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Does anyone else get this?

Discussion in 'General Symptoms' started by jules78, Mar 19, 2014.

  1. jules78

    jules78

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    Hi all I've just had another 'episode' where I suddenly feel like I've woken up, but I'm not asleep!

    I'm disoriented and not sure where I am, then a couple of seconds after I get my bearings again. I was just sat on my bed looking online. I was definitely awake as I was reading something at the time!

    But then all of a sudden I'm like my brain says where am I, and I'm not sure whereabouts in the room I am.

    Sorry I cant be more descriptive. It's a hard thing to try and explain.
     
    *GG* likes this.
  2. *GG*

    *GG* Senior Member

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    Are you on any sleep meds? I take Remeron, and when it is kicking in. I try not to take more than needed to get me to sleep, so I do wake up at my computer. I usually know where I am though, not disoriented a lot, but some. FYI

    GG
     
  3. jules78

    jules78

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    Hiya @ggingues
    I'm not taking any sleep medication no :)
     
  4. jules78

    jules78

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    I found something that describes how I feel called spatial disorientation. I'm not sure if this is it or not.

    But it says people with CFS can have this as a symptom.
     
  5. justy

    justy Donate Advocate Demonstrate

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    Hi Jules. sounds just like one of the weird M.E symptoms that we all suffer from, from time to time, especially those on the more severe end of the spectrum.

    I have been having lots of strange 'brain' symptoms recently and keep wondering if I may be having seizures of some sort. I have been getting these very strange absent feelings in my mind and then the muscle spasms might start (full body jerks, not twitching) I can feel it coming on and can almost stop it for a while, but then it gets overwhelming and my arm or legs fling out and my head snaps to the left usually. This will happen repeatedly for about 5 minutes, sometimes I make an involuntary noise at the same time as the movement. During all of this I am completely conscious and aware but just feel 'spaced'

    I also get very horrible night time confusion - I wake up and cant work out where I am or who I am - once I didn't know WHAT I was!!

    My neurological symptoms like this are always worse when I am more worn out. But I also wonder if I might have Lyme disease - am going to Belgium in May and will have testing then.

    I also presume these kind of symptoms are common in People with severe/moderate M.E, rather than CFS (although not sure I want or need to get into that discussion again)

    I have also had a really strange feeling inside my head as if my brain moved. Dr Myhill wondered if it was dehydration (rattling brain can be a symptom) but this was like, I would go vacant and absent feeling, then feel as though something strange was going to happen, then it would literally feel as though my brain moved in a circular motion to one side - so strange.

    Added to that I am having more burning sensations on my skin.

    Weirdly despite all of this I am still quite able to be up and about and doing things at home, and studying still, although I am feeling like shit all the time...
     
  6. Ren

    Ren .

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    From the early years of my illness, I remember twice experiencing this kind of extreme disorientation.

    Maybe for me it was kind of like the feeling you have when you first wake from an intense dream and it takes a moment for your mind to seperate the dream from reality - or like when you wake up in place that isn't home, and you can't recall at first where you are or why you're there.

    Both times I experienced this disorientation though, I was in public places. The first time was at a restaurant, and when I sat down, it was like my mind had been wiped clean, and I had no idea where I was or why, etc. The other time was when I walked out of a store. That time I was alone, and it was very unsettling.

    Like most of us, it took forever to get proper medical care. I was eventually diagnosed with Lyme (neuroborreliosis) and co-infections.

    I haven't experienced this type of disorientation since the early years of my illness - just to say that there's hope that such symptoms will go away with time, though it may be years. I also, early-on experienced an intense burning sensation on my skin at times, which sounds like what justy described. This also went away, with time.

    Antibiotics were obviously important to kill the infections. I also experimented a lot with my diet in order to avoid foods that worsened symptoms. And I avoided perfumed laundry detergent, soap, shampoo, etc.

    Justy, I also experienced something that sounds like what you said with your brain moving. What I experienced made me think that it was like there was a magnet outside my head and my brain was being pulled toward it. I also experienced some mild jerking early on - and for me this was my head involuntary twitching a bit. The magnet feeling and the twitching didn't happen together, and they happened frequently but not everyday.

    I still but extremely rarely twitch. I've also had some neck injuries in the past and arthritis in my neck, so perhaps those have made me more vulnerable in that regard. I haven't experienced the brain-pulling sensation in a long time - so knock on wood, this has now completely passed as well.

    During all this time (and with far worse symptoms as well), the "doctors" were horrid, cruel, evil, ignorant monsters.:devil:

    I had to seek private care in another country to get any help. But I did get help from kind and intelligent humans - real doctors! - and with time, the symptoms I described above have (largely) faded away. Hope that helps give hope that you can continue to heal with time. :angel:
     
    Last edited: Mar 20, 2014
    justy likes this.
  7. justy

    justy Donate Advocate Demonstrate

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    @Ren I love you magnet analogy - that is exactly right, and yes I don't get it at the same time as the twitching and not everyday - it comes and goes. I had thought these symptoms were a thing of the past, as I had slightly improved, but they seem to be back and my health has slid down a bit again.

    I would be interested to hear more about your experiences with doctors and treatments - if you are willing?

    All the best,
    Justy.
     
  8. Ren

    Ren .

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    @justy - I'll PM you. :thumbsup:
     
  9. jules78

    jules78

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    Thank you @Ren And @justy . Ren how you described it is certainly how it felt.

    I've never experienced anything like it before, when fully awake anyway. Since becoming ill I have had it upon waking up. But only recently have I started to have it where I am already awake.

    It's such a strange thing to try and describe, so it was nice to read that someone else has experienced it.

    Lymes disease is something that seems to keep popping up, when I mention various symptoms on here.

    I think I may show the doctor a picture of a bite I got whilst doing circuit training outside. I got it in August, and became ill in early september.

    I'm not sure if there's a connection or not. My doctor has never brought lymes up or asked if I'd had any bites. But now I'm thinking it would do no harm to question him about it.

    The bite was a particularly nasty one.
     
    Ren likes this.
  10. jules78

    jules78

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  11. jules78

    jules78

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    I've not had a bite like this before .
     
  12. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I have had several episodes of a similar nature, not recently, but in first 5 years of illness. I didn't have the waking up feeling. In one episode I was driving along a road I travel five or six times a week and all of a sudden I didn't know where I was, and couldn't recognize any landmarks.

    Gradually over the period of five or six secs I began recognizing things as if things were coming back on line. It was as if I couldn't access my memories for a moment.

    I have read articles describing how the eye only takes in a relatively small amount of information (from memory about 10% of data required to form an image), but relies on the memory to fill in the blanks or join the dots. I think it is this process which breaks down.
     
    Ren likes this.
  13. jules78

    jules78

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    Hiya @RustyJ :)
    The only time I've had the waking up feeling is when I've literally just woken up and had one.

    But recently the Times I've been experiencing them I'm already awake. They just sort of come on when I'm doing something.

    They are really strange. It's like I'm here but I'm not here
     
  14. Aerose91

    Aerose91 Senior Member

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    I have had exactly this at least 3 times, first when I had acute encephalitis and then didn't happen again for about a year. I will tense up suddenly like I just got hit by lightening then for the rest of the day i am left very disoriented and confused
     
  15. taniaaust1

    taniaaust1 Senior Member

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    I dont know if what I used to get is a more extreme version of what you are refering too. I used to have like complete mind blank outs where I'd be doing something and then loose awareness completely but not realise Ive lost awareness for a time.

    eg one time I was in the shops and looked in a window... that was the last thing I remembered doing. Then suddenly find myself regaining awareness and realise to my shock that Im standing there just staring into a window, without having any idea how long Ive been there for. I feel very confused when this stuff happens, its unsettling (on that occassion wondering if people had been staring at me as they walked by for just motionless standing there). Fortunately I havent had those blank outs for a while, they went on when I was having more neurological issues eg jerking, spasms, leg drag and other neuro stuff.
     

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