Is sleep disturbance/autonomic dysfunction a feature of Hughes Syndrome?

For the past 8 years I have suffered from very disrupted sleep - sleep onset difficulties primarily but also periods of waking in the night and being unable to get back to sleep, plus sometimes odd upward 'surging' sensations in my solar plexis area (as though having a horrible rush of adrenaline) and 'feeling' noises in my head as I am trying to get to sleep. I would be interested to learn whether this is a feature of Hughes and/or whether others experience similar symptoms and any tips they have for minimising them.

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  • I don't sleep well either. I wake in the night and then keep waking every hour or so. Consequently, I hate sleeping! I have heard from others on this site that sleep disruption is a problem many of us share with hughes syndrome.

  • Hi there

    I have dreadful sleep at times, actually if in flare of anything, some predictable and some not, it affects my sleep, I find if my room is nice and ventilated, (I prefer warm bed, and cool room), this helps, and also that I have taken something for pain as and when it is needed. However my biggest improvement in my sleep came when getting my Thryoid sorted out, as undiiagnosed thyroid problems, which often slip through the net due to unreliable testing and narrow parameters, cause terrible and unremitting insomnia in many people. Best wishes. Mary F x

  • As far as I know all of us have sleep issues. Especially if there were brain and neural damage..I tend to get really stupid and foggy if I don't get enough sleep so I also take naps when I can. I finally gave in and thru the judeous use of sleep meds was able to get sleep 2-3 nights a week. Changed my life.

  • I'm up every couple of hours during the night. No idea if it is related to Hughes or not

  • Yeah pretty much the same for me, I try not to get out of bed, but I'm awake 3 or 4 times a night, which doesn't make for a competent person the next day! Sarahx

  • Thank you all for your replies. Clearly I'm not alone with the sleep thing, although I'm sorry others are experiencing difficulties too. Don't know about you, but I wistfully think back to the days when I simply got into bed, felt tired quickly, fell asleep quickly, and miraculously stayed asleep until morning.....

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