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Is this an MND thing?

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    Is this an MND thing?

    I have been struggling the last four weeks and I'm not sure if it is MND or something else.

    I fall asleep fine. I then wake about 5 hours later from a combination of pain (because I can't turn myself), feeling very hot, sweaty and clammy, very nauseous and a mild headache. I feel really quite unwell when this happens. I drag myself up to a sitting position and eventually it subsides a little (I'm so scared of being sick). Eventually exhaustion kicks in and I doze on and off till morning.

    It isn't every single night, but most nights to greater or lesser extents with a break of a couple of days every now and then. I have no idea what is causing it. Any thoughts?

    I'm not on NIV or PEG. i have recently noticed I cough after eating and drinking. No new medication. Not Covid.
    Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

    Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

    Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

    #2
    TinyLady I’m not sure if it’s a MND thing…but I can totally relate. I feel like I could have written your post! I figured it was the spasticity (cramps and stiffness) and maybe constipation causing the nausea? I have found the tummy trouble has worsened since starting to take Tizanidine.
    It definitely makes things more difficult with broken sleep. I found having a heating pad next to my bed has also helped.

    Comment


      #3
      AngieCanuck - I'm not on many drugs (been taking for a year or two the ones I do take) definitely not constipated. But the nausea and sweating is awful. This is totally new and fairly sudden onset a few weeks ago. I feel fine during the day and after a while sitting upright.

      I hope yours settles. I'm scared of being sick and I can't get up to sort a heat pad, I just drag myself up the bed in a sweaty dribbly state 🤣
      Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

      Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

      Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

      Comment


        #4
        TinyLady A few things to consider:
        • Acid reflux - are you on a stomach liner (PPI) med?
        • Breathing issue - ask for an overnight pulse oximetry test.
        • Perimenopausal?
        • Anxiety/panic attack - please don’t shoot me 😬😬 but they have similar symptoms.
        Either way, it's always advisable to tell your doctor or nurse about these things. xx
        Last edited by Ellie; 5 May 2022, 16:41.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #5
          Hi TinyLady . So sorry you're having bad nights i often wake up because I can't turn and I'm reluctant to wake hubby. Im not in pain however, just very stiff.and restless.

          Forgive me for asking because you don't look nearly old enough but could your night sweats be related to being of a certain age ? My neurogist says to not assume all ailments are due to MND so don't ignore them.

          Hugs to you xx😘🤗

          Comment


            #6
            Ellie Deb thank you for your suggestions.

            I have no other perimenopause symptoms. Part way through (2 weeks ago) I got the implant put in and have noticed no change since either. Would be weird, but possible. It's the bad nausea that is eased by sitting upright that maybe doesn't fit?

            I take lanzoprazole already (I take Naproxen)

            Definitely not a panic attack. I am deeply asleep when I wake and I then feel really hot and sweaty and sick lying down. I had a,panic attack once years ago, nothing like this. When you panic you sort of tingle. I was clammy. It was horrible.

            I think I am due overnight oximetry soon. I will ask my consultant when I see him in a couple of weeks.

            ​​​​​​​This is just so totally unlike me. I normally sleep deeply for 11 or 12 hours!
            Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

            Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

            Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

            Comment


              #7
              TinyLady I really can relate to the difficulty turning at night and your other symptoms do sound very similar to the ones I had when I started to go through the menopause at 42. I would definitely mention to the Dr when you see him.

              Comment


                #8
                Karen62 - thank you, I will check. But I'm surprised if it is perimenopause as it came on fairly suddenly and no other symptoms. I don't think I can cope with nearly vomiting every night for the next few years!!
                Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                Comment


                  #9
                  TinyLady A simple blood test will soon rule in or out perimenopause which, whilst the night sweats might have an explanation, it won't explain the nausea, so you need to find out what is causing the nausea.

                  In the meantime, you could try antinausea/sickness meds - I use Domperidone which I find really effective - and maybe keep a diary, including wha and when t you ate, drank, which meds you took and anything untoward that happened, sounds onerous I know but it might show something...

                  The GP needs to be involved. xx
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    Ellie - thank you. It is really horrible waking up suddenly feeling so poorly, it would be good to find out why. I have mentally kept track and the only thing I identified possibly was eating after 6pm.

                    I've had a full on week that I must update everyone on when I can get my head round it, just in case it helps others. But I need some decentvsleep first to process it myself xx
                    Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                    Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                    Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                    Comment

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