Brain Re-training Update at 2 Months

So, I'm two months into re-wiring my limbic system. While the minimum length of time I must commit to the practices of the DNRS program is 60 minutes daily for 6 months, the program developers and coaches state that many people notice changes within the first few weeks.

DNRS makes it very clear that recovery is not linear. There will be improvements, some large, some smaller, sometimes the body will take a step backwards as the limbic system tries to communicate using old neural pathways.

(c) Photos by Gina

I acknowledged some of the changes I had noticed by the one-month mark--mostly around improvements in energy, mood, and cognition. I've continued to remain diligent in my re-training practices, and I was curious to see where they would take me next.

I have certainly continued to enjoy the extra energy in my days; I can't recall the last time I needed a nap (!). Additionally, even after I engage in modestly strenuous tasks, I find the rest period needed is shorter; and I no longer feel at constant risk of a crash. I even managed to stay up late to watch the Perseids recently, without significant repercussions the following day.

I like having more spoons.

Over the last month, I have continued to notice shifts. A few that are more personal than I feel comfortable sharing, but I will comment on two:

First, I seem to be losing less hair. A couple years ago, I noticed there seemed to be a larger amount of hair in the shower trap after shampooing than I recall at any other point in time. I presumed this was related to a lack of nutrition. However, there is noticeably less hair in the shower trap (and in my brush) these days. My diet has not [yet] changed, my hair-washing and styling habits haven't changed, the quality of shampoo and conditioner hasn't changed... so I can only assume this is another benefit of my slowly-healing limbic system.

Second, I am experiencing fewer headaches, and less severity of pain when they occur. Over the last 2-3 years, OTC pain-relievers either didn't work or weren't tolerated, so to say that is a welcome change is an understatement!

Again, I share this journey with you for a few reasons. Part of the DNRS re-training involves creating as many positive associations and cues of safety in the brain as possible. Spending time in an elevated emotional state helps the brain get out of the fight/flight in which it's been stuck, and back to safe/social. Documenting my journey can help me remember that I'm making progress on those days where the non-linear aspect of recovery feels all too real.

Documenting is also a way to celebrate, both alone and with others. Friends and peers have commented that there's a vibrance in my presence, a freshness in my face. When I've shared what I'm noticing in my body, they have celebrated with me. This empathy is a piece of the recovery too.

And lastly, as I was reminded by a friend, but didn't articulate as clearly in my first post, my story may become someone else's survival guide. I have been poring through innumerable 'survival guides' over the last five years, and it has finally brought me here. Perhaps I can be the turning point for someone else down the road.

The Road[s] to Recovery are Pathways in My Brain

This can't continue, I thought. Yet another GI flare from accidental ingestion of a trigger substance, and a few more foods became collateral damage in the process; leaving me with a total of 10 foods my gut can handle. And that includes baking soda and salt.

This, on top of the fatigue, the brain fog, the chemical/scent intolerance, the anxiety--all of which also seemed to be slowly getting worse.

This can't continue.

I had already been learning about how, for those with ME/CFS and similar multi-systemic, nebulous disorders, calming the nervous system is key in terms of any chance of recovery.

And I had been taking that to heart: increasing time spent in meditation, mindfulness, and nature; reducing my hours at work; reducing screen time; regular acupuncture and massage; yoga; a therapist with specific training in nervous system regulation; reconfiguring my Airbnb to be even more of a self-operating machine; breath work and vagus nerve exercises; maintaining hobbies and social connections to the best of my ability...

While necessary, these habits and practices clearly weren't sufficient.

As I wandered through my days wondering if I was missing something or if I was going to be one of the ones who just continued to get worse over time, I found myself listening to a podcast on ME/CFS recovery. In one episode, the host happened to mention a brain retraining program I'd heard of several years ago. It didn't seem like a fit at the time, and I hadn't given it much thought. Later, I'd seen it mentioned in a support & recovery group on Facebook, but at that point, I thought the practices I had in place were surely the equivalent.

Hearing it mentioned yet a third time in the podcast episode, I decided to reconsider it.

And my brain has been in rehab ever since.

The program is called the Dynamic Neural Retraining System; or, DNRS. In line with doctors and researchers like Gabor Maté, Ellie Stein, and Alex Howard, DNRS describes disorders like ME/CFS, fibromyalgia, long Covid, multiple chemical sensitivities (MCS), mast cell activation syndrome (MCAS), etc., as the nervous system being stuck in a maladaptive stress response--i.e. stuck in fight/flight/freeze. What happens when the brain is stuck in fight/flight/freeze? Excessive release of stress hormones like cortisol, leading to dysfunction in body systems like digestive, adrenal, and immune. The brain also starts to experience things as a threat that aren't really a threat (like food). And the longer the brain and nervous system are in this state, the stronger those faulty neural pathways become.

This I already knew. What I struggled with was how to get out of 'stuck.'

DNRS offers a specific protocol of practices to get the nervous system--specifically, the limbic system--out of the maladaptive stress response. Using principles of neuroplasticity, DNRS draws on practices from cognitive behaviour therapy, neurolinguistic programming, and emotional regulation to rewire the dysfunctional pathways that have developed in the brain over time.

...And it's working?!

At the time of this post, I have been doing the DNRS program for just over a month. The protocol requires commitment to doing the practices for an hour each day for a minimum of six months. That said, the program creator and coaches repeatedly mention that most people see changes and shifts well before the six-month mark. I have no idea what to expect for myself, or on what time frame.

However, in the last several weeks, I have noticed:

• Increased energy - I mean, I'm no Energizer Bunny, but I'm now able to get through the regular activities of my day without feeling like a leaden, brain-foggy mess by 3pm (which required a nap if I wanted to do anything--like make supper--during the remainder of the afternoon or evening).*
• Improved mood
• Increased tolerance to scents and chemicals - two months ago, the forest fire smoke was incapacitating. Last weekend, I went camping in the smoke-filled mountains for two days without issue.
• Increased cognitive clarity - I've noticed this most in the way I've been crushing it at word puzzles and DuoLingo lately.
• Increased presence in social activities

This is not small potatoes!** Aside from the practical benefits of feeling like a functioning human being more often, it has provided an increased hope for my own recovery.

I share this here for a couple reasons:

1. Knowledge is power. We can learn so much from the stories and experiences of others.
2. DNRS encourages it. One of the pillars of the program involves maintaining an elevated emotional state often to counterbalance the exacerbated negativity bias that has developed. Sharing and celebrating positive outcomes maintains hope and motivation to continue on tough days (because it's not a linear process and tough days will still happen as the brain re-configures its neural pathways).

DNRS is not a substitute for all the other work I've been doing, and the other work I've been doing is not a substitute for DNRS. Indeed, DNRS participants are encouraged to maintain healthy practices that provide safety cues to the brain, and support that elevated emotional state.

I am so looking forward to continuing to experience the rewiring of my brain and nervous system in real time. I'll let you know what I discover!

*To use the language from previous posts, it appears I have a few more spoons at my disposal.

**And gives me hope that soon there will be real potatoes!