I am a 23 year old with a Traumatic Brain Injury. I struggle a lot with my health but I’m always trying to better myself and reach my goals. Ask me anything!

what helped you the most so far?

Honestly, therapies and medical treatment are nice but I can’t stress enough the importance of support groups and connecting with others with brain injury. That helped me a lot, especially in the earlier days of my diagnosis. Loneliness and isolation is very common in the brain injury community.

Also, I recently started getting Occipital Nerve Blocks for my headaches and this is the first treatment that has actually helped them. It’s amazing.

I'm sorry to hear that. I'm a lawyer who works with TBI survivors a lot. I'm always amazed at their perseverance despite the obstacles. I'm also surprised by the variety of ways a TBI can affect people. I've never seen two injuries that look the same.

Here are a couple of questions though:

1) What symptoms do you have and which do you find the hardest to deal with?

2) What therapies help you the most?

Thanks in advance for answering.

This will be a really long answer so I will return to this question a little later.

What were the first symptoms you noticed, and did you link them to the accident straight away or was it only after a culmination of symptoms that it clicked?

For the first few months after my accident, I was in complete denial (which I heard can be common). I was determined to continue living my life as if my accident didn’t happen, although that was not working out too well for me. The months after my accident are kind of foggy to me. I do remember that I was experiencing headaches for the first time in my life. I could no longer fall or stay asleep and my entire sleep cycle flipped. Emotionally, I was a complete mess. I got headaches constantly. I got spots in my vision whenever I tried to read. My school work was taking at least three times as long to complete, if I completed it at all. As time went on and my entire life was falling apart, I would tell doctors that there was something wrong with me and I couldn’t think right.

It actually never “clicked” for me. I was not knowledgeable about concussions at all and I had never even heard of a Traumatic Brain Injury. It was actually a TBI patient of my mom’s who suggested that TBI could be my problem after she heard all of my mom’s stories about me and my struggles.

What do you dream about?

I used to have nightmares all the time. They usually involved bad things happening to loved ones.

How can people be more considerate to persons with traumatic brain injury? What are some problems you've had with people's attitudes?

Hope you get better and that things get more bearable as soon as possible!

One of the most important ways to be more considerate to those with a traumatic brain injury is to not make comments, such as, “You don’t look disabled,” “But you seem so smart!”, and the like.

When having a conversation with someone with a TBI, be aware that if there’s a lot of stimuli, it may be hard for us to concentrate or even process what is being said. If someone with a TBI interrupts you, it’s not to be rude. Due to our memory problems, we want to say what’s on our mind before we forget it. Also, don’t interrupt someone with a brain injury. We will completely lose our train of thought.

Another thing to recognize is that many tasks that are extremely easy for someone without a brain injury are extremely challenging for a person with a brain injury. An analogy that I like is batteries. If the average person has 10 daily batteries worth of energy to use, a person with a TBI only has 4. Not only do we have less batteries, we go through our batteries faster. Both our bodies and our minds fatigue much faster.

The most important thing overall is to recognize that we are trying our hardest.

(I’ll add more to this later.)

When it comes to the attitudes that people have, I deal with a lot because my brain injury does fit what people typically envision when they think of brain damage. Lots of people believe that you should be able to see brain damage, that people with brain damage are stupid, that you have to hit your head, that it has to show up on an MRI. None of that is true.

This is also another one that will take me a long time to answer. I’d like to give a thorough answer. I’ll be back to this question.

My mom has a similar brain injury! Her brain raddled when a museum display fell on her about 20 years ago, so the damage was global. Do you experience any emotional dysphoria? She was in a study about how people with TBIs can have the wrong emotional signals sent to their brain in the presence of stimuli.

I have never heard of emotional dysphoria. Do you have any good links with information? I would like to read more about it.

Also, your mom’s story sounds familiar. I wonder if I know her.

Have you had your hormone levels tested? Specifically IGF 1 & 2, Thyroid panel and Testosterone/Estrogen?

You probably know but in case not and for other readers - TBI can damage your anterior pituitary which can jack you up in so many ways. Pituitary hangs from a little stalk in the center of your brain and controls many hormones that can affect both your physical health and mental state. Many TBI have anger management challenges, due to the hormone imbalance.

Some TBI patients see improvement with hormone replacement tx, however due to the expense insurance companies resist it. The damage can only be detected with blood tests, I dont believe its possible to see with any kind of imaging. The tests are cheap, the tx can be costly.

I have not have them tested. I have my thyroid tested routinely due to congenital hypothyroidism but that is it.

Is this something that is commonly tested for in people with TBI?

Oh my god you've described me almost perfectly. Had a head injury at 17, still deal with memory, concentration, word-finding, facial recognition, The Headaches, and visual issues to this day (I'm 21).

How did you cope with the realization that this your new reality for the rest if your life?

Also, what's the best way you have for explaining that this is a genuine disability? In my life, a lot of people thought I'm just "being a pussy" and don't understand that getting a TBI, even mild, can have major effects on the rest of one's life.

Coping with my TBI and all that has happened due to it has been a journey. I guess, with each passing year, I reach a little more acceptance. I don’t have full acceptance yet, but I’m definitely in a better place than I have been. I feel that acceptance is just something that comes with time.

I haven’t found a good way to explain that this is a genuine disability. I’ve written letters to the important people in my life. I’ve given them pamphlets from the Brain Injury Association. I’ve linked them articles about brain injury. I’ve just found that some people just don’t want to learn.

I deal with a lot of people that don’t understand, as well. I’ve received a lot of negative comments. What people don’t understand is that “mild” is only a label based on the length that you lost consciousness and the memory gap at the time of the accident. It has no meaning regarding the long term effects.

I have an adult soon with a TBI. What support groups did you find? My son is probably similar to you in that except for his scar you wouldn’t necessarily know he had a TBI. It’s the hidden disability. It’s not obvious so he has struggled finding a group of similar people.

Are you located in the United States? If you are, google “Brain Injury Association of (insert your state)”. They should have their own website, where they list the local support groups that they have.

I know Facebook has a few online TBI support groups.

I can't find it now, there was another post yesterday withe a TBI.

It threw red flags, and the person got a lot of fundraising for a service dog, and all they had was a FB and a client portal of all these comkonly faked disorders.

Why is there another one now? It is uncanny.

ETA: not saying I disbelieve OP, her story is more believable than the other strange woman from yesterday who just used her FB as proof. It's just weird there would be two in such a short timeframe.

That is actually what inspired my AMA. That AMA rubbed me the wrong way and I wanted to raise proper and informational awareness regarding TBI.

Everything you’ve mentioned is what I’m also going through from two concussions in 2016. I’m still suffering terribly from them. As I was reading your lists of symptoms I just kept saying, “yep, yep...that, too.”

How were you finally able to convey to a doctor the severity of your problem(s)? I have a neurologist whose been putting me through a lot of meds with no luck. He genuinely cares and wants to help but simply does not understand and is about to push me off to a headache specialist.

I’m sorry you’re going through all of that, I know how sad and exhausting and painful it is. I hope we both make at least a good bit of improvement.

I might have even missed something you’ve said in another reply, I’ll have to check later today. I just had to reply while I had the chance because reading what you wrote gave me goosebumps and hope for something because there’s someone else suffering the same way I am.

You need to find a doctor that specializes in Traumatic Brain Injury and Post Concussive Syndrome, because if your neurologist isn’t knowledgeable about that specific topic, you’ll get nowhere, which was my case and the case of many others. To find one, you can get involved with your local Brain Injury Association. Google “Brain Injury Association of (insert your state)”. They should have a website that lists local support groups. Attend one. Talk to other survivors. They should be able to tell you who diagnosed their injury. If you’re not talking to the right neurologist, the complaints just fall on deaf ears.

I am glad that I’ve been able to help you.

You mention severe problems with your vision...Can you enjoy cinema, tv and videogames?

When it comes to media intake, reading books is my main problem with my vision. I can read better on mobile devices because my eyes don’t track well and the size of a mobile screen helps accommodate for that. When I use Reddit, I use larger text and night vision and it’s pretty easy for me to read.

When I watch TV or movies, it’s almost always on a handheld devise so I don’t put the stress on my eyes of having to continuously focus in the distance. I do have other issues when it comes to watching TV and movies, due to my brain injury. I struggle to make it through movies because of their length due to my attention issues and fatigue. If I can manage to stay awake, I need to take breaks, but usually I fall asleep. I also never remember what I watch and always have to have my partner fill me in on what happened during the last episode. Because of that, I don’t watch many series where the plot line carries over from episode to episode.

I don’t do well playing video games on consoles because of the distance I have to be away from the TV and the size of the text. That causes headaches.

I was addicted to Old School Runescape for a while. I would probably have 20 wiki tabs open and notes written down all around me because I couldn’t remember anything. I would get significant headaches from staring at the screen too long.

Do you think it's possible to completely recover from TBI? I think the body has an amazing ability to heal itself - what do you think?

I’m not sure. I’m torn on that topic because when all of my testing was done, it was two years post injury and I was struggling that much. And at 8 years post accident, I’m still struggling. I want to believe that my brain will heal and that one day I won’t have to deal with all that I do, but doctors are very big on patients accepting their “new normal”. That doesn’t give me much hope that all this will go away.

Did you have any imaging done of your brain? If so, did the injury show in the scan?

I have an MRI scheduled early next month to see if there is a reason for the left side of my head feeling so fucked up. I'm wondering if it has anything to do with being knocked out by a sucker punch years ago, or if it's a physical manifestation of anxiety/depression. I'm hoping the latter, but given how uncomfortable it is, how I believe it's affecting other parts of my body, and how they seem to coincide, I'm mot sure.

Im wondering if injuries can go unnoticed in imaging.

It’s a very common belief (even among some health professionals) that a brain injury will always show up on an MRI. The truth is that the majority of brain injuries do not show up on MRI. An MRI only shows structural changes in the brain, such as tumors or brain bleeds. It does not show the functional changes in the brain.

My first MRI was done months after my accident. It didn’t show any signs of brain damage. They did discover a decent sized cyst on my brain but they believe it to be benign.

Even when I was diagnosed with my brain injury, some people would even tell me that there is no way that I can have a brain injury if my MRI did not show one.

One relatively unknown complication that I have due to my brain injury is called Post Traumatic Vision Syndrome. For those with PTVS, the brain and the eyes no long communicate properly, which can cause terrible headaches. I have problems regarding eye convergence, eye tracking, eye focusing (near and far), and peripheral vision. Some of the treatment available for these issues include wearing special glasses (bifocals, prisms, etc) and attending weekly vision therapy which involves many types of eye exercises. I have also received a treatment called Syntonic light therapy.

Did you find this helped at all?

I also suffer from Post Concussive Syndrome (thanks to 13 years of football), though my symptoms seem to revolve around nausea and lack of balance and appetite rather than pain. I don't know if this is related to your situation regarding Post Traumatic Vision Syndrome, but I would love to try this if it's possible. I would do anything to get this to stop. My ENT and my neurologists just keep throwing drugs at me that aren't working.

It did help. My problems are improved but not completely gone. I would like to return to treatment but my insurance doesn’t cover it.

A warning: It seems that many neurologists are not aware of the existence of this condition and vision therapy. I saw a new neurologist recently and was explaining my history regarding my visual issues and they were doubtful of what I was telling them because they had never heard of PTVS. I didn’t have my records on hand but I actually had to have them google my behavioral optometrist and look at her website to see that what I was talking about was real.

It seems that so many doctors just want to throw drugs and mask problems, instead of actually treating them.

What’s one thing you didn’t realise but has made a huge difference since your diagnosis? Things like glasses or slowing things down?

Having the diagnosis itself made the biggest difference! Having the knowledge of what was causing all of my symptoms. Knowing that what I was dealing with was real. Having connections with others who are dealing with the same thing.

In my treatment, I did have special glass that had bifocals and prisms. I did reach the point in treatment where they were no longer necessary so they did do their job.

Slowing down and accepting the fact that I don’t function the way I used to and I won’t always hit the same milestones as my peers was important. This acceptance is something that I still struggle with.

You spoke of ignorance from health care providers, and I have a few questions related to that:

-How do you advocate for your health and what steps have you taken (or needed to take) to get the necessary treatment?

-How hard do you have to push to say, “what you are telling me is incorrect and I know there is something else going on” compared to knowing a doctor truly might not know if there is any answer?

I have not fared well in this aspect. I’ve had doctors walk all over me. After bad appointments, I’ve gone home and sulked... for months. I end up in a ball of tears, barely able to talk, in their office. It’s even lead to suicidal thoughts. I take what other people tell me way too seriously. I don’t deal well with people talking over me and telling me that everything I experience isn’t real.

The problem is that many doctors look down upon patients and do not accept the fact that we may have more up-to-date information than they have. If you’re arguing with a doctor, chances are they are the wrong provider for you and will not give you the help you need. It’s not worth the time and energy dealing with someone who treats you like that. Find a new provider. As I’ve said to some other people, regarding TBI, you can’t just see any old neurologist. You have to see one that specializes in TBI.

Recently, I gave birth to my daughter who is dealing with some health issues herself. Her first pediatrician was absolutely terrible. I’ve had to fight for her health in a way that I’ve never fought for my own. I’ve learned that if I keep fighting, I will find someone out there that will listen. I’ve learned that I can’t give up. I have to pick myself up. My daughter’s current pediatrician is absolutely amazing. It gives me hope that perhaps there’s doctors out there who will listen to me.

I’m still growing and learning how to fight for myself.

I also have been diagnosed with mild TBI. I was knocked unconscious and regained it at the ER. The biggest issue for me is physical exercise, my balance was weakened, learning yoga and breathing techniques has made a significant impact in recovering. What helps you?

Regarding physical exercise, I can’t do much anymore due to pain. It really upsets me because physical exercise is my favorite coping skill too.

Swimming is nice because it doesn’t exacerbate my pain but I don’t have access to a pool. I wish I was able to do that more often. Another thing that I used to do (pregnancy and then having a newborn have gotten in the way) was walk. Getting a dog helped to motivate me to walk more. Although, with all the current events going on in my life now, I haven’t been able to walk her much anymore and I feel guilty.

I have enjoyed yoga the few times that I have done it. I’m not good at self practice and really benefit from the motivation of others that comes from a group class. Transportation and money have an issue in the past so I haven’t engaged in yoga much. Last week, I found a local class close to me and attended it. I hope to keep going.

Is there anything you were bad at before that somehow you are good at now?

I am not one of those lucky people.

It seems that people are wholly unable to grasp the memory problems, even worse than them trying to imagine what depression is like.

Do you feel like you just can't seem to explain to people what it is like to constantly forget some things but not others in an apparently completely random order, to the point that you are satisfied that they have got it?
I've come to the conclusion that this is impossible, empathy just does not reach as far and too many glasseyed people take the motivation out of it.

​

Hope a lot of it heals for you!

I have come to the same conclusion. Many don’t make the effort to try to understand those who function differently from them.

Lawyer practising personal injury here.

​

What were your symptoms in the few days immediately following the accident? TBI's raise a lot of suspicion because many of the symptoms are subjective. Many insurers will pounce on plaintiffs if they didn't experience severe symptoms following the accident, even though they all know that biologically it is entirely possible.

Honestly, I was too preoccupied by my back injury and that was the focus of all of my attention in the immediate days to even notice what was going on with the rest of my body.

How long after the accident did you first notice the symptoms?

As I said in another reply, I wasn’t accepting of the fact that my accident even happened and was in denial over everything. The symptoms were there early on but I never made the connection.

How was your relationship with your SLP? How competent did they seem working with someone with TBI?

My neurologist (who has since moved) seemed to be the only doctor in my county that is knowledgeable about brain injury and I believe that she would always send her TBI patients to the same SLP. Because my SLP worked hand-in-hand with my neurologist, she was good with TBI patients. I never experienced any ignorance from her. I saw her for a while after my diagnosis. If I ever go back to school, I would likely go see her again.

Did your preferences for various things change after the accident? Was there any personality change?

At that time in my life, as with most teenagers, my preferences were always changing.

I suppose you could say there was a personality change, regarding to how emotionally unstable I became.

What would you do if you weren't suffering from the injury?

Edit. Something that the injury prevents you to do now

I try not to think about that much, but had my accident not happened, I probably would’ve finished college by now. I’d have a job. I’d have more hobbies. I haven’t given up on those things happening. My life timeline is just very delayed.

One of my goals is to get my symptoms under control enough to become an EMT. Some people have told me that it’s not possible and that it will never happen but I won’t give up hope! I also would like to work with animals in some way. I haven’t given up on that either.

do you believe in any sort of alternative therapies out there?

I haven’t tried many alternative therapies but I’m open to anything that could perhaps help me.

I went to a chiropractor for the musculoskeletal pain caused by my accident and it did make a huge difference, but we hit a plateau in treatment. I also went to an acupuncturist a few times but didn’t feel any difference.

Did people treat you differently after the accident in a way you wish they didn't?

Yes. Social interactions and family dynamics have been severely impacted by my injury.

I’ve never been a social butterfly. I did have a small group of friends prior to my accident but contact with all of them faded away after my accident. I suppose teenagers live in their own little worlds and when I was no longer living a typical teenage life, I was no longer relevant to them. I really beat myself up a lot due to my loneliness and lack of friends. It really depressed me. After a few years, I just came to terms with the fact that I was alone and didn’t have friends. That’s pretty much how I function to this day.

Regarding my family, without going into to much detail, we were very dysfunctional. My household was going through some significant changes shortly after the time of my accident and it was taking a toll on everyone. With the effects that brain injury can have on a person’s mental health, I was a absolute emotional wreck. My family would constantly have me admitted to psych wards for extended periods of time and have me put on multiple psych meds. It was a very dark time in my life and honestly, sometimes I’m surprised that I survived it. After my diagnosis, all of that stopped. I was taken off the psych medication. My family stopped throwing me in a psych ward at the drop of a dime. All of these things that they had labeled as “defiant teenager” (which they labeled me as because I stopped going to school due to pain, sleep issues, anxiety, and cognitive problems) were just due to brain injury. My neurologist assured me that I was none of the things that they had labeled me as. My life calmed down significantly after that.

Now that I have my diagnosis, one of my biggest complaints is that people tell me that I am too smart to have a brain injury, or they just treat me as if my struggles aren’t real because I’m smart.

Two sides of the same question, how your journey is impacting relations with friends, and what advice you would give to friends around you? Thank you for sharing this, I learned a lot!

You’re welcome.

I’ve always struggled socially. I had a few friends before my accident but after it, contact from my friends faded away. We were teenagers and most teenagers live in their own world. It seems that once you’re not living the typical teenage life, you’re no longer relevant. In the early days after my accident, I beat myself up over my lack of friends but now it’s my norm.

Advice to friends: Please, keep reaching out to me, even if I’m isolating. I may be overwhelmed with all that’s going on. I may be struggling with day to day tasks. I still want to be friends.

How hard was it to accept the new circumstances following the injury?

Very hard. I guess, at times, I still haven’t accepted it. I went from being at the top of my class to dropping out of school. I went from having multiple sports practices a day to being completely sedentary. I went from having so many doors open for my future to having a lot of them slammed in my face.

The fact that my injury was undiagnosed for the first two years and everyone was telling me that I was fine certainly didn’t help.

Are you going to Physical therapy and if so do you enjoy it?

I'm a Doctor of Physical therapy and have always found TBI/TBI rehab to be interesting. Do you have memory problems? Vestibular problems?

Thanks for your time.

I’ve worked with many different physical therapists over the years to treat my back and neck pain from my accident. My current physical therapist is my favorite. She’s the first pelvic floor physical therapist that I’ve seen. (I’ve dealt with bladder issues since my accident.) She’s treating my pain in ways that other therapists haven’t and focusing on areas that no one ever bothered to work with. She acknowledges many of my problems and pain are connected. It’s definitely the most intensive physical therapy that I’ve done but I also think it is the most helpful.

I have memory problems but I do not have vestibular problems. Although, I did have one physical therapist mention that she was picking up on some balance problems.

Can you smoke weed? might help...

I’ve tried it in the past and it’s helped with my pain, but sometimes it alters my mental state in a negative way. Having just been pregnant and now raising a newborn, it is not an option for me anymore.