The whole point of this thread is to allow me to share my experience with a potential ABI (acquired brain injury) and to seek more knowledge about symptoms and hopefully find people that relate to my symptoms. Just a word of warning, though, I am not diagnosed with an ABI. I am NOT seeking medical advice. I would also like to gain understanding of the diagnosis process, but I'm not asking for a diagnosis.

When I was a 3-months-old baby, I fell seriously ill with a severe case of bacterial meningitis. I became profoundly deaf in the progression of the illness, either from meningitis itself or the antibiotics that were used to fight the illness. I'm 22 years old now, and the very idea of an acquired brain injury is new to me. You can imagine that I'm feeling all sorts of emotions about this possibility, because all of my life, I was called a problem child, someone who just liked to constantly get in trouble. For my entire life, I've been experiencing a huge pile of symptoms that seemed unrelated to each other that led me to be hospitalized several times, and I got locked up in jail as well.

I can't remember some symptoms, but I'll talk about the main ones for now.

I have a severe and major anger problem; I'm normally a very caring person, but I have frequent violent outbursts. I literally just lose it. Most times, it consists of screaming at top volume, throwing things, speaking in an extremely cruel way, and yes, punching. I notice that no matter how hard I try, I cannot stop myself or control anything I do in that state. People have noticed that I regress to a child-like mindset when having an outburst. After the outburst, I often feel confused, despondent, guilty, and disappointed in myself for not being able to control myself.

Another symptom I have is the inability to "see" my thoughts. I only recently gained insight on this, and it is definitely unsettling and weird. Everyone I know is able to magically form pictures, words, whatever they want in their mind. I see only blackness. I can consciously force myself to form thoughts, but even then it's very faded and barely there at all. Because of this, I honestly feel as if I'm on autopilot because I have no idea how I'm talking like this or even forming words at all. I do have thoughts, that much is obvious, but it's not there in the conscious mind.

I also have really bad memory loss. I cannot really remember 95% of my life, and I only remember when cued. My memory functions just enough for me to seem forgetful but 'normal', but I can't remember what I did yesterday let alone what I did years ago. I don't remember the faces of my friends, family, etc, after a while of not seeing them. I can remember facts, such as that I've played a certain video game, but I can't remember the storyline or what I did on the video game.

Other symptoms are things such as a minor problem with swallowing, slightly off-balance, slow processing speed, other neurological symptoms and a LOT of psychiatric symptoms resembling bipolar disorder, borderline personality disorder, schizoaffective disorder, schizophrenia, oppositional deficit disorder, conduct disorder, adjustment disorder, psychopathic traits, ADHD, substance abuse disorder, depression, and anxiety. You get the idea. I was not diagnosed with all of that, but I have previously been diagnosed with some of those. I can tell you which if you ask!

I'm really hoping that there are some people on this forum who relate to what I said and is able to answer a couple of questions I have.

1. What is the name of the symptom where you cannot see your conscious thoughts?

2. Is there ANY way to stop an outburst in your experience?

3. What is the diagnosis process like? I already have neuropsychological assessments booked for me, but I'm not sure what would happen.

4. Is there any studies that has been done for what happens to brain injuries after 15 or 20 years?

Thank you so much for reading this far, you're awesome.

#3. Has any testing, brain scans/MRI, or other diagnostic work ups been done?
If long ago , then improvements in technology might be worth a redo..

#4. you might find studies here using your various search words -
Home - PubMed - NCBI

Snuchu,

Welcome to NeuroTalk.

Wow. There is so much you say that I can relate to. I suffered my worst brain injury at 10 years old in 1965.

First, the Neuro Psych Assessment is one of the best ways to understand your condition. Hopefully, it will be administered and reviewed by a Neuro Psych who works with rehabing brain injured individuals, usually working with a neuro rehab hospital. I've noticed there is a huge difference between the office based neuro psych who has limited neuro rehab hospital experience and those with neuro rehab hospital experience. Those with limited neuro rehab experience tend to put more blame on the patient than on the injury.

Understanding your functions will help you learn work arounds. First, you have to accept what proper functions and improper dysfunction truly exists.

There is a way to stop the outburst. First, expect it to happen and learn the early signs of an impending outburst. Then, turn and walk away. It does not matter how right you are in your response, the improper expression of the response is the issue. You have a right to your internal thought reaction but not your external expression. I can go into more detail later.

I carry a small slips of paper in my wallet that says :
Please be patient with me. I suffer from a brain injury that causes me to over-react when confronted with shouting or someone barking orders. I respond by getting loud. Any assistance to help limit excessive auditory stimulation is helpful.

When is a situation where things are starting to get tense, cops, TSA at the airport, etc. I had it to a person in authority. I do not just show it to them. I give it to them. I have plenty in my wallet. The more they really read it, the better their response.

There are ways this can be customized. Some of my TBI friends have speech problems that may make them appear intoxicated or mentally retarded. They are smart people with speech problems and often problems with over-stimulation. Their paper slip says. "I have a speech disorder that may make me appear drunk. I am not. Please help me by being patient."

Regarding the mental imaging issue. I have it. But, more important, I did not always have it so I understand the frustration. I used to have a photographic memory. I could image a page or picture or scene or such. I now need to draw images if I am trying to design something. I do a form of spread sheet. I spread sheets of paper with the various images on my desk.

I just found a word that appear to define this. Aphantasia Aphantasia - Wikipedia

I have used up to 3 computer screens so I do not have to try remember what is on a hidden/cascaded window or tab.

I suggest you consider your brain a special needs brain. It needs special treatment in the form of sleep, nutrition, supplements, environment, tasks, etc. When you establish the optimum set of these factors, you will do much better.

For example, I have to stay away from stressful environments. Certain people and personalities are not beneficial to me. I cannot rely on hearing instructions. I need to see them, too. I need the pace slower. I cannot multi-task. Not worth trying to multi-task. I have ear plugs with me 24/7.

There are many more conditions I either avoid or seek out.

I use typed formats like this forum to communicate the best. I use scrolling back to read what I just typed as my short term memory.

Your lack of hearing adds a layer to your communication struggles as you need to use motor skills to sign. Do you live with those who can easily communicate with you ?

When I am speaking in a small group, I often rehearse what I am going to say. Impulsive comments tend to come out poorly. Plus, I can forget a word I was going to say mid sentence. I don't know if you can relate to a loss of brain to mouth communication functions. Do you have struggles with getting thoughts out ?

Please feel free to tell us anything. We have heard them all except you have added the hearing issue. That should not be a big limit to us understanding your struggles.

My best to you.

Nice to meet you both, Jo*mar and Mark in Idaho!

As far as my knowledge goes, there was a brain scan done around the time after I got ill with meningitis. I think the doctor said it was too early. After that, I did not do any assessments except a psychiatric one when I got locked up. I found out today that I have a neuro-psych assessment booked in only a couple of weeks, so I guess my doctor wanted to have it happen ASAP.

It will be done at a hospital, but I'm not sure if the assessor is experienced or not. We'll see, I guess! I really hope it helps me and my doctor understand what goes on in my brain. I really want to understand myself and gain insight in what proper functions and improper dysfunctions I have, and what strengths and weaknesses I have, so I can finally begin working on my life to improve it.

About the outbursts, should I expect it to happen every time I feel that things are going sideways? I can most likely try to learn how to do that most of the time, but there are times when it happens in less than a split second. There's no time to even think or stop reacting... Someone says the wrong thing to me, coupled with some other factors such as being already tired, irritable, and especially overwhelmed... then just like that, that person is on the floor. Sometimes I say, "Wait, what did I just do?"

The small slips of paper is an AMAZING idea, I will keep that in mind. I already have a card that tells the police to respect my rights as a deaf person, and another card that tells people the number to call the medical interpreting services in the event of a medical emergency. Why not another one about brain injury? Haha.

Aphantasia sounds exactly like what I have. Thank you so much for finding the word! Since the brain injury was at 3 months old for me, so I wasn't aware that my mind's eye was malfunctioning. I always got confused when people ask me to think or visualize things. I have 2 computer screens, a smartphone, and a tablet all at my desk to help me do my things.

Do any of you ever remember your dreams? I very rarely ever remember my dreams. The only times I do, it's usually an especially terrible nightmare that I forget 5 minutes after I wake up. I feel that I probably have frequent nightmares, because there are reports of me screaming in the middle of the night, restlessly moving around, stuff like that. I remember one incidence where I woke up in pain after kicking a cement wall with full force from, I'm guessing, a nightmare.

I'd like to attempt to create a system that works for me, but I forget so much I don't even know what environment is unhealthy for me, what things that push my buttons too much, and rules like that. I remember only when it's happening at the moment, but not before or after.

I love forums and saved chats as well, because of the same reasons - remembering what I and the others said, the ability to re-read my typing and fix errors & make sure I mean what I say. Some things do slip through the cracks, though.

Yes, my hearing loss adds a major challenging barrier in my life. As you probably can see, I am articulate and that brings on problems through American Sign Language because I want to say a specific word and then have to spell it out because there are no signs for that word. It contributes to frustration and when the situation is pressured or filled with anger, it degrades into chaos very fast. I'd say written/typed English is my first language while ASL is my second language. That alone brings more problems to my life because if I choose the ASL option in an appointment, I have to focus on what the interpreter is saying and I often miss statements or misunderstand. I also have to ask to repeat what they said sometimes, and it all doesn't matter in the end because I entirely forget what was said after the appointment.

I definitely relate to a loss of brain to mouth communication functions... I often forget what I was going to say, forget what the topic was, and forget a word mid-sentence. I notice that sometimes when I try to explain what I mean, people get confused or say something that doesn't actually relate or answer what I mean. That frustrates me a lot.

Snuchu,

The first thing I suggest you have checked is your sleeping. Do you have any form of sleep apnea, either obstructive or central sleep apnea. Sleep apnea can be a cause of night terrors and miserable days. I have sleep apnea issues that can make my sleep miserable and days a fog. I take gabapentin before bed to help my brain let go of nervous tension.

Regarding your outbursts and physical reactions, you need somebody to help you change your thought process. People have a right to be total jerks and say stupid, annoying, insulting and degrading things. That is their problem. Your reactions make it your problem. You are letting them control you. From my experience, the deaf community tends to be very demonstrative.

You lack the voice inflections available to the speaking community so you reply with physical motions with your hands, face and even body. You can learn to keep those body actions to yourself. Maybe you can learn a replacement action, like slugging you hands together, if that is not an ASL sign. You would not want to make a sign that appear aggressive. Or, grabbing your head in disgust or pain like a headache.

I find that in hindsight, I can usually see that I missed earlier opportunities to avoid getting upset. You may notice that certain environments make you more prone to outbursts. Visual distractions/stimuli may be part of the trigger. I can usually tell that an environment has exhausted my reserve capacity so I am cocking the trigger. All I need it the next stimulus to set me off.

You acknowledge that being tire and overwhelmed is a problem. These are those missed earlier opportunities to avoid getting upset. "I'm too tired and agitated to talk about this right now." "How about we return to this conversation earlier in the day another day?"

I know that there are certain subject that I should not talk about late in the day, especially with my wife. She gets tired too and we both get frustrated.

I am greatly over-stimulated by sound with visual stimulus contributing to the over-stimulation. You may have a visual over-stimulation limit.

Have you considered a voice to text app rather than or to augment the translator ? Tablet and smart phone power allows great accuracy.

Your struggle with the conceptual limits of ASL sounds similar to my word finding limits. I have had grammatical and vocabulary limits since grade school. I can understand complex words but can not pull them out of my brain to use easily. I routinely use google to check that I am using a word correctly. My biggest struggle is complex sentence structures since my processing skills are lacking.

My doctor observed how bad my brain was functioning compared to how well I function. He was amazed at how I could use intellectual skills to overcome many memory and cognitive deficits. I bet you will test to show executive functioning weaknesses. You can learn to methodically correct for those weakness by using your intellect.

Think of it this way. You know a certain emotion should flow naturally in a certain situation but it does not. You learn to recognize those situations and use method to act like that emotion.

My best to you.

I know that I definitely should get my sleeping checked. I'm not aware of any sleep disorders such as sleep apnea, but I've never gotten a sleep study. I'm sure that'll come at some time after the neuro-psych assessment. However, in my experience, I sleep very well most nights when on a stimulant. I fall asleep decently fast, stay asleep peacefully, and wake up motivated and ready to tackle on the day. Due to unforeseen circumstances, I've been off stimulants for a while now and my sleep issues have become much more apparent. Much more tired during the day as well.

You're absolutely right about people having the right to be jerks. It is their problem, and yes, it is my problem when I react like that. I absolutely WANT to react appropriately and be able to smile and walk away. I feel like the worst human being on Earth when I blurt out cruel things, react inappropriately, or have an outburst. I apologize afterward every time, even if it's their fault, because no matter if it's their fault, my reactions are not right.
The problem here is that it just happens. I realize that I need to learn control, but I've tried for 22 years and all I've managed to learn is to redirect violence towards others to myself. Yes, I hate to hurt people so much, I prefer hurting myself over that. I've tried and still do try so hard, to the maximum of my capabilities, to learn some fraction of control over my rage. It literally just... happens. I suppose there are opportunities for myself to identify before an outburst happens, but most of the time when I realize that I'm in the danger zone and tell people, they ignore that and push me into outburst mode.

I agree that I need to learn how to control my body actions and responses, and most of the time when I'm calm, I do respond in a reasonable way. There are times when I've been calm, but then still say something unfavorable or do something wrong. I admit, not being able to see my thoughts truly complicates that.

It is possible that there are environments that makes me more prone to outbursts, but I can't recall any of them. Visual distractions and stimuli definitely have the ability to quickly overwhelm me, but one thing I don't understand is how I am able to handle video games if "visual stimuli" can overwhelm me?

I've considered a text to speech app, and I do have one, but I've never tried it in an appointment before. I should, but I'm not sure how accurate it is due to it being a free app. I'm pretty sure there's a way, though.

I'm lucky that I'm able to articulate well through typing and writing. It's only because my mom pushed me to read a LOT as soon as I could hold a book up. Because I started well before the developmental standard, I flew through English class easily and always got an A. Math, on the other hand... Absolutely abysmal. I failed 7th-grade math but still moved on to 8th-grade math only to have to repeat it again. In 9th grade math, I had to repeat twice. I only repeated 10th-grade math once, but never got past the 11th-grade math level. I officially dropped out of high school in Grade 11. Never went back.

Executive functioning deficits are pretty much given for me, and there are several other categories that I probably have as well. Is it weird that I know what's right or wrong, which reactions would be appropriate for the situation, things like that, but yet still react wrongly as if I was on autopilot?

Thanks for reading.