EEG Neurofeedback

Dignan

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I probably asked this some time ago back when I visited Dr. Walkers office in Dallas, but I wondered if NFB can alter the types of seizures a person has and could this be a negative thing?

For example, if a person gets partials that serve as an aura and a warning to a potentially worse TC seizure, then could NFB correct the partials only, but in doing so, inadvertently take away a persons aura warning system for the TCs?
 

AlohaBird

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^^^^Interesting question, Dignan. I am totally guessing here, but it would seem to me that NFB would "fix" the most aberrant brain patterns first so perhaps you could get rid of the TCs but still have partials.

Hopefully you can find a more educated answer than mine.

I am planning to start NFB soon. Yes, I actually found a practitioner way out here on Molokai. Only drawback is that he has never worked with an epilepsy case before. His practice is mostly things like depression, anxiety, and ADHD.

He is, however, a member of the EEG Institute and is busily researching while I wait for the slow process of a referral from Kaiser to see a neurologist so that we can have him/her as a resource when thinking about medication adjustments.

I'm really excited by the possibilities.
 
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Congratulations on finding a neurofeedback practitioner where you are!
I hope you will keep us updated on your feelings about it. It seems like such a potentially helpful way to go. Best of luck to you.
 

Bernard

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... I wondered if NFB can alter the types of seizures a person has and could this be a negative thing?
My wife's seizure patterns have changed in both seizure types and patterns (timing, frequency) over the years and when she was using NFB. Generally what we saw with her was that the NFB training helped stop/correct the seizure activity that she had at the time she started the NFB.

... For example, if a person gets partials that serve as an aura and a warning to a potentially worse TC seizure, then could NFB correct the partials only, but in doing so, inadvertently take away a persons aura warning system for the TCs?
There is an assumption there that the TC would occur with or without the SP/aura. It's not clear to me if the SP/aura might be a precursor (necessary step) for the TC to occur. If you can avoid the SP/aura, it might cut off the pathway to a generalized seizure.

But as I mentioned, NFB tends to normalize brain activity, so it should tend to fix all the seizure activity (if it's working). Based upon the experience my wife had, NFB training takes a while to "take root" (or become habitual). It's possible you will see improvements in one area (ie. no more absence seizures) before it becomes noticable in another (ie. no more TCs).
 

Dignan

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Thanks Bernard. Your thought on cutting off the pathway to the generalized seizure was where my thought process was as well, but I wanted to ask the question.

Did your wife have aura's prior to her TCs? If so, did she see improvement across the board, or was there more alteration on the aura side or the TC side in particular?
 
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Does this neurologist have it right? I hope not

Our current neurologist seems to quickly dismiss any ideas we offer that differ from the traditional (medications only) path.
When asked about whether neurofeedback might prove useful, he said only if the patient had auras.

Can anyone confirm or refute this statement?

Many thanks.
 

AlohaBird

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There is an assumption there that the TC would occur with or without the SP/aura. It's not clear to me if the SP/aura might be a precursor (necessary step) for the TC to occur. If you can avoid the SP/aura, it might cut off the pathway to a generalized seizure.
Good point, Bernard.
When I feel a partial happening in just my left arm, if I can pinch the nerve bundle at the top forward part of my armpit, it shuts off not only the partial but the TC that would have followed. I guess NFB is a brain based way of giving yourself that kind of pinch.

Bernard, do you have any info about NFB that is specific to nocturnal seizures? My NFB guy and I would both appreciate it.
 

cawhitern

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I've never heard of using NFB for seizures but no surprise there. Most neurologists seem to stay with the traditional methods of treatment and frown on alternatives. My ex husband suffered from migraines and was prescribed NFB but he didn't stay with it so I'm not sure if it would have been successful. I've seen it used with chronic pain with some success, and for anxiety issues with good results. This is extremely interesting. I have a really long aura before I generalize (while awake) and I wouldn't want to lose that warning. If I have a seizure while asleep, of course that's a different story.
 

Dignan

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My neuro originally said it was a waste of time and money, but if I wanted to do it, that it couldnt hurt, so it was up to me. That was 3 years ago.

Now, he has a NFB practitioner working out of one of his offices. That said, he still doesn't believe it effective for seizures, but he says it is helpful for ADHD and other issues. Even so, this is a big step forward for him, given his stance from when I first brought it up to him back in the day.

The general thought I have heard from a few traditional neuros is that it will not replace medication, but as an adjunctive therapy or to try and minimize other symptoms such as memory and focus issues, that may be affected by AEDs, then they are fine with it.

I actually had a QEEG done a few years ago, but was experiencing doctor fatigue, a possible med change, and a job change, so I postponed the actual NFB sessions (I believe they wanted me to do 40 sessions, twice a week- and it was going to be expensive-) Time has passed and I haven't gotten back around to doing it, and my job doesnt allow alot of time to go to sessions twice a week in the middle of the day.

I still feel as though it might be an alternative to try out, but, aside from the financial considerations, I wish it was a bit closer to home so I could make it fit into my life a bit better.
 

Dignan

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It is the brain map they do to guide the process.

QEEG, or quantitative electroencephalograph, involves placing a cap with sensors on the head and recording 20 minutes of data, both with eyes open and eyes closed. There are 19 spots on the brain that is standard procedure to monitor during the QEEG, these areas have been identified and responsible for specific functions of the brain. Once the data has been artifacted and edited it is compared to a normative data base that is both gender and age specific.

This shows us how thebrain compares to a person of the same sex and age. It will show if you have too much of a brain wave frequency or not enough (over or under activation).
 

cawhitern

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Do they take you off your meds to do this? Jeez, I'm an RN and I've had E for almost 40 yrs and I've never heard of this, let alone had one done. It's fascinating what I learn on here!
 

cawhitern

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I just checked to see where you were from.... thought maybe you were from outside the USA.
 

Dignan

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Do they take you off your meds to do this? Jeez, I'm an RN and I've had E for almost 40 yrs and I've never heard of this, let alone had one done. It's fascinating what I learn on here!
Its part of the neurofeedback process. If you aren't getting neurofeedback, then it is likely you will never get one.

They did not take me off any meds. It's just like getting a regularl EEG, its just faster (at least it was in my case). Then after you do the NFB treatments they do another QEEG to compare against and determine improvement.

I'm no expert on NFB though. Bernard or others on the site who have gone through the entire process would know much more about it than I would.
 

AlohaBird

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The general thought I have heard from a few traditional neuros is that it will not replace medication, but as an adjunctive therapy or to try and minimize other symptoms such as memory and focus issues, that may be affected by AEDs, then they are fine with it.
Hmmmmm. Me wonders if perhaps one could approach the insurance coverage from this angle. Get it "prescribed" to deal with the AED side effects.
 

Ruth

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What credentials does a person have to do NFB?

Years ago, I checked into it and 2 people practicing it had different credentials. So, I did not have it done.

It would be good for me now that my neurologist is taking me off of Gabapentin (Neurontin.)
 

Bernard

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...
Did your wife have aura's prior to her TCs? ...
No. She had multiple, daily absence seizures and TCs once every year or two. Her first experience eventually (after 5 months of NFB) led to being completely seizure (and med) free for 4 years. Everything went wonky after she delivered our first child though. I don't know if was hormonal changes or what, but we have not yet been able to get her back to that holy grail of med free, seizure free.

...
When asked about whether neurofeedback might prove useful, he said only if the patient had auras.

Can anyone confirm or refute this statement?
That is incorrect. I suspect he was thinking about the VNS where patients can swipe a magnet when they have an aura. NFB doesn't work that way and my wife is proof that it can be effective for seizures that do not include auras.

...
Bernard, do you have any info about NFB that is specific to nocturnal seizures? My NFB guy and I would both appreciate it.
No, I don't. Sorry!
 

Nakamova

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There's a new neurosignalling product available called "THYNC". It takes the form of a wearable bluetooth device that supposedly stimulates areas of the brain to provide the wearer with "calm" or "energy". You can read about it here:
http://www.thync.com/science-and-technology
and see how the THYNC "vibe" works here:
http://www.thync.com/vibes

It's not neurofeedback, nor is it a precision device, but it's interesting. I can't tell by reading about it how safe it would be for people with epilepsy, or which option -- "calm" or "energy" would be more beneficial. Perhaps in the distant future it could be customized for individual needs...

Here's an article about it:
http://www.bdlive.co.za/business/innovation/2015/05/19/calm-vibes-at-the-flick-of-a-switch
 
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Mari

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Until a definitive test can be used to establish epilepsy none of these interventions matter. Certainly not to someone who has been misdiagnosed. Far too many people are subjected to severe, needless trauma due to this lack. Far too many are receiving treatment which is contraindicated for epileptics. Many drugs induce seizures and give the wrong meds. leaves the victim with permanent neurological damage. Epilepsy is horrific enough without adding misdiagnosis to the equation.
 
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