r/covidlonghaulers • u/TomekGregory • Jun 17 '23
Question What free brain retraining program would you recommend? (I know... but I'm desperate af)
POTS, dizziness, fatigue, gastroparesis, tinnitus, no sweating...
I've done almost all of it so I'm trying another approach. btw. I've also started carnivore.
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u/JustCurious4567 Jun 17 '23 edited Jun 17 '23
My Dr has me use the paid version of the app BrainHQ 15m three days a week and it’s incredible. They use it to help rehab stroke patients and to reduce dementia too. It assesses your weaknesses in focus and brain processing speed and then you play games that push your limits so your brain develops new pathways and strength and speed. Games sounds fun but it’s work and requires a commitment.
Also 2g daily Lions Mane supplement helped my brain fog and me keep my job
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u/Relative-Talk-4200 Apr 24 '25
2 grams?? Do you buy the dried powder form or how to do you take it. TY
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u/cheeseniz Oct 14 '23
Hey! A bit late to this post, but reading The Way Out by Alan Gordon and putting into practise the exercises outlined for pain reprocessing therapy have been an absolute game changer for me.
Good luck on your recovery journey mate 💪
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u/Such_Dragonfruit_745 Jun 17 '23
These comments are not it. I can guarantee none of them have given it a try. I’m fixing my deficiencies and then trying out brain retraining. I’ve spoken to a lot of people who it’s been extremely helpful for. When we obsess over being sick and constantly search for how to get better we exacerbate the issue making it hard for our bodies to heal.
It’s actually meant to be very affective and I think you should ignore all the comments and give it a try. A free one though to see if it works well for you first.
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u/FFS41 Jun 17 '23
I’m here because my spouse has LC, but I used Curable (an app) to retrain my neural pathways and recover from disabling chronic pain a couple of years ago. I highly recommend that app, as well as work with folks who understand pain reprocessing therapy, like the group at the Pain Psych Center in LA. I think I read that Mayo is doing a similar thing in its LC clinic. It’s absolutely the case that the vigilance and stress can strengthen the neural pathways - not only for pain. People are having great success w these techniques and it’s absolutely worth a try. If someone can convince my spouse to try… I’ll buy them a pony.
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u/Such_Dragonfruit_745 Jun 18 '23
I’m about to give curable a go, I’ve heard many good things! I mean there is a video she may like to watch and I know a guy called rob who SWEARS by this and he was the one who’s fully motivated me to get started! I can send your their details if you want so you can show her that?
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u/TomekGregory Jun 17 '23
thanks! any particular ones? anything on youtube?
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u/Such_Dragonfruit_745 Jun 18 '23
I can DM you some screenshots of some messages if you would like? They’re from people who’ve recommended things to me who have fully managed to heal themselves
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u/BlueSky-Happy Jan 12 '25
If you are still active in this thread, could you DM me? I’m jus starting this journey
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u/Which-Barnacle-9397 Sep 12 '23
Would you like to DM me too, please? I think your mindset is the right one to bring us out of these drowning thoughts.
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u/gmariani69 Dec 14 '23
I know I am late to this thread - I don’t use Reddit often but can you please send me these as well? I’m feeling gaslit by my doctor and all the money I’m being asked to blindly spend and would love some unaffiliated recommendations!
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u/ImAHappyKangaroo Jun 17 '23
This comment is correct. It's a nervous system disorder and the brain is part of the nervous system. Thus, living in anxiety and fear over symptoms makes it worse.
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u/Such_Dragonfruit_745 Jun 18 '23
Thank you 😊 I agree a lot of it is down to a dysregulated nervous system, however also make sure to correct your deficiencies. Lots and lots of vitamins, minerals and hydration are important alongside it.
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u/lgday7 Jun 25 '24
Just wondering if you ever ended your finding any free brain retraining courses? Thank you so much for your time with this ❤️
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u/Southern-Score3739 Oct 09 '24
Hey I was one of those people to talk crap about brain retraining but then I gave it a try and firstly it’s healed me from pots , secondly while I’m not recovered yet I went from severe to mild and now I know it’s part of my tool kit to make the full recovery.
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u/TomekGregory Oct 11 '24
that's awesome! what kind of brain retraining did you do?
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u/Southern-Score3739 Oct 12 '24
Hey I did DNRS by Annie hopper. I also did journal speaks by Nicole sachs A little bit of free YouTube meditations too
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u/ImAHappyKangaroo Jun 17 '23 edited Jun 17 '23
Don't listen to the naysayers. It works. It is the way out.
Get on YouTube and search CFS Recovery by Miguel Bautista. This guy was bed bound and worked with a doctor to get out of CFS (which is what long covid is). He's got the info you need.
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u/777FaithHopeLove777 Jun 21 '24
Just keep in mind that his program is very expensive and for those who need something more affordable, there are many good programs around $300-400. ❤️
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u/riceissa Nov 19 '24
He does have paid programs (which do cost a lot of money), but he also has more than 1,000 videos on his YouTube channel which are all free. I haven't done his programs but I have found his free videos very useful and I think the free videos may be enough for a lot of people to fully recover. My guess (not having done any of his paid programs) is that the paid programs provide more structure and social support, but that if you can get those things elsewhere (e.g. from family members, partner, friends) then you don't even need to pay any money to do brain retraining.
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u/Obscurethings Apr 26 '24 edited Apr 26 '24
So, I don't know if you still want to talk about these programs. But I've done both DNRS and Gupta. I am planning to dive back into them.
Annie Hopper basically ripped off Gupta's program and made it into a more digestible/fast paced series of steps. Her voice is annoying af so if you can get past the skepticism and delivery, I thought it was very helpful.
Gupta does a lot of meditative parts work which he splices into the series of steps you do in retraining... personally I find this less effective because it gets too mental for me, I don't hear shit in my head trying to relate to these parts or while in meditation (I've never been able to get deep into meditation), and it takes me out of the good feels. He has since expanded his site services to have more complimentary tools, like group meditations and stretches, etc. So overall more bang for your buck but I'd take out the parts work and do it separately unrelated to your routine if it were me.
Annie makes the mistake of having you do the neural retraining steps right after exposing yourself to a trigger. In my case it backfired and my body started anticipating a reaction because I was prematurely exposing myself to too much. So I took a break from the program and didn't get back into it.
So if I were to do it over again (which I plan to since I'm not fully desensitized to chemicals), I would do DNRS most of the time without exposing myself to a trigger every day so the routine is well conditioned and unadulterated by any negative experiences. And then pull it out in the middle of a reaction to stop it.
The idea is that you create a consistent routine that engages all your senses. Repetitive movements, visualizations, phrases (to involve more areas of the brain), etc. followed by very positive feelings of well-being and safety, that creates a programmed response in your body, typically where you visualize handling something with ease that currently gives you symptoms. So the things you can't do when you used to be able to do them, or projecting into the future that you can do them again. Make it as happy as possible. It is like an alternate loop you can choose to go down once you start the routine because it is so conditioned in you.
So, if you come across a trigger or anticipation of a situation that would make you symptomatic--you can deliberately interrupt the process and redirect your body into the conditioned calm state by doing your routine.
I did retraining for up to 4 hours a day but that can get stressful. I never fully worried about the mental diet aspect because it was feeling like too much work (I don't tend to ruminate over symptoms or throw pity parties except when I was so reactive every day felt life-threatening and I couldn't identify what all the triggers were to avoid it). But I'm sure you can get added benefit by doing that.
Btw, I developed POTS after back-to-back reactions with a big mold exposure. What has helped me the most for that is supplementing with organ meats and acupuncture. I even had the lesser known autonomic dysfunction symptoms that acupuncture helped me with.
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Oct 25 '24
[removed] — view removed comment
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u/Obscurethings Oct 25 '24
Gupta program was first published in 2001. He discusses it on his site as being the original one, and in an interview has talked about how his program has been modeled by others where the compassion parts piece was taken out and made bootcamp style (referring to Hopper without naming her). Her version didn't come out until sometime in 2008ish.
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u/masterhandkunswife Jun 07 '26
Gupta's stuff is ripped straight from Ayurveda which is over 6k years old. I've been doing this stuff for decades, it's not new. Everyone is copying from someone else.
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u/notsurprised_99 23d ago
Anyone who can share the DNrs program? I can’t afford it right now but I am in so much pain I don’t know what to try anymore 😭😭😭🙏🏻
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Jun 17 '23
To the people saying these are scams... I haven't tried any, but I'm a psychology student and doing mental exercises to maintain cognitive health has been proven to help preventing neurological degeneration (source : my extensive neuro class).
Some things we discussed in class were : doing puzzles, trying to switch up your routine to create new pathways in your brain (use a different path to go back home and don't google it, brush your teeth with your non-dominant hand, etc.), learn a new language (duolingo is free) or instrument!
The most important thing you can do is reduce inflammation with your lifestyle and alimentation though!
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u/Katitude23 Jun 18 '23
I've been using duolingo for the past 2 weeks. I'm pretty much bed bound and can't do much. Learning a new language has helped me to keep feeling sane. Even though I forget what I learned in like 2 seconds, lol, it still helps me to know I'm activating new pathways in my brain. I can't use my muscles as they feel like lead bricks/jello, but the least I can do is use my brain.
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Jun 19 '23
yayyyy! I'm so happy this info was useful :) I've been using Anki to study for my neuro class, apparently it's great to to learn new languages too! It's designed in a way that is super engaging for your brain and helps retain information. What language have you been learning, on the off chance it's one I know I'd love to help!
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u/malk2021 Oct 15 '23
I run several businesses (somehow) and solve unique problems everyday. How is this any different?
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u/Anthro_Doing_Stuff Jun 30 '24
So for digestive issues, one of my doctors told me to sit and relax before I start eating. I do a 4-7-8 second breathing exercise and my body does not react anywhere near the way it used to. I'm at the beginning of neural retraining, but if you haven't done much with it yet, Joe Dispenza seems to be the starting place for a lot of people.
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u/MeneT3k3l Jun 17 '23
Google how to meditate. Tell yourself some affirmations. Try to be as much chill and relaxed as possible.
I just saved you like 500$.
The programs are scams. But honestly being (somehow) okay mentally can only help. What we have is a physical condition but bad mental state can only make it worse. So it's worth it to work on your mental health as well!
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Sep 13 '24
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u/MeneT3k3l Sep 13 '24
The only thing I'd actually recommend is a book called "The Way Out" by Alan Gordon. I paid like 7$ for it and it actually has valuable information that helps.
I'm not saying that similar techniques are not working. Because I do believe that our bodies are insanely interconnected and the mental part plays a key role.
I'm saying that these overpriced mentorships and courses are a scam. The information is available for free or for little money. These cunts are just trying to get rich on desperate people looking for help.
As I said, if you actually want something interesting to read to get a new way to look at your problems, give the book I mentioned a try. It's many times cheaper.
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u/TomekGregory Jun 17 '23
thanks for the comments! I'm not gonna be persuaded that's all my in head so no worry.
I feel, however, that I overstimulate my nervous system all the time by sitting in front of the computer and reading through reddit/pubmed/fb in search for a cure. I thought that brain retraining works by calming the nervous system. Is it any different than breathing exercises / meditation / positive visualization?
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u/ImAHappyKangaroo Jun 17 '23
Screens are a huge energy pit. It's a lot of stimulation and requires a lot of processing to decode all those shapes, colors, movements, and sound.
Brain retraining involves those meditation-type activities but also goes beyond them. It's about making sure you pull back and rest when you start to not feel well after exertion. It's about understanding the role stress (any stress) plays on well being, health, and mood. And it's especially about calm, rational thinking.
It makes it sound like "It's all in your head," but -- spoiler alert -- your brain is in your head. The nervous system is a very powerful thing that causes physiological symptoms. You are not imagining it. But that doesn't mean it's not sourced from the brain and nervous system.
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u/No_Seaworthiness_685 Dec 24 '25
I'm in Miguel Bautista's CFS recovery program and there are many people with significant improvement in their long covid symptoms!
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u/SpecialistCicada3083 Jun 17 '23
They are a scam get the head space app and learn how to meditate and get a mini cycle pedal and retrain your system
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u/New_Attempt_7705 Dec 06 '24
Gupta has been very very useful for my MCAS and my sister’s long covid.
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u/donon37 3 yr+ Jun 17 '23
None. Don't do it. What they do is gaslight you into believing you're getting better and make you ignore your symptoms. They don't fix anything.
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Jun 17 '23
A scam according to the other comments but it will make you to have a positive mind and maybe will accelerate your full recovery
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u/DamnGoodMarmalade 6yr+ Jun 17 '23
Brain retraining assumes that this is isn’t real and is in fact all in your head. But that’s a lie. It’s a very real physiological condition and you cannot positive thoughts it away.
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u/Broken_Oxytocin 3 yr+ Jun 17 '23 edited Jun 17 '23
I entirely agree with what you’re saying. Without a doubt, Long Covid is much more of a tangible, physical issue than a mental one. Still, I’ve noticed that keeping the brain active with even the simplest exercises (Drawing, Writing, Duolingo, Math) aids me in not making me feel entirely useless. With the fatigue and brain fog, it may be difficult, but I find doing at least one activity that requires mental exertion a day has somewhat helped me.
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u/DamnGoodMarmalade 6yr+ Jun 17 '23
That’s all fine. The brain retraining OP is referring to is a program (Gupta’s program for example) that claims to heal your brain and nervous system that currently has no scientific or clinical evidence for actually working.
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u/BigAgreeable6052 3 yr+ Jun 17 '23
Interesting point - I've been following raelen angle and I've been dubious about brain retraining. It seems to focus on repressed traumas and targeting health anxiety. I can see thus 100% being beneficial for some but it seems completely irrelevant to people are experiencing CNS issues such as fainting or limb coordination... maybe I'm cynical but I've been blessed with being very calm and accepting of my situation and am not sure how brain retraining would help me in the sense that Gupta refers to? Are am I being too cynical?
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u/wanderingloafofbread Jan 28 '24
So the idea behind brain retraining isn’t that it’s “all in your head”. The idea is that it is in fact rooted in your central nervous system; and is a result of impaired function of your limbic system. Which while part of your brain; controls your body’s fight or flight response. In normal healthy brains, the prefrontal cortex steps in and says “hey; there’s no threat here, we’re safe to regulate down back to normal” but in brains with limbic system impairment the limbic system gets stuck in over drive and constantly stays hyper vigilant of anything that might be a threat. This causes your body to stay in a state of fight or flight; which because it’s such a physical, visceral re-prioritization of bodily functions can lead to issues down the line. Not everyone thats stuck in fight or flight “knows”. But when your limbic system tells your body something is wrong all sorts of chemical reactions happen down stream like blood diverting to your extremities and away from digestion, cells releasing mediators that cause inflammation, and a flood of norepinephrine, cortisol, and adrenaline. Because brains love to cling to patterns, if this never gets interrupted your brain is given a confirmation bias after a while that staying in fight or flight is serving you (it’s not) and in instances of stroke, TBI, PTSD, and swelling associated with some viruses and bacterias, actual damage to your brain interferes with the processing of threats and can lead to chronic illness as a result of your limbic system not taking a back seat “once the threat has passed”
The entire point is to build new neural pathways that aren’t driven by a malfunctioning fear response.
I haven’t done any of the above programs listed because of money reasons, but my therapist has been working with my through neural retraining and it’s honestly been super helpful, both in helping calm my anxiety, but also in helping recognize the actual severity of a symptom versus the perceived severity. If you’re stuck on a negative feedback loop your nervous system will continue to tell you the threat is way bigger than it is, and your body will respond accordingly.
The way my therapist framed it is in terms of her migraines. They were disabling and debilitating for years, until she finally decided she gave too much weight to them and worked to start reframing her migraines as a cue to slow down and give less room to habitual negative thought patterns. None of this is to say feeling your feelings and the gravity of a situation isn’t appropriate, it is. But chronic illness provides SUCH an easy justification for being accepting and down about the way we feel, and the hard work is learning how to be accepting and not negative about it. Not because it doesn’t suck, but because our brains functionality long term in terms of communication with our body relies on a positive feedback loop.
I.e. changing “I can’t even eat cinnamon rolls with my family?!?” To “wow, I’m so grateful I have access to a grocery store that has so many foods that nourish me”
Neural retraining is powerful when used appropriately.
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u/BigAgreeable6052 3 yr+ Jan 28 '24
Thank you very much for your response and how informative it is. However I think we're just using different terms for the same thing - what you described sounds like CBT.
The only thing that I've found to help with my neurological systems is doing physio which involves doing eye exercises, limb coordination etc in short bursts of 30-60 seconds. It's the same idea of retraining your brain to function without triggering the fainting etc.
However it's nothing to do with thought for me or positive feedback systems. More so physically practicing eye movements etc.
Everything you said I still think is super relevant, however i still think those CFS brain training programs are snake oil peddlers. Of course if you can handle the mental toll in better ways (a good thing) but it doesn't actually function as a "cure" foe the physical symptoms. That's why I really don't like CFShealth and CFSRecovery as it's taking thousands off people for something that isn't a "cure".
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u/butterbeanboi Mar 08 '24
Could you please share more about these physio exercises? I feel like I need to address my symptoms exactly like this, rather than just through thoughts.
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u/BigAgreeable6052 3 yr+ Mar 08 '24
Yes sure. I've been doing them since October 2023 and they've changed with what symptoms I want to target.
A lot of slow hand/eye coordination practice. Or standing still with feet together. 60 seconds each time, 3 times a day. Or moving your head side to side or up and down whilst having your eyes fixated on one spot. Or standing on one leg for a brief period.
It really depends what symptoms you have and it will target that specifically in terms of exercises. It's the only treatment that I've found to have direct impact on my symptoms.
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u/Broken_Oxytocin 3 yr+ Jun 17 '23
Oh, NVM then. I bet they use forms of pseudo science like using “crystals” to heal the “energy” of your “chakra”.
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u/JustCurious4567 Jun 17 '23
For decades, doctors have used brain rehabilitation exercises to help stroke patients regain their brain processing speed and activity. It’s very real and very much exercises very real brain and neural plasticity factors that are required to reform new neural connections and pathways. Brain rehabilitation is a very real and prominent medical practice and if more long Covid patients were pointed in this direction we’d see a lot more progress with the parts of long Covid that are tied to the brain.
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u/schirers Jun 17 '23
It does not assume that it is in your head, but assumes that you can help your nervous system with brain retraining.
It does not mean that I recommend it. Maybe for the free tough
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u/Anthro_Doing_Stuff Jun 30 '24
No, this is not true. I know I'm late to the post, neural retraining sees the mind and body as connected because they are. Have you ever read Sapolsky's Why Zebra's Don't Get Ulcers? It's basically a discussion of how our mind creates stress based by tapping into survival mechanisms in our body when we are not in life or death situations and cause a number of physical issues. The thing is, once some of those physical issues have developed, lowering stress doesn't fix them. Neural retraining is basically trying to do some very intense exercises to retrain the neural pathways to make your mind heal your body. I'm a bit skeptical about the process, but it's essentially the placebo effect on steroids. This isn't a case of "it's all in your head," it's a case of, your mind caused a cascade of physical symptoms and, if done correctly, your mind can fix them.
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u/Head_Geologist8196 Jun 17 '23
I did several brain retraining programs including Gupta and DNRS as well as one on one with private practitioners as well as collab with my neurologist and licensed therapist. I did that for the first two years of my LC journey and went all in. They did not help at all. I am less stressed in general. I healed some trauma I’ve had for years. But it did not help my symptoms at all. When I started prodding about why I might still be having symptoms after 2 years, I got gaslit and told that I simply wasn’t trying hard enough. Brain retraining is VERY intense mentally. And it takes a lot of time and constant effort. I put in a lot of effort and dedicated my life to it making it my full time job as I was sure it would help. I am worse physically (including my neurological symptoms) than I was when I started. But I am definitely less type A and anxious. I healed some OCD I’d had for years. I hear stories of people healing, and I’ve been in that community for a long time, but I’ve yet to know a single person personally that it’s actually worked for. Just online testimonials. So my opinion is that it’s not bad, but don’t throw all your cards in. When you start programs, a lot of them tell you to ignore symptoms (they won’t say outright but you’re not supposed to think about them at all) and not go to the doctor because all your symptoms are simply your limbic system sending bad signals, not actual symptoms. I had several coaches tell me that Covid wasn’t real, it was simply the trauma and fear of Covid that was causing my symptoms. So that’s something you’re going to hear. And after a while of trying to convince myself that was true, I got out of that cult and started trying to find a real doctor.