NUCCA success rate

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Stephen, I could only speculate. Perhaps you should contact Dr. Hain or Dr. Janetta and ask them.

 

What do you think about that, Stephen?

 

I may need a translator here. What is "it?" Do you ever use commas?

 

Tell you what, Stephen, if you have something to offer here, you offer it. And I will do the same. If you would like to make a point, you make it. I am not going to make it for you.

 

Stephen, make your point. I am not playing this game.

 

I do not think I could have said it any better. You gave me a chuckle, Larry.

 

I'm sorry it does not make any more sense to you, Stephen. Perhaps if you work at it, and broaden your perspective, and retreat from the notion that something is inextricably false until proven true to your own chosen standard of proof, then you may eventually come to realize that something that is not presently understood by either you, or medical science, might yet be true nonetheless.

 

Mr. Spring,

Out of curiosity, are you aware of any published double-blind clinical studies revealing the efficacy of any of the commonly-administered first-presentation Meniere’s therapies? Of particular interest is clinical evidence for the commonly-prescribed “LSD Therapy,” low-salt and diuretic.

At least in the US, virtually all Meniere’s patients are administered the “LSD” therapy. But I’ve been unable to find any clinical evidence for its effectiveness. Same for gentamicin injections, which are frequently advised here after the LSD approach fails.

And are there double-blind efficacy studies of SERC (betahistine) in Europe and the rest of the world where this is commonly the initial treatment for MM symptoms?

Frankly, I can’t find many statistically-proper, double-blind clinical results of any Meniere’s treatment method or procedure.

I appears that practioners dealing with the treatment of Meniere’s have simply not required or found useful double-blind clinical tests for much of anything they administer. It seems to be, “Try this. If it doesn’t work, then try this next thing....” Anecdotes and personal outcomes seem to be the applicable treatment criteria for Meniere’s symptoms, whether involving treatments from professionals, or with any of the alternative or complementary ones we amateurs have posted on this board.

Hard statistical science doesn’t much appear in anything dealing with Meniere’s symptoms, does it?

–John of Ohio

 

Good points John.Here in Sweden when I was on Betaserc,it was such a hassle as the pharmacy had to get a special license from some governing body here as enough studies had not been done on it to satisfy Sweden's strigent requirements for a drugs efficacy.I was prescribed it but it could take several days to get the approval.

 

I've been following this thread and I think both parties have valid points. NUCCA works for some, but not everyone. It would be useful to better understand why it works for some and why it doesn't for others. What characteristics indicate whether it will be successful for a given person? Where will it not help?

I've been down the NUCCA route and it didn't help me. It would have been nice if there were diagnostic indicators to help me determine if this treatment was suitable for my condition before spending lots of time and money on this treatment. This is where it is useful to make scientific inquiries into the various treatments offered on this forum to help answer those questions.

Hopefully someday our scientific understanding will be advanced enough to efficiently diagnose and treat various causes of vertigo/dizziness and associated symptoms without having to spend excessive time and money chasing various treatments to find the one that works.

 

Otter, I truly wish that I could tell you the reasons why it works for some and not for others, and to understand the reasons that symptoms could arise from this kind of upper cervical misalignment. In the past, when challenged on what I know to be true, from my own experience and the experience of others, both here on .org and elsewhere, I have endeavored to try to understand and explain it, not only to others, but also myself. Like JOH and his regimen, all we can do is look at the results, look at the physiology to the extent that we can understand it, and make as educated a guess as to why that might be.

But one thing that I know from dealing with neurological symptoms, not only mine, but also my wife's neuralgia, is that there is just very little consistency with them. Sometimes this symptom flairs up. Sometimes that symptom. Sometimes it relates to the weather. Sometimes not. Sometimes the symptoms are completely gone and sometimes they are overwhelming. And all that might happen in the same 24 hour period!

With NUCCA, sometimes, as in my case, symptoms can dry up very quickly. But generally, as JOH indicates with his regimen, any improvement occurs gradually, to the extent that improvement is marked on a month by month basis. In my wife's case, we even trace improvement year by year.

The biggest problem with studying these things is even having an idea of what is causing the symptoms in the first place. Because so much of this is likely neurological, and because neuro symptoms are so erratic, it is difficult to assess whether any sufferer might be helped before actually trying the treatment.

But I will say this. One factor in favor of an upper cervical alignment problem being the cause is the noticeable condition of the skeletal frame. In general, if the head is tilted one way or the other, neck seemingly not exactly straight, or the shoulders being out of level, each one of those is an indicator that the upper cervical vertebrae are not in proper alignment. Also, if the shoulders slouch to the front, or if there is a bit of a hump at the top of the back, those are also indicators.

Also, many times I have asked a sufferer whether he or she had ever suffered an upper cervical trauma. And that trauma might have even been years before. From my conversations with folks, there is a high incidence of people who have developed these symptoms, and who have also suffered a whiplash or other upper cervical trauma at some time in the past.

It is hard to tell exactly what incident in the past may have eventually contributed to Meniere's symptoms. Most kids have crashes on their bikes or fall out of trees. I sure did when I was a kid. But because it was so long ago, I cannot say, nor can any chiropractor say, whether any particular incident, or accident, may have been the genesis of the symptoms. IN my wife's case, a couple of years before her symptoms began, she suffered a mighty water skying accident, where she face-planted at a high rate of speed. It really shook her up. a couple of years later, she began trigeminal neuralgia symptoms. Was that the reason? Well, I know that it did not help her. But I cannot say that it was the reason.

So unfortunately, I believe it simply is what it is. The only real way to know whether NUCCA, or JOH, or any particular treatment might help, is to give them a try like you did. When science cannot pin point a cause and direct you to an effective treatment, or when the medical course available is invasive surgery, I believe it pays to try all of the reasonable non-invasive options first.

 

LMAO!

 

I think we can all agree that vertigo/dizziness is a very complex issue that is still not yet fully understood and likely has different causes for different people. Does that mean that we should stop asking questions to attempt to improve our understanding of those causes? Is it not a fair question to ask how many people who were helped by NUCCA also tested positive for hydrops? Would that information not help us understand better under what conditions NUCCA may or may not help?

 

It's a good question but one we can't answer. Nowadays the routine Ecog is not considered reliable and the Ecog attached to the eardrum which is thought more reliable is rarely used outside the lab. So it's something we could wish we had but we aren't likely to get across the broad population.

 

Henry, Stephen's reasoning is logical -- to me anyway -- and makes very good sense and I think you would have to accept as a reasonable point of view and as a reasonable person that the reason (that's a lot of reasons ) it appears to work for some and not others has to do with, at least in part, to what was mentioned earlier. There is a problem in the assumption that because one is feeling better the treatment worked. This is known as the post hoc ergo propter hoc logical fallacy. We do not know what the subject’s ailment would have been like had they not received the treatment. It’s possible they were destined to improve in any case and we do know, for example, that Meniere's disease typically slides into extended periods of remission. This IS possible.

There are others too of course: regression to the mean, confirmation bias, psychological factors are at play, and of course the word people seem to really dislike here -- placebo effect.

Anyway, my 2 cents.

LarryKing

 

Yes, Larry, I understand all that. And being a graduate civil engineer, having studied all the physics and calculus and chemistry, and statistics, I know the value of physical and mathematical sciences. And having studied the structural design of buildings, roads and bridges I also have a healthy regard for the empirical sciences. And so none of that is lost to me either. And having put all of the science I learned to practical use for over 30 years now, I also have a healthy understanding of how these certain sciences interact with the practical facts we encounter in the real world. So please realize that I am no foe of science.

But I also have my experience, and experience that you do not have; that Stephen does not have; that no one has, except me. And others have had the same or similar experiences as I have. And just as your experience has taught you to respect the truth of certain phenomenon that you may not be able to prove according to someone's preferred scientific standard, my experience has taught me the same thing.

And one thing that my experiences have taught me is that whereas we can and should use the science that is available when positive results can be verified, and predicted using science, we should never fully depend on science, when it asserts a negative result is always the case, when the available science is so radically incomplete, as it is in the case of the symptoms about which we converse on this site. Until science understands what Meniere's is, including its cause, science is not far enough down the road to in every case assert what it is not. And I am just using the scientific method here.

The science used above to discredit the general contention that I make concerning the correlation and likely causal relationship between the state of affairs in the upper cervical spine and the onset of Meniere's symptoms, is simply the science of psychology, or else science misapplied.

1. The disease may have run its natural course. (Science misapplied, Meniere's does not run its course)
2. Many diseases are cyclical. (Science misapplied, Meniere's cycles do not themselves cycle)
3. The placebo effect may be responsible. (Science of psychology, alleging the someone may be able to fool him or herself out of vertigo, science misapplied, fooling one's self out of vertigo is impossible)
4. People who hedge their bets credit the wrong thing. (Science misapplied, Meniere's symptoms cannot be credited to any particular cause by definition)
5. The original diagnosis or prognosis may have been incorrect. (Science misapplied, Meniere's symptoms are fully defined and the lack of known cause confirms the diagnosis)
6. Temporary mood improvement can be confused with cure. (Science of psychology, alleging that someone's mood may fool him or her to believing that he or she is cured when they are not, science misapplied, I doubt that in the history of Meniere's anyone has ever fooled themselves to believe that he or she is cured just because he or she happened to wake up in a good mood)
7. Psychological needs can distort what people perceive and do. (Science of psychology, alleging that the sufferers needs can change his or her perception of reality)

Buyer Beware! (A warning based merely upon a personal opinion, or prejudice against a certain opposing opinion, due to alleged psychological deficiencies of the person holding the opposing opinion, or based upon misapplication of known science, in order to convey the impression that somehow this same person's professed experiences should not be trusted.)

So yes, Larry, I am all for using science to the degree that it is known, understood, applicable and useful. But there is a point at which one must come to grips with the truth that in this particular area, very little of the science is confirmed, accurate and applicable. And so to negate any real possibilities, based upon so little actual knowledge, is to take one's opinion purely on faith that it is correct, rather than any science that confirms that it is correct. And science based in faith, is not science at all.

 

As a casual observer, I suggest that your principles of faith overshadow your principles of science. Without supporting any particular party, Stephen's argument appears logical, succint, and for the most part, based on hard data.

This is not a personal criticism, individuals believe what they believe, and in your case, you believe what you are saying. Your theory lacks scientific rigour, however.

 

Thanks, Chris.