Chronic Insomnia & MS
Last updated: October 2023
Hi, my name is Sara and I am 56 years old. I have Secondary Progressive Multiple Sclerosis, diagnosed in 2004. I have chronic insomnia and together with the fatigue from my MS sometimes I just feel like just giving up. I also suffer with anxiety and depression.
My history with insomnia
I have had trouble sleeping going back to my teens, I am not sure if there was an element of anxiety keeping me awake, O'levels and then starting work probably didn't help. My dad suffered with insomnia, he was quite often sat in the kitchen having a drink at random times in the middle of the night. Is it hereditary maybe?
Treating my insomnia
Since my MS diagnosis back in 2004, the insomnia gradually got worse as the disease progressed until I was diagnosed with chronic insomnia. I've been on various sleeping tablets and tried various techniques to no avail. Finally, thanks to my consultant and my GP, and after making sure I could tolerate the dose, I was put on 3 x 500mcg clonazepam, 50g phenergan, 2g melatonin and 7.5g zopiclone (taking an additional 3.75g if/when i don't get off to sleep after one hour). It's quite a heavy dosage and it was a gradual process, but I'd say 8/10 nights within one hour of taking this concoction I would be asleep. I sleep from anywhere between 2 and 5 hours and sometimes manage to go back to sleep for an hour or two depending on how much sleep I've managed to have.
Insomnia and MS medication
The medication doesn't make me feel groggy the next day even together with all my other medication but when I have a bad night with say only 2 or maybe 3 hours sleep and especially if I have a run of nights like this, I definitely know about it, I'm like the walking dead and all of my MS symptoms are made much worse to the extent I'm rendered useless.
I'm lucky to have a partner who is also my carer to take care of the cooking and help me to move around when my legs go on strike. I also have the occasional night when I just don't sleep at all these nights tend to correspond to whether I'm anxious about the next day or up and coming events or when I'm having a stressful time.
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