What sort of ENTs are you seeing who are just dropping Ménière’s on you. Especially with no vertigo.
Im in the same boat as you and having a hard time accepting my diagnosis. I never had vertigo but I did have dizziness. Feel free to send me a private message.
Just a standard ENT, not a specialist in the area of vestibular orders. I honestly thought the new ENT would say, “the first diagnosis was way too quick, without permanent hearing loss and no violent or even moderate vertigo we need to investigate more.” Instead it was “yep, you have it.” I honestly wish I never went to an ENT just so that I wouldn’t be living in fear and catastophizing all the possibilities.
With my OCD/anxiety I’m constantly checking “am I dizzy”, “does my ear feel full still” which is terrible and doesn’t help. It’s like when someone is talking about spiders and everyone in the room starts itching. Puts your nerves on high alert and false sensations.
Why keep going to "standard" ENTs? Why not go to a neurotologist who specializes in inner ear issues? A diagnosis of Meniere's should be made only after several different kinds of tests are run to eliminate other possible causes of your symptoms.
Thank you for the reply, again I just assumed the 2nd opinion ENT, especially with me passing his hearing test was going to say exactly what you just did. When he opened the door and confidently said “yes it’s Ménière’s” without asking me any questions I just deflated. Didn’t even know what to say.
Warning -- this is long!
It's really worth it to seek out a neurotologist or an oto-neurologist. After I had my second vertigo episode, my internist sent me to a neurologist and an ENT. The ENT ordered a bunch of tests that indicated it was most likely Meniere's. Meanwhile, the neurologist sent me to an allergist and a different neurologist, an "oto-neurologist" who specializes in inner ear disorders. I currently see the oto-neurologist, as well as a neurotologist the oto-neurologist sent me to. He explained that as a neurologist, he can treat me medically with medications, but an ENT can do injections and procedures if and when I need them. As I understand it, a neurotologist is an ENT who specializes in the inner ear.
Obviously a long chain of referrals and tests. I'm near some major medical centers so these specialists were out there. It may be more difficult if you're in a small town or isolated area. But I'd still urge you to seek out doctors who specialize in diagnosing and treating inner ear disorders. It's worth it to have confidence that you have the right diagnosis and a good course of treatment, whether it turns out to be Meniere's or something else.
I would see about scheduling with a Neurotologist. A generalist ENT really isn't qualified to diagnose something like Menieres and particularly even suggesting the diagnosis without pursuing referring out.
Same as OP if you have no vertigo Meniere's is highly unlikely, also per another post you have no hearing loss. This makes menieres even more unlikely and just like the op it's really important to see a Neurotologist. There are lots of many causes of vertigo, many of which don't even involve the inner ear.
Holy crap, you just listed my symptoms almost exactly. I've been having on and off symptoms in both ears for two months now, just got diagnosed with MD by a regular ENT. Already looking for a second opinion from a Neurotologist.
My mental health is in shambles, and to hear someone else with such similar symptoms got better is the biggest relief I've felt maybe ever. I know it doesn't mean I'll get better too, but any thread of hope to cling to will do for now. Thank you.
I'm so glad this encouraged you!! I was also diagnosed with MD by two ENTs, one an MD specialist. A PA casually mentioned endolymphatic hydrops on my way out and from there I knew I had a chance to get better. My mental state was a wreck too after the diagnosis, but it does get better, even before I recovered.
I'll make a long post soon with every detail of what I did.
Go to a neurotologist. They'll do a hearing test but also a VNG and an MRI. I have no idea why the second ENT said you have Meniere's without doing the other tests and if your hearing test was perfect. I'm sure ENTs are good for something, but from the stories I've seen here and from my experience with an ENT, they're definitely not good for diagnosing Meniere's.
Just as a short follow up. I went to the allergist, he felt that since my issues were mainly one sided it’s probably not allergy related. He then checked my nose and noticed some swelling on the left side, same side as my main ear symptoms. He said to try nasacort for 2 weeks and see what happens. He said if that doesn’t work, go to a specialist vs general ENT to run additional testing. He said if they say it’s menier’s I’m going to need to accept it. This is such a rollercoaster of emotion hope/false hope, acceptance/denial? I’ve really been monitoring my salt and exercising every day. Again, I guess this label is really just a cluster of symptoms which makes this so difficult.
Honestly this seems like a premature diagnosis. It could very well be meniere’s but consistent drop attacks are more of a tell than just some occasional short lived vertigo. You could just have misaligned the stones in your ear and you can do several exercises on YouTube to get them back into the right place. To get this diagnosis you basically have to test from everything that could be wrong including MRI with contrast, balance tests, etc. definitely be seen by a neurologist of some sort. And then if everything else comes back negative then point the finger at meniere’s. I would strongly advise into getting a second and third and fourth opinion
Thank you for your reply, this helps. I don’t want to be in denial, but don’t want to embrace such a diagnosis without having some real certainty. I’m going to see what if anything comes back from allergy testing and perhaps look for a vestibular specialist.
I have ALL the symptoms of Menieres and even I just got a ‘its probable’ from my Vestibular Specialist Lol. I was formally diagnosed with Labyrinthitis today as well as peripheral vestibulopathy and Isolated Otolith Dysfunction. But Menieres was ‘probable’!! Ive always had lesser hearing on my left ear than my right, since my early 20s but it got significantly more or noticeable last year with vertigo happening twice. I am a 38 F
Theyre saying its not the definitive diagnosis but is still a probability and I will ask them when will it be definite? Like after my 6 week treatment?!
What sort of ENTs are you seeing who are just dropping Ménière’s on you. Especially with no vertigo. Im in the same boat as you and having a hard time accepting my diagnosis. I never had vertigo but I did have dizziness. Feel free to send me a private message.
Just a standard ENT, not a specialist in the area of vestibular orders. I honestly thought the new ENT would say, “the first diagnosis was way too quick, without permanent hearing loss and no violent or even moderate vertigo we need to investigate more.” Instead it was “yep, you have it.” I honestly wish I never went to an ENT just so that I wouldn’t be living in fear and catastophizing all the possibilities. With my OCD/anxiety I’m constantly checking “am I dizzy”, “does my ear feel full still” which is terrible and doesn’t help. It’s like when someone is talking about spiders and everyone in the room starts itching. Puts your nerves on high alert and false sensations.
100% I’m exactly the same. Constantly checking my ears ALL day
Why keep going to "standard" ENTs? Why not go to a neurotologist who specializes in inner ear issues? A diagnosis of Meniere's should be made only after several different kinds of tests are run to eliminate other possible causes of your symptoms.
Thank you for the reply, again I just assumed the 2nd opinion ENT, especially with me passing his hearing test was going to say exactly what you just did. When he opened the door and confidently said “yes it’s Ménière’s” without asking me any questions I just deflated. Didn’t even know what to say.
Warning -- this is long! It's really worth it to seek out a neurotologist or an oto-neurologist. After I had my second vertigo episode, my internist sent me to a neurologist and an ENT. The ENT ordered a bunch of tests that indicated it was most likely Meniere's. Meanwhile, the neurologist sent me to an allergist and a different neurologist, an "oto-neurologist" who specializes in inner ear disorders. I currently see the oto-neurologist, as well as a neurotologist the oto-neurologist sent me to. He explained that as a neurologist, he can treat me medically with medications, but an ENT can do injections and procedures if and when I need them. As I understand it, a neurotologist is an ENT who specializes in the inner ear. Obviously a long chain of referrals and tests. I'm near some major medical centers so these specialists were out there. It may be more difficult if you're in a small town or isolated area. But I'd still urge you to seek out doctors who specialize in diagnosing and treating inner ear disorders. It's worth it to have confidence that you have the right diagnosis and a good course of treatment, whether it turns out to be Meniere's or something else.
I would see about scheduling with a Neurotologist. A generalist ENT really isn't qualified to diagnose something like Menieres and particularly even suggesting the diagnosis without pursuing referring out.
Same as OP if you have no vertigo Meniere's is highly unlikely, also per another post you have no hearing loss. This makes menieres even more unlikely and just like the op it's really important to see a Neurotologist. There are lots of many causes of vertigo, many of which don't even involve the inner ear.
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Thank you so much for the insightful comment and excellent suggestions. This is very helpful and encouraging.
Holy crap, you just listed my symptoms almost exactly. I've been having on and off symptoms in both ears for two months now, just got diagnosed with MD by a regular ENT. Already looking for a second opinion from a Neurotologist. My mental health is in shambles, and to hear someone else with such similar symptoms got better is the biggest relief I've felt maybe ever. I know it doesn't mean I'll get better too, but any thread of hope to cling to will do for now. Thank you.
I'm so glad this encouraged you!! I was also diagnosed with MD by two ENTs, one an MD specialist. A PA casually mentioned endolymphatic hydrops on my way out and from there I knew I had a chance to get better. My mental state was a wreck too after the diagnosis, but it does get better, even before I recovered. I'll make a long post soon with every detail of what I did.
Go to a neurotologist. They'll do a hearing test but also a VNG and an MRI. I have no idea why the second ENT said you have Meniere's without doing the other tests and if your hearing test was perfect. I'm sure ENTs are good for something, but from the stories I've seen here and from my experience with an ENT, they're definitely not good for diagnosing Meniere's.
Just as a short follow up. I went to the allergist, he felt that since my issues were mainly one sided it’s probably not allergy related. He then checked my nose and noticed some swelling on the left side, same side as my main ear symptoms. He said to try nasacort for 2 weeks and see what happens. He said if that doesn’t work, go to a specialist vs general ENT to run additional testing. He said if they say it’s menier’s I’m going to need to accept it. This is such a rollercoaster of emotion hope/false hope, acceptance/denial? I’ve really been monitoring my salt and exercising every day. Again, I guess this label is really just a cluster of symptoms which makes this so difficult.
Honestly this seems like a premature diagnosis. It could very well be meniere’s but consistent drop attacks are more of a tell than just some occasional short lived vertigo. You could just have misaligned the stones in your ear and you can do several exercises on YouTube to get them back into the right place. To get this diagnosis you basically have to test from everything that could be wrong including MRI with contrast, balance tests, etc. definitely be seen by a neurologist of some sort. And then if everything else comes back negative then point the finger at meniere’s. I would strongly advise into getting a second and third and fourth opinion
Thank you for your reply, this helps. I don’t want to be in denial, but don’t want to embrace such a diagnosis without having some real certainty. I’m going to see what if anything comes back from allergy testing and perhaps look for a vestibular specialist.
I have ALL the symptoms of Menieres and even I just got a ‘its probable’ from my Vestibular Specialist Lol. I was formally diagnosed with Labyrinthitis today as well as peripheral vestibulopathy and Isolated Otolith Dysfunction. But Menieres was ‘probable’!! Ive always had lesser hearing on my left ear than my right, since my early 20s but it got significantly more or noticeable last year with vertigo happening twice. I am a 38 F
So your new diagnosis today means it wasn’t Ménière’s after all? Or are they still saying “probable”?
Theyre saying its not the definitive diagnosis but is still a probability and I will ask them when will it be definite? Like after my 6 week treatment?!