Guest guest Posted August 2, 2012 Report Share Posted August 2, 2012 Excellent point!!!! there are many aspects and sides to this condition. I need sound therapy and find that counseling helps very much. It is important to manage diet and exercise too! We don't have the silver bullet ,but may in time. I do feel that NFB can be a big part of the relief all of us want and need.Sent from my iPad I am beginning to feel a little bit like a wet blanket, lol. Please think of me perhaps as a yellow light.....well intentioned and acting as a warning. This is not an NBF site. This is for people who have misophonia or 4S, to share and support, offer ideas on how to cope with every day and extraordinary issues, to try to understand all the aspects of this problem and try to determine who to see, what to do, and how to improve.... I am becoming concerned because there has been some very interesting reports from some members about the use of a therapy that has not been found to be effective for misophonia in any kind of professional manner. My concern remains for the parents of children, mostly, who may rush off and spend thousands on something that has little to support it at this time. I realize this must be a maddening challenge, as the reports by a couple people have been very strong in favor of this approach. For the sake of the children, I was hoping to find that these pioneers might be willing to complete the program as adults, and then report back to the group as to the long term results and of course short term results. That seems to make sense to me. But what seems to be happening is a rushing rapid kind of response and a kind of pressure has built up around the whole issue.... It is very hard to be patient. I can relate to that more than you know. I encourage cautious exploration of the area and again, I really am hoping that this site will offer many new options and sharing of many approaches. I know one person has had very similar positive responses to her chiropractice treatment. And we are seeing many people improving with sound therapy mixed with counseling. So something is happening, and this is good, please do exercise good judgment prior to taking loans, going into debt, or selling assets to pay for NBF. It is rather like the stock market at this point, if you can afford to play, be sure you can afford to pay, first. Warmly, Dr. J = Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2012 Report Share Posted August 2, 2012 Dr. J … Could you please when referring to Neurofeedback (NFB), use the correct acronym, NFB, rather than NBF. Throughout all the posts you are the only person referring to it incorrectly and I do not believe you would want to cause confusion amongst those less familiar with this type of treatment. I applaud and agree with exercising the use of "yellow caution lights" when referring to NFB as well as any type of suggested therapy, treatments, or management programs. Especially with so many people new to this site that are desperate for relief from this horrid condition, the tendency can be to rush into spending several thousands of dollars on something without thoroughly investigating. Let me tell of my own example. Upon finding this site in late 2007, absent any of your yellow caution lights, I quickly flew to your clinic in Oregon and purchased a $3,000 set of sound generators (sg). With the added cost of the flight and motel room I actually kicked out the best part of $4,000. I used these sound generators for less than one month as I quickly realized how spontaneous I had been with this purchase without investigating more thoroughly. Although some may claim that these can help block out or mask some offending sounds, they certainly do nothing to prevent triggers or offer relief due to visuals! For so many here the visuals of someone chewing gum, chomping on food, biting their fingernails, or just the repetitive movements of one's arm or leg … absent any sound … are just as big or bigger than any trigger with actual offending sounds. In respects to the sound, I found no relief with the sound generators. I actually found myself straining harder to hear thru the static being piped into my ears as I was being triggered. I would never encourage someone to, as you say, "take out loans, go into debt, or sell assets" at this stage whether it was for NFB, sound generators, Misophonia Management Programs (MMP), or any other purchase for that matter. It is my hope, as well as those others that have had success with NFB, that more people with the financial means will research as to if this is the route for them to try. If a strong number of those that do proceed gain substantial or total relief from their Misophonia, then I feel this will be the impetus for those with more limited financial resources to determine if this is a valid expense they should undertake. If one were to look back thru my previous posts I have always been responsible in giving the warning that NFB may not work for everyone as our brains are all different. I've also pointed out that some may initially not see success which may be attributed to the particular practitioner, rather than the practice of NFB itself. Heidi has done a superb job in researching NFB and helping others with their various questions. She can speak with authority as she not only has researched NFB to a great extent, but has personally also enjoyed considerable relief thru her use of Neurofeedback. Dr. Steve Rothman, an NFB practitioner, attempted to join this site so he could learn more about this condition but was turned down even though there have been others without Misophonia such as audiologists and hypnotherapy practitioners that have been allowed to join. Dr. Rothman certainly wasn't giving a sales pitch for business; read his post he put on the misophonia.info site to learn of the very conservative nature at which he approaches the use of NFB for Misophonia: http://www.misophonia.info/Forum/viewtopic.php?f=44 & t=508 Dr. J, you state that "the use of a therapy (NFB) that has not been found to be effective for Misophonia in any kind of professional manner." Some here may choose to wait for the "professionals" that have studied and researched this condition for 12 years. For myself, although some are quick to discount as "anecdotal evidence," I have enjoyed my life of the last 17 months … after 45 years of misery! Clyle >> I am beginning to feel a little bit like a wet blanket, lol.> > Please think of me perhaps as a yellow light.....well intentioned and acting as a warning.> > This is not an NBF site.> > This is for people who have misophonia or 4S, to share and support, offer ideas on how to cope with every day and extraordinary issues, to try to understand all the aspects of this problem and try to determine who to see, what to do, and how to improve....> > I am becoming concerned because there has been some very interesting reports from some members about the use of a therapy that has not been found to be effective for misophonia in any kind of professional manner.> > My concern remains for the parents of children, mostly, who may rush off and spend thousands on something that has little to support it at this time.> > I realize this must be a maddening challenge, as the reports by a couple people have been very strong in favor of this approach.> > For the sake of the children, I was hoping to find that these pioneers might be willing to complete the program as adults, and then report back to the group as to the long term results and of course short term results.> > That seems to make sense to me.> > But what seems to be happening is a rushing rapid kind of response and a kind of pressure has built up around the whole issue....> > It is very hard to be patient. I can relate to that more than you know.> > I encourage cautious exploration of the area and again, I really am hoping that this site will offer many new options and sharing of many approaches.> > I know one person has had very similar positive responses to her chiropractice treatment.> > And we are seeing many people improving with sound therapy mixed with counseling.> > So something is happening, and this is good, please do exercise good judgment prior to taking loans, going into debt, or selling assets to pay for NBF. It is rather like the stock market at this point, if you can afford to play, be sure you can afford to pay, first.> > Warmly,> > Dr. J> Quote Link to comment Share on other sites More sharing options...
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