Recovery/success stories with you guys?
 

Hey guys. It's me again. Just been trying to cope with PCS and checking the boards.

Sometimes trying to live a a relatively normal life with PCS can be a pain, sometimes it feels like there's going to be a long road ahead of me. Sometimes it feels like I have a lot on my plate and I can't comprehend the bigger picture.

But life is never too bad! Just celebrated Valentine's Day with my girlfriend, and I realize that there are people who still love me, and I'm lucky for that. Sometimes I think "Well, I lost my mind, but I found my heart."

Hmm, kinda pointless so far. Well, I got a question for you guys:

A lot of you have been dealing with PCS for a long time, I want to know that has there been times where you've woken up to realize you've gotten a little bit better?

Have there been times where you've done something, remembered something, that you wouldn't of if it was months or years ago?

Have you accomplished something great thanks to therapy?

Have you conquered any particular symptoms that plagued you?

Hey, Eddy! Just yesterday my 15 yr old daughter (6 1/2 months PCS) was working on some homework and said, "Oh...I get this now...duh" So I think that's a great improvement. And I'm seeing her quick wit and sarcasm coming back. She cares enough to be sarcastic, which I suppose is good. We aren't that far into it in comparison to lots of people, and she still has some headaches and concentration/memory issues, but I do see some improvements.

I love that you mentioned realizing that Valentine's Day with your gf was a great thing. I've seen new and beautiful friendships blossom for my daughter. Her old "friends" were mostly related to sports. They have sort of fallen away, but she's had a couple of new people, who I think will be life-long friends, step in. She and I are finding a few new, fun dimensions to our relationship. I would say she has also "lost her mind but found her heart" in some respects. Her own sense of compassion has grown immeasurably.

Mark mentioned to me some time ago to try to appreciate more simple things with her. At the time I was frustrated and it wasn't easy to take his advice. Now I'm seeing how right he was. If she wants to spend the afternoon building a ramp for her slinky, there's nothing wrong with it. In fact I've realized that kind of thing is allowing her brain to think in new and different ways than her pre-injury lifestyle would have allowed. She finds great fun in playing with our dog now, who she virtually ignored before.

So...short answer...no dramatic "I'm healed" moments. Just very, very slow and gradual improvements in all of her symptoms. We are insanely, giddily, over the top thankful for each and every one of those improvements. Right now my husband and I tell each other, almost daily, if she never gets any better than this she will still be able to live a full life. What else could we possibly ask for?

Many of the 'improvements' are due to us finally finding a new way to do something. When we have finally let go of the old self, we get an opportunity to experience the capabilities of the new self.

I have had many improvements in my condition. Most I believe are due to finding these new ways to do things. When I try to do things the old way, the symptoms/struggles pop up in an instant without an prior warning.

It is this 'change of ways' that enables the improvement to manifest.

Dr Schutz explains these brain injury moment fixes quite well. He suggests that they are part of a lifelong willingness to work with out struggles, not against them.

His book (available online for a free download at www.givebackorlando.comis a valuable resource.

Slow but great recovery
 

I have just begun to start feeling a bit more normal over the last month. (This is over two years after a concussion.) I am really feeling pretty good about it at the moment. It is a real relief to have got this far.

It isn't that I got up in the morning and felt better than the day before. I don't notice anything different on that time scale, but if I go back to this time last year then there has been a huge improvement. A diary can help you to notice the changes. It is natural the focus on what is still wrong and wish that remaining symptoms would go away, but if I look back then I can see that there are a lot of things that have definitely improved a lot.

To mention one symptom in particular, I don't feel dizzy anymore! At least hardly at all. There was definitely something wrong in that department. I had a tendency to veer off to one side when I was trying to walk in a straight line, and I felt dizzy. It improved steadily for about 6 months but then I seemed to plateau. I didn't think that there was any improvement at all for more than a year. But now, I definitely notice that I don't notice it any more. That is the nearest thing that I have to waking up one morning and being better. I suppose I was concentrating on other symptoms and thinking that the dizziness wasn't changing at all. But it must have been because now I realize that the dizziness has almost gone.

All my other symptoms have gradually improved as well.

Mark -

I've been reading the book you suggested, and it seems it is more geared towards memory losses. i.e. how to train your brain to find alternate ways to remember things, writing things down etc. However, he does not touch on the emotional and visual problems associated with TBI. You can't simply train your brain to ignore piercing migranes or extreme fatigue. Can the brain repair these things on it's own? What did I miss in this manuscript?

Baseball,

Therapies like neurofeedback, vision therapy, vestibular therapy, etc. aim to improve functioning in the areas you listed, plus they restore cognitive functioning as well. There has even been research that demonstrated a 60-70% reduction in symptoms after undergoing these therapies. So, it seems that with the help of various therapies, the brain is able to repair these things on its own.

About how long after the injury should pass before considering these options? Should it be started immediately, or wait and if the symptoms don't heal on their own, then look into treatment?

The answer to this is debatable. Some doctors say wait 6 months to let the brain naturally heal itself within this time period. Others say right away to augment any healing that will take place. In my opinion, I would start right away.

There are two distinctly different kinds of symptoms that need addressing.

There are psychological symptoms and physiological symptoms.

Trying to mix the two can get confusing.

Vestibular and vision therapies are designed to treat the physiological issues that relate to the vestibular and visual systems. They are definitely worth checking out. A good therapist should be able to diagnose whether there are vestibular or vision symptoms that will respond to therapy. A neuro-ophthalmologist can be a good start for the visual symptoms. A hearing and balance center and/or ENT can be a good start for the vestibular symptoms.

The memory problems are difficult to treat. There are fixes that help with new ways of remembering things. These are described in Dr Schutz book.

Anger and emotional outburst issues are mostly physiological but are treated by learning avoidance techniques. This requires some psychological support.

The head ache issue is a combination problem.

There are head ache stress issues that need to be addressed from a psychological perspective. Learning relaxation techniques is a common therapy. The ROSHI and pROSHI device is oriented toward these relaxation needs. There is a religious/philosophical component of ROSHI that some may find objectionable. Discussing this aspect of ROSHI is precluded from this forum by the guidelines so I will not go any further. If you are interested, you can do the research.

The head aches that are not stress related need to be treated with medications if possible. Fortunately, mine respond to Tylenol. I know many who get only partial relief from very strong drugs. The data on nutrition and hormone therapy for migraines and other head aches is not conclusive. I think it is worth checking out anyway.

The many overlaps between the psychological and physiological symptoms makes it important to get professional therapy or directed self therapy to reduce the psychological symptoms. Many of the cognitive/memory symptoms will improve when the stress/psychological symptoms are reduced. If the brain is spinning due to stress, it can have a difficult time doing the cognitive task.

A simple example is this: Try to think about a complex subject while there is visual or auditory chaos going on. The healthy brain may be able to overcome the chaos. The injured mind will struggle to filter out the chaos. This is the most common symptom of PCS.

To the PCS brain, there is environmental chaos (sound and visual) and emotional chaos (anxiety, frustration, anger) that get in the way of good cognitive functions. We need to understand how to separate the two types of chaos and work to overcome them or avoid them.

For me, I have learned how to settle my emotional/stress responses by either making thought choices or avoiding the stressful situations. I am definitely not perfect at this, but I am doing much better, especially with my wife's support. This is very hard to do on your own. You need those around you to help out.

The environmental chaos is harder to fix. I totally avoid some environments, like the Mall at Christmas. I use foam ear plugs. I wear sunglasses and wide brimmed hats to avoid bright lights.

Some have benefited from a desensitization therapy of being subjected to loud noises or bright lights in a supportive environment. This tends to work best with sound issues that are tied to anxiety issues.

Many PCS subjects will be professionally diagnosed as depressed. The professionals will support this idea with the concept that treating the depression reduces the severity of the cognitive/memory symptoms. This is a valid point in some cases.

There are assessment tools that will overlap between depression and Mild Cognitive Impairment. MCI may be caused by PCS or other causes like toxins, hypoxia, etc.

A positive result of this assessment can mean four things:
(1)The subject is depressed.
(2)The subject is depressed causing MCI.
(3)The subject has MCI.
(4)The subject has MCI with depression.

In the second, treating the depression might reduce or eliminate the MCI.
In the fourth, treating the depression might only reduce the part of the MCI related to the depression. The remainder of the MCI is of physiological causation.

A way to try to discern between psychological and physiological symptoms is:
If the symptoms come and goes with changes in mood etc., It is likely psychological. If it is constant with only minor fluctuations in severity, it is likely physiological.

My MCI problems exist all the time but are made much worse in environmental chaos situations.

I have experienced both causes of MCI. Twenty-six years ago, I was defrauded out of a very large sum of money. This left me and my young family in severe turmoil. I lost many cognitive functions. A ortho-molecular psychiatrist treated me for eight weeks with nutritional and hypo-allergenic therapy.

I recovered very well in those eight weeks. I learned how to avoid a repeat by maintaining my nutritional regimen and avoiding the allergens that effected my body's function. I was likely overly sensitive to this stressful situation due to my concussion history.

There is some interesting commentary on the overlap of psychological and physiological problems with MCI on the web site of attorney Gordon S Johnson at www.gordonjohnson.com

Concussed scientist,

I know what you mean by the dizzy or leaning to the right symptom. I experience it when I am sleep deprived. This can be because I did not sleep well or have not been able to get to sleep. My wife can predict some of these times because I will be very agitated as I try to sleep. My agitated sleep tends to go in waves. I have been struggling for the past few weeks after doing real well during November, December and the first half of January.

If I remember correctly, Dr Schutz discusses the emotional issues in the latter part of his book. He mostly mentions avoidance techniques.

Do you have any specific issues you are struggling with? Maybe someone here has found a way to reduce those issues.

My daughter is also 15 and her injury occured 4 months ago. I've got to two stories to share that show small improvements.

The other night, she was very engrossed in a book - which in it's self was an improvement. Knowing that she would stay up all night reading, I asked her to give the book to me to remove the tempation. She was being difficult about it, so I gave her 5 minutes to put the book in my room otherwise I would take it away for a very long time. She complied and then went to bed. A few days later, she was complaining that she had nothing to read. I told her she could finish the book she gave me. She broke out with a smile on her face and told me she had already finished. She inisted that she didn't sneak in my room and steal the book but didn't remember when or how she finished it. I asked her questions about the ending and it seemed she had read it. I was really preplexed for days how she managed to finish without me knowing it. Eventually, I pulled out the book - opened it up to her book mark and realized I had pulled a fast on. She had swapped the dust jackets with another book and gave me a different book! Her cognitive skills have to be improving, if she could come up with a creative way to trick me. Most parents would have been upset by this - I was thrilled!

Tonight, she took the time to actually do her normal teeth brushing routine (brush, floss, swish, clean the retainers) for the first time since her injury. She just hasn't cared very much about the personal care things (shower, teeth, hair, etc). Some day, it was tough just to get her to shower, comb her hair and brush her teeth.

LENS neurofeedback recovery story
 

Hey Guys,

On this website is a very good article of a recovery story of a girl who had had 4 major brain injuries. This is inspiration for us all! Feel free to read the entire thing, but her story is about 1/2 way down titled "Sharon's Story."

http://stonemountaincenter.com/site/...ment-modality/

Mark - thanks for the insightful analysis on these issues. It would seem from reading your post that my sumptoms are mainly physiological. I suffer from this weird vision symptom where everything seems like its momving in slow motion, combined with a lost sense of time (although no balance problems). Have you ever had any vision therapies? Which would you recommend?

Baseball,

I don't think Mark has ever tried vision therapy, so I'm not sure he would be a good person to ask. I have tried it and it works very well. If you are interested, check out these websites:

http://www.novavision.com/Home.html

http://nora.cc/content/view/93/86/

I would recommend contacting someone from the NORA (not NOVA) website. I worked with someone from here who was associated with them and she was very good and very comprehensive.

You may also want to look into vestibular rehabilitation as the visual system and the vestibular system work in conjunction with each other.

Most insurance companies will pay for visual rehabilitation but not without a hassle. Get the codes from the vision therapist and call your insurance company. If they say that they do pay for it, get it in writing. For some reason, insurance companies like to fight not paying for this even though the FDA has cleared it for reimbursement.

Vestibular rehab will definitely be covered though because physical therapists who specialize in this field administer the therapy.

Typically what happens is that once your physiologic symptoms begin to disappear, the psychological ones follow suite. This makes sense because for most of us, the physiological symptoms are what causes the psychological ones, i.e. depression.
And these therapies are not about finding new ways of doing something. They are about reprogramming the brain to operate at an optimal state. Some people even find that after doing the therapy, their vision/balance improves beyond where they were before the head injury

Thanks mhr4. You mentioned that NORA is supperior to NOVA. Does NORA use the same apparatus (Vision Restoration Technique) as NOVA? There is a NOVA provider 10 minutes from me, however the nearest NORA is 45 minutes away. I was actually tested on the NOVA device a few years ago and it was normal, however I am worse now than I was then. Is it better to see an opthmologist rather than an optomitrist in this case?

To be honest, I have never used NOVA, so I don't know a lot about it. NORA is just an association that vision therapists who specialize in brain injury rehab belong to. NOVA seems to be a specific type of rehab that only certain therapists do. So, if you go to someone who does NOVA, you are only going to do the NOVA protocol. However, if you go to someone who is associated with NORA, you are going to do a variety of protocols, which could include NOVA. It does seem that NOVA has some research to verify its effectiveness though, so that may be something to consider.

As far as choosing an ophthalmologist over an optometrist goes, I'm not sure on that one. I guess it would be similar to choosing between a psychologist and a psychiatrist. Ophthalmologists are MD's who receive advanced training on the visual system and Optometrists are people who receive training only on the visual system. I would probably be inclined to go with an ophthalmologist over an optometrist if I had the choice. However, the lady who did my rehab was an optometrist and she was great. She has even published research on vision rehab and brain injuries. So, again, not sure on that one.

I think most of these guys offer free initial consultations. You could maybe visit both and decide which one you want to do based on your meetings.

I would be interested to know more about your visual symptoms. My daughter had a weird eye jumping thing happen so neuro sent us to a neuro opthamologist. He was basically a jerk and thought her symptoms were psychological. Anyway...he found some damage to optic nerves, loss to peripheral vision, and sent us for visual evoked potential test. We were told these issues would heal with time. Her vision is still 20/20. She can read again and the eye jumping thing has gone away. She complains of occassional headaches and lightheadedness at times.

What symptoms would let me know that she needed some visual therapy, in addition to time, to aid in her healing?

I found mhr4 previous postings and neuro skills links. Thanks for that!

My daughter does not seem to have any coordination, balance or reading problems. She hasn't said anything about depth perception or thinking things are moving that aren't. Her cognitive skills are improving rapidly right now. I might follow back up with her usual optomotrist and have him review the jerky opthamologist's findings and re-test at least her peripheral vision.

Headache, lightheadedness, and nausea (all occasional - like two or three times a week) are the biggest remaining issues. Definite improvements, but i still don't want to overlook anything I could do to aid in her recovery and safeguard her from future.

baseball,

I can speak for myself regarding vision therapy. ** No, I have not had any vision therapy. Not because I do not believe in it. I believe it has valid applications. I do not suffer from any vision problems that are treatable with vision therapy. My visual memory problem is singular. By that I mean it is not caused by or made worse by any of the other treatable vision dysfunctions.

My photo-sensitivity has existed for over 40 years. Since I need corrective lenses, I use photo-chromatic lenses to lessen the brightness around me. This is the standard treatment.

Even though I have a reasonably strong astigmatic problem (3.5 diopters), otherwise, I have excellent range of view and ability to discern objects in a cluttered field. These abilities have remained stable or improved over 45 years. I have slight convergence difficulties that are attributed to my astigmatism. My brain is so precise in its interpretation of visual information that I need a very accurate astigmatic correction. My astigmatic correction axis must be well within 2 degrees. This creates a serious problem between the optometrist and the dispensing optician.

My visual difficulties are due to my brain not being able to filter out excessive and extraneous visual stimuli. I have the same problem with auditory processing, only worse. This problem has only existed since my 2001 injury. Prior concussions did not cause any lasting deficiencies in this area.

There is a big difference between an optometrist and an ophthalmologist. There are optometrists who are trained in vision therapy but they are the exception rather than the rule. They can be life savers if the vision problem is treatable.

My suggestion was finding a neuro-ophthalmologist. They have additional training beyond the generic ophthalmologist. Although I have an understanding of therapeutic optometrists, I neglected/forgot to mention this therapy.

I doubt you will find an ophthalmologist who will offer a free consultation. Some of the more holistic optometrists may offer a free introductory consult but beware the practitioner who offers a free consult that is really a "show and sell." They will use the time to sell their therapy/practice rather that look into your specific needs. I am very hesitant of professionals who feel the need to give a sales presentation. There are too many snake oil salespeople out there.

I have had too many free consults that were just an effort to bring in a new patient, regardless of diagnosis.

There are a variety of vision therapies. The most common is used to correct or improve vision problems such as lazy eye, crossed eyes, double vision, convergence insufficiency and some reading and learning disabilities. Double vision and convergence insufficiency are common symptoms of PCS. There are some reading difficulties that are also common to PCS.

EMDR is a common alternative vision therapy. Eye Movement Desensitization and Reprocessing (sometimes called Reprogramming) is intended to resolve past stressful experiences. It is rather controversial but has many strong proponents. Since it does not require a specific piece of equipment, EMDR does not fall under the FDA Regulatory system.

ROSHI and pROSHI are not within the normal range of vision therapy. They are passive therapies (the patient does nothing) that use the visual system to try to use light pulses to stimulate the brain into a different and hopefully corrected wave form. ROSHI and pROSHI are FDA labeled as relaxation therapy devices.

Their promotion for other symptoms is definitely off-label. As I stated earlier, they are based on a philosophical/religious principle that some may find objectionable. Here is a listing of the publications and presentations **. http://www.nnrionline.com/index_files/Page1276.htm

**

There is a big difference between a psychologist and a psychiatrist. The former is a Psy.D. or Ph.D. The Psy.D. is trained in the psychological diagnostics and therapies. The Ph.D. requires understanding the research and statistical methods of the Psychological discipline. A neuro-psych has additional training and residency requirements in the neuro testing and assessment fields.

A psychiatrist is an M.D. sometimes with a Ph.D. also. Some psychiatrists add a neurology study/residency to their training. The depth of medical/physiological knowledge of a psychiatrist can be very helpful with PCS. Psychiatrists often have more psychological knowledge that psychologists have psychiatric knowledge.

The psychological versus physiological needs of a brain injury are best treated in the proper order. The psychological needs can complicate the brain's attempt at physiological healing or improvement. Psychological stresses create a cascade of chemical processes (stress hormones) that can preclude physiological improvement.

The psychological aspects can be treated more specifically. The physiological aspects are not only difficult to diagnose specifically, but also difficult to treat specifically. Other than seizures and brain swelling and in the best cases head aches, the microscopic brain cell injuries are slow to respond to treatment.

One of the primary psychological components that are worth treating is the anxiety/OCD/depression . This is often a result of the "Am I going crazy?" or "Why is this happening to me?" repetitive thought process. PCS creates a physiological environment that makes anxiety a common problem. This is why many doctors use anti-anxiety/anti-depressant medication for PCS patients. The reduction in anxiety/depressive symptoms is read as a improvement of the PCS symptoms. At least, it causes the patient to not pester the doctor with such an intense hypochondriac style.

CBT (cognitive behavioral therapy) is also helpful with these anxiety/OCD/depression components. This starts with understanding the underlying physiological symptoms. This "redirecting thought" is very helpful as we try to deal with our symptoms. For me, it often means walking away when my mind wants to get angry. Adult 'time outs' can be very beneficial.

baseball, You are engaging in a good process. Understanding the different diagnostics and therapies is necessary prior to spending good money on them. It is also worthwhile to understand your own specific symptoms. Knowledge is power, especially when it is your own health, success and money at stake.

Keep asking questions and researching. Try to make it a point to differentiate between statistically validated evidence versus anecdotal (individual case reports) evidence. The placebo effect can often cause up to a 60% positive response. Statistically valid studies will address and/or adjust for the placebo effects.

Thanks for all the replies and suggestions everyone. My visual problems are different than what Mark and PCSLearner have been experiencing. I have been trying to explain, to myself and to doctors, what is happening visually for years but I can't find words to describe it. I also find describing how I feel near impossible. It is so brutally frustrating. There are two issues going on with me that I will TRY to explain.

First, there is the foggy disoriented feeling that I constantly have. I lack the ability to "feel" time and space, that is to "feel" where I am. This is the main complaint I have. For example, I cannot distinguish between 10 seconds ago and 10 hours ago. It is they either all feel the same or there is some memory issue, but I remember everything that happens throughout the day. The best way I can describe it is it feels like I am drunk and high all day (even that would feel better) and that my head is filled with water. There is no physical pain associated with. I get no headaches or migranes, aches, light sensitivity. Nothing. I also have no fatigue during the day, I never feel like I want to take a nap. I sleep a full 8-9 hours and wake up rested (although since my symptoms arose I have been waking up briefly once a night which I never did). I have been trying to explain this feeling for years but it is virtually impossible. I also get very confused when I speak.

Second is the vision issues. It feels like I am seeing things in frames. That is, I focus on one object, then when I move my eye it immediately goes to the other object with no smooth transition. It's almost like there is a moment of blacking out between each movement. I don't even know if this is the correct way to explain it. It might be associated with the disoriented feeling, not independednt, I don't know. Objects are clear, so nothing is wrong in that department. This combined with my spacial and time fog is how I am feeling.

I am not depressed or have anxiety, I take xanax sometimes but that doesn't make the symptoms go away. Which is why I was asking about neurofeedback or vision therapy, it is not depresssion causing MCI or depression with MCI (issues 2 and 4 of Marks previous comments). This feeling just one day appeared, I felt the instant it took over my body (I noticed it a little a few days after my incident, then it got really bad right after my flight the next day).

What I have learned in the past years of researching and experiencing these brain issues is that you can research and do therapy all you want, but it is impossible to actually know what the problem is. I have never read anything about a doctor accurately pinpointing the problem on a patient and treating that issue. Everything is a hypothesis about what could potentially be wrong and then just letting the brain heal itself, and treating it with everyday vitamins that are good for the brain. Its like trying to derive Einsteins theory of relatively without taking Precalculus. The brain is so inherently complex and humans probably know maybe .01% about how it actually works. It would be nice to have some diagnostic tool, like they have for automobiles, that you can just plug into your brain and it tells you exactly where the fault is.

FYI I am taking B6, B12, C, Fish oil, multivitamins, E, A, Ginko, and Rhodiola Rosea

Also, Mark I agree 100% with you on the optomitrist/opthamologist issue. I would have no problem seeing an optimitrist over opthmologist for therapy if I know what exactly is wrong, like you. However I have no idea what is going on.

baseball,
Do you know what nystagmus is? Your symptoms sound similar to pathologic nystagmus. This is a symptom of a vestibular injury.

I would keep pushing for a doctor to look into this. Do you live anywhere near a medical school? Sometimes, difficult to diagnose problems can be submitted to a large group of med students who have time and access to vast amounts of medical research.

The disorientation to time is also a specific symptom that should point to a specific part of the brain. I have a difficulty to track time as it passes. Or to put events in chronological order. I may remember that something happened but have no idea when. If it was today, yesterday, or last week. The past ten years are all mixed up.

What was the precipitating event?

What is your neurological history? concussions? history of getting passed out drunk? toxic exposures? diving accidents? heavy metal exposure? high fever? sinus infections? tooth abscesses/root canals? STD's? syphilis can cause neuro problems but go undetected for years.

What diagnostics have you had done? Any high end imaging? Or qEEG?

Have you had your B-12 and folate levels checked? Some people do not process B-12 orally in sufficient quantities. I received B-12 shots at one period in my life. I would add folic acid, niacin and thiamine to your regimen.

I looked into nystagmus, it seems to be more involuntary movements, whereas mine just happen as I move my eyes (although I do feel there is something wrong when I stare at an object, or even keep my eyes closed. I suspect this is just the fog). My time disorientation seems similar to yours, however I can put things in chronological order. For events that happened days ago however I have to think about it a little harder, but I can still remember when events happened. THe precipitating event/events are as follows:

I played heavy contact sororts all throughout highschool, but my first significant head injury came when I fell off a top bunk of a bed, while intoxicated and smalled my head ona concrete floor. I did not get knocked out (I don't think) but I vomited afterwards. The next day I was feeling groggy, but the following few weeks I felt normal. Then one day these symptoms I was describing instantly appeared out of nowhere (also developed a stutter, confusion speaking during this time). I went to the doctor, got a MRI, CT, IMPACT, and I few exotic others I don't remember, all came back fine. I also saw a neurologist, opthmologist, neuropsych, chiropractic adjustments, tested for lyme, sleep apnea, treated for depression and anxiety. Everything was negative so I just figured I had PCS and waited it out. During this time however I continued to drink and stayed active because I didn't know better and I was not feeling as bad as I am now. A few years passed I got off the antidepressant/anxiety because I either 1. got better or 2. got used to the way I was feeling and was content, I don't know which one, either way I was for the most part happy. Then a month ago I was at a bar and got sucker punched in the nose. I felt fine for a few days then the symptoms all of a sudden like a ton of bricks came back again. It was light at first then hit real hard after my flight the next day. It has been way worse than the first time as I remember, because I can't workout or anything, and the thought of drinking is very unappealing.

I dont have any STDs so I don't think it is that. I haven't had qEEG done yet. Toxic exposures maybe I work in a chemical lab but that is unlikely,
yes I passed out 1 or 2 times, I don't have any high fevers however my allergies get real bad a times (throughout my life). I don't think I have any B-12 problems because I have had many blood tests in the past years and there was no problems. Had a couple car accidents but never hit my head. One time I went to one of those oxygen bars for fun and I remember feeling really clear afterwards (before the 2nd hit). Something is wrong neurologically and I really don't know what it is.

Baseball,

I'm not sure if this has been mentioned to you or not, but you could also look into neurofeedback. The LENS neurofeedback system is especially helpful for people who have had multiple concussions. And, typically if the LENS doesn't work for you then that means you do have something else going on with you neurologically. So, it can be a usefull tool for that as well.

Regarding vision therapy, I think it would at least be worth investigating. It really doesn't matter if you visit someone who is an optometrist or someone who is an ophthalmologist because they both receive the same training in vision therapy. The main thing you need to be concerned about is their level of experience treating brain injuries and ALL of them offer free initial consultations. Also the therapist will work on training your brain's visual system and not just your eyes, which includes visual filtering and processing among other things. After some thought, I suggest you go to someone who is affiliated with NORA than NOVA.

Good luck!

I would strongly suggest you stay out of bars and stop drinking. Your concussion while drunk is like having twice the impact on your brain. The alcohol makes it so your brain is already struggling to function. Add a concussion and your brain is in serious trouble.

Has anybody here had any personal first hand experience with LENS neurotherapy?

What improvements were noticed?

How many sessions were completed?

What diagnostics were done before and after the LENS therapy?

Was the LENS therapy done by an M.D. or another kind of therapist?

I haven't drank or went out in a month. Regarding neurofeedback, I spoke with a university researcher and he said that there is no solid evidence in the literature that this technique actually does work. Only a few well controlled studies exist with few participants.

Regardless, I looked into neurofeedback therapy, and unfortunately it is not covered by insurance and therefore I am unable to afford this treatment. 30-40 treatments at $150 a piece is just too expensive to pay out of my pocket.

Mark,

As with all of the therapies I suggest on here, I have had direct experience with LENS therapy. I'm still in the process of doing the therapy and so far I have been very pleased with it.

The results are very specific to each person doing it because we all have different problems to alleviate. I have thus far seen a pretty significant reduction in symptoms since beginning the treatment. I have done around 20 sessions and the docs think I'll probably have to do close to 100 before I'm done. I have a lot of "crap" to work on...:winky: To cut down on the cost of treatment, I wound up buying the equipment for home use and my doc supervises me over the phone/skype. I am very tech savvy and have a degree in molecular biology, so getting trained on the equipment wasn't that big of a deal for me. It is very easy to use, so I'm sure it wouldn't be a problem for anyone else considering doing this.

I've had three diagnostic tests done before I began. I did a symptoms questionnaire, qeeg and a LENS map. The qeeg is to also be used for Z-score neurofeedback that I will begin in a month or so.

The person supervising my therapy is not an MD. He has a Phd. In my opinion, as long as the person has a doctorate within the health field, it doesn't matter if he/she holds an MD or not. I would not recommend going to someone with only a masters though.


A good resource of information is Dr. Stephan Larsen's book, "The Healing Power of Neurofeedback." I believe Dr. Len Ochs' office, who is the person who invented the LENS, will entertain calls. So, you could also give them a call and ask questions.

Hope this helps.

Baseball,

Unfortunately, that is the negative stereotype associated with neurofeedback. There has been research done on it with very good results but most in the medical community don't know about it. I won't get into why this is, but let's just say that the pharmaceutical companies had something to do with it. I could send you links to these articles if you are interested. And, some insurance companies will pay for it but it is like pulling teeth to get them to. Anyway, if you do consider it in the future, you should know that the LENS is currently being investigated as a treatment modality by the Veterans Administration for Iraqi/Afghanistan vets with brain injuries.

But then again, I'm not a medical doctor so take anything I tell you with a grain of salt. Good luck.

Please send me the links. I am open to anything right now. Does neurofeedback help with other ailments besides PCS. Could my symptoms be PTSD related? Is it punch drunk related? I may or may not have gotten a concussion. I am assuming PCS, however I don't have any of the classic concussion symptoms. I am just really confused right now.

Neurofeedback has been shown to be helpful for almost any neurological related disorder unless it is a result from another system in your body malfunctioning. It is very helpful for PTSD symptoms. A protocol called alpha/theta training is used and it is very effective in alleviating PTSD. Sometimes, a concussion/brain injury will exacerbate an underlying condition you may have but you were doing a good job keeping in check. So, that may be the case here. As Mark mentioned, it may be worth your while to get some lab work done. I would suggest getting a complete metabolic profile done, check your thyroid (TSH, FT4, FT3, RT3), check all of your sex hormones (testosterone, free testosterone, estrogen, PSA, progesterone, pregnenenalone, SHBG, and LH), check your adrenal glands by doing a 24 hour saliva test, check your growth hormone and B12 (if this is low, it can be an indicator that your other B levels are low). Although it is highly doubtful that you have this, you could also check for Lyme disease. The great news is that insurance will cover the majority of these tests. And keep this in mind, just because your levels are within normal range does not mean that is a healthy range for you. Some docs are so mechanical in their approach to medicine that they will only go by the ranges the lab provides and if you are within range, they will dismiss you as being fine. I had this happen to me with my testosterone and adrenal glands. Both were low but within normal range and my normal PCP said they were fine. I got a second opinion from a specialist in hormone replacement therapy and this person said I had the profile of 95 year old man (I'm 31). So, just make sure to do your homework.

Like most things related to the medical field, your average run of the mill doctor will not know to test for all of these things, nor will he/she know what to do with the results. You will have to find someone who knows about hormone replacement therapy and thyroid/adrenal gland therapy. And trust me, Endocrinologists are completely ignorant on how to properly treat the thyroid/adrenal glands, so stay clear of them if you can. I've had pretty good luck with anti aging doctors and holistic/naturo pathic doctors. You should google: "adrenal gland, thyroid, doctors" and you should find one in your area.

As far as the links go, I was going to peruse the internet and find them for you because I don't have them on this computer, but I figured you could just do that yourself. Just google: "neurofeedback, research, brain injury, hoffman" and you should find all of the articles related to this. You could also look into: "LENS, brain injury, research" and find some info on that. Good luck.

**

baseball,

Punch drunk and Post Concussion are the same, just a newer medical term. They used to call PCS/PTSD shell shock. They are slowly learning.

Beware the cost of the lab tests. Many insurance companies will fight you on whether they are "medically necessary." Mine came to over $1,000. I am waiting to see what my co-pay will be. You might want your physician to write down a strong 'medical' reason for the tests.

Mike is correct. As I mentioned much earlier, many doctors will use the broad 'normal' range as their target. This is not acceptable. My testosterone was in low but normal range as was my DHEA. My physician wanted both at the top of the range. Same for my B-12. And, endocrinologists are better at diabetes. Not much help with our issues. The hormones and D3 take a few months to see the true benefit. My six month follow up comes in April. We'll see what the tests say then.
**

You may notice that after those few months, the hair on your legs gets softer. Mine did. LOL

**

Regarding the LENS system. There is still not much info available online.

I wish Len Ochs would update his web site. He has removed a lot of information that was there just a few months ago. I talked to his wife and she was rather limited in her response.

An alternative web site states <It [LENS] is an FDA-certified Class II medical device. It is “510K exempt.” The “Class II 510K exempt” medical device classification is a less restrictive certification than a 510-K certification, meaning that it is considered by the FDA as safer than the 510-K devices — which includes most other biofeedback and neurofeedback devices. The FDA notification letter immediately allows us to market the LENS as a biofeedback device for relaxation and self-regulation. How it is used is a function of what the provider’s licensing board allows.>

An FDA search reveals only this form at http://www.accessdata.fda.gov/script...on.cfm?ID=3209

Device device, biofeedback
Regulation Description Biofeedback device.
Regulation Medical Specialty Neurology
Review Panel Neurology
Product Code HCC
Submission Type 510(K) Exempt
Regulation Number 882.5050
Device Class 2
GMP Exempt? No
Note: Class II devices the Food and Drug Administration (FDA) has also published a list of Class II (special controls) devices subject to certain limitations, that are now exempt from the premarket notification requirements under the Food and Drug Administration Modernization Act of 1997 (the Modernization Act). FDA believes that these exemptions will relieve manufacturers from the need to submit premarket notification submissions for these devices and will enable FDA to redirect the resources that would be spent on reviewing such submissions to more significant public health issues. FDA is taking this action in order to meet a requirement of the Modernization Act.
Third Party Review Not Third Party Eligible

From what I can figure out from all the information available, the LENS system is exempt by the newer FDA doctrine of the manufacturer being able to show it does no measurable harm. This is a new system used to lessen the work load at the FDA. They call this 'modernization.'

PCS recovery
 

I have had PCS for 5.5 months following a fall. I did not have a severe concussion, at most it was a very mild concussion. The post concussion syndrome has been anything but mild! The first 2 months were bad, constantly tired, headaches, blurred vision, tinnitus, lack of energy, wooziness - the usual stuff. However, I seem to have made significant improvements starting at about the 2 month mark, and then smaller improvements about every month (can give the sense of plateau-ing between improvement stages). In most of the cases, it isn't that i noticed some dramatic change waking up one day, but rather one day I realized that one or more symptoms have reduced or in some cases nearly entirely subsided as i get through the day. I still have symptoms, and I still get headaches. But, rather than daily headaches that are severe, I get weekly headaches (maybe twice a week) that are milder and milder as well. My vision has gotten better as well. The biggest improvements I have noticed have to do with the reduced level of fatigue and general "wooziness". This has allowed me to return to work (phasing in slowly) which helps get one's mind off of dwelling on the symptoms all the time. At the same time, I have also had new symptoms arise that were not part of my experience in the first month. After 1 month, I developed tinnitus and also frequent nausea. Both of these symptoms have faded somewhat, but not yet fully.

I have seen very, very good neurologists for this - long practicing one that was chief neurologist for several pro sports teams and said he had seen literally thousands of PCS patients over 30+ year career. After meeting with him in detail, i firmly believe that not a heck of a lot is actually known about PCS and there are different theories out there amongst even the best in the medical community. Feedback I got was that there is no "normal' for recovery. Some see substantial improvement in a short time period, others see smaller improvements over longer time period - severity of concussion is not a predictor of PCS recovery timing. I have also spoken with several others who have had PCS, some who recovered within months, others that took more than a year. It's tough to find two like experiences with this.

My own philosophy has been to "listen to my body". If I am too tired, I back off. If I feel better, I do more things. It allows me to test limits during the recovery process.

DTRPCS,

You have PCS figured out pretty well. Most will agree that the Doctors usuallly have the least knowledge about this.

FYI, I was looking at a brain SPECT I had done about 5 years ago and it said mild to moderate hypoperfusion and on the report it said the cause was inconclusive. I don't think the doctors thought much about it, which seems a little weird now that I look back at it. Could this be a cause of my symptoms and how can blood flow be increased to the brain?

It would depend on what part of your brain has the hypo-perfusion. You might consider taking aspirin as therapy. Therapeutic aspirin will help increase blood flow. Most take 81 mg of normal aspirin. I take enteric coated aspirin that does not dissolve in the stomach. This is a safe from of aspirin therapy. I don't know if 81 mg is available in enteric form. Find the lowest dose of enteric aspirin. take one each day.

Also, niacin is helpful with circulation.

Yes, hypoperfusion is most likely the root of your problems. The brain, for some reason, doesn't like to send blood to damaged tissue. And yes, you can do things to increase this. Neurofeedback would be one. Dr. Amen has actually demonstrated in a study that neurofeedback increases hyperperfusion when done. The pROSHI is thought to induce hyperperfusion. There are also some supplements you can take for this. Just google it and you should find them.

**

There are studies that show HBOT increases perfusion to damaged areas. The studies do not mention if this hypo-perfusion causes any symptoms nor whether the increased perfusion lessens any symptoms.

But, then again, I like to suggest that people get started with habits and therapies as a first resort that are affordable, main stream and well proven and do not require a doctor's expensive therapies or fees. Most people are deficient in nutrition due to the habits of eating overly processed foods. There is plenty of research that supports a Mediterranean diet for both bodily health and neurological health.

The value of aspirin therapy is widely known. Same goes for niacin. Are we trying to fix things that are not broken, just malnourished?

But then, we are a society that would prefer a quick fix by someone else than by being disciplined in our own personal nutrition and habits.

I am still waiting for the scientifically based research on the efficacy of the different neurotherapies to be published. Maybe they are still limited to the subscription based journals. Usually, the Abstract will be available online with an opportunity to purchase a complete report. Can someone point me out to the reports I can't seem to find.

Past 6 months post injury, nutrition and vitamin supplements are not going to do much to heal a person's brain and alleviate symptoms. They have even done studies on that with very little positive results. At that point, more aggressive intervention is needed such as neurofeedback and other therapies. They have also done studies on using cognitive behavioral therapy to treat PCS and these studies have also resulted in very little improvement. Yeah, the therapies are expensive, there is no doubt about that. However, as I have posted many times on here , there are resources out there available to pay for these therapies. For example, in Colorado, there is a state funded endowment fund that will award $2,000 per year for two years to pay for any type of therapy. It's pretty cool actually because every 10% of every traffic ticket, drug ticket, and DUI ticket goes towards this. Also, there is a non profit brain injury fund that will pay in full for 40 sessions of HBOT therapy. Many therapists will also substantially reduce their fees for brain injured clients. So, you just have to be resourceful and find the money. If you can't do it, then have a family member do it for you. It's really just a matter of how bad do you want to get better? The resources are there, you just have to go find them.

Traumatic Brain Injury Trust funds are available in many states. We are trying to get legislative approval to start one here in Idaho. I am hoping to work with the Brain Injury Advisory Council when this reaches the Idaho Legislature. The key to these funds is the funding mechanism. As mhr4 said, they are usually funded by surcharges on traffic tickets, such a DUI, reckless driving, sometimes speeding, as determined by the legislative authority.

Since they are by application and not entitlement and limited to available funds, the PCS community will likely be last in line to receive any funds. The needs of those with TBI's that result in loss of motor function are the primary targets of these funds. The struggle PCS subjects have trying to get doctors to even recognize our struggles as real and caused by PCS will also make the application process problematic.

The benefits are control by the Trust Fund Charter and limited by available funds.

Here are some of the criteria of existing funds.

The Colorado fund is limited to those who have "Medical documentation of a traumatic brain injury that produces a partial or total disability as a result of impaired cognitive ability and/or physical function."

Kentucky's fund criteria for Medical Eligibility *is: People with a partial or total disability caused by injury to the brain are eligible to receive support from TBI's Benefit Management Program. Injuries to the brain may be a result of physical trauma, damage resulting from a lack of oxygen, allergic conditions, toxic substances and other medical incidents, including damage caused by drug overdoses or alcohol poisoning. Eligible individuals have impaired cognitive abilities or impaired brain function.

Georgia has a fund that is limited to those who have a letter from a physician, medical practitioner, hospital clinic or other medical or medically related facility, or insurance company verifying the nature (type) and cause of your injury. The letter must include both the nature (type) of injury and the cause of the injury. The cause of the injury must be one of the following. Conditions resulting from stokes and/or diseases do not qualify.

1. Accidental Fall
2. Accidently struck by or against an object/person
3. Assault
4. Self-inflicted Injury
5. Sports/Recreation injury
6. Transportation/Motor Vehicle accident

Who have Have Exhausted All Other Sources of Funds

The Commission intends for the Trust Fund to be a payer of last resort. Please review the following possible sources of funds and make sure you have applied for and exhausted all of those for which you qualify before submitting your application to the BSITF.
Medicaid
Medicare
SSI
SSDI
Private Insurance
Short Term Disability
Long Term Disability
Vocational Rehabilitation
Veteran's Administration
Victims Compenstation Fund

Person Support Services
Community Care Services (CCSP)
Independent Care Waiver Program (ICWP)
Mental Retardation Waiver Program (MRWP)
SOURCE

You can do an online search for Brain Injury Trust Fund Idaho or your state to see if there is one in your state. Good luck.

I have been successfully using vitamin and nutrition therapy for 28 years, after it was first recommended by a M.D. My symptoms will increase drastically if I do not keep up my regimen. And it is not me that notices this increase in symptoms. It is my wife.

In the past, I would run out of some of my 20 some piece daily regimen and within a few days, my wife would ask me if I am taking my vitamins. When I said I had run out of some, she would run out to restock my inventory. This included a 20 mile run to Costco for the brand I like (has the dosages I prefer)

Eventually, she bought small zip lock bags for me to prepare a month's worth at a time so she could set them out for me to take. She will even load the bags if she sees that I am getting low.

So, don't take my word for it. Take my wife's word. She has to put up with the irritability, lack of attention, forgetfulness, disruption in sleep, and overall lethargy.

But then, this is only my and my wife's opinion. Your mileage may vary.

What is an FCE?

I finally figured out what a PMR is (Physical Medicine and Rehab Doctor)

Some of these acronyms and other abbreviations send me for a loop.

PT, Physical Therapist, teaches about Pain Tolerance
OT, Occupational Therapist, I haven't figured out what their occupation does, usually plays games and assigns projects or puzzles.
PCP, Primary Care Physician, aka, Primary Color Physician, Only uses three crayon colors
Ph.D. knows more than most about a specific subject. very Philosophical
CSW, Clinical Social Worker, schedules parties at the clinic LOL
ICSW, Ice Cream Social Worker, serves the ice cream at the parties at the clinic
MSW, Master Social Worker, arranges better parties.

Have I missed any?