mTBI / PCS 5 weeks in

[BadSkater]

Hi , for those in a similar position, here's where I am 5 weeks in after a mTBI. Main remaining symptoms are;

Memory issues, mainly forgotten names of acquaintances and people on the TV. This seems to be improving slowly. Not sure if I'm re-learning or they a slowly re-appearing from fog. Also I have forgotten some longer words and relearning these is difficult. Osteopath one example.

Headaches, dull headaches when brain tired - still getting these.

Concentration, went back to work with reduced hours and find it difficult to concentrate for long periods - brain pain.

Mental reasoning off, still not back to normal. I won't scare myself by doing any reasoning tests.

Talking to me casually I seem 'the same' now....but I'm not.

I had a CT scan 2 days after the accident, showed up nothing.

I have no plan apart from trying to get on with work . Any suggestions what else I should be doing? Get an mri?

I keep reading that in fact mTBI is actually permanent brain damage that is just not picked up by mri / ct. Finding this info scary and not really helped knowing this.

Thanks for reading!

[ipes2]

I think it very much depends on your body and scenario. Based on my experiences I would say that you need to give it time and patience. Think of your brain having a deep bruise that will take time to disappear. Jobs wise - don't rush it as employers are scared of anything brain related. Better to spend more time of at a reduced wage rather an fail in the workplace. It may be that your brain is not wired for your old job, but may be not. In my case I tried to go back but kept failing at a job I previously found easy - I retrained to be a teacher (God help me!). Bottom line is slowly does it. There are also some memory tricks that help

[BadSkater in reply to ipes2]

Thanks for the reply. Hope your new job is going well.

[WonderingWanda]

I was like you. I tried to go back to work twice. The effort taken to appear normal took so much out of me I did end up making things much worse.

I really caution you to take it as easy as you possibly can. I tried to recover whilst working reduced hours but the recovery ie really a full time thing. It just won’t get better on its own if you are pushing to the point of brain pain.

60-70% of people will be able to function relatively normally after 6-12 months but there is a grossly underestimated proportion of us who do not recover. Because the question has not been asked historically they don’t actually know the long term effects fully.

I was lucky to know a couple of friends who were 10 years and 3 years down the line and got good advice early on. I still didn’t fully appreciate how much it would take from me.

Stay positive but be realistic so you don’t make yourself ill.

I worked to the point of collapse. It’s grim. Listen to your body.

[BadSkater in reply to WonderingWanda]

Hi there thanks for the reply. Hope you are continuing to recover? Have you returned to work?

[WonderingWanda in reply to BadSkater]

No I haven’t been able to read or sit at a computer for more than half an hour at home without the headache building up. I figured if I can’t do anything more than a “Sunday service “ at home then I wouldn’t be able to work.

Plus my job involves other people’s safety and I would not risk harm to others.

[BadSkater in reply to WonderingWanda]

Really hope things start to improve with you, are you getting any help from NHS?

[Isa-BellaDonna]

Hi! CT and MRI and/or the technicians?? can and do miss concussion/brain/nerve injuries. (note: University Neuroscience has better/best testing capabilities.)

Not to worry ...not much time has passed since injury. IF your symptoms worsen (mindful of body changes/relationships/attitudes/more also.....suggest keeping journal) and talk with your doctor.

And remember headway.org.uk. I was/still am thankful....there are other people like me!

[BadSkater in reply to Isa-BellaDonna]

Thanks for the reply

[Ideogram]

Hiya. I'm pretty much exactly the same length of time in as you.

Not really sure my experience is that useful as I am definitely not an expert in this, and should note that I had an awful lot of migraines before the concussion (GP now thinks to be Long COVID) which can apparently mess with recovery. I was also pretty run down at the time so wouldn't say I was in rude health.

I didn't have a CT, but am about to have an MRI (I was already with a neurologist for migraines so GP got in touch with him). Being tested for other things (Long COVID wise) and been put on iron tablets as it seems I was low. Otherwise pretty much told to rest and not go back to work too early.

The fact you're back at work may mean you're doing better than me - I'm definitely not able to work (my job is 100% screens and I definitely can't do screens most of the time, and often can't read etc either), plus I'm still needing to sleep all through the mornings and can really feel the difference when I haven't (I've given up coffee since the accident though so don't really have anything to perk me up!).

Other things you mention sound similar to me - at first I was noticing myself frequently forgetting tasks while in the middle of doing them (lying in the bath sniffing my hair to see if I'd just washed it; almost poured boiling water down myself as I forgot to be the cap on the hot water bottle). Now the thing I'm noticing more is forgetting completely random words or jumbling them up (could have been like your 'osteopath' but also 'turning point'!).

How well I function and how bad the headaches are seems to vary a lot, and has been worse when I'm pre-menstrual or otherwise unwell (had chest infection and various other bugs at the same time), so really hard to tell whether I'm improving or not.

I don't know what advice you've had (though I haven't been diagnosed with PCS, but sounds pretty much similar) so all I can really offer is a lot of empathy and question whether you can rest any more than you're doing-?

Best of luck. It is a bitch.

[BadSkater in reply to Ideogram]

EThanks for the reply, it very useful hearing from people in a similar situation. I haven't actually been diagnosed with PCS , that is an assumption on my part. I'm not doing many hours at work at the moment, 12 hours a week spread over 3 days. After 4 hours, my head is aching. I work in a technical field and am on screens all day. Not sure if it is to do with what side of my head I hit (right hand side) but associating names with faces is much more impacted than technical stuff. Like Taylor Swift was on TV , couldn't remember her name at all. The most famous pop star in the world! Also I've noticed my language has become a bit simpler, using more simpler words. Some I'm struggling to re-aquire like 'provenance'. Remember it, forget it again etc. I'm going to try and go to a Headway coffee gathering in my area. Other things are that I'm somewhat ambidextrous, so my brain is wired a bit weird probably. Also I have a pre existing hormone imbalance that the endocrinologists have no idea of the cause, had a pituitary gland scan for that recently (prior to accident). Anyway, stay in touch and let me know how you get on! I hope your work are being understanding and that your other injuries are healing well?

[Ideogram in reply to BadSkater]

Thanks. Yeah, I've definitely found language affected in that I'm forgetting words and spellings (and I could *always* spell); technically I don't know exactly but I was trying to remember climbing knots / ropework to show my friend some things (safely, in my flat!) and couldn't remember it all. I realise all our experiences are different though so probably not so much use in comparing, but def here if you want to talk about it / sound off (told my friend the other day that I'm NOT irritable after my TBI - only if there are other people or stationary objects :D). Anyway - take care. Rooting for you.

[BadSkater in reply to Ideogram]

Thanks, let me know how you progress, all the best. Forgot to ask, how did you get concussed?

[Ideogram in reply to BadSkater]

Was leaning into the front passenger seat of my car while it parked facing up a hill, and the door swung back closed into my eye. Ironically not the first time I've got a concussion from a car door (though different door, car, part of head and symptoms). I'm not actually remembering another time a (building) door swung hard into the same place where I got this concussion (but no symptoms at the time) so am wondering whether I was already a bit broken without knowing.

If anyone asks, though, it was an epic mountaineering accident and not being attacked by a stationary vehicle.

You?

[skydivesurvivor]

several scans, months in hospital after my TBI. Looked after by M&S, their demise my brothers care had to have various tests to prove my dissabiloty again!! Scan was alarming to doctors who saw it, couldn’t relate it to the lady before them…. The crap continues!! 20+ years of redeveloping ME, alone now, no help from social services still. Blight of day, reason to get out of bed, shower is to go get coffee n paper. Walking keeps me fit I hope. Keep safe n smile!! They may think is mad but we know better!!

[BadSkater in reply to skydivesurvivor]

Sad to hear your story, hope things improve for you. Walking does seem to be a good tonic for dealing with head injuries. Not being at work has made me appreciate the smaller pleasures in life like a walk or a regular routine like going for a coffee.

[skydivesurvivor in reply to BadSkater]

Joke is, now mum died have no social services support. Was told many years back that should call when o need them, day care closed, unable to go alone to where memory clinic found. Coffee team either died or moved away?! Feeling very abandoned!!

[BadSkater in reply to skydivesurvivor]

Oh no sounds rough. Is there a Headway group near you? Maybe they could help advise on social services?