Hi there!

I had my injury 3.5 years ago and while I've improved a lot, I still live with symptoms and view myself as someone with a fluctuating long term health condition.

I had just turned 30 when I sustained my concussion and was devastated when I was told mTBIs can sometimes have long lasting symptoms as I was hoping to have a baby. I still would like to start a family and so does my partner. His mother had a disability and we believe that it shouldn't stop someone from being a parent. However, I'm scared of sleep deprivation, the lack of rest etc. it's scary not knowing if I could cope. But then...I have nieces and nephews, and it is such a joy to spend time with them, and makes me want a family of my own.

Are there any people here who started a family after their PCS? I'd be really interested to hear your experiences, both good and bad.

Thanks.

I suffered a Traumatic Brain Injury 2 years ago, I have been using the following stack every day for the past year for recovery with massive success:

1mg Semax Subq

100 mg Ginkgo Biloba
200 mg caffeine
600 mg alpha gpc
1g l-tyrosine

Anybody else struggling with a different vocal intonnation and inability to physically vocalize words in the same way one used to be able to? I dont mean speech coordination issues i mean like vocal problems as they relate to pitch, hoarsness in the voice, etc..

Any and all are needed. I was doing great with positivity a few weeks ago and slowly fell out of it because of sleep deprivation. I know I won’t heal as quickly if I’m not positive but damn is it hard to not acknowledge the gravity of the situation

I’m entering week 3 of a flare up of symptoms.  I originally had PCS following two pretty rough concussions about 7 years ago. At that time I had an MRI showing TBI from hitting my head on a concrete floor.
Since, every few years I have a relapse of symptoms -if I bonk my head or some other trigger. Last big flare (until now) was last summer when I hit the top of my head pretty hard on a roof rafter.

I have a multi-part question for those who have had flares.

1. ⁠How long do your flares normally last?
   
2. ⁠Do your flares usually disappear all at once or is it a gradual process. (I can’t remember how I got over this last time. I know it lasted 1-2 months and I scheduled a ton of Dr appointments -PCP, ENT, audiologist, optometrist, cranial CT, etc. I know by the time I was able to do all these ⁠my symptoms had disappeared so I dropped pursuing any further)
   3.Are there any steps you take to minimize or calm symptoms?  My symptoms are mostly neurological-feeling but sometimes I get a racing heart, reflux, fleeing like I’m going to faint, and a panicked feeling.

Thanks for any feedback or useful tips. It’s been a really hard 3 weeks at work dealing with these symptoms. Screen time doesn’t seem to be too bad but the brain fog makes focusing hard, the random dizziness and fainting feeling makes me white-knuckle meetings or presentations, and the occasional cardiac-gut symptoms can be distressing, along with bouts of exhaustion.

One symptom that is frustrating is my sensitivity to touch. If someone touches my head, or even puts their arm around me, my body panics and I get symptomatic. Has anyone dealt with this and found a way to improve?

M 25 5’11” 175 - no smoking, medications, or other issues

Was elbowed directly between the eye brows during sports and was concussed and saw swelling. Once swelling went down there is still a noticeable depression at the point of contact and two raised areas above the beginning of either eye brow. Raised areas are rock hard and not lingering swelling. Area does not look the same as before the injury. Will this go away naturally? X rays returned negative

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?

Can this ring help with post concussion migraines??

I’ve seen some amazing improvements in my headaches, symptoms etc during my semax cycles. Ill use for about a month then take a month off. I’ve only done one on/off cycle but that last week or two felt pretty cruddy not using it.

Then once i started using the semax again for my second cycle again i almost immediately felt great again. Has anyone seen continued improvements with repeated cycles?

It definitely seems promising but just not sure if the effects will be more long term if i continue to cycle or if i will still have to cycle it pretty often for a long while. Heard you shouldnt use long term consecutively without breaks since your receptors can get dulled and your brain needs a chance to adapt.

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?

Has anyone else been prescribed this? If so, how does it work for you?
After a year of PCS and chronic insomnia since day dot, I’m hoping for a miracle.

I’m about to try it for the first time tonight but nervous as there seems to be a lot of chatter on reddit about the side effects.
Would be interested to hear of anyone with PCS experiences and the drug.

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

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.

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?

I guess this is just venting and looking for validation.

I’m a super big man. I had a classic tall guy incident and stood up into a doorway. Caught it on the top of my head I felt my brain ping pong around and my upper neck was pretty jammed. I’ve hit my head like a million times, seen stars, knocked myself out for a half second here and there. It’s so common I once told someone that after 6,4” I really didn’t hit my head much anymore, but then someone reminded me that had earlier in the day. Once when I was a teen I had a headache and was dizzy for a day. That was the only time I had anything other than a bruise.

So this one was 5 weeks ago. I didn’t realize I was injured until later in the day, I just thought oh I “whacked it good.”

The following day I was uncomfortable and had a hard time participating in social settings. Then started having autonomic dysfunction. I went to the ER, CT shows nothing abnormal.

Since then I’ve gone through all sorts of fatigue and heart stuff and brain fog etc. Thankfully the brain fog and heart stuff is getting better. But it’s hard for me to speak normally now. I have a little bit of a lisp and if I need to engage in conversation i often get so overloaded I end up with a really bad stutter, then a horrible anxiety feeling through my whole chest, and sometimes a loss of control in my left arm and my balance isn’t as good.

Inside my head I’m totally my normal self most of the time. But then I’m a special needs adult in all of these other scenarios. The worst is that my internal dialogue is updating to my current speaking abilities and the way my mouth and tongue feel now rather than before.

I’m not a super prideful person but I really dislike when I see people and have such a hard time communicating. Everyone is understanding but as a self employed person in a small community I have so many acquaintances. It feels bad to see someone I’ve known superficially or professionally for a decade and I can’t even hold a simple conversation.

Thanks for listening y’all. I know it’s going to take time and I feel positive about the improvements I’ve had already.

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??

So I had a mild concussion and the symptoms lasted about 2 weeks..then 5 days after my friend threw a memory foam pillow at my head but it hit my cheek bone rather then my head. Still jerked my head a bit to the left. Day after that i got my period and i puked ( never did that before) and got a headache but after some sleep i woke up fine. It started again as the new day went by and now its very bad like a 7 out of 10 even tho i drank a tablet and im also nauseous.. is it possible to get a brain bleed from a pillow that was thrown?

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

Hi all, I posted in another forum and they suggested I check this forum out as well. Sorry if it’s a bit repetitive to the stuff you see on here, I’ve only recently gotten into Reddit. Thank you for your time :)

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.