carbon monoxide poisoning : would anyone know why my... - Headway

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carbon monoxide poisoning

celestitemorgan
celestitemorgan

would anyone know why my memory before brain injury remains perfect, but my short term memory is so bad?

thank you

44 Replies

Celest, here's a link explaining retrograde amnesia more clearly than I can....

google.com/url?sa=t&rct=j&q...

Best wishes, Cat x

cat3
cat3 in reply to cat3

.....meant to say I lost all memory of prior to and during my time in ICU after a brain haemorrhage, and my short term memory and word recall have been impaired. I do believe though that brain training such as puzzles, crosswords, wordfinding games and online games have produced great improvement over the years.

My long term memory was described recently by my daughter as 'spookily accurate' ! Strange business isn't it m'dear. x

deborah27
deborah27 in reply to cat3

My dear Cat, I have been away from forum for a while. Always think of you, you reached out to me at the very beginning of my Headway journey. Thank you for being there. X

cat3
cat3 in reply to deborah27

Hello lovely. Thanks so much for those kind comments. It was good to see your name come up the other day ! How have you been ? x

deborah27
deborah27 in reply to cat3

I had just resigned myself to accepting that this is the way it is. I have needed time to decide how to move forward and have a new quality of life. I was so angry and hurt at the dreadful treatment I have received and a seriously incompetent solicitor Cat, that I was in a really sad place. My medical records are still inaccurate, solicitor has wrecked my chance of another solicitor taking on my case and all the other things that are wrong. But, what to do? I am deciding that the world doesnt stop turning because my brain is injured, life can either go on without me, or I can try to participate. I'm still working on it lol. Im so angered by injustice, always been that way. I struggle to let things go, to know that I have little energy left to fight a huge 'machine' I am unable to sustain the energy required anymore. I have to stop thinking that 'they' have won. It's hard as we all know, but beating your head off a brick wall hurts!

cat3
cat3 in reply to deborah27

I'm really sorry life hasn't improved for you Deborah. On discharge from hospital when reminded my brain injury was mine for life I thought.... 'Fine, I'm alive !' But it still rankles doesn't it. And Covid has meant further isolation and and lack of other vital treatments.

I know the Springtime will lift my spirits ; hope it helps lift yours a little m'love. I'm always here if you need to offload.... xx

deborah27
deborah27 in reply to cat3

The spring will definitely help Cat. Thank you for being there, it is a great comfort. X

celestitemorgan
celestitemorgan in reply to cat3

Hi cat, thanks for the link, I will take a look. I will also try to find some brain training, I need it for sure. Thanks again. 😊

Hello Celest,

(Welcome to the forum by the way - everyone is really supportive here 😊)

I don't know why this is, but I do know that I'm the same. I can remember chunks of technical or legal stuff from work, or about leasehold issues, and it can sometimes just trot out with no effort at all - but my short term memory was very bad after the concussion - in a very weird totally absent way. It has improved - I noticed that I wrote down someone's phone number without a problem last week, and gave myself a nice mental cheer - couldn't have done it two years ago, without multiple goes. But often it's as bad as my 84 year old Mum's ( which is sometimes funny when we're together in our bubble - and sometimes not, considering the age difference...) The rest of the time now I think I'm just loads better at ways to make me remember things. Lots of lists, notes on calendars, diary, mobile, and alarms in Alexa. I have been told that having a routine also helps - because anything you can either do automatically, or record somewhere, saves more 'space' for remembering extra stuff (not got there quite yet though... work in progress) My smartphone has been a lifesaver though.

Like Cat says, I've used a brain training app, and just game apps, but I did read somewhere that reading novels is really great for your brain.... And if new reading is too tough, my neuropsychologist recommended re-reading novels as a good way to reduce the cognitive load. 😊🌸👍

I found your comments very interesting. I do wish I could still read books. I can't retain info from one paragraph to the next. I tried reading books for younger readers but it was impossible. I also tried what you said - reading books I had read before - but that didn't work for me either. If anyone has any further ideas on book reading I would be interested. The neuropsychologist I saw said that my attention skills have been affected and that also impacts the information that I take in. 🙂🌸

Hi Marnie, that's awful, so sorry you have to deal with that. It's probably not that unusual I think. I know the physio I saw said that he felt awful for people with concussion who couldn't read. Except early on, though I was reading, it was very lightweight predictable stuff. Quite a long way down the line I got a much awaited last book in a trilogy I'd been reading, pre TBI and could barely manage a page at a time, didn't help I was struggling with memory of the story lines from previous books of course - which I don't think had happened to me before. I was gutted. The advice at the time, was if I could only hang on for ten minutes without a headache or a fatigue crash, to just try five minutes, or less. I think I tend to read series of books I know, and find that much easier now than starting from scratch with a new author.

For me, say mid to late afternoon I invariably can't read for more than ten - fifteen minutes, if that - if my fatigue is noticeable, then nearer five still. What I can't work out is why I can read longer/ better at night in bed - I don't know if it's a function of being fed, rested and relaxed, or just being in a quiet, dark, calm environment makes enough difference? I think of it as freeing up band width... (Or a combination of both actually? )

The neuropsychologist told me that reading is very taxing cognitively by the way - hence it's value in ' brain training' I suppose.

Hoe do you manage on this site? I have awful trouble writing these posts sometimes I - am struggling now - keep having to stop. Suspect it will be easier later on though

Jen 😊 x

Hi. I am like you in that I function best in the evening. I am very disorientated and confused for the first two hours every morning, though I use a blue light therapy lamp and that does help. I manage on here by only reading and posting at my best times and forcing myself to stay away when I have cognitive fatigue. I also have to reread everything I read or write several times in order to correct comprehension and writing errors.

Not being able to read properly is very aggravating - I took a degree in English language and literature as a mature student and was an English specialist when I was a teacher. I have sometimes felt, (illogically,) that someone took away my most precious skills, especially since I used to have a really good memory and loved learning new stuff. I used to love learning and telling several new jokes a week and now I can't remember new jokes at all. I still remember all the jokes before my ABI, even those I learned when I was a child.

One thing I have found that distresses me is that because I don't make new short term memories like I used to, those memories aren't there to become long term memories. In the five years since my injury, I have very few clear longer term memories in comparison to previously.

Take care.

🙂🌸

Hi Marnie, the feeling you aren't laying down longer term memories must be distressing - so you aren't retaining things at all?

I have to edit posts after I put them up too.

I'm awful in the mornings as well, and the fatigue kicks in after the first couple of hours. When I'm managing it well ( haven't been since I had a fall three weeks ago though) I stop and do the 30 minute mindfulness body scan - it's like nidra yoga , not quite asleep , not quite awake - doesn't make me so fuzzy / foggy as actually going and getting a sleep in bed.

I can relate to having had a really good memory before like you, and I was a voracious reader. I went back as a mature student and did a maths degree , but dropped out of the PGCE. Before that, while my son way young, I worked in mainstream primary school as a special needs assistant (all the terminology has changed now I know). On the neuroplasticity thing - when I worked with children with speech and language difficulties, on the math /number part of their statements, and also using some Australian research practicing physical activities like moulding clay, cutting paper, and catching and throwing - their speech and language issues actually improved in excess of what one would expect from just maturity. It makes me wonder if we should be applying these principles to ourselves ? At the time it made me wonder why if the language area of the brain was the problem, why would we try and work with that, when another area might be developed without so much distress. The year before last, I found I could paint and get that feeling of absorption/concentration and being in the flow, that I missed from working - which was mentally very helpful, because that was part of 'me' that I missed. But I did feel that it must have had some impact on neuro plasticity as well - if only in being able to increase my attention span and focus on one thing for a decent amount of time?

Meanwhile I'm sort of hoping that being forced to do everything with my left hand because of my broken finger on my right, must have at least some cognitive benefit - it's certainly very tiring mentally! 🌸

I can only read a book if I exclude other activities and only stop for sleep. I don't remember it after though, and sometimes I'm at the end of a book before I realise I've read it before, which is very frustrating.

Now I'm willing to settle for the immediate enjoyment while I'm reading.I tried audible but that was totally rubbish. Just like 'watching' something on TV, I fail to pay attention to what I'm hearing if I get distracted, but I don't stop the tape so I have no idea how to find the place where I stopped paying attention.

It's still better than looking at a page and just seeing random letters so I guess it's an improvement.

Unfortunately I'm not past this with numbers - they still look random and meaningless unless I make a huge effort that leaves me wiped out. I can actually think of a number and my hand will write a different one and I cannot take it if people say numbers as well - it makes me 'shut down' and become a zombie.

I wish somebody could tell me how to work this variation of a brain.

Thank you for your reply, I have had some shocks with my memory. I left my cell phone in the rain, I lost all numbers and the phone was no use. My problem with getting a new phone was learning how to use it. The same with my old PC when it crashed. It weird, its like my brain remembers all my old programmes software etc. But on a new pc, it learning it all again.

I write back to front, thank goodness for spell check. I do read books, it took me a few years to enjoy reading a full page but I am getting there with reading. I will have a search for some brain training apps

Thanks again

😊

Hi Celeste - Yes, I was going to bed for the night, and leaving all doors unlocked - weird stuff.

The caveat with *:brain training' is yes you are likely to improve - but you are likely only learning to solve that particular challenge. I think I read something that implied that lots of different challenges are best, and that games are as good as brain training - but it is nice to track how you're doing, and I can't help but think learning anything helps - have you ever looked at the Duolingo app?

Jen x

Hi Jen. I haven't purchased any apps just yet because I get so upset with myself if I cant do something and I guess its also finding something that I would enjoy. Everything seems so difficult for me especially numbers. I cannot recognise them for some strange reason. Duolingo sounds interesting, it sounds like it involves words. I would enjoy that :) Thanks again

😊

Duolingo is just the language learning app ( the version with ads is free, so stick with that?) It just very gently repeats stuff. I was hopeless at languages at school, but I'd read that learning languages was good for the brain, and it felt good to try. I later tried a U3A language class and hit mega fatigue - the neuropsychologist said language learning is super heavy on cognition - so I was overdoing it a bit.

So sorry everything is so hard for you now, that's a tough thing to deal with 🌸 x

I had the same experience with a new phone. Even after having it for a year, I would still accidentally cut people off because I couldn't remember how to answer calls! 🙂🌸

The phone I had was about 7 years old. My new phone, I can make a call, just about. I get lost with it. My reading at the beginning became very clear because I used to read a couple of books a week. After suffering carbon monoxide poisoning. I found that I could only retain a couple of words. It was frustrating, but my love for books kept me going. I read in bed at night and I find it easier and better for me. because I cant seem to manage it in day time.

I had another MRI scan in December and the neurologist discovered multiple lesions, caused by low level carbon monoxide. I had been breathing for months and did not know.

I am reading books on neuroplasticity and find these books amazing.

I have read one of them about 5 times, slowly I am retaining a bit more.

I wish you well

😊

Thank you. Your story is encouraging. I hope your progress continues. 🙂🌸

Thank you, and you too 🌺

I have exactly the same problem. The article Cat recommended is one of the best I have read on the subject. All the best to you. 🙂🌸

Hi

Thank you

😊

Hi there are multiple types of memory, ie visual memory, language memory etc. Look up 'The Mild Traumatic Brain Injury Workbook' by Douglas J Mason. It breaks it all down and has puzzles and problems to solve for the various types of memory problems. Also look up Donalee Markus she has been designing brain training for brain injury for decades. twitter.com/StrongMindPuzzl...

Keep plugging away every day and you'll get there.

Thank you, I will check them out. Its so strange that I can remember right back to when I was a small child. yet now, I cant remember what I did two minutes ago. I appreciate your help 😊

Hey celestitie,

I don't really know the science behind it, only that what you describe is the most common way people struggle with memory after brain injury (long term is fine and short term is poor). Long term memory is stored in various parts of the brain whereas short term is held within the hippocampus and I assume that after brain injury there's some malfunction with either the hippocampus or the neural pathways that go from the hippocampus to long term memory storage.

The good news is brains are capable of developing new neural pathways, learning a new language or instrument is a good way to help strengthen the brains ability to create neural pathways, children are excellent and doing it but adults struggle hence the saying you can't teach an old dog new tricks. It is possible tk strengthen your ability to remember things and sometimes you just need to take a new approach I think. I write everything in the same note book at work and I know that I need to look at it periodically to check I haven't forgotten something. At first I'd forget to write things down or check the list, but after a people reminded me so often, eventually I developed a habit. Maybe this way won't work for you but there's other ways to get to the same conclusion. I'm hoping there are people around you who can help you but a system into place and eventually it'll be second nature. The point you made about reading rang true with me because I used to be an avid reader and have struggled since my TBI. Firstly, I think it's important to pay homage to who I used to be. I used to like reading and that's great but I'm a different person now. I'm assuming that you're not enjoying reading because you can't remember what you've already read, my feeling is, if I'm not enjoying something, why would I try to do that thing just because I used to enjoy it? Perhaps that's a pessimistic view but I'd beat myself up and feel bad I couldn't remember the plot and feel worse overall. Maybe one day I'll pick up a book and live it but in the mean time I've developed new past times like gardening. The old me never gardened but apparently that's what the new me likes now haha. My other tip, if you're keen to keep reading is always use a bookmark, you can get ones that clip onto the side with an arrow that tell you exactly which sentence you were on and when you pick the book up go back a page or two and jog youremeory about what's going on in the plot. Sorry for the long long post I was carried away haha.

Eve x

Good morning Eve. I too write things down, but I also use a recorder and I find that helpful. I have been reading several books on neuroplasticity and I am aware just how wonderful the brain is. I have read books my whole life. This was one of the things that upset me at first. That was, not retaining. However my love for reading pushed me into reading. Even if it was a few words at a time, I was not giving up. Now I am able to retain and find where I left off, another thing I forced myself to do. Now and again I find myself having to go back a page to refresh my memory. But reading was and still is my favourite thing to do.

I have multiple cognitive symptoms where it can take me a while to find my way around things, such as speaking with people here. Everyone is so helpful. I read reply's and have to read several times and may still forget to mention something. I can also not finish what I am trying to explain. Still, I'm a little fighter and wont give up.

Thanks for you advice and have a nice day

😊

Hi Celestine, memory is a strange process. It comes in three forms, long term, working, and short term. Long term memory is generally experience and learnt knowledge. Short term memory is in the here and now. Working memory is where the problems begin. This uses the here and now, and reference points from the past.

Memory isn't like a book, that stores information page by page. It is more like a computer hard drive. It constantly updates and defrags.

The other thing about memory, it is not like a video, capturing everything in shot.

Memory logs references, and in the case of long term, it plucks a reference, and creates an image around that. This is why witnesses can all see an identical scene, but yet report very different pictures.

Short term memory is a passive process, it is like a wide angle lens, taking in an enormous amount of information, deciding what is relevant and what isn't.

This is passed through working memory, like a filter, is it something we need now, or is it something (like the proverbial hoarder) that might just be of use later on.

It is usually this process that gets confused, and misfiles information, therefore we think that our short term memory is poor. As I said above, short term memory is passive, so we need to replace the working memory and keep prompts for long term use.

This can be writing notes, drawing diagrams/pictures, in the modern world where most of us carry a computer around with us, the mobile phone, we can take pictures, write notes, record our voice, and it has a calendar with alarms.

Often short term memory is used once then discarded, the working memory would normally take a screenshot and file it under definitely keep, maybe required, and used/delete.

We all have different levels of memory, and it's processes can be cultivated to our needs (I used to be able to document an hour or so meeting, word perfect, now I forget things in seconds, but I don't need to document meetings now, so why set that as the standard?)

Even after a BI we can cultivate memory, but it is starting at the beginning. We forget that we developed our memory skills from birth to the point we had our BI. This wasn't a conscious process, like our muscles grew bigger as we grew up, this wasn't something we decided, it just happened.

Some people exercised their memory and developed a phenomenal ability to remember minute details. Like a bodybuilder developed large muscles.

Most of us just went with the flow. As children we ran around, bounced off the walls, rode bikes at breakneck speed. Most of us grew up and didn't continue the same level of exercise, so when we suddenly have the thought of running for the bus, we are surprised how hard it is.

The same happens if you break a leg, we have to relearn how to coordinate all the muscles and build their strength. This isn't a direct comparison, but effectively we have broken our brain, and the same as breaking a limb, we need an aid, some of us, we will regain the strength, for others, we will need the aid for ever more.

Hope this makes sense.

HiVery informative thank you. I will have to read it many times to remember. But appreciate you taking the time to reply.

Thank you

😊

Hi, I am a carbon monoxide poisoning survivor. I am eight years down the line. I have learned so much over these years, not all positive, but at least i know what my body is doing, more or less. I haven't had appropriate care and have had to figure out so much on my own. I hope we could support each other, i have been in a dark place for a while. When i saw your post it gave me a little jolt and i remembered how special this forum is and how i wouldn't have coped at all without it. Stay connected.

Hi Deborah

My brain injury occurred in 2014. Sadly I too had no appropriate care. I don't know if it was because the ambulance who attended me never reported my collapsing to my GP. They assumed that I was drunk according to their notes, they wrote alcohol taken.

It has been the longest most frustrating years of my life. Fighting to be heard was hard, it still is. First MRI scan was misread, so from the scan, every doctor assumed that I was just depressed. Thankfully my recent MRI shows that it is carbon monoxide that caused my BI.

I too have been in a dark place myself Deborah, it sort of feels like I must be the only one. Of course that is not the case, it just felt that way. The other thing was, no one could understand why my CO alarm never sounded for several months. I know now that it was because the alarm doesn't pick up low level CO. On the evening when I collapsed the reading was on 335.

I had a wood burning stove fitted, a dangerous installation.

Every day is difficult as I am sure you know. I just keep on fighting :)

Thank you for your message I really appreciate it. Have a lovely day

😊🌺

So good to hear from you, so little understanding of chronic poisoning. Had same nightmare fighting for help of any kind. I could write a very detailed book!! Life has not been or will ever be the same. A new 'normal' and Headway. Love to you.

I call it the invisible injury because in a way it is. the after effects from CO are terrible. I have often thought of writing a book about my story. Maybe we should :) Headway are amazing and so helpful. I am truly grateful to them and the messages that I have had from everyone.

It is just so kind that people take the time to reply.

🌺😊

Same, in the early days I had no one. It is quite difficult to find someone to talk about specific issues. I'm so glad you are on here,.we all bring our story and our struggles, hopefully we can also be supportive. Great chatting to you.

I was wondering Deborah if you would know, does carbon monoxide attack the immune system? I have suffered from chronic pain since 2014 and I mean it is serious pain. I have searched but cant find what I am looking for. Cognitively it is hard for me. I am sure you have had the same issues finding answers it is so difficult. Carbon monoxide is so toxic, I have a feeling it does but I am not sure.

I loose balance my eyesight is effected also, gosh I have so many symptoms.

My GP thought I had MS. It was the neurologist who she sent me to, confirmed it was brain injury and not MS. Then I had the MRI scan to properly confirm it was carbon monoxide that caused it. It is not the best thing to hear. But it was a relief for me because I knew what it was but no one believed me. Knowing is better than not knowing for me.

I am glad you are on here too. Have a wonderful evening

😊

I experience everything you describe. The pain side of things is quite severe, I have nerve damage and a thing called paresthesia, burning and tingling pain. I decided not to take prescription drugs, which of course is entirely personal choice. My symptoms are similar to MS, but also can mimic Parkinsons symptoms too. Short term memory dreadful, organisational skills rubbish and often confusion is what I deal with on a daily basis. The overwhelming fatigue, ridiculous body weakness and balance problems too. I have read and researched, written notes and diaries, notes everywhere.... I still teach. I go to bed when I get home, I have to get private taxis. I am determined to try to live this new life and not completely sink into a dark hole. There can be delayed sequelae with carbon monoxide poisoning, symptoms getting much worse after exposure stops. I would really like to chat with you, perhaps we can exchange information as support.

Good morning Deborah. Everything you mention here, I suffer the same. I also have problems expressing myself, word finding. Words become jumbled. Numbers are a huge problem for me. I cannot recognise numbers. Sometimes it feels like my head is overly stuffed with cotton wool. That is a weird way of describing this, but I cannot think of a way to describe it. The muscles in my arms and legs twist and spasm.

I do not take prescription drugs either. I have always lived a holistic life. It is difficult especially the severe headache that comes with CO poisoning and I am sure you have this too. I had done so much research on carbon monoxide. I had it stored on my PC. Then my PC crashed and I lost the lot. I was devastated.

I got myself a new PC. When looking at this unfamiliar screen on my new PC I cried because I found myself having to relearn how to use it. My brain I suppose was just happy with the layout of my old computer and all my old familiar things that I recognised, such as reminders were gone. Like you, I am determined to live this new life.

I have spent so many years searching, hoping to find someone who would know from experience what this is like. I would really like to chat with you too. I am sure we can help each other in many ways.

Have a lovely day

😊🌺

I feel as if angels have brought us together, I have hoped for so long, to find someone. Would you like to chat sometime?

Yes I would love to chat. How do we exchange numbers? Do headway have a way for us to do this? I will take a look around the site. I am still trying to find my way around. I believe in angels too 😊 I will get back to you if I can find any info. Or if you find it before me let me know 🌺

I'll private message you my number.

I'm afraid this is a really common effect of BI. I am able to recall a lot of detail from my early childhood but sometimes struggle to remember something someone told me yesterday :)

celestitemorgan
celestitemorgan in reply to lcd8

Hi. It is difficult isn't it. I was only recently and properly diagnosed. I began to notice that because I was asked so many questioned about my past, and I could remember so much. It made some people question my BI. That is the most difficult part of this for me. Having to continuously remind everyone that it is my short term memory that is bad. Still, I am getting there 😊

Agree! A lot of people don't seem to realise there is a difference between short and long term memory.

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