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This topic has 10 replies, 6 voices, and was last updated 1 year, 11 months ago by Kevin Schaefer.

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    • #17626
      DeAnn R
      Keymaster

      I was wondering, has anyone has ever done a sleep study?  A doctor mentioned it once, but I’m not really comfortable with how knowledgeable my local docs are with SMA so never followed up on it.  I’m guessing all that would be accomplished is suggesting BiPap, but not sure I’m ready for that either.  If you’ve done one do you feel it was beneficial?

    • #17630
      Kevin Schaefer
      Keymaster

      Oh I’ve done many over the years. It comes with seeing a pulmonologist regularly. They’re a pain in the butt, but they have helped me. I wear a BiPAP regularly, and in 2011 I had a surgery to clear the airwaves in my throat. Both of these have helped improve my sleep drastically. Sleep studies aren’t fun, but they’re good to do nonetheless. Talk to your pulmonologist more about it, but I would recommend doing at least one.

    • #17646
      Halsey Blocher
      Participant

      I did quite a few sleep studies when I was younger. My pulmonologist doesn’t current think they are necessary, but they were beneficial in the past. That was how we determined that I needed a bipap. I now use a ventilator, but the bipap served me well from the age of five to thirteen. I agree with Kevin that it would probably be worthwhile to do at least one. I will warn you though, you will – ironically – not get much sleep. It takes awhile to set everything up, and the tech come in and out of the room a lot throughout the night. See if there is a sleep lab with a smaller number of rooms. The fewer rooms, the quieter it will be, and the more time they will have to dedicate to getting you set up. I always tried to go to the sleep lab that only had two rooms. We were often the only ones there.

      • #17657
        DeAnn R
        Keymaster

        Thanks for the tips Halsey.  Still on the fence, so we’ll see.

    • #17714
      David Z
      Participant

      If you’re on the fence, you could do what I did. Not wanting to go through a sleep study without cause, I bought a pulse/ox with data logging to record second-by-second data throughout the night. (Let me know if you want more info.) I saw my ox was dipping at times and my pulse would start racing, so I never was getting good restful sleep. That led me to see a pulmonologist, get a sleep study, and get a BiPAP. The sleep study wasn’t too bad considering, especially since I sleep during the day and had the study then also, so I had the place all to myself.

      • #17725
        DeAnn R
        Keymaster

        Ah, so you’re a night owl David.  Monitoring pulse ox probably isn’t a bad way to go about it.  Of course that would require me to get one, ha ha.  So far I just use an app on my phone that I found by accident.  I’m sure it’s completely accurate (eye-roll.)  I’m slightly anti-doctor, so I just don’t know what I should do as opposed to what I need to do if that makes sense.

        • #17810
          David Z
          Participant

          For what it’s worth, a data-logging-capable pulse/ox can be had for $60-120 online. It’s not too hard to use.

    • #17729
      Adnan Hafizovic
      Participant

      I never do sleep study but I agree that we must do that.If we don’t good breathe in the sleep we will tired during the day.I noticed that on my skin.I haven’t so much problem with breathing but sometimes I feel that fatigue due to lack of oxygen,specially in the morning.

    • #17789
      Krystal
      Participant

      I heard it’s becoming standard care for SMA patients to get a sleep study, BUT that depends on if the pulmonologist thinks its appropriate. My 15-month daughter recently saw a pulmonologist, and after assessing her and asking me questions about her sleep, he does not think she needs a sleep study at this time because her chest x-rays are clear and normal, and she appears to breathe fine at rest during the day. However, since he doesn’t know how my daughter sleeps, he does want an overnight pulse ox study to see if she needs some ventilation assistance during night time. While you are asleep, you don’t even realize if you’ve stopped breathing or not (sleep apnea), but if you’ve been diagnosed with sleep apnea, you then start to realize “Oh, THAT’S why I am tired all the time!” So I think being evaluated via pulse ox or sleep study should be something to consider, not to make you get on a BiPap necessarily, but to help provide a baseline and see how you’re doing.

    • #17832
      DeAnn R
      Keymaster

      Another sleep study question. I know it’s not meant to be comfortable, but how do you get comfortable enough in a different bed to sleep? I joke that I’m like the Princess & the Pea because I have multiple layers on my bed to make it soft enough.

      • #17850
        Kevin Schaefer
        Keymaster

        Unfortunately they don’t make it easy for people to be comfortable during sleep studies. The beds are just standard hospital beds, but with all the wires and tubes they put on you, it’s hard to get comfortable.

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