The CURE ... Neurofeedback

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The CURE … Neurofeedback

Eight months ago, on May 1, 2011, I posted here as to how Neurofeedback was proving to be the "cure" for me in regards to this dreaded condition, referred to as Misophonia. I wrote of some extraordinary "successes" I was having at the time, and I wrote, "I do not know if this is the "cure" for all others on this site. I do know what it has done for me so far … it's given me the first real hope in defeating this after 45 years of anguish." You can read my original post if you go to where it says message # at the top of this page, and put in 20318 (do not use a comma in the number). The positive progress I had recorded up to that time was after 24 sessions with a Neurofeedback (NFB) practitioner, and I told of our plans to start our 15 year-old son with NFB who also has Misophonia. To my disbelief, there was response from just two people on this site. That is why I decided to post under the heading "The Cure" in hopes of gaining everyone's attention.

Neurofeedback has worked for both my son and me. I will stress that I suffered with this Misophonia condition for 45 years and to a degree just as strong as relayed by any of the messages posted on this site. Both my son and I have also dealt with various symptoms of OCD, which both my NFB Doctor and I feel that this condition is an element of. I have read past arguments of those that don't consider this OCD as they don't exhibit the "recognized" or usual symptoms, or have an official diagnosis of OCD thru the "main stream" physicians. Since I have not heard of others being treated successfully thru other means, I believe my NFB Doctor and I have earned the credibility in referring to this condition as an element of OCD.

If there were a rating system developed, both my wife and I would put me at a strong 90 to 95% improvement from where I was several months ago. I would be at the 100% level as far as the total absence of the anger that is instantaneously present when Misophonia sufferers encounter a "trigger." With some of the "successes" I am enjoying my wife tells me that, "You are completely cured." But I don't accept that quite yet as there are a couple elements that I still notice, although ever so slightly. 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. Our son we would put at an 80% improvement level. Possibly we could rate him higher yet on that scale but with people that age it can be difficult to determine if some actions are unrelated to this condition and rather just the normal teenager hormones to be dealt with. He also started with more profound "recognized" and typical OCD symptoms than what I did.

In addition, my higher rating of improvement can be attributed to my having a total of 112 NFB sessions so far versus my son's 64 sessions. With saying that I want to stress at this point not to let the number of sessions and the related costs deter you. I pointed out in my original post that I paid $4,100 for my initial 40 sessions along with a beginning and ending QEEG. 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, we made the decision to strive for perfection and be cured completely. My son has never complained one time with going to the 64 sessions as he continues to realize the subtle improvements he continues to make.

Our NFB practitioner will be starting with the use of a program called the LORETA in another 3 weeks. 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! Naturally we are excited about this as we feel that he will be able to identify and treat those last stubborn areas of our brains.

Over the last several months I have compiled nearly 80 pages of a journal chronicling the progress we have achieved thru Neurofeedback. I am working on condensing this material to a version that I can post at a later date so others may identify with situations we have encountered with triggers that have resulted in "successes" with a non-reaction and no anger present. In addition, our Doctor will be putting together a report for the Neurofeedback Journal and profession, along with my input from a patient's perspective, regarding NFB's success with treating Misophonia.

I am going to add a disclaimer to my post. All brains are different, and some people may not respond favorably to Neurofeedback, there are no guarantees. But, we are not the only people with this condition that have experienced success with Neurofeedback. My Doctor recently learned of an NFB practitioner in Texas that had posted on a professional online forum asking if anyone had experience in treating Misophonia. This practitioner initially started seeing someone for ADD, but then this patient's parents educated him on the Misophonia their child had. Some time had elapsed and he posted a second time telling that he was having success with diminishing the Misophonia triggers.

For those of you that contact a Neurofeedback practitioner and proceed with sessions, I will offer this advice … Do not monitor all of the posts on this site closely. I say this because of the number of posts where people are venting and telling of new and different triggers that outrage them. There have been arguments on this site in the past as to if the venting is helpful. I am not entering into that argument but rather just giving you advice on an observation that my Neurofeedback Doctor, my wife, and I all agree on. We feel there is the possibility of one developing new triggers they have not experienced before when reading of them thru the venting on this site. We base this on the fact that neither my wife, nor my Doctor, ever realized the manner in which people chew gum until coming in contact with me. It was simply something they were not conscience of. But now they both notice if people chew their gum or food in an obnoxious manner. It does not cause them to get angry, but they do notice it now as readily as a Misophonia victim does. For this reason I scan the headlines on this site but do not read any postings that appear to be from someone venting or telling of new triggers.

I intend to stay anonymous on this site as well as in any subsequent article in the NFB Journal. If it was just me I would have no issue with using my real name. But I will not take the chance of subjecting my son to ridicule from his peers if our identification were known and talked of openly on this site, on a Facebook page, or in the media. Please respect this. We all know that if we told acquaintances we had ADD … they would have compassion for us. If we told others that we had depression, or bipolar … we would be shown compassion. In fact if we say, as my Doctor and I maintain, "I have an element of OCD" … we will be looked upon with compassion. But to tell someone of Misophonia and its triggers & anger … will most often bring us ridicule and mean spirited provoking.

We live in Eastern Iowa so those of you that are close in proximity may send an email to my Yahoo Mail account and I will respond with the name of my Neurofeedback practitioner. For everyone else, please respect the fact that my Doctor cannot accept the several calls that could inundate him from those looking for referrals. He will not make referrals but would be glad to accept a phone call or an email from NFB practitioners in regards to protocol. My Doctor strongly suggests that one go to the website www.bcia.org to find a practitioner in your area and to make sure that they are specifically accredited for "BCN." Another valuable website is the International Society for Neurofeedback & Research at www.isnr.org . At this time the practitioner listing section of this site is down so check back.