job that didn't require me traveling all over the world nonstop. But as that saying goes, where you go, there you are.
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replied October 14th, 2011
Experienced User
Rule out TMD before assuming various treatments will work
Armyof1 and futureboy,

Your focus on exercise, breathing, and holistic health is inspiring, and will only help you, since without enough healthy living, it's hard to improve your quality of life, whether you have TMD or not. Especially inspiring is that you both have rejected suicide as a response to chronic pain.

I still don't know what people mean by TMJ or TMJD, although I suspect that it may often be TMD. If so, remember that EMG is THE documented diagnostic tool, and I recommend you rent instead of buy, so you don't spend $$ on treatments for disorders that you don't have.

Splints, ruling out bad bites with a simple check when seeing a dentist, and all kinds of TMD therapies have their place, along with stress reduction, exercise, ruling out apnea, etc.

But nothing you can do consciously will stop TMD. TMD is by definition when bruxism becomes chronic, subconscious, neuromuscular activity. It can sometimes eventually cause damage to the TMjoint and surrounding tissues and nerves, which can eventually lead to pain and reduced quality of life.

We all have passing bruxism many times in our lives, and even TMD can take decades to do enough damage to cause pain. It is worth it to rule out or treat TMD, if you suspect that you have it.

But TMD is something that has only recently become easily, definitively, diagnosable and treatable. And as straightforward as a sleep study to diagnose or rule out.

So, before people embark on expensive enough treatments to buy a house (which I did before easy EMG), I recommend that they rule out a bad bite, and rule out TMD. I used Grindcare, which anyone can google to consider.

I am always worried when I see people assume that attitude adjustment or stress reduction is the answer, since so many doctors undertreat TMD by making this incorrect assumption. And before TMD develops, exercise, attitude, and many other treatments can sucessfully prevent TMD from setting in, I think.

But many people with TMD suffer needlessly, since diagnostic tools like EMG and treatments like feedback have only recently become convenient and accepted for TMD, and people don't know about it yet, and get diagnosed or treated ineffectively.

I was treated as a depressive, a malingerer (whiner), a hypochondriac, and a chronic pain patient, when I could have been treated effectively instead, which I did myself, as soon as I could do sleep studies to show my doctors.

Your quality of life is only improved by the things that you are doing, futureboy and armyof1, and are key to feeling good. Just don't ignore TMD if what you're trying doesn't stop TMjoint and related pain amd loss of function. And avoid expensive treatments, or unapproved ones like Botox, if you haven't ruled out TMD.
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replied October 16th, 2011
You asked about TMJ/TMD. TMJ is just the joint, but sadly it has become the accepted term for the disorder (TMD/TMJD).

In my case I'm 95% certain I have TMD. The series of muscles in my right TMJ (not just the masseter) are constantly spasming. The entire right side of my face feels swollen or larger, due either to actual swelling or a form of muscular hypertrophy.

But I'm also fairly certain I can't cure this through any split I've ever seen. I clench, always, by default, but I don't grind. My jaw is misaligned with my mandible, or at least it feels that way. When I try to relax my jaw, I can feel the muscles on the right side cranking it back up.

I've had orthodontia twice over the last 15 years, although the first time was as a child and not due to TMD -- just fixing teeth. During that first period I had an upper mouth expander, which is easily the most painful experience I ever endured -- for 6 months, 1x/week, when a family member would crank it.

Besides the orthodontia, I spent the last 5 years trying to cure my TMD through various other methods, but several were dental. One was an inexpensive NTI-TSS, which went between my incisors. That did nothing. The next was a very expensive, 6-month treatment of neuromuscular dentistry, where they made a mouth guard that I wore 24/7. Every few weeks I saw the dentist and they had to make it bigger and bigger since it was not relaxing the jaw. After 6 months, $3,000 out of my pocket (and who knows how much insurance paid), the dentist basically threw up her hands and said, I'm sorry, I can't help you any further. No refund of course. Dentists are thieves.

The most recent appliance I have is your average, run-of-the-mill night guard. I wear it usually 16 hours/day, sometimes 24/7, not per my dentist's guidance (she only recommended at night), but my maxiofacial pain expert. I try applying heat + ibuprofen as well, but it doesn't seem to be helping.

On top of that, I also bought a $500 LaserTouchOne and have been trying it every day for the last ~30 days. The company is very professional and gave me an extension of their 30-day guarantee, to 45 days, and I am unfortunately going to have to cash in on that because it did not work for me.

Anyway, my point is that my bite is not the problem, at least not anymore. I have sometimes envisioned making an appliance I could wear at night that literally could not allow my jaw to move, almost like a lock. I could mold it to my most natural position, and then as I slept my jaw would not budge (it would try, but it would fail). Sadly I don't think such a device exists, and I failed attempts at molding two sports mouth guards to do the task.

Oh yes, I also had botox injections into the masseters about 9 months ago (20 units in the right, 12 in the left). $700 and 1 month later, I felt absolutely no difference. I may try this again when I get back to NYC, and simply crank up the botox, maybe like 30 units. I don't care if I can't move my jaw and I have to drink my food through a straw for a few months, if it takes away the pain, I would do it. I think those of you out there with TMD may feel the same.

But beyond all of this, my evolving theory is that all of the above simply treat the symptoms -- they are NOT treating the root cause. What's the root cause? In eastern philosophy, the TMJ is an area of the body that can store old, painful memories/emotions. Some postulate that these negative feelings and emotions are rooted there and the pain only swells from there, but to heal it, you must release the emotions and retrain your brain to positive thinking.

But ignore the eastern philosophy thing. I firmly believe that the muscles in my right TMJ spasm further when I am under enhanced stress. I remember having to give a talk one day to 1000+ people and I couldn't sleep the night before, and the pain was unbelievable. When I meet someone new and am in an important conversation, my jaw actually starts to twitch. Right there. They can probably see it. It's doing that because I'm nervous around people -- all people. I get terribly nervous when around pretty much anyone, including family. I dunno, I just have this horrible feeling like someone is going to yell at me or I'm doing something wrong. This is the root cause for me.

I'm almost positive -- I just need to prove it.

The reading of mindfulness-based cognitive behavioral therapy (MBCT) combined with various forms of yoga, so far kundalini and soon hopefully anusara, are ways to let the mind calm down, stop doing nonstop and just be -- feel the pain, rather than trying to ignore it or scheme up a way to heal it intellectually. I truly hope this works for me.

Now I've never heard of EMG, but I'd love to try it out when I get back to the states. In the meantime, I'm sticking to my theory: that in many cases of chronic TMD, cases where simple dental appliances fail, there is an underlying mental/emotional condition that causes the muscles in the TMJ area to spasm. Note that this doesn't happen to EVERYONE -- people store their pain all over their body. One good friend of mine has these peculiar pains in her lower back, and another friend gets super tense shoulders all of the time. For the former, she's undergoing PT and injections; for the latter, she gets a massage and she's OK.

That's my theory for me... maybe it will work, but honestly I'm out of ideas at this point. I've spent well over $15K of my own money treating this over the last 5-6 years, but I've exhausted EVERY treatment possible. I kind of wish I could walk up to the Mayo Clinic and they'd send me to their TMJD secret operations room where they poke and prod my jaw every few hours for a few weeks with various treatments, trying to figure out why it refuses to respond to muscle relaxants, botox, etc. But sadly no such clinic exists, that I'm aware of.

I have hope. I just did my first kundalini yoga, well the first 30 minutes (it was tough after a 7 mile run and other exercise).... the right area of my jaw, the TMJ, got really numb. I've read about this before, just google for TMJ kundalini numb and you'll see people talk about it. I don't know if it's good or bad, but it's different, so I'll take it.

This is going to be a slow play for me, but I have tried everything else -- it's time to try something that's more or less free.
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replied October 16th, 2011
Experienced User
Rule out (or accurately diagnose & stop) TMD, for TMJ pain
you have NOT exhausted every treatment. I spent many times as much $$ as you, on all of the things you tried and more. Without any relief until Grindcare's little ipod sized EMG unit - google Grindcare. You haven't even gotten an ironclad diagnosis, let alone direct treatment, and it's now cheap.

I clenched many many hundreds of times a night, with all my force. And it took a long time, before it caused pain (although I have all kinds of TMjoint damage). Nobody ever heard me grinding, because my TMD is silent clenching.

DO NOT get Botox again. I'm sure you can rent an accurate diagnostic tool like the Grindcare unit (you may be able to rent from an Asian distributor now). And the bonus is not only that this treats, but that you can see how well every morning.

Never Botox your temporarlis muscles, btw. Botox'ing your masseters is at best temporary relief, with permanent damage and side effects. There is just no excuse for Botoxing (especially without accurate diagnosis first) for TMD any more, which is unapproved and unstudied. Because you can treat more effectively than Botox, and also, you can get an accurate diagnosis before you start treatment now. In the bad old days, when you couldn't do nightly sleep studies as easily as programming a VCR, we had to try anything we could.

If you are desperate to try a treatment before diagnosing properly with EMG, like Grindcare's, I would reccommend a brief course of muscle relaxants (a doctor can decide if you have any conditions or other medications to nix using muscle relaxants). They aren't a viable long term treatment, and like any diagnosis-by-treatment, are not going to give you the ironclad diagnosis you need.

Even if you feel like a different person after a night or two of muscle relaxants, you need to get an accurate diagnosis, and effective treatment. I just don't know of anything as cheap, effective, nor optimized as Grindcare.

Saying that you will only try free things, when you don't even have a sleep study for diagnosis, might be premature. Some painful conditions, like migraine, do not yet have accurate diagnostic tools. So sufferers have to try out different preventatives, hoping one will work, and if they find one that helps, they assume that the diagnosis is migraine.

TMD has been like migraine until recently - you have to try out treatments, and hope that they work. That is not true any longer. I do agree that for TMD, non-invasive diagnosis and treatment is the way to go. You want to restore, not disrupt, your sleep, and stop damage and pain. Good luck.
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replied October 17th, 2011
I'm not opposed to trying out Grindcare now that I'm preparing to ship back my LaserTouchOne and save myself those $500. I've seen several "TMJ specialists" who were of no use -- they basically all recommend various dental appliances, and as I've mentioned, none of these do any good for me.

I can't see any money-back guarantee on the Grindcare site, so I suspect it's all or nothing. In the TMD game, there are rarely people who are willing to refund your money, in my experience.

I can't simply take a sleep study because my insurance doesn't cover it, and I don't want to drop however many thousand dollars to find out what I already know--that I clench my teeth all the time, including when I sleep. What am I to learn?

I've tried many muscle relaxants and all they do is make me tired. I don't notice any difference the next morning.

You must understand, this affects me 24/7, not just when I sleep. I'm clenched right now as I'm typing this and have to remind myself several times/minute to relax the jaw.

OMG I googled around to find the cost of Grindcare. $1000! Does insurance cover this typically?
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replied October 17th, 2011
Experienced User
Grindcare's EMG will give you an accurate diagnosis, of if you brux or if you don't. As far as it's diagnosis side (using EMG) I bet it makes no sense to give a money back guarantee - they have done the double blind studies to back up EMG being accurate for diagnosis. Some dentists use a different kind of EMG for diagnosis, but an all night sleep study makes the most sense to me, and Grindcare spits out a simple line chart in the AM of if you bruxed, and if so, how much.

You can do bruxism in you sleep hundreds of times a night, with all your force. Compare that to the 20 minutes of food chewing we do on average in the daytime, which is mostly just rolling food around without full clenching either.

So the CES feedback mode in Grindcare (optional) that interrupts you night time bruxing, is where I got the massive relief. People have been known to use it in the daytime, I've heard. But getting relief from night time bruxing made the difference between quality of life and none for me.

So, the 3 reasons I liked Grindcare are 1. because it diagnoses accurately, 2. because it gets you back to restorative sleep, and 3. because most people eventually stop using it, or use it only occasionally to make sure that they are no longer bruxing.

Since I am a chronic pain patient, I have to go back onto using the unit every once in a while, because when I am not able to manage my pain well, I start bruxing again.

So, I reccommend renting before buying. But even the cost of buying is much cheaper than most TMD treatments. The convenient gel pads (for conductivity) are expensive, too - the last batch I bought in England were $1.80 for 10 disposables you use to connect the lead, and probably cost more. Definitely a cost benefit decision. But at least you can get an accurate diagnosis of whether or not you are bruxing in your sleep, and how much, and how much you are reducing it, every AM. Assuming that you are living an otherwise healthy life, if bruxism is causing your problems, then stopping the TMD might help you as much as it helped me.

But since you don't have an ironclad diagnosis, I wouldn't guarantee anything at this point. All I would say is that you might want to consider finding out if you can rent a unit and know for sure what you are dealing with.

Good luck


You can rent instead of buy (I bought before approved and available in the USA)
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replied May 14th, 2012
They offer a money-back guarantee, but THEY WILL NOT HONOR IT. I have called them within the guarantee period and they've delayed getting back to me, not responding to my emails, and then saying "oh the guarantee period is now over" ... well of course it's over if you wait 3 weeks to get back to me and I called within the last week of the guarantee !
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replied May 16th, 2012
Experienced User
who did you buy your unit from, and in what country? Why were you unable to rent from a dentist, to get a dianosis before buying, or rule out TMD bruxism entirely, saving you from the expense of paying for something without getting an ironclad diagnosis, first? I had no trouble getting a response when I had a problem.

So what did you buy, and from who?
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replied March 19th, 2012
TMJ nightmare
I've been crying so hard reading this! I know how you feel and its so frustrating!! I've been living in pain for months now! I'm a house g/f and have a 14 y/o daughter and getting really sick of feeling alone in this! I feel like they just don't get it and I feel even worse because my house used be stay spotless, dinner on the the table by 6:30 all of that has gone out the window! now my life is spent laying on the couch crying with my heating pad watching NETFLIX! some people would prob love that but I personally hate my life now! I have an appointment Wed to get Botox in my jaw and praying it gives me some relief! I also have Tourette's Syndrome and my ticks happen to be in my face and neck and a little in my back so the idea of the relaxing my muscles is kind of a joke since I have zero control with my facial ticks! Ill be praying for you and hope you and I both can find some relief! Don't give up and let TMJ beat you!! lets keep our heads up and keep fighting this battle that seems too hard but I know it can be done! theirs no other way!
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replied March 20th, 2012
Botox is an unapproved and untested treatment for TMD bruxing, that helps temporarily at best, and eventually causes reduction in jaw bone density. I did plenty of Botoxing before I figured out how to get a provable diagnosis first, and then a non-invasive, effective treatment.

There is no excuse for Botox-ing bruxers. If you're going to start spending $$ trying on treatments for symptoms, without an ironclad diagnosis first, better to see if your doctor can prescribe nighttime muscle relaxants.

Since Botox will eventually cause more problems than help, and muscle relaxants only help temporarily (you develop tolerance), neither is a long term treatment for sleep Bruxism. I suggest you rule out TMD bruxism or get an ironclad diagnosis, by renting an ipod sized EMG machine, like Grindcare's from a dentist. EMG sleep studies are THE double blind proven diagnostic for TMD bruxism, and non-invasive.

Unfortunately, most of the treatments people pay for are WITHOUT getting an ironclad diagnosis first (EMG sleep studies are universally recognized as the most effective). Also, they are all at best contested - that means there is no evidence that they work. Changing your bite, using ortho devices that change your bite, the various symptomatic treatments, surgeries - none have had double blind studies prove their effectiveness. I tried them all, uselessly and blew all my money. The National Institute of Health says says to avoid these treatments (although they aren't up to date on Grindcare's EMG double blind studies, since most of their funders use contested treatments or are pain researchers). The NIH recommends you try non-invasive treatments first, so it's worth looking at their checklist. http://www.nidcr.nih.gov/oralhealth/topics /tmj/lessisbest.htm

For the first time, chronic bruxers can do ironclad diagnoses and effective, non-invasive treatment. So I reccommend you go this route, before wasting your time on all the contested treatments. Diagnosing by treatment was once necessary for chronic TMD bruxing, like it still is for anti-migraine meds, but not any more. Get diagnosed first. Before you start paying for treatments. The only treatments I think are worth paying for before you get a yes-or-no diagnosis with EMG sleep studies:
1. a custom mouthguard to protect teeth from chronic TMD brusing. Make sure it is not an invasive, bite changing orthotic. Just a basic biteguard, that protects your teeth and dental work, although this is no panacea, because it cannot protect your TMJoint.

2. A short course of night time muscle relaxants (same justification Botox pushers use, without the long term side effects). Make sure your doctor says muscle relaxants won't clash with any other conditions or meds you take. Remember that even if you feel great after a few nights, this is treatment without a diagnosis, and is only a temporary treatment, since you develop tolerance. Muscle relaxants and relaxation therapies are no substitute for renting a Grindcare unit to do effective, non-invasive diagnosis (and treatment if yes).
3. If your pain started after starting to take SSRI type anti-depressants, ask your doctor if chronic TMD bruxing could be a side effect of this type of anti-depressant. If yes, do not stop taking your anti-depressants because this is really dangerous to your health. Instead slowly taper down on the SSRI type to a cheaper, tricyclic like amitryptiline. Only do this if you have a doctor willing to carefully manage and monitor your transition.

Note that these are the few relatively safe ways to treat the symptoms of TMD bruxism, but are only temporary at best, and you can now skip them in favor of getting an ironclad diagnosis with EMG sleep studies.

Remember that no amount of structural oddities in films, CAT scans, MRI's, topos, deviation studies, etc. can diagnose whether or not you are bruxing chronically or will be helped by changing your structures. Your regular dentist can eventually just see the effects of one of the two kinds of chronic bruxism, teeth grinding, since you will eventually wear down enamel, but teeth clenching is not so easy to see.

You can now rule out chronic TMD bruxing (or diagnose and stop it) with EMG sleep studies, by renting an ipod sized unit from a dentist, and stop TMD bruxing non-invasively, and confirm it with contintuing EMG studies. Don't spend $$ on contested or invasive treatments now that there are effective diagnosics and treatments you can try first.
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replied April 22nd, 2012
TMJ
Here in the UK I had an operation, it only took me 2 years to have it diagnosed, Iwas at the same point as you. After 1 atempt at suicide I finally confronted my doctor and said you have to do something about this. I had read it was untreatable and it scared the s..t out of me as it affected nearly everything I did, right shoulder pain, yawning, excruiating pain down the side of my face and behind my eyes, even my breathing to the point I nearly passed out behind the wheel - I had already passed out prior and hit my head while wrestling for breath probs brought on by panic. I now have a discreet scar by my ear, I swear the moment I opened my eyes ~I was out of pain regardless of stiches etc, the nurse strongly recommended morphine but I did need it. Get yourself cut open and fixed. Also this problem is exacerbated by stress, you may not notice that you clench your jaw when concentrating, that's how mine occurred, running a business not realising i had my jaw fixed while concentrating. Good Luck
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replied April 24th, 2012
It's always good to hear of someone getting relief.

But no one should get TMJD bruxism treatments anymore, without FIRST getting an ironclad diagnosis, using non-invasive EMG sleep studies, let alone surgeries. You should only pay for what you need, and only pay for what will work. You can rent an ipod sized EMG unit from a dentist, to do effective EMG diagnosic sleep studies. If diagnosed, you can also effectively stop it, non-invasively, with a combination of CES and EMG (monitoring the effectiveness of your biofeedback treatment).

Until recently, you could not diagnose TMJoint area pain caused by chronic TMD bruxism, effectively with EMG sleep studies. And all invasive treatments are contested. So no one should have to try on expensive treatments in desperation anymore, like I did.

I got expensive arthroscopic flush surgeries and injections, which only temporarily interrupted my TMD bruxism. Then the pain and damage inevitably started up again. The other kind of surgery, titanium replacement of either the TMJoint ball, socket, or both, usually does not relieve pain (the Mayo Clinic is honest in their website, which you can check out).

TMD bruxism is a chronic neuromuscular disorder that can cause eventual teeth and TMJoint area pain and damage. EMG sleep studies are the only effective diagnostic for TMD bruxing, so I recommend people get a diagnosis, before they start trying on treatments, which usually get expensive and don't work. Rent an EMG unit from a dentist

Stress reduction usually doesn't cure something that has become a chronic neuromuscular disorder. Nor TMJ surgeries, nor cosmetic dentistry, nor bite changing dentistry, either. Botox causes long term jaw bone density reduction and other problems, is not approved, nor tested for TMD bruxism, and you should never use it (of course I tried it before there were effective diagnostics and non-invasive treatments to stop TMD bruxism). SSRI's can cause TMD bruxism as a side effect (yep, my doctors were bamboozled by SSRI salesmen to force patients to use SSRI's before pain meds, and I reacted with worse bruxing and pain).

Progressive orthotics are also contested treatments, along with prolotherapies, NTI devices, etc. Before there were EMG sleep studies, I tried everything, and got temporary relief at best. The National Institute of health lists what's contested, and has a few tips to try. Check out the NIH webpage at http://www.nidcr.nih.gov/oralhealth/topics /tmj/lessisbest.htm

Unfortunately, effective EMG diagnostics and non-invasive treatments became available AFTER the explosion in TMJD ads and testimonials on the web. So there are a lot of expensive, contested, invasive, and outdated treatments on the web. Get EMG sleep studies (rent, don't buy) first. Why would you buy a treatment without getting a diagnosis first any more?

If you still have facial and/or jaw pain after EMG sleep studies prove you have no TMD bruxism, find a headache specialiast to help you rule out or diagnose migraine or other pain syndromes.

Half of adult back x-rays show slipped or burst discs, or stenosis or pinched nerves or other abnormalities that would justify back surgery, except for one thing: 1/2 of the people with such ugly x-rays, scans, topos, etc., have never had any back pain or loss of function. Blown discs, for example, often heal into a kind of natural lamination. Similarly, dentists have been doing cat scans and 350 degree scans and x-rays without considering your lifetime radiological exposure, nor considering that a very ugly anatomical TMJoint might never give any pain nor loss of function. Never let a dentist convince you that your film means that you have chronic TMJD bruxing and need reconstructive dental or TMJoint surgery. Instead, get an EMG sleep study before doing all kinds of unnecessary x-rays, or making assumptions without the gold standard of EMG sleep studies.
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replied April 30th, 2012
Never give up
Never give up, I have a story a lot like yours. I'm 23, I lived in Arizona until i was 9, i turned 10 when i moved to Missouri. My teeth are in a horrible condition, sometimes i breakdown when i look in the mirror at them. I've been bullied since i can remember, even in college now. I have tinittus, hyperacutis and i'm going into testing for TMJ and APD. It sucks, on some days it feels as if i've been hit or punched in the face. My jaw clicks, pops, crunches etc. My hearing is messing up and i have to wear glasses, photophobia, migraines, and other vision issues.

I just started googling about all of this and it is depressing to find out about it. My parents are to helpful either, they say things like "I knew there was something wrong", "hope you don't go deaf" etc. I know they mean well but it's just more shards. But, i'm not going to stop, i've lived with this for many years never knowing what it was, i may not be able to do what i wanted "violinist", but that doesn't mean i cannot adjust be determined.

So, the question is, since your life has been handed some interesting cards to play, what are you going to do? Personally, playing the game and beating everyone at it is something that's worth while. Your life isn't over, it's just had the reset button pushed.
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replied May 2nd, 2012
Experienced User
wow. only 23 and you have the attitude of a champ already. That's why you will eventually beat this, because you aren't giving up.

I hope that you can rule out TMD bruxism with non-invasive sleep studies. EMG is the only diagnostic recognized as effective, so beware of anyone who says that they can diagnose or stop TMJD bruxism any other way. EMG is not as profitable as the other treatments around, all of which are contested by the National Institute of Health (link is in my previous post)

Hope you can find a dentist who is renting out an ipod sized EMG unit, so you can get an ironclad diagnosis before spending money. Google "gindcare usa" for an example. Until you can get EMG sleep studies, know that chronic TMD bruxism won't be cured by anything you stick in your mouth (although a thin, strong, slightly flexible, custom mouthguard made for you by a dentist will protect your teeth a bit and maybe give a little relief).

If EMG sleep studies give you a NEGATIVE diagnosis for TMD bruxism, you might want to check in with a headache specialist to make sure that you do not have hereditary migraine. Some of the anti-migraine drugs, like approved and inexpensive amitryptilne, might reduce some of your symptoms. Beware of taking any SSRI drugs as a migraine preventative, if there is any chance you are a bruxer, since SSRI's occasionally exacebate bruxism.

If you are satisfied that you have ruled out the possibiliy of TMD bruxism or migraines, the last thing I can think of to check is to make sure with an ENT and allergist that you are not suffering from infections nor allergies.

I can tell you only that I am glad that you are young. I remember the decades when I was called a malingerer (whiner) or crazy person. Now my doctors ask for a demo of my little EMG machine, and write down the info in case anyone they love ever gets chronic TMJD bruxism. It's no fun to be in your shoes, but you will beat this a lot quicker than I did. Here's hoping that your days of chronic distress are almost over!
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replied May 2nd, 2012
hang in there... u havent even tried being treated...
im 23 I had braces for a number of years, was told to wear retainers, but i did not and now my teeth have shifted back and now I'm also suffering from TMJD, headaches, jaw pain, face being deformed, pain back of head, shoulder/back/jaw pain, jaw clicks, me face is changing, throat pain...

i have been advised not to go with neuromuscular dentistry as it is very epensive... guys what is emg sleep study, what is it called in uk? is it neurology? i have been told splint is the what works for most, may or may not be followed by orthodonthics. what kind of splint do you guys suggest?
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replied May 4th, 2012
Experienced User
All the bite changing splints and orthodontics and specialized dentistry are in the National Institutes of Health list, of treatments that have NOT been proven to help chronic TMD bruxism, a common cause of what people call TMJ or TMJD. Here is the link: http://www.nidcr.nih.gov/oralhealth/topics /tmj/lessisbest.htm

If you have TMJD or TMD caused by chronic bruxism, EMG sleep studies are the only accurate and non-invasive diagnostic tool - all the rest are unproven and contested. My last post tells you how to find a dentist to rent an ipod sized unit.

You should not be paying big bucks, trying on treatments, before getting an accurate yes-or-no diagnosis first. There are still SOME chronic conditions where you have to start trying on various preventative treatments, without having an air-tight diagnosis first, like migraine preventatives. TMD bruxism was once as difficult to diagnose and treat as migraine, but not any more.

Miniturization and convenient packaging of EMG with software, is only recently globally available. So, unfortunately the internet is just starting to fill up with websites and posters, advising you to try outdated and contested treatments for TMD bruxism, when you should not. We finally have effective, uncontested, double blind proven diagnostic and treatment tools.

Trying on treatments in the hopes that one might give you relief, then just assuming your diagnosis is not just incredibly expensive, but may cause long term problems (botox reduces jaw bone density, splints and appliances can leverage more pressure upon TMJoints, excessive cumulative x-rays, etc.).

Trying on treatments, instead of first diagnosing, also causes a special problem, just for TMD bruxers. It's a problem that can be very misleading and expensive. TMD bruxism (a chronic, subconsious, neuromuscular condition unafftected by stress reduction, etc.) CAN be TEMPORARILY interrupted. One example, if you have TMD bruxism, you may find temporary relief from muscle relaxants or painkillers before bedtime, but then you develop tolerance. Other examples: inserting foreign objects into your mouth (see NIH on contested treatments), or using Botox, to temporarily interrupt chronic TMD bruxism.

It was pretty frustrating, not to mention expensive, in the bad old days when I had to try out every treatment, only to relapse, or hear that I was a hopeless case. I made a point of going back to some of those doctors and dentists, who had given up, and showing them the simple, intuituve line charts of my EMG studies. They could instantly see that I had been silently clenching my teeth hundreds of times a night, and how I had stopped it. I had still blown years of pain (and all my money), but at least I know that those doctors will never skip EMG sleep studies now that they are feasible.

So, to recap, use non-invasive EMG sleep studies to diagnose or rule out TMD bruxism. If you get a positive diagnosis, use it to know if a treatment is working, or is not working. If you need to stop TMD bruxism, with biofeedback that restores proper sleep patterns, you now can.

It won't make orthodontists as rich, but even ENT doctors dumped TMD bruxers onto dentists and orthodontists, when there were no good diagnostic/treatment tools. So you really can't blame dentists for trying everything under the sun to help patients in pain. But there are now noninvasive EMG diagnostics and treatments, supported by double blind studies.
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replied May 20th, 2012
One of the many tmj sufferes and relieve to read this
I cannot explain the relief these long list of messages has given me. To be frank, I have been freaked out for the past week, by not going to work thinking that I m suffering from some weird eye problems and issues. I went to the local eye clinic and eye centre, took extensive checks and was told that there is no issues with my eye. Now I know it is my tmj issues tht are causes my eye problems.

It all started about a week ago and it lasted for a while ( still on going) but am relieved after knowing it is not a disease and also getting guidance from the private dental clinic here. I am still learning to cope with it and must admit I hate the feeling of weird vision but u know what... I am gonna press on and try. After all I cannot run away and hide and hope it goes away , trust me I wish it would.

It is hard as hell to explain tmj issues as people think u r imagining things or spinninga tale. Do reach out to me and keep in touch on methods that has given you relief and comfort.

Shree
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replied May 20th, 2012
Experienced User
Don't try on treatments without EMG diagnosis, first
Thank goodness that your suffering started only recently. It takes a long, long time before TMD bruxism can cause central sensitization (pain loop no longer cured by fixing the original problem), and you have not even been diagnosed with chronic, TMD bruxism. Go non-invasive for diagnosis and treatment with home sleep studies using an ipod sized unit. Rent, to diagnose before you treat, since it will also rule out TMD bruxism, if you don't have it, saving your life savings and telling what NOT to worry about. Lastly, don't assume your quality of life is over. Even mine improved drastically.

It took decades for chronic pain and TMD bruxism to wreck my life, and I still got drastic improvement, once I used EMG sleep studies and non-invasive treatment for TMD bruxism. And I had severe pain levels from muliple problems:

Over decades, I had 2 jaw dislocations in sports and auto accidents, that were so severe that doctors could not believe my jaw didn't break. I got all kinds of surgeries that, like the National Institute of Heatlh says, have not been proven to reduce pain, nor stop bruxism, surgeries that only made local inflammation and pain worse. I also broke 3 neck vertebrae in an accident, and my spinal cord was kinked and folded over on itself. Talk about pain. My undiagnosed, untreated broken neck meant I lost all use of my arms, and suffered permanent partial paralysis and constant pain (while doctors refused to give me a neck x-ray or nerve conductivity test for 3 1/2 years since I was a software engineer, so all my problems must be due to carpal tunnel!!!?!).

When they rushed me into surgery after the neck x-ray, they gave up on a bone graft after almost 4 hours of surgery, and now I live with the added chronic pain of more than eight hours of surgery and its effects going through the front to insert titanium to laminate, also, with discs blowing out above and below and more nerve damage). Since my doctors, for some reason, did not have relevant records on hand anymore, I was denied SS, and denied again, after the Federal Office told the same judge that he really should reconsider my case (of course the same judge decided he couldn't have made an error - quel surpise). Oh, and when I told the surgeons that the laminating of 3 vertebrae hadn't helped my pain at all, they told me that I needed to wait a couple of years to allow the nerves to calm down (conveniently getting them past the statute of limitations).

I was called a malingerer, or depressed, or psychosomatic (I have a copy of a doctor writing that I need a psychiatrist for my complaints). I was told by the best pain centers in the country that without a clearer diagnosis, they couldn't take me on as a patient. I was prescribed SSRI anti-depressants for pain, since doctors don't like prescribing pain medications, and one of the side effect of SSRI's can be increased bruxism, which is exactly what happened to me.

I suffered brain damage from veins popping in my head after non-migraine headaches, from meningis inflammation where there's no room between the brain and skull for such swelling. All the pain of memingitis, without the virus. And none of the the relief of recovery (or death). It takes many, many years of completely untreated and very, very severe pain for any chance of something like this. So it is very important that you do NOT read nightmare stories like mine and assume that you are already there, ok?

I was told after I proved I don't have migraines that I must be getting migraines, and would have to repeat the preventative drug trials (these can last a year if you are proving none work). I was even told I have MS due to the brain damage, until a neurologist experienced with MS brain damage said that the pattern was too diffused to indicate MS.

I was in agony for many, many years during all these mis-diagnoses and mis-treatments and just plain mistreatment. But none of it was as bad as bad as the pain caused by the TMD bruxism that I established during these years.

People with severe, untreated pain for so many years as me often don't get better, even if you fix the origninal source of the pain (it's called central sensitization). But you don't have to worry about this ANYTIME soon.

My TMJoints are the ugliest possible, but once I stopped the TMD bruxing, I could eat, and I no longer dislocate to the point where I need a doctor to get my mouth closed. Now I just have dentists insert a child size bite block to prevent any damage during dental procedures.

I can't sing in a rock band anymore, but I don't want to be Mick Jagger anyways. I have visible inflammation (from bogus pain signals from damaged nerves) that have been blocking a salivery gland for years. Again, my point to you is that it takes a long, long time to get this bad, and even then you can get better like me.

During all those years of agony, I kept regularly googling for new developments in TMJD realated pain, and headache. I made every mistake, trying on treatments, when I didn't have an ironclad EMG diagnosis. This is the real problem with TMD bruxism - you CAN and SHOULD get a diagnosis before treating, now. Films, deviation studies, etc. are contested diagnostics for TMD bruxism. I botoxed (causes bad jaw bone density increase later) with the best. I tried everything you now see hawked if you search on TMJ or TMJD or TMD. Despite recent proof that you should diagnose before trying on treatments, the internet is flooded with contested treatments.

So, even after years and years of increasing damage, I have a life again. With the worst TMjoints you could film, and lots of nerve damage, chronic pain, etc. We don't know what percentage of TMJD problems are due to TMD bruxism yet, but I suspect that it's a lot, and we'll know in a few years.

The one thing I do know for sure is that it takes a long time to do the kind of damage with TMD bruxism that ruins your life. No matter what kicked it off. And there are now non-invasive diagnostic tools (rent an ipod sized EMG unit for sleep studies at home). And non-invasive treatments to stop TMD bruxism, that will restore, not interrupt, restorative sleep patterns.

Your life is not over, which untreated TMD bruxism could once eventually mean. I have been told I can have unlimited opiates so many times over the decades, in other words, written off as too damaged to fix. But within one minute of reading the little line charts that home sleep studies print out, every one of my doctors demanded a demonstration, bought a unit, or wrote down the name of the best one. Because they could see that TMD bruxism is no longer a slow slide into disability.

I clenched with all my might, hundreds of times a night, for many, many years. The sum total of clenching and grinding for a day's eating might be 22 minutes, for contrast. Most of our eating is as much rolling the food around as it is anything like clenching/biting. So, you can imagine the wear and tear damage severe, chronic, TMD bruxism caused me, after enough years. But as soon as I diagnosed and stopped it, my quality of life came back.

So don't assume your life is over, if you have hurt a joint, or disc, or teeth, or TMJoint related areas. Earaches are the most common first effect of TMD bruxism, and even they can be debilitating.

As the NIH says, the pain and disfunction from many of these injuries will resolve with healing. For another example, 1/2 of adults have back x-rays that would justify surgery, but only a quarter of adults have ever had back pain problems, and the vast majority heal fine (a blown disc that does not strangle a nerve can heal to be a kind of lamination, naturally, no surgery needed, for example).

So if a dentist tells you that he can see that you are a bruxer, and wants to make you the least expensive, slightly flexible splint to protect your teeth and dental work, fine.

But if any dentist starts selling you treatments for TMJD bruxism, before using home sleep studies with EMG, you might want to ask them if they know about the new, non-invasive diagnostic and treatments.

Do not assume that your pain and disfunction will stay, let alone worsen. And do not start trying on treatments to stop bruxing, let alone expensive ones, without using EMG sleep studies at home, first. Diagnose effectively, before you treat. Or rule out TMD bruxism, so you don't waste years and $$. All the current treatments are contested, except EMG with biofeedback, which is slowly accumulating enough double blind studies to eventually become the best known, not just the best. Use EMG sleep studies at home, to diagnose or rule out bruxism. Rent from a dentist to avoid buying something until you have an accurate diagnosis.

Try the tips in the NIH website, which may help you heal on your own. It can take a long, long time for an injury, whether dental or otherwise, to change over to chronic TMD bruxism, with related TMJ pain. Don't assume your quality of life is gone forever. If even I got better, you might just one day become superhuman!
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replied January 19th, 2013
I also 23y old guy and lost everything because of this stupid TMJ. My girlfriend gave me up and got married another man 6 months ago, because she can't stand with my abnormal life anymore. I quite my job because I can't handle the pain and the stress.

I am also the super stress person since I pass mmy 15y birthday, my life was completely changed since then.

I try to read, listen and watch everything I can find ( internet, books, tv, radio , songs... ) because those at least teach me that life is like this, always have happy time, sad time, healthy time, pain time but When we don't give up ourselves we will still have way to go.

Yes I do jealous to those who never experience with TMJ, but I don't know what they are facing with. Maybe some of them ate facing cancer or something else that is more terrible than us... So life is unfair, we don't need to compare our life to others because everyone has life to live.

Now my TMJ pain is getting worse and worse and I try every way to find someone to help in hope It can be cured someday, but guess what, there is no expert in my county ( my country is a developing country), so I have to fly to other countries for help while I don't even have a job. This is really difficult and hopeless for me while I don't even have money or supporters at the same time I need those to give myself a chance to live. All I have now is only a hope.

Long in short, I just want to share what I am facing, exactly similar to you and we can share and find the way out together. I think we can talk or chat sometimes.

Email me or skype me if you want to ( I also need someone who understand me to talk to because my life really mess up now, all my family members said that because I think too much, all the doctors I went to said that I think too much, all of my friends said that I maybe crazy ... )

Take care and keep hoping
Bruce
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