neurofeedback

[ccnm4]

My son has just begun Zengar neurofeedback. I was wondering if I am getting taken. He sits there and watches a movie with electrodes on his head. It seems like nothing is happening; occasionally the sound goes slightly in and out. The practioner seems nice enough but sits there with an intense look on her face whenever I'm watching her but when I'm not she's laughing at the movie. She shows us this pattern afterwards. I want to believe its a good thing but it seems so passive; I don't know. It is 70 dollars a session and he needs to go twice a week for 20 sessions. She is a registered Zengar neurofeedback practioner and trainer but Is this what happens during the sessions?

Another thing she said is that after a while it might work so he can decrease his medicine or he might show signs of being over medicated. Should I mess with these things; he is 4 months seizure free now and I don't want to mess with that but It would be the answer to my prayers for him to be seizure free forever. I only want what is best for him, he is 13. He takes 35 mg clobazam as a monotherapy. Although it is a benzo,it is a very good drug as it won't harm his growing body as much as many of the other epilepsy drugs. I don't think my doctor or neurologist would even consider lowering his dose based on a neurofeedback practioners opinion. HIs eeg is normal and so is his mri; so there is no way of telling if the neurofeedback is working on an eeg. Opinions please??

 

[epileric]

I know RobinN has had some luck with her daughter using neurofeedback (as well as diet) Neurofeedback - Rebecca's Story I think Stacy has used it too with positive results. You'd be very welcome to document your experience with it (good, bad or mixed) here in the History Book. The more people share their experiences with various treatments the better. I personally would be very interested.

I've heard almost nothing bad about neurofeedback with regards to seizures but that's all anecdotal. As far as I know the only scientific studies on how neurofeedback helps epilepsy have been preliminary, which is why very few (if any) insurance companies cover it as an epileptic treatment.

As far as lowering your sons dose, I would highly recommend you not do that without letting your neurologist know. Most neurologists usually expect a patient to be seizure free for a year or two before lowering their dose & eventually trying to wean them off their meds.

I also don't think that he would show signs of being over-medicated since the seizures frequency, intensity and regularity do not determine how much medication someones body absorbs or how bad ones side-effects are. I do believe neurofeedback works but just her suggesting that would make me question her qualifications.

 

[Nakamova]

There haven't been any large standardized studies done with neurofeedback to test its efficacy over a wide variety of disorders and parameters. It definitely seems to help some folks, but as you say, with no eeg evidence it makes it tough to measure progress. I would ask the practitioner to explain in detail what is going on during the eeg neurofeedback training for your son -- what brainwaves are being strengthened or suppressed and how the movie watching is accomplishing that. The nfb demos I've seen are along the lines of a video game where you need to produce the right brain waves in order to move the space ship.

Twenty sessions seems to be the threshold for getting the brain "muscles" into shape. What data there is suggests that changes last even after the neurofeedback training is over (unlike meds, whose effects disappear when you stop taking them). Keep close watch to see if you notice anything at all changing in your son's behavior, attitude, or abilities over the course of the training period. I hope to do neurofeedback later this year. Like your son, I don't expect there will be any easy way to measure progress since my seizures are currently controlled on meds. But I do hope to try slightly backing off my dose once I complete the training -- while in consultation with my neurologist.

 

[Bernard]

Zengar makes the NeuroCare Pro system. It's the system Stacy (my wife) used over a decade ago with great success. You should definitely ask the practitioner for a better explanation of the protocol he is using (SMR entrainment? QEEG guided?) and what is happening during the session.

Some of the neurofeedback systems require the subject to train/maintain brain wave activity in a certain manner in order for the movie to play or for the movie to play sound - that sort of thing. So the movie playing is the positive feedback for exercising the desired brain activity.

It can take a while before the brain makes a habit out of the new working parameters that it is learning with the training. It may seem like nothing really is happening for a while and then one day, it "clicks". That was our experience anyway.

If you notice a distinct improvement in your son's cognitive functions - memory, critical thinking/problem solving, change to established seizure patterns, etc. - that would be a good indication that the effects of the training are taking hold. With my wife (and with Robin's daughter Rebecca), these changes I mention were dramatic enough to be noticable. I would use this as a guide to discussing meds with your son's neuro.

 

[ccnm4]

thank you all of you. I appreciate your support and knowledge and input. Nicky went to his neurofeedback today. He says he feels a lot better. He has also been going to counselling weekly and massage and changing his lifestyle for the healthier so we don't know what is causing what but he feels better than he has felt in 6 years (since he had a head injury/trauma). He feels it is the neurofeedback. Thank you Bernard. We had the option of going to Vancouver (which would involve driving, ferries etc) to see Dr. Swingle ( who does a different type of neurofeedback - involving training certain brainwaves) or the Zengar neurofeedback in our hometown. I thought this would be a good beginning to neurofeeback and didn't involve over 6 -8 hours of travel for the appointment. Nicky also has anxiety and I asked him how he feels he said "I feel fantastic". That's all I can ask for. We'll keep going and I'll post again.

 

[Bernard]

Great!

... We'll keep going and I'll post again.

I'm looking forward to hearing how it turns out.

 

[eegbiofeedbk]

Zenger

Hi,
Neurocare Pro would not be my first or even second choice for treating seizures. In my opinion it should be used with great caution.

All the research that has shown permanent change in seizures has used coherence training (Walker) which is QEEG guided or SMR (Sterman, Lubar Ayers and others) and/or slow wave inhibition with SMR. Most of the studies are small numbers but one in particular that Lubar did showed changes even when the subjects were sleeping.

AAPB in their evidence based monograph rates NFB as I believe about 60% efficacious for seizures. AAPB can be found at their name with the suffix org. You can get more research at isnr with the suffix org. The AAPB monograph also has a list of the studies.

The designer of Zenger resigned from ISNR, the main research and clinical body, because he refused to sign the Code of Ethics and be bound by it. Anecdotal reports seem to indicate that it is good at reducing anxiety and to the extent seizures might be psychogenic and anxiety caused it may help. In deed skin conductance training has also been shown to have a positive effect on anxiety related seizures.

However, NFB treatment for seizures should never be done without a quantified EEG run through a database that meets US FDA requirements such as Neuroguide lappliedneuroscience with the suffix com or a similar well validated database that can measure coherence and phase without distortion. QEEGs are more sensitive than analog or even digital non quantified EEGs and can detect abnormalities that would indicate pronness to seizure activity though the raw EEG signal may appear as normal. These other measures can be used as objective evidence of progress. Z score training (training to normalcy of the database) is also available to prevent over training or under training

As far as I know Neurocare is not an FDA registered amplifier. American law prohibits the sale of EEG equipment to non licensed people, i.e. one must be a licensed healthcare provider or to patients unless prescribed by a healthcare provider empowered to do so.

Furthermore, there are standards of practice that NFB providers are suppose to adhere to. These standards are at [isnr. on the home page near the bottom there is a link to the published article. One should also consult bcia with the suffix org. BCIA and the ISNR standards of practice lay out the minimal standards for competence for practice and certification by a manufacturer of an amplifier is not included in the Standards as a benchmark of competence, though practitioners must be familiar with and competent to use the hardware they employ.

Dr. Swingle is a fine practitioner, quite competent and well worth the trip. It is where I would go and where I would take my son or daughter for treatment and evaluation.

Best Regards,
Gerald Gluck, Ph.D. LMFT
Sr Fellow BCN (Board Certified Neurofeedback)
www.brainhealingcenter.com

 

[Nakamova]

Dr. Gluck -- welcome to CWE!

It's interesting and helpful to get your perspective on neurofeedback practitioners and training standards. I hope to give it a try later this year, so the more info the better.

Below are some of the sites you reference:

http://www.isnr.org/
http://www.aapb.org/

 

[eegbiofeedbk]

Thank you very much. I would like to take advantage of offering a 10% discount to forum members. How do I go about that?
Best Regards,
Dr. Gluck

 

[grateful7677]

CT Neurofeedback

Any good resources with proven results for people with TBIs in lower Fairfiled County area? Please share!

Thank you!

 

[ccnm4]

Nicky continues with his neurofeedback and continues to feel better. We both have anxiety and I am starting to go as well. I too can feel the difference. Thank you eegbiofdbk as you have stated it seems to be helping Nicky as he also has had psychogenic seizures in addition to his epileptic complex partial seizures. I appreciate your words of caution and will continue to monitor him but so far all I can see is a much more positive child. Dr. Swingle has had good results as well with psychogenic seizures with his method of neurofeedback and this was how I first began researching neurofeedback for my son; with his combination of psychogenic and epileptic seizures.

 

[eegbiofeedbk]

hI ccnm4
I am glad Nicky is doing better. I hope that continues.
Best Regards,
Dr. Gluck

 

[eegbiofeedbk]

Hi CT Neurofeedback,

I am sorry but I do not know anyone in Fairfield County CT. You can go to bcia.org and isnr.org and look for a provider near you and call and start your search.
If there is something else I can do to assist you, please ask.
Best,
Dr. Gluck

 

[eegbiofeedbk]

Choosing a practitioner in neurofeedback

Hi,
I hope I got this right. I tried uploading two attachments. One is an article by a colleague Cory Hammond FIRST DO NO HARM and the second is the Standards of Practice for Neurofeedback, both of which were published in the Journal of Neurofeedback.

I thought I would try to make these easily available rather than have people search the net.

Hope it worked.

Best,
Jerry Gluck

 

[Bernard]

... I would like to take advantage of offering a 10% discount to forum members. How do I go about that? ...

:mrt: Details sent via PM.

... One is an article by a colleague Cory Hammond FIRST DO NO HARM ...

Abstract:
http://www.informaworld.com/smpp/content~db=all~content=a902216704

Full article available for download with Facebook acct:
http://www.scribd.com/doc/46930527/hammondarticle

... and the second is the Standards of Practice for Neurofeedback ...

Full article (.PDF):
http://www.appliedneuroscience.org....actice for Neurofeedback and Neurotherapy.pdf

 

[Jean A]

Hello, ccnm4 and others.

Thanks for posting this topic. I'll be following Nicky's progress with interest, and am glad to know he is feeling better.

I am a social psychologist who began exploring neurofeedback about five years ago to deal with cognitive, sleep and mood problems that followed treatment for cancer (often called "chemobrain"). I began with traditional neurofeedback, which works to change particular brainwave patterns at particular sites, but had only minimal success (partly because there is no research yet on what atypical brainwave patterns are characteristic of chemobrain.). When I switched to the Zengar system, my symptoms cleared almost immediately (I had been living with them for more than seven years).

Since then I have been conducting a study on chemobrain, using the Zengar system. 21 of 23 participants have had nearly complete elimination of their symptoms; I hope to publish the study in a medical journal within a year.

I have never worked with someone with seizures, so I can't speak to the results you could expect. However, I want you to know that the Zengar system is completely legitimate, just based on a different way of approaching the brain than the more traditional systems. It does not require a QEEG, or any development of a particular treatment protocol, and so the BCIA certification that has been mentioned here is not necessary or appropriate.

I'm sorry that you have been exposed here to some of the internal disagreements and personality conflicts within the field of neurofeedback. My best understanding, after reading and thinking and going to courses for the past five years, is that there are at least four different approaches to neurofeedback that are all effective. It is sort of like dieting---low carb works, low fat works, vegan works---if you have found something that is effective for you, hooray!

Keep us updated, and good luck.

Jean Alvarez

 

[Jean A]

And for Grateful 7677...

Dr. Ed O'Malley is a very experienced neurofeedback provider in Norwalk. His primary area of expertise is sleep issues, and that may be all he does, but if i were you, I would definitely contact him. He may also work with TBIs, or may have a colleague who does. He is completely trustworthy, and will not encourage you if he is not a good person for you to work with.

To find him, google "Ed O'Malley sleep".

Good luck to you.

Jean

 

[eegbiofeedbk]

Hi Jean and others,

There really is, at least for me, no issue of politics or personality. Nor should these issues be dismissed as such or made into such.

There are real issues of science and practice standards and as a member of the American Psychological Association these sorts of things have applied to psychologists for decades. NFB is maturing.

Just as psychologists have standards of practice and ethics, so does the field of Neurofeedback. Unfortunately very often members of the public are not aware of these standards and the questions to ask a provider. I was trying to make people aware that these things exist and there are answers to their questions.

In the US any healthcare provider can buy an EEG amplifier and with no training set up a practice. A lay person can do the same if they find the right website to go to. In some states it will be illegal for an unlicensed person to practice, but not in all depending on how they advertise. It would be illegal to use and possess the device if not licensed under FDA regs. FDA regs prohibiting selling to unlicensed persons unless prescribed by a healthcare provider.

Some manufactureres offer 4 or 5 days or a week or two of training, but the field has found that to be inadequate for the safety of the public and there is a public blueprint of knowledge that providers are suppose to be able to master.

There is a whole science behind EEG amplifiers, what they do to transform signals and what is in fact being trained and how to read an EEG. People are entitled to know the breadth and depth and extent of the practitioner's training and the standards of manufacture that are followed. This is similar to the APA's code that covers what a good pscyhological test is, that is, there are standards for validating educational and psychological measures AND publishers are restricted to whom they may sell different tests.

The field of Neurofeedback has matured to that level due to hard lessons learned at the expense of patients. Further, there are FDA regulations that govern the distribution of these devices.

Iatrogenic effects of practice and adverse events went largely unreported. Some of the uneven research results are due to less than competent people (in NFB) doing the research or due to equipment which was substandard or used in substandard ways. Such outcomes hurt everyone, consumers, providers and insurance companies.

My purpose is to simply educate not be political or personal. These codes that ISNR and BCIA have were the result of more than 10 years of work in one way or another.

Best Regards,
Jerry Gluck, Ph.D.

 

[Jean A]

Jerry, like you, I have concerns about people hanging out a shingle without adequate preparation for what they are going to do. I think it would be more transparent if you would acknowledge that different modes of neurofeedback require different kinds of preparation, and that BCIA certification is an appropriate requirement for many, but not all, neurofeedback approaches. I took a BCIA-approved didactic course, and the Zengar approach was never even mentioned. I appreciated what I learned—as good general background in the field—but very little of it applies to what I do.

I'd be happy to continue this conversation a bit more off line, but the internal differences in the neurofeedback community are certainly not of interest to the people on this list. I want, as I trust you do as well, for people to get the help they need, whether it is from the approach I prefer or from another. Clearly Nicky is doing well with the approach his family has chosen, and that is certainly cause for rejoicing.

Jean Alvarez

 

[eegbiofeedbk]

Hi Jean,
Suffice it to say I do not think different forms of neurofeedback require different levels of preparation except to the extent one must know the system one is using, its limitations and rules of programming and how it effects change in the person being trained. That people can USE different systems with varying levels of training is absolutely true, e.g. HEG or ZENGER. Whether they can do that effectively or safely and know the effects for large numbers of people is an entirely different question, so what may be ok for an individual and show small group results is not a basis for professional standards. That is the basis of the Hammond and Kirk article posted here earlier and the Standards article in the Journal of Neurotherapy. As more and more people use NFB, i.e. the sample gets larger greater variations in the population, merely by chance, are going to be included and thus these issues become more important. That is the thrust of the collective research behind those articles.

People who use NFB need a higher level of preparation than they generally have now, that is a higher core standard, and then additional prep in the areas they want to work clinically or at home if home trainers. It is also certainly true that people with a narrow focus of training can act as technicians under the supervision of a well trained clinician where the scope of practice and training is well defined and supervised. But that clinician needs a wider and deeper scope of training than is currently demanded.

Best,
Jerry