adverse reactions in neurofeedback

DhasaDreamer · 10-27-2010, 10:41 PM

FINALLY I found others who have suffered damage from LENS therapy. The "Emperor's Clothes" of EEG neurofeedback in my opinion. My condolences to everyone else who has suffered permanent harm from LENS therapy. As my son also did.

I took my son to an EEG neurofeedback professional to have traditional EEG therapy. She talked me into doing LENS instead. Much more expensive per session. And my son went unconscious as she was doing it. Had a seizure and sustained permanent brain injury. He now is color blind and has very poor memory for faces, among many other injuries. Both the result of brain injury from the LENS. He was 10 years old.

I would advise people NOT to do LENS. I now realize it is more "voodoo" than legit. And you never really know how "skilled" the people doing it really are, other than what they "tell" you.

Lopi was wise to quit after only two bad sessions. We quit after the first. When I called her afterwards, I didn't want to hear any of her "hooey" about how his reaction "showed" that he would respond well to further LENS therapy. My son had a seizure, which he had NEVER had before, and became unconscious under her administration of LENS. There was NO WAY I was letting her touch him again. Ever. It took years to discover all the damage that one session caused.

My son suffered for three years with the widespread cognitive DAMAGE from the single LENS session he had. He finally was able to regain 90% of his former ability through doing a full course of Integrated Listening therapy,****, which he took through Janelle Schicker, a certified and highly skilled Speech Language Pathologist. **** She recently finished an ebook about auditory therapy and how it can impact cognitive abilities.

The integrated listening therapy truly can do no harm, though it did make both of my children very tired afterwards. Both of them had tremendous gains from it and I only wished they could have had it years sooner and that my son had never had the LENS therapy at all.

In closing, I would encourage all of you to please speak out about the damage you or someone you love experienced from LENS therapy. Keep others from being harmed by it and the *unqualified* people who claim to be "experienced" practitioners of it. Perhaps someone will put up a website advising others to avoid it and sharing experiences of those harmed by it.

johnnmillerr · 07-05-2011, 10:49 PM

I had done 30 sessions of neurofeeback in my life to settle my rather extreme emotions and anxiety. It went perfectly. I called it magic, with my therapist replying in his usual rational tone, "it's not magic, John."

Then, I moved to Colorado, and I had a different neurofeedback provider. At the time it had been about four months since I last did neurofeedback, and we did alpha-stim for about 30 minutes, and neurofeedback for about around 25. Unfortunately, I came home experiencing one of the worst feelings of my entire life. I got home and wright away went looking for my Xanex. But before the medicine had time to kick in, I had a fairly bad panic attack. I wanted to die. I was constantly moving, knee bopping, twiching, etc. The psychological pain was tremendous and it's causes at the time were unexplainable. It was confusing because I almost always came home from neurofeedback feeling very relaxed and peaceful.

I am thinking the cause was overstimulation of my brain. A very uncomfortable feeling really kicked in towards the end of the alpha-stim training, so it couldn't have been completely neurofeedback, and escalated during the neurofeedback. As of now, the Xanex is helping but still I feel very uncomfortable, "overstimulated," and panicked. Paradoxically however I noticed that the usual effects of neurofeedback retained, such as a lowered fear response I usually felt after "T3-T4."

Both me and my therapist have absolutely no idea why this happened. Do any of you? If so, this would be appreciated. And if it really is overstimulation as I guess, how long does it last???

But anyways, I have the same story, or at least a very similar story to all the people here who posted their adverse reactions to the application of modern therapeutic technologies. It sucks, I know.

lenochs · 03-01-2012, 07:28 PM

My name is Len Ochs. I'm the person who developed the LENS. I continue to develop it and train professionals to use it. The person who used the LENS with you may have been a doctor of some kind, but he didn't do a good job of assessing your sensitivity, or what led to the seizures you had. We also train people to not use a cap -- so I do even have a question about whether you really received the LENS at all, or just something that was called the LENS. In any case you certainly had way too much done to you.

So I apologize to you for what sounds like a really bad experience with someone we trained who should have known better. The other side of the story is that had you come to us for PCS evaluation and treatment we may have only given you one second of treatment, which might have upset you, having come all the way from Washington -- but which might have been much better for the degree of sensitivity and reactivity you show. We probably as well would not have treated you the next day. So each person's problems and characteristics can be quite unique.

In our training of the LENS providers we spend a huge portion of time going over how to assess a client's ability to make good use of the LENS. We discuss which approaches to use, how much, and why. This provider didn't get it. I feel badly for what you went through.

My warmest wishes,

Len Ochs, Ph.D.

Quote:

Originally Posted by lopi

I decided I was going to have LENS Neurofeed back Therapy. I researched and read the books and I really thought I had found my answer everything I read really explained everything I was suffering from.
I have PCS from a Motorcycle accident 4 years ago and have been having sensory problems, sezuires, dry heaves, and not functioning at all have not been able to work, or do dinners, travel everything I used to do.
I received my first treatment last week; I traveled to Vancouver to see a DR. that specilizes in Brain injuries and talked to him several times. I had a brain map on Monday which even that made me feel off, but I just thought it was all the noise in Vancouver (very noisy city) and had my LENS treatment on Tuesday. I really thought that was so simple I did not feel that much and the treatment itself took just a minute it took more time to put the cap and the sensors on than the actually treatment and when it was over we did some deep breathing and a short meditation. How could anything so non invasive do any harm.

I took the train up from Seattle first mistake, but on the way home I had to get off at the first stop I had 2 seizures on the way home and really thought I was not going make it.

So by the time I got home I was so tried I went to bed and I slept for 14 hours I could not wake up. That happens sometimes after a seizure and I had to stay in bed all day.

The next day I had to go to town and I was not gone for more than an hour and I was so overwhelmed I was dry heaving and tried I had to lay down.
The rest of the week I felt like I was having an outer body experience I was so disconnected I was in no condition to drive or go anywhere I tried to talk on the phone but I could not form sentences together just very spacey. By Sunday my tics and twitches were back and I was dry heaving all day. I was restless yet if I tried to get up I thought I was going to fall over, it was like my brain said one thing and my body would not follow.

When I was researching LENS the info I saw had no side effects and I thought it was a lot like homeopathic if it did not work it would just pass.

Not until I goggled adverse reactions and side effects in neurofeedback. They include, but are not limited to, anxiety, agitation, panic attacks, manic-like behavior, headaches, nausea, fatigue, sleep disturbance, anger and irritability, crying and emotional lability, incontinence, enuresis, increase in depression, decline in cognitive functioning, increase in OCD symptoms, increase in somatic symptoms, tics, twitches, seizures, slurred speech, loss of previous symptomatic improvements, and temporary disorientation or dissociation.

Which were almost all my reactions. The problem was that my brain is so sensitive and already in hyper mode 24/7 that the last thing it needs is more simulation.
LENS motto is less is more but for people with processing disorders less is way too much. The way I look at is to check that off my list and carry on. Having PCS for several years I know what works and what does not. Gone are the days that I go through a therapy because that was what I thought was necessary to heal.
Listen to your body and learn from it what it needs and not what other people think you need, and never give up. Everything happens for a reason and even if LENS did not work out for me the knowledge I gained from it was worth it.

My new Motto is no more sensory overload

manincar · 06-17-2012, 12:15 PM

Hi All, I am weighing in in this whole matter because I underwent two of the week long "intensives" offered by Brain State Technologies, and besides the fact that I was never informed of the potential risks involved, the practitioners (who are required to take a mere three week course in order to purchase equipment and lease software aka set up a NF practice), did not stop, slow down, or adjust protocols to my very serious complaints during the process. I would avoid any and all dealings with Brain State Technologies, as they turned out to be the most irresponsible, unethical, and simply dangerous bunch of self proclaimed experts, in a field they should have no business treating people in.

Not only did I begin to have an immediate escalation of anxiety and disorienting experiences, my entire central nervous system was taken for a disaterous and reckless ride through a nightmarish, uncontrolled crash test course. I was told that my experiences were only temporary and would resolve as sessions continued. The chief clinician was not available as he had decided to take that whole week off and attend a political rally !! To this day, some twenty months later, I have seen over a dozen experts in the mental health and neuroscience field, and have had no abatement of PTSD like symptoms, to the tune of over $35,000. My life has been so disrupted that I have been forced to stop working, I am now on medications that barely address the dysfunction, and applying for Social Security Disability.

Basically I approached BST to try to get help with a life long (managable but pesky) case of social anxiety. I was a fully functional human being, ran my own business, raised a family etc. BST made far over reaching claims to treat and cure such issues. I now experience constant anxiety and near panic, insomnia, dissociation, depression and to top it all off BST flatly denied any culpability, dismissed me and refused to extend any form of help in ameliorating my abreactions. I am currently in touch with senior members of the ISNR (international society of neurofeedback and research), and have found very kind and supportive help from them.

Yes I could say that I was naive, and that I should have done more research, that I should have chosen a NF practice with clinicians who had degrees in psychology and or neuroscience, but I chose to trust a slick website and promotional package. What a mistake of a lifetime this has become. BST will not even release records of my treatment proceedures claiming that they are not bound by HIPAA laws. I have filed formal complaints with the FDA, and Dept of Health, as well as Attorney General's offices in two states.

This total CNS dysregulation can be directly traced back to the negligence and misapplication of NF protocols, performed by Brain State Technologies affiliates, operating in an exalted state of overconfidence in their holy grail of a product. Lee Gerdes should be ashamed and publicly reprimanded for the proliferation of countless rogue neurotherapy offices and the pathetic lack of aftercare offered to paying, trusting clients like myself.

Any others similarly harmed are welcome to contact me. Thank you, manincar.

sck1221 · 12-12-2012, 11:53 AM

Manincar... I would like to contact you regarding this experience. We also have had this experience and would like to see what we can do to find help. ** thank you.

ada02 · 02-04-2015, 03:54 AM

Similar experience with Brain State here. Only 1 week has passed since the treatment, but anxiety and insomnia are now out of control. Looking for help/possible actions to restore CNS functions. Please contact me. Thanks

Quote:

Originally Posted by sck1221

Manincar... I would like to contact you regarding this experience. We also have had this experience and would like to see what we can do to find help. ** thank you.

Mark in Idaho · 02-04-2015, 12:56 PM

ada02,

Welcome to NeuroTalk. Sorry to hear of your struggles. As you see, a number of people have had adverse results but I haven't seen anybody comment about successful corrective treatments.

My best to you.

needing help · 12-01-2015, 12:46 AM

Quote:

Originally Posted by Mark in Idaho

ada02,

Welcome to NeuroTalk. Sorry to hear of your struggles. As you see, a number of people have had adverse results but I haven't seen anybody comment about successful corrective treatments.

My best to you.

Please, if someone know some advice or something i can do for a family that feel terrible after 15 session of neurofeedback please tell me. i will be very grateful... People that are in the same situacion please contact with me please. thanks for all, we need to something! sorry about my english jeje

neurodude · 05-21-2015, 08:09 PM

Yes, I absolutely would be happy to connect with you to discuss and learn of possible solutions to help restore normal CNS function. ** thank you.

manincar · 07-13-2015, 07:24 PM

Quote:

Originally Posted by ada02

Similar experience with Brain State here. Only 1 week has passed since the treatment, but anxiety and insomnia are now out of control. Looking for help/possible actions to restore CNS functions. Please contact me. Thanks

Hi ada02, I rarely check in here so apologize for late reply. My two Brain State intensives were back in 2010. I would have to say that the damaging effects have been virtually permanent. I still suffer from insomnia, depression and anxiety. I had mild symptoms prior to BST work but nothing like this. I made formal complaints to the FDA, NIMH, Florida dept of health, Arizona atty gen's office, and contacted senior members of ISNR. All to little avail. I am sorry to report that we are very much on our own in this matter. I contacted over 40 law firms trying to elicit interest in a damage suit against BST. It was too far out of their scope to undertake and very difficult to prove harm. I hope you have found some relief. I pursue quite alternative measures now to correct the dysfunction caused by BST and their software. I also sent letters to Lee Gerdes and was severely shunned by his legal team, he has a firewall of lawyers around him guarding their holy grail of a product. I know of a law firm that has successfully sued Gerdes in Az, and they keep a watch around the country for new cases, hoping that eventually there could be enough for a class action suit. Contact me if you still seek help, not sure what I can offer, but know that you are not alone. Best wishes

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