In the past hour my husband has had severe muscles spasms firstly in his right arm, then followed by his left arm. I tried gentle stretching as demonstrated by physio, massage with aromatherapy cream prescribed by hospice, and wheat bag. Nothing helped, and he was in severe pain. Of course these things always happen outside office hours, when you can’t reach your health professionals! It happened quite soon after he’d had his medication - paracetamol, gabapentin and baclofen. So I tried a small dose of oramorph. It’s eased off now, and I will contact the palliative care team tomorrow. But I wondered whether any of you have had a sudden severe episode like this and how to help if it happens again.
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Gosh, that must have been frightening for you both Polly - I'll bet you're glad it didn't start in his left arm or you'd have thought he was having a heart attack.
Presumably he has had that 3 med combo before and he isn't dehydrated - was he doing anything immediately before the spasms came on? A stretch, change of position, coughing fit, breathing episode etc ?
Occasionally I get a sudden muscle spasm but it's because I've moved, yawned or am cold.
I'm glad the oramorph worked.
Love Ellie.
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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Originally posted by matthew55 View PostDidn't you say my new one was anti spasm?
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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Hi Polly, I used to get what I described as electric shocks in my arms.These episodes lasted only a minute or so but would return time and time again.I noticed it was when I used my hands to hold things .A year later my right hand is weak and withered looking with a poor grip.The left hand is not as affected but getting those” electric shock feelings” in left hand and cramps in fingers if I try and lift or grip once.
Hope the palliative team can help your husband ASAP.
Best wishes
Mary
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Polly sounds a very frightening experience. My community hospice team are available 24/7 to support. I wonder if it's worth checking when they are available just in case for future? Helps to have health professionals to at least talk to.
Take care 🤗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.
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Thanks to everyone who replied. We had a really bad day yesterday, so i didn’t thank you all. Needless to say I couldn’t speak to anyone from the palliative care team, but in the late afternoon, a nurse rang. Not spoken to her before but she was really nice. She gave advice about giving additional oromorph and is asking the palliative care consultant to ring re medicine review.
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Originally posted by Polly View PostWe had a really bad day yesterday,
Hopefully his meds assessment will yield results by, perhaps, increasing and/or introducing a different antispasmodic med to lessen his high muscle tone.
Wishing you both a few good days. xx
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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Hi Polly I use baclofen x 3 a day at 10ml. It solves my spasms. I'm also on butec patch. Its a 7 day patch so easier re rendering etc. Its helping with my breakthrough pain such as buttock and hip pain re wasting muscles. Its a morphine type patch and they have said as I progress I can take oramorph also.
I really would be lost without baclofen.Last edited by shelly21; 30 October 2021, 23:43.Diagnosed May 2021 bulbar onset als.
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Shelly, my husband’s dose is much lower - 3 ml twice a day and 5 at night. I mentioned increasing it to the OT who is our point of contact for the palliative care team and she said they don’t like giving too much as it will affect his breathing. Hopefully the consultant will increase it, or change to something different.
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Originally posted by Polly View Postmy husband’s dose is much lower - 3 ml twice a day and 5 at night. I mentioned increasing it to the OT who is our point of contact for the palliative care team and she said they don’t like giving too much as it will affect his breathing. Hopefully the consultant will increase it, or change to something different.
I take 20ml/20mg of Baclofen at night, 10ml/10mg 2x day, and I am in severe respiratory failure. I could not function without taking Baclofen.
There is always a trade off in taking any medicine, often to do with quality of life and any decision is for your husband to make, once he has been informed of any risks and contraindications.
Love Ellie.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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