Dear University Student,

Your experience sounds similar to my son's challenges following his third sport's concussion. I am writing on this website to tell you about my son's wonderful healing with neurotherapy. Neurotherapy is biofeedback for the brain. It is approved by the American Psychological Association and is a safe, effective treatment for mild traumatic brain injury, such as post concussion syndrome. Typically, a concussion slows down brain waves, which results in challenging symptoms. However, the brain waves can be moved back into the normal range with neurotherapy, because the brain is plastic. The first step in neurotherapy is to have a 19-point brain map, which uses a plastic cap with sensors to measures brain waves, and identifies brain waves outside the normal range. Through the use of computers, the abnormal brain waves are slowly returned to the normal range through a simple computer program using positive reinforcement. Two wonderful books, which explain neurotherapy, are: Biofeedback for the Brain by Dr. Paul Swingle, a neurotherapist, and A Symphony in the Brain by Jim Robbins, a scientific reporter. Both books are available online at Barnes and Noble. (In his book, Robbins reports that the Italian soccer team used neurotherapy as their secret weapon to help them win the World Cup. Neurotherapy can be used to enhance mental abilities, as well as for therapeutic healing.)

Our son is almost finished with his neurotherapy treatment, and we are seeing a return of his motivation, social confidence, and a return to his normal, happy mood. Essentially, neurotherapy is giving him his life back to normal, and his brain maps show the improvement as his brain waves move back into the normal range.

If you have any specific questions, I would be happy to answer them. As a parent, I researched neurotherapy very carefully before sending my son for treatment. There is nothing that goes into the brain; it is simply a method of measuring brain waves (similar to the way that sensors measure the health of the human heart) and then using positive reinforcement with computer programs to help the abnormal brain waves move back into the normal range. My son says that he does not feel anything different when he is actually having a neurotherapy session. However, after missing a couple of weeks due to finals, he called to tell me how much better that he was feeling when he returned to neurotherapy. The best news is that when the brain waves move completely into the normal range after numerous sessions, they stay there.

Helpfulmom,

I am interested in hearing more about the neuro-therapy your son has undergone. Is it volitional neuro-therapy or non-volitional.

Volitional neuro-therapy is when the subject controls the effect by changing thinking patterns to strengthen weak waveforms. It is often called neuro-feedback or neuro-bio-feedback. It may be done with a video game like system for the younger patients or just a moving graph for older patients.

Non-volitional neuro-therapy is when the system attempts to stimulate the brain with sound, light, electrical pulses, electromagnetic pulses, etc. The most common names are ROSHI, LENS, TMS (Transcranial Magnetic Stimulation). Some practitioners try to call this neuro-feedback claiming the devise feeds a signal back to the brain. This is an attempt by the industry to group the controversial non-volitional neuro-therapy with the less controversial volitional neuro-feedback.

Neither system has FDA approval for treating any medical condition. They are allowed to be promoted as relaxation devices/therapies with a limited exempt status. This exempt status iss granted due to studies that show the device/therapy to be GRAS (Generally Regarded As Safe meaning it does not cause harm to the patient) Promotion for use to treat TBI, mTBI, concussion, and any medical condition is forbidden.

None have been subjected to the kind of double blind clinical study needed to get FDA approval. Insurance companies that cover these therapies often do so under general psycho-therapy provisions. Some practioners have very creative treatment coding that helps their patients get insurance coverage.

There are plenty of anecdotal reports of success with both systems.

The volitional systems are well understood as they cause the subject to learn to exert more control over brain functions, either by better focus skills, relaxations skills, etc. The reward causes the brain to try to maintain the same functional level. This is a dopamine response system that is extremely effective.

The non-volitional systems are a mystery as to why they appear to work for some and not work or even cause distress for others. They mechanism of action is basically unknown. Some systems will use a pleasant or irritating sound as a reward or disincentive to changes in the brain wave form.

btw, the brain map is done with a qEEG (quantitative EEG)system.
Also, the APA does not have authority to approve any such device/therapy. They may endorse its use by their members. Currently, a sub-group within the APA has pursued an effort to get a critical mass of practitioners using these systems before the FDA and insurance companies can object.

I am glad to hear you son has benefited. His relapse (decompensation) likely had more to do with the stresses of finals that the time away from therapy. The studying and stress of tests, especially finals, is a common trigger for concussion decompensations.

When he learns to 'bring home' the skills he learns during neuro-therapy and apply them 24/7, his symptom free periods will increase. He has a choice in how he responds to the stresses life throws at him. Encourage him to bring these skills home.

As a Multiple Impact Syndrome subject, he will benefit greatly as he endures the ups and downs of life. The sterile environment of the therapy room can not be brought home. He will need strong skills to continue these benefits in the chaos of daily life. Eventually, they will become his way of life.

But, Mom, as he sets out on his own, he will likely have occasional setbacks. Post Concussion Syndrome subjects learn our best lessons the hardest way. When we get tired of the roller coaster, we finally understand that there are choices we can make to have a more stable life.

What were his major symptoms that improved with the neuro-therapy?

Dear University Student,
I am a College student!
In March of 2009 I fell off a horse and hit my head so hard that I still don't remember the surrounding 10 hours, not even the fall, I am only told that I fell. Then, two weeks later just as I was feeling well enough to go out, I went to watch a volleyball game and one of the guys who is a really good soccer playing kicked the ball and it slammed into my head. For the next three months until classes were over I only barely was able to stay. If I had not had friends willing to read my homework out loud to me and look over my papers and such, I would never have made it. I did nothing the following summer except sleep. Then, as soon as I returned to the stress of school and being an RA, the headaches came back, but not too bad. Then, I got slowly better so I started to dance again. My favorite thing in the whole world is to swing, waltz, tango, and contra dance. So, I danced, just a little because if I did too much I fell down. But of course, twice when I was dipped another girl was being dipped at the same time and kicked my head. Then, after Christmas break, my headaches were completely gone, so I went sledding. I only went down the hill four times, but I was nauseated for four months. Now, because I have been stressing about where to go to school this coming year, my headaches are as bad as ever.
Nothing helps but lots of things make it worse, exercise is the worst. Any activity can make me dizzy and nauseated and the headache goes from a throb to sharp. If I eat too much or too little sugar, if I am stressed, if there is bright lights especially florescent, if I don't sleep enough, if I sleep too much, if I think too hard, if I wake up. The one thing that I never had a problem with before now is sleep. I am purposely staying up late and getting up early, but still can't sleep.
this is my story.

Now, because I have had so much trouble, I have also done a lot of research. A lot of websites say that it is bad to take pain meds because it only increases the headaches, but I don't know. Balanced diet, that is key for me. They say to increase activity slowly, but I have not noticed that helping. At school, I increased my activity from not even walking to slowly walking more and more until I was walking about 2 hours a day to and from classes, but not doing any other activity. I still had terrible headaches from just the impact of my foot on the ground.
All I can say is keep it up! I went from the semester I it my head having my first to C's including a C- and then all B's except one A- then, the next semester I still had 2 C's but higher other grades. Then, this semester I had an A and 2 A- , a B+ and B, and one C. I am sure that even if I am not getting better I am learning to deal. My friends all became very knowledgeable about PCS with me and it helped them to deal with my weirdness and inabilities. They are what got me through and they kept me going through the hard times. Whenever I bit their heads off I made sure to apologize later and they were always understanding. Keep studying, keep working on ways to live with it and try to educate your friends. Slowly you will get better and at the same time learn to deal with whatever is left behind.

I am so sorry that you have to deal with this terrible...weirdness. Good luck to us all!
"Never Give UP! NEVER SURRENDER!"
Margarite

Hi, I am new to the forum and will try to give a quick history...I was hit in the back of the head with a softball in July 09 and did not know I had a concussion right away...I was riding rollercoasters three days after the injury because I didnt know and just felt tired. Severe symptoms started about a week later...headaches, fatigue, foggy, noise, light, etc. These severe symptoms lasted until about february 2010. I am still symptomatic today with the above, just to a lesser degree. I am upset because I was told I would make a "full recovery" by the UPMC Concussion center in pittsburgh and I have not. I consider a full recovery to mean back to my normal self...my normal way of thinking, feeling, and behaving...The symptoms have a significant effect on my life right now....lost my job, moved back home with parents, still not working....I am still looking for help/answers and struggling. My big question now is "full recovery". I am young 27 and have hope that I will get better and maybe fully recover, but am starting to have my doubts. This is my only concussion and I have been trying to heal from it ever since. I have seen my brother get hit in the head and act confused for about 15 min. but then return to normal the next couple days and I mean return to normal...no symptoms...like it never happpened. I think the word "concussion" can be misleading. I would say that my brother showed signs of a mild concussion and recovered fully. Now they called my injury a "concussion" but at this point I think "a mild brain injury with the possibility of permanent symptoms" would be more appropriate...I understand they tell everyone initially that they will recover fully because who wants to hear the opposite right after a head injury? All I can say is that I know I haven't recovered fully yet and if I do it will be Gods miracle. Any advice is welcome.

andy55,

I am sorry to hear of your struggles.

It is not at all uncommon for a doctor to say you will recover fully. Some studies show that about 80 to 90% will recover to what appears to be a full recovery. This full recovery means that under normal circumstances, the person will feel back to normal. Even these full recoveries are not full recoveries. When the brain is put under stress, it will become symptomatic.

In your case, you have a good case of Second Impact Syndrome or Multiple Impact Syndrome. More likely the Multiple Impact Syndrome. Think of it this way, after the hit with the softball, your brain became like a hard boiled egg with the shell cracked. The shaking of the roller coasters was like putting that cracked egg in a small container and shaking it. Now, it has a shell that is completely cracked.

Believe me, I have experienced concussion symptoms from amusement park rides. The long duration of the shaking can be much worse than an single impact.

What to do now? First, get an application started for Social Security Disability. You should qualify if you can document your cognitive and other problems. They will likely send you to a psychologist who can test you for these functions.

If you get better and don't need the SSDI, great. But the application process is slow so get it started.

Keep a daily journal of your sleep, food, and activities with a reference to how you are feeling/functioning at different times of the day. An entry might read: Woke up at 8:00. Ate cereal for breakfast while reading the newspaper. Needed to take a nap from the exhausting effort to read the newspaper. (This is my normal morning) Note the tasks that cause you problems. Like: reading causes exhaustion, trying to cook but forget and burn things.

What diagnostic tests have you had? How is your nutrition? Good nutrition is important for a injured brain to recover. Search 'nutrition' or 'vitamins' and you will find posts with nutrition comments. Avoid alcohol (one beer a day, max), minimal caffeine (one cup of coffee a day), and no artificially sweetened foods. Avoid high sugar content foods. Get good meat protein.

Forget about trying to compare different people and their recovery from a concussion. There is no way to compare different brains. They all react differently. Plus, your brain was already injured when it got injured again by the shaking.

List your continuing symptoms so I can help you with each. Each symptoms needs to be treated individually. Most of the treatment is more how to work with the symptoms and try to minimize it and stop it from getting worse, like foam ear plugs for the noise. Sunglasses and a wide brimmed hat for bright lights. Relaxation skills for the head aches.

If you can minimize the level of each symptoms, over the long term, that symptom will get better. Maybe not a full recovery but a much better functioning.

If you can, find some simple low stress activities to do. Fishing, walking a pet, light reading (complex story lines can be too intense)
Try to relax and get to know what you good functions are. That is the new you, at least for now. Try to learn to live with this new you. The reduction in stress will help you heal.

Keep in mind that you have two functions. Receiving information/stimulation and replying or presenting information of doing tasks.

I have serious problems receiving information both visually and auidibly. I need to read or hear things over and over to make sense of them. If I try to speak, I get flustered. If I put my thoughts down at the computer, I can go on and on. The computer screen becomes my short term memory so I can remember what I am thinking and saying.

If you can send me a private message, send me your e-mail address. I will send you a copy of the TBI Survival Guide. The link to it is broken but I can send you a copy of my file. Dr Glen Johnson has some good information at www.tbiguide.com if his web site and links are working properly.

If you feel comfortable, you can post your email address on this thread. Add some spaces and spell @ as 'at' to prevent address sniffers from getting your address.

I've probably already overloaded you.

My best to you.

Happy 4th of July.

Tough day, the sounds can be a problem for many of us.

hey Mark,

Thanks for the info. always helps...My symptoms are still mental/physical fatigue, headache, spaced out, everything seems slowed down, I sleep 12 hr a night and wake up feeling like garbage

I did apply for ssdi, I take fish oil, vit b, magnesium, and try to eat well and lots of water mostly for drink...I cant exercise except walk...

I just never feel like myself...like my thoughts are slow/muddled, I cant be productive at all...earfoam for noise, glasses for light yes, careful when drive and never for too long...

I mean I guess I just dont see any light at the end of the tunnel because it has already been a year..

andy,

Have you have an opportunity for someone to observe you sleeping? I am concerned about whether you are breathing properly during the night. The garbage feeling is more likely due to poor sleep than lack of sleep.

I have to be very careful about sleep habits. if I sleep in the wrong position, my breathing become irregular and I have stressful dreams. If I sleep correctly, my dream are better. My wife can tell I will have a bad day by how she observes me sleeping/breathing. She knows to disturb me to get me to change positions (to my back) if my breathing is irregular.

Watch the concussion presentation I just posted about. It can get technical but there is also some very good and easy to understand information in it.

My best to you.

Have not had a sleep study....but what I mean by garbage is how I always feel...like I wake up and Its always another day of this brain injury crap feeling. Its not like I feel worse in the morning...I always feel the same which is crap.

I just never feel like my old self..I lot of times I feel out of my body and spaced out. I have met a friend that had a concussion three years ago and is still struggling and we have a lot in common and we talk to each other and hang out for support.

I just went to concussion center and they suggest vestibular therapy as my balance is off a bit. I'm just scared because I want my life back and it seems so far away..like I will never be the same or whole again.

The doctors at the center just say sometimes it takes time and to just focus on what I am able to do now...not what I was before...I'm just always frustrated and sad.

The advice to focus on what you can do now is good advice. You need to drop your expectations, at least temporarily, to reduce the stress load on your brain.

Regarding sleep, You do not need a full sleep study to get an idea of your sleep. An observer or even a video camera to watch you sleep can help.

You should start your day feeling better at least to a minimal extent. If you feel just as spaced out, you are not getting any restorative sleep. Your good sleep should last at least a couple of hours or until yo take on a cognitive stress. I used to wake up feeling better, then I would read the paper during breakfast. The paper would exhaust me and I would need to take a nap.

Do you dream at night? If not, you are not getting good sleep.

Try to find a video camera with night shot capabilities. Check w9ith your friends and family. I think Sony makes one with night shot infra-red functions. It can record you during sleep in the dark.

You can also get a pulse oxymeter to wear at night. Check to see if your local medical supply and rental rents them. You may need a doctors script to rent it. It will measure your oxygen levels as you sleep and sound an alarm if they drop too low. I am considering buying one so it will wake me up when I am not breathing properly. They sell for $200 to $300. You wear them like a watch.

One way or the other, you need to rule out sleep apnea problems as a cause of your delayed recovery.

If you do stop breathing during sleep, each time is like another hit to the head.

Hope you can figure this question out.

My best to you.

yes,

I do dream when asleep. Sleep study still may help...Im just so tired of going to all of these different doctors and having none of them really help me...like they cannot help me or do not know what to do...

I cannot tell if I am getting better. I know I cant function the same...and I would just like some doctors to say that I will be able to live a meaningful and productive life again, but they have not said this bc they probably just dont know.

I guess I just hate feeling like this and having to wonder the uncertainty of my future or if I will even have a future worthwhile...