Hi - new here. I just saw another ENT yesterday and I was hoping some people would provide some better insight than the doctors have been seeing over the years. So ever since I was in my teens (I am mid-thirties now) I have been having issues with my right ear. I have had this undying pressure in my right ear for twenty years. The pain isn't horrible (though sometimes it can be sharp, but not consistently), it is just unending and horribly annoying. The pressure fluctuates. Sometimes it feels like I am underwater, and sometimes it feels like it is draining, but I am always feeling something. I have intermittent issues understanding what men with very low tone voices are saying. I have to sometimes read their lips and with COVID-19 mask era, I just nod my head and walk away because I have no idea what they are saying. It's like the Peanuts teacher. I can hear them making noise... but none of the sound makes sense. Sometimes it isn't as bad and I can understand the words, but this is very inconsistent. I can understand women and men with mid range voices just fine. I get tinnitus in my right year intermittently as well. Some months it is just horrible, and there can be long periods of time where I will just have it maybe once or twice. The first time I went to see a ENT as a teenager, he said I had issues hearing low tones for such a young age... and that it might be a tumor because I was so young with the problem. But I never followed up with him because I was scared of knowing I had a tumor. The second time I went in my twenties I was told I have some pressure issues and I have Eustachian tube disorder, but when I did a follow up the next week my pressure was fine and they decided to do nothing. Then I went again in my later twenties and the guy just thought I was nuts (he didn't say this, it was just they way he reacted to me coming in) because my tests came back normal. I was upset because they had a women do the audiologist screening and I told them I have no problem hearing women. So about three months ago I was getting randomly dizzy. I would be laying down or standing up, walking, leaning over, etc. It was weird for me, because I performed for several years as a sustained spinner/dervish in my late twenties, and I don't get dizzy ever. But the vertigo does not last for more than a few minutes at a time, and I haven't experienced it in about a week. I saw an ENT again yesterday and my low tones I definitely struggle with, but it is still within their "normal range" (it was borderline). There was a difference in my ear pressure from my right to left, but within normal ranges. The doctor thinks I have Miniere's Diease, but I have to go in on a bad day to prove his theory. My left ear feels perfectly normal, so I know there is something wrong with my right ear, I just don't know what that is. I keep on passing ENT testing so they won't do anything further than a hearing test. I seriously am at the point where I just want them to destroy the inner and middle ear completely so I don't feel pressure on that side even if I am permanently unable to hear on that side. I also want to mention I do have TMJ on that side, but my oral surgeon said he didn't think it was affecting my ear. I am going to try low sodium... but I am a vegetarian already have don't eat much sodium at all anyway. I have low blood pressure, so I don't want to take anything that would lower my bp. I haven't tried magnesium. Anyone have two cents for me?
Hello and I am sorry about your illness and that you have ended up in our "club". It's ironic how every doctor who has seen you has diagnosed something different. In any case, the first thing you should do SOON is an MRI and confirm or rule out the tumor. The worst attitude to a suspected cancer is not to look at it out of fear. The second thing you should treat is the TMJ, even if your dentist says what he says, there are cases and it is one of the few medically recognized causes that Meniere can produce on the date, so you have to start by discarding this type of thing that you know you have before to try other adventures. A low-salt diet won't do you any harm because it's generally healthy for your whole body, but rule out the tumor and TMJ first. There is no point trying other things first just because we like them more or make us less afraid. When you discard that, come back here and try other things not recognized by doctors that we are all trying (Antivirals, JOH, etc). Greetings and good luck.
How does one go about getting an MRI without a doctors sense of need to do it? Do I just push hard for it?
I've been seeing Meniers more and more these days as a "catch all" phrase. The three necessary "ingredients" are A fullness in the ear, hearing loss on the low end and vertigo. You apparently have all three. Congratulations.... Like you over the past 20 or so years I have been diagnosed with all sorts of things, estacian tube disorder being one. They usually ended up just calling it "idiopathic hearing loss" which stands for "We have no idea". When it first hit me the ENT said he could cut the nerve to my inner ear. Yikes. Glad I didnt go for that. For the last 20 years I have just learned to live with the incessant ringing and fluctuating hearing loss. But when the vertigo and dizziness finally showed up it became a whole different ballgame. Now I'm taking it a lot more seriously. After two MRI's an extensive hearing test I was finally diagnosed with Meniers. Yipee. Now I'm trying every remedy I can find, most discovered here on the forum, and thus far have kept the vertigo and most of the dizziness at bay. That's my goal. I know my hearing loss and fullness is here for good but it's the vertigo that make life unbearable. Check out John from Ohio's regime. I think it works. Also check out some of the chinese inner ear herbs. I think they work too. (Inner Ear Balance IEB9, Accending Clarity, Clear Sinus and Ears. All found on Amazon) I really think that by working on that inner ear fluid buildup (the endolymphatic) we can help keep the vertigo at bay. I really think that's where most of the problems lie.
You are the first person I know to be diagnosed with Meniere without first having an MRI. Tell him what you just told us: That 10 years ago they told you that it could be a tumor and that they did not do an MRI and that you would like to do it to be calm and by the way, the MRI is used to rule out other possible known causes they are not Meniere.
I have been to two ENT's. The first one was about 30 years ago. The very first thing he ordered was a MRI. After that and other tests he concluded that I was a "classic" menieres patient and he could not do much about it except diuretics. This went on for years and years and eventually the vertigo increased so about 6 years ago I went to my second ENT. The first thing he ordered was a MRI and after other tests he stated " I have been an ENT for 30 years and I can tell you that you DO NOT have Menieres". I asked him what I had then and he did not know, could be a lot of things. Last year I went to University of Washington and after a balance test and other tests the Doc said it was ear related. Back to square one. I am now trying B5 B6 and some of JOH. My point being your ENT should order a MRI to rule out tumors. Just my two cents worth. Good luck. PS: I am now 76 years old so Menieres won't kill you but can be very uncomfortable. Keep
My suggestion is to find an neuro-otolaryngologist. An "oto" is trained in vestibular disease unlike an ENT. Most ENTs have no clue as how to treat menieres. You will learn more on this website than most ENTs will ever know about the disease. And as stated above you need an MRI.
Now I have doubts, my ENT told me that I had meniere and told me that they will call me to do a vestibular study. But he was precise saying that I had Meniere and that the study was only to see how damaged my ear was and to propose a treatment (I imagine between pills or injections). My question is, could something still appear in that vestibular study that indicates that I do not have Meniere like Weeba?
"You will learn more on this website than most ENTs will ever know about the disease." Unfortunate but...Very true.
Coming back with a follow up. I had a MRI at the beginning of the month and a VNG today. MRI came back normal. No tumors. Cochlear hairs normal. I found out have a common brain development issue incidentally, but nothing that has to do with my ear issues. VNG came back "to confirm Meniere's disease", but I am really not convinced I have Meniere's... I think I have auditory neuropathy of some kind. Reason being earlier this month I had experienced occipital neuralgia for the first time. It was this burning stinging tingling sensation up from the back of my left side of my head (not a headache). It was the weirdest sensation, but this tingling sensation is EXACTLY the same feeling in my ear all the time beyond the fullness feeling. And it was like a lightbulb. I definitely have some kind of nerve damage going on. To be fair, I havent had my TMJ addressed yet. I will update once I address it. Anyone have the vng test before? So when they did the lying down air pressure test today, I was completely unaffected by the test on the right and significantly dizzy on the left. I am going to request my neurologist does the abr test since this ENT seems to think case closed, and she is much more open minded to exploratory testing.
Yes, I had one about two years ago to diagnose a migraine issue. The ENT said I had Vestibular Migraines. I don't recall getting dizzy, but apparently they watch your eyes and look for a reaction.
I agree with IvanA... I recommend putting high priority on TMJ, as the same cause can result in both TMJ and Meniere's. Not every dentist is an TMJ expert, and the number of dentists who can give right treatment for hearing loss or vertigo is limited. It is not about a relief in temporomandibular joint or a night guard, but it is about three-dimensional balancing in the tooth, mandibule and sphenoidale and self help to completely remove bruxism. I didn't have TMJ, but I had a complete relief with mandibular repositioning by a TMJ expert. I can recommend searching a dentist who has a proven track record in neuromuscular orthotic or addressing TMJ patients with hearing loss or vertigo. The following list of GNM experts might also help. DENTAL GNM EXPERTS
I agree with Redwing. Stop wasting time with an ENT. Find an Otoneuro. ENT’s only know steroids, diuretics and loso. After that they are done.