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Default Jan 25, 2019 at 11:33 AM
  #21
Edit: This was in response to sarahsweets question about evidence!

I think so, personally. But I didn't keep an index of everything that I read when I was researching it.

- Not "research", but if you read the Seburn Fisher book (Neurofeedback in the Treatment of Developmental Trauma: Calming the Fear-Driven Brain: 9780393707861: Medicine & Health Science Books @ Amazon.com) - she talks about her experiences treating people with development trauma.

She's been doing this for awhile now (I'm guessing at least 20 years?) and has worked not just in private practice, but with badly traumatized kids in group homes/treatment centers. She talks about how neurofeedback is able to basically help people rewire their brain, whereas in her years of doing just therapy, she hasn't seen that happen.

So for complex trauma, she talks about how with a lot of therapy, you might get to a point where you can recognize your triggers and know how to cope when triggered. You won't act as "reactively" - but you still react. You still get scared, and have to use coping tools. With neurofeedback (over enough time, it can take a year or more, I think, for complex stuff) - she says that she sees people actually "cured" in the sense that they don't react. The triggers disappear. That's really mind-blowing to me!

- There's apparently a ton of research re: neurofeedback and ADD. The guy that I'm working with casually mentioned that ADD is one of the few things that the FDA (I think?) has approved neurofeedback to diagnose, because there are clear indicators in the QEEG that reliably show ADD. These do a *better* job than trying to assess someone's behavior (from a talk that I hear from someone else). I believe neurofeedback can be used to treat ADD too, but I didn't read as much about that, since that wasn't the issue that I was interested in.

- Another person that I've read has talked about how there are complaints that there aren't enough "double blind" studies of neurofeedback. The problem is, it's really hard to do that right now. Double blind means that both the doctor and the patient do NOT know if they're receiving the actual treatment or a placebo (so the doctor is given pills to give to the patient, but doesn't know if they are the real pills or sugar pills. This way, the doctor can't unconsciously give any subtle cues that might let the patient know what they're getting and influence their reactions).

That's really hard to do with neurofeedback, apparently. It's hard to have someone know that they're giving "fake" neurofeedback.

BUT - the point that this guy was making was that there are other studies of neurofeedback where practitioner is able to make symptoms disappear, bring them back, then remove them again. Which shows that the NF *IS* doing what it's supposed to.

- The last bit that I remember clearly, and found fascinating, is that NF was really developed in the 60s. The guy who worked on this was working with cats - trying to see whether he could train them to produce a particular frequency of brainwaves (and he did). Then, he got a contract with NASA to work on a solution for astronauts who were having seizures from the rocket fuel fumes.

He started his NASA work by taking a bunch of his cats, and exposing them to rocket fuel, to see at what levels seizures developed. Some of the cats didn't get seizures though... no matter how much rocket fuel he exposed them to. You can imagine his confusion, until he figured out - the cats that weren't having seizures were the same ones that he had trained to produce that particular brainwave.

So not only did they make more of the brainwave, they continued to do so after training was completed, and it had a clear protective effect from rocket-fuel-induced seizures. (In a way, this was double blind - the cats clearly didn't know what was going on, and he had forgotten about the previous study, so wasn't trying to test its effects).

That's all great, but even better - he had an assistant who suffered from bad seizures. She was unable to drive, took strong medications, and was scheduled for brain surgery to try to fix the problem (which didn't have a super high chance of success).

After seeing the cats, she asked him to let her try the neurofeedback. So he set her up, and she did it... and... the seizures stopped. She didn't go through with the surgery, she was able to stop the medication, and she was able to drive again.

So... that's really anecdotal, not at all a scientific study. But, it's powerful.

I believe there's more actual "research" out there, but I haven't dug in or organized it. I basically read enough to decide it worth trying. I have a long history of terrible therapy experiences (therapy has usually made me much worse, and has *never* really been helpful/good for me). I'm pretty miserable, and feel like I've wasted most of my life (I'm in my mid-40s) dealing with this stuff. Neurofeedback seems to have very few "risks" associated with it - it's based on teaching your brain to operate a little differently. It doesn't "stick" with just one session, so if you do have a bad reaction to a particular protocol, you just try something else next time.

The downsides are that it can be time-consuming and expensive.

I find it insane that, given the low risks and possibility of "curing" something (versus just treating symptoms with medication) that it's not more well known and used. I think that there are probably politics involved (for example, it wouldn't surprise me if drug companies were against it, because people often are able to stop taking medication when they do neurofeedback) - which just sucks. From an insurance perspective, it's also probably more "difficult" to administer (if you see someone in person, you have to go at least 2x/week, and you might need 40-60+ sessions) versus giving you a pill and sending you home.

So, that's my (long-winded) take on it. Hope that's helpful! If you're interested, you should definitely poke around more online and see what you can find.
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Default Jan 28, 2019 at 04:07 AM
  #22
thanks for the update! i enjoyed reading it glad you got your system all set up and have had opportunities to use it.

i also have a two channel unit and have been able to do everything i have needed with it. it's the Thought Technologies ProCompII and i use their BioGraph Infinity software with it. it has some simple games, like making objects move, and also a lot of fractal or image changing games that have accompanying music/sounds with it. i prefer the changing fractals games the most, they are quite relaxing for me and feel less frustrating.

i too started with placement at C4-A1. it seems to be a good starting point and a good place to return to if you ever feel a new protocol is not working well for you. if i recall right, for me, working at C4 seemed to help ease my sleep issues (waking in the middle of the night often with a racing mind and getting maybe 4 hours total of sleep). it was amazing as my sleep started to improve because it helped to ease some of my depression as my 'spirits' began lifting.

in regards to the ear clips (which do start to feel a bit uncomfortable after a while), i started using a small 1/4 cut piece of round cotton pad (the disposable ones for removing nail polish or makeup) and place that between the ear and the the side of the clip without the metal contact. for me, the extra padding against my ear lobe seemed to help ease that pinching.

Quote:
Originally Posted by guilloche View Post
My neck was weirdly a little sore, and my earlobes hurt from the electrodes (I think I can fix this by moving them to the tops of my ears). But, after training, I laid down... and my body, everything below my neck, felt SO relaxed. It's not as noticeable standing up and moving around, but it was like that kind of relaxed you feeling you get after a massage. So that was nice.
are you still having issues with stiffness in your neck? IIRC, from Seberns book, this is a sign of over stimulation and you may be training at too high of a frequency and/or for too long.

after a NFB session, i often will feel incredibly relaxed and sometimes sleepy. like you said, it does feel similar to how you feel after a relaxing body message.

i don't require to use my equipment as frequently anymore. i have done some brief 'top up' sessions a few times when i felt like was in a 'funk', but the last time i did that was probably over 6 months ago. anymore, i tend to use it for alpha/theta training, which i do lying down, eyes closed for about 45 min to an hour. it helps to get me into a meditative state (it's a state where you are kind of cat napping and semi-dreaming/thinking at the same time, just before falling into a full sleep). i really enjoy being in this state because i have had good success at using it to help me process any daily stresses that may be preoccupying my mind and it has helped me further process some of my trauma memories and the accompanying emotions. after an alpha/theta session, my husband will sit with me (usually cuddling or holding me) and he encourages me to discuss things that may have come up for me in the session. i have found that being able to discuss things that may have come up during the session and having that safe physical holding to be incredibly beneficial for fully processing or perhaps integrating some of the memories and emotions.

i'm very excited to hear some more about your progress in the future. also, don't hesitate to send a PM if you ever have a question or need some feedback. that way i may see your message sooner and be able to respond quicker
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Default Jan 28, 2019 at 04:34 AM
  #23
Quote:
Originally Posted by guilloche View Post

I find it insane that, given the low risks and possibility of "curing" something (versus just treating symptoms with medication) that it's not more well known and used. I think that there are probably politics involved (for example, it wouldn't surprise me if drug companies were against it, because people often are able to stop taking medication when they do neurofeedback) - which just sucks. From an insurance perspective, it's also probably more "difficult" to administer (if you see someone in person, you have to go at least 2x/week, and you might need 40-60+ sessions) versus giving you a pill and sending you home.
i agree...i find it frustrating that NFB isn't more accessible and affordable for people to do. honestly, i don't think i would have tried it, or even thought of it, if it was for trauma expert Bessel van Der Kolk discussing it (and specifically talking about Sebern Fisher) in his book, 'The Body Keep the Score'. i believe it is starting to get a little more attention than it use to, and fortunately, some insurance companies in the states are starting to see the benefits of covering it, but it is still slow to get the same attention that other modalities, like EMDR and DBT, have received over the years in helping with trauma. that is probably due to the fact that most of the research into NFB has been for ADD/ADHD over the years and the research in regards to the benefits for truama is definilty lacking in comparison. plus, i also wonder if the concept of 'hooking' ones brain up to a computer to play a game feels a bit off putting, strange, or too impersonal to some people as a form of therapy. for me, to help overcome this, i thought of it more as a form of physical therapy that my brain needed to help heal the damage my early childhood truama had caused.
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Default Jan 29, 2019 at 09:44 PM
  #24
Koru_Kiwi - thanks for telling me about your experiences too. It's really helpful to hear, and to have a point of comparison, since there aren't many people who are familiar enough with it to talk with.

So, I chatted with the guy helping me about how I had gotten a little nauseas from the training. He talked about using a different set up for the reward - instead of the rocket game, it's all audio. It just plays different tones (not actually music) as rewards. You can read a book while doing it (or watch the Bioexplorer screen, I assume, since I did this a little).

He also suggested the same thing you did, trying to lower the reward.

So I did this last night, used the tones with a reward that was lowered just 0.5Hz (11.5 - 14.5).

Oh wow - it was terrible! I'm sure it was the lowered reward, but it was soooo awful. Not while I was doing it (I don't understand why I don't feel the effects while doing it), but a few minutes after, I was washing the electrodes, I breathed out and felt like I was going to fall down. It literally felt like I had been drugged, and might lose consciousness... just so so so so slowed down. I tried listening to some fast music to help counteract it (it was the only thing I could think of, I probably should have got back online and tried to reach the guy to see if he could recommend something, but I felt really awful and it was kind of late). Slept poorly, then still felt pretty off this morning. I didn't feel like I had my brain back until after lunch (and chocolate).

Yikes. It was crazy. So the next time I train, I'm going to go back to the higher reward (12-15) and try the tones again, to see if that helps. I really do wish I could find a way to keep using the rocket game though, as it's pretty fun/engaging to me.

I can see why the fractals would be fun, and less frustrating! I think the concept of a "game" is kind of hard, because there's nothing you can consciously do to perform better - which I find frustrating too. With the rocket, I try to hold on to the idea that I don't have to do anything, but just watch it, like watching a movie.

Thanks for the tip about the cotton rounds! My ear clips seem to have electrodes on both sides (I add gel to both sides), so I'll have to ask him if it's OK to put something on one side.

Oh! And my "chat" was all online. My first check in phone call will be Friday! I'm looking forward to that, I think it will be helpful. I'm not very good about reaching out for help, so I've been a little shy about asking questions in the chat channel that I have.

Anyway, I'm looking forward to that.

When you did C4-A1, do you happen to remember how long you trained for at a time? They've got me starting with ~20 minutes, but said that they'd eventually bump it up to 30 (after they see how I react).

Your alpha-theta training sounds so much better than anything I've heard about it! But, you're really lucky to have that support from your husband! I'm on my own, so no one to help out here, but that sounds like such a nice way to do it! I think it will be awhile before I can get to the point of even thinking about AT training though... my brain definitely does not feel very stable or well-regulated at the moment!

I'm beat... need to try to get to bed early tonight since I didn't sleep well last night.

Thanks again! And, thank you for the offer to message you, I'll keep in touch.
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Default Jan 30, 2019 at 03:21 AM
  #25
apologies, i only have a moment for a quick response:

Quote:
Originally Posted by guilloche View Post

When you did C4-A1, do you happen to remember how long you trained for at a time? They've got me starting with ~20 minutes, but said that they'd eventually bump it up to 30 (after they see how I react).
this is what i did too...started doing it for 20 mins and then eventually increased the time to 30 mins.

Quote:
Originally Posted by guilloche View Post
Your alpha-theta training sounds so much better than anything I've heard about it! But, you're really lucky to have that support from your husband! I'm on my own, so no one to help out here, but that sounds like such a nice way to do it! I think it will be awhile before I can get to the point of even thinking about AT training though... my brain definitely does not feel very stable or well-regulated at the moment!
agreed, i didn't first start doing A/T training until i had addressed many of my truama symptoms and knew that i was more stable and regulated. it was about after four months after starting NFB that i started doing A/T training. perhaps journaling after doing A/T training could be helpful for processing too. also, not sure if you are still seeing a talk T, but at that time when i first started doing NFB, i was still seeing my talk T and i would also discuss some of the things that had come up from doing A/T training in my therapy sessions, especially if i still needed some help in processing them.
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Default Jan 30, 2019 at 10:08 PM
  #26
Thanks for the response!

That's really reassuring to hear that you didn't jump into AT training until you were a bit more stable, but wow... you were able to do that after 4 months? That's pretty incredible!

I'm a little freaked out tonight. I let my guy know about the bad reaction, and asked if it was OK to just go back to 12-15 @C4 (since between the two, that was better - I actually had some positive effects, just felt nauseas).

He wants me to try the lower frequency at CZ. I told him I was nervous, given how awful my reaction was, but he said that CZ runs a bit slower than C4 and is "gentler" so it's worth a try.

And now I'm full of anxiety. And it's late here, so I'm not going to do it tonight... will try tomorrow after work, I guess.

Oh, and he said he was surprised by how bad my reaction was to the lowered reward, that that's not normal (he wasn't sure if it was actually from the NF, but I explained how bad it felt right after). I feel like I'm always an outlier/weirdo!

I'm not sure that my talk T is going to be much help. I saw her today, and she was excited to hear about the NF (my first session since starting) - but the conversation was really hard, and I'm not sure why. Like, she's not doing a good job of reading me or helping with regulation, so I got overly revved up, and left with a headache. I think I was louder/faster too... I left feeling like the conversation was more of a tug-of-war!

Anyway, no need to rush to respond, I don't want to bug you! But I appreciate having someone to share this with... and please keep your fingers crossed for me with the CZ training. My anxiety is now through the roof with it !
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Default Feb 01, 2019 at 07:32 PM
  #27
Koru_Kiwi, no rush to respond. (Since I'm posting again, I didn't want it to look like things are "piling up" and you need to respond - I just enjoy being able to share this stuff, and having a place to sort of share and process it.)

I tired CZ last night (rewarding 11.5 - 14.5). It was definitely "less bad" - but I still didn't really feel *good* when it was done. This is the first time that I noticed having a reaction while actually doing the training though - and I didn't like it. About 3/4 of the way through, I felt... tired, like I wanted to close my eyes or put my head down. My head felt heavy and not right, and weirdly, I briefly had a weird tickle under the electrode on top of my head (!).

It was also the first time that the training felt like it just dragged on for too long (it was only 21 minutes, the same as the first 2 trainings). The first 2 went by super fast - I was surprised when they ended, but this one... I really wanted to quit by around minute 17 or so! And the last minute... I was just so ready to be done... I actually had to talk myself through it ("Just one more minute, hang in there, you can unplug soon!")

I got to do a phone call check in with my trainer tonight. It was very brief, but helpful to actually *talk* rather than chat online. He said he was surprised, and thinks that I'm just *super* sensitive to this stuff, because apparently most people don't notice any changes until they're a couple sessions in.

So, he's given me 3 new, shorter protocols to try. He said to just try them and see if I notice anything. He thinks that until we figure out what works for me, shorter will be better, which I agree with. And he hopes one of them will click with me and make me feel really noticeably *good*, and that will give him info on how to train me and where to go next.

So, I'm actually kind of excited to try my next couple protocols. A little nervous too, but excited to see how they go.

It's weird, b/c part of me worries that it's something psychological getting in the way (i.e. making me feel sick after the training). But I don't think so - I didn't expect that at all (and actually enjoyed the first two, other than feeling sick after). With that 3rd one, that went so terribly, I was *expecting* to feel awesome. I thought for sure that would be it - that I'd be blissful and relaxed and feel great!

So, fingers crossed. Right now, it's been a really stressful week and I've ended up eating way too much sugar to cope, and am practically *shaking* with sugar now, which isn't going to help my training, sleep, or ability to be not anxious. So I'm going to rest up tonight, trying to get myself organized for the weekend, and probably try the next one tomorrow...

Like I said, absolutely no worries/pressure to respond. I just feel better being able to sort of process it here. And, maybe one day it will end up useful to someone else.

Thanks!
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Default Feb 04, 2019 at 01:02 PM
  #28
Just checking in. I wish that I had more people in real life to discuss this stuff with... there's really just my therapist, but I hate to spend the money for a session to just blab about neurofeedback.

I've tried the first two test protocols that my trainer provided (for 15 minutes each, since he thinks my strong reactions may be due to overtraining).

First was A3-A1. For most people, this is supposed to add energy and alertness, and help with deep sleep. Sounds fantastic, but didn't work for me. I felt a bit depressed (and still kind of sick after), and a little depressed the next day.

Second, yesterday, was C4-A2 - which he described as focusing. It didn't feel focusing to me, but wow! I was sooooooo relaxed after. Maybe too relaxed. I laid down in my bed and just sort of drifted in amazement, loving how soft the bed was, how cuddly the blanket was, and just feeling kind of good.

Since a previous protocol left me feeling really bad, I thought that I should try to say something, to make sure I was still able to construct sentences - I thought about it, then thought, "well, the sentences in my head all sound fine, I'm sure I *could* say something, if I wanted to, but speaking feels like too much work."

This felt good, but I don't know if it's really actually great, since I spend too much time in delta, apparently, being very non-productive. I also turned on Netflix while relaxing, and noticed that the camera shots - like changing from one focused on one character to another, felt really fast and jarring (it was a show that I've watched a lot of, and it's never bothered me before). That didn't last long, and it didn't really upset/bother me, just noticed it and thought it was weird.

Sadly, the good feelings didn't last too long... I got a call from my brother, who's an addict, that was pretty upsetting (he had OD'ed and had to be brought back with Narcan) - so that sort of killed all the good feelings and snapped my brain back to the present.

Also, ended up not sleeping well, but I think that I ate something from a salad bar for dinner that upset my stomach, so I'm not blaming the neurofeedback at all. But, it was a bummer, because I'm back to being super tired, unfocused, and feeling half asleep today. I think it's a good reminder, b/c it's easy to forget the feelings (for me), so it's nice to have a comparison of "this is how I used to feel ALL the time".

One more test protocol to go in the next couple of days, and another check in on Friday with my trainer. I think I may ask about going back to the first protocol (C4-A1) and trying that for just 15 minutes, since it had some good effects.

I'm so curious to see what he says, as this was supposed to help him understand better what my brain needs. I also wonder/worry a little - like how it is that I'm having such crazy strong reactions, if it's just the novelty (i.e. if I run the same protocol, will my brain react less?) , stuff like that.

But overall, still finding it really interesting.
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Default Feb 05, 2019 at 03:30 AM
  #29
glad to hear that your practitioner has given you some other protocols to try and that he has suggested doing them for less time. i participated in an intimate weekend NFB training seminar hosted by Sebern Fisher back in 2017 and i remember her specifically talking about how for some clients sometimes less is best. she mentioned that for some reason some clients may seem to only be able to tolerate a few minutes of a specific protocol and it still will be beneficial for them. i have cut down on the session times when i have started to experience some adverse symptoms while training, like my stomach getting upset or feeling very tired and when adjusting the frequency didn't seem to help. it's as if i was training at the correct frequency, but i didn't need to train for a long period of time at that frequency and still found it helpful.

have you been keeping a journal of the symptoms you are experiencing during and up for a few days after training? including the odd or anything random and out of the ordinary? i found doing this to be quite helpful for determining if a protocol or the frequency was working and beneficial.

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it's been a really stressful week and I've ended up eating way too much sugar to cope, and am practically *shaking* with sugar now
it's interesting that you say this about eating too much sugar...i recall Sebern mentioning in her book something about some clients having increased sugar cravings after NFB training. i will have to see if i can find exactly what she was referring to, but i do wonder if your training has resulted in this for you.
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Default Feb 05, 2019 at 11:21 PM
  #30
I'm super interested in this thread. Thank you for sharing your experiences. I've done a lot of research on the topic, but I find personal experiences much more real and helpful.

I've wanted to try neurofeedback therapy, but it's not covered by my insurance. I'm not sure if they'd make an exception for me or not since I'm very treatment resistant.
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Default Feb 06, 2019 at 10:34 PM
  #31
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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Default Feb 11, 2019 at 04:47 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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Default Feb 13, 2019 at 03:16 PM
  #33
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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Default Feb 15, 2019 at 03:40 PM
  #34
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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Default Feb 17, 2019 at 09:33 PM
  #35
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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Default Feb 18, 2019 at 11:53 AM
  #36
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

Quote:
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."
Quote:
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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Default Feb 22, 2019 at 02:23 AM
  #37
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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Default Feb 22, 2019 at 03:13 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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Default Feb 23, 2019 at 05:32 PM
  #39
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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Default Feb 25, 2019 at 03:46 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.

Quote:
Originally Posted by guilloche View Post
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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Originally Posted by guilloche View Post
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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