Can't Cope...

[baddream]

Had it since mid 2012
I've been to 2 ENT doctors, an audiologist, dentists, family doctors
No one knows whats wrong with me

I had 4 teeth pulled roughly 5 years ago, and had braces which practically restructured my jaw
Now, when I clench my jaw/teeth togeather tightly my T gets a big increase in volume.
This leads me to believe its TMJ
My dentist, doesn't know however, infact it seems like everyone I go to here in (ST JOHNS NEWFOUNDLAND) no one knows a damn thing about it! even so called "professionals"
The last doctor I saw it was a 40 second visit and he just said "yup its TMJ!"

Brought the note to the dentist, and he looked confused and said "Everyone has TMJ"
so i asked about TMJ disorders
but he has no clue
Did a scan, no clue

I've had about 4 hearing tests
All came back perfect hearing
Even though I feel like I'm getting deafer by the day, and my ears feel clogged and full.

I cannot think about sleeping until its around 4-5am and I'm almost about to pass out from sleep deprivation. Any earlier, and I put my ear to the pillow and all I hear is a loud (around 8k, sometimes 12k) screeching.

Music doesn't even drown it out anymore. Infact, music makes it worse. Music was my life. Now what am I suppose to do?

How is anyone expected to live with this disease? it has robbed me of my life. All I do is sit alone in my room and sob at this frustrating racket inside my brain.
NO ONE CAN HELP ME
WHAT DO I DO??

 

[Per]

Unfortunately and as you may have read we are many that have been to "experts" with zero results. Countless people around the world are going to ENT's, GP's and what not only to receive zero feedback. I understand you and I can relate to your problems. In regards to the TMJ I think you would be able to get some sort of tactile information from a jaw surgeon at a hospital that deals with jaw dysfunctional issues, if you really wanna pursuit that lead then I would start sending some emails to foreign hospitals asking for surgeons, I called straight to the dentist association to ask for advice myself. When it comes to the T itself it's different cause all science can tell us is that there are some promising research being done, but as you know no cure or really no substantial relief medically. So going TOO overboard with finding "the miracle person" to give you all the answers in regards to T can lead to disappointment, research material is available on the web. But if assessing TMJ is your number one priority I would look abroad if your local offers are like zero - just remember to be skeptical in a healthy manner.

There are many of us that don't have identified any hearing loss but still have severe T. I also can affect the pitch character and volume when altering my facial expression, biting and pushing my jaw etc.

 

[Danny]

Had it since mid 2012
I've been to 2 ENT doctors, an audiologist, dentists, family doctors
No one knows whats wrong with me

I had 4 teeth pulled roughly 5 years ago, and had braces which practically restructured my jaw
Now, when I clench my jaw/teeth togeather tightly my T gets a big increase in volume.
This leads me to believe its TMJ
My dentist, doesn't know however, infact it seems like everyone I go to here in (ST JOHNS NEWFOUNDLAND) no one knows a damn thing about it! even so called "professionals"
The last doctor I saw it was a 40 second visit and he just said "yup its TMJ!"

Brought the note to the dentist, and he looked confused and said "Everyone has TMJ"
so i asked about TMJ disorders
but he has no clue
Did a scan, no clue

I've had about 4 hearing tests
All came back perfect hearing
Even though I feel like I'm getting deafer by the day, and my ears feel clogged and full.

I cannot think about sleeping until its around 4-5am and I'm almost about to pass out from sleep deprivation. Any earlier, and I put my ear to the pillow and all I hear is a loud (around 8k, sometimes 12k) screeching.

Music doesn't even drown it out anymore. Infact, music makes it worse. Music was my life. Now what am I suppose to do?

How is anyone expected to live with this disease? it has robbed me of my life. All I do is sit alone in my room and sob at this frustrating racket inside my brain.
NO ONE CAN HELP ME
WHAT DO I DO??

Take a deep breath and relax, and oh yea, exhale.

 

[JTP]

Hi baddream,

How long has this been going on, did it get worse just recently? What do you mean by music making it worse? Can't you mask it and the high pitch squeal sounds even more pronounced above music or does it get aggravated by listening to music?

If putting your ear to the pillow is the problem, a pillow speaker might help. If you can't mask it, have some sound to put your focus on instead of T. Ask your doctor for sleeping aids, many people like slow dose of Remeron (Mirtazapine). Sleeping is crucial.

I personally have lived with non-maskable T for some months now and while I am not perfectly OK with it yet, I think I have passed the this-is-the-end-of-all-just-shoot-me phase and you'll get better too.

 

[baddream]

"some months now"
Like I said though, I've had it for over a year and a half. I've been through that first phase, exept i never quite got over it.

my life before T wasn't very good, and now with T its spriling into a very dark despondent place and I don't know how much longer I can deal with it. and "dealing with it" is a good way to put it. its suffering every day.

when I listen to music the pitch and volume increases by about 40% which is a double edged sword because it also helps mask it, but if I listen for too long It can no longer mask it.

What use to help is smoking weed, but now it makes it way worse to the point where I can't concentrate on anything even with a lot of background noise, alcohol also makes it worse so theres not much I can turn to.

I just want silence again, I don't want to deal with maskers that barely work. How do you guys do it? I really dont know.....

 

[JTP]

Six months, still anxious on most days & not over it.

Do not try to mask it entirely, you cannot habituate to a sound you cannot hear, and maybe pitch and volume won't increase with lower masking volume. Don't sit alone listening your head sound, do something to distract yourself, something you used to enjoy. You may not enjoy it at first, but fake it till you make it.

I understand that I am newbie on this, I am not over this myself and probably shouldn't be dolling advice, but this is what I have.

 

[Lulubug69]

I'm so sorry you are feeling so overwhelmed. It truly can be a beast. Because everyone experiences different sound, pitch and volume it's hard to find what helps you. Mine is very high pitched and I find comfort being outside, wind blowing, trees rustling, birds chirping. I love music too, and I find it much easier to listen to if I'm not trying to use head phone s or ear buds. They made my ears hurt after awhile. I play it in the room, out of my stereo. I start very low and work myself to a comfortable level. I play what I love because I can lose myself in it. I prefer to drive with just the car noise, without the radio as it can get too busy and overwhelming. I really don't try to mask it but match it. Have you been offered anything for anxiety? I believe there are some of us who have found it to be helpful. I wish you well and hope you can find some peace.

 

[Leah]

We have all had those hard days, hope you feel better soon.
All of us are searching for a cure or at least some comfort.
We DO know what you are going through.

 

[mick]

@baddream
Dealing with all the "I don't knows" from the so called experts is enormously frustrating. Many of the people on this forum have experienced it. It doesn't help that you have non-stop racket going on in your head, too. The frustrations of dealing with doctors just doesn't make the situation any better.

I have two comments that I hope will you relieve some of the anxiety you must be feeling.

1) I could not listen to music at first. In fact it was several months before I could. Anything with violins in particular used to drive me crazy. Looking back, I think that discomfort I felt listening to music was more hypercusis than tinnitus. It seems common for people to get hypercusis with T, especially at the beginning. For most, the hypercusis goes away. For me, I found just staying away from sounds that annoy me (eg, just listening to talk radio, audiobooks, and podcasts instead of music) help. Also, not being overly protective of my ears helped as well. I found my hypercusis was worse if I did not expose myself to enough sound for long periods of time. After 4 or 5 months the hypercusis went away completely. When I get a big spike in my T, the hypercusis comes back just a littlebit (a mere fraction of what it was when my T first started). Hopefully, this symptom will go away for you too with time. Don't protect your ears too much, but obviously if your going to be in a high noise area, wear earplugs. What I'm saying is that I think that you have a pretty good chance of returning to enjoying music again, so don't allow yourself to get too worked up over the fact that you can not enjoy it now.

2) Get your mind occupied with something other than your T and the misery it causes. I hope that you do indeed find the problem is TMJ and that there is something that can be done to fix that problem so that your T goes away completely. If TMJ is your problem, I suspect there won't be a quick solution to it though. In the meantime, you're probably doing yourself more harm than good by not relieving the mental pain that comes with T. Do something to relieve that. Probably the best thing that you can do at this point in time is to get yourself focused on something, anything that takes your mind off of T. Let your mind drift to any thoughts that hold your interest even if it is only a short period of time. Build something. Take a break from doctors. Have a conversation with anyone about anything. I found early on that when I talked, particularly about something I was passionate about, that I could get my T to drift in the background. It didn't stay there, but the few seconds or minutes of relief were ... well ... relieving. The more you can take your mind off T, the greater the relief.

I'm not saying this will cure your T, but it may relieve some of the stress and help you break out of the bad place that you find yourself in mentally. If you can do that, you'll feel better and think clearer so that you have a better chance of being successful with other things that might make a lasting difference in your T. I've mentioned this supposed Confusius quote before: "Pain is unavoidable, but suffering is optional". Relieve your suffering just a little by forgetting about your T for a while. That is not the same as saying you're "going to have to learn to live with it", or giving up on finding a lasting solution. It just means giving yourself a break from the suffering for a short time with whatever you can. The best way to do that is to occupy your mind with other thoughts at every opportunity.

I hope things turn around for you, and that you feel better soon.

mick

 

[nills]

feel for you brother ... iv`e been there on my knees, crying and praying to a god I never even believed in ... it`s business as usual now but with a believe and trust in what is happening will make me stronger and the possibility of relieve one day in this lifetime... hang in there and don`t believe what stories your mind makes up ... you can do it.

Do you play an instrument ... for me when I play an instrument I don`t have enough attention to focus on the instrument and the T .. so I tend t forget it while playing. I play guitar and flute (more guitar cause G note in my flute hurts my ear now)