How often is Menieres misdiagnosed?

Get another opinion.

My early opinion is that most Meniere’s diagnoses aren’t worth much.

 

It's Menieres when everything else is eliminated. From your symptoms, you have Menieres. I had the same symptoms in the beginning only mine ended up worse with full blown nausea and vomiting 2-3 times a month.

See the 10 Point Test for Menieres post then look at The Cure For Menieres Attacks post in this Forum. The latter has a diagram of the flooding of the inner ear caused by Menieres which results in the fullness/pressure in your ears and your hearing loss. The vertigo is caused by the same flooding affecting your balance organ in the inner ear.

 

I was diagnosed yesterday, although I do not think the diagnosis is valid. I too am here searching for answers. I saw the ENT yesterday because I have been having what my PCP believed to be chronic sinusitis. The ENT took a look in my nose through a scope and checked out my throat and ears. He said other than some slight anatomical abnormalities of the conchae in the nose everything looked fine.

I described to him my symptoms as follows
Sudden onset of:

• Hot, flushed face
• Dizziness sometimes vertigo
• Pressure in my ears
• Pressure around my eyes
• Headache at the base of my skull
• General heavy feeling of the head
• Nausea

I do not have tinnitus or unilateral hearing loss.

He insisted that what was going on was not sinusitis, but ordered a CT scan to look at the sinus cavities anyways. He said the only thing that fit was Meniere's Disease. He prescribed me a diuretic, which I explained to him I cannot take due to being on a beta-blocker for sinus tachycardia, PACs, and PVCs. I told him to look at my blood pressure that the nurse took, which was 90/58. I do not need a medication that will further decrease my blood pressure as it is already quite low.

He also suggested prednisone, but again I explained to him I should not take it as it aggravated my heart issues.

I left feeling very frustrated and discouraged, and it did not help that he talked to me like a child and repeatedly asked the same questions. I'm in nursing school so I have general knowledge about the body anatomy, medications, and certain disorders. Not saying I know enough to diagnose myself, but I also know my body.

Any suggestions or advice?
What do you think about his diagnosis?

 

I am not a medical doctor. As nothing but a person who's been in this rodeo for the last year, I think the problem with most Meniere's diagnoses is that the doctor is doing nothing but giving you a label based on a range of symptoms. They don't even purport to know a cause. The causes differ from person to person. You're left in the position of having to do a lot of very hard work on your own to determine *your* causes. (Do not let the Meniere's label keep you from doing that. In a way, I think the diagnosis is not only unhelpful, but also damaging, as it discourages a lot of people from continuing to work to improve their situation.)

This board can be pretty useful for working your way through potential causes/treatments, giving you bases for trial and error. An excellent PT with a real vestibular specialty (there aren't many of them) that will spend some real time with you may help you nail down on your causes. You may find a doc that can spend that much time with you and have an open mind, but good luck with that. Their training and business operation is to see as many patients as possible and suggest prescription meds (which by and large appear to not work here) or a surgery (which seem to be hit and miss). It's not that they don't want to help. They just aren't wired/trained to deal with this sort of thing which takes a more holistic approach. JMO.

 

Jessi -- the four traditional markers of Meniere's are vertigo > 20 minutes, fullness in the ear, tinnitus, and hearing loss, notably in the lower registers. If you have all four of these markers and have ruled out other causes via MRI and other tests, then the symptoms are generally diagnosed as Meniere's.

I think doctors are often eager to provide answers to desperate patients, and a Meniere's diagnosis is often a catch-all when nothing else is obvious. Sometimes it fits, and sometimes it doesn't. I wouldn't rely too heavily on a diagnosis unless it was made by a neurotologist experienced in Meniere's.

You describe some symptoms that are not part of the typical Meniere's presentation (flushing, eye pressure, headache and heaviness), so it may be wise to keep searching for other/additional possibilities. You may have Meniere's plus something or not Meniere's at all. Get a hearing test. If it shows loss in the lower registers (fairly unusual), that would reinforce a Meniere's diagnosis. If not, see a neurologist to track down causes for headache, pressure, flushing, and other symptoms.

It sucks to be in the zone of no firm diagnosis; I hope you get it resolved soon. It's always good to know the beast you battle.

 

Tinnitus is different with each person. In my case, I hear a kind of buzzing as well as a high pitched noise. What struck me about your comment was that you don't have hearing loss but you initially said you were diagnosed 14 years ago. It seems unlikely that you would have Meniere's for such a long period with no hearing loss but I suppose it's possible. It appears you haven't been to a doctor in a while. Were any of your previous doctors neurotologists? If not, I suggest you see one as he or she might be in a better position to properly diagnose you.

 

Did they do an mri?

 

I'm going to clarify this comment. I don't know that I'd say Meniere's is "misdiagnosed" a great deal (though I think it is often MAV). It's moreso that a Meniere's diagnosis just isn't very helpful. It seems to me that it is basically just a label for a range of symptoms with no known cause. Whatever is going on with any particular individual has some cause (or usually causes), so you're best off to just keep digging trying to find what they are. This board can be helpful in that search.

 

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