The challenges of brain retrainingAs part of a recent survey we did on brain retraining, we asked some follow-up questions of those who did one (or more) of the brain retraining programs developed to help those with limbic system impairment syndromes such as multiple chemical sensitivity (MCS), electromagnetic sensitivity (EHS) and related conditions. In the interest of honesty and transparency, we are sharing what some people felt the challenges were with the various programs, in the hopes that it might prepare some of you and allow you to set yourself up for success going into it. Please keep in mind that just because someone had a certain issue does not mean you will.

It’s important to note, that despite all the challenges, and despite the fact that some people did not achieve significant improvement, or any improvement at all, the majority of respondents would still recommend that others try these programs! The potential to help is there, and each situation is different so it makes sense to give it a try if you have never tried one of these programs and your life is limited by a hypersensitivity syndrome like MCS.

QUESTION: What were the negatives about brain retraining and how did you deal with them?

RESPONSES:

With DNRS, the biggest negative was the time required to do the program every day. I’d spent $400 on the DVDs though so I just made a commitment to myself to do the six months the program asked for. When I didn’t feel like doing it, I reminded myself of the $400! – Caroline, Ontario, Canada (DNRS for MCS)

Brain retraining was not a quick fix for me. I had decided early on that I would be patient and I did not expect to get better instantly. I decided that even if I only got 1% better each week I was okay with that. This was a major life shift for me. It took me 10 years before I was able to even get a diagnosis. That was 10 years of sometime horrible suffering!  I was told at Stanford that there was no way to “cure” CFS and they sent me home saying that I would just have to learn to “live with my illness.”  Well, I did not want to live with my illness as my life was not worth living due to the constant suffering. I  made a decision that I was absolutely going to recover no matter what challenges I had to overcome or how long the recovery process would take. This was not really a fight for me. I actually had to give up and stop fighting and change my belief system. I had to be at peace with where I was and just take things literally minute by minute. It was the biggest challenge in patience and perseverance I had ever experienced. I am so happy that I did not give up. – Peter, California (ANS Rewire for CFS/ME + FMS)

The limbic system usually revolts when you try to change it, even if the change is for the better. So there can be an exacerbation of symptoms. With Gupta, I had a short period of extreme anger.  I wanted to punch him in the face.  I took a break for a few days and then got back to it.  With DNRS, I’ve observed in myself and in many people in the support groups, that the revolt is much stronger. I stopped practicing when my symptoms became too much. – Jeny, Texas (Gupta + DNRS for MCS, CFS, FMS, EHS, mold)

It could be tedious and consuming but I knew it was temporary and the payoff could be really big. – Diane, Connecticut (ANS Rewire for CFS/ME + POTS)

Dude, 1 hour per day for a year! For a person who spent enormous periods of time sleeping and had very little time with energy/without brain fog, that was a tall order! However, I was so desperate and had tried so many things. I found a non-moldy home and then set about doing DNRS with full throttle dedication. And it totally paid off with small, incremental improvements. Once I hit a plateau without improvement for several weeks at the 1 year mark, I quickly lost motivation, coming to hate doing the DNRS ’rounds’ at that point (which truly defeats the purpose of the mindset you’re trying to cultivate through the program, LOL). They said it would totally rid me of this mold sensitivity and some food sensitivities. While much less troublesome, I still have these issues. – Sarah, Oregon (DNRS for MCS, mold)

I had to spend six months without much contact with my closest friends. I still have limited contact with them. I no longer belong or fit into the MCS community, but I have not yet found another group where I really feel I belong. – Ellen, Arizona (DNRS for MCS, EHS)

I experienced anxiety when I first did it for a few days. – Sharon, Ireland (Gupta for MCS)

There was always some doubt and fear at first, but once it started to work then my motivation surged. Reading the book that Annie Hopper recommended before starting her program helped (The Brain That Changes Itself by Norman Doidge) alleviate my skepticism.  It took a great deal of effort and I pulled it off while continuing to work full time, but I realized there was no other good option, so I was very excited and motivated.  Finally I had an answer that seemed to make sense. – Jeff, Texas (DNRS, then Gupta + Psych-K for MCS)

There were frustrations when I would plateau. Sometimes I would not make gains for several weeks or even months. But I would push through, find new ways to motivate myself and to work the program. I would find things to work on within myself using the program and then would make more gains. – Linda, Illinois (Gupta for CFS)

It took a long time, much longer than 6 months. Good friends and counseling and my faith got me thru. Having a young son, gave me a reason to live and keep putting one foot in front of another. – Sati, South Carolina (DNRS for MCS, EHS)

Because I was so mentally compromised, I misunderstood many of the course instructions, which caused additional problems (i.e. more exposures to bad things) because of it. – Keith, Colorado (Gupta for MCS)

I strongly felt that DNRS was an incomplete program for me personally.  Maybe it works well for others, but for me, it was all about avoiding pain, pretending suffering does not exist, denying our daily experiences.  I feel this misses out on the concept of duality that says that without pain, there can be no pleasure.  Without hate we would never know love.  Without misery, there could be no joy.  This is what led me to my current Buddhist-inspired retraining routine. – Patrick, California (DNRS for EHS, lymphedema)

Warning:  Something happened to me on the Gutpa program that was very scary. It was life threatening and terrible to live through. It says in the book “Do not do this program if you have clinical depression”. This warning is not explained or even acknowledged by Ashok. I have depression and consider it part of Chronic Fatigue Syndrome. I assumed that was okay, as what person with CFIDS could do the program if depression was not allowed? I didn’t know if it was “Clinical Depression”. I went through the program for several months and had some initial sleep improvement, etc. At first, I felt better. Then I started to become suicidal. I tried to find a counselor or a psychiatrist, but it was hard in my area. I stopped the program and later took it up again. The second time I became suicidal within a few days. I could not get to any help and so I called one of the program counselors who was also a certified mental health counselor in New York. She told me to stop the program completely. She told me things to do and how to get to see a psychiatrist more quickly. I did find one and was put on a different medication (I was already on SSRI). I am doing okay now but still reeling from the huge emotional turmoil. This could be interpreted as a person with depression having a severe attack and it happened to be when I was doing this program. But I don’t think so. I was 65 years old at that time. Pretty used to the kind of depression I had. The program counselor in NY was alarmed and told me to stop the program, not to try and work through it (which was what I was doing). I feel that my system was so used to the way it dealt with stress and unhappiness and when I did the stop, stop, it was like pulling out some wires that had nowhere to go. The method works – maybe too well?? – Cheryl, Tucson (Gupta for MCS)

I didn’t really understand how it was supposed to work and didn’t really believe in it, especially after the first few months when I saw that it was not helping. I worked with a coach every other week or more often, but she was not able to motivate me or help me believe in the program. I found the Gupta program overwhelming with all the different elements you were supposed to do in different circumstances and I allowed that confusion to interfere with not fully committing to the program. It is overwhelming to know that you really need to be working on it all day long. Doing the program in itself is exhausting and leads to crashes. I found it impossible to explain to friends and family how it was supposed to work without sounding like I was a Christian Scientist who was just hoping she would get better through positive thinking. I was never able to get my partner to stop treating me like an ill person. My mother continued to focus on finding a medical solution. It is extremely difficult for me to determine whether I am “resting excessively” as Annie Hopper puts it, or if my body actually needs to rest. That is, it is extremely difficult to tell whether it is my brain just sending me unhealthy messages, or if my body is telling me that I truly need to rest. – Lina, Arizona (Gupta + now DNRS for CFS, chronic lyme)

RELATED ARTICLES
Brain retraining revisited: A follow-up survey
How long before you see results from brain retraining?
How brain retraining changes lives
The challenges of brain retraining
Advice from brain retrainers
Would you recommend brain retraining to others?

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