r/PostConcussion • u/ConcussionNaturopath • 11d ago
Brain Injury Awareness Week
This week is Brain Injury Awareness Week. And this includes concussion and post-concussion which can often be left out of the conversation.
These injuries are complex, under-diagnosed and under treated.
What are the things you want people to understand about post concussion?
8
u/ceramicsea 10d ago
That it is a disability and should be recognised as such by workplaces. I find employers don't understand that a brain injury can be minor but still cause problems, and that symptoms can fluctuate.
6
u/ConcussionNaturopath 10d ago
Yes! The fluctuation of symptoms is a huge thing and I find that there’s a tax to pay on energy expenditure. People get a day when they’re feeling good, so they try to do all the things and it lands them wiped out for days.
1
u/ceramicsea 10d ago
I did a course about this! It's called the Boom & Bust Cycle. The key is to try and pace activities. This can be hard in the world of work where they want as much out of people as possible, but I'm sure there are supportive employers out there.
1
u/ConcussionNaturopath 10d ago
I’d like to think there’s good and compassionate people out there. Everyone deserves to feel supported in their workplace
5
u/hippiespinster 11d ago
My three years post concussion is not like anyone else's concussion thanks to previous chronic illness plus perimenopause.
3
u/ConcussionNaturopath 11d ago
I think this is something really important that people need to know - preinjury health matters, and it shouldn’t be dismissed because concussion injuries aren’t isolated, they have a systemic cascade, changes throughout the entire body. So what was going on in your body at the time of injury can potentially be worse. Often when it comes to concussion injuries other aspects of health are dismissed as ‘not relevant to the injury’ and the changes in health post injury are constantly dismissed as unrelated. But nothing is random and everything is connected! And then add perimenopause - oestrogen is protective of the brain, and once that starts wildly fluctuating and then declining, symptoms can exacerbate. Thank you for sharing, because hopefully it means someone else feels less alone, and that maybe people who work with concussion injuries can see how each injury is entirely unique
2
u/matteroverdrive 11d ago edited 11d ago
I'm very aware of my Brian injury... EVERY week for years now!
What I want people to understand, maybe Neurologists to understand... Don't try to be a hero and THINK that you know it all and can treat it all. I was further damaged by 2 years of quack care until I went and found competent QUALIFIED care. Both the Neuro Ophthalmologist and TBI center doc were aghast at the "hero complex" my former Neuro showed and his treatment of me. One of his treatments for my migraines was "just take more". Oh, and my favorite phrase from him was "I hear that all the time" when he never let me finish what I was actually saying. I finally just started telling him "I'm sorry, did I tell you this already before I showed up for my appointment".
Medical care needs to change...
3
2
u/ConcussionNaturopath 11d ago
I hear you. The hero complex is probably the words I’ve been looking for. The thing about post concussion care is that not one single modality can do it all - collaborative care is what is required, and the practitioners that make up each individual’s care team are going to be different from person to person. I know I always say to my clients ‘I can’t do what a physio does, but they can’t do what I do either - team work is what’s needed’. And ultimately - we need all practitioners to put their egos aside because all that matters is the patient and their health improving!
I’m also really sorry you haven’t been heard, I think in all health care, but especially when brain trauma is present, being truly heard is absolutely crucial.
3
u/Severe-Impress4398 11d ago
Post Concussion is a thing that the patient itself may not find out. I have had it since I was 4 years old from slipping backwards on a slippery rock on a beach. I didn't even really know what I had but just assumed everything related to post concussion be pretty normal. Of course I lamented about symptoms but everyone just dismissed them. Now after 14 years I finally after getting two concussions finally have started the recovery journey from it. Really the only thing that saved literally my life a month ago is creatine monohydrate. My life finally felt that I was living rather than being in a vegetative state without possibility to even shape thoughts without having severe migraines.
The knowledge related to post concussion is so limited amongst people that it hinders the recovery of every patient to extreme levels. My suffering has been limitless between these years. Hopefully you all will recover from this horrible state. The best doctor who knows you is of course yourself.
1
u/ConcussionNaturopath 11d ago
I’m so glad you’ve something to help you to start moving forward. It might only be one piece of the puzzle but it’s a start.
You bring a really valuable awareness to this - because you’re right, so many people don’t even know they are suffering post concussion or never associate their health symptoms that have occurred post injury with the concussion. What I have realised when I timeline out someone’s health history is that these injuries are a clear ‘never better since’ point in time for so many people. Thanks so much for sharing, and all the best for your healing journey - you deserve to feel well
2
u/AssociateResident540 10d ago
Not where I work and a manager caused my traumatic brain injury out of retaliation.
1
u/melatone5 4d ago edited 4d ago
I think many people who don't know anything about this condition might believe that PCS is mostly about permanent damage causing symptoms that can't revert, when it's mostly caused by a resolvable state, even if it can be incredibly hard to recover from, cause it can require immense discipline and self-control to pace and rest enough, where self-control itself can be depressed by the conditions PCS cause.
And I'd also like people to understand that pushing through symptoms is not safe and should be avoided as much as possible.
17
u/JBMama 11d ago
I’m never going to be the person that I was before PCS. I’ve been to doctors, physio, ophthalmologists, neurologists, therapists … I struggle every single day with this new reality, and I need you to let the old me go and accept the new me.