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Chronic mTBI and unrelenting symptoms. Is this my life/future?
I’ve had 4-5 concussions and dozens of subconcussive hits over the past 12 years but appear outwardly normal despite major functional impacts that has left me out of school/work for the past 2 years.
I’ve avoided disability because my goal is to go back to work but i’ve never felt up to it between the constant headaches that become unbearable with activity, stimulation etc and fatigue. My symptoms are tolerable at rest but once you throw in sustained physical/mental activity i’m done. I use to work 13 hour shifts effortlessly.
MRI came back normal, DTI came back as widespread diffuse axonal injury across 42% of measured white matter tracts. This is pretty extensive and probably shows the micro-structural effects my repeated concussions have had..
I bumped my head again this week, moderately hard nothing crazy but the headaches have gone from tolerable to unbearable and being on the phone for more than an hour makes me want to lay in bed fot days. Of course when i was going to go back to school and see how things go.
Where do i even go at this point? Doctors are largely unhelpful and i feel like im “brain injured, but not brain injured enough”
I had a neuropsych test done and i had a lot of variability and weaknesses show up that align with the abnormal dti, but the neuropsych wanted to attribute most of my issues to mood…
I feel like im dealing with something no one understands, no doctor knows how to treat. Disability is my worst nightmare and no one wants to tell me I'm not going to get better after 3+ years of chronic debilitating symptoms. I’ve felt some improvement but this latest bump to my head has brought things back full force.
Just feeling really lost and alone…i just saw my doctors 2 weeks ago that i was feeling well enough to try and go back to school and see how it goes before i bumped my head again.
Is this really my life/future?
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Omg someone that feels my pain! Except for I have had at least 8 or more significant concussions since I was 10 years old (1973- car accident before seat belts were not legalized) and the worst one happened when I was 16 ( when some friends of mine were gouging around on a old farm when we came across some old chicken coups that were no longer in use and for some unknown reason we started climbing on the coups and found a bunch of chicken wires on the coup and noticed two electrical wires that were low hanging connected to a transformer the was also low hanging which you could almost touch with a baseball bat and then some of us started throwing the chicken wires up at the wires and before to long one of the chicken wires made contact with boy electrical wires and blew the transformer-I was less the 10 feet from it when it blew and needed help getting home from a friend of mine because I kept passing out. I was unconscious/ coma for 3 days and my parents couldn’t wake me up for 3 days and had to request our local doctor to come and see me at home!
A few years ago I now believe I experience a Concussion Blast Injury and have suffered the consequences of it since it happened. I am now 62 and life has been difficult suffering from difficulty learning and I have had approximately 20 jobs.
I have seeked medical attention for so many years but no one has treated me with the medical attention I need- I really do feel your pain with getting treatment for it
I know how difficult it must be for you and I hope you someday you find some relief
Sorry if this is not an appropriate response to your reply.
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3 Reactions@rackrunner
to be honest tests do probably need to be run. the second opinion always helps most times. get a bike helmet, get use to wearing it until your brain can heal up some, I'm no doctor but have had many head injuries. years with migraines because of them. the brain given the chance will heal it takes a very long time, i am not talking just a couple months either. try a year maybe more depending on the damage. i have on now looks like half an egg but is keeping me from damage. get looked at seriously that many hits can be daunting but they have great doctors at mayo clinics. have a blessed day and ill send a prayer for you too ========== sent.
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2 Reactionshttps://counterstrain.com/
Find a PT who does Counter Strain .
It’s improved my life dramatically.
Much less pain and brain fog.
I see there’s another from this grp that says the same thing.
I had a TBI at 5 and two concussions. I can relate to what you’re all saying.
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2 Reactions@lynne123 - glad you found something that works for you.
thank you for the hug.
thank you for the hug you put out.
I could have written this; it is a familiar story. I'm so sorry you are needing to deal with this. I completely understand the "It's all in your head" attitude. Yes, actually, it is, but no, my whole body feels this from my glitchy, hurting head to my non working toes. Ugh! I'm broke, homeless, and tired. I want to, need to, work, I need a place to live, I need a neurologist who won't blow me off as a psych case. Is there a treatment that works? Is there something I should be doing to help my brain and body work better? The progression of symptoms is disconcerting, but I don't even have a diagnosis, so I don't know what to do nor what to expect. Can I make an appointment at a Mayo Clinic and find help, or is that a waste of time and money? Thankfully, I have medicare. I can't imagine going through this without insurance. And the guy who ran me down on my bike (2 years ago) with his bike is going on with his happy life. Yes, I forgive him, but why wasn't he held accountable; he even admitted fault. Where do I find a good neurologist? I'll drive there...after I get my car out of the ice. I can't dig out because I'm way too unstable to stay upright on the ice. Where do I find a PT who does counterstain? Okay, enough of this pitiful diatribe. I want to be able to come back here to tell you about all the things that are helping. Please forgive the rant. I hope you find healing and contentment. Time for me to watch my online church. Have a wonderful day.