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  1. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    Hi

    Like a lot of us I suffer from cognitive impairment across many areas:

    • Short term memory/recall
    • Concentration
    • confusion/brain fog
    • Coordination
    • Sound and light sensitivity

    Over the last week I’ve noticed something new associated with memory and I wondered whether anyone else has had this (I.e. is it normal for ME).

    I get the normal short term memory lapses, problems with word recall etc. This happens every day and waxes and wanes throughout the day...some days hardly at all, other days much worse. This normally is resolved and manageable with memory aids and Mrs and Master Sloth reminding me of things. I class this as normal ME moments.

    I’ve never had any problem eventually recalling something either when I’m reminded or later during a good patch.

    This last week though has been different. Here is an example of what illustrates maybe 3 or 4 complete memory absences:

    I was at work in a meeting ....the conversation moved to a subject that crosses over to my area of responsibility and a new piece of work emerged. A colleague turned to me and started discussing some analysis I had done. She inferred I had done some work, sent it to her and discussed various insights and questions I had on the data.

    I just looked blank and thought “I don’t think so...what are they going on about?’

    I said as much later and was sent an email that I sent to her 4 weeks ago with a massive piece of work, analysis and recommendations in it.

    It was clearly from me with email signature, my turn of phrase etc.

    I just can’t ever remember discussing it, doing the work (it’s nearly a days worth of solid work) thinking about it, writing the email etc. It’s like there is nothing in my memory at all.

    I still can’t recall anything about it. This has happened now quite a few times over the last week and a half.

    Is this normal to have something completely erased from ones memory? I have complete clarity of recall on everything else.

    This is the first time this black hole memory loss has happened over the last 7 years since I’ve been sick.

    Anyone else have this?
     
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  2. Wonko

    Wonko Senior Member (Voting Rights)

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    For me it's normal, things that looked like absence seizures were one of my initial reasons for seeking help 20 odd years ago.

    I could lose most of a day, or a few minutes.

    Without environmental changes, or being told about things that didn't happen as far as I was concerned, there was mostly no indication that memory loss has occurred.

    Even when knocked unconscious, or under anesthetic, I am aware that time has passed, with this i have no idea, unless I've moved, or it's gone from day to night etc.

    As I am no longer around people much I have no idea how much, if at all, this is still happening, I know it still was a few years ago.

    I have no idea if this is anything to do with ME.

    I was initially suspected of idiopathic temporal lobe epilepsy but it was decided that it was non epileptic in nature so all investigation stopped.

    ETA - oddly it started around 6-8 years since onset.

    But, as I say, it may not have anything to do with ME in my case.
     
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  3. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    That’s sounds pretty difficult to live with . I guess I’m lucky that Mrs Sloth is there to take the piss,out of me when I forget something.

    So is this like an absence for you ...or have you discovered that you’ve been doing something during the period of absence?

    I appear to have been quite lucid, and productive during the eight hours of missing stuff?
     
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  4. chrisb

    chrisb Senior Member (Voting Rights)

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    It's a difficult one is this. I suspect that many of us spend so much time on our own that tthere is nothing to challenge the recall that we have. And we wouldn't remember the things we had forgotten anyway.

    I do vaguely remember having a discussion with a doctor about memory problems and deciding that it was probably not recall, but failure to get events into memory in the first place, but I do not now recall the events that I had in mind.

    I'm sure you will have tried all the tricks we use to prompt the memory such as trying to recall events leading up to the missing day, and reconstructing events from there. Sorry I have nothing useful to add-but thought it might be better to say something rather than nothing.
     
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  5. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    Yes thanks @chrisb ..perhaps it’s been going on for longer than I realised and I’ve only been rumbled at work recently? The last event only happened yesterday but I think I will go back and try and work out what my day was like, look, through my other emails, diary’s etc.
     
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  6. Wonko

    Wonko Senior Member (Voting Rights)

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    I lost a successful and growing business because of it.

    It's a total blank when it happens, not even that, there is no gap as far as I am concerned, even minor discontinuities tend to get ignored unless looking for them. Seems to be inbuilt to ignore things that don't make sense unless they make an impact.

    It is rare to discover what I have been doing, I am not unconscious or anything like that, I am, as far as I can determine, operating completely normally, it's just I have no memory of it during those times.

    It's not something you can ask about when a gap is suspected, and most of the time there are no reference points unless you are around the same people more or less continuously.

    That's not been something that's happened often in my life.
     
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  7. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    This is why cognitive stuff is so much worse than the physical for me ....it’s the unease it brings with it. I’m sorry about your business...this thing doesn’t stop does it?

    Perhaps it’s better not to know what we’ve been up to...although the control freak in me is now thinking about getting a nestcam or similar to be able to rewind my life to see what I was up to. I’m finding myself increasingly left on my own at home as Mrs and master Sloth do more and more things without me....it’s making em wonder.

    The strangeness of seeing some work that I had done but couldn’t remember is quite difficult to describe ...I read through it and started agreeing with the conclusions and then challenging and critiquing it before I realised it had been written by me.

    I suppose it’s reassuring I can still produce work to a standard even when I’m not apparently there.
     
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  8. TigerLilea

    TigerLilea Senior Member (Voting Rights)

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    @arewenearlythereyet If this happens again, you might want to go in and have a talk with your doctor. To write a "massive piece of work, analysis and recommendations" and have a discussion with a work colleague about it, and then having absolutely no recall later on even after being shown the email outlining everything, doesn't sound like ME to me. You aren't just forgetting a minute or two of time. That is a serious amount of time to have absolutely no recall of.
     
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  9. Wonko

    Wonko Senior Member (Voting Rights)

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    As best as I have been able to determine it is you, it's just the memories aren't being stored (which is why they were 'investigating' temporal lobe seizures).

    It's not likely you would do anything out of character.

    The worst that's likely to happen is duplication of effort, because you don't remember you've already done something.

    My business was sunk because i didn't remember part of a meeting when it had been agreed I would dispose of a room full of old mainframes. I didn't remember that part of the meeting so consequently I didn't. This had knock on costs, to the client, and inconvenienced them considerably.

    Word got round. End of business.

    I had an associate, who was at that meeting, who said sod all.

    Just assumed I was getting on with dealing with it.

    So it can go wrong, it can have consequences, if you're not prepared for it, but most of the time it makes no odds, remembering stuff, or not, makes no practical difference to life.
     
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  10. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    Thanks :) I thought the same thing , but before running the gauntlet with the GP who is keen to send me to the clinic for more GET I thought I would see whether others had something similar. It’s so difficult to discern whether your new symptom is an exciting new ME development or something else you should get checked out.
     
  11. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Deficiencies of vitamin B1 (thiamine) and vitamin B12? They can both cause severe memory impairment.

    Statins? These can cause global transient amnesia.

    I've no doubt dozens of drugs can cause memory issues. Check the Patient Information Leaflet for any drugs or supplements you take. It is worth checking the American version of Patient Information Leaflets as well as the British version. Sometimes the US website has more information than the UK website.

    British : https://www.medicines.org.uk/emc
    American : https://www.drugs.com/drug_information.html

    Hypothyroidism can also cause memory loss.

    Eating more fat can improve memory :

    Code:
    https://medium.com/feed-your-brain/how-eating-more-fat-can-improve-your-memory-5b1331a8883d
     
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  12. duncan

    duncan Senior Member (Voting Rights)

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    My memory has been on an inexorable decline for years.

    My Lyme doctor prescribed an anti-viral used for memory issues in Parkinsons and MS patients, but I had a terrible reaction to it, and I tolerate most drugs; I lost an entire day on it because I could not keep my eyes open and kept wake-dreaming. My ME/CFS doctor is putting me on an Alzheimer's med.

    I am not hopeful.
     
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  13. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    Yes hypothyroidism occurred to me too ....mainly because when I was tested during diagnosis years ago my TSH was a little in the low side. I doubt I’m low on b vitamins due to the regular supplements I take due to folate deficiency (due to other meds I take). I certainly haven’t changed anything I take for around 2-3 years.

    Have you ever had complete deletions of memory @Arnie Pye ?
     
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  14. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Yes I have. I had a severe GI bleed which went on and on and on (for several years)... I suspect I ended up with very low blood volume and various vitamin and mineral deficiencies. I improved with high dose B vitamins and I also took prescription strength iron supplements for a couple of years. I'm also hypothyroid, although not severely. I can't say which thing(s) improved my memory. I think it was a combination rather than just one supplement. This all happened quite a few years ago now.

    Eating more natural fats has been a recent experiment and I think it has improved my brain function and memory too.
     
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  15. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @duncan

    Sorry to hear about this; hope it's not Alzheimer's!

    Take care.
     
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  16. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @arewenearlythereyet

    I don't know if I can add anything, except to include some of my examples:

    I forget words; do not badly with reminders, but for years have recounted something I've read to my husband, who then tells me I told him about this same reading 6 months ago. I've done this several times.

    I am very vague when trying to recount interesting news items...can't recall much of the details.

    I have bought the same book more than once - maybe 4 or 5 times.

    I can't recall simple sequences of directions.

    Slightly complex new learning can be very problematic.

    I forget things like have I turned off the kettle, moved the laundry to the dryer etc.

    I've left the stove top on more than once.

    I have heard that if you forget where your keys are that's OK (except you can't find those darned keys!); it's when you forget what keys are for - that's a problem.

    :)
     
  17. Alvin

    Alvin Senior Member (Voting Rights)

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    I get this now and then, seems to come and go, not as bad recently though the other cognitive issues have gotten much worse. That said it could be a comorbid condition.
     
  18. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    @arewenearlythereyet

    I do have memory issues of the usual sort ( word finding etc), lack of clarity in thinking, but had an experience a week ago today that threw me somewhat, not so large as yours but unusual for me.

    I had an appointment with my ME doctor who first checked how I was doing with supplements. We covered the one he had introduced last time, and then he asked me about another he had advised. I had no recollection of it at all, felt very confused, embarrassed etc. He was working from his notes or I might have thought he was thinking of another patient because I have never been conscious of totally forgetting something like that.

    Not only had I not been taking it but I didn’t remember buying it or even recognise its name. It was a blank. When I got home I searched through my supplement basket, found it and it had been opened, and I found the order on my Amazon account. I counted out the caps, 56, so I had taken 2 a day for 2 days. Then I stopped. I had no memory of that.

    I did actually develop a severe chest infection at this point needing 2 lots of antibiotics to get on top of it, and I decided to stop supp 1 till on top of the infection but supp2 never reappeared in my mind. I have put it down to illness on top of ME for the time being.
     
  19. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @Binkie4

    I forget new routines, and revert to old ones - that includes taking new supplements.
     
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  20. Rosie

    Rosie Senior Member (Voting Rights)

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    @arewenearlythereyet My brain symptoms in ME are an inability to learn and retain information. I can no longer take in a lot of information, whatever I do learn I forget quickly. Also I find I need people to remind me about something so that I can actually remember it. So I do have difficulty retrieving stored info as well. I get mentally exhausted quickly and I can feel my brain shutting down and wanting to rest.

    Just the other day I asked a question on the forum and I have a vague memory that I asked this same question once before on the forum and I think I was given an answer by someone. This is what I mean by not remembering even though I had learnt it. Very frustrating.

    I understand your not wanting to see your GP, I wouldn't want to either but you do need to see a doctor about what happened. Although I have memory problems I don't think I have experienced anything like what you experienced.
     

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