Deep confusion at night on waking

[justy]

Hi, i'm wondering if anyone else has ever had this symptom, and if there are any suggestions at to its cause. Just to say to begin that this only happens when my M.E is worse or if i'm in a bad crash. I had it a lot a few years ago and it has now reared its head again alongside a general worsening in my health.

This is what happens - some nights i wake frequently and when i wake up i am very very confused. I am not able to work out where i am or even who i am or even what i am or what i am seeing. It doesnt last long - usually long enough to scare the hell out of me, and then gradually it becomes clear. I am me, i am at home etc etc. I have had a version of this for years which i think is relatively normal where i wake up and can't remember what house i am in or what age i am - but this is much worse and really horrible.

Last night i remember looking around the room from my bed, not knowing who i was and then suddenly i had an inkling about it all and i said out loud 'are we at home?' i had been trying to work it out for a while but the answer wouldnt come. Once my husband said yes we are at home, it all fell into place and i felt ok again.

It really is very scary and i hope it stops soon.
Justy.

 

[adreno]

Are you taking any meds?

 

[justy]

Inhalor for lungs - for many many years. PPI for the past week (symptom predates) plus b12 injections and a few other supplements. Thats it.
Justy

 

[Nielk]

I was going to ask the same question as Adreno. Sleep meds can definitely do this to you. They can play with your brain and you wake up all confused, especially when you wake up in middle of the night when the meds are still in full swing.

I have had this happen when on sleep meds. It also has happened when I consistently have not had sleep for a long time.

 

[justy]

Hi Nielk, thanks for the reply. I don't take medication for sleep and i have slept well for a long while now.
Justy.

 

[hurtingallthetimet]

hello justy...i have insomnia so i dont really get to sleep good alot...but after days of not sleeping sometimes i will sleep some and if have to wake up to bathroom i will be confused..maybe just from being so exhausted and sleeping deep makeing you confused?

also i took ambien before and i would go outside talk to people not there in middle of night...write angry emails...and im not aggressive person etc...i saw you dont take any medications like that but maybe its just from exhaustion and heavy sleeping state? or maybe sleep walking but being kinda aware of it?
take care

 

[jeffrez]

Sounds like it's just the brain not being fully awake yet, probably with some low frequency delta or theta waves predominating and your higher frequencies not kicked in yet. So in other words, even though you are technically "awake," feel awake, alert, etc., part of your brain hasn't actually woken up yet and is still in a kind of dream or fugue state. Just guessing, but if that's what it is, it's probably related to the CFS in that the brain is having trouble "shifting gears" from the low energy, kind of like when it's hard to concentrate or we lose focus, except while your brain is still partly asleep. I'm glad to hear it goes away, it sounds like a really frightening and disorienting experience!

 

[vitamink]

i've experienced this as well, usually during a crash. profound disorientation lasting up to an hour or two. can't say i found a solution but it did stop happening eventually. although i did experience this recently (not in the morning but throughout the entire day) during some episodes of encephalopathy. jeffrez' explanation sounds reasonable. hope it goes away for you soon, justy.

 

[Nielk]

Justy, you said this happened to you in the past. Did it just go away by itself at previous times?

 

[justy]

Yes - it seems to be realted to a worsening of all symptoms and goes away when my health improves. Apparently its common in dementia and Alzheimers (bit worrying) Ive had quite a lot of other cognitive problems so it could be related to brain activity.
Had a CT brian scan a couple of weeks ago so will see if anyhting turns up on this (although i doubt it as CT scans are not as detailed as MRI)
Justy.x

 

[Nielk]

I know that I have alpha wave peeks/intrusions on my eeg. I think that this is common with CFS - the "wired" brain finding.
It's becoming worse for me where I feel like I have ADHD which I never have had before.

It definitely sounds like a neurological issue with your wake/sleep disorganization. Is it a neurologist who ordered the ct scan?
Was it taken for this problem? A spect scan might be better as far as showing the brain abnormalities that come with CFS.

I'm just talking like a real lay person here.

I hope this starts improving for you as I'm sure this is a pretty scary symptom to deal with.

 

[Wayne]

Yes - it seems to be realted to a worsening of all symptoms and goes away when my health improves. Apparently its common in dementia and Alzheimers (bit worrying) Ive had quite a lot of other cognitive problems so it could be related to brain activity.

Sorry to hear about the difficulties you're experiencing. I had an experience about twenty years ago (while I was still managing to work some). I went out to a state park about 20 miles or so out of town, something I didn't do very often. I ended going to sleep (passing out might be a better description) in my vehicle for an hour or so, and woke up (very groggily) around dusk. As I was driving home, I all of a sudden lost all awareness of where I was.

I remember becoming uncomfortable because I wasn't on a familiar road, and couldn't remember where I was going. I then realized I had no idea where I was, not even knowing which state I was living in at the time, or what my current status in life was. I had experienced some relatively minor similar experiences, but even though this lasted for only about 15-30 seconds, it was quite disconcerting, and probably the strongest experience of this sort that I'd ever had.

I chalk it up to part of the CFS experience. It happened at about age 40, and so I don't believe it's connected to typical Alzheimer's progression. I've heard of teenagers with CFS suffering from profound mental disorientation, which also indicates to me this is not anything like the plaque buildup seen in Alzheimer's. But I do consider it a form of dementia. It goes in cycles for me, and I've sort of been able to make peace with it. I've been dealing with it for many years now, and have become confident in knowing that I'll eventually come out of any low cycles that occur.

All the Best, Wayne

 

[Mary Poppins]

I've experienced this, Justy - and thanks for sharing the symptom. It's not something I've really acknowledged in the presence of others. It's frightening, isn't it?

Like Wayne, I put it under the umbrella of 'CFS/ME' - although that makes it no easier to cope with. I do hope it eases for you soon.

 

[justy]

Thank you Neilk, Wayne and Mary P for your reassurance. I agree that it must be part of some sort of M.E brain thing going on. I have terrible memory etc at other times and i'm only 42!

It would be interesting to know if the very severe M.E patients suffer with this kind of disorientation. It's hard for us to know much about people with very severe M.E (although i have had small glimpses into it from my own condition)

I'ts no wonder we sometimes feel like we are going crazy - and impossible to interest anyone in it all. It was my endo that ordered the CT because of persistent headaches and eye pain - he knows nothing about real M.E but refers tosome sort of CFS/fatigue illness as if it were a cold. My GP is going to refer me to a neuro, but i have to get signed off by the endo first and then go on the waiting list - so could be next year before i see anyone or the end of this year if i'm lucky.

Take care all, Justy.

 

[sianrecovery]

Hey Justy
I have experienced this, but not often, I dont know the causation - but a couple of things occured to me:

1. Very low blood sugar?
2. Cortisol crash?
3. Some kind of melatoin inbalance?
4. A reaction to HTP or tryptophan if you take them?
4. Sleep apnea - Teitelbuam mentions in Fatigued to Fantastic - or some other form of oxygen/carbon dixoxide inbalance?
5. environment factors - mould, EMF's, etc?
Hope it soon passes xxxx

 

[Calathea]

I get this sometimes, it's horrible. I don't usually work out where the light switch is, so if I'm lucky, I don't realise that there's someone in the bed with me. If I do realise that there's someone in the room, I panic even more, because I don't recognise my partner - I don't even know my own identity when it occurs. From what he's said, it's happened on quite a few occasions that I haven't remembered afterwards. With regard to Sian's theories, I rarely take sleep meds, and never HTP or tryptophan, so I don't think it's that. I had a sleep study about seven years ago and didn't have sleep apnoea. I'm fairly careful about spacing meals over the day, so I doubt that it's a blood sugar crash, although I suppose that's possible. The environmental factors don't change. As far as I can tell, it's quite random, and I don't think I've noticed that it occurs during bad patches or anything like that, although I've never actually logged it.

 

[taniaaust1]

It would be interesting to know if the very severe M.E patients suffer with this kind of disorientation. It's hard for us to know much about people with very severe M.E (although i have had small glimpses into it from my own condition)

I'ts no wonder we sometimes feel like we are going crazy -
Take care all, Justy.

I wasnt going to comment on your original post as I havent really had much of that even when I did have extremely severe ME but thought I'd reply seeing you are wondering and severe ME and this.

Ive only had one eposide where Ive woken up and didnt know who I was at all or who my family was or where I lived. I had that one experience before I got ME.

Ive had issues with waking up and not knowing if Im awake or asleep..hence not knowing what is real and what is unreal.. but I still have other normal awareness of myself.

I can also esp if bad, wake up very dazed feeling where its slower for my brain to kick in as Im still like half asleep so thinking extremely slowly but it dont cause me any fear at all as Im not awake enough to be thinking a great deal. I often give myself "wake up" time in the mornings, even when Im not taking drugs.

 

[sianrecovery]

Forgot to say - many of my sleep disturbance symptoms receded when I started sleeping earthed, a la the Earthing book by clint Ober et al - tho I used a sheet from a guy in the UK, Roy Riggs