Lymbic Downregulation

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LYMBIC DOWNREGULATION!
There's a lot 'out there' about the Lymbic system and ME. Has anyone found any of it helpful/work?
I'm not necessarily meaning expensive brain retraining programs but cheaper simpler ways?
Thanks!
๐Ÿ˜€
 
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Hi! For me, brain retraining is really the only thing that has ever moved the needle. I started out bedridden and getting very close to being unable to get to the bathroom anymore (I had a commode that I used sometimes). I am still housebound, but after brain retraining I can get all my own meals (previously they were brought to me in bed), and use my whole house, not just my bedroom. I also needed to be in the dark and wear earplugs all the time when I started, but I'm okay with light and sound now. I had been bedridden for 25 years, but I was also going downhill. It has meant the world to me to have these improvements--such a quality of life upgrade!

There are for sure free ways to do this! you could try EFT tapping (learn on youtube or Instagram), self havening, and just learning more about how the limbic system works, and about polyvagal theory. All of the brain retraining programs I have learned really dovetail with these strategies:

1. self care, by encouraging yourself through difficult moments, spending as much time as possible in a "happy bubble" with as little stress as possible--I know it's hard!! But with little steps, I think most people can make some progress towards that. It doesn't have to be perfect. :redface: And it's not forever, just until your brain heals. In polyvagal theory that is called ventral vagal state--rest, digest, and heal. Tapping and self havening can help you stay in that state for more time.
2. paying attention to your thoughts and noticing when they are unpleasant, then applying that self compassion and kindness and helping yourself through those moments, then getting back on track with your happy bubble when you can
3. setting aside time every day for complete relaxation, whatever that looks like for you. Could be any kind of pleasant meditation, enjoying happy memories, spending time completely focused on an affectionate pet, etc. Get "greedy" and make sure it's really wonderful! You deserve it and your brain needs it to heal.
4. for me it was tremendously helpful to notice and keep track of any wins I have in a journal (I just used an app on my phone)! I don't mean symptoms disappearing (although those too! ), but little shifts in mood, times when I brought myself back to ventral vagal, and even noticing my mental state so I can intervene. You can't stop something you don't know about, so noticing is actually a huge win, and it took me years to get good at that. But it's been SOOO worth it! Hopefully you'd be a quicker study. ๐Ÿ˜‚

Teaching your brain to fully relax and heal you is a process, and it's important to have encouragement to keep going. ๐Ÿ’• it might be a few months before you notice any changes, so I recommend expecting that and deciding ahead of time how you will help yourself through any times where you need motivation to keep going. And if you decide to try this defiantly enlist support from family and friends!

It might sound like brain retraining is about psychological stuff, but it is not. It's about having a slightly wonky limbic system, a brain injury, and the only way we really have to influence that is by spending more time feeling good.

Being in ventral allows our body to heal *in general*, by teaching our brain that it's okay to chill out and heal the body. Might sound kind of *ss backwards ๐Ÿ˜‰, but I know a lot of people besides me who have been helped.

There's too much to write here, but those are some starting points! Personally, I feel like I needed the structure of a program to keep me on board with those kinds of things 24/7. Also, there is a super supportive community for each program, which really helped me with ideas and persistence.

But other people have had success with just applying it themselves! If you're interested in trying, think it might be worth checking out some of my suggestions and see if any of them resonate with you. Also, if you are religious or spiritual I have noticed that it can really help to bring that higher power on board with your self-made program.

You don't need to go full bore like I described, but I think for me it was necessary to spend a ton of time on it in order to get better. You could just try out a few things and see if you like them, ESPECIALLY if you feel like any of what I described might possibly make you worse!!!! You do NOT want to trade your health for more time doing a program--it won't fix your brain (because it's stressful), and of course it's dangerous with PEM. So, go very gently, and honor your own journey! Good luck. ๐Ÿ˜Š
 
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Hi Koli
I was ever so touched that you took the time and energy to write this very helpful lengthy reply.
I too am bed bound (as you were) and I have been for many years sadly. Please could you give me any helpful links or book recommendations for limbic downregulation and poly vagal theory? I would be very grateful :)
Just out of interest which brain retraining program did you do?
Thank you x
 
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Yes, I will look for some for you and come back to this! I did the DNRS program first, and then later I also did the Gupta one. I am the most knowledgeable about DNRS. They're extremely similar--I only did Gupta because I was wanting to delve more deeply into this kind of work to make sure I was getting all I could out of it.

I was EXTREMELY suspicious of these programs. But I had an ME friend (also bedbound) who wanted to try DNRS but wasn't able to look into it herself. So I thought, heck, I'll just get the program and find out what it's about and then I can tell her! Haha Since the programs don't really tell you what they are about without buying them, we wanted to know what they were. So I was SHOCKED when it actually allowed me so much improvement!

When I had been doing DNRS for a few years (still improving) I took a zoom class they offered, which is kind of like a support group--you have a teacher and 25 students. you get to ask questions and hear everyone's else's experience. It lasted 12 weeks, and at the end my class decided to start an informal support group and continue meeting on zoom without our teacher. It was there that I learned a much more expanded view of the work we were doing--about polyvagal theory, parts work (IFS), etc, because my fellow students took classes on those subjects and shared about them in our meetings!

It took me a while to get the hang of this, but in this kind of work psychological and physical experiences really kind of merge. Having been in the ME/CFS community for so many years, I had drawn a thick line between my illness (physical) and my emotional state (not ill, luckily I had not suffered much depression or anxiety as a secondary problem). That was of course because I didn't want a doctor to decide it was all in my head!!

But through these programs and just all the work I have been doing, I have needed to gently, over time, toss out that idea that they are seperate. Because I am just one being. And the fright or flight state has thought patterns that go with it, like "I have to fix this! This is not okay! It must change!" (Which obviously anyone would feel when sick in bed year after year!) And working with both the emotional and physical aspects of my "wired" sympathetic nervous system *together* has really been the way forward for me.

So you may see that phsychological stuff come up in my links, and please don't worry that I think your illness is psychological! It's just that calming our emotions, helping ourselves relax and feel safe, can allow our BRAIN and hence our body to start functioning a little better. Sometimes a lot better!

I'll go find some links for you! I hope you have a good day today. ๐Ÿ’•
 
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Hi! Okay, this is a lot, so please take care and pace yourself as needed. ๐ŸŒธ

Here's an overview of what brain retraining is and how it works:

https://neurolaunch.com/brain-retraining/

Oh, one more caveat: I know CBT has been used harmfully towards people with ME, and I totally get any resistance to the concept of it being involved here. But the people who created these brain retraining programs did take *some* ideas from CBT and adapt them to use them in their programs, in ways that are actually helpful. So, just try not to focus on that if you find it triggering--it's not really important. ;-) Just focus on what YOU find helpful, and do that. :)

By helpful, I mean, does it make you feel relaxed and comfortable? Do you feel supported and cared for? Those are the kinds of mental states we want to encourage.

So, the basis of all these programs is the idea of neuroplasticity--the brain's ability to change. Trying to change your brain on purpose is called self-directed neuroplasticity, and that means we are trying to fix the way ME has (theoretically) messed up our brains and made them really bad at regulating our bodies: insomnia, light and noise sensitivity, headaches, flu symptoms, not being able to manufacture energy even with constant rest, feeling sicker when something stressful happens, poor immunity (like persistent viral infections), etc.

You don't have to believe that any of these symptoms are caused by a brain impairment. I didn't!! If it's going to work for you, it will just work by *consistently* (and gently) applying whatever program you develop or follow. It takes a lot of repetition for the brain to learn a new way of functioning. But it's not totally new! Most of us had a time in our lives when we were pretty healthy, so it's really just reminding our brains how to get back to that.

Here is a Cleveland clinic overview of EFT Tapping.

https://health.clevelandclinic.org/eft-tapping

The interesting thing about tapping is that a lot of studies have been done about it! I haven't read them--I still don't really have the brain power for reading studies. ๐Ÿ˜†

Self-havening is another method for calming down your nervous system. This video shows you how. I personally absolutely love this video and all the affirmations, and I usually find affirmations annoying! Haha so this may or may not be your cup of tea, but it will teach you the (very simple!) technique anyway. :)

https://www.dr-eva.com/affirmational-havening

Here is a very simple overview of polyvagal theory:

https://sacredpathholistictherapy.com/what-the-polyvagal-theory-is-and-how-it-works/

In the case of ME, the main "trauma" may be whatever caused the brain malfunction in the first place, in my case a very bad flu that kept relapsing until I ended up with ME. So it doesn't have to be emotional trauma. (But it can be! And it can be a collection of different kinds of traumas, like now I definitely can see how being bedbound for decades had also been pretty traumatic for me, even though I adapted well...)

The parts work/Internal Family Systems aspect of all of this is what I would consider more "advanced" brain retraining. I would suggest revisiting that later, after maybe a year or so? But here is an overview:

https://www.psychologytoday.com/us/...how-parts-work-helps-us-get-to-know-ourselves

So, I know this is a lot to take in, and may seem vague. But I hope it gives you somewhere to start.

You can look back at my first post and remind yourself what the main parts are of most programs: happy bubble, staying calm and relaxed, self care (emotional and physical), tracking your progress with doing the program (like progress means you worked on it on a given day, not necessarily that you have improvements. you change your behaviour first, and then your brain changes over more time), not pushing yourself too hard, noticing unpleasant emotional states and bringing yourself back to your happy bubble as well as you can. Gentleness, self compassion! Self encouragement, and encouragement from anyone you think might support you...like that!

Other potential resources:
I have heard, but do not know for sure, that some libraries have the instructional DVDs from DNRS or Gupta, so that may be another free resource, if you have access to your library. Mine has an online catalogue now, and I think there are volunteers who can bring materials to housebound people? Or maybe you know someone who would be willing to make a library run for you.

Oh! And if you are into Facebook, I think there are also Facebook groups on brain retaining (in general, no specific program), where you can join for free and discuss these topics with people who are also interested in them! That might be a good resource. If you're interested, let me know and I will ask around to see if I can find one. I believe on those kinds of groups sometimes people give away DVDs that they don't need anymore.

Good luck! It's fine to ask more questions. I'm sorry my posts are so long, but there is just so much to cover. ๐Ÿ˜‚ Sending you my best wishes! ๐Ÿ’•
 
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Hi Koli
Thank you so much for spending the time finding and collating all this info, I'm ever so grateful. I'm sorry for taking so long to get back to you.
I look forward to reading the links you so kindly shared. Please don't worry about offending me by posting links about psychological resources. I have read 'Wired for Healing' so I understand the concept of calming the limbic system.
 

sb4

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@Koli This is a very good write up. Thanks for posting it.

What would a typical daily routine look like for one of these programs.

Like:
In the morning do 10 minutes Self Havening
At noon do 10 minutes EFT tapping
Etc.
 
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Yeah, something like that! In a lot of the programs you're encouraged to do an hour total of their core limbic system downregulation exercise daily, so you could shoot for a total of an hour if you wanted to. It can for sure be broken up into smaller amounts, and you could work up gradually as you (hopefully!) recover more abilities.

I liked to do 30 mins as soon as I woke up, and 30 mins before dinner. Getting a big chunk done in the morning meant I knew it wouldn't get edged out by other things, and I found it hard to practice after dinner when my motivation was lower (from being tired). I would set an alarm for the before dinner part, so I wouldn't forget.

So think starting with the ten minute increments would be great! As long as that's within your capacity healthwise. the other aspects, like the happy bubble and self care, and avoiding stress, would be 24/7 (within reason!!) And you want to *very gently* course correct when you find yourself coming out of the happy/relaxed state. Soo...

* notice when you have down parts of your day--if something happens or some thought upsets you. Do a little more regulating then (tapping, havening, etc), like self care top up! Just do that for a few minutes and then move on with your day. It's okay if you don't feel much/any better (emotionally or physically), that will happen over time as your brain changes. The important part is that you interrupted your brain's reaction to those things, so you're giving it the *consistent* signal that everything is okay and it can drop back down into rest, digest, and heal.

* fill your time with relaxing/enjoyable activities as much as possible. Think about what makes you feel good, and schedule that in! For example, sometimes as soon as I get up in the morning I do a web search for fun, funny, or just "feel good" movies, then I watch one right after lunch. If I didn't do the research in the morning, I would be as likely to follow through. So plan for the things that will lift your mood.

I have also found it super helpful to just develop an attitude of self care towards myself, like encourage myself (out loud! lol) when something is difficult. Something I still do is when I'm doing something hard is I tell myself "good job, Koli! Almost done!" Even if I'm not almost done. ๐Ÿ˜‚ Because for *me* that feels encouraging. Another person might feel like that comes off false or insincere, and then they could experiment and do whatever they find helpful. :)

here are some more quick regulation techniques I learned about recently, which would be good for the course correcting:

* stamp your feet on the floor, saying which foot as you do it "left, right, left, right." (Or on your mattress, or whatever--the important part is that you are switching sides of your body. You could instead pat your hips on alternating sides with your arms at your sides in bed, "left right left right")
* take ten deep breaths, focusing especially on the exhale
* press your tongue to the back of your front teeth pretty hard (I prefer the place right behind them, like when you say "duh")
* sit down and feel the weight of your butt in the chair (I lie down and still focus on the weigh of my butt)
* eat protein--if you're craving carbs and sugar, just mix protein in with that. Protein is another calming signal for the brain.
* wash your hands and feel the water and soap on your hands (calming warm water)
* get a tight hug if you can. If not, back into a corner so the wall is "hugging" you, and then wrap your arms around the front of you to complete the hug. The idea is to feel pressure all around your torso, which calms the nervous system, so this could be done any way! Wrap your covers tight enough that you can feel them. :)

And here are some I suggested to a friend who is really struggling with depression right now (so, they are short and very low effort). It's things he likes. Alphastim is a tVNS (vagus nerve stimulation device). They are expensive, but if you already have one or could borrow one, they can also be great nervous system regulation tools. (El is his beloved and adorable niece! Maybe you have someone whose picture would make you smile?)

* use alphastim for very short time like 30 secs, or just put on the clips and don't turn it on. Some kind of baby step ๐Ÿ‘ฃ
* set a timer and look out the window for 2 minutes (I have been doing this in the morning! It's nice)
* start watching a blooper video, timed if you want
* watch 5 minutes Mr Bean
* drink some tea and notice how it smells and the warmth of cup in your hands
* look at pics of El for one minute
* notice one sensation in your body that is not pain (mindfulness)

I just want to repeat that at first it will likely seem like this isn't doing anything. That is 100% normal--this process takes time, so keep track of what you're doing as your "early wins"! It is a huge win just to be making any headway at all in *implementing* a system!!

I kept extensive notes every day, just celebrating every time I did my practice, or caught an unpleasant thought and did something about it! Lifestyle change is a lot of effort, so just spending some time making a plan (like reading this, taking notes on what might work for you) is a huge achievement worth celebrating!! Like I said before, i recommend making a plan for how you will encourage yourself and keep up your practice, because it's really key to be persistent, and that can be hard when you're exhausted and sick. But you can do it!
 
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sb4

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@Koli Thanks for the large write up.

I like the idea of splitting it into 20/30 minute chunks. Makes sense to front load it earlier in the day then do top ups later if need be.

I've made a list of limbic / polyvagal things that I'll focus on in these chunks:
  • Breathing: Calm, even, belly, slow, whilst thinking happy and relaxed.
  • Laughing: Yoga laughing, force fake laughing.
  • Stretching: Loosen up tight muscles and poor posture.
  • Socializing: Talk to friendly people, use your facial muscles and try to enjoy conversations.
  • Relaxing Music: Listen to disney songs.
  • Smile: Visualize joy, happy memories, and force a genuine smile.
  • Self-Compasion: Don't beat yourself up. Repeat phrases like "I am safe."
  • Rocking: Rock back and forth to release some energy in a calming way.
  • Self Havening: Across the brow, Around the eyes, Gentle Moving Hug, Washing your hands.
  • EFT Tapping: Face Points, Karate Chop Point, Below Last 2 Knuckles, "Even though I'm experiencing stress in my body, I choose to be peaceful and relaxed."
I think I'll use youtube guided videos to help me through these exercises, should help with timing.

I like your idea of going out of your way to find funny / happy things like bloopers and comedies. I should definitely start doing this. The other little suggestions like looking out the window for 2 mins and noticing a sensation in your body that isn't pain are great too.

I think the main issue for me will be sticking to it whilst not getting results but I will give it an honest try starting now. :)
 
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Yes, yes, yes!!!! That looks like an AWESOME plan. Nice job! ๐Ÿ‘๐Ÿ˜
I had a stressful event recently and I made a sign (just on a piece of printer paper) with a list of things I can do to help me regulate my nervous system. That has worked well for me, and it makes me smile when I see it.
 

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sb4

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@Koli I really like your sign!

Yesterday I did an hours worth of EFT Tapping, Self-Havening, Looking out my window, and thumb squeezing. I think it helped a little.

I have made a html page with similar messages on that opens up whenever I press the new tab button as a reminder.

polyvagalPage.png
 
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Hi @Koli
I meant to say how amazing you are at explaining this stuff by the way:heart:
Also would you mind telling me if you are in the US or the UK please? It's just with what you were saying about DNRS DVD's being in some libraries I wasn't sure which country this happened in. I'm in the UK you see.
I would be interested in a brain retraining Facebook group if you could ask around for me please (as you kindly offered in a previous message). That would be wonderful when you are feeling up to it.
Thanks very much for your kindness.
Take care.:)
 
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Hi! Thank you very much! I'm so glad. :) I'm in the US.
* Here is a Facebook group, Neural Retraining Friends.
* I checked my library and it doesn't have either program, unfortunately. So maybe that's not a real thing.
* I have seen DNRS or Gupta Program DVDs on eBay, but I don't see any cheap ones right now in the US or UK.
* I searched eBay for previously sold items, and it looks like sometimes the Gupta program at least can be had for ~$40 (ยฃ32). It seems like it's easier to find that one than DNRS, and the Gupta program is actually from the UK, so that may be even more true there.

If you can find a transcript of either program, that will contain the whole program and you wouldn't need the DVDs. So whatever you find that is cheapest should work, unless you learn much better from video than text. Be sure that what you buy for DNRS says "transcription book" because there is a similar looking "student manual" that does not contain the full program. Although it would be nice if you could also get the manual! Sometimes people sell sets.

Another consideration is that both books are rather large and heavy, so might be a challenge to hold them, depending on how you are affected by ME/CFS. They are spiral bound.

There is another popular program I haven't tried called ANS Rewire. It's possible you could find a used version of whatever their teaching materials are. :)

Before I tried DNRS I watched videos from both programs on the websites or YouTube. You could try that and see if you feel more of an affinity for one or the other. To be completely honest, I went with DNRS largely because it didn't really mention ME/CFS much. I thought I would have more resistance to a program that claimed to heal CFS, because I had been disappointed by so many other treatments before. I just thought DNRS would be less triggering, and for me it was! Haha

I noticed you can get a free trial at the DNRS site, and I signed up for that to check it out for you. It's not the full program, but there are a lot of videos you can watch and see what you think. It may be annoying to see some of it but not really get to the full program. You don't have to give out any payment information to do the free trial, just an email address.

Gupta has a lot of videos on YouTube. Here's a link to the first few videos from his program. You can see if you like his vibe. I find him kind of dorkily comforting. ๐Ÿ˜‚ He also has a free app with some of the meditations from his program. It's called The Meaning of Life Experiment.
Take care! ๐Ÿ’•
 

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One last thing: when I bought the DNRS program it was on DVD but now they use streaming instead. However you only get access to it for one year! Boo. I wrote to ask them what happens if you need more than one year, and I'll let you know if they answer. With the Gupta program you also get one year, but you can renew it for $50 a year. Not great, I know!! I'm glad I got print versions of both programs so I would have them. Wish these darn things weren't so expensive. ๐Ÿ™„ And the transcriptions aren't sold by themselves, you have to buy the whole program.
 
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sb4

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@Koli Thanks, for checking up on me!

Unfortunately I've been downward spiralling for a while now and it's continuing. Since I last posted here I've spent 90% of my time on the couch downstairs with my mum (who is also ill). I don't want to freak her out by talking out loud to myself and such so iv just been doing bits of tapping and havening here and there when she leaves the room.

I've watched a few news blooper reals now, they're always good to cheer you up.

I figure whilst I'm watching tv with mum I can practice the social engagement side of the polyvagal theory. Have you heard of this Koli?

How are you getting on?
 
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Darn, I'm sorry to hear that! I hope your body can stabilize a bit more soon. I'd love to hear more about social engagement polyvagal stuff. What do you do?

I also had a setback! One of my EDS injuries is my abdominal muscles, and I accidentally made those worse by doing a ton of laundry. So I am definitely putting all my mood elevation skills to work to keep my spirits up as I wait for more stability over here too, ๐Ÿ˜† I'm watching a lot of cheerful and mellow Disney movies, and a relaxing British tv show called Father Brown. It's a murder mystery but VERY light on the murder, heavy on the small town charm and kind, gentle characters.
 
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