Mirapex

[Chipmunk]

My doctor prescribed this for me to take in 0.125 mg increments, increasing every 4-5 days. I started with 0.125 mg and felt like it really helped me sleep better. The second night it didn't really help, and the third night it made my RLS/EkD exponentially worse. I was up all night pacing around and I had to call in sick to work the next day. I got 2 hours of sleep over 12 hours of trying to sleep.

My doctor moved me to clonazepam but I felt like that just gave me a drugged, unrefreshing sleep.

Would it be worth it to try the Mirapex again? Or maybe another dopamine agnostic? I am just so fearful of a repeat of that third night. It was truly hell.

[ViewsAskew]

tracy, when I read your initial post, it sounded to me as if you had PLMs, not RLS/EKD.

RLS/EKD is characterized by an urge to move while you are awake. It doesn't happen during sleep (mostly - it can happen, but it wakes you up and then you're awake again - you don't stay asleep with it).

PLMs, or periodic limb movements, happen during sleep (mostly - they can happen during wakefulness, but I won't complicate it for the moment).

PLMs prevent you from getting good sleep. 100+ arousals during sleep is most likely PLMs. If the sleep study folks called it RLS, bad on them! Now, you can have RLS/EKD, too, it's just not something they can "see" in a sleep study.

The reason I'm saying all of this? There is some evidence, according to one of my sleep doctors, that people with PLMs with no RLS/EKD or only mild RLS/EKD, have a worse time with dopamine agonists and tend to augment more quickly.

Now, what I can't tell from your post is what happened on that fateful night and I can't tell if you have the RLS/EKD symptoms at all or on a regular basis in addition to the PLMs.

If we sleuth around a bit, we can hopefully figure out some potential options.

[Chipmunk]

Thanks, Ann. I have wondered the same thing myself. I do feel an electric-current-like feeling in my legs all day that gets much worse at night, and the feeling goes away when I move. It is definitely difficult for me to be content sitting still, but mild movements (shifting in my seat, etc.) are fine - I don't have to walk around to be OK unless it's more than an hour or so.

When I tried to find a good resource that would differentiate between the two, I came up short. Honestly I couldn't articulate the difference to you so I have no idea whether I might have PLMs or not.

What I did find on PLMs didn't seem to fit me - although I could have my information wrong. This is what I found:

PLMs tend to be foot flexion and kicks, whereas RLS/EkD movement is more of a slow movement. I don't kick or anything at night, I just move around a lot so my covers are always a mess in the morning.

PLMs tend to be only during sleep, but I have noticed the feeling all day long, and if I am sitting in my bed at night reading or whatever, sometimes if I don't move for a while my leg or arm will jump like it is trying to release built-up tension.

PLMs don't have a difference in sleep latency, whereas RLS/EkD does have a much longer sleep latency. It takes me FOREVER to get to sleep and even at my most tired, it can still take me 15 minutes to get to sleep. I could not fall asleep in 5 minutes if my life depended on it. If I wake up in the middle of the night I am often awake for 2-3 hours trying to get back to sleep.

RLS/EkD runs in families, and my grandma, dad, brother and daughter all have the same symptoms as above. I used to hate to share a bed with my brother on family vacations because he would always have the covers wrapped around himself by the end of the night!

Thanks for any input - I have an appointment in a month with the sleep doctor and I would like to come armed with information.

[sleepdancer]

Just a mention that the appearance of movements with PLMD can be as slight a the big toe repeatedly slowly flexing and releasing, to foot involvement, and all the way up to pronounced limb movements.

[ViewsAskew]

Thanks, Ann. I have wondered the same thing myself. I do feel an electric-current-like feeling in my legs all day that gets much worse at night, and the feeling goes away when I move. It is definitely difficult for me to be content sitting still, but mild movements (shifting in my seat, etc.) are fine - I don't have to walk around to be OK unless it's more than an hour or so.

When I tried to find a good resource that would differentiate between the two, I came up short. Honestly I couldn't articulate the difference to you so I have no idea whether I might have PLMs or not.

What I did find on PLMs didn't seem to fit me - although I could have my information wrong. This is what I found:

PLMs tend to be foot flexion and kicks, whereas RLS/EkD movement is more of a slow movement. I don't kick or anything at night, I just move around a lot so my covers are always a mess in the morning.

PLMs tend to be only during sleep, but I have noticed the feeling all day long, and if I am sitting in my bed at night reading or whatever, sometimes if I don't move for a while my leg or arm will jump like it is trying to release built-up tension.

PLMs don't have a difference in sleep latency, whereas RLS/EkD does have a much longer sleep latency. It takes me FOREVER to get to sleep and even at my most tired, it can still take me 15 minutes to get to sleep. I could not fall asleep in 5 minutes if my life depended on it. If I wake up in the middle of the night I am often awake for 2-3 hours trying to get back to sleep.

RLS/EkD runs in families, and my grandma, dad, brother and daughter all have the same symptoms as above. I used to hate to share a bed with my brother on family vacations because he would always have the covers wrapped around himself by the end of the night!

Thanks for any input - I have an appointment in a month with the sleep doctor and I would like to come armed with information.

You may have PLMW - but RLSzEKD is, to me, just as you describe your daytime movements. It's a nasty feeling that builds and if I don't move, my body will move for me. I don't have a clue if I'm doing it or my brain is, I just know I HAVE to move when it's like that. I've done it so long it's probably just second nature. Technically, there is NO specific movement attached to RLS/EKD. You just move to stop the feeling.

PLMS are not only foot flexions; it can be from the toe, the foot, the knee or the hip joint.

You may have flexions and not be aware. Here's how it works at my house, lol. I am asleep. I have a PLM, my hubby sees it. Immediately, I groan/moan softly and move. I roll to my side, turn over, etc. Each time I have a PLM, I move around. I never have any knowledge of it other than the bedcovers are a mess and I'm awake 30 times.

RLS does NOT happen while you are asleep. If it occurs while sleeping, you will come to consciousness relatively quickly and the nasty feeling will be there. PLMs have no feeling attached to them.

Does that help?

[Chipmunk]

Sounds like I have both. Yay.

Are there different treatments for PLMs than for RLS? I have noticed an improvement in my symptoms while awake since starting the iron regimen, but I am still waking myself up at night quite a bit.

I swear I have aged about 10 years in the past 3 years of horrible sleep. I am telling everyone that I am quitting my job at the end of this school year (I'm a teacher) so I can stay home with my 4 year old her last year before kindergarten but it's really because I just don't have the energy to teach every day on this little sleep (I wouldn't have the energy to play with her all day long, either - the only reason this will help is that she will be in 4 year old kindergarten half days).

That reminds me - one reason the sleep doctor diagnosed RLS was that the sleep disturbances mostly went away after about 7 in the morning (she let me sleep until 10 a.m.) and RLS tends to follow the circadian rhythms. Do PLMs follow the same pattern?

[ViewsAskew]

I don't think PLMs follow a circadian pattern, but I do not know. Interesting question.

PLMs are not related only to RLS. 80% of people with RLS have PLMs, but only 20% of people with PLMs have RLS. So, they are really not well understood.

PLMs are not treated UNLESS your sleep is very disturbed. Some people have many of them, but they stay asleep. Like you, I awaken from them constantly.

Treatment for PLMs is difficult. They really don't know what works best. They do know that the dopamine agonists help, BUT, for people with mild RLS and severe PLMs, the dopamine agonists can quickly worsen the RLS. Catch-22. My RLS went from once or twice a month to 24-7 while taking a dopamine agonist. Just my experience, of course, and this severe reaction is uncommon...but it can happen.

I find that the PLMs are treated relatively well by the opioids I know take. I couldn't handle the drugs like clonazepam, etc.

Not sure I've helped any...

[cornelia]

I found this abstract on PLM's and circadian rythm:

Periodic limb movements in sleep exhibit a circadian rhythm that is maximal in the late evening/early night.
Duffy JF, Lowe AS, Silva EJ, Winkelman JW.

Division of Sleep Medicine, Department of Medicine, Brigham and Women's Hospital, Harvard Medical School, Boston, MA 02115, USA. jduffy@hms.harvard.edu

Abstract
OBJECTIVE: Periodic limb movements in sleep (PLMS) show a time-of-night pattern, with most movements at the beginning of the night. Our study aimed to determine whether this pattern is due to an endogenous circadian rhythm, like that in the related movement disorder Restless Legs Syndrome (RLS).

METHODS: Four healthy older adults with a screening PLMI>20 were studied in an inpatient forced desynchrony protocol with an imposed sleep-wake cycle of 20 h for 12 "nights," allowing separation of circadian and sleep homeostatic influences on leg movements. We recorded sleep polysomnographically throughout each scheduled episode, including left and right anterior tibialis EMG.

RESULTS: PLMS in Stage 2 showed both a significant time-within-sleep pattern and a significant circadian rhythm. The circadian rhythm in PLMS peaked at the circadian phases when usual sleep onset occurs, preceding the evening rise in melatonin secretion.

CONCLUSIONS: In our subjects, the circadian pattern of PLMs expression was very similar to that previously reported in patients with RLS. This evidence for a circadian rhythm in PLMS has implications for treatment and provides direction for future studies of the pathophysiology of this movement disorder.

Copyright © 2010 Elsevier B.V. All rights reserved.

Corrie

[Chipmunk]

Ann, no that helps a lot. My reaction to the various drugs seems to mirror yours, so the fact that you find relief with opiods encourages me.

Corrie, wow you are a superstar! I am going to print out that study and bring it to my next appointment. Very interesting!

[ViewsAskew]

Tracy, I'd be lying if I said I was miraculously cured! But, a few years ago I couldn't work or function, and now I can, albeit at a reduced rate of prior to the worsened RLS and PLMs. It was a constant decline over a 15 year period, until I was unable to do anything.

The opioids have their drawbacks...no question. And, I've found that they aren't a good match for me taking them for months at a time.

I can tolerate a tiny amount of Mirapex - I cut a .125 tablet in half - and use that 4 days in a row, prior to augmentation issues, then take methadone for 3 days in a row. It's just the current method that's working relatively well, no doubt to change in the future.

For what it's worth, people with low ferritin have a tendency to augment much more quickly than those with higher levels. I can't remember if you said yours were tested or not or high or low....if they are low, taking a DA is probably not a good idea. Mine is up to about 40 (a low of 8, IIRC), and I have a hard time keeping it up, but when I keep it over 30 I have fewer issues with augmentation.

[Chipmunk]

Yes, I tested low, I think 16? I am currently taking Niferex (Rx Iron and Vit C) and the last test indicated an increase in my iron stores.

[ViewsAskew]

I would definitely NOT use a dopamine agonist until you got the iron up to at least 40 or 50. 100 would be even better. It doesn't happen to everyone, but one of the researchers I talked said it makes a big difference to many (having the iron high vs low when using a DA).