John of Ohio

Thanks Stephen,

Nice summary!

 

In most developing countries in the world, you can often just walk into a pharmacy and buy whatever you want, although this might technically be illegal in some countries, and I do not recommend skirting the law.

My husband's doctors have been really interested in the studies and have been willing to write the required prescription. We pay for the medication from our own pockets and assume all the risk. Although it is not common to prescribe antivirals here for Meniere's (far from it), the doctors we have spoken to are always intrigued and happy that some new breakthroughs are being made.

 

Bulldogs probably misunderstood your post of 6/6, where you stated:

'' Most importantly, I've discovered that people on the new regimen, at 3000 mgs of daily lysine (in the strict dosage regimen described in the document), who have persisted for at least 6 months, have at least a 90% success rate. That's another thing I revised, the information on how long it can take for results, and why it's important to persist with the regimen for longer periods than recommended in the past".

 

No it is not. Meniere's is defined by idiopathic symptoms only. Those symptoms are:

Cyclical, in identifiable cycles:

Increasing tinnitus
Increasing aural fullness
Rotational vertigo
All resumes as normal
Repeat
Measurable low frequency hearing loss that increases over time
The symptoms are idiopathic, no known cause.

Those are precisely the symptoms that I had. And because my ENT did not know the cause of these symptoms, he diagnosed Meniere's, a proper diagnosis, and he placed me on diuretics. But also because he diagnosed me with something that he obviously, and admittedly, could not help me with, and indicated to me, confirmed by my subsequent personal research, that no other doctors had any better ideas other than to destroy or remove certain parts of my inner ear, I went looking for answers myself.

At that time, I had experience dealing with idiopathic symptoms, a decade and a half of trying to decipher the source of my wife's trigeminal neuralgia, which, as it turns out, would be the same source as my own symptoms, albeit completely different symptoms. The only difference is that TN affects the 5th cranial nerve, which incidentally innervates the cochlea, and Meniere's is associated with the 8th cranial nerve, both of which attach to the brain stem, just above the first vertebra.

I have written the story pertaining to how I came across the connections between her symptoms, and mine, several times in the database thread and elsewhere. But make no mistake, mine was the vanilla case of Meniere's.

 

OK, here we go again. Folks should begin to notice a pattern here, a pattern that plays into exactly what I have been writing. Like Shartshoe, Chris thinks of remission as luck. That is the way doctors teach remission. But Chris is negating the very real possibility that there might be an identifiable cause for remission other than some statistical factor, the 'luck factor,' or perhaps regarded as the 'remission factor.' And in answering as he did, Frank agrees with me that he is only 'lucky,' perhaps fortunate is better, because he found this site, after which he was guided by his own thoughts to try various treatments others have reported success with, and as a result was able to identify the cause of his symptoms and successfully treat that cause, which arrested his symptoms, caused them to remit. And that is precisely what I have been saying. Look for the pattern in these responses.

 

This is a monumental point for people to consider, even the folks at the University in Sydney, which I suspect they do. If by whatever cause the tissues of the inner ear are damaged beyond repair, then even though someone may have discovered the cause of those damaged tissues, and treats that cause, that does not ensure that the symptoms will 'remit.' Until the damage has been repaired, if it even can be, there is no reason to believe that the sufferer's symptoms would be affected, even by a treatment that deals directly with the original cause.

 

Chris, if it is 'remission' as you put it, what does that really mean to you? Does it perhaps mean that the symptoms came on for no reason, and they left for no reason as well? What do you really mean using that term? Other of your posts indicate that you believe 'luck' has a role in this. Is that it, luck? Does an individual contract Meniere's symptoms because 1 out of 1000 people contract them, and the numbers force the issue? Once a symptomatic population is diagnosed with Meniere's, does some factor or ratio of the whole population of sufferers become 'lucky' enough to be included in the number whose symptoms remit? I ask these because your posts indicate that this is how you believe this works.

 

Boy, John, you are 'lucky' you went back on the regimen when you did. There is a certain percentage of the population that would not have recognized that correlation. You are lucky that you we're not in that group.

 

Nope, not slathering on the sunblock unfortunately (in fact some of our more moronic citizens use tanning beds!!) as we still compete with NZ for the joint title of 'Highest Rates of Melanoma in The Entire World'. One thing we don't lack down under is Vitamin D.

 

.

 

I get je feeling also that mm is a lot like autism and turetts syndrome,

a very wde spectrum and we all fall somewhere in that scpectrum some worse than others.

 

Goddamit,

Why does I always take an Italian woman to put me in my place.

 

No, you do not have the classic symptoms of Meniere's. As Intrepid allows, that does not mean that your doctor would not have diagnosed you with Meniere's. The mistake I believe we commonly make is in accepting that diagnosis from a medical professional, and naturally inferring that this diagnosis means that there is some particular condition associated with that diagnosis. But that is not the case.

A variation of that theme is that some people seem to think that there is in fact a particular condition behind the Meniere's diagnosis, the doctors just don't know what that condition is. I believe that is an unsupportable proposition. And I expect that proposition will run its course in due time and lose favor with researchers frustrated by their inability to isolate the plethora of variables, not the least of which is inner ear tissue damage, which damage could easily skew their data, expecting certain responses to treatment that do not forth come.

Perhaps look at your symptoms, as Intrepid suggests, as atypical Meniere's symptoms. That is a normal way that medical science classifies certain idiopathic symptoms. My wife has atypical trigeminal neuralgia, a diagnosis cast by a card-carrying, board certified neurologist who has no idea why she has this pain, and only attempted to treat her with habit forming narcotics, rather then searching for any reasons for her discomfort. In her case, the pain is not sporadic as the TN definition requires. Her pain is constant. But it is the same sort of pain, pain that registers to the trigeminal nerve system. In the beginning, the pain was sporadic and unpredictable, but it morphed into something that is constant and chronic.

 

I was classic MD and am certainly glad I did not have gent shots. Perhaps if I had hung around, my doctor would have 'just ordered' them. But I did not hang around long enough for him to try. Fortunately, I got to my symptoms early enough to successfully treat them. That is one drum I beat. As soon as someone has these symptoms, act immediately and throw every treatment reasonably understood that helped someone else who had similar symptoms. There will always be time for gent injections.

 

Well, I don't exactly think of it as luck. I only stated that I feel "lucky" that my remissions have lasted for so long. In fact, because my previous episodes responded so well to prednisone, my doctors believe strongly that there is a connection between my MM and some kind of autoimmune response. My health history probably bears this out. Everything has a start, a reason. If we could see the exact moment a cancer cell becomes dangerous, we would do everything in our power to stop it, but we can't (yet). I don't know what my triggers are. Many people don't. If I did, I would avoid it like, well, the monster that it is. Until science gives me hard cold facts, as Chris has asked for, I owe it to myself to try to find it myself.

 

I emphatically agree. And having your attitude is the first step toward discovering the source of one's symptoms and treating them successfully. Absolutely.

 

I think that Stephen summarised it pretty well, yesterday.

I am not about shooting people down. On the contrary, I applaud those who take the time to help others. I am interested in sorting the fact from the hype. I look at this forum, and others around the world, and it's the same. People are having good times and bad times. It would be great if some hard data, even at the most basic level (polling, perhaps) could be obtained to give sufferers, particularly newcomers, a reasonable idea of what may work and what may not. For them.

Better than tossing a coin.

Cheers all,

Chris

 

No one here has any reason to hype anything. No one advances personally from marketing any particular treatments. No, the folks who have discovered and successfully treated their Meniere's symptoms have nothing to gain from the efforts to help others here. So 'hype' is a non-applier here.

In that same mindset, in trying to help folks deal successfully with these symptoms, I would be remiss if I did not comment on the perceived need for hard data, Chris. Anyone who is depending upon hard data in order to steer their personal course through the Meniere's minde field, will be disappointed and ultimately discover that years that could have been used looking for their own answers will have been wasted, and still no hard data. One does not need hard data to be well. One only needs to discover for him or herself what is causing the symptoms, and treat that cause.

I learned that not from a medical doctor, but of all things, by a naturopath. After dealing with my wife's trigeminal neuralgia for almost a decade and a half; after two gamma knife surgeries, and an invasive surgery to micro-decompress the 5th and 9th cranial nerves; after almost dying from the aftermath of that surgery, we found ourselves at the end of what medical science could do for her, or perhaps better said, to her. We chanced into the office of a local naturopathic doctor. After spending a half an hour with the fellow, he threw out a pearl of wisdom I will never forget. He said, "We have to figure out what is causing her pain." It was that simple. Yes, that is what we need to do, get to the cause of the pain. But do you know that in a decade and a half of seeing medical doctors, and enduring major surgeries, not one of them ever uttered such common sense. Not one of them ever said, "We have to figure out what is causing her pain." Well, that is where all of the folks on this site who are suffering now stand. They have suffered, many for years and not one of their doctors have ever uttered, "We have to figure out what is causing these symptoms." So, Chris, and anyone who reads this, time is wasting. The longer one goes with these symptoms, the more damage is done to the tissues of the inner ear. There comes a time when the damage is irreversible. So the time is now. People must stop waiting for hard data and act with their own best judgments to "figure out what is causing their symptoms."

 

Henry:

I hope your wife is doing better.

Sincerely