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Posted: Mon Mar 03, 2014 3:17 am
I know this can't work for people who don't have a CPAP, but it helps my WED even though the pressure is not high enough (yet) to help with the apnea. After kicking my legs for a while to get the WED calmed down a bit, I'll put the CPAP on and it helps me focus on my breath vs. the WED. And at some point, I get to sleep. It only makes a difference in a couple of hours, but that's better than nothing.
Posted: Wed Mar 05, 2014 5:14 am
There are similar techniques that can be used without a CPAP. One is to lie on your right side, focus on your breathing, and breathe in and out, 8 times, with the exhale and inhale the same length (eg. count in your head one-one-one-one as you inhale, one-one-one-one as you exhale, then two-two-two-two as you inhale, etc.);
turn onto your left side and repeat, except count up to 16;
turn onto your back and repeat, counting up to 32. You can fall asleep at any point, but it will usually be when you're on your back.
The goal is the same as you discovered with the CPAP - to focus on the breath to the exclusion of all else.
Posted: Wed Apr 02, 2014 6:46 pm
Doc just took me off the CPAP said it wasn't really doing anything. The breath thing is sorta like meditation which can be helpful provided you can move with the WED.
Posted: Wed Apr 02, 2014 10:22 pm
I have used the meditation/self hypnosis trick to allow me to get to sleep when I have one my migraine headaches for years. However, I found that when my WED kicked into high gear that the hyper-aroused state prevented me from being able to concentrate long enough to get into the groove. Just as I would get close, my mind would race on off something else and I was back to square one. The only way that I could focus was to get up and onto my computer to play a game or work a Soduku puzzle for 15 to 20 minutes to slow my mind down. Only then could I go back to bed and try again.
As for CPAP, I understand the comments about concentrating on your breathing. But I try to keep from doing that because I find it keeps me awake. I concentrate on it form a very short time and then try to divert my attention to some other topic.
Posted: Wed Apr 16, 2014 4:02 am
Yes, the breathing thing does not always work for me either. I have a bad habit of staying in bed with the WED and kicking and kicking like a bicycle until it dies down.
Posted: Wed Apr 23, 2014 12:10 pm
I am somewhat of an anomaly with a CPAP. I experienced augmentation about 4 years ago and was using a CPAP. The RLS moved into my trunk. My hips and back would jerk. After about a year I noticed that the frequency of the jerks increased while using my CPAP. They even did a sleep study on me to get data on this. I stopped using my CPAP after that.
Posted: Mon Apr 28, 2014 4:53 am
srgraves01 wrote:... the frequency of the jerks increased while using my CPAP. They even did a sleep study on me to get data on this. I stopped using my CPAP after that.
Is that what your doctor(s) recommended, or is that what you thought was best?
Was there any discussion that adjustment of the pressure setting on the CPAP might alleviate the PLMS, or switching to a different type of machine?
Posted: Fri May 23, 2014 1:26 am
Several adjustments were made. I also tried a more sophisticated type of CPAP that adjusts itself to the person. Nothing helped. I can't explain it. It's just something about me.
Posted: Sun Jun 29, 2014 9:38 pm
Wish I had seen this thread long ago, but I do want to give some input about the cpap. I use one for my sleep apnea. Are posters here saying a cpap was prescribed specifically for their RLS/WED and they don't have sleep apnea? I haven't been around here for a while and wonder if something is new? For those who are prescribed a cpap for sleep apnea but also have Periodic Limb Movement Disorder, there is a known phenomenon called "masking" in people with that dual diagnosis. Both of these conditions repetitively disrupt sleep stages. If you use cpap to resolve the apnea, there will not be apnea events competing with the jumpy legs, so the PLMD can fully manifest. The flip side is also true. If you treat the legs and get them quiet, undiagnosed or subdiagnosed severity in sleep apnea can be expected to worsen. Either way it's like a game of cat and mouse, and a person can feel like their treatment is not helping when indeed it is but an additional problem needs treated also.
If you used cpap and your legs got worse, that's exactly what I would expect in one with sleep apnea. The cpap doesn't cause them to get worse, it allows them to do what they already wanted to do but didn't have the opportunity due to poor sleep from the sleep apnea.
Again, if cpap is being prescribed for legs, I'd like to know.
Posted: Sun Jun 29, 2014 10:49 pm
Are posters here saying a cpap was prescribed specifically for their RLS/WED and they don't have sleep apnea? I haven't been around here for a while and wonder if something is new?
In my case I was simultaneously diagnosed with both WED/PLMS and a mild form of sleep apnea that required treatment with CPAP. The CPAP was not prescribed as treatment for the WED/PLMS, for the WED they started treating me with pramipexole (this was the first time I received a WED diagnosis and treatment). I can also state that in my case the WED was the more severe condition, so if there was any masking it was that the PLMS were preventing me from getting me into the deeper levels of sleep where sleep apnea becomes a problem. I should also add that I do not have centrals and only one or two true apneas each night. My sleep apnea problem is a large number of hypopneas that were causing frequent microarousals that were destroying my sleep.
Posted: Mon Jun 30, 2014 2:17 am
Sleep apnea can be one of the causes of WED/PLM. For me my WED/PLM was diagnosed first. When it was getting severe, then they had me do a sleep study. They found severe sleep apnea. So I am stuck with both.
Posted: Mon Jun 30, 2014 7:01 am
As I understand it, a person with apnea may have PLMS. So may a person with WED. Of all the people with PLMS, only 20% have WED. So, PLMS can be associated with many, many sleep disorders, but none of these cause WED to my knowledge.
It's only PLMD - a disease/disorder - if there are NO other sleep issues.
If anyone knows of apnea being responsible for WED, please let me know the research so I can add it to our list.
Posted: Mon Jun 30, 2014 6:01 pm
That's what my doctor told me that sleep apnea could cause WED/PLM. Maybe they didn't know it was only PLMS.
Posted: Mon Jun 30, 2014 7:41 pm
There are often limb movements related to sleep apnea that are a part of the struggle to breathe. Those should be delineated on the sleep study report. Those will likely resolve with CPAP treatment. Having limb movements observed on a sleep study is not the same as having PLMD. Movements from actual Periodic Limb Movement Disorder have to meet a specific set of criteria to be assigned this diagnosis. It can be hard to correlate anecdotal evidence without knowing exactly what limb movements are being compared. The etiology of PLMD is still not clear, and it is thought the causes are multiple, making comparisons even less valid. Some commonly held thoughts... dopamine dysfunction in the brain, nerve damage anywhere along the pathways, medication side effect, and some believe low oxygen from sleep apnea is a cause. How much science is on any of these is another story. Maybe they are each true for someone's case. I think that's why it's so hard to find a consensus among sufferers on the effectiveness of treatment - the origins aren't the same. Each person has to try for themselves and see what works. And give the effort a decent chance to work. When I first started using the TENS I experimented with electrode placement to the point of misery. Finally settled on the lower back and even then the effect seemed to be more pronounced over time. Had I tried and quit at my early failures, I wouldn't have stumbled upon what has been my limb movement solution. To be honest I suspect that the TENS wouldn't be as effective for those who experience them as a side effect of medication. Just my gut - no science. I can't help but wonder if me getting the dopamine agonist on which I was augmenting out of my system might have played a role in the increasing positive effect of my TENS use. Who knows. That's what's maddening about all this. Much is thought, little is known. When it comes to sleep apnea, I am a huge proponent of treating it no matter what struggle or discomfort that entails with coexisting conditions. I believe it was effectively treating my OSA that gave me the edge, the extra degree of health and energy, to then work on my residual issues. Didn't stop my limb movements, but it gave me strength to endure a little longer.
Posted: Mon Jul 14, 2014 3:30 am
My father used to snore horribly, and he would stop breathing. We didn't know about sleep apnea then.
I wasn't surprised when I was diagnosed with it. But after i began taking Methadone, I got another sleep test. The doc called me one afternoon sounding very distressed and said: "Well, you don't even try to sleep at night." He said I had now progressed to "central" Sleep Apnea and sent me an oxygen concentrator -- It has a thin tube of 100 oxygen that I put in my CPAP.
I think they're trying to make them smaller and more compact -- but right now mine is bulky and heavy and a pain in the **** to travel with. Apria is the company I work with on it -- and I must say they are the nicest people I have ever dealt with. They even answer the phone!!! WHen I was on vacation in Maine 3 years ago, an Apria guy drove 2 1/2 hours to replace the concentrator they had delivered before I got there,which had broken. They are fantastic. When I go on a trip, I call them and they have one delivered (but when I drive to my daughter's in the mountains, I put it in my car.