How to Tackle Post Traumatic Brain Injury Syndrome
“Post-traumatic brain injury syndrome” refers to long-term repercussions from concussions and other head injuries. Someone using this term could be referring to one of three conditions:
Post-concussion syndrome is downright frustrating to experience. Doctors often miss it during diagnosis, and even if they do make the diagnosis, treatment methods vary considerably from clinic to clinic. What works for some doesn’t work for others.
It leads many to research their condition online, seeking community and advice on Reddit from fellow post-concussion syndrome sufferers. While Reddit can be a helpful place to learn about others’ experiences of post-concussion syndrome, there are hidden downsides as well. For example, the sheer amount of differing opinions and options can be overwhelming if you’re already suffering from cognitive symptoms like brain fog, noise sensitivity, or difficulty reading.
But, how reliable is the advice you find on Reddit? In many cases, you’ll find good advice; in others, not so much. In this article, we break down real advice and stories from Redditors to help you discern between helpful and unhelpful information.
Just remember that, as difficult as the PCS journey can be, advice from folks on the internet can’t replace having a trained medical professional evaluate you and make recommendations specific to your situation. That said, make sure you find a specialist in post-concussion syndrome treatment. (For example, you can speak to our team to discuss treatment options and recommended next steps).
In this article, we’ll cover:
Cognitive FX specializes in post-concussion syndrome treatment. Over 90% of our patients experience symptom improvement after just one week. To see if you are eligible for treatment, sign up for a consultation.
Reddit boasts 420 million users and receives more traffic than Amazon, with over 1 billion monthly unique visitors. The platform encourages users (known as Redditors) to interact with each other and share their experiences on a particular topic.
If you’re experiencing PCS, you may have already found one subreddit dedicated to Post-concussion Syndrome (PCS). This subreddit covers anything from ways to cope with different symptoms and what to do with a neck injury to advice on when to return to work and when to see a concussion specialist. It can be a valuable source of information. Just remember that searching through Reddit threads should not replace seeking medical advice from a neurologist and other healthcare providers.
Not surprisingly, Reddit has some positives and some downsides for PCS patients. We’ll cover some of the most common, including — as much as possible — real examples from Reddit.
Reddit can help PCS patients in many different ways, from providing advice on how to cope with different symptoms to simply finding other patients going through a similar situation.
Some of the positive aspects of Reddit include:
There are many medical subreddits available where Redditors can ask medical questions about different conditions, including head injuries and post-concussion syndrome.
These subreddits tend to be large communities of doctors and patients. It doesn’t have the feel of a community, but it may give you a better chance of finding a healthcare professional with experience dealing with PCS patients, such as a physio (if you need physical therapy) or a neuro-optometrist (if you need vision therapy).
Especially in the large subreddits moderated by doctors, incorrect comments are quickly removed from the site. Because of this, Reddit is the social media where you’re most likely to find accurate information.
Some of the most popular medical subreddits include:
Redditors give each other upvotes and downvotes, which means that when you’re searching for ways to deal with a specific symptom, you are more likely to see what other readers have liked. In most instances, blatantly false or incorrect advice is quickly removed from the subreddit, leaving only comments that contain at least some form of good advice, even if sometimes they lack vital information.
Here’s an example of a post asking for help:
Over a year ago I suffered a series of severe concussions over the course of a couple of months (sledding initially with a couple accidents in the following months). Since the last injury (late april 2021) I’ve struggled with intensifying symptoms; brain fog, headaches, nausea, insomnia, cognitive deficits, severe increases in my sensitivity to any stimuli, as well as accompanying psychological problems; depression, anxiety, PTSD among them. These psychological problems have become so severe that there is crippling anxiety surrounding everything I do, especially things that involve anything touching my head (putting on shirts, washing my hair, sleeping with my head on a pillow, etc). I took a leave of absence from school/work, and while I intended for this to be short-term, my condition has only degenerated. Initially my symptoms were distressing, however I was still able to do things like take walks, go to movies, enjoy social engagements and recreational activities, etc without much trouble. However with each time a more intense spike in my symptoms occurred (caused by things like physical overexertion, extensive loud noise, dental work, other similar minor events), my baseline has subsequently gotten worse, and with it my sensitivity to such triggers. At this point I’m unable to do much of anything besides sit in a quiet dark space if I don’t want to experience increases in symptoms. The burden of my lived experience is heavy, it seems that I’m so far from the person I was, it feels more and more that the life I lead is not worth living. I want to do everything in my power to change that.
I’ve tried vestibular therapy (which helped initially but I’ve become too sensitive for), pharmaceutical options (gabapentin for pain/sleep, a few antidepressants (no longer taking), most recently a low dose of adderall for help with focus, biofeedback (not really sure if it helped), various alternative medicines, behavioral therapies (notably EMDR therapy which also was too triggering), diets, and more. I wear noise canceling earbuds nearly everywhere to safely move about. My doctors have been unable to give me clear treatment plans/paths forward, at this point just doubling down on increasing pharmaceuticals and “time is the best medicine”. I’m currently working to see other TBI specialists and therapists, but ultimately still feel lost. If you’re still reading, I’m humbly asking for any sort of suggestions for treatment options, things that worked for you, studies/research on this subject you think would be pertinent, anything at all. This is an incredibly difficult thing to go through, so to everyone experiencing PCS to any degree, I wish you recovery and relief whatever that may look like. Thank you for any help you can give.
This kind of desperation in looking for the right treatment is not unusual with PCS patients. In this case, the original poster (OP) tried multiple therapies, meds, and lifestyle changes. Despite them all, the OP still experienced worsening concussion symptoms. We see many patients in this situation at our clinic, Cognitive FX. The problem is often that the doctors they see treat PCS as a collection of symptoms to be treated individually rather than a condition that needs to be considered as a whole.
Here’s one of the responses in the Reddit thread:
So it’s important to note that you have Post concussion syndrome - presumably, your symptoms could be caused by whiplash or other things so verify that if you haven’t.
With PCS your brain has ALREADY HEALED. YOU DO NOT HAVE BRAIN DAMAGE. PCS is when your brain healed itself WRONG. The “highway” in your brain was fixed but the new route is less efficient, and so you get headaches and nausea and so forth. Because your brain is straining itself way more to do the same work. Luckily, our brains are amazing. It can completely reroute itself as needed and is constantly doing so. All it needs is stimuli.
Your goal with post concussion syndrome is to push your symptoms (within a safe extent) and literally just allow your brain to adapt to your life again. At this point sheltering your brain will not do you any good and will actively harm recovery.
Also, I STRONGLY recommend visiting a concussion clinic, sports medicine clinic if you haven’t already. The resources they offer can often be the difference between a permanent injury and a full recovery.
These comments are generally heading in the right direction. The advice to check for whiplash is sound. In addition, continuing to isolate and avoid everything that may trigger symptoms only reinforces the brain's bad habits and slows down recovery, so that’s good advice, too.
What the advice lacks is a safe way to achieve this. At Cognitive FX, we teach our patients to follow the “rule of three.” This is a safe way for patients to know when they can push themselves and when to take a break.
We’ve explained this and other methods that patients can follow during their recovery in another article: Why taking brain breaks is good for you.
IAmSoloz’s comments end on a positive note, advising the original poster (OP) to seek specialized medical care. We would go a little further and suggest that the OP needs to look for a clinic specialized in post-concussion syndrome, like Cognitive FX, and not just any sports clinic. Acute concussion recovery and PCS recovery require different treatment approaches, so not everyone who can treat a concussion that happened a couple of days ago can treat long-term PCS symptoms successfully.
Reddit is also a good place for patients to “swap” stories. Maybe you’re not looking for specialized medical advice about post-concussion syndrome; maybe you just want to find other patients who have undergone what you’re going through now.
Reddit is the perfect place to ask practical questions about how other patients cope with their daily activities. What triggers their symptoms and how do they avoid them? Do you need to limit screen time? How did they decide it was the right time to go back to work? How frequently do they exercise?
The advice may not always suit you but, at the very least, it’s comforting to know that there are other patients out there who have experienced PCS and found ways to cope with their symptoms. One example is the “conversation” between Helpful_Mushroon_243 and redeux.
Those who beat Fatigue ?
I'm 14 months post concussion and my biggest issue still remains severe fatigue. Are there those who had really bad fatigue even after 1 year but eventually beat it / it went away? How did you do it and how long did it take ?
Best things that helped me were: getting lots of rest (more than I thought I needed), drinking lots of water, and making sure I was eating enough, listening to my body and resting when I felt myself getting tired. Last but not least, it took me time. I had PCS for 4 years. Some symptoms lasted longer than others. I think my fatigue fell off after 18-24 months.
Thanks for sharing this. What did rest look like for you? I'm often confused about how to rest. Did you lie down and take naps when tired ? Or just lie down a few times a day ? Or sit in a dark quiet room etc
At night I slept longer than I thought I needed to. I used to get 5-6 hours of sleep and started doing 8-9 after my concussion. If I was doing something strenuous or just walking about and felt like I was getting tired, I'd just sit down and relax. Sometimes naps if I thought it wouldn't throw off my sleep schedule at night. I also had a lot of visual and sensory issues, and my relief from those was usually laying down in a dark room.
In this case, redeux’s advice about resting is good, including making sure to keep daytime naps to a minimum. At Cognitive FX, we recommend mindfulness meditation or listening to “brain waves” while relaxing to help your brain unwind more completely.
Let’s say you’re looking for treatment for your post-traumatic headaches. Maybe you’re choosing between medication or therapy. You’ve tried to Google the best options for you, but can’t find what you need.
This is where Reddit can shine. Whatever you’re looking for, there’s probably a subreddit covering the topic with all the information you need to make a decision. Someone, somewhere in the world, has faced the same problem and weighed the pros and cons before making their decision. Those deliberations can help you make your own decision.
For example, RiverOfNexus got some great advice on handling post-workout dizziness:
Dizziness After Working Out
So I had a concussion in Dec 2019. It's been almost 5 months since then and I've lost all my muscle mass. I tried doing 10 very slow push ups and I felt the burn. I stopped and now 5 hours later I'm getting 4-5 out of 10 dizziness. Should I do the push ups again tomorrow or stop? How do I know whether to push myself or stop?
After a workout, your symptoms should only increase by a couple points on the scale at most if it's safe for you to do. I pushed myself through a lot of the minor discomforts but 4-5 on the dizziness scale sounds pretty bad. I think you should get a heart rate monitor and see where you can raise your heart rate without feeling too bad. Then, gradually increase that number every day. You might also be having trouble with raising your heart rate and letting it fall multiple times in a short period of time - this is a different mechanism in your brain than raising your heart rate and letting it stay there for several minutes.
I had exercise intolerance which I fixed through over a month and a half of working slowly. At first, I could barely walk 5 minutes on a treadmill, which turned into 7 minutes, then 10, then light jogging, etc. Now, everyday I can do 15 minutes of body weight interval training (which I will soon graduate into dumbbell training) and a 20 minute run later in the day. Honestly, it's worth taking it slow because so many of my symptoms are gone now that I have more energy from working out. Getting a heart rate monitor will be your first step to getting back to exercise.
After working out, when your brain has a lot of blood flowing to it, do some visual/vestibular therapy. Seriously, I do two sessions of therapy a day by myself after my workouts, and my dizziness and eye issues are almost gone now.
A gradual increase in level and intensity is also what our therapists at Cognitive FX recommend (though we use brief intervals of intense cardio when we work with patients in the clinic, as this provides the greatest benefit to our patients). This approach, called sub-symptom threshold aerobic exercise, is when patients exercise enough to raise their heart rate and promote healthier blood flow in the brain, but not so much that it triggers multiple symptoms.
Therapy immediately after exercise is another excellent suggestion. This is why we treat PCS patients with exercise followed by multidisciplinary therapies: In addition to helping blood flow in the brain, aerobic exercise also triggers the release of a chemical in the brain called BDNF. This chemical stimulates the growth of new nerve cells and boosts the effects of subsequent therapy.
One other benefit patients can get from Reddit is a sense of community. Especially when subreddits are small, patients can interact with a group of like-minded people working through the same issues. These subreddits make it easy for patients to ask questions and share thoughts, opinions, and experiences with other Redditors from all over the world. For most patients, this kind of community would be difficult to find in their in-person circle of friends.
Take, for example, this OP who found encouragement and support from RedRobot2000.
Hi all! I'm new here. I am a 29 year old woman. I was on my way to work one day in June, and driving through the intersection by my apartment when someone ran the stop sign and t-boned my vehicle. My head smashed off the driver's side window on the left side.
I wondered if anyone else has experienced a stubborn migraine that refuses to go away after their concussion? I'll have moments with reduced pain and migraine symptoms but it is never completely gone. There is always some lingering pain and brain fog.
I've always been forgetful but post concussion it is 10,000 times worse. Things will just disappear entirely from my memory, when before I'd forget about them but remember the initial discussion when reminded or within a short period of time.
Also, before concussion I was timid and had difficulty standing up for myself. Now I find myself being snappy when annoyed (and getting annoyed a little to easily), having 0 issue telling someone when they are being an asshole, and additionally having less of an emotional reaction when someone is being cruel (or my mother is in one of her favorite guilt trips) and more just telling them they suck and not reacting.
I'm also an adult with ADHD and I've noticed that since the concussion that my ADHD related symptoms have significantly worsened.
Hello. Sorry to hear what you're going through. I have had post-concussion syndrome for over 2.5 years now, so I can relate. I also have no relief from severe migraines. I am fortunate enough to have tried many different medications and nerve blocks, but none have worked yet. I am currently trying Epival and if it works I will let you know. My concussion has also changed my personality. Unfortunately, brain injuries don't make people happier or more pleasant people. I understand your frustrations and I'm glad you reached out to people that are in similar situations. I truly hope you start feeling better soon. Continue to reach out, you're not alone.
Thank you. People keep telling me that post concussion syndrome only lasts 3 months to a year but I also have friends that know others with similar injuries where it has been years and they still have personality changes and issues that affect them every day. I do fairly okay getting through the day a lot of the time, but then there are the days I'm in tears saying I just want my brain back. I find it sometimes correlates with my stress levels too. This week is finals week in college and I've been having a lot of bad days lately.
While the response didn’t include practical solutions for the OP, it was still a positive interaction expressing support and encouragement. Many posters wish their fellow Redditors a genuine “good luck” as they seek solutions and community on their recovery journey.
Like any other social media, Reddit also has a few negative points, including:
The abundance of advice in Reddit comes with a problem: It may not be the most suited for your condition, or it may be downright incorrect. It doesn't matter if a particular Redditor’s story sounds exactly like what you went through, you may still have a completely different reason for your symptoms or require different treatment for the same problem. PCS affects patients in many different ways, which means that what worked for one patient may not work for another, even if symptoms are similar.
There are also occasions where Redditors offer outdated advice. Sometimes that’s because it was the kind of advice they received from their doctor. This is likely the case with Constant-Squirrel555’s response.
[background: 38F; slipped backwards and hit the back of my head on the sidewalk on Jan 28; did not black out or experience any of the symptoms that require emergency care. Went to medicentre feb 1 and had a cervical x-ray]
Maybe I'm just having a bad day. I know that symptoms can be delayed after the initial concussion, but I'm now on day 10 and my brain feels worse off.
I have moments of micro-dizziness, and felt off-balance a few times today; I didn't have balance issues previously, and the dizziness seems to be increasing over the last week. I am so incredibly tired. Everything is even more exhausting than it was last week. The tinnitus and pain below my ears hasn't improved at all. The neck pain/aches is the only thing that has somewhat improved, but it's still an issue. My cognitive functions seem a lot worse. I have a hard time reading anything, with finding the right words, with thinking in general.
I've had two minor concussions before (2011 and 2001) for which I did not have any medical assessment. Neither of these, however, had such a major impact on my functioning, and the main post-concussion symptoms that I experienced mostly went away in about a week. From what I've read, post-concussion syndrome seems to apply.
Has anyone else experienced this? Any recommendations to help in recovery?
Go to the doc asap. See if you might need a scan my friend. Aside from that, total rest in the darkness (but try not to sleep). I had every symptom you had after my latest concussion on December 27. You gotta go complete mellow mode and rest.
The advice to go to the doctor is good, but scans have limited value for PCS patients. CT or MRI scans cannot be used to detect post-concussion syndrome. These imaging scans detect structural damage to the brain (such as skull fractures, for example), but PCS doesn't stem from structural damage. Worryingly, many patients are led to believe they are fine because their scans are normal. Some are even told that their symptoms are “all in their head” just because there’s no physically visible damage.
At Cognitive FX, we know that is not true. Instead of relying on CT or structural MRI scans (although they are useful in certain situations), we offer our patients a functional MRI scan that helps us evaluate changes in the brain from post-concussion syndrome. This scan is called functional Neurocognitive Imaging (fNCI), and it provides detailed information about how different areas of the brain are functioning.
The reply also suggests total rest in darkness even though it’s been 10 days since the injury. This technique — called cocooning — is outdated advice. Instead, the Centers for Disease Control and Prevention (CDC) advises patients to rest for just 48 hours after their concussion (although not in total darkness), then gradually return to their normal activities after these couple of days. Further engaging in physical and cognitive therapies speeds up recovery.
As described earlier, reading Reddit threads should not replace visiting a professional healthcare professional and could be falsely reassuring or worrying. A real doctor needs to consider your situation, symptoms, medical history, and test results.
Medical advice is not like tech support to solve a problem with your phone. For some patients, Reddit is a useful platform to talk about the health problems they may not want to discuss with friends, but it should be seen as a support group and not as a replacement for medical assistance.
Reddit allows users to post anonymously. Because of this, some people may stretch the truth. Others may share all the worst aspects of their journey in gory detail. If they haven’t recovered the way they so longed to, their bitterness may show through. Some posts serve to demoralize more than to uplift the reader.
Take this post, for example:
This subreddit made my health anxiety 20x worse
I got a mild concussion last week and was feeling ok about it and following doctor's instructions, cautiously but not nervous. After reading people's posts on here I’m terrified to have a seizure or die or never recover. I really wish I never stumbled across this because I can’t go about my daily life now without worrying I’m going to have a seizure or something.
Anxiety and stress are more likely to worsen your symptoms than anything.
If this subreddit isn't helping you heal then simply stop coming here. Your mild concussion will likely heal just fine if you continue to listen to your doctor.
A lot of people with extreme anxiety post here. You also have to remember that people who heal nicely from a concussion probably don't seek out Reddit support groups so you're far more likely to see posts from people who had complications or really bad concussions. It's the same for most illness support groups. People who heal move on so you're left with a lot of worst case scenario patients posting.
That’s true. Sorry I know I should just not read these things. It just made me angry that I stressed myself out. And confused at how vastly different people's mild concussions can be. Uncertainty is very hard for me.
This isn’t to say these posters are doing so with an intent to harm (most probably mean well), but that doesn’t mean you shouldn’t exercise caution while reading. PCS threads are not for the faint of heart, and certainly not for folks who have a first-time concussion that seems to be progressing normally. If you feel like you’re easily influenced emotionally or may not be able to evaluate posts impartially, Reddit may not be the place for you. (In this case, we have a list of helpful resources below that you can use instead).
If you’re trying to read through hundreds of threads dedicated to some aspect of PCS, you will come across a lot of information that may or may not be relevant to you. It can be tricky and time-consuming to separate what’s useful and what’s not. It’s easy to get discouraged or overwhelmed. You may also find conflicting advice and be unsure of what’s the best option to follow.
In the example presented here, a poster receives conflicting advice about using noise-canceling earbuds. One commenter is all for it, while the other advocates avoiding them.
I wear noise canceling earbuds nearly everywhere to safely move about.
Just a pointer: I would really avoid wearing earbuds and sunglasses if you do. I've had PCS for just over a year now and things only really started to get better when I Pushed myself a bit. If I got tired or symptoms came back I'd take it easy. It's important you keep pushing the boundary a little bit. I think if it's not challenging me, then I won't get better. Sunglasses and earbuds aren't good. It will actually make you more sensitive to noise when they're off so don't wear those.
Experiencing these symptoms is physically, emotionally and mentally grating. I too had severe symptoms where I was stuck in a dark room all day. I am glad you have noise canceling earbuds, those helped me too. You should try blue light limiting glasses. They help for headaches and dizziness.
As a general rule, these devices can be useful if excessive noise triggers severe symptoms, but at some point, patients need to increase exposure to noise gradually.
On average, our patients’ symptoms improve by 60% after just one week of treatment. To see if you are eligible for treatment, sign up for a consultation.
If you haven’t found what you’re looking for on Reddit or are not sure that the advice is sound, you can go through our list of resources and testimonials. Over the years, we’ve covered many different PCS symptoms and therapies.
Patients with PCS can experience a wide range of symptoms, including cognitive, physical, and emotional symptoms. We’ve covered some of the most common, such as headaches and vision problems, as well as some of the less frequent, such as tingling hands and changes in smell and taste.
In addition to these resources, we also have many stories that patients shared with us about their struggles with PCS and how they eventually found a treatment that worked at our clinic. If you’ve been troweling through Reddit looking for help and advice from other patients, these may be particularly helpful. A few examples include:
Cognitive FX is a clinic specialized in treating patients experiencing post-concussion syndrome. Our treatment is appropriate for some similar conditions, including transient ischemic attack, carbon monoxide poisoning, moderate to severe TBI, whiplash, and certain cases of long COVID.
Before treatment starts, all patients undergo a detailed medical examination, including:
After this medical exam, patients go through a brain imaging scan called functional NeuroCognitive Imaging (fNCI). The scan assesses about 100 different areas in the brain and how those regions communicate with each other while the patient carries out a series of standardized cognitive tasks. The aim is to determine where and how the concussion affected their brain.
Our team then combines all the information gathered during these exams and designs a customized treatment plan for each patient. During treatment, patients go through a three-step cycle that is repeated several times a day: Prepare, Activate, and Recover.
During the prepare phase, patients engage in short sessions of aerobic exercise, usually on a treadmill or stationary bike. Exercise fosters healthier blood flow within the brain and triggers the release of a neurochemical called brain-derived neurotrophic factor (BDNF). This chemical improves communication between different areas of the brain and boosts the effect of subsequent therapy.
After exercise, patients engage in a variety of different therapies. This is called the activate step. Some of the therapies include:
Patients receive most of these therapies during their visit, but the exact exercises chosen in each therapy are unique to each person. For example, all patients need cognitive therapy, but some may need exercises to help with attention, while others focus more on memory. In addition, some sessions include exercises from different therapies at the same time; this combination is also tailored for each patient.
For example, in cognitive therapy, you might be tasked with sorting cards by suit into face-down piles while identifying pairs of opposite words from a string of words the therapist speaks (e.g. ‘dog’ ‘cow’ ‘table’ ‘hot’ ‘cold’), an exercise that works both your memory and attention.
The last part of the treatment cycle involves periods of rest between therapies. Patients may receive a neuromuscular massage of the neck and shoulders, engage in breathing and mindfulness exercises, or listen to brainwaves (which affect the brain in a way similar to meditation).
At the end of the treatment, patients go through a second scan to evaluate progress. They also meet with one of our therapists to go over their results and receive a series of exercises to do at home. This homework includes physical exercises, cognitive activities, visual and vestibular exercises, and relaxation techniques. Ideally, patients should do these exercises for about an hour five times a week at first, then gradually decrease as symptoms improve. If our specialists believe patients would benefit from further therapy, we can recommend suitable providers.
Cognitive FX specializes in post-concussion syndrome treatment. Over 90% of our patients experience symptom improvement after just one week. To see if you are eligible for treatment, sign up for a consultation.
Dr. Mark D. Allen holds a Ph.D. in Cognitive Science from Johns Hopkins University and received post-doctoral training in Cognitive Neuroscience and Functional Neuroimaging at the University of Washington. As a co-founder of Cognitive Fx, he played a pivotal role in establishing the unique and exceptional treatment approach. Dr. Allen is renowned for his pioneering work in adapting fMRI for clinical use. His contributions encompass neuroimaging biomarkers development for post-concussion diagnosis and innovative research into the pathophysiology of chronic post-concussion symptoms. He's conducted over 10,000 individualized fMRI patient assessments and crafted a high-intensity interval training program for neuronal and cerebrovascular recovery. Dr. Allen has also co-engineered a machine learning-based neuroanatomical discovery tool and advanced fMRI analysis techniques, ensuring more reliable analysis for concussion patients.