Clyle Post from 3/9/12

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Here’s a copy of Clyle’s deleted post (via Mike). It may get deleted, but I can resend it after we get this fixed.

----- Forwarded Message -----To: Soundsensitivity Sent: Friday, March 9, 2012 10:00 AMSubject: Re: Neuro-Bio Feedback Continued...

Two months ago, on January 7th, I posted under the heading, "The CURE … Neurofeedback." This post you can look back at, message 24453, as well as subsequent posts relating to this. The following is a long response to various posts that began with this post by Dr. J, as she points out her opinion of Neurofeedback (NFB):

Re: Help!

I am sorry, this kind of therapy has been around a while and some pretty wildclaims have been made about other conditions or syndromes as to how well itworks. Be very cautious and remember there is an enormous placebo effect injust about all of those kinds of treatments, warm sympathetic provider ortherapist makes us all feel better.Be careful about the fees. This can run up a bunch. Most insurance companieswill not pay for neuro feedback.Dr. J

While I appreciate that Dr. J provides this forum as an outlet that can be used in helping others with this condition, I find her post to be a disservice to those that are exploring NFB, considering it for themselves or their child, or presently undergoing sessions. It was also written with disregard for the successes I have posted concerning my son and me. Please re-read my previous posts, then read the following, excerpts from the last couple weeks, and you be the judge as to if our success is a "wild claim" or due to a "placebo effect."

About 10 days ago a friend stopped by our home to visit. Although my wife had rated my improvement at a strong 90-95% just two months ago as I posted then, this visitor concerned her. "Mark," my visitor, was chewing gum in a very obnoxious manner and my wife was concerned that even though she had proclaimed me "completely cured" a number of times, that this could be just too much. For the next 2 hours Mark and I sat in my office looking over some forms and pictures, necessitating us in sitting about two foot apart. We had an enjoyable visit the entire 2 hours, I was not bothered at all by his gum chewing which he did the entire 2 hours, and in fact was disappointed when he had to leave. When he left my wife said, "There is no doubt you are cured, Mark was really obnoxious with that gum!"

Sunday as my wife and I were finding our seats in the church sanctuary, I spotted two seats right in front of a young man that was chewing gum. Although pre-NFB this would have been impossible, it was no problem to me at all as we took these seats. In addition there were two people directly in my line-of-sight that were chomping on their gum. Pre-NFB I would have instantly stomped out and sat in the lobby for the next hour swearing to my wife later that I would never return to that church. Instead, I sat there enjoying the entire hour-plus service, completely relaxed, with my focus on the Pastor's words … with no focus on the gum chewers!

Three days ago I volunteered at a homeless shelter. This is something I would not have ever subjected myself to in the past as certainly there would be not only staff and volunteers chewing gum, but some of the homeless as well. In addition to those former triggers … with some of the people we served suffering various mental issues and some lacking teeth to eat properly the eating manners of several of them were something that no Misophonia sufferer could possibly endure. Yes, all of this was present, but it did not bother me one bit, I smiled my entire 5 hours of service there, and enjoyed myself so much that I returned to volunteer again yesterday.

Yesterday at the homeless shelter I was introduced to a gentleman, Jalen, one of those served, that was giving back by helping with the dishes. Now this person was very nice, he took his duties very seriously, and he chewed his gum just as seriously. For an entire 2 hours Jalen and I worked shoulder to shoulder as he gave me several instructions and we conversed on various topics … all the while he was chewing his gum. I had an enjoyable time serving again, found myself smiling throughout my entire 3 hours today, and thanked God that I was able to do this … something that would have been impossible pre-NFB! Most of the time when working with Jalen it wasn't even crossing my mind as to his gum chewing; I was not focusing on it! The few times I did notice actually made me feel good as I smiled and thanked God again … and thanked Dr. Lyle and Neurofeedback.

I suffered with this dreaded condition for better than 45 years and would have been resigned to live with it for the rest of my life had it not been that my wife and I noticed that our son was also plagued with Misophonia. I absolutely would not allow him to live his life as I had to and made it my mission to cure this. I tried several different avenues, including the $3,000 noise generators, several sessions with a very successful and credible hypnotherapist that I respect, and monthly 5-hour round trips for a year to a Homeopathic Doctor, all with no success.

I told of the successes and improvement our son has also experienced in my previous posts. Our son takes seven full courses in his sophomore high school year, two of those being AP college courses, in attending school 40 hours a week, studies at home 15 hours, and works an average of 20 hours weekly. In addition to these 75 hours he has his 2 hours a week of NFB, an hour of guitar lessons, and still fits in plenty of social time with his friends. Those of you with children suffering with this condition, or those young people on this site in high school or college, you realize the success our son has had with Neurofeedback when I tell you that he just finished the trimester with a 4.333 grade point average … something that would have been impossible pre-NFB with all the triggers present in those environments!

Now our family is fortunate in that the cost of Neurofeedback sessions has not been an issue for us. Some of the detractors will certainly point out the number of sessions we have had but allow me to repeat what I had posted in January: At the end of the initial 40 sessions, both for myself as well as my son, my wife and I agreed that both of us had achieved a 60-70% improvement for our Misophonia versus our pre-Neurofeedback condition. Imagine how different your life would be, or that of your child, if you/he/she were rid of 60-70% of the triggers and anger … actually more on the anger as most of that leaves completely and is the most pronounced effect first realized. Although our lives would have been so much more enjoyable even if we had stopped after the initial 40 sessions, I made the decision to strive for perfection and be cured completely. Quite possibly we could have stopped our sessions after the initial 40 and in time realized 100% relief as per the following that I posted before:

The terrific part of NFB is that although there may be an "ebb & flow" of reactions during treatment as improvements are made … improvements realized are permanent. Even more promising are studies that have shown that even when NFB sessions are stopped, subtle improvements are still recognized months later.

Dr. J said:

I am sorry, this kind of therapy has been around a while and some pretty wildclaims have been made about other conditions or syndromes as to how well itworks.

One of the conditions that have found the most documented success with Neurofeedback has been that of ADD / ADHD. Far from "wild claims" allow me to tell you of our daughter, "Kathy." A year ago Kathy was failing terribly in her 3rd grade year due to her ADD. It was a constant source of tears for our entire family as we realized the bleak future she faced. I'll make a long story … short, as it doesn't pertain to Misophonia, but rather the success of NFB, and hardly a placebo. Our tears are only of joy now as Kathy came home recently with her 4th grade spelling test at 25 out of 25 correct, her math test with 15 of 17 correct. She still has a ways to go as her learning was just not there until after she began Neurofeedback. But it is absolutely not a placebo as Kathy not only did not want to be at her NFB sessions, but at her age does not even understand what her problems are, and did not understand the hopes of NFB.

Yes, I tried the noise generators … no placebo effect! Both my son and I tried hypnotherapy … no placebo effect! Both my son and I tried the homeopathic remedies … no placebo effect! By the time we started NFB … we certainly weren't conditioned with the kind of hopefulness that would lend to having a placebo effect!

Still, I will acknowledge, as does Dr. Lyle, my NFB practitioner, that an initial placebo effect is possible with several treatment strategies, including NFB. But a placebo effect would diminish quickly. Certainly this makes sense to even the most pessimistic of you or how do you think the pharmaceutical industry would become such a multi-billion dollar goliath? If placebo worked long term, don't you think that the "placebo sugar pill" would replace that of the actual drugs? My first NFB session was February 16th of last year … one year ago I was already experiencing improvements. A year later … hardly a placebo effect!

According to Dr. J:

Many here have tried NBF and not found relief. We can take that intoconsideration. Some have tried and found improvement. We would all like toknow, why? And why these people?

Actually, not many have tried Neurofeedback for Misophonia. I know that it did not work for Adah, as I responded with the following in a previous post:

"I am very sorry that Neurofeedback did not work for you (Adah) in the past. As I put in my earlier post, "All brains are different, and some people may not respond favorably to Neurofeedback, there are no guarantees." I hope you realize that NFB may yet work for you as it may have been the failure of your particular NFB practitioner or the protocol they used. For example, I have gone to Chiropractors (not for Misophonia) over the years that have not been able to give me the relief or help I was looking for. But, I have a Chiropractor now that uses the Activator device and I have immediate relief with a single appointment. It wasn't that Chiropractic wouldn't work for me … I just needed a different practitioner and protocol. I hope you will keep open the possibility of using Neurofeedback again."

Kathy Howe has commented in the past that her daughter's NFB sessions seemed to help somewhat, had mixed results, and has been contemplating trying more sessions.

Besides my son and me, I know of a practitioner in the Denton, Texas area that initially began seeing a child for ADD. The child's parents told of the Misophonia this child also suffered with. This practitioner is reporting success in diminishing the Misophonia.

Another practitioner in Rhinebeck, New York, reported the following to me: "Indeed, Misophonia is a rare and rather misunderstood condition. Personally, I've come across only two cases in my 20 years of practice. One of them, a 20-year-old man, improved significantly after 20 sessions of NFB. He was approximately 80% less bothered by the sounds, according to his own assessment. That was almost 10 years ago. The other case, a teenage girl, had only a very modest improvement in her symptoms."

** For those that may live in the Denton, Texas area, or Rhinebeck, N.Y., and like the name of these practitioners, please send me an email to my Yahoo mail.

maikaefer said:

I have only heard of one person to claim to be cured by neurofeedback (so far), I will personally not see it as a "cure" until more people have reported it to be so. I am glad others are trying it, but have tried so many things myself that I am weary, so I will remain cautiously skeptical along with hopeful. I don't think Dr. J should endorse a treatment based on one anonymous person's claim, IMO

Maikaefer, I am in agreement in needing more people to try Neurofeedback. It is my hopes that my posts encourage more of those that can afford it to do so, as more successes and testimonials would help those others that struggle financially to feel it worth the risk to see if NFB works for them.

I don't believe any of those posting, including myself, were asking or looking for an endorsement from Dr. J. It was her tone of disregard for the merits of NFB that lead to the rebuttals.

As per your statement of "one anonymous person's claim" … I have pointed out before that my intentions are to stay anonymous as it would not be fair to subject my son to ridicule from his peers if our identity were known. I hope that all can appreciate & respect this. Beyond that, I would think that my anonymity would be a source of respect from others as it serves to show my only intentions in relaying my story … that of serving others in attempts to help. I have no desire to be the public face for this. I have no desire to receive "credit" if NFB truly leads others to cure. My only desire is in having the quiet satisfaction of knowing that I have helped others in defeating this. In fact I had been at the point that I was not going to post anymore. I have achieved what I needed for my son and me, and saw no personal benefit in further participation to open myself up to some of the attacks and anger that is often present on this site. Someone on the site alluded to another person that had "willed" away their Misophonia (their words, not mine) and said that this person had left the site out of anger. I question as to if he left in anger, but very possibly in frustration and perhaps justifiably so, as it is frustrating to being both doubted and attacked when all you're trying to do is help others. It was "greg z" on this site that convinced me that there were well meaning people that followed this site, that although some may not be posting, were following, appreciating, and being helped by my story. In addition, when I think back of the despair that my wife and I faced when we realized our son had this condition also, I feel I need to try one final time in helping to alleviate this for others. I am going on at length with this entire post as it is not my intentions to get in a back & forth debate. Any questions one may have please search my previous posts, the answers are there and I can't add much more. I may post at length, but it will be infrequent.

I have given out my practitioner's name before, Dr. Lyle, so those that pursue NFB could feel free to have their practitioner contact him to discuss his experience with Misophonia. There is nothing in this for Dr. Lyle either except in assisting other practitioners. Like me, he has absolutely no interest in being interviewed by any media, such as the 20/20 proposed piece. At the appropriate time he will enter his report in the Neurofeedback Journal and feels this is the proper channel to follow.

Heidi … in a prior post you stated the following concerning the Zengar NFB approach:

Some of the more old school or traditional NRB providers either are on the fence or don't like it. I personally believe that for some of those who are are against it, it probably has to do with money. Old school technology is slower in results and requires more visits, whereas Zengar often gets results significantly faster, so the practitioner can't bill as much. For others, they just haven't yet been trained, or don't like the idea of it, it does approach NFB in a completely different way.

Heidi … I very much hope that the Zengar method of NFB works for you. In addition Bernadette's daughter is using Zengar, and Mike Lawrence just mentioned he was beginning with Zengar. I truly hope that Zengar works for all of you as if it did, it could very possibly be the most cost effective method of NFB in eliminating Misophonia. There is definitely an ongoing battle amongst factions of the NFB practitioners with the traditional NFB practitioners versus the Zengar method, and vice versa.

I do not share your opinion regarding "it probably has to do with money" in that the traditional providers require more visits, thus able to bill more." Traditional NFB has been in existence for 50 years and the preponderance of data regarding NFB successes with the traditional method would be my opinion as to why practitioners stay with what has worked for them. I have mentioned before that those with ADD have been perhaps the leading beneficiary of NFB treatments, and this has been due to traditional NFB. In addition, over the last full year with all my appointments, as well as my son's and Kathy's, I know Dr. Lyle's heart, and he is the most well meaning and caring individual you'd hope to meet. He has conducted NFB at reduced rates due to some people's finances, so his method has nothing to do with billing more.

In regards to your statement, "For others, they just haven't been trained." This is not a reason why traditional NFB practitioners have decided against Zengar … as Zengar does not take any training. The following is a post from the owner of Zengar on another Neurofeedback site:

"No other knowledge or specialexpertise needed besides the simple act of hooking up the sensors. Othersystems are, of course, VERY different and do require specialized knowledge andtraining to perform effectively."

"ValB"

valbrownusa

In fact, on Zengar's website, they promote the fact that you, me, or anyone else on this site can order a Zengar unit for home use, take it out of the box, and be running a session the same day.

Heidi … please understand that my pointing this out is not to spark a debate over these two approaches to Neurofeedback. As I stated earlier in this post, I have achieved what I needed for my son and me, so which method proves out to work better or faster for Misophonia is of little concern to me … except for the fact that I actually hope that it would be Zengar because it could possibly be a more cost effective approach for the majority of people. I just want to protect the integrity of the traditional NFB approach in the event that the Zengar fails to produce results for Misophonia. It is the traditional approach that Dr. Lyle uses, as well as the Denton, Texas and Rhinebeck, N.Y. practitioners I spoke of that have had success with Misophonia.

Heidi … you also said:

But it has eliminated my essential tremor that I have had in my left hand since I was 15 which is thrilling to me.

Congratulations! And again, a reason I sincerely hope that Zengar works as well for the Misophonia. My brother-in-law has an essential tremor and I have been talking to him about NFB … your post may have just helped me.

Since I would like this lengthy post to be the post to end all posts for me, in the interest of fully divulging what we have done for our Misophonia, the following is an excerpt from my first post back on May 1st of last year. Please read, or re-read that post also, message 20318:

On April 11th I purchased a device for $900 from my Doctor called the Alpha-Stim 100. You can learn about it at www.alpha-stim.com. The testimonials from both patients and physicians are plentiful regarding it's use for anxiety, insomnia, & depression. It has been effective for other purposes too but they can only promote it for what the FDA has approved. I have been using the Alpha-Stim daily along with my 3 times a week Neurofeedback. I do not feel the Alpha-Stim is an alternative, but rather to be used in conjunction with the Neurofeedback. In addition, per my Doctor's instructions I take daily doses of fish oil, krill oil, and Suntheanine L-Theanine.

** Use the Alpha-Stim now 2 or 3 times a week. We all take fish oil & krill oil. Only I take the Suntheanine L-Theanine per Dr. Lyle's recommendation due to my QEEG reading.

** Also of importance to point out is that Dr. Lyle has begun to use a system called the LORETA, which he will incorporate in every third session, is like a mini-QEEG, a functional imaging technique that looks directly at brain activity in "real time." The data to date is showing the use of the LORETA enables one to treat at a more successful rate … at a quicker pace … and for more conditions!

I have covered a lot of territory here, and I hope all can observe … without any anger at all. It is such a nice benefit of the NFB to have the anger gone. I am a very fortunate man. Four years ago I survived an extremely deadly case of cancer and am cancer-free today. I have been able to find the cure for my son and me in eliminating this horrible condition from our lives. And we have found the treatment, NFB, to effectively give our little girl an opportunity at life. I praise God, and pray that all of you find relief also.

"clyle"

>> Interestingly, G is a well known and respected audiologist and psychologist and it is very nice to have him here, commenting once in a while, and finding an interest in all of you. These are good things.> > Dr J>