Medical Questions > Conditions and Diseases > TMJ Forum

Tmj Tinnitus, Ear Symptoms Very Severe! (Page 1)

Hello Everyone, Smile

I've been recently diagnosed with TMJD after a long and agonizing year of suffering. Neurologists, Ear Specialists, ERs, ENT specialists i've been too and they had no idea about what condition/disease i had until i started to get limited jaw opening and at that stage my disease became prevalent to myself and everyone else. Life is precious, and you only get one shot at it, its just sad to see everything end so suddenly and devastatingly.

Symptoms I suffer through, even to this day:

- Migraines with Aura (1hour to 2 weeks of severe, excruciating pain, and 60 minutes of tunnel vision and dizziness)
- Vertigo (Dizziness) (can last up to 4 weeks non-stop)
- Tinnitus (Chirping, Hissing, Ringing, Buzzing, and roaring) I even get
pulsatile tinnitus (i usually get 2-4 at the same time)
- Ear Pain without infection
- Neck Pain (to the point i can't even turn sideways to look left or right, or bend over to pick something up, lieing down only worsens it.)
- Shakiness (tremble for 1hour, usually associated with severe vertigo)
- Floaters in the field of vision as well as patterns that animate (distracting me from everything i look at, this usually goes away without 2weeks, then happens again on a bad night)
- Eye Pain, (burning sensations)
- Itchy Ears
- Hyperacusis (Sensitivity to Sound) Extremely sensitive, to the point i couldn't even run a tap or open a door.
- Permanent Blurred Vision (now i need glasses)
- Fluctuating Hearing Loss (I go temporarily deaf for couple of seconds, then hearing restores with a high pitched tinnitus sound, 10x louder than my ordinary tinnitus) this can happen 20+ times back to back.
- Hallucinations (I will hear random beeping, sometimes music and other high frequency based sounds will loop for 1-2 minutes constantly)
- Anxiety and High Blood Pressure
- Sore and Exhausted Jaw with Limited opening
- Bad Neck Posture
- (There's more)

In 5 days i go receive treatment for my problem (an orthodic to help the my jaw relieve pitched nerves) It is said after viewing my x-rays that 80% reduction can be expected, but i have to visit a chiropractor for spinal correctons and possibly get braces for further treatment. What should i realistically expect from treatment?? he said its not guaranteed that anything could resolve or reduce, just likely too.

About Myself: I'm a male, i'm 19 years (and was healthy growing up, not a single health related issue). Sports and weight-lifting are my life, the spirit of competition defines who i am as a person, and TMJD is disabling me from doing the things i find enjoyment in the most. I'm confined to a bed and a computer based on the belief that any "activity" could aggravate my situation and make it worse. When i lay down, all i hear is Hissing snakes, Chirping birds, Ringing, Buzzing and Cricket noises. The sensitivity to sound is restricting me from outdoors, or going near anything that exerts even the quiestest of sounds. Television's static is amplified so loud i can hear it 30 ft away, as a normal person couldn't hear it at all. Some sounds are replaced by cricket noises (as if those frequencies we're somehow damaged)

TMJD has destroyed my life -- living each day is an unbearable nightmare and suicide becomes a friendly voice of reason. I just wonder if anyone can tell me how successful their treatments we're, my problem is mainly muscular, he can't find anything wrong with the bone structure or disks. Has anyone ever been relieved of just the ear symptoms??

-- I don't know how much longer i can live with this disabling disease.
I look forward to any replies and i am anticipating your input.
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First Helper Xanthuss
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replied October 18th, 2007
Extremely eHealthy
I know something that may help. I dont have time now but tomorrow i will go more into depth.

and i want to say that tmd did not ruin or is not ruining your life. the only person that can do that is you. you have tmd and tmd doesnt have you. it can only ruin your life if you let it.
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replied October 18th, 2007
Supporter
Xanthuss,
I don't have an answer for me unfortunately. You are so young to be so disabled by TMJ; I'm so sorry. Have you seen a Functional Jaw Orthotic or Neuromuscular dentist? What treatments have you tried (self-helps or medications, etc.)? Do you wear a bite splint or tried physical therapy? I have found that these tend to be most helpful. Having bad neck posture will also make a huge difference and cause almost all the symptoms that you mentioned. That's why a really good, intensive physical therapy for both neck and TMJ might help. Have you tried to take an anti-depressant? Some work miracles with TMJ pain. Relaxation methods (hot tub, Yoga, massage, moist heat around neck & on jaw) could help. This is just my personal thoughts, but I would wonder if the weight training may have been too much for your neck. It's probably silly of me to ask if they checked out your neck and back thoroughly, hmmm?

These are just some thoughts and ideas. Remember that stress is the enemy of TMJ. Take care and let us know how you are doing. I'll be praying for you.

God bless...
Carol
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replied October 19th, 2007
Hello,

Thank you for all your kind words and support, I appreciate it greatly,
I spoke to a neurologist (Most highly regarded type of doctor out there) he said after treatment he "highly" doubts there will be any permanent effects, he says i should be 90-100% cured. That just made me so happy, a chance at life again would be more than a miracle. As far as the TMJ specialist goes; all of his opinons are rather based on speculation of what could happen, what could be. I don't like putting my future on a gamble, or on a probability based coin flip. He has confidence that i will gain reduction after an orthodic splint and chiropractor based treatments are set in motion. Although my TMJ symptoms are extremely debilitating and as worse as TMJ can get, i think it should be easily remedied, due to muscles having the ability to heal. Typically, TMJD is hardest to correct when bones / disks are compromised and surgical approachs are the only means for correction. My doctor compares my TMJ to a flesh-cut wound, basically when that happens wounds will heal, but you can never predict the outcome of the scar. My chances are good and thats all that i can really hope for.

- Xan
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replied October 19th, 2007
Also, I'm just wondering what should i do to help promote healing? Sit with a stiff posture, walk slowly and upright by flexing my back? use a warm cloth on the neck and face etc.... How should i sleep on my side on my stomach on my back etc etc.... Any suggestions would help greatly and contribute to the effectiveness of my overall recovery. I just want to get back in the gym and push myself to the limit, thats the hardest thing for me; the downtime. I hate being confined to a little room going blind / deaf, jaw muscle spasms, pinched nerves etc. Unable to move my neck, Lieing down doesn't not help making sleep extremely difficult. However, when i awake my symptoms are usually 80% reduced for 10mins to 1hour before they flare up again. (this could be suggestive of natural healing as i brought the concept my neuromuscular dentist's attention)

Your thoughts help me alot, i await your replies and feedback and support, it really helps me get through this thing :O
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User Profile
replied October 19th, 2007
Extremely eHealthy
sleep--and do exercises like pilates to strengthen your core. this will help your chiropractic adjustments to "stick" and will help with over all help. Its good that you go to nmd. you couldnt have gone to a better type of doctor and yes the other things that you mentioned are all good.excep being too still. you have to relax. and go slow. dont push
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replied October 19th, 2007
Supporter
Xan - check out nismat.org/ptcor/tmj for some pictures, simple exercises and basic info.
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replied October 19th, 2007
Well, sleeping is the most difficult of things, when i lay down symptoms get really bad, ringing gets really loud, hearing goes in and out, and lastly the room starts to spin (vertigo / dizziness) at that point i'm adruptly out of bed trying to walk around to reduce symptoms. However, when i wake up after a long and well rested night symptoms improve about 85-90% for a very brief time and my neck gains its full mobility to move back and forth, side to side etc. Basically, my body is wanting to heal, but there is something restricting it from intializing. I'm hoping the orthodic will let me heal better
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replied October 20th, 2007
Experienced User
Hey
Hi, i'm cindy, and i have to answer this post. When i first got injured, i had Everything you had, right down to the magnified hearing and the high blood pressure, and EVERYTHING ELSE you mentioned. I was even hallucinating, all the ear things, Now listen can you trace it back to SOMETHING that has happened. recently.???? had you had dental work or a trauma?????? did it happen playing sports. whiplash? ANYTHING??? THINK THINK.....???? ok i am very happy to hear you are seeing a chiropracter. because i think you need one..... the neck can do all sorts of weird things and so can a JAW. It can DO these things to you. It did this to me and it was HORRIBLE. and lots of times the two go together, the neck and the jaw. In my case my jaw was dislocated by a dentist, and that dentist knocked off my noggin.... i have been seeing a chiropracter since. Now if you go to the chiropracter and you are sore..... Stay with it, because you might be sore and that is normal. And be patient, it might take awhile OK? then maybe somehow you must get that jaw checked also. you should get your neck xrayed and jaw checked. Hope that helps!! also hope you feel better.... i remember being that SICK, and i feel really bad for you. let me know if you can think OF how it started, that will help us all, help you. ok love cindy
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replied October 20th, 2007
Experienced User
One More Thing
Since you sound identical to my injury, and as severe, i want to tell you one more thing. A GOOD CHIROPRACTER, should be able to feel your jaw move, like if you move your mouth. a good chiropracter should be able to feel those jaw bones by your ears, and TELL IF YOUR JAW BONE IS SET PROPERLY in your skull. mine can, feel the back of my neck, hold my head and tell if my jaw is ok or not. cindy
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replied October 20th, 2007
Thanks cindy, Smile

I really want your advice and imput since you've been through this.
Is there any hope out there for me?? Just today i was laying down, and i just touched the side my face near the ear and my hearing gave out, then returns partially, and after about 20 minutes full restoration except its extraordinarily sensitive. Deaf by simply poking my face? I also can only open my mouth only 20-25mm also. I tried to call my Specialist, but it was a saturday (today) and after i put the phone down, i heard the dial tone of the phone for 5 minutes. About 1 month ago, i went to the ear specialist to do a conductive hearing loss test with a tuning fork, although no hearing was damaged or lost, i heard the tuning fork for 2 hours non-stop, and he said that is not atypical for a person hyperacusis caused by TMJD
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replied October 20th, 2007
treatment is on tuesday and is going to cost around $3000, what do i do in the meantime?? when if i go deaf before then, my whole quality of life is being gambled, and so far i'm losing. Sad Sad Sad Sad
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replied October 20th, 2007
I please do WHATEVER you can to raise awareness about TMJD, donate for a cure, join organizations, free people from this unrelenting, torturing, and disabling disease / dysfunction -- it's unbearable, not knowing when it will strike again, and doctors are baffled when confronted by a patient with the given symptoms. Why did it take 10-12 months to diagnose me with TMJ?? it got worse and worse everyday, why did i have to wait months to see doctors?? -- My first complaint was Migraines, second was dizziness, then after a few weeks tinnnitus came, tinnitus only has so many causes, why wasn't TMJ tested??? tinnitus was associated with episodes of deafness, ear fullness then sensitivity to sound then hallucinations etc etc... FREE people from this crippling disease, it is a 24/7 struggle, its even in my dreams, i never get a break. Thanks for all your support and care, i ask myself the same question everyone else does, Why me? what did i do to deserve this??
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replied October 20th, 2007
Experienced User
Yes You"ll Be Ok
Yes you ARE going to be ok!!!! i promise!!!!!!!!!!!, There is hope!!! we will all HELP you figure it out. Dyan on the board is great and she knows alot about it, and i know alot about bad necks, you will be ok. Try to remain calm if you can? DID anything happen to you?????? can you think of anything???????? did this come on suddenly? because you sound severe, like i was exactly. I was so sick i hardly remember it, but i was at the dentists and they were WAY down the hall and i could hear them all talking like extra loud, and i remember my neighbor sitting and tapping his hand on the table and i heard it like i was BIONIC HEARING. i was hallucinating, almost blinded, all of a sudden my normal eyeglasses, i couldnt see out of them. I was falling over backwards, and i had strange vision, dizzy dizzy, i was getting anxiety like crazy, i had air trapped in my ears it was a nightmare. it was a dislocated jaw and an upper neck dislocation. PLEASE i want you to see that chiropracter!!! in this case i mean it. you will be ok!!! cindy
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replied October 20th, 2007
Nothing, this all happened when i was laying down on a couch, doctor said it was caused by a genetic bad-bite, that was degenerating muscle tissue, damaging nerves ever since i was born. It just took 19 years to develop as bad as it has and is.
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replied October 20th, 2007
Hearing keeps fading in and out, when if it goes out for longer than a minute? when if i end up deaf?? this is nerve damage we're talking about - 100% irreversible, doctors will say otherwise just to keep you calm because you're right there still is a slight possibility i may improve, but at this rate i dunno how i will make it 5 more days for treatment.
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replied October 20th, 2007
Experienced User
No No No No You'll Be Ok.
You will be ok!!!!!, you are YOUNG and You will recover, besides you have to stay around and help us now. When you get better, and you WILL!!!!you have to help others!!!! are you all alone? do you have anyone that can help you? like a friend? maybe even have someone stay with you a few days? cindy
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replied October 20th, 2007
I'm not optimistic, im not pessimistic, i'm realistic. WHat i live through now will scar me for ever. Friends? No, I'm confined to a little dark room with a computer and my thoughts. I am unable to sleep as it only worsens my condition. I sleep anywhere i can, on the floor, outside in the backyard, in the bathroom, TMJD has destroyed every fiber of my soul.

Every second is pain, every second of my life is torture, and i'm hanging on because when i hug my mother and she cries tears praying she can fix me but "realistically" she can't. Every man accepts his destiny, my destiny before i leave this world is to raise awareness of TMJD, i'm a proponent of how bad it can be, it is a treatable disease, but not curable. I'm not giving up unless it is too late, i'm not living with disability because all of this could've been prevented if doctors would have tested me for TMJ earlier. I refuse to live in disability. I've been fighting this disease tooth and nail everyday looking outside at an undedicated world that wouldn't even stop their car if i was just to ask directions to a hospital at 4 am in the morning because it gets that UNBEARABLE.
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replied October 20th, 2007
We're you ever relieved of your symptoms cindy?? your words have aided me more than any others, i really need your help.
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replied October 20th, 2007
Experienced User
You Will Be Ok
I know right now you dont think you ever will feel better, but you will be ok. You are young and healthy enough to recover. You have to try really hard to stay calm, and make it thru..it will get better. you hold on till tuesday. your Mom is there for you, your family, people on the boards are there for you. you just hang in there! its going to be ok. cindy
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