Who benefits from “brain retraining for MCS”?
Three years ago I wrote a list of possible explanations for the improvements that some people have reported from “brain retraining for MCS”. In July that year Julie Genser wrote about thirteen “brain retraining success stories”, so I thought it would be interesting to look at the available information and see if any of my possible explanations apply.
Could some or all of their improvement be due to a period of avoidance? Could they have recovered more than they realised before they tried “brain retraining”? Did they suffer from anxiety and benefit from “brain retraining” as a way to reduce anxiety and physical symptoms of anxiety? What about stress? Could they have been misdiagnosed?
Thilde Jensen: Julie Genser wrote about Thilde Jensen’s recovery in an article posted on Planet Thrive on 18 August 2011. The article talks about Thilde’s chemical exposures while living in New York, and her move to Arizona and then five years living in an ecovillage to avoid chemicals. It also says, “The stress of not working coupled with the stress of 9/11 took its toll.” and “Then the Iraq War started, which was very traumatic for her. She started sensitizing to everything in her environment. First it was car exhaust and books. Then cigarette smoke and perfume.”
(In an interview published last year Thilde Jensen said about Annie Hopper’s DNRS program, “But it is not a cure… Still, I am able to be in the world again, I am able to go out without a mask, and I am able to use a computer again, with limitations. I got a lot of my life back, but not everything…”)
T-Can wrote in September 2012, “My MCS was a Post Traumatic Stress response.” and “My experience with MCS and the recovery out of it has left me believing that MCS is at its root a form of Post Traumatic Stress Disorder (PTSD). I am, of course, of no professional authority to posit that. It just makes sense to me, with my personal experience especially.”
T-Can has written a lot about his recovery and explaining how to use various techniques. His list of improvements after six weeks of DNRS includes “Anxiety and fear around chemicals and fragrances–lessened considerably.” In the same article he says, “I had lost my job due to downsizing and wasn’t sure what was going to happen to me.” That’s a situation many people would find stressful.
In part two of that article he wrote, “Another huge block that I discovered was an underlying fear of getting better.” and “I am using it to neutralize all kinds of negative thoughts and beliefs I have long felt no control over.”
Linda Worthington wrote, “To summarize, under life’s stresses and my reaction to them, my autoimmune system broke down. Then my amygdala, the gland in the brain that responds to stress and danger, went into over-drive, secreting excess adrenalin and reacting to everything as a threat of equal magnitude. This resulted in multiple hypersensitivities and a multitude of symptoms. I became uncharacteristically fearful and anxious; the adrenal gland sensing my fear, re-doubled its efforts to warn me of danger (Fight! Flight!) – a vicious cycle had begun.”
Julie Genser wrote in 2013: “What I learned on this trip: … 3) I had healed immensely in the years in Snowflake and no longer had severe neurological reactions to the old triggers; 4) When triggered, my brain still went right into catastrophic thinking and protection mode (e.g., still a lot of retraining work to be done!). Maybe the biggest lesson of all was how important it is to test your boundaries every now and then and reevaluate your limitations, to avoid over-protecting yourself and missing out on the richness of life unnecessarily.” In a comment under this article Julie wrote, “I kept myself very isolated for years, but who knows at what point I would have been able to be okay in situations that previously caused severe symptoms.”
Earlier she had written about how she treated her fabric sensitivity using her own adaptation of an exercise used to treat obsessive compulsive disorder and EFT. She wrote, “We worked on physical triggers like wool, cotton, and silk. But also on the anxiety and emotions my body associated with becoming sensitized to those things. … I had to release my emotional reactions to all the losses … I had to calm my nervous system and cellular response to the mere thought of organic cotton and wool.”
Lady Itchalot: I found very little about Lady Itchalot. Since number one on her list of basics for recovery was “Avoid what you can and create a safe place (a room) where you don’t have reactions. Wear a mask.” and Julie Genser wrote, “I remember photos of her in a Tyvek suit and respirator mask that she had to wear just to go food shopping” it sounds as if she took significant steps to avoid chemicals. Lady Itchalot also wrote, “I now believe that the limbic system, the central nervous system, and the amygdala all go into hyper-drive, putting out sensors and seeing danger at many new sensed chemicals.”
Els Valkenburg described how she avoided chemicals in a 2009 interview: “I live in complete isolation in an “MCS-safe” (non-toxic) house. It took my husband and I some time to get our house safe for me, but we managed. We do not allow guests in our home, unless it is absolutely necessary — for example, we may let a repairman in to fix something. I never leave the house to go somewhere, travel or visit people. When the air is clear enough I am able to go outside and spend time around our house in our garden and green yard.”
In her account of her recovery she wrote:
“Do you still have reactions after a year?
No, I do not have any MCS reactions any more. But I still have to be conscious about the fact that I do not give wrong signals back to my amygdala when I am starting to get worried or feeling fears. Especially when I did new things, like staying in a hotel, making a flight, encounter bad smells etc. I needed to stay focused on my amygdala.”
Susie Collins wrote in her account of her experience with Gupta Amygdala Retraining:
“Suddenly, out of the blue, as I was sitting there trying to figure out my patterns, I got a whiff of smoke on the air—and in that instant of one breath, my whole body went into a state of alarm: ALERT! SMOKE! DANGER! My mind lurched, my heart raced, and I suddenly felt unsafe. In that moment, I learned firsthand about a main pattern: breathing something threatening causes an instant alarm in every part of my body; even before I have time to think or analyze the source of the problem, I feel unsafe. Bingo! A pattern.
I immediately started doing the main amygdala retraining technique using my brain, body and voice, just as Gupta taught me only two days prior. The smoke was getting really bad and I heard sirens in the distance, which played into my own internal alarm. My husband dashed off to find the source of the smoke, but in that moment, I chose to focus on the retraining technique rather than the fire. I did the technique three times in a row and the alarm inside me subsided. I experienced no MCS symptoms!”
Leslie of the Oko Box wrote, “Over the years my symptoms of MCS kinda took up and down dives, with being only generally sick when going into K-mart (who isn’t sick in that place?), or when exposed directly to fresh paint, or loud amounts of perfume. These things bordered on normal, and didn’t stop me from at least hanging out at thrift stores. But nearly 5 years ago I got pregnant, and very sick – when I lost the baby my mild MCS turned into raging impossible to deal with every smell makes me wanna pass out and kill people so I must hide in the woods MCS. It was so intolerable that I could no longer drive without having seizures, I could not stand for my X boyfriend to come home from the store and get near me with his smelly clothes, I could not hang out with or visit any other humans, or go anywhere in public. After nearly a year of this kind of hell-ish reclusive life, I ventured out….”
“I (my body) was so used to reacting, there was some auto-anxiety involved… not ‘in my head’ but anxiety that was learned and out of control. Anxiety bad enough to be confused – like was it a symptom or anxiety causes me discomfort?”
“I am not in perfect health, I still have trouble breathing in certain places, I still feel ill to smell the fragrance detergents, I still know I am not reliable or well enough to go out and get a regular job …. BUT i am much more functional.”
Kath wrote, “During the first two weeks I was able to handle being around most chemical odours but occasionally, due to stress, anxiety or an excessively obnoxious odour, I returned to my old ways of reacting (ie. headaches, dizziness, brain fog, neck pain, anxious/aggressive behaviour or retreat).”
Diana Kottle is now selling her own brain retraining program and claims that “The key to releasing your suffering from Multiple Chemical Sensitivities (MCS) is to clear out the emotional piece that helps hold the symptoms and reactions in place. This includes feeling like a victim, creating and holding onto your identity as a “chemically sensitive person”, etc. because the faster you can take responsibility for your emotions, the quicker you will be able to release them and then get out of the way and allow your body, mind and spirit to heal.”
Libby wrote, “Just yesterday I was out without mask and realised that it no longer felt terrifying like it did when I first began doing so (maybe a year ago).” And in the comments she wrote “For me, PTSD came first so dealing with PTSD stuff, including anxiety, is an important part of my healing journey.”
Finally, Julie included Annie Hopper and Ashok Gupta in her list of success stories.
Annie Hopper wrote, “Worry was the thought of the morning, afternoon and evening. Sometimes I would just sit back and observe my thoughts and it literally seemed like an unending stream of worries. This was highly disturbing for me as I thought I already had the tools to stop this process. Yet nothing I tried was able to prevent it.” (Click Annie Hopper own story 1 to see pdf of article.)