Hello, I am new here and would like to introduce myself. I am 15, and live in Boston, Massachusetts. I am aware that all of us here are suffering to some degree, and would greatly appreciate help from fellow sufferers.
Before I get started about my symptoms and when they came, it it probably important to mention that I suspect that I have depression. From what I read, this my cause or contribute to hyperacusis (an increased sensitivity to noises that don't bother other people). It is probably also important to note that I had dizziness last year, but only in summer. Once the summer ended, the dizziness did too.
Symptoms I experience:
Ringing in the ears, which is a high pitched tone. At first, it was in both ears, then just in the right one, then just in the left one, and now mostly in the left one, and a little bit in the right one. The ringing started after I came back from South America, which leads me to believe that it was not noise-induced,
Sensitivity to loud noises. High pitched noises bother me more than low-pitched noises, but even someone talking loudly is too loud for me.
More recently, an increased sensitivity to light, and "floaters" which are small dots that float in my vision and move with my eyes. I also noticed small, bright, specks that move around in my vision. I especially notice these on a bright, plain background such as the sky.
An increased difficulty when swallowing. Also, when I relax my throat, I can't breathe. It seems that I have to push the moving part of my throat down just to be able to breathe. One doctor looked in my nose and said it was swollen. She prescribed Flonase, which I have been using with no result. It has gotten worse.
Headaches all over my head. On the left side, on the right side. Sometimes even going as far as my neck. Tylenol helps, but only for about 2 hours.
Pain in my right elbow, wrist, and muscle in between. I don't know if this is related or not.
Pain in and around eyes that comes and goes, usually with pain on that side of the head.
This just started today, but pain in the jaw, more pain in left side than right. I noticed that if it's quiet, and I chew something the ringing in my ears gets worse until I stop chewing. If I push my jaw back, my right ear rings loudly and more high-pitched. If I push my jaw forward, the ringing in my left ear gets louder, and is full for about a minute.
I woke up this morning with a lot of fullness in my right ear. I cannot hear clearly from that ear. Is this permanent? My left ear is also full, but only sometimes. Fullness comes and goes in my left ear, but has been the same in my right ears for 12 hours now.
Dizziness that is a lot worse than the lightheadedness that I experienced last summer. This dizziness is not a spinning sensation, but more like the dizziness you get when when you have a fever, except a lot worse.
Sleepiness. This sleepiness has been going on for every day for about a year. But now it's a lot worse.
Teeth sensitivity and pain. It seems that all of my back teeth are sensitive to cold. Whenever I get a headache, my teeth also hurt on that side of the head.
Increased nasal congestion. I have always had nasal congestion problems, but now they are worse.
Occasional jaw clicking on left side.
The first time I noticed any symptom of TMJ or Meniere's was when I went to a school event with loud music on June 3, 2004. I noticed that the music was unbearably loud, but no one else seemed to think so. I never thought much of it. The higher pitches were worse, but the loudness of any pitch seemed unbearable.
I came home after that and didn't think twice about it.
Exactly one month later on July 3, 2004, I went on vacation to South America to visit my family. On July 10, I went to a pool place (like an arcade, except for pool only) that played loud music. It seemed that my sensitivity was worse and I could not bear the music.
For the whole 3 weeks I was in South America, I was very stressed out. I was worrying about many things. Maybe I was clenching my teeth when I slept? Could this have made the hyperacusis worse?
After the 3 weeks were over and I came back home, I still had more things to be stressed about. A few days later, I noticed ringing in my ears. I had a high-pitched tone of the same volume in both ears.
My parents became worried when, one day, I became very dizzy. They took me to the Emergency Room, where I was given two big full bags of IV fluid (saline solution) intravenously. The doctors gave me the IV fluid because they saw that I had orthostatic hypotension, and that my mucous membranes were dry, which indicates dehydration. For a full 30 hours after getting the IV fluid, the dizziness was gone. And, for the first time in a long time, I was finally relaxing, because I thought I found the solution to my problem. I was following the doctor's orders and drinking lots of water, and some Gatorade.
Since school had ended, I noticed that I would always wake up early in the morning (3 or 4 AM) and couldn't go back to sleep. First the first time in a long time, I was able to sleep deeply and wake up late. When I woke up, the hyperacusis was less, and I didn't have the anxiety that I became used to.
That night, not more than 30 hours after recieving the IV fluid, the dizziness came back. Every day, the dizziness would get worse.
I went to see an ENT about 3 weeks ago, who said that I may have Meniere's disease. I took a hearing test, which showed I had some low-frequency loss, but was still in the normal range. My ears were full that day, and were ringing loudly. I had read a lot about the disease, and feared that I had it. It is a horrible disease, and it was my biggest fear that the doctor would say I have it. After the visit, I was extremely depressed and anxious. Whenever I get depressed, I lose my appetite. This time, I went for more than 24 hours without eating and still felt nauseous. I felt like my life was over.
About 3 days after that, my mother wanted a second opinion, so she took me to another ENT in a different hospital. The doctors there weren't very sure what I had. I had another hearing test, which one doctor described as "pristine". After the uncertainty among the doctors, they brought in a doctor who seemed to be an expert on Meniere's disease, autoimmune inner ear disease, and peripheral vestibular disorders. He walked in, and asked me what I knew about Meniere's disease. Again, I felt like my life was over. After about 10 minutes, I told him all that I knew. He asked me about treatments for the disease, medication, etc. Since he asked me about it, I thought he thought I had it. He said that he didn't believe I had it, and that there was no indication of it. He said he was asking me about it to see how much I knew.
He also said that I buy a Nightguard, and to wear it at night, as clenching of the teeth may be the problem. So I went to Walgreens, bought one, did the boiling procedure, and wore it that night. I had slow improvement of the ringing and fullness. Last night when I put in my Nightguard, my jaw muscles seemed to be stressed, and wanted to close. I figured that if my jaw muscles were stressed to be closed, then I would sleep without my Nightguard. Today, I have had the worst ear fullness I have ever had, my throat issues are also the worst they have been. What should I do?
The strange thing is that now, my left ear rings more, but my right ear hurts more. The right side of my head also hurts more than the left side of my head. I also experience a kind of low frequency humming in my right ear, especially when there is sound.
Sorry that you are dealing with many symptoms. I have been dealing with a similar question for over two years (TMJ or Meniere or drug oto-toxicity). ENTs say inner ear and dentists say TMJ. Meniere does not directly cause pain and never joint noises (clicking or grating or popping jaw). At least that is what the traditional theory says. It causes vertigo, hearing loss, tinnitus and hyperacusis. From your other symptoms (pain, clicking, eye floaters) you probably have TMJ. The question is whether it is on its own or in addition to Meniere. In the very early phases of Meniere the tinnitus and hearing loss may come and go. Later they become permanent. It is very difficult to say for sure if you have one (TMJ) and not both. I would suggest you see a neurotologist (a doctor that specializes in Meniere and other inner ear diseases) who would perform a battery of blood tests and balance/hearing tests. The blood tests will rule out many problems that can cause some of your symptoms, and balance/hearing tests will tell you if the inner ears are functioning normally (no vestibular and cochlear losses). If all those come out negative, you may have a TMJ problem only. I would also suggest you see a very good TMJ dentist to confirm that you have TMJ. I warn you though, there are more bad tmj dentists than good ones. Do your homework very carefully before you choose your TMJ doctor. These forums may help you with what you need to know to find a competent TMJ doctor. If you are confirmed to have TMJ with pain, then you need to treat it. Hopefully that will resolve all your problems and give you the answer you want.
Sorry it is not that simple or black and white with these diseases. Some recent studies by a Swedish group even claim that Meniere is caused by jaw (TMJ) and cervical problems (neck tension), and that treating them reduces the symptoms. Good luck with your search for a definitive answer.
Thanks for the reply. I came back from the emergency room a couple of hourse ago. After going through all of my symptoms, the doctors first thought it was Meniere's, and then after me describing more of my symptoms, they were very sure that it is TMJ.
What they also suspected is that I have allergies, and that these allergies are a lot worst now, because of the late summer pollen and ragweed. They say that if the fullness in my ears is reduced after the first frost of the winter, then I have allergies and TMJ.
I am also scheduled to have an ENG test done on the 7th. Wish me luck.
To anyone who experiences ear fullness with their TMJ, does it seem like it's gone when you are yawning, then comes back when you are done yawning?
Condyle, are you saying that we are all at an increased risk of developing Meniere's disease?
That is certainly a lot to absorb for such a young person and I wish you the best. Just wanted to touch on something you mentioned briefly, in the context of it helping your healing. I suffered from major depression and for a long time, I didn't know what it was or how it was impacting me. But given the unecessary anxiety that condition resulted in, as well as the stress of not really having control of my emotions, my bruxism and TMJ got worse and worse. There were also a lot of panic attacks (sensitivity to noise, swollen throat, etc). Now I'm not a doctor, so I would never say that any of your symptoms could be worsened by depression, but what I do know is that if you are suffering from a mental illness, your ability to take control of your health and work with you doctors to heal the real issues in your life (TMJ for example) is impaired. Stress shows up in the body in a lot of ways.
Just think about examining that as well when looking at your treatment options.
Queen_laugh, I do believe that my depression contributed or even caused my TMJ (if it is that). In the 3 or 4 weeks following the first time I heard ringing in my ears, I was was very depressed, extremely irritable, and under stress and anxiety 24 hours a day. I could never relax. In this period, I also had a lot of back pain. Terrible back and neck pain and also a lot tension in my shoulders and neck. I still have back pain today, but less.
It's also important to mention that I have had back pain for about 5 years, since I was 10. I have a very hard time convincing my family to take me to a doctor, because they don't take me seriously. This is also the reason why I don't want to tell my family about the depression problems.
Oddly enough, depression, TMJ, and some allergies have been associated with hyperacute hearing.
Pedro, I've never had any kind of orthopedics done, and I haven't even had any injuries to the back.
The symptoms didn't really come on so suddenly. The first symptoms I experienced was sensitivity to loud and high pitched noises, then ear pain, neck pain and stiffness, then ringing, then the throat problem, and then fullness.
But if you consider that 5 months ago I had no symptoms, then I guess this did come on fairly suddenly.
The doctors at the ER said to double my dose of Flonase, because the late summer allergens, and the fact that I was unresponsive to it before. My right ear is less full so far.
The thing about the dizziness is that it always happens at night, sometime between 6 and 10 PM every night. I also get dizzy 1 or 2 times thoughout the day, but not as badly, and doesn't last as long.
Soundsensitive, I'm surprised reading your posts, because you have very similar symptoms to mine, only my TMJ symptoms explicitely began in an obvious way after I developed maloclusion after work done by a bad dentist last year.
But, for a few years (I know I have ground and clenched my teeth for a few years so maybe this is the cause) I have experienced dizziness from time to time, for unknown causes, my doctor didn't really take it seriously and thought it was low blood pressure (all blood pressure tests I have had done though were perfect) caused by anxiety, fatigue, it never lasted too long or occurred very often, and was helped by sleep and rest so I just accepted it really. Then, I travelled from the UK to Santiago and fell apart after the long flight, I was dizzy for ages, it took me a long time to get over that. I put it down to jet lag, and stress. I did not have ear problems then however. Last year, I had some bad dental work in January, and then developed a series of symptoms, achiness in shoulders and arm, particularly right arm (I am right handed), and a funny tiredness in my jaw occasionally. In around last July I got back pain in my lower spine as if it could not hold me up and I could not bend well, which lasted for a week and was quite frightening and then inexplicable. This back pain came just after exposure to very loud noise (music), a couple of nights before which had been so loud Irmember thinking it could surely be harmful, plus I slept badly hearing it and and ground my teeth in my sleep. Then, immediately after the back pain, I developed a sprained feeling in my right wrist and along the top of my thumb, and at the same time suddenly got a roaring in my ears which would not stop. This ear noise lasted without stopping for about six weeks. An ENT did an ultrasound of my ears and said the inner ears were inflamed, but the cause of the inflammation was not in the ears but coming from the jaw joint inflammation (I don't know how he knew that but I do believe he was right), and that I had TMJD. I went on to try a splint which unfortunately did not work, now I am working on helping my bite.
I believe my symptoms are caused by factors which reached a stage where they all fed into each other and produced a concatention of eventually unignorable negative symptoms; ie. stress (causing tension, muscle tightness, muscle spasms, back pain,teeth grinding, ear inflammation, tinnitus, facial and head pains), TMJ (causing malocclusion, accentuating teeth grinding, ear pain and tinnitus, head pain and all of the rest of the previous), using the pc a lot, having bad posture, being exposed to loud noise - all of these things have, due to short term exposure (like the noise) or long term exposure like the malocclusion and stress, created bit by bit, as they built up and more negative factors were added, what is wrong for me now. I think if I had not been both stressed and exposed to that loud noise that my acute and severe tinnitus period may not have begun or may not have begun at that point, or may not have been so bad, although I believe the TMJD could not have been avoided unless I had immediately corrected my occlusion after it became bad, which I did not, not realizing how significant this would be.
Now, since then, I clearly feel how my exposure to noise affects me, my maxillo facial surgeon (I have not had surgery and will not, but he helped to diagnose what is happening to me) 'just' noise can make the tiny bones in the ear move, which can cause them to bother the tm joint, this in turn can cause pain in the face, head, neck (the SCM muscles in the neck cause pain on the other side of the head) and teeth, and affect hearing, and and even cause dizziness to the point of passing out also (once recently when cleaning and using my right arm repetitively, I suddenly got very dizzy, and pain started on the left side of my head, around the eye and temple and then my left ear suddenly started to make a high pitched buzzing, it was scary but since I have read all of this can explicitely be caused by the SCM muscle being overstrained - the buzzing stopped after a few days), shoulders, spine and so on. Vibration, like the vibration from being in a bumpy car, has a similar effect. Changing altitude and car vibration causes pressure in the ears and also tight spasms make the inner ear move and creates fullness, pressue and fluid build up in the inner ears (when the ears are not infected or in themselves causing this, TMJD can cause symptoms in the ears exactly like those caused by infection in the ears). Cervical (neck) tension (which I get in a car or anywhere there is loud noise) can cause I realized tinnitus, fluid build up and pressure in the ears (almost like a little ballon moving inside the ear and sometimes leaking of fluid from the ear). Noise and vibration for me can lead to pain across my temple area, tight pain across the top of my mouth (upper jaw) and teeth pain ,when my teeth are fine. All of this pain stems from tension and muscle spasms caused by the vibration.
I now most of the time have normal hearing, but can be very sensitive to voices, particularly loud, base voices. On the whole however now, if I am quiet and rested, my ears are fine, and the source of their problems is not in the ears, but in my tight muscles and jaw joint inflammation.
I feel I am writing/thinking in circles (!) but hope something of this could be of help. For a long time I resisted the idea that my problems could be helped by more than an approach aimed at correcting my occlusion, but now I think that even if I have suddenly perfect dental occlusion I still would have muscle spasms affecting my ears etc., at least for a while, and it is hard to to attain a good relaxed bite without also trying to relax the muscles via some form of therapy as the jaw will not relax for anyone to know where it ideally should be (seemingly part of why making a correct splint is so difficult). Most believe using the kind of splint you described makes things worse, for it is much too big and too stressful to the jaw, even if you can mould it to an extent to fit.
Yawning does affect my ears, I think because the jaw joint moves and puts different pressures or lack of pressure on the ears only a couple of mm away (this is my very scientific explanation!) I do know experiencing what you describe with yawning if one has TMJ or any form of tinnitus is very common. I don't know why your dizziness would mostly happen in the evneing, maybe because your body has become more 'tightened up' during the day when you have been moving about and awake?
Seeing a chiropractor could possibly really help you also if you have had back pain for some time, back pain could even be causing every other symptom you have. Perhaps a chiropractor or similar could try physical therapy addressing what they see in you and your symptoms as you describe them, it would be wonderful it that could help. It could also maybe help you if you get a book by Dr R. Uupgaard called 'Taking control of TMJ', which contains a lot of generally helpful info, even if you do not have TMJ, about helping yourself with muscle/fascia tightness.
I am struggling with changing, disparate symptoms also, I have been trying to read about all of this for quite a few months now, and still feel I am only touching the surface in a very general way and know very little. It does trouble me that doctors often do not give comprehensive information, if they know anything, thank goodness the internet does exist nowadays at least! I am impressed by your accurate recording of your symptoms and the research you are doing, and I really hope you find answers and relief very soon!
I post on the inner ear disorders board a lot, I won't go in to my history now, it's long winded, but just wanted to say another diagnosis you might consider is migraine. Migraine manifests in all sort of ways, can cause ear fullness and dizziness and can often 'hold hands' with tmj. Tmj is thought to be a migraine trigger. Migraine can also sometimes be mistaken for menieres. It doesn't always manifest as a straightforward hellish headache and can even cause sinus and nose symptoms. A brilliant book is 'Heal Your Headache' by Bucholz. (Can't remember his first name you'll find it if you do a search.)
Very sorry to read about your problems. Especially for such a young person. I have suffered with similar symptoms for more than 2 years and finally have some resolution. I would really recommend that you go to your dentist to get your bite checked. And you should ask the dentist to fit you for a night guard. Forget going to ********'s and getting it over the counter.
After 2 years of treatments with ENT's, neurologists, eye doctors, primary care doctors, Flonase, Zyrtec, Mectlizine, etc. I finally discussed my dizziness and fullness conditions with my dentist. He sent me to an orthodontist and together they have worked to get me relief for my bad bite. Since I have used my night guard (I use it during the day, too) my symptoms are almost 100% relieved. It takes a while (2 months) but each day you should start to feel more and more improvement. Just knowing things are improving really will help you.
I also have found an excellent ENT. A good ENT should be able to give you some simple exercises to do at home to help with your dizziness.
you live in boston....very lucky, you have the top neurotologist avalible
dr dennis poe, i traveled from va to see him, if you want your troubles sorted out hes the man to see. i will never be able to say enough what an excellent, brilliant dr he is....go!
Yes I have problems with sound sensitivity and light sensitivity also with my TMJ. Initially when the problems began I felt very "drunk" as I described it back then with a hyped up feeling and lots of anxiety which I couldnt understand. In "situations" these ever present symptoms created panic attacks. Anyway 1 year later I started to get ear/hearing related problems with a pitch variation in my left ear whic made music and speech sound really oddball. People talking generally was quite irritating. Its mostly subsided but it comes and goes in waves. When the irritation in the ear increases I feel a bit extra giddy then normal. I do have permanent dizziness of sorts related to TMJ.
I also developed some weird euastation tube/mucle spasm issue that felt like a flutter or vibration which drove me around the bend slightly.
I figured out that being outside on a bright sunny day made my painful eyes symptom worse although the heat from the sun beating against closed eyes felt good for the pain.
I dont get the TMJ painful jaw issue as most seem to here. I have constant painful eyes, sensitivity to light, an occasional irritated ear with sounds and constant dizziness.
All of the things you describe such as the dizziness, noise irritation, light sensitivity, full or blocked ears and pain in the eyes are all major features of my own TMJ struggle. I also have noises/ringing in the ears which changes when I move or pressure the jaw in certain directions. In the first two years the problems were compounded by anxiety which sometimes peaked and caused panic attacks. Along with this, depression can and will be present to a degree because of pain and confusion of all the weird symptoms. The anxiety is a false symptom bought on by the confusing initial TMJ symptoms.
Some of the false symptoms subsided after two years and I am left with very painful eyes 24/7 which have dark rings at times, irritated left ear where excess sounds make my feel more rotten, sensitivity to light such as being in bright sun too long makes my eye pain worse which later in the day make me feel more dizzy and rotten, and my dizziness is as you say more like the dizziness of having a fever also. So you are not unique and sounds very much like TMJ without the severe painful jaw issue.