…wire me up as a generator
Seriously now - does anyone else come over sleepy before jerking? I’ve had an EEG so it’s not an epileptic thing. I very often feel a tension in my muscles beforehand but sometimes I feel a desperate need to sleep and then once I’ve jerked I’m pretty ok again. Anyone else?
hi D I to get twitchy/jerky esp in the evening or when I’m exceptionally tired I thought it was just me lol I can sort if feel them almost building up b4 they start mine are mostly thro my lower back n legs its a very odd sensation that wares u out "/ I’m not dx hence thinking it was me being me lol hope u find some way of easing them if u do please do share Lou x
Deb - have you told your neuro about the jerks following sleepiness? This sounds like it might almost be a real myoclonic jerk which means that it is an important clue - something may be going on with the parts of the nervous system involved in sleep? And/or maybe narcolepsy?
Lou - I used to get the building up sensation, followed by an electric shock somewhere, followed by a jerk/jerks. Almost like my body was doing its own defibrillator sequence - all that was missing was someone shouting “Clear”!
Mine are now well controlled with a combination of baclofen and pregabalin.
Hi Karen - no, I don’t think I’ve mentioned the sleepy bit. I did say I often have the building up sensation in my muscles. The 2nd opinion neurologist has ordered an EMG and MRI of brain and cervical spine. The jerks are not happening so much anymore, maybe only 6 a day rather than 50ish as it was 11 months ago. That must be good? All weird anyway. She said she’s checking for propriospinal myoclonus but I don’t think that would solely explain my other symptoms - do you know more? I’ve no idea about what parts of the neurological system affects sleep - Dr. google doesn’t seem helpful either on this specific area.
Any info gratefully received xxx
From memory, sleep is a pretty complicated thing involving multiple parts of the brain including the pineal gland and the pons (and other bits that I can’t remember). The pons is responsible for telling various part of the nervous system to switch off so we don’t physically act out our dreams so I think myoclonic jerks might have something to do with the pons or the bits the pons tells to switch off, but I’m sure it’s not that straightforward.
There are lots of things that can interfere with it too - anything from low melatonin levels to sleep disorders such as sleep apneoa and damage caused by things like MS.
All rather out of my areas of expertise though, sorry!
It certainly wouldn’t hurt to tell the neuro about the sleepiness bit though.
Hello may I throw my hat into the ring
it could well be a myclonic jerk or a hypnic jerk, the latter normally happens if you are stressed or uncomfortable in bed the muscles will contract and then jerk, I have had both, nothing to worry about however must be reported to GP and especially your Neurologist
hope this helps