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  #101  
Old 04-11-2010, 08:39 PM
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My insurance company said it won't cover neurofeedback because it is experimental for Epilepsy. We need more research so it becomes a standard treatment!
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  #102  
Old 07-18-2010, 12:33 PM
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Hi Bernard - I'm interested in learning more about neurofeedback. I don't need any more information (you've offered a lot to think about, above). But I do have some questions - in your experience...

Did you notice any personality changes?
Did insurance cover any of the expenses?
Just curious - if you don't feel comfortable, I understand.

Thanks, D in Dallas
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  #103  
Old 07-18-2010, 04:05 PM
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Personality changes? No, not really. Stacy was definitely functioning better overall (better memory recall, clearer thinking, etc.) and I suppose this lead to her being a bit happier overall, but I wouldn't say that was a personality change.

Insurance did not help us cover any expenses. We paid for everything out of our own pocket(s). I have heard feedback from others though that their insurance has helped cover some or all of their expenses, so I guess you never know until you try.
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  #104  
Old 07-19-2010, 11:43 AM
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Bernard - ok - I still have a lot to learn. I think maybe the personality changes I was reading about had to do with some meds? That it can make someone really slow down, but not everyone. Not sure...anyway, thanks again for all the great info! I can't tell you how much it has helped us. D
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  #105  
Old 08-20-2010, 12:31 AM
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We just got our QEEG results from a neurofeedback clinician. Our son had a lot of high beta waves in 2-3 area of the brain and the clinician recommended uptraining theta waves. My concern is I thought from reading literature that increasing theta waves can cause seizures and that normally, to decrease seizures, the protocol was to decrease theta and increase SMR (low beta) waves. Any info/opinion on this is greatly appreciated. Also, sharing of protocol that have worked is also appreciated.

thanx in advance.
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  #106  
Old 08-20-2010, 08:04 AM
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The first protocol ever developed for seizures focused on SMR normalization. Lately newer protocols focus on QEEG normalization.
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  #107  
Old 08-20-2010, 08:57 AM
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Originally Posted by Bernard View Post:
The first protocol ever developed for seizures focused on SMR normalization. Lately newer protocols focus on QEEG normalization.
Thank you for your response Bernard

May I ask what protocol your wife was using? Was she working on SMR normalization or QEEG normalization?

thanx
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  #108  
Old 08-23-2010, 06:38 AM
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IIRC, She used the SMR protocol the first time.
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  #109  
Old 08-23-2010, 11:46 AM
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It seems to me that SMR is tried and tested. I am a little afraid of trying the QEEG normalization. I wonder if one works better than the other....?
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  #110  
Old 08-23-2010, 01:40 PM
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Dr. Jonathan Walker in Dallas is one of the pioneers of the QEEG protocol. He's had some impressive results and published studies (see the Neurofeedback Treatment for Epilepsy specifically).

More on Dr. Walker: nocturnal seizures, neurofeedback, seizures
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  #111  
Old 09-02-2010, 08:24 PM
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Is there a cut off point, a point you reach where the nerofeedback stops bieng productive? Maybe even cause seizure activity?
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  #112  
Old 09-03-2010, 09:31 AM
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Neurofeedback is basically an exercise system for the brain. Much like with muscles, I'm sure there is a point of diminishing returns - where increased training (with the same protocol) yields little to no benefit.

As far as causing seizure activity - that should only occur if the training was encouraging abnormal brain activity. It should not happen with a competent NFB practitioner.
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  #113  
Old 11-15-2010, 12:55 AM
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Bernard, has anyone given you a medal yet?

Many thanks.
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  #114  
Old 11-15-2010, 08:06 AM
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I occassionally get feedback either through the forum or directly via email from people who tried neurofeedback after reading one of my posts somewhere. The success stories (even if partial) mean more to me than any medal ever could.
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  #115  
Old 11-15-2010, 10:30 AM
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My daughter, Rebecca, is one of his success stories.

If it had not been for Bernard, I would never have learned about neurofeedback. It most definitely was the beginning of Rebecca's road to recovery. She is now 7 months seizure free. Not the only therapy, but a significant part of it.
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  #116  
Old 11-16-2010, 10:26 AM
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I think neurofeedback is an excellent idea and I do think insurance companies should be pressured to carry it. I'd like to use neurofeedback not only to control seizures in the nick of time before they become full-blown - but also to achieve altered states of consciousness. I suppose certain kinds of meditation can put one in a state less likely for the emergence of seizures.

Has anyone ever figured out how to stop an impending seizure by will power alone?

I'm curious about those New Age gadgets they sell on the net - neurofeedback devices. Are they any good? Has anyone ever tried them?
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  #117  
Old 01-10-2011, 04:05 PM
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Sue Ford sent me an email highlighting a small study she was involved in:

http://www.eegcentreforneurofeedback...orbidities.pdf

She said:
Quote :
Wanted to share this poster written by Stella Legarda, MD, Ped Neurologist of her observations with her patients success with NF under my care using Othmer approach. She presented this information at a meeting of neurologists last month in the U.S. After she witnessed what NF could do (even with her most severely impaired patients) she went to CA, took the Othmer Training and is now doing more research on NF at Georgetown University. When she was on staff at Spartanburg Regional Hospital in South Carolina she developed an Epilepsy Fund for her patients who were low income. That fund paid for these children's QEEG's performed by James R. Evans, PhD and got them started on their NF journey. My hopes are that in the future we might have funding for low income severely disabled children who need NF.
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Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback.

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We recently had a bunch of new neurofeedback practitioners agree to offer CWE members discounts for service. See post #12 for the list of all participating practitioners.
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  #118  
Old 01-10-2011, 04:22 PM
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That's awesome!
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  #119  
Old 01-25-2011, 02:38 AM
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I am thinking of having Neurofeedback therapy in Austalia but can not find much here are you still seisure free?
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  #120  
Old 01-25-2011, 06:15 AM
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Yes, It seems that the Nerofeedback and my meds keep me seizure free. I had a couple of set backs last year that were caused by med changes but I am 141 days seizure free again. I havent recived nerofeedback treatments for 6 months.
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