Wednesday, January 25, 2017

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.

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