Attention PLMD sufferers

[dieselgal]

Since starting CPAP over a year ago I have learned to love my little machine. I fall asleep easier etc etc.
My problem as I have stated many times is that I wake up very frequently throughout the night. I would say a minimum of 10 times. Therefore I still don't feel like I am getting significant rest. I have check the stats on my machine and my numbers are great when I am sleeping.
I have come to believe that it is PLMD that is waking me up. I was diagnosed with that when I had my sleep study but the Dr. never really discussed those symptoms or acted like it was a problem. Initially when I started CPAP the symptoms seem to improve but I think that may be the issue that keeps me waking.
My problem with this theory is that I don't FEEL like I have the urge to move all the time but at night I tend to toss and turn. I turn over probably 10 times a night from one side to another, but I don't have any tingly feeling or feel like my legs were moving when I wake. I am just guessing that maybe what causes this is my PLMD. I have a great bed that doesn't cause lots of pressure (the SLEEP NUMBER BED) I should be able to lay in bed without constantly turning.
I am so tired of feeling like I have to take an Ambien to rest at all. I have tried Melatonin , Trazadone, Exercising, Not exercising and on and on.
Is there help out there????

[sharon1965]

i have restless legs syndrome and PLMD...they present very differently for me

in the evenings and /or any time i'm relaxed or still for long periods (ie, passenger in a car, movie theatre, napping in the afternoon) i experience RLS: a feeling of creepy crawly restlessness and tingling in my legs that makes me insane...obviously, i'm aware of this

while i sleep, completely out of my awareness, i also experience severe PLMD...i twitch and thrash all over, but i also have a rhythmic cycle of movement in my right leg that happens every 17 to 30 seconds, all night long...while discussing my reports from my 3 sleep studies, the dr. said that they felt that about 1/4 of the time these movements caused arousals but again, much like apneas, i'm not aware of these arousals

before my psg the only reason i had any idea that anything was amiss was that over time my entire right leg became what i could only describe as a burning column of pain and i experienced pain similar to sciatica because my leg was getting no rest whatsoever

others will likely weigh in with their PLMD experiences, but i just want to illustrate that plmd and restless leg are two different things (though most people with PLMD also have RLS, but not necessarily the other way around); both are neurological in origin but most people are unaware of their PLMs because they are asleep in spite of them

in terms of the help you're looking for, have you had your ferritin levels checked? ferritin is the protein that promotes iron storage and many people with PLMD have low iron and or low ferritin; you could also try magnesium, which is a muscle relaxer and taking it at bedtime brings relief for some

personally i am on a very low dose of requip and it's helped me immensely...i usually avoid pharmaceuticals wherever possible, but requip has been a lifesaver for me

[kteague]

Ditto to what Sharon said about the differences between RLS and PLMD (I have both).

I recently switched to Requip and I'm up to 2mg nightly, and I still toss and turn all night, waking every few minutes to every hour. Spoke with my sleep doc today and when I mentioned also taking now Tramadol at bedtime, she said it is not good for RLS, so I'm going to see if the Requip is more effective without the Tramadol.

Earlier I got a PM from a forum regular who takes Mirapex, and gets iron infusions, and she mentioned how much better her legs feel after an infusion gets her ferritin level way up. I'm going to be more diligent with taking my iron tabs to get my ferritin level up.

[sharon1965]

dieselgal,
another thought occurs to me
you don't happen to have fibromyalgia do you?
my sleep dr. told me that most FMS patients have RLS and/or PLMD...again, these are all neurological disorders, so it does stand to reason
i ask because of your frequent waking...people with FMS cannot get into stage 4 sleep...they still don't know for sure why this is, just a brain glitch...they only know that when a person with FMS begins to move into stage 4 sleep, their brain basically says, "nope, don't want to go there", and bam! they're awake...many FMS patients have alpha wave intrusion

in my experience, i can have great numbers, take my requip and practice good sleep hygiene...still, i wake up frequently throughout the night, and outside of meds, there doesn't seem to be anything i can do about it because FMS is an unfortunate reality of mine

http://www.sleepreviewmag.com/issues/ar ... -05_05.asp

[pianomagoo]

In my first sleep lab report my PLM analysis was total 219 with index 33.4

My titration lab report: PLM analysis was 57 with index of 11.9

This is mainly my right leg...

The sleep doc said I was having twitches also. I am not aware of this.

I do know I have always felt awake and still do almost all night. I am still extremely tired and still struggle to stay awake. Often I have to set timer for an hour and sleep, which I hate to do as it is a waste of time.

In my first lab report, before the titration, it says at bottom of graph ...Sudden onset of a rapid @ irregular heart rhythm during a hypopnea. This is in uppercase.

Is this serious? I don't know. Why would that happen? Has this happened to anyone else and do you know why?

When you add the plmd arousals and the respiratory and spontaneous arousals...that is a whole lot of awake time. How can they say you were sleeping? I even felt awake.

Anne

[marshaeb]

Hi, Dieselgal.

I was talking about PLMD with someone over the weekend. Here's part of our conversation:

Other times I twitch and jerk awake but I think that is something entirely different. You know how your limbs jerk when you are falling asleep. I don't worry about those.

For the past few years, I'd been having the "crazylegs" sensation that's associated with Restless Leg Syndrome (RLS), but I didn't do anything about it. When it happened, I'd get up and walk around, and the crazylegs went away. No crazylegs, no problem, right? (I like to call that The Scarlett Treatment: Fiddle-dee-dee!! I'll think about it tomorrow!)

When I had my sleep study, I learned that I have sleep apnea AND Periodic Limb Movement Disorder (PLMD), both of which disrupt sleep, even though we're not usually aware of it; and the doctor confirmed RLS, as well. PLMD is a repetitve cramping and jerking of the legs (and, less commonly, arms) that ONLY occurs when a person is asleep. Sounds like what you described. It's like RLS, but it's an entirely different disorder. I've read in a number of places that at least 80% of people with RLS have PLMD, but the reverse is not true.

All of this stuff is tricky, because a number of things can cause the same or similar symptoms in our bodies. For instance, leg cramping may also happen because a person is low on calcium and magnesium, but that isn't the same thing as RLS or PLMD. I've taken calcium and magnesium since my late teens -- had nothing to do with having RLS and PLMD. ....

.... If you do have untreated PLMD, you could get your sleep apnea totally under control but still have your sleep disrupted and continue to have health problems. Of course, getting your sleep apnea under control has to take priority. Ceasing to breathe trumps jerky legs every time. But it is something I think you should get checked, and soon. The Scarlett Treatment doesn't have a high success rate.

The great news is that when my doc told me about the PLMD, he gave me a prescription, which I started that night, and my eveningtime crazylegs feelings stopped within a day or two. So I figured the PLMD was being taken care of, too, and that was proven to be true when I had my titration study a few weeks later. That's huge, because it means that even though it was a number of weeks until I actually started using my CPAP equipment, my sleep disruption wasn't quite as bad because at least PLMD wasn't waking me up.

I'm not in any medical profession, so I don't know why your doc didn't give you an Rx. My sleep doc is a neurologist who specializes in sleep studies, and although he and I have an elemental disagreement about whether or not patients should have an active part in their xPAP therapy , he's still a very good doc. The prescription he gave me was a low dose of Mirapex, which he said in high doses is used to treat Parkinson's Disease. He said although Mirapex works for both things, that absolutely does NOT mean that someone with PLMD has Parkinson's. Might be worth asking your doc about Rx'ing it for you.

Marsha

[sharon1965]

quoted from marshaeb's quote "It's like RLS, but it's an entirely different disorder. I've read in a number of places that at least 80% of people with RLS have PLMD, but the reverse is not true. "

forgive me, but i think it's the opposite, isn't it? that 80% of people with PLMD have RLS also, but not necessarily the other way around...many people have RLS but not PLMD

[marshaeb]

quoted from marshaeb's quote "It's like RLS, but it's an entirely different disorder. I've read in a number of places that at least 80% of people with RLS have PLMD, but the reverse is not true. "

forgive me, but i think it's the opposite, isn't it? that 80% of people with PLMD have RLS also, but not necessarily the other way around...many people have RLS but not PLMD

Well, like I said, I'm no medical type. Maybe these people aren't either. I got the quote from http://www.emedicinehealth.com/periodic ... cle_em.htm
"At least 80% of people with restless legs syndrome have PLMD, but the reverse is not true."


Marsha

[Snoredog]

Since starting CPAP over a year ago I have learned to love my little machine. I fall asleep easier etc etc.
My problem as I have stated many times is that I wake up very frequently throughout the night. I would say a minimum of 10 times. Therefore I still don't feel like I am getting significant rest. I have check the stats on my machine and my numbers are great when I am sleeping.
I have come to believe that it is PLMD that is waking me up. I was diagnosed with that when I had my sleep study but the Dr. never really discussed those symptoms or acted like it was a problem. Initially when I started CPAP the symptoms seem to improve but I think that may be the issue that keeps me waking.
My problem with this theory is that I don't FEEL like I have the urge to move all the time but at night I tend to toss and turn. I turn over probably 10 times a night from one side to another, but I don't have any tingly feeling or feel like my legs were moving when I wake. I am just guessing that maybe what causes this is my PLMD. I have a great bed that doesn't cause lots of pressure (the SLEEP NUMBER BED) I should be able to lay in bed without constantly turning.
I am so tired of feeling like I have to take an Ambien to rest at all. I have tried Melatonin , Trazadone, Exercising, Not exercising and on and on.
Is there help out there????

My guess is you are correct. CPAP only treats the obstructions and the "arousals" associated with that obstruction. There can be "arousals" associated with those limb or leg movements. Those arousals can destroy your quality of sleep or Sleep Architecture.

IF they only address the OSA portion with CPAP that can leave you completely untreated as far as the limb movements go. While these may not cause a drop in oxygen levels they can interrupt your sleep where you may not get any Deep or REM sleep. If you don't get any of that it is like not getting any sleep at all.

All you should have to do is take your last PSG to your doctor, point them out to them and ask them what they intend on doing about them? Even better if you can show where you have been using your machine AHI is under 5 and OSA is effectively being treated. IF you get the deer in the headlights look gather your records and escape for a better qualified professional.

[sharon1965]

quoted from marshaeb's quote "It's like RLS, but it's an entirely different disorder. I've read in a number of places that at least 80% of people with RLS have PLMD, but the reverse is not true. "

forgive me, but i think it's the opposite, isn't it? that 80% of people with PLMD have RLS also, but not necessarily the other way around...many people have RLS but not PLMD

Well, like I said, I'm no medical type. Maybe these people aren't either. I got the quote from http://www.emedicinehealth.com/periodic ... cle_em.htm
"At least 80% of people with restless legs syndrome have PLMD, but the reverse is not true."


Marsha

well whaddya know?
thanks for the link

[dieselgal]

What I am talking about isn't Restless leg. I have suffered with that on occasion and yes I hate the tingly, crawling sensation. My bouts of restless leg started when I took Zoloft for depression. Once I changed meds that has pretty much gone away (not totally but 95%)
When I wake up during the night I am not feeling anything specific that should have woken me up but each time I wake up I feel compelled to turn over and re-situate myself. I really wake up and turn over at least 8-10 times a night. Sometimes more. That's why I am wondering if PLMD could be making me move when I am sleeping and yet me not be aware of what it was that woke me up or why I need to turn over?? I wake up, must turn over and get comfortable but don't have tingling, twitching or odd sensations.
Like I said my numbers on CPAP are really great but during my sleep study I think it showed that in about a 3 hour window I had something like 86 movements. Like I said this has never been addressed by any doctor. I know the next time I see him I will definitely ask but I just hate paying to go back to see them when they are sometimes so useless.

[marshaeb]

What I am talking about isn't Restless leg.

I think you're right -- that it's PLMD, not RLS. This is from http://www.talkaboutsleep.com/sleep-dis ... intro1.htm (boldface/underscore is mine):

Periodic Limb Movement Disorder (PLMD), formerly known as nocturnal myoclonus, is a condition in which a person's legs or arms twitch or move involuntarily and periodically during sleep. PLMD is not the same as night muscle spasms, or hypnic jerks, that occasionally occur when a person is falling asleep. These jerks are normal.

The limb movements typically occur 20 to 30 seconds apart, 5 or more times an hour, on and off throughout the night during periods of non-REM sleep. The rhythmic episodes usually involve a partial flexing of the big toe, ankle, knee, and occasionally, the hips.

The affected individual is usually unaware of the repetitive motion or the accompanying brief awakenings that disrupt sleep. Thus, people who have PLMD usually complain of difficulty in falling asleep, staying asleep, or staying awake during the day. They may also note restless sleep, hot or cold feet, or hair wearing off their legs. Bed partners often report being kicked, fighting for bed covers, or being awakened by the movements.

I was very surprised when my sleep doc told me I had PLMD. (Others were not. They say I've been twitchy for years. ) He said part of what I did was to repetitively extend and flex my right ankle, foot and big toe. Later, I wondered if that explained a mystery I'd been unable to figure out -- every once in a while on my way to work in the a.m., the arch of my right foot would get a charleyhorse-like cramp. Not a great time for my right foot to cramp. It hasn't happened since I've been on the Mirapex, now that I think of it.

I'm with Snoredog... time for an appointment with your doc. It might require (yet another) sleep study, but it would certainly be worth it. It's clear you're not getting restorative sleep. My thought is it would be so worth it to take a low dose of a medication that's known for NOT having a lot of side effects and to finally get some SLEEP.

Marsha

[Zoescorp]

Hello - I just wanted to share my experience with PLMD for anyone else out there who may be going through the same thing. I was taking Zoloft for Panic Disorder for about 2 years with NO panic attacks, which was great. After about 6 months of taking Zoloft and after my doctor increased the dosage from 50mg to 100mg, my husband started telling me that I was "dropping elbows" on his face in my sleep. He did a little study on my sleeping activities when he would get woken up by me "beating him up." So, here's what he observed - I started by raising my arms straight above me and bent at the elbow (think ballerina style). Then, my arms would move rhythmically apart and together. About 6 months after this pattern started, my husband told me that my legs started "pedaling" in my sleep. This was particularly amusing to him since it looked like I was riding a bike. So, my arms AND my legs were moving rhythmically in my sleep. I was not worried about this at first since it didn't seem to be impacting me all that much. Then, I began falling asleep anywhere during the day. Needless to say, this caused a significant problem at work. I started researching and came across reports of Zoloft exacerbating symptoms of PLMD. I immediately weaned myself off of Zoloft and my symptoms of PLMD stopped. No more falling asleep during the day and no more ballet or bike-riding during my sleep! Thank goodness!

[oak]

Zoescorp, I am taking two SSRI's and recently discovered I have PLMD via my sleep study. My question is this: after weaning yourself off Zoloft, did your panic symptoms return? Did you replace with a different med?

[oak]

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