Brain Retraining, Three Years Later

Afternoon naps were a necessity,
just to function the rest of the day

I've been reflecting recently on how, just 3 years ago, my health had hit a personal rock bottom: a diagnosis of ME/CFS the year before helped explain why I spent most of my days in a brain fog; why I could barely make it through a 35-hour work-week without crashing; why someone's cologne could render me couch-bound for 2 days; why I could go for a gentle 30-min walk, but not a gentle 60-min one; and why my digestive system had stopped tolerating all but about 5 foods. The diagnosis helped explain those experiences; but it didn't make living through them any easier.

Always slender, I lost a concerning amount
of weight as food intolerances grew

As I learned everything I could about the disorder, I read that some people recover from ME/CFS, some plateau at a reduced level of functioning, and some slowly continue to get worse. Which cohort was I? Was I getting worse? Would I stabilize? Could I be one of the ones who recovered?

Turns out I could.*

The more I learned about ME/CFS, the more I noticed an increased recognition by experts that the disorder is caused by a nervous system stuck in a stress response--i.e. chronic fight/flight. Recovery required calming the nervous system.

And I felt like I had been taking that to heart: increased 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...

You can see the fatigue in my face.
Even the things I loved drained me.

While necessary, these habits and practices didn't seem to be sufficient. For me, something was still missing.

 

It turned out to be brain retraining. 

 

Through a few different people, I had heard about the Dynamic Neural Retraining System (DNRS)--a brain retraining program that promised to re-wire the neural connections in my brain that were keeping my nervous system stressed out.** Looking around at the view from rock bottom, I thought, sure, why the hell not? If it can alleviate even some of my symptoms, maybe I could at least manage the others better.

 

And in June of 2023, I began. 

• After two weeks, I stopped needing naps.
• After one month, scents and chemicals no longer immobilized me.
• After eight months, I could do physical activity at a typical level for someone my age.

The hike to this view shortly after starting DNRS did lead to a crash--
but it was half as long, and I haven't crashed since

 

Zip-lining in Costa Rica;
8 months after starting DNRS

These days, I sometimes find myself in the middle of an activity--swimming laps at the pool, pulling weeds from the garden, baking or batch-cooking--still in a measure of awe at what my body is able to do today. 

The brain-retraining I embarked on was definitely a catalyst in my recovery. However, it wasn't the only factor; and, I think it can be misleading to imply that any one thing can heal a person. When I was an active member of the DNRS forum, there were many who wrote about brain-retraining being the thing that saved them. However, what has been emphasized in any training or work I've done that's revolved around the brain and nervous system, is that healing happens in relationship. Sometimes that includes the relationship with yourself, but also the others who support you along the way--like others in an online forum, for instance; not to mention family, friends, and medical or mental health professionals. I think it can actually be dangerous to say that any one thing--brain-retraining or otherwise--is a cure-all; however, given the boost DNRS gave to my own nervous system, I get why a person might feel that way.

Backyard campfire smoke?
No problem!

For me, I feel like there was a trifecta of support that came together and really helped me gain traction towards recovery. Certainly, the DNRS brain-retraining program was a significant factor. However, before and during DNRS, and even at present, I've been doing the slower, inner work of somatic-based therapy. My therapist is trained in several body-based modalities; the longer I work with her to release stuck traumas, wounds, and emotions, the less I ever want to go back to talk therapy. Talk therapies like CBT have their place; but, the mind and body are so interconnected that we can't simply 'think' or 'talk' our way back to health. Somatic-based therapy has helped continue expanding the capacities of my nervous system, and re-establish authentic attunement to my own body.

Along with brain retraining and therapy, the third important piece for me has been a medication that helps mitigate some of my remaining digestion issues--mostly by boosting gut serotonin levels, where most of the body's serotonin comes from.

Together, those three elements have helped bring my body and mind to a place of regulation and recovery. 

I facilitate workshops for a living.
This was my first conference post-DNRS;
energizing instead of exhausting!
(Photo credit: SGC)

Am I fully recovered? I guess that depends on how you define recovery. A year from the time I started brain retraining, my symptoms had reduced to the point that I no longer met the criteria for ME/CFS--I'm not sure if that's considered recovery or remission, but given that it's a syndrome, and not a disease, I lean towards the term recovery.

That said, I'm still in the process of recovery in terms of gut healing. My repertoire of food has expanded greatly--I now have a handful of foods from each food group, as well as several herbs and spices to make flavours a bit more interesting. That said, I still pack my own meals and snacks for any event where there might be food, and the only restaurants I'm navigating at this point are places like Freshii and Chopped Leaf, where I can custom-create a salad. I take it one food at a time. However, the stress responses my body used to have to these foods is greatly diminished when they are first reintroduced; this tells me I'm doing right by my nervous system. 

Traipsed around Europe for
two weeks; no big deal

Of course, with recovery comes maintenance. The brain-retraining had a strict protocol of regulating practices and visualizations that I did 4 times a day, for a total of an hour a day, every day, for six months. After that 6-month period, there is more flexibility in how to continue with those practices, based on what the person's nervous system needs. I slowly tapered from 4 rounds of practice to 3, then 2, then 1, and one year after starting, I moved away from DNRS rounds as a part of my practice (though I still follow the DNRS protocol with each food I reintroduce).

Still, in addition to the specific brain retraining rounds, the DNRS program is based on five pillars:

1. Recognizing that one's condition is caused by limbic system dysfunction (i.e. a maladapted stress response)
2. Identifying and interrupting the thoughts, behaviours, and emotions that are associated with--and exacerbate--the limbic system dysfunction
3. Creating new neural pathways by completing the DNRS rehabilitation steps (rounds) for the minimum required duration
4. Incremental training to help the brain remember that what it previously interpreted as dangerous is actually safe (e.g. foods, physical activity, scents, etc.)
5. Elevating one's emotional state throughout the day

Selling at an outdoor art market--something I
couldn't have done just two years prior

Most of those pillars will be pillars for life. I've changed some of my habits and routines to live in a way that is more aligned with what my nervous system needs on a regular basis; and my nervous system now takes priority. In my life these days, that looks like:

• Keeping my reduced work hours for better work-life balance
• Prioritizing sleep, and honouring my circadian rhythm as best possible (because society sure won't)
• Regular physical activity--ideally outdoors
• Connecting to and communing with nature 
• Less time on screens
• Boundaries around the way I consume online content
• Honouring creative desires and pursuits (and not just photography!)
• Meditation (I'm particularly fond of yoga nidra, and guided visualizations)

Hiking mountains? Count me in!
(Photo credit: SG)

Sometimes I find myself in the company of others, and I overhear them sharing stories of long Covid, scent sensitivities, bizarre food intolerances, crippling anxiety... and I wonder if they realize they don't need to be stuck there. But there was a time when I thought I was stuck there. And I know everyone needs to come to healing in their own time and their own way. In the occasional instance that it's been appropriate to share a bit of my own journey, I have. And I hope it makes a difference.

And so I share my journey here, too, in the hopes that it will reach who it needs to. You are not alone. And there is a way out.

 

 

This is what healthy looks like

 

 *And, based on my recovery journey, part of me holds hope that the other two cohorts can recover as well. 

**DNRS is not the only brain-retraining program, though it may have been one of the originals. The others I have heard of--the Gupta Method, and Primal Trust--offer similar outcomes, but with a slightly different focus. As I understand it, DNRS focuses on neuroscience, the Gupta Method focuses on meditation and mindfulness, and Primal Trust focuses on attachment.