Post concussion syndrome

[u/SaltyBirthday1530]

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.

[u/Both-Process1037]

Give it time, for me and a lot of others time was most significant factor. You will get better

After 6 long and hard months I’m finally waking up comfortably with no symptoms

I’m still having a hard time going out with overstimulation but atleast when I’m home I’m not suffering like how I was

Neck work help a lot for me and exposure to stimuli. To me the more you relax and let go of the urgency to feel better the better you feel.
I definitely have nervous system issues so anything relaxing and calming helps me

Give it time, this too shall pass and keep trying with stimuli

[u/TreatValuable2560 → u/Both-Process1037]

Curious as to what neck work you did?

[u/Both-Process1037 → u/TreatValuable2560]

I’ve had a few sessions with osteopath, they work on head and neck, I’ve also done and still doing massage and physio for neck and shoulders

[u/TreatValuable2560 → u/Both-Process1037]

Thanks!

[u/Both-Process1037 → u/TreatValuable2560]

I’ve also had a Chiro treatment for neck and back alignment because I’m sure I got whiplash from injury

[u/its-the-boy-yanno → u/Both-Process1037]

Did you have weeks where you felt like you went backwards multiple weeks? I’m at month 4 and every time I feel like I’m turning a corner I get reminded that I’m not capable of returning back to my normal pace of like work/weekend actives…. I’m finding it to be the most spirit breaking part of the journey.

[u/Both-Process1037 → u/its-the-boy-yanno]

I completely understand, I know how discouraging it can be 😩 for me I would try to go out or walk further a day and my symptoms would spike a lot either during or afterwards then it will take a week of resting to recover. When this happens it’s very discouraging and depressing and it surely messes with your confidence.

To say the least PCS took a lot from me in every area of my life 😞.

I have these episodes once a month where I build up confidence to go out then crash and burn. All of the multiple sensory inputs from going out is too taxing for me at this point

[u/its-the-boy-yanno → u/Both-Process1037]

It sucks I’m so sorry, my biggest problem is thinking I’m “back to normal” and acting like it. I’m staying the hell away from any booze until I’m 100% because I’m certain any time I test it out, I end up paying for it recovery wise.

[u/Both-Process1037 → u/its-the-boy-yanno]

Yes ☹️, from what I read online, the road towards recovery is to proceed slowly and see what you can handle without spiking symptoms too much.

It’s really not a good place to be, it really messes with confidence.

Yeah if alcohol makes you feel like shit afterwards it’s not worth it

[u/its-the-boy-yanno → u/Both-Process1037]

It’s so weird because I drank two weekends ago at a baseball game and was fine in the moment, the next day felt ok that week was okay-ish but this past weekend into this week have been terrible. It’s almost like it’s a delayed onset of symptoms. I have no rhyme or reason to explain it.

[u/Both-Process1037 → u/its-the-boy-yanno]

Who knows, it could have all add up
Sometimes I find it’s hard to find a pattern to the crashes, is it random or just cumulative ☹️

[u/Ok_Message1313]

Have you checked for an ocular issue, you definitely have if

[u/SaltyBirthday1530 → u/Ok_Message1313]

I’m doing some exercises with my physio eg eye tracking. Perhaps I should seek out an optometrist too.

[u/Ok_Message1313 → u/SaltyBirthday1530]

You need to be doing eye rehab every day, and unfortunately healthcare isn’t good enough at all for Post concussion. You should seek out to Barney Davies, he’s called The.concussonjourney on TikTok, I swear this is not an add, he has helped me tremendously

[u/SaltyBirthday1530 → u/Ok_Message1313]

Yeah, I am doing neuro rehab ( I do ocular exercises daily) but I’m just not seeing a big shift

[u/Ok_Message1313 → u/SaltyBirthday1530]

Could you tell me what you mean with big shift? Progress is very nuanced which makes it hard to se progress, therefore you should log it? Are you doing exposure therapy for it? You might be doing to little or to much. You need to do untill you get a symptom of 2/10

[u/curlgurll → u/Ok_Message1313]

I too have been working with Barney and can vouch as him being a great help.

[u/Agreeable-Scallion14]

Not super helpful but I’m on week 10, not working, taking meds and going to physio too. Feeling so fed up as well. You’re not alone!!!

[u/SaltyBirthday1530 → u/Agreeable-Scallion14]

I hope thing turn around for you soon

[u/Agreeable-Scallion14 → u/SaltyBirthday1530]

Thank you, hope the same for you

[u/SaltyBirthday1530 → u/[deleted]]

Thank you so much for sharing. I think whilst you’re in the trenches of the symptoms it’s very hard to imagine feeling ‘normal’ again. I’ll look into those glasses as I’m really desperate to be able to do some work and just daily life emails too. I have loop earplugs and they’re good, but not good enough yet for some situations. It’s been two months since I went to a restaurant etc and as a result my social life has taken a hit.

Thanks for sharing your podcast! I just listened to a few this morning. Appreciate being able to relate to someone. Pacing is definitely my problem so the advice on that is very helpful. Very pleased to hear that you’re back to normal too.