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    #16
    Doggymama morning sounds worrying for you both. I wonder if youre yet linked in to your local hospice...they are very good at home visits and support. Maybe e-mail the MND specialist and tell them of your concerns.
    Best wishes xx
    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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      #17
      Good morning,Doggtmama
      Really hope your husband gets an assessment today and some advise.I guess as yet he isn’t linked to a respiratory team at a hospital as a recent diagnosis.
      Maybe start with the GP.As Ellie said carbon dioxide build up the blood can lead to waking with headaches.I don’t know what the treatment would be.
      I just know every time I go to the respiratory assessment they measure carbon dioxide and ask about headaches.
      Best wishes
      Maryx

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        #18
        Doggymama Have you a fingertip monitor to measure his oxygen levels (pulse oximeter)?

        The 'cure' for headaches caused by CO2 retention is to use non-invasive ventilation (NIV) I wouldn't be too quick to blame MND for all of this...

        Hopefully he will get input from his GP or other HCP.

        Best wishes 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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          #19
          Thanks Ellie, I’m wondering if stress and anxiety may be to blame. He has had a bit better day today. Headache wore off quite quickly this morning xx
          Carer for my husband who was diagnosed with ALS on 15.12.21.
          Trying to think of only today and tomorrow
          Alison ♥

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            #20
            Originally posted by Doggymama View Post
            I’m wondering if stress and anxiety may be to blame. He has had a bit better day today. Headache wore off quite quickly this morning
            At least he had a better day today.

            Stress could be a contributing factor for sure - sending his BP sky high; causing tension heaches; altering how he breathes etc.

            Sleeping with his head/upper body may help his overnight breathing.

            Keep an eye on him. 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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