Tinnitus, TMJ, Headaches, Neck Pain, Facial Pain, etc. — Possible Treatment

[Codaz]

So I came back yesterday from my second visit to the ACTA in Amsterdam. Said to be specialised in orofacial disorders in my opinion. Turns out it was after all a big dissapointment. And a very expensive one too.

They first invite you with 150 and then later 180 questions about TMJ, head-aches and such but do only little with that information in my opinion. Just some small notes and that's it. You are seen by the assistant of the assistant (in my opinion someone with a beginners to medium level of knowledge), a dentist-gnathologist in training. Which all have a tutor or professor. Let me be clear that everyone has to learn its job but why let patients pay for the professor if you never see him?

Every patient is discussed in class as they are a big education institute in dental care. There are dozens and dozens of dental chairs on every floor. The orofacial disfunction department is very small, only four chairs. What suprised me is that there are multiple patients with the same disorders (like the headaches and facial pain I have), and almost all of them get a bite splint. It's weird to see patients who are suffering the same things as you have.

Drugs were not prescribed, as there is no indication that this will help (to me) they said. This was a very big dissapointment. So even the drugs that were e-mailed to me by Dr. De Ridder are not given to me. I discussed these muscle relaxants and they said no.

They say you very soon get used to them and therefore you have to taper up to maintain the effect. The only time the drugs are prescribed is if you cannot open your mouth as muscles are too tight. Otherwise not.

They just discussed the results of the intake and nothing more. They told me they have an inhouse TMJ physiotherapist which might have some new tricks or techniques but it's not worth the time and money to travel to Amsterdam for some things I can do at my own TMJ specialists. They also suggested to get a new splint as it shows bite marks and does not adhere perfectly to the upper and lower teeth.

The thing @carlover mentioned of a soft bite splint was immediately dismissed as they said that a soft splint is worse than a hard one as you can still grind your teeth. Research I have read myself said the opposite.....

For the rest they told me no promises on improvement as clenching / griding is also a psychological thing (stress), this is known by all of us. Apply heat and when the pain is too severe just wait until it's over. They gave no more advice.

So if you have any TMJ complaints my advice is to avoid the place and just get a bite splint from your dentist / dental surgeon and start with TMJ Physio immediately. So far the best solution (for me).

I'm looking into contacting other options but for now it's back to physio as it is the only thing to help.

 

[Onnie]

I am very sorry hear it was such a disappointment. I must say i have have the same experience with academic hospitals.

 

[Codaz]

I am very sorry hear it was such a disappointment. I must say i have have the same experience with academic hospitals.

Onnie, thanks for the support. Its better to warn people here other than that they waste their time going the same route as I did. TT is a community, so I learn from others. It's very important that we all share the steps here so we find either a partial solution or the steps to avoid, to have more time with friends.

 

[applewine]

I've been in contact with Ceres Nanoscience and they have informed by that they believe by December 2016 they should have the antigen panel test for Bartonella and Babessia available. It will probably have Borrelia as well, though I've already used the first version of this test and tested negative for that.

The reason I think these tests are relevant is because people with chronic muscular pain problems could be chronically infected with one of these pathogens. These musclar syndromes that result can result in tinnitus due to the interplay of nerves. Pathogens can also directly effect nerves.

The reason I'm interested in this particular test is because it is highly sensitive and specific. It looks for antigens using a new nano-trap technology. That allows antigens for the first time to be tested for. Antigens are important for pathogen testing because they are what the infectious organism sheds. This is the best thing to test for to determine if you are infected with something because it is not dependent on the hosts immune response, which can vary by individual resulting in false positive or negative results as well as not provide any indication of when the infection has been eradicated if that is attempted. These tests are also done at the genus level, while most antibody tests only test for a few species in a family of bacteria, which can mis a lot. Antigens are also very numerous in count whereas I've been told PCR DNA tests need a single bacteria, but each bacteria sheds many antigens. That makes antigen testing very sensitive to chronic low grade infections which could cause chronic syndromes rather than life threatening deadly attacks.

I suggest everyone look into getting this test down toward the end of next year when it becomes available. I think you may be able to ship specimins internationally, though I'm not sure.

I the meantime I'm getting close rot taking the best Bartonella test that is available without antigens. It is an enhanced PCR DNA test offered by Galaxy Diagnostics. It tests at the genus level, enhances the count using a culture and also relies on three blood draws within 8 days in order to provide a 90% chance of catching the organism while it is in the blood supply if it is present. That still isn't super high, but I would suspect there is less than 1% chance of the test working if you don't do those three things, which is what is normally done with Bartonella PCR tests.

 

[John G]

Hi everyone,

Has anybody here had a physical injury that may have caused these problems?. I had a bad fall when I was a kid, smacked my head and blacked out.I think that fall has caused my tmj,tinnitus. I fell when I was around 15 yrs old...I am 44 now. I was thinking about going to a guy that does "cranial adjusting" . I am not sure if he is any good , because I can't really find much info about his procedure. I will post his website when I get home... maybe someone here could maybe find some info on his procedure.

I just don't want to start throwing money around that I don't really have lol

 

[Mike Lee]

Try the Thera Cane to work out trigger points in the neck and shoulders. I used just a regular aluminum cane with a rubberized end and an extra wide opening on top and could work my shoulders back and neck effectively and break up spasmed muscles that had been bothering me for 10 months. I found at a goodwill for $5 now will invest in the real deal. search for trigger point therapy cane and see all the different makes and models. The S shaped unit looks interesting.

 

[VinceM]

I have been reading tinnitustalk for about a year now, trying different methods, techniques to reduce my T. Thank you all for these posts! Here's my posts. Perhaps I can help someone else. Perhaps someone can refine and correct my techniques, too! Here goes...

My pulsing T stared in 2008. I didn't know what "it" was. I thought there were sounds 'outside the house', such as traffic noises, or the hum of the roof fan at night. The T progressed to loud ringing with pulsing T, years later.
I have tried different diets. supplements, and finally Chiro. Tea (with caffeine) in moderation seems to help -- which is odd, because I have heard that caffeine is contraindicated. High cocoa (bitter) chocolate, in small amounts seems to help. Again, some folks contraindicate chocolate.

Today was the first time I tried chiro for my T. Today, a C1 manipulation helped reduce my T The Dr said that I was locked-up at C1 (there was a big crack at C1 !) I had little lock at C2. The Dr did not mention or manipulate C3. It is important to note that I also take a B12 supplement, along with a calcium magnesium (calcuim citrate, magnesium citrate, magnesium oxide, and D2, and a separate fish oil geltab. I drink Fiji water, which is high in minerals. I reduce salt to almost a no-salt diet. Table salt almost immediately amplifies my T. I can say that the combination of these techniques help to lower, but not eliminate the perception of my T. The T is still there, just more tolerable. High protein, low breakfast of egg whites and quinoa seems to help. Let's see how long the C1 stays fixed! I started with pulsing T in 2008... but I didn't know it was T! I thought there were sounds 'outside the house'. During the next 3 years or so, the T started to ring in many frequencies, in addition to pulsing. I have experimented with sound therapy, as well. I created my own wave files with frequencies tuned to what I perceive the T to be. Then, I apply wah-wah and Paul-Stretch to the tones. Seems to help temporarily--- but I have not tried scientific tests to these experiments. I was just messing around with sound therapy.

I am interesting in learning how to correct my methods, and learn more! If I can help someone along the way -- all the better.

If anyone is interested in trying this (or correcting/improving my diet, or approaches, please comment!)

 

[StarSeven]

Hi Everyone, I am new here and really should post in the new section first, but somehow wound up here. I look forward to reading much or all of this section. For now i want to say thank you ALL for posting and hope to come back with comments.
I have had many of these things on my own mind and I can't tell you what a miracle it seems, to find so much of the leg work in place... or at least so many people wondering and experimenting along the same lines. I am also looking forward to contributing my own observations as well.

best, Star

 

[Codaz]

So I have found another major influence of my T. And I am still trying to investigate how to influence it.
Long story short: it's the neck muscles and C1 / C2 / C3. This is what I expected for some time already, but if I nod, and stretch those muscle's my facial pain differs and off course the T. That becomes much lower. I definately am going to pick up some extra excersizes to work on that neck.

I have a new manual therapist who started working with me on the neck last thursday. For now once a month but maybe more. Thing is, there is so much muscles, nerves and vertebra's involved it's confusing...

 

[applewine]

@Codaz, do you have any lower back pain? I do, especially on the right side, which is the same side my tinnitus is on and the side of my jaw muscles that normally hurt, among others.

I believe the superficial spinal muscles are sending that dysfunction up there. You can feel them in the mound in the middle of your back when standing up. The deep ones are the ones between the mound and the spine, if you were feeling pain there.

@Mr. Cartman I'm planning on getting some blood work soon to test me for Bartonella infection. I believe I already told you about this test. It is only offered by Galaxy Diagnostics. It is the ePCR triple draw test including antibody.

Bartonella infections of course can cause chronic muscle pain. They infect the blood cells/capilaries small arteries or whatever in humans. I get cold wet water sensations, which could very easily be micro vascular related and is either the direct cause of the sensation or may be effecting the blood supply to nerves.

I then plan toward the end of the year to get an ever better test when it finally becomes available which will be the nano-trap antigen test for Bartonella (which will also include Babesia) which will be offered by ceres nano.

I'm fairly sure anyone outside the USA can get these tests as well as the samples would just need to be cold preserved in a way to be sent to the labs here. This other test is offered by Ceres Nanoscience.

I already got the Ceres Nanoscience antigen test for Borrelia, which was negative, so I'm not looking into that anymore. They told me that by the end of 2016 they should have the same test expanded to include the Bartonella and Babesia.

 

[just1morething]

I am looking into TMJ disorders once again as a potential cause of my tinnitus. I don't have pain, but considerable crunchiness and crepitus in my left TMJ. Maybe it will lead nowhere like last time? I didn't have much luck with a TMJD appliance in the past, but maybe surgery is needed?


Temporomandibular Joint Disorder
Another example of somatic tinnitus is that caused by temperomandibular joint disorder.
The temporomandibular joint (TMJ) is where the lower jaw connects to the skull, and is
located in front of the ears. Damage to the muscles, ligaments, or cartilage in the TMJ can
lead to tinnitus symptoms. The TMJ is adjacent to the auditory system and shares some
ligaments and nerve connections with structures in the middle ear.
Tinnitus patients with a TMJ disorder will experience pain in the face and/or jaw, limited
ability to move the jaw, and regular popping sounds while chewing or talking. A dentist,
craniofacial surgeon, or other oral health professional can appropriately diagnose and
often fix TMJ issues. In many scenarios, fixing the TMJ disorder will alleviate tinnitus
symptoms.

 

[Jahhsoul]

Hi guys, I usually have 3 T (Worst is hig-pitched in bot ears, then is a very faint irregular "wind" only in my right ear, and finally a very very faint medium pitched). I have bruxism and clicks in my jaw.

Last night I forgot use my dental Split, and this morning my very faint irregular wind in right ear was x4 stronger, and my other 2 T were exactly the same. I should do the "experiment" more days to make sure it is related but dont want to do it today.

Someone have experienced this too?

 

[just1morething]

Hi guys, I usually have 3 T (Worst is hig-pitched in bot ears, then is a very faint irregular "wind" only in my right ear, and finally a very very faint medium pitched). I have bruxism and clicks in my jaw.

Last night I forgot use my dental Split, and this morning my very faint irregular wind in right ear was x4 stronger, and my other 2 T were exactly the same. I should do the "experiment" more days to make sure it is related but dont want to do it today.

Someone have experienced this too?

I would continue to use your splint as mentioned in above post as it can contribute to your tinnitus, and if you happen to have sleep apnea and/or snoring it will keep your airway open. My ENT said yesterday to avoid making your jaw crunch as that can cause further damage to your TMJ cartilage and that surgery is really not a option. My splint or mouthpiece was custom made and has interchangeable bands. It looks like this:

 

[Mr. Cartman]

@applewine @Codaz

Hi guys!

I hope you are doing alright!

Even though I havent been very active on the forum lately, I have read all of your posts with great interest.

I would also like to thank both of you for the priceless information you guys have provided in your posts.
Please keep up the great work!

@applewine

I think your approach is very interesting. I would also love to hear how your bartonella test turns out.
In my case, I think you are spot on regarding the back and how it all ends up in the neck.

I dont know if the jaw component to this is a direct cause of what happens in the back, neck and/or head, or if it is something that has evolved because of severe stress and is unrelated to the above.

@Codaz

Thanks for the information in your above post, and all of your previous posts. I have pretty much concluded that those muscles are a part of this as well.

I will comment more on this a little later

 

[naggy]

@applewine @Codaz

Hi guys!

I hope you are doing alright!

Even though I havent been very active on the forum lately, I have read all of your posts with great interest.

I would also like to thank both of you for the priceless information you guys have provided in your posts.
Please keep up the great work!

@applewine

I think your approach is very interesting. I would also love to hear how your bartonella test turns out.
In my case, I think you are spot on regarding the back and how it all ends up in the neck.

I dont know if the jaw component to this is a direct cause of what happens in the back, neck and/or head, or if it is something that has evolved because of severe stress and is unrelated to the above.

@Codaz

Thanks for the information in your above post, and all of your previous posts. I have pretty much concluded that those muscles are a part of this as well.

I will comment more on this a little later

I suffer from very similar symptoms, I also have TIGHT neck and shoulder on the left side (my face pain is on the left)

I read with interest your massages around the infraorbital area which is my most achy one!

I do not have trigeminal neuralgia as my pain is constant and jumps around without any electric shocks (I thank heavens for that!) plus I had two MRIs which show nothing out of the ordinary in the brain. My brain is fine!

I am 70% sure my issues must be muscular

have you found any improvement?

 

[Mr. Cartman]

Hi @naggy

Yes, I have found improvement, but unfortunately I have also found that this is a very slow process.
I dont think too much of exactly what muscles are causing what anymore, but rather how it all became this bad. My masseter is so damn tight, along with the muscles in my neck, both anterior and posterior, not to talk about the muscles in my head and around my ears.

This is sort of a list of what I have found to play a part of this nasty muscle dysfunction:

1. Bad posture.
2. Teeth grinding (seems to be connected to #1 and #4).
3. Eye strain.
4. Stress.
5. Shoulder shrugging / elevation of shoulders (seems to be connected to #1 and #4).
6. Unconscious contraction of my jaw muscles (seems to be connectoed to #4).

- Poor posture is bad. It causes my shoulders to collapse towards eachother, strains the posterior neck, and weakens the anterior part of it. The occipital nerves and arteries are especially at risk posterior, and the auricular- and supraclavicular nerve at the clavicle / sternum area. Trapezius is not doing good.

- Teeth grinding. I have found that this will in time strain the jaw muscles so bad that it is pretty much unbelievable. Especially the masseter, temporalis and the medial pterygoid and will cause a severe muscle imbalance between the jaw suppressors and the jaw depressors.

- Eye strain seems to pretty much strain the supra- and infraorbital muscles a lot, along with temporalis and occipitofrontalis, and leaves the orbital nerves at risk of compression / inflammation. Especially at the eyebrows, between the eyebrows and infraorbital regions. Also lateral to the eyes, branches of both the facial nerve and the trigeminal nerve are found in this area. I find the auriculotemporal nerve to be of interest as well in this area.

- I have found that stress causes me to elevate the shoulders, and strain the anterior portion of the neck, all the way from my shoulders to the hyoid and anterior neck muscles (scalenes, levator scapula, SCM etc.) and the jaw depressors. digastric etc. - and tensor veli palatini (that tenses the soft palate).

The above is all simplified though.

I hope you will find some of this information useful

 

[just1morething]

The above is all simplified though.

Yeah, right. Did you get my PM?

 

[Mr. Cartman]

Yeah, right. Did you get my PM?

Yeah, I just sent one back!!

 

[Codaz]

I'm so sick and tired of this recurring facial pain around my jaw but also in the upper right side of my head. Last friday I visited my TMJ specialist and had some good days of 90% gone T, but now some facial pain again. Haven't had this for months. Definately will need to get more than just therapy for this.

 

[applewine]

@Mr. Cartman and others, it has been a while since I've posted anything. Recently I've been focusing on trigger points in what I believe are my abdominal muscles.

I've been aware of problems in this area for years. My bad TMJ side is my right side which is the side with the louder tinnitus as well. Well, on my right abdominal side near my bottom ribs for years on and off to various extends and variations I've had a spot there that will either go numb or itch or sometimes feel pain. In more recent years after learning about trigger points and some of the deeper muscles like the psoas I started poking around there in deeper areas.

In doing so perhaps a few years back I discovered that I have a vertical line a few inches deep into my abdomen that when pressed definitely causes the lower back pain I feel. This vertical line is maybe 2-3 inches from the center of the belly button. For a long time I thought this was some part of the psoas muscle since that muscle connects to the back. A trigger point specialist assured me that I was not palpating my psoas muscle though didn't say what I may be pressing.

Well today I started thinking about it some more and did some googling and found a video:


He mentions abdominal muscles causing back pain. In the past I was focusing on whether they were external obliques, but it could actually be internal or even something else and which may not even matter.

I went back to my Trigger Point Therapy Workbook by Clair Davies and on page 174-175 it does talk about abdominal muscles and back pain.

I've tried pressing on these muscles before though and have never been able to get them to release or do anything positive. I can just feel the referred pain pattern get triggered to likely confirm they are triggering the back pain.

The way this could connect to TMJ pain is that these abdominal muscles could be causing the back pain and then the back/hip pain may be leading to the upper back or mandibular pain. That seems like a pretty long chain of events, but who knows. I've always been suspicious that any trigger points alone could be causing so many trigger points in me and thought it must be some kind of underlying infection or condition, especially since I had the neurological symptoms in the past. Though, the more recent neurological symptoms could have been caused by the very careless antibiotic treatment I tried from a very unscientific "lyme doctor".

Either way you guys may want to check out your abdominal muscles. Press deep about where I said. Also, if you lift your legs off the ground while laying on your back as the tests say to do I can't keep pressing because my abdominal muscles on the surface will push my hands out of my abdomen from the deep place that was hurting. This means I can't do the test.

I also know around the time this started for me in college with the neck pain I was doing among other things the so called bicycle crunches for my abs. I looked this up and it does work obliques and things like that twisting are examples of what can cause trigger points in them. Other causes are chronic coughing as you might have had during a long upper respiratory infection, or from vomiting a lot if you got food poisoning for example. This is a twisting and lifting the legs up. I would never do that now, but I didn't know much back then.

 

[Codaz]

Thanks for the info @applewine will try later. To me more excersize is neccesarily bad for us.
So after I'll finish my study (I hope this year) I'm focussing full force on becoming more fit. Because there is some truth in the theory of if you are more fit, your head is more fit as well. Otherwise it might work as a distraction from T. But what really is striking me is that they cannot or will not measure our nerves. Is there really no such device that can put a tiny piece of volts onto our nerves to check whether or not they are in trouble or aggrevate our T? If it is from the trigemenus nerve I would like to know, since that can (hopefully) be treated. Most problems in the trigemenus nerve are from one of the 3 branches. If it's not coming from that point, at least I have ruled it out.

 

[Codaz]

So finally an Israeli university has come up with a medical tattoo that can measure nerve activity. Hope to see this very soon so facial nerve pain can be detected and measured.

 

[Codaz]

So finally an Israeli university has come up with a medical tattoo that can measure nerve activity. Hope to see this very soon so facial nerve pain can be detected and measured.

Now with image

 

[Codaz]

@Mr. Cartman

I don't know if you are able to watch surgery images but I found a video about facial pain which indicates T as a preocupation for surgery with Jannetta. You mentioned this in 2015. I said than that my facial pain was gone for the most part but I still to this day want someone to examine it. So I started viewing some Dutch Youtube video's on orofacial pain. Long story short some video's are 45 mins about changing your lifestyle to a more positive one, reducing stress etc etc. Others are about the gamma knife and/or jannetta surgery. I turned my face away when I saw these images in the Youtube video but it's quite interesting. If you don't understand Dutch you might translate something.

30 min 43 indicates Tinnitus

 

[applewine]

@Mr. Cartman @Codaz Recently I've been paying more attention to the pain in the muscle inside the bottom of my jaw. Years ago when the pain started this muscle hurt a lot more. This isn't the first time I've thought about the digastric muscle anterior belly and digastric muscle posterior belly.

I and others seem to complain of a pain in the front of the neck and we are not just talking about the SCM. We are talking about a pain that seems to be coming much closer to where the carotid artery is. I try not to press to hard or too long there because I can feel a pulse. I have just pressed for a moment to find the pain.

I was also looking into Eagle Syndrome, which I believe Mr. Cartman or others and myself looked at years ago. That is a disorder of the styloid process. It gets too long and they cut it off, but people seem to get that done and no results. The muscle that attaches to that is the stylohoid muscle. I don't know if that could also be involved but if you look at a picture you can see they all look like they hold the hyoid bone in place in your throat like some floating bone, so I mention the stylohyoid muscle too just in case.

I've pressed on the anterior belly of the digastric muscle trying to relieve pain many times for years without any results. I have pressed less on the posterior belly where is in the neck.

This video talks about the posterior belly of the digastric muscle (in the neck)


This picture shows the muscles of the area well:

This may also be helpful:


And maybe this:

 

[Mr. Cartman]

@applewine , @Codaz

Hi guys!!

Thanks for all the great information!

I havent been too much online lately, but Ive been seeing a great neurosurgeon, had a couple more CTs, one with contrast for the neck and throat, and Ive seen a jaw surgeon that has actually perfomed surgically resection of the styloid process on many people (that were claimed to have Eagle syndrome). In 100% of the cases, the surgery had no effect. They did a 3D reconstruct of my styloid and I got to see the images. The resolution was surprisingly good (nothing compared to the regular MRI and CT images I have seen before). He did not think the styloid was the problem, but he did think it was a muscular issue.

I have found that there is something in my neck (mostly at the side of it - kinda below my ear) that has a direct correlation to my tinnitus. And as you pointed out @applewine, it seems to be either the digastric or the SCM.

I am 99% sure that its either one of them or a muscle that is located very close to one of them.

What I would like to know is why those muscles cramp up.. It has to be something I do on a daily basis.
Posture, eye strain, stress, compression of the neck, contraction of jaw muscles.. I dont know..

Thanks for the videos @applewine, Ill watch them now

@Codaz, I did watch the video, but I have a hard time to understand what they are talking about..

 

[Mr. Cartman]

@applewine

Also.. In some research papers I read (posted in this thread somewhere), they found that people with somatic tinnitus had increased tension in the digastric.. Yes..

 

[Dana]

What I would like to know is why those muscles cramp up.. It has to be something I do on a daily basis.
Posture, eye strain, stress, compression of the neck, contraction of jaw muscles.. I dont know..

I would like to know the cause too.

 

[applewine]

@Mr. Cartman There is one reason the digastric can be framed up that I know of. After I did a search for those videos I searched for another term and found a PDF paper.

I'm not saying this is the reason, but it mentioned that the digastric assists other muscles like maybe I remember it saying the lateral pterygoid but digastric is not very strong and gets overworked if it has to assist too much.

It mentioned a type 2 malocclusion as the cause which is basically mandible too far backwards. That gets into the whole TMJ bite discussion and I believe our bites are not recognized as far enough backward to be type 2 malocclusion.

Also supposedly with trigger points you don't have to do something wrong every day, the trigger point can perpetuate itself due to feedback loop.

Also if you press on the digastric posterior correctly it should be higher above the pulse or mostly. I feel pain pressing there. Seems to be right side only, tinnitus side, though my other face, jaw, neck does get symptoms too.

 

[Steve]

I've kept an eye on this thread as I have a direct link through muscular issues to my tinnitus. There is a lot of good stuff here, we could almost do with a summary of the best material.

What I would like to know is why those muscles cramp up.. It has to be something I do on a daily basis.
Posture, eye strain, stress, compression of the neck, contraction of jaw muscles.. I dont know..

I feel there is a posture link but also maybe because I have wider shoulder bones so my trapezius are more difficult to build up - I often wonder if that means there is an inherent weakness in this area that causes the strain.

It may fit with what you just said @applewine - if the neck region isn't providing a good enough supportive role then this could cause strain. I do get headaches related to this, especially when overworking shoulder muscles I feel it in the digastric area.