Re: The CURE ... Neurofeedback

January 8, 2012

****** PLEASE make sure to find a NFB practitioner who has the same training

and certification as the one clyle53 used. I had neurofeedback training 2X/wk

for over 2 years and although it calmed my system and made me less hypervigilant

and somewhat less reactive, I am still at the top of the MAS (8-9).

Clyle53: where did you used to be on the MAS and where are you now? Also, with

my neurofeedback, I was told that a tune-up would be required every 6 weeks or

so (for life?). Is that the case with yours? I am delighted to get this update

from you! I remember when you posted that you were starting. At that time I

did find a BCN practitioner in my area but he never answered my emails or

returned my phone calls. It was really disappointing - he has a private fMRI

machine! I was drooling to get in there! Hahahahaha! I look forward to your

updates.

Regards,

Adah Siganoff

>

> >

> > 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.

> >

>

January 8, 2012