My story of long Term PCS symptoms + derealization

[DL123]

Hello everyone I’m Dan.

I recently joined headway (about 2 weeks ago) and have yet to get involved, but I thought now I would share my story and possibly connect with others in similar situations.

Back in January 2017 I had a bicycle accident on my way to work, I still to this day can’t fully remember how I came off the bike as it all happens so quickly but I fell off to my left hand side and the first part of my body to break the fall was my head making contact with the pavement. Unfortunately I wasn’t wearing a helmet and I just remember a massive thud to my head and then darkness.

I was knocked unconscious for roughly about 3-5 minutes based off the info I got from others that found me unresponsive. shortly after it happened I was helped into the staff canteen at work which was the moment where I was sitting in the canteen that I became conscious again.

I was taken to hospital for a CT scan which came back as ok (no signs of bleeding on brain etc) and then sent home. Where I assumed after a short period of time I would make a full recovery.

unfortunately that wasn’t the case and over the next few weeks I was experiencing lots of different symptoms (12 out of the 14 listed common symptoms for PCS) but I had no idea what was going on with me. I had no clue about concussion, Pcs or anything. So I paid privately to see a neurologist, and he confirmed it was PCS that I was experiencing and hopefully over time things will

improve.

It’s been a long hard battle since that day I had the accident. trying to adapt to this massive change that had happened in my life.

Not only with the symptoms but One of the hardest things I have found is trying to get everyone around you to understand and listen.

from family, friends, employers and GP. That’s been of the most frustrating battles ( which I am sure many of you on here can relate to )

I wish I had found headway sooner as then all them times I wouldn’t have felt so isolated and alone, I think being able to relate and connect with others in a similar situation would have helped me along the way.

sorry I know this is a long read but I appreciate anyone who takes the time to read it.

I was just wondering has anyone ever experienced or have any knowledge of Derealization?

When I regained consciousness from my accident I felt as though at the time I never came fully back into my mind and body. I know this might sound unusual, but it felt and still feels like the world around me isn’t real and like I am in a dream. And for a long time I’ve been wondering how I can reconnect or if it’s even possible to.

thanks for reading.

[Jonty77]

not sure if it’s the same, but I described it to someone the other day like this… I feel like this bit of my life wasn’t written, like life wasn’t expecting me to survive the accident and has been a bit taken by surprise. I feel like I’m sat back stage in the green room hanging around whilst the writing team decide what to do with my character. They have to decide a whole new story arc and write the script and stage directions and everything. I’m hanging around doing bits and bobs waiting for the next draft to get handed to me.

Just today I said to someone “I wonder if this is how ghosts feel?” Not, not here, but also not quite here either.

I hope in some way you feel a kindred spirit (accidental pun🙂)

[DL123 in reply to Jonty77]

Hi Jonty thanks for replying, it’s really interesting to hear your situation and how it’s made you feel. Sounds similar in a way to how I have felt, and it’s nice to be able to relate to someone in a similar situation. I hope for both of us we can get back a sense of control in terms of steering our own ship and writing our own stories.

[Hidden]

Derealization, also called 'going wide', does it feel like you are not connected to the physical world and you are living in a dream?

Have a read of 'My Stroke of Insight' by Jill Bolte Taylor and see if your experience is similar. She calls it 'Nirvana.' (She is a neuroscientist and relates it in understandable neurological terms)

If you read 'The Ghost in my Brain' by Clark Elliott, (it's about PCS), he describes it as 'metacognition.' (He is an AI scientist and relates it to neural networks)

I had similar experiences, strangely I thought it was amazing, but I recovered.

[DL123 in reply to Hidden]

Hello pinkvision thank you for taking the time to reply. Yes I feel disconnected most of the time, like I am not connected in my mind, body and spirit/soul. The world around me at times feels dream like I have to focus my eyes so hard to try and work it all out. I can get overwhelmed in busy noisey environments as it feels like too much sensory information for my brain to process.

I will take a look at both of those, thank you so much for sharing

[catrabb1t]

Possibly I had similar experience. I felt like things were dream-like. At the time I used words like hazy and thinking back I associate the colour orange... I was tired and forgetful and the passage of time was not the same. This improved for me around 18 months after surgery.

Sorry to hear your friends are not showing interest in meeting up. Do they meet at the pub after an activity? If so you could go for the chat. They sound routine based and are not thinking how they can adjust to see you. Busy people are like that.

Have you looked into your local area for what is happening? There might be something you can go along to and it could become a routine for company. Things like book groups. Or, craft groups where you take your own and chat. You could just take a puzzle if not crafty.

If you are good at something you could volunteer to do that at a local scout group - they always want volunteers. Or, you could go along as an adult helper. Once you tell them what you cannot do, then a little role could be worked on.

Could you volunteer to chat to local elderly folk who are isolated? Here we have a organisation who looks after the elderly on a social basis and they look for volunteers to visit them in their homes. Although I appreciate that travelling around is part of your difficulty. They might pay your taxi fare if it is not on a bus route...

[DL123 in reply to catrabb1t]

Hi thanks for the reply, I am glad to hear things have improved for you. Definitely some similarities with experiencing the feeling of the world around me is dream like.

Appreciate your suggestions definitely some good advice I do like the idea of volunteering in some capacity. Especially chatting to locally elderly people as I it makes me sad the thought of them being lonely and isolated no one to talk to.

In a previous job making deliveries I would often have chats with elderly customers and always wished I had more time to listen to their stories I could sit for hours with a cup of a tea and just listen.

[MaryH75]

I am 9 months post TBI so early days but your description of feeling like living in a dream like state describes perfectly how I feelI sometimes feel as if im still me but living a completely opposite life and am trapped. X

[DL123 in reply to MaryH75]

Hello Mary thank you for taking the time to reply. Sorry to hear you are still struggling with symptoms after 9 months. Like you say it’s early days and hopefully for yourself as you move forward you can make steady improvement.

Sounds like we are experiencing something similar, I’m intrigued to know does it feel like your trapped in your mind?

i think the trauma aspect should definitely not be overlooked, for me personally in the weeks and months after my accident I use to get the sensation of falling, even if I was sitting or just standing and in a non threatening environment. It was horrible and even though I was aware that I was just standing upright and wasn’t going to fall it’s like my brain was playing tricks on me but it was to do with the trauma of my accident.

One thing I a haven’t mentioned in my story is that I had hypnotherapy done at hospital with a psychotherapist. And it was the most incredible experience ever I could talk about it for hours but don’t want to make this too much to read.

It was like an out of body experience was truly unbelievable. I was completely paralysed and couldn’t move, this was all done by the unconscious mind, my therapist put me in deep state of relaxation just through words only. And went through a series of scenes and then cut a long story short we replayed my life and the accident over in my head like whizzing through time. As I got to the accident part of my life my brain went blank and darkness like I had hit a wall. Mentally I had to find a way to get around that, back and forth, multiple times. This was to process the trauma.

When I came round I felt different like something had shifted and noticed over the weeks and months the fear of falling had gone my brain no longer thought I was constantly at risk of falling. The trauma had been processed.

I just thought I would share that with you it might be something you could look into that might potentially benefit you

[MaryH75 in reply to DL123]

That sounds an amazing experience that seems to have benefited you. I'm currently on waiting list but would be interested in knowing more. This forum is fantastic for making me feel not so alone at times x

[DL123 in reply to MaryH75]

Yeah it truly was an amazing experience, I could never do it justice through words, I wish for others to be able to experience it. Like everything in life it’s only when you truly experience something that you can get a greater understanding and appreciation. I remember coming home and couldn’t wait to tell everyone like an excitable kid almost.

It changed my way of looking at the human body, mind and brain forever.

I feel like I got lucky because I was actually seeing a pain specialist at the time through nhs and was receiving steroid injections in my shoulders neck and upper back for ongoing long term pain which was actually caused by holding tension due to the fear of falling constantly and not wanting to put my head in a downward motion I was basically changing how my body was designed to move (freely).

The pain specialist said to me that he believed something else was going on that this wasn’t a case of muscular/skeletal problem but more neurological problem. And he then passed me on to a wonderful lady who has helped me so much and I am forever grateful for her work. But I remember thinking to myself how would I have got here if it wasn’t for the pain specialist recommending me. If he would have said “there’s nothing more that I can do” then I would have not had that done and would have known no different. My advice would be to never give up and keep fighting for the help because at times it feels like you have to push and push for the help.

I agree Mary this forum is great and I’m glad it’s providing you with some comfort. I wish I had found it sooner as it may have helped me during the last 7 years to not feel so isolated and given me the feeling that I’m not alone there are others out there that can relate to my situation x

[MaryH75]

I always tell my children, brain injury no one gets it til they get it. It's a steep learning curve x

[DL123 in reply to MaryH75]

Absolutely spot on, it’s like the old saying “seeing is believing “ but you can’t see a Brain injury so people Assume that you are fine because you might look fine. But on the inside they have no idea how difficult things are.

With physical injuries like breaking a leg people can see that and then appreciate that you won’t be able to walk for a while but they know in time you’ll get better and heal. There’s no definitive timescale with brain injuries unfortunately.

I agree with you it’s a massive learning curve and I hope for your sake that your children can take on board what you are saying and kind of understand a bit about what you’re going through. X

[Shreds]

Dan,

Thanks for sharing your story and experiences. So many of the issues discussed in your thread are common to many of us and its a shame others cannot be compassionate just because they cant see the hidden disability.

Sorry to hear how your head injury came about. We all live on a knife edge every day and I thought I was invincible before my trauma. I have regained some of that way of thinking but its taken time.

As a fellow cyclist I can certainly appreciate your unfortunate accident.

Whilst I have never been convinced about the overpriced piece of polystyrene that are sold as ‘an essential’ (just check how they test them for BSI compliance - drop helmet onto an anvil from one metre to pass the test).

But shockingly also read the sad story of Kelly Catlin in the US who suffered a delayed effect of a crash even though she was wearing a helmet.

bbc.co.uk/sport/cycling/596...

Now I now do wear a helmet when riding some of my bikes (and if racing) because some of the organisations are forced to by their risk averse insurers although others (not racing) leave it to rider choice.

Even before my trauma (which was not cycle related), I try to fall in a way that protects my head.

Of course if you are riding a recumbent racing trike on the road which is stable having three wheels and a very low centre of gravity to reduce the risk of overturning and of hitting your head first, is less likely than being squashed by an unobservant vehicle driver who should not be on the road anyway (and there are too many of those).

Finally, as I see that Jill Bolt Taylor’s books have been mentioned, one other one; Concussion; Traumatic Brain Injury from head to tail by Kester J Nedd was recommended here a few years ago. As the book was cheaper than hiring a neuro to ask my many questions, I followed that one up. Its an absolutely comprehensive assessment of everything asssociated with brain injury ranging from GCS assessment and its limitations to how the billions of connections operate in the human brain and how they can find diversions around damaged areas in some cases. If I lived in Miami, he would certainly be my first port of call even though in the States he would not come cheap.

Its definitely a book that everyone should read to understand brain injury; I was almost sad to reach the end of it, but proud that I had persevered at my own pace to read all of its 549 pages plus appendices.

[DL123 in reply to Shreds]

Hello and thank you for your reply.

Appreciate your words and understanding.

I agree it’s a shame that others aren’t always understanding and compassionate. Some of it is to do with society and fast paced modern world and some of it comes to down to experience. Because they have never experienced it they don’t know what it’s like which I completely understand but if theres a willingness to try and understand + a bit of empathy then that can go a long way. I feel like 99% i am trying to justify/ explain to friends family etc why I feel the way I feel or why life’s difficult at the moment.

Thank you for recommending that book I am going to have a look into that. I have just finished reading a book called “ the brain and the story of you” By David eagleman I would recommend that, it’s absolutely superb and I didn’t want to put the book down. I have always been fascinated by the human brain but especially now more than ever due to my injury/trauma. It’s that good I am going to reread to take in even more information as I find I forget after a short while.