adverse reactions in neurofeedback

curtz316 · 10-07-2010, 09:47 PM

Quote:

Originally Posted by Mark in Idaho

If you will post the names of the Ph.D and M.D. I will try to research them to see what the study is about. Most researchers have an online presence.

George Rozelle PHD

Jonathan E. Walker MD

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.

anne10 · 02-12-2011, 07:02 AM

Hi Mark,
I'm a new member to the forum, and just read this thread. I had a question on your posting response, specifically on the LENS technologies. Could you get in contact with me by email (my email should be accessible through the members list). Or if you have an email where you can be contacted, I can contact you. Look forward to hearing from you.
Anne

Quote:

Originally Posted by Mark in Idaho

It sounds to me like the "Research" was more an anecdotal investigation by a clinician. If it was research, you would not be told what they are trying to do or if they did it, etc.

True research is done with the patient in the blind (not aware if their treatment is real or a placebo) and better with the technician in the blind. In your case, blind as to which patient is being treated.

Neurofeedback requires your input where you view a screen and attempt to cause the values to increase or decrease. Another term is Volitional neuro-therapy.

Then there is non-volitional neuro-therapy where the patient just sits and the computer generates some effect to the patient. This may be a specific brand such a ROSHI or LENS.

It sounds like you were more of a guinea pig than a research subject. It also sounds like there may have been an inadequate medical history and psychiatric history taken.

You could start by requesting a complete copy of your records from this clinician. I would also want to have a complete copy/explanation of the protocol and treatment systems/equipment/prior research, etc. .

I would not fault you if you talked to an attorney. You need to understand what they were doing.

My best to you.

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

Jpm2292 · 06-15-2012, 03:19 PM

I started neurofeedback bc of anxiety. After doing some research online it seemed like a treatment option that could provide good long lasting results without having to deal with side effects, which is why I discontinued medication. So I decided to give it a try. When I had my first appointment the practitioner told me that I had high beta frequencies, explaining my anxiety. So he proceeded by lowering arousal by training at .1 MHz, while using the cygnet playform. After about 3 sessions I started to feel some progress but by the 5th session I began feeling bad side effects similar to the side effects that I was having with medication. The side effects included muscle fatigue, dizzieness, and my head started to feel numb. When I explained these side effects to my practitioner he said that they were normal side effects that would subside in a few days or so. So we continued with the training. After 2 more sessions the side effects of muscle fatigue, emotional flatness, and head numbness increased. I am a d1 runner and the side effects have effected my running tremendously. My times began to slow down and runs that we're once easy became increasingly more difficult. With great concern about the side effects that I was having I asked my neurofeedback practitioner if he could reverse the treatment. He said he could. In my 8 th session he tried to reverse the treatment, it didn't do much. After exchanging emails my practitioner said that if I stop the treatment the side effects should subside. I stopped for 5 weeks and nothing has changed. My running has gone down the drain due to muscle fatigue and I feel a constant daze from the numbness in my head. After 5 weeks I went back to the practitioner, as he said he could reverse the side effects. We did 3 sessions and all I felt was an increase dizzieness. Without any resilience of the side effects I consulted another practitioner in my area. I explained my situation and the side effects that I was experiencing. She said have a very sensitive central nervous system and that the platform she uses called neuroptimal by zengar is more effective and side effect free. I had a session with her and nothing was acomplished with regards to fixing the side effects. My side effects actually got worse as my feet swelled up that night. Neurofeedback has not only ruined my d1 running career but also my quality of life outside of running . I constantly feel dazed and emotionally flat. I am hoping that over time the side effects will subside and I will be able to run again. To anyone who is thinking about trying neurofeedback I would not recommend it unless you are willing to take a big risk and live with the possible consequences. To the practitioners I think it is very dangerouse to mess with people's brains. Neurofeedback has been the worst decision I have ever made in my life.

eegbiofeedbk · 06-15-2012, 04:47 PM

Hello,
I am a practitioner since 1991 and one of the authors of Standards of Practice in Neurofeedback. *edit* paper published in the Journal of Neurotherapy.

The treatments you received were not well vetted. Neurofeedback (NFB) when properly practiced by a skilled mental health licensed person who is certified rarely has side effects at all and none that are permanent. But anything that can do good can do harm. The problem is we have people who obtain equipment, licensed or not and start practicing without proper training and use techniques that seem simple but are not. If the original practitioner was licensed I urge you to file a complaint with his or her licensing board for failure to meet minimum professional standards. If a member of the International Society for Neurofeedback Research *edit* I urge you to file an ethics complaint. Training at .1 Hz is very difficult to do correctly. It is called slow cortical potential training. It is difficult in part because the sensors themselves may be unstable, or it is difficult to distinguish noise, or sweat or muscle activity from the EEG and thus train the wrong signal and reinforce the improper brainwaves and also it may be difficult to follow the rules of operant conditioning when doing so, though it can be done. Neurofeedback is a complex science - see *edit*

Anxiety is controlled by a network within the brain and not by one or two sites nor frequencies. A proper assessment matched against a validated database should have occurred prior to treatment. Two such databases are in use: Neuroguide and Nxlink. The first came out of NIMH and the Univ of Maryland and the second out of NYU many years ago.

If is CRITICAL to choose the right practitioner with proper training and credentials.There are a group of us who have seen these effects and have learned how to reverse them in most cases. Please feel free to backchannel me at*edit*

Gerald Gluck Ph.D. LMFT
Board Certified Neurofeedback, Senior Fellow

Quote:

Originally Posted by Jpm2292

I started neurofeedback bc of anxiety. After doing some research online it seemed like a treatment option that could provide good long lasting results without having to deal with side effects, which is why I discontinued medication. So I decided to give it a try. When I had my first appointment the practitioner told me that I had high beta frequencies, explaining my anxiety. So he proceeded by lowering arousal by training at .1 MHz, while using the cygnet playform. After about 3 sessions I started to feel some progress but by the 5th session I began feeling bad side effects similar to the side effects that I was having with medication. The side effects included muscle fatigue, dizzieness, and my head started to feel numb. When I explained these side effects to my practitioner he said that they were normal side effects that would subside in a few days or so. So we continued with the training. After 2 more sessions the side effects of muscle fatigue, emotional flatness, and head numbness increased. I am a d1 runner and the side effects have effected my running tremendously. My times began to slow down and runs that we're once easy became increasingly more difficult. With great concern about the side effects that I was having I asked my neurofeedback practitioner if he could reverse the treatment. He said he could. In my 8 th session he tried to reverse the treatment, it didn't do much. After exchanging emails my practitioner said that if I stop the treatment the side effects should subside. I stopped for 5 weeks and nothing has changed. My running has gone down the drain due to muscle fatigue and I feel a constant daze from the numbness in my head. After 5 weeks I went back to the practitioner, as he said he could reverse the side effects. We did 3 sessions and all I felt was an increase dizzieness. Without any resilience of the side effects I consulted another practitioner in my area. I explained my situation and the side effects that I was experiencing. She said have a very sensitive central nervous system and that the platform she uses called neuroptimal by zengar is more effective and side effect free. I had a session with her and nothing was acomplished with regards to fixing the side effects. My side effects actually got worse as my feet swelled up that night. Neurofeedback has not only ruined my d1 running career but also my quality of life outside of running . I constantly feel dazed and emotionally flat. I am hoping that over time the side effects will subside and I will be able to run again. To anyone who is thinking about trying neurofeedback I would not recommend it unless you are willing to take a big risk and live with the possible consequences. To the practitioners I think it is very dangerouse to mess with people's brains. Neurofeedback has been the worst decision I have ever made in my life.

Mark in Idaho · 06-15-2012, 05:09 PM

Quote:

I started neurofeedback because of anxiety. After doing some research online it seemed like a treatment option that could provide good long lasting results without having to deal with side effects, which is why I discontinued medication. So I decided to give it a try.

When I had my first appointment the practitioner told me that I had high beta frequencies, explaining my anxiety. So he proceeded by lowering arousal by training at .1 MHz, while using the cygnet playform. After about 3 sessions I started to feel some progress but by the 5th session I began feeling bad side effects similar to the side effects that I was having with medication. The side effects included muscle fatigue, dizzieness, and my head started to feel numb.

When I explained these side effects to my practitioner he said that they were normal side effects that would subside in a few days or so. So we continued with the training. After 2 more sessions the side effects of muscle fatigue, emotional flatness, and head numbness increased. I am a d1 runner and the side effects have effected my running tremendously. My times began to slow down and runs that were once easy became increasingly more difficult.

With great concern about the side effects that I was having I asked my neurofeedback practitioner if he could reverse the treatment. He said he could. In my 8 th session he tried to reverse the treatment, it didn't do much. After exchanging emails my practitioner said that if I stop the treatment the side effects should subside. I stopped for 5 weeks and nothing has changed. My running has gone down the drain due to muscle fatigue and I feel a constant daze from the numbness in my head.

After 5 weeks I went back to the practitioner, as he said he could reverse the side effects. We did 3 sessions and all I felt was an increase dizziness.

Without any resilience of the side effects I consulted another practitioner in my area. I explained my situation and the side effects that I was experiencing. She said I have a very sensitive central nervous system and that the platform she uses called neuroptimal by zengar is more effective and side effect free.

I had a session with her and nothing was accomplished with regards to fixing the side effects. My side effects actually got worse as my feet swelled up that night. Neurofeedback has not only ruined my d1 running career but also my quality of life outside of running . I constantly feel dazed and emotionally flat. I am hoping that over time the side effects will subside and I will be able to run again.

To anyone who is thinking about trying neurofeedback I would not recommend it unless you are willing to take a big risk and live with the possible consequences. To the practitioners I think it is very dangerous to mess with people's brains. Neurofeedback has been the worst decision I have ever made in my life.

Reposted by Mark in Idaho.

Jpm,

You did not describe whether you did volitional neurofeedback or non-volitional neurotherapy. Volitional means you use your thought to change your brain waveforms. Non-volitional means the computer inputs electromagnetic energy into your brain to try to change the brain waveforms.

Volitional has a very safe history. Non-volitional has a very poor history. You should file a report of an adverse event with the FDA if you are in the US. They need to hear about adverse events of these systems that claim to be FDA exempt.

My best to you.

Mark in Idaho · 06-15-2012, 10:06 PM

I agree with Gerald Gluck, Ph.D., LMFT that it is important to properly vet any professional before undergoing therapy.

The problem is there is very inadequate information made available by most professionals.

For example, Google Gerald Gluck, Ph.D., LMTF and try to find a thorough CV. There is paragraphs of his personal claims and work hiistory and where he studied and/or taught, but there are scant references to his training. What is his Ph.D in? What was his Ph.D. Thesis? What specific neurofeedback training has he had and which systems does he use?

Other than BCIA-EEG, his CV shows nothing to compare him to any other BCIA-EEG practitioner. The BCIA-EEG certification does notestablish high credentials. I have found many BCIA-EEG certified practitioners who have no more than a bachelors degree. Some with a Masters in counseling or Marriage and Family Therapy, some a Ed.D. etc.

How is someone supposed to vet a practitioner? Plus, with the volitional and non-volitional neurotherapies both claiming to be neurofeedback, the lines become very blurred.

Please help us understand.

eegbiofeedbk · 06-16-2012, 01:08 PM

Hi,
I am so glad to see George and Len on this list. They are both superb clinicians and decent human beings.

*edit*

I do not have anything to hide but I do not think it is appropriate to go into all of my training here but would be happy to share it back channel. Suffice it to say that my teachers were Joel Lubar, Ph.D., Steve Fahrion (Menningers), Steve Stockdale, Ph.D., Margaret Ayers, Eugene Peniston,Ph.D. RObert Thatcher, Ph.D. and I do not endorse Othmer style training of ILF (not to be confused with ILS which is great) and have testified in court in civil and criminal related matters to what we are discussing here.

So lets look at a few simple steps.

1. If the presenting problem is anxiety one should start with a licensed mental health practitioner.

2. BCIA is a minimum requirement, barely.

3. One can inquire as to software and hardware used and the number of clients seen over how many years.

4. Ask for the names of their trainers or teachers and call them.

5. Search the ISNR and BCIA websites and AAPB for research on your particular disorder and the Applied Neuroscience or Neuroguide website which has a wealth of information. AAPB has a monograph out on evidence based practice in neurofeedback and it is organized alphabetically by symptom or disorder. Read your portion and see if your practitioner will be doing that. He may not and that may be OK but he has to have a good rationale based on some science for doing what he is doing.

6. MOST IMPORTANT inquire as to the science behind the neurofeedback that is being practiced and ask for some of the science that you can access on the web and have it explained to you. This is part of informed consent. See also pubmed.

7. Cory Hammond has published a nice up to date paper on What Is Neurofeedback and I believe it is available free on the ISNR site somewhere.

Len is a real gentleman and an honest man and when asked he will tell you he does not know why LENS works and last we spoke he told me it is experimental.

You can consult Leslie Sherlin's article also on the ISNR website about operant conditioning and neurofeedback which is the accepted model in training and ask the practitioner how his or her training conforms to the laws of operant conditioning.

Look for proof of concept of the technique used and ask about the training in that technique and who supervised the person. FOr example, I practice LORETA NFB extensively, but in my consent form I list the proof of concept research but say it is still experimental despite it being used by the US Army and Marines and Airforce for returning vets with head injury and PTSD (an anxiety disorder).

I hope this helps.

Jerry Gluck

Quote:

Originally Posted by Mark in Idaho

I agree with Gerald Gluck, Ph.D., LMFT that it is important to properly vet any professional before undergoing therapy.

The problem is there is very inadequate information made available by most professionals.

For example, Google Gerald Gluck, Ph.D., LMTF and try to find a thorough CV. There is paragraphs of his personal claims and work hiistory and where he studied and/or taught, but there are scant references to his training. What is his Ph.D in? What was his Ph.D. Thesis? What specific neurofeedback training has he had and which systems does he use?

Other than BCIA-EEG, his CV shows nothing to compare him to any other BCIA-EEG practitioner. The BCIA-EEG certification does notestablish high credentials. I have found many BCIA-EEG certified practitioners who have no more than a bachelors degree. Some with a Masters in counseling or Marriage and Family Therapy, some a Ed.D. etc.

How is someone supposed to vet a practitioner? Plus, with the volitional and non-volitional neurotherapies both claiming to be neurofeedback, the lines become very blurred.

Please help us understand.

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