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Old 02-06-2019, 09:34 PM #31
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Default Re: Neurofeedback Therapy

Koru_Kiwi Oh, wow! That training with Sebern Fisher must have been amazing! I bet you learned so much... that's really neat that you were able to do that. I'm a little jealous Does anything stick out as memorable to you?

re: Keeping track of symptoms. I haven't done a great job with this. I do fill out a "training chart" for my provider, basically what I did (he puts new protocols there for me), how long, etc... then notes on my reactions. I have access to that, so I can review it at any point. But it's not really a day-to-day tracking of things, just reactions to training.

He also has me do surveys at night ("how was your day?") and in the morning ("how did you sleep?") - that have several questions to rate, and free form answers to just blab (though I wonder how much of it he's actually reading!) I don't really have access to those once I submit them though.

It's a really good idea... did you do it totally free-form, like a journal?

I need to give a little thought to how I can maybe make it useful, but also not repeat too much. I think it might be helpful, if I organize it (to avoid a huge wall of text), to jot things down during the day. I find it hard to remember things accurately over the course of the day... like I might be really miserable early in the day, but if I feel better in the evening, I tend to forgot the earlier feelings.

Thanks for the idea!

I don't remember seeing anything about sugar in the book, but now I'm curious. I struggle with sugar (forever, since way before NF) . One of the things I loved about the first protocol was that I felt less sugar cravings... I think I had more energy, so I didn't need the sugar to prop me up as much.

tree7car Hi! I'm really happy this is helpful! I wish I was further along and had great things to report but I'm still figuring it out, obviously! If you have an online provider list for your insurance, you might see if anyone is listed under "biofeedback" - I've read that sometimes therapists can get covered for "biofeedback", and will use that to bill insurance for neurofeedback (which is technically a specialized form of biofeedback).

I wish it was easier to find good providers, and easier to afford.

Progress

Tonight I finished the last test protocol. So the 3 were:
- C3 (left side of head) - made me a little depressed
- C4 (right side of head, using the right ear as reference) - super relaxing, but made me feel really lazy too, nice though!
- Tonight: Pz (back of head, hard to take pictures to get the placement checked!) - seemed to make me irritable. I'm unsure if it's this, or just the last couple days in general, since I've been drifting back to feeling kind of miserable and hating my life, and this seemed to just... mirror those feelings back, I think?

It was weird, because as soon as it started... I was annoyed/irritated by the sounds around me, the refrigerator motor was too loud and in the way of me listening to the reward sounds, the computer fan started to make noise, my neighbor was walking around and I could hear her. This stuff was surely going on during other trainings, but didn't annoy me nearly as much.

The plus side, the annoyance is also a tiny bit energizing... so I was able to pick up a little bit after, rather than just lay around and think about how I feel (ha!).

I check in with the trainer again on Friday. I might see if I can catch him on chat tomorrow and ask about doing the first protocol again, but for just 10-15 minutes, since I still think it had the *best* effects, and only made me sick b/c of the time. (Lowering the times on these last 3 has fixed the nausea, as far as I can tell.)
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Old 02-11-2019, 03:47 AM #32
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Koru_Kiwi Oh, wow! That training with Sebern Fisher must have been amazing! I bet you learned so much... that's really neat that you were able to do that. I'm a little jealous Does anything stick out as memorable to you?
meeting Sebern and spending two and a half days with her was such a fantastic opportunity for me (and my husband). there were less than 12 practitioners for the training session (which was organised through my NFB practitioner and his practice) so it was very small and hubby and i had quite a few opportunities to talk one on one with her. she shared some personal info about herself, including her own struggles in her past therapy with her psychodynamic T and how NFB helped her. i found what she shared incredibly helpful especially since i too was having struggles with my own psychodynamic T, many struggles that were similar to hers. upon ending the seminar, while saying good bye and thanking her, she offered me some touching words of wisdom and encouragement with a kind hug. i was touched by it.

the sugar reference may have been Sebern sharing some of her own accounts at the training session i attended. unfortunately, i can't quite recall if she wrote about it in her book or not.

it sounds like your T is doing a good job of encouraging you to take note of how you are feeling during and soon after training with the surveys. when i kept notes about my symptoms, it was more just quickly jotting down things as they popped up. i didn't go into great detail. the only things i would record in detail were some of the vivid dreams that would come up a night or two after a training session. to me, many of these vivid type dreams seemed to have some relevance to the what i was processing at the time and i would bring them to my talk therapy sessions to discuss further and explore the significance. i always wondered if the NFB helped to trigger or 'draw out' these quite vivid dreams.
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Old 02-13-2019, 02:16 PM #33
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Default Re: Neurofeedback Therapy

Wow, the Sebern Fisher training sounds amazing! I really like her whole approach - and I wish there were more therapists who also used neurofeedback. The way that she describes it in the book makes so much sense, and I'd love to have one person to talk through things with and do training with.

The idea that NF brought up more vivid dreams is really interesting! That hasn't happened for me, but since I'm still struggling to figure out what my brain needs, I'm not surprised.

It's been a bit rough here. It felt like those first couple of trainings had such a great effect, but that's wearing off, and I'm back to struggling with a lot of depression and tiredness. And headaches. Not fun.

I talked to my NF guy (he's actually a neuroscientist, not a T, so we don't really dive into T-stuff) last week and got a new protocol, but he encouraged me to let him know if there was any weirdness, and to not repeat it if it didn't feel good.

This time there were two parts, so I did C3-A1 for a bit, then C4-A1. The C3-A1 made me sick while I was doing it, though I felt better after C4-A1. It helped lift some depression... but since it had made me sick, I asked him, and he had me lower the frequency on that part, and increase the time with C4.

So, I did the revised version yesterday, and I'm still struggling. I'm starting to wonder what it's supposed to feel like, because I just don't seem to feel *good*, ever, when I wrap up. The C4 stuff helps, I'm sure, but again, anything positive has worn off. I woke up with a headache and being really tired, despite getting some extra sleep last night, and actually ended up napping a bit at lunch

Stuff with actual T isn't going really well for me either. I'm a really difficult/terrible T-patient (part of why I'm trying NF!) and we really just... don't seem to be able to get on the same page. I like her, and she likes me, and we keep trying - but as she says, there's this sense of *awkwardness* between us, even after a year and a half. So, that's also making me feel a bit sad right now.

Anyway, I'm trying to stay positive. I know that, especially with the trauma background, it can take a while to figure out what works for NF. I think I'm mostly just frustrated b/c the good effects at the beginning were SO helpful, and really want to get those back.
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Old 02-15-2019, 02:40 PM #34
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Ugh. Really bad day today, and it's getting harder to be hopeful here.

I talked to my trainer yesterday, and he was great, as always. I told him how much better I felt the first week, so we agreed that I'd go back to just C4 this week, to see if that can help boost things again.

Except - he still thinks I should lower it, just a tiny bit (11.75 instead of 12).

After the conversation, I couldn't sleep - because I was in a panic over lowering the frequency. This is the same site that we tried lowering, back at session 3, and where I ended up feeling completely *drugged* and non-functional, and didn't even recognize my brain until late the next afternoon. It was horrible.

I spent some time thinking last night, and decided that with the level of utter dread I was feeling, I don't think that I want to jump into lowering the frequency. Next session, I'm going to stick with what I originally had (but lowering the time, since that may have been the issue).

Those first sessions, even though they made me feel nauseous after, were literally the only ones that had any sense of feeling good - they're the ones where I was still excited to try again, looking forward to training, and getting really good effects otherwise. I felt brighter, more energetic, and like it was easier to get things done. Like, "my brain but better". And, now that's pretty much all gone... and I'm back to being depressed, miserable, and pretty awfully hopeless feeling. On top of that, I realized that I'm having way more headaches then normal... woke up with a really bad one today that is making it difficult to focus/work, so much pain.

So, I guess I just wanted to complain. I'm not sure why it's taking so long to find something that works. I'm starting to worry that maybe I should have gone with someone that has more of a psychology background, rather than neuroscience, since I'm not honestly sure how much he gets all the psych stuff - or if he's even interested in that at all. I like him and think he's clearly incredibly smart and experienced, but maybe he doesn't usually deal with fussy, anxious, depressed, traumatized, overly self-protective and delta-producing exhausted brains like mine?

It's been three weeks of trying... I just... had hoped it would be a little better by now.

The flip side is, I can't imagine doing this with someone in an office. After some of the reactions that I've had, I don't know how I would have safely gotten myself home. I like being able to do this at home, and to go to bed after if I need to!

What I really wish... is that there was a nice retreat type of place, near forests and mountains, where you could go for a couple weeks, get started with NF (and take equipment home with you after the retreat), have really awesome healthy food, cooking classes, nutritional analysis, hiking and yoga and exercise, maybe some form of socializing with other people, maybe some animals to cuddle up with (puppies!) - etc. Some place to go and get away from all the day to day crap that makes it even harder to focus on figuring this stuff out.

I'm glad it's Friday. But omg... this headache... is just driving me nuts. And I have a meeting at 4:30 my time, end of the day, on a Friday, and I really just want to be done.

Thanks for listening and letting me rant. I feel bad that I'm not a better advertisement for the NF - I really believe that it can be incredible, but I just can't seem to get it to work (yet) for me. And, I so want it to!
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Old 02-17-2019, 08:33 PM #35
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Default Re: Neurofeedback Therapy

More headaches today... not sure if it's from NF yesterday, or just stress (noisy dogs next door).

But, I looked through my notes from the last 12 days or so. 8 days with headaches. Of 12. I'm sort of freaking out... that's a lot.

I checked my notes (it's a food journal, but I tend to write down how I'm feeling and if I need to take any medicine) from just before I started NF.

Out of 12 days pre-NF, I had one definitely headache day, and one that might have been (I just wrote down that I wasn't feeling well, but no details). So maybe 2/12

It's possible there were more, but they weren't bad enough to write about... but still...

2/12 versus 8/12 is an increase of 4x!

I was planning to train tomorrow, but I think I'm going to post to trainer to ask him about this. I'm kind of losing hope here

Last session was the C4 (12-15) - for 12 minutes. I was kind of tired/fuzzy after, slept for several hours in the afternoon and basically hung out in bed for a good part of the day. I don't think I needed sleep (it was Saturday and I had slept in) so... probably not a great effect. He wants me to do 15 minutes at C4 with a slight decrease, but I think I'm going to double check... at this point, I think 15 minutes of anything is probably too much.

It would be so much easier if I didn't have to deal with work while also trying to get this all sorted out.
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Old 02-18-2019, 10:53 AM #36
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I thought this article was pretty good. I think neurofeedback has a lot of potential but the lack of double-blind, placebo/control group studies and empirical evidence concerns me. I do not doubt that it works for some people and if or how it works doesnt matter if clients feel it is beneficial but the cost factor and the fact that many of the patients that this is promoted to are economically disadvantaged I think should be scrutinized.

Read this before paying $100s for neurofeedback therapy | Psychology Today

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A new paper in American Psychologist, by Robert Thibault and Amir Raz at McGill University, states that "placebo factors permeate EEG-nf [EEG-based neurofeedback] and likely account for the majority of relevant experimental findings and clinical outcomes". In other words, most of the benefits seem to be a placebo effect based around the experience of attending a clinic and receiving attention from a caring practitioner, rather than having anything to do with learning to control your own brain waves. "EEG-nf entails a degree of deception," the authors conclude, "—the putative mechanisms differ from the actual underlying mechanisms. Moreover, cheaper and less time-intensive options may be available." Thibault and Raz urge the research community to spend more time researching the nature of the placebo effects involved in neurofeedback therapy to better understand how it works and how its benefits might be exploited more cheaply and easily to the advantage of patients. They also draw attention to the massive conflict of interest in the research field: in a literature review, they found that "the first author on 37 of the 39 publications included (i.e., 95%) either runs a private EEG-nf practice or sells neurofeedback equipment."
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In Lancet Psychiatry, a new triple-blind, randomised controlled trial of neurofeedback therapy for adult ADHD compared with sham neurofeedback (client thinks they're getting neurofeedback but they're not) or CBT-style therapy. All three groups showed improvements in symptoms. The neurofeedback group showed no greater improvements than the other groups. The authors, led by Dr Michael Schönenberg, provide this useful summary of the implications of all the available evidence concerning neurofeedback therapy for ADHD to date: "This study adds to first evidence from other studies that investigated the effects of neurofeedback in children with ADHD or other clinical disorders and observed no advantage for neurofeedback when compared with sham treatments. Our results suggest that although neurofeedback training is effective in reducing ADHD symptoms it neither outperforms sham neurofeedback nor group psychotherapy. As such, neurofeedback cannot be recommended as an efficient approach in the treatment of adults with ADHD."
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I don’t doubt that most neurofeedfback therapy clinicians are well-meaning and well-trained. But looking at the literature, it seems there’s good reason to be skeptical about using their techniques, especially as a short-cut to elation and enlightenment.

Most of all, I find it worrying how they present their services to the public. They make grandiose claims, like the brain changes being permanent. They big up their technical wizardry (“Our chairs are based on NASA designs” boasts the Brainworks website). And what's more, they continue to dally with New Age mysticism (Brainworks offers spiritual retreats and says their approach brings “spiritual neuroscience firmly into the 21st Century”). Just as in the flower-power days of neurofeedback, they still can’t make up their minds whether to clothe themselves in the white coats of science, or to dress up in the loose robes of woo.
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Old 02-22-2019, 01:23 AM #37
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Default Re: Neurofeedback Therapy

hi guillo
apologies for taking a while to get back here. i saw your other thread about your last therapy session.

how have you been doing since? are you still working on your NFB in the meantime?

those sessions where you felt good, but nauseous, how long did the nausea last for? i experienced the nausea and sometimes extreme sleepiness afterwards, but it usually went away about 30 mins or so after stopping the session. i usually was able to tolerate the nausea and didn't let it deter me from continuing with a protocol or frequency setting if the overall results were positive.

i definilty preferred being able to do my sessions at home mostly because i felt more comfortable in my home and it provided me with the flexibility to do my sessions when i wanted and when it was most convenient for me. plus, like you said, i could just crawl into bed or relax on the sofa afterwards.

hope you are doing ok. sending hugs your way
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Old 02-22-2019, 02:13 AM #38
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I think neurofeedback has a lot of potential but the lack of double-blind, placebo/control group studies and empirical evidence concerns me.
well, if it turns out that all the NFB i did was nothing more than an overpriced expensive placebo, then it was f'n worth it in my book it managed to work in ways where my talk therapy never ever could. just like everything, it may not work the same for everyone, but i definilty don't discredit how significant it was to my own healing.

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I do not doubt that it works for some people and if or how it works doesnt matter if clients feel it is beneficial but the cost factor and the fact that many of the patients that this is promoted to are economically disadvantaged I think should be scrutinized.


i too find i frustrating too that NFB is not widely available, and if it is available, it's quite expensive to do. although, for me, i live in a country where most therapy is considered a 'luxury' because there is no insurance cover for therapy and private therapy is paid fully out of pocket. so when it came to doing NFB, it was not that big of a deal to expect to pay similar prices per session as i was for my talk T. but in my case, i had the opportunity to purchase my own equipment from my practitioner to use at home and it made financial sense to do that instead of paying for his time in his office on top of all the travel costs (he was 90mins drive away) for a minimum of twice a week sessions. i have heard in the States that some insurance providers are starting to cover some of the cost for NFB, and i think that is a good start, but the difficult part is finding a trained practitioner and one willing to work with insurance.
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Old 02-23-2019, 04:32 PM #39
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Default Re: Neurofeedback Therapy

Hi Koru_Kiwi,

Thanks for the hugs. I think I'm doing OK (re: old therapist). In the moment, it was pretty horrifying - it's the only time I've ever left in the middle of a session! But, we clearly weren't on the same page, so even though it's sad, I'm coping. I think it helps to realize that I was probably *never* going to feel safe enough to open with up with her, so she sort of did me a favor. But *yikes* - I definitely wasn't expecting that going in!

I'm still working on the NF. We're still struggling to figure out what will actually work for me. That's frustrating. I just did a session last night... and ugh. Headache, a little nausea, and lots of trouble sleeping. Still feeling a bit wonky today - I had to get up for an appointment, but ended up back in bed for a few hours after that.

My sleep has been terrible this last week, and I'm starting to get really... distracted/forgetful? Like... I started driving out of the grocery store with my parking brake on... I drove through the entire parking lot, a block down the road to a red light, SAW the light on the dashboard that says "brake" (and thought it was telling me that I had my foot on the brake! Argh!), then drove a little bit further before I realized! I'm usually a little distracted, but it's been happening a lot more than normal, and bigger things (like the car, missing part of a work meeting b/c I forgot to check my calendar, left a meatball - just one! - out overnight after cooking!) - so that's frustrating too.

re: The nausea... I'm not entirely sure at this point (re: how long it lasts) - but definitely longer than 30 minutes! Everything's starting to blur together. I did go back and try the original protocol one time (but only for ~12 minutes) and still had problems, no magic there!

Thanks for pointing that out though. My provider said something similar - he's not too worried about me feeling bad right after, but more interested in how I feel the next day, and in particular how I sleep. He said sometimes, right after, you might not feel good because you're brain is tired from having to exert itself, but it's more important to look at the effects on your sleep and how you feel later on...

One interesting thing - in my last call with him, he said that I'm reacting more strongly than he would expect, but also my reactions don't really match what he'd expect to see for the sites we're working on. So, for now, he's assuming my brain is "a little bit different" - but if that continues, he's going to throw that theory out, and assume my brain is "totally different" from everyone else - and give me a bunch of other protocols to start trying, so we can pin down what works.

I'm not sure what to think about that. Honestly, I'm starting to wonder/worry if it has to do with trauma in my past - if my brain is wound up really tightly, because it's busy repressing stuff so I can function and trying to just hold everything in balance and keep me from falling apart. That might explain why any kind of poking seems to feel bad?

Do you remember how long it took before you and your trainer figured out what would work for you, when you were first getting started? (Apologies if I asked this before)? I'm now in week 4... I'm sticking with it, because I don't feel like I've got any good alternatives (my life otherwise kind of sucks, and therapy hasn't helped at all!) - but I really wish my brain made more sense!

Thanks!
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Old 02-25-2019, 02:46 AM #40
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I think I'm doing OK (re: old therapist). In the moment, it was pretty horrifying - it's the only time I've ever left in the middle of a session! But, we clearly weren't on the same page, so even though it's sad, I'm coping. I think it helps to realize that I was probably *never* going to feel safe enough to open with up with her, so she sort of did me a favor. But *yikes* - I definitely wasn't expecting that going in!
i'm glad you had the courage to do what felt right for you in the moment. i almost walked out on my ex-T one time when he was becoming quite defensive and was completely on another planet and clearly mis-attuned to what i was trying to get across to him. i felt so frustrated, misunderstood and angry in that moment, but i was too scared to fully leave because i was too fearful of imagining my life without him in it. i was quite attached (unhealthily) and enmeshed with him during that period. but similar to what you said, i never could fully trust my T either, partially because of his own insecurities that he brought into our relationship, often mentioning how he felt like he 'had to walk on eggshells', so not to upset me or the 'delicate' balance of our relationship. as much as i tried to make it work and come to trust him, things like this and also his inconsistencies got in the way all too often to where i couldn't feel safe enough in myself to fully let him in.

sorry to hear that your sleep has not been good. improvements in my sleep was the first positive improvement for me and it started happening within the first two weeks of starting NFB. prior to the NFB, my sleep was quite broken and i maybe got a total of 4 hours of sleep a night. i always woke in the early AM (3am was the musing hour for me) and my mind would race and race for an hour or two. plus i was so hyper-vigilant, any slight noise, movement, or light would startle me awake with panic and a racing heart.

hopefully, if you can get your sleep sorted, it should help to improve other aspects of your life.

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One interesting thing - in my last call with him, he said that I'm reacting more strongly than he would expect, but also my reactions don't really match what he'd expect to see for the sites we're working on. So, for now, he's assuming my brain is "a little bit different" - but if that continues, he's going to throw that theory out, and assume my brain is "totally different" from everyone else - and give me a bunch of other protocols to start trying, so we can pin down what works.

I'm not sure what to think about that. Honestly, I'm starting to wonder/worry if it has to do with trauma in my past -
just wondering, and i'm hoping that your practitioner would have asked you this prior to starting your NFB, but have you ever had any physical head injury, maybe a severe knock to your head or did you suffer any physical abuse as a child where you may have been hit on the head? i recall Sebern discussing that people who have physical/traumatic brain injuries do not respond well or can have odd reactions to NFB in those regions where the injury occurred.

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Do you remember how long it took before you and your trainer figured out what would work for you, when you were first getting started?
as i said above, i started seeing positive results in the first two weeks of starting and i was doing 3 sessions a week in the begining. we started with C4 to find a frequency that felt calming and good and did this for about 6 sessions. then we soon moved to T3-T4 and P4-T4 and would do a little training at both those sites for a session. of all the sites i did training at, i responded very well at either P4 alone and at P4-T4. i felt that these were my 'sweet spots' and probably did the most training overall at these sites.

i hope your practitioner can help you find something son that will begin to work well for you too. glad to hear you are not giving up hope yet.

hang in there
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