Howdy. First post here and I'm hoping to get some advice.

About 30 years ago, when I was 5, I was hit by a car and hospitalized with a concussion (probably grade 3 as I was unconscious for at least 15 minutes.) My family has said I had a drastic personality change, going from very outgoing and extroverted to very withdrawn, shy and introverted (which I still am to this day.) For a long time, I tried not to use it as an excuse for success or failures in life, but now I'm not sure sure. I hit most of the diagnostic criteria (no headaches, but definitely fatigue, sleep problems, concentration problems, personality change, etc.) I've been diagnosed with depression since I was a teenager. I was diagnosed with ADHD recently, but the symptoms definitely go back to when I was a kid.

Can TBI have effects that last decades? I'm getting to the point where it is harder and harder to function. Meds have helped control my depression, but my ADHD is out of control. I'm taking 90mg of Adderall today and that is still barely enough to let me be functional and productive at work. I can't up my dose and I can't take a "drug holiday" due to the nature of my business (I help run a small family business and am on call 24-7)

I made an appointment for a neurologist next month, but I'd like to know if I'm looking in the right direction. I feel like the cocktail of drugs helps get me by, but doesn't fill me with hope for the future. I know I should also see a psychologist, but the unpredictability of the hours of my business make that difficult (as well as being able to actually sit down, research and find one I like.) If so, does anyone know what hospital/clinic/etc the NYC and Philadelphia has the best PCS program? My wife got a recommendation for a neurologist in Columbia, but I'm not so sure his primary specialty deals with concussions.

Thanks!

Boaty,

Welcome to NeuroTalk. You've come to the right place with your question.

I doubt you will get much help from any normal doctor. You would need to find a doctor who thinks outside the box.

Yes, mTBI effects can last decades or a lifetime. But, we can still live full lives even with our struggles.

I was injured at 10 years old in 1965. I have never been the same since. I was unconscious for about 30 minutes and hospitalized for 3 days due to slurred speech. My personality changed. My academic skills became a roller coaster ride. I started a lifelong roller coaster ride in and out of depression.

Back in the 60's, nobody knew what to do with me or even took a shot at understanding my struggles. Today, you have a lot more available.

I have had subsequent head impacts which increased the roller coaster ride.

I have learned a lot of work-arounds and accommodations.

The most important things were, brain health nutrition including supplements, designing my occupational pursuits around my strengths and weaknesses, accepting that I have some weaknesses that are due to injury and not personality/behavior, and understanding that my personality struggles are my responsibility with a need to be accepting and open about them with others so they can help if they choose.

Regarding you. Without knowing more specifics, I take some shots.

ADHD may be a false diagnosis. The concussed brain can have similar symptoms to ADHD but the cause and remedy is different. In PCS form, it would be called 'high distractability' due to the brain's inability to filter out distractions. My brain tries to process and make sense of everything, auditory, visual and tactile. I have to choose the environments and activities to pursue or I risk trouble.

The personality part is likely due to a loss in ability to properly recognize and understand social cues and facial expressions. This is due to an injured part of the brain. We tend to misread people or over reacts or a have myriad of other struggles.

My recommendation would be to look for a Neuro Psychologist with a good track record and understanding of long term struggles with brain injury. A neuro rehab hospital would be a good place to start asking.

I'm concerned that you may be taking a drug cocktail that is working against itself. Adderall is a powerful stimulant. The injured brain needs to settle, not be stimulated. An anti-depressant tries to stabilize chemistry. Could the Adderall be working against that ???

What meds you are taking ?

Are you under the care of a psychiatrist or other doctor who is prescribing your meds ?

Good sleep with all of the stages is extremely important. I bet your bad sleep days are miserable. Mine are.

Here are some places I found. I know the concepts to look for. Multiple disciplines/specialties is usually good.

http://weillcornellconcussion.org/about-us/our-team
Barry Jordan, M.D. in White Plains looks interesting. The drive would be worth it.

NYU does research but their web page is not exciting.
http://nyulangone.org/locations/concussion-center
NYU has group psychological interventions. Groups can be helpful.

I have lots to say but this is a good start.

btw, A brain injury support group with a caregivers group would be a great find. Wives need support too. My wife gets great benefit from our brain injury support group.

What kind of job do you have in the family business ?

My best to you.

Thanks for the reply, Mark. It wasn't until a few months ago that I've really started suspecting that the TBI could be the cause of my various issues, so I'm glad I found a place where I can bounce ideas off people.

Right now the ADHD is the biggest problem I face. I agree that it may not exactly be ADHD, but it is a convenient short hand. I think of it as more being an addiction to stimulation, and I can remember this going back as far as grade school. No matter where we went, I always had a book on hand. I'd read through each meal, and even during school, mid-lecture. At one point, I was getting a ride home from baseball practice and I was jittery as hell. I remember trying to figure out what was wrong, only to realize I didn't have a book to keep me entertained. Today, I'm either hyper-focused on something I find interested or I'm unable to function. When I first went on Adderall, it was the first time in my life I could sit down and, say, work on a spreadsheet for more than 3 minutes at a time without feeling a drastic need to do something else. Unfortunately, the tolerance built pretty quickly. I'm not as bad as I used to be, but it is still a struggle to get through any drudgery. It's so bad that I can be driving, listening to a podcast, and still feel a strong urge to pull out my phone to do a crossword puzzle. So, I'm not really exaggerating when I consider this to be life-threatening. I NEED to get it under control. Even without the temptations of distracted-driving, it's a miserable feeling to constantly need to be stimulated. I'd love to have the ability to sit still and be at peace for a few minutes without going out of my skull.

Until then, I need to be able to work, not only to pay bills/mortgage, but I have customers (including police stations, doctors offices, etc to take care of.) Taking 90mg of Adderall a day leads to sleep problems, so I take Ambien at night. If I lessen the amount of Adderall, I either can't focus or get so tired I can't get out of bed. If I don't take Ambien, I'm up all night. I have no idea how to begin to break that cycle. I AM under care of a psychiatrist, but we've been mostly working on making sure I can function on a daily basis. I'm hoping a neurologist will give me a path to escape.

You are correct about over-stimulation. Noisy environments make me sleepy, especially if they are cacophonous. That makes parties difficult, or even visiting my family (my sister and her kids have an infinite amount of energy and volume.) You are also correct on expressions. Everyone tends to look the same to me, until I get to know them well. I can recognize obvious cues (smiles, frowns, etc), and context really helps, but I struggle trouble with more subtle expressions. I've started relying on my wife to help suss things out. I've also noticed that I appear to have symptoms of an auditory processing disorder. It isn't uncommon for me to hear someone say something, but it sounds like gibberish. Then two seconds later the meaning coalesces in my brain. It's like there's a traffic jam between the part of my brain that processes sound and the part that interprets it into meaning. My wife and I have figured out a few work-arounds (I try not to automatically say "what?" whenever she talks and if I do, she gives me a few seconds before answering.) This happens if I'm distracted (most of the time) so we agreed on the key word "focus" to help me, well, focus.

I'm lucky enough to be married to one of the few people on the planet that can tolerate all of this. I really don't have any friends, other than my wife's. She is very understanding, and my hyper-introspection allows us to recognize problems and develop tools to deal with them. For my part, I'm freakishly introspective and have been able to recognize behaviors and tendencies that need to be kept under control, For instance, I've come to realize that I LOVE being contrarian and pointing out to be people why they are wrong. Nobody's complained about it, but I caught myself doing it all the time. Nobody wants to be around someone who contradicts every thing they say. Since then, I've been able to start to recognize when I'm about to argue with someone over something trivial and stifle the impulse.

We are both introspective enough to recognize when arguments that may be frivolous and drop it before we fight over something silly. In fact, we've never had a fight in almost 10 years. There really aren't all that many people I want to be around for more than a few hours, so I'm pretty damned lucky to have found someone.

My company is a 4 man operation. We sell VOIP phone systems, IT services, email hosting, etc. I do all the tech stuff with a guy we hire for help. I'm at my best when troubleshooting problems or coming up with solutions to fit our customers needs. I'm almost useless when it comes to actually implementing them. Along with the Adderall, I get through it by constantly listening to podcasts (which keep me entertained, but can be exhausting trying to process while concentrating on work), music (not as exhausting or not as entertaining) or streaming movies. In the rare cases that i have a project that interests me, I can go 12 hours or more on that task no problem. Getting interrupted or being forced to turn my attention to another issue feels like something is tearing inside my head. In other words, multi-tasking is difficult.

Anyway, if nothing else, thanks for letting me spill my guts. The only person I have to talk about this is my wife, and there's only so much a person can stand hearing someone else ***** about their problems non-stop. I do have another question related to my injury, but it is somewhat off-topic so I'm going to start a new thread.

Wow, I understand what you mean. Mundane tasks and activities can be misery. I need tasks or activities where I am either being exposed to new information or needing to solve problems.

Do you struggle with anhedonia, a lack of an ability to experience pleasure ?

The contrarian issue could also be part of a rigidity of thought symptoms common to brain injuries. The brain feels a need to perfect, correct, or complete a concept. It takes a lot of discipline to overcome the urge.

I had to learn that even thought I think I know what is right, I don't have the right to nor is there a need to force this on others. This same concept fits with anger. Just because I emphatically know somebody is wrong and has cost me time, effort, insult, embarrassment or other discomfort, I do not have a right to get angry.

This rigidity of thought issue is quite a burden but we can be functional. Wives are a great asset. Mine will lightly hold my elbow. That is our cue.

I wonder if you may have a hormone or neurotransmitter disorder. Adrenal system dysfunctions are not uncommon. There are some blood tests and saliva tests that may help. Pharmasan Labs is one source. They have a conflict of interest because they also sell the supplements/treatments as NeuroScience, Inc at https://www.neurorelief.com/index.php?p=home

It would be worth asking about such testing and a referral.

One of the clinics I listed may have a behavioral psychologist who can help you, too.

Your sleep issues may be a big contributor.

But, I think you really need to get started on a brain health supplement plan like in the Vitamins sticky at the top of the NT PCS index page. Blood work to determine your B-12, folate, magnesium, D-3, hormones, Thyroid, and more would also be a good start.

Yup, that's it exactly! I am never happier then when I am either experiencing something new or solving an interesting puzzle (or skydiving.)
The sheer amount of discomfort I experience when I'm not mentally engaged is torture and I'm really hoping there will be a better, permanent solution out there rather than popping Adderal for the rest of my lifel.

No, I don't think I have anhedonia, although I really had to think about it after reading the wiki entry.* I can and do feel pleasure from social interaction. I actually really enjoy hanging out with a small group (no more than 6 or so) of close friends. The reason I don't have friends is a combination of shyness (I have a ton of trouble talking to new people in uncontrolled situations), introversion (too much stimulation can make me tired), aging (my wife and I chose not to have kids, all of our couple friends are popping out babies), depression, work schedule and environment, familial tragedies and so on.

I do have something else that seems related, but I'm not sure if there's a term for it. Basically, thee's always a part of me that is detached, self-conscious and self-aware that I cannot give into the moment. I cannot give into passion, intense emotion, etc because I end up feeling ridiculous. That's not to say I don't feel emotions. I just can't ever lose control and give in to the moment**. I'm not sure how to begin to deal with that. How do you try to get out of your head? I can't remember a time when I wasn't intensely aware of my own behavior. I'm not much of a drinker, but when I do get drunk, I'm always quite aware of my behavior and what I'm doing.

The contrarian thing is a self-esteem issue. I think I'm trying to prove how smart I am by pointing out flaws with other people's arguments and plans. It's not a behavior I learned, it's some weird sort of nerd-instinct. I think, in my head, when I point out a flaw in someone's argument or fact, I'm hoping for praise about my keen insight, intellect or some other ********. Of course, the reality is that no one enjoys having everything they say nit-picked and torn apart. I'm pretty sure I've been doing that most of life and once I really became aware of it, I've made a pretty strong effort to keep it under wraps. It can be hard though, as there is a strong compulsion to correct people when they are wrong. On the other hand, I'd make a great no-man if anyone needs a professional devil's advocate.

I guess I should mention this is a particular stressor in my life in that, somehow, my family and I have drifted apart politically. There's a bit of MAD truce between me and my family to prevent screaming matches. I basically keep myself estranged from them, as much as one can in a family business.

Other than my family, I don't have much of an anger issue as I try to avoid conflict whenever possible.

Thanks, I'll look into neurotransmitter testing and bring it up with the neurologist.

*Just a disclaimer that I know one cannot accurately self-diagnose oneself, especially without training or study in that field.

**Which, yes, does lead to intimacy problems as well a general discomfort trying to deal with other emotional situations. I

Anhedonia is not an exact diagnosis. I just know that I do not experience the pleasure in many situations where I used to experience pleasure.

Ha! Is that medical term? I am positive I suffer from that Many things from which I used to experience pleasure pre-injury I certainly cannot. Looks like it is also a form of depression. I tell people some of my brain circuits are permanently broken because of brain contusion and they have no idea of course.

Then I read this in Wikipedia and I always feel very depressed in mornings and feel ok in the evenings and night. This is interesting.

Significance in depression
As a clinical symptom in depression, anhedonia rates highly in making a diagnosis of this disorder. Some people describe the feeling as being "strung out". The Diagnostic and Statistical Manual of Mental Disorders (DSM) describes a "lack of interest or pleasure", but these can be difficult to discern given that people tend to become less interested in things which do not give them pleasure. The DSM criterion of weight loss is probably related, and many individuals with this symptom describe a lack of enjoyment of food. People suffering from anhedonia in association with depression generally feel suicidal in the morning and better in the evenings as sleep seems the only escape resembling death and can portray any of the non-psychotic symptoms and signs of depression.

It's hard for me to say as I don't have many memories pre-accident to compare to.

Anyway, thanks for listening to me purge. I had a lot to get off my chest. In the meantime, if anyone does know any specialists in the NY/NJ/PA area that deals specifically with long-term concussion effects, let me know.