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Old 10-12-2009, 08:33 AM
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Brain Neurofeedback: Bad Experience


I went for neurofeedback training, I did 36 sessions and it made me worse then I have ever been. They claim there is no side effects. That is an outrageous lie. I did the training week to week. My clinician was trying several different things. It felt like I was an experiment. This is definitely not an exact science. My whole head gets this numbness feeling now. I am worse then ever with impulse control problems. There is times my head gets numb and I can't even think. I am warning people. If you have any brain symptoms or headaches, do not do neurofeedback training. I went to a clinician that was highly recommended in my area for the training. I regret doing it now. I want my brain back the way it was. I should have never let her experiment with me. I am now going to see a lawyer over what she did to me. Playing with your brainwaves is very dangerous. Don't take it lightly. Neurofeedback training has left me with impulse control problems and numbness all over my head where I can't even think. And there are side effects. These forums claim that there is no side effects, that is bullcrap.
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Old 10-12-2009, 11:09 AM
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Hi compcoll, I am sorry to meet you under such trying circumstances. This forum was made out of love by Bernard for his wife Stacy.

It is not the purpose of this forum or any Epilepsy Support group to say that something is a cureall. We talk about things that are related to epilepsy.

Some things here work for some and not for others. I am glad you got an attorney. It sounds like she does not know what she is doing.

The EEG, MRI, CTscan and V EEG all work on the brain waves. Do they give you bad side effects? If they do, then your brain cannot handle any brain wave test besides Neurofeedback.

Some people use diets and other things as alternatives to medicines. Some medicines mess me up real bad. For instance, my first medicine at the age of 6 was Dilantin. That is still a very well known and taken medicine. I almost lost my life to Steven's Johnson Syndrome over it. We are having a discussion about it in the forum. You can look it up in the internet and find the best discussion from the Mayo Clinic. PhylisJenniferJohnson posted it here in the forum and I have made a lot of quotes from the Mayo Clinic. I am now 66 years old. I was diagnosed with it again 2 years ago. I was told it was due to Tegretol XR. Since then, it has been going into remission and coming back again. It can kill. It may have come back from the time I was 6 years old.

My sister has epilepsy, as well. Her epilepsy went into remission at the age of 17. It came back in her 60's. There is no such thing as outgrowing it. It can go into remission.

I have never read anyware in this forum that there are no side effects. Give me a Private Message telling me where it says that. You can forward it to me. Ruth
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Old 10-12-2009, 03:11 PM
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Originally Posted by compcoll4000 View Post:
I went for neurofeedback training, I did 36 sessions and it made me worse then I have ever been. They claim there is no side effects. That is an outrageous lie. I did the training week to week. My clinician was trying several different things. It felt like I was an experiment. This is definitely not an exact science. My whole head gets this numbness feeling now. I am worse then ever with impulse control problems. There is times my head gets numb and I can't even think. I am warning people. If you have any brain symptoms or headaches, do not do neurofeedback training. I went to a clinician that was highly recommended in my area for the training. I regret doing it now. I want my brain back the way it was. I should have never let her experiment with me. I am now going to see a lawyer over what she did to me. Playing with your brainwaves is very dangerous. Don't take it lightly. Neurofeedback training has left me with impulse control problems and numbness all over my head where I can't even think. And there are side effects. These forums claim that there is no side effects, that is bullcrap.


Hate to burst your bubble, sweetie but you better do some in-depth investigations before you make such wild claims.

Quote :
How safe is neurofeedback?


An important thing to understand about neurofeedback is that it does nothing directly to the brain except provide information about brain behavior. The EEG electrodes that are placed on the scalp take in information about brainwaves...they do nothing to the head. Whatever happens during neurofeedback happens because the brain does it to itself. As a result, neurofeedback is a very safe procedure.



Side Effects
The brain doesn't tend to run off wildly by itself, but there can be temporary side effects from brainwave training. The process of training includes finding the most satisfactory way for an individual's brain to work...we are true individuals in that way also. So, a little trial and error occurs, but it is a normal part of the process.

Any unwanted side effects, such as feeling "wound up" or fatigued can be easily reversed by another feedback session. Providing a good medical and psychological history to your neurotherapist can help select the neurofeedback work to be performed that is likely to be the "best fit" for you right from the beginning.


source http://neurofeedbacktoday.com/safe.htm
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Old 10-12-2009, 07:53 PM
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Hi compcoll4000, Be sure and look up that link at the bottom of Birdbomb's message. I looked you up at your site and you do not have visitor messages or Private messages. How can we get in touch with you? I hope you do research on neurofeedback. Birdbomd gave you the correct information.

I have studied it myself.
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Old 10-13-2009, 04:46 AM
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Originally Posted by compcoll4000 View Post:
I went for neurofeedback training, I did 36 sessions and it made me worse then I have ever been.


Sorry to hear that. What type of neurofeedback system (ie. machine) did you use? What type of training (SMR, QEEG guided, LENS, etc.) did you do?

When Stacy started out on a Neurocare Pro system (SMR training), it took a long time to get her brain normalized. Her brain wave patterns did not respond in the typical manner the clinician was expecting and she had to do some experimentation to get it right. It took about 60 sessions to get her where she needed to be.

Originally Posted by compcoll4000 View Post:
They claim there is no side effects. That is an outrageous lie.
No, you misunderstood:
Quote :
Fortunately, adverse reactions to biofeedback training are overall rare, and when they occur they are relatively transient or readily dealt with by competent practitioners (Hammond, 2001; Schwartz & Schwartz, 1995).
http://www.aapb.org/i4a/pages/index.cfm?pageid=3531

It is possible for adverse reactions to occur, but a competent practitioner should be able to adjust the protocol and correct them.

Would you mind answering the questions posted here so we might get a better perspective on your experience?
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New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

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Old 10-13-2009, 08:55 AM
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Originally Posted by Bernard View Post:



It is possible for adverse reactions to occur, but a competent practitioner should be able to adjust the protocol and correct them.
Maybe this is the problem: finding someone who is competent to do the neurofeedback.
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Old 10-16-2009, 06:08 AM
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First of all when you and your doctor start nerofeedback your brain is mapped using computer tecnology to see where your problems come from. Im pretty sure that to get the same kind of care you would have to travel to California. I can honestly say after 11 years of treatments that Nerofeedback is the best with no bad sideeffects. Research Berry Sterman and nerofeedback
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Old 10-16-2009, 08:41 AM
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Hi compcoll,

You are new here. When Bernard puts something in blue, the word here is what you press on. That way you can answer the questions.
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Old 10-17-2009, 12:15 PM
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Hi compcoll, you never said what type of epilepsy you have. What type or types of epilepsy do you have?

Why did you go for neurofeedback training? Was it for something else, besides epilepsy?

I would like some feedback from you. You have not answered any of our thinking since you started this thread.

Last edited by Ruth; 10-17-2009 at 12:18 PM.
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Old 10-17-2009, 05:08 PM
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Im not sure if your asking me anything that I havent told yous. If thats the case ask away! I didnt join this forum for any other reason than to share my exoerince of 30+ years of having epilepsy then the gift of seizurefreedom. RULES are for people who want to be boss. The only rule I care about is to LOVE others. Then your spirit lives on.
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Old 10-17-2009, 05:20 PM
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Mike, I think you misunderstood me. I was wondering why compoll4000 has not joined back in on the conversatiion.

I apologize if I asked the question wrong.
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Old 10-18-2009, 06:51 AM
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Sorry, Im here because I really care! misunderstandings happern, then we move on. If I can help one other person not go through all the seizures Ive had, then my life of epilepsy will have meaning. Nerofeedback is the future of seizure control! I speak from years of experince and just want to help.
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Old 10-18-2009, 12:33 PM
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Hi Mike, I am all for Neurofeedback. I joined in this conversation because I know compoll is wrong. It is not for everybody. Just like medicines are not for everyone. Diets work better for others.

I have had epilepsy for 60 years. My first seizure was an absence seizure. I was put on medicine right away. I am very allergic to Dilantin. I should not have been put on medicine right away.I also just want to help others. I have had 2 bouts with status epilepticus.

If neurofeedback had been around then, I would have been on that, hopefully. The closest Neurofeedback clinic is a one hour drive away from where I live. There are 2 clinics. I do not drive and my insurance will not pay for it. We cannot afford to pay for it ourselves. Otherwise, I would be on neurofeedback. You are helping Mike!! Keep up the posting.
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Old 11-21-2009, 08:47 PM
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I have done neurofeedback and regretted it.


Neurofeedback is very dangerous in my opinion. I have had sever very bad side effects from neurofeedback training. I have gone for six months and am worse then ever. It is as if you are an experiment to the clinician. I called several places and the clinician I went to was highly recommended by several places. She is known as an authority on neurofeedback. The assumption that a protocol worked for some people and should work for others is nonsense. Don't tell me that I went to someone that didn't know what they were doing. All these places act like they are the ones that will definitely be able to help you. I believe it is truly dangerous for people that have bipolar disorder especially. It triggered extreme impulsivity and negativity for me. I was starting to see a little progress after 20 sessions and felt like this one week helped me. Well then my clinician felt like she should try the Lens on me. It was something that I would live to regret. It triggered extreme impulsiveness, anger, suicidal ideation, as well as hostility toward others. And to the person that said that neurofeedback doesn't do anything to the brain. I want to say that person is clueless. It does alter brainwaves which can be a dangerous thing. I mean think about it. If it can alter brainwaves to help problems the brain is having then it can also cause problems and trigger problems the brain is having. I am talking to a lawyer now about my experience after losing thousands on gambling and gaining a tremendous amount of weight due to my neurofeed back training. It is a very dangerous thing to me. It is altering brainwaves. You are playing with your brainwaves. It is definitely not an exact science. I know alot of people are passionate about neurofeedback and have a problem when someone points out something negative about it. ... It is not without fault. And most of the clinicians are not doctors. They have a doctorate in something, but are not M.D.'s. I think they should not be allowed to tinker with the brain without a medical degree. I am writing my congressman about what happened to me. It is not something that is safe for everyone, just like not all medicines are safe for everyone.

Last edited by Bernard; 11-21-2009 at 10:43 PM. Reason: edited comment per forum guidelines
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Old 11-21-2009, 10:27 PM
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Would you please answer these questions for us compcoll:
Rules for posting in this forum

I am interested to know what type of symptoms you were having prior to the NFB therapy.
Did you have a discussion with your therapist when you noticed negative side effects, and work out ways to improve your emotions?
Having done NFB with my daughter, I know week to week we kept a journal, and she was able to adjust the therapy as was appropriate.
Have you made nutritional changes appropriate to brain health?
Have you supplemented suggested vitamins and minerals for brain health?
Are you normally a negative person, or do you think this only occurred because of the NFB?

"Thoughts become things... so choose the good ones."
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Old 11-21-2009, 10:53 PM
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Hi compcoll, it would really help put your story in perspective if you would answer the questions listed in the rules for posting in this forum thread.
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New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

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Old 11-22-2009, 06:39 AM
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Nerofeedback wont work for everyone, just like anticonvolsant drugs dont work for everyone. I cant believe that it has caused weight gain. IT is a science devolped by N.A.S.As best scientest. After the brain mapping they can even tell you where the problems are comming from. Sorry you had a bad experince but, that dosnt change my mind that its the best thing to control epilepsy. It works for some of us. Sorry it didnt help you. I would try another center that provides this treatment. Life is full of chances!
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Old 11-22-2009, 09:01 AM
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Mike,
As you said, neurofeedback doesn't work for all, nor does medication, or brain surgery. Some of us are in that small percentage that it is hard to find anything that works to control seizures. Compcoll stated that she wishes she'd never done neurofeedback and I feel the same about brain surgery. For me, it made seizures worse!
And to Birdbomb, I hate to burst your bubble, but for some of us, the VNS does work! I tried it as a last resort, and finally the VNS is the something that works for me. So who are we to judge one another by what works for one?
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Old 11-22-2009, 11:44 AM
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Yes were all different so different treatments are so very important to us. Its very cool that we have each others experinces good and bad to help us look for what works best for us!
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Old 11-22-2009, 02:21 PM
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Compcoll- As you can see, you hit a nerve with the neurofeedback followers. This website's main thing is about neurofeedback. Like you, I think that it is bullcrap. That is why I have never done it. I read a comment from someone on here a while ago that was actually hurtful to me...This person said that neurofeedback trains your brain to stop using seizures as a release mechanism. Really?! That person does not even have seizures, so they really have no place saying something like that...There are probably people on here who think that I am wrong, but I have done my fair share of research including having a conversation with my neurologist that has a PhD and specializes in E. He said that neurofeedback is not scientific at all and that there is no credible research supporting it (as far as E goes). This is why insurance doesn't pay for i as a treatment for E. These clinicians are making a lot of money. They arent going to not treat someone when it buys them a new house and a new car. Best of luck to you.

Last edited by Rach_nc1984; 11-22-2009 at 02:44 PM. Reason: clarification
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