meniere's caused by a virus-please read

Thanks.

So in some people, MM could be a labyrinthitis that does not self heal or MM could be a labyrinthitis that affects a part of the ear that results in low frequency loss rather than high frequency loss. I am not postulating that it is, just looking at some possibilities.

I have low pitched hearing loss and it seemed like from the minute the dr's saw the audiogram they were zeroing in on MM or AIED.

 

A virus is sometimes the cause of Menieres. The antivirals should always be tried. In my case, we know the cause and antivirals do not work. However, like I said, try all avenues.

 

Yes, this is correct. I think there is a distinct possibility that some folks diagnosed with MM actually have some sort of semi-permanent labyrinthitis in their inner ear. This could be due to permanently resident viral particles that flare up or it could be due to complex immune system malfunctions, including autoimmune.

I strongly suspect that the variations in symptoms, both in severity and types, are due to differences in the details of how the various tissues of the inner ear have been affected by the disease processes. I do not think MM is a single process. I think those who have been diagnosed with MM share symptoms even though underlying mechanisms may differ.

I had to wait 9 months to see if labyrinthitis caused my symptoms before I was diagnosed with MM. I have mostly high frequency hearing loss and had persistent dizziness punctuated with episodes of vertigo. I've always wondered why I was diagnosed with MM despite these non classical features. Recently, I started to suspect that I've always had some sort of immune system issues that whacked my ear.

Joe

 

Just curious, but all web material I have read indicates that labyrinthitis is a virus of the inner ear...so why is it that anti-virals are not prescribed even for that?

Also, a different question...if someone is helped by the low-salt diet, does this mean that their Meniere's is not likely to be viral in origin?

 

Thanks Tucker. I know many people on here slam me for expressing my opinions/beliefes, but, deep down i know there are many on here who see things exactly as I do.

 

I wouldn't say it's negativism from Nassman. I would say he tells us the facts, not what we want to hear.

 

Holy moly! Sorry ya'll! I posted the mm/virus connection thread the second I got home from my appt yesterday, based on information my doctor told me, in hopes that the info may help some on here. As there are so many disorders that mimic mm, and varying levels of mm and it's advancement, and most likely not every single person on here has a full blown case of mm, this info will obviously not help everyone. I believe my doctor was postulating that they are leaning towards the mindset that a virus is the primary cause of mm, though that may not mean that every single case is absolutely derived from a virus. It's one of the most complex and bewildering disorders out there, and I'm sure it will take years, if not decades, before someone can say with 100% certainty what the true cause of mm is. It will be very interesting to see the study and exact results that my doctor was referring to.

I did not mean, however to start an ongoing battle, or have a new users (auntlisa) thread hijacked. Everyone is different, and not everyone will respond to the same treatments the same way. For me, salt has zero effect. For some, steroids work, for others, not so much. For some, the shunt works, for others, not at all. The antivirals may not work for everyone, unfortunately, but they have clearly helped some, which is great news.

My intentions were only to offer some positive, interesting news, and hopefully give people something to think about or try, if they haven't done so yet. I'm not the expert, and will never claim to be. I have no idea if the antivirals will work long term for me either. I'm not claiming that antivirals are the solution to all of our problems on here. I was only reiterating info that was told to me, that I thought some on here might like to hear. Perhaps if doctors do one day conclusively agree that a virus is the mm culprit, maybe they will come up with an even more effective form of treatment than antivirals. Who knows? I just hope that they continue to head in the direction that will bring everyone relief.

I've always enjoyed reading posts on here about others finding relief, and how they found it. My hope is that everyone on here finds a way to feel better, sooner rather than later, through whatever method works best for them. I'm definitely not trying to tell people "what they want to hear," only important info that I came across from a medical professional, and what has so far helped me. I hope that everyone else on here has the same positive intentions. I think it's good to have dialogue, and to think critically about things, but there are also appropriate, mature ways to approach that dialogue.

As Nassman just wrote that he is expressing his "opinions/beliefs", not necessarily facts, it made me realize that most people here are simply expressing their "opinions/beliefs" on what's worked/not worked for them also. We all have experiences/opinions/beliefs to offer and share, and all of those ideas should be treated with respect.

Happy Wednesday.

 

Bingo!

 

Trust me on this Skye76....You didn't start anything.

Sometimes you just need to stay in the back ground and watch.

 

Some of us had symptoms, including vertigo, that started immediately following a sinus infection or other respiratory infections, and I am one of those. Salt has absolutely no effect on my symptoms. Does this make folks like me more likely to fit into the virus category than those who get relief from MM with lo so and diuretics? Just wondering.

 

What I find curious about this then, is why do not these specialists routinely rule out labyrinthitis by rxing an antiviral at the start similar to the way they give prednisone a try to see if it might respond? If it works, call it viral labyrinthitis if not, plan b. In my case, even when I reported success with antivirals neither of 2 very well qualified oto's said 'oh my gosh, I guess it is labyrinthitis not hydrops' In fact they both said, still most likely cochlear hydrops. Or is it cochlear hydrops caused by viral labyrinthitis? The only reason I can think of is that the article I posted on labyrinthitis listed a whole bunch of possible causes for labyrinthitis of which virus is but one. In fact does labyrinthitis actually serve as a synonym for MM? Wonky ear, probably something pushing it out of shape ...I think as patients we are too into the idea that there is A Meniere's Disease when in fact since it can't be confirmed by testing I think that is a stretch and the more I talk to specialists the more I am not sure they are of that point of view that there exists a one true Meniere's.

 

Then you don't have meniere's. I cannot understand why people find it so difficult to understand that just because you have vertigo doesn't mean you have meniere's. In your case, your vertigo started because of a bad sinus infection (something that is known to cause vertigo/dizziness) not menieres.

If people want to understand others that have real menieres take a look at forumers like Linda, Joanne (the lady who had the successful VNS), and Jenny. All 4 classic symptoms, no virus/herpes, no known cause.

 

The effect of salt on MM symptoms has no diagnostic value whatsoever.

Joe

 

A qualified doctor WILL prescribe an anti-viral if labyrinthitis of viral nature is suspected. VEDA even endorses this.

http://www.vestibular.org/vestibular-disorders/specific-disorders/labyrinthitisvest-neuritis.php

 

No. I wish it were that simple. Labyrinthitis simply means inflammation. I think it is possible to have MM symptoms without having an inflammation.

MM is not a beast; it is a herd of beasties.

Joe

 

Clearly all we can do is speculate. Its possible that a virus,not just herpes,could cause damage that renders the ear sensitive to sodium etc. Also after a viral attack an autoimmune disorder could result.
Its catch 22 that if we identify a cause that its not mm...innit?
g

 

BTW i used to have all 4 classic features but now dont have the vestibular stuff...do i no longer have menieres? Also, it years for all 4 to show up.

G
peace

 

<<<I strongly suspect that the variations in symptoms, both in severity and types, are due to differences in the details of how the various tissues of the inner ear have been affected by the disease processes. I do not think MM is a single process. I think those who have been diagnosed with MM share symptoms even though underlying mechanisms may differ.>>>

Bingo! I think it's why it used to be called (and probably should still be) Meniere's Syndrome rather than Meniere's Disease. It's likely a result of a collection of "causes" rather than a single thing. I think it's a "condition" mostly defined by a collection of symptoms rather than a "disease" like polio or TB or something that's related to a specific cause and effect.

 

Yeah and that makes it impossible to find 'the' cause (and 'the' cure).

 

Yes, the research community needs to find the causes and cures for MM. I agree with Tony: MM is better called a syndrome rather than a disease.

But back to the start of this thread. It looks like there may be a good chance that more information is available (conclusive?) on whether viruses can cause MM symptoms. This is good news because, as others have pointed out, antiviral medication may become part of the normal protocol for treating people with MM symptoms. Perhaps, a significant fraction of the sufferers will benefit. No doubt some will not find relief.

Joe