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Old 09-19-2003, 08:40 AM   #1
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Jamie HB User
Post I am Sorry...

I just wanted to say that I am sorry to everybody for my constant complaining and negativity. I know a lot of you come here for answers and/or support and don't need to see all of this negativity.

I am very concerned because I feel I am grasping at straws here. My family doctor has all but given up on me, saying (last time he sent me to an ENT) "This is the last time I am sending you to somebody for your ears, your fine and will have to learn to live with it". This not only frustrates me, but scares me!

I am NOT confident that my problem is TMJ, because I don't have jaw problems. Minor pain here and there, and headaches often but not caused by anything in particular (I don't think). Possibly due to my sleeping habits.

Dr. Rawson has been GREAT with his treatment and support, but I am not sure he's to confident either. I think he's just trying this because everybody else "gave up" on me.

I have had my "orthotic" on now since Monday. It hasn't been fun. I have a constant headache and dizzy spells, I attribute that to things "moving". I still have the sensitivity to noise (possibly worse now?) and the clicking of my ear drums when I process noise, oh and of course the fullness when exposed to music and such...

It is true, I have had like 5 or 6 ENT's check me out. However, none have done more then the standard hearing test. Doctor Rawson is sending me to an octologist as well, so he can have one of his ear doctors take a look and give him his opinion. Who knows, by the time I get in to see him my ears might be better. I know the healing has a lot to do with your attitude towards it... but I just can't help my negativity. I am going on over a year with my problems, and over 5 months with the sensitivity. I actually feel that I'd rather be deaf in my right ear then have the sensitivity. That's how extreme and irrational my feelings are currently.

So, my apologies for my negativity. I will do the best that I can to keep and up and up attitude. I wish everyone here nothing but the best, but I admit I feel out of place. TMJ, is a horrible experience. However, I don't think I can comment on TMJ because I don't have it.

Maybe I just wanted it to be TMJ, because at least then... there are answers out there.
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Old 09-19-2003, 08:47 AM   #2
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mamaslittlehelper HB User
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Jamie...no need to apologize hun! I think we all have done our fair share of complaining...that's just a part of it and it's nice to have others who are going through the same sort of things we are to talk to! Have you tried the pain management board? If you do not think your problems are tmj related, that is a good place to try with some good caring people to talk to! But still...whenever you want to talk or just vent we'll all try to reach out and help in some way! These boards have been a Godsend for me...and boy, am I the complainer...LOL! Well, you TC and hope you get some help soon! :-)

 
Old 09-19-2003, 09:02 AM   #3
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PINKYPRISCILLA HB User
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Hi Jamie

excuse me if I am asking a question already answered, but
were you evaluated by a dentist who specialized in tmj ?Or have you not had a complete diagnosis made? Usually
an mri will tell the story if you have anything wrong with your jaw, however you can not have anything (physically wrong) but have pain due to clenching and grinding.And/or you can have pain because your bite is
not aligned properly... Just a bit of info.

 
Old 09-19-2003, 11:03 AM   #4
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saaraah HB User
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jamie - i really dont think that it's a bad thing to "complain all of the time". this is a support forum, and we're here to give you the help you need. everyone goes through a period of feeling terrible and like there's no reason to go on.

anyway, i'd give the splint a couple of months to take effect, and i hope that things will work out.

- saaraah.

 
Old 09-19-2003, 01:17 PM   #5
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Isobelj HB User
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Jamie, I have had such similar symptoms to yours,it was my ears, not jaw pain or headpains or aches which drove me initially to the ENT who did an endoscopy of my inner ears and said my ears (inside only, the outer ear looks and is perfectly normal) are very inflamed but the cause is not in the ear but the jaw joint which is pressing on the middle ear. In short, he said I have TMJ. One thing, has anybody done an endoscopy on your ears to check for inflammation, I think it must be there or you wouldn't have this vibration, rumbling, sensitivity to noise and so on?

Anyway, I believe I do have TMJ, and the cause is bad dentistry done some monthsago which left me biting on one side and with an irregular bite. I also grind and clench a lot. But, I also am starting to think I have a separate but linked ear problem, perhaps started by exposure to loud noise (for me the rumbling started after hearing very loud noise for hours), and that the two, the probably increasing joint stress in these months and then this noise, plus my being stressed and tense rather a lot all fed into eachother and gave me something evolved enough to be called TMJ, plus somekind of ear strain, swelling. I read hbep's description of myoclonus below, it really sounds like what I do have. Possibly you too? I dont really understand how/why that starts though.

Anyway, I saw a maxillo facial surgeon on Wednesday (to refit a new nightguard which I couldn't wear because it was too tigh and uneven), and he said (he is a surgeon who operates on bad TMJ cases and so he sees a lot of tmj folks) my ear issues sound as if I have a separate ear problem maybe overlooked to him and relatively few of his patients have ear sensitivity to such an extent. (I also now don't have any jaw pain or head pain, though I did somewhat for a few weeks, it developed after I first saw the ENT). I did tell him that on a net group I joined (here!) a large percentage have ear problems too, but I want to see someone to check out my ears better also. (Though still, that drs and dentist are not more aware that a TMJ can, it seems clear from this board, be strongly symptomised by ear sensitivity seems strange to me.) The first ENT I saw was pretty useless really.

A good thing, my ears have got better recently, perhaps because I relaxed a bit and that was all it needed, I still can't stand loud music, or car engines and noise triggers spasms and shaking down my face (these start off the ear noises, rumbling and humming), but the constant rumbling in them is sometimes not there now for hours at a time(this happened in the last 8 days or so, and is an odd feeling in itself, as if an insular barrier is gone). I had that rumbling non stop for 7 weeks and right now I can hear a vibration like a distant car engine. I sympathize with you so much, you can't go to see films, bear music, go to parties, I am sure you are not fine as your dr said and for a dr to say that to someone suffering is so irresponsible and cruel, grrrr.

Good luck in finding out what is wrong and I hope you feel better soon.

hugs, Isobel

[This message has been edited by Isobelj (edited 09-19-2003).]

 
Old 09-19-2003, 03:07 PM   #6
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Michelle W HB User
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My ear feels stopped up a lot of the time. Does anyone else experience this problem? I also notice loud noises bother my L ear.

 
Old 09-20-2003, 12:49 AM   #7
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Hi there Isobel and Jamie,

Isobel, I've seen your posts before and was suprised to finally find someone who experienced this ear rumbling/vibration - (initially I couldn't find anyone else who had it) do you also get a strange seashell over ear sensation - very difficult to describe, like wind? And a sense that sound is slightly deadened? Anyway, wanted to say to both you and Jamie that another thing that can really, really help, along with not tensing up through stressing about it - I do believe this problem is muscular, is very simple neck stretching exercises. I was given some really basic ones to do by the physio at the dental hospital. I have been doing them absolutely without fail about 4 times a day. I was also told not to sit at a computer for too long without a break. I am meant to stop what I'm doing and walk around for a few moments, shake my shoulders, stretch my neck a bit, loosen things up. I am meant to do this before I start to experience real pain or tension - i.e interrupt the pain cycle. When I was told to do these things I thought, give me a break, this is a major problem and that treatment seems so minor - but then pulled myself together and thought ok, I'll give it a go. It helps - A LOT. I read a tinnitus board also, when people complain of these type of symptoms, (vibration, full ear, weird deadening of sound etc..) the discussion always seems to come back to a muscular problem, often involving tight neck/jaw muscles. Honestly, if you aren't doing them already, find a book, or do a net search on simple neck stretches, the key is not to over do it, you aren't meant to feel intense pain when stretching, just a stretch, it should feel good (ish.) You should keep it easy and simple.

I do have an inner ear disorder also. I believe the problems we're describing are middle ear. I have labyrinthitis, this has caused severe dizziness, I am slowly getting better. 99.9% of the time inner ear issues cause dizziness. So if neither of you are experiencing dizziness, it is unlikely you have an inner ear problem. I don't believe the inner ear issues are responsible for the middle ear stuff, (vibration etc) Although the cochlear nerve is near the vestibular nerve, so people with my type of inner ear problem can get sensitivity to sound (hyperacusis) and tinnitus. I have a high pitched ringing in my ears alongside the vibration. I think it's highly possible that a combo of extensive dental work, a long period of eating on one side of my mouth prior to the work, an inadvisable strenuous yoga routine, a big period of stress, and then getting a virus which attacked my inner ear, causing dizziness, all contributed to the tmjd playing up. For a few years prior to this whole 13 months bout of health disaster, I used to get a brief fluttering in my ears, would last seconds. I also had a previous bout ot facial, sinus pain (with no infection) a few years ago that went on for a year, which was probably undiagnosed tmjd. The only other explanation I have been able to find for these type of problems is possibly (long shot) migraine - I do not know that I am a migraine sufferer, but am under the care of a neuro otologist (expert in ears and dizziness) and will be asking about this when I next see them.

I do think with myoclonus or stapedial muscular spasm, it's extemely hard to find a cause, although I would imagine tmjd is a big one. I also saw two ENT's and they were hopeless, couldn't explain it at all. At the end of the day something has caused the muscles in that area to become over sensitive and tmjd seems a very likely candidate to make that happen. (I had no jaw symptoms when this started Jamie, and still have very few now - mostly just tightness) If we do have myoclonus or stapedial muscular spasm, one of the heartening things about that article is that it says generally the symptoms resolve themselves. I gave up on finding definite answers, once I'd read that article it seemed clear to me that's probably what I had, and then when the oral surgeon said most of her patients get ear probs with tmjd, although didn't specify which, I figured I was probably right. I do the neck stretches - I have also been wearing an NTI for 4 months - this finally seems to be doing some good also, and as I said, for me, a very small dose of valium when it was really, really bad, could sometimes knock the vibration on the head entirely. Ultimately I think a combo of the above and trying not to stress over it have really helped.

Don't apologise Jamie, these symptoms are scarey, can make you feel depressed, and very alone - but as you will see from me, Isobel and many others, you are far from alone with them. DO take my advice - neck stretches have never harmed anyone (if done very, very gently and carefully) but they could really help. Do have faith in your tmjd dentist - if they've found a problem, as far as I remember it's on the side of your ear problems, then give the treatment a go, and also, when your symptoms are at their worst, try dropping your shoulder, not fighting them, breathe deeply, don't let them scare you. If you have faith that they will go and don't let the scarey thoughts get to you, then this is the most likely thing to make them go. Remember the body has an amazing capacity to heal itself. I understand that you need answers from an ear specialist to make you feel confident you have the correct diagnosis. If you are being sent to see someone else, try printing out the article I posted on myoclonus, press for any tests that you think you ought to have had. I think having an ear specialist reassure you that, yes, you have a problem, but it isn't life threatening, and you will get over it, would really help. It has helped me to know my ears have been examined from every angle, including an MRI. I don't know if you have the financial means, but Cymy Sue once mentioned a neuro otologist she saw in The States who was able to fully explain all her tmjd related ear problems. Might be worth getting the name of that neuro oto off her, then either travelling to see him, or alternatively, phoning his office and asking if he knows of a neuro oto in Canada who is aware of these type of ear problems and could answer your questions. Just a thougth.

Wishing you both well.

By the way Michelle W, yes, many people with tmjd experience a stopped up ear and noise sensitivity. If you put 'ears' or other terms, 'full ear' etc... in to the tmjd board search engine, it will bring up a tonne of info.

[This message has been edited by hbep (edited 09-20-2003).]
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Old 09-21-2003, 06:22 AM   #8
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saaraah HB User
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jamie - i was just doing some research online about splints, and i found a couple of studies. in both, the average time it took to see improvement while in splint therapy was 22 days [keep in mind that it could take a little bit longer *or* shorter].

you've got lots of time to get better.

- saaraah.

 
Old 09-21-2003, 08:09 AM   #9
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Jamie HB User
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Saaarh,

Thanks for posting that.

I am just not confident. The end of Week #1 is approaching, and besides a few headaches, dizziness and the loss of eating for enjoyment. I haven't notices anything different.

In fact, I think I am worse off. When I wake up in the morning my ears are WAY more sensitive then they used to be...

Whatever. I am committed to wearing this thing for 3 months to see what happens. I always liked being the guy who'd say "TOLD YA SO!". Not in this case though.

Thanks for looking out for me though! If I worked at Value Village, I'd hook you up! hehe...
__________________
The search for a diagnosis is long and painful...

 
Old 09-21-2003, 02:23 PM   #10
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Isobelj HB User
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Thank you hbep for the valuable information! I am really still at the stage of looking at simple ear diagrams to see how the ear works so far, it does bemuse me that drs can be so - NOT on top of things, but it seems essential for us, the patients to really do our homework to try to discover what is wrong as precisely as we can, and to ensure we are not misdiagnosed,I given irrelevant treatment etc. I'd like to write,and ask, more on the ear issues and myoclonus, I'm a bit pressed for time right now and tired too but will be back next week!

healing wishes to everybody!
Isobel

 
Old 09-22-2003, 01:33 AM   #11
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hbep HB Userhbep HB Userhbep HB User
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Hi Isobel,

Thanks for your reply - I've had such a bunch of ear symptoms and, like you, felt it was important to find out as much as I could, have read a lot on the net etc... If there's anything you think I might be able to help with feel free to ask. Can't promise I'll know but no harm in asking...

best,

hbep.
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hbep

 
Old 03-16-2010, 04:30 AM   #12
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emily11984 HB User
Re: I am Sorry...

Quote:
Originally Posted by Jamie View Post
I just wanted to say that I am sorry to everybody for my constant complaining and negativity. I know a lot of you come here for answers and/or support and don't need to see all of this negativity.

I am very concerned because I feel I am grasping at straws here. My family doctor has all but given up on me, saying (last time he sent me to an ENT) "This is the last time I am sending you to somebody for your ears, your fine and will have to learn to live with it". This not only frustrates me, but scares me!

I am NOT confident that my problem is TMJ, because I don't have jaw problems. Minor pain here and there, and headaches often but not caused by anything in particular (I don't think). Possibly due to my sleeping habits.

Dr. Rawson has been GREAT with his treatment and support, but I am not sure he's to confident either. I think he's just trying this because everybody else "gave up" on me.

I have had my "orthotic" on now since Monday. It hasn't been fun. I have a constant headache and dizzy spells, I attribute that to things "moving". I still have the sensitivity to noise (possibly worse now?) and the clicking of my ear drums when I process noise, oh and of course the fullness when exposed to music and such...

It is true, I have had like 5 or 6 ENT's check me out. However, none have done more then the standard hearing test. Doctor Rawson is sending me to an octologist as well, so he can have one of his ear doctors take a look and give him his opinion. Who knows, by the time I get in to see him my ears might be better. I know the healing has a lot to do with your attitude towards it... but I just can't help my negativity. I am going on over a year with my problems, and over 5 months with the sensitivity. I actually feel that I'd rather be deaf in my right ear then have the sensitivity. That's how extreme and irrational my feelings are currently.

So, my apologies for my negativity. I will do the best that I can to keep and up and up attitude. I wish everyone here nothing but the best, but I admit I feel out of place. TMJ, is a horrible experience. However, I don't think I can comment on TMJ because I don't have it.

Maybe I just wanted it to be TMJ, because at least then... there are answers out there.

 
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