EEG Neurofeedback

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Sounds good! In the meantime, I'm experimenting with the possibilities of medical marijuana. It is high in CBD the active ingredient for relaxation, low in TCH the stuff that gets you high, although the CBD has a subtle buzz of its own. There have been some positive tests here. They are finally making it 'semi-legal' in the states with a lot of controversy.

About applications. Obviously the average user would have a difficult time interpreting what all those EEG signals mean. So some visual, audio or tactile feedback would be good to tell the user they are in the "right" state. What would be ideal would be a portable device or the smart phone to carry around to check in from time to time, give a warning when you're entering the "danger zone". The EEG headset would be rather cumbersome to wear in public, while jogging or biking or whatever, the hairband Insight would be less conspicuous.

I would project that when the user is training to get into a proper state, meditation and breathing exercises would be very conducive to get there. Ideally, the user would get proficient enough to enter that state at will WITHOUT the tech device.

I am a real proponent of: Meditation, not medication!
 
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SlimBlue

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Tbh I've never found CBD to be of any benefit in reducing my seizures, and even stops working as a mild sedative once you get used to it. In fact it begins to have the opposite effect after a while :(

Everyone is different though, and hopefully the synthetic medications undergoing trial now will turn out to be of more use to us.

These days I'm more interested in exploring treatment like neurofeedback..
 

Nakamova

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I would project that when the user is training to get into a proper state, meditation and breathing exercises would be very conducive to get there.
Just a note of caution -- there's been speculation that meditation might provoke a seizure in some people:
"Meditation has been shown to facilitate physiological (i.e., normal) neural hypersynchrony (the coordinated firing of neurons) in EEG studies, especially in limbic brain areas that are frequently involved in seizure generation. While unproven, there has been concern raised that the regular practice of inducing neural hypersynchrony by meditation could theoretically raise the risk of “training” neurons to fire in a hypersynchronous fashion, giving rise to the risk of pathological neural hypersynchrony that may give rise to epileptic seizures."
-- from https://www.epilepsy.com/articles/ar_1150815334

I don't think there have been any conclusive studies done to date. Hopefully this will get cleared up in the future.
 

kurt.othmer

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I wanted to share a wonderful story about neurofeedback and seizures from a mom who also happens to be a Ph.D. Psychology professor. Her search to help her son lead her to neurofeedback. In addition to her personal family story she goes into some wonderful depth in the article building the case for neurofeedback; which makes this a perfect link to share with others who might be interested in knowing if neurofeedback is worth a try, and supported in the research.

http://news.eeginfo.com/?p=1002
 

Bernard

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Thanks Kurt.
... Neurofeedback made a huge difference for our son and our family. Given the solid research basis of the effectiveness of this treatment, I am not sure why it is not widely used. ...
lol... It's maddening. Where is the EFA on this issue? They certainly went out of their way to help Cyberonics bring the VNS to market.

Neuros learn nothing about it during their degree plan and can't profit from it when they go into practice (unless they invest more time/effort/money in learning a new technology).
 

kurt.othmer

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Where is the EFA on this issue? They certainly went out of their way to help Cyberonics bring the VNS to market.
Thank you Bernard for your supportive words. I think medicine has a bias towards things that more obviously bleed, are implanted, severed, or show obvious physical evidence of the doctor's actions. I think this is rooted in fear that anything less is just placebo and is merely the brain magically believing you are better.

Technologies like VNS, and more recently rTMS that received approval a few years back, make a doctor's activities quite obvious. A magnetic pulse causing someone's arm to jump involuntarily with rTMS leaves no question that the doctor is wielding a powerful tool. It's natural then to argue that the powerful tool has medical efficacy for a specific condition.

When techniques look less "violent," it's natural to wonder if they are simply placebo. Of course taken alone, one doesn't care. If your seizures are suddenly down from 100 a day to 0, if it was just a magic sugar pill, fine. But for science, and for the rest of us, we all want to know that something is valid and is not simply placebo.

I give talks more extensively on the science and the research in my weekly webinars. But the argument that wins the day for me is the work done back in the 70s on cats. Dr. Barry Sterman trained cats to make a certain brain pattern by rewarding them with food. This lead to the later discovery that when these same cats were exposed to toxic chemicals they were more seizure resistant than other cats. Happy "placebo" expectations cannot explain these results. (there is a joke here about cats ever having happy expectations -- but I'll skip it). The bottom line is that the cats had a higher seizure resistance versus other cats in the lab who had not done the EEG training. Many studies have confirmed those findings in humans.

But to your point of big funding and big attention by foundations and organizations. I think this work isn't "dangerous" enough. It's just a simple mirror for your brain that allows you to heal through seeing your brain activity. It's just you rallying your body's ability to heal itself, using a powerful digital mirror of regulatory activity in your brain. Activity that you've never been able to see before. This process is natural and surprisingly powerful and robust.
 

AlohaBird

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To Kurt, Bernard, or anyone else who might know,

Is there any way to do neurofeedback at home? It's just not available where I live (The nearest one is a plane ride to Honolulu away).
Are there any neurofeedback devices that are real and actually work? (Lots of slag out there on the webs).
I have the patience and general know how to work with anything given an instruction manual. I've had seizures for thirty years and have researched brain function extensively (I'm a retired professor. I know how to do research, What is quality research and what is junk science, etc.). Not bragging but sad truth, I often know more than my alleged neurologists about anything not pill related e.g. ketogenic diets.

I think I could do this myself given the proper equipment.
 

Nakamova

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I was interested in the same thing but haven't found anything short of training as a neurofeedback specialist myself. There are practitioners near me, but none of them are familiar with the NFB protocols for epilepsy or are interested in learning them. It's too bad because I think I'd be a very "safe" candidate to practice on (because my seizures are controlled by meds, but my interictal brainwaves are abnormal.)

NeuroSky markets basic headsets (only one input location) and training software for generic things like "focus" and "meditation" if you wanted to play around with it. http://store.neurosky.com/products/mindwave-1
 

AlohaBird

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Yes, in the internet research I've been doing, the "focus" seems to be on getting kids to focus. Marketing to the parents of kids with ADHD. I don't think I have trouble focusing. One would think that the protocol for epilepsy would be different.
 

kurt.othmer

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Hi AlohaBird and Nakamova,
We've been teaching professionals how to do neurofeedback for 30 years now, and have worked with most of the serious medical systems currently on the market, and have been intimately involved in the development of most of the market leaders of FDA registered neurofeedback systems. We are in an exciting time right now and there is an explosion of development in the field. People are finding out that this works and they are in a rush to make it cheaper and more accessible. Much of the new development then is focused on the inexpensive and unregulated toy market at the moment. We are running in the opposite direction, training ever more serious medical professionals and seeing the most exciting innovation in the strength of this work, and thus the need to include ever more competent, careful and caring professionals.
My advice is to talk to people who are doing this, and find out what they are using and benefitting from. I say with the strong expectation that you will find your way to an experienced mental health professional who has significant training and time in practice offering neurofeedback. The distance between what a medical professional can do with medical equipment, and what a toy over the shelf can do is quite large, and rapidly widening. But again, don't take my word for it, just ask around, exactly like you are doing here. Hopefully others will chime in with what is working for them.
 

AlohaBird

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I would gladly go to a professional if such a thing existed where I live.

This is why there will probably be a growing market for "DIY" options in the future. Unless you live in an urban center, you are on your own.
 

Nakamova

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And even if you live in an urban center (as I do), NFB practitioners may be unfamiliar with epilepsy protocols and unwilling to add them to their practice.
 

kurt.othmer

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@AlohaBird - yes, I completely understand limitations regarding distance and so on. I just hope people understand the difference between something that might be geared for home use, vs a professional system in the hands of a trained professional with years of experience.
@Nakamova. Indeed, many professionals choose not to work with seizures and epilepsy. My sentiment from above applies here as well, that there is great variation in approaches and equipment, not to mention years of experience and focus on a given client population. It's such an exciting field, but there really is an exploding market of things called "neurofeedback" and "brain training".
 
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@Nakamova - if I recall, you're in the Boston area too (surviving this weather, i hope! pure madness...)

I've been training for a few months with the Neurodevelopment Center, they have a satellite office right outside of Harvard Square. They have ties to Dr. Walker, and learn a lot of their current epilepsy protocols from him. I would highly suggest giving them a try. I've seen changes in my seizure activity- both in frequency and in type. I'm always happy to have a conversation about it, if you'd like.
 

Nakamova

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When I met with people at The Neurodevelopment Center at a presentation in 2011, they didn't seem interested in treating epilepsy, and they never returned my follow-up emails...

..But it sounds like they've changed! And it looks like they've moved their offices too -- now they're located a little closer to me.

It's great to hear that it's making a difference for you. :)
 

AlohaBird

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It would be great if we could get HMOs to cover neurofeedback visits. Then I could go to Honolulu once a week or so.
 

Nakamova

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It would be great if we could get HMOs to cover neurofeedback visits.
I think that some of them cover it as treatment for ADHD. But I have a feeling NFB for epilepsy won't be covered any time soon. I wonder how it compares to what the insurers pay for medication?
 
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Does anyone know whether my son's neurologist was right when he said neurofeedback works only for people who develop auras before a seizure?

I'd like my son (an adult) to try neurofeedback so he can go on the least potent meds, but his seizures are almost exclusively nocturnal, occurring about once monthly just before he awakens (or so we now think).

I don't want his neuro to be correct in this one.
 
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Sorry about the duplicate posting. After the first posting in the LIbrary, I realized I had erred.I am glad he was wrong, though as I said in The Kitchen, I am not fond of him. He seems not to appreciate that both people with epilepsy and their loved ones are looking for answers. He prescribes drugs and discounts meditation, neurofeedback, and other "alternate" therapies. I wonder where the good neurologists are.
 
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