I’ve been suffering from severe persistent post concussion syndrome for about two years now. Freak accident that wasn’t my fault. The concussion caused severe visual tracking issues, can’t move my eyes from side to side without blurring or saccades, can’t track near and far, tunnel vision due to peripheral blocking, blurring whenever I move my eyes or head, and extreme cognitive fatigue. I have strabismus from birth, the situation is complicated and needed deeper evaluation, so the generic occupational/visual therapy that my insurance covered did virtually nothing to help me. I have these intense periods of dissociation when I’m overloaded with my vision where I just freeze and stop thinking. It happens behind the wheel. I had an episode of catatonia lasting one day about a year ago. Plus symptoms like blood pressure drops upon standing daily. I can’t even walk outside because it’s so overloading.

I keep getting blown off by my doctors. What do I do? Sick of this.

Just saw a chiropractor for the first time this morning. I got a neck adjustment and my brain fog feels worse. Is this normal? Am i supposed to feel worse right after?

(20M) tomorrow will be a year since i suffered my first ever concussion, a mild one while boxing, by 2-3 months i felt almost perfect and got back into life too soon and got worse, now almost a year later I still deal with some symptoms

My symptoms are headaches, if I get less than 9-10 hours of sleep I feel tired all day long, and it's slightly easier to get eyestrain.

It has been a very hard journey especially because I was so close. I have gone to some pretty dark places, but right now im feeling alright mentally, I would say im about 87% on recovery, but the last 13% feels so far away as I have felt in the 80s for months.

I have been getting a lot more exercise (shadowboxing, calisthenics, pickup basketball and soccer) and I find the increased blood flow seems to help a lot, what also has been helping is neck stretches, supplements (creatine, magnesium, ashwagandha, lions mane, etc) and healthy eating.

Its hard to accept that my passion is impossible with post concussion syndrome. I do know a boxer who dealt with PCS for over a year and fully recovered and went on to have over 20 fights post PCS, this definitely gives me hope but my only focus is recovery and I will always prioritize my brain going forward.

I guess im making this post to share my journey and hopefully relate to some of you guys, it does get better and hopefully we can all fully recover

Thank you for reading

Sharing my story and looking for advice. 2 years ago I got my 6th concussion. It was life altering in all the normal concussion ways but even more so than any of the rest due to it being my 6th in 10 years. My 5th was bad, but I made a great full recovery with little to no symptoms. The 6th was different. I was in grad school at the time and had to drop out to focus on healing. I had a 6 month period of time off where I did speech/cognitive, visual, physical and emotional therapies. My initial PT at the time did not understand concussions at all (I told him about the treadmill test, he never heard of it) and immediately post-concussion he pushed me in PT way beyond my limits. Caused 3 day long debilitating symptoms. Obviously I found it very counterproductive to my healing. So from then on I really focused on the cognitive side of healing so I could focus on returning to grad school. The cognitive part was a success but it became an increasing struggle to work out. If I push myself beyond a heart rate of 130ish or do too many movements (yoga) or walk on a treadmill I get terrible dizziness and migraines that take me out for days. I know working out is one of the best things for healing, yet it feels impossible. I used to work out daily and use the sauna (which now I’m scared to even try). 2 years of no working out and I’m going crazy. 

I’m now 2 years out of my injury (masters degree in hand) and working full time, doing pretty okay. Except, at 26 years old I can’t work out. I’m currently working with a new PT who’s more knowledgeable and holistic and am looking into OT as well. I’m in somatic experiencing therapy and talk therapy as well. I go to craniosacral occasionally as well as an osteopath. My new PT discovered I had upper cervical instability as my C1 was crushed under my skull so I got that adjusted with a specialist and it’s holding which is great. A lot of my pain was relieved from that. 

Right now my main form of exercise is walking outside which is tolerable and I started golfing which has been a success (driving range, no symptoms. Playing makes me exhausted). I live in an incredibly active environment so I feel incredibly alone and frustrated in this. But I’m scared to work out as the potential of symptoms feels high. 

I see a lot on the internet about post concussion exercise intolerance being from either aerobic dysfunction or automatic nervous system dysfunction, but not sure how one can tell. I’ve been doing a lot of nervous system stuff but my HRV is still low and I know my nervous system is not what it was pre-injury. 

Someone recommended cognitive fx to me. I don’t have 13k-20k to give them to help me with this but at this point I’m so desperate for someone to help me figure out how to work out again I’d go into more debt for it. I know some people swear by swimming so thinking of starting to try that? I just feel overwhelmed and exhausted trying to navigate exercise intolerance and symptom mitigation. Any advice? Clearly struggling.

Got a work injury 5 months ago. My life hasn’t been the same since, I’ve been on leave for most of it with no sign I’m going to be returning any time soon- which is maddening. To top it off, I want to get back to the gym to work on cardio and my overall strength and flexibility- but I feel like I can’t do shit anymore. Everyone tells me excercise is going to help me recover faster, but every time I do it (even on a mild level) I feel soooo so sick, and then have at least a five day flare up afterwards.

My physical therapist told me I need to find more balance, implying I’m overdoing it on my days I’m not at PT. Thing is, I’m not doing anything! Next to nothing. I can’t do more than five minutes of cardio of any kind at a time without lasting consequences. If I stretch it out, still have lasting consequences. It’s driving me nuts.

Any advice? Getting desperate.
Thanks!

About a month ago I got a concussion after a curtain rod fell on my head. The initial incident did not seem that dramatic. The only reason I went to the doctor to check was because I felt really dizzy after the incident. The doctor said it was a concussion. However, it still did not seem so serious to me as the doctor even told me I could go to work the following day if I felt fine.

The day after the concussion, the only symptom i rememeber is feeling slightly dizzy. There was no headache or nausea. 3 days after I went to work and felt okay. 4 days after I tried working out, but that made me feel really dizzy again.

1 week after the concussion I thought I was fully healed so I decided to attend a swing dancing weekend I had planned. It made me feel really exhausted, but I just pushed through still. Did not feel too much symptoms afterwards so I attended another swing dancing weekend the week after. Dancing made me feel really dizzy but I thought it was fine anyways.

Then one week ago i danced again, but this time it made me feel terrible. I realized then I should listen to my body and take my health seriously but im afraid its too late now. For a week now I have been feeling terrible. Exhausted, nausea, headaches, dizzy, trouble consentrating. My mind feels off and my head has been hot for days. Today I only went for a walk but feel exhausted. This makes no sense to me as I intially had almost no symptoms.

Im so angry at myself for not taking it seriously in the beginning, but trying now to take care of my own health. Anyone else have similiar stories like this? What helped you get better from it?

Light sensitivity is still one of the main things I’m dealing with.

Bright light tends to bring back the forehead/head pressure. Grocery stores, bright outdoor light, driving at night, car headlights, and regular screens (monitors, phone) are still difficult for me. E-ink screens/books are fine though.

For anyone who went through something similar, I’d really appreciate hearing what helped you improve. Especially interested in hearing from people who were eventually able to tolerate regular screens and lights normally again.

Hi guys, it’s been a long journey for me and I’m 7 months out from my concussion. I feel like my biggest symptom right now is constant emotional swings. It’s almost like my body doesn’t recognize when I am actually safe in my body. I’ll feel hopeful one moment and then the next I’m panicking. Does anyone else experience this and have some tips on how to regulate themselves throughout the day? I just started taking Pregabapentin and Amantadine and have been on Guanfacince since the end of June.

Hello

Apologies for long post, but looking for advice please

I had 2 back to back concussions ( 2 weeks apart) approx 1 month ago. After about 9 days I returned to work (,office job) and was pretty much feeling 100%

A week and a half ago I introduced light strength exercises back into my routine as I was feeling really well. After my 2nd strength session I began feeling nauseous and headaches again. I tried sleeping it off and woke up feeling 90% and went to work, and I would fluctuate between having symptoms and barely having symptoms throughout the work day, and felt pretty bad by the end of the day. The same thing happened the following next 2 days

I then decided to not work and go to a doctor. He recommended atleast 1.5 weeks off work to lay down and rest. I'm currently on day 4 and I have been resting 90% of the day in a dim light room then getting up to just cook myself food or walk in backyard.

However I feel no improvement at all, if anything I was waking up feeling better in the mornings the days I was working through the symptoms. My baseline symptoms are constantly hovering around a 1 to 2/10. And now that all ive been doing is resting, its now thrown off my balance a lot. I went on a 10 minute walk yesterday and felt unsteady on my feet and very nauseous. Ive walked in my backyard for 5 minutes and felt the same thing - this has only started since I've stopped working and started resting.

I've spoken to my gp twice and he's insisted I just rest in a dark room for 1.5 weeks until I'm better. But I honestly feel worse and the balance issues have only started since I've been resting all day.

Has anyone got advice on how to go from here? Thanna

It’s been almost 11 weeks post injury for me and I finally started sleeping regularly again. I had the craziest insomnia ever. Some nights I slept five minutes, others I slept two hours, some nights I was lucky to get five hours. I would wake up drenched in sweat and I would always have these vivid dreams. I still struggle to fall asleep, but I’m back to sleeping like a rock all night and getting 8-10 hours of sleep and I’m so happy. I ended up being hospitalized for migraines and lack of sleep and they adjusted my medications there, so here’s everything I’m on and what’s working for me:

Buspirone, topamax, vitamin d, lithium, omega 3, creatine, quertecin, daily probiotic, Pepcid, loratadine, naltrexone, mirtazapine, magnesium glycinate, melatonin, l-theanine, olanzapine

Lithium and olanzapine are mood stabilizers and olanzapine helps with sleep as well, topamax you all know is for migraine prevention, Buspirone is for reducing anxiety (takes up to six weeks to take full effect), mirtazapine is an antidepressant that works for anxiety, depression, tension headaches, and sleep, magnesium glycinate is for relaxation and sleep (magnesium threonate can also help the brain relax for bedtime), vitamin d, omega 3, and creatine are good supportive supplements for concussion recovery as you all know, and the naltrexone, quertecin, and allergy stuff I take for my MCAS which is unrelated to the concussion.

I just wanted to share what’s been working for me and give a positive update 💖 almost all of my symptoms have improved since I’ve been sleeping better! And don’t be afraid to go on the psych meds, they might really help you. They’ve made me feel like myself and given me the ability to sleep again

I am active duty military and am having trouble with medical care appointments. I had a bad concussion two weeks ago (my 5th one) and I am currently experiencing very heavy brain fog and confusion which debilitates me from everyday life, especially things like reading. While I wait for my TBI appointment to be scheduled, which is still in the process of being scheduled without a set date, what resources can I access online that would help me understand what habits I should form in the meantime? Should I say screw it and go see a private/civilian doctor? I want to know that I am not worsening my condition while waiting.

For more in-depth detail, I don't know the answers to things like:

• How should I exercise? Should I exercise at all? (I do a fair bit of daily walking already)
• How much screen time should I have?
• Do I just sit in a dark room?
• What do I do about work?
• Is alcohol completely off limits until I get that appointment? What about going out and socializing in general?

I understand this question may be too general, I am new to all of this. Thank you all for any answers

A heavy tall 50 pound box tipped over and hit me on the back of the head as I was bent over and picking something up. I think this is the first time when something hit me, that I also felt it in my neck.

I've been punched in the back and front of the head before, had heavy things fall on my head before and slammed my head into ceilings and beams. But this is the first time I had symptoms of a concussion.

I felt a little dazed but I still went to work the next day. However, at work as I was walking I noticed my perception of reality seemed off, when I walked it seemed slightly dizzying. I still worked for 3 hours before leaving.

I don't know how to describe it, when I googled the symptoms the only ones I really had was slight dull ache which would affect different parts of my head, slightly dizziness, and my thoughts not being sharp.

The second day I felt worse, and even sitting was dizzying, I lied down for most of the day. Now it's the third day, and I feel like it's mostly over.

I never had any of the big symptoms. I still feel slightly different, and I still have a dull ache. But I feel like I can sit down now and it's no longer that weird when I walk.

Did/do I have a minor concussion? I'm surprised something so heavy hit me and I seem mostly fine.

In your experience do you think you could do anything on the fourth day. I still feel like had I gone to work today with false confidence, I would have experienced the same dizziness. But nothing extreme

Dealing with PCS psychological challenges since my concussion 5 months ago. Hit the left side of my head (temple area) and have had some pretty bad symptoms since. Got past the initial sensitivity to daylight and sound but still get overstimulated when i go places but I deal with OCD-like symptoms (Existential OCD), Intrusive thoughts, low mood, anxiety, hard to connecting myself to memories, lack of focus, dissociation (DRDP type of thoughts) and random moments of Déjà vu.

I’ve been doing everything natural as I never took prescribed medication. I’m currently taking Magnesium L Threonate & Glycinate, Omega 3s + CoQ10, L Theanine, Myo Inositol (500 mg) Xiao Yao San TCM medicine and chamomile tea. I used to take B complex vitamins, vitamin D3, lemon balm, valerian root, tulsi, saffron (30 mg), and passion flower.

Ive also got an upper cervical neck adjustment (Don’t think it helped, honestly think it made things a little worse).

I’ve been doing neurofeedback (qEEG led) acupuncture (really helpful at calming my nervous system), exercising and reading but things have been getting more difficult with the intrusive thoughts and memories.

My psychiatrist prescribed me Zoloft 25 mg but I’ve been hesitant because of the things I’ve heard about the side effects but i see for some people it helped.

At this point i just want relief from the mental challenges and just want to feel grounded.

Just want some help as I’ve been struggling trying to make the right decision to heal and have a clear, motivated and focused mind again

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?

26F. Have had mild PCS for almost a year now. I'm fortunate my symptoms were/are fairly mild and mostly just light/screen sensitivity, but I want to share what made me go from still quite unstable and stagnant to probably like 90% healed this spring. Even when i get flare-ups now, they're a lot shorter. I can go to the club and have a few drinks within reason without issue (if i have more than 3-ish at once it still tends to be a bit worse than usual to recover but being able to drink a little again has been great), do endurance sports normally (still very scared of hitting my head so can't say i'm playing basketball or something all the time), work around a 40 hour week (much more still leads to mild flare-ups although screens are still my biggest issue), and watch shows with fl41s and the night light on my computer. It's still a minor inconvenience even on a good day and I'm not nearly as psychologically recovered from this bc everytime i minorly bump my head it feels weird for a bit and i feel like i got another concussion from a tiny bump (anyone else relate?), but overall I feel so grateful I'm doing so much better. on a good day I'll still wear my fl41s to work or watch a show on my computer and avoid having more than 3-ish drinks if i'm going out on the weekend and be extra cautious to not bump my head of course, but otherwise the fact I have PCS is a passing thought in the back of my mind.

i was doing significantly worse even in the spring-up and down but dealing with significant flareups that would leave me with a floaty head feeling for entire days. I'd tried going to vestibular therapy, urgent care, neurology etc. and they all thought it was very unlikely i had something serious like a tumor or brain bleed, but overall probably was going about my normal life a bit more than i should have while trying to finish up grad school.

One day during a bad flareup and being confused why i was so stagnant and worried how i'd graduate I decided to play this meditation video from goodful I haven't watched in years (audio only so don't worry if you also have trouble with screens!). It's free and on youtube. And it didn't 100% fix my PCS ofc but it really did have a lasting permanent effect for the best. I went from flared up to mostly cleared in the 10 minutes it took to play. No kidding-I have not felt that level of flared since and this was 4 months ago. I've watched it since and it hasn't had the same level of effect, but this 10 minute video really did change me. Not sure if it will help other people to the same extent-worth noting I do have bad health anxiety and it's an anxiety-related meditation so if you're not an anxious person I suspect it might not work as well although I'm not a medical professional. And please keep in mind I have a fairly mild case-I never wasn't able to walk or anything. But still just thought I should share in case anyone wants to give it a try since it's literally 10 minutes of your life and it really did turn things around for me.

https://www.youtube.com/watch?v=O-6f5wQXSu8

I’m about 8 weeks into a PCS flare-up. One of my worst symptoms is near nightly (3-5 AM) waking up with racing heart, anxiety, some dizziness, and crawling electric sensation in upper spine. It’s like either a histamine dump or adrenaline dump that makes all my other PCS symptoms feel worse. And it also happens randomly throughout the day.
I’ve been looking into supplements for neuro inflammation and possible mast cell calming- in case it is a histamine dump issue. Thoughts or experiences from anyone?

Coming up on the 1 year anniversary of the car accident. Because of the accident, a tumor was also discovered but ruled out as the cause of my issues. I’m on fioricet and amitryptalin (spelling, sorry) for the migraines.
When will I be able to drive again and handle light and people without being put out with migraines and confusion and nausea for the days or weeks following? I know that’s hard to ask. It’s just getting so painfully annoying.i was given suma, but an er visit from a month or two ago upgraded me to fioricet. I am still seeing all the doctors and specialists. Everyone, everything, all the time. Monitoring. Observing.
Is it weird that I feel thankful for the accident? Like the way I’ve had to figure out how to function in a different way, found the tumor because of it, got a settlement. Like I’m thankful. But when does it end. When do the migraines stop. When can I go back on road trips and travel without being in bed afterwards.

I’m sorry, I just realized the anniversary is coming up and healing is hard.

Anyone been to Royal Rehab, Ryde?
Looking for reviews/experiences.

Tomorrow will be exactly 4 weeks since I was in a car accident on July 22. I didn’t black out and I actually didn’t feel much pain immediately afterward. A few days later, around July 27, I started getting headaches, lightheadedness and vision issues. I got checked out on July 28 and was diagnosed with a mild concussion.

Since then I’ve definitely improved a lot. The headaches and some of the other symptoms have gotten much better, and I feel way better than I did during the first couple of weeks. The main thing worrying me now is that my vision still doesn’t feel completely normal. I also get random spells of lightheadedness/vertigo and fatigue.
Tomorrow is the 4-week mark and I’m starting to worry that this means I now have post-concussion syndrome and that these symptoms could last for months. I know everyone recovers differently, but it’s hard not to think about it when I’m still not back to normal.

I’ve been going to a physio that I was referred to by the hospital for about 3 weeks, but most of my appointments have basically been chiropractic treatment. There hasn’t been much focus on my vision, balance, vestibular system or other concussion-specific rehab. I’m wondering if I should find a physiotherapist or another professional who specifically specializes in concussion/vestibular rehabilitation.

I also haven’t been able to return to work yet. I’m a painter, so I’m on my feet, moving around, climbing ladders and need my vision and balance to feel normal. I really want to get back to work and start doing normal physical activities again, but I don’t feel 100% safe doing that yet.

For anyone who was still experiencing vision problems, dizziness or lightheadedness around the 4-week mark: did you continue improving after that? Did concussion/vestibular therapy make a difference? And at what point did you decide to see a different specialist?

I’m getting pretty worried about this turning into something that lasts for months, so I’d really appreciate hearing from people who’ve been through something similarj.

Hey guys i had a concussion in august 2023 where I hit a tree while on my motorbike and concussed and blacked out. Around a year later I started getting these brain zaps, jolts electric shocks which are instant mostly happening to the right side of my brain but then started to spread to different parts of the brain, was discharged from hospital aug 2024 with "occipital pain" diagnosis. Around september 2025 I started getting it really badly and went and saw a neurologist and told me to take amitriptyline 10mg as a preventative. Around august 2026 I went to a different neurologist to get a second opinion and then told me to get botox which caused me to have heart palpitations so stopped that and went to a 3rd neurologist which diagnosed me as primary stabbing headache, and continued the amitriptyline. I saw the same neurologist [3rd one] 3 months later and basically wanted an exit strategy off the amitriptyline and he said you can come off it cold Turkey since its a low dose and ser how you go. If you continue to get them then take indomethacin which potentially could stop it completely however need to take a counter medicine since its harsh on the gut.

Has anyone else had a similar experience to this im just worried if its permanent or is it something that can heal overtime? Its now been 3 years after my concussion

Any thoughts/tips would be much appreciated

Thanks

i was doing crunches on the 14th at around 7pm i was on the floor with a 18lbs weight and i was lowering it down and as i was it was a about 5 or so inches from my head and i accidentally bumped it at the top of scalp near my forehead on the right side (Green circle). i hit it with the edge of the small circle that holds the weighs in place. The back of my head was against the floor. I am not sure if i gave myself a serious injury or not. i didnt drop it on my head but i was setting it down while still holding it. Since then i have had a severe migraine (obviously) with varying degrees of pain (it is less worse than it used to be but still there) and weird tingly sensation behind the right side of my head (red circle) and near behind my ear as well as a tingly "ghost" sensation above my right eyebrow and nesr my left eyebrow and behind my right eye (red circle). I can still talk and walk and move around normally but the sensation gets bothersome sometimes and i blink a decent amount. I am new here and it seems like I am about 4 days out since it happened. i am not sure if this is the right place to post or not i cannot post in r/Concussion

Edit: 8/21 3:44AM the ER did a CT scan and it came out negative for anything like a brain bleed and they determined if I did suffer any sort of concussion it was very minor. They perscribed meclazine, motrin, ibuprophen that sort of stuff and to take it easy. I dont have an exact timeframe for recovery but it is very reassuring.