adverse reactions in neurofeedback
 

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

So as not to discourage readers from trying the LENS therapy to rehabilitate their brains, I would like to address this posting. I'm not a professional, so take this with a grain of salt and please consult a professional before attempting any neurofeedback protocl.

The reaction that Lopi had to the LENS is actually a very common reaction to have after the first treatment for people with brain injuries. A couple of things factor into this reaction. First, the first couple of sessions are meant to be exploratory sessions to ascertain the correct frequency and site to train. This is not different than when a doctor puts you on a new medication and it takes a while to find the correct dosage for your body. Second, injured brains can be very disorganized and this can result in the brain having to go through a reorganization process that can be quite uncomfortable for the client. This happened to me when I first began doing traditional neurofeedback. My brain had become so stuck in the disregulated patterns that at first it didn't want to budge at all and this would send me into a dizzy of symptoms after I did a session. Eventually though, it did begin become more flexible and I began to get benefit out of the sessions. Third, although I highly doubt this was the case, the practitioner may not have had enough experience or training to be able to accurately train someone with a head injury. I've said all along that neurofeedback is a powerful tool to use in rehabilitating head injuries, however, it is only as powerful as the practitioner using it. That is why it is important to have someone with experience with head injuries treat you.

LENS therpay ?
 

Hi,
I don't understand the reference to LENS therapy? I was looking into the qEEG therapy of Dr. Walker in TX with the neuro-feedback are they the same?

Linda (Mom) in CT

Hi Linda,

They are and aren't the same. They are both forms of biofeedback. With Dr. Walkers method, it is more like traditional neurofeedback where your daughter will try and train down or train up different frequency bands depending on what her QEEG shows. It is QEEG guided because she will most likely have QEEG's done every 4 weeks to ascertain the direction of the neurofeedback. For brain injuries, I normally wouldn't recommend doing this kind of neurofeedback; however, Dr. Walker is one of the best in the country so he would be the exception.

With the LENS, it is still a form of biofeedback because the computer is reading the clients brainwaves to ascertain where the dominant frequency is. Once it ascertains this, it sends a miniscule electromagnetic wave no stronger then what a digital watch puts out into the clients brain that slightly offsets the dominant frequency and flattens the EEG, which is a very good thing. LENS practitioners are harder to find because the equipment and training is very expensive. However, as I mentioned before, this is probably the best method to rehabbing brain injuries because it requires no effort from the client, which can be a problem for brain injured clients. The LENS is also considered an advanced form of neurofeedback and the field is probably moving in this direction.

Another form of neurofeedback that has been effective for brain injuries is called Z score neurofeedback. This exclusively trains coherence and phase relationship issues, which is also a major problem with people who have post concussive syndrome. The type of injury is most likely due to diffuse axonal injury because the brain is not communicating with itself very well, and Z score training helps to train this out for better functioning.


Please keep asking more questions if you have them. If anyone else has experience with this kind of therapy, please chime in.
Also, I would suggest calling Dr. Walker and Len Ochs and ask them your questions. They are both very nice people who would be willing to talk with you. I believe you already have Dr. Walker's URL, so here is Len Ochs URL: http://www.ochslabs.com/.

You may also want to talk with your neurologist or and endocrinologist about using hormone therapy to treat her. I'm not sure if they can with her young age, but it might be worth a discussion.

I have the same issue as Lopi
 

Here is a letter I sent to someone a little while back reaching out for help:

"I participated in Neurofeedback treatments for TBI research around early February. I had a strange reaction and haven't felt the same since (it has been 4 months). I ended up testing negative for TBI by the way. The protocol was to start by the practitioner reducing delta waves on the right side and then rewarding the left or something. I told him that I was panicking for some reason at the end of the treatment and all the gauges on the computer where maxed out. I also told him prior to the second session that I was anxious since the first the day before. I only did a total of 2 treatments. He mentioned things were changing up there and it would subside. He trained me for 5-10 minutes too long the second procedure (he openly admitted later on). After the treatment, for the next 4 days or so, I had the worst anxiety attacks of my life (I think they were "partial seizure" attacks). It was off and on constantly with all of the symptoms explained above and many more intensified by 10 fold. It was like a roller coaster ride; calming myself down then off into a meltdown seconds later. Anything from looking at a certain shade of light to just about anything else would set it off instantly. I have been also having head pains/sensations in the area where I was trained on the left back part of my head, going down into the neck area. I also have been having problems with my eyes (floaters, flashes, double vision in left eye sometimes, and more), anxiety, seeing images or faces from shapes in things (example: tiled wall/floor & like looking at the clouds enhanced by 20) I had a CAT scan and a MRI both resulting normal (nothing found except a squiggly vein or something, “an anomaly”). I have been taking Lorazepam (anti-anxiety med w/ anti-seizure traits) for the last 2 months, prescribed by the hospital first and now by my Neurologist who is totally confused. When I went to the hospital my blood pressure was high and I was very nervous/anxious with a lot of pressure in the back of my head. My left eye was dilated along with everything else and that’s why I went. I haven’t taken meds for anxiety (or anything really ever) for about 7 years or more and I never planned on taking them ever again. I really had no choice, it was too much to handle. I am desperate for help and saw that you were experienced in psychology along with Neurofeedback. Can you please give me some guidance on what I should do or who can help me?"

I never did get a response back from this specialist...

Well, it has been almost a year now (3 brain scans later (MRI, CT, then MRA)) and they just found an aneurysm in left rear part of my brain. That's almost exactly where the device was placed. I went to a neurosurgeon and he told me that aneurysms don't produce any symptoms. That can't be right because I have pain/strain everyday in the area that they said the aneurysm is. This treatment completely flipped my life upside down. I know, without any doubt, that this treatment caused an aneurysm, increased my anxiety, permanently damaged my eyes, made my existing symptoms worse, made my brain less optimal than before, and put me into a depression. The Neurofeedback technician denies any of it. If Neurofeedback didn't do it, than the reaction to the Neurofeedback did it (if that makes sense). Not only has this ruined my quality of life in so many ways now and for the future, it is costing me big bucks. I lost my insurance because I was on Cobra and then found someone to take me after being denied twice, but at a ridiculous cost. I am paying over $400/month for health insurance because I have a preexisting condition now. I had a few reported symptoms before, but I was paying about $120/month. I am only 27 by the way. I wake up everyday, tormented from this event, because the pain in my head every morning reminds me. My mental health is degrading and I wish someone would just put a bullet in my head sometimes. I can't even get help with my doctor bills. I would consider sometime of lawsuit, but I called around it is too complicated in so many words. My hands are up in the air. Any advice is much appreciated. Not to say Lopi's last words in his story didn't inspire me.

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.

I agree
 

He should have definitely done a pre-qualifying with something of such adverse affects and a whole lot more. If I would have known the risk I was taking, of being more vulnerable with my head trauma, I probably wouldn't have done it. I mentioned before the treatment, while preparing myself and doing research about Neurofeedback, that I saw something about seizures while investigating. He asked me if I ever had a seizure, I said "no" because I haven't, then he told me not to worry and it has never happened in his 30 years experience. I tried to get my full records and he won't release them to me. I am running out of energy trying to deal with this crap. It's like every doctor I talk to just can't comprehend this. Half of them look at me like I am out of my mind. The aneurysm is new though.. You would think that anybody that hears this story would have more compassion and understanding. Especially, a neurologist that knows how complicated the brain is. I don't know, maybe that look on their face is their own confusion that I am mistaking for a lack of confidence in me?? I dunno.. Thanks for your fast response Mark in Idaho!!

curtz,

Was this guy a neurologist M.D.? He sure does not sound like it. He is required to provide you a copy of your medical records. It is a requirement of HIPAA.

I would suggest contacting your state/provincial medical examiners board.

What letters does he use behind his name? M.D. Ph.D. LCSW, PsyD, MS, etc. and what board affiliations does he list?

Where in the world are you? USA, Canada, State or Province

In your future posts, it will help many of us read them if you use a paragraph spacing every 5 or 6 lines. I and many others struggle to follow from the end of one line to the start of the next if there are too many lines in a paragraph.

Yesterday, I pasted your post into MSWord and added paragraph spaces so I could read it.

He is a PHD of EEG I am guessing. He is not a Neurologist, but the man

heading the study is. He wouldn't let me talk with him. I am in FL.

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

adverse reactions in neurofeedback
 

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.

Could we get in contact - had a question on your posting
 

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

same story
 

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.

Reaction to the LENS
 

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.

Adverse side effects from neurofeedback
 

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.

Neurofeedback side effects
 

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

Reposted for readability.
 

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.

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.

How To Vet a Practitioner
 

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

I've been examined by Joan Ordmundy once. Three times over 5 years by F LaMarr Heyrend, M.D. with the database he developed with Ronald Barrs, Ph.D. and C Dean Simpson .

I have followed Robert Thatcher for years.

I find Len Ochs to be less than open about his research and further struggle with his promotion and use of the term neurofeedback. His system is neurotherapy. He has an FDA exemption but it does not appear he puts an effort into reporting adverse events. I find this troubling. He is very loose with his policing of customers and their claims and promotions.

I have talked with the ROSHI developer and was unimpressed.

I have discussed NFB with Cory Hammond and find some of his claims to be a bit exaggerated. He also does not proactively differentiate volitional vs non-volitional. I have only seen his recent articles referencing LENS.

The neurotherapy community needs to be more proactive with the use of terminology (volitional vs non-volitional, LENS, ROSHI). I have read the newsletters of the associations trying to piggyback non-volitional neurotherapy onto historical biofeedback and volitional neurofeedback.

Every time neurofeedback or neurotherapy is mentioned, there are too many questions left unanswered.

BCIA and ISNR have a big hill to climb to clear up the muck.

With consistent definitions and terms, the client/patient community will be better able to vet prospective practitioners.

Maybe you can be part of the solution to this mess.

Until then, adverse events will go unreported and inept practitioners will continue to fleece and injure patients.

abreactions to neurofeedback
 

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.

neg effects of neurofeedback
 

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.

Nuerofeedback
 

I was reading some of the posts on here. I am so sorry that neurofeedback didn't work for some of you. As for me, it was a huge blessing and life changer for me. I was in a car accident and suffered a brain injury. It was a very difficult time as I was trying to function as a "new" person.
Among other things, I suffered from migraines almost everyday, I no longer could be in crowded areas, I became agitated very easily, and I wasn't able to make decisions on my own without a huge anxiety attack. After seeing many doctors with no avail, I started taking more of a natural approach.
I was on high doses of Omega 3's and as long as a was very diligent in taking them, along with a couple other natural supplements I was able to function much better. However, if I missed 1 day, I was a mess and it took me a few days to "stabilize" and feel "normal" again.

I was introduced to EEG about 4 years ago. It took me about 5 months before I was able to do a full session because my brain had been so overworked and sensitive that I could not handle the protocols. We listened to my body and took babysteps starting out with just 5 minutes. We also stopped working on the cognitive side of the brain and focused on the subconscious part of the brain first.

I was only able to handle 5 minutes of that as well. I experienced a lot of the symptoms that have been mentioned on the board also, but they slowly subsided, which I believe was because my brain was becoming "healthier" and creating new pathways. I did a year of vigorous neurofeedback and I can now do simple tasks with no anxiety, I can be in a crowd for a limit time without having a panic attack, and I am on a normal dose of omega 3's for health purposes and not so that I can function and get through the day. It was a lot of hard work and time, but I have my life back for the first time since 2000. The BEST investment I made.

Sariah,

Welcome to NeuroTalk. I am glad to hear you are doing so well.

What exercises did you do with your neurofeedback ?
Was there a 'brand name' to the system or therapy ?

btw, You should ask a moderator to help you change your screen name to something more private. Maybe just Sariah or SariahC

Read the Vitamins thread in the stickies at the top. B vitamins and D3 are also very helpful to your brain. A B-50 Complex, a B-12 (1000 to 2500 mcgs) and D3 is a good start.

My best to you.

I've been reviewing comments. Have some questions but need to be private. Can some one email me for further discussion?
Thanks for understanding.

Neurofeedback results
 

I recently began neurofeedback for PCS. I've had 20 sessions and can already tell there has been improvement. Here are some very important things to know about neurofeedback.

1. Know your practitioner. Experience is critical to effectiveness. The more the better. Confirm that your practitioner is licensed and participates in ongoing education.

2. Who is actually working with you? Many pracitioners hire techs to do the neurofeedback. In other words, you may think you're going to be seeing the named guy, but in fact, the person actually treating you is a hired "tech" working under the "name practitioner." This includes Dr. Walker in Dallas, TX. You MUST ask who will actually be working with you.

2. The most advanced neurofeedback system is called LORETA. This system is able to do things that older, less sophisticated systems are simply incapable of doing. For example, the LORETA system is constantly doing a qEEG during neurofeedback sessions. It evaluates the entire brain, and can work many parts of the brain during every session. It can treat areas of the brain that the older systems cannot, e.g., deeper areas of the brain. (Compare to older systems, which are limited in the number of areas that can be addressed and do not allow the practitioner to concurrently monitor overall progress).

3. Unfortunately, there are only 50 or so LORETA practitioners in the U.S.

4. My suggestion is to see the best practitioner possible, even if it means traveling far away. If you think it's too expensive to travel, then think again. Nothing is more expensive than paying for something that doesn't work! I saw 3 local practitioners before traveling 1400 miles to get what I feel is the best treatment. One of them (a respected man who has been practicing for a very long time - not Dr. Walker) told me that I "have a good brain." The problem is that the old system he uses couldn't detect some of the problems. AND he farms out his work to techs because he's burned out.

5. Neurofeedback is real. It can do things that nothing else can. It is useful for a variety of issues, including depression, anxiety, seizures, migraines, autism, head injuries, autoimmune diseases, ADHD, and more.

Frank Duffy M.D., Professor and Pediatric Neurologist at Harvard Medical School wrote about Neurofeedback: "In my opinion, if any medication had demonstrated such a wide spectrum of efficacy it would be universally accepted and widely used (p.v) It is a field to be taken seriously by all" (Clinical EEG and Neuroscience, January, 2000.

Miss Understood,

Welcome to NeuroTalk. You have found a good place.

You sound like an advertisement for the neurofeedback system you used.

What practitioner do you see ?

You make a lot of interesting comments. I believe there are many techs who do a fabulous job. The practitioner should be setting the targets for the tech to focus on. The qEEG tech who did my qEEG was excellent. He read the waveforms and pointed out some of the areas for the practitioner (MD) to analyze.

So, in my opinion, it is the analyzing of the waveforms to find the areas needing attention that is important. If a tech can help the client achieve the improvements, that is fine with me.

The LORETA system is just an imaging system that can be used for neurofeedback or other diagnostics just like a qEEG.

I am surprised that after 20 sessions you are only starting to see an improvement. Do you see the improvement or is the improvement based on the LORETA readings ? If you see the improvements, what improvements are you seeing ? What are you most problematic symptoms ?

What kind of treatments/efforts are you directed to as you undergo a session ? cognitive focus, relaxation, ????

I hope you improvement continues. Please keep us informed about your progress.

My best to you.

Its starting to make sense, thank all of you for sharing!
 

:grouphug:


Thank you all for sharing your stories, experience and advice.

All these years I wasn't sure what exactly was going on with me but my symptoms have included severe depression, anxiety, mental breakdowns, and general sensitivity to everything. These symptoms haven't been any easier to cope with as life goes on and the more I reflected on the chain of events that have lead to how I've been feeling. I realize now more than ever that my symptoms all started with my introduction to Brain State Technologies six years ago.

After the first treatment I experienced anxiety, depression, incapacity to handle much stress, overwhelming guilt for the mildest of things, which previously would have just rolled off my back, and being a mere shadow of my former self not only adds insult to injury but has drove me here to seek understanding and help.

I was referred to Brain State Tech approx 6 years ago for ADD and issues with memory and focus. I had gotten by in life pretty well overall I guess, much like all of you had previously I'm sure. But like all of you I wanted to do better for myself without becoming dependant on Medication or anything for that matter. During my search for such a solution was when I was referred to Brain State Technologies. I was also at the time working on a start-up in the wellness space and when I came across BST thought to myself if this works I need to participate in this "advancement" in health, wellness, and humanity.

So of course like most of you I decided to get fully informed prior to attempting this treatment, so I looked at all the available testimonials, read the Lee Gerdes book and watched all the videos before deciding to call a practitioner from Northern California.

It just so happened that the practitioner I contacted had traveled to Southern California where I was living at the time to treat a friend of hers. (I dont know if I would have actually tried the treatment at all had the practitioner not been in the city I grew up in Thousand Oaks the day I called her. I found it very synchronistic)

So naturally we got together the very next day before she headed back North and she offered to give me a sample treatment.. I did the first treatment in approx an hour and felt fine but only A week later I had a meltdown by way of a major anxiety attack which felt as if I was gonna die and an overwhelming feeling or paranoia that I couldn't be alone.. This was the first time this had ever happened to me and This totally freaked me out as I'm a very stable and level headed individual, I even Managed a home for Developmentally Disabled Adults and help my clients through schizophrenic episodes regularly without issue.

So I called the practitioner told her about what happened and she said naturally that I needed more treatments as one treatment wasn't enough. One treatment did seem however to be enough to open pandora's box and I ventured to Nor Cal to receive the recommended additional treatments. 8, 1 and a half hour intensive back to back treatments two per day which left me exhausted by days end and extremely sensitive to stimuli ever since. I've been through a series of very unpleasant experiences loosing my business girlfriend, friends and peace of mind. I feel at time suicidal and apathetic to life. I feel like I have PTSD and cant get over it. Simple pleasures are gone and my lighthearted outlook on life has changed dramatically.

Not sure exactly what to do but seeing as how its been 6 years now and nothing really seems to work to reverse the effects maybe I should consider revisiting neurofeedback of some form? Maybe they've worked out the bugs and me and the many other neurofeedback pioneers or test subjects have contributed to the finding of better technologies and protocols for its use. Because of this post I will be looking into Lens, Loreta and learning more about Brain State and its developments, thank you.

Things that help with my symptoms and have helped me cope over the years are - Brainwave Entrainment, L- theanine, Gaba, alcohol, Xanax and Sex. With these I can achieve temporary relief.

Things that don't help are Marijuana, Caffeine, bad attitudes, and mean people. I hope this helps someone out there. :grouphug:

Help with adverse symptoms
 

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

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.

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.

I could not really find much on scholar about this therapy and evidently you don't even need a medical degree to practice it so it's hard for me to trust.

Something related which has been well studied is Transcranial magnetic stimulation, they were trialling it for depression here in Australia and last I heard there was insufficient evidence for its use at least in depression.

*admin edit*

belated reply
 

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

Did you file an adverse event report with the FDA ? Gerdes claims his system is GRAS, Generally Regarded as Safe. His practitioners are the worst because they promote BST for conditions other than relaxation needs. He gets FDA exempt status by claiming the system is harmless.

No I did not file an adverse event report with the FDA. The whole ordeal of filing complaints was so cumbersome that I eventually let it go. No one seemed to care or even be concerned. As for BST staff, they seemed to be be controlled to the degree of cult members and coached on deflecting any criticism or complaint. BST HQ colluded with their affiliate member in burying my case and avoiding all legal and ethical responsibilities. Quite amazing for a group claiming to be health advocates. When asked for copies of my medical records under HIPAA laws they simply delayed and delayed until the statute of limitations period (two years) had passed. I intended to file complaint with HIPAA but by that time I was exhausted and quit.

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

Hello and welcome to the NeuroTalk Support Groups.

Can you tell us more about yourself or your family member who has had the adverse reaction to neurofeedback as that way the members of the forum may be able to offer more support and information.

Needing help,

There are many different types of NeuroFeedback. Do you know what kind your brother had ? LENS, ROSHI, or any other the other types.

Why was he treated with NeuroFeedback ? What symptoms was being treated ?