Waxing and Waning of TMJ Tinnitus

Hi Everyone,

So as I approach my six-month milestone of having had constant, persistent Tinnitus, I reflect on my journey thus far and thought I would ask for thoughts on any of you who are suffering from TMJ-caused Tinnitus.

1. Back in November '14, a week after my Tinnitus started, I was diagnosed immediately by an ENT at Mass Eye & Ear Infirmary in Boston with having Tinnitus "caused by TMJ." She was adamant about her diagnosis, even when I challenged that it seemed to have come out of the blue. She concluded that it would "get better with time, but ultimately, will wax and wane." That phrase really stuck with me.
   
   
2. In denial for several months, I explored numerous avenues - did Brain MRI, Brain MRA, Chest and Abdominal CT Scans, all of which returned perfectly normal. I even focused on Eustachian Tube Dysfunction as a potential cause, after trying @engineerLA's highly-successful anti-inflammatory protocol, but the effects were really incremental and short-lived. Finally in January, I experienced a breakthrough -- Prednisone caused my Tinnitus to disappear entirely. The effect was short-lived, but it proved to me that inflammation was at the root cause of my Tinnitus.
   
   
3. Throughout January and February, I experimented with a number of anti-inflammatory routines and procedures, and started to notice habituation beginning to kick-in. I could focus past the Tinnitus, no longer needed sleep aides at night, and could generally ignore it more and more for most of the day. But it is still there, all of the time.
   
   
4. Finally, on February 26, my dentist confirmed the TMJ diagnosis -- though qualified it by saying that "head, neck, and shoulder" muscles were likely to blame. It was a diagnosis that was backed up by my neurologist and my chiropractor, all of whom started to provide me with targeted physical therapy to improve my nightly sleep and reduce the intensity of Tinnitus.
   
   
5. Throughout March and April, I started wearing a custom orthotic (a night guard) to treat my clenching (not grinding) jaw, and started taking anti-spasmodic supplements (mostly magnesium, sometimes cat's claw). I've since noticed significant improvements in my tinnitus - but (no surprise) it has started to wax and wane. By this, I mean, that it seems like some days, the Tinnitus is barely there -- and it's almost gone for the entire day, around a 1/10 or 2/10. Other days, it's as loud as it's ever been, never lower than a 4/10 and often spiking to 7/10. This protocol has never caused the Tinnitus to totally disappear, however.

How many of you suffer from this sort of "waxing and waning" effect if you have TMJ-caused tinnitus? How has it been diagnosed, and what sort of treatment options have you explored? I'm going to be returning to my dentist, and I'm on the hunt for a really good TMJ specialist but -- just like ENT's who know about Tinnitus, the "TMJ specialist" racket is filled with pretenders who have no clue what they're doing, so it's a bit of a minefield. Any thoughts, perspectives, and opinions you may have would be greatly appreciated.

Thanks so much!

 

@Kaelon Hey there well as you know you and I are on similar journeys ....I had TMJ surgery which really helped with the TMJ but did nothing for my T. I now have Burning Mouth Syndrome which is also tough to deal with. I have been on countless Meds and really nothing works other then Klonopin. I refuse to take every day although doctor recommends it. So I too am searching for root cause . I do notice tho as time goes on that I have days where my T is not as intrusive as it once was but it could be habituation.....The battle continues
God Bless
Carlos

 

Hi @Carlos1,

Good to hear from you, my friend. So when you say that your T is not as intrusive as it once was, is it noticeably different? In my case, it's like night and day. Some days - for what reason, I really can't tell - the T is barely there. Other days, it appears to be full blast. I'd like to think there is some cause or consequence, but what my original ENT told me -- that it would wax and wane -- is definitely the best way to describe this strange, day-long series of "good days" vs. "bad days." At least the good days are outnumbering the bad days in my case.

What led you to get your surgery for the TMJ? And, is the reason you refuse to take Klonopin the side effects? What sort of side effects do you get?

Anti-spasmodics and muscle relaxants, they say, are the next best thing to steroids for us. In my case, I strongly suspect -- given t hat my dentist told me it's less with my jaw, and more with my head, neck, and shoulder muscles -- that life-long computer usage and poor posture combined with terrible sleep, are the instigators.

 

@Kaelon Well I had allot of pain in my jaw after the root canal I got an MRI took it to Mass General saw Dr. David Keith and he told me right away that I needed arthroscopic surgery that I had lots of scar tissue built up and inflammation so they did the procedure and injected a steroid and anti inflammatory Meds. My jaw is fine now but I too sit in front of a PC all day bad posture my left trap is always pins and needles along with my neck and its the side I also have my T.....Everything bothersome is on my left side.
Million dollar question for you if our T is related to muscles or skeletal issues do you think that we could benefit from a drug like Autooo63? T issues are so elusive and hard to understand.
In the past I have kept track of what I did or did not do to see if there was a relation to the T loudness and I just can't pin point it I gave up I was driving myself nuts trying to figure it out.

I don't want to take Klonopin everyday due to the dependency that comes with it. If I go 2 or 3 days without and then take 1mg at night I get a very restful sleep and next day a very quite T day that is the only thing that I found consistant.

 

Good information, @Carlos1. I went to see a maxillofacial surgeon, both at MGH in Boston and at Commonwealth Maxillofacial Surgical Associates in Cambridge, shortly after my first diagnosis by the ENT in November, and they both said that I had no musculoskeletal issues that could be attributed to TMJ in the classic sense. In many ways, that's what set me off on the wild goose chase. But it's clear to me -- given my jaw pain, and the growing unevenness of my bite -- that my jaw muscles are a factor here. Did Dr. Keith order your MRI, or did your dentist? What type of MRI did you have done, and how long did it last? I'm generally comfortable for up to 40 mins inside one of those MRI machines.

Re: your question, I do not think that AUT00063, or any other drugs that target the cochlea transtympanically, can actually help us, because our problem is neuromuscular conflict, not sensorineural hearing loss, which has a totally separate pathology. SSNHL is the largest cause of Tinnitus, so it makes sense that most of the scholarship is being done to target SSNHL right now, but I think it's largely useless for us. I've taken drugs that are supposed to quiet the central nervous system, include an anti-epileptic similar to trobalt, but I received no benefit. It was explained to me that though Tinnitus is -- always, unless if it's pulsatile -- a neurological manifestation of something else going on, unless if you target the root cause, the Tinnitus cannot be addressed. In our case, the root cause isn't with our auditory nerves misfiring due to incorrect stimulus -- it's muscular pressure moving our ear drums out of alignment and causing our auditory nerves to correctly re-callibrate, constantly. Muscle spasms are the most likely cause, I was told, but fixing these muscle spasms, because it's a chronic problem, can require many months of therapy.

 

@Kaelon My dentis ordered the MRI and they do it in stages they put in and remove popsicle sticks in your mouth to capture your mouth opening and closing it takes about an hour and yes its very uncomfortable.
So if our T is related to musculoskeletal issues you would think that a drug like Flexirol would quite our T then due to its muscle relaxing properties would it not? I have tried muscle relaxers too and I don't seem to get relief ....so frustrating at times.

 

Yes, @Carlos1, I think that muscle relaxants help TMJ-caused Tinnitus. It's no coincidence that hot showers help the volume of our Tinnitus -- it helps loosen and relax the muscles, so the tension becomes much lower and the spasms drop. I also know that if I take at least 500 mg of Magnesium, I receive benefits about 24 hours later with lower Tinnitus. Prednisone, additionally, offers the most relief because the anti-inflammatory properties target tissues, like muscles and the vasculature of the neck, head, shoulders, and jaws. I don't know much about Flexirol, but Baclofen has had considerable success at lower dosages for people with TMJ (though it takes a few days / week+ to kick in).

I have a follow up with my dentist next week (the one who ordered me to start wearing the night guard, which honestly, has helped quite a bit). I will ask him about an MRI.

 

Hi @erik - Yes. I had a standard audiogram conducted at Mass Eye & Ear back in November, and it showed minor hearing loss at the higher frequencies (exceeding 8500 Mhz), consistent with aging (I'm only 35, however). My ENT thought that the usual explanation -- that Tinnitus is generated by frequencies that the ear cannot hear -- is actually reversed in cases like mine, where TMJ is causing a frequency disturbance that masks sounds of a lower amplitude at that exact frequency. How about you?

 

@Kaelon

I don't know if you have facial pain but that is what my TMJ does to me. In very short: very very much facial pain days = high T. Days after TMJ physiotherapy: 3-4 days of 60-70% gone. The therapist wants to see now how much days she can postpone the next treatment. I barely make it 10 days to the next treatment. Was only 3 or 4. Depends a lot how stressfull my private life is.

I'm into my 11th month of weekly physical therapy for my neck and jaw therapy. Muscle tension can be quite misunderstood as you cannot feel it, but once the therapists starts his treatment you fly to the ceiling.
Muscles were totally misunderstood by me. Their function, tension and how bad posture only worsens the problem (we all sit too much in front of computers, or look too much down on our laptops which stresses the muscles too much).

After all this training my T is now enormously ups and downs. The facial pain is fierce, give me a pen and I trace you my pain exactly where I feel it.

The strange thing is that when my TMJ physio works on my face T becomes a totally different tone. Much lower than the 2800khz normally.

As much as I want the T to be gone, so needs to be the facial pain. Paracetamol does not help for that kind of pain. A neurologist I visited for that said he didn't knew what I was talking about and dismissed me.

The thing is that eventually I would like to try some drugs but not any that can erase the progress I have made through TMJ therapy, otherwise that would be a waste of money. I'm very hesistant.

Night guard is a must. If I see how many scratches and even pieces are removed by teeth grinding at night I'm glad that its just that piece of plastic that is worn and not my teeth.

 

@Codaz - That's very helpful, thank you for your story. I definitely don't understand muscle tension, but I do feel jaw aching and, from time to time, some facial pain, though honestly, I'd say it's more of an "ache" than a pain. Kind of like I've been chewing or using my jaws too much.

How did you go about finding a TMJ physiotherapist? My dentist has suggested I meet with a TMJ specialist, though honestly, they're a bit out of the way and I've done a lot of research and there appear to be TMJ "specialists" everywhere, with very mixed results.

Do any of you take high dosages of ibuprofen to help control the swelling and inflammation? Like 800 mg 3x a day with meals?

 

TMJ physiotherapy is a special type of physiotherapy, a lot of physiotherapists are not qualified.
My Dutch dental surgeon gave me a business card of the phyiotherapist's practice where they have two TMJ therapists. He requested me to start treatment right away, when he confirmed with an X-ray that I have retracted jaw muscles (TMJ).

Other types of TMJ related T is a disocated articular disc, but that's not the case with me.
Another possibility would be a neurinoma. Don't try to Google that or you won't sleep anymore, but that was dismissed as I don't have any hearing loss.

 

@Kaelon

I had been holding out some hope that my tinnitus was rooted in TMJ, but at this point it doesn't look like it.

Just got back earlier today from another appointment at a teaching hospital with a specialist in myofacial pain and TMJ. At this point, her opinion is that the facial/jaw related pain from which I'm suffering is rooted in the constant headaches I've been having for the past 4 months or so. She says she doesn't need to see me again unless the the myofacial/TMJ pain remains after to headaches are gone or much reduced in frequency/duration/intensity.

So, while I guess it's still theoretically possible that the T is rooted in TMJ-type issues, it's pretty unlikely for me.

I hope your waxing and waning tinnitus consists mostly of waning (if I'm reading that right!)

 

I almost have 1 year T. In the beginnen it whas real load. But now i have low days en loud days.
I did have 3 hearingtest bus i have no hearinglos. I saw a jaw surgeon and he said i have TMD. My jawmusscles are very tight, they are overloaed. I can manipulate the sound by moving my jaw. It make the sound way down. I somethimes feel pressure in my head, jaw, neck, schoulders.
I span unconsciously my jaws to.

When i take a shower i dont hear it but most of the time my T is low after a shower. I love to shower. I did see a
osteopath but did take a break, it cost a lof of money. But now at the moment my T still goes up and down but i can egnore it and i hope it stays like this.

My sound is not a real beeb but a ssshhhhh sound. In silent i sometimes hear a hum and a low beeb sound.

When i turn my head the sound gets louder. Even when i walk it sounds like i am walking in the snow. woosh woosh woosh on the ritme how i walk.

 

@Codaz where do you live. I am also from the netherlands en looking for a very good tmd specialist.

 

@Kaelon Until you get the MRI its tough to tell if the jaw issues are structural or muscle....My MRI showed arthritis in the TMJ and that the condle was pushed forward a little and as I said before lots of inflammation around the joint. Kaelon Dr Keith is one of the best surgeon's nationally in regards to TMJ issue's and he's in our back yard.

 

Hey @erik,

That's certainly true. Though, again, I can silence the T completely by taking prednisone. I can also silence my T entirely if I shift my lower jaw in the direction of the ear that I'd like to silence. I just look really goofy, and it's kind of painful to do it. If hearing loss were really the cause of my Tinnitus, neither of these approaches should provide me with total relief the way they do.

Are you able to change the amplification or pitch or your T by moving your jaw at all? This is usually a tell-tale sign that the Tinnitus is caused by TMJ. Also, generally speaking, Tinnitus is not multi-factorial: there is usually one underlying cause that creates the neurological phenomenon, it's just a very hard cause to pinpoint, if it ever can be pinpointed, and even then, very difficult to cure. TMJD is one of those rare circumstances where there are physical and surgical treatments that, in theory, can cure it.

 

Thanks, @LifesABeach. I'm sorry to hear that your Tinnitus doesn't appear to be caused by a TMJ dysfunction, but the one thing I've learned so far is that the head, neck, shoulder, and back/chest muscles are all deeply interconnected, and disturbance in one of them can cause spasms in another one, very far away from the source of the disturbance. So, facial/jaw related pain may not be directly your cause of Tinnitus, but it is certainly possible that it is aggravating muscles around your ears that is pulling your eardrum out of alignment and causing the Tinnitus (as is happening in my case). Have you seen a chiropractor? Are you able to manipulate your Tinnitus by doing any physical actions or taking any specific anti-inflammatory drugs?

 

Hi @sandra72 -- What you're describing is exactly how TMJ-caused Tinnitus works. I have a high-pitched whistle with a hiss that accompanies it. When it gets really bad, the high pitch is loud (sometimes, in a different tone) and the hiss grows louder. When it's very soft, the high pitch disappears and I just have a low-roaring hiss. I can manipulate this by taking hot showers, moving my lower jaw, and taking anti-inflammatory meds -- and I can even get total silence when I do these systematically, but it's generally pretty situational and short-lived.

What sort of treatments are you pursuing with your TMD? Have you gotten any scans or examinations, and has your jaw surgeon provided some basis for his diagnosis other than just a physical exam? My maxillofacial surgeon just took an X-ray and palpated my jaw (and it hurt like crazy) and he said that I had no skeletal problems other than minor wearing, but a lot of inflammation.

 

Great point, @Carlos1. I'm really nervous about surgery and don't really think that a surgical approach is right for me, especially since I have read (and you have indicated as such) that surgery of an underlying TMJ Disorder doesn't necessarily cure the Tinnitus. Most cases of TMJ-caused Tinnitus that has been cured, has been cured through physical therapy. Would seeing Dr. Keith provide me with proper options, including non-surgical ones?

I guess a trip to MGH is in my future.

 

@Kaelon Yeah he's a great doctor after seeing your MRI he'll explain all your options he's very thorough and he doesn't rush you at all. Prior to my surgery I did 6 months of physical therapy but it just didn't help my situation.
Good Luck Kaelon I wish you well

 

Thanks, @Carlos1! I guess I'm not even at the physical therapy part. I'm just at the "my dentist confirms what others have been saying, and he started me on the night guard 6 weeks ago and things are getting better" part. How do I go to the next step? Did you find a good TMJ specialist to provide you with physical therapy? I work in Somerville and commute along the Red Line, so I can be pretty mobile if there's a good candidate you would recommend. Thanks!

 

@Kaelon Well my journey started with the dentist he recommended the PT and the MRI once I realized the PT wasn't doing much for me I took the MRI to Dr David Keith. As far as a good PT I would ask Dr Keith who he recommends I got mine PT in the South Shore I live near Plymouth. I actually went to Southcoast Brain & Spine rehab Center in Dartmouth that's a ways away from you. Like I said Kaelon I'd let Dr. Keith Guide you he's really good.
Good Luck

 

Nice. Thanks, @Carlos1! I live on the South Shore, too! (Marshfield here.)

I've got an evaluation set up with Dr. Keith, though it's funny how his assistant insisted that he took a surgical approach first and foremost which, ultimately, isn't really where I'd like to jump to right away. I really need a thorough evaluation and some options, including PT, before I move towards a surgical solution. Do you think Dr. Keith is still the right person to see for this?

 

@Kaelon First time I saw Dr Keith he laid out all the possible routes to take and his first approach to me was PT I then told him I've had it for 6 months he then loaded up the MRI pics and went over the xrays with me and explained to me what I was feeling in the left side of my jaw. He also mentioned to me trigger point injections as a route to go but he said that really was for people that had issue's related to jaw muscle I had structural damage from my root canal and said surgery was the best option for me.
The TMJ surgery was in and out at MGH North in Danvers and I didn't even miss a day of work.

 

Excellent. Thanks, @Carlos1! I'll be seeing him in a few weeks at his Danvers office. I appreciate your guidance and referral!

 

@Kaelon Good Luck wish you well

 

Hi Kaelon, I've seen you mention prednisone here and there in a few posts. Did you have any adverse side effects from taking it? I have a 6 day prescription of prednisone that I haven't tried yet. I opted to try something natural first. (cat's claw) One week in and nothing so far. I know I shouldn't have done it, looking up possible side effects of prednisone. I know all of our bodies are similar yet some people get certain side effects and some don't. How did you fare taking it? Thanks....... God Bless........ Rich

 

Yes, @Kaelon, there's a lot of interconnections, especially from the shoulders up. The myofacial pain specialist I saw gave me some exercises to do after the first appointment. They gave me a somewhat greater range of jaw motion, but they pretty clearly made the headaches worse. I didn't change anything else - at least not knowingly - and so I have to attribute the change in headaches to that, and the doctor agreed. She really thinks the headaches need to be treated first. If they clear up or at least get somewhat better while the jaw issues stay the same, then she'll want to see me again. As for chiropractors, I saw once for neck issues, and they guy made it worse so I stopped.