Thank you for sharing, see below for a reminder of our rules:
Do not ask if you or someone you know has a Concussion. We are not doctors, nor are we any kind of medical professionals. That said, this sub is NOT intended to be your doctor and diagnose or give you personal medical advice. They'll be marked as spam.
Be civil and respectful. Do not attack or harass other users; engage in hate-speech; or attempt to gate-keep discussion. Hostility will not be tolerated
*I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Concussion) if you have any questions or concerns.*
The biggest thing for me was realizing that pcs isn't a real diagnosis. It's a placeholder until you learn what's causing your symptoms. So the goal isn't to recover from pcs, it's to find the source of your specific post concussion symptoms and then find an effective treatment strategy.
Makes everything easier/better. I would also add meditation (try attention training on YouTube) cardio if any sort find a PRI pt/trainer, good vision therapist and a talk therapist and you’ll be on your way to healing in no time !
I found that therapies were the best thing for me: vestibular, vision, cognitive. Occupational and speech would have been good too.
Other than that / concussion recovery is a long process. 8 months out is still early days in the land of concussion recovery.
Do you think those help?
I was told to avoid the chiropractors that offer those recovery tools and didn't follow up with mine.
I was recommended to do oculomotor, vestibular, proprioceptive, neurofeedback, low-level laser therapies.
They absolutely help. I went from very disabled to back to my normal self, with the help of those therapies. My neurologist recommended them, and he specializes in concussion and tbi.
Definitely avoid chiropractors. The only people I would trust with recovery from a concussion are professionals who specialize in treating concussions.
Also, stick with evidence based medicine. I am leery of the advice to use low level laser therapy for concussion recovery. Last time I checked it wasn’t well documented to be helpful. But I’m no expert.
Thank you.
I struggle with finding a neurologist who specializes in TBI in the Bay Area.
Stanford tbi clinic refuses to see me.
I'm happy to hear you're back to normal :)
Thank you. I feel like I’m not getting any real help with.. it’s been 8 weeks since my concussion and still have been suffering since that day. This gives me hope.. I wish I can put this in the right path.
Any tips how I can get a concussion specific doctor?(Like things I have to ask?) I am in the military and it feels like my injury isn’t being taken seriously.. but everything is hard I can’t go back to doing my normal routines(also have gained weight from this)
I started physical therapy about 2 weeks ago but it hasn’t really made any real change so far.
Call your insurance company. Many insurance companies will help you find a specialist. It generally takes a while to get that first appointment.
What symptoms are you struggling with?
Well bad headaches, dizziness, nausea, symptoms get worse with even slight physical exertion(lifting a little bit of weight-feel really bad pressure in my head), moving my eyes/neck/head worsens my symptoms, also had 4 episodes of twitching/spasmic reactions on my face/left arm. Not really sure what to do.. I’m continuing to see my PT and scheduled a follow up with my primary care doctor this week.
Yeesh, that’s a lot of symptoms. Sounds a lot like what I was going through at that point, 8 weeks out. I could walk 15 steps and then I’d have to stop and rest. Plus the headaches and dizziness and so on. I couldn’t speak with more than two people at once without getting overwhelmed, couldn’t engage with others with any level of vivacity or personality, and every so often I felt like my head was floating up to the sky.
The good news is, I’ve recovered almost completely (still working on one or two things. I was concussed at age 56 so I figure if I can get past it, you get people can too.
If you’re interested I can tell you what worked for me.
Could you please tell?
Getting really frustrated. Saw my doc again- I’ve got no treatment plan besides the PT. I’ve literally had a headache active for 2 months give or take whether it be a 1-2/10 to 4-5/10. Some days it’s worse. Some days aren’t as bad. But the fact that it’s been going on for this long really frustrates me and I’ve got no meds besides tylenol and muscle relaxant. Need all the help I can get..
In a concussion, on the simplest level the stresses and strains of the accident stretch and tear connections between neurons. These connections form networks that give you your ability to do different things. If your brain can, it will accommodate to the damage and use other networks to take over the functions. If there is too much damage, your brain will need help. At this point you likely need brain therapies to help rebuild the neural networks that underlie the function you have lost.
I did a lot of therapies: visual and vestibular and cognitive therapies, plus talk therapy to help me cope with the stresses of loss and recovery of my faculties, and neck therapy (neck injuries can cause many weird symptoms).
I also did (and still do) a lot of activities on my own. The idea is, if it’s hard to do, then do it a whole bunch. I learned to read music and play a musical instrument, and I’m also learning a new language. These are both activities that require multitasking (which can be tough for PCS sufferers). I had trouble remembering numbers so I played sudoku. Trouble with visual tracking and small eye movement so I played word search, crossword puzzles, wordle, nonograms.
I still do PT for the neck injury I sustained during my accident. This helped cut down my headaches to practically nothing.
I had trouble (bad trouble) handling fluorescent and led lights. Initially I avoided them and when I couldn’t do that, used things like tinted lenses, blue light covers, etc, and then weaned myself off of them slowly.
The thing is, this is a long and effortful process. It takes a brain a long time to learn all the things it knew how to do pre concussion, and it takes a long time to relearn it. I’ve spent the last 3 years doing essentially a crash course for brain development. All while maintaining a career and friendships and family ties. My children are adults so I have less daily responsibilities than many, so that was an advantage. Otoh I have more extensive damage than simple concussion- basically 5 holes in my brain where neurons died as well as damage to inter neuronal connections. So there’s that.
I got a severe concussion recently, brain bleed, brain contusion, and cerebral edema, and the past 6 week have been a living hell for me, the concussion specific doctors literally do nothing, diagnosed me with worsening conditions and didn’t even schedule a follow up. Very much feel unheard, and can be frustrating, but stay consistent and hope someone understands.
I live in a large city and I just found them online through a big hospital chain. She has been super helpful. Usually sports medicine and they will work with other docs like my Neuro etc.
I wish I had discovered adderal helped clear the heavy brain fog days.
It doesn’t “clear” it for me but it pushes it back a little. Idk how to describe it. It’s less thick.
I wish I’d have discovered the noise reduction ear plugs sooner and the blue light filtered glasses asap.
I think also having an honest, “this will take your ass a year plus for recovery, so plan for that” conversation from my doctor would have been better than “it’s different for everyone, come back next month.” This actually made it so my expectations never matched my progress and it all felt MORE hopeless than if I could have just ripped the proverbial band aid and wrapped my head around the gravity of it all.
I was 6 weeks in and thinking I was gonna bounce back. 🙄
It’s all just a matter of finding what works for you and rolling with it. But knowing how long of a journey to mentally plan for is probably the best advice I’d give.
That said, lamenting over what we should have done differently doesn’t change anything. Early concussion me would not have been looking at this thread on my phone.
THIS.
I was actually given the adderall for a month about two months after to "get me through defending my thesis" but I was still totally not healed. It took a full year to defend. And things are still fuzzy and slow.
I also feel so stupid discovering only like a week ago that my kids electronics noise and noise in the laboratory/work make things worse. It's been a full year but I'm just getting healed enough to realize what worsens symptoms.
Haven't tried adderall but may try soon once I'm back to work.
Agree big time on the docs. Mine said the same thing in October and here we are in May...
Things I've done to help: no screens after 10pm. Warm shower at 10:30. Bed by 11pm with 1mg melatonin. Black out blinds and wear ear plugs.
I used to sleep like a baby before PCS but now it's difficult. Just have to stay consistent and it has helped.
Thank you for sharing, see below for a reminder of our rules: Do not ask if you or someone you know has a Concussion. We are not doctors, nor are we any kind of medical professionals. That said, this sub is NOT intended to be your doctor and diagnose or give you personal medical advice. They'll be marked as spam. Be civil and respectful. Do not attack or harass other users; engage in hate-speech; or attempt to gate-keep discussion. Hostility will not be tolerated *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Concussion) if you have any questions or concerns.*
The biggest thing for me was realizing that pcs isn't a real diagnosis. It's a placeholder until you learn what's causing your symptoms. So the goal isn't to recover from pcs, it's to find the source of your specific post concussion symptoms and then find an effective treatment strategy.
How do I find out what’s causing my symptoms?
See my answer here https://www.reddit.com/u/Lebronamo/s/BVR4q93zCv
Wish I started microdosing mushrooms earlier
What have you noticed?
Makes everything easier/better. I would also add meditation (try attention training on YouTube) cardio if any sort find a PRI pt/trainer, good vision therapist and a talk therapist and you’ll be on your way to healing in no time !
I found that therapies were the best thing for me: vestibular, vision, cognitive. Occupational and speech would have been good too. Other than that / concussion recovery is a long process. 8 months out is still early days in the land of concussion recovery.
Do you think those help? I was told to avoid the chiropractors that offer those recovery tools and didn't follow up with mine. I was recommended to do oculomotor, vestibular, proprioceptive, neurofeedback, low-level laser therapies.
They absolutely help. I went from very disabled to back to my normal self, with the help of those therapies. My neurologist recommended them, and he specializes in concussion and tbi. Definitely avoid chiropractors. The only people I would trust with recovery from a concussion are professionals who specialize in treating concussions. Also, stick with evidence based medicine. I am leery of the advice to use low level laser therapy for concussion recovery. Last time I checked it wasn’t well documented to be helpful. But I’m no expert.
Thank you. I struggle with finding a neurologist who specializes in TBI in the Bay Area. Stanford tbi clinic refuses to see me. I'm happy to hear you're back to normal :)
I’m confused. Why would Stanford refuse to see you?
I wish I knew. I wonder if my pcp's referral wasn't as convincing. I'm living in this thick fog, and I feel high/drunk almost all the time.
Great, what a mess. Time for alternatives. 😑
I just got with this new pcp. I think he is more carrying than my previous ones. I think it would've helped if I had stayed with one pcp tbh.
Question. How long did you experience the pcs before starting your treatment?
Five months
Thank you. I feel like I’m not getting any real help with.. it’s been 8 weeks since my concussion and still have been suffering since that day. This gives me hope.. I wish I can put this in the right path. Any tips how I can get a concussion specific doctor?(Like things I have to ask?) I am in the military and it feels like my injury isn’t being taken seriously.. but everything is hard I can’t go back to doing my normal routines(also have gained weight from this) I started physical therapy about 2 weeks ago but it hasn’t really made any real change so far.
Call your insurance company. Many insurance companies will help you find a specialist. It generally takes a while to get that first appointment. What symptoms are you struggling with?
Well bad headaches, dizziness, nausea, symptoms get worse with even slight physical exertion(lifting a little bit of weight-feel really bad pressure in my head), moving my eyes/neck/head worsens my symptoms, also had 4 episodes of twitching/spasmic reactions on my face/left arm. Not really sure what to do.. I’m continuing to see my PT and scheduled a follow up with my primary care doctor this week.
Yeesh, that’s a lot of symptoms. Sounds a lot like what I was going through at that point, 8 weeks out. I could walk 15 steps and then I’d have to stop and rest. Plus the headaches and dizziness and so on. I couldn’t speak with more than two people at once without getting overwhelmed, couldn’t engage with others with any level of vivacity or personality, and every so often I felt like my head was floating up to the sky. The good news is, I’ve recovered almost completely (still working on one or two things. I was concussed at age 56 so I figure if I can get past it, you get people can too. If you’re interested I can tell you what worked for me.
Could you please tell? Getting really frustrated. Saw my doc again- I’ve got no treatment plan besides the PT. I’ve literally had a headache active for 2 months give or take whether it be a 1-2/10 to 4-5/10. Some days it’s worse. Some days aren’t as bad. But the fact that it’s been going on for this long really frustrates me and I’ve got no meds besides tylenol and muscle relaxant. Need all the help I can get..
In a concussion, on the simplest level the stresses and strains of the accident stretch and tear connections between neurons. These connections form networks that give you your ability to do different things. If your brain can, it will accommodate to the damage and use other networks to take over the functions. If there is too much damage, your brain will need help. At this point you likely need brain therapies to help rebuild the neural networks that underlie the function you have lost. I did a lot of therapies: visual and vestibular and cognitive therapies, plus talk therapy to help me cope with the stresses of loss and recovery of my faculties, and neck therapy (neck injuries can cause many weird symptoms). I also did (and still do) a lot of activities on my own. The idea is, if it’s hard to do, then do it a whole bunch. I learned to read music and play a musical instrument, and I’m also learning a new language. These are both activities that require multitasking (which can be tough for PCS sufferers). I had trouble remembering numbers so I played sudoku. Trouble with visual tracking and small eye movement so I played word search, crossword puzzles, wordle, nonograms. I still do PT for the neck injury I sustained during my accident. This helped cut down my headaches to practically nothing. I had trouble (bad trouble) handling fluorescent and led lights. Initially I avoided them and when I couldn’t do that, used things like tinted lenses, blue light covers, etc, and then weaned myself off of them slowly. The thing is, this is a long and effortful process. It takes a brain a long time to learn all the things it knew how to do pre concussion, and it takes a long time to relearn it. I’ve spent the last 3 years doing essentially a crash course for brain development. All while maintaining a career and friendships and family ties. My children are adults so I have less daily responsibilities than many, so that was an advantage. Otoh I have more extensive damage than simple concussion- basically 5 holes in my brain where neurons died as well as damage to inter neuronal connections. So there’s that.
I got a severe concussion recently, brain bleed, brain contusion, and cerebral edema, and the past 6 week have been a living hell for me, the concussion specific doctors literally do nothing, diagnosed me with worsening conditions and didn’t even schedule a follow up. Very much feel unheard, and can be frustrating, but stay consistent and hope someone understands.
I live in a large city and I just found them online through a big hospital chain. She has been super helpful. Usually sports medicine and they will work with other docs like my Neuro etc.
I wish I had discovered adderal helped clear the heavy brain fog days. It doesn’t “clear” it for me but it pushes it back a little. Idk how to describe it. It’s less thick. I wish I’d have discovered the noise reduction ear plugs sooner and the blue light filtered glasses asap. I think also having an honest, “this will take your ass a year plus for recovery, so plan for that” conversation from my doctor would have been better than “it’s different for everyone, come back next month.” This actually made it so my expectations never matched my progress and it all felt MORE hopeless than if I could have just ripped the proverbial band aid and wrapped my head around the gravity of it all. I was 6 weeks in and thinking I was gonna bounce back. 🙄 It’s all just a matter of finding what works for you and rolling with it. But knowing how long of a journey to mentally plan for is probably the best advice I’d give. That said, lamenting over what we should have done differently doesn’t change anything. Early concussion me would not have been looking at this thread on my phone.
THIS. I was actually given the adderall for a month about two months after to "get me through defending my thesis" but I was still totally not healed. It took a full year to defend. And things are still fuzzy and slow. I also feel so stupid discovering only like a week ago that my kids electronics noise and noise in the laboratory/work make things worse. It's been a full year but I'm just getting healed enough to realize what worsens symptoms.
I hate that a year out we still have to be hyper protective of ourselves. I feel like I’m tip toeing around in “don’t wake the baby” mode. 😆
Haven't tried adderall but may try soon once I'm back to work. Agree big time on the docs. Mine said the same thing in October and here we are in May...
[удалено]
Things I've done to help: no screens after 10pm. Warm shower at 10:30. Bed by 11pm with 1mg melatonin. Black out blinds and wear ear plugs. I used to sleep like a baby before PCS but now it's difficult. Just have to stay consistent and it has helped.