Neurofeedback: Bad Experience

[Bernard]

... 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....

I'd be interested to see this comment if you are able to source it.

... They arent going to not treat someone when it buys them a new house and a new car.

I know of a couple members here that neurofeedback practitioners turned down because they didn't think they could help them.

[Bernard]

... 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). ...

Ask him if he thinks the research supporting neurofeedback's efficacy is on par with the studies supporting the VNS. I'd be curious if he has really looked into it or is merely parroting the same message that's been bouncing around the neurology's echo chamber for a long time.

BTW, the leading researcher into QEEG guided neurofeedback for epilepsy/seizures is a licensed neurologist based in Dallas.

[Mike]

Nerofeedback trains brain waves that are not in normal ranges,like Beta, High Bata and SMR to operate within normal frequancy ranges. I think that Low Energy Nerofeedback is less harmfull than taking a handfull of pills that could cause a dozen bad side effects. Most of the anticonvolsants kill your liver or kidneys. If that dosnt hit a nerve what else could!?

[Rae1889]

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..

Hi Rach!
The brain does actually use a seizure as a release mechanism in some people. mostly those with psychogenic(psychological) seizures. Ex: Someone who is in a rage of anger. You hear of these people "seeing red" *simple partial*, doing things they can't control *complex partial*, or just dropping out cold *atonic*. These are all symptoms of certain types of seizures. So why can't it be possible and probable that these people have a tonic-clonic too? *I am sure I read this has happened, I will find it again for you*

I am not saying that these action are seizures, but they do sound similar. Their brain is reacting to the over-whelming emotion in a way it has found adequate. sort of a reset for these people. so Neurofeedback could help in this person's seizure control too.

There are reports of people who have just been given bad news *ie: death in the family* and have been so over come by grief that they have a seizure and never had one before or after. So this is not unheard of.

Kindling is also a form of your brain having a seizure because it is used to doing it within a certain setting. *ie: you usually smell burning rubber before you have a tonic-clonic. Then when you really do smell burning rubber *as this time it does exist* you go into a tonic-clonic. Your brain cannot tell the difference anymore, and goes into its normal response mode.

But I do understand where you are coming from. Especially if that person doesnt actually have seizures.

[RobinN]

I actually think that the evidence is clearer to a person that does NOT have seizures, such as myself. I have had the ability to judge behavior before during and after NFB. I can also tell what is going on due to nutritional changes too. I have the ability to keep records as to what supplements were taken, at what time of the day. How the person with seizures is behaving during a certain time of the month, etc. I can put two and two together to connect the dots when the person having the seizures is not able to. I think it takes the ability to stand back from the situation at times, to get a clearer picture.
Of course that is just my opinion, and what has worked in our situation.

[Birdbomb]

Acupuncture has been around for 100's of years but western medicine refuses to accept it as a legitimate form of medical treatment. Many insurance companies still refuse to pay for acupuncture mine included. Is it a sham? A fake? A waste of money? If personal opinion matters, I think it works. Does it work for everyone? Does any ONE treatment work for everyone? Insulin? Chemo? anti-epileptic drug? Anti depressants? Hell, NO! As individuals we all must use the trial and error method of treating our illnesses. VNS was not my cure, mine was diet. VNS has helped many, but also hurt just as many as it has helped. Find something else for yourself, if neruofeedback wasn't for you. There are many options.

My Ok, I'm done, time for a nap.

[KelVarQ]

I think it takes the ability to stand back from the situation at times, to get a clearer picture.

Robin I agree with this 100%. My husband was the one who diagnosed me with E prior to any doctor and I thought he was insane. At the time I was only having simple partial. He's also the one that recognized that I started seizing again after RTL (nocturnal seizures). AND more importantly he's the one that always seemed to know when the tonic clonic's were coming days before they would happen since it was he who recognized the building up to it.

And finally, when it comes to seizure triggers he's better at finding them then I am. He knows my seizures better than me or any doctor out there because he's the one with me 24/7. Even my neurologist insists on him coming to doctor visits because he knows more than I do and I'm 40, unlike Rebecca who one might say, "Well, she's young so..."

I think in many cases it's always easier when you're on the outside looking in.

[Rach_nc1984]

I'd be interested to see this comment if you are able to source it.

I sure can....

In some cases Neurofeedback is helpful in training the brain so that it doesn't need to seize as a release mechanism. It raises the threshold level and stops what is known as kindling.

Ask him if he thinks the research supporting neurofeedback's efficacy is on par with the studies supporting the VNS. I'd be curious if he has really looked into it or is merely parroting the same message that's been bouncing around the neurology's echo chamber for a long time.

No can do. My old neurologist is back home in NC and I am living in TX now. Can't afford a new one. I am sure that as a neurologist who specializes in E he has done lots of research about a wide range of things relating to E and the treatment of E. He practices out of Duke University, which is of course a very nice place to go to. Lots of people go to Duke from all different states. I am also pretty sure there is a reason why he is a neurologist and you and I aren't...He probably knows a lot more than the two of us combined. Also he is listed as one of NC's best neuros of 2009....Here is the link if you want to check it out. His name is Rodney Radtke.

Nerofeedback trains brain waves that are not in normal ranges,like Beta, High Bata and SMR to operate within normal frequancy ranges. I think that Low Energy Nerofeedback is less harmfull than taking a handfull of pills that could cause a dozen bad side effects. Most of the anticonvolsants kill your liver or kidneys. If that dosnt hit a nerve what else could!?

That is an exaggeration...I dont know of anyone that takes handfuls of pills, unless they are really sick. I most certainly dont take handfuls. I think I will trust my research and my neurologist on the effectiveness of neurofeedback. And yes you are right that anti-epileptic drugs may be harmful to your liver or kidneys, but that doesnt mean that they kill them...another exaggeration.

Kindling is also a form of your brain having a seizure because it is used to doing it within a certain setting. *ie: you usually smell burning rubber before you have a tonic-clonic. Then when you really do smell burning rubber *as this time it does exist* you go into a tonic-clonic. Your brain cannot tell the difference anymore, and goes into its normal response mode.

That sounds a lot like psychogenic not something that is truly a seizure. I know someone that got diagnosed with psychogenic seizures. That is something that he did. He thought he was supposed to do it under certain conditions and so he did. Everyone's brains are very complicated. Neurologists still have a lot to learn about it and so do we. It doesn't matter what you smell (your example burnt rubber) before a seizure. Just because your brain senses something that isn't there, doesn't mean that when that smell really is there that your brain won’t know what do to with it but have a seizure.

[Rach_nc1984]

I actually think that the evidence is clearer to a person that does NOT have seizures, such as myself. I have had the ability to judge behavior before during and after NFB. I can also tell what is going on due to nutritional changes too. I have the ability to keep records as to what supplements were taken, at what time of the day. How the person with seizures is behaving during a certain time of the month, etc. I can put two and two together to connect the dots when the person having the seizures is not able to. I think it takes the ability to stand back from the situation at times, to get a clearer picture.
Of course that is just my opinion, and what has worked in our situation.

My nephew has seizures as well and I don't pretend to know more about his seizures than he does. After all he is the one having seizures. My parents never treated me like that. They care about me and made sure that I got the proper treatment early. They NEVER pretended to know more than me on what E is really like. BIG ISSUE HERE....by you saying that you see the clearer picture because you have the ability to do keep records on supplements, time of day, time of the month is just ignorant. Me and my 2 friends have E too and we are all capable of those things...I think that is extremely rude to say to someone with E that you know more about what it is like. I can "put two and two together" and "connect the dots" just the same as I did when I wasn't having seizures and was not on meds or any other therapy. Just because I have seizures doesn't mean that I am out of work, on SSDI, and unintelligent. It is just flat out ridiculous to claim that you know more than someone with the actual problem. That would be like me saying "My nephew has autism but I know more about it than he does, because I can see the problems he is having." That is wrong. My nephew knows more than me about what autism is like because it is something that he deals with every day. Do you know more about cancer because you dont have it? Do you know more about fibromyalgia because you dont have it? Blindness? Deafness? A person that makes this claim is really showing how full of themselves they are.

[KelVarQ]

I think that is extremely rude to say to someone with E that you know more about what it is like.

Forgive me for jumping in here, but I don't think Robin meant that she "understood" what it's like to have E, but rather what helps to control the E by merely observation. This makes sense since the caretakers have the ability to observe us in ways that we're not always aware of. Perhaps you misunderstood her response, which I found to be 100% correct and I do have E. The caretakers have the ability to recognize our behaviors and by keeping daily records of our supplements, diets, meds, behavior, NF, etc. gives them a better advantage of finding what works best for us or what's not working for us...hence, "connecting the dots". I agreed with Robin because my husband definitely knows my E better than I do and he doesn't have E. There are times I tell him I'm not even seizing when in fact I am. This does not mean he "understands" what it's like to have a seizure. I'm sorry but I think you misunderstood Robin's message.

Kindling? My neurologist from Columbia Presbyterian in Manhattan (known for treating E) talks about this as well. The brain "learns" to seize because the "brain has memory".

[Rae1889]

Rach,
My fiance always knows when I am about to seize, way before I do. And in my case. When I smell burning rubber, I have a tonic.

Recently I was hanging out with my friends, and one of them started burning a pencil. They started burning the eraser and it smelled like burning rubber, and I had my first and only tonic in front of them.

So yes it does happen like that. And I do not have patchogenic seizures.

[Rach_nc1984]

So since the brain has memory and learns how to do it then one could make themselves have a seizure because your brain knows how to do it?? I am a little confused right now....

[KelVarQ]

I am also pretty sure there is a reason why he is a neurologist and you and I aren't...He probably knows a lot more than the two of us combined.

Yes, I'm certain neurologists know more about the brain than we do, however, neurologists are not necessarily in the business of treating us holistically and I think many if not most turn a blind eye to it. This is exactly why I come on this site...to talk to others about what's working for them holistically because the majority of neurologists only want to give you meds, which is understandable but not always the BEST choice for some of us or even the ONLY choice. If my neurologist told me that per se' being Gluten free would not stop my seizures does not necessarily mean that he would be right simply because he's a neurologist. ONLY I would know best and my husband would know before I would considering he's the caretaker / observer. Keep in mind that neurologists are not in the business of finding out "why" you have seizures but simply controlling them period. For example: When your 1st diagnosed they don't start taking tests to see if you have any food allergies or anything like that, they immediately put you on meds and that's the end of it. If the med don't work? Try another med? If that one don't work try another or these together and so on. And when they all don't work...let's see if you're a candidate for surgery or VNS. NEVER do they try to determine WHY (the underlying factor) which is WRONG, in my book. That's where the individual comes in and this is when we are in fact smarting than the neuros because we're the ones trying to determine the WHY and what works best.

[Rach_nc1984]

Of course doctors try to find out why...that is what eegs, mri's and other tests are for. If a doctor was to put you on meds and not do any testing as to why you are having seizures then they can really be putting you in harms way. What if you are having seizures due to a tumor in your brain? If they didn't know why and just put you on meds then that would not help at all...so one of the first things they do is try to find out is why.

[KelVarQ]

So since the brain has memory and learns how to do it then one could make themselves have a seizure because your brain their how to do it?? I am a little confused right now....

Rach, I don't think "kindling" is necessarily a conscious choice. However, I can tell you that if I start to really sit back and think about them or discuss them in great detail I can actually feel myself bringing one on. Perhaps it's similar to like anxiety in that case. If you've ever had anxiety and then you start to really sit back and think hard about it chances are you may have an anxiety attack. But, this does not mean that one would not seize if they just didn't think about it or talk about it, although I try not to. Maybe another ex: (we'll use anxiety again) if something triggered you to have an anxiety attack wouldn't it be safe to say that you could have an anxiety attack due to an experience that was similar to the one prior? This is because the brain has memory. I actually can see this idea in a lot of cases...some good and some bad.

[Rach_nc1984]

I tried my hardest but I just cant seem to give myself one. DAMN!!!

[KelVarQ]

Of course doctors try to find out why...that is what eegs, mri's and other tests are for. If a doctor was to put you on meds and not do any testing as to why you are having seizures then they can really be putting you in harms way. What if you are having seizures due to a tumor in your brain? If they didn't know why and just put you on meds then that would not help at all...so one of the first things they do is try to find out is why.

No, that's not what I mean. Of course they try to find out about the seizure themselves (EEGs, MRIs) but they don't try to find out what the underlying cause is (if there's no tumor or anything like that). I mean there are other reasons for seizures to occur (maybe food allergies or perhaps some imbalances in the body...I've even heard something to do with a neck problem). I'm sure the list can go on. Basically anyone can have a seizure but E patients have a low seizure threshold and rather than trying to learn how to raise the threshold by maybe supplements (magnesium), gluten free, exercise, vitamins, no caffeine, etc. they just put you on meds. I've already had RTL and was seizure free for 4+ years and now I have seizure again. I want to know why? I don't want to just be given meds or a 2nd surgery and I want to know WHAT IS THE UNDERLYING CAUSE? This they do not help you with and you're forced to find out for yourself by trial and error. Yes, neuros are smart and know more about the brain than I do, but they're not interested in holistic approaches or finding ways to raise the threshold and that's where those who find NF to be helpful or diets are smarter than the neuros.

[KelVarQ]

I tried my hardest but I just cant seem to give myself one. DAMN!!!

Well, with that sarcasm you're going to give me one so I'll cut this one short.

[Rach_nc1984]

Maybe if you want to speak with a doctor maybe you should speak to a homeopathic doctor...Most people with E have ideopathic seizures. I am one of the many that the doctors can't find out why. Sometimes we just have to accept that there is something wrong with us and that it is unexplained. Neurologists and people like ourselves do not know enough about the brain to be able to find a definite cause 100% of the time. It really blows in that respect, but if nobody knows then we have to deal with it the best we can.

[KelVarQ]

Maybe if you want to speak with a doctor maybe you should speak to a homeopathic doctor.

I do now see a homeopathic doctor and my primary is helping me now as well. Again, my neurologist and most neuros don't find out the why (unless it's a tumor or something) and give you meds. I don't really know anyone diagnosed with E told the "why" they have it other than some abnormality in the brain. Yes, I know there is no cure for E, however, there are ways to raise the threshold and that is what I'm here learning. I do deal with it the best I can and have a very happy fulfilled life, however, I refuse to just sit back and accept what the doctors say as truth because I already KNOW they're not in the business of raising the threshold, which again I understand but wish they would consider it. There are quite a few people on here who don't take meds and control their seizures through diet, supplements and NF. They're simply raising the seizure threshold and it's working. As a matter of fact, Robin, it's her daughter who has E and she's taken a proactive approach to raise her daughter's seizure threshold and has had luck because she refused to sit back and accept it as is and I say good for her and her daughter. I don't know if you read any of her posts about Rebecca's diet and the nutritional changes she's made, but you should give it a shot maybe you too will have luck and maybe find out "why".