Ear fullness/pressure/pain, dizziness, tinnitus, my diagnosis
Yes! As I said in my brief post before I finally have a diagnosis – tempero mandibular joint disorder. The relief of finally knowing what is wrong with me has only been a little marred by developing severe hyperacusis (now a lot better) the day before my appointment. Apologies, this post will be long, but I am hopeful that if I give out a lot of info it may help someone who comes to this board with similar symptoms to me and may be able to discover what is wrong with them.
Many of you will know that for the last 8 and a half months I have suffered from ear fullness/pressure, ear pain, tinnitus, dizziness, and now hyperacusis, and with clear hearing tests and ear pressure tests, ENT have treated me at best like ‘a mystery’ and at worst like someone who is either suffering from anxiety or making it all up. Thanks to my fantastic new dentist – (thank you, thank you Ulrika Jakobssen, you utter genius you) who spotted that all my problems could be caused by my jaw (despite having no jaw symptoms at the time) I was sent to the Eastman dental hospital in London and have finally been diagnosed with tempero mandibular joint disorder TMJD.
I had X rays done and was then in a total state in the waiting room, they had some kind of fan on and at this point anything that hummed was making my hyperacusis go crazy. By the time I got in there I sat through the entire consultation quietly weeping, embarrassing, but it had all just got too much for me. The consultant was very nice, of the terribly practical, straightforward, no nonsense variety. She reassured me it was fine to cry and I handed her a list of my symptoms. She asked if ENT had found anything, I said no, and she said that therefore all my symptoms fitted the tmjd pattern and a lot of their patients had these ear problems. She examined me, getting me to open my mouth (I have normal opening) and move my jaw side to side. Then felt various points in my mouth and asked if they hurt – no excruciating pain, but discomfort. She said that it was obvious from the exam that even though I didn’t feel pain as such, I was guarding against pain by being very careful how I moved my mouth – this is true, my jaw is tight if I extend it too much. She took me through my X ray and showed me that there was no jaw joint involvement – my jaw joint is sitting in the socket correctly, my problem is purely muscular.
I am being treated with a very small daily dose of nortriptyline – an old style tri cyclic anti depressant. They do not use it for depression but to relax the muscles and calm the nerves around the jaw joint which are in spasm. They are also making me a splint to wear at night to stop clenching and grinding.– there is a waiting list but I will hopefully have it in a few weeks. In the meantime I am using the NTI splint I got – I was worried it had made my tinnitus worse, I now realise it was getting worse anyway. I will see how it goes. There is tonnes of controversy around the treatment of tmjd, at the Eastman they only believe in ‘conservative’ treatments, they will not make splints that change the way your jaw joint sits in the socket – a re adjustment splint, as they believe this treatment is not well researched enough. As my problem is muscular this doesn’t apply to me anyway. Anyone who suspects they may have tmjd and wants to know about the various theories around treatment feel free to ask.
Obviously I am relieved to have this diagnosis, but shocked that my otologist didn’t pick it up months ago. If he had, I might have been treated sooner and never have developed hyperacusis. As I said in my last post, they get approx 3 patients referred on a week from ENT doctors at what the consultant told me is a very famous ear hospital down the road from them. This is not some off the wall, one in a million diagnosis, it is not uncommon to only experience ear and dizziness problems with tmjd. My jaw symptoms started at 7 months in and have so far never been severe. Some people never experience the symptoms in their jaw, all the muscular spasm/pain from the jaw backs up in to the ears. If you think you might have this, do not rely on your regular dentist to be able to diagnose you, dentists are not required to study tmjd in any detail to qualify and often say stuff that simply isn't true – i.e – you will have jaw opening problems, your jaw would be in severe pain – I have now seen an oral surgeon in a leading dental hospital who has finally confirmed those type of statements to be false.
Obviously I am still quite shaken up by my hyperacusis experience , wandering around in ear plugs, and terrified it may come back as badly as before. I still await an MRI ordered by ENT, and am still a little scared about that. I also still wonder if this could be a weird form of menieres that is going undiagnosed. (My otologist says it isn’t) By the way, just to reiterate, the symptoms of tmjd often mimic menieres – and there has been a study in Sweden showing that even if you do have menieres, menieres patients treated for tmjd can show great improvements. I have posted the link again below. If you do get a menieres diagnosis, there ARE things that can be done to help, being treated for tmjd could be one of them.
But on the whole, after months of horrible symptoms, it is an amazing relief to finally have someone take me seriously, acknowledge my suffering, send a letter to my GP telling them what I have and most importantly, treat me for it. By the way, even though I now have a tmjd diagnosis, I hope you won’t think it strange if I continue to come to the inner ear board. Obviously most of my symptoms are ear/dizzy related, and after all these months I would hate to lose touch with all the people I’ve got to know on here. And last, but not least, it's probably helpful to have a tmjd related ear disorder sufferer on here, just in case I can be helpful.
Apologies again for the long post, but I'm aware newbies come to the board all the time and thought it might help someone. I hope you’re all having a good weekend,
[This message has been edited by hbep (edited 05-04-2003).]
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I know what you mean about the relief to be finally believed and acknowledged that the physical and mental/emotional symptoms, of a disorder that's been plaguing you and changed your life entirely, is actually REAL.
I've always been amazed about that aspect of patient/medical profession.....why is it that it's so difficult to get a diagnosis?
It's even more frustrating for you to have symptoms that are seemingly obvious to be from the balance mechanism of the vestibular system, and it actually not being so.
I have never heard of the term hyperacusis. I looked it up on Google search engine and found there are a few sites of message boards. I know that when I have a severe headache, or my BPPV is symptomatic and my dizzy, "off", foggy feelings are constant, I tend to have sound bother me very much. I can't even imagine having hyperacusis.
What do you think has caused that? How is it related to TMJD?
I hope the medications help to relieve some of the jaw discomfort, etc...and that your new night splint will get you in a better aligned state.
I left you a response from the last question you answered enquiring about BPPV.
You have to visit here for a while yet to let all know how you're new treatment is going.
Best to you,
It's all a matter of perspective!
Thanks for your reply. Just to say if you experience problems with loud sounds seeming louder when having an attack you probably are experiencing a little bit of hyperacusis. Don't panic, if that's the way you've always experienced it, then it won't suddenly get worse, a lot of people get a little bit of it with an ongoing ear problem but it isn't an actual full time problem. Mine has only worsened because it's directly connected to an ongoing tmjd condition.
How is hyperacusis related to tmjd - well, in the same way all my ear symptoms are I guess. Although the mouthguard and drugs will (hopefully) relieve the muscular spasm in the jaw, I have virtually no jaw symptoms to speak off, virtually all the muscular problems created by my jaw are backed up in to my ears. For a full explanation see my new topic 'Medical info on how TMJD affects the ears.
It's actually really, really weird that it's a jaw condition I have because if it was only for what I currently experience in my jaw, a little bit of tightness moving it left to right, there's no way I'd even go to a doctor. I did have a short period of worse jaw symptoms but they resolved themselves quite quickly.
The hyperacusis is up and down at the moment, but thankfully so far has never been as bad as that first day. I'm still completely paranoid, because that was soooo bad.
And yes, again, I agree about doctors, there's quite a funny quote that someone always posts at the end of their messages on the tmjd site which is:
'Some doctors are only alive because it's illegal to kill them.'
[This message has been edited by hbep (edited 05-05-2003).]
thats great news. wow i'm definately going to follow down your route as a cause of my MAV. the only thing that i think can explain my ear pressure and fullness is the muscles spasiming. i just went and had my hearing and balance tests done. they were all normal, infact they said my hearing was excellent - she didn't think i had meniers. i can't quite believe how horrible the caloric testing and the armchair in the dark spinning tests was.
please keep us uptodate on how you are going.
i'm off to the cranial osteopath to have my inter oral massage.
Really glad the info is helpful, had started to feel a bit weird for banging on about tmjd and the ears, lol.
Kippers, so very, very happy to hear your tests went well. I was also told that my hearing was excellent. ( A bit too excellent a few days ago!) Also funny, considering it's absolutely all over the place bananas at the moment. I'm a nervous wreck, LOL (Well, I say, lol but it's slightly hysterical laughter.) I've read all about this on the tmjd board, hyperacusis one minute, diminished hearing the next, sometimes, insanely, both at the same time. With tmjd it's all muscle spasm, and it isn't permanent, but of course I just love to scare myself senseless with what if scenarios. I think I go through phases of being very panicked about it all, and this is the biggest yet. I'm trying to get a handle on it, but anything weird going on with my hearing seems to test my nerves to the limit.
By the way, Jen, the oral specialist I saw also mentioned phsyio for posture/back. She said they'd get back to me about it. (Excuse the pun) Waiting to hear. I know from stuff I've read on the tmjd board that some people think the whole condition starts in the back and this then impacts on the jaw. Of course a lot of people believe it works the other way round, problem with jaw first, then the back joins in. So many theories. There's also a lot of stuff dotted around the place on body alignment, i.e if things aren't aligned it triggers problems in nerves or muscles (Sorry, not that up on this, but it's something like that.) My guess, it's all mixed up together, back, shoulders, jaw, working on any of those areas is bound to help. As long as you're in the care of someone good it can't hurt, can it? Basically if they're prepared to give me physio for free I'm there, LOL. Very jealous of your intra oral massage, Kippers. Just wish I could find someone who did this in London. It's meant to be really helpful. The specialist at the dental hospital had no leads on this - they clearly don't use it, which is a pain. Apparently ultra sound and tens unit therapy is meant to be good too. I'm going to find out a bit more about this. Let me know what the intra oral massage is like.
Also Jen, I truly believe you can find the right splint to stop the clenching and grinding. There is a splint out there that will do it for you, it's just a matter of finding it. Hope the balance tests go ok for you. Think it will be a relief to know for sure it it's lab or not.
By the way, I'm not going anywhere in a hurry, LOL. I need this board.
[This message has been edited by hbep (edited 05-06-2003).]
[This message has been edited by hbep (edited 05-06-2003).]
went to the cranial osteopath. he didn't give me inter oral massage but did do some very strong stuff around the left side of my jaw. he said my pelvis was out and did stuff there and then my neck and then jaw. he is happy to treat me but said he's not sure if it will work. he had heard of my neurologist (used to be a nurse at big hospital) and said he was one of the best and a really good guy. he said he would definately go with his diagnoses of MAV. He said my jaw had a very funny way of opening my right side had no tension but left was very tense. this he thought could be cause by my fractured skull when i was 9, fell off my pony. i really liked him and i hope he will help. he said he has never treated symptoms quite like mine but that he will at least release any muscle and soft tissue tension. of course if mine is hormonal which i think it could be it will only help ease the symptoms not get rid of all of them. its interesting about all this physio, because when i was doing yoga every day, i would have the odd massage and they would always say they had never massaged anyone quite as soft as me, ie i had no tension anywhere - i definatley was never gung ho with my yoga so maybe its coming from my weird jaw and hormones, a mixture that has sent my nervous system out of control. osteopath did say my pelvis was out of wack which has a carry on effect up the spine into the neck. i suppose that old song the knee bones connected to the thigh bone... is very true.
I am going for my caloric tests etc on the 2nd June. I'm actually really nervous, especially about having water poured in my ears. it sounds like you didn't like the experience much! I absolutely hate getting water in my ears when I swim. It takes ages to drain and I hate that swooshing sound. Do you get that after the tests?
About MAV. Do you still have your wisdom teeth. I just met someone at the supermarket who had migraine problems for years. Just discovered that it was due to a wisdom tooth. Had it pulled out and was starting to feel a lot better.
It has always sounded like you're in the hands of someone v. good where your neuro is concerned. The whole pregnancy, hormone stuff related to MAV is clearly what your neuro is picking up on, and I'm sure he's good and sure he's right to. Obviously the tmjd diagnosis was so critical for me as ENT simply didn't know what was wrong. In your position I'd follow your neuro's advice and medication and I guess the tmjd stuff is just something worth knowing about if the MAV proves stubborn to treat, a sort of covering all bases, wholistic approach to the problem, as tmjd can contribute to a migraine problem. Anyway, an osteopath is definitely one of the things people try if they have tmjd, so you're half way there. You could always ask your neuro next time you see him about the full ears, now they've ruled out menieres, be interesting to know if he thinks this is part of the MAV thing, if he doesn't could point to a bit of a tmjd problem contributing to the MAV. I think in this case also, the knee bone connected to the thigh bone thing applies - a tmjd problem wouldn't mean a MAV diagnosis was incorrect, I think sometimes, as you say, the body can just get out whack and it's useful to have a few idea in your back pocket should you feel like approaching it in a different way. Should the problem persist, you could always pay a quick visit to a tmjd dentist, or dental hospital, I'm sure they'd be able to tell you pretty quickly if there's any tmjd aspect in your case.
By the way, I was wondering what made the person who did your tests rule out menieres. Be really helpful for me to know how they decide against this as a diagnosis (I can't seem to put this worry to one side at the moment.) Was it the clear ENG/caloric? Would they expect those tests to be abnormal with menieres? (I never had those tests as my dizziness wasn't of the MAV/lab type) Was it more the no hearing loss? Sorry for all the questions, but as I said in my last post, I'm in a panicky phase at the moment. Did the person who did the tests explain how they differentiate btwn menieres and a different diagnosis from those tests? I think I've just been really shaken up recently by all the weird hearing stuff going on for me. Although ironically hearing is better again and now v. dizzy. Sigh. I'm even thinking of making a private appt with the otologist I saw, arranging another hearing test and then grilling him as to why he thinks I don't have this. I think if I could just put this menieres thought aside I could 'relax' in to my tmjd diagnosis and focus on recovery. I guess i just got a bit freaked when I did some trawling around on the net, read some more stuff and realised how similiar the tmjd ear symptoms are to menieres.
Sorry for all the questions, by the way, how are you? Your symptoms? Hope you're ok,
[This message has been edited by hbep (edited 05-07-2003).]
[This message has been edited by hbep (edited 05-07-2003).]
Just a quick one, Jen, but I've read a few times on the net that it's possible to do the ENG or is it the caloric (?) with air blown in to the ears. Have no idea if it's as effective as water. Sorry, don't know any more than that, but you could always phone the clinic where you'll be having it done, check it out if water in the ears is a worry.
Mpaiment - no i haven't had my wisdom teeth out...ummm. and i do have 2 at the bottom that have broken through and are growing. i have asked about this because when i went to the horrible ent and he said nothing was wrong, his receptionist who obviously was trying to make me feel better said her daughter-in-law had vertigo and felt awful and then had her wisdom teeth out and felt better!!! so i asked my dentist and they took xrays and said it wouldn't be my wisdom teeth (but these are just regular dentists and i wonder how much they know about all this stuff). maybe i need to find a really good tmj dentist?. i just got private health insurance with extras so have to wait a bit to get the cover of the dentist part and then i might go and find someone good. thanks so much for your thoughts.
Jen I didn't have the water only the air. not sure about the water test? don't worry it did throw me but not for long and they are really nice. are you going to the University of Melbourne audiology dept??
Hbep - the audiologist wasn't really suppose to tell me anything, she just writes up all the reports and sends it back to my neuro who then interprets it and gives me the answers. she just said from what she saw she didn't think it was meniers. she said its very hard to diagnose so they just do all these tests to help paint a better picture for the doctor. the air blowing test (caloric) helps them see (i think) what all the inner ear fluid is doing. if you don't react then it maybe an indicaation of meniers, but if you do (like i did) then its inidicates some sort of normal range, but nothing is definate. the chair in the dark room, helps them see how your eyes react to balance. this is the one i found the hardest, i've always suffered from motion sickness (another MAV sign). she hadn't had time to see those results as that was the last test and we were running late. all the hearing was good. i know you must be worried but you really should go on the tmj slant - if someone thought you had meniers then i'm sure they would have said by now. i know when we feel awful and the nature of this disease is to make us all feel a bit depressed and down it doesn't help us be optomistic. i'm sure the muscle relaxant will help you alot but you may have to give it a few weeks. hang in there and i'm sure in a few months we'll all be laughing about this. then we can start a recovered health board.
have to go and take the boys to play group!!
ps sorry about the grammar and spelling i spent four hours awake last night with my youngest... just got my period and always feel worse just before and during but on the whole i think i'm getting better, or maybe just getting used to it.
Glad to hear that maybe I won't have water poured in my ears. I got that idea from this board.
I'm going to a place in Heidelberg West. I'm seeing places I never knew existed because of this condition!
I'll let you know how it goes.
Re: Ear fullness/pressure/pain, dizziness, tinnitus, my diagnosis
You all seem to have been at this for a long time and to be honest you seem more knowledgable then my GP!
I was sent to the ENT clinic last week with a diagnosed perforated eardrum by the GP. The ENT doctor disagreed and tested my hearing and did a test that I think blew air into my ear. He was testing to see if there was luquid behind my ear. It came back normal but the test itself made me very dizzy. I was wondering if any of you could shed some light... my syptoms are as follows:
My left ear has a constant dull pain in it. That pain can get very bad and shoot both down my neck and up to my tempral area. My ears feel blocked, like they could be full of water but I don't hear water in my ears or more like the feeling you get under water. Today I was in a lift and that made me feel really funny. The ears ring. Not all the time but for hours when they do. I am dizzy and my head feels full as well. Sometimes the riging is more of a tone then the kind that you get after you have been to a loud environment.
The doctor has put me on antibiotics for an ear infection just in case and nose spray to clear my nose. It just so happens that my left nostral is frequently blocked and I do get nose bleeds on that side A LOT. The only other things I can think of that might match some of your sypmtoms and might help you to help me is that sometimes if I shout then that feels funny in my ear/head and I go dizzy. I am a teacher and I do a lot of singing with the kids and there are certain notes that I hit and they send me dizzy and that makes the ear hurt worse. To me and my family these symptoms seem ridiculous, but after reading your posts I am confident that you kind hearted people will be able to help.
Thank you in advance for any advice and I hope that all of you are doing well or at least better.