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Old 08-14-2012, 08:40 PM #1
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Default negative side effects of neurofeedback

I am seeking help for a relative who has severe side effects from neurofeedback treatments.... severe headaches, depression, difficulty concentrating, etc. We have seen many doctors, but to this point have been unable to retify the problems. We are hoping someone on this site has info that could lead us in the direction of getting back to "normal."
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Old 09-25-2012, 08:51 PM #2
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Default Negative Effects of Neurofeedback - My Experience

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Originally Posted by sck1221 View Post
I am seeking help for a relative who has severe side effects from neurofeedback treatments.... severe headaches, depression, difficulty concentrating, etc. We have seen many doctors, but to this point have been unable to retify the problems. We are hoping someone on this site has info that could lead us in the direction of getting back to "normal."

I've created an account to address this inquiry, specifically. I find myself in a similar boat. It's my guess that with the growing popularity of NF treatment, the more reports of negative side effects will begin to surface. And I'd like to preface my brief story by expressing my disappointment in how blatantly irresponsible it is to not only neglect to inform new patients to NF therapy about the risks of negative side effects, but to actually instill a false sense of confidence, and reassurance in a reluctant patient by telling them that, in fact, there are NO negative side effects whatsoever. To tell a potential patient that, because this process is non-invasive, there are simply no risks involved, only benefits, is complete nonsense and borderline criminal. Furthermore, to claim only great benefits to be the outcome of this kind of treatment actually defies logic. Simply, if Neurofeedback therapy can benefit you in any way, especially significantly, it can also work in the opposite direction, in my case, significantly.
My mom is an occupational therapist who works with developmentally disabled children. I have struggled with depression and anxiety for the better part of my 30 year existence. We had both, independently of one another, read a little about neurofeedback therapy and the wonders it can do to improve so many different conditions. Because the field my mom works in, and because she chooses to stay informed, she exposes herself to demonstrations of a range of potentially beneficial treatments that are available. She saw a demonstration done by a wonderful woman, of whom eventually became the counselor that oversaw my NF treatments. I cannot stress enough about how wonderful, and deeply involved this woman is with the affects of this process on her patients. Highly intelligent and very compassionate. So, backing up, my mom was curious to see how this treatment could benefit me, and eventually some of her own patients, so she offered to pay for 20 treatments if I were the guinea pig. Having read only good things about it, I agreed. Then, after meeting with the counselor, my confidence in the therapy was even further reinforced. I kept reading that there were "no negative side effects" on nearly every piece of literature I was given. This was important, because though I had struggled with depression and anxiety for the better part of my life, it was very manageable with medication. I was functioning, and doing rather well at the time. But the idea of being free from medication was tempting. This is why I made the decision to go through with the treatments.
After the first 5 treatments (eyes open), I had not yet experienced any significant difference. Maybe a slight improvement in overall sense of well-being and day to day mood stability. From 6 to 10 is when things started to go down hill. The way I described it was that it felt like somebody had set me on fire with electricity. I could feel energy coursing through me at all times. It felt like I could light up a light bulb with my bare hands. Scary. Then, the energy I felt, seemed to get a bit looser. It turned into an internal vibration, eventually turning into a visible and eerily rhythmic tremble. My teeth would chatter, sightly, all the time. They are as I type this. I informed my counselor about this, always keeping an open line of communication with her about how the treatments were affecting me, and she decided to change the protocol to an eyes closed. From this point on there was no improvement from where I had started, when I first worked through the doors to the clinic, only an attempt at getting back to normal. Or my normal, anyway. I spent the next 12 treatments, 22 in all, attempting to regain my normalcy. Some would ask me why I continued to do it that long after I started to have negative effects. Good question. The reason I stayed with it was that my logic told me that if neurofeedback was responsible for this, neurofeedback could also be my salvation. Also, I had read in several places during my research (after the negative effects began) that if a patient displays negative effects, these are the same patients with the highest success rate after enough treatments. I think giving it 12 more treatments was being generous on my part. In conclusion, I find myself pretty screwed up. Much, much worse off than I was before. Some of the things I'm experiencing are nightmarish. A list of my symptoms below:

-Constantly trembling, internally vibrating, teeth chattering (I would compare this to the feeling of being cold, as far as how the body responds in an attempt to stay warm. Very tight, seized up, chattering, trembling, at all times.)

-Terrified of crowds, extreme social anxiety

-Bizarre head pressure on the top of my head and center of my forehead (without pain)

-Headaches more often (though this could be due to allergies)

-A wobble in my voice, a trembly voice

-Extreme tension

-Debilitating trembling due to anxiety in any social situation

-Depression

The extent of the social anxiety, along with all other physical symptoms listed, I had never experienced before neurofeedback. At all.
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Old 10-27-2012, 09:18 PM #3
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Hi,

I know this was posted a few months ago but I thought I would respond. First, I am so sorry for what you are coping with. It is truly frightening.

I wish that I had something concrete to help you/guide you. I think your best bet is going to be connecting with others who have been where you are and have found things that help. I had been researching neurofeedback and I am reading stories like yours so there must be some people who have found healing for themselves too.

Secondly, your symptoms sound like those that occur when the body endures a chronic stress reaction. I think you may have to become your own expert on the nervous system and chronic overactivation of the (I think) sympathetic nervous system.

Keep the belief alive that you can find your way to things that will help you.
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Old 10-28-2012, 05:32 AM #4
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Hi,

I know this was posted a few months ago but I thought I would respond. First, I am so sorry for what you are coping with. It is truly frightening.

I wish that I had something concrete to help you/guide you. I think your best bet is going to be connecting with others who have been where you are and have found things that help. I had been researching neurofeedback and I am reading stories like yours so there must be some people who have found healing for themselves too.

Secondly, your symptoms sound like those that occur when the body endures a chronic stress reaction. I think you may have to become your own expert on the nervous system and chronic overactivation of the (I think) sympathetic nervous system.

Keep the belief alive that you can find your way to things that will help you.
Thank you for responding. Very smart of you to research the possible negetave effects of NF. I regret that I didn't do the same. It's very likely that I would have gone through with the treatments regardless, though. Did I mention that I also struggle with severe health anxiety? I think you're onto something, concerning the sympathetic nervous system. I looked into what kinds of things can cause SNS disorders, and yikes. Don't do that. Some really bleak possibilities there. I guess my fear now is not that NF is causing my issues, but that it only exacerbated a preexisting condition. Which, that's just crazy. Because these issues started showing themselves practically over night. Are you planning to try neurofeedback yourself? Thank you again for your kind words. I'm struggling right now, and just knowing you took the time to read all that I wrote is comforting in some way.
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Old 06-01-2015, 01:18 AM #5
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Originally Posted by DetectableVibration View Post
Thank you for responding. Very smart of you to research the possible negetave effects of NF. I regret that I didn't do the same. It's very likely that I would have gone through with the treatments regardless, though. Did I mention that I also struggle with severe health anxiety? I think you're onto something, concerning the sympathetic nervous system. I looked into what kinds of things can cause SNS disorders, and yikes. Don't do that. Some really bleak possibilities there. I guess my fear now is not that NF is causing my issues, but that it only exacerbated a preexisting condition. Which, that's just crazy. Because these issues started showing themselves practically over night. Are you planning to try neurofeedback yourself? Thank you again for your kind words. I'm struggling right now, and just knowing you took the time to read all that I wrote is comforting in some way.
This is an old post and thread, but I also read through it with interest and appreciated your relating your story.

I found it through finding it very odd that I couldn't Google up negatives and bad issues with neurofeedback. I was looking at Heart Math and the emWave & PTSD. Google brought up a few scattered posts which referenced neurofeedback & PTSD.

I'm sorry about what you have gone through, and I hope you are well.

...

It makes me sad that medical treatments and thoughts are often presented from one, homogenous perspective, and that this is accepted as some sort of norm. I tend to think about things that might make us reliant upon artificially induced states as definitely containing inherent risk, even if it is rare, or risk and negative effects (perhaps long-term, rather than acute ones) haven't been reported or seen yet.

I also worry about neurofeedback being based upon "correcting"/"optimizing" toward what's normative or common, which isn't at all necessarily optimal, but potentially rather 'bleh' or mediocre.

Others - a very few - have expressed this concern, too.

It's a similar concern as that of how health systems currently determine what is "in range" for specific biomarkers.

If you have a population that's skewed towards being quite unhealthy in certain ways, and you equate "normative" with "in range" and equate that with "fine and healthy" (as far too often happens), there's no actual objective standard or understanding in the goals that you try to normalize others towards.

I certainly worry about normalizing people towards mediocre or mal-adaptive brain patterns, just because those brain patterns happen to be 'normative'.

It is frustrating as someone who cares deeply about biology, the world, and human health to see "absence of negative effects that we have been made aware of/perceived, in our specific and limited circumstances" equated to "There are no negative effects in existence or possible."

All data is only guaranteed accurate specific to all of the myriad specific details of the situation under which it was gathered, and the extrapolation of statements out to conclusions about more general situations is never guaranteed to be accurate.

Given that people are not capable of observing all possible relevant factors, our data and studies tend only to monitor the factors we think to be, and it rarely communicates that blind spot or mis-step in lab work, or the difference in testing environment from one similar test to the next, that the person disseminating the conclusion didn't think of as relevant.

The way that human societies interpret data, not just in health and medicine but with everything we perceive and conclude about reality, is constantly evolving and imperfect in varying degrees.

And by definition, some portion of those imperfections and mistakes will occur in areas that we don't see at present.

...that really seems self-evident, but it still seems kosher culturally to sell ideas (particularly those related to medicine or human health) with a blind confidence and certainty, rather than encouraging multi-faceted conversation and understanding, inclusive of the existence of unseen, unconceived of risks.

I'm not sure why it seems especially common for blind confidence and certainty to occur repeatedly with new, promising developments.

(Perhaps because at points in time where there hasn't been a lot of bandying of potential costs and potential benefits back and forth, there is less nuanced discussion, and it's easier to ignore the existence of unexplored issues before exploration makes them seem more concrete?)

This is all--in case it's somehow unclear--not at all to ignore the complexities and cost/benefit analysis in undertaking something with [x]% of uncertainty vs. the costs and benefits of continuing one's life as is.

At times - many times, perhaps - it may be worth it to leap into noticeable unknowns given that cost/benefit, and the cost/benefit of how one's life might go otherwise.

Nor to ignore the potentially previously unavailable benefits of new developments.

Rather, what I find frustrating is that there is not enough nuanced discussion of costs and benefits, and a reluctance toward calling a spade a spade (or calling uncertainty uncertainty in this case), and a lot of ... black-and-white thinking underlying a lot of how options in human health and biology are communicated.

...that's actually somewhat ironic, here, in a field connected to psychology.

-

I'd been wondering since the beginnings of neurofeedback becoming a "thing" used to mediate one's psychology and brain function whether the knowledge or skill exists to reverse an unwanted effect of neurofeedback if someone engaging in it decides they are uncomfortable or dislike the result.

I hope more research emerges exploring or documenting the potential risks/negatives of neurofeedback in various situations, and discussing/exploring ways to mitigate or prepare for them. More nuanced stories and personal experiences, too; it's very difficult to communicate the details of individual experience through the common generalized descriptions of treatments.


...

Thank you again for your post.

It was a really good reminder to this reader.

It's an art that I'm having to learn in my own health journey not to assume or jump on a perceived opportunity without honestly (and as thoroughly as possible given cost/benefit) personally considering a situation and spending at least a bit of time researching after I've considered where the costs/risks are, and what to search for. And being honest with myself about the degree to which I don't have the time, mental clarity, skill, resource, or data -- given cost/benefit or availability -- to, and the degree to which I'm uncertain in choosing and making decisions.

We all always act and choose in uncertainty anyway, or otherwise will get stuck not living or choosing (although that's also a choice itself), but earnestly doing it with eyes open is much closer to 'informed consent' than anything else I've found.

-

I hope that things are in some way better for you now, three years later.

If you still keep up with this thread and are comfortable answering, how are you doing? I'm interested.

I also have this thought percolating through my head of wondering whether new, positive experiences or other things known to normalize or 'reset' disordered brain function or major hormonal-neurological pathways, or generate new neural patterns/pathways, might help.

Either way, I genuinely hope you're well.

I've struggled through a lot of severe anxiety (in a number of areas and forms) and strange symptoms myself and watched the severe impediments on every aspect of my life compared to periods when far less bound by that.

I can't imagine what it must be like to feel like that as something imposed upon you biologically/neurologically, without even really understanding what went wrong, or what the cause was, and without any initial direction for healing or remedying it. ...especially given that you were doing quite well, and fairly satisfied with your life and day-to-day functioning beforehand.

Your posts really struck me.

Their relative rarity and one-offness of bad experiences with neurofeedback being talked about in 2015, other than yours and the original poster's, too.

I felt a bit compelled to respond.

Well wishes,

-DuguXin
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Old 06-01-2015, 05:48 AM #6
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Hi DuguXin,

…And thanks for your Post. I had not heard of Neurofeedback, nor obviously seen this old Thread. So I popped off and read about it and found something interesting - NICE, the Governing body, where it comes to treatments, of the NHS - only recognises Neurofeedback as possible treatment for ADHD, and even then will not fund treatment.

I cetrainly would not subject myself to such an obviously invasive Therapy (clearly, their interpretation of 'invasive' is that it it has to be physical) , I was recently severely messed up again by a Psychologist who deliberately triggered a Panic Attack to 'prove' I was not in control.

I hope you stick around so we can get to know you.

Dave.
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Old 06-01-2015, 06:09 AM #7
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Having had a little dig, I find a PTSD Forum that has many Posts detailing negative side effects and damaging 'release'.

On chap, strangely in my view, seems to defend still having these negative episodes after SIXTY sessions.

Dave.
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Old 06-01-2015, 08:57 AM #8
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Welcome DuguXin.
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Old 11-30-2015, 09:47 PM #9
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Originally Posted by DetectableVibration View Post
I've created an account to address this inquiry, specifically. I find myself in a similar boat. It's my guess that with the growing popularity of NF treatment, the more reports of negative side effects will begin to surface. And I'd like to preface my brief story by expressing my disappointment in how blatantly irresponsible it is to not only neglect to inform new patients to NF therapy about the risks of negative side effects, but to actually instill a false sense of confidence, and reassurance in a reluctant patient by telling them that, in fact, there are NO negative side effects whatsoever. To tell a potential patient that, because this process is non-invasive, there are simply no risks involved, only benefits, is complete nonsense and borderline criminal. Furthermore, to claim only great benefits to be the outcome of this kind of treatment actually defies logic. Simply, if Neurofeedback therapy can benefit you in any way, especially significantly, it can also work in the opposite direction, in my case, significantly.
My mom is an occupational therapist who works with developmentally disabled children. I have struggled with depression and anxiety for the better part of my 30 year existence. We had both, independently of one another, read a little about neurofeedback therapy and the wonders it can do to improve so many different conditions. Because the field my mom works in, and because she chooses to stay informed, she exposes herself to demonstrations of a range of potentially beneficial treatments that are available. She saw a demonstration done by a wonderful woman, of whom eventually became the counselor that oversaw my NF treatments. I cannot stress enough about how wonderful, and deeply involved this woman is with the affects of this process on her patients. Highly intelligent and very compassionate. So, backing up, my mom was curious to see how this treatment could benefit me, and eventually some of her own patients, so she offered to pay for 20 treatments if I were the guinea pig. Having read only good things about it, I agreed. Then, after meeting with the counselor, my confidence in the therapy was even further reinforced. I kept reading that there were "no negative side effects" on nearly every piece of literature I was given. This was important, because though I had struggled with depression and anxiety for the better part of my life, it was very manageable with medication. I was functioning, and doing rather well at the time. But the idea of being free from medication was tempting. This is why I made the decision to go through with the treatments.
After the first 5 treatments (eyes open), I had not yet experienced any significant difference. Maybe a slight improvement in overall sense of well-being and day to day mood stability. From 6 to 10 is when things started to go down hill. The way I described it was that it felt like somebody had set me on fire with electricity. I could feel energy coursing through me at all times. It felt like I could light up a light bulb with my bare hands. Scary. Then, the energy I felt, seemed to get a bit looser. It turned into an internal vibration, eventually turning into a visible and eerily rhythmic tremble. My teeth would chatter, sightly, all the time. They are as I type this. I informed my counselor about this, always keeping an open line of communication with her about how the treatments were affecting me, and she decided to change the protocol to an eyes closed. From this point on there was no improvement from where I had started, when I first worked through the doors to the clinic, only an attempt at getting back to normal. Or my normal, anyway. I spent the next 12 treatments, 22 in all, attempting to regain my normalcy. Some would ask me why I continued to do it that long after I started to have negative effects. Good question. The reason I stayed with it was that my logic told me that if neurofeedback was responsible for this, neurofeedback could also be my salvation. Also, I had read in several places during my research (after the negative effects began) that if a patient displays negative effects, these are the same patients with the highest success rate after enough treatments. I think giving it 12 more treatments was being generous on my part. In conclusion, I find myself pretty screwed up. Much, much worse off than I was before. Some of the things I'm experiencing are nightmarish. A list of my symptoms below:

-Constantly trembling, internally vibrating, teeth chattering (I would compare this to the feeling of being cold, as far as how the body responds in an attempt to stay warm. Very tight, seized up, chattering, trembling, at all times.)

-Terrified of crowds, extreme social anxiety

-Bizarre head pressure on the top of my head and center of my forehead (without pain)

-Headaches more often (though this could be due to allergies)

-A wobble in my voice, a trembly voice

-Extreme tension

-Debilitating trembling due to anxiety in any social situation

-Depression

The extent of the social anxiety, along with all other physical symptoms listed, I had never experienced before neurofeedback. At all.
Hi, someone there to help me please? i have a lot problems after neurofeed terapy !
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Old 12-02-2015, 04:18 PM #10
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I HAD THE THERAPY and it did absolutely nothing for me so quit going .$$$$$
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