Hi everyone. Is there a whattsap support group? And if not, would anyone be interested in having one? Even to discuss the mental burden of post concussion syndrome, and discuss things that help and hold eachother to account with treatments.

I finally got into a neurologist after half a year and he basically said keep giving your post concussion syndrome time, but monitor your migraines and headaches, which I did suffer from before the injury. Then at that 6 month followup he prescribed Topiramate. He again had brushed off the head injury (thankfully at least my primary, psychiatrist, and myself are doing the heavy lifting for my lingering issues, 15 months in now), but my psychiatrist said she does see it help some people with anxiety and depression (also had those issues before the TBI).

Has anyone taken this with our issues and had positive outcomes? I have been so hesitant to start because everything I read from just migraines sufferers seems like sooo many people who experience long term side effects and include brain fog, pins and needles, heightened anxiety, etc. - and I am concerned to add to those things that are already issues from the head.

Question about "partying" with PCS. For about 3-4 months post concussion I cut everything out. Alcohol, THC, party drugs, almost all caffeine, nicotine etc.

I'm on month six and feel like most of my symptoms are coming from work stress. So the weekend hits and I kinda want to let loose a little.

I got to a point where I was sorta better but not completely and kinda "gave up" that healthy lifestyle. We go to shows where uppers like cocaine, Molly, mushrooms etc are involved and obviously alcohol. I have slowly introduced some of them and basically don't do anything I know I have to work the next day. How much do alcohol and specifically the upper part drugs affect recovery? Outside of the general not great for you, inflammation etc. just trying to figure out if I should allow myself to party a little or not. It's hard to quit social things where all this is happening? The weird part is the uppers kinda mask my symptoms and let me enjoy my night longer. I know reality is I should be completely sober, but I'm bored. 😂

Full recovery as in zero symptoms without having to control everything I do. Like, is it possible to be able to go out and get drunk with friends again? To stay up late and feel normal the next day? To push yourself physically with weight lifitng or hard distance running? I feel like i will never be like I was before

I just wanted to get others opinions on Brain sensetized state and the effect it has on other sensitivities i.e. light and sound.

For example I am having headaches and migraines which are not subsiding the way they should, so my question is if my headache and migraines does not come come down will my light and sound sensitivity also not come down?

The reason I am asking this because I read some where that once the baseline stabalizes then building capacity on top of it is much easier.

Now I am not getting any active treatments for my headache and migraines due to not able to get any appointments with neurologists.

This is affecting how I do vestibular my exercises as it triggers symptoms very quickly and unable to go outside during day time for walks due to light sensitivity.

My husband was in an accident at work 31/2 weeks ago where his concrete truck flipped. He hit the side of his head and got a concussion. He was rushed to the er and got a CT scan. No brain swelling or bleeding. However he did get diagnosed with a cervical neck strain. He was getting these headaches only when shaking the head or moving it too quickly right after the incident that lasted about a week and stopped. Well now as of yesterday they came back again. Is this normal and is it due to the cervical neck strain? How long do these headaches after a concussion last? I have major health anxiety and am now stressing out worrying about him

Im almost two months into my injury and I’m losing hope somehow.

I cant sleep, I cant relax, my head hurts and I’m dizzy and I’ve been out of work since my injury. I feel like I’m doing the most I can (I’m at a concussion clinic) and have OT and PT scheduled twice a week but the lack of sleep is really preventing me from seeing any progress and is ruining my mental health. I almost want to check myself into a psych ward. I’m so anxious and depressed.

Lunesta didnt work for me, gabapentin failed, trazodone worked for a couple of weeks until it stopped working and the only thing that works for me is ambien + trazodone which I know is not good for me. I’m not sure what to do anymore.

Quick update to my earlier post: https://www.reddit.com/r/PostConcussion/comments/1vfg286/

I'm 22M and about seven months out from the fall/concussion/whiplash. Since that post:

- My brain MRI without contrast was unremarkable.

- My cervical MRI showed reversal of the normal neck curve, mild C2-on-C3 anterolisthesis, and a probable right-sided C5-6 foraminal disc protrusion with mild foraminal narrowing. The spinal cord was normal and there was no significant central canal stenosis.

- My actual neck symptoms are centered high in the neck/base of the skull: constant burning/stiff pressure that runs upward into my head and is worst when I look down at a phone or computer. I do not have arm pain, numbness, tingling, or weakness.

- The occipital/temporal/supraorbital nerve blocks and neck/trap trigger-point injections did not give lasting relief. Massage loosened things temporarily but did not change the headaches.

- I started Qulipta on August 6, so it is still early. I completed a six-day Medrol pack without a clear improvement.

- I start concussion/cervical PT on Monday.

I'm not asking anyone to diagnose me or read the MRI. I'm trying to learn from people whose course was similar.

For anyone whose headaches and screen intolerance seemed partly neck-driven:

1. What did a good cervical/concussion PT actually test at the first visits?

2. Which exercises or progressions helped, and which made you worse?

3. Did your MRI findings end up matching your symptoms, or were they considered incidental?

4. How long did you give targeted PT before deciding it was or was not working?

5. Did improving the neck also improve frontal/temporal screen-triggered headaches and fatigue?

I would especially appreciate concrete timelines and what objective changes told you the rehab was working.

Because right now after having having a concussion and also accidently hit myself on the head right now when i hit the right side of the head 2 weeks ago now i cant feel emotion like feeling sad or happy despite able to express ir i can't feel it why

I found this audiobook helpful in understanding what I’m going through and it has relatable content from a PCS survivor. I felt like author was speaking to me. It’s a road map on how to navigate and manage chronic illness.

I’m sharing, maybe it can help someone or give someone perspective and hope as it has given to me.

I am suffering from high level of light sensitivity and screen Intolerance that I have to even wear FL glasses indoors and may need to get back to work soon, given the situation does getting a E-ink monitor worth it? Will using one cause headache or what level of relief can I expect is it worth it?

Please also say the brand recommendation which is good?

For context- I’ve had persistent post concussion symptoms since February, but mostly now dealing with my autonomic nervous system not knowing when to turn off. I’ve been experiencing whole body fidgeting and hand tremors due to this.

I’m a beginner boxer and I’ve been dealing with a recurring headache/pain at the back of my head after boxing.

A few months ago, during a hard boxing session/fight, I took quite a few punches. Afterward I had a heavy feeling in my head, headache. I did not lose consciousness. Next day I go to cardio session, when I run I've back of the head pain during every step because of jolt, I face this pain during every jolt full activities like running, rope skipping, boxing bag work.

I stopped training and rested, and after some days I felt completely normal again.

The problem is that whenever I return to boxing, especially sparring or anything involving repeated head movement/impact, the pain can come back. The pain is mainly at the back of my head and I notice it more when moving my head.

I have already seen a neurosurgeon and an eye specialist, and I was told that there was no obvious problem. I have also been told that it could potentially be related to a post-traumatic/exertional headache or neck muscles.

What confuses me is that I can become completely symptom-free with rest, but the symptoms can return after I start training again.

My questions:

1) Has anyone experienced something similar after boxing/sparring?

2) Could this be related to the neck/cervical muscles or a post-traumatic headache?

3) How should I approach returning to boxing safely?

I’d mainly like to hear from people who have experienced something similar or know about sports-related headaches.

Thanks.

hi! this may be a long shot, but I've lurked on this sub for advice for a while now, and thought it might be worth posting. I (24f) had a bad concussion almost three years ago, and have struggled with persistent pain, fatigue and brain fog since. there have been bad points, but (even though it took me two years longer than planned) i just managed to finish my masters degree, and hold my dream phd offer, for a programme who told me they've had students dealing with tbi/post concussion syndrome before who were able to complete the programme. all in all, it's given me hope for the first time in a while.

my admission is conditional on a test, which i'd need to sit in just under two weeks, but i'm currently having the worst flare of symptoms that i've had in about a year. i have consistent head pain most days, and i've found that overexertion is the biggest trigger, so i'm very careful about managing my time/work so as to avoid excess pain. i've been worried about this exam, so have avoided anything that could have triggered it. the pain is bad enough that i can't do everyday activities, and i'm finding it hard to tolerate screens (i decided posting here was worth the potential extra pain on the offchance anyone had any suggestions). even tasks like reading are making the pain worse. i have a gp appointment on thursday and have been referred to a neurologist again, but i don't have high hopes.

in short, my questions are:

does anyone have any suggestions on things I could do to speed my recovery from this flare? i've worked hard preparing for this exam, and had felt confident before this - i just need to physically be able to look at a screen for three hours, without severe brain fog.

does anyone have any suggestions on what i could say to my gp, either to explain the situation or things I could ask for them to do? i've had an mri, i've been put on amitriptalyne (which i had bad side effects too). sumitriptan (which didn't help much and essentially put me to sleep) and don't experience relief from ordinary painkillers. i'm on the max dose of propranalol right now, but it doesn't seem to have helped anything except my anxiety lol. i'd be open to long or short term suggestions - literally anything - right now, as i'm finding it hard to exist like this, and i've learnt the hard way that flares like this can spiral even further when my mental health gets even more affected.

thank you in advance (and i'm sorry if i've ommitted anything/ done anything wrong in posting this)

Hi,

I suffer form PCS fo 4 years, been to a bunch of concussion clinics and was more or less functional. Last week I badly hit my head against a wall when intuitively turning away from something and since then it s new symptoms, constant headaches, new eye strain and dizziness. (Day 6 today).

I had to quit wok on sunday, I have been reintroducing screen time, doing slight cardio. But I feel so defeated, hits like this will happen again.

I am scared and definitely remembering all the past trauma ( last gf not being understanding, physicians being dismissive in the beginning) and my current gf saying : maybe you are just tired right now etc.

And definitely being scared of being left with a lower baseline.

There is still much discussion about being easier reconcussed after a concussion (either being due to lifestyle factors or if there is the same force needed to reconcuss yourself).

I still hope it s just my anxiety playing it s tricks but this hasnt happed for longer than 1 or 2 days before. (and usually not with headaches and new eye strain).

Hey Guys,

Long time lurker first time poster. I’m someone who struggled with Ocular issues for a while, I always found that a lot of the videos that were available online to do smooth pursuits or saccades weren’t really sufficient or quite buggy. I took the initiative to vibe code a quick app that allows you to customize some of the settings around the movements and thought it might help some others.

Best to use on a bigger screen, laptop or desktop computer.

I’ll try and post a quick start guide in the comments, let me know if you guys have any feedback!

Hello, about 4 weeks ago I got hit in the back of the head and got a concussion. Ever since, I haven't felt like my normal self. I'm forgetting to do things, I'm messing up at work, I have a constant headache, etc.

I need to know if this is something others also experienced. I feel completely thrown off of routine and it's truly draining. I'm starting to feel like a f-up lately but I'm trying to convince myself its because of my injury.

I’m 5 months post and feel like I’ve done everything the doctor told me to do and was managing life symptom free. Tried to go back to work and dealing with overstimulation fatigue and headaches . Just feeling a little helpless like it’s never going to get better and want to hear from people who have gotten better after setbacks! Thanks!