The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Poll: do you get unusual symptoms when vigorously shaking your head?

Discussion in 'General ME/CFS Discussion' started by A.B., Nov 3, 2014.

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Do you get unusual symptoms when vigorously shaking your head?

  1. Yes, every time.

    14 vote(s)
    73.7%
  2. Yes, at times.

    2 vote(s)
    10.5%
  3. No, never.

    3 vote(s)
    15.8%
  1. A.B.

    A.B. Senior Member

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    For me, shaking my head vigorously even just for a few moments causes instant headache and a discomfort that is difficult to describe. Traveling in a car on a bumpy or serpentine road is very unpleasant for this reason. I'm curious how common this is among CFS patients. The severely affected will probably be sensitive, but what about the rest?
     
    Wildcat likes this.
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Do you count dizziness as an unusual symptom? Disorientation? I can't remember whether I got these when I was 'normal'!
     
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  3. A.B.

    A.B. Senior Member

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    Good question. I think some degree of dizziness is normal because I remember getting that as child. We could define "unusual" to mean symptoms other than dizziness, that were not there before the illness.
     
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  4. JaimeS

    JaimeS Senior Member

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    Gosh, when I was at my sickest, I couldn't turn my head all the way to the side. I got dizzy and it ached. I stopped shaking my head vigorously so long ago that I have no idea what would happen if I did! If I had to guess, I'd say I'd go over like a sack of beans and hit the floor. :p
     
  5. Sasha

    Sasha Fine, thank you

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    I think this might be to do with orthostatic intolerance, perhaps.
     
  6. leela

    leela Slow But Hopeful

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    I can't answer the poll because I never ever do that! I reckon I'd fall over and maybe throw up.
     
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  7. JaimeS

    JaimeS Senior Member

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    @Sasha - definitely. But what is causing it? For me, there appears to be a kind of, uh, encephalomyelitis/ meningitis that I'm continuing to fight off, if not effectively, than in a way that keeps me from keeling over dead (and this is good). The back of my neck always hurts to some degree, and that has to be due to inflammation at the site, or at least from my limited knowledge I should think so. I had a doc try to tell me it was muscle tightness, but actively relaxing the muscles or getting a massage doesn't take care of the problem. There's something there. Plus, everyone knows what a tight muscle feels like! The base of my skull feels tight, feels like it's burning, gets hotter than the rest of me when I'm especially ill... ugh. Very little room for doubt that I have an infection and that's one of its favorite spots to hang out.

    @leela - Despite the fact that I would never do this now, one of my first symptoms was profound orthostasis when I turned my head too quickly. I can extrapolate what would happen if I performed the action the OP describes! I picked #1.

    -J
     
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  8. Scarecrow

    Scarecrow Revolting Peasant

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    I get something like sinus pressure and bright flashes (sometimes).
     
  9. Sasha

    Sasha Fine, thank you

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    Actually, isn't this headshaking thing one of the diagnostic criteria for migraine?
     
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  10. Scarecrow

    Scarecrow Revolting Peasant

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    How so?
     
  11. Sasha

    Sasha Fine, thank you

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    I thought it was on the list but maybe it's sinusitis? And don't want to scare anyone but on this page it mentions it as symptoms of a possible brain tumour! Possibly time to stop consulting Dr Google...

    Sure I've seen it somewhere recently.
     
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  12. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Well, I just shook my head vigorously, which felt unpleasant, made me dizzy and caused a grinding sound in my neck. Interesting that @JaimeS's has the neck 'tightness' that I get. I used to think it was muscle tension, but am dubious about that now. I often get neckache when I get headache - both usually mild. I was diagnosed recently with migraine, but am not 100% sure if it is correct. I had had a brain scan following a possible (albeit doubtful) TIA, and have previously had a couple of bouts of visual disturbance that I self-diagnosed as scintillating scotoma, which the neuro thought was also indicative of migraine.

    For many years I have been unable to turn my head while walking or standing without losing my balance unless I support myself with something.
     
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  13. JaimeS

    JaimeS Senior Member

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    Haha, well-put, Sasha!

    I'm far too afraid to try this. Mine grinds as well, and feels like it needs to pop all the time to relieve the pressure. When I'm feeling better it pops like crazy. When I'm feeling really bad, I can't turn it far enough to pop it. :(

    Ditto!

    Common finding in ME is punctate white matter lesions in the brain (one of our scarier findings). Both times I've gotten an MRI there's a lot of dubious "...could be due to migraine, maybe?" and I get a lot of doctors asking if I have terrible migraines. While I've had a handful over the course of my lifetime, I've never had them chronically. I think it's more like a finding that is indicative of ME but that a doc untrained in spotting the illness will tend to mistake for migraine. Still, the dubious tone of write-ups tells me that it doesn't look exactly like migraine, but rather that's the closest the analyzer of the MRI can come to something they recognize.

    -J
     
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  14. unto

    unto Senior Member

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    hi, I too have a headache if I shake vigorously but not always;I noticed a few years ago and since then use this as a test to understandthe health of my head ......., that is if it does not hurt to say that everything is fine,if after the shaking is very painful to say that already I have a headache or that it takes very little to get him, so in this case I try to shelter the head / neck from the cold,

    if sudo in the back of his head / neck try to dry off with the phone, I'm careful to eat light because I noticed that our headaches can sometimes be triggered by digestion.our headaches can strike: the head and neck, the band above and behind the ears, even the top, sometimes from the top, down the neck and front of and behind an ear as if it were due to inflammation of a nerve ...other times it seems to be inflamed both the brain (meningitis, encephalitis)I think we have an inflammation of viral origin probably at the origin of the ME.

    forgive me .... I translate with google ...good night
     
    Last edited by a moderator: Jul 18, 2015
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  15. Snookum96

    Snookum96 Senior Member

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    It feels like my brain is shaking around inside my skull. I'm not going to try that again.
     
  16. panckage

    panckage Senior Member

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    This isn't quite answering the question, but when I have bad OI I find walking like someone who has a messed up hip (head and upper torso swing to the left and right heavily) actually helps rid the dizziness when I walk. Don't think I would do it to walk around town, but it really helps if I just need to goto the bathroom or get something from the kitchen haha
     
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I understood most of your message, but could you clarify - by 'sudo' do you mean sweat? I think that the word 'phone' may have been the wrong word.
     
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I used to get that feeling a lot when, for example, bending my head and neck low, e.g. to try to find something under a piece of furniture. I rarely get it now. I theorised that it was something affecting the meninges, but never came to a satisfactory conclusion about it.

    BTW I haven't done the poll, as the symptoms I get aren't really unusual - just exacerbations, or things that I also get at other times/occasionally.
     
  19. Snookum96

    Snookum96 Senior Member

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    Did you ever get it when you were standing still? Sometimes I'll just be sitting here and it feels like my brain moves from one side to the other very quickly. It only lasts a split second. My vision goes with it, as if I've moved my head but I haven't.
     
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  20. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Not that I can recall, but I may have forgotten! When it happened while I was bending down it was painful. Maybe I have had milder versions of it when just standing or sitting.
     
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