Neurofeedback: Bad Experience

[Rach_nc1984]

I've never been able to bring on a seizure, either, by just thinking about it or mentioning it. That is just an assumption.

And if you can bring on a seizure, wouldn't that be in the "pseudo-seizure" category?

This is what I have been trying to say Cint...thanks. I am glad that someone understood what I was saying.

 

[vapour]

WoW this thread has caused an uproar almost.

I will give my 2 cents worth here. I agree with the comment about medications causing all sorts of side effects and long term damage possibly to the liver or kidneys.... this worries me alot.

If I could afford it and I was not reliant on people for a ride to far away places, then I would try Neurofeedback, I have only just managed to get my medication covered...hopefully will be in with Neurology UCLA soon as well as psych.. so they might do it > not sure... if they do Id try it... heck ... Id try anything for seizure reduction besides meds... this is why Im trying to get on the TNS study.

I dont know much about Neurofeedback but it doesnt seem like something that would cause harm... exactly.. does MRI do this to you or a regular EEG ?

Well I was actually going to say something besides this.. but forgot ! darn it !! LOL

 

[vapour]

ALright I just remembered !! ... I do believe in kindling. Cint posted me a documentary by a famous Neurologist called Dr Ramachandran... and he spoke about this....it was very interesting... my neurologist also believes in kindling.. and she is an epileptologist. I take this very seriously and it actually scares me because my seizures are not 100% in control...though better than they are off meds (as I recently learned)

 

[Rach_nc1984]

My sarcastic comment was meant to be funny. I am in general a sarcastic person. Not to the point of being obnoxious, but it is just the sense of humor I have. I know that not everyone I know is going to think a sarcastic remark I make is funny. Different people have different senses of humor. Anyways....No big deal.

 

[Chris515]

I actually found that post quite offensive, because if you knew your trigger you could definitly make yourself have one. I know that sometimes just talking about it, I'll start to myoclonic. Ask Chris515, we talk about it lots in person and then all of a sudden, twitching shows up. Coincidence, not really as I dotn twitch often. If I burned some rubber, I would have a tonic. I guess that means I can have when any time I feel like it. Don't wanna go to work? burn my eraser at my desk, have a tonic and get to lye in a hospital bed and sleep. Not my cup of tea, but I could do it.

I beg to differ. Stress and panic and high emotion are triggers for some people. So if thinking about a seizures stresses you out, or panics you, then yes, that can trigger a seizure. Sarcasm can frustrate alot of people.

I think that RebeccaN is proof that neurofeedback works for E. But liek any seizure control method, it wont work for everyone. Just like Neurofeedback will not work for every person with ADD or mood disorders.

Excellent points Rae. I would have quoted the whole thing but it was really long.

Rae and I do talk about epilepsy in person and often twiches do show up. I don't think it is a coincidence.

I think talking about seizures can cause one, as does stress, emotion, or just remembering one. Everyone has different triggers.

For me it is very stressful events that can cause tonic clonics, almost every time. And less stressful events can have a cumulative effect on me causing auras and simple partials, which can sometimes generalize.

I have had auras when passing a place where I had a simple partial seizure. The location is always burned into my brain and when I go there again I can feel the activity starting.

I think neurofeedback does work for some people. I'm hoping to try it. Just because it's not scientifically proven yet doesn't mean it does not work.

 

[Bernard]

I've never been able to bring on a seizure, either, by just thinking about it or mentioning it. That is just an assumption.

It's not an assumption. It's a reality for some people. A lot of people on E forums get a "tunnel vision" in thinking that their own experience is the final word on the whole spectrum.

This is what I have been trying to say Cint...thanks. I am glad that someone understood what I was saying.

I understood it the first time you said it. It's obvious that you haven't read or understood the information presented regarding kindling or you wouldn't keep harping on this point. You are arguing against a straw man.

You both might find this thread of interest:

http://www.coping-with-epilepsy.com/forums/f23/can-you-will-seizure-1799/

More info:

http://www.coping-with-epilepsy.com/forums/tags/neurobehavioral therapy.html

 

[Cint]

may chime in here for a minute, and this statement is NOT meant to aggravate anyone, but to simply make a point:

While it is TRUE that it takes 2 seizures to give the LABEL of E, it does happen quite often that people are given AEDs after ONE seizure--ESPECIALLY if the initial seizure was especially long, or especially violent. Sometimes, the patient is weaned off the meds given, sometimes they are not....it depends on tests done.....

Well, I sure wish I'd been given something, even a diagnosis of epilepsy would have helped, along with either a medication or some kind of feedback. I had more than 2 seizures before being put on any medications. I had been to the dr. who kept telling me "it was all in my head." Really?! They finally listened to me after I suffered 1st and 2nd degree burns from having a bad seizure in the shower. They put me through all kinds of testing while in the hospital for 2 months. I don't care to be burned or suffer any more injuries, therefore, I am not willing to go off meds, EVER!

 

[Cint]

It's not an assumption. It's a reality for some people. A lot of people on E forums get a "tunnel vision" in thinking that their own experience is the final word on the whole spectrum.

As long as you say, "for some people". Just because others experience "tunnel vision" or the same smells, auras, etc. before seizures, doesn't mean I'm experiencing the same thing. I don't try to say to everyone that my word is the final word or that I'm a "guru" on any thing related to epilepsy, treatments, etc. What works for one, doesn't work for all.

 

[Rach_nc1984]

As bernard said, Most people are put on meds before any testing is done. I am one of those people. You also responded by saying that you have idiopathic seizures. Meaning they dont know what causes them. does that mean that you being on medication is harmful because they didnt do enough testing? MRI and CT scans just rule out brain damage, and tumours etc that are physical.And if a tumor is found then meds can help that person lead a more normal life, should the toumor be found inoperable. EEGs are for the most part, inconclusive for most people. Even if they show up on an EEG doesnt mean that they know what is causing them.

No this does not mean that me being on meds is harmful. It helps quite a bit. There are many conditions (cancer for example) that they dont know why it occurs, but chemo and other therapies have been proven effective in patients (not all of course) As much as I would like to be given a reason why, there just isn't one at least right now. But because the cause of my seizures is unknown does that mean that meds won't help? Of course not. Does that mean that I shouldn't take meds because there isn't an obvious reason? Of course not. I would not be able to live with the amount of seizures that I would have without them. I already said that that post about making myself have one was not meant to be offensive, so that is the end of me discussing that. I am not conttradictin myself at all when I say that my seizures are idiopathic. And I have had E for 16 years....I dont think that anyone would want to have seizures for that long and not take meds that long because the seizures are idiopathic. As far as your question about psychogenic seizures go there are certain characteristics that dont match those of real seizures. Being able to bring one on is one of them. Others are suggestability, predictability and the way the "seizure" looks itself, and the fact that that the brain waves on an eeg during a psychogenic seizure are perfectly normal. Also during psychogenic seizures the person can be asked to remember something, asked to do something and they are able to. For example, the guy that I know that is diagnosed with psychogenic seizures...One time my friends and I gave him some false information to see if he would use it in one of his seizures. We suggested that he should remember something from it. So during one of his episodes, I sang a kids song and lo and behold he remembered it. He also ended up in the hospital and nurses were asking him to squeeze their hand (something that someone who is having a real seizure could not do.) Sure enough he did it. Another one is suggestability. We could say "Austin you don't look too good" and he would have one. We could also predict when they would happen without even saying anything to him or each other. Yes I can define what an organic seizure is. My mistake on saying organic. Organic means that there is a clear reason why...What I meant was that there is physical evidence on an eeg or other neurological test. Hope this response answers some of your questions.

 

[Rach_nc1984]

I understood it the first time you said it. It's obvious that you haven't read or understood the information presented regarding kindling or you wouldn't keep harping on this point. You are arguing against a straw man.

Bernard- You are right. I hav not yet read the info on kindling yet, which I said in an earlier post that I would read and get back to you guys with. I am going by what I have read about it. Don't worry I will read the article on kindling. I am not going to argue a point just because and not look at the other sides of it. If I were to do that then I wouldn't really ever to be able to learn something now would i?

 

[Meetz1064]

OK, I'm

going to chime in again. I have several things to say, and some of them are NOT going to be agreed with.

Yes, KINDLING does occur, that's how the brain learns to seize again and again. Please read up on it.

Reflexive seizures DO occur, quite often, and are based on a variety of different triggers. Whether it be music, food, bowels, colors or the like, they do occur, and they are not necessarily considered psychogenic, either. Especially when the physical aspects are concerned. I know several people with them.

First, my tonic clonics, diagnosed after my mother noticed "staring spells" when I was less than a year old, were classified as IDIOPATHIC, and after the GP induced one in his office, I was IMMEDIATELY put on meds. I had an EEG that day, it found epileptiform activity, and that was that. I've been on meds ever since. Later MRIs found a cyst in my brain, but that wasn't until about 10 years ago.

(Now, keep in mind, I was listed as IDIOPATHIC because there was no damage due to forceps during my birth, no cord wrapped around my neck and no family history that my mother was aware of. However, about 7 years later, she found out that there WAS a family history, and that I am probably a HEREDITARY E patient.)

My EEGs, however, have stayed CLEAR until 4 years ago, although I have had plenty of seizure activity in between---close to 50 t/c's. And the damage to my body from them is irreversible. I have broken almost every bone in my body from them, including my spine. Several times. These are NOT pseudoseizures. I do NOT remember anything, I cannot respond to anything, and I am unable to recover and be useful for at LEAST 2 days.

Over time, as I experienced deja vus as a kid, and then had my E worsen when I married and became pregnant six times, and suffered 3 miscarriages, I have developed MORE types of E. Yet, they didn't all start to show up on the EEGs until 4 years ago. Yet, I had numerous witnesses to them--including doctors, neurologists, nurses and paramedics, all of whom I scared the living wits out of, my seizures are so very violent. I REPEAT, THAT DOES NOT MAKE THEM pseudoseizures.

For me, stress, lack of sleep, and lack of meds are my major triggers. And, on top of that, gluten and dairy, as I am also a celiac patient.

At the beginning of the year, I was diagnosed with 2 more types of seizures, for a grand total of 4 types. Tonic clonic (44 years), myoclonic (8 years), electrographic & focal seizures based in the left frontal lobe (less than a year). Both the tonic clonic and myoclonic are focused too deep to get a good hold of where the focus actually is, and the damage is so bad to my body, AND my memory, that I REFUSE to go off my meds to have a t/c. It takes me YEARS to rebuild the memories that I lose from them.

Originally Posted by Rach_nc1984 View Post:
I tried my hardest but I just cant seem to give myself one. DAMN!!!

That statement is flat-out RUDE. I'm offended.

Have a good day.

Meetz
:rock:

 

[RobinN]

Seems to me, that if you can control emotions that you could also create an emotional environment that could perhaps bring on seizures
http://www.coping-with-epilepsy.com/forums/f22/epilepsy-triggers-516/

Starting at this post, we had a short discussion about cyclical thoughts. Another consideration for thoughts prior to a seizure. Not a clinical research trial, but observed by those in the discussion:
http://www.coping-with-epilepsy.com/forums/f23/epilepsy-linked-creative-ability-3734/#post34095

Rach - I apologize if you have taken offense to anything that I have written here at CWE. I do not mean to come off as rude. I am a mom of a child with a seizure disorder. I came to CWE for support, knock around ideas, and to find answers. I found some and searched for others. I share what I can, and what works for us.

My daughter's quality of life is much better since I have questioned some of the current methods of dealing with seizures. I am glad that you have found your answers from the doctors that have come into your life.

Are we out of the woods yet? No. Will I continue to search for answers? Yes

 

[Chris515]

AAlso during psychogenic seizures the person can be asked to remember something, asked to do something and they are able to. For example, the guy that I know that is diagnosed with psychogenic seizures...One time my friends and I gave him some false information to see if he would use it in one of his seizures. We suggested that he should remember something from it. So during one of his episodes, I sang a kids song and lo and behold he remembered it. He also ended up in the hospital and nurses were asking him to squeeze their hand (something that someone who is having a real seizure could not do.) .

I have had seizures that you would classify as psychogenic. I was not able to remember things, squeeze hands, etc.

The fact that it happened to this guy you know doesn't mean that applies to everyone.

In my opinion seizures caused by smelling burnt rubber, remembering something or thinking about past seizures etc are indeed real seizures.

 

[Meetz1064]

Cint,

I am sooooo very sorry that you went through that kind of nonsense. No one should EVER go through that kind of ****. Really. You have my heartfelt condolences on that.

((((HUGS))))

Meetz
:rock:

 

[epileric]

I am not convinced of the kindling idea. I will do aome more research on it later today and come back.

http://en.scientificcommons.org/19629199

http://cercor.oxfordjournals.org/cgi/content/abstract/bhh041v1

 

[epileric]

My sarcastic comment was meant to be funny. I am in general a sarcastic person. Not to the point of being obnoxious, but it is just the sense of humor I have. I know that not everyone I know is going to think a sarcastic remark I make is funny. Different people have different senses of humor. Anyways....No big deal.

At a dinner party if somebody trips someone I"m sure a couple of people would laugh. However, just because that is someones sense of humour does not make it appropriate at a dinner party.

Please understand that just because you find it funny does not stop it from being offensive to others and that it disturbs the ambiance at this party.

 

[Rae1889]

Brain waves on an EEG also look perfectly normal if the seizures are too deep within the brain, or when no seizure activity occurs while on the EEG.

Diagnosis
The differential diagnosis of PNES firstly involves ruling out epilepsy as the cause of the seizure episodes, along with other organic causes of non-epileptic seizures, such as syncope, migraine, vertigo, and stroke, for example. However, it is important to note that between 10-30% of patients with PNES also have epilepsy. Frontal lobe seizures can be mistaken for PNES, though these tend to have shorter duration, stereotyped patterns of movements and occurrence during sleep.[1] Next, factitious disorder (simulating seizures via unconscious processes for psychological reasons) and malingering (simulating seizures intentionally for secondary gain such as compensation or avoidance of criminal punishment) are excluded. Finally other psychiatric conditions are eliminated which may superficially resemble seizures, including panic disorder, schizophrenia, and depersonalisation disorder.[1]

A experienced clinician is often able to make the diagnosis from a careful history, but the most conclusive test to distinguish true epilepsy from PNES is long term video-EEG monitoring, with the aim of capturing one or two episodes on both videotape and EEG simultaneously (some clinicians may use suggestion to attempt to trigger an episode). Conventional EEG may not be particularly helpful because of a high false-positive rate for abnormal findings in the general population, but also of abnormal findings in patients with some of the psychiatric disorders which can mimic PNES.[1]

Following most tonic-clonic or complex partial epileptic seizures, blood levels of serum prolactin rise, which can be detected by laboratory testing if a sample is taken in the right time window. However, due to false positives and variability in results this test is relied upon less frequently.[1]

Distinguishing features
Some features are more or less likely to suggest PNES but they are not conclusive and should be considered within the broader clinical picture. Features which are common in PNES but rarer in epilepsy include: biting the tip of the tongue, seizures lasting more than 2 minutes, seizures having a gradual onset, a fluctuating course of disease severity, the eyes being closed during a seizure, and side to side head movements. Features which are uncommon in PNES include automatisms (automatic complex movements during the seizure), severe tongue biting, biting the inside of the mouth, and incontinence.[1]

If a patient with suspected PNES has an episode during a clinical examination, there are a number of signs which can be elicited to help support or refute the diagnosis of PNES. Compared to patients with epilepsy, patients with PNES will tend to resist having their eyes forced open (if they are closed during the "seizure"), will stop their hands from hitting their own face if the hand is dropped over the head, and will fixate their eyes in a way suggesting an absence of neurological interference. [1] Mellors et al warn that such tests are neither conclusive nor impossible for a determined patient with factitious disorder to "pass" through faking convincingly.

Risk factors
Most PNES patients (75%) are women, with onset in the late teens to early twenties being typical. [1] PNES patients often have a history of multiple vague, unexplained medical problems and may have a psychiatric condition such as major depressive disorder or an anxiety disorder. A number of researchers have identified abnormal personality traits or full-blown personality disorders in patients with PNES such as borderline personality. The presence of these personality disorders, often related to a trauma in childhood, has led to researchers postulating that PNES may be an expression of repressed psychological harm in response to trauma such as child abuse. Over-emphasising these theories to patients may lead to false memory syndrome so they should be introduced delicately. Other traumatic experiences such as bullying in adulthood, learning disabilities, or adverse family dynamics may also be important pre-disposing or maintaining factors. [

This is taken from Wiki.

 

[Aubrey]

Honestly, I have been curious to try neurofeedback (which my epileptologist has never mentioned), my friend's mother wants me to talk to my doc about VNS ( which has been mentioned in passing), my epileptologist wants me to have a MEG scan done in case I decide to have surgery (which seems less and less appealing and I don't think my insurance will cover enough for me to afford the scan let alone surgery), acupuncture was a neutral, a homeopathic doctor nearly killed me, and I am at a point where I am afraid to risk what stability I do have . . . . Every time something sounds really risk-free, there's always someone it doesn't work for, in a really big way.

 

[skipio]

Totally agree. Think very hard before you have neurotherapy. I think I have wrecked my family. Both kids dropped out of university this week. They have lost all spark and creativity. The youngest upon leaving school, was accepted into the top two drama schools in the country (one was the top drama school in the English speaking world), but they asked her to defer for a year to gain some maturity. What they picked-up on was that she had a tendencey to depression. I put her into neurotherapy and next year she didn't make the first round of anything. She went to a lesser shcool she gained entry to the first year but now she has dropped out. She has no feelings for acting at all. Her passion no longer exists. Same with me. I walk into my studio and look at the incomplete paintings on the wall, which were in progress before I did neurotherapy, and I can't undertand why I started them. I no longer read, take an interest in the world, I find myself watching day time TV. This from somone who was a lecturer in Politics and a graduate director of one of the world's best film schools. I was also dux of art school. I can't draw anymore. Also all three of us are suffering from failing health. My oldest has chronic pins and needles, and I am in universal pain. We used the lens system.

I warn you all, unless you are desperate don't do it. If your life is in danger or it is unbearable them maybe it is an option BUT IT WILL CHANGE YOUR BRAIN. I hardly recognise myself. I have left all my peers groups because I no longer fit with them. I am finding it difficult to find a way to go on.

 

[Ruth]

Hi skipio, you need to talk to Robin and Bernard about neuropathy. There is a thread on it here. Usually, you only go once a week. Maybe you had an unqualified person doing it. It works great on so many people with epilepsy.

You have not wrecked your family. It sounds like they are old enough to make their own decisions. Maybe you should have a talk with them and educate them about epilepsy.

I would not have surgery if I were you until you straighten things out with your family.

I had epilepsy when I had children. I educated them about epilepsy.

VNS is in the thirds, one-third it works great on, the second-third it does not work on very well, just sometimes, the 3rd third, it does not work on at all. Do some research on it. I refuse to have it or surgery. Just my personal opinion.

I do research on any procedure a doctor recommends. You should do the same.

Welcome to CWE, it was started by Bernard out of love for his wife Stacy. She has epilepsy. That love permeates throughout the whole forum.