The last week or so has been very difficult coping with reality. I am living on the edge panic or in full panic about my breathing which has become so weak. I don’t know how I can carry on like this. I just want it to be over. How do people cope? I know there are many in worse circumstances than me…
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Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily. -
So sorry. I take comfort from the palliative care nurse who visits monthly and from my hospital coordinator (consultant nurse) in particular. Both are so reassuring and knowledgeable. Always available to call. I’m not in your situation yet but I sense that it won’t be too long.Diagnosed October 2020 - See my blog at https://www.myneurodiary.com -
I've been anxious and this last week played havoc with my mental health.
Can you contact the respiratory or palliative care team and lay it on thick and ask for help.
I feel for you lots xDiagnosed May 2021 bulbar onset als.Comment
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Rosemary6NT Sorry to hear you are having such a tough time. My husband has had a terrible time with fear/panic and anxiety, completely overwhelming with numerous breakdowns, so heart breaking to see! Our MND care team had a discussion with our GP who was initially reluctant to prescribe on going Lorazepam but it has certainly helped a lot. They have with advice from the MND team also prescribed Mirtazapine. Our GP now rings regularly and does monthly home visits to check in on him. Awful we have to rely on medication but it's a case of needs must here as it was completely overwhelming for him. Lorazepam is great because it appears to be fast acting and you just pop one between your lip and gum when you are having a 'wobble' as I call it. Sending you much love and hugs xxLost my lovely husband on 31.12.22, diagnosed with ALS on 15.12.21.
Alison ♥Comment
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Try taking happy pillsBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xxComment
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I take citalopram in liquid form. Helps a lot with the crying.Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comesComment
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Hakuna I have just started taking a low dose of Citalopram (10mg tablet) for the crying. I was getting so frustrated because I couldn't have a conversation about anything, even slightly emotional, without bawling my eyes out. It has made a big difference, I feel like 'me' again.
It's easy to explain it away because this MND journey IS an emotional rollercoaster, but I was crying at everything.Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.Comment
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Sorry to show my ignorance but what is Ciatopram is it an anti depressant? Must say I get depressed and frustrated at times though I try to stay as positive as possible. A happy pill occasionally would not go amiss.Comment
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Thanks for all your input. I have been taking fluoxetine for ever, maybe a change would help. I’ve been given sublingual lorazepam but can only take max of 2/day so I’ve been eking them out. I took one this morning as was crying like a frightened baby and it did help. Does anyone take lorazepam regularly for anxiety?Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
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Aidan in Shrewsbury Citalopram is an anti depressants. When used to treat depresion the dose is normally higher than 10mg.
In a low dose it is used, with good effect, to manage emotional lability.
Rosemary6NT asking for a medication review would do no harm.Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.Comment
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Rosemary, I cannot think of worse circumstances than "living on the edge panic or in full panic about my breathing" - obvs that makes for a very low quality of life...Originally posted by Rosemary6NT View Post
Apart from reviewing the dose of fluoxetine, or perhaps changing to a different SSRI, I would suggest you get to the bottom of why exactly you're in panic mode about your breathing. Are you getting bouts of air hunger? Gasping for air? Talking about your fears with a Palliative Nurse would hopefully allay your fears about the effects and consequences of weak breathing in practical terms and what can be done to help you.
The cruel kicker is that panic makes breathing worse, then you panic more, breathe shallower and rapidly, panic even more and on it goes.
Lorazepam isn't a long term anti-anxiety medication.
Love Ellie xx
Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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Rosemary6NT I think as others have mentioned a chat to your palliative care nurse/team might help give you some reassurance.
Some people use CBD oil...mindfulness and alternative therapies. Bottom line is it is frightening...facing our worst fears daily. So anything to distract our thoughts is useful IMO.
Big hug🤗💙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
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Thanks everyone. I am getting another visit from my hospice at home next week. I’ve had a UTI which hasn’t helped, that’s clear now. I start with a new care company on Monday who I hope will be an improvement. Maybe too many stressful things piling on top of each other at the moment…Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
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Rosemary6NT
Hope things improve for you, having a UTI can really knock your physical and mental health.
Hugs
DonnaDonna
Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.Comment
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I’m thinking that is something to do with it. Thanks xxOriginally posted by DeeH View PostDiagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
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