Anyone else dread bedtime?

[futuritycarpaccio]

@Eeyore, ever try a dopamine agonist like pramipexole for the restless leg?

I have this on the way! Ill have it next month

 

[soxfan]

@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.

 

[soxfan]

When I have a chance I will drag out my medical records and see what else the doctors have had me on....I know there are more.

 

[Eeyore]

@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.

 

[nandixon]

@Eeyore, I have to take magnesium (about 200 mg elemental) at night for the leg movement issue. Nothing else works for me.

 

[futuritycarpaccio]

@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.

Is this condition triggered by something?
If its triggerrd by ssri, antihistaminics, dopamine antagonists, then maybe it really is rls. But im sure u checked that already...

Electrolyte imbalance?

Low aldosterone?

Estrogen dominance?

Does it go away when you lie down?Have you checked your back for nerve entrapments?

 

[futuritycarpaccio]

@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.

You sound like me.

At some point i was so convinced i needed a gaba analog, like pregabalin, i asked for it to the doc, he gave it to me. I tried i once and never again, i had such a bad reaction..i could have tried a lower dosage again but honestly i was a bit scared of the sides..

 

[soxfan]

I have been doing some reading on Klonopin....and some say it doesn't let your body get into the good deep stage of sleep and others say it is great for sleep. I am totally confused on if this is causing my problem or not. I take such a small dose it is hard to believe it could cause such tiredness the next day.

So not sure if it is because I have having junk sleep or what. Anyone take Ativan for sleep? I know it is also a benzo but was wondering if it is a better choice....

 

[futuritycarpaccio]

No..there are some benzos which dont affect so much sws, but i dobt remember the names. I know lorazepam is one of them.

I also read those anecdotals but i didnt believe they have restulf sleep. However, i think some people have such mutations in the p450 enzymes, glutathione enzymes, that even a small dose of the medication leads to high concentrations.

Another thing ive been thinking of is if in fact clonazepam could lower cortisol so much that would make me tired.

 

[Eeyore]

@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.

 

[futuritycarpaccio]

@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.

That really does not sound like rls or plmd at all. Youre right.

I have never hear about it though. The only thibg i can think of is if its structural related, some genetic malformation. But if you have no tingling or dormency then i think that rules it out as well.

Aldosterone regulates sodium balance. So i just assume it may cause muscle problems.

I saw lots of men with estrogen dominance, yet doctors say the hormones look fine. But ok, those were people who used finasteride.

 

[Eeyore]

@soxfan - The most commonly used benzo for sleep is actually temazapam (restoril is the trade name I believe). However, benzos don't work so well for sleep if you use them daily. They are good when you need a good night's sleep though - they will knock you out if sufficiently high in dose and you don't use them often.

My doc once offered me Xyrem for sleep which would probably work, but I turned it down. That's just a medical name for GHB (gamma hydroxybutyrate) - which is a date rape drug. It causes you to go unconscious, you lose muscle control, and you lose memory. That was more than I wanted to try, so I didn't even get a prescription for it. I think it may make sense in some patients but it's a little too freaky for me. I don't like the idea of not being able to rouse myself in an emergency.

Benzos to me have no side effects and have only a mild effect on me. They are useful I think but they are generally not strong drugs (although of course they vary between drugs and effects are dose dependent). They were originally invented to be a safer version of the tranquilizers and sedatives of the day, mostly barbiturates and neuroleptics / typical antipsychotics. Benzos, unlike the others, were termed "minor tranquilizers" and used because the side effects are relatively minor. Anything can be dangerous if you take too much, but it's actually very hard to overdose on benzos enough to kill yourself. Knock you out, sure.

 

[Eeyore]

@xptriado - I've never used any drugs that modulate sex hormones. I've never even used oral corticosteroids (1 hydrocortisone pill one time after wisdom tooth extraction). I've never taken any of the drugs for baldness or BPH as I have neither (full head of hair still, thanks mom's dad who died at ~80 with thicker hair than anyone I've ever met). My last PSA was 0.5 and I don't have any problems that seem related to that system.

As I said, it's lifelong - I suspect it has more to do with POTS or a pre-POTS syndrome, although it's my mom with POTS not my dad, and mom doesn't have it. My younger sister doesn't have it either. Just me and dad. I don't know - it doesn't really bother us too much most of the time. The main issue is that it bugs other people or can look weird / rude when you are supposed to sit quietly.

 

[futuritycarpaccio]

Oh, btw, something which gave me a deep restful, continuous sleep, was 2,5g of arginine + 2,5 g of lysine, spread out after 8pm.

It worked well, a few days in a row, then it would stop. but i never unddrstood why it gave me skin crawling, twitches, and even sometimes an accute pain on the left abdomen, as well as depression, the next day.

 

[futuritycarpaccio]

@Eeyore, and did you find something interesting with 23andme? Did you run promethease?

 

[soxfan]

I was offered Xyrem as well from my Lyme doctor but was too afraid to take it....I can't imagine having to wake myself up in the middle of the night to take the second dose. I also did not want to be so out of it I wouldn't be able to function in an emergency.

I also have Lorazepam but my doctor doesn't like me to use it. I am not sure why he would rather give me Klonopin.

I really am not sure what to do....

 

[futuritycarpaccio]

My neurologist said that for sure lorazepam would put me to sleep and wake up refreshed but he doesnt want me to take it because he said "when people go on it, its for life". Im not sure why it would be more addictive than clonazepam.

 

[Misfit Toy]

I tried Xyrem last summer. Holy hell, it was crazy.

@soxfan -I've tried everything you have...none of it works or it works short term.

 

[soxfan]

@Misfit Toy- Wow...you were brave to try Xyrem. Even though my sleep was horrendous a few years back I was just too afraid to try it. I guess because I have had such bad experiences with most of the stuff I had tried..

@ xptriado- I guess that is why my Lyme doctor doesn't want to give me a full prescription for Lorazepam....so does it matter if you are on it for life? At this point I really don't care as long as I sleep....I just REALLY want to wake up feeling refreshed and not trashed....maybe that won't ever happen...