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    #16
    Apparently getting a letter from Trust in next day or so about the recall. How is a Nippy different? x
    Diagnosed July 2020, ALS bulbar onset.

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      #17
      Originally posted by Heather R View Post
      How is a Nippy different? x
      No difference Heather - Nippy is merely a brand name, does the same job. 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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        #18
        Yes the person who fixed me up with the Bipap was fairly dismissive of the safety notice, saying the advantages really outweigh the disadvantages. Now I have had a letter from the Trust saying MHRA advise continuing to use these devices. MHRA have supposedly had no safety issues reported in the Uk with these devices. Only someone with a rare form of occupational asthma related to isocyanates should move to alternative device now. Also, If you are using an ozone cleaning device you should stop immediately. Otherwise we continue as normal until Philips is ready to replace our devices.
        Outside the UK, apparently there have been reports of headache, throat irritation, cough, nausea, and vomiting.
        For me, I initially thought I was having more energy when I used the NIV at night, but sometimes I have thought my throat felt irritation in the morning (before I read this in the safety warning), It also seems to me that I have also lately choked more often.......I suppose it is inevitable progression, but could be from more throat irritation I suppose. Oh well, I plod on with it x
        Diagnosed July 2020, ALS bulbar onset.

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          #19
          That's good and bad news for you (I think), Heather.

          If you feel strongly about the throat irritation, I wonder would the hospital either swap the Philips for a Nippy, or even just a 2 week trial of one to figure out if the irritation is specific to the Philips. 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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