Lost Time

For the past year my daughter has had unnerving " lost time" experiences..
She' s adamant that she dosnt fall asleep but is unaware of time passing : so it could be that 40 mins or 2 hours has elapsed and she simply has not experienced it. Checking the time has been upsetting and worrying . She's scared that she's losing it.

This does seem to be " a thing" in ME -
from someone else's twitter post ( which I didn't save - doh) , but it's something of which I was not really aware.

Has anyone else had this experience?
Does this symptom relate to severity ?

Given research in Alzheimer's and Parkinson's re signalling , metabolism and some dopamine similarities it might be something worth researching in ME if it is " a thing" ?

 

For me it's very common.

It was disturbing when I first noticed it happening myself, it prompted my first round of medical investigations, 3 or more years, through the NHS system 2 and a half times before i gave up on them, but that was 3 decades ago.

I got used to it.

 

Do you feel there's any pattern to it?
Is it when you've overdone it / are in a worse patch ....
Or is it completely random ?

 

Pretty much random as far as I know.

 

I've had it for many many years, just on days where I'm tireder than normal and actually was most common when was less severe and took a shower - or most noticed it because I'd come out thinking I'd been 20mins and 45mins had gone and I was late, plus it foxed me as I'd done exactly the same routine so really thought it had been 20mins. I can definitely lose track of time for hours in the past with company or conversations - literally being hours offf (which seems so weird given the exertion on the body, but I guess that was part the thing, you were starting off already in 'overtime'/overthreshold so none of the usual measures others might notice hit home).

I've basically spent the last decades always with clocks around me and when I worked would have TV that had a clock on it, and set reminders for everything - particularly if cooking something, as if I forgot to the amount of actual calculations I'd have to do to even guess how much time something had been in for when I couldn't tell if it had been 4mins or 20 (TV programmes were thankfully quite good at this as you could see how many minutes it could rewind)

I often couldn't be sure as a guess how much time has elapsed for something because of this variation where time passes at different rates depending on whether my body is on go slow, hyper, in PEM and so on (and even there it isn't predictable as I don't think when I'm overexerted and feeling more hyper I'm more on it, and maybe even more off with time). I found it interesting reading about clock cells/cell clocks and probably sounds bonkers to proper scientists but felt like I wondered whether our weird cell things interacts with that or something.

 

I also experienced something similar as what @bobbler has explained and use the same coping strategies. I’ve now put it down to a part of the reason why I would confusingly nearly always run late for appointments when I was mild. My usual unguided 30 minute get ready routine became 1 hour without me realising I was taking longer.

Although it happens to some people with ME. I've yet to see it mentioned as a symptom. I have come across loss of time perception within head/brain injury literature and read how unnerving the person finds it depends on the severity. The term might be called Dyschronometria.





[Edited for clarity & grammatical errors]

 

Thanks . Daughter thinks it's random , but it's not been happening often enough to really be sure of that.
Frequency seems to be changing though.

 

Thanks. It would be good to know how common it is and if it's a feature in conjunction with other things.
Brain fog is getting worse at moment too , but that could be entirely coincidental.

 

Personal experience I'd differentiate between a) cognitive failure where the the usual appreciation of time passing is missing, this is a sort of counting error. Somewhat more distressing is memory gapping where there's no connection between location/actions in a before and after sense, it's not the common experience of walking into a room and forgetting what you came there for, but the complete loss of sequence with a following sense of disorientation, not just "what did I come here for ?" but "who/where am I ?"

Unlike other symptoms I haven't found the latter has change much over 30+ years, although I'm more used to, it is however always been relatively infrequent. In terms of sensation in some ways I find it approximate to migraine, and though I've never sought to pursue it with the medics, in my case I'd consider absence seizure epilepsy a possibility - although ASE is not acknowledged as anything other than rare after teenage years. In a young person probably should warrant discussion with GP.

 

I experience a sensation of time speeding during severe PEM. I might look at the clock and think, wow, 5 hours passed. I don't find it incredibly jarring though. I wouldn't describe it as completely "losing" periods of time.

 

I lose time too, but it's always featureless time. I might be unaware of whether I've made toilet visits, but I don't fail to recall things that require more physical or cognitive effort.

If it's this loss of 'empty' time, I just call it going into standby mode. I suspect it's not uncommon in people who're chronically unwell or extremely tired, such as someone taking time off after a run of 12-hour night shifts in a hospital.

 

I'd forgotten about this—yes, it's another phenomenon. For me it's different to the more routine loss of time due to being in standby mode during rest, because that's not speeded up in the same way as it is in severe PEM.

 

A really good description. Hopefully I'll remember "empty time" and "standby mode" as useful descriptions.

One of the reasons that I gave up work was because there were parts of the year when I had to do a series of days where I worked all day (admittedly with a late start) and couldn't leave work until roughly 2am. One night I was driving home and "came to" while speeding towards a brick wall bordering the road. I'd been struggling with pain and other symptoms for ages, but that was the last straw for me.

These days I sometimes have "empty time" at nights when my insomnia is bad. I tend to spend this empty time reading on my computer or watching undemanding videos on Youtube and there comes a point when a metaphorical light switches on again and I'm back with the world and I'm tired enough to go to bed. Occasionally I've started checking my internet history to see what I've been doing. I've usually been reading articles or watching videos, and I do remember what I've been doing when I've been reminded by my history, but without that prompt my night time has just been a blank.

 

I've suffered from something like ME for 40 years now.
About 10 years ago, my episodes of brain fog were getting worse and more frequent. Around that time, I experienced an episode of winding up at a (familiar and frequently visited) store that is a one-hour drive away, with no recollection of the reason for being there and no memory of driving there. Friends comforted me with assurances that they often don't recall their drives. I would also get lost in thought for hours at a time.
About 5 years ago, I lost my "executive skills" during a span of a few days or less. My life has been an utter disaster since then.
My brain is really slow, and I get lost for hours while writing/rewriting brief emails or reading online. I'm always shocked by how much time has passed. I cannot rationally explain to anyone where those hours go.
I also cannot seem to connect the events of one day to the next. My perception of life is completely fragmented and disjointed.
I wish I knew if this devolution was ME/CFS-related or not.

 

Sorry for going off-topic. You may benefit from a neuropsychological assessment test that evaluates your cognitive performance. It can be used to diagnose cognition disorders. It’s best to be referred to neurology to arrange it, followed by any required diagnosis.

Significant and abnormal deficits in cognition need evaluation. I don't think it's credible for a doctor to say, “It is part of ME”, when they are likely referring to CF. You can request a specialist opinion and raise concerns if you are not taken seriously.

The brain charity supports people with ME/CFS. You can check to see if they have any helpful information.

 

Just wanted to flag up to anyone seeking help/support/testing for this, that 'losing time' is something often experienced by trauma survivors who have Dissociative disorders such as DID.
So just be careful about who you tell & how you describe it, because finding oneself somewhere with no recollection of how you got there or why, or 'coming to'/tuning back in, and wondering why its now dark outside & the clock says 9pm, when it was bright daylight & the clock said 3pm 5 mins ago (as far youre aware) is a key diagnostic feature of DID.

Not suggesting that any of you have DID! or not, as the case may be, its a trauma related diagnosis.
But given the propensity of neurologists/drs to label PwME as having functional/dissociative symptoms/'caused by trauma' condition, i wanted to mention it as it could be used to further that agenda.

 

A neuro-psych evaluation detects how well the brain is working. The Neuropsychologist will ask questions to further ascertain the causes, but the actual test results will validate if cognition problems are underpinned by neurological impairment.

When I realised my cognition had slipped a great deal, I gave up driving. My family kept badgering me to continue doing it, and all I could say in response was that I no longer felt it was safe.

It is likely healthcare professionals who do not specialise in brain conditions will only associate such symptoms as being part of mental health conditions.

I think the description of the above problems is serious enough, yet safer, to express concerns about to non-specialists. Dr Charles Sheppard might be able to provide more advice about whether cognition problems require further evaluation. I once saw a ME questions and answers segment he held where he advised some pwME if their cognition problems were likely to be caused by ME or not.

The loss of time thing is a feature of neurocognitive disorders that neuro-psych assessment help evaluate. I do not want to alarm anyone or share too much personal information, but the possible neuro conditions are serious enough that they need to be diagnosed/ruled out.

 

Yeah, I've seen four neurologists in the USA in the last ten years. And two psychologists. And three psychiatrists. [Edit: no, five, including psychiatric nurses.] And five GPs (or PCPs). And about ten social workers. None of them care. Literally.

I don't know what "brain charity" is; I'll try to remember to research it (but I won't remember to).

 

Were any of the neurologists brain specialists so they have experience of looking at symptoms as a whole and how to differentiate causes?

A neuropsychologist is different from a psychologist.

A neuropsychologist looks at how the brain works in relationship to behaviour so they provide patient care to those with brain disorder and damage.

I've been seen by psychology - the result was I don't have a problem with emotions in relation to behaviour which is what they look at.

 

isnt that literally what a neurologist is? a 'brain specialist'?surely thats what a neurologist does? or should do.

Are you in UK @livinglighter ? Wondering how you managed to see these specific experts?