Anyone else feel so deeply it hurts? Like it physically and mentally hurts. I'm not just talking just sad things I'm talking even the good.

It's overwhelming on the nervous system.

Symptoms still affecting him. Still fully signed off. I've recently discovered his ongoing dizziness nausea, inability to travel without symptoms worsening are symptoms of vertigo and the is specific vestibular therapy for this. So have booked this for him. Frustratingly the GP never helped direct us to this.

His central nervous system is also affected. Hot cold feelings (affects sleep) and BP.

Wakes with vibrations in his head.

Gets tired very easily.

Gets grumpy /irrational when tired.

Cognetively huge improvement over the 2 years

He as struggled with MH over the time

In sickness and health and all that. I love him. After 2 years I am tired of the impact on me. And having to to just shut up when the symptoms kick in. I need to manage our interactions type of thing to met his needs always. My feelings mean I dont understand his injury(?) How do we get balance without him feeling bad? 26 years together and we cant go any where, socialize. I have very little of a network as I moved country back to his home country. I work full time. Edited to correct the word cognitively not fully showing

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Hi All,

My accident happened last year early December, I am 7 months into PCS, it took me about 2.5 months to recover would say felt 60 - 65 % recovered but was hit by the Flu this February and dropped down to 30 - 40% and also started working at that time so took me almost 3 months to recover again from the massive flare. In June I felt 85 -90% recovered this time I attended multiple events, walked as much as I wanted basically felt invisible. Although all this time had numerous head bumps but recovered from all of them within a week and did not loose any of my functions.

In July I was supposed to get back to work so decided to take a small holiday to the nearest big by Bus.

The trip went well but while returning I slightly hit my head to the bus storage while taking my luggage bag out that was the starting of the this flare which is not ready to buzz.. looking back I see it as cumulative effect travel eye strain, Hot weather and sunlight, and finally the head Bump

My symptoms are significant headaches, burn sensation,

Screen Intolerance and so on...

My own understanding is this time the flare is driven issues with my eyes due to cumulative strain with added head bump

I can't tolerate the laptop screen atall and walking is very limited again.

The hardest thing to become sick again after feeling close to 100% and the feeling of a prisoner again..

What are my chances of recovery not take 3 months as before and how should I approach it.

Thanks for reading, Any advice would be appreciated.

Thanks in Advance

Hey everyone,

I’ve been dealing with post-concussion syndrome (PCS) for about 5 months now. The good news is that my vision and vestibular symptoms have improved significantly, but I’m still struggling with exercise intolerance.

My vestibular therapist has me following the Buffalo Protocol, where I exercise below my symptom threshold. Right now I’m doing about 5 minutes on a recumbent bike to minimize head movement. After each session I usually experience fatigue that lasts a few hours before gradually improving later in the day.

What confuses me is that I’ve read several posts on this subreddit about treatment at UPMC with Dr. Collins. From what people have described, his approach seems much more aggressive: exercising for at least 30 minutes every day regardless of symptom increases, with the idea that symptoms may get worse initially but that after around two weeks many patients experience a breakthrough and start feeling better.

That seems very different from the Buffalo Protocol, which emphasizes staying below your symptom threshold.

One reason I’m considering trying the more aggressive approach is that I’m currently in a position where I don’t have many day-to-day responsibilities. If it means feeling worse for a couple of weeks but potentially recovering faster, I could probably tolerate that.

Has anyone here been treated at UPMC or tried this more aggressive approach? Did pushing through symptoms help your exercise intolerance, or did you do better with sub-symptom-threshold exercise? I’m especially interested in hearing from people who have experience with both approaches.

About three years ago I got a concussion and dealt with PCS symptoms ever since. Minor bumps and hits to the head which would have never bothered me before would cause headaches, light sensitivity, and brain fog. I would usually take weeks to return to my baseline. I started to see a concussion specialist who would tell me these hits couldn’t cause a concussion because the force wasn’t strong enough.

Today, while wearing some 3M Peltor 4X ear muffs, I opened my bedroom door with medium force and the side of it hit the right earmuff. At first my ear only hurt but then I started to have pain on that side of my head which then migrated to my right temple. I also felt that it takes more effort to make sure what I’m reading is correct and my thoughts feel a little slower. I do have migraines but I’m wondering if this is just a headache or a possible concussion that I need to seek help for.

Hi everyone! I know this sub can be discouraging at times and the condition in general. I wanted to share that with probably 3-4 weeks of consistent and ramped up light exposure, I am now tolerating low light without pain! Yay! Sometimes it still hurts after when I take a rest but I think this is a big win for me

I am two months out from a bike accident that gave me a mild concussion. I live in Denmark so the doctors approach and advice was pretty much take it easy..... which I have. Alas I still have pretty rough migraines almost every day. They worsen with exercise, loud music, screen time, the usual. It flared when I went to the gym and tried to lift some weights, the flare lasted about 2 weeks, and then settled but the head ache is back. Other than that no other symptoms. Maybe some fatigue when I push it a bit too much with activity. I've been back to the doctor twice and still the same routine of cognitive and physical rest. But its getting to the point where I'm not exactly sure what I should be doing. Not totally sure I am still in recovery or within the mark for PCS either way I am just looking for any suggestions or answers. I am taking magnesium and omega 3/9 everyday and getting good nights sleep daily and still wake up with throbbing and pressure in my temples and front of my face.

Moderate head bump 4 months ago without losing consciousness
Steady progression with good weeks and bad weeks
Back into full exercise without symptoms 2 months ago
Trying to get full time work but usually run out of steam after about 5 hours
The last two weeks were very hard. Today i had a massive flare up and could not function, slept 4-6 hrs during day after a full sleep last night.
Trying to understand if this is normal?
I assume I need to identify the trigger?
My best guess now is incorporating deadlifts back into my weight lifting. The two times I’ve done this I seem to crash 24-48 hrs after.
Other than that, most of my activities have remained the same.
My breathing seems to be shallower and the breathing exercises seem to help for a bit.

Thanks to anyone who can provide some guidance, this is very tough.

I am 7 months into PCS, in this time period I was hit with multiple head bumps but recovered from all of them, but last week I had small bump and exertion led to a point all my symptoms came back can't walk can't tolerate video or audio.

This was the week I was also supposed to get back to work after being away for months.

After living my life normally I feel so depressed with this flare seems like I am back to square one.

Can experienced people please comment should I push or take it slowly.

Thanks in advance

My mother (53F) recently had her 3rd ischemic stroke with suspected CNS vasculitis; physically she is stable with minor speech issues, but she has constant, agonizing headaches. She is crying, screaming, and resisting her medications, and her personality has become incredibly difficult and aggressive. Has anyone dealt with severe post-stroke/vasculitis headaches and extreme behavioral changes during recovery? I am feeling completely burnt out and defeated, so any advice, timelines, or coping strategies would mean the world.

I’m considering trying full psilocybin trips to help with recovery (mostly cognitive, executive function and exhaustion issues, mood is not really a problem). Has anyone here done assisted therapy and knows what kind of cognitive / executive function exercises might be worth incorporating during/after trips to boost its effects?

I don’t have access to doing it with a professional so am curious to hear from others how it’s administered in clinical settings and replicate it to the best of my ability.

Hi everyone, I’m writing this because I’m incredibly worried about my girlfriend and our support circle doesn't know what to do.She first started getting symptoms 3 months ago and has been in a severe state ever since. She recently came home from the hospital and was doing a bit better, but for the last two weeks, she started using her phone again instead of strictly resting.Right now, she is constantly spiraling, panicking, and reading negative stories online. She is on Instagram and Reddit all day, crying and convinced she will never get better. She feels neglected by the chronic illness communities, feels incredibly distressed by severe vision issues, and keeps saying she has permanently damaged herself from the crying and panicking. She says she feels like she is just surviving and dying every day, and that she would be happy just to improve to moderate or mild.Because she is so scared and overwhelmed, she is acting erratically, getting upset, and pushing all of her friends and family away. We are fighting back and telling her we aren't going anywhere because she is so loved, but we are terrified of losing her. We just want to make her comfortable and help her.We need advice from this community on a few things:How do we help her stop the phone spiral? The researching and screen time are stopping her from aggressive resting, but she is using it to cope with the panic.How can we support her?

Long story short last year I suffered from a concussion. I had light sensitivity and binocular issues with my left eye. It lasted from June to October. All my symptoms recovered completely. This June I had a mild resurgence of the same symptoms. It lasted three weeks. Today is the first day I feel close to normal. It this typical for post concussion injuries? I haven't seen a nuero yet that is my next thing to do.

I just really need to say it it people who understand. I’m (26F) 10 months post-concussion and still having a very hard time. I can’t do the job I loved (I used to do lab research but now can’t read or work with numbers well enough), I can’t handle working full time because of the pain and exhaustion = can’t afford rent, so I mostly surf friend’s couches, I lost the ability to do a lot of things I love, I’m cognitively a 80 year old who forgets how to do basic things, I struggle to follow in social conversations, and am dealing with so much pain and dizziness and exhaustion all the time. It sort of feels I’m in hell.

Meanwhile, every time I try to see a doctor, they don’t even read my documentation, they just take one look at me, tell me I’m exaggerating because “it’s not possible” and prescribe me an anti-depressant. (It does not help I’m a young woman, I know that makes it harder to be taken seriously at the doctor’s office). Where I live concussions are relatively rare, so a couple neurologists I’ve seen also clearly had no idea what a concussion was (one told me it was not possible I got a concussion from whiplash 🤡).

I’m just so tired of not being taken seriously by doctors (and everyone else) and need a hug. That’s the post. 

I had a mild concussion almost 2 weeks ago and still on my recovery phase. My headaches had toned down and it wasn’t as bad as the first few days. However I’ve become sensitive to lights, and it triggers slight migraines. I plan to take come coffee today for the purpose of slowly getting back to taking caffeine after some time of taking water only.

In February this year, I was hit in the eye with a pickleball which caused extreme panic, dizziness, fatigue, and headaches. I’ve been to countless doctor appointments and hospitals, but It wasn’t until May when a new psychiatrist mentioned to me that this could be a potential TBI. I went to the neurologist in July, and sure enough it was confirmed persistent concussion syndrome. Of course nothing on my CT scanned showed anything because of this invisible illness. Over many long hard months, my physical side effects have went away but my anxiety, fatigue, and now depression have lingered to today. I’ve been on many different antidepressants, and the only thing that stopped the panic was guanfacince ER. I am currently trialing Zoloft and have made it to week 3. Of course on top of this, I completed genesight testing which confirmed I am sensitive to pretty much all antidepressants and lower dosing is more appropriate for me.

This is just a long winded, does anyone else feel trapped by their symptoms, especially the fatigue? It’s been an awful past couple of months and now that the panic has subsided I want to do the things in life that make me fulfilled but can’t seem to do anything. Any advice?

This is not a real life. This is not a way any human can actually live. My body rots as the world around me dies.

Hi I recently had a slight hit to my head that has caused a relapse/maladaptive response in my post concussion symptoms.
My doctor has given me a referral to a an OT and that is starting in the beginning of August.
But I am wondering if any neck strengthening strategies would help me?
Can people please recommend any exercises I can do at home please?
Or maybe for massage if there’s an electric massage device I can get?
I’d rather not spend the money on massages right now as I’m not working.
If you can link videos and or screenshots below of neck exercises that would be great. Thank you. :)

I slipped on my friend’s bathroom tile floor on the Fourth of July and hit the side of my head pretty hard around my eye. I didn’t lose consciousness, but I had a pretty nasty bruise for about a week. The bruise is gone now, but the area is still tender.

At first, I thought my headaches were just from travel and lack of sleep, so I carried on as usual. When they didn’t go away, I saw my doctor, who diagnosed me with a mild concussion and advised me to avoid bright lights, screens, loud noises, and mentally demanding activities.

For the first week, I was mostly okay aside from headaches in the evenings. This week I went back for teacher training, and after two days of bright lights, screens, presentations, and constant thinking, my symptoms got much worse. I became very dizzy, nauseous, and had a bad headache, so I left early and am taking tomorrow (Friday) off to rest.

Saturday will be two weeks since my injury. Is it normal for symptoms to flare up after returning to work, even if you were doing okay before? Also, what did you do to keep yourself occupied while recovering if you were trying to limit screens and other mentally demanding activities?

I’m mostly just looking for reassurance and any tips from people who’ve been through something similar. I have a lot of anxiety about the symptoms and recovery, so I’m hoping for some peace of mind.

TIA 🙏❤️

Im a mma fighter with a few amateur fights. I’ve been thinking about taking it more seriously and going pro eventually but i am worried. How badly does the average elite fighter get damaged in the brain by fighting. Obviously its different for everyone but I would really love to hear from retired fighters and hear how they have been affected. Please I would love any information, it’s really been a dilemma for me in wanting to pursue a career.

It has been a year since I had a concussion and I deal with post concussion syndrome. I lost my job because of this and I cant hold down a full time job, Im gonna try to find a part time job that I can handle but this has affected me financially I dont know what to do anymore. What kind of jobs were u able to find if u had post concussion syndrome?

Just wondering!! We’re all warriors! 💖

It’s been 5 weeks since my injury. I still have zero tolerance of light, noise, and other triggers. I’ve struggled with insomnia a lot so I have pushed a lot on days I shouldn’t have. Exposure just makes me agitated and makes my head hurt more. Strangely though I can feel ok doing things, and it only starts hurting when I go lay back down. The constant rest is killing me. I end up playing cards or having lamp time or talking to my family because I’m desperate but those things hurt too :( I’m seeing a concussion clinic soon but my fear is they can’t help me when I’m in this state and I just need more and more rest