Posted 8/5/2009 8:14 PM (GMT -6)

forgive me if i have already asked you some of these questions, but I don't remember answers:

if you have hereditary migraine (likely), and the migraines are what is disabling you, the only course to try is with a neurologist who also specializes in migraines (they may specialize in other brain related problems, too, like diagnosing MS, etc).  First you will need to keep a diary to try to find triggers that you can avoid.  I don't know the frequency and severity of your migraines, except you seem to be able to keep working with them.  If disabling, you would cycle through migraine preventative drugs (usually lower-than-clinical doses of various anti-epileptics, old fashioned tri-cyclics, neurontin, etc., until you see if one of them prevents your migraines.  If you are taking a vasoconstrictor (don't know maxalt - I think it is Brittish? that is in the same family as Imitrex, or Relpax, you would be trying to find a daily drug that greatly reduces the frequency of taking rescue medications like Maxalt, Imitrex, or Repax.  You don't want to be taking a rescue medication multiple times a week indefinitely, or you can get rebound headaches.

If you are not depressed, you might want to very slowly taper off the effexor, if you think any of your various headaches are more frequent or worse since you got up to an effective dosage.  2 requirements before you taper off effexor: do it slowly and under a doctor's supervision, like with all anti depressants, to avoid a temporary depression while your neurotransmitters are adjusting.  If you do taper off, don't do it during the months you are trying low doses of migraine preventatives, because you want to see if frequency or duration is affected by a single med, so you don't want to be changing other meds at the same time.  Effexor is great for those who need not only to increase the amount of serotonin, but also need to increase the amount of norepinefron, another neurotransmitter.  If you already have enough norepinefron, the effexor could make the levels high enough for some side effectst that wouldn't help anxiety or spasms, etc.  Too many people are given a serontonin reuptake inhibitor solely because a doctor doesn't want to prescribe controlled substance painkillers, they have been advertised to help with pain, but if you are not depressed except for dealing with chronic pain, sometimes it gives more side effects than therapeutic value. 

If you have tension headaches, and THEY are what is disabling,  then you would have to try to find ways to alleviate them.  When you first took soma (there is a cheaper generic version now) did it stop your headaches and pain for a few weeks?  That would be the kind of simulation that would tell a headache doctor, if the tension headaches are your most disabling problem, that stopping them is your priority.  There is even a botox course for tension headaches, kind of injecting them around your head in a sort of ring of injections, but it is expensive, not covered, and might not work.  Stress reduction, breathing and relaxation exercises all day,  and exercise are key for tension headaches, I think.

 

The main thiing is to try to get an accurate diagnosis of which is most disabling for you, hereditary migraine, depression, and if it is one of them, just get a soft mouthguard that minimizes grinding and shock, and work on trying migraine prvention first.

If you have local pain that is most severe around yourTM joint, spreads from there and causes the most disabling pain, work on getting a temporary rest for your jaw: a soft biteguard, and a short course of soft food, or botox.  If doing this stops the disabling problem,  put your $$ into trying to reduce TMjoint pain, but there is no cure for that yet, just management with finding a soft mouthguard that relieves inflammaton there, occasional somas, stress reduction, exercise, and ruling out apnea (get a sleep study with bruxism leads included) that can aggravate a TMjoint if you are jawing and gasping for breath all night long.. For a very very few, fixing a bad bite might do it.

 I think that if you haven't tried defining which approaches will tell you what is most disabling, and try to find a treatment for that, you could waste $$.

Hope this helps

Posted 5/5/2010 3:39 AM (GMT -6)
Hey, I can completely relate to you in the whole Jaw and neck and ear pain and problems.... I have been going through the same thing for over 13 years!!
 
Over the past 5 years it's gotten gradually worse and worse.. After seeing countless doctors, specialists, dentists.. etc...  I was getting no closer to help.. I was at the edge and ready to go and jump off the local bridge.. But I had a bit of extra hope when I found a highly ''recommended'' specialist at the Sunshine Coast.. (I live in Australia..) .. So I went and saw her and after being told she MAY be able to help me.. for a cost exceeding $10,000, My hope that I had built up was crushed... The next few days I hummed and ha'ed over whether I should pay that much, but I remembered that throught her speech on what she would try.. She mentioned that if everything else (including braces and Yet another set of splints!!!! I had splints for 3 years... The pain got worse, not better... There was no improvement, if anything, it was made worse!) She would try botox... THat stuck in my head for weeks after, so I thought, why not!!
 
I rang around as many Cosmetic beauty procedures i could find online and in the Yellow pages.. But only came across one that knew what I was talking about.. I went there 5 weeks ago and had my first injections of Botox.. After 10 days, it had completely helped, and I had spent the previous 5 years in bed on average 5 days a week, in so much pain, I couldn't move... It wore off a bit about a week ago (around the same time as my 1 month check up) so I received a final refill for the time being and so far, so good.. Before this, I lived with CONSTANT pain and unhappiness.. Now I have my life back :D I LOVE the person who discovered botox... Although Medicare doesn't cover any of it, because it is classed as a ''beauty/vanity'' procedure.. It's worth the price I paid for the feeling of having no pain!!!!!! smilewinkgrin
Posted 5/16/2010 10:24 PM (GMT -6)
How ironic that you post this on my first visit. I happened upon this board while doing some research for a neighbor who's son just had brain surgery and is having terrible headaches so I came looking for myself. I know I bite during the day, I occassionally find myself doing it. I have been thru years of migraine tx (I do have them) and "chronic daily HA" problems, 5 different nightguards (LOL, was told they make a kevlar? - the stuff they make police vests out of - if I wear out this one - it had a hairline crack at it's 1 yr  check back in Nov but so far it's holding out), and still suffer from crazy muscle spasms in my neck and upper back. I've also tried chiro, massage and accupunture and about 25 different pillows and a new mattress. Out of those I still see the massage but even that only lasts a couple days. Sadly, I can only afford about once a month. LOL, my soma copay is only $5, she is $75...... sigh.... if my insurance only covered alternative medicine! My PCP who was doing great with trying many different meds to manage the migraines finally referred me b/c of all the "neck HA" he just couldn't figure out and my dentist referred me to the orthodontist after her NTI wore down my bottom teeth.
 
Now these are all wonderful people - my neuro tried different injections (steroid and numbing) but they only lasted a month really and I haven't gone back b/c they hurt so much the first time and the ortho gave me full nightguard (amazingly said my teeth were great otherwise - tho my dentist sent me to him b/c she thought there was some alignment problems?)- but I wonder what they will say if I ask either of them about botox? Our area is big enough I'm sure I could find someone to do it but I'd like to know them. I have printed off your info and will definitely look into this. I was just telling my hubby this weekend that I am so tired of headaches.  I had the ice on my neck and heating pad on my back just so I could crawl out of bed to go to work yesterday....
 
So thank you for this timely posting!
 
Posted 6/20/2010 3:08 PM (GMT -6)
I have had tmj/masseter pain for the last 3 months. Thanks to the internet and all the people who post their experiences I found out that baclofen worked for some.

The pain started after I spent 45 minutes getting dental work done on the left side of my mouth. I was warned to take painkillers before the anaesthetic wore off and was bemused to find that the pain I experienced was on the other/good side.

It was intermittent and not too severe at first. Then it sort of accelerated to have a life of its own. Nothing I did or didn't do seemed to make any difference. The things I tried which didn't work were:

paracetamol
ibuprofen
massage
heat
meloxicam
trigger point massage inside the mouth (around tmj)
acupuncture ( I am a practitioner and can do this as often as I like). Interestingly the needle penetration on the left side is much "softer" than the bad/right side. Also the lower part of the right side is much denser and resistant than the upper side of hte masseter.

Finally I tried baclofen. I use this drug for muscle spasm in multiple scerlosis. It is a logical choice to interupt bruxism which had been noted by my dentist for years. I don't know if I grind my teeth at night. I'm asleep. My husband is deaf. My cat is not telling. My neighbour's cat who has sleep overs as well, also isn't telling.

I have woken up with hellish pain in the right jaw at night so I must be doing it.

The 8th thing I tried was baclofen and I am overjoyed to say that it it working. I have been taking 10mg when I am in for the night and 10mg at bedtime.

Because I have seen that tmj can be a vicious circle of pain/wind up/pain, I will be treating this very aggressively over the next few months and hope to God that it settles down.

I have read that 80% of women are better/cured after 7 years. What I am worried about is the 20% who are still suffering.

I imagine that many people who contribute to forums wonder if it does anyone else any good. Well, if I hadn't seen what I have in the last few weeks, I wouldn't even have thought of using baclofen.

I have since learned that the dose I am using for pain syndromes is much too low.

Thanks Gizmogirl for starting this thread.
Posted 6/25/2010 4:50 AM (GMT -6)
well, I've learned a lot more about chronic disabling migraines versus chronic disabling pain from clenching or bruxing in your sleep. The third disabling condition often not diagnosed or treated correctly is tension headaches.  But an expert in headaches can get you the correct diagnosis and treatment.  Don't make assumptions that ytou have migraines and go to a migraine specialist, because he won't check to rule out a possible wrecked TMjoint due to clenching or bruxism.  And remember that bitegaurds won't do much more than protect you from wearing out or cracking your teeth/denta work - having a bad bite is so commonly diagnosed since the dentist knows that it MIGHT be triggering the clenching or bruxing, so in his hopes that he has a treatment,  he tells you he will fix your bite and nothing gets better except his income.
 
Make sure you don't get botox until you know that it is an overactive masseter muscle clenching at night, and in my case, since no one could figure out how to treat the chronic pain causing me to clench, I have wrecked my TMjoint and it is now harder for the (finally!!) bruxism cure to work.  Called Grindcare - like an ipod but does great stuff to stop most from bruxing/clenching.  You have to find a friend in Europe to buy it for you and send it to you (order many extra packs of EM lead stickers (instead of ear plugs, you put a little EMG pad on your temple.  Grindcare will stop most bruxers in a couple of months or so, but you need to know that you are treating the right cause of your headaches.  Bruxers/clenchers/grinders often notice that headaches are one sided (worst jaw joint), include earaches or tenderness that is not due to infection, and that their salivary gland on that side under the jaw gets backed up and swells a little.  These few outward signs of internal inflammation and swelling can be only the visible parts of intenal swellingn and inflammation around the bad TMjoint that is strangling nerves and generally causing pressure type pain as well as referred pain.  Mayo clinic is finally starting to advertise on the web for reconstructing tmjoints with titanium - again, be sure that you do not go for it until you have ruled out migraines and tension headaches, and confirmed clenching/bruxism.  Hopefully products like grindcare will help people avoid reconstruction, and thankfully there are now these two avenues for those so disabled and in such untreated pain that they are desperate.
To the person who got relief from cortisone shots, it might still be worth another course of them...if they hurt, that might mean that the doc found the inflammed spots, and later injections often can be done with less cortisone, so if you can figure out and change the bruxing/clenching behavior after a few months of cortisone, you might be able to get past it for good.
Watch out for doctors wanting to use botox to weaken your strongest clenching/bruxing muscles (usually masseters and temple).  If you don't figure out how to stop whatever caused you to brux, you can't keep using Botox without risking too much damage permanently to muscles, or worse, having other muscles around the ear or towards the back of the temple (under hairline) step up and start bruxing.  Now you are stuck with something harder to use grindcare on.
Just to review one more time: cycle through all the anti-migraine drugs to rule that out before you start looking into tmjoint sleep disorders like bruxism and clenching.  If bruxism/clenching, get a soft bite guard to protect your teeth and make damaging hte TMjoint a little slower - then look into getting a scan to see if your ball and socket are still ok, if the disc has been jammed in front oif hte joint instead of between it, grindcare, etc.  good luck
 
Baclofen for bruxing/clenching can really help - actually any strong muscle relaxant or heavy duty depressant can interrupt the habit, but since you can habituate to the drug, it isn't a cure, and although it can be sufficient for someone going through temporary stress resulting in temporary bruxism or clenching while sleeping, it will eventually fail to work in dosages that let you be lively during the day if you don't stop whatever got you bruxing or clenching in the first place.  Hopefully grindcare will be available soon in the US!
Posted 6/25/2010 3:09 PM (GMT -6)
I hope the baclofen will give lasting relief. I intend to carry on with it for a total of 10 weeks. This is the duration of my pain before I found baclofen, which seems to be curative, at least for now. I figure that my nervous system has been in overdrive for this time, so it could easily take this long to settle it down again. Because of the potential for hallucinations and seizures I intend to withdraw gradually.
 
I forgot a few treatments that I had taken as well. These were Tramacet ( a paracetamol and tramadol mixture), zopiclone, a sleeping pill and clove oil (for toothache), which I don't actually have, but I thought I would try it anyway. These gave me good nights when I tried them but I don't think they would be great long term. I have to drive every day and that is a big consideration.
 
After web searching, as you do, I added in naproxen. This non steroidal anti inflammatory has a better success rate than ibuprofen or meloxicam in tmj. I also know that it has a better profile in preventing cardiac events compared to other nsais. 250mg had no impact, but I have found 500mg in the morning has kept my jaw quiet during the day.
 
I can only hope that my relatively early intervention will pay off.
 
There is nothing fair or predictable with chronic pain syndromes.
 
I hope my experiences will help someone else with this awful problem.
Posted 7/10/2010 12:00 AM (GMT -6)
well, perlymerly, glad you got some relief with baclofen.  A dental visit can worsen the pain caused by bruxism (whether clenching or grinding), but if anti-inflammatories, resting of the jaw (soft foods), etc., don't cure it in a matter of days, you are probably bruxing to the point of causing local inflammation, pain, and referred pain...so you have to stop bruxing if you want to get better.  (Of course I am assuming that you have ruled out migraines).
Most people brux for temporary periods of their life, in childhood or during stress, or even during menopause.
Bruxing becomes a problem is disabling only if you do it as an unconscious habit in your sleep for a long time and start damaging your teeth (which a soft mouthguard can protect) or your temporal mandibular joint.  It is a sleep disorder, a neuro-muscular one, that is not often diagnosed or treated properly because dentists and doctors haven't had good ways to diagnose or treat it.  Now that there are products that use EMG like Grindcare to diagnose it for certain, and stimulation to treat it, you can avoid years of expense and pain. 
 
The FDA has approved Grindcare, but I think some U.S. company with a patent is trying to get a chunk of Denmark's well-deserved income for their ingenious device, so I don't know how soon you can buy/rent it here.  Find a friend in Europe, who can buy it with a credit card, if you are becoming disabled and really need to use it now.  That's if you are at the point where you start getting pain from inflammation, which can hurt itself, and from muscle spasms, and from referred pain.  You really need a product like Grindcare to know if you are bruxing alot in your sleep, and, if you are indeed bruxing alot, to retrain your muscles to stop the habit.  Be wary of the few sleep centers who say they can slap on an emg lead to test for bruxism during an apnea study (apnea is a common cause of long term bruxism), since they are often not very careful with checking that the spot they stick the lead on is the spot exactly over your temporalis muscle....make sure that you clench a few times, with your finger and then the tech's pressed over the temporalis muscle so they are feeling it flex very obviously and know where to stick the lead.  Even if a sleep center does test for bruxism, they don't have a product like Grindcare's combo EMG-plus-stimulator.  Grindcare's lead tells if you are bruxing or not, and delivers a little tingling to gently get you to stop - and you need both - just knowing that you are bruxing is not enough.  Although a dentist can tell indirectly if you are bruxing, after you do it long enough to wear off your dental enamel, remember that any long term bruxer cannot expect a short course of Botox, TM joint replacement, nor a short course of muscle relaxants, anti-inflammatories, tri-cyclic antidepressants, etc. to work.  Botox will in fact make using an effective treatment like Grindcare more difficult. 
P.S. you said that you think that your nervous system has been "in overdrive" since a dental appointment 10 weeks ago.  In the hopes that it is just a temporary bruxing, make sure you exercise aerobically in the daytime, so that you are relaxed when you go to sleep.  Also, for future dental work, you can ask the dentist to use a "bite block".  This is a triangle of rubble that he'll insert on the side away from the dental work to be done, and should be the smallest size that still allows the dentist to do the needed work.  Dentists always have them available because it not only stabilizes the jaw during dental work (your's), but is good for preventing kids from biting dentists!
Good luck
Posted 7/10/2010 2:07 AM (GMT -6)
perly-merly, you might want to go back to the dentist and have your bite checked on the side they recently worked on. If that side was left a little higher than it was before, any clenching could make the other side hurt more.

This happened recently to a friend of mine. When the dentist checked, her filling was a bit high. He took off a bit and her jaw pain went away. It's something that can be checked and fixed easily so it's probably worth a shot.

Good luck.
Posted 7/27/2010 1:41 PM (GMT -6)
I have taken naproxen (a non steroidal antiinflammatory drug) for just over a month.  After I learned about tmj joint trigger point massage on you tube, I was very quickly aware that my right tm joint was acutely tender and my left one wasn't.  My ESR was 17 which is very slightly raised. This is a non specific test of inflammation. After this time I can say that my tm joint is no longer tender. I am still getting some occasional masseter pain and will be staying on the baclofen for some time. I read about some anti inflammatory thing called Zyflamed (or similar) and I have ordered this as well. 
 
 So far, so good.  Thanks for the tip about the bite guard. If I am fortunate enough to be symptom free at the next check up I intend to use baclofen in higher dosage for a week or so after to avoid a flare up.  My dentist did check my new filling and seems to think it is level.
 
 
Posted 7/27/2010 1:47 PM (GMT -6)
Also, I forgot to say, I was so impressed with the baclofen, that I prescribed it for a poor young girl who has had to stop college due to a severe chronic headache (not analgesia related). It worked like a dream at 10mg three times a day. Her problem, from which she has already seen a neurologist, had been going on for 18months. She can now look to restarting college, in the nick of time for the upcoming semester. This drug is just not on people's radar for chronic pain treatment. I wish it was.
Posted 7/29/2010 5:47 AM (GMT -6)
Beware of diagnosing by trying different meds.  You could think that you have bruxism and it is causing all your pain and/or headaches, when it can be from something else.   Trying drugs is indeed the best approach to try to find a preventative for hereditary migraines (cycling thru sub clinical dosages of various anti-spasmodics, anti-epilepsy drugs, tri cyclic antidepressants, etc., to see if it will prevent or greatly reduce migraines. 
 
When you have ruled out migraine, don't assume that you have bruxism.  Severe bruxism can be enough to wreck the TM joint and/or cause severe referred pain).  When this is the diagnosis, almost anything can temporarily short circuit this chronic neuromuscular dysfunction, at least for a few weeks, whether it be muscle relaxants, narotic pain killers, etc.  But you develop tolerance to these things eventually.  Maybe you are one of the lucky ones going through a few-week-case of temporary bruxing, that will go away on it's own with exercise, stress reduction.  If not, well, then you still have to get a confirmation that chronic bruxism IS actually your problem, and then find a treatment to stop it, not just temporarily  mask the symptoms.   That's why Grindcare is so good, because it is the first really effective, easy-to-use monitor that tells whether or not you are bruxing, and how much (and also has a mode to send tingles to the temporalis muscle to retrain you from brusing).
 
Since it's potentially a big waste of time and $$ to assume severe bruxism try to get it diagnosed or ruled out.  And since muscle relaxants and pain killers can only treat symptoms (along with developing tolerance), they are not a long term strategy either.   If you are severely and chronically bruxing every night for years, you will not only wear off the enamel of your tetth, but possibly become a chronic pain patient as your TMjoint(s) get wrecked and referred pain and spreading inflamation give you first earaches, then even makes the salivary gland on the wrost side look forever backed up and swollen due to the pressure from inflammation, and develop muscle spasms and referred pain, that can go up to the head or down the neck.
 
So it is important not to think of muscle relaxants, cortisone shots, narcotic painkillers, soft thin nightguards, or tranquillizing tri-cyclic antidepressants as cures, since they just treat symptoms temporarily (of course that's fine for a temporary phase of bruxism, which we all go through at some points in life).  Rule out other possible explanations for your pain, then try - increased exercise so you sleep more relaxed at night, stress reduction, a soft thin springy nightguard, but, best of all, products like grindcare that for hte first time give you a definite diagnosis (or definitely rule out) bruxism, as well as curing 80% of clinical trial patients in 6-8 weeks.
 
Again I ask if you and your college friend are making sure to do aeronbic (sweaty!) exercise each day to make sure you can sleep better at night, since this can sometimes be enough to reduce temporary bruxism and/or tension headaches.
 
Anyhow, to sum up, I am still hoping that you get a difinitive diagnosis so you can treat the right thing, and not be taking just symptomatic drugs to which you will develop a tolerance.  If your muscle spasms are caused by nerve pain, sometimes tzanidine works better than baclofen, because it is short acting, so you can take it several times a day and more at bedtimes.
 
I hope the young girl who got relief from bacofen, the one with a neurologist, has ruled out migraines, cycled through the drugs I mentioned above, tapers off any SSRI's or gabapentin (neurontin), that can increase bruxing for some people.  I also hope that she has documented dental damage associated with chronic bruxism, and if so gotten a thin soft mouthguard, which can reduce damage to the TM joint, and especially to the teeth.  Otherwise, she may be treating the symptoms from her headaches with baclofen without identifying and treating the cause, in which case relief could be pretty short term.
 
Good luck!  At least finally we can get a certain yea or not diagnosis!
Posted 8/12/2010 10:13 PM (GMT -6)
I have TMD and had Botox followed by Arthroscopic Lavage in both right and left joints a little over 4 years ago. Probably 1 year after surgery all relief was gone :( It was great while it lasted but now I'm back to headaches and my right ear constantly feels like there's "something" in it (I have the doctor look at it every time I go in only for them to say "nope it looks great" lol, yeah yeah) not to mention my insane jaw pain. I have splints (I've had 10 of them to be exact all sizes, materials and types known to mankind I believe) and no they don't help. I don't care what's in my mouth or how much I paid for it I'm going to clench it. Have your Oral & Maxiofacial surgeon look at your jaw joints thru an X-Ray. Mine are flat, no ball and socket here-due to years of grinding. At the time I had the X-Rays I was 21 yet my jaw joints were the worst the office of 10 Md's had ever seen...comforting!
I had been on all the muscle relaxers and nsaids for many years (ages 16-23)to control the symptoms from TMD and now my body has such a tolerance to them its hard to control a simple hurt shoulder or headache.
TMD is horrific and its incredibly disheartening you have to fight with most insurance plans for coverage on any surgery for TMD. Botox has not been approved by the FDA for treatment for TMD hence insurance companies not being responsible for payment.
Someone....research and find a miracle cure that's paid for by most insurance plans, and is long lasting...then wave a flag!
Posted 8/13/2010 10:47 PM (GMT -6)
Terrible ear pain and headaches lead many clench sufferers, who have ruined their TMjoint, to useless treatments.  I had the athrocentesis (TM joint flush) like, you, even an oroplasty (had the bones of my ear shaved in hopes of reducing the pressure).  The oroplasty only made a slight improvement in the ear pain...the inflammation from using my ruined jaw (ugly x-ray and scan, like yours, with the disc jammed painfully to the front of the ball).
Because there has never been effective treatment for clenchers (splints just protect teeth, not TM joints), clenchers are desperate and not helped...for example, the Mayo Clnic is advertising that they can rebuild with titanium the ball and/or socket, but admit that it relieves pain only sometimes.  Such incredibly expensive and potentially useless surgery should not be advertised, now that there IS a cure for clenchers and bruxers.
The FDA has approved a great new product that does both diagnosis and treatment - retrains you not to clench at night.  Not much more complicated or larger than a small ipod, it was developed by the biggest Danish university and their government, and it is called grindcare - search on the web for it.  It actually does and charts your muscle clenches during sleep, and if you ARE a bruxer, it zaps you with a tingle to interrupt your clenching.  It is a way to go from having no life to a life again.
There is another product, from a U.S. company that is like a headband, that supposedly reads muscle clenches and beeps a tone to try to interrupt clenching. 
They both do electromyography of the temporalis muscle, but Grindcare is adjustable...you can position it exactly where your particular clenching muscles are, and it does a silent (adjustable strength) tingle that is silent.
So, of course, the U.S.A. company is trying to prevent Grindcare from being sold in the U.S.A., using patents to say that their invention was first and Grindcare shouldn't be allowed.
So, I just got a friend in England to do the actual purchase and mail it to me.
Once you have ruined your TMjoint, there is no cure, but if you can stop clenching during sleep (up to 400 times more force in one night than a days worth of chewing meals), you can reduce the pain to the point where, like me, you can function again.  Someday dentists are going to rent Grindcare out to people, so that they can finally get an accurate diagnosis, but I just bought the unit myself because my headaches and neck spasms (3 titanium neck vertebrae already bother me!) had made me completely disabled for years.  After a couple of months, I am starting to have a life again!!! Grindcare will change so many people's lives.  Hope you can get it and that it works for you, too.  No matter how damaged your TM joint is, you will feel infinitely better if you are not killing it all night every night. Good luck.
Posted 8/15/2010 3:46 PM (GMT -6)
Thanks for the info! The US company can keep thier headband thing, I was in orthodontic care for many years and I believe that is what started my jaw issues. From headgear, elastics, expanders, gum grafting and biofinishers to name a few I don't want another thing disrupting my bite! I'll look up Grindcare even though the whole "zap" thing makes me giggle as a visual image of me sleeping and getting zapped runs thru my head!
I'm glad you're feeling better...trust me from someone who knows how it feels, just to know someone isn't feeling this pain anymore it makes me smile!
Posted 8/22/2010 7:56 PM (GMT -6)
life sure is better with grindcare - I can count on having some great days every week - a huge change from having been someone who could never even make an appointment without a feeling of hopelessness!
 
Grindcare's adjustable tingle isn't strong enough for my liking, but today's battery technology is probably a limitation.  So, adidasjuly, don't worry that you'd be getting tazed by Grindcare, ha ha!  A tingle reminder sure seems to me better than an alarm ringing out loud, especially if you share a bed.  Also, I cannot imagine how anything but grindcare would work for people who have botoxed temporalis muscles and still brux - you need to be able to place the EMG leads exactly where your clenching muscles are (try placing your finger over your temple and see if you can feel your temporalis muscle when you do a clench).  It just makes sense to me that grindcare is completely adjustable, so it is going to work for all chronic bruxers.  Expensive little gel pads, though, more than a buck a night, but 80% of bruxers find they have relearned within 8 weeks or so.  I'm going to give it at least 6 months or even a year, just because I never want to be completely disabled again!
 
I have a hard time deciding which of grindcare's 2 features is more revolutionary: that it's the first accurate diagnosis tool for bruxism, or that it actually treats bruxism effectively.
 
Splints only protect dental work, some of which have actually made my TMjoint damage worse.  And dentists ignorant of Grindcare (99.9% of dentists) still hope that sore TMjoints are a result of malocclusion, since at least they know how to do something about that, while they don't know that chronic bruxers (grinders or clenchers) need diagnosis and cure, not splints nor suggestions to relax. 
 
Everyone goes through periods of bruxism during their lives, but when it becomes chronic TMD, the damage it can eventually cause can be completely disabling.  At least future generations will have products like grindcare to avoid the hell we have been through - I have been misdiagnosed as having migraines, misdiagnosed as mentally ill, misdiagnosed as having MS (when I get enough local inflammation from bruxing, the lining of my brain inflames and swells, and because skulls aren't inflatable, the pressure on my brain itself causes venous occulsions in it - little vein pops in the brain that can permanently snuff out bits of capacity).  And, believe it or not, none of these misdiagnoses, nor being patronized or written off as malingering are even a zillionth as hellish as the plain old pain itself, from severe, chronic bruxing, which grindcare is finally freeing me from. 
Posted 1/5/2011 4:40 PM (GMT -6)
I would love to hear how the Grindcare is still working out for you. I've been battling this for almost 3 years now (it started when I was forced to keep my mouth shut TIGHT with a CPAP) and I am miserable. The daily - oh, let's be honest and say neverending headaches, ear pain, all of it - I am beyond over it. I've got a few friends over in Europe who I could send to the store for me. But I'd love more feedback first before dropping that kind of money...

PS, And not just because I want to feel better, I hope it has worked for you so that you feel better as well. :)
Posted 1/5/2011 9:05 PM (GMT -6)
Hiya,
 
yep, Grindcare has definitely made the difference between life and death for me.  But that's because it properly both diagnosed AND treated me, because it was bruxism that was sending me off the cliff of bearable pain.  If bruxism isn't your biggest problem, you will have spent the bucks on Grindcare, just to find out that you have to find what is it you really need to treat.  Since litigants in the Darwinian world of USA patents are trying to hold up sales of FDA approved Grindcare in the USA (hoping to cash in?), I don't know how soon you can rent it from dentists here in the USA, which will make diagnosis out-of-pocket affordable.  So, dentists and bruxism doctors in the USA are not very aware of Grindcare.  I remember one forum where a bunch of dentists tried to troll me out, saying that I must be a salesman for Grindcare, etc..  The old saying is really true that if someone's salary depends on not understanding something, it will be hard to convince them!  At least Grindcare doesn't need me in the least, because they have actually done the gold standard studies themselves, and you can google and investigate it for yourself.
 
If you have not exhausted all insurance covered tests, you might want to do so, and be sure that your teeth show evidence of chronic bruxing, before going to Europe to buy Grindcare, again, because it's not available for cheap, short term rental here yet.  For example, some people with hereditary migraine think they are bruxers, without even having gone through the hereditary history analysis and the process of trying out all the anti migraine drugs.  Some people who have other kinds of headache, jaw, or ear problems assume that they are bruxers, and that concentrating on bruxing will work, without knowing if bruxing is actually their main problem.  In the case of migraine, you have to try treatments that might prevent them, to confirm the diagnosis of migraine, which is very frustrating and can be a lengthy process of tapering on and off different drugs.  So, with migraine, you have to make assumptions and try a treatment for your assumed problem.  Doing the same for bruxism can get expensive if insurance doesn't cover it.  Grindcare doesn't diagnose by treating first, luckily.  But it is not cheap here yet.   It's great that Grindcare will tell you yes/no definitively on bruxing, like a sleep study will tell you definitively yes/no on apnea.  Of course if Grindcare tells you the answer is no, you have spent the $$, and have to try to sell anything you've bought, used, for whatever price you can get?
 
At least I can hope that you have not gotten Botox for bruxism, which couldn't be a worse idea.  Diagnosing by treatment is sometimes (rarely) necessary, like with migraine and some other painful conditions.  But diagnosing bruxism by injecting Botox, that migrates (including to the brain) and can reduce your sensory nerve capacity for biofeedback long term, is really bad.  I know, cause I did it before Grindcare got FDA approval, and it just made everything more difficult (I recruited some weird muscles to brux after botoxing both masseters and temporalis!).  I would say to anyone that is considering Botoxing their masseters or temporalis muscles for bruxism, that they should first taper off any serotonin reuptake inhibitors, taper onto a sedating anti-depressant, then try a strong muscle relaxant/sleeping pills, to see if that gives significant temporary relief.  Then you at least have a little bit of an argument for treating bruxism, although it's still not definitive like Grindcare.  And I would still say no to Botox - it's permanent problems after at best temporary relief if you really have chronic TMD.
 
I see some ad at the top of this forum's screen right now, for an elasticized cover for a warm/cool pad, that goes around your head, that purports to stop migraines(!) and headaches, and to give immediate relief 'at the push of a button' - it is truly disgusting to see how many people want to make a buck off the desperate, offering anecdoctal evidence, diagnosis-by-treatment, or just plain lies.  'There outta be a law' enforcement in the USA, like in Europe!
 
Anyways, back to  Grindcare: it has not stopped all my chronic pain, nor the partial paralysis from the broken neck, etc.  But it has taken me from a vicious cycle that was killing me, to wanting to live and wanting to see just how much strength I can regain.  I have tried to stop the biofeedback mode, and after a couple of weeks I was back to bruxing all night, but I am certainly a very unusual case because off all the severe trauma to my nerves, muscles, ligaments, bones, my chronic pain, my metal vertebrae, all the blown discs pressing on nerves, etc..  I think when you do the googling and reading on Grindcare, you find the studies on how most people who are bruxers can retrain themselves in a matter of weeks.
 
Grindcare is not quite as easy as turning on an ipod, either.  It's like learning to brush your teeth as an adult, which anthropologists have found is a difficult and frustrating job for many of those adults who have never seen a toothbrush.  Precisely because our brains are wired to forget how long it took to learn to drive, walk, brush our teeth, etc., it is always a bit of a surprise to try to change a deep habit.  I know just from having to learn to sleep on my side or back after barious operations. 
 
I have to be the champ of people who find it difficult to use Grindcare, with my reduced sensory nerves (Botoxing for bruxism should be a crime, imhop), my centrally sensitized nerves, my dry skin (I always have to moisten the gel dots on the disposable, use-once sticky pad - I have incredibly dry skin even for my advanced age!).  However, I've got it down now to about the same time as brushing my teeth - a little over 2 minutes.  Since it is literally the difference between hope and dying for me, that's fine by me. 
 
How to conclude? 
 
1. Make sure that TMD bruxing is really your problem as best you can, before laying out $$ to do your own sleep study using Grindcare, because it is expensive.
 
2. Beware of sleep centers that say they check for bruxism! Twice I was told I don't brux, once before botoxing for bruxisim, and once after.  Actually, the tech slapped a lead in the general direction of my temple, and got no data while I was sleeping.  Put the pad of your index finger over your temple.  Now clench, hard.  Feel the temporalis muscle clench under your finger.  Although the masseters do the main work, this is a very convenient muscle for tracking bruxism, and for biofeedback.  I like Grindcare's triple lead better.  But if a sleep center offers to slap a lead on your temporalis, make sure they put it in the right place, OVER the temporalis! Make the tech feel the temporalis muscle clench with his/her finger, like you have done!
 
3. Be ready to spend time getting a routine down that works.  There is good reason that the inventors of Grindcare think many will want to rent from a dentist, and not just to save $$.  If you can't program your VCR, you might want to make sure a savvy family member is completely committed to helping you get a routine that gives you good data each AM.
 
4. Buy an extra lead or two, in case you yank it in your sleep like me, eventually wrecking the connection. (I even use paper tape for sensitive skin, over the lead, to fight my yanking it when I move my long hair off my face during my sleep!)
 
5. Understand that this is a product that can diagnose only one condition, and treat only one condition (bruxing), so that if your biggest problem is something else, all you'll get for your $$ is that you don't need Grindcare, and that you still have to figure out what the biggest problem really is.
 
6. Do your best to rule out other conditions, try sleeping pills or muscle relaxants to improve quality of sleep, old fashioned tricyclic antidepressants like amitryptiline (avoid serotonin re-uptake inhibitors or taper off and onto a non-serotonin inhibiting anti-depressant. Serotonin re-uptake inhibitors may be causeing bruxism in many people).  Make sure that you have tried all the old fashioned ways of improving sleep disturbances, like daily cardiovascular to a good sweat, avoiding stimulants, breathing exercises, and all that good stuff.  What good would it be to stop or reduce your bruxing, if it is just one of several chronic stress reactions, and those others are still slowly hurting you?
 
I talked to one of the top people in jaw disfunctions at UCLA, and he told me that he would not prescribe a custom made mouthguard for me that prevents my moving my jaw at all.  He said that the jaw is a complicated joint that wants to move in many directions, and that immobilizing it can make you fight that, causing more problems.  I used a darn CPAP machine for 18 months, and certainly did not enjoy the mask, but it didn't seem to affect my bruxism (I used CPAP to be triply sure that my occasionally borderline air volume, while on high doses of muscle relaxants, which wasn't even enough to cause apnea episodes...my sleep studies weren't recording apnea episodes, but the doctor thought maybe some nights at home it was happening.  Well, I don't have apnea, it it wassn't kicking off bruxism. And, although I didn't like the pressure of the mask, it wasn't kicking off bruxism, so be careful on your assumptions). 
 
I have heard many people who think that a single dental appointment caused chronic TMD and disabling pain.  On the contrary, I had tons of TMJoint damage from car and sports accidents dislocating my jaw, so much damage from various surgeries, some wastefully diagnostic, and other surgeries that caused alot of nerve damage and chronic pain, and I also bruxed for decades, before I ever bruxed enough to disable myself from it. 
 
But, once I got bad enough, I really learned what bruxing can eventually do.  When my trigemial nerve gets inflammed, one salivary gland backs up visibly from the swelling (inflammation) that spreads from the sorer of my TMJoinst, when my ear closes (despite an oroplasty that widened the canal by shaving off bones), when I am getting nosebleeds from the inflammation moving to my sinuses,  and worst, when the lining of my brain gets inflammed (somewhere between migraine and meningitis level pain, although I have neither condition), when my peristalsis stops completely from pain, and I cramp up all over from pain, well, I seriously thought death might be the only way to reduce the pain.  I didn't care that some of my doctors were trying to call me a malingerer in frustration at being unable to help me - I cared only about reducing the pain that made my whole body writhe.  All I could do was take massive doses of muscle relaxants, many grams of neurontin, painkillers, and other drugs daily to keep me at best semi-conscious.  Thank god that the resultant concussions made me zombie enough to rest up, thinking I'd figure it out someday, which I finally did with Grindcare.
 
If only it were a prefect world, we could inexpensively get a clear diagnosis on whether you are bruxing alot in your sleep or not, and then reduce your bruxing, and be talking about hundreds of dollars, not thousands.  We are almost there (they are in Europe, and someday litigation or patent trolling or whatever else is holding up USA Grindcare sales will be finished).  Even though too many USA dentists prescribe fancy pricey mouthguards, hoping misalignment or malocclusion is THE cause of your bruxism, it could be the cause for some patients.  These patients would not be relieved by Grindcare alone, although at least Grindcare would identify which patients need more help. When we can rent it here cheaply it'll be great.  And when you can rent Grindcare cheaply here, you'll see how much of a bruxer you really are, on the morning line chart, easy enough for a 5th grader to understand.  Until then, we'll still have the problems of no simple, certain, cheap diagnosis/readout (analogous to the sleep study for apnea).  Without this, you can fall into the realm of using various (sometimes expensive) treatments as diagnostic tools, which can really add up without helping you (unless the guess turns out to treat your specific problem).
 
Hang in there, and become an expert about your own problems, is my best advice for you.  Bruxism isn't causing as many problems as people would like to think, and when Grindcare is as cheap here as it is in Europe, those who really need it will get it affordably, and millions of people may get out from chronic pain.  Until then, you have to become as informed as possible before spending out of pocket $$ to try to nail down the correct diagnoses and treatments for you.  If I made it through 10 plus years of screaming, phantom-limb like pain and then got relief, I am hoping you will get better than me, and faster!

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