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    Anti depressant

    Hi all. I've hit rock bottom. Its a big mixture of things like no decent mattress sorted by nhs. Also my ability to walk is poor and I know its time to get the wheelchair out. My right arm is only 10% usable.

    The palliative doctor who i really like has put me on Mirtazapine 15mg to help me sleep and help with nerve pain in my shoulder & buttock.

    I just feel like I've lost the fight in me. Soeech getting poor. I can't be bothered getting dressed etc.

    Those of you using wheelchairs did you feel better once you began to use your wheelchair?

    X
    Diagnosed May 2021 bulbar onset als.

    #2
    Feel for you. I'm using anti depression tablets which I call happy pills. πŸ˜ŠπŸ˜πŸ€™πŸ˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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      #3
      What have you found useful @matthew?

      When your speech first went how did you get overcome the first few weeks etc.
      Diagnosed May 2021 bulbar onset als.

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        #4
        They stop my coughing and problems with my breathing. Couldn't do without them now. πŸ˜πŸ˜ŠπŸ€™πŸ˜xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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          #5
          I think you're in a particularly difficult stage atm Shelly, that stage of active loss is guaranteed to pull everyone down, so don't be too hard on yourself, plus... you've had failure after failure from healthcare professionals whose remit should be to improve your day to day life 😟

          Originally posted by shelly21 View Post
          The palliative doctor who i really like has put me on Mirtazapine 15mg to help me sleep and help with nerve pain in my shoulder & buttock.
          Hopefully the Mirtazapine will kick in and make a tangible improvement to your mood and pain 🀞🀞
          I presume the doctor knows you're using a Butrans patch (unless you stopped) as there is a 'use with caution' in conjunction with Buprenorphine.


          Originally posted by shelly21 View Post
          Those of you using wheelchairs did you feel better once you began to use your wheelchair?
          For me, using a wheelchair stopped me tottering around the placing, often clinging to walls or furniture as a safety prop, and gave me much more freedom in an instant, so yes, it made me much better.

          I am an it is what it is person by nature and I try to make the best out of any situation. 😘😘
          ​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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            #6
            Sending a big hug Shelly. I hope things improve for you soon. xx
            Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

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              #7
              Originally posted by shelly21 View Post
              Those of you using wheelchairs did you feel better once you began to use your wheelchair?

              X
              Hi Shelly,

              stick with it, we all have our ups and downs with this horrible disease 😞

              it was tough using my wheelchair at first but you soon get used to it and it gives you a whole new lease of life, I’m now in a power chair which gives me more independence πŸ‘

              James x
              Foxes Never Quit πŸ’™

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                #8
                Ellie yes stopped butrans. Tried it for 12 wks and didn't help with nerve pain. It also reacted with my skin.

                It is a hard phase you're so right. I know the meds will take time. Thank you x
                ​​
                Lcfcno1fan thank you for your encouraging words. I actually went out in it around shops today and I know you're right about the downs lol. X
                Diagnosed May 2021 bulbar onset als.

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                  #9
                  shelly21 I can empathise. I did feel much better getting a power chair, it was getting very scary tottering around dangerously. We have hard floors everywhere. At least I could move around independently.


                  ​​​
                  Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                    #10
                    matthew55 what helped with your cough and breathing? They trouble me a lot
                    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                      #11
                      Venlafaxine is what I'm on currently.
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                        #12
                        i found my powerchair allowed me to do many of the things i had been missing. i have been many, many miles in it. make the most of it
                        Best

                        Robin

                        Diagnosed 05/2017 Familial ALS Limb onset

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                          #13
                          Thank you Robin. We have charged it up ready for a few hours out 2moro.x
                          Diagnosed May 2021 bulbar onset als.

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                            #14
                            Originally posted by Rosemary6NT View Post
                            ... what helped with your cough and breathing? They trouble me a lot
                            Rosemary, if you haven't mentioned this to your nurse or Neurologist, do.

                            If you're not on meds to reduce saliva production, then saliva might be causing the cough, or some people find that taking a low dose of morphine 1-2ml) not only suppresses the cough reflex, but relaxes their breating too.

                            Other people swear by CBD oil.

                            And obvs Matthew finds his meds work for him but, as with all meds, do look at the side effects before deciding to try any then you can weigh up the pros and cons of each.

                            It's a Quality of Life thing πŸ‘πŸ‘πŸ˜˜
                            ​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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                              #15
                              Originally posted by shelly21 View Post
                              We have charged it up ready for a few hours out 2moro.
                              shelly21 Enjoy 🦼 πŸ’¨ 🏁 🧑
                              ​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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