Not living in the real world….really horrible! - Headway

Headway

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Not living in the real world….really horrible!

Rayoflight123- profile image
9 Replies

Hi. My brother is recently home from hospital after 18 months following a brain injury.

He is experiencing a strange sense of reality where everything feels like a dream. It is very distressing for him.

Has anyone had similar and worked through this?

He is taking amantadine drug. I believe this can cause this kind of experience . Has anyone taken this ?

Thank you for your insights!

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Rayoflight123- profile image
Rayoflight123-
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9 Replies
pinkvision profile image
pinkvision

Hi, is he lacking a sense of time, place and body sensations, like being disconnected from the body? I think this is pretty normal for many people. I had this plus effects similar to psychadelic experiences for a number of years. I was not on any medication. To be honest I accepted it, even craved the experience and with hindsight think it was just experiencing life with dysfunctional neural pathways. The good thing for your brother is that it will pass when he begins to reconnect and integrate his brain functions more. Be careful though don't push to retrain, it will happen in it's own time with a little stimulation. I really miss those experiences now!

Rayoflight123- profile image
Rayoflight123- in reply to pinkvision

Thank you so much for your reply….it’s great to know it will pass. Thank you :)

moo196 profile image
moo196

morning, brief reply from me for now. just off to work.yes, fairly common I think. it took me a few months to get any sense of 'normal'. Possibly a year with a reduction in the meds and a lot of retraining my brain /emotions. Headway may have some more advice.

headwayuk profile image
headwayukPartnerHeadway

Hi Rayoflight,

It's definitely worth getting in touch with our helpline on 0808 800 2244 or helpline@headway.org.uk to talk this through.

As others have said it's not uncommon and I think is usually a stage people pass through, but my colleagues should have more experience and information to give you.

Best wishes,

Andrew

cat3 profile image
cat3

High Rayoflight. I was disorientated on returning home after only three months so, after 18 months of hospitalisation, it isn't surprising that your brother sees the outside world as strange. The hospital ward became 'home' for me, I guess partly owing to retrograde amnesia, and my own home seemed confusing and unfamiliar for quite some time.

Hopefully this will pass as his brain re-acclimatizes. But it might be worth considering the Amantadine as an extra issue as it can cause lightheadedness, dizziness and blurred vision amongst other effects (my mum-in-law couldn't tolerate it).

As others advise, do phone the helpline ......

Best wishes, Cat x

Leaf100 profile image
Leaf100

Hi RayofLight

As others have said, input from the Helpline is always a good idea for the medical necessities.

For me, I had issues with not being able to tell where I was in space, or feeling like I was floating. A few times people would come running over as I was leaning so far over they thought I was going down, but I had no sense of it. This was the bi, not medication.

When I got outsise finally I would also find I didn't recognize where I was, I could have been on holiday somewhwre I'd never been before, no sense of even familiarity.

Bi has all sorts of odd and unexpected things go on.

Perhaps reassure him it is part of the healing process, his brain is very busy healing and will put attention to what it prioritizes. It is kind of like a partnership, if he is kind to his brain and body and works with them., rather rpthan feeling frustrated at them, things will go better. Rest assured, they are on his team and doing their best.

Best wishes to you both

Leaf

JULIETstevens profile image
JULIETstevens

Yes. I felt like it was all just a terrible dream and I would wake up soon and my life would be as it was.i I had bereavement councelling and in time I came to accept what happened to me.

Trevor78 profile image
Trevor78 in reply to JULIETstevens

Yes I'd go with that with the slight difference that I too saw various psychologists but never was able to accept what had happened and what I'd lost. I've lived day to day for 40 years, was fortunate to be able to work for 30 years of those and have just taken early retirement. I'm pretty isolated and alone despite all of that (spent too much time with family & not making my own life) and I'm still hoping to wake up from my dream, which at least I now realise isn't going to happen. I'm sure that my remaining time will be spent within that dream though and still trying to recover my pre TBI self, which also isn't going to happen.

JULIETstevens profile image
JULIETstevens

but you can make a new 'self. If we're not going to wake up, then we have to make the best of the life we're very lucky to still have. chase your dreams, enjoy being alive

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