Most of what I write about my head is private, but sometimes there are things worth sharing with the larger world.
Monday will be my last neurofeedback session.
I have been doing NFB twice a week without a missed appointment for any reason since last October 12, almost a year. There have been no vacations, and no exceptions of any kind.
When I say “last session” the meaning is both conditional and hopeful. The strategy my practitioner uses is to continue until the client either gets significant symptom relief or can no longer tolerate the treatment. I’m in that second category.
In that case, the treatment is stopped for two months or so to let the side effects, which have been the dominant experience, fade out. At this point the benefits — whatever they may be — can be assessed. There’s a range of results from “Thanks, I feel better, bye!” through “Some things have improved and I would like to improve other things that are still bugging me” to “I feel somewhat better but we need to keep going with this.”
I’m apprehensive about this for obvious reasons. What’s going to be there when the bandages are removed? However there’s not a damned thing I can do about it other than try to relax and maintain a hopeful attitude. In any case I’ll be delighted to be done with the stress and side effects, which are very debilitating.
Apparently many NFB practitioners deny that there are painful effects. Based on my own experience that’s a huge mistake, and I would urge anyone going into serious therapeutic neurofeedback to carefully consider how bad a long period of aggravated and newly induced mental illness might be. I’ve not enjoyed the last year at all, and my career and some relationships have been permanently affected.
It’s entirely worth it to me if the result is good enough, since my alternatives were not looking very good. If you’re dealing with the neuropsychiatric results of a head injury, if you have disabling ADD-like symptoms that do not budge with other approaches, or if you have emotional problems that are life-threateningly severe and inexplicably resistant to conventional medical and psychotherapeutic treatment, then neurofeedback may be worth investigating. If your life is worth living despite your issues, this may not be for you.
I hope to report some good result by the end of the year.
Brain Lady seems to have figured out a regimen for the neurofeedback that does not cause me to veer between flailing depressive self-hatred and near-paranoiac rage. This is a good thing.
I’m also experiencing a more even temperament generally. The same problems are there, but the amplitude is reduced, as are the swings. In simpler terms: I’m still upset about a lot of things and have some pessimistic opinions, but I’m no longer staring at the wall thinking about them for 9 hours straight.
I’m also sleeping between 12 and 14 hours a night, which is both therapeutically deemed to be “good” and pleasurable.
So far my rating for neurofeedback as a therapy is a conditional positive. I’ve got improvements that are good and important, but getting there was disagreeable in the extreme.
After today’s phrenology session I had an interesting talk with Brain Lady. I found myself explaining to her why she sounded like a postscientific wacko at first, before I learned more about her. Most of the problem is her language. She speaks Science and has been working at very technical jobs in the mental health field for 20 years, but when she’s explaining things to a client she uses analogies and metaphors that have been totally ruined by New Age bubbleheads.
For example, she will say “I’m doing this site to push the energy back over to the other side of your brain”. On further questioning, she explains that this is a thumbnail description for a poorly understood phenomenon in which treating one site causes the voltages to go down there and up in another part of the brain. She doesn’t literally believe that she is pushing the energy around. She refers to treating multiple injuries as “like peeling off layers of an onion”. This sounds like she believes in concentric spheres of some intangible substance, but again it’s a simile. Her observations show her that multiple injuries often require multiple stages of treatment, but there isn’t any proven one-to-one correspondence between the injuries and the stages of treatment. And when she’s talking about electrical activity and mental acuity increasing after treatment, she calls it “waking up the brain”; another analogy. All of these things sound like something the local Crystal Anus Delver at the Metaphysical Bookhonk would say. In Brain Lady’s case, she’s working off many years of academic study and clinical experience in developmental disability, head injuries, special education, substance abuse treatment, and psychotherapy.
The other bad news I had for her is that her stuff sounds like Scientology. Wires on your head, healing old injuries, increased states of awareness, oh dear. You’re expecting Tom Cruise to appear stage left and congratulate you for choosing the right path. Here’s the hilarious part: she knows nothing about Scientology. As I was explaining how many parallels there are, her eyes got wider and wider. “Oh no, do people think this is like Scientology? That’s just a dumb cult!” Poor thing, she’s spent 20 years in the Science Hole and working with actual patients, and hasn’t noticed some weird cultural trends.
She pointed out that she doesn’t speak in Science much to clients because communicating the statistical links between voltage differentials and affective disorders to people with head injuries can be frustrating to both parties. I think I did manage to get across that she was using language and analogies that had been poisoned, though.
For my own part, I told her I had only really started trusting her judgment the day she went off on a rant about attribution errors and the importance of knowing your independent variables and not trusting your subjective observations, with several anecdotes of failed studies that hadn’t taken these precautions.
What do I do when something new falls into my life? I read a book about it. It’s just how things are done in my family. Since I’ve started neurofeedback therapy I went on the search for books on the subject. There aren’t many, and most of them are $150 tomes for practitioners. I found the one pop science book on the subject and ordered it: Jim Robbins’ A Symphony in the Brain.
The first hurdle to surmount is the writing. Robbins is a magazine journalist, and the book reads like every other pop psych book written by a magazine journalist. It’s heavy on the personal stories and light on science. Way too much of the material is from interviews. There’s about 50 pages of filler, mostly history. And, in the tradition of books about medical breakthroughs, it’s packed with case histories of success.
More seriously, Robbins doesn’t reveal a fact I know from other sources: he was commissioned by one of the players in the story. More about this below.
The history of neurofeedback begins with a UCLA researcher named Barry Sterman and his graduate student, Margaret Ayers. They developed a method for using biofeedback with EEG to help patients control their own brain waves. The technique showed promise and Ayers left to take it into clinical practice, causing the first of many wars in this field. She took with her the technician who had built the original machine, and started a company called Neuropathways. She did therapy and also sold hardware and software.
As usual there was a lot of resistance from medical and psychological experts to this new treatment. There weren’t any good large-scale studies of its efficacy, so clinicians wouldn’t touch it, and no grant money could be scared up to do such studies. Marginalized as she was, Ayers took on the defensive, messianic role of the radical truth-bringer oppressed by closed-minded conservatives. Robbins tells this story pretty well. You can see that there was merit in the therapy and that new ideas were treated unfairly, and you can also see that everyone involved was prickly enough to make things worse. However, Ayers had a lot of success helping patients who were in coma states, where no other treatment even seemed possible, and began to take clients with severely unhappy children who were violent or otherwise uncontrollable and had failed attempts at other help.
The narrative then moves on to a couple named Siegfried and Sue Othmer, and stays with them for the rest of the book. They brought their son to Ayers after the usual series of failures in other treatments for his severe neurological and psychiatric problems. The neurofeedback worked so well that they became enthusiastic converts to this new idea. In fact, they became so enamored of it that they bought equipment and trained themselves in its use. They and Ayers and Ayers’ computer programmer planned a joint venture to spread the good news and get more trained practitioners and equipment distributed.
This relationship also broke down in a mess of broken verbal agreements, patents, lawsuits, and accusations of bad faith. The Othmers started their own venture, EEG Spectrum, and began training and selling equipment themselves.
The rest of the book is taken up with examples of neurofeedback’s uses in epilepsy, ADD, injury, drug dependence, and personality disorders. Some of the case histories are fascinating. Unfortunately the practitioners and clients have a breathless enthusiasm for neurofeedback that breeds skepticism. In a chapter on ADD treatment, for example, Robbins and his interview subjects come perilously close to saying that drug therapy for psychiatric problems is the same thing as drug abuse, and that the “medical establishment” are drug dealers who don’t want to lose their hapless victim-patients. There is about a 20 page attack on the idea of treating ADD patients with drugs, and many of the arguments are essentially religious. This is unnecessary and brings down the tone of the whole narrative, and should have been eliminated.
This points to the real problem with the book, which is that Robbins has given us a pop psych cheerleading exercise about the wonders of neurofeedback that lacks critical bite. He does take trouble to interview some opponents of the technique but they’re straw men he sets up to knock down. And as above with the drug rant, there are a number of places where the tired old idea that “they” don’t want you to know about the real thing that will cure you pops up. There’s a bestselling book with a title like “The natural cures they won’t tell you about” that plays on this unreasonable idea that physicians and psychologists want their patients to be sick and take expensive drugs and treatments. It’s very unhelpful and also untrue, as you’ll find out if you spend a little time around “them”.
The problem with new treatments like this, and with their proponents like Ayers and the Othmers, is that they’re crusaders and not scientists. At a certain point in her career Ayers walked away from research because she saw so much potential for immediate clinical use. Her patients benefited but medical science did not. And the Othmers are neither clinical professionals nor scientists; they’re boosters. The fact that both of these parties make their living selling training and equipment for neurofeedback does not help things at all. Psychological therapies in the world of “alternative medicine” turn into cults too easily, and more so when charismatic leaders with a lot at stake take charge of them.
The really damning thing about A Symphony in the Brain is that it was commissioned by the Othmers and Robbins doesn’t reveal this. I only know it because people closer to the story than I revealed it. He makes a pretense of having stumbled upon this and decided on his own to write the book, so I’m not sure how exactly it happened. In any case he’s far too closely tied to them and their story. He does give Ayers a fair shake rather than taking their side, which is a good sign.
After finishing this book I thought about my own practitioner and the nature of this treatment. Like the Othmers and Ayers and Robbins, she’s a true believer. Neurofeedback approaches the Solution to Everything, kook-style, for true believers. Considering the history of “cures” for ADD and personality disorders over the years (sugar-free diets, weird psychotherapies, cult-like schooling) I can’t help feeling very skeptical. In my own case I have nothing to lose but $95 a session unless it turns me into a werewolf or a catatonic, so I’m going ahead with it. I really wish someone would do a proper study with a large patient population on neurofeedback, though. The war between conservatives and radicals is harmful to patients.