My encounter with neurofeedback was a positive and interesting event during my recent stroke treatment. Neurofeedback is a therapy for various types of injuries or problems with the brain, including both those considered “physical” (like stroke) and those considered “mental” (like depression).  There seems to be solid scientific evidence backing up its usefulness, yet it is not generally recognized as effective either by the medical community or by the general public. In this somewhat lengthy blog I thought I’d pass along my own experience and what I’ve learned from reading and talking to others.

Biofeedback

The basic idea of neurofeedback is to give a person feedback on what their brain is doing. My first experience in this field was many decades ago with biofeedback, which is similar in basic concept to neurofeedback, though different in what the feedback is intended to correct.

In the early 1980’s I was having chronic, severe, sometimes disabling headaches (I was diagnosed with “temporomandibular joint syndrome” or TMJ for short).  The basic cause, I was told, was that I was keeping the muscles in my jaw very tense due to constantly grinding my teeth. As part of the treatment, I was given biofeedback, or feedback on what my muscles were doing. Sensors that could detect muscles tightening were attached to my scalp and face in various places.  If I was tightening the muscles in my head, I would hear a beep.

This was negative feedback: the objective was to try to make the beeps go away. The idea was that I was largely unaware of the tension I was carrying around all the time, and the biofeedback was a way of promoting awareness of one’s own muscle tension. The treatment (in conjunction with several other therapies) was helpful, though it worked very slowly. In about a month, the headaches were less severe and in six months, virtually gone.

My experience of neurofeedback

Flash forward about three decades to December 2012, when I suffered a mild stroke. Even a mild stroke, as I discovered, is quite a big deal and left me effectively incapacitated for months. Fortunately I had no paralysis or memory loss. My symptoms included constant headaches, “being in a fog,” lack of motivation, inability to sleep, and inability to focus or concentrate. I was also diagnosed with attention deficit disorder (ADD). Even conversations longer than 15 minutes with friends were difficult and would leave me frustrated. For this, the only treatment I received was some medication (Topamax) which did enable me to get some sleep but didn’t help my other symptoms. I improved, but not very much, and at a truly glacial pace.

I consulted with some neurofeedback specialists, who suggested that neurofeedback might be helpful with my problems. Neurofeedback is similar to biofeedback in that sensors are attached to your scalp, and an audible “beeping” gives you the feedback. But instead of  detecting muscle tension as in biofeedback, the sensors responded to brain waves — the electrical activity in the brain.

The first step was an evaluation of my current brain wave patterns. This was done by a qEEG test (“quantitative EEG”). They put 19 different sensors on my scalp in different places (to measure brain waves from different parts of the brain). As I sat in as relaxed a way as I could, the sensors measured my brain waves. They sent the results of the qEEG to a testing center where this map of my brain wave activity was compared to a map of “healthy” brain waves.

What came back was a map of my brain wave activity in comparison with a “healthy” brain. In some cases, parts of my brain were giving out too many low-frequency waves, in other parts too many high-frequency waves. The evaluation was actually the most expensive part of the process; it set me back about $1000. It was also somewhat uncomfortable — the band was tight around my head.  But the process was over quickly (the whole evaluation process took about a half hour).

About two weeks later, the evaluation came back, and my “training” could begin.  The training was pretty simple, and consisted of two 45-minute sessions per week.  Sensors were attached to my scalp which could detect the brain waves. I looked at a computer screen and when my brain responded appropriately,  I got both visual and audio feedback; there was a “beep” and something happened on the screen. The beep and the activity on the computer screen, in this case is positive reinforcement; it indicates that the brain waves are within a healthy or desired range.

The visual part of the feedback takes the form of various “games” associated with the training. In all of these games, the audio part is the same (a “beep”) and is positive reinforcement. The visual reinforcement can vary quite a bit, depending mostly on patient preference.  In one, a Pac-Man type character eats a dot with each beep.  In another, stars appear in a sky with each beep.  In a third, different parts of a picture are revealed with each beep, until the entire picture is revealed, when we go to a second picture (which is likewise slowly revealed with each beep). This third game became my favorite.

Neurofeedback is never involuntary. The sensors measure electrical activity; they do not provide any electrical stimulation. It requires the cooperation, at some level, of the patient; it can be subverted at a conscious level. If one wanted to be uncooperative, one could subvert the entire process by ignoring the beeping, or even by consciously treating the beeps as negative feedback. This can be a problem with small children treated for ADD, so sometimes therapists offer children a reward, such as pieces of candy, for a certain number of beeps.

On the other hand, while the patient’s passive cooperation is required, it does not require active conscious cooperation. Even while receiving the training, I could not really consciously control my brain waves. I could cause them to go “bad” by daydreaming or not paying attention; but I was never aware of something odd or different going on in my mind. If you remain relaxed and modestly attentive, the brain figures this stuff out on its own, without conscious intervention.  You don’t have to “remember” a particular way of thinking; your brain just figures it out on its own.

Results

So what happened?  Before beginning the neurofeedback, my initial complaints had subsided just a bit. After three months, with medication (Topamax) I was able to sleep at night and my constant headaches had become less severe. But I still had constant headaches, “being in a fog,” lack of motivation, and inability to focus or concentrate.

The neurofeedback treatment consisted of about 30 sessions, usually two per week, of about 40 or 45 minutes each. After just the first session, I could tell that something was happening. (This is evidently not a universal experience, I understand.) After two sessions, my motivation and ability to focus were both noticeably improved. This convinced me that there was definitely something positive that the neurofeedback was doing for my mind.

However, the other symptoms, including the headaches, cleared up much more slowly. I would walk out of a session and not feel any different than when I went in. It was only some weeks later, looking at what my symptoms had been like just a week or two into my treatment, that I could see that my condition was getting better. After four months of neurofeedback, I was pretty much back to normal.  In fact, in some ways I am actually better than I was before; I probably had a slight case of ADD before the stroke.  Therefore, I rate neurofeedback as a clear success in my case.

History and Theory of Neurofeedback

How does neurofeedback work? The most puzzling problem with neurofeedback is that while it is clear that it works, no one knows quite how or why. One useful book for those wanting to know more is A Symphony in the Brain by Jim Robbins.

There are different brain waves associated with deep sleep, dreaming, waking, agitation, relaxation, and focused awareness. But there are also brain waves during conscious periods which are characteristically associated with various brain disorders. Why are certain brain waves in certain situations “healthy”?  No one knows for sure.  Brain waves typically seem to represent a type of thinking (alertness, agitation, relaxation, dreamy thinking, etc.) rather than any particular thought.

Another puzzle is how the training works. It seems that the training is more than learning a new way of thinking by rote repetition. The brain instinctively recognizes a healthy brain-wave pattern and once it has gotten some training in this pattern, snaps into the new healthy pattern.

Neurofeedback got started when it was found (accidentally, in an animal experiment) that neurofeedback can help avert seizures.  In the 1970’s, experiments on human subjects demonstrated that neurofeedback could turn the propensity to have seizures on or off.  They took patients who were having seizures, trained their brain waves so that the seizures would stop, then turned the seizures back on with further training, and finally re-trained them so that the seizures would stop. Such experiments were legal at the time, but would be regarded as highly unethical today; even as a temporary measure, it would be regarded as unethical ever to turn on seizures in a human patient. However, it unequivocally established the value and power of neurofeedback for some types of seizures.

Soon afterwards, people reported good results for other types of problems as well.  It is quite well established as a useful therapy for ADD.  It is also helpful in treating the aftermath of all kinds of head or brain injuries, including stroke, post-traumatic stress disorder (PTSD), depression, autism, and sleep disorders.  It’s not a panacea, but there are a large number of common problems which are helped by neurofeedback.

Neurofeedback and the Research and Medical Community

You’d think that with all this evidence, neurofeedback would be a widely-established and recognized medical practice and that there would be a lot of ongoing research on the subject.  But it isn’t, and therein lies a tale. Why is this? There are various intersecting reasons.

The first problem is that neurofeedback is completely unregulated. Anyone who can afford the equipment (which isn’t a trivial expense, but by medical standards is quite modest) can set themselves up as a neurofeedback practitioner. Inevitably this has led to problems. This should be the first “buyer beware” warning for anyone seeking treatment with neurofeedback; depending on who you get your treatment from, you may not get good results.

Inevitably some people have practiced neurofeedback in a less than competent manner, or made exaggerated claims about its efficacy.  Neurofeedback got a bad name in some quarters. Evidently one favorite shortcut is to skip the diagnostic step, which saves you about $1000. This might work if the practitioner is intuitively skilled (or lucky) and can correlate the reported symptoms with a likely brain-wave pattern, and then train the brain based on this non-quantitative diagnosis.  However, it also might not work, and you might not get satisfactory results.

To deal with this issue, the people advocating neurofeedback have organized into an association, the  “Biofeedback Certification International Alliance.” Despite its name, the association gives neurofeedback certification as well as biofeedback certification. But getting certified is strictly voluntary. No government agency or statute prevents someone from declaring themselves a “neurofeedback specialist,” advertising their services, and setting up shop, with or without BCIA certification.

This in turn feeds the second problem: neurofeedback is not generally recognized by most doctors. Most medical professionals have heard little about neurofeedback, or they have even heard negative or contradictory stories about neurofeedback, fueled by the regulation issue. They may resent it or view it as a “flaky” or alternative treatment, sort of like naturopathy or chiropractic.  I don’t want to dismiss these alternative treatments —  I’ve gotten good results from chiropractors — but neurofeedback really is on much more solid ground here.

There is a third problem here, and that is the lack of a financial incentive to research this.  There is probably some money to be made as a neurofeedback specialist, or in manufacturing neurofeedback equipment, or providing neurofeedback training. But neurofeedback is a relatively inexpensive therapy, and no one has a lot of financial incentive to popularize it, and most insurance companies don’t cover it. The leading treatment for attention deficit disorder (ADD) is drugs such as Ritalin. Yet ADD is one of the problems for which neurofeedback is most effective. What is going to happen to the makers of these drugs if neurofeedback becomes the accepted therapy?

Ironically, the fact that neurofeedback is relatively inexpensive actually increases the expense of neurofeedback for the individual, because few insurance companies will pay for any of the costs associated with neurofeedback. They’ll pay for drugs like Ritalin, but not for something that actually works and competes with the existing medical order.

It’s the same problem as with bariatric surgery for weight loss, a process which deliberately damages the body’s ability to absorb food (typically by removing parts of the stomach or intestine) in order to “cure” a patient of obesity. Bariatric surgery is incredibly profitable to medical institutions even though a MUCH simpler procedure (low-fat whole foods vegan diet) will fix the problem at drastically reduced cost and increased safety. Neurofeedback is just another manifestation of good techniques going begging because it’s hard to get rich by promoting them.

Finding a specialist

Suppose you think you might be able to use this treatment, what should you do? In general, I would look for three things:

1. The easiest place to start is to go to the BCIA website (“Biofeedback Certification International Alliance”: www.bcia.org) to find a practitioner. This includes both biofeedback and neurofeedback, and you can be certified for one, the other, or both.

2. I would also look for someone who had some sort of psychology or mental health training and experience: a licensed clinical social worker, counselor, psychologist, or psychiatrist. The reason is that a lot of problems, even when occasioned by a purely physical cause (as in my case) may come with a lot of other psychological problems intersecting, and you are looking for basic competence in the ability to recognize these other problems and make sure that neurofeedback is the right thing to do.

3. Finally, they should be someone you feel comfortable with, can trust, and can talk to.

Neurofeedback is a relatively low-cost, non-invasive treatment for a lot of problems associated with the brain. As such, it’s hard to make a lot of money from it. I hope that there will be increasing scientific investigation of neurofeedback and that it will spread as a generally used medical technique.