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So so tired

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    Hello Kayleigh
    Yes, I am catching up on some needed sleep. All seems strange this feeding lark. But I will get used to it.
    Love Sheila x


      On the 5th I was so tired even though I slept the best night for years. For a couple of days my tiredness got worse and I felt hot all of the time, requiring a fan and a cool room to be ok. This continued for 2 or 3 days. My temperature was quite normal during this time. I could not watch TV or use the computer etc, and I couldn't stop my legs especially the top front muscles tensing up and causing pain long term.

      I also lost any appetite and could not eat a found it hard to drink. I had some headaches during that time but put them down to the virus. Had one nap in a chair when I woke up with a probable CO2 headache.

      We went to the doctors Wednesday, he checked me out saying that my lungs are clear and my pulse throat etc where normal. He also sent a swab of my feeding tube area and sent it away with a water sample just on a off chance because I was concerned about them. We spoke about the difficulty in getting a flu jab and he done that as well.

      Over the whole time I not had or other flu or cold symptoms and I have been slightly improving the last couple of days.

      Last night I woke up to four bad headaches that improved and pretty much went away within thirty minutes. This means that I have CO2 building up.

      My breathing has been pretty much the same for two years and every month or so I have a headache due to CO2.

      I normally spend some of the time on my side where it is probably easier to breathe but because I hurt my back two weeks ago I have not been able to do so.

      I am very concerned that the virus is still around and for some reason affecting my breathing now. I have sleep apnoea so might be making that worse.

      Over the last two days I've been eating and drinking well and not feeling hot very often.

      Love Terry
      Last edited by Terry; 14 December 2019, 13:42.
      TB once said that "The forum is still the best source for friendship and information."

      It will only remain so if new people post and keep us updated on things that work or don't work and tips.

      Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.


        Hi Terry,

        I’m sorry to hear that you have not improved and still appear to be shaking off the virus. This time of year is so difficult for us trying to avoid viruses when we have a weakened immune system. I assume you have a way of measuring your CO2 levels. Have you considered NIV?

        I hope you are soon back to the normal TC we love.

        I’m going to do this even if it kills me!


          Hi Terry

          I’m sorry you’re having a tough time. Have you thought about ringing your MND nurse and/or respiratory nurse about your breathing? It would be a good idea to have it checked out sooner rather than later.

          I hope you feel brighter soon.


          Trying to keep positive, but not always managing.


            Hello Terry,

            So sorry you have been having such a rough time. Here's hoping you are on the mend soon and back to your usual wonderful self.

            There are lots of horrible viruses at the moment so it becomes hard to know the cause but
            do get checked out again if you are unsure.

            Hugs to you,
            Love Debbie x


              Sorry about you having a virus. No wonder that you weren't in the mood for eating. I'm glad that you feel a little better. You probably would benefit from a NIV (not sure if correct term) at night, to help with reducing your C02. Lynne
              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

              I'm staying positive and taking each day as it comes.


                So sorry you've been poorly Terry - hoping now the virus is nearly gone.

                I don't know if ALS-related CO2 retention headaches would be that infrequent though?

                As you've also got sleep apnoea, I'll join in on the advice to get breathing tests done, or at least an overnight pulse oximetry test in the comfort of your own bed.

                Sending you a big hairy hug to help you keep warm in this cold weather!

                Love Ellie.
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


                  Hi Terry,

                  Sorry you are feeling so poorly - sending you get well wishes for a speedy recovery ...

                  Your heart of gold brings sunshine to the lives of many of us - on this bumpy road in life's journey (and your sunny sense humour brightens our lives regularly). We are always uplifted by Top Cat's cheerful smiles - as well as cheeky chuckles from Santa Baby (while TC is on vacation in New York with his pal Benny).

                  Take care and get plenty of rest - sleeping well & taking extra cat-naps (whenever you feel sleepy). Keep your strength up with the fruit & snacks you like to get your paws on - and nutritious meals, including Sunday roasts (always made lovingly by your good lady).

                  Remember to keep hydrated with water & other favourite beverages - including the coffee you like (that's always made extra creamy, just for TC). You are are very fondly & highly thought of Terry - by me and many of us in your forum family (and we all sincerely hope you feel much better, very soon, TC).

                  Love and kitten-cuddly hugs,
                  Kayleigh x
                  Last edited by Kayleigh; 14 December 2019, 15:43.


                    Hello Terry,
                    I hope you feel better soon. Sounds like some sort of virus. Get plenty of rest, and like Kayleigh said your favourite beverages.
                    Take care
                    Sheila x


                      Thanks all,

                      Today has been a little better than yesterday, but we'll see how tonight goes.

                      I have thought about a breathing machine but there has not been much change in my breathing for a long time. If I had one last night I would have tried it.

                      I have emailed my specialist and will look into it. I have had trouble with tamazipan, after I took it for a couple of weeks at night, it affected my breathing similarly.

                      Love Terry
                      TB once said that "The forum is still the best source for friendship and information."

                      It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                      Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.


                        Its so unusual to read of you feeling so unwell and like others have said, I. Wishing you a speedy recovery