Long term effects of brain injury?

[Silmarillion]

I had a SAH about 18 months ago and I’m still feeling the effects, everyday...My specialist has never really spoken to me about the long term effects of brain injury.....or anything much for that matter....not anything I remember anyway. What did other people on here discover about the long term effects of coping with brain injury...did their specialists talk to them about it?

Any thoughts or contributions welcome

[sealiphone]

I believe it's a common experience for those with a TBI and cognitive symptoms to go through different stages regarding ability, as the brain repairs itself. This process normally takes at least 12 months and beyond, so it's probably impossible to say where this will stop.

I'm not sure what type of specialist you are referring to but I found that Nuerologists concentrate on the physical whilst cognitive is the domain of the Neuro Rehabilitation Service and in particular Neropsychologists.

In my experience it took around three years before my symptoms stabalised, it's a slow process but things did get better.

[Kirk5w7]

Hi if i can add that at 6 years on im still finding i have periods of unexplained balance, fatigue and headache.

The Encephalitis society sent me an nhs publication on learning to live with a chronic illness. So i guess that told me that this is for life.

Just coming out of a 3 day period of inability to go outside because of severe balance issues, sinusitis makes things worse.

Janet xx

[cat3]

Consultants know not to predict the outcome of any brain injury owing, not only, to the complexities of the brain but to physiological differences between one person and the next.

My family were told to 'wait & see', and it took around 3 years for me to realise that I'd reached my plateau. The 18 month point is probably best described as 'No man's land' in terms of rehab ; it's mostly down to acceptance and letting go of the past, so the passage of time is key.

I'm 6 years on from a SAH and life's best when I make allowances for my shortcomings ........................ x

[Silmarillion in reply to cat3]

You always give such wise answers Cat3.it does feel a bit like paddling around in no mans land. People expect that you’re better after 18 months, but don’t know what’s going on. I’m still trying to stabilise the intercranial hypertension....and sometimes I loose up to a week out of my life with headaches, fatigue, nausea, double vision and neck stiffness. I’m begining to worry if it’s ever going to end.

I’m still to scared to fly, go to gigs and ahem....do the other...so scared I’ll make the high pressure worse or even bust another blood vessel....

[cat3 in reply to Silmarillion]

I plucked up the energy to attend a relative's funeral 4 months after my SAH and the general concensus was 'Oh you must be so relieved to be back to normal' or 'God you've been lucky...not everyone escapes unscathed like you have'.............. 😳

So I think people assume you're better once you're dressed and standing, whether its 18 months or 18 days ! I used to get pretty peeved about the lack of understanding but not anymore. My closest family 'get' me and are very protective so I'm fortunate in that respect.

It felt like I was free-wheeling for quite a while until, as a family, we went through a really rough couple of years. It's said that adversity makes you stronger and I must admit it's true (bit like the relief with the cessation of being poked in the eye !)

I hope that day when you can say 'It was a really good day' isn't too far off. Oh, and the other issue 👀 I have it on good authority from Salford Royal that after several weeks it's not a problem........... Night m'dear. xx

[Silmarillion in reply to cat3]

People just don’t get that a SAH is a largely hidden disability....they think because you look ok on the surface that everything has resolved. My family have been so good about everything. I have a hard time convincing others thoughyou can only do what you can do and thanks Cat3

[fredikins in reply to cat3]

Cat you really are The Doyen, I don't know where we'd all be without you gal.

[cat3]

You always cheer me up Fred. I'm here with my slipped disc, shrieking intermittently with the pain ; not at all deserving of such an acolade !! But thank you m'love...........

Hope your Ok............... xx

[oceanm in reply to cat3]

Another big salute to you Cat, I don't have time to come on here much, but when I do, your lovely cheery face is always here on my screen, making my day feel better reading your wise replies to everyone. Thanks so much from me too and hope that you are having a lovely weekend xx

[cat3 in reply to oceanm]

Hello lovely ! So nice to see you too, and thank you for such kind comments. I hope you've been getting the help which you promised yourself and that it's helping your gain more confidence.

Have a pleasant Sunday (well deserved no doubt for all the good works you do) and I hope you'll get the glorious sunshine we've seen here today in NW. 😏

All best wishes Maria.............. Cat x

[oceanm in reply to cat3]

Hello lovely again, awwwww thanks so much again for your lovely words, good to hear that you have glorious sunshine too

Me, I've just been throwing myself into work to keep my mind off everything, burning out, running away from everyone and then throwing myself back into stuff ... Not probably the best idea really but it's the only way that I can cope.

Take care and enjoy the rest of the weekend (want to do an emoji but not sure how to do one on here) xx

[cat3 in reply to oceanm]

For future reference, this is an emoji :-

(colon dash bracket) & leave a space either side.

Let's talk again soon ! (I'll message you in a week or so) xx

[2stroke]

After 2 strokes, i mostly know what ive read on here, or read on you tube.