willgetbetter,

Your opening statement, "Sometimes I wonder if this PCS thing is all in our heads"...Hmm. You came to this website seeking information on dealing with your post concussion issues and readily accepted advice. We all did and still do. But to make a generalized statement about all of us is so wrong on many levels. You experienced a remarkable change in your status only 7-8 months after your injury. For that I'm glad for you.

But for the many others of us who have dealt with ongoing issues from PCS, mine going on 20 months and others here much longer than that, you simply cannot tell us we are" reachng or overexxagerating our symptoms" because you have not experienced the truly prolonged changes that are life-changing and disabling.

Like Mark always says, "If you've seen one brain injury, you've seen one brain injury." You were fortunate enough to have most of your symptoms resolve and return to most of you pre-injury activities. Yet you experience some kind anxiety about the symptoms that remain. Join the club. I don't know if any of us knows exactly how we are to recover and when that recovery will finally end. I know I am more acutely aware of each symptom, although being aware of them does not mean I become over-anxious or fixated on them. It simply means I am need to be aware of what my new set of limitations are, and this is encouraged in brain rehab so you don't get over-fatigued or experience any potentially dangerous situations.

We need to understand one another on this site, and not be making negative generalized statements here. It is hard enough to get people who have never experienced brain injury first-hand to "believe" us; we don't need to cast more doubt and add to our own problems by not supporting one another. Please, let's all be understanding of each one's unique experience.

Take care, M-i-m

M-i-m, I wish I could thank you a million times.

Interesting question.

One thing that I consider is that I can't say for certain what I really felt like before my TBI. There are about 5 weeks I don't remember anything, and human memory is subjective and continuously influenced by new events and stimuli. All I can say is the way I am today is the "new normal". I'm fortunate in that I am able to work and move forward with my life. The occasional vertigo and other obvious symptoms are things that I just have to deal with. My emotional state varies, and I have no objective comparison to the way that was before.

I'm doing significantly better than I was 3+ years ago. In the beginning, I second-guessed myself a great deal.

I don't really second guess myself anymore. I see this as a sign that I am improving. I didn't second guess myself too much before the accident I was in either... I do it even less now.

I have returned to being a confident individual about what I can and can not do. But I can do a lot less than I could before the accident I was in. I have had to re-learn what I can and can not do. I had to relearn it as an adult, when learning was more difficult for me due to cognitive impairments that I was trying to learn about. It has felt like a paradoxical process.

I remember second guessing myself a great deal and lacking confidence in my own analyzation skills after the accident because of the concussion. It's because my brain wasn't functioning well enough so I relied on others to help me gauge my reality.

It's a truly awful place for any adult to be in. It's an awful process for anyone to be in...

It's VERY difficult to learn how to be in the world suddenly with completely different abilities/skills, more specifically with severe cognitive impairments, after doing things one way through one's entire life beforehand! I'm sure you can all relate.

I do not believe that we are making mountains out of molehills. At least, I am not. Perhaps some people are... But I do believe that thinking about it this way is a compensatory strategy to help us to accept what has happened to us. I also think it may be difficult for people around us to hear about what we are dealing with on an ongoing basis, so perhaps thinking about it this way helps us to complain less frequently about it...

I think recovering from a tbi is an arduous process. It is the mountain.

I think some of us are ruffled by your statements because we live in a prison of sorts.

This is in my brain because it's damaged but not fabricated my emotional mind.

My life was full and active with family, friends, career, independence, and so much more before the accident. My family and I have lost so much.

There is no big payout, no benefit to me to stay this way nor a benefit to my family.

When someone experience a healing or success at kicking a habit they can have a righteous and degrading attitude towards others that can't do the same. The whole, "Well if I can do it anyone can do it!" mentality is detrimental to those not successful, and it's offensive. Healing from this is not a choice.

I'm sure a good attitude helps but if choosing to be healed worked, most would not be injured or sick in this world.

I am happy for you that you've healed, truly. After 18 months of this catastrophic life changing event I am happy for anyone that can escape the lasting damage of this type of injury.

I'm wondering if your comments come out of ignorance since you healed and are not living with this still. I don't mean that disrespectfully. Just that there may be things you don't know you don't know. We are all ignorant in some way or another. I hope you never know the deeper extend of what many of us go through here.

Jace

Thank you, Jace.

The medical evidence from C.T.E studies is overwhelming: Concussions cause PERMANENT brain damage. Experts, like Dr. Daniel P. Perl, the director of neuropathology at the Mount Sinai School of Medicine in New York agree.

Some people recover better than others after TBI - but nobody's brain will EVER be exactly like it was before the injury.

Ironically, I have found that some of the patients most compromised by brain injury are the ones most convinced that they are fine. Robbed on self-reflection, they are unaware of even the most outrageous aspects of their behaviour.

My neuro psychologist told me that she had a patient who, among other things, simply couldn't accept that his MVA had robbed him of sight in one eye. No objective evidence, including, covering the good eye, could convince him.

I had a gentleman in my rehab group who couldn't understand why he was at the hospital, because he was fine. The poor guy couldn't control his bodily function, swallow properly, focus his eyes, refrain from making sexually inappropriate comments or remember a conversation for more than a few minutes. It was just so sad.

With TBI patients, understatement of symptoms is a much bigger problem than overstatement.

Youre right hockey the brain cannot regenerate itself, therefore it will not be the same as before the injury. Our bodies themselves can heal (for the most part) because the body is programmed with stem cells to regenerate losses. The brain for whatever reason does not have stem cells to regenerate itself (Im a molecular, cell and developmental bio major). I can go on and on but the fact is everyone is different

But this forum has helped me a lot, raised my awareness and knowledge. I wish i found this place after concussion #1 and i would probably not be in my situation. But that is in the past. Also this forum has scared me too because some of the regulars and others have shown that this battle can be a long lengthy one. Severity of injury and age are probably major determinants of time for healing and chance of full recovery. Nonetheless, i will continue to battle and we all need to. Te truth is NO ONE knows much about the brain. It is complex and the best neurologist on this planet can say all they want but the brain remains a mystery.

This PCS is probably a combo of things, but they cannot observe the brain because if you touch it it will go into shock and bad things will happen. Looking into many research papers i can tell you all the brain;s main strength is not replacing the neurons but adapting to the situation. If neuron A and B are gone then C must take over. This obviously has its limits but if anything at least have comfort knowing that for viewing and typing on this forum, something "good" must be happening.

It IS absolutely "all in our heads"... since its a BRAIN injury!

But if you're asking if I'm making up my symptoms or exaggerating them... nope, sadly I'm not. I did not make up my MRI results that showed brain damage 2 years after my injury and I did not fake or exaggerate my neuropsych assessment results either.

I farm and my available workload has not changed and I used to work sun up to sun down and often a bit longer with just enough breaks to choke back enough food to stay alive and now I barely have energy to do the bare necessities to keep everyone alive and we downsized dramatically following my accident. My fatigue is real and not made up in the slightest.

If I try to push through the fatigue, I run risks of increased falls (and further injury), my head will feel like it needs a hole drilled in it to release the pressure and my emotional state becomes volatile. My ability to speak or comprehend goes way down and operating machinery or working around large animals becomes extremely dangerous.

As others have mentioned, I'm more likely to do my best to not look disabled or affected in any way.

This means I often don't use my cane, even though I'm supposed to always use it... my rehab team has compromised that I only use it when I'm out in public... I probably use it 80% of the time when I'm in public, but never when I'm at home.

I'm more likely to overdo it than get enough rest. My rehab team is always lecturing me about resting and sleeping more and is always looking for ways to incorporate pacing strategies that I will actually use into my life.

Perhaps there are some people that enjoy laying around and doing nothing, but I'm not one of them and I would guess that the other people that are on this forum complaining about not being able to drive or exercise etc are not those people either.

Since brain injuries are nearly invisible, people with brain injuries have a hard enough time being taken seriously by their doctors, insurance companies, their families and friends... seems unfair to be invalidated on a tbi forum, of all places.

Starr

We are invisibly injured, and our symptoms are real. I know I underplayed mine, but did get better, only to get worse until I had to drop out of work in order to heal.

Recovery is real too. Learning to manage our symptoms is a skill we have to learn and to accept whatever the new normal is going to be. We can still have full lives within this mystery of pcs.

I am thankful for the internet. I've gotten so much good advice here, sharing here, and therapy here.

thank you everyone and Neurotalk

Heal on!

poetrymom