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Old 08-07-2018, 03:58 AM #11
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Default Re: Neurofeedback Therapy

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Originally Posted by guilloche View Post
Probably more than anyone wanted to know, but it really is kind of fascinating. I'm hoping it can help
wow! thanks for such a detailed description of the assessment she gave you. the assessment that i completed was not exactly the same, but similar. there was the eyes open and eyes closed section, i read a passage out of a book, and then there was part where i had to listen to a strange kind of 'static' noise in headphones. when my clinician explained the results of the assessment and the reasons for why they were that way based on my EEG data, i found it quite fascinating to hear, especially in regard to my truama symptoms.

your tiredness may have a slight effect on the results, but overall i do not think it will make much of a difference since the EEG is measuring and comparing different types (frequencies) of brain waves in various regions of your brain when you were doing the tasks she had you complete.

again, thanks for sharing and definitly post an update after you get your results.
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Old 08-09-2018, 07:10 PM #12
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Thanks for describing your experience too, Koru-Kiwi. I went back this afternoon to talk about the results.

I'm not sure exactly what happened, but I felt... really profoundly disappointed.

I felt kind of "unseen". There were things that she said that were absolutely 100% accurate, but also, things that didn't resonate or that I couldn't quite make sense of. And, I felt like it missed a lot.

She moved on to the "let me tell you about the packages we offer" part of the presentation, and I started to make confused faces, trying to figure out what/how to ask. She asked me what was going on, and I told her that I was confused... that it missed big things. I have a trauma history. I was once diagnosed with a dissociative disorder. I'm extremely difficult for therapists to deal with (this has been confirmed by more than one therapist).

I just thought that more of this would be reflected. She said the dissociation was a surprise, that there's usually something very specific she sees, and I have no sign of it in my brain. She talked a little about trauma and how it could relate, but I didn't feel like she pulled everything together.

And, maybe that's part of it? I think that she very much presented it like, "I see this. It means this. I see this other thing, and it means this other thing." She really didn't do any kind of integration of the results. I don't know if that's typical, but it would perhaps make more sense.

I was also disappointed in that we talked about me not having the best memory, and while we talked, I specifically asked if she was going to send a report (otherwise, I'd want to take notes). Yes, she sent it - but it's pretty bare bones. None of the recommendations she talked about are in there at all! Heck, she didn't even include information on the services that they provide. I would have liked to have been able to read through that and consider my options, away from the office, but that's not even an option.

Ugh. Just really disappointed. I'm glad that I got a discounted rate. I think it was interesting and worth what I paid, but I would have felt really awful if I'd paid the full fee!

The report is hard to make sense of. In one place, it says that alpha was high... but then it talks (a lot) about it being a little low - which she mentioned. She said that for most adults, it's 10Hz, but mine was at like... 9.5. In person, she said 9.8. And it's probably a range. But (and I wish I had thought to ask!) I'm wondering how serious a 0.5 Hz difference really is?

A lot of focus on sleep issues and a high beta that doesn't shut down when I close my mind, which is true. I'm usually still exhausted when I wake up (though I'm making some changes in my diet, exercise, routine, etc that I believe will help - it's helped before!).

But, she also mentioned trouble *falling* asleep. Sometimes that's a problem for me, but it's not a constant issue that really bugs me. I have trouble *going to sleep* (actually disengaging, turning off the light, and going to bed) - but once I do, I think I fall asleep pretty quickly (unless it's too early to sleep).

Interesting, there are some notes in the report that say some things "suggest the subconscious emotions (i.e. trauma, resentment, fear) may be impacting conscious decision making behind the scenes" - I think if she had talked about that, it would have resonated and made me feel like she was "getting it". But, she didn't mention that, even when I brought up having a trauma history!

She also talked about "hot temporals" (?) - and said there are two ways that can show up. The first, which is 100% accurate for me, is an inability to "tune out" noises. I have this, and it drives me nuts... in fact, during the test, I was noticing sounds from the other offices. While in the waiting room, I was hearing sounds from behind the wall that were odd, trying to figure out what they were. Her example was getting irritated when taking a test in school, because someone is tapping their pencil - and that was totally me - it was MADDENING b/c I couldn't focus on the questions at all. She said that my brain literally can't read/answer the questions, for example, without paying attention to the noise. (In fact, this has come up with my last two therapists... my last one actually put sound proofing in his ceiling, because I was so distracted/upset by hearing people talking on the other side of the wall.)

So. I don't know. I didn't leave feeling really understood, or feeling like she could actually help. She didn't really spend any time talking about treatment would look like, what kind of changes were possible, or what the risks were at all. The office is hard to get to, and it's expensive (you have to commit to the whole program of sessions, not just "come and pay and see how it works for you" - plus the program includes things like meeting with their health counselor and doing nutritional testing. I think that stuff *could* be good, but I don't really know much about the other people who work there and it just feels a bit... eh... to me.)

It also worries me that there was no discussion at all of how to proceed with treatment re: the trauma. I've been googling a bit, and have seen that some people have real problems when they try NFB with trauma or repressed memories. Stuff pops up and it can be very destabilizing. I've been very destabilized from therapy in the past... just from being pushed too hard, too fast to get in to the trauma. I would have liked her to have said something about that... maybe just to acknowledge it, or talk about what she does to keep it from happening.

I don't think I'm going to go forward with it. I think I'd still consider doing NFB with someone... but I'd want to find someone closer, who doesn't require a commitment to an entire package of sessions, and who maybe has experience with dealing with trauma stuff.

Phew! I know, that's a lot! Thanks... I really appreciate being able to "unload" it here. I've actually written to my therapist too (and she told me I could, if I needed support), but I think she's not going to write back, so I was feeling a little unheard there too (though I told her in my email that "I'm OK" - so maybe she won't think it's necessary.)

I'm also considering getting a system that does "entrainment" at home... she talked a little about this, you have to do it more often than NFB, but it basically just creates a frequency (with sounds, and maybe lights?) and your brain naturally matches it. I need to look in to it more, but it might be a cheaper, easier way to get some of the benefits. Maybe?

Thanks!!!
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Old 08-13-2018, 03:39 AM #13
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Default Re: Neurofeedback Therapy

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Originally Posted by guilloche View Post
I'm not sure exactly what happened, but I felt... really profoundly disappointed.

I felt kind of "unseen". There were things that she said that were absolutely 100% accurate, but also, things that didn't resonate or that I couldn't quite make sense of. And, I felt like it missed a lot.

I don't think I'm going to go forward with it. I think I'd still consider doing NFB with someone... but I'd want to find someone closer, who doesn't require a commitment to an entire package of sessions, and who maybe has experience with dealing with trauma stuff.
thanks for sharing all of that. your experince sounds quite different to the one i had. sorry to hear that it was disappointing...i too felt a bit disappointed just reading your account of it and also would feel put off if the clinician was trying to push 'package deals' on to me. from what you have shared here, my gut tells me that this probably is not the right clinic to go to address truama and dissociation. i hope you do find another place that is closer to you that can help to address your truama symptoms. i beleive i already mentioned this in an earlier post, but i would recommend that if you do seek someone else out, ask if they are familiar with Sebern Fisher and her NFB protocols for developmental trauma/c-PTSD. i used many of her protocols to address my truama symptoms, including my dissociatiive disorder. She also offers training to therapist and clinicians who are interested in using NFB. you may be interested in reading her book as well, it is quite informative about developmental truama and how to address it with NFB: 'Neurofeedback In the Treatment of Developmental Truama' Neurofeedback in the Treatment of Developmental Trauma | Sebern Fisher

good luck!
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Old 08-13-2018, 08:46 PM #14
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Default Re: Neurofeedback Therapy

Thanks, Koru-Kiwi. And, thanks for the recommendation. I have the Sebern Fisher book... I got it recently after seeing a strong recommendation on reddit, but haven't had a chance to dive in yet. But, it's on my list to read. I'll keep looking to see who else I can find locally.

Thanks!
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Old 08-24-2018, 04:34 PM #15
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More disappointment, I just wanted to vent and wasn't sure if it was appropriate for the therapy forum.

There's a guy near me who does neurofeedback and has something like 20 years experience, trains people, and who trained my therapist. She recommended him, and says he absolutely knows his stuff and she trusts him. He also has training as a therapist, I think, so she feels like he'd "get" trauma and not risk making things worse for me.

On his website, there are 3 people listed at his office... him, his daughter (who appears to be in training to be a counselor) and another counselor who is certified in Neurofeedback and also has about 20 years of experience.

So, I finally sent them an email, asking if this guy is still doing neurofeedback, and how to schedule a "meet and greet" (per their website).

And, nope. He "consults" on difficult cases, but his daughter is doing all the training.

Ugh. Maybe I'm being unfair, but I've seen lots (LOTS) of therapists. My last T was very, very clear that when I was looking for a new one, I need someone with a lot of experience, because I tend to be a bit difficult (not on purpose, not anything dramatic - just a difficult case). New T agrees. I don't expect the neurofeedback person to be also doing counseling, but in reality, things might come up. And, there's no way that someone who's working at her dad's office and isn't even licensed yet (!) is going to be a good fit for me.

I know, I probably sound like a jerk. But, seriously... I've been trying to get help for the last 20 years. I've had a lot of experienced, qualified therapists... and none of them really worked for me. Lots of them inadvertently made things worse, or ended up kicking me out. It's been such a mess.

It's so frustrating to see something that looks like it could help - and feel like it's *just* out of reach. It's already expensive and time-consuming, why is it also so hard to find somebody competent to actually do the training?

I'm disappointed all over again!!! And, really... part of me just wants to buy a system and do it myself.

Thanks for listening... sorry for the venting! Happy Weekend everyone!
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Old 01-18-2019, 09:10 PM #16
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Just an update, for anyone still curious.

I've found somebody who seems very experienced and who offers remote training. My equipment should come next week, and I did a QEEG (assessment) locally, and had the data sent to him for analysis.

I just met with him tonight (phone) to talk about the QEEG results... and I'm a little down. I feel like such a mess... but my QEEG was overall very very normal, apparently.

It's really confusing. There were a couple tiny things that he pointed out, but overall, things look good. Which makes no sense, becauseI'm really struggling with so much in life (I have an entire sheet of notes of things that I thought neurofeedback might help with).

I recorded the call, so I'll go back and listen again later to make sure I'm not mishearing things or overreacting. The one thing that really jumped out was that he thinks my sleep isn't great, and that it's causing problems for me during the day (fogginess, slowness, tiredness, inability to get through much) - he said it looks like I'm pushing through it, but that once that clears up, a lot of other issues may be better too.

Mostly, I'm feeling kind of sad and confused. My life feels like such a mess and I feel so "not normal" (beyond being tired/lack of sleep). But I often feel like I do OK at looking better off than I feel (like most people wouldn't guess that I'm in therapy), and this kind of feels like it plays into that.

Anyway, I wanted to share, and wasn't sure where on the forums was most appropriate. I don't know if anyone is going to see this here, but at least I got to articulate it.

thanks.
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Old 01-20-2019, 09:30 PM #17
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thanks for the update.

just curious, which set up have you ordered?

that is interesting that this practitioner says that your qEEG is apparently 'normal' have you refereed to Seburn's book to the appendix where she has the list of symptoms and actually completed that client assessment? this may help to guide you to what areas are over or under aroused and where you should be focusing on with the protocols (if you and this practitioner decide to focus on any of those protocols that are in her book). this is what i like about Seburn's method, she tends to follow the presenting symptoms that the client is exhibiting to dictate the direction of the treatment.
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Old 01-24-2019, 04:11 PM #18
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Hi Koru Kiwi,

I was just stopping by to post an update, because I did my first training session today (and have no one in "real life" to talk to about it).

re: The set - I've got a U-Wiz (so it's only 2-channel, no HEG) amplifier and bioexplorer. I also have the "Innertube" game (rocket ship navigating through tunnels), as they recommended that, although I believe I can do audio-only training (and maybe some other games?) with Bioexplorer. I didn't order BX Shadow (which lets you train by watching movies) because, all in all, getting everything (plus supervision, QEEG, etc) was pretty expensive and I didn't think I needed that one too (though I may have a trial version installed, I'm not sure).

Apparently, they set most people up with the same protocol to start, about 20 minutes of C4-A1. It's supposed to be really gentle, and they only do 20 minutes so that you can see how sensitive you are. The trainer that did my introduction told me that they usually move people up to 30 minutes. For now, she said not to do more than every other day, but again depending on how I react, I may be able to do daily (if I want to).

I was SO INCREDIBLY stressed/anxious about getting it all set up. So, having it work was exciting and cool, but also a huge relief.

Not sure yet how I feel (this was all this afternoon). 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.

Anyway, I'm mostly excited and hopeful at this point! I listed my goals (for now) on my training sheet as sleep/energy (I tend to be tired all the time, I wake up tired, and often feel like I'm losing consciousness in the middle of the afternoon), then anxiety and depression. It seems like a good place to start.

The provider did tell me that he'll tend to believe me (re: symptoms) rather than the QEEG, and that I should think about what I want to work on, because there's a lot that you can affect with the neurofeedback.

The whole thing is very, very cool.

What kind of equipment do you have? And, what types of games/feedback are you using? I did "Innertube" today, and it was mostly what I expected (rocket stuttering, moving forward, stopping) - but every once in a while something odd would happen. Like, once my rocket totally missed the little mark it's supposed to hit, and had to spin around to tap it, then get back on the path. A couple times I seemed to run in to the walls, but not enough to seem like it was a normal action. Not sure if it's just noise, or how it's deciding what to do.

Thanks!
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Old 01-24-2019, 08:32 PM #19
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Ooh, and Koru_Kiwi (or anyone else who wants to chime in) - I had two other thoughts about neurofeedback, and I'm curious what others think.

1. The whole concept of neurofeedback, and the fact that it's been to show to work (at least some times, for some people) - means are brains think they can control the world.

What I mean is, if I didn't know that this worked, I wouldn't expect it to. Our brainwaves are invisible, they're not something that we consciously make (unlike, say an expression, like a "smile"), and afaik there is nothing in the world that actually reacts to our brainwaves (other than neurofeedback). There is no biological/evolutionary reason why our brains would be able to connect the feedback we're seeing with the brainwaves we're making, and change their functioning to get better feedback. It's sort of crazy, when you think about it, isn't it?!?!

Or am I missing something? Because to me, it looks like our brains, somehow, are set up to *think* they can control things in our environment. It boggles my mind a little!

2. I'm a highly anxious, very high strung person. If this works, I'm hoping I'll be a little more relaxed, chilled out, and "go with the flow". Not so chronically stressed by every little thing... We know that stress has all kinds of negative health effects. So, if this does what I hope it does, it could literally be "life saving" not just in terms of emotions, but in terms of physical health too. That's so cool to me!

Just random stuff I'm pondering tonight. I'm actually a little tiny bit fuzzy... like my head feels weird, it's not a full-blown headache, but it's not really all focused and together either. Not sure if it's the training, or something else. And my neck is still killing me. But, it's really nice to feel hopeful!

Take care!
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Old 01-25-2019, 06:56 AM #20
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I am just curious.. is there science to back up whether neurofeedback is an accepted and effective form of treatment? I ask because my understanding is that it has been shown to have potential but I thought they didnt study its effects and success enough to endorse or approve it? I may be wrong which is why I am asking.
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