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I want to talk about one I havent spoken about before

Discussion in 'Sleep' started by taniaaust1, Apr 19, 2012.

  1. taniaaust1

    taniaaust1 Senior Member

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    This morning I got woken up by the maintence guy showed up. I've been waiting FOR agES for them to come and fix the collapsing, dangerous backstairs of my house. I was ffeeling so so tired that I tried to hide I was at home (couldnt handle the thought of all the hammering that would happen), but to my embarrassment he noticed me home and hiding from him just as he was driving off. He thou still left and I went back to bed.

    I woke up again... tried to fix something in the spare room but the orthostatic intollerance got to me so I left it hanging from the wall for my carer to attach properly later. Then I blanked out.

    Then I found myself outside, confused and exhausted.. confused to the point that I didnt know know if I was at the right house. A carer showed up as meant to happen today. It was a new one like I thought may happen (as the other one last week isnt completely suitable due to how far she's coming and I had to dismiss her early, the org is trying to find a carer for me locally).

    The new carer was lovely thou I had to explain quite a bit to her in my very tired state eg she put the house lights on when I was half asleep and so the light bothered me. I ended up falling back asleep...

    I woke up again.. only to realise that ALL those other things were FALSE AWAKENINGS. I truely believed I was awake at the time and it was so like real. All the explaining to the carer while tired and just wanting to be in bed that Ive spent this morning doing... happened in my sleep :( .

    I hope I dont have to go throu that all again in about one hour when a carer is coming. Its like experiencing "ground hog day".. cause I have to go and redo all the things Ive already just done.

    This is the third time the past few months Ive had a night like that with false awakenings. It may be happening to me even more then that but I may be accepting the false awakenings as reality as they are so real. The only way I can tell is what is real and not with all this is the time when I awake..dont make sense and hence I know I wasnt awake before and that those things actually didnt happen.

    (Im having to use a clock to distinguish at times between dreams and reality).

    I dont know if my sleep meds are causing this (as its only been going on since I started taking the anti-histamine..but I think its related to the combo of that with the melatonin).

    I cant change those sleep meds which may be doing this as the only other med with works to get me to sleep is my Tempazepam. That seems to be the only med which isnt giving me any issues.

    I need to probably go and see a bowel specialist due to what the other sleep med trial (amitriptyline) Ive now stopped, has done to me (paralysed lower bowel).. going to go to try to go to doctor to try to get a referal next week.

    Anyway else having issues with false awakenings? Is it possibly blending in with your reality to the point where it at times becames hard to tell what times you did wake up and do things and which were just a dream?

    Its a bit of concern that I may have or get false reality beliefs from this issue, to stop the meds thou would mean I would either then not be sleeping at all again (sometimes going up to days without sleep) or instead increase the amount of days I take, the only med I know Im currently okay on, the Temtabs (which I dont want to do either and would be going against doctors wishes).

    By having so much reality in the dreams.. and them so intense.. its very confusing at times.

    http://en.wikipedia.org/wiki/False_awakening
  2. SickOfSickness

    SickOfSickness Senior Member

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    I have, it's rare for me. In mine, bad things happen, or I interpret them as my mind playing out the scene with worse outcome. I could have had one like yours, because of being scared of getting caught hiding, and being scared of being so tired when the new worker came, and of her not understanding and turning on all the lights. I interpret it as my fears coming out like that.
  3. taniaaust1

    taniaaust1 Senior Member

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    Im not scared of having to explain about lights and light intollerance.. no fear there of that.. its just so darn annoying having to constantly explain all the stuff we have to explain... all the different symptoms of this illness.

    There was actually nothing bad at all (just stuff which is "normal" for me to go throu.. I see it as quite normal for me so no big deal), OTHER THEN that thing with being caught making out I wasnt home with the maintence guy..

    in real life that isnt at all something I have feared, Ive never even thought about him turning up at a bad time.. but Ive been annoyed that he hasnt showed up yet. Im not supposed to use the back collapsing steps till they are fixed. Luckily I cant hang clothes on line out the back anyway (raising my arms above head triggers POTS).

    If these false awakenings are based on my reality feelings.. Im surprised that I didnt scream at the maintence guy for taking WEEKS, a month to come for what is an urgent job. (when he came to inspect the steps he himself fell throu one.. one had already given way on me making me fall). Im annoyed at him.

    Im going to have to ring up today and ask the maintence people.. why hasnt he been yet.

    The false awakenings werent what I'd call nightmares.. much of it was actually pleasant with the carer being so very nice. I'd love to have one like that. Im just concerned about how hard it can be to distingish them from reality as its so like my normal day stuff and real.

    I do get nightmares at times but those dont seem to be false awakenings like these are.

    http://en.wikipedia.org/wiki/False_awakening


    the wiki article explains the false awakeing stuff Im experiencing very well... every time I awake.. I think its real.. I wake up many times.. thinking every time is real.. like i think right now is real.. its no different to now.

    Maybe Im not even awake right now.. I cant tell. I hope Im awake right now, Ive really had enough of this tonight/this morning. Im using a clock to see if Im waking up at normal time to try to distingish between if Im asleep or awake..but i could dream the time on the clock :( this whole situation is really screwing with my head.

    :( maybe I arent awake right now seeing I just coincidently read that :( . I dont know.. what is happening right now is what would appear in a dream... reading that when thinking about all this. Im feeling more and more confused if Im awake right now or not. Reading that has pushed me even more towards thinking that right now I may not be awake.

    How do I know if Im awake or not? Have I spent the past hour typing all this out and its not even real? Im going to get offline as it is going to peave me off a little if Im dreaming right now and spent so much time doing a post which I will just have to try to post again when awake.
  4. bel canto

    bel canto Senior Member

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    http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000808/#a684003-sideEffects


    The tempazam can do strange things to memory/waking states, etc. It also mentions antihistimines as something to mention to your doc. Maybe you have some reaction to the combo, or your blood level of one or more of the drugs has built up.

    Sleep issues are such a problem! What you describe is concerning. Good luck with working it all out!
  5. L'engle

    L'engle moderate ME

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    I'm had minor instances of this. Sleep paralysis with dreams of awakening that turn out to be dreams. Usually I'm trying to move and when I finally do, I realized suddenly that I'm still asleep and still can't move. :p I've rarely had ones that were entire conversations with people though. I did have one where I got all the way to the kitchen and tried to test whether I was awake by voluntarily moving my arms. It felt like they moved, but then, I realized, they had not, I was still lying down, was still asleep. It happens to me usually when the room I'm in is too warm, usually towards mornings, in a second or third block of sleep. I haven't had any that were majorly confusing after I woke up, though. I wonder if keeping a fan on would keep air moving and improve sleep? Just a theory, it seems to help me, but then I know mine is caused by a warm room.

    Good luck, these things can be disconcerting!
  6. SickOfSickness

    SickOfSickness Senior Member

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    Mine are not nightmares either but just saying why I think I get mine. With whole conversations like normal, but mine have something stressful happen. I believe I had non-stressful ones that I don't remember. It's the stressful ones that don't disappear and get erased. Sometimes it was in person or a phone conversation I dreamt. Once I wake up and realize, I try to mark it as a dream, but later in the day I might remember it, like it was an actual event. Also it could be like a reminder. If I had your dream it would be me reminding myself to call again for the maintenance guy.
    taniaaust1 likes this.
  7. taniaaust1

    taniaaust1 Senior Member

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    thanks for that. The room wasnt that warm last night so I think I can rule that out as probably being a cause.

    ohh waking dreams with sleep paralyses.. Im glad i havent had one of those.

    A long time ago (not when I was ill with this illness), I used to do lucid dreaming (which I dont find disturbing as Im aware it is a dream) and also out of body projection (on purpose).. and at times would run into sleep paralyses while trying go get out of the state, so that isnt something which bothers me too much.

    I usually used to be able to break a sleep paralyses state by trying to wiggle a toe (thou it can take a while to break it..sometimes it used to take as long as several minutes).

    But having it with a false waking dream...while not knowing if awake or asleep, that would bother me as one would be wondering if one is trying to excape reality (eg maybe the ME has paralysed me?) or not. (I have actually been basically paralysed by ME when I was very bad in a crash.. only managed to move a finger so yeah.. if it happened with a false waking.. it would panic me in that situation).

    I spent nearly all day today, completely confused if I was awake or asleep still thinking Im awake. It was aweful. I ended up getting quite a lot of anxiety (had a bit of an anxiety attack) over if I was actually awake or not, but then ended up letting that one go with saying to myself that if "Im still asleep..well what does it matter"..

    If it starts happening more and if I cant learn to do with it, I dont know how I will be able to stay on my safer sleep pills. I know I wouldnt be able to handle too many days like that.. it would cause one to get crazy, not being able to trust or know when one is in "reality". I lost faith in reality today and couldnt trust I was actually in it, due to just one bad night of reoccuring over and over false reality.

    The carer which was meant to come today didnt come (so I still dont know what happened there, I rang the org and they didnt know why she didnt show up either. I suspect there may of been some confusion between us). Her not showing up thou with no phone call to me being made, just added to the possibility of today not being real, that made me further think I may be still asleep.

    Im okay now, finally managed to convince myself that Im "probably" .. Im like 98% sure now that Im awake. Not knowing if asleep or awake thou was unsettling due to the loss of being unsure about reality.

    I spent today searching online for how people deal with this issue and how to tell if you are in reality or not.

    Unfortunately many of the suggestions of "reality checking" for those with this issue wouldnt work for me eg see if you can remember your phone number, if you cant remember it you are probably dreaming. (Well I cant even remember my phone number even when awake thou!!).

    Another one was see if you can read something with the words not changing on you as they are supposed to shift if one is dreaming... well I know that the words I choose to read when asleep dont change if I concentrate on them. Ive been in a sleep state before while focused on reading something and the reality was stable.

    The looking at clock thing I was doing to try to work out if I'd experienced things which werent real or not.. from what Ive read now is something which often easily fails to help one tell the difference as one may dream the time one expects to see.. so its not a good way of reality validation.

    Anyway I did read of one reality testing method which "may" work for me if I get this issue more... go to a mirror as soon as you wake up and look hard at yourself.. if one is asleep at the time they say the image will shift. So I'll try that to help distinguish between reality and sleep state. Happy to have a plan of action in mind if this all starts happening again. It sucked not to know if one was real or not.

    (From what I saw online, it seems some others have had this same issue when taking Melotonin esp if its taken with B complex.. I didnt have B complex with it but at least I know now not to have the Bs at same time).
  8. taniaaust1

    taniaaust1 Senior Member

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    my post to you didnt show up..so doing it again.

    umm it could be something like that. I was so unsettled by not knowing if I was alseep or awake today, that I didnt end up ringing them. Forgot to ring to make a doctors appointment I need as well. Hopefully tonight will be more normal
  9. taniaaust1

    taniaaust1 Senior Member

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    I arent having the issue when I go to sleep with Temazepam only with the other drugs. My doctor is aware that I take other things when I arent taking the Temtabs.
  10. hurtingallthetimet

    hurtingallthetimet Senior Member

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    are you on ambien if you dont mind my asking? i ask becuse i tried it and i hullicanted like crazy...would go outside talk to people who werent there, it made me angry and aggressive which im normally not, i found angry emails id written, id thought one family member was another etc. was very very scary...

    but i do also have days i go in and out of it..its like i wake up a few mintures and pass out...i dream crazy dreams sometimes nightmares which i hate becuase they seem so real and scary...

    hope you have better days ahead
  11. xchocoholic

    xchocoholic Senior Member

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    Neurontin did this to me. And one of my sleep supplements did too because I was on too high a dose for too long. I take melatonin, theanine and 5htp and can't remember which one now.

    Hope you feel better soon. X
  12. Xandoff

    Xandoff Michael

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    tanaiaust1,

    Melatonin really does a number on me. Sometimes I can take it but if I do I feel very hung over and un-un-un rested! I hope you can get some relief. Listen to your body and put offf anything that you can.
  13. Kina

    Kina Moderation Team Lead

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    I tried melatonin a few years ago. It gave me extremely vivid dreams and made me feel very drowsy the next morning. I have read similar complaints related to melatonin.

    Good luck in finding something that helps without causing too many side-effects.

    Kina.
  14. taniaaust1

    taniaaust1 Senior Member

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    No I dont take ambien. Over the years thou Ive heard of many talk of having experiences on it like yours. I used know someone who was on it and she had to stop it as she ended up while asleep still, standing in the middle of a highway where she could of easily been hit, with no clothes on. She wasnt aware she was undressed or where she was.
  15. taniaaust1

    taniaaust1 Senior Member

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    Fortunately no more experiences like that.

    It was a very strange day after that strange night.. a day where I wasnt sure if i was awake or asleep and reality watching to convince myself it was real. My carer didnt show up and the org didnt know why she hadnt. They ended up calling an emergency carer in for me as I'd defrosted a heap of meat planning to get the carer to take me shopping and then help me cook up some meals for the week.

    When the emergency worker arrived to help me out.. it turned out of all people to by MY DAUGHTERS BOYFRIEND MOTHER!!!. (i dont know her so it was good to meet her and I had no idea she did that kind of work). I got to laugh at the whole coincidence now but when I was in a state of not being completely sure if I was awake or not and that happens, it just didnt help the situation.

    Strangely something thou shifted FOR THE BETTER the next two nights after that experience. I cant remember waking up early and feeling good enough to get straight out of bed this year.. I usually wake up anywhere from 10.30 to sometime in the afternoon. The next two nights after the night and day I was left confused. I awoke at 7.30am and the night after that, I awake at 8.30am and was able to get up feeling wide awake and with good energy.

    Amazing to feel like a normal person again, I'd forgotten what it felt like to be able to wake up like that.

    I wish I could figure out what it was different and maybe that strange night caused an alteration to something. Maybe my usual sleep wave state or something really is impacting badly on me usually for much into the next day?

    Both those wake up early and good days.. I still had my normal melation, insomina was a little bit better then it often is as I only had to take the melatonin but I still didnt get to sleep till after 2.30am.. but i was awake and feeling great to get early.

    I so wish I knew why.. what in my body had corrected? (The POTS and ME hadnt corrected but whatever stops me feel feeling what normal people do when they wake up in the morning and how they feel.. had)

    Thou the melatonin probably caused that night of false wakings.. that night of false wakings temporary seems to have fixed for a short time something in my body. I can only relate the change to it must of been something about that experience caused it.

    Maybe it helped to break some kind of not healthy cycle in my body (hormonal??) which happens while asleep, so hence i was better next two nights (sleeping like a log once asleep.. I usually sleep well once asleep but it was like the sleep of the dead and waking differently in the morning).

    Was my brain wave state different those two nights? Is that causing a big after affect (lethargy ..causing me to have to push myself so much harder).

    My body/brain thou now gone back to its usual issues with being tired in morning and not ready to wake up early.
  16. bigmama2

    bigmama2

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    yes i have had very similar experiences. i am asleep dreaming - that i am asleep and i wake up and do whatever- start to get ready for the day, etc,,,,and it seems sooo real. but then later i acutally wake up and think -what's going on?! am very groggy and confused. then fall back asleep and start dreaming and the cycle repeats itself.
    its strange. when i was more ill w cfs i had alot more of this happening.
  17. taniaaust1

    taniaaust1 Senior Member

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    thanks bigmomma.. yeah that's how it is.

    II posted recently that Im now thinking I may of developed Narcolepsy and this above thread could be part of a whole complex of that, as narocolepsy dont just cause sleep attacks..but there are other issues like this thread which go with it too. Issues with automatic behaviour which Ive also had of late (eg be dropping meds into my mouth but just keep on doing and doing it.. loosing awareness of what Im doing so autopilot unawareness), along with sleep attacks Ive been getting lately too.
    Also would explain some of my seizure like incidents when I collapse, I have POTS which can cause me to collapse but I get another kind too which dont seem to be POTS which one of my specialists thought could be epilepsy but epilepsy hasnt been found on my EEGs.
    http://en.wikipedia.org/wiki/Narcolepsy
  18. valentinelynx

    valentinelynx Senior Member

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  19. Calathea

    Calathea Darkness therapy

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    Yikes. I've had a few patches in my life where I wasn't sure whether something had really happened or I'd dreamt it, but nothing on this scale. A few suggestions occur to me.

    1. Could you keep charts you tick off for basic things like meals and what your carer does? My support workers do this anyway, partly to remind them to do the essential stuff and partly to see what the other support workers have been doing. I don't know how far it will help you, that sounds hard to predict, but at least the carers will know where they are. It may also help them monitor how bad this problem is for you, so that someone outside this confusing situation is keeping an eye on it.

    2. Have you looked into using darkness therapy instead of oral melatonin? I've probably wittered on about it plenty by now, but the idea is that darkness therapy stimulates your body to produce its own melatonin by eliminating blue light (this is included in white light) for a few hours before bedtime, and then sleeping in total darkness. I don't think it's been researched specifically for ME, but there's a growing body of research on it for various problems, from sleep disorders to cancer, and now that it's picking up, there are quite a lot of reviews on Amazon from people using tinted glasses for darkness therapy, most of whom seem to do very well on it. Here's my website on it, In Search of Mornings, and you'll find a lot of other useful sites in the links page. I can't remember where, but I'm fairly sure I've encountered a few people who believe that this is a much healthier way of sorting out the melatonin problem, as it doesn't seem to be subject to the same possible side effects as taking melatonin orally. I would guess that the difference between producing appropriate levels of melatonin yourself and taking a melatonin supplement could be as profound as the difference between producing appropriate levels of serotonin yourself and taking an SSRI antidepressant. This is one page discussing the problems with taking melatonin orally rather than working to produce your own.

    3. That site also mentions that problems can occur if you take melatonin inconsistently or sloppily. Is that the case, with the melatonin or any of your other meds? I remember your posting about having great difficulty with taking medication regularly. If that's happening, perhaps you might be able to sort out this problem, at least partially, by finding a system whereby you take your medication more regularly? At the very least, you must be finding it terribly confusing to know what you've taken with all these false awakenings.

    4. It could also be a matter of needing to adjust the dose, or even try a slightly different antihistamine.

    When did this problem start? Can you think of anything that may have triggered it?
  20. taniaaust1

    taniaaust1 Senior Member

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    I do keep a list for when carer is coming as I tend to forgot to ask her to do things otherwise.. I need to always have lists.

    Ive seen some of your posts on that ... I tend to try to be off the computer 2-3 hrs before bed (or it does interfere with my sleep) and I do sleep in a totally dark room (but have issues when the sun comes up as it still gets light in it then but Im trying to do something about that.. i did completely board up one window with wood and no light comes throu there once its dark outside).

    I wasnt taking melatonin all the time as if i take Temapazem.. I dont need to take melatonin with it hence then inconsistant with it (why take something when you dont need it). When Im on my other sleep drugs.. I need to rotate them so not build tollerances so hence will be inconsistant with individual drugs as at times I'll be taking others instead.

    But right now as I arent taking the Temazapam as my sleep as improved a lot.. so Im now just taking melatonin consistantly right at this very moment. I try to take the same time each night or it wont work for me.
    I tried a couple of days ago taking it a bit earlier then normal as I was feeling more tired and thought I'd sleep, but that stuffed up and then i didnt get to sleep at all and it didnt seem to work (as I'd taken it too early).

    Ive forgotten now so just looked it up in my post and see i said "dont know if my sleep meds were causing that (as its only been going on since I started taking the anti-histamine..but I think its related to the combo of that with the melatonin). "

    So far so good.. I havent had another incident since I stopped the anti histamine/melatonin combo a few weeks? back. Thou as Ive only been getting that happen every month or so.. at this point I still dont know if that was the relationship to the issue or not.

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