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.

Halfway Through Brain Retraining

I titled this post "Halfway Through Brain Retraining" and not "Halfway Through Brain Rewiring" on purpose. While the minimum length of DNRS practices is 6 months, many who follow the DNRS program continue their practices at varying intensity for longer in order to rewire their nervous system to a state that's considered recovered.

I will definitely be practicing and re-wiring for longer than 6 months.

However, as far as the mandatory one hour of brain-retraining practices that I must do each day to set my limbic system firmly on the road to recovery, I am halfway through!

Part of the brain retraining involves incremental exposure to previous triggers to help the limbic system remember that things like scented hand soap, going on a hike, or eating vegetables, are not dangerous. Well, I made an 'oops' a few weeks ago. I overwhelmed my limbic system, believing it was ready for a certain level of challenge when it was not--at least, certainly not under the circumstances in which I challenged it.

The 'oops'es are to be expected; I am re-negotiating my relationship with my nervous system, some facets of which have been my "normal" for over 30 years! There's bound to be some missteps along the way. Insert flare-up here.

It was a long, painful, uncomfortable several days, I'll give you that.

And yet.

In psychology and neuroscience there is something called the Window of Tolerance (WOT). It's essentially our capacity to handle everyday stresses and challenging situations. For someone whose limbic system has become stuck in a stress response (🙋🏻‍♀️), the WOT is smaller, meaning it doesn't take much to go from "I got this" to "I don't got this."

It was actually towards the end of August that I noticed my WOT seemed to have expanded. I'd had a handful of somewhat aggravating situations over the course of a couple weeks that, in the past, would have each triggered an emotional response much greater than what the situation called for--essentially falling out of the Window. But they didn't--each of the situations was like, "well, darn. Okay, Plan B. No big deal. I got this."

I was so proud of my nervous system!

I didn't mention it in my 2-month update, because it still seemed surreal. Did my Window just get bigger? Y'know, it does look wider. The ledge seems thicker too. I'm sure there's more light coming in...

In the past, nothing sent me spiralling emotionally like a flare-up; they were unpredictable, painful, and each one took more foods off my tolerance list. Not only would I fall out of the Window, it felt like I also landed in the thorns of the rosebush below. Even at my 'best' over the last 5-6 years, I've spent most of my time sitting on the Window sill, legs dangling over the edge.

With my recent 'oops,' I certainly fell out of the Window; anyone would. However, rather than drop to the thorny ground below, I managed to grasp the sturdier Window ledge with my hands on the way down. I hung there for a minute, facing to the wall. "Damnit." Took a deep breath. Found my feet and placed them underneath me. And then, with a strength I haven't had in some time, climbed back in through the Window. 

I sat on the ledge for a little bit, as I caught my breath and brushed the dirt off my hands.

And then I made my way back to standing inside the window, looking out and admiring the view. 

I don't know that this analogy does justice to the significance of this milestone. Physical well-being aside, the hardest part of the last several years has been the increased volatility of my emotions: extreme emotional reactions to any level of stress, with poor recovery time;* not really ever feeling at ease; and certainly not feeling like 'me.'

To see the change in my response to mild stressors is one thing. To see the change in my response to one of my biggest stressors leaves me in a little bit of awe, to be honest.

I really am proud of my nervous system--and pretty proud of me as well.

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A post shared by Zulaikha 🌈✨💌💗 A Dose of Reminders ✧.* (@adoseofreminders)

*i.e. irritability or anxiety or ruminating long after the stressful event is over--this is a sign of a nervous system in a toxic/chronic stress state.

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!