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Old 07-11-2012, 12:29 PM   #1
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Head/neck/ears worse than jaw?

Hi everyone! I'm new to learning more about TMJ disorder and have an appointment with a TMJ specialist in late August. Until then, I wanted to see if anyone else shares my experience and/or has advice in the meantime. My jaw has had mild discomfort for a long time and it still isn't severe pain at all. It definitely clicks and pops often and most of all, it just feels tense and awkward, like I can't get comfortable. I used to clench my teeth at night and could tell in the morning, but I don't do this anymore. My TMJ area gets more sore as the day goes on. It feels best in the morning. I try to relax my jaw and keep my teeth parted, but I think I hold tension in this area.

My most significant symptoms are involved in my head, neck/upper back, and ears. Do any of you feel that your worst symptoms are NOT in your jaw? I've had tinnitus for many years and it absolutely never stops. I can make it worse with certain movements. My ears occasionally get stuffy when my neck is bothering me more, and my hearing goes out more often during those times too. My neck aches differently than just a usual ache. It spasms a lot and my cervical spine burns at times. The back of my head feels like someone hit me there hard. The pains are manageable, but the pressure can get unbearable. I feel very uncomfortable in the base of my skull, and it often radiates pains up into my temples. Sometimes I get shooting pains through my scalp. My eyes and sinuses bother me some, but these symptoms are pretty mild.

My upper cervical chiropractor, who I just started seeing a couple of weeks ago, told me that my atlas (C1) was misaligned in my x-rays and he is working to help me. He told me it will likely be at least a month til I start seeing some improvement. I really hope it helps. Thing is, we aren't really sure if my neck issues started due to TMJD or vice versa. It could go either way, which is why he recommended I also see a TMJ specialist for anything else I might need.

Do any of you also feel this way? I kept looking more into cervical spine issues, but tinnitus is so common with TMJD... and I would say that it's pretty significant. I used to have a pretty simple ringing in my ears but now additional tones are added in, sometimes like a strange song (and of course when I am trying to sleep). I was so used to it, but when it's getting worse, it like starting over with dealing with it. I look forward to my August appointment and until then have my chiro visits!

 
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Old 07-11-2012, 04:09 PM   #2
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Re: Head/neck/ears worse than jaw?

Hi there,

Quite like you, my worst symptoms were not the jaw. It got sore (especially until I went to a soft foods diet) but the real culprits were headaches, neck/shoulder pain, extreme tinnitus, hyperacusis. It took me a long time to get diagnosed with TMJD but once I did, I tried all the least invasive and impermanent treatments first - but got no help from them.

First I went to a traditional neuroumuscular dentist whose expensive protocol I followed to a tee - again with no help. He was at the point of encouraging me to get Botox when I decided to find someone else. I found a modern nm dentist who had done a lot post grad training and had an excellent track rate of helping folks and started functional orthotic (splint), followed by orthodontic treatment. It turns out my issue was a misaligned bite. The first few months of the splint were hellish but I started to see results and by the end of my treatment I was nearly pain free.

Things that really helped me were improving my clenching, seeing a great PT who specializes in TMJD (I saw a regular one that did more harm than good but once I saw a specializing one I started to see results), and also upper cervical chiro. Like you I had a misaligned atlas as well as uneven hips and shoulders. This is fairly common for folks with TMJD. It was really important for me to get straight and improve my posture - bad posture really triggers pain in the head and tinnitus for me. What might be important for you is seeing a PT who does orofacial trigger point releases. Over time, all the muscles in your head, shoulder, neck form knots that don't undo themselves. They can create a lot of pain and keep the tension in the area bound together in a type of muscle-knot constellation.

If I had any advice for you, it's to make sure you see an excellent TMJD specialist who has had training in modern nm treatments like functional orthodontics. They should have done a ton of post grad studies (hopefully at LVI global) and have successfully treated many others. I have seen so many stories of folks whose symptoms get worse from getting mis-treatments from dentists who are under-trained or don't have the right training. TMJD is really tricky to treat and you need to see someone who really knows their stuff!

Before starting any treatment, make sure you know exactly what the definitive cause of your TMJD is and ensure the treatment addresses it specifically. Do a ton of research on any docs or treatments before starting with them.

It's a tricky road to navigate but you can find your way out of the pain you're in. Hang in there and best of luck on the path ahead

Last edited by judye; 07-11-2012 at 04:11 PM.

 
Old 07-11-2012, 06:06 PM   #3
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Re: Head/neck/ears worse than jaw?

Thank you so much for your reply! I really appreciate you sharing your experience and advice. The specialist I'm seeing in August was given to me by recommendation, but for now it's just a consultation and exam. I will see how it goes and learn more about them to see if it's somewhere I'd like to continue going. I was considering invisalign because my teeth hit in the front from being a little too close, so my bite can certainly have some issues going on. I was hoping to wait due to the cost, but I suppose if it's causing all of these other issues too, I will make it work sooner.

I am very, very interested in the trigger point therapy, not only in this area, but in various spots that I have a tough time with. I had always wondered if I need to get them fixed and if I ignored them, if they would continue to stay there, even if I fixed the root cause. I never got a good answer on this, so your advice was very helpful. I'm going to start looking into my options for trigger point therapy in the TMJ area, but also want to look into it for my neck and shoulders.

Oh and did you need an MRI of your jaw? I had a brain MRI and cervical spine MRI recommended to me at some point, but was no longer seeing those doctors since they were the type to not really listen (and that was very frustrating when they just wanted to do an MRI and basically their plan was to give me a prescription and that's it!). They also just mentioned that they typically have ALL of their patients get them, so no major concern or reason for them. If my new doctors do still think this is necessary in my near future, I'd be interested in getting them all done at the same place.

Thanks again!

 
Old 07-11-2012, 07:04 PM   #4
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Re: Head/neck/ears worse than jaw?

You are very welcome! I remember all too well how confusing things were for me when I started this crazy TMJD journey. I hear you about the cost issue - it costs a ton to get the diagnostics done, never mind the treatments. I could really rant but suffice to say that one day the full picture of TMJD will be understood by traditional dentistry and the modern treatments will be covered...it's just a matter of time. I just wish it were sooner rather than later!

I never needed an MRI as it was very clear that my problems were caused by a bite issue. Bottom jaw was too low and too far back. Top teeth trapped the bottom jaw into that position. Much like yours, the top teeth hit down on the bottom. Because the bottom jaw was so low, there was no place for the top to rest (the top barely met the bottom) and this completely stressed out the jaw and surrounding muscles. I think MRI are used more frequently with TMJ joint issues so they can see exactly what's happening with and around the joint.

Well I'm into phase two, braces and sadly there were no options for invisalign or even clear braces. My dentist strongly felt that self-ligating metal brackets were the way to go...so full metal mouth it is for me!

Hope things go well with your upcoming appointment. Take care and let us know how it goes

 
Old 07-12-2012, 04:22 AM   #5
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Re: Head/neck/ears worse than jaw?

Hi tUrRrRa,

Wow looking at your first post I was thinking this sounds A LOT like me.

"It definitely clicks and pops often" - Yes my right tmj used to having grating sounds all the time. I started TMJD treatment about 2.5 months ago (I'm wearing a lower 24/7 orthotic that covers the bottom teeth). Now the grating sound is gone but I still have a small pop when I open my mouth. I'll be getting a new orthoic a couple of weeks time.

"I used to clench my teeth at night and could tell in the morning, but I don't do this anymore" - I used to clench so hard that I cracked one of my previous splints. Now because I'm much more aware of my facial muscles, I don't clench as much.

"My TMJ area gets more sore as the day goes on. It feels best in the morning" - YES! When I wake up in the morning it's probably at a level 1 or 2 on the pain scale. As the day goes along it usually builds up to about 7.

"I try to relax my jaw and keep my teeth parted, but I think I hold tension in this area" - Yes I try to keep my face and jaw as relaxed as I can. But the tension NEVER goes away.

"Do any of you feel that your worst symptoms are NOT in your jaw" - Yes, my symptoms are not IN the joint itself, but more like around the jaw area. Make a cusp with your hand and place it over the ear and you can see where most of my tension is. Then it sometimes will radiate up into the temporalis, or down to the top of the neck at the back.

"The pains are manageable, but the pressure can get unbearable" - Yes I get that strange pressure / numbness / tension / spasm that moves around. This is the symptom that bothers me the most. It really can get unbearable.

"I feel very uncomfortable in the base of my skull" - Yes I get that too, somewhere behind and below the ear.

"we aren't really sure if my neck issues started due to TMJD or vice versa" - I have the same question too.... Until today I still don't know what caused all this to turn my life upside down.

"Do any of you also feel this way? I kept looking more into cervical spine issues" - Yes I feel this way! But I started looking at TMJD issues first, and it was only beginning of this year I started looking into the cervical spine.

Sorry I know I'm not much help here because I'm still looking for the answer myself. But I just wanted to say that I can relate to a lot of things you're saying.

Quote:
Originally Posted by tUrRrRa View Post
My upper cervical chiropractor, who I just started seeing a couple of weeks ago, told me that my atlas (C1) was misaligned in my x-rays and he is working to help me.
How are you feeling after your adjustment? I'm actually looking into upper cervical chiropractics now so would love to know how you're doing. I certainly hope you are having some relief from it!

Take care and all the best!

Last edited by MissyJ; 07-12-2012 at 07:28 AM.

 
Old 07-13-2012, 01:34 PM   #6
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Re: Head/neck/ears worse than jaw?

joojube - Good luck with everything! I really hope you find good relief and lasting results after your braces. My chiropractor mentioned that he thinks my bite may be off just from looking at me and adjusting me, so we'll see what the TMJ specialist tells me later on. My jaw sure does feel "awkward" at times. If the bite is off, do you think it's common to feel discomfort even when the teeth are kept parted for much of the day? I somehow trained myself to not grind or clench at night and feel pretty good in the morning, with no jaw discomfort until I start my day. I even keep my mouth slightly open at times (even though it looks silly) to keep myself from clenching. I used to clench my teeth VERY often during the work day. I guess I need to look into my insurance to learn more about what I'll be responsible for. I was going to pay as I go if I were able to get invisalign to help with the cost, rather than paying upfront for the whole treatment. I'll be curious to hear what they tell me.

Missy - Wow, sounds like we are going through some very similar issues! I'm sorry that you are going through it as well, but hopefully we can get some answers and relief soon. My TMJ does hurt with pressure. The chiropractor/PT massaged the joint and I worried I'd start getting teary eyed. I remember a massage place telling me about their TMJ massage being painful for most people, which is why they recommended a very short appointment and gradually building up to relieving tension (but of course not fixing an underlying problem that a TMJ specialist would help with).

To be honest, the cervical adjustments haven't given me relief yet. It's been 3 weeks and they did tell me to expect it to be about a month before I start seeing some improvement. They also mentioned that I might really see improvement if a TMJ specialist determines that I need a splint or something that the chiro can't do. I do like going and I notice changes (just not going away yet), so I can tell that things are in progress. I like the blended approach with physical therapy. It's been pretty comfortable going, but he's able to easily find those tender spots. I think today's appointment went pretty well. I actually felt a bit better today, but it's getting tougher as the day goes on (normal for me). Was that your post about the different methods of upper cervical? I remember seeing the thread but I'm actually not sure what method(s) my chiro uses. I'm still so new to learning about chiropractic treatment.

Last edited by Administrator; 11-27-2013 at 02:31 AM.

 
Old 07-13-2012, 04:08 PM   #7
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Re: Head/neck/ears worse than jaw?

Hi again Turrrra,

Thanks for your well wishes with the braces - I appreciate it. Things have been tough going lately so I'm needing to keep my chin up these days. I've been through the ups and downs of nm treatment for over a year now so I know it's par for the course now at least.

To answer your question, I definitely think it's common to feel TMJD discomfort even if the mouth is open during the day. Optimal rest positioning of the mouth may help relax clenching muscles, but it doesn't necessarily relax TMJ issues. On this site, I have heard of people whose TMJ issues are exacerbated by an open mouth positioning and I have also heard of people whose TMJ issues are exacerbated by a closed mouth positioning. Then there are people whose issues are exacerbated either way. I think it depends on your specific TM joint issues as well as the specific muscular issues you've developed due to them. Also, once trigger points get activated, they are in play even if you relax your muscles (such as with Tensing). Tensing can help the muscles relax and while it may decrease pain, it doesn't get rid of the trigger points and their effects entirely. So overall, when you open your mouth, you may be relaxing the clenching muscles and prevening clenching action, but not necessarily alleviating TMJD and trigger point pain.

I was wondering how open you hold your mouth...if you are holding it open enough that you feel you look silly, this sounds to me like it is more open than the optimal position for relaxation. A normal, relaxed or rest position of the mouth would should have the lips together (or just slightly parted), and teeth slightly parted instead of touching. The tongue would rest behind the front teeth--usually on the palate tissue just behind the upper teeth (in some cases, behind the lower teeth but this is less common). If you are opening your mouth to the point that people would think, "What's up with her?", that could actually be stressing out your TMJ/bite issues. Even one finger of opening, for me, increases pain and exacerbates tinnitus.

By the way, you've inspired me to watch my daytime jaw activity more closely and try to train it to relax more, so thanks for that!

Well I'm really hoping your specialist appointment sheds some light on all this. Please remember that there are different types of specialist - traditional ones do not believe bite issues are a cause of TMJD and if you see one of these (like I did) and you have a bite issue, their treatments may be of no use. Even among the more modern nm dentists, treatment practice and education is not standardized so if you don't see someone with the right training and experience, you could end up with empty pockets and worsened symptoms. Yikes I've spent too long reading people's horror stories on these sites! It's way too common to end up worse off and the key to success here is finding a stellar modern nm dentist. To do this you need several recommendations for the same dentist, you need to make sure they have the right education, training and equipment as well as a history of successful TMJD treatment with many patients.

Anyhow great that you are getting good specialized physio and chiro help - so many people with TMJD miss this and this can affect the course of their splint treatments, etc. Plus, if you have muscular TMJD, it can help resolve the issue entirely.

Let us know how things go! Hoping for the best for you,

Joojube

 
Old 07-14-2012, 04:48 AM   #8
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Re: Head/neck/ears worse than jaw?

Quote:
Originally Posted by tUrRrRa View Post
Was that your post about the different methods of upper cervical? I remember seeing the thread but I'm actually not sure what method(s) my chiro uses. I'm still so new to learning about chiropractic treatment.
Hey tUrRrRa,

Yep, it was me who started a thread asking about different techniques to adjust the upper cervical. I started reading about the upper cervical a couple months back and I found that there are so many different techniques to do the adjustment. Make a search with the keywords 'upper cervical spine' and you'll get lots of useful information.

I've been reading a lot on forums and support groups and found that it is common for someone with TMJD to have issues with the cervical spine as well, specifically C1 and C2. So besides TMJD treatment they also go for other treatments such as upper cervical chiropractics and physical therapy. So I hope when you go into TMJD treatment you'll get the relief you're looking for. I'm in TMJD treatment now (approx 2.5 months), but I'm having trouble finding someone nearby who can do C1 adjustments.

So for your atlas adjustments, did the chiro take specific x-rays to show you how your atlas was twisted? Maybe when you go in the next time perhaps you could just ask what technique he is using, I'm curious....

 
Old 07-14-2012, 11:19 AM   #9
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Re: Head/neck/ears worse than jaw?

This is all so interesting. I feel the same way with my symptoms as you all do. I tried chiropractic treatments, but they did nothing for me. Lately, my TMJD had been really bad. The jaw itself not so much, but in front of the ear, behind it, etc. so painful. Wearing glasses hurts, but my contacts annoy me as well. Talking on the phone is brutal. Chewing? Well, I am used to eating soft foods. Heat on my ear feels good, but not always an option.

I just wanted you to know I know how you all feel. I do hope you can find some relief.

 
Old 07-14-2012, 11:20 AM   #10
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Re: Head/neck/ears worse than jaw?

Also, when my sinuses are inflammed, my TMJ is worse, is that common for you all as well?

 
Old 07-14-2012, 05:12 PM   #11
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Re: Head/neck/ears worse than jaw?

Missy - I can definitely ask him about the method. Yes, they did take special x-rays to see how the C1 was misaligned. They seem to do some regular adjustments and for my C1, they use a device that taps up on the left side, which is what my specific treatment was per what my x-rays showed. It's hard to say if I actually have a TMJ problem or if I need to learn to not hold stress and tension there. I know that I used to clench my jaw a lot and I think I still manage to do this, even when I keep my teeth parted. It might be something behavioral that I need to learn to fix. I will be interested in what the TMJ specialist tells me though. I do think my bite could use some improvement. My regular dentist had told me I'd be a good candidate for invisalign. I talked to him about how my front teeth hit (the back of my top front teeth touch the front of my lower front teeth, so the bottom teeth have some minor chipping on the front at the top). I know this is an issue, but of course I'd have to talk to the specialist to see how my jaw is positioned.

I just got a trigger point massage and TMJ massage and was surprised how jumpy my muscles are. Although my neck bothers me the most, the trigger points where the worst in my shoulders. The TMJ part was also uncomfortable, but I think it'll be helpful for the tension I hold there. I would actually like to get these more often and see if it helps. It would be wonderful if a lot of my problems were caused by nasty muscle knots that were aggravating everything around them.

tmrots - Did you specifically go to an upper cervical chiropractor or a regular one? I didn't realize how many chiros do neck adjustments, but not specifically upper cervical. Unfortunately I do not think I will be getting relief from that alone, but I do want to continue going since my C1 was off, at least to be aligned. I think the pains will still be there, but hopefully the chiro will at least help my neurological symptoms. I'm hoping that a combined treatment of adjustments (both regular and upper cervical), physical therapy, massage/trigger point therapy, lifestyle changes, AND seeing the TMJ specialist will help. I really wish it were easier and one person can help, but it seems like that just usually isn't the case. I do hope that you start getting relief too! And yes, I definitely notice that my sinuses act up and it all seems to connect. I can feel them draining at times too, although they don't seem to hurt and it's more of a pressure issue.

Hope you all have a good weekend... and hopefully not too much discomfort either!

Last edited by Administrator; 11-27-2013 at 02:32 AM.

 
Old 07-19-2012, 09:23 PM   #12
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Re: Head/neck/ears worse than jaw?

I know this sounds silly (well maybe not to those of you who struggle with jaw discomfort), but I've been trying different expressions to see how my jaw feels the most comfortable. I seem to feel best when smiling! The more I try to relax my jaw, the worse it seems to get... or so it seems at least today. Obviously I can't smile non-stop, but I guess I might have been trying TOO hard to relax my jaw. Thought it was interesting! My chiropractor actually suggested I hold off on my appointments until I talk to the TMJ specialist. He said it would make the most sense to see what they say and work together rather than possibly waste time and money if my treatment requires a splint or other orthodontic treatment. Curious to see what will happen! In the meantime, I think I'll use that saved money to go for regular massages.

 
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