Announcement

Collapse
No announcement yet.

How to live with fear and panic?

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

    #16
    Rosemary6NT Sheesh, that is a lot going on for sure.

    I've everything crossed for Monday, having good carers is vital. 😘😘
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    ​

    Comment


      #17
      Originally posted by Ellie View Post
      Rosemary6NT Sheesh, that is a lot going on for sure.

      I've everything crossed for Monday, having good carers is vital. 😘😘
      Thanks Ellie
      Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

      Comment


        #18
        Sounds very distressing Rosemary. I think with a lot of stress around, it doesn’t take much to trigger anxiety and panic, which then further affects breathing. Certainly I found when worrying about not being able to use my ventilator for the cataract operation, worrying made my breathing worse, and just surrendering to the situation and trusting my body to cope helped a bit. Do hope the next carers are an improvement xx
        Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

        Comment


          #19
          Have you been offered morphine for your breathlessness ? It is very good for that, apart from the constipation issue. I have Ordine 2% and I take 1-2mls if I feel breathless. Even just knowing it's there for me, helps me keep calm. I've only had to use it three times in the month I've had it. Hope you get some relief from anxiety, it's awful for sure !

          Comment


            #20
            Rosemary6NT breathlessness is a terrible feeling. I note in other posts that Ellie & @shelley21 both mention using a nebulizer ...I'm certainly adding this to my list of queries for next respiratory appointment πŸ€”πŸ˜˜
            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.​​​​​​

            Comment


              #21
              Originally posted by LindaB View Post
              Rosemary6NT breathlessness is a terrible feeling. I note in other posts that Ellie & @shelley21 both mention using a nebulizer ...I'm certainly adding this to my list of queries for next respiratory appointment πŸ€”πŸ˜˜
              I got a rare visit from my GP the other day and she mentioned a nebuliser but said the were more prone to causing an infection. I guess if the situation changes she may revise that.
              I may talk about it at my next sleep and ventilation appt at Oxford later this month
              Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

              Comment


                #22
                Originally posted by aussiegirl View Post
                Have you been offered morphine for your breathlessness ? It is very good for that, apart from the constipation issue. I have Ordine 2% and I take 1-2mls if I feel breathless. Even just knowing it's there for me, helps me keep calm. I've only had to use it three times in the month I've had it. Hope you get some relief from anxiety, it's awful for sure !
                I use morphine sulphate 2mg/ml 1ml every 4 hours I'm awake now. When extra panicked I use sublingual lorazepam. Unfortunately that's becoming more frequent
                Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                Comment


                  #23
                  My wife takes clonazepam for panic attacks. Seems to cut down the severity quite a bit. It's her happy pill.

                  Comment


                    #24
                    Originally posted by Rosemary6NT View Post
                    I got a rare visit from my GP the other day and she mentioned a nebuliser but said the were more prone to causing an infection.
                    Rosemary, I'd definitely bring up the nebuliser topic at your next respiratory or Neuro visit and listen to what they have to say, rather than the GP. xx

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

                    ​

                    Comment


                      #25
                      Originally posted by Ellie View Post
                      Rosemary, I'd definitely bring up the nebuliser topic at your next respiratory or Neuro visit and listen to what they have to say, rather than the GP. xx
                      Thanks Ellie, I will
                      Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                      Comment


                        #26
                        Rosemary6NT I've discovered this week we have a Community respiratory team...so I'm hoping no more arduous trips to hospitalπŸ˜‰

                        ​​​​​​(I've been referred by Neuro rehab teamπŸ‘πŸ») 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.​​​​​​

                        Comment


                          #27
                          I wish I had a local team. I've got to make the 3hr round trip for my respiratory team and add on time there makes it a tiring day. I've been told lots of the nurses are on long term sick. I will be asking what can be done re a better way etc.

                          X
                          Diagnosed May 2021 bulbar onset als.

                          Comment


                            #28
                            shelly21 yes I too am bracing myself for breathing tests at the hospital then respiratory physio appointment. They haven’t mentioned possibility of home visit, would certainly be so much easier! X
                            Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                            Comment


                              #29
                              My view is (given our diagnosis) that home visits should be offered if at all possible. It was after discussing with my palliative nurse that things have moved forward.

                              Worth checking what's available in the community...no reason community team & hospital team can't share information in my opinion.


                              shelly21 Heather R
                              ​​​​

                              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.​​​​​​

                              Comment


                                #30
                                I was a long term taker of anti-depressants long before my diagnosis. I had changed from escitalapram to sertraline maybe 5 years before, and have been sane, even-mooded, ever since. I feel no anxiety, worry, or any other negative emotion. This is fabulous, and even my husband wonders how I stay so cheerful. I, on the hand, just feel grateful. Its wonderful to feel so good; it is also part of the reason I have kept away from this forum for a significant time. I came back to create a new post, but I always look at both new topics and today's posts when I do come back. Must look at how long it has been.
                                Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

                                Comment

                                Working...
                                X