r/PostConcussion

I just need advice from anyone who might have been in the same boat.

I was concussed in March and have worked with a physio, occupational therapist and a psychologist on my recovery. I left from NZ to Europe on July 16th and I genuinely thought I was recovered enough.

I am at Tomorrowland which is a huge festival and such an amazing opportunity, its really hard to get tickets to. I went a bit too hard on Thursday night and didnt sleep very well. I spent most of Friday crying and just stressed and anxious. I feel so homesick (this is not my first time doing this exact trip and I was fine last time in 2024. I had the time of my life).

I have some anti-anxiety medication that I take for flying, I took some yesterday (Saturday) and went into the festival and I did have a really good time, didnt drink and tried to get a decent sleep. However it is Sunday now and we have one more night of the festival, its the biggest night and I am just feeling really unbothered about going. My anxiety and depression are so bad post concussion. If I have to take anti anxiety meds to enjoy myself should I just go home?

We have another festival in two weeks time in budapest and the artists that are performing are so so good! Some of my favourite artists. I don't want to miss out but is it worth it if I am miserable?

I have enjoyed other aspects of my trip prior to the festival buuutt I am finding everything a lot more stressful than prior trips I have taken. Like I am stressing about money and time and everything. But I don't want to cut my trip short if I can push through. I am so torn.

TLDR: I'm travelling internationally and my post concussion anxiety and depression are really bad. I think i want to go home but I also don't want to miss out on opportunities, who knows if I will be able to make this trip happen again?

I cannot escape. For a year and a half now. I’ll start to feel a little better, taking it easy jsut resting on the couch. So then when I’m stable I try to expand. Just a tiny bit. Like, I’m gonna clean my room for 15 minutes. Or I’m gonna roll down to the ocean on my electric wheelchair. Or I’m gonna talk to a friend today. And the next day, bam. It’s like I’ve been hit in the head again. Just the most heavy painful disgusting feeling in my head like I cannot tolerate any thinking or sensory input. Headache and nausea and dizziness and breathlessness and feeling like I have a fever almost. It feels exactly how it felt the days after the initial hit. And then I have to treat it exactly like a new concussion. Literally bed rest and not doing anything to make it worse until the flare ends. It’s horrible.

The biggest triggers are exercise and mental effort. That’s why I have the wheelchair. I’ve tried graded exercise and it just made me deteriorate. If I increase, and then crash, and then increase more, the next crash will just be even worse, not better. Even if I just do the same exercise over and over with it increasing, I will continue to crash every time as if I’ve been re-concussed. It just never acclimates. It’s like I’m living in Groundhog Day. How is it that I got hit when I was 21 and now I’m 23 and in bed once again feeling like I just got hit yesterday because I dared to put some boxes on some shelves and played a crossword puzzle.

I’m about 3 months post-concussion and still struggling every day. My CT scans and brain MRI have been normal, but my symptoms have persisted and, in some ways, have gotten worse. I initially had a headache/pressure that lasted 6 weeks. I started getting better than did vestibular therapy and got new onset constant nausea, dizzy, and rock/sway vision the last 4 weeks. It’s been miserable.

My main symptoms are:

Constant nausea and dizziness - rocking on a boat, when focus object is swaying
Dry heaving at times
Eye pain and eye fatigue, especially with screens
Body tremors and shakiness
Balance problems and feeling pulled off-center walking
Neck pain and a pulsing/internal vibration feeling in the back of my head and neck
fatigue and weakness, just feel like I have the flu
Screen intolerances and it’s hard as I’m trying now to return to work and keep my job
wake up some nights with my heart pounding and feeling nauseous.

So far I’ve had:

Multiple ER visits - CT scans and a brain MRI (all normal)
Vestibular therapy (which made me much worse and set off nausea, dizziness was new symptoms.
Neuro-optometry evaluation and being prescribed prism glasses for eye alignment issues next week
ENT evaluation with suspected vestibular dysfunction, put on prednisone didn’t help
Upcoming neurology follow-up and additional testing

I’ve tried medications including Zofran, meclizine, prednisone, and amitriptyline with limited improvement. Zofran hasn’t really helped my nausea.

I’m trying to stay hopeful, but it’s been difficult because I feel sick almost every day and haven’t been able to return to normal work or activities.

Has anyone experienced persistent nausea, dizziness, eye pain, and neck symptoms this far into recovery? What ended up helping you the most, and how long did it take before you noticed meaningful improvement?

4 years ago I had PCS which took almost a year to recover from the typical concussion symptoms. Throughout that time I started developing neck pain which gradually made it’s way to my lower back and hip. I’m aware it was likely a whiplash incident too which explains the neck pain.

The last 2 years I’ve had hip pain in my right side (the side that got hit) and pain in the groin/abdomen that is yet to go away.

I have tried countless treatments, I am fairly active and do regular stretches and have even done strength training and now regularly meditate. Ive been reading about relaxation techniques in the pelvis and trigger point therapy which is supposed to help so I’m trying that at the moment.

I recently saw a PCS specialist after investigating the numbness and tingling in my arm that randomly came up.
The specialist explained about the nervous system reacting as a result of the trauma which is giving me the pain (not damage). He’s prescribed me with breathwork which has completely eradicated the tingling arm but the hip pain is still persistent.

Has anyone else experienced ongoing discomfort that doesn’t fit into the typical PCS symptoms? How have you dealt with this?

I my TBI from a surfing wipeout 16 years ago - the kind where you know something's wrong the second you surface. What nobody prepared me for wasn't the injury itself, it was everything that came after: Major post concussion syndrome, fatigue that doesn't look like "tired," the way friends stop checking in after month two, and how hard it is to explain to doctors that you're not okay even when scans come back clean.
A couple things that actually helped me, in case they help someone here:
• Hyperbaric Oxygen Therapy — Most of my post concussion syndrome symptoms greatly improved after this therapy. .
Finding one person who got it - not a support group necessarily, just one person who didn't need the injury explained to them every time.
I ended up channeling a lot of this into starting a small nonprofit (Strength In Pain Foundation) tocused on IBI survivor support, partly because I couldn't find resources like this when I needed them.
Not trying to sell anything here — just wanted to share what worked in case it's useful to someone still in the early, confusing part of recovery.
What helped you? Genuinely curious what other people found, especially anything that isn't the
"standard" advice.

At this point I don’t seem to get many symptoms from watching tv or say watching my friends play video games but programming or playing a game myself still seems to trigger pretty serious symptoms.

Has anyone made any progress here or does anyone understand what drives the difference. I seem to get some pain and stiffness in the back base of my neck when this happens sometimes so it may be related

Hi all, I was wondering if someone’s been in a similar situation as me.

Edit 1: I forgot to mention that my last concussion was almost 2 years ago (2024) from a car accident. I had a small C-6 vertebrae fracture as well. The reason I forgot to mention was because I’ve been feeling like I’ve been declining little by little for years after my biggest concussion in 2016.

For my concussion history/background:
I (27F) grew up playing water polo (played until 2022), and I’ve had quite a few diagnosed concussions (and probably some undiagnosed as well). The worst concussion I had gotten was in 2016. When I got hit in the head, my legs gave out and I sunk down in the water. My teammates helped pull me out of the pool, my vision was blurred, I was unable to walk right, and pupils were two different sizes. There were some other symptoms as well, but it was all a blur (pun intended). This concussion caused me to gain 40lbs in 2 weeks and have never been able to speak the same.

Not sure if it’s relevant, but I was medically neglected by my parents (walked around on a broken foot for 5+ years, dealing with muscle tears, etc). I’ve been working hard to undo years of issues that I was not allowed to get taken care of before I was 18. So a lot of my concussion symptoms were overlooked, besides a handful of my big ones (which were diagnosed).

Lately I have been having even more difficulty speaking, and my mind feels trapped. I am able to write as I think, but if I were to read this to you, it’d sound very different. There are times where I try speaking, and I know what I want to say, but I cannot physically say it. It’s been so frustrating because I’ll be in the middle of a sentence, and then I just stop talking and can’t speak.

I’ve also been having some really bad memory problems lately as well. On top of this, I’ve been working on jogging. I’m pretty out of shape, and my pupils have started to dilate to 2 different sizes when I really exert myself.

Basically, I’m really nervous about everything right now.

I’ve been trying to get this medically situated, but nothing is showing up on my scans. I was dismissed by my neurologist because I “seem fine” despite everything. I try to explain how much I’ve changed physically (which happens with time, so I’m not too stressed about the physical) and with my memory/speaking problems, but the neurologist didn’t even address it. It just felt like she spent the entire time trying to tell me I’m normal and nothing is wrong at all, and that it’s normal to cognitively decline and for my pupils to be 2 different sizes when exerting myself. I’m honestly not too worried about the pupil thing, but I’ve only seen it occur when I’ve had concussions, so that’s why I’m mentioning it.

TLDR: I’ve had a lot of concussions in my past due to a contact sport. I’m now having issues, over 10 years, later with speaking, memory, and strange pupil dilation. Scans come back normal, and neurologist thinks I’m perfectly fine, but I don’t feel fine with some recent changes.

I don’t know, maybe I am just overthinking things? It feels weird with things changing like this, and with it getting harder to speak and remember things, but maybe that’s just a part of getting older? Has anyone dealt with anything similar? If so, what did you do?

I don’t think I can look into this issue for much longer, it’s starting to add up cost wise. So I’ll probably just deal with it as is. I don’t even really know how to go about this anymore anyways, I guess that’s why I’m posting here.

Feel free to ask me any questions for clarification. I’m pretty much an open book at this point lol

I’m sorry to post so much lol but this is a tough time for me. For reference I’m 6-7 weeks out from my injury. I know pushing is good and all but everything I try gives me a severe migraine, not a simple rise in symptoms. (Reading, playing cards, being in low light, being outside, taking a shower, eating, walking, etc.) I know total darkness isn’t the answer and I can’t even handle being in the dark anymore unless it’s bedtime. Am I just making things worse for myself and adding on recovery time or do I need to push through this pain until it doesn’t give me a severe migraine? Any advice appreciated thanks

I’m four months post-concussion and screens are still my main trigger. My phone is improving, but TV and computer monitors tire me out quickly. Dark mode helps, but I need to return to a desk job.
Did special monitors like E Ink, RLCD or Sun Vision help anyone? Or was it more about settings, glasses, vision therapy or gradual exposure?

Anyone else's memory getting worse as time gets further from your original head injury?

I'm 2 1/2 years post concussion syndrome and I find myself setting something down and not knowing what I'm looking for within seconds or walk away a minute to come back confused how something got there when someone clearly seen me put it there I struggle to believe them.

It seems like these occurrences are becoming more frequent.

My mom's side does have a heavy history of dementia/alzheimers so unsure if this makes things worse or not.

Hi all, I’m about 4 months post concussion after spiking my head on a cabinet door that was slightly propped open above me. I’ve improved 10 fold, my dizziness happens less frequently and I’m generally able to drive without and issues after getting out of the car (this was a huge hurdle for me) I’m still not back to normal, though I’m probably at around 75% of my pre-injury capacity. With that said I have a few questions that I need some help with.

1. When is it generally safe to consume alcohol again? I’ve tested it a few times and each time it feels like a game of roulette. I’ll feel totally fine the next day, have a great morning but then that week will be easily more symptomatic than the week prior. Does anyone have any experience with introducing alcohol into your system? Should I wait till I feel 0 symptoms and am practically back to 100%?

2. What’s with this sinus pressure/sensation. When I hit my head it was the first change that I noticed, and it was constantly a feeling a dealt with. These days the sensation comes and goes, some days it’s always there and others it just pulses into my right nostril almost near my eye. I have no idea how to explain it and have been scouring this sub for more info on what to do about it. Has anyone else experienced something similar??

I'm supporting someone with probable M.E. and concussion. He was given 2mg daily melatonin but this brought on akathisia - it's so awful to see and not know how to help. Has anyone else had this after melatonin? How can I help? Thanks

Sorry this is a long post: 

About 1 week ago my mom was in a rear end car accident. She never lost consciousness but sustained whiplash and a concussion. She’s on a blood thinner and she’s got good results from her CT (no bleeding or swelling). I really just wanted to know what are the best ways I can help her heal. My mom is a small business owner, working on her PHD and is an adjunct professor. The thought of not returning to how she was before for months is stressful and overwhelming for her. She knows she’s needs to prioritize her recovery and healing, but hearing month’s long recovery is a lot to take in. 

She saw her PCP this week and they said it could be a few months before she feels back to a normal and also discussed post concussion syndrome with her.

The earliest she was able to get into a concussion specialist is early August. 

Symptoms she’s still having 1 week out: sensitivity to light and loud sounds(no pain but just sensitive), feeling whoozy standing too long, head still feels kinda full. Mornings are rough but afternoon/evenings seem to be when she feels good. Waking up at least once in the middle of the night. Feeling anxiety about getting hurt again, how to continue to make a living, and long recovery. 

Here’s what we’ve been doing so far: 

-short distance car rides (don’t worry she’s not driving) & sitting  outside 

-letting light back into the house 

-So far she does 10 minutes on mahjong on her phone wearing red light glasses. 

-we’ve done no tv and no computer time since day 2 (1st day we were just told whiplash so she did unfortunately watch tv the first night).  I’ve been working her emails. We are going to try 30 minutes of a short show today. 

-she is getting up and moving around the house (light chores, etc). 

-she’s combating boredom with small activities like reading physical books, coloring, card games. 

I am open to any advice, recommendations, activities, or things we should try to just help my mom. We know she will get better but this is just something new for all of us to navigate ❤️ we are calling it a pivot for us. 

Hi everyone. I’m a 35-year-old woman who was in a motor vehicle accident about a week ago. I had a GCS of 14, underwent surgery for a skull fracture/brain bleed, and was discharged four days later.
Right now I’m walking independently and don’t have major cognitive deficits, but I’m dealing with:
• Muffled hearing in my left ear (with recent ear surgery/packing)
• Pulsatile tinnitus
• Loss of smell and reduced taste (although I think tiny bits of taste may be returning)
• Anxiety about what recovery will look like
I’d love to hear from people who had a **similar injury**, especially those who regained hearing, smell, or taste over time. When did you notice improvement? What therapies or specialists helped the most?
I’m not looking for worst-case stories, just realistic experiences from people with similar injuries.

I’ve always wondered why doctors prescribe things that kill pain throughout the day and boost energy when that just makes you worse over time.
The most important thing during Post concussion is to listen to your symptoms! Hiding them just makes you push through them subconsciously leading to them just get worse over time.
Could someone explain that? I get that they get used during night so you can sleep, or chronically symptoms that can show if it reaches 2-3 point over the average, but shit like Amitrypiline or nortripyline for two examples. Dosen’t that just harm you rather than benefit you in the long term?

I’m on week 11 of post concussion syndrome. I’m on nortriptyline and doing physio but my recovery feels like two steps forwards, one step backwards at times.

I’ve not been able to work since my injury and my quality of life is very limited. I struggle to tolerate laptop work, noise and have vestibular issues. I’m also very fatigued. One of my physios exercises includes cycling on an exercise bike at a low heart rate with the aim to gently increase it but I still have symptoms at 110bpm. Has anyone tried anything that works? I’m really feeling so fed up.

Anyone else eat more yet still losing weight since their head injury?

i’m on my second day of my concussion and my main symptoms are blurry vision, confusion and difficulty focusing, irritable, random crying, change in senses like smell and taste and exhaustion. i’m not necessarily having a headache but i’m feeling these more emotional symptoms severely and i’m wore tf out, could it also be from stress while having a concussion?? the longer the day goes on the worse i get, also i’ve already been diagnosed at the doctor, also should add i got the concussion while drunk and kept drinking before i knew,, im not drinking anymore now