University student looking for advice..
 

Hi, I'm a student looking for help on this board. I grew up in a bad neighborhood and attacked by some thugs with aluminum bats which left a dent on my head. I used to be a gifted students back in grade school. After that incident i found myself extremely impulsive and hyperactive. I used to be very patient as i loved to work with computers such as programming and graphics designing. However, I still made it to college and received average grades. 2 years after the first incident, I happened to dived into a pool with no shallow end which resulted in my second concussion. It has been a year now and I can't seem to manage my time at all. I can still hold very educational conversations but cannot manage a social one. Everything that i have learned after the second concussion has been a problem to retrieve. I can't seem to learn... I space in and out all the time as well. Some days i feel as if I'm my old self again and function normally. But other days I forget who I am and cannot get myself out of the house and be productive like how i used to be. The first concussion happened when I was 17. The second when I was 19. I am now 20 and struggling in a UC. I want my old self back... Its been one year since the 2nd incident. On days when I am stressed... my brain just shuts off. I can't seem communicate with my friends anymore.. I lost track of all of them... What would you guys suggest? I have not received any therapy so far... I feel so scatter brained.. I decided to built new habits such as being organize which seems to help a lot and makes my life a lot easier.. But i want my brain back.. I used to be extremely bright.. top student in my classes... specially in math... I just needed some venting since most people in my life wouldn't understand. I rather not burden them..

Welcome !
 

http://dl.glitter-graphics.net/pub/1...qbo7cd4v0t.gif
You are certainly at the right place to 'vent' alllll you want!!!
Glad you're here!....Though I am so sorry what it is that brings you here.
I see you've found a good place to start with.

There are many very caring folks here and I'm sure they will latch right on to your post.
Hang in there.......:hug: You've done the right thing by coming here!

Truly Caring
Rae
:grouphug:

supreme818,

Sorry to hear about your struggles. Been there, done that, changed majors at SJSU back in 1974.

First, go to www.tbiguide.com and download and print the TBI Survival Guide. It will help you understand how your brain is behaving.

You are right at establishing new organizational habits. This is a priority. You need to be diligent in setting up organizational systems. Note cards, a day timer or PDA, alarms, etc. to remind you to do a task. Cell phones and smart phones can do many of these tasks for you.

Learn to over organize so that you can have over-learned skills to fall back on if you suffer another concussion and become even more symptomatic.

Your realization of the impact of stress is also a big head start. Stress is the kiss of death to PCS. Your symptoms will jump out and bite you when stress hits.

There are two parts to stress. You can moderate both.

Environmental stress can be planned around and avoided. Simplify your living environment. Get control of both visual and auditory stimuli. In class, sit at the front of the room to avoid looking at the backs of heads and all that distraction.

You can try foam ear plugs to block background noise. I need sun glasses to avoid bright lights.

Emotional or reactive stress is something you need to choose to control. You will need to learn to pick your battles. Many issues we get stressed over are not worth the effort. It does not help our situation. In fact, we make our problems worse by fretting and pushing too hard.

There are things you can influence and things that you can't. Learn the Serenity Prayer. Make choices to let go of the things that you cannot change.

Get to student health services and seek help. There are not many therapies to help you heal but there are strategies to help you cope. You have access to testing accommodations and other assistance. See if someone can help you get to understand the new you. You may never get the old you back.

But that is OK. You can still live a full and productive life without the old you. The social struggles are very common. You can learn how to work through these struggles.

You likely do not process social cues as well as you did in the past. If any of your past friends might be worth pursuing, have then read the TBI Survival Guide. You need to find some friends who can be your advocate and help you manage you struggles.

When they realize that you did not morph into a jerk but instead have undergone some neurological changes, the true friends will become evident and know how to stick by you. Say good bye to drinking buddies. Alcohol and PCS do not mix.

Do a search for nutrition or vitamins and read my and others' past posts. Your brain needs extra nutrition to handle the stresses it is enduring.

There are a few important factors. Your brain needs:
good sleep,
low stress,
good nutrition,
and plenty of time.

As a last note, you can help some of us out by posting in short paragraphs. I cannot read long paragraphs very well. I cannot track to the start of the next line. These visual struggles are common.

Let us know how you are doing. There is a wealth of experience, wisdom and compassion in this group.

My best to you.

Hi Supreme
 

Mark gave you a wealth of information! :)

Just wanted to add....and I know this sounds absolutely ridiculously mundane,
but keep a special notebook (the oldfashioned 'paper' kind :) )
Use the KIS (Keep It Simple) idea.
It helps tremendously to write things down, even as basic as 'who you are'....for those days you have when you can't seem to retain anything.
This may seem like silly advice, but really, it does help retain info by writing things down. Make alot of lists and notes to leave yourself for day to day things that you need to do.
Try to stay on a structured schedule.
And keep your notebook with you when you are in a situation in which you need to retain a lot of info all in a short amount of time......jot down 'bullet points' to remember if nothing else. You can go back and fill in more detail when you have the solitude to do so.

WRITE down the qualities about yourself you feel bring out the best in you.
Example: I am Rae, I love to laugh. I love to make people smile.
I ask God to help me get thru each day. ....... :rolleyes: you get the idea.
If you have something like this to see when you first wake up in the morning, it can help you to remind yourself of all the things you are capable of.

I have learned thru the years that the only way I retain 'learning' info is by writing it down. Refer to it as often as you need.
Take small recording devices to important lectures.
Personalize your learning agenda and stay focused the best you can.

I think it is awesome that you came here...this shows how serious you 'care' about yourself..... and you can come here ANY time you feel the need to unload, ask questions, vent, share an achievement.
You may not realize this, but by doing so, you could very well be inspiring someone else!

I am very impressed by your determination! Please don't lose that quality about yourself!!

Caring
Rae
:hug:

I have been taking herbal route in terms of medication. I know that the dangers of prescription drugs outweighs the benefits in the long run. I usually take ginko, b6,b12,fish oil, and a coffee to boost my day.

I used to drink and have no problem socializing with my peers. However, after the incident I find myself in a lost of words. This problem worsens at a crowded party. This is why I have decided to cut down drinking substantially. My inability to identify social cues is a really big problem for me. Girls would pass on hints towards me and I would just respond rudely... I never had problems with girls ever... in my life. There would be times where a girl would tell me that she is attracted to me and I would not know what to say back. (this happened too many times to count i might add...) and it frustrates the hell out of me.

I really just want to live a normal life really. I just feel so incomplete. My personality is gone... I have no real hobbies because I can't seem to hold any term of commitment for ANYTHING. I feel if this problem continues on... I will find myself single for the rest of my life as I find it really hard to form long term memories.

I find a routine is very helpful and relieves a lot of stress as I do not have to stress about anything "different" being introduced into my schedule that might freak me out. But then... those type of events are what makes life fun and memorable... wouldn't you think?

My goal now is just to graduate and make my parents happy as I have stressed them enough. I had so much potential... But this injury greatly hinders my ability to achieve my goals. I had goals of becoming a professional.. architect...engineer... etc. It was all possible too. Before the first event I felt life was too easy. I felt that I was too smart for school. Now I sit hear reminiscing my childhood and wished I was "smart" enough not to involve myself with a neighborhood gang.

I still challenge myself everyday but I find myself extremely forgetful. Will this ever improve if I keep my mind busy? Though social skills are important, I my value my ability to learn more.

Sorry for the rant. I found it really depressing when I told brother my situation. I have always looked up to him... the guy graduated from Berkeley. He seemed really stressed from the news. My parents noticed that I have changed and started stressing too. Therefore, I would rather learn to understand myself with the help of this board since only you guys are the only one who would truly understand the hardship of this tragedy. It really broke my heart when I learned that symptoms are likely to be permanent after a year. But I will pray, have faith, and be as optimistic as possible living the new me. If you guys can, would you guys be able to answer the questions scattered throughout the post... thanks!

supreme818,

The rude responses in social situations are not uncommon. I would suggest memorizing some responses. You can memorize a short bit about yourself. Also, a line for when a girl is hitting on you.

I need to sell myself with my business. I have the whole spiel memorized. My wife can overhear me and know exactly what I am going to say.

You need to accept that your normal responses may not be appropriate. You can then learn to withhold your normal response and take a breath, get composed, and respond with your memorized response.

You may want to memorize something about your Post Concussion Syndrome. Maybe something funny and self effacing like: I am recovering from a brain injury. Please tell me to shut up if I start babbling. I may get my 'merds wixed up'. Stress and noise can make it worse, like the stress of meeting a pretty girl/woman.

You might want to have some friends help you get your spiel memorized. Slow dawn. You are young and have plenty of time. There are plenty of UC students who have a minimal social life so they can graduate. Making study friends may make more sense. When your friend contacts have more structure to them, you may do better. The abstract social contacts may just overdo your brain.

Rrae is correct. You need to keep a journal. List your feelings, symptoms, triggers, and any other bits about your day. You will be able to look back and understand how to improve your day by seeing patterns of triggers.

I don't agree with her intensity of note taking. To me, it would increase the stress load. You will need to find your own level of comfort. Digital recorders can be helpful. I have tried many of these steps but I struggle to remember to use them. By the time I have the pen and paper ready to write the note, I have usually already forgotten what I was going to write down.

You may do good by repeating something to yourself audibly. Talk to yourself. The repeating may improve your recall.

Does your school have a psychology department? Maybe you can have a neuro-psychological assessment. It will help you understand what symptoms are real and what are just you over-reacting. The confirmation of symptoms will be worthwhile.

Nuff, for now.

My best to you.

These symptoms flare up from day to day. Its very inconsistent depending on the stress level. If i drank the night before, the next day would be an unproductive one. There are days where I feel as if im fine and days as if im walking through a fog. I guess I would have to put my social life aside for now and focus in school until i get better. any advice on improving my memory?

First, stay off the alcohol. Maybe a beer a day maximum. A hang-over is the brain's toxic reaction to the alcohol and its metabolites. Your brain is very sensitive to toxins.

There is some research that indicates that relapses (decompensations) of symptoms are a step backwards in your recovery. You want to avoid any activities that cause a return of symptoms. Otherwise you will find yourself on the roller coaster of getting better, getting worse, over and over again. The roller coaster can lead to serious depression not to mention mess up your grades.

There are plenty of students who have active college social lives without alcohol.

btw, were you ever a binge drinker from time to time? Especially as an adolescent? Research shows that adolescent binge drinking leaves your brain much more susceptible to later struggles, especially with alcohol. The adolescent brain is too busy trying to mature to tolerate the assault of alcohol.

I lived through decomps during college and know your struggles. It only took one beer to tell me how sensitive my post concussion brain was to alcohol. I was a mess the next day. My brother related later to me that he could tell that I was hung over. Wow, just one beer.

My neuro when I was a high school sophomore and having serious cognitive problems and absence seizures from a concussion during soccer had warned me to avoid alcohol.

would you think vision therapy be helpful? I notice my eyes wandering a lot when I think.

eye response
 

hi and welcome

the response of the eye,s is one of the few outward signs of injury, slow tracking,with the eye,s is indicative of slow processing and what I term white out moments, and slow verbal response, that causes us social problems , embarrassment, can turn to anger or anxiety at your age, self image is so important and your peers unsympathetic, us older ones , still have issues but maybe thicker skins

the above advice is all good, a second impact can trigger many things, not leased the feelings associated with vicious attack you suffered

believe me ,I know how that kind of thing can effect you

the guys and gurls here will help all we can, but a good nuro psychologist, and maybe some light therapy may help you also, and acknowledge, what you are going through

age is on your side

best wishes

Experience with Neurotherapy
 

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?

Mee too!
 

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...

Thanks guys. You guys are really helpful. What would your guys advice on attention problems? Its really hard for me to read sometimes. My eyes tend to bounce around and I cant really understand what i have read. Will further reading benefit me? I get tired very easily after sustaining a long conversation or reading. I hope this goes away...

supreme,

Your screen name makes me think of pizza. LOL

The reading problem is common. Try to determine if you have more difficulty with different types of reading material. I cannot read fiction, especially if it has very descriptive writing. Too much information to try to hold in my memory to make the story make sense.

I also struggle with long line lengths. My eyes get lost trying to keep my place, and even more lost trying to find the start of the next line. Try using a blank piece of paper to help you follow the line you are reading. You may even need to cover the text you have already read if it distracts you.

Long conversations can exhaust my brain. I had a one on one meeting that lasted almost two hours. I was finished for almost a week recovering my cognitive strength.

Try pacing your conversations. You may even do better if you avoid conversations in a room with others talking. The back ground voices can overwhelm you brain.

The important objective is to avoid overwhelming or exhausting your brain. This slows recovery. If you start to get 'spacey eyed,' your time is up. Do something else, even if you have to excuse yourself from the conversation.

Hope this helps.

My best to you.

this will likely not go away huh... :/

thanks
 

wow thanks for asking the questions and for all the answers too from everyone i got alot from it all
i learned about what i call 'bothies' what is the symptoms from stress and brain injury can be exactly the same so keeping stress down however you do it really has been helping me...
i am so happy to have found this place , i have tried to explain to my family what it is like for me but well i guess i need not tell you how difficult it is....
:)

Concentrate on Concentrating
 

I just went to see a neurologist and he said to spend at least 15 minutes a day focusing on focusing on a chapter of a book and testing yourself afterwards to make sure you are remembering and then later make sure you still remember. He said it doesn't matter what you remember as long as you do remember some stuff.

Yeah! Mine is constantly trying to blame it on something else and sending me into tons of docs who all just kind of say yes you have PCS and no there is nothing to do about it.

Family is the hardest. When I am at college on my own I can handle being ill because I can just hole myself up when it is really bad and I can just get away. At home I cannot get away! And they know me so well that they know when I am feeling really sick so I can't just ignore it as easily. Also it is way too easy to get ticked off at family :(

poulsp and Margarite,

If you will post your email address or send it by PM, I will send you the doc file of Dr Glen Johnson's TBI Survival Guide. It is great to have family read it. They will have many ah ha moments as they recognize your symptoms.

If you post your address in a a public post, use "AT" instead of "@" to protect your address from Spam bots.

My best to you,

keeping the stress off does really help, I feel that not challenging yourself might lead to worst effects. I believe that the key to healing is challenging yourself at a pace that you can actually handle. However, I still have major problems with MEMORY and ATTENTION. I really hope this heals even if it takes a decade... I am patient....

supreme,

From what I have read from others and from my own experience, the challenge to take on personally is much simpler. Challenge yourself to find new ways to do the stressful or difficult things. These are the work-arounds and accommodations I often speak about. As the stressful tasks become easier by using work-arounds and other accommodations, the PCS subject tends to slowing return to the old ways of doing the stressful tasks.

I find myself taking on tasks now that I could not have even considered early on. Sometimes, I will notice I am hitting my limit and need to revert to using my work-arounds, etc.

Having other ways to complete a task makes it possible to attempt those tasks without frustration. You may find that you can be 100% during your best times, then need to revert to using work-arounds during your bad days. Either way, you have access to a fuller life by combining the good days and bad days assisted by work-arounds.

In the end analysis, the things we have to put off or avoid completely can be replaced by other activities and skills. The re-invented NEW you has just as much access to a full life just in a different way.

The muscles need to be exercised to get stronger. The brain has a different system of recovery and strengthening. Exercising the brain to fatigue is counter-productive. The best Brain Training companies have found they need to limit the amount of time spent doing a specific brain training task.

A simple way to look at how the brain works is this. It only takes three incorrect processes to create a bad habit. It takes seven correct processes to overcome the bad habit.

If we train the brain until it fails, it remembers the failing processes. If we train it and stop while it is still processing correctly, it remembers the correct processes. Whether it is muscle memory or cognitive memory, this system of training is highly effective.

Think of it this way. If you spell a word wrong, you can either focus on the mistake or focus on the correct spelling. Focus on the mistake and the mistake will likely be repeated. Focus on the correct spelling and you are likely to get it correct the next time.

For those of us with PCS, we often make the mistake of trying to do too many things at once. We used to be able to multi-task without any problems. This can cause mistakes in all of the multi-task. If we break the tasks into each single task, we can better preform each individual task then add the next task. All of the task get done successfully. It may take longer than if we did multi-tasking, but it took less time than attempting to multi-task and failing and needing to correct the different tasks.

btw, I started typing 'taks'' instead of 'task'. Once I started misspelling task, I have misspelled it throughout this post. Lots of red squiggles to go back and correct. Just an example of how quickly the brain develops bad habits.

As you work at reading, try to find the type of reading that is easiest to do. It will keep some of your reading function working. Then, as you get stronger, you can start to introduce the other types of reading. Have you had your visual system checked? Horizontal nystagmus (the eye jerks as it tries to move side to side) is common with PCS. It can make reading difficult. Also, some have found they need a prism correction prescription for glasses. This helps the eyes converge properly on the target object. These problems can also make depth perception difficult.

There can be eye muscle control issues or the brain can have a difficulty 'stitching' the two images together into a continuous image or a bit of both. This stitching takes a lot of brain processing. When I am fatigued, this is the first thing to go if I do not put an effort out.

I hope this helps.

My best to you.

I was finally approved by the school physician to go talk to a neurologist to check my eyes. I do get extreme double vision once in a while depending on my stress level. I was also wondering if you have noticed a flat personality. I cannot hold conversations anymore. This is the part that saddens me the most because I can't hold anymore small talks, flirt, etc.

Be prepared for the neurologist to send you to a neuro opthamologist, or some type of opthamologist. In my daughter's experience an opthamologist is most likely to tell you to wait a year or so and see what happens.

Bring up the option of seeing a vision therapist or optomitrist instead and see what your neuro thinks of that. I don't know why exactly, but there seems to be a turf war between opthamologists and optomitrists. It's like seeing a surgeon vs. a chiropractor. Once tends toward medication and surgery while the other is more about non invasive, more natural treatments.

Supreme,

PCS can cause a flat personality or even a roller coaster personality. I have to 'mechanically' portray an acceptable personality. Many social skills do not flow naturally for me anymore. I have to mechanically sort of fake it.

Medications can also cause a flat personality.

A common diagnosis with PCS is schizoid personality disorder. It is where the person does not properly connect with others. Wikipedia will have a more complete definition. I have two thoughts about a schizoid diagnosis. Is it a physiologically caused disorder or is it a coping mechanism? When you get easily overwhelmed in social situations, many tend to back away from social contacts. Sort of a chicken and the egg issue. Which came first?

Something I need to do is rehearse my comments in a social conversation. If I just blurt them out, I make mistakes and get confused. I also often tend to repeat myself.

This slower response can provide an opportunity to comment with a more thoughtful comment.

Regarding flirting. You still have your eyes. I believe the most impressionable flirting comes from a woman's eyes. After 30 years, my wife's eyes can still do it to me. Subtlety can also be interesting to others. You don't need to be "Chatty Kathy." The things you learn as you observe instead of talk can be very good for relationships. There is a saying. "God gave us two ears and one mouth. We should use them in that proportion."

As you look at your friendships, you will likely see that a good portion are based on idle chat. Very few are based on in-depth conversations. The in-depth conversations are worth the time to slow down and think about your comments.

I have to remember the old adage: Better to be silent and thought a fool than to speak up and remove all doubt.

Personally, I wonder what so many people have to talk about for such a long time. The lady with her cell phone implanted in her ear as she drives makes me wonder. There is a new term for children. Some are cell phone orphans. They have to compete with mom's constant talking on the cell phone. I have even sat at a stop light and watched people on their cell phones "listening" to the other person. Seldom do their lips move.

So, use your time to become a good listener. Great listeners are rare. They can make careers of listening and get paid big bucks.

Think about this. By listening, you can sometimes just say a few words that speak paragraphs to the other person. My wife's favorite comment is "Help me understand." It does two things. It shows you are interested in the other person's comments plus it causes the other person to think more deeply about what they just said.

There is a Bible verse that says, " Blessed are the meek: for they shall inherit the earth. " Matthew 5:5

We do not lose by being quiet.

My best to you.

You know what, I totally understand what you are talking about. At first I would blurt out inappropriate comments but I realize that I has caused me more trouble then I had thought. I am more careful with what I say now and I feel as though I am very quiet and more collective. I find myself to listen more than I talk but then I miss the days when people find me witty and funny. I can't seem to be creative and funny anymore :/ . Have you progress? I felt as though I have matured greatly since the accident. A lot of the thought process that I go through I really have to force myself to think that like. Because if i don't, it's not me. If only I can do it naturally..

Supreme,

Try to relax and take it slower. It took you your lifetime to become the old you. As you learn about the new you, it will again take time. I can be witty but I must be a bit more careful. My brain can come up with some off the wall witticisms that can be a bit odd.

Try to slow down in your pursuit of being outgoing. You still are getting to know the new you. Before you can introduce the new you to others, you have to finish meeting the new you for yourself.

There are some oddities of PCS that make the brain think strange ways, compared to the pre-morbid ways. Rigid thinking is a common trait of PCS. The brain can get stuck in a precisely thought out but somewhat stubborn thought. Some would see it as Obsessive like thoughts. My severe TBI friend lives 24/7 with this symptom. Most PCS subjects have more ability to recognize these different thought patterns and work to be more flexible.

So, try to relax and give yourself more time. The process of PCS can be long. The mix of symptoms appears to be constantly changing in some. A realization that 'This is the new me for today, or this morning' may be helpful. It's like the brain rests different parts of the personality and cognitive functions each night. When you wake up, you need to figure out which personality woke up with you. At least that is my experience. My wife could probably describe this better as she sees me from the outside.

Some days I am more outgoing or proactive then other days I am very reserved. For women, this can be complicated by the changes in hormone levels.

My conversational creativity is much more subdued. That is why I have learned to rehearse my comments. The witty comments need to be received as witty and not weird or odd/stupid sounding.The PCS sense of humor can be strange. Just sit in a discussion group of 15 TBI and/or mTBI people and you will see what I mean. We can be an odd lot. But, we as mTBI persons have much more tolerance for each others oddities. Our non-PCS friends need to learn about the new person we have become.

It takes time. Don't be afraid to explain that your PCS has caused some personality changes. Your true friends will understand.

btw, When you reply, if you use the reply button to the lower left, it will not copy the previous post. The lower right reply button copies the prior post.

Just an odd way the forum software works.

My best to you.