Atypical Meniere's question

Specific Illnesses & Conditions Meniere's
1

Hi, The following quote appears on the main page of this web site - MAV is often misdiagnosed as Meniere’s Disease, Vestibular Neuritis or as a psychiatric disorder. A condition previously described, known as “atypical Meniere’s” is no longer recognised and is believed to be a migrainous vertigo sydnrome.

Since I’ve been told I have atypical MM (no hearing loss and the tinnitus isn’t all that bothersome) this quote, of course, hits home. I’ve been trying to find more about atypical MM no longer being recognized but can’t find anything. Can anyone lead to me to a spot where I can read more about this?

Tomorrow I have an appointment with my 4th doctor since starting this whole vertigo thing and I want to be ready in case he tries to tell me I have MM. (or maybe I do have mm and I’m in denial)

2

I thought meniers was when you got episodic attacks of crazy spinning vertigo and then were completely normal after maybe a day or so.

3

Meniere’s is very tricky. By definition, you don’t have to have all 4 symptoms(Fluctuating Hearing Loss, Vertigo, Tinnitus, Aural Fullness) to be diagnosed with Meniere’s. “Classical” Meniere’s involves all 4 symptoms, and usually involves 1 ear.

I have both MAV & Meniere’s, and my doctor actually classifies my type of Meniere’s as somewhat atypical. I have some minimal hearing loss at high frequencies, but it hasn’t really changed in the last several years. I’ve had a couple of full blown vertigo spells, but my condition is more accurately described as a battle with chronic disequilibrium (“rocking sensation”). I have some tinnitus, but not nearly as bad as many sufferers. Aural fullness is almost always present. All of my symptoms fluctuate.

The following link differentiates “classical” from “atypical” pretty well.

menieresinfo.com/symptoms.html

One of the big issues with “atypical” Meniere’s is that it can ultimately develop ito “classical” Meniere’s. By nature, the ailment is elusive.

Although not one single test can identify Meniere’s, the ECOG—if properly administered by an experienced technician in an optimal setting—comes close. At it’s best, it detects hydrops/fluid pressure build-up in the inner ear. I had a good ECOG done this year, and it detected hydrops.

menieresinfo.com/ecog.pdf

4

MSDXD, thanks for the info. What you are saying conflicts with what is said on the first page of this website (mvertigo). This is where I am confused. The quote I copied says atypical MM is no longer recognized and I am trying to find out where that comes from.

I don’t know all of your symptoms but like you I have heaing loss at high frequencies (but not real bad), intermittent full blown vertigo attacks, tinnitus but not as bad as most sufferers. I don’t have a rocking sensation but do have a constant feeling of motion sickness. I had one doctor tell me this is definitely atypical menieres and the same doctor tell me on the next visit it isn’t menieres. Seems the diagnosis anyone gets depends on the doctor you go to and his/her mood for the day.

What I am hoping to get is some backup information for this particular statement - “A condition previously described, known as “atypical Meniere’s” is no longer recognised.” Who no longer recognizes it - is there a menieres medical society or inner ear medical society that came up with this?
Thanks, BW

5

bookworm,

I tried doing some research to back that statement up, and I couldn’t find anything. I even went to the doctor who told me that if you don’t have all four of the meniere’s symptoms then you don’t have meniere’s website, and couldn’t find anything. So, all that I have for you is what a doctor told me. If it helps, he was at one point in time on the board that wrote the current definition of meniere’s.

BTW, high frequency loss is not part of meniere’s until the later stages. Low frequency loss is what happens first, slowly becoming worse, then moving into the upper frequencies until all hearing is gone. This is sort of one of the two symptoms that I have that is typical of meniere’s. The problem is that my hearing keeps returning to normal after a period of time. The fact that my hearing keeps returning to normal was one of the many reasons that I was told by the doc that I am refering to that is not typical of meniere’s.

It appears that what I found in my research is that it depends on what theory your doctor subscribes to. Kind of like some doctors now subscribe to the idea that migraines can be much more than a NASTY painful headache, not always requiring pain, but most still say, no pain, no migraine.

Brian

6

I think the biggest issue regarding the diagnosis of Meniere’s is that it’s diagnosed too often. Too many docs just jump to that conclusion when things don’t fit. It’s often a sort of default diagnosis.

From a more sinister side, there are some patients who think some otologists jump to that diagnosis because it’s a “money maker.” That is, expensive surgeries like endolymphatic shunt, vestibular nerve section, etc. I think there is some credence to that. I’ve heard of some docs who jump to surgery too quickly without exhausting other avenues first. Fortunately, I didn’t run into that with any of my docs. Since 2005, my file is around 50 pages. Exhaustive testing along the way. I had extremely limited contact with the medical profession prior to that.

Hopefully, although Meniere’s became an official diagnosis in 1861, increased & highly disciplined research is needed in a big way. In my opinion, considering that Meniere’s has a massive amount of mimics, the likelihood of misdiagnosis is high for myriad reasons. For more on mimics, go to:

menieresinfo.com/diagnosis.html#mimics

I was always hoping to escape the diagnosis, because the prognosis isn’t promising. My doc characterizes me as roughly 60% MAV & 40% Meniere’s with a pronounced palatal myoclonus and some cervical vertigo mixed into the fray as well. My etiology is both unfortunate and complex. In that vein, organizing and stratifying all of the ailments is very intriguing. I’ve given quite a bit of thought to it. I can see where one doc can set up the jigsaw puzzle differently than others.

Below is one of the best articles on Meniere’s ever written.

actaorl.com.br/detalhe_artigo.asp?id=7

7

MSDXD and Brian, what both of you are saying makes a lot of sense. From what I understand MM is a diagnosis after other things have been ruled out - rule out tumors, rule out strokes, rule out BPPV, there aren’t a heck of a lot of things that cause severe rotational vertigo, so doctors seem to come to that diagnosis pretty fast. If you present yourself to the doctor as being healthy except for the vertigo they are quick to assume it is MM. And from what I understand MM really isn’t anything other than a lack of anything else. Yes, it is a default diagnosis.

Brian what you say is so true and also so frustrating, it does depend on what theory your doctor subscribes to. There just doesn’t seem to be any clear cut answers to is it mm or mav or bppv or abc or xyz.

Atypical Menieres seem to be what they call a vertigo disorder that doesn’t fit the normal MM criteria. But instead of trying to find out what it really it, they just call it atypical mm, except there are some doctors who say there is no such thing as atypical mm, and they might call it MAV, but then there are the doctors who say there is no such thing as MAV and they will call it atypical mm.

Thanks, for the links MS, I’ve printed out the one on menieres to read later. Now I am going to go look at the mimics.

8

— Begin quote from “bookworm”

MSDXD and Brian, what both of you are saying makes a lot of sense. From what I understand MM is a diagnosis after other things have been ruled out - rule out tumors, rule out strokes, rule out BPPV, there aren’t a heck of a lot of things that cause severe rotational vertigo, so doctors seem to come to that diagnosis pretty fast. If you present yourself to the doctor as being healthy except for the vertigo they are quick to assume it is MM. And from what I understand MM really isn’t anything other than a lack of anything else. Yes, it is a default diagnosis.

Brian what you say is so true and also so frustrating, it does depend on what theory your doctor subscribes to. There just doesn’t seem to be any clear cut answers to is it mm or mav or bppv or abc or xyz.

Atypical Menieres seem to be what they call a vertigo disorder that doesn’t fit the normal MM criteria. But instead of trying to find out what it really it, they just call it atypical mm, except there are some doctors who say there is no such thing as atypical mm, and they might call it MAV, but then there are the doctors who say there is no such thing as MAV and they will call it atypical mm.

Thanks, for the links MS, I’ve printed out the one on menieres to read later. Now I am going to go look at the mimics.

— End quote

In retrospect, I think the best mode of attack is to find an interdisciplinary team of doctors who work together. Have a good GP who can work with both a good neurologist and a good neurotologist…nail all of the tests up front.

If I could do it again, I would’ve headed straight to The Cleveland Clinic —I live in Ohio—and had them hospitalize me for several days. I think they would’ve gotten me closer to a complete diagnosis much quicker. Then, I would’ve taken that data and fed it to a few other real good docs for second opinions. Discuss the results with all, and then move forward with a treatment plan.

9

MSDXD said
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I was always hoping to escape the diagnosis, because the prognosis isn’t promising. My doc characterizes me as roughly 60% MAV & 40% Meniere’s with a pronounced palatal myoclonus and some cervical vertigo mixed into the fray as well. My etiology is both unfortunate and complex. In that vein, organizing and stratifying
— Begin quote from ____

— End quote

I was so surprised to see the statement you made about haveing some cervical vertigo mixed into the fray as well with your diagnosis. I cannot tell you how many medical professionals have told me that cervical vertigo does not exist. I was once told by a well respected physical therapist and head of the PT Department at the University at Buffalo, who has been my PT for years now that she suspects that I have cervical vertigo. However, when I went to two other doctors for assistance with it early on, I was told there is no such ailment, and it may be either migraines, Meniere’s or my heart. I know I have read about it in some literature, sometimes I think some doctors simply want to avoid treating us because they do not know what to do for us and use different excuses. So they pass us on to other physicians. My massage therapist also thinks I suffer from cervical vertigo. So what do you do for it?

I know exactly what you mean about the Meniere’s prognosis. Everytime anyone mentioned that to me, and that was the one that was mentioned the most. So much so that I was afraid to have the test you needed to eliminate it. I truly did not want to hear that it may be positive and I can sympathize with you as to why we do not want to live with it. I cannot believe that there is so little that can be done to help the poor Meniere’s sufferers. Vertigo is torture enough, but combine the other symptoms and I cannot imagine, well I can somewhat, it is hell on earth.

How are you being treated for such a complex combination? A low sodium diet, no MSG, something for your migraines, and for your vertigo I would imagine, correct? How are you coping? One final question, did you suffer from migraines or other chronic problems before all of this started?

Karen

10

Dr Hain article on Cervical Vertigo…

dizziness-and-balance.com/di … vical.html

11

— Begin quote from “KarenS”

MSDXD said
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I was always hoping to escape the diagnosis, because the prognosis isn’t promising. My doc characterizes me as roughly 60% MAV & 40% Meniere’s with a pronounced palatal myoclonus and some cervical vertigo mixed into the fray as well. My etiology is both unfortunate and complex. In that vein, organizing and stratifying
— Begin quote from ____

— End quote

I was so surprised to see the statement you made about haveing some cervical vertigo mixed into the fray as well with your diagnosis. I cannot tell you how many medical professionals have told me that cervical vertigo does not exist. I was once told by a well respected physical therapist and head of the PT Department at the University at Buffalo, who has been my PT for years now that she suspects that I have cervical vertigo. However, when I went to two other doctors for assistance with it early on, I was told there is no such ailment, and it may be either migraines, Meniere’s or my heart. I know I have read about it in some literature, sometimes I think some doctors simply want to avoid treating us because they do not know what to do for us and use different excuses. So they pass us on to other physicians. My massage therapist also thinks I suffer from cervical vertigo. So what do you do for it?

I know exactly what you mean about the Meniere’s prognosis. Everytime anyone mentioned that to me, and that was the one that was mentioned the most. So much so that I was afraid to have the test you needed to eliminate it. I truly did not want to hear that it may be positive and I can sympathize with you as to why we do not want to live with it. I cannot believe that there is so little that can be done to help the poor Meniere’s sufferers. Vertigo is torture enough, but combine the other symptoms and I cannot imagine, well I can somewhat, it is hell on earth.

How are you being treated for such a complex combination? A low sodium diet, no MSG, something for your migraines, and for your vertigo I would imagine, correct? How are you coping? One final question, did you suffer from migraines or other chronic problems before all of this started?

Karen

— End quote

Cervical vertigo (aka “cervicogenic”) is controversial. Dr. Hain’s description coverage on his website is excellent. For me, physical therapy is the best mode. It’s worked well for me.

MY PT was extremely sharp. She was always a step ahead of me. When I first saw her, she was skeptical that I would improve much. After a few months, she released me. Improvement was more than we both expected. Didn’t have to come back anymore. To be sure, I have to do the exercises every day at home. As my doc said (paraphrase), “Even when you’re done with P.T., you have to continue doing the exercises daily. As they say, ‘use it, or lose it’.”

Meniere’s. Low sodium diet. I don’t take the diuretic. I use parsley instead. Low doses of valium. Valium is also used for the palatal myoclonus, although it’s more effective for Meniere’s. I take some supplements as well. 2,000mg of Vitamin C daily with lipobioflavonoids. I also use vinpocetine.

MAV - 240mg of Verapamil daily and low dose Effexor (37.5). Have to watch my diet very,very carefully as well. Lots of foods trigger it. MSG is the big one. No Chinese food, etc., for me.

I’ve made massive strides in improvement, especially since this summer.

12

MSDXD:

I hope you and everyone in the forum had some lovely holidays, and that we all managed to stay well despite all of the holiday food that surrounded us. Thank you for your reply regarding cervical vertigo. The only assistance I have been getting lately for mine is through massage therapy. She has a physical therapy background and full understanding of the vestibular system, so she is wonderful, but I am not aware of any exercisess that I can do at home. Unless you are referring to the one that involves standing back against the wall and lowering chin to chest slowly , then back up again 10X. I believe that is the only one I was shown.

Also, don’t you find that you have to avoid many types of food: migraine triggers (caffeine, MSG, pizza, yeast, sulfites) AND Meniere’s triggers ( high sodium, canned foods )?

Thanks,

Karen

13

— Begin quote from “KarenS”

MSDXD:

I hope you and everyone in the forum had some lovely holidays, and that we all managed to stay well despite all of the holiday food that surrounded us. Thank you for your reply regarding cervical vertigo. The only assistance I have been getting lately for mine is through massage therapy. She has a physical therapy background and full understanding of the vestibular system, so she is wonderful, but I am not aware of any exercisess that I can do at home. Unless you are referring to the one that involves standing back against the wall and lowering chin to chest slowly , then back up again 10X. I believe that is the only one I was shown.

Also, don’t you find that you have to avoid many types of food: migraine triggers (caffeine, MSG, pizza, yeast, sulfites) AND Meniere’s triggers ( high sodium, canned foods )?

Thanks,

Karen

— End quote

Hi Karen:

Hope your holiday was a good one as well.

My P.T. started me on that exercise along with others, and it helped. From that point on, she put me through a very extensive program…so many exercises…she was always a step ahead of me. I’ll try to go through some of my notes, compile as much as I can, and P.M. you tomorrow or Thursday.

Foods are indeed a major trigger. All that you named will hit me. The MAV/Meniere’s combo requires a lot of discipline. I did a lot of experimenting after I was diagnosed with MAV in August 2007. Almost all of the MAV food triggers hit me, but a few (chocolate), didn’t have as big of an impact.

Some triggers hit me the same day, some hit me the following day.

The most intriguing experiment was alcohol. I was never a big drinker, but before this hit in early 2005, I’d have a few beers here and there…some wine a few times per month. I probably averaged about 4-6 drinks per month. Rarely drank hard alcohol.

After the 2007 diagnosis, the experiment I did was over a 2 week time span. I drank some red wine one night. Hit me quick. Increased pressure & disequlibrium…ouch. A few days later, drank a few beers. Not as big of a hit, but it did set off MAV symptoms. The next week, I drank some vodka. No MAV hit. The docs are right about that.

14

— Begin quote from “KarenS”

MSDXD:

I hope you and everyone in the forum had some lovely holidays, and that we all managed to stay well despite all of the holiday food that surrounded us. Thank you for your reply regarding cervical vertigo. The only assistance I have been getting lately for mine is through massage therapy. She has a physical therapy background and full understanding of the vestibular system, so she is wonderful, but I am not aware of any exercisess that I can do at home. Unless you are referring to the one that involves standing back against the wall and lowering chin to chest slowly , then back up again 10X. I believe that is the only one I was shown.

Also, don’t you find that you have to avoid many types of food: migraine triggers (caffeine, MSG, pizza, yeast, sulfites) AND Meniere’s triggers ( high sodium, canned foods )?

Thanks,

Karen

— End quote

Sent you a P.M.

15

Thanks for your reply and all of your help, again. When you mentioned your experiment with different food triggers it reminded me of how I reacted to a couple of my triggers long before developing my first migraine. I always loved Chinese food, even as a child. Then as a teenager, I started to get an upset stomach from it everytime I ate it and eventually felt ill immediately after eating it as an young adult. Wine always gave me a headache as soon as I had the first sip, and ham eventually made me ill the following day as an young adult. All of these were apparent long before my first migraine hit. Now I know why! I miss pizza most of all, though. Just one slice would cause a spin the next day without fail. I gave up testing it a year ago, because I am simply too afraid to now. And, just as you said, chocolate does not seem to bother me. I do not eat much of it. It is only in cookies or brownies, and the “safe” desserts, I rarely eat chocolate bars, but I do not have to eliminate it like I have to eliminate MSG, yeast and so on.

I strongly suggest keeping a food diary to anyone who is new, so they can determine what their triggers are and ultimately have fewer episodes.

Karen