Scary weird sensation in brain waking me up at night...

Discussion in 'Fibromyalgia Main Forum' started by goingslowlycrazy, May 3, 2003.

  1. goingslowlycrazy

    goingslowlycrazy New Member

    I wondered if any of you have this rather strange symptom?
    I go to sleep at night (usually very easily) and then am woken up, what feels like a very short time later, by the strangest sensation in my head.
    It's hard to describe but it feels as if the top half of my brain is bumping very fast backwards and forwards inside my skull.
    The first few times it happened I was soooooooo scared, I really thought I was going to die or have a stroke or something.
    Now, when it happens, I just lie still and try to breathe deeply through it.
    Is this a known symptom of our DD or am I just weird?
    Mary x
  2. severina

    severina New Member

    ..when I suffered a major flare last year. It was my first symptom and remained for months. It felt like someone was tapping my brain/skull trying to get out. It was accompanied by eye pain,headaches and a general feeling of nausea - however it passed without meds. My doctor said it was viral, but I know how you are feeling, its very scary.
  3. goingslowlycrazy

    goingslowlycrazy New Member

    Anyone else with bumping brains?
    Mary x
  4. kalina

    kalina New Member

    Hi, Mary!

    I have both CFIDS and FMS, and every time I've been through a major flare, I've had experiences very similar to the sensation you described. Kind of like my brain is "buzzing." I have no idea what causes this, and when I ask my doctors, they just give me a blank look and shrug their shoulders (they've obviously never felt this and have not idea how scary it is).

    The first time anything like this happened to me it nearly scared the cr@p out of me. I was awakened by the strangest feeling -- it felt just like my head went completely flat, like it was being crushed wafer-thin. At the same time, i couldn't move a muscle! This is so hard to describe, because I almost felt like I was leaving my body, and I thought... This is it -- I'm having a stroke or something. Very scary! It passed after what seemed to be forever, but it was actually only about a minute. I eventually learned to expect the unexpected, and like you, I just try to get through these episodes knowing that it's only temporary. You're not alone in this.

  5. loopyloo

    loopyloo New Member

    Hi Mary i have had some really bad headaches and the worst ones feel like thy are just on one side of my head and hurt like hell i've never had a headache like it before its not what i would call a normal headache,and if my neck has been hurting i get a bad headache at the back of my head.
    the doctors always write it down in the UK as a headache of a diffrent kind!!! how many diffrent kinds of headache is there, i mean your head isnt very big, and some times it does feel as if it will explode when it hurts all over.
    sorry its a bit long got carried away!!!!

    Loopyloo xx
  6. 2girls

    2girls New Member

    This has happened to me a few times about 1 1/2 years ago - very scary. I seriously thought I had a brain aneurism or stroke. Don't know why I had this going on but brain MRI checked out ok.

  7. goingslowlycrazy

    goingslowlycrazy New Member

    I wouldn't wish anything about this DD on anyone - but I must admit I was relieved to hear that this is not uncommon.
    I do wonder sometimes if every ache, pain, twinge, odd symptom is always going to be put down to CFS and one day something will 'slip through the net' and not be due to CFS at all...
    But this one sounds like a definite CFSer.
    Just brought back a memory of when I was little - my Mum used to say 'why can't you have normal symptoms for things, like everyone else?' When I had Measles (very severely at the age of six) they called out the Government Health Inspector cos they thought I had something dreadful liked smallpox or polio (can't remember which...)
    Anyway - thanks so much for your replies guys, this board is a godsend!
    Who needs doctors? We are each others diagnosticians, supporters, drug advisors, researchers, friends, counsellors, psychiatrists and anything else in between!
    Mary x
  8. goingslowlycrazy

    goingslowlycrazy New Member

    That sounds nasty - so sorry!

    I do get bad headaches from time to time, almost migrainy in nature and they can put me in bed for hours (they seem to 'get into my eyes' if you know what I mean.

    But when I get this weird sensation thing, it only ever wakes me up at night. I don't ever have it at any other time...and the sensation of the top of my brain literally rocking back and forth very very fast, like a flickering sensation - so strong sometimes that it feels like my eyes are flickering with it....yukky.

    Loopy - I agree, docs are pretty unimaginative when it comes to writing down how we feel. If our experiences don't fit into their 'categories' they are pretty much lost. *sigh*
    Mary x
  9. fibrorebel

    fibrorebel New Member

    Yes, I have experienced some strange symptoms as you spoke of and as I have the different nerve stuff as well, I figure it is the over-firing that causes it. There has been several posts lately re: slight seizure state most of us are in continually, and I am thinking this may be what is causing the strange neuro-stuff. It seems like there is no end to the new weird stuff that pops up as we go in these illnesses. Precisely why I love this board, no matter what you want to know, or need support and is always to be found here.
    love, Rebel
  10. moonflowercat

    moonflowercat New Member

    This will be hard to explain, but here goes. It happens when I'm awake. I suddenly get this sensation in my whole body, including my head, like a low vibrating electrical current. Then my head will nod downwardly, like one nod at a time, until my chin is on my chest. It feels like your body is shutting down, one nod at a time. I'm left very weak afterward, with a bad headache. The only weird thing I have happen when I'm asleep is, I wake up suddenly sitting straight up in bed with the feeling I have forgotten how to breathe. I have to concentrate on taking a gulp of air. Then breathing is OK, just the fear remains. Panic attack?

  11. Nikki

    Nikki Member

    I wonder if some of you are suffering from sleep paralysis, a period of inability to perform voluntary movements either at sleep onset (as in my case) or upon awakening. I have suffered from this in the past. I don't have narcolepsy (which it's often associated with), but I believe this is probably another symptom of FMS since it is usually a suppression of skeletal muscle tone, a sleep onset REM period or dissociated RMS sleep. Even tho it is not harmful (try telling yourself this when it is happening) it is very, very scary.

    Just curious if anyone else has experience this.
    [This Message was Edited on 05/05/2003]