To feel worried that I might get dementia one day

[NooNooHead]

I’m going to cut a v long story short but offer a bit of background for context... three years ago, I had a mild traumatic brain injury and post concussion syndrome which gave me a dreadful mental breakdown.

I’m about 75% recovered - certainly not completely back to normal as I lost the ability to see things in my mind’s eye (aphantasia) - and I am not as sharp as I was before. I’m sure my symptoms fluctuate with anxiety/ stress / tiredness etc and I get awful moments of brain fog, feeling spaced out and having a weird sensation of too much ‘space’ in my head (if that makes any sense!).

I actually had this odd sensation the other night when lying in bed trying to sleep, and l I can compare it to was a sense of feeling like I had lost all my memories of my past etc and all that existed was my internal voice and the thoughts about my present situation in the here and now.

On other occasions, I have woken up and felt like I had literally lost all knowledge of everything I had ever learned, but oddly enough could walk, move and talk ok - I just couldn’t recall any facts about literally anything for a couple of minutes. Similar to had times when my thoughts feel like they have slowed down so much, they are like wading through treacle and I struggle to find myself being able to think much at all.

My GP said a lot of head injuries and post concussion can include amnesia type symptoms but I am convinced these are more than that - possibly when my neurons aren’t firing correctly in my hippocampus (or something equally scientific sounding but is only a layperson’s theory!) and that I may be looking at some kind of dementia in my later years.

I’m sure I am being overly pessimistic about things and I know the brain can heal immensely after being injured but I can’t help feeling a lot of my on and off symptoms are indicative of something more serious that will only be revealed in time...

AIBU to worry about these things so much? Has anyone else ever had any symptoms like these and what did you find helped?

Sorry if this isn’t posted in the right place...

Sorry for all the typos and grammatical errors... just shows what my brain does wrong these days!🙄

Not quite the same as you, but I had a severe stroke a few years ago, in my mid 30s. I must admit I do worry about the increased likelihood of dementia.

I have lost lots of memories of my kids when they were younger - things like 1st steps and words, etc. I find it really upsetting. My working memory is poor and I do forget things easily. I have to write everything down!

Have you been offered any counselling? I saw a neuropsychologist for a few months and found it helped immensely. She gave me the tools to cope with the executive dysfunction and other problems I have been left with. 5 1/2 years later and I'm managing better. We joke about the stuff I forget and blame it on my 'stroke brain'! I also had CBT to help me cope with my anxiety about having another stroke.

I hope you continue to improve and try not to worry about something that might never happen - easier said than done, I know!

Thank you sparkli (love the username!) and so sorry to hear you had a stroke and the subsequent symptoms that you suffered after.

Crap, isn’t it? I find a lot of the time, even though I articulate what I am going through quite well, unless someone has actually experienced the same or similar things, it is very hard for them to empathise completely (which I do understand why), and I find it even happens with medical professionals like GPs. The last doctor I saw about it said he is thought amnesia was very common after a head injury but that there wasn’t much they could do about it... not very encouraging but it is a fact, I suppose.

I’m sure it will improve over time more, and I will be able to cope better with the odd ‘blank’ moments and feelings of helplessness that come with it. When I had post concussion syndrome for about 6 months after my TBI, I had what could only be described as ‘dementia/ Alzheimer’s’ type symptoms that included not recognising my own street, being unable to read properly any having very slowed down thoughts. I was also very sensitive to light, movements and sound for a while too.

I hope you continue to improve too, and I totally get the whole being upset about not remembering early memories of your DC... I have one very precious memory of my DD that I can just about recall, but because I can’t picture or ‘see’ it in my mind’s eye any more, it is little more than a fuzzy haze. It does upset me greatly.

Best wishes to you, I hope you stay well.

I did do some counselling with a psychologist and had a separate online CBT session with the NHS therapist (which covered how I felt about having a horrible drug induced movement disorder too...) but I didn’t ever see a neuropsychologist at all - although it was something that I did think about at one point.

Maybe I should give it a try.., I will see what happens.