Found a Neuro-Feedback expert in the area...

[Zara]

Unfortunantly he works in a training practice training doctors and the practice only takes on full families and they don't practice neurofeedback... I'll have to see what if anything I can figure out about them and maybe he'd be interested in working with me as a learning experience for both of us. Might be fun.

[Bernard]

Interesting. Good luck!

P.S. You can also try contacting EEG Spectrum and asking if they have any members/affiliates in your area. I did reach out to them to try and get forum members a discount on neurofeedback training.

[Zara]

Great news the one Neurologist who does this in the area called me back today and sounds as if he may be interested in helping me. That would be so awesome if that is the case. I can't wait to find out what happens next and to see where it goes as this is something I have looked into as an alternative treatement that I thought could help me a lot.

[Bernard]

That's great! I hope it works out for you.

Stacy says she has noticed some improvements already with clearer thinking. I think she is responding to the neurofeedback much faster the second time around.

[RobinN]

Bernard, there are quite a few in my area. I have looked at the list many times, and don't really know what to ask. In your opinion what makes a good practitioner?

[Bernard]

You might ask if they are aware of the protocols/research for neurofeedback and epilepsy or if they have previous experience working with someone with epilepsy.

You might also ask if they are members of (or trained/certified with) AAPB, ISNR, EEG Spectrum or EEG Info.

I would think that any practitioner who has been doing it for a long time would be capable even if they haven't worked with a client who has epilepsy before.

[RobinN]

So length of time practicing would be a good starting point. There is quite a list for my area, and I would be willing to drive a considerable distance for good results.

[Zara]

He has been practicing for two yrs. and has never worked with an epileptic before though he is booked entirely full. He is someone who was trained by someone who is "The Best" in the Epilepsy field of Neurofeedback field. He gave me his credentials of the site EEGInfo as the people who trained him. He has one opening in November and he said he is going to talk to his people to see if they think that I would be a good candidate so if you happen to know anyone who knows anyone in his network then please if you could pass a word on my behalf of my needing help to get these under control please I'd appreciate the help.

[Bernard]

That's great Andrew. EEGInfo is a business that trains neurofeedback practitioners. It was started by the Othmers who also set up a non-profit foundation to promote neurofeedback for epilepsy.

Search around for the Othmers and you will find that they are very active in studying neurofeedback.

[Zara]

It seems like it may work out if his support team is willing to help to teach him to work with an epileptic and who better than someone who already understands the movements of energy through their mind. I mean I think we could make a perfect pair for his crash course in healing me and you never know he may just become the next "Best" in his field, though I think that may be a bit hard to do.... He could at least become a really great person in his field. He has asked that I not advertise who he is and what he's doing where it can be displayed so I'm trying not to do that though he did say that he would need to hear from these people before he makes his decision. I hope he decides to enter the field. I really prolly would lose a lot of respect for him if he didn't. Especially after I learned why he came here in the first place.

[Bernard]

There really isn't any magic to it. The protocols for SMR normalization are pretty well established. If your contact needs any assistance in getting the proper protocol, you might put him in touch with Dr. White at the Enhancement Institute (where Stacy goes for neurofeedback). I am sure that she would be willing to help him get what he needs.

[Zara]

Thanks much Bernard...

[Zoe]

Hi Andrew,
I hope this works out for you. I had about a year of neurofeedback training and it helped a lot. There was a point, after several months of the training, when something in my brain just kicked in. It was like a stuck gauge freed up. At that point a lot of things eased out for me, my sleep, my moods, my concentration, and my thinking. I think the SMR training helps the nervous system relearn how to self correct itself so our reactions to things become more normalized. I'll keep my fingers crossed for you!

[kurt.othmer]

Thanks Bernard for inviting me on your forum, and for all your hard work helping those with epilepsy.

As you know, my brother's epilepsy is what brought us to this field of Neurofeedback, so I feel very passionately about helping others who suffer with Epilepsy.

Regarding the questions about finding a Neurofeedback therapist, I tell people that the most important thing is that you relate well to your therapist. This is therapy after all, and you want to know you are working with someone you relate to, and who understands you and is willing to work with you and improve and adjust the training to get the best possible outcome for you. I highly encourage people to shop around and call several different clinicians and ask them about their experience and the populations that they like to work with. The right clinician for one person might not be the right clinician for someone else.

You are correct in saying that protocols for epilepsy are well established and easy to get your hands on, and there is a great deal of research eeginfo.com/research/epilepsy_main.html – If epilepsy did not respond so readily to Neurofeedback, this whole field would probably not be here today. The first work of this kind was at UCLA by Dr. Barry Sterman, and he discovered that cats, after doing Neurofeedback, became seizure resistant when exposed to poisonous chemicals. The discovery was unintentional as the cats from the Neurofeedback research simply ended up in another study, and then turned out to be far more resistant to seizures as compared to other cats. The Neurofeedback that they were doing then on the cats, and subsequently on human patients, was a lot more crude as compared to the techniques and computer technology that we have today, now 30 years later.

So put another way, I might say that even a very new and unexperienced clinician is going to have a good chance of having success with most Epilepsy cases with Neurofeedback. But then there are the tougher cases. If you are not getting the results you want from Neurofeedback, start asking your clinician if they adjust the training for different clients and use more than one electrode placement with their clients. Also, do they use different frequencies? There is also interesting new work adjusting the frequencies much lower.

It's also good to ask if the professional is a Licensed professional, and/or has Certification in Neurofeedback.

Kurt Othmer
EEG Info, Inc.

[RobinN]

Kurt - Thank you for joining us here at CWE.

I appreciate learning more about Neurofeedback, as I was only introduced to it here from Bernard. I have been reading more about the subject while doing research for the care of my 16 yr old daughter. She had her first seizure 1.5 yrs ago. It has taken me this long to see that perhaps the drugs that she has been given are actually causing more seizures than eliminating them. So I have begun to look at alternatives. One that has been helping a lot is a different nutritional plan. Another alternative I am interested in is Neurofeedback.

I appreciate your suggestions as to how to find a reliable clinic. This has been one of my concerns ever since first reading about this type of training. I am going to take my time and read more from your website. I see that you are not far from us.

Thank you for taking the time to stop by.

[kurt.othmer]

Robin,

Thanks for the quick response. I feel so passionate about Neurofeedback, and epilepsy in particular as epilepsy is what brought my entire family into this field. My brother's story is told on our non-profit website brianothmerfoundation.org - named after my brother, and his story is also told in the book "a symphony in the brain" by Jim Robbins.

What I like most about neurofeedback is that it is exercise for the brain. The brain is simply seeing a mirror of itself and learning from what it sees. So we are not putting anything in, we are only monitoring what the brain puts out in the way of electrical activity. And in the case of epilepsy, that is exactly where the brain is having trouble, is regulating that electrical activity, and keeping it from spiraling out of control. To exercise that mechanism to help the brain keep itself from spiraling out of control, to me sounds like an ideal solution. Especially when compared to the alternatives of ingesting chemicals. I'm so excited to be involved in this work. I think of it like taking your brain to the gym and afterwards it's stronger.

[RobinN]

This is all very interesting, and I thank you for the additional information.
Prior to Rebecca's seizures she has had some learning difficulties and if this could allow her to use her skills more effectively that would be awesome. I will continue to do my homework.

Do you know of ways that insurance has covered it? I guess it would matter how it was diagnosed.

[kurt.othmer]

Referrals from MDs help a great deal in getting insurance to pay. Also, insurance tends to be more aware of traditional biofeedback for things like anxiety and relaxation and headaches, Neurofeedback is too new (only been around 30 some years) so insurance is a little tougher on expanding out to other conditions like epilepsy. But with a doctor's referral, you can usually submit to insurance for at least partial payment. But that also depends a great deal on what state you live in.

I recommend calling your insurance and asking if they cover biofeedback. Find out if they cover it for epilepsy. You can also ask them if you need a letter from your MD to get coverage. Ask them how many sessions they cover, sometimes they only cover so many per year. Find out if they cover out-of-network providers, and if there is a licensing requirements for those providers. If they need to know the code for biofeedback, it's 90901.

Kurt Othmer
EEG Info, Inc.

[Bernard]

I feel so passionate about Neurofeedback

Hi Kurt, fantastic that you were able to pop in.

I'm known in some circles as "Johnny Neurofeedbackseed". Kindred spirits...

[RobinN]

Thank you Kurt. That was very helpful information.
It is hard to even approach this issue sometimes for fear of the red tape and not knowing the vocabulary that will get you through the door.