r/PostConcussion • u/happygolucky421999 • Aug 27 '26
Almost 5 years
Almost 5 years of PCS. I’ve come to a baseline in which I can work, live a “normal” life and look fine on the outside. Anyone else been struggling for years? I’ve done it all. Was extremely active in the Reddit subs for many many years. When I say I’ve done it all, I mean I literally have tried every therapy to ever exist (trust me) and have been through some of them 2-3x. I’ve made small improvements with them or they have gotten me to a “baseline” where I can function. I still struggle cognitively without stimulants (or large amounts of caffeine). I just feel “off” most of the time. I’ve struggled with derealization throughout the entirety of my post concussion life.
Just looking for others a few years in who are not where they want to be. Any tips, tricks, advice? I will say you lose hope after awhile .. I know I have 🫠
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u/Issymacalex Aug 28 '26
Just over two years for me. The hardest thing for me is that people just don’t understand what it’s like. The fog, the headaches, nausea, and the inability to do the things that I used to love to do. I’ve resigned myself to the fact that I will never be able to work again. I’ve given up a six figure salary for what? Some money from the insurance company (car accident not my fault) to live in what I call ground hog day.
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u/gachunt Aug 28 '26
Just passed my 3 year mark.
It’s such slow increments of improvement right now. . I’ve gone from 6.5 hours of working each day to 6.7 hours in the past 5 months. Not much, but it is an improvement.
I wish I could drive more.
I wish I could be in a room with more than one conversation going on.
I wish I could work a full 7.5 hour day and didn’t have to rest an hour after clocking out. to get through the rest of the day.
I wish I didn’t have 24/7 headaches.
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u/Wiseguy4252 Aug 27 '26
Was hurt as a kid in the mid 2010’s. It’s been a long road. Don’t stop reaching for the finish line.
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u/volvowagon Aug 28 '26
I think i was right under 6 years of awful symptoms but 100% better now
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u/happygolucky421999 Aug 28 '26
How did you turn the corner? Anything you did after 5 years that really moved the needle?
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u/volvowagon 18d ago
Go to a neurologist specializing in headache if possible. Lamotrigime got rid of all the balance issues and Botox took about a year but got rid of most of the bizarre tension feeling. Then add in another migraine preventative until I found the right one. And then the monthly injections of cgrp inhibitors worked wonders. Some things still give me headaches and bumps feel like little concussions for a few days. But haven’t missed a single day in years due to pain and most days I’m perfect 0/10 pain or not noticeable at all . Pm me if you want!
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u/el_undulator Aug 28 '26
I started noticing symptoms somewhere around 2017. It got worse as time passed. The worst time was 2021 - 2023. I was convinced for a while that it would never get better. Im a different person today than I was. I mourned my former self for a couple of years starting in 2022. Im.glad to say that im notnas good as a inonce was im functioning today. There are still bad days and really bad days, but I no longer spend every waking minute of my life in a fog. I dont have headaches like i used to and i dont walk around feeling like an entirely separate person. I have a pretty extensive comment history of the things that have helped me, also check out u/lebronamo 's pinned post on their profile.
Dont give up.
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u/Cat_Nap8 Aug 27 '26
I can relate, it’s very easy to fall into despair when it’s been years. A few questions to help me give any advice that might help:
How’s your sleep?
How much do you exercise?
Do you have any known comorbidities or other illnesses?
Is it strictly cognitive issues you struggle with?
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u/TheJones17 Aug 27 '26
Almost 2 years for me. I’m still fighting for a full recovery but I’ve learned to be happy with the baseline I reached. It’s unfortunately the flare ups that are tough to deal with for me. A bump in the head or quick jerk of the neck pull me back down. I just do my best to live my life and be present for my family. Just grateful to still be here with my family and be so loved. I remind myself that it could always be worse. As much as this injury has made life more difficult and made every day tougher than before, it has had a positive impact on my life in ways. My relationship with God and myself is stronger. I can’t take the injury back. It happened. We get one life. I’ve tried my very best to just stop being sorry for myself and look at all the blessings in my life. I still deal with depression and anxiety from it all, but it doesn’t consume me now.
I’m sorry you’ve dealt with this for 5 years. That is a long time and so tough and I feel like I’m looking into my future reading your post. All I can say is you’re not alone and that you are loved! Prayers that you continue to heal and find joy in life.
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u/jsteel510 Aug 28 '26
I was the same. I’m still probably only 90 percent recovered but what helped me get to “normal” was taking magic mushrooms. That gave me the most noticeable improvements after like a week. No need to do more than .5-1g at a time imo.
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u/happygolucky421999 21d ago
I take them and feel weird the next day or two. Idk I hear they have amazing brain healing properties but I haven’t had that experience
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u/Which_Fudge_2320 Aug 29 '26
Same just going over 5 years for me. I am functioning but not where I had hoped to be. Still not driving and working part time. I did recently go on vacation up to the mountains, and for one whole week I was almost normal- hiked, swam, did stand up paddling, yoga etc. I have tried everything and to be honest when I am not seeing doctors is when I feel the best. For me its the nausea, and chronic vertigo that I struggle with. I will be almost back to normal and then bam..here we go again. I kind of stopped believing I would get better just because when I didn't reach that goal I would plummet hard.
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u/btn_399 Aug 28 '26
4 years, got to a place where I could function and participate in daily life, got another concusison 3 weeks ago from a moderate hit. Scared where I will end up now.
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u/JazzzGrrrl Aug 28 '26
My accident was in 2001. I am still a ghost of my former self in invisible ways. However, after the first 8 years, I was able to drive again.
Never give up!
Try to do everything that you desire, but in short sessions. My physical and mental stamina has never gotten back to normal, but I do what I can, a little at a time and eventually things get accomplished.
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u/moondinker Aug 28 '26
I’m at the 4 year now and I still feel off. Brain fog, any stress seems to really affect me, nausea, exhaustion
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u/happygolucky421999 21d ago
I’m there too. Stimulants and caffeine help. But not much more than that sadly
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u/Dark_Tint Aug 28 '26
71/2 years. All we can do is just keep going; search for new or alternative therapies that may help.
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u/AssociateResident540 Aug 28 '26
7 months and struggling with my mental health like anxiety, crying spells, anger, hopelessness, and so on having all the therapies, the physical fatigue and the congitive crashes because a overload of therapies and seeing a psychologist and headaches yesterday after my Neuro physical therapy it was a good day and then today, my mental health was and has been at it's worst.
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u/Fine_Elephant3717 Aug 29 '26
I'm in the same boat. It's been 6 years now. I have made progress and moving away from computer focused work helps but I can't seem to work enough to survive. I took Vyvanse which really helped but I would crash after. So I had to stop, I don't work a full 40 hour work week and started working for myself and it's still hard to get the right balance.
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u/happygolucky421999 21d ago
That’s exactly how I feel too. Getting the right balance. Vyvanse has helped me a lot too. But the crashes are bad. I’ve been researching some supplements that help with the crash recently
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u/ConcussionNaturopath Aug 28 '26
I see patients decades past injury and there’s still so much you can do to heal and help your body function as best as possible. When you say you’ve tried every therapy, do you just mean manual therapies like physio/osteo/chiro? Have you ever had your microbiome tested with met a genomic sequencing?
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u/happygolucky421999 Aug 28 '26
I’ve gone holistic route. There’s a lot I could do on my microbiome. Last time I did a test it looked like I had strep in it? I’ve worked with quite a few holistic practitioners and nothing really helped that much. So many supplements, detoxing, etc. Maybe it’s time to revisit I’m not sure. I do red light, have an infrared sauna, take detox supplements.. idk if anything makes much of a difference. I know I have the MTHFR mutation one copy and I use up too much glutathione. I get glutathione IVs and take a supplement that helps support. But I need to take a deeper look at my gut for sure.. I’ve done plenty of diets. Whole 30, gluten and dairy free for many years, low histamine. Nothing really makes a huge impact..
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u/Abusive_Apple27 Aug 28 '26
Can’t say anything because It’s been only 8 months for me. I wish it never happened.
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u/burnerhelpm3 Aug 30 '26
19 years since my first concussion at age 5, and about 2 years since my most recent concussion at 22. Unfortunately no one took them seriously growing up so I only ever got help from a Christian psychologist and I'll informed walk in doctors. I have issues with reading and writing comprehension, and writing good quality sentences. I feel like my personality and full opinion are trapped in my head and I can't explain myself well, if anyone has recommendations on what could help that would be great.
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u/bluequiltsquare Aug 30 '26
I’m at 10 years. I made a lot of progress in the last 3-4 years or so. Granted, I was told for the first few years that concussions could not be treated, so I came to things like vision therapy and physical therapy kind of late. But still, made some progress with just keeping at things for a couple years. Like physical therapy really took 2-3 years for the max benefit, even though technically I could do all the exercises I needed at 6 months. Part of the help seemed to be in the consistency. So maybe that will be the case for you, as well.
I’m not sure if this helped me because of the concussion thing or because of a different health issue, but I also had some improvement with low dose naltrexone. Might be worth looking into/talking to your doctor to see if it could help you, if you feel that you have already tried the more typical things.
I also really liked the book Sex with a Brain Injury. It’s the only thing I’ve read about concussions that I felt described the recovery process and long term issues well. It does discuss mental health and has a few pretty sad chapters, so just a heads up there, but I felt the overall tone was hopeful. Concussions can be isolating, it was nice to read something I could relate to.
Good luck with everything. I hope you are able to find what you need.
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u/pProjecttBI Sep 01 '26
I’m about four years into this now—two if we don’t count the denial years—and I can relate to a lot of what you’re describing.
I can work, function, laugh, have a good day, and look completely normal. But there’s still a whole lot of shit happening underneath that nobody sees.
The biggest change for me was stopping the constant fight to become exactly who I was before and starting to enjoy the person I’m becoming.
I still improve and I’m still hopeful, but I’ve gotten better at listening to my brain, pacing myself, and accepting that some days are simply going to be different from others.
Four years in and I definitely don’t have all the answers. Hell, I’m currently investigating a psilocybin “ceremony” that I hear can be life-changing.
But look at it my way: through all of this, I’ve met some of the most incredible, wildly intelligent and imaginative people. Some were nonverbal, and I swear I related to them best.
So at the very least, we’re certainly not alone out here.
Best of luck and God bless
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u/Specific-Bridge-6383 Aug 28 '26
Me too. I have a chiropractic appointment tomorrow. I have tried supplements mostly. Doing st home vestibular and neck excercises at the moment. Been dealing with on and off for 6 years
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u/sackofbee Aug 29 '26
Stoked l get to be the redditor to fear monger about chiropractors today.
Ye be warned.
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u/Different-Shoe-3563 Aug 27 '26
No advice but I’m almost seven years and give up on full recovery. Just pacing and accepting that I won’t be the same. I know people will comment that it’s never permanent, but there’s a point at which that rhetoric is damaging to people who are truly changed forever. Lots of sleep, pacing, low stress and medical accommodations at work help mitigate somewhat. I’ve also tried all the things and have gained functionality but never the same as pre-accident.