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Unread 08-11-2009, 09:06 PM   #11
Hockey
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Default Much to consider

Thank you to both dominant participants for this vigorous exchange. Living out in the sticks, I hadn't even heard of these alternative approaches.

I'm going to consider everything I've just read. However, I'm skeptical by nature. As much as I want a cure, I know there are a lot of people out there hoping to profit from our misfortune and desperation. On the other hand, I must acknowledge that my TBI can make my thinking rigid, and not close myself to new and/or contrary ideas.

The only thing that is clear to me is that I need to learn a lot more about my condition and its possible treatments. Of course, memory and attention problems make that a bit difficult. I am amazed by the capacity of some TBI posters to research and write long, organized missives. What did you guys do before you were injured?
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Unread 08-11-2009, 11:52 PM   #12
Mark in Idaho
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Hockey,

I have been dealing with my life changing injury since 1965. Since 2001, I can no longer drive, nor work gainfully, so I have a lot of time to spend sitting at the computer. Early on, I was slowly putting together a Workers' Comp claim and later a SSDI application. It took three years to get SSDI and I never did get anything out of Work Comp because I was unable to find an attorney to take an MTBI case on a contingency fee.

In 2001, there was very little good information on-line. so I spent a small fortune on books.

I graduated from high school with honors and intended to go on to dental school to become an orthodontist. I quickly learned that my brain injured mind would not be able to compete successfully to a spot in dental school.

I kept having decompensations (relapses) that severely affected my ability to memorize school work and focus during the stress of tests. I had a similar experience in 10th grade when I had a bad decompensation. It took 18 months to recover from the effects of heading the ball at soccer practice.

Since then, I have learned how to pace myself and research without overloading my brain. I spent my life saving seeking a proper diagnosis and possible treatment.

I have learned that contrary to what the neurologists say, very few PCS/MTBI sufferers ever recover fully, less than 10%. Even they will have small deficits under stressful circumstances. Those who do best after PCS/MTBI do so because they have accepted their injuries and learned how to work around their limitations, work with their limitations, and basically adapt their lives to their present condition.

I have also learned that very few physicians have a true understanding of the long term prognosis from PCS/MTBI. Just because the patient does not show up in their office after a few weeks or months does not mean they recovered fully.

My wife can look back at our 29 years of marriage and identify all of my symptoms and setbacks, now that she fully understands PCS/MTBI. Before, she just considered me to be one who got irrational or moody or whatever. Now, she can identify my struggles by the look in my eyes.

For me, writing on the computer is just about my only way of communicating. I have such poor short term and immediate memory skills (bottom 5% to 12% of the population) that I get all mixed up trying to talk at length. When I am on the computer, I can reread what I have typed to keep track of my thoughts. My IQ is still very much intact and in the top 2% of the population. This is the only way I can utilize my intelligence and knowledge.

As one who has spend almost $30,000 of my own money ( plus a fair share of my health plans money too) trying the various diagnostic and therapy systems, I have put my own money where my mouth is. I have developed a keen sense of how the charlatans present their programs. With 40 plus years experience with head injury caused dysfunctions, I can quickly identify the symptoms and causes.

The biggest lie about head injury is "'give it time, you will get better." Those who do not spontaneously get better over the first few weeks or months will most likely be prone to long term dysfunctions and decompensations.

I learned in 1976 that I needed to limit stress in my life. I have turned down opportunities to make BIG money because I knew the stress load that came with the opportunities.

Yet, I provided for a family of five in one of the most expensive places to live in the US, San Jose/Silicon Valley, CA where houses cost two to three times as much as the rest of the country. And, I did it without my wife having to work. My wife finally started working in February 2009 to supplement my meager SSDI check.

All this to say, I have paid my dues. I know what I am talking about. I been there, done that, even wrote a report about 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 100 mgs of 5-HTP AM, 500 mgs of L-Tryptophan at noon.

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 08-12-2009, 06:08 AM   #13
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Hi Hockey,

Glad to hear that you learned something about the alternative therapies. In case you were wondering, a lot of the therapies I have mentioned have been around for years. Neurofeedback, which has been proven scientifically to work for brain injuries, has been around since the 1970's. One of the reasons why neurofeedback was never accepted by the medical community is because everyone thought the brain didn't have the capacity to change. Only recently, with the discovery of brain plasticity (the ability to grow new neurons and change the physical/chemical makeup of the brain) is the medical community beginning to accept neurofeedback as a viable treatment (As a side note, it is comical to the neurofeedback community that scientists have only recently discovered brain plasticity since neurotherapists have been telling the medical community for 20 years that the brain has the ability to change and heal itself). Other therapies that I have mentioned have also been proven to work in studies done in Europe and Asia.

If you do decide to pursue neurofeedback or any other therapy, you should be very skeptical of the therapists. The therapies work, but they are only as good as the person administering the therapy. Make sure that the therapist has extensive experience treating persons with head injuries as we can be a bit more difficult to treat than the non-head injured population. You should also be aware that there really isn't a "cure" for head injuries (at least not yet, but maybe in 5 years or so there will be), just as there aren't cures for a lot of diseases that plague mankind. However, your goal is to get yourself to a point where you can function in society again. I myself am attending graduate school this fall. However, even though I was able to get myself to a point where I could handle graduate school, I will still need accommodations to get through, such as getting more time to complete tests, sometimes having an extra day to turn in assignments, tape recording lectures, etc...but, I digress.

So, good luck in your quest to heal yourself. Remember, scientists have studied the placebo effect and discovered that it actually works, so keep a positive attitude.



Quote:
Originally Posted by Hockey View Post
Thank you to both dominant participants for this vigorous exchange. Living out in the sticks, I hadn't even heard of these alternative approaches.

I'm going to consider everything I've just read. However, I'm skeptical by nature. As much as I want a cure, I know there are a lot of people out there hoping to profit from our misfortune and desperation. On the other hand, I must acknowledge that my TBI can make my thinking rigid, and not close myself to new and/or contrary ideas.

The only thing that is clear to me is that I need to learn a lot more about my condition and its possible treatments. Of course, memory and attention problems make that a bit difficult. I am amazed by the capacity of some TBI posters to research and write long, organized missives. What did you guys do before you were injured?
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Unread 08-12-2009, 08:34 AM   #14
mhr4
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Hello Concussed Scientist,

I rather like that name since I was a scientist myself a few years back. Regarding the differences between the pROSHI and LENS, well I could be typing all day to tell you that. However, I'll give you a very quick and simplified version on the differnces.

The LENS is an advanced form of feedback that introduces a small magnetic current into your brain -about the strength of your wristwatch. It finds the frequency that you are good at producing and introduces that frequency into your brain - usually it is the alpha frequency. For reasons I don't understand because I don't have a math or physics background, your brain begins to change and the EEG normalizes. The LENS is probably the best neurofeedback device to treat brain injuries. If I had a practioner in my area, I would definitely spend the money to go there. Also, it requires a lot fewer sessions, so you save some money as well. Make sure your practioner has a lot of experience though, this is very complicated technology. http://www.ochslabs.com.

The pROSHI is also considered an advanced form of neurofeedback, and is considered one of the best therapy techniques for brain injuries as well. You simply put on photo stim glasses that introduce different frequencies into the brain and the brain attempts to lock on one of the frequencies. It can't, so it then goes into a restful state. Again, this is an over simplified version of what really happens. It is called dissentrainment. I have one of these and I like it because it is very convenient to use. I can use it wherever I am. So, if I have a decompensation episode, I can pull it out, use it for about 30 minutes, and I'm right as rain. The only caveat is that it does take your brain a long time to lock in the changes. So, you may have to use it for a year or two before your brain does finally lock in the changes. However, until then, the changes usually last for about 15-20 hours. The pROSHI has also been proven to normalize EEG from QEEG tests that were taken while it was being used.






Quote:
Originally Posted by Concussed Scientist View Post
Hi,

Yes, I would be very interested if you could email your results to me. You can attach it to an email in neurotalk.

I am thinking of having a course of neurotherapy treatment called LENS, which uses a neurifeedback device (invented by someone called, "Len", conincidentally - It stands for Low Energy Neurofeedback System)

Does anyone know how PROSHI and LENS work and what are the similarities and differences between them?

Concussed Scientist
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Unread 08-12-2009, 05:03 PM   #15
Mark in Idaho
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Default neurofeedback

mhr4 *edit* says
<You should also be aware that there really isn't a "cure" for head injuries (at least not yet, but maybe in 5 years or so there will be),>

There is no such science to show that we will be able to repair head injuries. The stem cell research for head injuries is finding many problems. The brain in far more complex that a kidney or skin tissue. This science is decades away.

*edit*

I have steps I take to quickly recover from a decompensation. Some times, I can recover in a short time (hour or two). Other times, the decompensation is far more complex and will take more time (days). I have learned how to moderate my environment so that I rarely have the complex decompensations.

The pROSHI is working on a very narrow part of the brain that is accessible through the visual pathways. Modifying the waveform in these pathways have not been shown to modify the waveform in the other brain pathways. As she says, It only works for 10 to 20 hours. The developer claims it just causes a relaxation of the aberrant waveforms.

If you read about the ROSHI and pROSHI and the web site http://www.neurodynamicactivator.com...es/Page345.htm
you will see that the description is 'Excerpted from “Handbook of Neurofeedback” By James R. Evans, Phd '

It talks more about the EM stimulation (Electro-Magnetic) that the light therapy. The pROSHI does not use any sort of feedback technique. It has a chaos oriented program if light timing that has not connection to any realtime QEEG waveforms.

*edit* If you have the money to spend, maybe it is worth a try. $1995 is a good chunk of change.

The pROSHI is a preset system. The therapist does nothing to modify its function for a brain injured patient.

I still take great exception to the claim that LENS and ROSHI/pROSHI is "non-invasive." When the system creates the stimulus by light or EM means, that is invasive. Where is the line separating ECT (electro convulsive shock therapy) from EM stimulating therapy?

Even Davis has admitted that the EM stimulation caused some undesired side effects. I am confused when he connects EM to light as in "Light of EM waves ae presented to the client in a standardized complex (adaptive) mode as mentioned earlier for purposes of entrainment/disentrainment."

Further, he states "Therefore, the pROSHI uses the very advanced concept that the brain itself can become its own neurofeedback device, correcting its own internal errors, given the proper external (proprietary) neurostimulus."

This proprietary claim is confusing. Why is it not patented or protected by US "trade secret" provisions. Sounds like a very low tech company is making some very high tech claims.

Conscious active patient neuro-feedback is non-invasive because it requires the conscious effort of the patient to effect the waveforms. This is a very common form of neurofeedback. It helps the patient to recognize the improper wave forms and adjust, by conscious effort, the focus of the brain. The patient trains using the QEEG brain mapping system and learns how to moderate (reduce) the over powered wave forms by/and increase the underpowered wave forms.

Finding a good neurotherapist with extensive experience with QEEG based neurofeedback for brain injury is important. Most neurofeedback is oriented for the ADD/ADHD student or the athlete trying to maximize his performance. The malfunctioning brain requires a variety of patient efforts to bring the improper wave forms into proper function, if it can be done. Some brains have damage that is not repairable because the usable neural pathways are limited.

Think of the brain's neural pathways like an 88 key piano keyboard. Just to simplify things, I will use simple numbers. 22 keys are the auditory pathways. 22 keys are the visual pathways. 22 keys are the tactile (touch) pathways. 22 keys are the cognitive (thinking) pathways. If any of those keys are damaged, the brain will try to use underused keys from a neighboring pathway system. If the eyes do not work, all of the visual keys become available. This is how the blind get such highly developed auditory and tactile skills. This reassignment of pathways is called neuroplasticity.

The ability of the brain to 'grow' or 'heal' damaged pathways is still not understood. Some believe that the underused pathways that get redirected to another system manifests as healing or regrowth. This is a presumption. The fMRI (functional MRI) studies show increased metabolism is previously low metabolism areas. This could be new growth, new growth, healing, or just underused brain cells getting put into greater service by the brain.

Most neurofeedback tries to encourage these underused pathways to become more functional (rewired). Some people have a greater reserve of underused neural pathways and can quickly turn on these underused pathways. The studies show that this 'rewiring' can happen in as little as 24 to 48 hours.

One of the problems neurophysiology scientists are trying to understand is the suicide tendency of neural pathways. They have observed that right after a brain injury, the fMRI may show weak metabolism or perfusion in a specific damaged area. After some time has elapsed. the damaged areas appear to have shut down. They attribute this to tRNA (transmitting RNA tells cells how to function along a chain of cells) being released that target the malfunctioning cells and pathways to shut down (die). It appear that a margin of weak cells around the more seriously damaged cells also shuts down.

This is the focus of early intervention with stroke victims. Restoring perfusion (blood flow) to the damaged area can lessen this shut down mechanism and lead to better recovery potentials. Even then, rehabilitation therapy is often required to force signals along the weakened pathways or around the damaged pathways based on the concept of neuroplasticity.

Will stem cells help with this problem? The jury is still out. The blood brain barrier gets in the way of getting the stem cells to the damaged areas. If they can program stem cells to grow the vascular structures and brain cells as they would in an infant or small child, this may be possible. It is a long way off. Currently, they are just trying to get stem cells to grow in the brain without causing damage.

btw, I have about a six inches stack of the abstracts of the leading QEEG/neurofeedback studies.

Remember, It is your money to burn by your own choice.
__________________
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 100 mgs of 5-HTP AM, 500 mgs of L-Tryptophan at noon.

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

Last edited by Koala77; 08-12-2009 at 11:05 PM. Reason: NT guidelines
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Unread 08-13-2009, 02:34 AM   #16
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OK Mark, well that is just your opinion. Ya really have got to lay off my postings though. I am getting really tired of having to correct your misinformation. I find it interesting that you are so quick to dismiss therapies you yourself haven't even tried. I mean, you spend 10 minutes researching the pROSHI and all of a sudden you are an expert on the subject? Give me a break.

And we all get that you don't believe in alternative therapies or stem cell research for head injuries. That's fine, no one is forcing you to do these therapies or believe in them. But for everyone else who has done these, and had them work, or who believes in them, let them be. Two things I learned from being a researcher is that we know very little about the nervous system, and that there are two sides to almost everything. There are research articles that have shown stem cell therapy to be very useful in head injured rats and articles that have shown it to be useless. The same goes for the other therapies I have listed, and others have listed as well.

I don't understand why you think it is necessary to nit pick just about every post that I make. My only goal here is to offer people information and choices as objectively as possible. I let them decide whether or not they want to do it by researching it themselves. You act as though this is a scientific forum and we are all trying to show how smart we are, or are trying to advertise our own products. Believe me, I've been on these and this is usually what happens between two people. Well, I'm not interested in doing that. This will be the third time I have asked you to please stop doing this. Again, if you don't believe in the therapy, please just ignore it and move on. I mean really, this is getting ridiculous.




Quote:
Originally Posted by Mark in Idaho View Post
mhr4 *edit* says
<You should also be aware that there really isn't a "cure" for head injuries (at least not yet, but maybe in 5 years or so there will be),>

There is no such science to show that we will be able to repair head injuries. The stem cell research for head injuries is finding many problems. The brain in far more complex that a kidney or skin tissue. This science is decades away.

*edit*

I have steps I take to quickly recover from a decompensation. Some times, I can recover in a short time (hour or two). Other times, the decompensation is far more complex and will take more time (days). I have learned how to moderate my environment so that I rarely have the complex decompensations.

The pROSHI is working on a very narrow part of the brain that is accessible through the visual pathways. Modifying the waveform in these pathways have not been shown to modify the waveform in the other brain pathways. As she says, It only works for 10 to 20 hours. The developer claims it just causes a relaxation of the aberrant waveforms.

If you read about the ROSHI and pROSHI and the web site http://www.neurodynamicactivator.com...es/Page345.htm
you will see that the description is 'Excerpted from “Handbook of Neurofeedback” By James R. Evans, Phd '

It talks more about the EM stimulation (Electro-Magnetic) that the light therapy. The pROSHI does not use any sort of feedback technique. It has a chaos oriented program if light timing that has not connection to any realtime QEEG waveforms.

*edit* If you have the money to spend, maybe it is worth a try. $1995 is a good chunk of change.

The pROSHI is a preset system. The therapist does nothing to modify its function for a brain injured patient.

I still take great exception to the claim that LENS and ROSHI/pROSHI is "non-invasive." When the system creates the stimulus by light or EM means, that is invasive. Where is the line separating ECT (electro convulsive shock therapy) from EM stimulating therapy?

Even Davis has admitted that the EM stimulation caused some undesired side effects. I am confused when he connects EM to light as in "Light of EM waves ae presented to the client in a standardized complex (adaptive) mode as mentioned earlier for purposes of entrainment/disentrainment."

Further, he states "Therefore, the pROSHI uses the very advanced concept that the brain itself can become its own neurofeedback device, correcting its own internal errors, given the proper external (proprietary) neurostimulus."

This proprietary claim is confusing. Why is it not patented or protected by US "trade secret" provisions. Sounds like a very low tech company is making some very high tech claims.

Conscious active patient neuro-feedback is non-invasive because it requires the conscious effort of the patient to effect the waveforms. This is a very common form of neurofeedback. It helps the patient to recognize the improper wave forms and adjust, by conscious effort, the focus of the brain. The patient trains using the QEEG brain mapping system and learns how to moderate (reduce) the over powered wave forms by/and increase the underpowered wave forms.

Finding a good neurotherapist with extensive experience with QEEG based neurofeedback for brain injury is important. Most neurofeedback is oriented for the ADD/ADHD student or the athlete trying to maximize his performance. The malfunctioning brain requires a variety of patient efforts to bring the improper wave forms into proper function, if it can be done. Some brains have damage that is not repairable because the usable neural pathways are limited.

Think of the brain's neural pathways like an 88 key piano keyboard. Just to simplify things, I will use simple numbers. 22 keys are the auditory pathways. 22 keys are the visual pathways. 22 keys are the tactile (touch) pathways. 22 keys are the cognitive (thinking) pathways. If any of those keys are damaged, the brain will try to use underused keys from a neighboring pathway system. If the eyes do not work, all of the visual keys become available. This is how the blind get such highly developed auditory and tactile skills. This reassignment of pathways is called neuroplasticity.

The ability of the brain to 'grow' or 'heal' damaged pathways is still not understood. Some believe that the underused pathways that get redirected to another system manifests as healing or regrowth. This is a presumption. The fMRI (functional MRI) studies show increased metabolism is previously low metabolism areas. This could be new growth, new growth, healing, or just underused brain cells getting put into greater service by the brain.

Most neurofeedback tries to encourage these underused pathways to become more functional (rewired). Some people have a greater reserve of underused neural pathways and can quickly turn on these underused pathways. The studies show that this 'rewiring' can happen in as little as 24 to 48 hours.

One of the problems neurophysiology scientists are trying to understand is the suicide tendency of neural pathways. They have observed that right after a brain injury, the fMRI may show weak metabolism or perfusion in a specific damaged area. After some time has elapsed. the damaged areas appear to have shut down. They attribute this to tRNA (transmitting RNA tells cells how to function along a chain of cells) being released that target the malfunctioning cells and pathways to shut down (die). It appear that a margin of weak cells around the more seriously damaged cells also shuts down.

This is the focus of early intervention with stroke victims. Restoring perfusion (blood flow) to the damaged area can lessen this shut down mechanism and lead to better recovery potentials. Even then, rehabilitation therapy is often required to force signals along the weakened pathways or around the damaged pathways based on the concept of neuroplasticity.

Will stem cells help with this problem? The jury is still out. The blood brain barrier gets in the way of getting the stem cells to the damaged areas. If they can program stem cells to grow the vascular structures and brain cells as they would in an infant or small child, this may be possible. It is a long way off. Currently, they are just trying to get stem cells to grow in the brain without causing damage.

btw, I have about a six inches stack of the abstracts of the leading QEEG/neurofeedback studies.

Remember, It is your money to burn by your own choice.

Last edited by mhr4; 08-13-2009 at 02:15 PM.
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