Six Months of TMJ Tennitus

Six months I ago I woke up to loud, constant ringing in my ears. While that is my "start date", the fact of the matter is that T had been sneaking up on me for years. For a long time:

• When I yawned I heard a high-pitched whine. It had gone on so long (years) I thought it was normal
• When I swallowed a big drink (swallowing a few times in a row), my ears whined. I also thought this was normal

What I didn't know was that jaw misalignment plus night bruxism was slowly pushing my jawbone further and further up into my skull, pinching and damaging my inner ear. It was getting worse for years in the background, and finally became constant 6 months ago.

But when the tinnitus started, I didn't remember all this. All I knew was there was loud ringing in my ears and seemed to be getting worse. It started at a 5/10, and panic and anxiety (and unknown to me more grinding of my teeth) just made it go up as high as a 7. I went to specialist after specialist getting more desperate as I searched for an answer. I heard everything from ear infection to "you're just getting old" (I am younger than 50). It took a month before I found a brilliant specialist who with a CT scan diagnosed it as TMJ+bruxism.  For the previous 4 weeks I thought I was going deaf, could hardly sleep, and couldn't work or concentrate. I was in despair.

 

Once I was diagnosed I could come up with a treatment plan.  Today after 4 months of orthotics and PT - and now in orthodontics to permanently reset by bite - my T is usually at a 2/10, with occasional dips into 1 and spikes into 3. This is "manageable".  Yes, it sucks, but I can work and function. I have also adapted enough that a 2 is forgotten when I am absorbed into work/pleasure/reading, but I do miss my silence.

On the downside, other TMJ symptoms have shown up, including jaw soreness and tenderness of bite. So I haven't eaten anything firmer than fish for 5 months and will have a metal mouth for the next 12-18 months.

Some thoughts/tips for anyone out there who has this:

 

- Meds - Get anti-anxiety/anti-depressant drugs and sleep meds ASAP after getting tinnitus. I was having panic attacks and took meds for that at first. After stabilizing I don't need anti-anxiety meds any more. Sleep is also critical since stress dials the volume up.  With sleeping aids I now sleep 8+ hours a night and the T runs low.  When I can't sleep much I notice it results in a bad day of T, which gets to the next point.

- Reduce Inflammation - For TMJ and many pulsatile T sufferers, I am a big believer that inflammation is a huge part of the problem. Try to keep that low with diet, sleep and NSAIDs. For me Aleve lowers my T half a notch, plus relieves pain in my jaw. Aspirin didn't do anything for my T, and Advil actually increased it a notch. You will have to experiment on what works for you.

 

- Less Coffee, More booze!  Eliminating coffee is something that most T sufferers recommend.  I read about this when my T first started and stopped my 2-3 cups a day immediately.  Six months later I miss my coffee a lot, but when I decide to try a bit, my T goes up within 30 seconds of taking a sip.  On the plus side alcohol, like Aleve, lowers the T half a notch.  However, too much increases inflammation and affects sleep, so don't overdo it. 

- Try Various Therapies - When this all started, the TMJ inflammation was not only in my jaw, but had spread to my neck. I could change the tone and volume of my T by pressing on different parts of my neck for the first 4 months. I did massage therapy for three months, and still jump in the Jacuzzi daily, plus ice my jaw every evening. Now that inflammation has gone down to only my TMJ area, I no longer can change the tone/volume of my T by pressing on my neck - and I believe this is part of the reason my T went from a 5 to a 2. I can manipulate my T today only by rubbing on my TMJ area.

- Be patient. It took a month of orthotics and PT before I saw improvement (month 3). I then saw pretty quick improvement in month 4, then have been stalled for 2 months. My braces are on for 12-18 more months, and I hope to get down to a 1, but I actually don't think I will get to a permanent "0", which gets me to...

- Acceptance. This is probably the hardest part. I accept the worse case that I will always have some level of T (which will leave me pleasantly surprised if things get all the way better).

- Compassion. I know I am "lucky" in that I know what caused my T, have a treatment plan, and have had improvement, with the potential for more improvement. While that brings hope, I know that I am an outlier, and the vast majority of people with tinnitus (especially those with nerve damage due to loud noises) have to live with their condition as-is with little hope of getting better. This is why I am doing these posts plus contribute to the site Tinnitus Talk (TT) every so often.

 

- Remember the Limitations of the Internet -  I write these posts in hopes that someone with T finds them and finds the helpful. I also linked to the Tinnitus Talk site above, but one word of caution: many (probably most) of the posters at TT are in despair, and you can find a few who are suicidal.  As a "newby" of T, one might go there, see all the negativity, and become desperate.  Remember that people who had T and got better don't post any more on sites like that, and there are lots of sufferers who do get better.  Also you do eventually adapt.  The first month is total hell, but today (even at a lower volume), my T is constant but I don't hear it most of the time.  Your brain does adapt, and there are treatments from various clinics that can help your brain adapt if you can't do it on your own.

 

 

You Can't Forecast the Business Future

One of the tasks I have absolutely dreaded over the course of my business career is the annual forecast.  It would save everyone a lot of bother if the executive in charge would just state the number that will give him his bonus and be done with it.  But instead there is a big kabuki theater of staff doing market analysis, market inputs, competitive analysis, inflation and currency trends, and creating giant spreadsheets of models that generate a number.  Then the executive then says "too high" or "too low", a few variables are tweaked, and the model generates the number desired.

 

In my 25 plus years of business I have never seen an accurate business forecast.  They were either cooked (revenue already signed and in the bag, then the model tweaked to match the sales manager's give-me), sandbagged (forecast put waaaay below the number the sales manager knew he could hit so it would be a slam dunk), or totally optimistic forecasts that everyone knew was impossible, but presented to executives so everyone knew they had time to interview before everything fell apart.  

 

I have been in several situations when things were definitely going to be bleak 12 months later - no question about it - but didn't end up in the forecast. A flat or slightly up forecast was presented and everyone hung on 9-12 more months until the truth was out.  The forecast-lie was sort of an extended layoff package for those in the know.

 

Sandbagging is my usual tactic if things are not bleak.  I might have contracts lining up for $80M, but forecast $60M.  This gives the sales team wiggle room for contingencies, but makes everyone look good when the forecast is blown out. 

 

Of course the problem when you blow out "forecasts" is that you have to explain the next year why that won't happen again.  The easy explanation is that the upside was due to "blue birds" - one-time customers who came in out of the blue and could not be forecasted.  Because these upsides were out of the blue and one-time events, you can go back to your previous baseline, plus a couple percent, successfully sandbagging for another year.

Start-Up Pet Peeves

I work in the electronics supply chain and am consistently amazed at small customers who don't understand economics.  Company after company expects that if they buy 1,000 of a custom item, that it should be the same price that Apple gets when they buy by the tens of millions.  And when I explain to them that making 1,000 units requires the factory to set-up and do a run, and that the fixed costs have to be amortized over those 1,000 units bringing the costs way up, many customers lose it.  They get angry.  They call me names.  They threaten to go to my competition (which I them welcome them to do).  And it is not an act.  They really can't understand why their little robot which they are making 1,000 (soon to be millions of course) can't have component pricing like the iPhone.  They are totally clueless.

 

I think this is partly a carryover of their consumer mentality.  Whether it is blue jeans or electronics, most products today are made by the millions, making their incremental cost infinitesimal.  And those costs are passed to the consumer (and economics tells us that in the long run price ends up at incremental cost).  So they see the iPhone cost breakdown and figure their gadget should cost that much or cheaper, and are shocked when it is multiples more.  They don't get the whole volume/price thing.

 

Those that do ask about forward pricing.  They tell me "My product is going to be yuge volume once it launches!  Price me at a million now and I'll buy more when it takes off!".  Do you know how many times I have heard this and saw the company disappear off the face of the planet?  Literally dozens of times.  When a customer asks me to do this they are asking me to become an investor, and my job is not to invest in companies, but to make money for my own.

 

The other thing I get tired of hearing is small companies wanting to do a "joint development effort".  That is just a fancy way of saying "can I get free technology from your company?" or "I need more investment money and you look like someone I can sponge from."  I got so tired of hearing this I just started telling customers "We don't do joint development.  We sell and you buy."  That gets rid of most of them.

 

Now I have been in several start-up's myself, about a third of  my 27 years in business, so I do understand that you have to push to get as much as you can from vendors.  And I do know what it's like to see only a month left of cash left and having to do anything you can to get product out.  But these companies need to understand that I have to make money too, that I have my own company's interests to look out for.

 

 

TMJ Disorder and Tinnitus

As noted in a previous post I have been suffering with acute tinnitus (often referred to by sufferers as simply "T") for nearly 5 months.  It started out truly debilitating, but has now gone to a manageable level and trending better.  Here is an overview for other sufferers out there, and a warning to others to make sure you don't suffer from night bruxism.

 

Doctors chased my T around as an inner ear problem for several weeks, which makes sense when dealing with phantom ringing (mine is a piercing 9 KHz and usually pulsates with my heartbeat).  T is most often a problem with the inner ear, but can also be caused by things outside the ear, such as the nerves, blood vessels or joints.

 

The Temporomandibular Joint (TMJ) is a ball-and-socket joint where your jaw comes into a receiving area in the skull.  When your jaw moves, the end of your jaw rotates around this socket.  As you can see from the image the only thing separating this socket from your inner ear is a little piece of cartilage.  And if that cartilage gets pinched or deteriorates, your inner ear gets impacted, which can cause everything from tinnitus to vertigo.

 

 

The set-up for my T started out with orthodontics 35 years ago that set my jaw too close my skull.  This crowded and removed any "guard band" for the cartilage cushion.  Over the years, day and night bruxism (grinding of the teeth) kept compressing this space until it deteriorated, causing tinnitus. 

 

Figuring all this out too two brilliant doctors, who I feel lucky to have found.  Most tinnitus comes with hearing loss, which I didn't have.  TMJ usually comes with pain, jaw clicking or other symptoms, which I didn't have. So I had T and few other concrete symptoms except: the level of T changed when I turned my head or pushed on the side or back of neck, and the T seem to come down some when I drank alcohol.

 

It took a very old, nearly retired ENT to figure out from these two symptoms I had some sort of TMJ Disorder.  It took another old, and a bit wacky, TMJ Dentist to figure out the why, and come up with a treatment plan.  The insurance companies consider TMJ Disorder a "dental problem", not medical, and there is no dental plan in the world that is going to cover all the expenses with TMJ.  People with this disorder have to dig deep into their own pockets.

 

After four months of treatments with "orthotics" (bite plates for sleeping and eating), and a few months of massage therapy around my neck and jaw, my T has gone down significantly.  The inflammation of the TMJ area, which caused the T to change when I turned my head or pushed on my neck is gone.  But now I can’t touch my back teeth any more (I haven't had anything firmer than sushi July).  Once my jaw was "relaxed" to a more natural state that took pressure off the TMJ, it didn't want to go back.  So at nearly 50 I am now back in braces to restructure my entire bite.

 

The hope is that in 12-18 months a new bite will allow me to chew again, plus allow the inner ear/TMJ area to heal completely and remove my tinnitus.  I am hopeful of the treatment plan due to the progress so far, but I know there is a good chance that I could have low-level T the rest of my life.

 

For dealing psychologically with T, that will be another post.

 

Tin"ah"tis or Tin"eye"tis it Still Sucks

I woke up with tinnitus (I say it with "eye" in the middle, both ways are acceptable) on July 16, 2016.  This began a remarkable journey to discover what I had, why I had it, and how to get rid of it.

 

For those who don't know what it is, tinnitus is a constant ringing in the ears.  You hear it at all times: when you go to sleep, when you get up, when other people are talking.  There is no escape from it.  No drug will turn it off.  It is constant and unending.  

 

To imagine a bad case of it: suppose someone attached a fog horn on each of your ears and turned them on 24-7.  You have no way of lowering the sound or turning it off.  Now imagine how long you could last knowing that there would be no relief from it for the rest of your life.

 

Many who have T at a very loud level over an extended period of time commit suicide.  Others at a high level are debilitated as it prevents conversation, sleeping, reading or any other normal activity. 

 

Tinnitus is caused in several ways:

1. Noise Induced Inner ear damage - The vast majority of T is the result of loud noises like explosions, gun shots, or even very loud music (Ozzie Osborn and other musicians have it).  It can also be caused by extended occupational noise like a jackhammer.  In these cases the ear becomes deaf only at one frequency, and the brain tries to make up for the missing signal by turning that pitch constantly "on".  In the case of sudden noise induced T (gun shots, concerts), sometimes the T will go away on its own in a matter of weeks or maybe months, but if it is chronic there is no cure.  In most cases the only relief is for the suffer to adapt, or use sound therapies such as hearing aids that pump in alternative sounds.
    
2. Drug Induced Inner Ear Damage - The inner ear is very delicate and can be can also be damaged by "ototoxic" drugs, most of which can cause permanent damage, but some are temporary (like aspirin).  In the case of permanent damage, these people are in the same category as the noise-induced sufferers above.  (Note: Be VERY careful of antibiotics, many of which can cause permanent tinnitus).
   
3. Somatic Tinnitus - This is tinnitus caused by some sort of problem surrounding the inner ear, such as problems with the blood vessels, tumors, or the temporormandibular joint (TMJ).  It is estimated about 80% of somatic tinnitus sufferers can get cured.  Sometimes somatic tinnitus pulses with the heartbeat, and gets the name "pulsatile tinnitus".  In rare cases a doctor can actually hear the tinnitus as well if it is caused by a constricted blood vessel or structure, making it "objective tinnitus" (a sound both the sufferer and another can hear), rather than "subjective tinnitus" (only the sufferer can hear).

So like "fever", tinnitus is not a condition it itself, but a symptom of an underlying problem.  And the ones I listed are just the main ones.  There are a few other rare causes and diseases of the ear (like Meniere's disease), and a huge number of people at the support site Tinnitus Talk have no clue what caused their problem, even after many years of searching.  But to address the T and find out if it is permanent, you need to figure out what is caused it. 

 

At first I didn't know what caused mine, only what it was like: a high-pitched, piercing whine at 9Khz, like the sign-off signal of TV stations way-back-when.  Most people with T experience a whine like mine, but some experience "whooshing", "crickets" or other noise.   The noise level can be so low that it can be ignored (I'll call a Level 1), to being so loud it is the only sound the person hears (Level 10).  Anything 7 or above is incredibly debilitating, and it is when it is chronic at this level that leads to suicide.  I had peaks of 7 at the beginning, but today am a 2 and hoping to get lower. 

 

I said my T started July 16, but that is actually when it was "on" all the time.  The fact of the matter is that I experienced low level tinnitus for a long time but ignored it.  Before July 16 it was either too low to notice (Level 1) so I heard it only when absolutely quiet, or it only happened in certain situations (when I yawned, when I turned my head sharply in one direction).  Like a sore joint I just thought it was apart of aging and ignored it since it didn't bother me.

 

On July 16 the T was not too low to ignore.  It was equal in volume to general conversation, Level 3-4.  And it did not go away.  In fact it seemed to be increasing in volume.   I was worried.

 

I went to the doctor and they said "swimmers ear" and gave me drops.  A week later they said I did not have swimmer's ear and that "tinnitus happens".  Don't EVER let a doctor tell you that!  Always, always get a second opinion.   

 

It took me two weeks before I could see an Ear Nose Throat Doctor (ENT), and during that time my worry and anxiety only got worse. The T continued to increase and I was convinced I was going deaf.  My T was now peaking at a 7 and I couldn't work, read or concentrate it was so loud.  I would sit across the table from my wife at dinner and see her mouth move, but all I could hear was a high pitched whine.  It was quite horrible.

 

The ENT took an audiogram (hearing test) and my hearing was perfect.  Usually when there is inner ear damage causing T, there is related hearing loss at that frequency.  So I did not have nerve damage.  It was not caused by loud noises.  I work in an office so there was no occupational issues.  The doctor was stumped as we sat and discussed it. The "ah hah!" moment came when I told the doctor that my T changed in loudness when I moved by head up, down, left or right. I also noted that the T reduced somewhat when I drank alcohol.

 

Based on these two issues, the doctor said that my T was caused by temporormandibular joint disorder, called TMD, but often referred to by just the joint name "TMJ".

 

So I had a cause, but what was the cure?  How would I get my tinnitus down?  That is for another post.