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Most of my friends know that I’m more than a little quirky. I have a mix of some awesome (in my opinion at least) traits but also some more challenging ones. I have increasingly been aware that these quirks are arguably a mixed bag – diagnostically they fit in the autism spectrum (specifically a mix of aspergers, adhd, depression, anxiety, etc.) but practically it seems better to see these traits as more of a state of being rather than a disability or an “illness.” (good books of late that argue this point include Neurotribes by Steve Silberman, Uniquely Human: A Different Way of Seeing Autism by Barry M. Prizant, PhD., Bright not Broke: Gifted Kids, ADHD and Autism: Why twice-Exceptional children are stuck and how to help them – by Diane M. Kennedy, Rebecca S. Banks, with Temple Grandin and pretty much any book by John Elder Robison).

And so I’ve been looking for ways to celebrate and enhance my positive quirks (which is a big driving force behind this blog) but also learn better how to mitigate and/or better live with the negative stuff.

I’ve done a lot of things in the past in the mitigation side of things (some of which I will talk about in the future on this blog) but for the last month I’ve doing something new – neurofeedback and biofeedback training.

There are two components to what I’m doing.

Neurofeedback – For this I visit a therapist’s office. I am then hooked up to a small EEG machine which feeds into a laptop computer. The eeg hookup itself is super simple, two electrodes which attach to different spots on my head (using some goopy saline stuff) and one electrode which attaches to my earlobe (this one is a ground/reference point). The machine is kinda fussy and takes awhile to set up but once it is underway, the computer screen shows my brain wave patterns.

Once we are underway, the technician asks me a set of questions on the symptoms I have been experiencing lately (issues with sleep, focus, creativity, headaches, etc.) and then the software takes in that data plus the results of my previous sessions and creates a set of protocols for the day – normally it is three blocks of time, with different alignments for the electrodes to target different kinds of brain waves and different regions of the brain.

So for instance today, I did 13 minutes in the first block of time, 8 minutes in the second block of time and 8 minutes for the third block of time. Each block of time is broken into two minute segments with a 20-30 second break between each segment, and then a longer time of break (2-3) between the blocks, most of which is spent in moving the electrodes for the next block of time.

During each block of time, I see a set of rapidly changing fractal images, surrounded by other data indiciators, a colored bar (that I’ve heard conflicting reports on what it indicates), a moving EEG graph line and other data which I understand is mostly relevant to the technician/therapist. Most of the time I am instructed to click on the mouse everytime I see a certain intense sky-blue color in the images, which often comes very quickly (multiple times per second), other times very rarely (20 seconds or more with no blue).

Strange as it sounds, it is doing something. Each neurofeedback session (which ends up taking about an hour total between the time on the EEG machine and converations/check-ins with the therapist and/or technician. So at the end I’m mentally exhausted. And yet as the day continues I feel deeper levels of energy and focus, as well as increased toleration with challenging sensory situations (especially noise).

Biofeedback – For this I use a very simple devise, which I bought online on the recommendation of my therapist, an Emwave (specifically the Emwave 2 handheld). It measure heart-rate variability (HRV), which is supposed to represent one’s experience of stress. The human interface is simpler than the EEG, just a small clip that attaches to your earlobe.

Once is hooked up, I can get feedback in one of two ways, either by watching a set of colored lights on the machine itself (which starts out blue, then turns green and finally purple as my HRV moves into a less stressful/disordered state) or by hooking the emwave machine up to a computer via a usb cable and then playing a series of games that are controlled by the HRV feedback.

I have learned that I can control my HRV to some extent, by simple focused and slow breathing, which has been hugely helpful, to such an extent that I can sometimes make myself feel less stressed by simply doing the breathing exercises alone (with the help of the emwave devise).

The problem – I’m seeings results which is awesome, but there is a huge problem – COST. The emwave thankfully was a one-time purchase ($200) but doing Neurofeedback is something else. My therapist uses the Brainpaint system, which from my online reading sounds like is the gold standard.

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By going through my therapist, it is costing our family $75 per day (at least most days, when I can work with the technician in training rather than the Psychologist, but when I see her it costs $150/hour) and it looks very unlikely that insurance is going to pay for this. So… it looks like the past month of brainpaint training has cost us around $1700! (yikes!)

I’ve scoped out the possibility of buying the brainwave system itself but it actually can’t be bought but only rented – $450/month if to a health care provider or $650/month if to a regular person (but the later option isn’t available if there is another health care provider within 50 miles who offers brainpaint). ┬áThankfully my wife is an MD so we could get the machine for $450/month, but even that is pretty steep and is dependent on us figuring how to run the machine ourselves by way of only the training the brainpaint company offers online.

This is frustrating to me and frankly calls into question the ethics of companies like Brainpaint selling their services so expensively. Given the fact that this equipment can help so many people (not just those of us on the ASD, but also has shown good results with ADHD and PTSD), it is inexcusable that it costs so much.

And so I’m looking at other options. There are a variety of different EEG machines/systems available. Those that are FDA-certified as medical devises are super-expensive but there lower-grade models that are not FDA-certified and instead marketed for entertainment/hobby purposes, but of course I can’t help but worry will one of these machines work as well as the high dollar version?

So far the machines that look both promising but also more priced more reasonably are:

The online reviews for these devises are mixed bag. Predictably the cheapest model got the harshest reviews but many of those reviewing sound like they had unrealistic expectations of what the machine can do. The others got much better reviews but cost much more, and still got some negative reviews.

So… I decided to try the Mindwave. It is supposed to arrive tomorrow and I’m eager to try it out. Certainly I’m not expecting the same kind of results I have been getting from Brainpaint but I assume that I can make up for lower efficacy by doing a higher dose (or to say it another way, do longer training per day).

Anyway I’ll hopefully know more soon and will share with my readers. I’m hoping that my detailed observations will be helpful to others who are considering the use of neurofeedback training.