Is My Tinnitus Unusual? Please Help Identify It.

Discussion in 'Support' started by Tamalak, Jun 3, 2013.

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    1. Tamalak
      Volatile

      Tamalak Member Benefactor

      Tinnitus Since:
      3/2011
      Starting a bit over 2 years ago, I started to get intermittent (average 1-2 hours a day) noise in my left ear. The sound is like a high pitched, pure electronic tone, alternating every second or two (but very erratically) with a quieter flickering sound as if that pure tone was being repeatedly dunked underwater, or like the "wire" that feeds it was being "bent" (if it were an electronic toy). Nothing special happened to me around the time that I started getting the T and after a couple of weeks it went away. Then weeks later it came back. Then went away again. Then came back, and one morning I woke up, yawned, and heard a soft sort of echo of it in my RIGHT ear.

      Since then it has been gone for as long as a month and a half. It has been nonstop (constant pure tone) as long as a week. Seven times it has tricked me into thinking it's gone forever. At this point either I'm suffering its torture or bracing for its return. My right ear is now constantly going, but it's so soft it doesn't bother me. The left is either silent, or very distracting.

      Sometimes when I rest on my left side, I feel symptoms similar to swimmer's ear. Like pressure, or trickling, or a hot/painful/relieving sort of "opening up" feeling. Like a little worm is living inside my ear and causing the T.

      One time when the T was particularly bad for a week, I got flu-like symptoms, and my neck became very sore (like I had slept with my neck crooked, except it was on every side of my neck).

      Again when it was bad for a week, I would find that when I spoke it would "buzz" my ear. Like a physical sensation of buzzing.

      I've almost never gone to concerts. I often played video games with headphones but they were the nice cushy kind and I didn't think they were too loud. I use speakers now.

      Thinking there must be a physical cause, I went to an ENT. He looked in my ear, cleaned it, didn't see anything special. Told me T can be caused by just about anything. Tested my hearing (hearing is perfect, no hearing loss). Strapped electrodes to my brain and tested my brain's responses to noises in my ear. No issues there either. This just reinforces my theory that there's something physiological IN the ear causing this.

      The idea of therapy and habituation enrages me. If I called a plumber to my house and he said "well, I'm not going to fix your toilet, but here's some therapy to help you adjust to your new life of shitting in the woods", I would kick him out of my house. No plumber would say that. Nor electrician, software developer, painter, janitor, astronaut, winemaker, soldier, cook!! If there was a problem with the STUFF they worked with, they would be like, "Hey! Let's FIX THE STUFF!"

      WE are made of stuff. There is a small, physical defect with the STUFF in my left ear. A very small defect within like an inch of known space! Help me fix it. What is the first step!?

      Wild guesses on my part?
      -One of my back upper left teeth has been semi-rotted from birth. It has fillings that haven't been checked in a while.
      -I have a bad habit of clenching my jaw hard when I sleep.
      -Was exposed to an explosively loud noise (on my left!) at the age of 4. Developed T at the age of 28?? I never had even one second of T before I got it two years ago.
      -Some nerve, fluid tube, air tube, something?? Being pinched by a flickering muscle? The way that it's a pure tone that gets "strangled" or suppressed, it feels like it's struggling to make its sound sometimes. Like it's a hose that keeps getting pinched and its flow stuttering.
      -4 years ago (2 years before I got my T) the back of my nostrils became (permanently) swollen up a bit, this reduces my nasal capacity by about 50%.
      -Even before that, I've never been a super steady breather. My parents would notice as a kid that I would sort of hold my breath for too long and then exhale/inhale in a woosh.
       
      • Genius Genius x 1
    2. markoana

      markoana Member

      Tinnitus Since:
      2.2013
      This is top thing that I have read on internet in the last 2 months, GREAT man! :)

      BTW.my small advice, do not mess with ENT-s, they can not help in 95%....just can demoralase u...and put u on the wrong side of searching the real reason for your T...
      All Best.
       
      • Agree Agree x 1
    3. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Hi, Tamalak,

      Your T does sound unusual, but I'll bet if you interviewed each of us on Tinnitus Talk, you'd find that each person experiences tinnitus in a slightly different way. In other words, I think our tinnitus experience is probably unique to each of us!

      I was just wondering if you have been to a dentist or TMJ specialist, to see if they could check your teeth and your bite. Maybe they could suggest something you could do that might be helpful to you.

      I think your wild guesses are very good ones, and you could make a list of the possible causes, and go over those with your dentist or TMJ specialist when you see him or her.

      The intermittent variety of tinnitus that you describe must be maddening, because just when you think it's getting better, it gets worse again. Mine is the constant kind, which doesn't fluctuate.

      I'm sorry you're having problems, and hope that some of our suggestions here on these forums will be helpful to you.

      Best wishes,
      Karen
       
    4. Paul D
      Balanced

      Paul D Member Benefactor

      Tinnitus Since:
      03/01/2010
      I've gone through most of the stages and symptoms you describe, Tamalack. It seems T can take advantage of any weakness to wriggle its way into one's consciousness. I know it's not supposed to be funny, but I loved your analogies after expressing rage at the futility of the situation. But in my opinion, therein lies the key to coping as symptoms go up, down, or sideways - Build on that...a certain amount of recognition and acceptance, yet stubborn determination not to let it take over your life. Good luck!
       
    5. Tamalak
      Volatile

      Tamalak Member Benefactor

      Tinnitus Since:
      3/2011
      Thanks for the kind words and welcome everyone. This is easily the worst thing that has happened to me and has angered me beyond belief.

      Thank you! But just to clarify, I was not expressing rage at the futility of my condition. Quite the opposite: I am enraged by the culture of futility concerning tinnitus, from ENTs in particular (at least the one I went to).

      "There is no cure for tinnitus" <- this is 100% untrue. Even if we don't KNOW the cures yet, they absolutely must exist. Tinnitus is just a defect of the stuff in your head. Probably a simple defect. This is triply the case for intermittent tinnitus like what I have.. if it's intermittent, that means the body is randomly curing itself. Without even trying. FOR NO REASON WHATSOEVER. Your body does not care that you have tinnitus and makes no effort to remove it. If doctors can't compete with THAT level of noneffort, they should hang up their damn stethoscopes.
       
      • Like Like x 1
    6. mick

      mick Member Benefactor

      Location:
      USA
      Tinnitus Since:
      11/2012
      I understand your frustration perfectly, and I too have made comments like your comparisons to other professions. I sometimes wonder how doctors would cope working in other such professions. In my job, like most of the rest of the world, when there's a problem to fix I don't get to just shrug my shoulders and say "I don't know". If I did, I'd be looking for a new job. There are lot's of times where I say, "I don't know the answer at the moment, but I'll do my best to figure it out. I'll do everything I can to move us closer to a solution." ( I ain't ever heard those words from a doctor.) There have been a few times where I haven't been able to figure things out (not many), but at least I always try. Doctors cave-in after 30 seconds of thought. If the solution is not at their fingertips they have nothing to offer. Doctors make enough money just seeing healthy people. Why put out effort to solve a challenging problem when you can make lot's of money dealing with easy problems? You'd think, in a case like yours where the T comes and goes, that they would at least be curious enough to dig in and try to figure out what could be going on to account for the intermittance. But evidently, doctor's brains don't work that way. They are always looking for a pill to give you and if there isn't a book that says give this pill for that ailment, they don't do anything.

      Part of the problem is that they are compensated for trivial work. For instance, at least in the US you need a doctor's order to get a blood test. Why? Why can not I just order my own blood test? Why should I have to pay a doctor to give me an order for a blood test and then have to pay for the blood test, too? Same way with x-rays, and other medical imaging, or most any test that doesn't present a siginicant risk to the patient or others. I can see if there is a great deal of training required to make decisions about tests that present significant risks to the patient, but if I think I have a broken leg, why do I have to pay my primary care or an emergency room doctor to look at it first, and order an X-ray, and then have to pay a radiologist, too. Why can't I just go to a radiologist and pay one doctor for the service and eliminate the middle man (my primary care doctor). Even if there is a possible risk, as long as I'm informed of the risk, why should I be restricted from having this ability?

      Something needs to change with the way doctor's are compensated in order to ever make them more productive. As it is these days, they get paid well whether they do a good job, a bad job, or essentially nothing. I often thought it might make more sense to submit bid requests for doctor services. Contact several doctors with a request for quote detailing your problem and the solution you're looking for. Review their bids and select the best bidder. Add incentives for outstanding work. That would turn doctor's business models on their head. Effective, innovative doctors would make money; lousy, lazy, ineffective ones would go out of business. (I know, there is a certain degree of impracticality with this, but it illustrates what is wrong with the current model for physician's remuneration - there is no pay for performance.)
       
      • Like Like x 1
    7. Paul D
      Balanced

      Paul D Member Benefactor

      Tinnitus Since:
      03/01/2010
      There are still a few out there. I had a doc quite a few years back that, after running through all my ailments, made me give him a general picture of my life at that time, with a few poiniant questions thrown in. Instead of treating each and every little ailment and its manifestation, he took a whole life/whole body view. Guess what, all the problems gradually went away. Happened more than once; unfortunately he retired and died young. My wife just found a great GP through a referral, after quite a few years of no insurance, meaning no docs. Again, she spent time getting to know the person rather than listing all the ailments and referring to a bunch of tests and specialists. Rare, but they are out there.

      You can. Unfortunately, not here. Living in Phoenix, with little money and no insurance for years, it was four hours to the border. Not exactly the same as treatment and diagnosis in the US, but not bad either. 20cts on the dollar for good, recommended care. If you have the money, the medical tourism industry is growing by leaps and bounds in countries with care far superior to Mexico. We were preparing for such until I recently landed a job with top-notch Blue Cross. But it still kills me what a rip-off US medicine is to the average Joe. The $10 aspirin and such. Geared to only those with top-flight insurance. If you have none and don't have deep pockets, you're screwed.
       
    8. Markku
      Inspired

      Markku Director Staff Benefactor Hall of Fame Team Trobalt Team Tech Team Awareness Team Research

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      In Finland the public health care system ("free" for everyone, and it's quite good, but then again all of us pay a lot of taxes to cover the costs, and if you use private health care, you still pay the same amount of taxes, so you basically cover other people's public health care) works like this. First you see a regular doctor, and then they refer you for a specialist if they think it's necessary (it's not easy to convince these regular docs to refer you).

      However, you can go private. Payment can be made out of pocket (without private health care insurance), or using insurance.

      In private care you can choose your specialist and visit them directly. Almost all top notch specialists in Finland have private practices (some work private 100%, but many work private on the side along with their public health care day job).

      In private care you can basically tell what you want. They don't care what tests you want (unless a test is clearly hazardous), since you are paying for them; not the taxpayers.
      However, if you are using insurance to pay for it, then the insurance company wants an affidavit from the doctor indicating the test or treatment is absolutely necessary, or the insurance company won't cover it. This means that you can't just go to a private clinic trying to pay with your insurance and say "I have a headache. Give me an MRI."
      But if you pay out of your own pocket, then only sky's the limit and you can get that MRI and almost whatever else. You can even go directly to the MRI center without first visiting a specialist and ask them to do the procedure and they'll give you the pictures, with which you can consult any doctor you want. The same goes for blood tests; just give the names of the blood tests and the results will be posted to you, without any doctor intervention; you can then consult any doctor you want.

      I'm surprised if the system doesn't work like that in the US if one pays out of their own pocket?

      If one has the funds, it's often very convenient to directly go to the specialist of your choice, and skip the primary care doctor.

      In Finland, prices for private specialists are usually about $140 - $160 per 20 minutes. Having a head MRI done privately costs around $500 - $1000 depending on which center you go. A single blood test is usually around $10 - $50 depending on what you want tested.


      Markku
       
      • Like Like x 1
    9. mick

      mick Member Benefactor

      Location:
      USA
      Tinnitus Since:
      11/2012
      Its a license to practice medicine issue here, not an insurance one. Medical tests can only be ordered by a licensed physician. Blood test labs, MRI imaging centers, etc, can only perform the test with a physicians order. There is kind of a work around for blood tests, but it is a racket in the sense that sets up doctors with pretty easy income for just having a license. There are a number of on-line (web based) sites where you can order your own blood tests, but basically they are sites operated by someone with a medical license who will just put in pre-paid order for you to a nation wide testing lab (Lab Corp). You pay the on-line physician a fee that includes his pay and the payment for the test. The doctor is still taking a cut for doing nothing but taking advantage of the license he possesses.

      The interesting thing about the on-line blood test thing (and this just illustrates how strange the medical insurance system is here) is that there are some tests that I can order through these doctor's web sites (which are not part of any insurance plan) that cost me less than what my insurance company would have to pay, and less than my after insurance cost to visit a doctor. So I have used them to save money on a couple occassions.
       

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