Jaw Pain Discussion

  • Wendles
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8 years 1 month ago #11685 by Wendles
Jaw Pain Discussion was created by Wendles
Hi Fee
I originaly learnt it for my work as we had a deaf child starting at school so many of the staff learnt Auslan. Several of the teachers that were learning went back and taught/practiced with there class which also meant that there would always be some students for the new child to talk to. So my child was learning it too. We could sit at the dinner table and chat without talking, my husband wasnt so quick to learn it. But there are days when it hurts too much to talk so it is good to be able to still comunicate.
I get what your specialist says about limiting who you talk to but isnt that already happening, when your jawa is bad you talk to no one. Your world is shrinking. This could at least open it for your family. There isnt that many out there using it where I am population of 4,000 = 2 families and 20 school staff who have a basic and students who have some. So now that I write it down its quite a few.
I will find my work notes today and my list of contacts, ok

There is always a SMILE
in your day,
you just need to find it!

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8 years 1 month ago #11687 by BIY
Replied by BIY on topic Jaw Pain Discussion
Hi Wendles,

I have moved the jaw discussion to this new thread and popped your experience and info on sign language as a way of communicating when talking is too painful over here because there are a few on this site with chronic jaw pain and I thought it could be helpful to put all the info in one spot. It would be good to swap info re experience, treatments, diagnoses and causes.

Temporomandibular (TMJ) or jaw dysfunction is further down the food chain even that Chronic Pain Syndrome, in my experience, with many doctors and even regular dentists being very slow to recognise the presenting symptoms often incorrectly diagnosing it as other conditions and, therefore, incorrectly treating the root cause. There are also different types of TMJ dysfunction ranging from muscle problems, bruxism (clenching and grinding) to disc dislocation causing the joint to misalign and press against the socket bone without any cushioning. Symptoms can range from mere inconvenience for a few weeks or months that muscle relaxants, resting the jaw and a soft diet will cure to a completely debilitating condition that incorporates severe facial pain, difficulty talking, neck and shoulder pain, headaches and migraines.

Degeneration of the condition through misdiagnosis and proper treatment can then have the flow on effect of the condition becoming chronic and also the further complication of Chronic Pain Syndrome and Neuropathic pain developing making it even harder to treat a condition that is already difficult to treat once it's become chronic.

Hoping to hear of others experience with how jaw pain started for them in the beginning (organic or injury), their journey with treatment, and any helpful tips or treatments to help manage this condition. All of us on this site have CPS so it would be good to have info in one place on managing jaw pain as chronic condition.

Best wishes,

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  • grappers
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8 years 1 month ago #11689 by grappers
Replied by grappers on topic Jaw Pain Discussion
Fee not only would learning sign language benefit you and those around you to communicate, look towards the bigger picture helping those in a similar condition as you in getting the message across, and being able to do that by sign. If you ask me it should be taught at schools and not just schools for the hearing impaired, it should be treated like any learning of a language but learning sign would break down a lot more barriers than just any language, sign is universal with not much dfference world wide so sigh can hold a bigger audience than speach alone.


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8 years 1 month ago #11690 by di
Replied by di on topic Jaw Pain Discussion
Great suggestion Wendles.♥

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8 years 1 month ago #11692 by BIY
Replied by BIY on topic Jaw Pain Discussion
Hi Wendles and Hopeful_Kate,

Love to hear a bit more about your chronic jaw stories, how it happened and what treatments you've had thus far for it.

Let me know how you go with your first appointment at our same oral specialist Kate.

Hi levels of pain all night and this morning have had me researching on the internet since the early hours. I found a few interesting links that I'll put up here in case they're useful.

Botox is one option that is explored in the TMJ discussions I read and another option discussed is a device called Grindcare which uses bio-feedback to retrain the brain to stop night time grinding which puts immense pressure on the facial and TMJ muscles causing severe pain and referred headaches, migraines, neck and shoulder pain.



The discussions go from 2008 to 2011 and I followed one woman's story (could relate to a lot of her struggle in initially finding a diagnosis then ensuing struggle to find treatment that helped and the severe debilitation the condition caused her). She initially had great success with Botox, but then found it weakened her muscles over time and this finally let her to the Grindcare device which she's had significant reduction in pain levels with. I am going to ask my oral specialist about it next time I see him.


I've had the Botox twice now into the masseter muscles, but could not have the full protocol because it had to be borrowed from where the Botox usually goes at the base of my skull for the migraines so this affected the usual success of the Botox reducing my neck, shoulder and headache pain this time and had more migraines than usual after a Botox treatment. I'm going to ask the Neurolgist when I get my next Botox treatment if I'm only allowed to have a certain amount of Botox because of workcover approval, or if it's because you can only safely have a certain amount in the head area at one time. From my research, it would seem that there are several other points in the face that you can inject for TMJ treatment and it's a lot more units of volume than I had. The small amount that I had into the masseter I don't think was enough to make much difference.

I have also been weaning off the Paxam (muscle relaxant) because it is a benzodiazapine and shouldn't be used long term plus I have built tolerance to it so it became less effective over time. However, I think this has been a bad move until starting treatment at the new Pain Clinic or asking the Neurologist about increased Botox treatment or trying the Grindcare device as I am now almost constantly at 9 to 9.5 out of 10 pain levels day and night and this can't be good overall for a central nervous system that's already oversensitized from CPS so I am going to go back on the Paxam's original dose for the moment. I can't take any painkillers because of intolerance and the pain levels are driving me to that desperation level again which is not a good or helpful place to be in.

Love to know if anyone else has investigated or been treated with Botox or the Grindcare device for jaw pain?

I already have a splint which I have worn at night for the last 3 years since an MRI confirmed jaw disc dislocation (I was only a short step away from Lockjaw the oral specialist told me by the time I got to first see him 4 years after my injury). But this doesn't stop the involuntary grinding and I have worn craters into my splint from the pressure of my teeth into it.


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8 years 1 month ago #11694 by BIY
Replied by BIY on topic Jaw Pain Discussion
That's a very good suggestion about it being taught in schools Don.

I've had such mixed advice from medical professionals about this whole thing because I asked earlier in the year both about learning sign language and also about going to a speech therapist to learn how to speak in a way that used my jaw less. However both ideas were canned from the perspective that it is not the ideal solution to cut out using the muscles in the face long term in this way as muscles can atrophy and also, I was told by the physio, that if you change the way you speak to use the jaw less as in like talking through your teeth and not moving the jaw much, it can then lead to strain on other muscles causing further complications.

The ideal solution would be to find an effective treatment to manage the jaw condition itself better so that the face muscles can be used in a more normal way and exercised appropriately. My oral specialist is working on a device that is like a top and bottom splint with repelling magnets in each so you can't clench at night. However, this has been a long time in developing and is still at the experimental stage. I've tried a couple of prototypes, but the magnets weren't strong enough and I was still able to bite down on them. I'm up to 'burly truck driver' strength as my oral specialist called it, but I still don't have the new splint yet as there have been many problems in creating it because it is new technology. There is also mixed consensus, from the research I've done, whether long term use of splints that change your bite to such a degree can cause more problems than they will fix. This splint has been on the horizon for about 3 years so I have no way of knowing how long before it will be available and then it will also take time to see whether it is effective in helping on not because it is new, experimental technology.

However, the sign language could be a good way of overcoming the hump during the 'hoping for a better management solution' time. I wish I had gone ahead with the idea when I first thought of it earlier in the year cos I would probably know how to use it to some degree by now, doh! This is an inherent problem we face with different medical opinions guiding our progress in this CP journey and, when it is all a bit foggy and we don't have the medical expertise, it is very easy to get taken down a path that is different from your own idea.

:) Fee

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