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    Sleep patterns

    Believe it or not but I wake up on the hour every hour up to midnight. After midnight it's either two or three hours between waking up. If I get up before 7am no headache. After and it's para time. πŸ˜πŸ€—βœŒοΈπŸ˜˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    Doesn't sleep have rhythms where we go in and out of deep sleep. I tend to wake up about 1-2am no matter what time I go to bed. I do agree with you about sleeping later I've woken up with a terrible headache and feel terrible.
    last night I had a really horrible dream someone was following me and someone else grabbed hold of my throat. I was so terrified it woke me up. πŸ™
    when i can think of something profound i will update this.

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      #3
      Well just be thankful that you don't wake up with pain in every joint in your body or agonizing pain in your tounge.
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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        #4
        I know Matthew I'm sorry I didn't mean it like that I was sympathizing with the stuff I can share. 😘
        when i can think of something profound i will update this.

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          #5
          matthew55
          Do you think you slept better when you used the NIV at night ?

          I stopped wearing the NIV and I wake a few times a night with dry mouth..I have a sip of water and get back to sleep quickly.I never wake up to start my day before 8.I get 8 hours sleep or more .
          When I used the NIV I woke a lot more and had trouble settling back to sleep.I just could not tolerate the NIV.

          Have a good day
          Best wishes
          Mary

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            #6
            Stephen sleeps better without his niv. Glad you're having better nights Mary.
            😘
            when i can think of something profound i will update this.

            Comment


              #7
              I haven't used NIV for months and I'm still not short of breath.
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                #8
                Are you going to bed too early maybe?

                I thought your new meds were giving you better quality sleep, I'm sorry that isn't the case. I know we've talked about getting a proper bed and mattress before and, if meds are not, nor cannot, reduce your pain, maybe it's time to improve the physical comfort of sleep to give it the best shot.

                Sleep is so important to us and you deserve it as much as anyone. πŸ€—πŸ€—πŸ˜˜πŸ˜˜
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                ​

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                  #9
                  The new meds only worked for two nights. Apparently my mattress is the only one available. It's about 6" deep and allegedly alternating air. I'm not having much luck am I? πŸ˜πŸ€—πŸ˜˜πŸ˜xx
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                  Comment


                    #10
                    Originally posted by matthew55 View Post
                    Apparently my mattress is the only one available.
                    I'll bet it's the only mattress which is easily available - the NHS has access to many different ones 😑😑

                    Originally posted by matthew55 View Post
                    It's about 6" deep and allegedly alternating air.
                    Which one is it? It should be on the pump control unit. xx

                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    ​

                    Comment


                      #11
                      It's supplied by the council and they only have one type. My neuro nurse checked it and told me it was alternating. Apparently they are going to service it.
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                      Comment


                        #12
                        bicycle repair kit?
                        when i can think of something profound i will update this.

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