Waxing and Waning of TMJ Tinnitus

[Kaelon]

Hi @Richard Wallace -

No, thankfully, I didn't have any adverse side effects from prednisone. I had a 14-day taper (starting at 50 mg/day). Cat's Claw is, compared to prednisone, incredibly mild and only has a cumulative effect over 2 weeks or longer. In my case, I had no problems with prednisone -- and honestly, didn't even feel any reaction, other than the total disappearance of my Tinnitus. Prednisone will only help Tinnitus if, in fact, inflammation is suspected. In the case of TMJ Disorders, neuromuscular inflammation is to blame.

You should make sure you take your prednisone exactly as prescribed. In most cases, it is tapered -- meaning, you start at a therapeutic dose (dosages of 40mg./day and higher tend to be "therapeutic", meaning that your body starts to react to these dosages), and then every day or every other day, you take a slightly lower dose so that your body's endocrine system takes over producing your body's natural supply of anti-inflammatory agents. If you suddenly stop taking prednisone, there is a very remote risk of side effects -- but these usually only happen if you have been taking prednisone for a long time (weeks or months) and then simply stop. Stopping, even in a short burst of 5-7 days, is actually pretty safe and recommended for people who suffer from asthma. In our case, you should just start tapering accordingly.

But you are right - everyone reacts very differently to prednisone, so you should trust that your doctor who prescribed you this did so for a good reason.

 

[Codaz]

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

Brabant, but look on this site www.nvof.nl and find yourself a specialist in your region. Or click on "'zoek een orofaciaal fysiotherapeut'". Find yourself one that is also specialized in psychosomatic disorders.

Do not expect results to last longer than a couple of days if you are still grinding your teeth at night, or still clenching at night. Do not expect results after 3 treatments. Do 10 or 20 and reflect. I did about 60 thus far and so far days of almost absolute quietness and days of extreme facial pain and screaming T. But at least there are some days with very low / no T.

Bottom line: muscle tension is coordinated from the brain, and you have to get rid of it. Even if there is no pain at all, muscles are so stiff that you have a lot of T.

 

[sandra72]

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 have the same thing.

 

[sandra72]

Will write more this day. I am working now.

 

[Joshua]

@Kaelon, I appreciate your posts - you seem to do a lot of research and provide a lot of helpful, detailed information.

I don't have any jaw pain per se but I do feel some tension and mild soreness around my jaw. My T has been a steady, high pitched tone, probably much less intrusive than many others' T though still distressing. I thought it was beginning to fade somewhat this past week but it's suddenly gotten louder, again, since yesterday, so I guess I could say it is waxing and waning.

I also notice that, if I jut my lower jaw out, the volume of my T decreases noticeably.

I am only about 1 month in having T and am still trying to determine the cause. Reading this thread, I am now wondering if mine is TMJ-related. I saw an ENT last week who - as most everyone in this forum can relate - was not particularly helpful, didn't look beyond my audiology test (no hearing loss) and just suggested I try sudafed and B vitamins. My dentist, however, helped me determine that I grit my teeth, especially at night.

I've had good success with physiotherapy for back pain through fascial manipulation (deep massage of soft tissue), which resolved those problems, so I'm a believer in this kind of treatment. I'm going to see my GP tomorrow to see what he thinks, and will try to find a therapist who does TMJ work in my area (my previous therapist moved, unfortunately). I'll ask him about prednisone, as well, though it looks like any relief from that would be temporary without getting to the underlying problems.

No guarantee that any of this will work, of course but, given that I still can't figure out what caused my T, might as well try.

 

[Kaelon]

Hi @Joshua - Thanks for your kind words, and I am of course very happy to help.

I come from a project management background in my career, so I am really not satisfied with just leaving mysteries unanswered and, more importantly, don't believe that problems, if left unaddressed, simply "go away" and resolve themselves. This tends to be a counterintuitive approach for Tinnitus, where so little is known about it (other than it is a neurological symptom of some underlying problem, rather than the problem itself) and even what is known is open to widespread disagreement from medical professionals. For my part, I've used my research as part-catharsis to help me understand what could be causing Tinnitus, and part-communitarian, to make sure I have at least some exposure to the topic before I post about it. There's been a lot of scholarship and research, but almost all of it at this stage barely moves beyond the anecdotal and experimental. That said, the primary cause of Tinnitus in most cases - acoustic trauma - has some very promising research thanks, in large part, to the damage done to our servicemen and servicewomen in the Iraq and Afghanistan wars. The U.S. Department of Defense has funded a great deal of research that goes beyond habituation, though habituation for sure remains the only tried-and-true method for encouraging people who suffer from Tinnitus to move beyond suffering and go on with living their lives.

In the case of TMJ disorders -- including peripheral disorders, like head, neck, and back muscle spasms -- there is generally good news for us: it can be cured. Unlike an acute trauma with permanent implications, TMJ disorders and the like are neuromuscular conflicts that arise from chronic behaviors -- like gritting teeth, as in your case; our clenching jaws, as is mine. Because the underlying problem -- poor physical habits, possibly coupled with terrible sleep, high stress, inadequate physical exercise, and possibly poor diet -- is a long-term acquired behavior, the cure for our condition requires longer-term therapies and, from what I've been reading in the past few months, really multi-factorial therapies; in other words, just addressing the jaw alone, for instance, is unlikely to resolve the Tinnitus because ordinarily there are other muscle spasms that are interconnected and arise from poor posture or inadequate sleep.

Because your Tinnitus is still very new -- in what the American Tinnitus Association classifies as the "acute" phase (less than 90 days), there is still a decent chance that you will improve with time. The best thing you can do, if in fact the signs are beginning to point towards TMJ, is to ask your dentist (and confirm with your GP) if you can start taking 800 mg of ibuprofen three times a day (with meals), and start wearing a night guard. This combinative therapy addresses both the behavior and the inflammation surrounding the behavior, and can provide incremental relief. You should discontinue the ibuprofen after two weeks, but this two week therapy is usually a good first step towards jump-starting the healing. In my case, I was nervous about the ibuprofen earlier in my treatment and limited myself to 400mg or 600mg per sitting. This was a mistake: ibuprofen's anti-inflammatory therapy really only begins for most people at around 600mg, and 800mg reaches a therapeutic dose that targets inflammatory and infectious tissues. Anything less than 600 mg has principally an analgesic effect on pain and fever, but does very little for inflammation.

Ibuprofen, when taken properly, is not ototoxic, despite the fear that often gets expressed on these forums. For many people on this forum, there is considerable fear about ototoxicity (some of it grounded in very reasonable suspicions) - so I would generally recommend always adhering to what your doctor recommends, since most ototoxic reactions to very benign drugs, like ibuprofen, actually emerge from poor formulations or multi-drug interactions. Only your doctor can help you assess the risk, but generally speaking, 800 mg of ibuprofen taken with meals three times a day is safe for up to two weeks without incident.

In my case, basic self-therapy has reached somewhat of a limit for me, so I'm looking for options that move me beyond the true waxing and waning effect and towards a complete resolution. There's enough evidence that almost everyone who has their TMJ properly treated can get their Tinnitus resolved, but it can take months or years for the treatment to finally produce ultimate resolution. In this case, I need to get the underlying structural (skeletal, muscular) problem diagnosed, and folks on this thread like Carlos1 rightly point out that there are some tests that I haven't had done -- namely, an ear/neck MRI (most MRIs and MRA's I've had done are on my brain, when ruling out the really scary stuff in the first couple of weeks of my Tinnitus).

I'll keep you in my thoughts. Please be sure to let us know how things continue to proceed for you!

 

[Richard Wallace]

Hi @Richard Wallace -

No, thankfully, I didn't have any adverse side effects from prednisone. I had a 14-day taper (starting at 50 mg/day). Cat's Claw is, compared to prednisone, incredibly mild and only has a cumulative effect over 2 weeks or longer. In my case, I had no problems with prednisone -- and honestly, didn't even feel any reaction, other than the total disappearance of my Tinnitus. Prednisone will only help Tinnitus if, in fact, inflammation is suspected. In the case of TMJ Disorders, neuromuscular inflammation is to blame.

You should make sure you take your prednisone exactly as prescribed. In most cases, it is tapered -- meaning, you start at a therapeutic dose (dosages of 40mg./day and higher tend to be "therapeutic", meaning that your body starts to react to these dosages), and then every day or every other day, you take a slightly lower dose so that your body's endocrine system takes over producing your body's natural supply of anti-inflammatory agents. If you suddenly stop taking prednisone, there is a very remote risk of side effects -- but these usually only happen if you have been taking prednisone for a long time (weeks or months) and then simply stop. Stopping, even in a short burst of 5-7 days, is actually pretty safe and recommended for people who suffer from asthma. In our case, you should just start tapering accordingly.

But you are right - everyone reacts very differently to prednisone, so you should trust that your doctor who prescribed you this did so for a good reason.

Hi again Kaelon, thanks for the info and getting back to me so quickly! God Bless..... Rich

 

[Joshua]

@Kaelon, thank you so much for your thorough response! I'm just going to print it out in full to take to my doctor tomorrow. I'll see what he says.

I share your value of thorough research as a way to reach catharsis - I've been trying to learn as much as I can as I find the more knowledge I have, the better I can cope. Despite a harrowing first couple of weeks, I've used my inquiries into tinnitus to attack my fears head on and try making more informed decisions on how I should seek treatment. Again, your posts have been extremely helpful in that regard.

I'll send updates on my progress. It sounds as though you've had some good improvement in your T as well and I will follow your story, as well, as it progresses. best of luck to you!

 

[Carlos1]

@Kaelon, thank you so much for your thorough response! I'm just going to print it out in full to take to my doctor tomorrow. I'll see what he says.

I share your value of thorough research as a way to reach catharsis - I've been trying to learn as much as I can as I find the more knowledge I have, the better I can cope. Despite a harrowing first couple of weeks, I've used my inquiries into tinnitus to attack my fears head on and try making more informed decisions on how I should seek treatment. Again, your posts have been extremely helpful in that regard.

I'll send updates on my progress. It sounds as though you've had some good improvement in your T as well and I will follow your story, as well, as it progresses. best of luck to you!

Good Luck @Joshua

 

[Joshua]

Thank you, @Carlos1 ! Same to you.

 

[Alex Senkowski]

I had a frightening episode a few nights ago. I was using Similasan ear wax drops like I usually do once a week and suddenly my left ear went dead. I could hear next to nothing out of it and assumed that I had destroyed my hearing. I spent that night in total despair and panic with the only hope being that I was booked to see my audiologist the next day and maybe I would get some answers. I spent all my time until then assuming the absolute worse. When I saw her and she examined my ear, she said it was absolutely clogged up with wax and just needed a good cleaning. I went to the hospital, got it thoroughly cleaned with 3 syringe-worths of warm water and not only did my hearing come back, it was and still is better than it's been in almost a year. I saw the stuff they drained out of my ear; it was nasty. Overall; it was one of those seemingly hopeless situations that not only turned out well in the end, but left me better off.

 

[Codaz]

Not to demotivate anyone here but TMJ issues might be curable as @Kaelon said, but there is not a single form of guarentee anyone can give you. It is very hard enough already to get TMJ confirmed as some of you may know.
I was subject of a survey last week for TMJ patients. On of the question "How long do you experience these kind of problems" the answer "more than 10 years" was an option... And no I don't hope that I have facial pain for the next 10 years but don't cheer too soon.

Facial pain because of TMJ can last for years.

Curable in my book is within 6 months, like a bone fracture. TMJ a a totally different level of severeness in my opinion.

 

[Kaelon]

Not to demotivate anyone here but TMJ issues might be curable as @Kaelon said, but there is not a single form of guarentee anyone can give you. It is very hard enough already to get TMJ confirmed as some of you may know.
I was subject of a survey last week for TMJ patients. On of the question "How long do you experience these kind of problems" the answer "more than 10 years" was an option... And no I don't hope that I have facial pain for the next 10 years but don't cheer too soon.

Facial pain because of TMJ can last for years.

Curable in my book is within 6 months, like a bone fracture. TMJ a a totally different level of severeness in my opinion.

I completely agree; it's important to go into this with your eyes wide open, as @Codaz says. Like I said above:

TMJ disorders and the like are neuromuscular conflicts that arise from chronic behaviors -- like gritting teeth, as in your case; our clenching jaws, as is mine. Because the underlying problem -- poor physical habits, possibly coupled with terrible sleep, high stress, inadequate physical exercise, and possibly poor diet -- is a long-term acquired behavior, the cure for our condition requires longer-term therapies

Important: there are no hard-and-fast rules for how long it takes to be "cured" of TMJ. I've known (and spoken) with a young lady who has suffered from TMJ-caused Tinnitus for 3 years, and was cured after 7 months of intensive physiotherapy (which included TMJ massages, radiotherapy, and wearing an orthotic device for 18 hours a day). I've also spoken with another individual, from this forum, who has been dealing with TMJ for a year and has been on a steady road to recovery. It's clear that TMJ, because it's a chronic problem, will take many months, if not years, to properly address. I know of no circumstance where TMJ-caused Tinnitus simply disappears without people working on therapy in a proactive way, because the underlying dysfunction, if left unattended, rarely improves on its own. As someone else told me recently, you really need to put these muscles in a relaxing state -- because only when they are relaxed can healing begin.

 

[Joshua]

So my doctor advised me against the ibuprofen and suggested I try Lyrica (pregabalin), which is an anti-spasmodic medication. I'll try that for a couple of weeks and, if it doesn't work, we'll try the prednisone. I'm also looking for a physio with a specialty in TMJ. Slept with a mouth guard last night and I woke up with more mild T. It could be coincidence, as it's spiking again this afternoon.

Even if it's not the source of my T, dealing with my jaw clenching is one less problem to deal with, as I deal with T.

Funny thing about my GP - he's had tinnitus for 35 years, got it from taking too much ibuprofen after a sports injury. His T is much louder than mine but he says he's so well habituated after all this time that he doesn't even know it's there and only notices it when someone like me comes in to talk about it. Which actually cheers me up considerably.

 

[Codaz]

35 years of T. Sounds as horror to me.

@Kaelon what is that radio therapy?

Dont't know about lyrica. They are not like candy. Its serious stuff.

 

[linearb]

this is all interesting to me. I have long assumed my TMJ issues were a factor in my T, but now I wonder if it might be really significant.

I did have a noise trauma in 2009, and that was what really brought this issue to the forefront of my life. But, the actual hearing damage I have is very minimal. There is a more or less constant set of left-sided noises I hear right in the ~14000hz range where I have a deficit on the left, but all the other sounds I have come and go, and something that I realize is that the frequencies that bother me the most these days, all get NOTABLY and DIRECTLY worse when I jut my jaw forward.

yesterday I was having a really bad T day, and at one point, playing with my jaw I got a really alarming cracking on the left -- it had clearly been out of socket, or something.

The only thing which has kept me from trying a really extended orthodontic device, is the fear that it could make things worse. I've read some nasty stories about anything that permanently re-positions the jaw, in that it cannot be easily undone, and some people do seem to get worse with such treatments.

 

[Codaz]

this is all interesting to me. I have long assumed my TMJ issues were a factor in my T, but now I wonder if it might be really significant.

The only thing which has kept me from trying a really extended orthodontic device, is the fear that it could make things worse. I've read some nasty stories about anything that permanently re-positions the jaw, in that it cannot be easily undone, and some people do seem to get worse with such treatments.

I asked my dentist if the bite splint I wear permanently re-positions the jaw, she said it does not. The dental surgeon thinks not. But where is the guarentee? It was clear on X-rays that my jaw muscles were retracted / curled inside so I had to wear the bite splint otherwise I would have started damaging my teeth from the grinding. And it was the only thing I could do to try to lower T. So I tried it because I trust my oral surgeon. But who knows, I hope not that it does any further harm.

 

[Mad maggot]

@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?

It can be difficult to find a good TMJ doctor. I have worn a splint for my jaw day and night for twenty years because the cartilage in the jaw joint was gone. My doc is the top TMJ guy in NZ and Australia and he visits and works in America. Many docs claim they are TMJ doctors but they have very little knowledge. Do plenty of research and find out for yourself so you can judge who is good and who isn't. Any good one will not do a thing until he has pictures of your jaw and can see exactly why it is malfunctioning so he can move your jaw joint into the correct position. Don't give up if you think your jaw is the problem. TMJ is called the great imposter because it can mimick many other disorders - even brain tumours! Such a small thing and yet it can cause so much suffering. I see Dr John Burford. You could google him and try emailing to ask if he can recommend anyone in your area.

 

[Mad maggot]

this is all interesting to me. I have long assumed my TMJ issues were a factor in my T, but now I wonder if it might be really significant.

I did have a noise trauma in 2009, and that was what really brought this issue to the forefront of my life. But, the actual hearing damage I have is very minimal. There is a more or less constant set of left-sided noises I hear right in the ~14000hz range where I have a deficit on the left, but all the other sounds I have come and go, and something that I realize is that the frequencies that bother me the most these days, all get NOTABLY and DIRECTLY worse when I jut my jaw forward.

yesterday I was having a really bad T day, and at one point, playing with my jaw I got a really alarming cracking on the left -- it had clearly been out of socket, or something.

The only thing which has kept me from trying a really extended orthodontic device, is the fear that it could make things worse. I've read some nasty stories about anything that permanently re-positions the jaw, in that it cannot be easily undone, and some people do seem to get worse with such treatments.

I have worn a splint day and night continuously for more than twenty years. Yes it cannot be undone and I will have to wear it until I die. But without it my jaw would lock and I could not open or close my mouth. Also I had severe daily migraines and the splint cured all this. It's just like wearing false teeth. No big deal. But there are many rubbish doctors claiming they are TMJ doctors when innfacttheybare next to useles. You must be careful who you choose. Cracking in your jaw is a sure sign that the cartilage has moved or is gone and you need to get it back into position or you can wear away the joint or get arthritis in the joint.