tmj - botox for TMj, TMD, bruxism, or jaw clenching is not enough - need to stop the activity

I am like you in one sense: I think I will be using Grindcare all my life.  I grind my teeth as a response to chronic pain.  I can stop using Grindcare, but eventually I start clenching again enough to inflame the meninges - all the pain (including some brain damage) of meningitis without the high from the fever or the virus to blame it all on.  However, I think that new versions of Grindcare will become easier to use and hopefully they will be able to make the EMG leads idiot proof...when I am using sleeping pills, I can yank the cord harder than a toddler yanking an electric cord from an outlet, eventually wrecking it.

Since Grindcare is a real EMG machine (biofeedback mode is optional), it will tell you definitively if you are a bruxer, and how severely.  That means it would be much better if they could sell this FDA approved device to dentists here to rent it out...right now the patent trolls are putting people who need to know that bruxism ISN'T their problem through the slog of getting a unit, learning how to use it with no doctor support.  But it is the first thing I have seen that really does the diagnosis accurately, and has effective treatment.

Apart from getting it sold directly to USA customers, I also wish that doctors would STOP telling people that botox is a rational response to TMD (chronic bruxism).  Botox works only temporarily, like muscule relaxants, with indefinitely long side effects that get in the way of effective treatment like Grindcare provides.  And Botox migrates, inluding to your brain, not just to sensory nerves, which can make Grindcar's biofeedback difficult to sense.  Really is criminal to lead people on into paying out of pocket for Botox that won''t cure you, and can make curing you much much more difficult down the road.  I have to go through contortions to use Grindcare after so much Botox, and they think I am nuts when I say it doesn't zap me emough to hardly notice - then I attached it to an arm muscle (and some friends') and realized that although Grindcare has literally given me back a life, it would be 10 times easier if I hadn't Botoxed.

Good luck

I am amazed (and happy for you) that you can get gel pads to work more than once.  I have extremely dry skin, so I assumed that I would be able to use the gel pads the next night.  They kinda stick on okay the next night, since my skin doesn't exactly grease up the band-aid like stickiness.  But I have had no luck at all getting a good connection...in fact, I have had to waste a gel pad a couple of times because I put it on without moistening the gel pads with water first.  Most people can just slap the gel pad over their temple and be done with it, and it's only a small suggestion in the 'problems' part of the documentation that one try moistening the gel dots before application.  The assumption is that it might help if your gel pads are getting old and a bit dried out, I think.

But for me, since Botox hugely reduces your local sensory nerve action, not just motor nerve action, I have to do it to every night.  Even then, I only get the barest of tingles.  If I stick a gel pad on my arm, for example, without moistening it at all, and tuned to a low level like 4 or 5, I get a really noticeable jolt sensation, so the inventors have done a pretty good job at making the Grindcare biofeedback mode tunable to a wide range.  It's just that people who have been suckered into thinking Botox might be worthwhile, like me, find it hard to use the greatly reduced muscles and nerves at sites of Botoxing.  Maybe there are people who can regrow more nerves and muscles than me, but Botox has simply acted as planned, and caused a lot of atrophy and nerve death at the sites of injection.

If your biofeedback mode is not working as well as it used to work, one thing to think about is the gel pad and specifically the connection of its lead wire to the pad.  I noticed that Grindcare sells not only replacement gel pads, but also replacement pads.  The reason for this is that by pulling on the wire (during sleep or when pulling the pad off in the morning), you are risking loosening the connection.  An analogy is when you pull a lamp or vacumn cleaner cord from the wall outlet by the cord, instead of the plug end.  Eventually, the cord loosens from the plug end, and you don't get a good connection anymore. 

I have loosened the connection on mine by pulling at mine during sleep (maybe just from tossing and turning), and so I bought a couple of replacement pads.  One died over the course of a few nights, sometimes working, sometimes not, then not at all.  I could see that the pad was actually separating into two layers, sandwiched around the wire.  And not in a way that I could figure out how to go in there and reconnect it, like I have done for lamps and other electrical appliances.  My second pad eventually got a tiny bit stiff after a year of use over my very emaciated and curved temple, and I had difficulty getting a good connection when placing the pad over my temple.  So, even though I hadn't yanked on the wire to the pad, I got greatly improved conductivity by switching to my spare gel pad.

I don't remember well, but I think that the biofeedback mode and the monitoring mode were both affected by the bad connection - that it was easy to see that I didn't have a good connection.  But my memory is hazy, since I am always putting the thing on last thing at night after taking a sleeping pill!

Again, I am amazed that you have managed to use gel pads more than once and am happy for you since they are so expensive.  I thought I was the only person in the world for whom this would be a concern, since the expected treatment(retraining by biofeedback) is temporary, like a few months. 

Because my chronic pain inevitably gets me clenching my teeth again after a few days or weeks without biofeedback, I keep using Grindcare off and on indefinitely.  I assume that you have some similar reason for so chronically bruxing that you need to use Grindcare long term, and am sorry to hear about it.  As for naturally becoming desensitized to biofeedback mode over time, I can imagine that a healthy temporalis muscle that is well ennervated might indeed get a little used to the sensation over time, and you might ignore the tingle of, for example, level 4 biofeedback after long acclimatization.  But Grindcare has built in this tedious nightly biofeedback set-up, to make sure you calibrate the biofeedback to your liking every single night.  The only reasoning I can imagine for this step, that takes a minute or two when one least wants to take the time, must be so people able can make it as strong as they wish.  (That is, I mean people who haven't made my mistake of Botoxing their temples). 

Which reminds me once again of how I can't believe that our government isn't warning people more, both doctors and potential patients, against using Botox off label for bruxism.  There must be some powerful business interests who don't want any flap about any of the (too) many off label uses of Botox. 

I believe Botox is a life saver for those patients so horribly afflicted with conditions that involuntarily shut their eyelids, or involuntarily spasm other muscles (like in MS sometimes).  So I am glad that the FDA approved Botox where its use outweighs the side effects.  But off label use of Botox has created nightmare conditions from side effects for not just bruxers, but people who have had it migrate to cause vision problems, etc.  I am not the only tragedy that could have been prevented!

I will try your tip about removing one of the gel pads, so thank you very much.  I hope that you figure out your problem and would love to hear that you have resolved it.

sorry, been moving.  You can set sensitivity of Grindcare between 1 and 99.  If you have the electrode too sensitive you'll get crazy amounts of grinding.  (Do this in the config menu).

I was grinding (clenching, in my case) hundreds of times a night, and am now down to 10 - 20 times a night.  So, yeah, big difference for me.  The lower the number, the less hard a bite before you receive biofeedback.

Also, when you set your baseline each night, make sure you are clenching hard during the clench time, that all 3 electrodes are in contact with your skin.

Too bad you don't have the USB and grindcare software - it uploads last night's info automatically and does the line charts.  But you should be able to do it using hte Grinddock and Excel.

Dear dental hygenist: your info is out of date, although I agree with you that a soft mouthguard is going to do some shock absorbing and might be the lesser of some of the evil splints I have used...I have tried the NTI device, and many others, including steel mesh reinforced hard, etc.  Bruxism is not necessarily psychosomatic.  Botox will NOT help and will cause permanent problems when you eventually recruit non-Botoxed muscles to brux with.  If you are going to use a treatment to try and diagnose, you should never use Botox - use muscle relaxants for a few nights, and understand that they will stop helping soon, so just use diagnostically (EMG like Grindcare is much better because it is black and white diagnosis). Only EMG will tell you if you are grinding and how much.  Grindcare's combo of EMG reading with adjustable stimulation to interrupt bruxism is the only thing that has worked for me (and you can read the studies since it is selling and renting like hotcakes everywhere but here, where a company with a patent for a headband is holding up sales in the USA, even though it is FDA approved.

Formvital, I'll try to check this sooner next time.

glad to hear that you survived!  Nothing took me longer than recovering from head traumas!  Although most of the improvement is in the first year(s), it is amazing how much I was still improving bit by bit, even 7 years later.  I noticed the same thing with my dad after he had a stroke.  Anyhow, hang in there for the long haul and it will be worth the efffort.  Believe me, when all the doctors told me I should just take as many pain killers as I want and try to relax, it made me feel like giving up (2003-2009).  Glad I didn't!

There is another forum you might be interested in checking out, called braintalk (google it).  It was started by the guy who started 2nd city, back when he was working at Massachusetts General.  There are people on that forum who know SO much more than me it's insane.  I think they specialize in brain diseases and injuries, or at least focus on the head?  It's a really good place to find people who are dealing with the same problems as you.

Thanks for the compliment, but there are people who are a lot less wordy than me, and know a lot more than me.  Good luck and don't ever give up!

sorry to hear that you are dealing with chronic pain from bruxing.  Grindcare was the only thing that worked for me, and I tried EVERYTHING.  Very very unfortunate that you let someone botox your masseters (I hope they didn't botox your temporalis as well?).  Works at best temporarily, has bad long term effects that have kept the FDA from approving this usage, and complicates future diagnosis and treatment with the gold standard, EMG and makes the closest thing I know of to a cure, bruxism interruption, much more difficult.

A better way imho is to diagnose with something less damaging than Botox, like a few nights of muscle relaxants.  The best way to diagnose is with EMG.  I think you should really read the wikipedia entry on bruxism, even though I am sad to see that they are no longer including Grindcare by name in the list of 3 diagnostic tools.  Grindcare is incredibly expensive, but I have tried most of the others and imho you can get the surest diagnosis with Grindcare, with the key bonus of the only effective treatment I have found for chronic bruxism.  The sleep study EMG's are usually a cruel ineffective joke, where a tech slaps at best a single electrode in the general direction of your temple and often getting false negatives if someone botoxed you.

If you do use a sleep study to try to diagnose bruxism, make sure that your sleep study is covered by your insurance.  Then learn where the temporalis muscle is by placing the pad of your index finger over your temple, clenching, and learning to feel where the temporalis muscle is that has clenched along with your masseters.  Next, make sure that the sleep study tech places the lead over your temporalis, not someplace else.  For those who have been snookered into getting their temporalis muscle botoxed, you need to find the remnants, or muscles under the hairline that have taken over the job of the atrophied temporalis, and hope it's enough for the sleep study EMG machine to track.  People who have been botoxed before sleep studies that also monitor for bruxism often get false negatives for bruxism, I think.

Bite guards are great for protecting your expensive dental work from getting bruxed to bits.  They only worsen, unfortunately, the effects by bruxism on the TMjoint (simple lever).  This could be why you have more joint inflammation and pain after getting a bite guard.  They do work well to protect your dental work, so I am not recommending that you stop using it, even if you were sold it as though it would cure some undiagnosed malocclusion, that was supposedly causing your bruxism, and supposedly will stop it.  Malocculsion is one of the rarer causes of chronic bruxism, imho.  Moreover, whatever sets off bruxism, once it becomes chronic, you could even cure the original trigger, but that won't stop the chronic bruxism!  Because it is now neurmuscular and chronic!  So chronic bruxism needs to be addressed before it causes too much pain and damage.  If your bite guard is thin and has a little give, it probably isn't adding much to the damage that chronic bruxism can cause to the TMjoint eventually, and it could protect your dental work while you look for a way to stop the chronic bruxing.

I agree completely with wikipedia that chronic bruxing has usually become subconscious and habitual, a neuromuscular or sleep disorder that will not get cured by making assumptions that you have misaligned teeth (malocculsion) or are responding to anxiety that you can stop by psych, willpower, stress reduction, etc.  If you can try stress reduction without spending $$ that's a good idea, because it will work if your bruxism is not yet chronic.  Otherwise, the only thing I trust is Grindcare.  Although FDA approved, Grindcare is being sued by USA patent holders who want a piece of Grindcare's exploding business (exploding everywhere but here in the litigious patent world, which is completely degenerated from it's original goal of protecting innovators while insuring that others can eventually use their innovation for more innovation).

On the subject of your headaches:  I would not assume yet that your headaches are a direct result of bruxism, although they sometimes are.  But many people with, for example, hereditary migraine, hope against hope that bruxism is their real problem, when it might not be at all.  The kind of migraine-or-worse headaches I get from bruxing are not only from bruxing - I have damaged nerves from the broken neck that are doing reverse conduction, which means spreading a lot of inflammation due to damaged nerves sending false 'ouch' messages all the time.  I still don't get the whole brain lining inflammation and trigeminal nerve strangling by inflammation unless both my bruxism and reverse conduction are completely out of control.  By stopping the bruxism with Grindcare's biofeedback mode, I have a real life again sometimes, after having been bed ridden and literally dying for years, on massive druges to keep me semi out of pain.  Grindcare let me stop having to drug myself to semi-consciousness. 

But I have to doubt that many people have enough disparate sources of inflammation to cause my kinds of headaches.  You really want to get effective EMG (you can chart Grindcare over many nights for a crystal clear diagnosis) to see if chronic bruxism is even your main problem.  And you want to stop letting people who sell treatments make assumptions about your diagnosis so they can sell you the treatment that they happen to know about.  A good diagnosis can save you years of dead ends or pain or $$.  Tracking your daytime headaches over many weeks, and seeing if there is a direct correlation with how much bruxing you did the night before is possible with Grindcare.  If Grindcare's biofeedback mode stops the headaches, then you know that your correlation is actually causation.  But this is something that you need to track accurately over weeks or months, which Grindcare lets you do easily with a USB connection to simple line graphs, from a device the size of an ipod nano, with an EMG lead instead of earplugs.

Did the Botox make a difference temporarily?  Which muscles did you get botoxed? I got too much (3 full vials one year, both to masseters and to temporalis muscles).  Taking a few nights of muscle relaxants seems to me the safest treatment-as-diagnostic-tool, not Botox.  Since you quickly develop a tolerance to muscle relaxants (and don't want the systemic effect), they are best just for diagnosis, and not as good as EMG you can do for many nights (like Grindcare).  The problem with Botox is that it might give you some relief from the effects of subconscious bruxing, so it can work as another treament-as-diagnosis tool, but it will also be only temporary for chronic bruxism, with some long term, permanent, and unknown effects that make it not worthwhile (hence no FDA approval for bruxism).  An additional reason that Botox should not be used to diagnose or treat chronic bruxism is that the muscle atrophy (and reduced sensation) it causes, complicates EMG diagnosis and treatments like Grindcare's biofeedback.

Everybody bruxes during various phases of our lifes, in childhood, during hormonal changes, during some kinds of stress.  This is not anything you need to diagnose or treat.   It is important to diagnose it, however, if the bruxing becomes chronic and damaging to teeth, TMjoint, and nerves.  EMG is the only sure way I know to get a good diagnosis, and should be on many successive nights (and you would not believe the other diagnostic tools out there that I have tried, including jaw arc analysis, other esoteric efforts by dentists and pain doctors, and the usual guards, nti devices, etc.). 

As for stopping chronic bruxism, I don't know of anything that works while enhancing your restorative sleep except Grindcare.  I kind of liked the dentist who patented a mouthguard containing ampules of hot pepper liquid, that you would burst when bruxing, and would hopefully stop you - the guy was really trying, although I don't see how being woken up by 5 alarm chili heat could be any better for your sleep than an increasingly loud audible warning tone (the headband) would be for your sleep or marital partner. 

So, if I were you and still experiencing what you think might be pain from chronic bruxism, I would try a short course of muscle relaxants before bed, and keep a diary of how you feel the next days.  And I would like to know how many vials of Botox you got, what patterns of injections, in how many sessions, and to what muscle groups.  Also, don't automatically assume that chronic bruxism is causing your headaches.  You could investigate them in tandem, although a clear diagnosis of whether or not you have chronic bruxism will make the investigation easier.

I hope that you are not taking any SSRI anti-depressants, even if a doctor has recommended it for pain relief.  Since SSRI's can cause bruxing, which can eventually become chronic and do damage to teeth, TMjoints, and cause chronic pain, you should get off any SSRI's, slowly ramping down your dosage.  You should never stop taking SSRI's immediately, because that can have bad effects on your health.  Reducing your dosage by 5 or 10 milligrams every week or few weeks is something that you can decide only with the help of your doctor.  If you need to take an antidepressant, your doctor can switch you over to an older tri-cyclic antidepressant like amitryptiline.

If your temporalis muscles were not botoxed, you can easily use Grindcare to monitor if you are bruxing.  You can also use its 'biofeedback' mode to interrupt your bruxing, so that your sleep becomes more restorative and you stop doing the damage from forceful chronic clenching or grinding. 

In my case, I got significantly more Botox than you, and unfortunately, got my temporalis muscles botoxed.  Because of the atrophy the deadened nerves caused, it is more difficult for me to use Grindcare.  I have bits of the temporalis muscle still working that are at and under my hairline, so I have to shave a little from my temples at night in order to get good connectivity.  Botox also reduces my sensory muscles (although Allergan denies this), and I have deadened sensory nerves from the decades of bruxing that finally became chronic.  So, the biofeedback mode of Grindcare feels way too gentle to be able to stop me from bruxing sometimes.  If I use biofeedback mode to stimulate other people or undamaged muscles/nerves in my arm, I am impressed that so tiny a unit and battery can send out such a noticeable tingle.  But I find it difficult to get it to work on my damaged temporalis area.  However, I use all the tricks like moistening the gell dots with a drop of water, making sure that my skin is absolutely clean and smooth, etc., and it has literally saved my life, because I can get it to work most nights.  In fact, Grindcare expects you to use it only for a few months and then occasionally monitor yourself, and I have found that I can skip using biofeedback mode if I am physically tired.

Buying Grindcare in the USA is not easy yet, although it has been long approved by the FDA.  It is also expensive, since you cannot just rent it from a dentist like people do in Europe and many other countries.  See a few earlier posts where someone said he had found a distributor.  If you do decide to buy Grindcare, because you cannot find anything else that works and is covered by insurance, I recommend buying an extra lead, since you can loosen the connection by yanking on it in your sleep, and I sure couldn't figure out how to reconnect it!  My last purchase of one-night-use-only gel pads was about $1.80 for each gel pad.  Someone recently told me that the price has gone up significantly.  If you are going to pay over $2,000 for a professional unit (the one that dentists rent out that gives the accuracy of line charts because it includes a USB connection and software), gel pads, and an extra lead, you want to be sure that you think it will be worth it.

The one worry I have about you using Grindcare is that the pattern of injections you were given seems a little unusual to me (although something not even approved by the FDA is not exactly going to have standards, is it?)  I cannot tell which muscles you had botoxed other than the masseters, and 2 single injections to the masseters at the usual strength of a single injection would probably not be enough to make your masseters weak enough to preclude clenching.  In any case, Botoxing your masseters enough to prevent clenching would prevent chewing, which is another reason to avoid Botox.  And yet you did not get the halo pattern of injections for headache (again, Botox is not approved for headache and for good reason).  So, my question is, exactly which muscles did you get Botox'd?  That is the only way I would be able to hazard a guess as to whether the Botox will interfere with using Grindcare.  I'm glad you didn't get lazy eye from an injection at the eyebrow - this is an area that should not be Botox'd.  Sometimes women who get Botox to reduce frown lines between the eyes have it migrate over towards the eyebrow and find their eyelid doesn't work right and have trouble focusing until new nerves can grow to do these tasks.  So, the fact that you did not get a case of lazy eye is encouraging.   Maybe you didn't get enough Botox to do major damage, and maybe you did not have your temporalis muscle Botox'd, which means that you can use Grindcare.  See my earlier post on how to find the temporlis muscle with your index finger.

Kudos to your wife for helping with the diagnosis.  Did you know that over 90% of men do not get sleep apnea tests until their spouses demand that they do so?  Which reminds me, there is a very very tiny percentage of people who develop bruxism because they have not only undiagnosed sleep apnea, but react to the low oxygenation by bruxing (most react to the danger of low oxygenation by waking up all night long, although neither they nor their spouse may be able to even notice it.  Anyways, I just have to be thorough here and tell you to rule out sleep apnea, especially if you have high blood pressure, are overweight, are not refreshed by sleep, etc.  Unfortunately, just as dentists are hawking Botox as a cure-all for bruxing (which it is definitely NOT), many sleep centers are similarly telling people that if they brux, they are probably bruxing because of sleep apnea, when there have been no studies I know of to show this.  Worse, I have had sleep study technicians slap single leads (Grindcare uses 3) in the general direction of my temple, getting false negative studies, then assuring me that I do not brux, when just looking at my teeth and TMjoints alone shows years of chronic bruxing!

Well, try to find out if you got your temporarlis muscle Botox'd or not.  Try finding it with your index finger and seeing if you can feel it tighten up when you clench.  It should feel like a little itty bitty bicep on a little 2 foot high man who is flexing his arm to show you his muscle!  Good luck, and I hope that you don't listen just to me - google Grindcare, and read wikipedia on bruxism, etc.  I wish that the USA's stupid free enterprise system worked as well as Europe's or even Africa, where you can buy Grindcare and get expert help on diagnosing and treating bruxism with it.  If you can find a UK or other European forum that discusses Grindcare by googling, maybe you can find someone other than just me to get info from.