Announcement

Collapse
No announcement yet.

Pseudobulbar affect

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Pseudobulbar affect

    Really asking for help. The last week I am just not myself. I've had debilitating crying episodes. I know re emotional liability. I just can't concentrate on anything. I have all the important things still to do re getting things in order but I just can't bring myself to do them. I'm not sleeping well. I drop off easily but always wake at 3am. I am also not eating. I never feel relaxed or happy.

    I've got lorazepam for the anxiety but is there anything I can do? I see lots of you coping and I envy it.
    Last edited by shelly21; 11 August 2022, 18:59.
    Diagnosed May 2021 bulbar onset als.

    #2
    Shelly honey, I think you're describing depression more than PBA/EL 🤔 I hope I haven't offended you...

    You might need a more suitable medication. Maybe talk to your GP?

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

    Comment


      #3
      Thank you Ellie. I will try get appointment with gp. I feel just not myself x
      Diagnosed May 2021 bulbar onset als.

      Comment


        #4
        shelly21 I felt similar about a month ago and it lasted around 3 weeks. Total despair and such deep depression. Couldn't find any enjoyment from anything. No end in sight of feeling like that and just not wanting to engage with anyone or anything. It came to a head when I saw a cpn and just basically sobbed and off loaded about the diagnosis and loss of any hope etc. Really helped and I felt such a weight off shoulders. Dont get me wrong I ain't exactly skipping down the road now... but my mood is better and can think of something else other than despair and so am managing again. Can u ask at local gp surgery if they have anyone u can talk to? I am on anti depressants before mnd and not sure making much difference now. Although hate to think what might be like without them! I think Shelly how u r feeling is totally normal given the circumstances. And online its easy to pretend u r managing when actually you're not so don't think u r the only one! Thinking of u. Xx
        Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

        Comment


          #5
          Thank you for sharing your experience Zante xx
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            #6
            shelly21 I feel dreadful now about suggesting talking to someone professional when u have speech problems. Am really sorry I didn't think when wrote my reply. Sorry for really not thinking straight. Am tired and hot! Xx
            Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

            Comment


              #7
              Ellie it was a dark period and am sure all of us have experienced the same. But u can and do have moments when something other than mnd can occupy thoughts and something can still bring a smile. Mine today was watching my lab attempt to catch a butterfly! So goofy made me laugh. Xx
              Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

              Comment


                #8
                You can't underestimate the emotional impact receiving the diagnosis makes.

                You summed it up, loss of hope, despair, loss it is perfectly natural for you and your support network to feel down.

                We felt like we had fallen into a deep dark hole and it took some time to feel anything like normal ( if we ever have got back to that). Hubby went on anti depressants which take about 4 - 6 weeks to kick in.

                We lost normal at diagnosis. It does get a bit better. But its never far away.

                Go easy on yourself. xxx
                Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

                Sense of humour intact throughout.

                Sadly passed away peacefully 2/9/22

                Comment


                  #9
                  shelly21 I don't think I can offer much advice other than to agree that it is totally natural to feel the way you do having had such a diagnosis and hopefully an appointment with your GP to look at options would help.

                  When my dad was diagnosed he really struggled. He was already on anxiety meds and I dread to think how he would coped without that help.

                  Social media and such windows into other people's lives can sadly be misleading so please don't feel that you should be coping better, you're doing your best. Also whilst feeling the way you do you are still here supporting others which shows what a lovely person you are. Keep taking it one day at a time and hope you feel a bit better soon x

                  Comment


                    #10
                    shelly21 most of us who look like we are coping are either masking or not sticking our heads up on the really bad days. I spent most of last week losing my mind over catheter issues. I had more crying episodes than I can count. I’m sure we’ve all been there at some point.

                    See what your GP says about anti depressants. They can help.
                    Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.

                    Comment


                      #11
                      Zante thank you for sharing your experience with me. Please don't apologise re talking therapy. I am now using an app on my phone.

                      I will type exactly how I'm feeling so that my partner can read it out to the g.p.

                      Thank you everyone for taking the time to reply.

                      I did take half lorazapam a few times yesterday which seemed to calm me but I will seek g.p advise x
                      Diagnosed May 2021 bulbar onset als.

                      Comment


                        #12
                        I think that's a really good idea regarding communicating with gp and be honest and open about everything. Our gp surgery has a cpn who u can make an appointment with directly once u have been referred by your gp and have sessions on a when u need it basis. Really helped. What sunk me last time recently was reading a post about difficulties with something and I had a total panic about the future and how things were going to progress to and it really messed me up. No idea why that day. We all manage and cope as much as possible and are here for one another. We can't take it away but can listen and empathise and be here. Take care xx
                        Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

                        Comment


                          #13
                          Zante I'm going through a similar thing. My partner has never been amthe organised kind. He admits he forgets things. He does a great job but I am concerned how he will cope in the future re my care.

                          Also I'm in my wheelchair full time and I now can't access friends & families homes. I loved get togethers. I also can't join in speaking and well I am a gobbie type lol.

                          Chest infections etc just all in all negative stuff.

                          But I will try x
                          Diagnosed May 2021 bulbar onset als.

                          Comment


                            #14
                            shelly21 you are going through a lot and it's absolutely no shock to read you're struggling to cope. It's like stages of grieving without the loss of someone. We are still the same people, our bodies fail and change and simple tasks we took for granted are taken away . It is a very upsetting time and I think worrying about the future is inevitable and understandable so try and be kind to yourself and know you are not alone and help is out there if u reach out xx
                            Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

                            Comment


                              #15
                              shelly21 I hope you feel better soon but you have not been physically well recently with your chest infection, I bet that took a lot out of you. This could be the aftermath of it. On top of MND.😞😞sending hugs xx

                              Comment

                              Working...
                              X