First of all. I should say that I'm very fortunate not to have more serious issues following my accident. Many have much more to deal with than I do.
About 13 years ago, I was knocked off my bike by a car and hit my head on the road. I was lucky to have been able to break my fall to some extent, or I may have had more serious injuries. I was cut and grazed but able to get up and talk to the driver, and then to a couple of passers by who stopped. I was able to tell them what had happened. But then another couple stopped to ask, and I realised I had no idea what to tell them. I was completely blank. I was totally aware of the present moment, but couldn't recall even the beginnings of an idea of what had happened.
They called an ambulance, and as I couldn't tell the paramedics what had happened, the ambulance took me to the local trauma unit. In hospital, my memory of the accident started to come back bit by bit and I was discharged.
But I still had quite marked problems with my memory. I'd be talking to a good friend and realise I didn't know their name. I'd be having a conversation and suddenly not know what I was saying, or even what the conversation was about. I'd have to ask people to tell me. If someone asked me a question and continued talking, I'd have to wait until they stopped saying things before I could start to think about their question, if I remembered what it was. This kind of thing affected me a number of times each day. It was particularly hard if someone interrupted or interjected a question. Somehow it would knock the whole conversation out of my head.
Or I'd be walking somewhere familiar and suddenly not know where I was, or I'd go to visit a friend I visited often and walk up and down the street looking for their house, then discover after phoning them that I was in a different street entirely.
I found I was super-sensitive to noise and distraction, which made me reactive as well as unable to take things in or process or respond as I'd been used to. This really affected my sense of self. Environments I'd previously enjoyed became situations I couldn't cope with. I found people rarely really understood. Even if they made kind noises, they then forgot. I became self-conscious about how I came across. I felt lonely and frustrated.
Many of these things improved over 9 months or so, but they didn't go away. I think partly I just got used to them. Some of them still affect me daily, as well as some degree of depression, anxiety and fatigue.
I can work, and do everything that's required of me to a high standard, but mental tasks are just much more tiring. I can focus, but I really need to cut everything else out quite rigorously to do so.
I think the biggest impact on me has been emotional. My accident happened after a very distressing period when both my parents passed away and my brother developed serious mental health issues and self-destructive drinking habits and behaviour that, over the course of a couple of years, stretched us all beyond our limits in terms of what we could cope with.
So, when my accident happened, I could kind of understand that none of us wanted another thing to have to deal with, because I felt like that too. Neither my sister nor my step-mum were around after the accident (they lived elsewhere), but neither of them seemed to want to know. My sister's reaction was emphatically, "Yes, but you're fine." I guess I'd been discharged from hospital, so I must be fine. My step-mum, even though I'd explained to her my difficulties with conversations, would get impatient with me when I struggled if she cut across me or interjected a question, and even indignant if I asked her to let me finish or even if I just lost track of what we were talking about and asked her to remind me.
Even though this is years ago, it's still kind of how things stand. According to them, I don't really have anything wrong with me, so I'm just being difficult or strange or something. It hurts because they're important to me, but I don't have the same relationship with them that I did. At some point back then, I remember my step-mum saying to me, "I always thought you were really strong!" That was never totally true, but it felt like, as soon as she saw a chink in that, she couldn't put up with it.
I sometimes wonder why I didn't look for more medical help at the time, except that I felt very fragile and vulnerable, and I think in that state, people are often very prone to suggestion. I didn't feel myself, or feel able to function the way I was used to, and I didn't know initially whether it would get better or get worse, so I didn't know what it meant for my future. It felt a bit like the ground had gone out from under me. But the message I was getting was that there was nothing wrong with me, so it felt like I was just supposed to get on with things, and I've been doing that ever since.
I did once talk to my GP, who agreed to send me for an MRI and talked about a clinic at King's College London I could be referred to, but when nothing showed up on the MRI, nothing further happened, although I understand there can be functional changes in the brain after head injuries that aren't visible on MRI.
I recently did some cognitive tests (by chance, because I'd been part of some Covid research). Then I took another one just to check the findings. [As background, I went to a selective school and took the 11-plus, and also later took a MENSA IQ test, on which I scored 137. Both put me in the top 2% of the population across a range of cognitive abilities.] On the new tests, I was still in the top few percent for some things, but right at the bottom of the scale for others - and these things matched exactly the things I've found difficult or impossible since the accident.
Those recent cognitive tests are the first time I've had something objective to point at to say, "Look, there's a difference!", rather than just trying to get people to understand my experience (and failing). That's been the spur to think about looking for help, if there is anything that can help after all these years. I don't really mind about being a bit less clever, but struggling with conversations is something that affects me daily in social interactions and my sense of self.
I guess that's what's led me here. I've made an appointment with my GP, and will ask what they suggest. Maybe I'll ask for a referral to, I guess, a pschologist/ neuropsychologist(?) Maybe have some tests and see what they can suggest. Perhaps even just some counselling to help with the emotional side, and maybe accepting what can't be changed.
I've actually found, even just looking for some information on the Headway site, I feel kind of scared to even start looking into this. I don't know, I guess because of my experience before - being made to feel like I was making a fuss about nothing, and having people impatient with me struggling, or interpreting it as something different.
I think it would be helpful to hear a bit about other people's experiences and any advice coming out of that.
Thank you!
Written by
Suwariwaza
To view profiles and participate in discussions please or .
Thank you! It's been very helpful to read the responses over the last day or so. I haven't had a moment to respond until now, but this is the first time I've had people say they recognise what I'm talking about, which really feels important to me. Like I can relax a bit, people understand.
It sounds like I'm fortunate I don't have as much to deal with as you, but I recognise the challenge to self-belief in the face of people not "gettting" it. It's hard feeling that people sometimes just think you're being difficult, or a bit strange, when actually you just can't do something. Some version of "Let me finish or I'll forget" is something I often find myself saying to people too. Sometimes people respond well, sometimes not.
You have post concussion syndrome (PCS), I'd say. Your story will be very familiar to most with it, including myself. I don't have any silver bullets for you unfortunately. Seeing a neuropsycologist may help, but it might not. Talking to people on here helps. There was some great material on the subject but it was taken down. Bottom line is you likely have damaged axon links in your brain and that doesn't show up on a NHS MRI. Keep going, slowly it might improve.
I'd thought it might be post concsussion syndrome myself, but didn't want to "self-diagnose". When people don't really believe in your symptoms, I'm not sure a self-diagnosis would go down any better, but it might be helpful to have a diagnosis from a health professional, if only to say, "Look, it is a thing!"
If you know what domains are especially affected then you should be looking to target activities to retrain these functions.
Doctors don't usually understand much about this and the overall provision for rehab tends to be very poor.
Have a look at BrainHQ and see if this is something that you can work with.
The objective is to relearn some or all of the lost functionality using the same technique for how you first acquired it; ie repetitions to consolidate. You have to put yourself back through school to some extent and this can be quite distressing at first.
Tactile activities also help to reimprint key functions. Drawing, clay modelling, and Qi Gong are especially useful.
I have had some good results with VR applications. 3D puzzles are especially challenging at first. Also Optokinetics if you experience and dizziness or other vestibular problems.
The only way to move towards recovery is to take matters into your own hands and not wait for medics to suggest anything beyond doing some crosswords!
It's a slow process that requires daily attention.
If you have played around with AI at all that is a good way to get a protocol designed based on your symptoms. ScholarGPT is quite well trained for this type of thing.
It's interesting that you mention 3D puzzles. On the cognitive test, I was very good with some 2D pattern tests (picking the right option to match a given pattern once rotated), but then with basically the same thing in 3D, it was like asking a toddler to do algebra. I just couldn't see it.
One thing I've noticed in everyday life is I can no longer give people directions. Even if it's somewhere nearby that I know I could walk to with no trouble, I just can't picture the route to tell them how to get there.
Yea I remember that one. It can improve with exercise. I used to be a motorcycle courrier way back in the late 80s and had a very detailed knowledge map in my head of most of London. I found after my injury that I couldn't remember even very simple nearby routes at first.
3D jigsaw puzzles (Puzzling Places on a Quest 3) really helped to reconstruct the function over time. They're also fun to do with some great locations! I think the immersive aspect of them helps too.
For the most past I am ok with directions again now.
VR is now thought to be a gold standard for vestibular retraining too. If you have dizziness sensations then these can help alleviate those too.
You can do them on a standard 2D screen but having a full three dimensional view seems to be better.
I've started some of the brain training on working memory. I thought I was doing quite well for a couple of levels, now it's got a bit harder and I'm making more mistakes than correct answers. I'll keep working at it!
Yea, take it easy they are quite challenging. When I was doing them daily, I'd take a short nap after each session to give my brain the chance to consolidate the 'new' skills.
NSDR is a very good way to allow the brain to rest.
If you think about how kids learn and how much they sleep, it suggests that sleep is a huge part of the learning process so give it a go and see if that is useful.
All the same for me, I've found fantastic help on here, moreso than from the nhs. People on here know exactly what you are going through. I have found that friends, family, GP etc don't understand the effect on your brain. It was 4 months before I got any proper help, and that was only because the GP was not giving any more than paracetamol and I asked to see someone who knew about brain injury. I went to an appointment at a Neurological Unit, and was taken straight in for a month of test and examinations. They were brilliant and helped a lot, on discharge from there I went to a local hospital for Occupational Therapy which, I gave to say was like taking 10 steps back. It delt like they didn't really know what they were doing. Since then I have really been left in my own and tend to go on here for advice. Don't feel alone, just dip in and out of here as needed.
Yes, Su - it's another Cinderella condition. Looking on line, PCS seems to be pretty much ignored because the assumption is that everyone recovers after 6 months. Or nearly everyone. But it ain't so.
I am v lucky because I am seeing slow but evident improvement after four months (plunged down 13 steps). But I take dark glasses everywhere, and I put them on before I begin to feel dazzled. The tube and central London are horrific. I have a fold up stick for when I get dizzy. The short term memory stuff is very irritating. I turn bottles of pills upside down to remind myself I've taken them. In conversations I just tell people I'm still suffering from concussion, and they're generally v patient.
I'm glad you're seeing progress! And that people are patient with you.
I'd seen the same information about PCS, and yes, it does kind of make you feel like you won't be believed, as it's been too long, although I definitely think I fit the picture.
Hi Sucwariwaza. Wow, interesting tale! I’ve never replied to anything on here but my dad recommended it. Yours is the only post I’ve read, and I found it interesting. My brain trauma was a lot more immediately serious. I did it rock climbing and was placed in medical coma in France. I couldn’t walk, eat or talk after. Now I’ve improved so much, running marathons, doing gym, even wrote book. I find I’m exceptionally good at some things, like games & chess, but like you say awful at others. Navigation, remembering people’s names etc. That’s the weird thing about brains. They’re so complex we just don’t really understand them. People will sympathise but most will never know. Some of the greatest brains ever have been disabled. Look at Einstein. You’re different. Great is some areas? Terrible in others. You’ll adapt, the world will adapt to you.
It sounds like you're approaching things with a very positive attitude.
I find that some things don't affect me much - like not being able to give directions. I just say, sorry, I think you need to ask someone else. It's not really a problem. And I can find places for myself, I just can't picture how to get there in advance, but I know which way to set off and I know each step as I come to it.
But the problems with short term memory - being able to hold things in my mind in order to do stuff with them mentally, at the same time as filtering out or just registering other stuff without it getting in the way (like people saying other stuff) - those affect me daily in ways that are difficult, because they affect my interactions with people, and people generally don't understand, and even get impatient with it. I like to talk to people, but it can be difficult.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Hello, problem after 2 car accidents (weird question, sorry)
A Question...?
Having trouble coming to psychological terms with a brain injury. How do you do it ?
Am I going mad?
6 months later..... 
