Eric Coates wrote an interesting piece on neurofeedback on the Mad in America website, Neurofeedback is Not for Everyone: The Dangers of Neurology His experience with it and the subsequent comments on the article taught me what to look for in finding a qualified practitioner for Chris. Not everyone who practices neurofeedback has the right credentials, as I learned at the first center that I called where no one on the staff had the critical letters after their name. The director of that center said that he was pulling together the right staff, but it was going to take time. There is a skills gap in making neurofeedback more available to the general public. The Coates article was the catalyst for me to dig a bit further. Why had I not realized sooner that neurofeedback could be useful for someone with a diagnosis of schizophrenia? I accept that “schizophrenia” is a term that covers a variety of symptoms, making it a rather meaningless term. What is really at stake with “schizophrenia”, what prevents the person from forming meaningful relationships, working full-time, furthering their education, paying income tax, are the negative symptoms that affect motivation, energy, and logic. Focused listening, which Chris has been doing for the past year, has been very helpful in addressing some of the negative symptoms. I believe that doing it daily has enabled Chris to successfully get off his medication and demonstrate increased logic. However, his motor tics have not abated. They are a huge impediment to his moving forward. Part of me thinks that he can control the tics, but chooses not to when he’s around me, his way of expressing dissatisfaction with the status quo. It’s the motor tics that brought us to neurofeedback. Neurofeedback is a type of biofeedback where sensors are placed on the scalp to pick up real-time displays of brain activity to teach self-regulation of brain function. It strikes me that outside of research facilities neurofeedback therapists are concentrating their initial efforts on the large demographic of parents of school children who want their kids to succeed in school through greater focus and concentration. Like Tomatis Centers they promise improved attentiveness and impulse control; a decrease in hyperactivity; improved academic, athletic, and artistic performance. “Reduced extraneous movement” is one area that caught my attention. There is ongoing research into the effectiveness of neurofeedback for disorders such as autism, anxiety, depression, chronic pain, etc. The staff at the next center whose website I looked at had the right credentials and the director had been working in neurofeedback for the past thirty years. Chris prepared for the first appointment by answering a lengthy questionnaire focusing on why he was seeking neurofeedback and what else he had tried in the past to alleviate his symptoms. The two of us put our heads together to tally the many treatments he had tried and articulate why further treatment was being sought. To be clear, the therapies he has tried to date were not directed at the motor tics per se, they were part of ongoing attempt to improve his logic, get off his medications, act “normal”, advocate for himself, etc. He e-mailed the questionnaire to the center and received back an on-line cognitive assessment which took about 20 minutes to complete. We met with the director of the center that same day. The staff person at the Center encouraged me to accompany Chris as I would have further useful information to contribute. “So, tell me why are you here?” he asked. I sat on my hands and kept my mouth shut, knowing that Chris would reveal all. Chris said that he had motor tics. If there were any doubts that Chris has motor tics, he quickly dispelled them. Throughout the interview he was flopping around on the couch like a newly caught fish on the bottom of a boat. “Are these the tics you are talking about?” asked the director at one point as Chris winced and wiggled. Anxiety, motor tics, schizophrenia, OCD, Tourettes, emotional lability, whatever it is that Chris is suffering from, it was all there on display. Chris rambled quite a bit, there was no coherent time line of events and a vast chasm between how he interpreted what happened to him and how I saw it. He said that he was first hospitalized at 18, whereupon I interjected to say that it no, it was at 20. When the doctor asked him what he felt contributed to his psychotic break, Chris pinned it firmly on his alcohol intake during his first year at college, and alluded to having a drinking problem that he believes has continued unabated to today. The director then started talking about addictions and I had to raise my finger as a point of interjection to keep him from heading down the wrong path. “Chris, from what I’ve seen, you have no alcohol problem, unless you consider having an occasional glass of wine or a single beer an alcohol problem. If anything, I’d say you have a guilt problem and somehow has convinced yourself that you’re a semi alcoholic. You may have had too much beer during your first year at university, but who hasn’t done that? This is where Chris got angry and started to throw his father and me under the bus, alluding to OUR supposed alcohol problem. But, he quickly forgot where he was going with that and calmed down a bit. Had I not intervened, the doctor would have assumed that Chris has a drinking problem, which he patently does not. We limped through the rest of the interview. There was no logic on display. The story coming out of his mouth was not the story coming out of mine. I was totally confused trying to keep up with where Chris was going. The two of us presented an emotionally wrought, confusing narrative. We were pathetic. I did learn one thing though. Chris told the director that he hasn’t been on medications since September, to which the director nodded approvingly. “We can get a much clearer picture of what’s going on with your brain,” he said. “So when he was hospitalized the second time, what do you think was the reason?” the director asked me. I said that in retrospect I first believed that we were trying to push him back to college and he didn’t want to go, then I said that with the passing years and further reflection, I began to think that the supplements he was on were good but not good enough to keep him from relapse, then I said that from the vantage point of even more passing years, it’s anyone’s guess as to what was happening. The correct answer, I assume, the one the director would say, is that his brain waves are stuck in an abnormal feedback loop and he hadn’t learned how to control them. Reconfiguring your brainwaves for optimal mental and emotional health sounds plausible to me, but is it just another therapy that makes intuitive sense but doesn’t really work well enough for most people in practice? On the other hand (and this is important, so listen up), why should Chris or I care about how it works for most people? it really only needs to work for HIM. I’ve heard people say that they overcame their afflictions (let’s assume it always related to a lack of focus) through niacin therapy, through psychotherapy, through Focused Listening (Tomatis therapy) through the power of love, through Bible reading. For example, years ago I increased my focus big time through niacin therapy, but when I recently tried Lions Mane and niacin hoping for even more, nothing happened. Perhaps the niacin therapy I did years ago set me up for life. Similarly, through listening to high frequency mostly Mozart violin concertos, I stopped a lifelong nail biting habit. That was a visible expression of any anxiety that my body and mind were dealing with, but I had no idea that Focused Listening would fix it. I always hope that the latest treatment tried will be the last treatment tried because it delivers on the promise. More to come on neurofeedback. Stay tuned. You might also enjoying watching Dr. Daniel Amen on the most important lesson learned from 83,000 brain scans |
Hi, I had EEG SLORETA done in the summer of 2020. I had 12 sessions total. I had a traumatic brain injury in 2017 and went under anesthesia in 2019 which left me not feeling right all the time. So I started the Neurofeedback but I was never told or warned of any side effects. Apparently several times I had mentioned different concerning issues I was having but I didn’t equate it to the Neurofeedback, I was apparently having memory loss right away so I believe I wasn’t able to retain enough information to connect the dots and the only reason I can say these things now is because the dr and technician were taking notes on what I’d share with them but they weren’t stopping me from continuing with the treatments or getting me appropriate medical attention because some of the things I was sharing was very dangerous and damaging. Doing this Neurofeedback has ruined my life and my 3 children’s, I have complete memory loss of about 90% of my life now, I depend on emails, text messages, phone calendar, time dated photos on my phone and medical records to retrieve my memories, I have tinnitus that won’t go away, I have hearing loss, I have lost almost all of my tactile touch sensation, I’ve lost almost all of my pain sensation, I’ve lost some of my taste, my vision is very odd if I look through my rear view mirror in my car my vision becomes like looking through a fish bowl and it doubles and quadruples what I’m looking at, I have no concept of time at all, I can’t remember my past and I can’t seem to plan my future because my mind doesn’t see being the moment I’m in, I’m stuck somewhere in my mind, I’ve never been a depressed person in my life and I have been depressed non stop and I’m not a person that really cried before maybe I’d cry 2 to 5 times a year, now I’ve cried everyday since this past July 2021, my body and my brain and mind stopped being able to process stress, I have weird heart palpitations, I can’t sleep right, I have anger issues, I’ve isolated myself away from everyone, I don’t act or feel like a mom anymore, I barely deal with my children anymore, somehow they have basically been erased them from my brain/mind, I don’t feel any proper emotions towards my children or anyone, I have spent months laying in my bed only to get up to use the bathroom, eat, go to the drs, there is so much more, it has been a nightmare, I did stop eating and sleeping in the summer on 2021 in the hopes of dying, but that didn’t work (by the way I have never been suicidal in my life before, I’ve always loved myself) unfortunately I don’t love myself anymore at all. I’m reaching out to you because I’m trying to find out if there is a way to reverse the horrible side effects of the Neurofeedback.
Please if you coukd get back to me and let me know.
Thank you,
Cathy
Hi, Cathy,
I am very sorry for the intense pain you are suffering, and I applaud you for leaving no stone unturned in your quest to get better. You are no doubt by now very wary of medical doctors and people offering non-invasive neurological treatment. I do recall that the Mad in America website did a number of articles/opinion pieces on neurofeedback. http://www.madinamerica.com Go to their search engine to find further information. A functional medicine doctor may be able to help. That doctor would take a number of blood tests and run cognitive tests. The functional medicine approach to treating patients of varying medical conditions using supplements that target specific bodily conditions. Thanks for reaching out to me and good luck with your journey. Stay strong. Healing can take a very long time.