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    Breathing assessment

    Hi all. I have my results tomorrow re my recent lung function test. Bit concerned as normally I get sent oximetry overnight tester before hand. Not had one this time. I also did a new lying down breath test. I am thinking that my sleep breathing has changed.

    I do oximetry myself and last week it went down to 92 whilst in bed. I also have copd (ex smoker) and I've read that they allow a reading of 88 to 92 re copd.

    My lung function is good at 93% predicted.
    I don't have headaches nor daytime sleeping. But i am tossing and turned most of the night and then hard to wake up etc. My cough is weak.

    Can I ask those that are on niv was it the sleeping bit that resulted in the use of niv?

    Thank you.
    Diagnosed May 2021 bulbar onset als.

    #2
    shelly21 I thought I was sleeping well pre NIV....in fact better than ever....no headaches... 2 pillows...

    Then having tests with respiratory showed NIV was definitely needed if I was in agreement...which I was...I wrote more detail in a previous thread👇🏼👇🏼👇🏼

    1st appointment with respiratory consultant 🗣
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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      #3
      LindaB thank you but it won't open the link.

      I had a feeling things aren't right as I'm fatigued more x
      Diagnosed May 2021 bulbar onset als.

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        #4
        I've found it Linda and thank you as it really helps me.

        Did it take long to get used to niv?
        ​​​​​​​did you find you had more energy?
        Diagnosed May 2021 bulbar onset als.

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          #5
          Took me a few days to get use to NIV. I found it helped to sit in bed watching TV for a couple of hours with NIV rather than try straight away for a whole night.

          I don't know if I feel more energised but I know when I'm tired I'm glad to use NIV....so sometimes I might go for a rest midday and use NIV for a nap...or just a rest on the bed.

          shelly21 hope the results are good🙏👍🏻😘
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

          Comment


            #6
            Thats a great tip re using it at night whilst watching TV. Sort of broke you in gently. Thank you x
            Diagnosed May 2021 bulbar onset als.

            Comment


              #7
              Originally posted by shelly21 View Post
              I also did a new lying down breath test.
              Was that the 93% test result or do you know what that test was measuring?

              Originally posted by shelly21 View Post
              I am thinking that my sleep breathing has changed.
              If you haven't mentioned this to them, do, and also the morning grogginess - ask for an overnight oximetry test, preferably by email, outlining the former reasons.

              Originally posted by shelly21 View Post
              My lung function is good at 93% predicted.
              That's a marvellous reading but did they do a SNIP (sniff) test too - this simple test can be more revealing.

              Originally posted by shelly21 View Post
              Can I ask those that are on niv was it the sleeping bit that resulted in the use of niv?
              For me, it was my rapidly decreasing FVC which prompted the provision NIV (FVC is the test which yielded your "93%" figure), but it is only one criteria in the NIV decision and nowadays, my clinic puts greater emphasis on the SNIP test and overnight oximetry readings.

              I think your COPD complicates things somewhat but I would hope it promotes being proactive, rather than merely being reactive...

              I primarily use NIV overnight and, even if I don't sleep well on a given night, I have more energy than expected the following day. xx
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                Another thing shelly21 I wonder if you could persuade your partner to measure your Sats a few times during one night, preferably without waking you. xx
                ​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
                  Hope this doesn’t complicate things, but my respiratory consultant isn’t too worried about low SATs. He’s been more concerned about my high CO2 readings (tested by blood sample from earlobe). Poor gas exchange in the lungs.

                  High CO2 causes morning headaches, grogginess, exhaustion and the feeling that sleep is no longer refreshing. Over a period of time overnight ventilation improves the CO2 balance. And SATs improve too of course.
                  Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

                  Comment


                    #10
                    Originally posted by PeterPan View Post
                    ... my respiratory consultant isn’t too worried about low SATs. He’s been more concerned about my high CO2 readings
                    I get that, but blood oxygen levels are also important - it's all part of the respiratory process.
                    (plus, it depends on how 'low' the low is)

                    Low oxygen levels also means there is less oxygen available in the gas exchange process, and low Sats during sleep can result in poor quality sleep, causing fatigue and has a negative impact on our quality of life.

                    So, when a respiratory consultant isn't concerned with your Sats (oxygen) level, knowing the effect it has on one getting a decent night's sleep, it doesn't say much about their capacity for empathy...
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #11
                      Ellie I've had snip test every time I've had lung function test. Over last few days if I wake I've been grabbing the tester and it is 92 sometimes 91 or 90.

                      I have been struggling with disturbed sleep since Xmas and I was sort of expecting my recent lft to show something.

                      I will find out more in the morning x
                      Diagnosed May 2021 bulbar onset als.

                      Comment


                        #12
                        Originally posted by Ellie View Post
                        So, when a respiratory consultant isn't concerned with your Sats (oxygen) level, knowing the effect it has on one getting a decent night's sleep, it doesn't say much about their capacity for empathy...
                        I didn’t put it very well. He is concerned about SATs but CO2 level is more elusive and insidious. You can’t measure it at home and a having a high level is a problem. His capacity for empathy is absolutely fine 😀
                        Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

                        Comment


                          #13
                          Originally posted by shelly21 View Post
                          I've had snip test every time I've had lung function test.
                          Any idea what the latest level was? xx
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          Comment


                            #14
                            Hi Shelly

                            My hubby was given an NIV after an at-home sleep test where he was wired up to a machine all night. This was only a month or so after diagnosis so we were just going along with what we were told and I've no idea what his O2 or CO2 levels were... it wouldn't have meant much to us at the time anyway.

                            It took him months to get used to using it. Like Linda he would watch TV in bed at night with it on for an hour or so... then take it off to sleep! Then he was trying to get to sleep with it on but would take it off after a couple of hours. But after about five months he was going all night with it.

                            It was a difficult adjustment emotionally because it felt like a step along the road that we didn't want to go, but actually it did help him a lot. He slept better with it on (and he was always a bad sleeper pre MND). If we had an appointment or visit during the day he would often put it on afterwards to help him recuperate his strength.

                            Our nurse encouraged us by telling us that she'd had a patient using it and functioning well for years (that was before I discovered these forums!)

                            Have been thinking about you, how your appointment re. beds went last Thursday... don't worry about replying if you don't want to. But am thinking of you and hope it went well. x
                            Husband diagnosed October 2020 with ALS. Started with foot-drop and weak grip/visible wasting in right hand. NIV and powerchair user.

                            Comment


                              #15
                              Betty May the bed still is not sorted. I have had to move upstairs to our old bed whilst it's being sorted. I hate this but at least I have a bathroom and half decent bed lol.

                              Basically the bed assessment was done last Friday and they said they will try me with the toto turning system. They said I was getting this in December.
                              I asked them straight out why have I not had it. She said the devices were away being serviced.

                              thank you for the detailed experience you had re niv. I will accept it as I was sleeping well up until Xmas time.

                              I know its upsetting re the idea of it re the road to demise but fortunately I had read and watched videos on breathing my mnd site.


                              If I start niv I need to be back in my new ground floor bedroom and will be waiting on the nhs producing the bed.

                              xxx
                              Diagnosed May 2021 bulbar onset als.

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