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    Sleep & Respiratory appointments

    I've got a sleep lab and respiratory appointment an hour apart tomorrow an overnight monitoring device to take home for return the next day.

    What sort of questions to ask?

    Overnight blood oxygen % has been on a declining trend the last 6 months and sleep.is disturbed a couple of times most nights and lethargic start to mornings,feeling knackered before getting out of bed.
    Steep hills seem to be a bit short of breath now and then.
    Also not sure if chest muscle spasms are also a previously observered hiatus hernia adding to probs.
    2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
    Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

    #2
    Arcadian I can't really offer any sensible advice about questions to ask.

    I can say that having four curlywurly's last night meant that I got to sleep before three this morning.

    Also I now have custard to go with gluten free treacle pudding.

    I am sure there are some more sensible people that will advise you..

    Take some snacks.

    Oh, I will say that they said to me at the last hospital respiratory appt I had that my SpO2 wasn't rising above 90. I said "no, what were you expecting". That was the end of the appt

    Comment


      #3
      i won't comment about being able to walk up steep hills.

      I could be rolled down one if there was cake at the bottom.

      Comment


        #4
        Ok, today it is triple chocolate cookies. Only half a pack with a drink.

        Comment


          #5
          Hi Arcadian I'm not sure what you should ask. The disturbed sleep sounds like sleep apnoea but then I'm not sure what causes sleep apnoea so I'm pretty useless.

          I've just had a spirometry test and he was pleased with my lung function so what I don't get is why I feel out of breath. I never know when does it become heart rather than lungs.

          Gets me when I phone the GP surgery and they ask what the problem is? Thats why I'm contacting them!

          Ellie will be along soon I'm sure she knows what to ask. Xx

          Ignore Christopher he's just full of crumbs.
          when i can think of something profound i will update this.

          Comment


            #6
            Cheers denise - compressed date range in the pic for night time range, but don't understand from my own records why there is an improvement in June then a step down in night time average (month by month resolution has better detail regarding downward trend)
            Attached Files
            2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
            Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

            Comment


              #7
              Did you go anywhere in June? Do anything different? It was one of the hottest on record which I thought would do the opposite but then we eat differently in hot weather but then I'm pretty sure July and August would also have been the same. That's a mystery. This is when you wish you'd kept a diary of everything. 🤔
              when i can think of something profound i will update this.

              Comment


                #8
                Originally posted by denise View Post
                Did you go anywhere in June? Do anything different? It was one of the hottest on record which I thought would do the opposite but then we eat differently in hot weather but then I'm pretty sure July and August would also have been the same. That's a mystery. This is when you wish you'd kept a diary of everything. 🤔
                I mostly do keep notes regarding medical stuff, work, travel, or anything odd socially.
                But the only slight difference for June was away from home a few nights more than normal and increased travel and social stuff (although that usually impacts negatively for non-MND health issues - that month everything was deliberately paced more leisurely and less deadlines or fixed schedules).
                2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
                Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

                Comment


                  #9
                  Could be you felt more relaxed being away and with others. Perhaps not thinking about things and feeling calmer you felt better. Goodness knows what our brain gets upto when its feeling a bit stressed or what causes it like food, temperature, something on TV, family and friends. Shame you cant repeat June. Whatever it was it was positive. 😘
                  when i can think of something profound i will update this.

                  Comment


                    #10
                    Originally posted by Arcadian View Post
                    ... compressed date range in the pic for night time range,
                    How were you monitoring your SpO2 levels Dan, and was it continuous throughout the night or sporadic?

                    It could be down to periods of hypoventilation, so that is one question to ask. If the purpose of a test is not explained to you, feel free to ask what the test is for/signifies.

                    Other than that, if you get a copy of the results, they're good to have as a benchmark for future testing and to drill down on the data at home, if you want to.

                    If they're hesitant to hand over a hard copy, you could take a photo of the printout(s).

                    At the end of the day, numbers are just numbers. Yes, they have meaning, but of more importance is how one feels today, so don't let data govern your days. 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
                      Arcadian Perhaps there were more allergans floating around in June, or a change in relative humidity.
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      ​

                      Comment


                        #12
                        Originally posted by Ellie View Post

                        How were you monitoring your SpO2 levels Dan, and was it continuous throughout the night or sporadic?
                        ...
                        At the end of the day, numbers are just numbers. Yes, they have meaning, but of more importance is how one feels today, so don't let data govern your days. xx

                        Continuous through the night whilst asleep and the upper and lower levels indicated as a range over that time.
                        Generally seems to improve when I get up and about / active - seems to be low when prolonged lying flat / sleeping.

                        Regardless of accuracy / precision, it's the declining lower trend over the last few months that is indicative of change.
                        Unfortunately no baseline was taken at intial diagnosis in March. Recent Spirometry wasn't a massive concern, but "not as good as expected".
                        I also have a pre-existing diaphragm muscle problem and generally haven't felt great when waking up for the last few months (headaches, limbs feeling weak / hollow).

                        When it started dropping below 80, GP said to go to A&E, but they just seemed to concentrate on heart attack risk because of how my limbs felt around the same time.
                        (Extensive heart checks for other reasons show no concerns).
                        Last edited by Arcadian; 18 October 2022, 16:46.
                        2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
                        Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

                        Comment


                          #13
                          Originally posted by Arcadian View Post
                          Continuous through the night whilst asleep and the upper and lower levels indicated.
                          Using what type of sensor?

                          Originally posted by Arcadian View Post
                          Recent Spirometry isn't a massive concern, but "not as good as expected".
                          I also have a pre-existing diaphragm muscle problem
                          Are those two statements related? If you're not aware; during REM sleep, which is when we dream, our entire breathing effort is undertaken by our diaphragm muscle alone. During other sleep phases, the intercostal and accessory muscles join in.

                          When you say you "haven't felt great" these last few mornings, how have you felt, if you don't mind me asking? 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
                            Optical / inferential monitor scanning 4 times a minute (sports watch - ironically the 'tech' to do that is part of my original work background in test / measurement labs).

                            Haven't felt great in mornings the last few months - it's only since referral to MND MDT that there's been much interest.

                            Before getting out of bed, upper inner legs feel particularly 'hollow' particularly when low reading overnight.

                            Diaphragm has been a problem about 8 years (hiatus hernia, GORD, weird hiccups now and then).
                            2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
                            Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

                            Comment


                              #15
                              Originally posted by Arcadian View Post

                              Generally seems to improve when I get up and about / active - seems to be low when prolonged lying flat / sleeping.

                              (Extensive heart checks for other reasons show no concerns).
                              If your SpO2 improves when you are active it shows that you do not have an issue with the muscles used for breathing, or your ability for efficient gas exchange.

                              The lower SpO2 levels at night would indicate more that a local factor in your bedroom is potentially causing you an issue. Allergy to materials in pillow, mould in house, badly vented heating system. This would also tie in with what Ellie said about more allergens being around in June, when you mentioned that your levels were lower then. So high pollen counts etc.

                              In my office I would constantly have an air filter running as well as a CO2 sensor.

                              Stay safe and well.

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