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adverse reactions in neurofeedback

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Unread 11-09-2009, 11:26 PM   #1
lopi
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Default adverse reactions in neurofeedback

I decided I was going to have LENS Neurofeed back Therapy. I researched and read the books and I really thought I had found my answer everything I read really explained everything I was suffering from.
I have PCS from a Motorcycle accident 4 years ago and have been having sensory problems, sezuires, dry heaves, and not functioning at all have not been able to work, or do dinners, travel everything I used to do.
I received my first treatment last week; I traveled to Vancouver to see a DR. that specilizes in Brain injuries and talked to him several times. I had a brain map on Monday which even that made me feel off, but I just thought it was all the noise in Vancouver (very noisy city) and had my LENS treatment on Tuesday. I really thought that was so simple I did not feel that much and the treatment itself took just a minute it took more time to put the cap and the sensors on than the actually treatment and when it was over we did some deep breathing and a short meditation. How could anything so non invasive do any harm.

I took the train up from Seattle first mistake, but on the way home I had to get off at the first stop I had 2 seizures on the way home and really thought I was not going make it.

So by the time I got home I was so tried I went to bed and I slept for 14 hours I could not wake up. That happens sometimes after a seizure and I had to stay in bed all day.

The next day I had to go to town and I was not gone for more than an hour and I was so overwhelmed I was dry heaving and tried I had to lay down.
The rest of the week I felt like I was having an outer body experience I was so disconnected I was in no condition to drive or go anywhere I tried to talk on the phone but I could not form sentences together just very spacey. By Sunday my tics and twitches were back and I was dry heaving all day. I was restless yet if I tried to get up I thought I was going to fall over, it was like my brain said one thing and my body would not follow.

When I was researching LENS the info I saw had no side effects and I thought it was a lot like homeopathic if it did not work it would just pass.

Not until I goggled adverse reactions and side effects in neurofeedback. They include, but are not limited to, anxiety, agitation, panic attacks, manic-like behavior, headaches, nausea, fatigue, sleep disturbance, anger and irritability, crying and emotional lability, incontinence, enuresis, increase in depression, decline in cognitive functioning, increase in OCD symptoms, increase in somatic symptoms, tics, twitches, seizures, slurred speech, loss of previous symptomatic improvements, and temporary disorientation or dissociation.

Which were almost all my reactions. The problem was that my brain is so sensitive and already in hyper mode 24/7 that the last thing it needs is more simulation.
LENS motto is less is more but for people with processing disorders less is way too much. The way I look at is to check that off my list and carry on. Having PCS for several years I know what works and what does not. Gone are the days that I go through a therapy because that was what I thought was necessary to heal.
Listen to your body and learn from it what it needs and not what other people think you need, and never give up. Everything happens for a reason and even if LENS did not work out for me the knowledge I gained from it was worth it.

My new Motto is no more sensory overload
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Unread 11-18-2009, 10:15 PM   #2
mhr4
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So as not to discourage readers from trying the LENS therapy to rehabilitate their brains, I would like to address this posting. I'm not a professional, so take this with a grain of salt and please consult a professional before attempting any neurofeedback protocl.

The reaction that Lopi had to the LENS is actually a very common reaction to have after the first treatment for people with brain injuries. A couple of things factor into this reaction. First, the first couple of sessions are meant to be exploratory sessions to ascertain the correct frequency and site to train. This is not different than when a doctor puts you on a new medication and it takes a while to find the correct dosage for your body. Second, injured brains can be very disorganized and this can result in the brain having to go through a reorganization process that can be quite uncomfortable for the client. This happened to me when I first began doing traditional neurofeedback. My brain had become so stuck in the disregulated patterns that at first it didn't want to budge at all and this would send me into a dizzy of symptoms after I did a session. Eventually though, it did begin become more flexible and I began to get benefit out of the sessions. Third, although I highly doubt this was the case, the practitioner may not have had enough experience or training to be able to accurately train someone with a head injury. I've said all along that neurofeedback is a powerful tool to use in rehabilitating head injuries, however, it is only as powerful as the practitioner using it. That is why it is important to have someone with experience with head injuries treat you.
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Unread 12-31-2009, 05:07 AM   #3
Linda (Mom) in CT
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Default LENS therpay ?

Hi,
I don't understand the reference to LENS therapy? I was looking into the qEEG therapy of Dr. Walker in TX with the neuro-feedback are they the same?

Linda (Mom) in CT
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Unread 12-31-2009, 10:27 AM   #4
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Hi Linda,

They are and aren't the same. They are both forms of biofeedback. With Dr. Walkers method, it is more like traditional neurofeedback where your daughter will try and train down or train up different frequency bands depending on what her QEEG shows. It is QEEG guided because she will most likely have QEEG's done every 4 weeks to ascertain the direction of the neurofeedback. For brain injuries, I normally wouldn't recommend doing this kind of neurofeedback; however, Dr. Walker is one of the best in the country so he would be the exception.

With the LENS, it is still a form of biofeedback because the computer is reading the clients brainwaves to ascertain where the dominant frequency is. Once it ascertains this, it sends a miniscule electromagnetic wave no stronger then what a digital watch puts out into the clients brain that slightly offsets the dominant frequency and flattens the EEG, which is a very good thing. LENS practitioners are harder to find because the equipment and training is very expensive. However, as I mentioned before, this is probably the best method to rehabbing brain injuries because it requires no effort from the client, which can be a problem for brain injured clients. The LENS is also considered an advanced form of neurofeedback and the field is probably moving in this direction.

Another form of neurofeedback that has been effective for brain injuries is called Z score neurofeedback. This exclusively trains coherence and phase relationship issues, which is also a major problem with people who have post concussive syndrome. The type of injury is most likely due to diffuse axonal injury because the brain is not communicating with itself very well, and Z score training helps to train this out for better functioning.


Please keep asking more questions if you have them. If anyone else has experience with this kind of therapy, please chime in.
Also, I would suggest calling Dr. Walker and Len Ochs and ask them your questions. They are both very nice people who would be willing to talk with you. I believe you already have Dr. Walker's URL, so here is Len Ochs URL: http://www.ochslabs.com/.

You may also want to talk with your neurologist or and endocrinologist about using hormone therapy to treat her. I'm not sure if they can with her young age, but it might be worth a discussion.
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Unread 10-01-2010, 05:22 PM   #5
curtz316
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Unhappy I have the same issue as Lopi

Here is a letter I sent to someone a little while back reaching out for help:

"I participated in Neurofeedback treatments for TBI research around early February. I had a strange reaction and haven't felt the same since (it has been 4 months). I ended up testing negative for TBI by the way. The protocol was to start by the practitioner reducing delta waves on the right side and then rewarding the left or something. I told him that I was panicking for some reason at the end of the treatment and all the gauges on the computer where maxed out. I also told him prior to the second session that I was anxious since the first the day before. I only did a total of 2 treatments. He mentioned things were changing up there and it would subside. He trained me for 5-10 minutes too long the second procedure (he openly admitted later on). After the treatment, for the next 4 days or so, I had the worst anxiety attacks of my life (I think they were "partial seizure" attacks). It was off and on constantly with all of the symptoms explained above and many more intensified by 10 fold. It was like a roller coaster ride; calming myself down then off into a meltdown seconds later. Anything from looking at a certain shade of light to just about anything else would set it off instantly. I have been also having head pains/sensations in the area where I was trained on the left back part of my head, going down into the neck area. I also have been having problems with my eyes (floaters, flashes, double vision in left eye sometimes, and more), anxiety, seeing images or faces from shapes in things (example: tiled wall/floor & like looking at the clouds enhanced by 20) I had a CAT scan and a MRI both resulting normal (nothing found except a squiggly vein or something, “an anomaly”). I have been taking Lorazepam (anti-anxiety med w/ anti-seizure traits) for the last 2 months, prescribed by the hospital first and now by my Neurologist who is totally confused. When I went to the hospital my blood pressure was high and I was very nervous/anxious with a lot of pressure in the back of my head. My left eye was dilated along with everything else and that’s why I went. I haven’t taken meds for anxiety (or anything really ever) for about 7 years or more and I never planned on taking them ever again. I really had no choice, it was too much to handle. I am desperate for help and saw that you were experienced in psychology along with Neurofeedback. Can you please give me some guidance on what I should do or who can help me?"

I never did get a response back from this specialist...

Well, it has been almost a year now (3 brain scans later (MRI, CT, then MRA)) and they just found an aneurysm in left rear part of my brain. That's almost exactly where the device was placed. I went to a neurosurgeon and he told me that aneurysms don't produce any symptoms. That can't be right because I have pain/strain everyday in the area that they said the aneurysm is. This treatment completely flipped my life upside down. I know, without any doubt, that this treatment caused an aneurysm, increased my anxiety, permanently damaged my eyes, made my existing symptoms worse, made my brain less optimal than before, and put me into a depression. The Neurofeedback technician denies any of it. If Neurofeedback didn't do it, than the reaction to the Neurofeedback did it (if that makes sense). Not only has this ruined my quality of life in so many ways now and for the future, it is costing me big bucks. I lost my insurance because I was on Cobra and then found someone to take me after being denied twice, but at a ridiculous cost. I am paying over $400/month for health insurance because I have a preexisting condition now. I had a few reported symptoms before, but I was paying about $120/month. I am only 27 by the way. I wake up everyday, tormented from this event, because the pain in my head every morning reminds me. My mental health is degrading and I wish someone would just put a bullet in my head sometimes. I can't even get help with my doctor bills. I would consider sometime of lawsuit, but I called around it is too complicated in so many words. My hands are up in the air. Any advice is much appreciated. Not to say Lopi's last words in his story didn't inspire me.
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Unread 10-01-2010, 11:40 PM   #6
Mark in Idaho
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It sounds to me like the "Research" was more an anecdotal investigation by a clinician. If it was research, you would not be told what they are trying to do or if they did it, etc.

True research is done with the patient in the blind (not aware if their treatment is real or a placebo) and better with the technician in the blind. In your case, blind as to which patient is being treated.

Neurofeedback requires your input where you view a screen and attempt to cause the values to increase or decrease. Another term is Volitional neuro-therapy.

Then there is non-volitional neuro-therapy where the patient just sits and the computer generates some effect to the patient. This may be a specific brand such a ROSHI or LENS.

It sounds like you were more of a guinea pig than a research subject. It also sounds like there may have been an inadequate medical history and psychiatric history taken.

You could start by requesting a complete copy of your records from this clinician. I would also want to have a complete copy/explanation of the protocol and treatment systems/equipment/prior research, etc. .

I would not fault you if you talked to an attorney. You need to understand what they were doing.

My best to you.
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Mark in Idaho

59 years old, retired due to disability, married 34 years, father of three, grandfather of four, Suffered a serious concussion at 10 years old (1965) stopped most driving after concussion at 46 years old (2001), Post Concussion Syndrome/Multiple Concussion/Impact Syndrome with PTSD, immediate/short term visual and auditory memory problems, slowed processing speed, visual/auditory processing difficulties, insomnia, absence seizures, OCD, 14 concussions since first concussion at 8 years old, Taking paroxetine for 14 years and gabapentin for 12 years. Added L-Tryptophan and stopped paroxetine after 3 months of tapering. I currently take 500 mgs of L-Tryptophan AM, 500 mgs noon, and 500 mgs PM.


As of Nov 15th, Due to high stress issues resulting in PTSD, docs put me on 3 meds. Clonazepam but only for 30 days ) .125 mgs twice daily (Doc presc. .25 mgs 2x daily but half a tablet is good) , citalopram (Celexa), an SSRI , and olanzapine (Zyprexa), an atypical anti-psychotic that usually causes weight gain before bed. I lost over 30 pounds since mid July. It just stopped the weight loss. Took me off the gabapentin. I am feeling better than I have in years.

This great feeling only lasted a month. Back to the same old PCS doldrums.

May 2014, I am off the olanzapine due to a 6 fold price increase. Back on 600 mgs of gabapentin before bed.

I am also taking L-Theanine to help with GABA regulation


"Be Still and Know That I am God" Psalm 46:10
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Unread 10-02-2010, 12:11 AM   #7
curtz316
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Quote:
Originally Posted by Mark in Idaho View Post
It sounds to me like the "Research" was more an anecdotal investigation by a clinician. If it was research, you would not be told what they are trying to do or if they did it, etc.

True research is done with the patient in the blind (not aware if their treatment is real or a placebo) and better with the technician in the blind. In your case, blind as to which patient is being treated.

Neurofeedback requires your input where you view a screen and attempt to cause the values to increase or decrease. Another term is Volitional neuro-therapy.

Then there is non-volitional neuro-therapy where the patient just sits and the computer generates some effect to the patient. This may be a specific brand such a ROSHI or LENS.

It sounds like you were more of a guinea pig than a research subject. It also sounds like there may have been an inadequate medical history and psychiatric history taken.

You could start by requesting a complete copy of your records from this clinician. I would also want to have a complete copy/explanation of the protocol and treatment systems/equipment/prior research, etc. .

I would not fault you if you talked to an attorney. You need to understand what they were doing.

My best to you.
He should have definitely done a pre-qualifying with something of such adverse affects and a whole lot more. If I would have known the risk I was taking, of being more vulnerable with my head trauma, I probably wouldn't have done it. I mentioned before the treatment, while preparing myself and doing research about Neurofeedback, that I saw something about seizures while investigating. He asked me if I ever had a seizure, I said "no" because I haven't, then he told me not to worry and it has never happened in his 30 years experience. I tried to get my full records and he won't release them to me. I am running out of energy trying to deal with this crap. It's like every doctor I talk to just can't comprehend this. Half of them look at me like I am out of my mind. The aneurysm is new though.. You would think that anybody that hears this story would have more compassion and understanding. Especially, a neurologist that knows how complicated the brain is. I don't know, maybe that look on their face is their own confusion that I am mistaking for a lack of confidence in me?? I dunno.. Thanks for your fast response Mark in Idaho!!
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Unread 10-02-2010, 11:22 PM   #8
Mark in Idaho
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curtz,

Was this guy a neurologist M.D.? He sure does not sound like it. He is required to provide you a copy of your medical records. It is a requirement of HIPAA.

I would suggest contacting your state/provincial medical examiners board.

What letters does he use behind his name? M.D. Ph.D. LCSW, PsyD, MS, etc. and what board affiliations does he list?

Where in the world are you? USA, Canada, State or Province

In your future posts, it will help many of us read them if you use a paragraph spacing every 5 or 6 lines. I and many others struggle to follow from the end of one line to the start of the next if there are too many lines in a paragraph.

Yesterday, I pasted your post into MSWord and added paragraph spaces so I could read it.
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Mark in Idaho

59 years old, retired due to disability, married 34 years, father of three, grandfather of four, Suffered a serious concussion at 10 years old (1965) stopped most driving after concussion at 46 years old (2001), Post Concussion Syndrome/Multiple Concussion/Impact Syndrome with PTSD, immediate/short term visual and auditory memory problems, slowed processing speed, visual/auditory processing difficulties, insomnia, absence seizures, OCD, 14 concussions since first concussion at 8 years old, Taking paroxetine for 14 years and gabapentin for 12 years. Added L-Tryptophan and stopped paroxetine after 3 months of tapering. I currently take 500 mgs of L-Tryptophan AM, 500 mgs noon, and 500 mgs PM.


As of Nov 15th, Due to high stress issues resulting in PTSD, docs put me on 3 meds. Clonazepam but only for 30 days ) .125 mgs twice daily (Doc presc. .25 mgs 2x daily but half a tablet is good) , citalopram (Celexa), an SSRI , and olanzapine (Zyprexa), an atypical anti-psychotic that usually causes weight gain before bed. I lost over 30 pounds since mid July. It just stopped the weight loss. Took me off the gabapentin. I am feeling better than I have in years.

This great feeling only lasted a month. Back to the same old PCS doldrums.

May 2014, I am off the olanzapine due to a 6 fold price increase. Back on 600 mgs of gabapentin before bed.

I am also taking L-Theanine to help with GABA regulation


"Be Still and Know That I am God" Psalm 46:10
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Unread 10-07-2010, 07:00 PM   #9
curtz316
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Quote:
Originally Posted by Mark in Idaho View Post
curtz,

Was this guy a neurologist M.D.? He sure does not sound like it. He is required to provide you a copy of your medical records. It is a requirement of HIPAA.

I would suggest contacting your state/provincial medical examiners board.

What letters does he use behind his name? M.D. Ph.D. LCSW, PsyD, MS, etc. and what board affiliations does he list?

Where in the world are you? USA, Canada, State or Province

In your future posts, it will help many of us read them if you use a paragraph spacing every 5 or 6 lines. I and many others struggle to follow from the end of one line to the start of the next if there are too many lines in a paragraph.

Yesterday, I pasted your post into MSWord and added paragraph spaces so I could read it.
He is a PHD of EEG I am guessing. He is not a Neurologist, but the man

heading the study is. He wouldn't let me talk with him. I am in FL.
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Unread 10-07-2010, 09:44 PM   #10
Mark in Idaho
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If you will post the names of the Ph.D and M.D. I will try to research them to see what the study is about. Most researchers have an online presence.
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Mark in Idaho

59 years old, retired due to disability, married 34 years, father of three, grandfather of four, Suffered a serious concussion at 10 years old (1965) stopped most driving after concussion at 46 years old (2001), Post Concussion Syndrome/Multiple Concussion/Impact Syndrome with PTSD, immediate/short term visual and auditory memory problems, slowed processing speed, visual/auditory processing difficulties, insomnia, absence seizures, OCD, 14 concussions since first concussion at 8 years old, Taking paroxetine for 14 years and gabapentin for 12 years. Added L-Tryptophan and stopped paroxetine after 3 months of tapering. I currently take 500 mgs of L-Tryptophan AM, 500 mgs noon, and 500 mgs PM.


As of Nov 15th, Due to high stress issues resulting in PTSD, docs put me on 3 meds. Clonazepam but only for 30 days ) .125 mgs twice daily (Doc presc. .25 mgs 2x daily but half a tablet is good) , citalopram (Celexa), an SSRI , and olanzapine (Zyprexa), an atypical anti-psychotic that usually causes weight gain before bed. I lost over 30 pounds since mid July. It just stopped the weight loss. Took me off the gabapentin. I am feeling better than I have in years.

This great feeling only lasted a month. Back to the same old PCS doldrums.

May 2014, I am off the olanzapine due to a 6 fold price increase. Back on 600 mgs of gabapentin before bed.

I am also taking L-Theanine to help with GABA regulation


"Be Still and Know That I am God" Psalm 46:10
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