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MND breathing issue maybe?

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    MND breathing issue maybe?

    So for a few weeks now and getting more frequent I have been waking at night suddenly feeling shocked or like I was about to die (loads of vivid dreams). Which is odd. Really not like me to have broken sleep or a feeling of panic.

    I'm currently sleeping propped up on 4 pillows and I can't move at all, but gradually slide down during the night... which also seemed to be making it worse.

    Then last night I just couldn't seem to get to sleep at all. My chest was aching so much and every time I was dropping off, it felt like I stopped breathing briefly, which is waking me back up again!!

    So, originally I put it down to my shoulder pain... but having thought some more and based on the respiratory team suggesting I might need NIV - I'm thinking this could be breathing related, not pain? Any thoughts? Or advise on what I can do because I'm so tired...
    Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

    Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

    #2
    I even asked my physio today if there was evidence of pulled muscles in my back... but he said there wasn't and my carer suggested it could be breathing related....
    Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

    Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

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      #3
      TinyLady have you had your bloods taken for oxygen and carbon dioxide levels. Usually done by taking blood from artery at the wrist(ouch!) or finger oximetry . It sounds possible that you have too much carbon dioxide in your blood stream which makes you feel awful especially at night. NIV sorts all that out. I’d get back in touch with your team to discuss it further. Good luck xx

      Comment


        #4
        Piglet - thanks, the team came here a couple of weeks ago and said there was evidence my breathing was getting weaker. They did check my CO2 and oxygen but want to do spirometry when I go to the hospital. I didn't connect the two things until today... just blamed my shoulder pain. But I now strongly suspect it is my breathing disturbing my sleep.

        I long to be less tired. I sleep at least 11 hours overnight plus a 2 or 3 hour afternoon nap the last few weeks. I have no energy at all, so I'm hoping this is the reason and there is help out there! Was scary when they said NIV... but it is sounding more positive 🤞
        Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

        Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

        Comment


          #5
          That doesn’t sound much like the night-time breathing difficulties I experienced before, or since I started using NIV but that’s not saying yours are not. I might wake regularly but not shocked or panicked.

          I wonder if you could video yourself sleeping or have your partner video you sleeping for a while during the night? There may be a tell tale grunt or jerk just before you wake.

          Could you immediately measure your O2 Sats with a fingertip monitor on waking from one of these episodes?
          Do you know what your CO2 and O2 were? xx


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

          Comment


            #6
            Hi TinyLady what you describe is so similar to how I was - vivid dreams that I still felt part of upon waking - and wanting to nap a couple of times or more in the day, I had to be almost sitting upright with knees bent and a pillow under them to go to sleep though.

            Like others have suggested - please get your CO2 levels checked asap. The NIV is nothing to fear, I am on the lowest setting of room air overnight and it hasn't changed in 8 months - what a difference it makes to how you are in the day and I never need a nap now. xx

            Comment


              #7
              Just to add to the already informed debate. They can do arterial blood tests from the wrist (had a very bad experience up in Newcastle about twenty years ago with a junior doctor trying to do it).

              They can also do it from from the ear, as shown in the results below. The red is when they are not what they should be.

              Interestingly the next time they couldn't get any blood from the ear. So they said, we will do it from the wrist.

              I told them about a previous bad experience and the chap said "I'm a professor, if I don't do it perfectly first time then I won't do it again".

              I didn't feel a thing

              When they take from a line in your arm they are looking at venous blood rather than arterial in the wrist or ear.
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              This gallery has 1 photos.

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                #8
                Thank you everyone. Yes they did check blood from my ear when they came and Oxygen I think too. They examined me as well and did say my breathing was weaker. But although I listened I didn't link it to my current symptoms or mention them.

                Cinderella - that is exactly how I am sleeping these days. Wedged upright with legs on a pillow recommended on here.

                I slept with 5 pillows last night and I think it helped in some ways, but not the most comfortable!

                Ellie - I don't have an oxygen monitor and even if I did I don't think I could quickly get it on my finger! The sudden waking is only part of it, but interesting you don't experience that.

                Im just glad I think I might have figured out what is going on. I won't blame my shoulder pain (or the cat!) for everything 😆
                Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

                Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

                Comment


                  #9
                  Originally posted by TinyLady View Post
                  Yes they did check blood from my ear when they came
                  You don't happen to know the CO2 level, do you?

                  It might be an idea to get your morning carer to slip a fingertip monitor on you when you're still in bed - for anyone with respiratory impairment, a pulse oximeter monitor is a useful thing to have, they aren't that expensive (all relative I know, especially heading into winter of heating our houses)

                  I used a back riser in bed with just one pillow, which I found pretty good. Again, more money, unlesss your OT supplies one 😂😂😂

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

                  Comment


                    #10
                    Hi, I wish I could sleep that long. I always need the loo in the night. I started using NIV in May. I find it very soothing and it helps me get to sleep. It’s on the lowest setting and has a humidifier. I can track my blood oxygen levels on my Apple Watch. It stays fairly constant all night.

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                      #11
                      I've just done a spirometry test. It wasnt the most exciting day out but apparently my breathing is good for my age 66/70. So I'm happy. Im 5ft 1 1/2 and weigh 11 st. Then I had my covid shot. Who says there's no fun to be had in Plymouth 🙄
                      when i can think of something profound i will update this.

                      Comment


                        #12
                        Well my son has just called from Plymouth. He has been on the test boats this morning. So if you see two aluminium motor catamarans hanging around in the Sound he could well be on one of them testing under water probes. If you see a massive remote control boat out on the water, then that will almost definitely have him close by (otherwise they have just lost an expensive bit of kit).

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                          #13
                          I just went to sit on my balcony and eat my pizza and there was 3 very loud explosions. Christopher does he have any idea what caused them?
                          when i can think of something profound i will update this.

                          Comment


                            #14
                            I will check now

                            Comment


                              #15
                              I don't have anything useful to contribute TinyLady​​​​​​. It sounds very unpleasant and I hope you can get some advice/answers/help soon x

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