Amnesia

[taniaaust1]

Im having even more issues then normal and its scarying me. I dont know if its a stress thing, an ME thing or a something else thing. This is more then just forgetting things, its like memory completely wiped and it doesnt come back at all even with reminders and this now is happening for quite long periods of time (not the short time periods which used to occur)

eg Today I was apparently in the pharmacy putting a prescription in etc.. but less then an hour later I have no memory at all I was there and still havent regained any memory of it. Im aware I have also missing time periods of other parts of today being out at shops eg aware Im suddenly somewhere with no memory of how I got there.

I was told I was there and must of been there as they had the prescription I was going in to put in when I found out I'd already been there and done this.

Is this ME???

(I just rang the home visiting dr service to enquire on memory issues like this and they just said this is an emergency and told me to ring an ambulance)

 

[Hutan]

Hi @taniaaust1
That doesn't sound like ME to me - repeated incidents of full memory loss for long periods of time. Regardless, I'd be following the home visiting doctor service's advice and getting to a hospital.

Maybe a taxi would be cheaper if you don't have ambulance insurance though?

Do let us know how you are tomorrow morning.

 

[taniaaust1]

yeah, I'll let everyone know how i are tomorrow, its going to be a quiet day tomorrow so i shouldnt have trouble doing that.

 

[taniaaust1]

Hi @taniaaust1
That doesn't sound like ME to me - repeated incidents of full memory loss for long periods of time. Regardless, I'd be following the home visiting doctor service's advice and getting to a hospital.

Maybe a taxi would be cheaper if you don't have ambulance insurance though?

Do let us know how you are tomorrow morning.

i can get ambulances free as I have insurance, as Valentijin just solved for me one issue I had with going to hospital, the only big issue I have now with it is I wouldnt be able to get back home if I went. So that makes me not want to ring one.

 

[taniaaust1]

Hi @taniaaust1
That doesn't sound like ME to me - repeated incidents of full memory loss for long periods of time..

Its only been for a long period today, that hasnt happened for a long period before. Only previous short period blackouts which Ive figured out are a type of seizure.

 

[Valentijn]

@taniaaust1 - The last page says:

Care and discharge planning should encompass issues covered in these guidelines.

 

[taniaaust1]

@taniaaust1 - The last page says:

oh wow, I never noticed that in that. Thanks so much, I want to give you a big hug for point this out as I will certainly next time bring that to their attention. Maybe I could then ring one then.

***I feel quite exhausted after today and just want to rest up and I cant rest well at the hospital, Ive had a fairly big day with all which went on and about to rest up more***

but knowing what you've just told me, I will now give the ambualnce a phone call if I get any more issues tonight or tomorrow or if I get that headache back for no reason.

Irronically in the past they told me they didnt have to organise for me a safe way home as they said it wasnt in the MCS policy. (I wonder if they like me missed seeing it or if they were just telling me this to get me off their back)

thanks, you've made me feel a lot happier and less stressed. **going to get offline and rest**

 

[alex3619]

Good luck.

 

[JaimeS]

Keep us updated.

 

[TigerLilea]

Is this ME???

(I just rang the home visiting dr service to enquire on memory issues like this and they just said this is an emergency and told me to ring an ambulance)

It definitely is not ME. You should get checked out by a neurologist and probably have a head scan done. It might not be anything but you want to get things like a stroke, dementia, alzheimers, seizure disorder, etc. ruled out.

 

[taniaaust1]

Good luck.

thanks alex. Thou I arent scared of death, I do have a fear of something happening to me to make me become more disabled.

I know you've had some bad brain incidents, what is the longest you've had a memory black out for which you havent regained memory?

 

[taniaaust1]

Im starting to think I may now be getting something like http://www.human-memory.net/disorders_psychogenic.html due to trauma (though of cause I still probably should have tests to rule out other things esp since Im getting more what appears to be seizures again).

"Those at increased risk include those sexually or physically abused during childhood, those who have experienced domestic violence, natural disasters, terrorist acts, etc, soldiers who have experienced combat, and essentially anyone who has experienced any sufficiently severe psychological stress, internal conflict or intolerable life situation."

Im currently finding my life situation with the neglect around the severe ME intolerable, I are suffering from severe stress currently.

Ive had people suggest to me that I may have PTSD and do fit the diagnostic criteria for a while now that (I feel like Ive been left to die by the services, every time they neglect me in basic needs stuff just adds to this feeling) .. (though I havent been able to see a dr about that so right now do not have a PTSD diagnoses) and by this article .. amnesia may appear with PTSD.

For the time being unless I find out otherwise, this is what Im going to guess is wrong with me.

 

[alex3619]

Loss of memory is not the same as blackouts. You were, according to the evidence, conscious and aware at the time. You just didn't establish the memory.

One of my problems is loss of long term memory, but it can happen in the short term too. By long term memory, I mean episodic memory, or memory of events. I can remember facts OK but not great, but I have no memory of most events aside from the facts. I think this may well be a common problem in long term and very long term ME patients.

 

[alex3619]

I know you've had some bad brain incidents, what is the longest you've had a memory black out for which you havent regained memory?

Umm, most of my life? My life is like reading a book, just the facts. I do have flashes of memory, but not much, not nearly as much as I used to ... I recall enough to know that. This would probably be highly disturbing except I don't recall what to be disturbed about.

Several times a month I zone out for ten or twenty minutes though, especially when very sleep deprived. I am not sure this is abnormal for people who are not getting enough quality sleep. When I have had some sleep I don't tend to zone out.

 

[taniaaust1]

Several times a month I zone out for ten or twenty minutes though, especially when very sleep deprived. I am not sure this is abnormal for people who are not getting enough quality sleep. When I have had some sleep I don't tend to zone out.

thanks, thats the zoning out I used to have eg walk to a room and not know why one has walked there as Ive zoned out or zone out in bed while trying to watch tv and miss half the movie cause I zoned out (thats' frustrationing as I miss half the plot of the movie) .. those incidents are usually related to me feeling very tired.

This is completely different, complete blank with completely unaware of ANY of the facts eg not knowing I'd been even in the chemist shop though I wasnt very exhausted.

 

[taniaaust1]

Loss of memory is not the same as blackouts. You were, according to the evidence, conscious and aware at the time. You just didn't establish the memory.

One of my problems is loss of long term memory, but it can happen in the short term too. By long term memory, I mean episodic memory, or memory of events. I can remember facts OK but not great, but I have no memory of most events aside from the facts. I think this may well be a common problem in long term and very long term ME patients.

nods I shouldnt have used term blackout as it means different things to different people (and is even at times used differently by myself).

yeah that one I suspect is normal in severe ME, I call those mind blanks. I had that where I couldnt remember family member who came unexpectively to the door, like couldnt put the memory pieces or a memory together to work out who it was eg I knew I knew the person ..had recognition but had no idea of where from or who it was. That is I believe common in severe ME but very different to what I experienced the other day with no facts there at all, no recognition of being in a place at all.

 

[Gingergrrl]

Tania, have you had other incidents in the past where you "lost time" similar to this one or was this the first time that this has ever happened?

 

[taniaaust1]

Tania, have you had other incidents in the past where you "lost time" similar to this one or was this the first time that this has ever happened?

Ive had daze outs mind wipe outs before eg while driving somewhere when I used to drive (so no incidents even as bad as that for a while) eg would just drive past a road and then realise I'd only passed my turn off a minute or so later so turn car around and drive back. Once I did that 3 or 4 times, blanking out every time and hence missed my road over and over and over.

but that just seems different, more like going into auto pilot over and over due to not being able to hold focus or concentration. I had knowledge that I must of lost my concentration. I just found that kind of thing frustration rather then actually scary like I am with this latest thing.

Its horrifying me that I can go into a shop and do stuff there for a while and not know Ive done that at all.

Like even when I used to daze out and suddenly find myself standing doing nothing at all and just staring into a window display, not knowing how long I'd been like this (this is way back before i was using a wheelchair at shops). That wasnt scary as I could work out what I had actually been doing the whole time. Obviously just standing there staring into a window even though I lost all time sense.

I think the thing Im finding highly disturbing is not being even able to have worked out what I'd done and had to actually be told by another. No that hasnt happened before, Ive always been able to work out previously what I'd done at least or remembered going to a place "if reminded" even if a vague memory or at least known I may be a bit confused. (with the latest I wouldnt even known I was confused, I would of swore I never went in that shop unless I had that proof).

I would had my worker not been there to tell me I'd just earlier put my script in, I would of been left thinking I must of just lost the thing. Nothing to tell me I put the script in. Why should I even think that when I dont think Ive been even in that shop.

It was only when I found this out, did I then run my mind back on the rest of the trip out and realised I have blank patches in my memory that day all over the place (that bit is less disturbing as maybe I wasnt paying much attention when being transported in car from one place to another).

Its a pity I have a new worker as she doesnt know what Im usually like so I wont even know if I was acting odd for me. Im going to talk to her about it tomorrow when she comes.

I wonder if there is home visiting psychologists? At this point Im considering trying to find out if there are as I want to talk to a dr about this.
...............

i just thought of another weird incident but it was way back but not the same, missing time but its like I could remember where I went though time makes no sense to it. I'll pm you, too weird to put on forums.

 

[Gingergrrl]

Tania, I got your msg and will reply there instead of here. Am hoping you are having a much better day/evening today.

 

[irlen scotland]

I know this sounds odd , but , are any of these incidents related to brighter light or fluorescent lights? Does it happen as much if you wear sun glasses?