futuritycarpaccio
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I have this on the way! Ill have it next month@Eeyore, ever try a dopamine agonist like pramipexole for the restless leg?
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I have this on the way! Ill have it next month@Eeyore, ever try a dopamine agonist like pramipexole for the restless leg?
@Sidereal - dad has the same leg movement syndrome as I did and had a horrible reaction to mirapex.
I don't think it's really restless legs. It's something else, but I'm not sure what. RLS usually is bad in bed at night (mine goes away) and normal during the day (mine is worse). First line treatment now for RLS is either iron if one has low ferritin (now a known cause of RLS) or otherwise lyrica or neurontin, both of which seem to work better and cause less of a tolerance issue than the D2 agonists (mirapex / requip).
I never had much luck with sleep meds. I did have luck with modafinil during the day, which makes me nap less, and hence I can sleep better. I do use some sleep meds but I always find it's like trying to kill a whale with a straw and spitballs.
Traz should be better for slow wave sleep / sleep architecture if you can tolerate it. Generally you should take it a few hours before you want to go to sleep, and it does have some hangover the next day.
You sound like me.@xptriado...I have tried Ambien...Lunesta...Rozeram...Gabatril...Trazadone...Remeron...I am drawing a blank on more but lots of herbal too...Kavinace...Melatonin...Seraphos...so many I would have to look in my notes.
I think I read Klonopin does not allow the deep stages of sleep so I probably am not getting it so I wake up feeling trashed.
I have also tried Neurontin because I have nerve pain but I wake up really hungover the next day. It might be worth another try though at a lower dose.
That really does not sound like rls or plmd at all. Youre right.@nandixon - I do take magnesium - maybe it helps that, not sure. It's a natural NMDA blocker and Ca++ channel blocker (NMDA and AMPA channels are sort of calcium channels anyways - although they prefer monovalent cations - and magnesium influx is what eventually causes the channel to close).
@xptriado - It's lifelong, so it's not purely ME-based for me, and dad has it (who does not have ME). Mine is worse though. One doc said it's like akathisia, but that is drug induced, and I haven't taken any of the drugs that cause it (usually antipsychotics, sometimes SSRI's) - and that is new in onset, not lifelong. No one really knows what it is. Yet another mystery.
It may be postural - lying down flat in bed seems to make it better. When I sit in a normal chair with feet on the floor, I will rapidly move my knees up and down (enough to shake the floor - it can be annoying for others). I've always had trouble with my lower limbs staying still for long periods. It could be circulatory? Whatever it is I've always had it and it's probably genetic, but doesn't it RLS and doesn't seem to be progressive (was just as bad when I was a kid). Also, I don't get the uncomfortable crawly sensations people with RLS describe - it's more like my feet and legs just move on their own. I can control it - like breathing - but if I am not consciously suppressing it, it happens again. So it's not really involuntary (like a tremor or myoclonic jerk) but it's not totally voluntary either. If I force them to be still, it's not uncomfortable, but very rapidly it starts right up again.
I doubt it's estrogen dominance as I'm a dude. Never checked estrogen, but testosterone levels are normal and endo says all sex hormones are fine.
Antihistamines seem to have no effect. Modafinil does not worsen it - not sure if it helps, not much though. My low aldosterone (undetectable) is treated with florinef, so that shouldn't be an issue - and not sure why that would cause it.
It is better when I lie down, which is why I think I may have had pre-POTS as a kid and the motion may be a sort of attempt to compensate for poor circulation with the skeletal muscle pump. But that is speculation.