Neurofeedback - Rebecca's Story

[RobinN]

I apologize Scott for not realizing you posted on this thread.
Thank you for your kind words. Yes we are precious to each other. I do want to clarify that our insurance covered the ambulance ride. Though I do notice lately that individual fees are definitely rising here, after our new Health reform was passed. My copay at the doctors office this week, had gone from $20 to $30. Reasonable for a visit, but % it was high.

This concept holds that everyone has a certain balance (probably genetically determined) between excitatory and inhibitory forces in the brain. The relative proportions of each determine whether a person has a low threshold for seizures (because of the higher excitatory balance) or a high threshold (because of greater inhibition). According to this view, a low seizure threshold makes it easier for epilepsy to develop, and easier for someone to experience a single seizure.

http://www.epilepsyfoundation.org/ab...ethreshold.cfm

What is a seizure threshold?
A seizure threshold is the level of stimulation at which your brain will have a seizure. A very high fever, for instance, can sufficiently excite anyone’s brain to produce a seizure. People with epilepsy have a lower–than–normal seizure threshold, meaning that only slightly increased excitement will cause them to have a seizure. Your seizure threshold is mostly genetically inherited, but other factors can affect this level. Young age and high fever are two factors that may lower one’s threshold, making a child more likely to have a seizure.

http://epilepsysupport.aarogya.com/f...s.html?start=2

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC387262/

http://seizurethreshold.org/seizuret...lddefined.html

http://www.normalbreathing.com/d-seizure-threshold.php

[RobinN]

Quick Update:
10 months seizure free
3+ years med free
Rebecca is in her second year of college, and has a part-time job. She is not driving yet, however we are making some inquiries for her to do so on her year anniversary of being seizure free.
Her nutrition is still somewhat controlled, but not perfect. She does tell me she feels different (not a good feeling) when she is not eating well, or taking her supplements regularly.

[scott001]

Thank you RobinN.

[RobinN]

Oops... I had it in my head that Rebecca's last seizure was January 11th, but reading my posts around that time I see that it was Feb 8th. It is very hard not to celebrate today (I think I still might, after what we have been through), but keeping it all real, Feb 8th it is. (Keeping that journal up even in the good times still proves to be a Good Thing)

She has auditioned with Disney on Ice and now is in the waiting phase, to see if she will be picked up with the next tour. So much has to fall into place to make it happen. She continues with her life. Started her winter short quarter at school, working part-time, broke up with BF, and now has two more interested in her. Life is going as planned... thank goodness.

[maddiesmom]

Robyn,

What good fortune that you wrote today. First, congratulations on the upcoming anniversary!

I consulted today with a local neurofeedback provider. I was really impressed -- she is an amazing and I think one of the leading experts in the field. Her name is Dr. Mary Esty (or Etsy?) in Washington. She seemed to think my daughter could benefit greatly from treatment but said that in her practice she thinks about two thirds of people have improvement, one third don't but no one has ever regressed. I talked to her about seizures because she said the one side effect that about half people see is a slight worsening of the problem (whatever problem you have) after the first one or two sessions. It can be drowsiness, brain fog, lack of attention, or in our case seizures. Did you experience this? I also noticed in the consent forms that it says that if you're seizures are not controlled by medication then you are probably not a candidate. I was wondering if that is just standard legal lingo because it seems like mostly people seek this treatment whose seizures are not controlled. Finally I went into this meeting thinking that neurofeedback was slightly different from what it actually is -- I didn't realize that while you are hooked up to the machine that an actual current of energy is flowing into your head. She said the sessions are very short -- a couple minutes -- and that those long half hour sessions are a thing of the past. Is this the kind of neurofeedback that your daughter tried? I am going to post a general message about this as well.

[Nakamova]

Unless the process has changed significantly, I don't think neurofeedback involves a current flowing through your head. The electrodes attached to the head are meant to monitor the brainwaves being produced and send information to a video-game like set-up. The good brainwaves are "rewarded" and the bad ones are "discouraged" by allowing progress through the "video game" -- not through current sent to the subject.

Hopefully, Robin will weigh in to clear this up...

[maddiesmom]

I tried to post the link to their site but it won't allow me to post links.

[RobinN]

No this is not what my daughter's therapy was like. Rebecca's appts were about 60 mins. 15 minutes to get settled, update the clinician on things such as sleep patterns, focus in school, etc., attach the wires, and 30 minutes of therapy using the video programs, then 15 min to clean up, and off we went. I was not in the room, but could hear all of the interaction.

*** Yes Nakamova is correct. No currents are flowing into the brain. It reads brain function.Depending on what area of the brain is being targeted for training, that is where the wires are attached with a wax like substance.

I am not sure what program this woman is speaking of but it is not how the EEG Institute trains their therapists. I am sure you could speak to a person at the clinic here in CA since they train all over the world, and ask them how the two therapies differ. Then you could make your decision as to how to proceed.

The side effects that you speak of, drowsiness, brain fog, lack of attention, were all address in the following therapy and the treatment was changed to manage the negative side effects. We saw improvement in focus, and school note taking was noticeable. Some sleep issues, but that worked itself out with how the clinician changed the therapy. Rebecca was still having occasional seizures while in treatment, but that didn't bother me. Of course I wanted a magic bullet, but I know now this was only part of her improvement.

Nutrition and supplements were discussed with the clinician (Sue Othmer) and thankfully I had already done quite a bit of research in this area, and we had begun making changes prior to neurofeedback. It is my opinion that the two go hand in hand.

What made me comfortable in a therapy that I truly knew nothing about, and was going completely on faith, and guidance of Bernard and Kurt Othmer, was the fact that The Othmer's had lost a son to epilepsy, and that she would not do anything to harm my daughter. If she had felt it to be dangerous she never would have continued. Her business depended on this trust.

Are you on Facebook? Kurt has a page for the EEG Institute. I am sure he would be more than happy to answer a question or two, or at least guide you as to where to find your answers. Please use my name when calling or contacting him / them. They certainly were helpful in my daughter's improvement, and I love to share their work with others.

[RobinN]

I tried to post the link to their site but it won't allow me to post links.

post it with spaces and I can make it active after I check it out.

[maddiesmom]

Hope this works! Here you go

Brain Wellness and Biofeedback

[maddiesmom]

By the way, the entire visit would not be five minutes, but the actual amount of time hooked up to the machine she did not think would take very long -- it would be consult and review of behavior and sleep, etc. But she said this "new" way -- and I don't know how new it is, is to go for shorter periods of hook up. She said they still have the "old" way as well, and sometimes they use that for different purposes. Here are the two kinds:

EEG Biofeedback (FNS or Flexyx) and Neurofeedback (Brainwave training)

[maddiesmom]

Ok, I found the description of the two kinds: sorry! here you go:

Different Types of Neurofeedback
There are two major types of neurofeedback, often differentiated with the terms active and passive. Passive neurofeedback (a.k.a. EEG Biofeedback, FNS or Flexyx) does not require any conscious effort on the part of the client. The brain receives feedback directly from the computer through the sensors attached to the scalp while the client relaxes in a comfortable chair. Active neurofeedback (a.k.a. Brainwave Training) requires more direct participation on the part of the client. The client watches a computer screen and controls the activity on the screen with their brain waves. Following the rules of operant conditioning, the client receives an audio or visual reward for keeping their brainwaves in the desired state. Both types of neurofeedback are offered at the Brain Wellness and Biofeedback Center of Washington.
Flexyx Neurotherapy System (FNS) neurofeedback is a noninvasive brainwave biofeedback procedure that involves monitoring and analyzing EEG signals read through surface sensors on the scalp. It uses the EEG itself to guide the feedback. FNS is one form of relatively new ultra-low energy signal devices that deliver neurotherapy and is one type of biofeedback. The most recent name for this type of neurofeedback is Low Energy Neurofeedback System (LENS). This is a form of brainwave biofeedback in which brain electrical activity (EEG) is measured from several of the 10-20 standard sites on the scalp. One of more of these areas is then treated with a brief, weak electromagnetic (or radio wave) stimulus, which may alter the EEG readings in one of more of those areas. The EEG is then measured again (a feedback loop). Several such brief cycles of electrical measurement, electromagnetic treatment, and re-recording of the EEG may be done, resulting in an improvement in EEG activity, which is often persistent for long periods of time, resulting in a decrease of symptoms.

[Nakamova]

I wonder if there have been studies comparing the effectiveness of the two different neurofeedback types, in terms of results and lasting effects. I saw one small study that said the FNS helped with recovery from Traumatic Brain injury, but I haven't read about it with other disorders.

[RobinN]

I would not hesitate to call and have a consult with someone at The EEG Institute about the different "types" of treatments. They do much of the training all over the world, and would have the latest information on this.

[RobinN]

I feel like we have won a trophy.

It has now been ONE YEAR without question, free of seizures.

I know that it is not a sure bet that she will be free from any further issues. However, we will take each day as a gift, and breath a bit easier.

Thank you all, for the years of support.

[Chaz1]

Congratulations Robin and Rebecca - this is better than winning any lottery.

[Eibhlin]

That is fantastic news, , big congratulations to you both!

[Nakamova]

Yay! Congrats to you both!

[maddiesmom]

Amazing. Has Rebecca been very diligent about her diet or do you feel like she sort of reset her system?

[RobinN]

Amazing. Has Rebecca been very diligent about her diet or do you feel like she sort of reset her system?

She has changed her choices quite dramatically. It has been HUGE. Is she 100% compliant? No. This does show up in other ways which I can put my finger on dietary choices most of the time. Thankfully, she knows enough about the choices to keep her diet regulated. We remain GF and CF here at home, which I find makes me feel better. We reintroduce, and we see negative effects.

I also feel the NFB therapy, was beneficial to her health.

My motherly instincts, and intuition, has guided me through this. I don't have studies to prove what I know to be true. It is enough for me.