I know this sort of belongs on a different forum but this one is home for me.
I sometimes wish that I would get spinning vertigo, only so that I could attach names and say, “this is definitely what is wrong with me.” I have been having dizzyspells/attack lately that make me think they may be meniere’s and not MAV. No spinning vertigo ever, but with these attacks, my hearing changes, the tinnitus becomes like a seashell hooked up to a PA system set on max, everything becomes muffled, and I become very sound sensitive.
Here’s the thing that gets me. The hearing tests keep showing varying levels of loss, sometimes no loss. They also show that I should not be having problems hearing people because the frequency range is no where near the human voice. Yet, during one of my spells/attacks, I frequently mis-hear people. Over the telephone, or headphones of any type, everything sounds like static. I just spoke to my mother-in-law and I could of swore it was my nephew. I had to go by the caller ID to identify that it was a lady I was talking to. Men on the telephone is just a waste of time, I can understand about half of what they say. When the sound comes to both ears instead of being isolated, I can hear “almost” OK, no static, no distortion, and I can understand “most” of what is being said. I try to explain what things sound like to the docs and the hearing technicians only to get weird looks of non-understanding.
Here is the EXTREMELY frustrating part. I don’t fit into any “pre-cast” mold, I don’t match any of the definitions for “what ever,” so everybody except my wife says that I can work.
I guess I just need to go back to work and let myself actually get hurt when I fall. After a few workman’s comps cases, they won’t want to employ me. I also need to stop chasing off the people that want to call an ambulance for me when I take a fall. Maybe a few ambulance rides on my records would make the government think differently.
I sometimes wish that I would get spinning vertigo, only so that I could attach names and say, “this is definitely what is wrong with me.” I have been having dizzyspells/attack lately that make me think they may be meniere’s and not MAV. No spinning vertigo ever, but with these attacks, my hearing changes, the tinnitus becomes like a seashell hooked up to a PA system set on max, everything becomes muffled, and I become very sound sensitive.
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Brian,
I have mav not menieres,
These hearing symptoms you describe are the same symptoms as when I have a migraine.
it must be very confusing to the Dr’s as well.
I agree let them call the ambulance, they’l get the message that youre too sick to work.
I am so sorry they don’t get that you can’t work - that’s awful. I didn’t work for the first two years - had to do a government medical to get incapacity benefit. I think the letters I had from the specialists probably helped. Has your specialist been unhelpful? It’s mind boggling if they understand the extent of your condition that you are required to work.
I think you’re right too. Let them call an ambulance. I think I might be inclined to go back to work clearly unable to do it and simply lose the job through ill health - that would ram the message home.
I don’t get hearing changes of the severity you describe, however during bad phases I had incidents where my hearing diminishes. I suddenly have to listen to television at twice the volume. I can also become hyperacoustic - sometimes simultaneously which is strange. My tinnitus also gets louder. I have severe photophobia, so I definitely have MAV, although have asked about menieres before now due to these symptoms. My hearing is always normal during hearing tests.
I’m not sure if you noticed but I opened a Meniere’s forum here 2 weeks ago. I’ll copy this post over there too. The gang over there will probably have some good insight into this for you too.
hi brian,
i have meniere’s and not mav. some of what you describe is similar to what happens to me but most of it still sounds like what i’ve read most mav’ers describe. as far as the hearing tests, are the losses in the low frequencies? i know you said it fluctuated but if the lower frequencies are still staying somewhat consistently “down,” that might be a clue. i have a severe loss now in my affected ear but understanding men with deeper voices has always been very hard for me.
there are people are diagnosed as atypical meniere’s because they do not have the vertigo. have you been to see a neurOTOgist. the ‘oto’ part meaning they specialize in the inner ear. they can run some tests that may help clear this up. there is one eng (calorics) test where they alternately put warm and cold water in your ear to measure the balance nerve function. this test is not pleasant but can be very telling. if your balance nerve is fine, you will have vertigo for a few minutes. it sucks but it’s a good sign. the last time i had it done, when they put the water in my left ear, there was very little response. when they put it in right ear, the room spun like crazy. some oto’s will also do an ecog. it’s a good test but some debate its reliability.
the key for meniere’s is to really track your hearing. if it is meniere’s, your hearing will fluctuate but will ultimately decline beginning in the low frequencies and in the late stages affecting all frequencies.
i know it’s frustrating not having a diagnosis. i hope you find some answers soon!
nicki