The High IQ TBI

In Brain Injury, High IQ (HIQ), High IQ TBI, Research by Emerson Jane Browne92 Comments

The thing about humans is that (at least prior to a brain injury) we all think everyone else thinks the same way we do. Therefore, if you are bright, dumb, or somewhere in between you think everyone is just like you and that you are nothing special.

Most people do not know they have a high IQ

… unless they have been told. Or in my case, I figured it out by lots of research when I was trying to understand what was going on with me.  Later I found out about some old test scores and then, got scored again as part of the Neuropsych Evaluation when my brain injury was finally diagnosed.

Giftedness is a double-edge sword.  There are benefits that cut one way but difficulties that cut the other.  I wrote a post about the questionable and common overrating of the benefits while ignoring the drawbacks quite a while back entitled: High IQ is Overrated! Or is it?

We are different.  We are misunderstood; even by ourselves.

In fact we are often misunderstood especially by ourselves.  If we have not known we have a high IQ we have been beating ourselves up for not fitting in.

That their own perceptions and judgments are unusual may have been obvious since childhood, but they may have spent their lives assuming that this difference was a deficit, a fault, even a defect of character or a sign of mental illness (Lovecky, 1986; Alvarado, 1989). Thinking independently may seem foolhardy or antisocial.2

Gifted adults can misinterpret their complex and deep way of thinking as craziness. They can mistake their emotional intensity for emotional immaturity or see it as a character flaw. Because they have never been given information to explain what is “normal for gifted” they frequently experience frustration in the world, alienation, anger, self blame and emptiness. Without an adequate explanation of their gifted difference, they develop a facade with which they cover their authentic self; a face that they show to the world in order to fit in and so avoid disapproval or sanction.3

In fact, I still have a terribly difficult time admitting in here – announcing publicly – that I have a high IQ.  I feel like I am going to get stoned for saying it.  I envision a sea of onlookers heckling me; saying “Who in the hell do you think you are to claim you are gifted?!  You are just trying to make yourself seem special!”  The chorus of all of all my fears, failures, and the difficulties I’ve had fitting in are shouting in my head.  It is the music we, the “gifted” live with when we do not acknowledge or understand the way in which we are different and how to work with those differences.

We are a minority.

Think about it.  Even if we look at my IQ from the Neuropsych Evaluation that was given after my brain injury, for each person who has the same IQ or higher than me there are over 1000 people who have a lower IQ. That means that I think differently than the majority of the people I come in contact with .  That can set a person up to be misunderstood at every turn of their life and especially when dealing with a TBI.

I think understanding our giftedness is very important for any person with a high IQ to heal from and live with a TBI.  The very things that make us different are the very things that make our TBIs different.  Having a TBI and a high IQ is a very mixed blessing.

Characteristics of Adult Giftedness

So, first off, what are some of the characteristics of being gifted?4 (No one probably has every single one.)

  • perfectionistic and sets high standards for self and others

  • is highly sensitive, perceptive or insightful

  • fascinated by words or an avid reader

  • feels out-of-sync with others

  • feels a sense of alienation and loneliness

  • is very curious

  • has an unusual sense of humor

  • a good problem solver

  • has a vivid and rich imagination

  • questions rules or authority

  • has unusual ideas or connects seemingly unrelated ideas

  • thrives on challenge

  • learns new things rapidly

  • has a good long-term memory

  • feels overwhelmed by many interests and abilities

  • is very compassionate

  • feels outrage at moral breaches that the rest of the world seems to take for granted

  • has passionate, intense feelings

  • has a great deal of energy

  • can’t switch off thinking

  • feels driven by creativity

  • loves ideas and ardent discussion

  • needs periods of contemplation

  • searches for questions in their life

  • is very perceptive

High IQ and Brain Injury

Recently, I have been corresponding with two members on the TBI Survivors Network about the issues we face when we have a high IQ and have a brain injury.

When a person has a high IQ to begin with, they still have one even though they have a brain injury. We actually don’t lose it. Brain injuries are more like holes, big spots missing due to the injuries. But the part that is still intact still has the IQ which is the person’s “normal”. Your high IQ is a big part of the reason this is all so painful. You (and I) acutely feel how much has been lost. Or in the words of my doctor “The holes can go deeper in you, than for us mere mortals.” (Yes, he said that!)5

An IQ is actually made up of Verbal and Performance scores. With a brain injury there is usually a big gap between the two. There is in mine.  It is a classic sign of a TBI.  A big part of our frustration is that part of us still thinks and feels the way we always have but our ability to process and convey the thoughts and feelings is shot to hell.

How a TBI intensifies the characteristics of a High IQ

The loss of ability is only one of the many things that is amplified by giftedness. Let’s look at the above list of High IQ Characteristics with an eye on how a TBI intensifies the characteristics of being gifted. Image: Handprint pushing a Help button.

  • perfectionistic and sets high standards for self and others

We do not stop adhering to perfectionistic standards for ourselves.  We try.  But it is pretty ingrained in us.  We must learn patience and compassion toward ourselves.

  • is highly sensitive, perceptive or insightful

Highly sensitive means highly sensitive in every sense of the words.  Gifted  (non TBI) people tend to be highly sensitive to noise, lights, smell, and touch – to the point of cutting labels out of all their  clothing, for instance. A TBI increases all of these sensitivities to way beyond bearable!  PTSD does too.  And TBI and PTSD often come together. I firmly believe that gifted adults and children suffer far more acutely in the area of hyperarousal than someone with a more normal IQ who did not start out as highly sensitive to begin with.

  • fascinated by words or an avid reader

Aphasia is caused by damage to the parts of the brain that control language. It can make it hard for a person to read, write or say what you mean to say.  When you have a deep love of words and language it feels like a part of your very essence is missing to not be able to find words.  (I am so very thankful for the power of computers and

  • feels out-of-sync with others

  • feels a sense of alienation and loneliness

Heck, that is something anyone with a TBI feels.  It is probably exaggerated in the gifted.

A brain injury changes how we interact with the world

A brain injury changes who we are, how we see ourselves, how we interact with the world and our life. Most of these High IQ attributes below change with a TBI.

  • is very curious

  • has an unusual sense of humor

  • a good problem solver

  • has a vivid and rich imagination

  • questions rules or authority

  • has unusual ideas or connects seemingly unrelated ideas

  • thrives on challenge

  • learns new things rapidly

  • has a good long-term memory

We relied on our High IQ

Image: A maze in the shape of a question mark.

One of the biggest difficulties for Gifted/Brain Injured adults is that all of our life we have been able to rely on our ability to pick things up quickly, make the thought connections between disparate ideas, multitask, multi-think . . .  We relied on it even if we were unaware that we were doing so. Suddenly those abilities have been stripped from us.  That is huge. We are completely at a loss how to navigate life.  Even with a very mild TBI executive functions involving planning, multitasking, and sequencing are usually compromised.  Because the gifted tend to “coast” relying on the enhances abilities, this fall from grace is into an especially deep pit.

The Brain gets Noisy after a Brain Injury

High IQ traits:

  • feels overwhelmed by many interests and abilities

  • can’t switch off thinking

Again, what is normal to us is only amplified by a TBI. The way I would describe this for myself is that, yes, I definitely had these characteristics.  But with the TBI, especially before I got help, it felt like all the thoughts, interests, head noise were going all over the place.  It was like pre-injury I had a lot of colored dots swirling around in my head but there was a pattern and rhythm to them. I could somewhat control their path, channel them into useful, productive actions or thoughts. After the TBI it was like all those dots were still in my head but they were going every which way at a frenetic speed.  There was no rhythm or pattern.  I could not channel them because in the first place the channels were all missing and even if I could grab one ball and hold on to it when I went to grab a second ball I would lose the one I thought I had hold of; heck usually I would lose them both!  But they wouldn’t entirely go out of my head.  They would stay there bobbing and flying around just out of reach!

Compassion is a blessing

High IQ trait:

  • is very compassionate

Here is a key blessing.  Once we really start to get a grasp on what has happened and start to explore who we are now, we can turn our ability to be compassionate inward to ourselves.  Additionally we can also turn our compassion outward to all the caregivers who are working to help us heal and help us to learn and accept this new person inhabiting our bodies.  I think our ability to extend compassion also helps us to be a good coach, friend, and support to others traveling on this bumpy TBI journey.

Brain Fatigue is the opposite of pre-injury behavior

High IQ traits:

  • has a great deal of energy

  • feels driven by creativity

Can you say “Brain Fatigue”?  The lack of brain stamina is horrific.  You think 3 thoughts and feel like you need to go to sleep for an hour; in fact, you do!  It is like taking a car going 120 miles an hour and having it suddenly slam into a solid brick wall.  Who is this person who can’t function and can’t even stay awake?

After a TBI; only more so!

High IQ traits:

  • feels outrage at moral breaches that the rest of the world seems to take for granted

  • has passionate, intense feelings

  • loves ideas and ardent discussion

  • needs periods of contemplation

  • searches for questions in their life

  • is very perceptive

Again, I am going to cover this group of characteristics with a broad brush by saying “After a TBI; only more so!”  Because things are out of whack in our brain and our life, we can exaggerate any and all of these characteristics.

For most of us with a brain injury, our emotional processing /activity is still intact and fast because it is seated deeper in our brain. But our logic processing is significantly slowed because of damage to the prefrontal cortex. Therefore, we get flooded and overwhelmed by our feelings and experiences. Add to that that the slower mental processes makes it more difficult for us to partake in the “ardent discussion of ideas” and we feel mentally crippled!

High IQ helps TBI Recovery!

However, giftedness giveth also.  Though our giftedness heightens or amplifies the changes due to a TBI, our gift also gives us many advantages in healing and dealing with the daily reality of the TBI. I will close with another quote from an email I wrote to a friend on the TBI Survivors Network:

Though the holes can go deeper, for us there is also a great deal on the positive side to having high IQs. We are tremendously  capable of developing good compensatory skills.  We are tremendously capable of using the attributes of our high IQ to help us heal, and develop a life that works. It is why I want you to get to a good TBI center. You will be able to take the help they give you and really use it! You’ll see. It is not going to make the TBI go away. It is not going to give you (or me) our old self back. But it can give us a life worth living; a life we can enjoy.6


  1. The wonderful cartoon “Tis better to have loved and lost your mind” at the start of this entry is by Jeff Gregory of Jagged Smileand is used with permission.  I love his blog and his cartoons!
  2. Stephanie S. Tolan, Discovering the Gifted Ex-Child, Originally appeared in Roeper Review, August 1994.
  3. Lesley Sword & David Harrison, Gifted Adults, from the website of Gifted & Creative Austrailia This site is chock full of information for anyone wanted to learn more about Giftedness in Adults & Children.  I especially want to recommend their Articles page.
  4. Lesley Sword & David Harrison, Gifted Adults
  5. Emerson J. Browne, private email on the TBI Survivors Network.
  6. Emerson J. Browne, private email on the TBI Survivors Network.
Emerson Jane Browne
I am Emerson Jane Browne. I write about Brains, Apps, & Productivity, and many other aspects of Life. I speak to TBI support groups, speak and teach workshops at tech, music, and writer conferences. I consult with organizations on strategic planning and building a strong community.
  • Martin

    Hi my name is Martin a 36 years old gentlemen and I am saddly also a high IQ with a strong TBI due to a terrible car accident two years ago. I can’t find myself fit with the group of person that had similar injuries to me in my region and with your text I can easly see why I can’t fit anywhere. Your way to explain things in your text fit exactly like the way I see things. You arr the first one that I can feal that we can understand each other without seeing us. Thanks for writting it, thanks for sharing it and keep your good work that help the people like us that try to find a new path after a crash in their head… when we thought we had everything under control in our life.
    Sorry for any possible writting mistakes but english is not my main language, used to be excellent before my TBI but now we got to deal with our new life.

  • Angelo Fiorenza

    I cannot say it more succinctly than, ‘loving your work’

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  • Kay Verse

    My IQ went up 25 points after a bunch of brain injuries from falling during seizures. I can see things from different perspectives easier, sensations tend to blend together into the abstract, connections come faster, and pattern recognition misfires much less.

    I do feel like the description of a gifted adult sounds limited to certain types of giftedness, most especially the intuitive dominant sorts. It’s pretty much describing a clever ENFP.

  • Scrambled Eggs

    I have just discovered this site and can’t begin to describe how thrilled and comforted I am! I may not be posting on the appropriate page; but it was through researching “brain injuries/ being misunderstood” that the link to this post caught my eye. I found the article fascinating, and have read all 87 comments and replies- I can relate to so much of what has been said!

    My accident was in April, 2014 so I am approximately 3.5 years TBI. Like so many others I have experienced the rollercoaster with respect to symptoms, ADL, the perceptions of others, and dealing with the system. There has been some good and some bad; but a recent incident has left me more confused than ever so I am trying to read up on the matter.

    My first neuropsychological assessment was held almost 6 months post-injury. I was classified as a high-achiever who by nature takes longer to recover because of higher standards and expectations of self; and labelled as a workaholic which was impairing my recovery- because I was exerting too much cognitive effort and effectively causing more damage due to the mental strain… On the other hand, despite evidence of cognitive impairment on the testing; suggestion was made that I should be fully recovered by then, and that depression could be a contributing factor to the delay (with an ever so subtle hint at malingering! the word was never used; but the report referred to some of my symptoms as “inexplicable”). Still, a finding was made that I was unable to continue working at that time and I was referred for a long list of treatments. I had to go on long-term disability.

    I was in denial then because I felt like I could still work; I just needed more rest than I used to. Like some others have expressed, my job was my identity and my biggest source of satisfaction/ accomplishment. The whole time I was waiting for the neuropsych report (which ended up taking 6 months to be issued) I had the naïve expectation that I would be cleared to work so it was just a matter of waiting day-to-day until I could get back in the game. I even kept telling my co-workers that I should be back any day now; I was just waiting for this darned report. I felt that I had done quite well on the testing (I love puzzles!) so it never occurred to me that there could be a determination otherwise.

    Although the long waiting periods were unbearable; whether it be for reports or to get a call about treatments, I feel fortunate to have eventually assembled a strong team of specialists (including a Physiatrist specializing in TBI and a Neurologist) and had the opportunity to undergo numerous tests and treatments which have thankfully been covered by my healthcare system (MRI’s, CT’s, EEG’s, and therapies including COGSMART, Vestibular Physio, MBCBT, and psychotherapy for Positive Coping With Disabilities). I also suffered through a so-called cognitive work hardening program, but it was sponsored by the LTD insurance and the beginning of the “bad” I’ve been experiencing. My current dilemma is: what happens when your treatment/ health & well-being are commandeered by an insurance company? When your entire future, stability, and ultimately your life are being dictated by non-medical professionals? They have taken control of my recent treatments since they are providing the funding. I am not seen as a person but more like property since I am just the subject-matter of contracts with treatment providers.

    I was sent for an IME after the insurance decided that they were not satisfied with or keen on my Specialist’s recommendation for an Occupational Therapist to be assigned, and really didn’t seem to know what to do about me. My second neuropsych assessment held in May, 2017; noted some improvement from the first but also made a diagnosis under the DSM-5 of Mild Neurocognitive Disorder due to Traumatic Brain Injury (without behavioural disturbance). The IME testing found subtle frontal system dysfunction but high-average to superior performance across most cognitive domains (I grudgingly admit low-average and borderline/impaired ranges in verbal processing speed and recall of that complex geometric figure- grrr!). The report upheld the recommendation for an OT, and also referred me for Speech Language Pathology and Noise Re-integration Therapy.
    I began SLP sessions and am halfway through treatment with a month remaining. Which finally brings me to my point (obviously I have trouble being succinct). Last week, the insurance advised me that conversations were being had about/without me to determine my future- while I am in the midst of treatment with about 2 months until next steps are known (factoring in delay for the report). I did NOT react well to the news. I was already overwhelmed; struggling to meet a deadline for homework which I was finding challenging; and didn’t have time to deal with that wrench in the works on top of everything else. I found it disruptive, premature, interfering with my focus on my treatment, and I feel like my head exploded from information overload. I couldn’t sleep, couldn’t think straight, couldn’t complete my homework to my satisfaction… my anxiety was through the roof and I felt like I had no time to get anything done.
    When I tried to express my concerns it did not go over well. I wasn’t able to contain my anger or emotion- I would say that my disinhibition definitely flared up?! I seemed to say all the wrong things and only made things worse. The feedback I received indicated that I was being judged and criticized for being affected by the situation. That it was proof of my difficulties with time management… It was suggested that I should have been able to handle it- and a parallel was drawn to returning to work and not being able to deal with interruptions or meet deadlines. I tried to clarify that work is familiar and interruptions are fairly typical in nature- far from a life-altering magnitude. I should add that I have always thought differently and that used to be seen as an asset. Now I am just labelled as brain damaged and even “often has a bewildered look on her face”. In my defense, I always had that look when presented with illogical nonsense!
    What is confusing me and I can’t wrap my head (in its current condition) around is how on the one hand, it has been documented that I have trouble with information processing, completing tasks, disinhibition, fatigue, well there’s a long list but the point of many of these therapies has been acceptance of the “new self” and learning strategies to cope and do things differently. On the other hand, I don’t feel like any of this is taken into consideration when I am told that I shouldn’t react to a curveball like I did- that I should be able to handle everything and anything. That makes me feel like I failed to measure up.
    It just feels like a Catch-22. Which is it??? Am I supposed to work hard at acceptance and treatment and new strategies and have time to implement what I am learning? Or am I held to a standard of a non-brain injured person and it has been pre-determined that I will fail. In which case- what’s the point of trying? I am so discouraged.
    I apologize for the length of this but it feels a bit better just venting. I doubt anyone will read the whole thing, but maybe I’ve helped some insomnia out there if anyone tried ha ha

  • Igor


    I am 20.

    I had a mild concussion last May, other mild one in October and one more mild one 10 days ago… I say mild because compared to how some people get concussions, I know that impact legitimately was not THAT bad. Every single one of them while I was excessively drunk, 2 fights and one bump off the wall with the tip of my head. I made a decision to take a break with alcohol for a while! But that’s another topic.

    Since my first concussion, I definitely felt like I lost in brain power. Second concussion, I wouldn’t say that I legitimately felt too much of a difference. After my most recent one, after I was beaten up, for some reason, while I am recovering from most obvious symptoms like headache and dizziness, I literally have a clarity in life and achieved what I lacked in the last 3 years of my life: determination to study and succeed academically(for last 3 years I had major problems but mostly because I couldn’t get myself to study at all, not because I can’t). I am just waiting for my symptoms to where off. Now, being a student at the University of Toronto and also being very anxious person(I only recently started to address these problems, schedule for the first doctor visit for my anxiety in a week), I want to thoroughly check myself, if my brain lost any skills.

    This is a very weird feeling, when I feel like I am still same me but I am worried that I am not. I can’t even explain. Regardless, this 3rd concussion in 13 months became a REAL WAKE UP call for me, in terms of stopping drinking too much, doing drugs recreationally and just generally wasting my time. I know all 3 of those concussions were not TOO BAD. I am not trying to convince you or myself, I know this because my 3rd happened by being hit worse than previous 2 and I, with a kind of self-induced anxiety I thought I am done for life after the first one(read too much scary articles and literature), what’s the point of studying if I can never achieve my full potential and stuff like that. After being to the ER room, doctor literally told me “don’t worry about it too much, fuck it”. However, 10 days later, I still feel acute symptoms but they are way better than the first or second day(worst day was probably day 3 or 4 actually). To be honest, I know I can’t tell you my WHOLE story and EVERYTHING that bothers me(not just BI injury related, I am actually worried if I killed my brain for good with too much marijuana, hence I stopeed after 1.5 years of moderate to heavy use(I started only at 19, now 20.5)). My questions is, having sustained 3 not really catastrophic concussions, do you think I have a capacity to recover to theoretical 100%? I don’t think I became dumber, if anything I became way smarter and aware than I was pre-injuries and pre-drugs. But there is just this nagging feeling that because of my mild concussions I will never be able to achieve THAT potential I had at 19. At the same time, I never REALLY tried to study and now, when I am determined to study, I am just really afraid I messed up myself forever with a stupid behavior aka smoking marijuana and getting hit in drunken fights.

    • No you have not permanently messed yourself up forever. Yes, you have the capacity to go beyond 100% improvement. Note that I did not specifically say recover. This is more about claiming your potential and working towards it.

      I strongly encourage you to read the book The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science by Norman Doidge. I think that book will help you a lot in many ways. It will explain neuroplasticity and allay your fears about permanent damage; it will give you a great base for the changes you are making, give you support for healing, and it will also help you with school. Doidge is a great writer and his book is one of the most encouraging ones out there for good brain health and recovery.

      Recover is a funny word when it comes to brain injuries. The brain is always changing. It is not like healing a broken leg and therefore being able to run again. Not knowing anything about the damage your brain sustained from 3 concussions in 13 months, you may have some areas you have to work around for a long time. Embrace the challenge of finding work arounds! You will be a better person for it and you will build a much better brain.

      Another book that you might want to read (but read Doidge’s first) is Smarter Faster Better: The Transformative Power of Real Productivity by Charles Duhigg (If you have not read it, there are also a ton of “summaries” of the book here but the book is far, far better.) I am currently reading this book and LOVING IT!! It has so much in it that is helpful to making our brains work better.


  • Justine Rose

    Wow. Your article nailed it.

  • Charles Bynum

    This is the most accurate portrayal of my TBI experience that I’ve ever read. Every word of it struck home. I must commend you on both your writing skills and your ability to perceive the intricacies of the human experience. I’m one year post sub-arachnoid hemorrhage that nearly killed me. I noticed very early on that something was not right in my brain. I compensated so quickly at first that I missed many of the signs of injury, but I was able to detect myself doing that and stopped compensating reflexively so that I could learn coping skills. That proved helpful. I also realized there was a thin line between rewriting the narrative of “me” and losing myself to absolute insanity. The mind, it seems, must be tethered to something other than just itself or it will slip into madness. I’ve also begun to wonder. Does a TBI sufferer who has a low IQ experience the same problems we do? Perhaps in the case of TBI, ignorance really is bliss! If a stupid brain gets injured does it notice any deficit? Is it the more intelligent who struggle because they know what a high functioning brain should be able to do? Perhaps we’ve been looking at this all wrong. Perhaps the difficulties we have stem from having a brilliant mind trapped in a brain that no longer allows the full expression to which we’ve grown accustomed. At the very least, I must agree with John Stuart Mill who said it is better to be a sad Socrates than a happy swine. Well done Ms. Emerson Jane Browne. It would seem that the name “Emerson” is spot on!

    • Thank you Charles. It has taken me a while to reply back because I have been thinking about your question regarding if ignorance really is bliss in the case of brain injuries.

      It is an interesting question. Of course, I do not have a clear cut answer because I am who I am. But I have to wonder if you are on to something. I think everyone who has a brain injury feels the effect of it and mourns the loss of what they had pre-injury. But what I have observed is that some people who likely are around the normal range of IQ seem to adjust to it more easily and not fight as hard to remap and regain what they have lost. There is a complacency that I personally cannot and do not want to experience.

      Thinking about it this way also may explain why we have so much difficulty getting the help we need in rehab. Most rehab departments work mainly with people within the normal range of IQ since they are by far the majority. Getting a patient like me, where I have worked my butt off but have recently hit a new wall, they are at a loss of how to help me through it so I am bumbling through on my own.

  • mt

    Thank you for this post. My story is a long one, but very similar to what you and others wrote. Years after my TBI, I had a neurological work up with a neuro-psychiatrist. This was when I learned that my pre-morbid IQ was at the genius level. Since my older sister is so much smarter and was IQ tested at a young age as a genius, I always thought I was stupid in comparison. In reality our talents were just in different areas. Anyway, my IQ dropped to mid high average and my post TBI processing speed is very slow. While going over my results this doctor explained that intelligent people have a more difficult time with TBI’s because we notice the loss more severely than someone with average intelligence. It is a hard road, but running across this post makes me feel less alone.

  • Wrongway

    Ms. Browne: I really appreciated this article. My wife asked me to read it. She has TBI and at the same time is one of the very brightest people I know. We met after she was injured so I have no reference to before but I know two or three things: She is highly intelligent and often frustrated by the fatigue and memory loss. I try to be extra understanding when she gets this way. She has moments of such clarity I often forget to be extra understanding when she goes through the above mentioned fatigue and memory loss. I’m considered fairly bright by most standards but my wife continually blows me away with her ability to compensate. She is an endlessly fascinating woman of such depth and character. She’s also beautiful and I praise her for both brains and beauty. I believe we are both enriched by this relationship and I want to be encouraging. Do you know of any couple specific things we could do together that would help her? Again thanks for the article.

    • Hi @honkabilly59:disqus. Thank you for asking. Hopefully I can help you go some rightways too.

      First, have you both read The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science by Norman Doidge? He also has a second book The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity:. (On the latter book, skip chapter two and then go back and read it later on.)

      The reason I am suggesting those books is the excellent explanations and stories about how neuroplasticity and remapping in the brain works, and how incredible it is. I am NOT necessarily recommending to go chasing after any of the therapies he writes about unless there is a specific problem that your wife has. Most of the practitioners mentioned in the books are overwhelmed by the requests they continue to receive.

      As the books explain, using compensatory strategies actually helps the brain to remap those areas. For example, using a dayplanner – digital or paper – to improve organization and scheduling actually helps the brain improve those skills.

      So on that note for things you could do together that would help, I have a few suggestions.

      Whatever challenges your wife is having are there things you could do that would help the remapping? Could you sit down together every Sunday evening go over your upcoming week – meaning what is going to be happening for each of you and what you need to prepare and plan? I personally am a BIG fan of post-it notes. They can be used for reminders and also for a lot of fun messages.

      Another thing that might help (which I know I have appreciated) is for you to be alert to her needs. Often we do not realize we are overdoing it until we are hit by a Mack truck of brain fatigue. I have greatly appreciated my partner keeping an eye out and checking in with me to help me catch a problem before it became one.

      One other book I would recommend to both of you – just as a couple – is a great book by John Gottman. It is a good book for all couples – not just for people who have a brain injury. The Seven Principles for Making Marriage Work: A Practical Guide from the Country’s Foremost Relationship Expert There are a bunch of exercises couples can do together. A lot of them are a lot of fun and also enlightening. (John has a “Love Lab” where he has done phenomenal work observing couples. Google him and you will find a lot about his research.)

      Lastly, brain injuries just take a very, very long time! Be patient and encourage patience.

      And celebrate the small changes because they matter. They are progress markers. For example, I clearly remember the first time I could remember the four numbers on a bulk bin in the grocery store long enough to write it down! It was a small but also a very big victory!

      Wishing you both all the best.

      • Wrongway

        Thank you Miss Em. I’ll look up those books and give them a read. I believe I’m more optimistic about my wife and I’s ability to create a much better life for both of us than when we met. The Lord is good and we are wonderfully made. Very glad I found your website. God bless you and merry Christmas.

  • Paloma M Lin

    I can only echo the many comments below in saying that your post is both enormously comforting and heartbreaking, and I am grateful to you for sharing your experiences with such eloquence! Like many of the folks commenting here, my brain injury was not immediately diagnosed. My initial injury happened quite recently — in July of this year (2016) — during a dental surgery in which I was given nitrous oxide anesthesia and suffered hypoxia (lack of oxygen to the brain). In the first two months after the surgery, I experienced mild memory impairment, difficulty in comprehending abstract ideas (I was in academia), mood swings and decreased emotional control, and general fatigue and tendency to become completely overwhelmed when trying to organize/execute multi-step plans. Alas, given my newfound knowledge of mild brain injury, these early symptoms make quite a bit of sense. At the time, however, I did not pay too much attention to them as my doctor, though aware of my surgery, seemed certain that it was merely depression and anxiety.
    To complicate matters, I also began to experience extreme fatigue and weight loss. Perhaps due to the stress of the many tests my primary physician ran to investigate the weight loss, perhaps due to what I now know was a brain injury, or perhaps due to a combination of both, I developed serious insomnia. As is common in our day and age, my doctor, still concerned that my problems stemmed primarily from a psychological condition (anxiety), prescribed me first Xanax (0.5 mg) and then Valium (2.5 mg) to take nightly. After about a month of using these benzodiazepines, I noticed a dramatic worsening of my cognitive state. At a general level, I began to feel constantly confused and disoriented, operating in a state of complete brain fog. I found myself struggling to comprehend and retain information I had read, even from one sentence to the next. In addition, I developed fairly debilitating visual-spatial disturbances. I felt (and in some ways still feel) like I was losing my mind — I found myself unable to process written information, unable to problem solve, operating in a state of slight detachment from the world. The basic act of thinking has become as difficult as moving through molasses — slow, murky, and pain-staking.

    Like many of my fellow brain injury survivors, my complaints made little sense to my family, friends, and most of my doctors, who found anxiety (and therefore continued benzodiazepine usage) the likeliest answer. It was not until I sought out an expert ophthalmologist, whose examinations of my eyes (which were fine), led him to suspect that I had, as he put it, a dysfunction in my “higher cognitive functioning.” My brain, he said, wasn’t processing the visual input provided by my eyes. When I explained the host of cognitive symptoms I was experiencing, he got to work researching with some colleagues in neurology. The answer (though not the solution, of course) became fairly clear: I had suffered a mild hypoxic brain injury during surgery which was severely worsened by my prescribed benzodiazepine use. Though my doctor claimed to be unaware of it, there are numerous studies showing that benzodiazepine use in brain injury patients not only worsens cognitive impairment but, in the words of one study, “delays indefinitely” any organic recovery.
    Obviously, by this point, I am no longer taking the benzos or any prescription medicine. However, the cognitive problems remain in full force. I know that few of us here are doctors, but it is difficult to continue thinking that, unlike many TBI survivors, the small cognitive gains which rehabilitation and time can produce are impossible for me. I share my story for the selfish reason that I’d like to be part of this incredibly supportive community and absorb some of the miraculous hope that Emerson Jane Browne shares. I’m also wondering if anyone knows of good brain injury specialists (traumatic or acquired) in the wider San Francisco Bay Area. I’m currently in a bit of medical wilderness here, as local neurologists seem to know little about brain injury.

    Lastly, though, I must reiterate my thanks for this post and the many others on Dancing Upside Down. Emerson, I have shared these blogs with my family and loved ones, and you have been able, in ways I have not, to relate the nuances of a brain injury which those with high IQ or education are apparently able to “cover up.” To hear you and others writing about the disbelief you encounter when explaining that, despite appearing or even functioning somewhat normally, your mind is jumbled and thought itself difficult — this has been comforting as nothing else can be. To experience a brain injury is to experience the most intimate and fundamental loss of self, and you have put into words both how that feels and how to navigate that seemingly insurmountable challenge with courage and grace. Thank you!

    • @Paloma, Thank you so much for your beautiful comment. I am so happy I could help.

      Stop looking for a neurologist. This is not their area of expertise.

      You need to find a good Physiatrist who specializes in brain injury, and better yet, one who works as part of an interdisciplinary team.

      A physiatrist is a specialist in rehab so not just any physiatrist will do; it has to be someone specializing in brain rehab.

      On a quick search for San Francisco area the one that looks most promising from its description is Comprehensive Integrated Brain Injury Rehabilitation Program offered by Sutter Health. There may be others that will come up on a more extensive search, but the reason I like this one is the “comprehensive integrated”. I received phenomenal help up here in Seattle from a similar program with almost the same name.

      As you have described above, brain injuries affect our lives on many levels. When a program such as Sutter Health’s is comprehensive and integrated – including “Weekly interdisciplinary team conferences” – it means that the program is designed to address the issues on all levels.

      I am sure there are other good programs in the San Francisco Bay area. Stanford is going some interesting brain research so likely will also have a good rehabilitation program.

    • BlueGreen

      hi, I had thyroid cancer and the mass was slowing blood flow to the right side of my brain. I am more towards San Diego, but was,wondering if you found a doctor that “gets it”. Thanks, have a good one.

  • Tess Rogers

    I also read this blog with tears, but I am thankful to be able to. I was an International Baccalaureate in high school, but I was never very into school performance, and my teachers let me coast because they respected that I studied what interested me, independently. I would have rather studied dance, and was unsuccessful in college, for many reasons, but mostly emotional issues. I was deeply scarred as a child which is probably what led me to a life of the mind once I learned to read.

    I had a MBI when I was 19 and the pain issues from my injury led me to have an unnecessary, unrelated surgery which ended in surgical injury due to the tourniquet being in place for 50% too long. My circulation was even further damaged and I turned to alcohol more and more. Somehow I was able to recover emotionally from these things, perhaps because my brain was much simpler for a few years and learned better ways to take care of myself.

    Once I started having more normal function (from biking 120 miles a week, mainly), it was hard to accept what I had become while I wasn’t as aware. I lost a lot of friends, and even more when I was in a second hit and run accident on my bike. It took a long time to realize my spaciness was seizures, and my social lapses did not define me necessarily. It took ten more years to find a path that both healed me, and put my physical strength and knowledge of medicine to the best use. I became a massage therapist, and I recommend massage to anyone who has had brain injury.

    I am still not what I was, or might have been, but I am older, better, and I try to remain grateful. It is still so hard to make and keep friends, to accept that aphasia is permanent, if intermittent, and to stay grounded when things get rough, but I have literally saved people’s lives, numerous times, and kept many more pain and drug free.

    I was recently in another accident, and have been having emotional setbacks, and increased memory issues, so reading your words has helped tremendously, on an especially hard “brain day.” It’s hard to maintain great exercise and nutrition, when I have spent a lot of time marginalized, and misunderstood, too, but every good choice makes the next one easier, and discernment just takes a little more time. Both accidents that I caused were due to hurrying, too, so I try to remember to take my time, and to take time for self care.

    It is very heartening to see medical marijuana being legalized so many places as well, and to have contributed to that and many other activist causes. For many years I felt I had to rise above the stigma, and law, just to take something I felt saved my life every single day. Cannabis actually helps me think more clearly, both by removing the obstacle of intractable pain, and reducing vasoconstriction.

    Incidentally, I also discovered that by getting the munchies I was actually helping repair my brain while eating a high fat (and high protein) ketogenic diet! I was a vegetarian for years, but now I notice a huge difference in brain function when I skimp on animal fats. Spread the word, and the butter!!

  • angry vegetarian

    I cannot believe I just now found this article. You have no idea how much reading this helped shine some light in some very dark places in my life right now.

    I only found out about my high IQ in my late when I was about 28 or 29 (I’m 33 right now). The only people I have told this have been my wife (who directly asked me one day) and my best friend of nearly 20 years (I just told him two days ago).

    This past August I received my second concussion in barely 5 months (the first one being in March). To say it has affected me in negative ways, dulled the characteristics that make me who I am, and brought upon incredible mental and physical suffering would be one of the greatest understatements I could make. No one around me understood the basics of a concussion, let alone why I was suffering so much. I’m still having a terrible time finding those bits and pieces of myself that made me unique, intelligent, well-spoken… the list goes on. To make matters worse I just started having seizures two weeks ago – another depressing setback from the brain injuries I’ve sustained this year. I’ve had to withdraw from my last course of my masters program two semesters in a row now. To make matters worse I am also a teacher. My concussions have made me develop a stutter, I can’t keep a consistent thought or conversation going, and I’ve lost the memory of the basic fundamentals of my subject area. Again, all of who/what I am just feels like it’s been broken into pieces and I’m constantly running around trying to find them.

    I know that I’m rambling and I apologize for that as it is something else I have a hard time with now. I want to thank you again for this. I am keeping this open to read tomorrow and also to share with my wife. Amongst all the mental and physical setbacks as well as how these injuries have negatively changed my career, financial state, and now with all the legal battles I’m facing – I desperately needed to find something like this.

    • Thank you so much for your comment! It is comments like yours that keeps me writing.

      @Veggie, Your brain is still in a very acute stage of injury. August was only two months ago. What you are experiencing right now (and may continue to experience for a few months) is likely the worst in symptoms.

      With a traumatic brain injury new symptoms can show up sometimes up to 6 – 9 months out from the actual injury. So please do not despair when new symptoms appear or weird things happen. You are not “getting worse”. Your brain is responding in a very normal way. AND IT WILL GET BETTER!

      I know this may be difficult, but is there any possibility you could take some time off from teaching? It sounds to me like you need some healing time.

      Brains really do need some rest to heal and regrow/remap the damaged areas. By “rest” I do not just mean sleep, though sleeping a lot is part of it. I mean rest from working your brain so hard when it is injured.

      Think about it: If you had a torn hamstring you would not be out there running a marathon no matter how great of a runner you were before the injury!

      Especially if you can take a couple of quarters/semesters off now, while you are in such an acute stage, it will serve you very well in the long run. Please consider doing it. Run a Go Fund Me campaign it you have to! But you need some time off.

      Where are you located? Are you able to find a good Physiatrist (rehab doc) who specializes in brain injury? Or do you have some other good doctor who really understands brain injuries?

      One thing to watch out for is depression. It is extremely common with a TBI, especially multiple TBIs. Medication really helps as long as you are seeing someone who understands the medication that works for TBI type depression. Read my post: Major Depression is Common After a TBI.

      Have you read (or listened to) Norman Doidge’s books? I highly recommend them. I think you would get a lot from them.

      His first book, The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science is amazingly good and will give you a lot of relief and hope in regards to healing/remapping your brain. His second book, The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity, is even more directly related to stroke and TBI recovery but I would still recommend reading The Brain That Changes Itself first.

  • Gregory Norris

    I wrote a few months ago about dark spots or “chunks” of brain turning back on like a light switch. I had one dark spot which I could feel in my mind turn on in July. As with the other times this has happened, I experienced a cataloging of some sort. It felt as if I were watching a movie/memory where every single frame is a memory of a smell, specific object, concept and such.
    Ex: The tree outside my old apartment, the smell of the public library, the meaning of the word apotheosis, the color yellow, how to make 3d fractal animations, increased appreciation for music, upper level reasoning skills etc… etc… etc at 15-20 frames per second.
    One other person here has experienced a similar “turning on”, and I am curious if anyone has experienced the re-sequencing event?
    For me it was about 10-20 distinct and unrelated concepts or memories per second for approximately an hour. It was not at all unpleasant and only mildly disorienting, in fact it actually felt rather good to have the mental space back. I have a theory that the information is still preserved redundantly even in damaged sections of the brain, however the pathways or triggers are damaged. The best analogy I can come up with is when the partition table of a computer’s hard drive is erased, the memory is still there but the file directory is gone, once it is restored, a check disk verifies the information against the directory. I can’t find any sort of literature for this phenomenon, and would like to know if anyone has additional evidence on this, anecdotal or otherwise.

    • Hi Gregory,

      I definitely have had “chunks” turn on but not quite a resequencing like you have described. (Which sounds sort of cool!) For me it has felt like a missing section in a neural pathway gets reconnected /rebuilt and suddenly the capability or thinking is happening again. Sort of like a blown circuit breaker getting switched back on.

      However, as I have healed, I went through this time period where I had what I call face-morphing. It would happen most often just before sleep. Like you describe above, it felt as if I were watching frames of a movie but what it was doing was causing a face to morph into a different face, then another, and another, etc. face, after face. The faces were not all human! When it first started happening it was a little scary, but then it actually started having a relaxing effect. I feel whatever it was, it was part of the healing or remapping.

  • Josh

    Good day (I hope),
    I’ve been struggling with a MBI for 2 and a half years now due to a careless driver making a U-turn through my motorcycle. Many of the things you have posted ring true for me. Slow processing speed, fatigue, both mental and physical, headaches and dizziness are killer. Anxiety, depression and uncontrollable anger are also tough at times (I am not an angry guy).

    I find that ‘chaos’ is a huge problem. Kids playing, multiple conversations around me etc, set off my symptoms. Problem solving is tough, sort of similar to the dots, when I start thinking about a problem, I can’t keep the different aspects in my head. When the 3rd factor comes in, the first 2 are gone.

    Over the past 2 and a half years I’ve gone through about a million tests, you name it, I’ve done it. My first IQ test put me in the 99th percentile, even with a 50% processing speed.

    As I’m going through litigation, one of the issues that I’m having is that it seems that no tests are designed for high IQ people and I’m killing them all, which is making it difficult to show a deficit. My MRI’s show nothing.

    Has anyone else dealt with this? Are there specific specialists that might better help isolate some of my issues? Any tests? Scans or imaging that you know of?

    I’ve gone through a cycle of HBOT, 20 sessions, which were as close as I felt to being past this but a setback brought everything back (way overexerted at a Neuropsych assessment). I started HBOT again 4 days ago and my energy is already up a little. I found that it was the only thing that has made any difference for me. It’s pricy, but I got to a point (again) of ‘I can’t live like this anymore’ so I’m back in the tube.

    Until seeing this post, I didn’t consider that a ‘high IQ’ MBI would be different from a standard MBI. Is there any more literature on this?

    Thanks all,

    Toronto, Canada

    • Josh, that’s a good question on whether there is research literature on the High IQ MTBI. When I wrote that post it was something I had discovered on my own in struggling to understand my own TBI. Though I have subsequently read reams of research, I have never searched for exactly that.

      The best place to look would be to visit the library associated with the health sciences / medical school in Toronto. I assume that would be at the University of Toronto. Talk to one of the librarians to get help on how that library’s literature search works. There are quite a few journals having to do with neuropsychology – which is where I would expect to see articles about that.

      Have you read Norman Doidge’s books? Besides the fact that they are excellent, Doidge is also located in Toronto. Looking at his website it looks like he must be deluged with requests, but I would still suggest seeing if you can find out who are people he recommends in the Toronto area.

      I am happy to hear that HBOT is working for you. (FYI readers, HBOT is Hyperbaric Oxygen Therapy.) I have not known many people who have tried it. One more thing that I have a feeling may help you a lot is to see if you can start working with Mindfulness – meaning some kind of meditation or deep relaxation. I have found that incredibly helpful.

      Two other things to get checked if you have not already done so. First is to see a good TBI rehab clinic/doc to get thoroughly tested in regards to the dizziness and headaches. In my case it turned out that my left eye now moves slower than my right. Once I got help with retraining my brain to properly interpret the altered input the dizziness completely abated and the headaches about halved. The other huge thing for me (not saying this is true for you) was getting diagnosed with sleep apnea. If there is any chance that could be an issue for you – either due to the brain injury or predating the TBI – get tested!! Your brain needs oxygen while sleeping to heal. Starting to use a CPAP was really caused my recovery to take off.

      Regarding your court case, make sure your lawyers get a phenomenal expert witness; someone who really knows MTBI and hopefully high IQ as well. A phenomenal expert witness will be able to address the fact that though you may “appear” fine you are no where near back to your normal self.

      Lastly, hang in there. It WILL get much, much, much better! Two and a half years feels like forever, but it is actually a very short time in terms of your brain healing. Research is showing that in many cases the brain is actually in an acute injury state for a year. During the acute phase the body and brain are “dealing with” the trauma; not actually starting the healing and remapping. And brains heal and remap slowly.

    • Gregory Norris

      Hello Josh, I have only found a few peer-reviewed publications on “High Functioning Patients with mTBI” (try using this search term), however the consensus is that the impairment tends to be more noticed by high functioning patients, perhaps because high functioning people tend to push their own boundaries more often, and notice when those boundaries change. I have also experienced many of the symptoms you described. My biggest challenge currently is functioning around multiple stimuli. Large parties, multiple people speaking and the grocery store all seem to overwhelm me, requiring removal from the situation or suffering of a mental breakdown of various types.

      As for medical imaging, a functional MRI (fMRI) can show if parts of your brain are working harder than usual to pick up the slack, which is evidence (not proof) of a brain injury.

      A diffusion-tensor MRI (dtMRI) can show if there is abnormal axional connections in the brain which are indicators of axional shearing, a common cause of mTBI symptoms. Studies have shown evidence of damage at one year after an mTBI w/o loss of consciousness, however I do not know of any studies exceeding the one year mark. Of all the imaging techniques, this is the most likely to show that damage occurred given the time since the injury. Even though this can be performed on a normal MRI without modification (assuming >1T field strength, and 8 head coils standard in neurological imaging), few facilities offer this type of scan.

      A SPECT scan is also a cheap way to determine brain functioning, however it is not as accurate as fMRI, and uses radiological components so your doctor won’t order one if you’ve had any radiation exposure (multiple CT scans) in the past year.

      Personally I’d go the MRI route, or inquire if the DICOM imaging data from your initial MRI can be reprocessed using different techniques.

  • @Tracy and @disqus_tQOFDUXgG5:disqus, thank you so much for your comments. Gregory, I appreciate you taking the time to write all that you did. Your experience of chunks of yourself “turning back on” is similar to what I experienced as I healed.

    The big warning that I will give about Nootropics is two fold. First, there are good ones out there and also a lot of snake oil. Be careful. Second make sure it is not going to have an adverse effect when mixed with other medications or supplements.

  • Gregory Norris

    After over a year of searching inline to come to terms with mTBI, this webpage finally shines light on everything I have experienced. I had seen only one other article which suggested that mTBI is worst for high functioning patients, and why shouldn’t it be? I’d always taken gambles in life, gambles in intelligence that I knew I would always come out ahead on. It didn’t matter what I did because I developed a view of life so abstract and purpose-driven that I thought I could not fail. This changed after a careless driver rear ended me on the highway. The metaphor of the balls of thoughts floating around had me in tears because this is my mind. There is no more organization, my thoughts are like watching a movie where every single frame has been replaced by another movie. Objects, feelings, abstractions all flicker in my mind at 30 frames a second. After neuropsych testing, I was “untestably high” in verbal, well above average in all others except cognitive processing speed. Not accepting what happened, the best course was researching everything about neuropsychology. Piracetam and other Nootropics made the biggest impact, as did getting back to work 5 months later. Took the noots only for a few months until I saw diminishing returns but they brought me from 20% to 80% of what I used to be within days, I could write a medially accurate journal on recovering from TBI at this point, enough research to not burn myself, but nothing to lose if I did, I made myself the perfect test subject, with modest gains. (If you read this do your research first, nootropics are not a miracle cure and require INTENSE research on neurology to avoid making a TBI worse.)
    No one can imagine the joy I experienced when a “chunk” of myself turned back on at random times. The recovery was anything but steady. It was rather a series of instantaneous “on” moments. I imagine that the neuron clusters are intact, but the communication routes were damaged. One the connection was re-established it was like turning on a lightbulb, a large piece of my soul coming back to me in an instant, the cramped claustrophobic cage of my mind opening up just a little bit. This happened maybe twenty times before during and after taking the noots for repairing the damage.
    The first two consecutive days I had without a complete mental meltdown I started looking for work, which lasted almost a year before they fired me for cognitive disruptions they can’t even begin to imagine, assuming this all consuming struggle to stay afloat was mere inattention or laziness.
    To go from the heights of live broadcast controller or network administrator and student all the way to low stress jobs like ski rental associate or level 1 tech support has been the hardest part, being ripped out of my long-term education and knowing that I can never go back, or balance work and school like I used to. That is the hardest part, knowing it’s all there, but that I never had to learn to use my brain the hard way, all my shortcuts, cheats, talents stripped away, mentally having to learn a manual transmission after driving automatic for the past 25 years. Not that it’s been all bad, being a genius was also a hard and painful path, but at least I could attribute that to my own masochism than to a cruel turn of fate. As for what I’m doing next? Anything I can until I feel confident that the oxidative stress from university studies will not damage my brain farther. The point is to be aware of what is going on, try to fix it and then live with whatever can’t be fixed and keep moving forward. I really can’t stress this enough, the need to take some time to rest initially, but then push yourself painfully back into working order. Reprogramming your brain takes a lot of work, it’s tiring, it’s confusing, it hurts a lot but it’s the only way to start recovering and well worth the effort.

  • Tracey Landmann

    I am so delighted to have discovered this post! Well, discovered it or my personal benefit, that is. It’s sometimes quite overwhelming to live around the other people to whom you are accustomed, and have them do amazing things, while you struggle to achieve miniscule portions of their own achievements, or put so much more energy and time into your creative gifts than do your peers. Of all the setbacks a severe TBI deals, in my case, that’s one of the most frustrating. Thank goodness for the development potential that remained in so many of my abilities, but curses to the injury that doesn’t allow me to organize then effectively! I am, once again, greatly comforted to read I am no alone.

  • Wow! Sorry to hear that, but as you know, the surgery is usually very successful. I have a very bright friend who never had the surgery since back then not much was done about it. He just has an oddly shaped head.

  • Rose Kaye

    Hi! I have custody of my 8 year old grandson who had a stroke either at birth or in vitro. I cannot get a doctor to really deal with this as he does not LOOK like anything is wrong. He cannot read but it’s amazing at art. Can you recommend any one in the NEC Florida area who specializes in this type of thing? I feel he gets little help because he is on Medicaid but I can not put him on my insurance. Thank you so much for this site. I also have a high IQ, fell in 2012 and was out for a minute or so, had 2 staples put in and I have never felt the same. Everything is overwhelming! Since then I have had several hemapelegic (?) migraines, which I had never experienced, as well as a feeling of constriction on my brain 24/7. As others have mentioned, the docs have told me it’s anxiety, hypochondria, depression, etc. I hate to take drugs but all the positive comments about Adderal interest me.

  • sha

    Hi 2010 fell down stairs ? tbi. Hospital hospital now two sons and I have to live with my parents ? I starting masters this yr. Have always been extremely intelligent. Loves this post

  • Chris

    I don’t even know if this thread is still running but I had brain surgery back in 91 back then they didn’t know very much about brain surgery so everything that I described afterwards they chocked up 20 it’s this it’s Mears it’s that you have migraines everything was something different than what it actually was. I had been describing to the doctors since I originally had the brain surgery that from the moment I woke up it seemed like I was in a fog that I knew where everything was but it all been moved around and I just couldn’t find my math abilities which I had always been able to do in my head I could not add or subtract the VA assigned a payee to pay my bills for me. I was suddenly unable to read although I could still write and type people could not understand the fact that I couldn’t read what I had just written or
    typed and most people believed that I was lying, or that I was just too lazy to put in the effort to look at the words recently I’ve been told that it’s called secondary dyslexia. I finally got a doctor that did a little research on TBI’s he is not a brain doctor in anyway he’s just a psychiatrist! After getting me earlier as I handed down patient he left me on all the drugs that I had been on I was taking upwards of 38 pills a day for all kinds of things that I didn’t actually have I just had the symptoms of, It’s kind of miraculous that for 23 years nobody could figure out that my acquired brain injury you were Trumatic brain injury was some kind of syndrome that a lot of people with brain injuries describe the same things but here in Kansas there is no brain injury center for people to go to anywhere near where I am. Recently I went through a bit of a crazy phase I decided that the medicines hadn’t been working for me for 23 years why keep taking them so I stop taking everything except for my pain meds and my panic attack meds although in my pain meds I did cut out 150 pills a month. My doctor not being upset with me at all suggested after we both did a lot of research that I try Adderall, I have never been one to drink or do drugs I am so scared or have been so scared over the years that the drugs or alcohol would react poorly with the problems that I already had that I just never touch them so I wasn’t very sure if I wanted to try it? After a little bit I thought we decided to give it a try the first day that I took the first pill it was about 15 minutes after I took it my whole world changed in a matter of nano seconds I was smart Again not that I could do the math or read as well as I could in the past not that I could remember everything that I had wanted to remember but the fog that I lived in was gone I could suddenly see where everything was again I was so happy I cried! The reason it’s taking me so long to even look into dramatic brain injury centers up to this point is as I said before in 91 there was very limited information on it so the information that I was given I stuck with for the last 23 years nobody ever looked it up and I never thought to have somebody look it up I obviously couldn’t do it myself and it’s only been the last month That I’ve been on the Adderall, I am now down to four pills a day that’s all I have to take instead of 38 I know a lot of people say the taking pain medication and an amphetamine and a Valium and trazodone is a her Renda’s thing to do, But in my book it’s just not that bad I am down 150 pain pills a month I am down 34 pills a day I’m not with Sergeant anymore I don’t pray to just die I don’t hate myself I can finally see that there is a tomorrow and in that tomorrow there’s a place for me that something that I haven’t seen in a very long time if anybody has any comments or ideas on things that can help me get back into life because I have no life skills right now and we don’t have any psychotherapists around here please let me know I would be thrilled to hear of anything I can do to improve my situation.
    Thank you Chris
    I might also add that my brain injury was sustained while I was in Desert Storm and I contracted a tumor on my third ventricle while in country after that I was air backed out and they did the brain surgery to remove it.

    • Hi Chris. Yes, this thread is still active.

      Where are you in Kansas? Where is the nearest VA hospital? Do you know?

      The reason I am wondering is that the VA has some kind of program of training medical providers for TBI & ABI care over the internet in areas that are underserved for veterans. I do not know a whole lot about the program, but if you can tell me where you are, I can see if I can help you find some good care.

      Getting off all those drugs is great!! Now, with the help of Adderall, you can start working on remapping your brain. It will be slow, but steady process.

      It would likely be helpful for you to get some rehab help to teach you some compensatory tools. Using tools like notes, timers, planners helps the brain remap.

      The VA is often a good place to get help like that. Plus, though there may not be a brain injury specialist in your area there may be someone who works in rehab for stroke patients. Someone like that would be able to help you improve.

      Wishing you all the best with your continued improvements!

    • Gregory Norris

      Stimulant medication (amphetamines) is actually a very good thing to go on after a brain injury (after the initial rest period to minimize oxidative stress). There are also medications which help to repair brain damage by promoting neurogenesis, although depending on the case neurogenesis can work for or against you (new neurons require training, and can add to the “fuzz”.)

      Also there is a semi-conspiracy with the VA to prevent veterans from being diagnosed with TBI of any sort, seeing a private psychiatrist or neurologist may be a good option for a second opinion. I base this opinion on other forums where members had a very difficult time getting diagnosed with TBI by the VA, but were independently diagnosed after private neuropsych testing.

  • Rich

    This is fascinating for me. Back in 2008 I was in Iraq and apparently picked up an infection. The short version of it is Chronic Meningitis and a Chronic Encephalitis….that was not a fun 8 months. Docs did multiple Lumbar Punctures but were never able to identify the pathogen but knew there were issues as my cerebral spinal fluid had a high white cell count and MRI showed lesions all over my brain. I was in mid stride of a PhD at the time (doing research in Iraq) and when the infection was taking place I couldn’t ad 4 +4 or tell you who the president was. Anyway, they came to the conclusion that it was probably one of thousands of insect born viruses that they postulate but have no test for. Long term effects…mood swings, depression, shaking, paranoia (worse than it was), very unsocial….nothing I cant live with. But I swear my IQ has gone up. I was once tested in school and was in the low 120s. After the brain infection I am well over 130 (just passed the Mensa Test). I forced myself to complete the PhD, have written a book, work as a professor and find it almost effortless to string together disparate concepts, theories and ideas that quite frankly even shocks me. I simply cannot envision me doing what I do now before the brain infection. While I know the healing took years as I fought (struggled) with the PhD, now its almost hard to talk with peers because they can’t keep up mentally. Has anyone had a similar experience from a long term infection rather than sudden kinetic trauma?

    • That is interesting Rich. I have wondered about that possibility even with Traumatic Brain Injury. Since we are remapping our brain as we heal it seems like we could increase our IQ. Brains respond to the fuel you give it. Your struggling through your PhD program as you were healing is the right kind of food for increasing your IQ.

      I am reading a good book right now that you might be interested in: The Upward Spiral: Using Neuroscience to Reverse the Course of Depression, One Small Change at a Time. I think it might help you with some of the long-term effects you describe above. The book is quite good and also quite funny. And it talks about a lot more than just depression. For example, it addresses anxiety, mood swings, etc.

  • GeorgesDragon

    I am so thankful that you wrote this article. For the past two years after a major car accident, because I still test in the “superior range”, I’ve been told “it’s all in your head”, “TBI/PCS only lasts a few months, you must just have clinical depression/hypochondria/anxiety/psychopathy”, ”what you’re experiencing isn’t typical of TBI”. I used to be a Literature/Classical Studies dual major with honors, yet until a few months ago reading anything caused me to feel overwhelmed and dizzy – to the point where I would start crying. I was unable to remember anything I’d read, and would continuously reread. Sensory overload was extreme, as a result I was constantly agitated without knowing why, panicky, and it felt like my mind was racing at a thousand miles per hour without my being able to control it. I was constantly exhausted, to the point where trying anything new or even watching movies left me too drained to do much else. I was depressed, suicidal, anxious…and trying to cope with all of it using the psychological coping mechanisms my psychologist prescribed for clinical depression and anxiety. It was like trying to dig a well with a brick. Eventually, I just started thinking “maybe I just wasn’t THAT smart before” / “maybe I’ve always been like this” / “I guess I’m just crazy”. Until finally, this summer I went to a neuro-ophthalmologist and was diagnosed with Post Traumatic Vision Syndrome, and prescribed special lenses with prisms in them. I feel like myself for the first time in years, I feel like myself more and more everyday. The psychological IME my insurance company had me undergo prior to that diagnosis obviously still asserts the old lines of “hypochondria”, “clinical depression”, “non-typical of TBI”, your article gives me faith that I’m not alone in this atypical presentation.

    • Problem is, your presentation is NOT atypical! Your symptoms are pretty classic as is the comments made by the medical practitioners you saw. My bet is you were seeing a family doctor or/and neurologist; not a physiatrist who specializes in TBI. The latter seem to be the only ones who truly “get” what goes on with a brain injury. Most neurologists don’t!! They seem to be better at diseases like MS or neuropathy.

      Very cool about the prisms helping so much. I had not heard of that one. My left eye tracks slower than my right due to the brian injury. I was given a bunch of very effective (and very uncomfortable) exercises to train my brain to process the new and varied input speeds. Made a world of difference!!

      Healing/Recovery/Remapping from a brain injury takes years. You will keep improving.

      I hope you are continuing with your studies at a pace that is working for you. Be sure to give your brain time to recover and cement the learning by taking naps, getting a full nights sleep, getting physical exercise (which pumps more blood to the brain), eating well. Mediation and Tai Chi are also very helpful.

  • pskocik

    Hi. I can relate to this. I had scaffolding collapse on me and hit me in the forehead in July 2014. I’ve been living with consequences of that, particularly in the form of headache and depression, ever since. I’ve always been very intellectual, competing in math, physics, and such. The concussion took a chunk of me, and recovering from it has been a struggle, and as has staying on my current path, which is computer science and software development. I was curious if there were any other people with similar aspirations who want to stay on their path in spite of the challenges that an mtbi brings. Hit me up, I’m pskocik on StackOverflow and Twitter. I hope everyone has a great day, and many thanks to Emerson Jane Brown for setting this site up.

    • Rick

      Yes I am in the it field program as well and I’m continuing to grow my skill-set and relation computer science. It was nearly impossible the first year after my injury but now three years out I’m actually quite competent you’ll have to learn to think differently but your brain will adapt and over time it should compensate very well it is just a slower process but once you compensate you’ll actually be able to learn at a similar rate to pre-injury sometimes it sounds like it’ll never happen but it does get back to high functioning level just maybe not quite what you’re used to you may actually have better output and be more efficient because you’re forcing your brain to think of a more efficient manner why you have less horsepower so to speak but then as you recover more horsepower is now being used in a more efficient manner so even if the end you’re running at 90% all of your previous work it’s going to be much more efficient use of that 90% or whatever your recovery is enough so that your output is actually better than it was pre injury. I’ve been through it man like from incapacitated for two years, in bed for 18 months to programming 16 hours a day. Currently. You’ll get there. Eat a brain Health diet,a lot of Omega threes stay hydrated, see TBI specialists and do a lot of low-level cardio as long as your doctor says it’s ok as It will help to promote neurogenesis. Best of luck man

      • pskocik

        Thanks for posting. Sometimes I feel like I’m just a lone, depressed, mildly braindamaged college dropout working against a herd of PhD computer science brainiacs, and I guess I am all that, but at least it’s nice to see there’s at least someone who’s gone through the suckiness of a brain injury and are still trying their luck at computer programming, although I’m very sorry for what has happened to you.

        • Rick

          I appreciate the kind words. I understand how very extremely dark and depressing it can be it’s not a broken leg it’s not the flu it’s a change of Who We Are in the truest sense of the phrase. But it’s not permanent and that is the most important thing to take away and sometimes that doesn’t seem possible especially in the beginning and middle. You have to remember that you will recover neuroplasticity is no longer a theory and you can take part in Proactiv daily action both physically and nutritionally that will overtime enable you to recover and get back to your initial levels. It’s a time-consuming process but you really can make a quantitative difference by being consistent and vigilant.

          Another thing that you should remember is that we live in the most amazing time in human history technological and medical breakthroughs are happening in all sizes at an unprecedented rate exponentially faster in fact than ever before.

          We are beginning to understand biology and the human mind in ways that have never been understood before and now that medical health is becoming a data science we are able to take advantage of massive computational power and models.

          There are going to be treatments available in the future for us, not so distant future I might add that will allow us to completely recover and in fact exceed our prior cognitive function the technology exists in lab form and have been tested successfully on worms mice and dogs and are just now starting human trials.

          So I think it’s a blessing in disguise because you now have the opportunity to train your mind to be much more efficient than it ever was
          And I’m sure you have a much more deep appreciation for the intellectual gifts you possess. That should give you confidence knowing the advantage you have on the field.

          And once you recover fully through a combination of nutrition and physical Therapies. You will be much more efficient than you probably ever would have been.

          I know it sucks it can be depressing disheartening infuriating make you want to put a hole in the wall(I’ve done this lol) and literally crush the soul of a man. The sense that you’re not yourself that you’re someone else that sense that you perhaps lost something permanently. Not just an item but a piece of Who You Are just as important as a limb.

          But it isn’t gone permanently they told me I would be this way forever and nothing would change. that I couldn’t work out and that I would have these reading, cognitive, vision and balance issues forever.

          I went from being incapacitated to forming my own company. I code all day long, have learned multiple new programming languages and bike 24 miles a day.

          This all from a guy that couldn’t walk across the room without bumping into things and almost falling over.

          I tell you this so you understand where you will be in the future just make sure you reduce the number of times the depression of it prevents you from doing the actions that will facilitate the full recovery.

          1.Drink your gallon of water a day,everyday regardless of anything.
          2.Eat your brain healthy diet.
          3. Get on a stationary bike if you can 2-3 times a day if medically permitted at this facilitates neurogenesis and general recovery.

          Look at Elon Musk he got his head kicked in as a child spend a week in the hospital and because of that is different cognitively listen to him speak in interviews there is double-talk especially during analysis and yet he is the Thomas Edison meet Henry Ford meet Steve Jobs of our time. From facilitating the Advent of electric cars,self driving vehicles reusable Rockets and more.

          I don’t mean to bore you a long-winded response but I’m just telling you because I’ve been there like the bowels of Despair with this s***.

          I was able to come out of it and you can too I probably would have came out sooner if I took the above-mentioned action sooner so I implore you to set yourself a simple routine of drinking a gallon a day and staying hydrated getting your heart rate up and the blood flow to it 3 times a day eating a healthy diet specifically brain health and following up with additional treatment as recommended by your provider.

          By doing these simple things consistently you can have a massive affect on the rest of your life and the younger we do these things the more lasting and stronger the changes will take place regarding neuroplasticity.

          Good luck to you man. If you ever need need to reach out to vent or ask questions just ping me on the side 609-579-1621.

          Good luck

          • pskocik

            Many thanks for that highly encouraging message. It made me look at some completely differently. Lately, I’ve been just focusing on my software project, and neglecting my physical fitness and everything else. I felt like I just want to get this done, and I don’t care for anything else because things will probably suck forever now anyway. Now I feel like they maybe they won’t. I got back to exercising, and I will continue working on getting back in shape as well as on getting back in business.

            • Rick

              Glad to hear it friend. It really will get better. It also helps that you are young the Younger You Are the more you’ll be able to take advantage of the plasticity of the brain. Have you seen a concussion specialist? not just a neurologist or somebody who makes you sit through the impact test on a computer.

              • pskocik

                I have not. I have lots of learning, rebuilding, and building to do now. I’d rather not focus on that accident or its now very minor after-effects any more.

              • pskocik

                Happy new year, and lots of successes in business and in life!

  • Pamela

    Something happened to me in 2002. I was a medical student, a writer and painter (and so much else). My IQ was in the “very superior” range. Next thing I know I’m confused and stuporous all the time with numerous neurological manifestations, including sudden trouble walking and talking. After I had to drop out of med school, because I was so confused that for example I didn’t know what a chair was for, I was isolated, and being isolated there was nobody to notice how impaired I was (and I was too confused to know to go to a doctor until almost a year later). I kept saying for years (only very gradually getting better and rehabbing myself with thousands of NYT crossword puzzles, etc.) that I must have had a stroke or something to explain my deficits.

    My neuropsych testing in 2002 showed that I had a cognitive disorder. In 2004 I was below average in nearly everything and told basically that not everybody can be a genius. This was at Johns Hopkins. The psychologist/tester didn’t care to explain how I would manage to get into a highly esteemed medical school and everything else with my below average abilities. It took years, at least 7 or 8 to get past pretty major confusion and memory problems. Now I feel sharp again, and my IQ is again in the “very superior” range, but things like sending off a bill are monumental tasks for me. I could not hold a job, and I feel so fortunate I don’t have to. I have MAJOR executive dysfunction, i.e. with planning, motivation, starting, maintaining or finishing anything, and my passion and creativity, the erstwhile hallmarks of my personality are blunted, to say the least (though even this has improved somewhat even in the last few years). The 2013 testing, again at Hopkins, did not reveal major executive dysfunction(!!!). Anybody else’s neuropsych tests not reveal much, despite subjective major problems??? Not only can I no longer write a novel for various reasons, I have trouble with the day-to-day tasks. I was once upon a time so creative that I had to record countless ideas a day for writing or art projects that I always had going on, etc. Even after I turned off the light at night I would scribble pages worth of ideas in a notebook at my bedside.

    In the artificial testing
    environment I am able to concentrate on the limited variables provided (e.g. a
    couple of shapes) when I’m induced to focus in an environment without
    stimulation or choices (i.e. nothing to distract or overwhelm me), when I have
    a single task before me that’s expected to be accomplished at this prescribed
    moment, with essentially nothing impeding peak performance. Furthermore, my
    feeling about the 2013 tests, even as I was taking them, is that many would-be
    deficiencies could be compensated for by a reasonable degree of intelligence,
    i.e. to the extent that someone is intelligent is the extent to which he
    wouldn’t have to concentrate as hard or long to arrive at the correct answer in
    a reasonable amount of time (due to “cognitive reserve”)—from what I understand, these tests are indeed tared
    with “average intelligence.”

    I’ve been diagnosed with four clotting disorders, one of which was basically an imminent stroke risk, but ONLY NOW is any doctor listening to my complaints after all these years, after I demanded an MRI/MRV revealing that I not only had a large venous clot in my brain (causing intracranial hypertension), but an unrelated carotid artery dissection, which frequently cause strokes. They finally believe that I’ve had multiple strokes (one of which was a TIA erroneously written off by the ER as drunkenness, despite an exculpatory ambulance blood alcohol test). Venous strokes, as it turns out, are often missed because they can present sub-acutely, even over weeks.

    My mind is often “blank,” which would be great if I wanted to be a Zen master, but which is nothing like the richness of my mindscape formerly. “Blank” feels terrible to a passionate and creative person. My friends from long ago are nominated for the National Book Award, among other distinctions, and I envy their creativity and their industriousness. Apathy was foreign to me pre-2002, but I’ve seen a lot of improvement with it.

    Anybody else look outwardly normal and people discount your complaints, because you sound too smart to be impaired? Even when I couldn’t have told you when January is relative to December (after “concentrating” on the problem for WEEKS), I apparently seemed smart. The other problem is that I had become very depressed due to my losses, including the loss of not only my faculties, but my dreams, but I kept saying that the depression was secondary to this. I was told that depression caused it, even though I knew that not to be the case. I haven’t had a day of depression in years, and I still have lingering issues. Nobody knows what it’s like to be in our brains. I know how off-putting our complaining about these things is to those who are indeed worse off… it’s definitely all relative. Sorry for the rant. (If I were more organized, I’d start a website for people with high IQs and brain damage.)

  • Sarah

    I sustained an acute subdural haematoma three years ago and, despite thinking I had already read pretty much everything on the net relating to TBIs, I only stumbled on your website this evening. Your article really struck a chord with me. Since my accident I have not felt at all like myself, more specifically it seems everything is more difficult and takes much longer yet I feel that if only I applied myself I could do better. I am still coming to terms with that not actually being the case, I probably am doing my best and it just isn’t good enough anymore. I was told by my psychologist that I was probably just experiencing what it was like to be normal. Prior to my injury, I found everything pretty easy. In my spare time I read avidly and did well in my studies with very little effort and while also working part time. I have often told my friends and family that I feel stupider and not quite myself, yet they assure me I am the same person. I had a neuropsychological testing performed post-injury and my results were disparate, ranging from the top ten percentile of the population to average/borderline and the areas in which there were deficits correlated to the areas in which my brain was injured. I actually cried during the test, as I felt the difficulties I experienced performing the tasks illuminated what was actually wrong with me. I had particular difficulty in completing a task involving copying from memory a simple shape showed to me on a card and repeated this countless times, never able to fully recall what I had seen. Now, 3 years on, I still experience difficulties related to my TBI on a daily basis. I forget everything, things I have known to be true for years, who I am calling, where I just was before arriving at my current point.. I am still studying, and now an essay which would have taken me an evening before can take up a whole week or two while still not being good enough. And the mental fatigue and chronic tiredness are still there, I’m guessing at this point they won’t be going away. I don’t think anyone who hasn’t experienced a TBI can really understand how difficult it is to still be yourself while at the same time missing parts that had always been there before and which you are often unable to pinpoint exactly.

    • I don’t agree with the psychologist who told you that you were probably just experiencing what it was like to be normal!! You are experiencing what it is like to have a brain injury with brain holes!! That psychologist clearly does not know much about brain injuries!

      Regarding the mental fatigue and chronic tiredness . . . I have a couple of ideas.

      First, make sure you are drinking enough water. Hydration is important for everyone, but even more important for us. Having enough fluid coursing through your body is important for brain remapping (neuron growth and health) and for clearance of waste material from the cells. Often the chronic tiredness can be reduced by staying hydrated with water.

      Second, it sounds like you may not be pacing yourself enough. Listening to your body (your brain) and stopping to take a nap when you start feeling fatigued is very important – critically important! You have to allow your brain time to heal and remap. Sleeping is when it does it.

      Think about a baby and how they take two naps a day. If you are around a baby watch how they get when they need to nap. It is very similar to the brain fatigue we experience because their need to nap and ours is essentially for the same reason. The brain needs sleep to build neurons and connections. When you were a baby you were mapping your brain for the first time. Now you are remapping it.

      Sarah, you will get better – a lot better. Three years is really not very long in the terms of how the brain continues to improve. I am over 10 years out and I am still improving. And the cool thing is the rate of improvement seems to speed up as you get further out. But pacing yourself and honoring your body is crucial so start there.

      I recently saw a very good TED talk about the brain by Jeff Iliff HERE. It is worth watching! Also, read the reply to Allie’s comment below. I think you would really like the books I recommend there.

      Wishing you all the best!

  • Allie Ó Muircheartaigh

    Don’t know if you’re still monitoring this post – I noticed the comments are from three years ago – but I happened upon it purely by accident this evening and felt the need to comment. I am a TBI survivor, one of the “gifted,” I suppose, and prior to my injury seven years ago I was on my way to becoming a biotechnology patent lawyer. That came to an abrupt end on a snowy night on a Minnesota freeway. I went in for another neuropsych a few weeks ago, and was expecting great results: I’m out of the group home and living on my own, my attention span and concentration has gotten dramatically better, and I was hoping the doctor would say I was functioning at almost pre-TBI level and I could return to school. Dream crushed. Instead he informed me I tested in the 14th percentile and my I.Q. came out at 84 (a very significant drop)!! I burst into tears. It was exactly what you said: there were holes in my performance. I tested in the 99th percentile in one area, and the 1st percentile in others. It’s a hard knowledge to live with. I also have a blog were I write about living life post-TBI, and I immediately came home and blogged about my shock, frustration, and general dissapointment. It’s hard to have such a huge variance in abilities. Thanks for your post.

    • Hi Allie. Thank you for commenting and yes! I do still monitor this post and reply. I wish there was a way to set the default in the comment section so that it always show the most recent comment instead of the first comment.

      You will continue to improve. Do not get disheartened. Use the neuropsych evaluation as a mile marker on your rehabilitation path.

      The way to continue to improve is to find opportunities where you can safely work on your weak areas. Be willing to begin where you are!! That is very important. It is also very important that the situation helps you be successful in the time that you need.

      For example, I recently started working at a store as a sales clerk. When I interviewed for the position I told the manager that because I have had a brain injury it takes me longer to learn things and asked if the training could be spread over a longer time period. If I had not requested that and told her up front that that was the case I am pretty sure I would have been fired during the probation period. Instead, I was able to learn at my own pace and am doing very well in the job now.

      When I was still quite challenged I started volunteering at a food bank. Having to sort the food as it came off the distribution center truck helped that part of my brain start to work again. Start where you are and just keep working.

      Have you read (or listened to) Norman Doidge’s books? I highly recommend them to everyone with a brain! But especially for everyone recovering from a brain injury.

      His first book is The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science which is very good. But his second book, The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity, is even more directly related to TBI recovery.

      Hope this helps! Best wishes on a steady progression of remapping and recovery.


  • e.e.

    Does anyone know anything about neurological recovery from brain damage inflicted by starvation/malnutrition? I am sixteen years old and am recovering from a restrictive eating disorder (diagnosed as anorexia), which I had for six months. I am wondering if anyone knows if there are differences in possibility of recovery and/or process of recovery (from what I know, the essential causes of damage are the same: death of neurons).

    I’ve been having similar experiences to those described by everyone else – people act like my impairment is no big deal because I “still have a higher-than-average IQ”, even though I lost 21 points. I’m afraid to ask for help with intellectual recovery because I worry that people will tell me that it’s impossible, tell me that I don’t need it, or think I’m just being a hypochondriac.

    • Hello ee. Thank you for commenting.

      First, read The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science by Norman Doidge. It is a fantastic book; very well written and an enjoyable read. It is an audiobook too. (Many brain injury survivors find listening to a book is easier than reading.) Norman Doidge also has a new book out which I have not yet read. The title is right up our alley: The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity.

      The book(s) will allay all of your worries. You will entirely recover and, because you are only sixteen, you will likely recover faster than people who have an injury later in life.

      Since your damage was due to starvation it is extremely important that you are eating a lot of “brain foods”. I know I have a link to some good articles on foods that help the brain healing but cannot find them right now on a quick look. (It is very late my time with a long day tomorrow so I cannot search more right now. I can look more thoroughly this weekend. In fact, you have given me the idea to write a blog post about brain foods.)

      In addition to foods there are some supplements that I take that I think have helped tremendously. I take Jarrow Formulas Citicoline, CDP Choline, 250mg twice a day and Life Extension Neuro-Mag Magnesium L-Threonat. I take 3 of those capsules a day. Both of these supplements should be taken with food.

      Regarding asking for help with recovery – the important thing is to ask the right person/people. If you can find a brain injury physiatrist (a doctor who specializes in rehabilitation) you will be listened to and understood. Short of people who actually deal with brain injury rehab you may very well get the “still have a higher-than-average IQ” answer (and they probably do not have as high of IQ either!!)

      If by any chance you are in the Seattle area or within a reasonable drive to Seattle, I can direct you to the right people plus I have a couple of other suggestions too that are here in Seattle.

      • e.e.

        First of all, thank you so much for your reply and especially for providing so many valuable resources. I live in Portland, so I would appreciate it if you would suggest people in Seattle (and in Portland if you know anyone here).

        What keeps me skeptical is this article and the studies it cites: If other AN/BN patients do not recover cognitively after 18 years, is it possible for me to recover?

        • e.e.,
          First, it looks to me like Emily Shea, the author of the Psychology Today article, cherry-picked research that supported her angle.

          Plus, reading her article, I am not sure that she actually read the original research. It looks more like she just took the synopses and went from that. (By reading the original research you are in a better place to evaluate how the study was done and really see the results. There are often details in the actual research paper that make a big difference in how the results should be viewed that the “brief conclusion” – which is often written by the magazine editor; not the authors – leaves out.)

          Here is another study done by the same people that comes to the opposite conclusion about the recovery:

          In a longitudinal study, the authors explore the course of general cognition in anorexia nervosa (AN) over time and compare general cognitive problems, executive function deficits, attentional problems and visuomotor dysfunctions across AN individuals and healthy controls. A community-based sample of adolescent onset AN cases (n = 40–47) was contrasted with an age-, sex- and school matched comparison group (n = 47–51) on the Wechsler Adult Intelligence Scale-Revised, the Wisconsin Card Sorting Test and Luria word recall test at a mean age of 24 years. Only two of the cases tested were underweight at the time of the study. The Wechsler scale had also been administered when the groups had a mean age of 21 years. There were few differences across the two groups even though the comparison group performed significantly better on the Object Assembly subtest of the WAIS-R. IQ increased slightly but significantly over time in both groups. There was no relationship between level of starvation and poor results on tests in the AN group. A subgroup of the subjects had autism spectrum disorders. In this subgroup there were cases with test profiles similar to those observed in autism and Asperger syndrome, just as there had been on testing three years previously. Ten years after AN onset, the former AN cases showed no major neuropsychological deficits. A subgroup with autistic features had test profiles similar to those observed in autism spectrum disorders. The AN group as a whole showed poor results on the object assembly subtest indicating weak central coherence with a tendency to focus on details at the expense of configural information. This cognitive style may account for their obsession with details, with implications for psychoeducational approaches in treatment programs/interventions.

          That said, both the last line of the above synopsis and some of the points in Emily’s article do bring up the issue of how the brain “thinks” in relation to body image. If you are having difficulty with that – like perceiving yourself as fat when you are really extremely underweight – it is likely that some part of your brain is misfiring and creating that sort of thinking. However, you can have AN without that happening too. (I had AN when I was just about your age and I did not have the body image thinking. Other things were going on.)

          There is quite a bit of research on AN and the body image issue. The way to find original research is to go to the Oregon Health Science Library. It is in Portland. I know to use the one up here in Seattle I have to be on campus to view the complete articles, but the one in Portland may have online access.

          In terms of recommendations of people in Portland, I will send you a private email – but likely not until Monday. Busy weekend!

        • carrie

          Also, do not believe that study. There are many eating disorders which are not psychological in origin. That is why they have such a low rate of recovery. There are genetics and possible cognitive disturbances which may have preceded and caused the onset. We are exposed to tons of chemicals which trigger genes and THEN we are told it’s merely psychological. I do have a gene issue which caused “feeding troubles” as a youngster and they tried to say it was mental. Caused so much delay in care. My point is you would have to have had assessments of ALL ed patients from before and after. They don’t do that. That said, you CAN keep working on your brain. You are thinking about it, and that is more than most people do. Your brain is looking for ways to get better. You are already making progress. Don’t give up, friend! You have a good brain that sees things right now and wants to heal. 🙂

  • Jack

    Thank you for this. I am 25 and I had a very high IQ but never applied myself and always coasted by in school. 2 years ago I had a hypoxic brain injury after being overdosed on Dilaudid in the hospital when I went in for horrible stomach pain. I aspirated and they say I was without oxygen for at least an hour and told both my parents I was going to die. I was in a coma for 4 days and when I came out of the coma the doctors said it was the most miraculous recovery they have seen in their 30+ years of working in the ICU. After the event I have had to deal with major PTSD due to feeling like I was drowning for what felt like the entire 4 days. I kept wondering why my parents wouldn’t help me. Needless to say it was probably the worst thing a human can experience. I have a compulsion to not leave my house (agoraphobia). After I woke up from the coma my sister, who is a speech therapist, gave me a puzzle to do made for 5 yr olds and I couldn’t even do it and gave up. Some deficits I have noticed include much lower motivation, PTSD, greatly reduced ability to cope with stress, depression, fatigue, anxiety, blunted affect, I am much worse in social situations, much reduced short-term memory, and emotional numbness. The good news is I have learned to compensate on my own by using calenders in my phone, reminders on my doors, getting ketamine infusions for my depression (I have had depression since 7th grade and nothing has helped. The TBI made it even worse and harder to remain functional through), and I am now prescribed adderall for fatigue and motivation and I find it helps a ton. It took almost 2 years for me to get to the point where I can say I am still much better than the average person and am doing well being able to function in normal society. I never applied myself before and still did well in school but the TBI has made me work harder and it is paying off. Now I have the highest grades in all of my classes. I have not gotten below a 100 in any class as a neuroscience major and I’m going to medical school in a year. The loss of IQ is apparent to me and I am sure it is apparent to whoever else has a TBI that is reading this. But you can still achieve a lot and it does get better over time. I would recommend trying adderall because it was a godsend for me. Remain positive and never give up. TBI can be extremely hard to deal with but there is always something positive that can come from suffering.

    • Jack, thank you so much for your comment. That is so cool how well you are doing!

      I call these sorts of things the “Silver Linings” of a TBI (or ABI in your case). I value many things that I have had to develop due to the TBI. I was always a hard worker but now I am also a methodical worker due to how I had to go about things after the TBI. I think I am now far more effective and efficient.

      You are going to be a great neuroscientist and doctor with your intimate understanding of ABI.

  • Thank you for this insightful article about giftedness and how a traumatic brain injury changes it. This gives me insight into the changes that a traumatic brain injury can bring about, and I certainly want to extend more understanding and compassion, should I meet a TBI sufferer in the future. Thank you for such a comprehensive piece, and here’s to your continued healing! 🙂

    • Thanks Amy. The interesting thing is that there are TBI sufferers all around you but you don’t “see” them because the injury is not visible.

      The next time you see someone having difficulty following the instructions at a TSA check point, or having difficulty finding their boarding pass, or looking lost or overwhelmed in the grocery store, or covering their ears when an emergency vehicle goes by with sirens blaring, or a friend spaces out an appointment . . . take a closer look and ask if they have had a head trauma.

      A head trauma can be as simple as hitting your head hard on a shelf. Yes you have done that many times. But often one hit can be the final straw for the brain. Or maybe it is just the angle of the hit that caused noticeable effects this last time. Or you were in a car that made a sudden stop that you did not see coming and your head was jerked hard.

      People don’t realize these things can actually cause a brain injury enough to effect function. They start not being able to remember things, or stay on task. They start having difficulty with bright lights and noise. It is why brain injuries are called the “Silent Epidemic”.

      Sadly, we are still a long way from people being diagnosed correctly and receiving the help they need.

      But every person like you who takes the time to read about brain injuries and gain understanding is one more person who is helping to turn the tide. Thank you for taking the time to read this post and for commenting!

  • asher2789

    This post was life changing. Thank you.

  • nbo

    This is so depressing. I wish I had taken an IQ test before this deterioritation started. They made me take one against my wishes by lying to me and saying that what I was dealing with at that moment was not an IQ test (upon my question) and now they are telling me I had taken one and got 119. (i reasearched it later and found out that it was WAIS)

    This is like a blow to my existence. I came to this clinic saying I have lost the better half of my intellectual capabilitie and they still made me take it. I lost so many of my normal, daily functions ie, being disrupted by a blank state in the middle of a calculation or sentence, saying things like “cook dinnering” instead of “cooking dinner”, rereading a sentence many times to actually see/comprehend it or listening something many times until I actually hear it (uncontrollably wandering mind) and in this same state, when asked a question, responding with not the related answer though meaning to but blurting out what I had on a totally different note in mind all the while instead (example: my brother is asking me if I’d be home tonight and I tell him “yes I’d listen to so and so song” (I’m trying to say “yes I will be at home” but my mind is thinking on the side that I want to listen to say a song called “abeyance” and what comes out is this sentence. Due to the same reason I can say stupid things out loud like “the table’s cat” (what I want to communicate -“the table’s leg” – is different than what occupies my silent thoughts- namely my cat at that moment)

    I am not even normal. It is as clear as day to me. It’s been clear for years and I’ve had enough trouble bringing my family to actually acknowledge it rather then tell me once again that I’m acting out or just exaggerating it. Having lead my life being a person exactly the way you portrayed in that huge list of attributes and behavior, I have also suffered the lack of conviction of others in what I’ve generally had to say or their inability to acknowledge my successes just as well as they want to acknowledge and callout on my failures.

    So the last thing I needed was to tag myself like that. I had been wanting to take this test and been postponing it because I knew I wasn’t normal and something had actually happened to me so I made this clear and they still administered it. Since this woman said she was only trying to see the shape my short term memory was in (because I told them I forgot things a lot, like to the point of an obvious sickness) I actually believed her until the performance part started.

    I first said “this started feeling a lot like an IQ test and I don’t like it” to which she responded with nothing and then when my performance anxiety kicked in, too, I started crying. (asking her to repeat her questions, looking at a picture but not seeing it because I’m just too worried thinking how it is an IQ test and how I screwed up not caring about it until I realized it was one and then how anxious I got and how unethical this all is and how they didn’t have any right to do this but did it anyway)

    She actually made me finish it. I know why this happened. The doc, the head of the clinic I mean, wants to record this as yet another incident where the patient(lol the client) walked in with a low iq and out with a high: his majesty’s scientific hocus pocus is why, not because this person had it in the first place! He wants to make qeeg scientifically respected in more areas than it already is and render it commercially desirable and he wants his name glorified.

    So he (or his gophers) administers you the test when he knows you’re going to suck the worst so that he can present you like his wonder case later on. Y

    It is obvious that this brain injury he says is noticeable in my qeeg analysis, coupled with the little bit of perfectionism and a lot of obsession I have to which he also adds narcissm based on my MMPI results(and on the fact that he thinks my crying about what they did showed how vain I was- he said how I had high expectations of myself and all where in fact what happened was he made me cry by letting me know that my deepest fear has come true and a WAIS score feels more serious and permanent than a repressed fear) and the bad shape I was in on that specific day both mentally and physically… made me get the lowest possible score I ever could. It doesn’t represent my mean performance even in the presence of anxiety (I have always been an underachiever: I score high when it’s for practice and lower when it’s actually happening and I am being assessed)

    All I’m trying to say is there is no way this score has anything to do with me but because of scholarly appreciation and attention this man has been getting his unethical conduct passes unnoticed [I took all the time in the world answering his psychologist’s questions(i called this lying woman his gopher earlier) – looking at the ceiling and yawning because it took kind of long, bored the hell out of me and I had little sleep that day so I was yawning all over the place and above all she said it was just a “memory practice”].

    Don’t let your doctors do this to you, guys. It’s already depressing to think how high your IQ must have been when in your worst state(all these conditions I have described here) the lowest you can get is considered higher than the normal level of IQ(gets more depressing when he says your results turned out just fine when you feel nothing like your old self). I’ve had bouts of suicidal thoughts every now and then for at least 15 years and I have managed to repress it to a great extent but my recent experience caused me to revert back to my older thoughts and wishes.

    Being stupider than you once were is one thing, being aware of it all the time is another and just as stated very precisely on this page, the latter is one tough hell to go through. Personally, I don’t even know if I could survive the thought.
    This is rather like what’s left of me is a stranger to whom I’ve always been, it pains me beyond description.

    Don’t let them make you tag yourself. Don’t ever think what’s happened is permanent. There is a chance to condition oneself to build new synaptic pathways. It’s going to be frustrating, you have to lead a life that is healthy to the point of boredom: sleep well and in time, no alcohol, never skip the first to meals, always have your vitamin b’s and coenzyme q-tens and fish oil and maybe caseine supplements and stuff, always do mentally challenging work and yes never take a rest. “Fake it until you make it” as Amy Cuddy says (I used to be a person with just a high IQ but it appears she was gifted before she had an accident, I mean real gifted, like above 160 or something as far as I can remember, very very sad…) I’ll be trying to make sure I’ll live the rest of my life in this manner. I don’t think I can ever give up and come to terms with my new self. I got to rebuild my brain. Or just give it all up. There’s no middle ground. No.

    • ejb

      @nbo Thank you for writing. Let me see if I can help you out a bit by giving you some perspective from the vantage point of being further along the path of recovery.

      I really get how hard this is!! It is SO DIFFICULT to deal with this sort of stuff when you are in the middle of it and trying to think/feel it through with an injured brain!!

      First, though I understand that you are upset about the test, they are extremely helpful in helping a doctor, or other rehab professionals understand where the injuries are in your brain and how best to help you. ALL of the tests that I know of do measure IQ as part of the test. But it is only one part. The test you were given may be a WOIS but it is likely that the WOIS was only a part of it.

      If you have not yet had a full “neuropsych evaluation” request one. This is an EVALUATION. Think of it as simply a mile post marker on the path of recovery. That is all it is.

      When you take it, just do what you can without worrying about it. It is NOT a test to try and prove anything. It is not a contest. It is a series of tests that EVALUATE certain brain functions. Also, don’t try to guess what is being evaluated. Especially the portions on the computer provide the rehab folks with a broad range of information. Relax and trust that this is to help you.

      Second, as you rebuild your brain your IQ will likely improve a great deal. Mine has. And I know many other TBI survivors who have had the same experience. Your current score is only as a mile marker. Try not to dwell on it. Instead dwell on steadily working on recovery.

      Second, saying the wrong words is NOT a sign of decreased intelligence!! It is a sign that the Broca area in your brain got a little scrambled and is working to recover. Broca’s aphasia is extremely common in traumatic brain injuries. You will get better! Hang in there!! I find I still have trouble with word finding when I am tired but saying the wrong word stuff has mostly gone away. And believe me, I said some very silly and frustrating things. I really get how hard it is!! Here is a heart warming discussion about this problem on Neurotalk. It helps to know that we are not alone!! And it helps to “talk” about it.

      Third, the other thing to know about traumatic brain injuries is that we get flooded by emotion. Emotions rule us. I wrote a blog post about it called I Cry at Commercials

      Basically what is going on is this: In a normal brain the amygdala gets an emotional stimuli which is then analyzed and conditioned by the neocortex. In a brain injury, the processing function of the cortex is far slower so the amygdala essentially hijacks our response/reaction because we are flooded by emotion.

      Again, I know I keep saying this, but it does get better!! Hang in there.

      Hope this helps!

      • nbo

        Thank you so much for the sincere response. I knew about the Broca and Wernicke areas but I never thought any injury to the head I had could have caused this until my doc said so(it started 3 years after and the injury I had was a mild one i fact I thought it was nothing). I should have known better. It was the first time I experienced aphasia so I should have been able to tell but the thing is the people around you… they just don’t believe you’re having a problem that your former self’s not likely to have, that it’s something different.

        Now it all falls into place, this excess emotional response -yes I keep crying at ridiculous stuff too, bouts being triggered very easily- I have been going through… It hasn’t been easy to tell apart from the usual bouts of crying I have had for a long time. I thought I was just losing it. None of my docs filled me in on this although I complained about these problems. It’s thanks to you that now I know these symptoms are so common.

        This page is great. I want to let the people that are close to those who have sustained brain injuries of sorts and varying severity:

        You are not helping when you insist on not believing them and accusing them of self-pity(those times when you think it’s all ok), exaggeration(those times you start thinking what just happened happens to everyone), psychosomatic self-flagellation(when you cannot deny anymore that something’s wrong but you still don’t want to believe it), etc. No. In fact for the worse, when they start believing in you rather than their own trusted gut feelings(“I just know it”), they run the risk of blaming themselves frequently and not tend to their problem in time, when it’s the freshest and most effectively attendable and solvable. This is torture on so many levels. It also damages one’s self confidence when one starts thinking “am I the only one who sees it?” In my case, for instance, when that happened, I wanted to spare myself the feelings of guilt that accompanied the idea of costly medical examinations that not just I but also my family members had to suffer, having to re-prioritize home expenditures and personal spending and all…

        I’m not a native speaker. Sorry for all my mindlessness and mistakes and thank you for having kept this page. This is great feedback and makes so much sense. Best wishes for each and every one of you and your families in what I assume to be a very challenging stage of recovery.

  • M

    Thank you for this! Years of scouring the internet produced nothing until today. I was told I had a brain injury until a psychologist decided to see how I scored on standard IQ testing. When he saw the results, he insisted there was no way I had a brain injury and convinced my neurologist that my symptoms must be stress induced despite undeniable neurological symptoms. Despite other specialists recognizing symptoms, his report has ended my treatment. He insists that I’m “smart enough to fake it.” I know that my brain is different since the accident. My thoughts are different. My personality is different. I feel as though I must do everything in slow motion. I hate it. I am so very bored with my life and can’t pursue my interests. I can’t read! That is devastating. My social awkwardness is a much larger obstacle than it used to be. This is the first glimpse of someone understanding. Thank you!

    • Hi M. How many years out from your accident are you? Is there any possibility of seeing another doctor to get a second opinion – specifically a physiatrist or a neuropsychologist who specailizes in traumatic brain injury? Are you near a place that has a top notch brain rehab department? Do some searching online to see where there is a good rehab place. Even if it is hours away you could still go there for an assessment.

      Or is there any possibility of getting a lawyer involved? I hate to suggest the legal route but often when you have insurance denying claims a lawyer can help you get to the right specialists who can identify the problems and treat you correctly. And they are able to develop and present a case to the insurance to get your care covered. But again, find one who specializes in TBI.

      If you can’t read, you absolutely need to find a way to get to a person who specializes in testing the eyes from a TBI understanding. With me it turned out that my eyes move at different speeds now so my brain was getting confused by the different incoming information. The therapist had me do all sorts of exercises to retrain my brain. They were not pleasant but they worked!!

      For example I had to read something out loud while turning my head from side to side very fast. What I did was found articles that I wanted to read, printed them in 48 pt font so I could see it without my glasses, then taped the pages to my kitchen cabinets. So I would go around the kitchen reading the article out loud. Looked funny and was really hard to do at first, but it worked.

      I am going to start posting a whole series on brain injury recovery. As you can see, I am still having some problems with my website. But I will be back to writing very soon.

  • Sally

    It’s good to know I’m not alone. The most frustrating part is when my family doesn’t have a clue-or want to. That hurts the most and there is nothing to be done about it. There are no support groups for high IQ TBI survivors either, at least not near me so it gets pretty lonely hear insider head. I cope by trying to pretend everything is OK. What else can you do?

    • Sally, try to educate the people close to you instead of pretending everything is OK. Share this post with them. One of the big reasons that I have written this blog is so people will have content to share with family and friends. There is so little written about and, as you say, so little support for people with HIQ TBIs. This post and some others can serve as conversation starters. I hope it helps.

  • Charles Thomas Wild

    Emerson Jane Browne – Have shared this website URL (Dancing Upside Down) at the ADHD Bulletin Board – a Yahoo group. Thank you. Charles Thomas Wild (Inattentive ADHD) –

    • Thank you! And thank you for your kind words in the email you sent. I am always so happy to hear my site is helpful to others.

  • Rupurt

    About 3.5 yrs ago I had a TBI. Before this happened I was a strung out, party kid who made horrible decisions. I feel the TBI actually either increased my intellect or freed the knowledge I had saved up over the years. There are a few subtle differences, but I’m ok with them. My nuerologist is truly blown away by me. I came out of the hospital. Waited one month. Went to college, graduated with a 3.5 GPA in computer programming. I have a pretty decent job, working on certifications. Had to drop out of master’s degree for cybersecurity due to having a little girl(who is highly advanced for her age.)

  • @disqus_id2LT9zT5y:disqus Thank you for your comment. I just started working part time so have not been posting as much. I will get back to it very soon. Comments like yours and the other ones below keep me going!!
    @scrambledsquid:disqus I will reply to you privately via email. Not sure how much I can help but I will try to connect you with some good resources and treatment. Please scroll down to see other resources I have mentioned.

  • ScrambledSquid

    Thank goodness I found this blog.  I need help and am not sure what to do at this point.  Your post eloquently summarized all the challenges I am facing, without going into detail about symptoms and such.  

    Prior to December 12/28/12, I was brilliant.  Not going to bother beating around the bush here.  I also had synesthesia, a near-photographic episodic memory, and was referred to as the Human PDA for my uncanny memorization skills.  I was probably one of the most artistic-temperament types of people as well.

    Also, all the other things listed above in your post.  I was “in the closet” about my high IQ for years, and only realized it once “The Incident” occurred.  The irony of it was that, as you described, I perceived myself prior to this as bizarre, and was only able to see the extent of my brilliance once it was removed.

    I was diagnosed with Lyme disease at the beginning of December, began a strong cocktail of ABs, and waited it out.  I had increasing neurological symptoms that cascaded into an attack where my body was in chemical/neurological pain, and I lost the fine motor skills and coordination in my hands for a few days.  Then the pain finally subsided.  I thought things were looking up.

    A few days later, I was driving in my car, and a “switch” went off in my brain.  I immediately became lost (something that never happens, as I was also known as the Human GPS).  I felt it immediately.  Like nothing was getting in anymore, and I lost the ability to visualize and remember things.  By the next day, I was in the ER, and frustrated with no answers.

    I have all the symptoms of a TBI/ABI.  But here is the problem: nobody has any idea what has happened.  I did not get injured, did not have a seizure/lose consciousness, nothing.  Blood tests also revealed nothing out of the ordinary.  The symptoms were sudden onset, and global, so they also are ruling out degenerative processes.  They claim the ABs could not have done this, or there would probably have been evidence in the bloodwork.  

    At first, my mind was still firing quickly, acquiring new knowledge, but when it came to implementing any functions, it just hit a wall and stopped, like I was incapable of them.  Mainly executive functions were affected.

    I had another strange attack on 1/20, which left me unable to walk adequately for 3 days, and I slept often.  After this attack, the brain functions have dramatically slowed.  The quickness has disappeared, but I am feeling like things are processing through the brain a bit more globally, just abnormally slow and disjointed everywhere.  I am terribly concerned because I have lost orientation to time, and now to place as well.  My personality seems completely blunted, like sections were gouged out (personality meaning different from cognitive abilities and the ego-identification with being brilliant- like, taste in clothes? and food? etc.  i have flat-lined with emotions and cannot comprehend things of any kind on more than a surface level.  My memory problems are increasing.  I have suddenly developed asocial behavior (not out of shame of my handicap, but just a lack for human contact and loss of spontaneity in conversation.)  I fear if it was an isolated incident, it would not continue to get worse, and new symptoms would not be occurring.

    I have had a normal CT and MRI.  Lumbar puncture showed no abnormalities.  I have an EEG and neuropsych eval coming up.  I am faced with the same dilemma that if I score in the “average” range, it means I still took a massive hit.  (And I doubt this, because I can’t do even rudimentary “average” things with ease, like figuring out how to drive somewhere or planning dinner.). 

    I have no idea what is happening.  It all seems very atypical.  But I am afraid it is worsening.  Also, I have a terrible fear of losing enough of my mental capacities to be aggressive enough to seek answers, understand what is happening, and to be able to articulate symptoms to the doctors.  I LOATHE the thought of time passing and this sensation becoming the new normal for me, and forgetting how I used to be.  But I am a stubborn fuck and want to fight this.

    Does anyone have any advice?  People keep telling me not to worry because they don’t know WHAT it is yet, and it may get heal itself (albeit over a long period of time.).  They don’t seem to have a sense of urgency about this (they think it is reversible once we discover the cause), but I also now lack the skills to manage this myself and have to rely on them.  It is an unfortunate situation.

    I think the most important thing is addressing what is causing this ASAP, and then going from there before it does more damage.  Has anyone heard of anything like this?  The only hypothesis I have is that I was somehow poisoned by the ABs?  The stress from this is causing me to have borderline dissociative episodes, and I’m even unsure if it is stress-induced or an organic process at work.

    Sorry I cluttered your comments.  I just need help or guidance in some direction as fast as possible.  Thank you so much.

  • sam

    Awesome blog! I just found it and couldn’t be more thankful for it. Finally I actually feel like there are people who I can relate with. I suffered my brain injury in May of last year. I actually suffered the injury right before my college graduation so I have been very frustrated and confused. I plan to enter graduate school before beginning a career because I feel like I have forgotten much of what I learned. It’s really a day by day process though I don’t know if I will be able to succeed in my classes or my future job. I have been on an emotional roller coaster. Thank you for this though, I find comfort in reading your blog.

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  • Shelly

    Oh my gosh!! I am reading through this post with tears running down my face! I feel like you pulled the words right from my heart. I am aching so bad at the loss of who I was…and yet the doctors think I need to be happy that I am still in the average to high average areas when they test me. Who are they kidding?! I never have known how to be average…and now to try to be average with a head injury feels insane to me. I feel so broken and no one seems to be able to see that. I am a VERY verbal person…I could have given a thesaurus a run for its money, Now my husband stares at me as he tries to piece the words together to make sense of what I am saying. Most people see it as a simple oversight (like calling a linen closet a laundry closet, or transposing numbers in a phone number) but when you have NEVER done this and now you do it on a daily basis, how does it not shake your sense of self? Most people just think I am forgetful or “flighty”…I know I should be grateful that I am not immediately pegged as disabled…but there are times I think it would be easier to handle a worse injury. Knowing who I was and having the doctor say I need to just accept the new person that I am and learn to love that person feels so impossible…how do you let go of who you were when you still think the same? I am so lost as this new person. I’m tired, irritable, and feel afraid to talk in fear that I will say something completely backwards. I am so desperately looking for help from someone that understands where I am coming from. Thank you, thank you, thank you for this post!!!

    • Shelly, first step is to read The Brain that Changes Itself by Norman Doidge. If you have trouble reading, the book is an audiobook and is very well read. Your husband will want to read it too. (Frankly, I think anyone with a brain should read the book but that is another post!)

      The Brain that Changes Itself is all about neuroplasticity and how our brain remaps over time. The book is very well written and a joy to read. It is fascinating and absolutely the most encouraging and hope creating book you can find.

      As I said to Mindy below, you WILL get better! I am here as proof of that.

      And now . . . I am going to go write that new post. You and Mindy have reenergized me to get back to work on this blog. Thank you.

  • Mindy

    Wow, I’m so glad I found this post. I just got the results of my neuropsych eval and learned that my IQ has dropped post-injury by 24 points. But because it’s still in that higher-than-average range, everyone–including the neuropsychologist–is acting like the loss is no big deal. Are they kidding me? My brain was my job, my life, my identity, everything. Just because I’m “still smart” doesn’t mean this loss isn’t tremendous. I guarantee you, if some famous quarterback hurt his throwing arm, the experts would do everything within their power to help him get back to 100%. They wouldn’t say, “At least you still throw a lot better than the average person, so that’s good enough,” would they? Of course not. Yet somehow I’m supposed to be satisfied with where I am now, mentally? Learning to accept my limitations is one thing, but acceptance begins with grief and they’re all acting like there’s not even anything to grieve here! I’m so lost and frustrated and depressed, this post was exactly what I needed–just to know I’m not alone helps a lot. Thank you.

    • Mindy, I am so glad I could help. I love your comparison to the quarterback. So very true!!

      Now for the good news – it gets better; a whole lot better! In fact, now since I am a couple of years out from the date I wrote this post, I need to write a follow-up post to this one to let HIQ/TBI folks know what to do to help their brain regain/remap their smarts. I will try to get to that tonight or tomorrow.

  • Dadamadoo

    Thank you for writing this blog, espcially the bits on high iq and tbi. I am in that situation and am one year post injury. I am a university professor and have to still see if I will be able to return to teaching. I am still me…needing intellectual stimulation but suffering when I chase it down. And doctors, etc. All find me highly articulate. one doctor (not for the brain injury) said to me the other day ‘you don’t look like you have a brain injury’. Like saying …’you don’t look like you have an enlarged prostate gland!’
    How do we show we are suffering inside?!
    Would love to see more posts on this topic,

  • Yael

    I just found your blog. Very helpful. How does someone in our situation get a job/keep a roof over their in this economy? Especially when they are a sober and drug free adult in their forties – single – male. It is hard to get TBI services because they want to treat you like an invalid and you are brighter than most of the social services team.

  • zk

    Thank you!!! for writing about gifted TBI – I totally get it, because that is me too.

  • hello, just find your blog through resilient heart. taken me an hour to get through this page but hooked already. i to am a tbi survivor & very encouraged by your blog. Although the footnote bit was hard for me to look at with the very bright blue words! I shall continue to read my way through you blog. 🙂 very helpful

  • Your blog was EXACTLY what I was looking for!!!
    I am s…l…o…w…l…y… writing a book about my recovery as I have or will have been to just about every level. I am a victim of TBI near my Uni in Scotland where I was working towards a Masters but I was flown back to Atlanta, Georgia (my home) USA by the St. Andrews University after my injury, 6.5 years ago. To Emory University, my undergraduate school plus the beginning portion of my graduate program and spent the next 5 years at the Center for Rehabilitative Medicine. My auto accident occurred just 2 months before my graduation. Needless to say, I did not finish. I was in a coma for 4 months. I have grown up thinking that I did not have such a high IQ because these people have difficulties in their social abilities and I LOVED people!!
    It IS bitter-sweet.

    • Kristin, I just added some subscribe links. When you posted I had just moved this blog over onto WordPress. Hope you see this comment and are able to subscribe. Glad you found the blog.

  • Cate

    Thank god I have found your blog. I teach at a uni in the UK, sustained a head inury and am now awaiting an appointment with a neuropsych for testing to occur. Because I am still articulate (although not nearly as good as before), people including some doctors do not take me seriously when I explain that I am much less able to concentrate / assimilate and understand new material. Your blog is therefore a massive blast of fresh air!

  • Carolyn

    Where can I get help? I now have a child and I thought she was just being very difficult because I am a lousy parent then I realizes she is gifted. Our society is so obsessed with “cleverness” and they think giftedness is something to gloat about so if I say, “Help, I have a gifted child” people would obviously think I’m just trying to show off.
    Only another gifted person can understand. Please help me if you come across any gifted parents who have successfully raised emotionally healthy and happy gifted children.