Hello! Here's my story.

[Suwariwaza]

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!

[Nackapan]

Hello.I'm usually on the Pernicious Anaemia forum.

My B12 level was slowly dropping unbeknown to me at the time.

I 2ax having problems with my sight then a series of falls .

One was particularly bad ax I hit my head hard on concrete.

Like you initially I thought I wax okay .

But I 3ax on the floor for alot longer than I thought stunned.

I thought I'd broken my jaw or something mouth full of grit and blood trickling from anywhere on my face.

I didn't go into hospital.

Even eventually drove home.

Sore ribs ,a swolen knee and face injuries I eventually got checked bt a Gp.

Later had a brain CT in a+e .

They thought I was on recreational drugs as my pupils were dilated .

I didn't know what wax going on.

My whole nervous system wrong.

Very low B12 was found .

J started B12 injections 💉

I tgen had a brain MRI

This wax in 2018.

4 neurologists coukdnt agree what was going on with me.

Migraines started.

Also I'd had an odd fall pulling me to the right then vertigo.

The only thing that eventually helped me wax B1w but it wax painful process 'rebooting ' me.

What struck a chord with me is you explaining that you can't cope with someone cutting into conversation.

I can't cope with that.

I get tinnitus and my brain feels so muddled.

I'm always saying

Let me finish or I will forget

I'm left with s vestibular disturbance and am very light sensitive. Artificial lights.

Also noise sensitive .

Initially coujdnt 4ven look at z phone screen.

Coujdbr bear the noise of paper scrunching a knife on plate.

Coukdnt watch TV for nearly 3 yesrs .

Felt like my brain was sizzling and felt really irritable.

These symptoms overlP with B1e deficiency symptoms.

The light and noise sensitivity stands our more from a head injury?

I know I'm different .

Fatigue still a problem.

Nausea comes with balance issues .

It can be a lonely place with an invisible problem.

Meeting friends inside a cafe a no go because of the lights .

I'm starting to try with a hat on .

Certainly couudnt go the the cinema yet.

I wear a brimmed hat outside and in shops with tinted glasses on.

I've still no help ftom neurologists .

I saw a neuro Opthalmologist but as nothing physically wring with my eyes I thought must be the nerve signals.

Or damage somewhere as text disappears from the right as I type.

He tried to take me down the mental health route which had been explored before by doctors as didn't have any answers.

I turned down several prescriptions ax knew I wasn't clinically depressed.

I think you are wise to share your story.

You are not alone.

Getting the right sort of help can be tricky .

It is best to talk about it .

Stress just exasperates the changes that have happened to you.

I was told at the end of a consult .

The brain is very complicated.

Very unsatisfactory at the time !!!

Felt so disappointed with no answers let alone an explanation for my symptoms .

Another suggested yoga

Another panic attacks

Made me withdrawer for a period ax they wernt getting it

They basically didn't know .

One mentioned the cerrabella possible damage .

Some lesions on the 2 brain mris .

Inflammation t2 flares.

But nothing sinister!

Words they used .

Hope your G.p appointment goes well.

A good idea to get a referral.

Just be prepared not all listen .

Also alot jump to a depressive disorder.

It's normal to get down .

It's normal to feel anxious about cognitive function.

Depression is different .

My self belief has strengthened.

You will find a way to get on better with your life.

Coping strategies.