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Can only sleep on my right side

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    Can only sleep on my right side

    Does anyone one else have problems breathing whilst sleeping on their back or left side. I have tried both to alleviate the possibility of pressure sores on my right side - but very quickly develop breathing anxiety and need help to turn back to my right side where I get relief for breathing anxiety but eventually develop mild hip pain. Rinse repeat as they say........

    Anyone have a solution? I take pain killers and morphine (oramorph).

    Kind regards

    Chas

    #2
    Hi Chas

    Have you tried sleeping in a more upright position? By that I mean sitting propped up by pillows. That may help. Good luck!
    Dina

    Trying to keep positive, but not always managing.

    Comment


      #3
      Hi Chas,

      Sorry to hear of your woes.

      There are many ways to get a comfortable night's sleep, eliminating pain and breathing anxiety. Now for the questions

      What's your bed set-up - do you use a profile bed, mattress type?

      Does your nurse know you're at risk of developing pressure areas?

      Did you opt to use NIV and if you do use it, have your settings been recently reviewed? If you opted not to use NIV, perhaps your Oramorph dose needs to be increased.

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

      Comment


        #4
        Hi Gillette and Ellie,

        I have a profiling bed with a 'pressure relieving mattress' - doesn't do much for the pain though. We have put a mattress topper on top and that works quite well.

        Pressure sores are inspected for by my good lady - a recently retired community matron and respiratory specialist. I am not using NIV for now but have a cough assist to use if required.

        I have just had a review of meds by my GP and he as added further meds to help with anxiety. Seems to be working quite well - no more anxiety attacks.

        I use oramorph and amytryptolene to help with the breathlessness too.

        Result - I sleep well without too much pain.

        Next step is to try short spells on my left side. When I sleep on my back it feels like I have someone sitting on my chest.

        I'll let you all know how this experiment goes.

        Kind regards

        Chas

        Comment


          #5
          How fortuitous to have your good lady with such valuable experience Chas.

          If the pressure relieving mattress is not doing its job, your community nurse should organise an appropriately comfortable one for you (irrespective of the fact your skin integrity is being closely monitored!)

          I'm glad your anxiety is better controlled but I wonder if NIV use would alleviate some of your issues and make your nights more comfortable, especially that elephant sitting on your chest, unless of course you don't want to use it.

          Anyway, good luck with your new regimen.

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

          Comment


            #6
            Thanks Ellie. I am blessed with 2 nurses in the family - Mags my wife of 46 years and our daughter Andrea - also a nurse.

            We have a plan for NIV - being monitored for now on a regular basis and if anything changes we will act accordingly - but so far no need. Will be trying other positions - so to speak - to see if my new meds will help in that respect.

            Kind regards

            Chas

            Comment


              #7
              Hi Chas,

              I have an airflow pressure relieving mattress and have been told by several healthcare professionals that, apart from pillows and a flat sheet, nothing should be placed on top as it stops the mattress doing its job properly.
              Dina

              Trying to keep positive, but not always managing.

              Comment


                #8
                Hi Gillette,

                We have been told that too. The pressure relieving mattress I have is a solid foam affair - and I really can't sleep on it without getting a painful hip. Hence the topper - works really well for me. Airflow mattress I would agree might not work as it should with a topper in place.

                I often wonder if the designers of these mattresses ever have to sleep on it for any length of time?

                Kind regards

                Chas

                Comment


                  #9
                  Hi Chas,

                  I was thinking about you in the wee hours this morning as I was doing some shoulder movement exercises to while away time !!

                  I have minimal movement but can just about do sets of shoulder rolls whilst laying on my back, which I follow by trying to bring my shoulder blades together. These shoulder blade movements have a Brucie Bonus as, by bringing the blades together, I stretch the chest muscles open, enabling deeper breaths. I do these exercises before I sleep, before I get up and if I find myself awake in the middle of the night.

                  I wonder if you'd be able to do a few sets of these if you get panicky or feel anxiety coming on? I also find the simple act of counting the movements distracts my mind and I definitely relax my intercostal (chest) muscles, allowing for deeper breaths (it's all relative - when I say "deeper breaths", I mean using 15% of my lungs instead of 10% )

                  Re mattress: don't be shy in asking for an alternating air mattress. I'd be lost without mine and sleep pain-free, on my back, all night.

                  Love Ellie.
                  Last edited by Ellie; 20 November 2019, 13:46.
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    I wonder how many of us will be doing shoulder rolls and bring shoulder blades together as we read Ellie's post? I did and will be doing them in bed tonight.

                    Comment


                      #11
                      Miranda, every little helps !
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #12
                        Well, strangely enough I am – or should be.

                        I was told to do them by my PT as part of the exercises to clear up a damaged rotator cuff in my left shoulder, which is still niggling away. But I haven’t been doing them as often as I should. Thanks to Ellie, I can now see they would indeed help my chest muscles as well. So I’ll be a bit more rigorous in my exercise schedule from now on.

                        Welcome home Ellie!

                        Hugs

                        Doug
                        Diagnosed April 2017

                        Comment


                          #13
                          Doug, I have a tear in the rotator cuff of my left shoulder too. Very painful sometimes and sore all of the time. Have exercises helped or worsened your shoulder pain? Lynne
                          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                          I'm staying positive and taking each day as it comes.

                          Comment


                            #14
                            Hi Lynne

                            They help, but you have to be careful.

                            The big improvement was from a steroid injection, though.

                            Doug
                            Diagnosed April 2017

                            Comment


                              #15
                              Originally posted by Sportingmac View Post

                              Next step is to try short spells on my left side. When I sleep on my back it feels like I have someone sitting on my chest.

                              I'll let you all know how this experiment goes.

                              Kind regards

                              Chas
                              Hi Chas;

                              Hope that spending a little bit of time on your left side helps a lot.

                              I hate the thought myself of having a breathing mask on at night time but if your chest is that bad laying on your back then maybe the time has come to try one, even for a couple of hours and then go onto your side.

                              For well over a year I have had on average one head ache a month that is due to CO2 and fear it getting more common but it hasn't, YET.

                              Love Terry
                              TB once said that "The forum is still the best source for friendship and information."

                              It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                              Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                              Comment

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