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Old 01-25-2019, 10:33 AM #21
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Default Re: Neurofeedback Therapy

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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Old 01-28-2019, 03:07 AM #22
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Default Re: Neurofeedback Therapy

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.

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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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Old 01-28-2019, 03:34 AM #23
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Default Re: Neurofeedback Therapy

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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Old 01-29-2019, 08:44 PM #24
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Default Re: Neurofeedback Therapy

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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Old 01-30-2019, 02:21 AM #25
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Default Re: Neurofeedback Therapy

apologies, i only have a moment for a quick response:

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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.

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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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Old 01-30-2019, 09:08 PM #26
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Default Re: Neurofeedback Therapy

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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Old 02-01-2019, 06:32 PM #27
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Default Re: Neurofeedback Therapy

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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Old 02-04-2019, 12:02 PM #28
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Default Re: Neurofeedback Therapy

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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Old 02-05-2019, 02:30 AM #29
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Default Re: Neurofeedback Therapy

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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Old 02-05-2019, 10:21 PM #30
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Default Re: Neurofeedback Therapy

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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