I had the most horrendous sleepless night. If i was a dog I’d be put down. Pity i can’t be. Pain in my back, hips, legs, constant shaking and jerking and cramp. Gaberpentin and pramipexole have been increased but its all back. Even during the day. Half an hours sleep and off it goes again. Thoroughly fed up. Rant over.
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Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes -
Hakuna Rant away, that sounds horrific 😟
Tell your Neurologist and GP, perhaps a few nights on an opioid or a benzodiazepeine is worth trying, subect to no contraindications, and maybe a mattress/positioning in bed review by the OT? xxDiagnosed 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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I have no advice, just gentle hugs. Knowing that I have options when things get bad is what keeps me somewhat sane.
Meanwhile, take Ellie’s advice and see what your GP or neurologist can do to help.Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.Comment
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That sounds awful. I hope you can get some advise from doctors etc and quickly. I take benzodiazepine (lorazepam) for anxiety. Not continously but when I'm anxious or upset etc. It really helps me get a good nights sleep xDiagnosed May 2021 bulbar onset als.Comment
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Better today. Husband spoke to hospice who said the extra Gaberpentin I’ve been prescribed should help and paracetamol in the night. Still got back pain- sciatica but hey hoBulbar 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’ve put a bean bag heating pad, plugged in and ready, next to my bed. It has an automatic shut off, and it’s a lifesaver for night time cramping. Doesn’t help with the shaking or jerks but provides lots of relief.
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House44 I’m in Canada. I can access MAID ( medical assistance in dying). Knowing I have some control in this madness helps me cope.Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.Comment
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shocking we have nothing like this in UKComment
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House44 It has been available since 2016 here. I remember discussions about right-to-die happening back in 1994 spearheaded by a woman who had ALS. It’s taken a long time to get here, and I’m grateful that the option is available to those who want it.Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.Comment
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