Black outs/loss of time

have had a few minutes lost…but not to that degree…It’s not Friday…So If it were ME,, I’d call the doc and ask IS THIS NORMAL? It could be just having CIDP, or it could be the meds, or please not…something new. Do not play around with the possibilities, let the docs know about it and then go get more tests!

At least, tests limit the worse options, so I have been told.

Hi, Steph.

I agree with Homeagain. A few CIDPers have complained about mental blips, but these are usually only a few seconds and they’re not common. Talk to your doctor about it. There are a lot of things that could cause it; don’t assume it’s CIDP.

Best wishes in the battle,

Deb

I can only respond from my experience with GBS. During those first, most difficult years, I would often loose track of time. It was like a time warp 😮 12+ years later it is a rare occurance.

I have experienced loss of time for years now– in several different ways. I wouldn’t call any of them blackouts (although when I am at or near my worst, I can fall asleep with virtually no knowledge or warning that it’s going to happen– like, mid-sentence, if I were in conversation… and not know that it has happened until I awake (more like “come to”) hours later– that’s the closest thing to a blackout, but it isn’t really one.) When my fatigue is sky-high, I can easily stumble through several days of sleeping– and when I start to come out of it, I’ve lost DAYS. Clearly I must’ve been at least partially aware to have successfully stumbled to the bathroom and back numerous times, but if people have spoken to/with me, there’s a good chance I will have NO recollection of it. If I had things scheduled (doctor’s appointments even, or bills due to be paid), it’s likely I missed ’em. If I’ve put things away somewhere “so obvious that I’d never forget”– I’ve forgotten. That’s one big way I feel I “lose” time.

The other is that when I’m (slightly!) more functional, tasks either take much, much longer to accomplish than they used to, or it feels like I’m doing something quickly but the clock is telling a different story– that sounds more like what you have described. I now set (at least three) alarms before appointments or obligations (since I can apparently wake up and turn them off and go back to sleep, with no memory), and I allow HOURS to essentially stand up, put on my shoes, grab my keys and get out of the house. And it DOES take that long (and I’m *still* late more often than I’d like to admit!)

Just this past weekend I made what I thought was a quick dash into the grocery store to pick up a couple items. I’d gotten a call that one son had arrived back at the house, I haven’t seen him in a while, and I wanted to get home quickly– so I know I wasn’t dawdling. Yet when I got back into my car the clock indicated that I had been in the grocery store for nearly an hour– 55 minutes! It wasn’t busy in there, it was late at night. I didn’t stop to sit down anywhere, didn’t stop to talk to anyone, didn’t buy much– so why did it take me that long? I DON’T KNOW! This happens to me all the time. In fact, I’ve occasionally ended up in grocery stores for over TWO hours, so I was relieved I’d only lost ONE hour, haha!

The bathroom is another really common place for me to lose time, getting ready to leave the house. (And I shower the night before– then rest up overnight from THAT– if going somewhere the next day. So I already split up the task over two days.)

I think what happens is that everything physical takes extra energy, anything requiring decision-making takes extra time and energy (whether it be which brand of tea to buy or which outfit to wear), anything requiring locating items (whether spaghetti or eyeliner) consumes extra time and energy… every teeny tiny step eats up extra time and energy, so it adds up in a very sneaky way. I think the physical fatigue can be severe enough to affect our memory (both in function: did I already take my lipstick out? oh– nevermind, I must have, since I already put it on, duh!, AND in that we don’t remember the time passing). There’s only so much juice available to run all our programs, and we usually don’t notice what’s getting dropped when it’s dropping out– except when it’s spotlighted, like by the hands of a clock.

Sorry about your garage door! I did that once– not too much damage, though. Here’s one of my bonehead maneuvers from yesterday for your enjoyment: after some activity I went to crawl back into bed to rest for a while, and figured I’d choose something to watch on television, something I’d already recorded (because I fall asleep so often, I rarely watch anything unless it’s recorded, so I can go back and watch what I’ve missed when I wake back up!) Anyway, I pressed the green DVR button on the remote, to access the menu of available taped programs. Nothing. Okay, my hands are pretty numb, probably missed the button… tried again: nothing. Watched closely while pressing it– AGAIN: nothing! Think for a moment– “am I doing this correctly? Hmmmmm… yup, it should definitely be the green button.” Try again: nothing, the screen is still black.

Waaaaiiiiiiiiit a minute… black? OH JEEZ! *DUH*– I have to turn the whole thing ON first, then the green button’ll work!

I know– pretty bad, right?! ;-p

These kinds of things happen to me ALL THE TIME now. And I used to have a mind like a steel trap! I make lists, try to pay attention, and after that just do my best to not beat myself up for it or waste any more energy fretting over the loss(es.) Hang in there!

Hi Steph – I’ve not experienced blackouts per se, but I have noticed that things are hiding from me! I walk from room to room trying to find that cup of tea I just had in my hand, etc., and the darn thing hides! I do notice that when I shop, I spend more time than I used to – and I think, “where did the time go”! And, catnaps that used to be 10-15 minutes are more like 60 minutes. Hang in there! Good luck and good health!

Hi Steph,
It’s not that I loose time it just that things seem to take a whole lot longer. I also find that I can get distracted very easily. Also like Deedee said, thing “hide”. The worse part is that after some time they suddenly appear right where I was looking before. I sure would like to blame it all on CIDP and not old age, but who knows…

did you call your doc and ask? Did you get any answer?

It’s good that you will be going with the kids for the summer. BUT in any which way, you should find a doc where they are who has even the tiniest CLUE what to do where ever you are. Be sure to set up something with your doc and a doc near your folks so any problems won’t be big ones. Better to be super-safe than not.