Brain Retraining Update (2 Years Later) | EDS, POTS, Chronic Lyme Disease, Intracranial Hypertension & More

It has been over two years now since I starting my brain retraining and nervous system healing journey, so I thought I would give an update as to how things are going!

To give some background, when I was in my early 20s I became severely ill, and at my worst, I was bed-bound with debilitating symptoms. Over time, I was diagnosed with many chronic illnesses, including ehlers-danlos syndrome (hEDS), dysautonomia (POTS), craniocervical instability (CCI), intracranial hypertension, chiari malformation, chronic lyme disease, gastroparesis, MCAS, etc—the list goes on.

These are some of the symptoms I dealt with on a regular basis:

Severe fatigue, migraines/headaches, full body muscle pain, joint pain, neck pain, pain/pressure behind my eyes, dystonias, non-epileptic seizures, weakness in my legs, tingling in extremities, light sensitivity, noise sensitivity, nerve pain, ringing in my ears/pulsatile tinnitus, blurred vision, nausea, bloating, constipation, tachycardia, brain fog, dizziness, syncope/pre-syncope, vertigo, chest pain, insomnia.

I was very, very sick and had to spend most of my time in bed.

For years, I went the western medicine route and tried all sorts of treatments, medications, and even major neurosurgeries. But unfortunately, I continued to get sicker and sicker. About a year after my last neurosurgery, I was the sickest I'd ever been. I was fully reliant on my neck brace (even more so than before my fusion surgery), and experienced unbearable symptoms every day. It was like I was living in a constant state of emergency and nobody knew how to help me. I was seriously underweight and close to needing a feeding tube. I truly felt like I was dying, and to be honest, if I had continued on the path I was on, I don't know if I'd be alive today.

At this point, I was being recommended more neurosurgeries and deep down I knew it wasn't right. If all these treatments and surgeries I had already had weren't helping me and I was getting sicker, how could having more be the answer? I had a gut feeling that if I were going to get better, I'd have to try something different.

I decided I would be open minded to more "alternative" healing methods even if that meant me doing things out of my comfort zone. Eventually, I found the carnivore diet and that very gradually brought me significant progress and healing (you can read more about my experience with an animal-based diet this blog post). Even after the improvements I saw with changing my diet, I still felt like something was missing.

About 8 months into starting the carnivore diet, I started brain retraining with a program called DNRS or the Dynamic Neural Retraining System.

Believe it or not, I had heard about brain retraining almost 5 years before I actually started doing it myself. I always assumed it was a "hoax" and that it wouldn't work for me because my illnesses were real and physical, so I didn't look into it further. Now I understand the science behind brain retraining and how it can help the body to physically heal from real, debilitating illnesses.

Our bodies aren't able to properly heal when our nervous system becomes stuck in a chronic survival state (ex. fight or flight, freeze, or dorsal vagal shutdown). This is something that happens subconsciously as our brains way of trying to protect us. Nervous system dysfunction can be triggered by many different things, including viruses, mold, surgeries, traumatic events, etc.

Read this instagram post to learn more about why this can happen and why I believe I became sick.

Brain retraining creates new neural pathways in the brain through visualization and other tools to consistently signal safety to your nervous system. This allows the brain to shift into a parasympathetic state or "rest and repair" mode where physical healing can start to take place.

Keep in mind, our nervous system state can impact the function of every organ and cell in our bodies (and even the expression of our genes). Brain retraining can facilitate physiological changes in the body. This is not just for anxiety or mental symptoms, though it is helpful for that too.

Read this blog post for more details on why I decided to start brain retraining.

By the time I started DNRS in April of 2022, I had already seen some progress from doing the carnivore diet and from prolotherapy treatments on my neck. At the time, I was spending about 3-4 hours out of bed a day (which was huge for me). But I was still very ill and dealing with severe symptoms on a daily basis. I couldn't even walk to the end of my driveway.

Everyone is different in how quickly they progress with brain retraining, but personally, I saw really quick progress. I think this is partly because of the nutritional foundation I had from doing an animal-based diet and partly because I really, really believed brain retraining would work for me. I was 100% all in.

I believed healing was possible for me. Of course, that belief didn't form over night for me, especially after years of doctors telling me I would be sick for the rest of my life.

Keep in mind, it took me 5 years since hearing about brain retraining to get to this point. It's completely okay if you are feeling skeptical or unsure. It takes time to let go of limiting beliefs.

I started with a curiousity: What if I could heal? What if my doctors were wrong, and I can get better? What if brain retraining really could work for me? That curiosity eventually shifted into a belief that recovery really was possible for me.

The brain retraining program I started with, called DNRS, involved doing one hour of "practice" or visualizations daily. During these visualizations you verbally visualize yourself healthy and strong (really drawing in the five senses). The brain doesn't know the difference between visualization and reality, so it's really powerful for healing.

I noticed some improvements within the first week of brain retraining. I was able to walk to the end of my driveway for the first time within a week of starting DNRS, and after one month, I walked a mile for the first time in 5 years. Prior to this I needed to use a wheelchair for most distances.

These are some improvements I noticed within the several months of brain retraining:

• Increasing energy

• Improvements in severe fatigue

• Faster recovery from "overdoing it" and "fatigue crashes"

• Improvement in POTS symptoms (dizziness, heart racing, etc)

• Improvement in walking ability/distance (walked my first mile in 5 years)

• Improvements in brain fog, dizziness, tachycardia, headaches/migraines, etc.

• Improvement in capacity to be around people, noise, and lights

• Improvements in sleep

• Reduction of chronic pain

• Reduction of brain fog (I can read and process information much better)

• Overall increased ability to do things

• Overall chronic body and joint pain improved

• Feeling much more safe in my body

• Some digestion improvements

For more details about my early on improvements with brain retraining, check out my 3 month update blog post and 4 month update blog post.

Doing brain retraining brought me more progress more quickly than anything else I've done to help me heal from chronic illness, and I'm so grateful. Some people ask how I know this with a surety, and the answer really is because of how I felt while doing my brain retraining visualizations and right after. If I missed a day, I didn't feel as good. If I kept up with it diligently, I continued improving.

That being said, it's normal to experience "dips" with brain retraining, especially in the beginning. Healing the nervous system isn't easy, that's for sure! In fact, doing brain retraining has been one of the hardest things I've ever done (aside from being chronically ill). But it's been 100% worth it.

Many people that do brain retraining experience whats called resistance. This happens because our brains are resistant to change, whether it's a positive or negative change. I really started to experience this resistance this when I hit the 4-5 month mark. I had times where I really, really didn't want to do my brain retraining. I'd often cry all the way through the visualizations or even feel anger when thinking about it. It was such a strange phenomenon, because I always felt better after doing it!

I stuck with the strict DNRS brain retraining protocol for about 6 months, and then I kind of hit a wall. I was starting to feel past trauma and repressed emotions resurface, and I didn't know how to handle it. I was feeling sadness and grief surrounding my chronic illness experience, yet I was physically doing really well and starting to get back to a more "normal" life. I couldn't really make sense of what was happening. I was healing, so why was I feeling sad?

Here's where I'll get into the potential downsides of the DNRS program. This isn't to be negative towards DNRS at all—it remains to be the best money I've spent on my health to this day and I'm so thankful for what I learned from it. But that doesn't mean its a perfect program.

DNRS is a great place to start for brain retraining, but it doesn't really give tools for processing trauma and getting back into normal life after chronic illness. It focuses on a "top-down" approach for rewiring the brain through visualization, but doesn't offer a "bottom-up" approach which involves signaling safety to the brain through sensation (ex. somatic practices or vagus nerve toning).

DNRS also encourages following their program with "military" like consistency and is more of a one-size-fits all approach. This never resonated with me, and I think that's one of the reasons why I did so well with the program. I was always okay with changing/adapting the practice to my own needs. For example, DNRS encourages that you always stand to do your visualizations. I never once did this and still experienced so much healing!

DNRS also is more of an "avoidance" approach, as it encourages redirecting negative thought patterns and constantly elevating your state of emotion. I do believe this can be really beneficial at first when brain retraining, as it's almost like wearing a cast for your brain until its ready to properly process more difficult emotions (and past trauma). But there comes a point where avoidance doesn't serve us anymore. Healing is all about increasing our resiliency and allowing ourselves to truly heal and move through past trauma as we're ready.

Over time, I started integrating somatic practices through my own personal research and that has been so helpful. There are lots of great free resources on instagram, youtube, etc. Sarah Jackson, Your Grateful Guide, and Primal Trust are some of my favorite accounts to follow for somatic practices.

I realized that it's normal to start to feel grief and past trauma resurface as you're healing your nervous system. When you're stuck in survival mode, you don't have the capacity to process past trauma. So once your brain starts to feel safe, it's normal to have those feelings come up. In fact, it's a positive sign.

Processing trauma and repressed emotions is such an important part of nervous system healing. It's best to go slowly with it as you're ready. We can't stay in avoidance mode forever!

After that 6 month mark passed, I started to just do visualizations for about 30 minutes a day, while integrating other somatic practices in. I made brain retraining my own! Even to this day I still feel better after doing a visualization, but it doesn't mean I have to do them for an hour every day.

I think it's important to note that healing from chronic illness is not an easy process and is not always smooth sailing! When you're chronically ill, you only have one focus: getting well. But when you start to live normal life again, it's a lot, especially after experiencing so much trauma. But I wouldn't trade these challenges for anything—it's the good kind of hard.

Over the past few years of brain retraining, I've continued to see healing and improvements. I now consider myself to be healthy and no longer identify as someone that is chronically ill. Letting go of diagnosis labels was actually very healing for me. The reason I share them now is only to encourage those that are struggling with similar illnesses that I had (past tense).

Pain, migraines, and fatigue are not my normal anymore. I'm now able to work, exercise, and enjoy life again. I'm back to rock climbing 3x a week and sometimes it still doesn't feel real.

Here are some more victories I've had since starting brain retraining 2 years ago:

• Driving again (I wasn't able to for years)

• Being able to lift heavy things (my surgeon told me never to lift more than 10lbs again for the rest of my life, and I can now do weighted pull-ups)

• Being able to babysit for my nieces

• Going on an international trip to Norway (and going on a 12 mile hike)

• No more chronic joint pain / subluxations (I do believe much of this is due to an animal-based diet as well)

• Starting to work again

Brain retraining has been a huge part of my healing journey and I'm forever grateful! Keep in mind, these changes all happened gradually, not overnight. In the beginning, it was very small victories and I made sure to celebrate them. I've been on the upward trajectory for 3 years now.

In the last few months, I've started another brain retraining program called Primal Trust. It's the most holistic nervous system healing program I've found so far. It has brain retraining, somatic practices, vagus nerve toning, trauma processing tools, live classes, communities, etc. I haven't finished the program in its entirety yet, but it really has the information I wish I had when I started brain retraining. I resonate so much with the creator of Primal Trust, Kathleen. She is very realistic and relatable and realizes there isn't a "one-size-fits-all" solution for brain retraining.

What I love most about Primal Trust is that it really embraces the idea that our bodies have an innate ability to heal (and that you are healing you, not the program itself). Because that's what it really comes down to: our bodies were designed to heal and these programs really are just toolkits.

Primal Trust has a free ebook about brain retraining that really does a great job explaining the science behind the connection between the nervous system and chronic illness. If I were to go back, I would have started with Primal Trust knowing what I know now. But I don't regret doing DNRS for a second—I learned so much with it and it was a great place for me to start my nervous system healing journey. I'll plan on sharing more about my experience with Primal Trust as I continue to move through it.

When people ask what the most important part of my recovery has been, I always say nervous system regulation, because it includes everything I've been doing to heal, including my diet changes (what you eat wires your brain).

Here's a list of things I've found impactful in my chronic illness healing journey (not necessarily in order of importance, and some may be left out):

• Brain retraining

• Animal-based diet (I started with the carnivore diet and now am doing more of an animal-based approach)

• Somatic practices

• Taking my healing journey into my own hands and trusting my body's innate ability to heal (this was difficult at first, but so empowering)

• Getting out of the "fix it" mentality and taking a step back from researching symptoms, conditions, and potential treatments

• Realizing that certain treatments, practitioners, or tools may be supportive in my healing journey, but that the most important part of healing comes from within

• Stepping away from chronic illness support groups and listening to recovery stories

  • See this blog post and IG post for more on this

• Not identifying with or claiming diagnosis or relying on that for validation for what I went through with chronic illness

• Resting when needed (not pushing through, but rather working with my body and slowly increasing capacity)

• Learning how to feel safe in my body (ex. through visualization, somatic practices)

• Letting go of limiting beliefs

• Prolotherapy treatments on my neck (see this video for my thoughts on this and why I believe this was very supportive of my healing, but that I could likely have healed without it)

• Myofunctional therapy (working on nasal breathing, tongue posture, etc)

• Working on circadian rhythm (morning sunlight before looking at my phone, minimizing blue light exposure, night-time blue light glasses, etc)

• Time in nature (in my most intensive healing phase, I often would spend hours laying in the moss in my yard doing absolutely nothing but being present in nature)

• Grounding (putting my bare feet in the ground)

• Sunlight (especially morning/evening sunlight)

• Connection with loved ones & prayer

• Laughter

• Fun (starting to live again in whatever capacity possible for you is so important for healing)

• Slowing down (not just my actions, but my thoughts)

• Gentle chiropractic adjustments

Some of you are wondering if I am still doing brain retraining. Yes, I am! But it looks very different now. I haven't been as strict with it this past year. As I heal, my body's needs change and so I adjust and adapt along the way.

I've always been more of a "figure it out myself" sort of person, so didn't have any 1:1 coaching related to brain retraining or nutrition in the thick of my healing journey. But I recently started out with a nervous system coach, and this has been really helpful for me. I think having an outsiders perspective can be so valuable, and I'd definitely recommend looking into working with a coach if it's feasible for you (especially if you're struggling with your brain retraining journey). But it's certainly possible to find healing without one, I know many people that have, myself included.

In Summary

Brain retraining has completely changed my life and brought me so much healing. So much has changed over the last few years in all the best ways!

My focus lately has been on processing trauma and learning how to navigate life after chronic illness. It certainly isn't easy, but it's so, so worth it. Grateful doesn't begin to describe how I feel when I look back on all I've been through and what my life looks like now. It's better than I ever could have imagined.

Personally I believe brain retraining and nervous system work can benefit everyone, no-matter the life situation, condition, or diagnosis. Learning how to regulate your nervous system will undoubtably improve your health and life, and make you more resilient to handle whatever life brings.

If you are really in the thick of it with chronic illness right now, you are not alone. Keep believing healing is possible, my friends. My story isn't unique, so many people are recovering! I'm rooting for you and always hoping all the best for you.

P.S. I have lots more content about my healing journey on instagram and my youtube channels (@RibeyeRach & @HealingWithRachael). It's my goal to create as many free resources as possible for those healing from chronic illness.

Some of the links in this blog post are affiliate links! This basically means that if you purchase something through a link, I might receive a small commission (at no extra charge to you). Please know I will always be 100% honest when sharing about products. Thank you so much for supporting my blog! ❤️️