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thanks for the details, foxfire. I'd think 25 arousals/hr from any cause would leave us worse for wear. your dying fish routine sounds a bit like my being on a rotisserie. I sleep on my sides. especially pre-cpap, I woke and changed sides so often it was like being on a rotisserie. I joke(d) about sleeping 9 minutes at a time. it's better with asv but still not that far off. plm was noted in both our sleep studies. your doc didn't want to mess with it. mine ignored it. your sense is that there aren't good treatments for plm? guess that's in terms of pharmaceuticals. I've heard that naturopaths will address things that western med docs won't, like adrenal fatigue. that and the references to potassium, magnesium, ferritin (whatever that is), iron, vitamin d, etc. in above posts suggest alternative therapies. does anyone have experience with doctors of naturopathy, generally or for plm?
RLS is voluntary movements while awake in response to the sensations. You can keep your legs still but it will drive a person nuts.
PLMD is involuntary movements while asleep. The movements can be linked to long apnea events.
PLMS is involuntary movements while asleep and happens in a lot of folks with RLS.
(bolding in the quotes below are mine. source is at end)
Quote:The four cardinal diagnostic features of RLS include (1) an urge to move the limbs that is usually associated with paresthesias or dysesthesias, (2) symptoms that start or become worse with rest, (3) at least partial relief of symptoms with physical activity, and (4) worsening of symptoms in the evening or at night.
Quote:RLS frequently also has a primary motor symptom that is characterized by the occurrence of periodic leg movements in sleep (PLMS). PLMS occur in approximately 80% to 90% of patients who have RLS and support the diagnosis of RLS.
Quote:PLMD is characterized by periodic episodes of repetitive limb movements during sleep, which most often occur in the lower extremities, including the toes, ankles, knees, and hips, and occasionally in the upper extremities. These movements may be associated with an arousal, and if so, sleep disruption can cause excessive daytime sleepiness. PLMD is thought to be rare as PLMS are typically associated with RLS, REM sleep behavior disorder (RBD), or narcolepsy and represent a distinct diagnosis from PLMD.
Quote:The only objective measurements included are sleep-related parameters by polysomnography (PSG) or actigraphy. The most salient include Periodic Limb Movements in Sleep (PLMS), PLM index (PLMI), PLMs arousal index (PLMS-AI), and sleep efficiency.
Machine: Aircurve10 ASV in CPAP mode Mask Type: Nasal mask Mask Make & Model: Resmed Humidifier: built in. CPAP Pressure: 6.6 CPAP Software: SleepyHead
(08-29-2018, 05:12 PM)sheepless Wrote: thanks for the details, foxfire. I'd think 25 arousals/hr from any cause would leave us worse for wear. your dying fish routine sounds a bit like my being on a rotisserie. I sleep on my sides. especially pre-cpap, I woke and changed sides so often it was like being on a rotisserie. I joke(d) about sleeping 9 minutes at a time. it's better with asv but still not that far off. plm was noted in both our sleep studies. your doc didn't want to mess with it. mine ignored it. your sense is that there aren't good treatments for plm? guess that's in terms of pharmaceuticals. I've heard that naturopaths will address things that western med docs won't, like adrenal fatigue. that and the references to potassium, magnesium, ferritin (whatever that is), iron, vitamin d, etc. in above posts suggest alternative therapies. does anyone have experience with doctors of naturopathy, generally or for plm?
Your rotisserie analogy sounds exactly like what I experienced.
The functional medicine doctor (he's an MD) that I see suggests maximizing magnesium supplementation to the limit of bowel intolerance for RLS/PLM. Seems like it may be somewhat helpful, I don't seem to toss and turn quite as much.
(08-29-2018, 04:02 PM)sheepless Wrote: "we don't treat that". sleep labs, sleep doctors, sleep medicine - wouldn't you think they'd treat all sleep problems? don't want to take the lid off that can of worms but it does seem that many just churn cpap and it's a battle to get help for anything else. I hope your doc gave you a referral or otherwise suggested what to do about plm? seems irresponsible if they ignored it.
Over here in the UK they will address it. They are aware that this often happens with Sleep Apnea and after you are under treatment and it still happens they will try to stop it if it is a problem.
I used to have bed problems before I had treatment for Sleep Apnea, after I got the machine it more or less stopped. The other half used to complain about my legs moving and kicking her. After I got a CPAP the complaints stopped.
Then I had a cancer scare and then the real problems started!
After Chemo' my legs would not stop moving, spurred on by my nervous system, even my toes join in, they curl over and be painful as well when doing it. I got capsules to deal with it, but sometimes I have to take more than prescribed just to stop lags from taking control of me. Even during the day they will move on their own if I am not thinking about keeping them still or using them. They are no problem if I am using them to do something like walk or drive, but if I am just sitting watching TV they will start to move, very little at first, but they will build up their movement. If I take another capsule they will stop moving for a while. I know it is more than likely that the Chemo' has done something to the nerves, but I can control it (for a while anyway) and I have known others get these when on cpap to stop leg movement.
However, If leg movement is not a problem to you over here they will ignore it. It is only when you complain that it is affecting sleep or your partners sleep they will do something about it.
In my case a few doses of a drug cures it, I don't know what I would do without them.
I am NOT a doctor. I try to help, but do not take what I say as medical advice.
Every journey, however large or small starts with the first step.
photo kind of supports my thinking that periodic limb movement is a problem for me. in case it's not obvious, this is my bed, showing worn sheet at calf/ankle position. changed doctors, now increasing dosage of ropinirole; each increase seems to produce good results for a couple days before indications of plm start up again in my flow rate. however, each increase has trended toward lower ahi, fewer awakenings and an unusual feeling of wellness that I haven't experienced in decades. might be a light at the end of the proverbial tunnel I hope.
Machine: Resmed Air Curve 10 VPAP mode Mask Type: Full face mask Mask Make & Model: Resmed Airfit F20 Medium Humidifier: VAUTO's original: 5 CPAP Pressure: EPAP:8.8 IPAP:18.0 PS:4.4 CPAP Software: OSCAR
Other Software
Other Comments: The goal is to turn data into information, and information into insight. (Carly Fiorina).
great news! Your PLMS was indeed noticeable, as per by the books!
I have also my news on RLS/PLMS: after almost 1 year of therapy, carefuly observations, medications and so on, 1.5 months ago I realized I do have RLS since kid, BUT DON'T HAVE HAVE PLMS! Great surprise for me!!
That is, I would be within the rare 15% people who has RLS but not have PLMS.
Very minor PLMS, when happens at night, I am in general able to sleep through them. However, I keep going with RLS when I wake up at night, bringing difficultis to fall back to sleep (some sedating medication is helping; for while).
What I had interpreted as PLMS about almost 1 year end up being actually genuine catathrenias (one thing I had no idea since recently).
Thereforee, I am now facing new horizons on my therapy; yet catathrenia (0.5 to 2.5/hr in my case) has been harding to tame . It does not respond to any medication. However looks not to be idiophatic as per some literature. In my case, looks somehow associated with respiratory effort (sometimes up to 1 minute before each event).
On account of this realization, I have decided to start all over again: now in a process of self new tritration with Aircurve 10 S Mode. It looks I am doing well so far.
02-07-2020, 08:52 AM (This post was last modified: 02-07-2020, 10:59 AM by DaveL.)
RE: periodic leg movement
(08-28-2018, 06:19 PM)PaulaO2 Wrote: There's been a recent turn of the tide that believes RLS happens in sleep. The line between the two is thinning.
For OSA folks, the leg movements often occur at the same time as an event. It is our body trying to wake us up.
Anyone who has RLS or PLMD should have a full blood chemistry done to see if any levels are off. Like iron or potassium. It is a good starting point and rules out a plethora of other causes.
I use potassium (in foods) to treat a bad day with RLS. And my PLMD dropped significantly once I started CPAP. Mine were quite violent. I once kicked my 80lb Rottie up and over the footboard. She was not amused. When I was in college, room mates hated to let me go to sleep first. I was on big twitch, apparently.
And to get the scoop on a medication as the cause, talk to your pharmacist.
This is very helpful!
I was diagnosed over 35 years ago. Sleep doc. Two sleep studies. They confirmed Restless Leg Syndrome and severe OSA. My RLS has never been treated. It was confirmed by my new sleep doc when I had my sleep study with him. That was about 15 months ago...
Point is that that Restless Leg Syndrome was confirmed while I was sleeping, and that was over 35 years ago in London Canada.
So for me it's Restless Leg Syndrome, and my Golden Retriever won't sleep with me.
DaveL
compliant for 35 years /// Still trying!
I'm just a cpap user like you. I don't give medical advice. Seek the advice of a physician before seeking treatment for medical conditions including sleep apnea.
318 PLMS 54 per hour 13 PLMS arousals 2.1 per hour
iron and ferritin labs are recommended.
There does not seem to be much info on PLMS but it may relate to why I have EDS.
I am trying to find a Neurologist who can do a better Differential Diagnosis for Sleep Disorders and coordinate care and treatment.
Depression, ADD, high BP, heart, diabetes et all are related to OSA. I do not want to be on 5 medications that create problems.
My Goal is to improve my EDS which is worse upon wakening despite 7-9 hours sleep on APAP. Seeking differential diagnosis to coordinate care and optimize medications. Currently on Adderall for "ADD". Statins are recommended ( some affect sleep among other things) and BP meds. Since OSA is a risk factor I have spent two years trying to get my APAP properly titrated, this site helped me make adjustments.
Surprised there was so little on this site when searching Periodic Leg Movement ( PLM) which is not uncommon with Sleep Apnea. PLM is not well understood and there are few clinical guidelines.
A recent Titration Study was flawed; Limb Activity was 318 PLM in sleep, PLM Index 54.9 per hour (15 is normal), 13 PLMS Arousal and the PLMS Arousal Index was 2.1 per hour (normal under 5 per hour). Report only said check Ferriten and iron, mine are in range.
A new Neurologist with a Sleep Medicine certification agreed the Titration Study that changed my settings to 8 from 6-15 did not correlate with the Dream Mapper Data of sometimes over 10 cm@ 90% . AHI still 7 and above. Set now at 10-14c m for next 30 days.
I asked about the PLM at 54.9 that no one had mentioned, as a reason for EDS, and if it was causing sleep fragmentation etc. He said the Arousal index was low. If AHI is reduced it may help reduce PLM.
Some studies indicate PLM does correlate with EDS/sleep quality/sleep/fragmentation/disorders when Restless Leg Syndrome RLS is not present.
PLM may be sensitive to certain antidepressants. There does seem to be brain dopamingergic hypoactivity in PLM.
I believe dopamine levels relate to EDS/ morning depression. I would like a stimulant other than Adderall or Modifnel.
My question are once the pressure is "set" at one number, if AHI is not below 5 then what? How do you avoid having too high a setting and developing Central Apnea issues.
How to maximize a MSLT study?
I have been requesting a MSLT study for two years. To get Insurance approval first Titration then based on Epworth Score indication of Narcolepsy. ( answered as though not on a stimulant.)
Based on common sense the Titration study was not diligent. The tech stopped raising my pressure because "I stopped snoring at 8cm. He did not bother to look at the Dream Mapper data, as I requested ,which showed averages of 90% @9-11 and AHI of 7-11. What should I look for in a Sleep Lab, what should I insist on in the study?
I have learned much from this site and will submit data to Oscar from this 10-14cm setting to help prepare for the July Neurology appointment. I have an appointment with a new Primary Care Physician July 2nd. She has an interest in Sleep Apnea and Cholesterol management. I will learn her perspective on Stimulants, Statins and BP as it relates to OSA.
I am so tired of being tired. Finally hopeful for a favorable outcome.
Sleep Apnea is more complicated than other conditions and I have made a significant investment of time in learning about the condition. This site was very helpful. It should not be this hard to get a CPAP titration optimized and other disorders ruled out.
06-08-2020, 03:08 PM (This post was last modified: 06-08-2020, 03:19 PM by sheepless.)
RE: periodic leg movement
I'm slow and PaulaO2 and others (Opal Rose?) are way ahead of me.
it's been my understanding that while many suffer from both rls & plm, many others might have one or the other and not both. it had also been my understanding that rls occurs while awake & plm occurs while asleep. that these are two distinct conditions.
I'm starting to question this. for one thing, I see occasional references to plm while awake (is that why one use of the acronym plms is for plm in sleep? re-reading PaulaO's post above, I see it describes a distinction between plms and plmd).
then, not long after going to bed just last night, my wife elbowed me a few times to tell me I was full body jerking & moaning. apparently I was asleep but after the elbow I thought I was / had been awake with rls, which often bothers me in the hour or two before bed. that suggests to me my rls must bleed into sleep & is in some way related to my sleeping plm.
Shulamet, sorry for not addressing your italicized questions; I'll leave that to others, but thought I'd mention some similarities in our stories.
if EDS is excessive daytime sleepiness, there's no question plm can be a cause. your doc may think 2.1 plm arousals per hour isn't very much, but all my life people around me complain when they wake up just once in a night; ask him/her how they'd feel waking up 16.8 times per 8 hour night. and how many more times per night are you disturbed by plm if not fully roused?
there may be other issues contributing to your fragmentation and sleepiness but this one is documented. and like central apnea, plm can be quite inconsistent from night to night so you may (or may not) have had fewer the night of your test. with treatment, you could at least rule it out.
I had/have severe fragmentation, debilitating daytime sleepiness & cognitive impairment. I had depression-like symptoms from sleep deprivation. even after getting my ahi down to acceptable levels.
it took me quite a while to figure out I have plm and even longer to do something about it. I suspect the suggestion in your sleep study to check levels of iron and ferritin is boilerplate; worth doing but there are other treatments for plm as well. my iron, magnesium, ferritin (I think), potassium etc., are all normal. I tried gabapentin and am currently on ropinirole with some considerable but not complete reduction in plm. I read on this website about other meds folks take for it as well.
the upshot is that only after finding some at least partial relief from plm did I truly start to feel more like I think I should feel after a night's sleep. I still mask off a few times a night but plm is usually only evident in my flow rate at the end of a session once or twice a night; far fewer full awakenings than before. I rouse, roll over and go back to sleep much more easily than before the meds. I used to feel compelled to snack between short sleep sessions; no more!
like you, apparently, I have ADD, hypertension, high cholesterol / triglycerides and probably diabetes (struggling to change my diet and lose weight dropped my 2nd a1c test enough to postpone treatment; further testing postponed because of the coronavirus). to me, it's a no-brainer that sleep deprivation aggravates, if not causes ADD in some cases. I am convinced that untreated apnea (and plm fragmentation) significantly contributed as well to metabolic syndrome problems and diabetes, high blood pressure, cognitive impairment and depression-like symptoms. I believe that improving sleep is improving and will continue to improve these other conditions.
the most noticeable effect of pap initially was relief from acid reflux. otoh, I was disappointed when pap didn't bring my bp down. I have to wonder if the reason was/is plm continuing to mess with my sleep. on a positive note, I recently discovered that certain strains of cannabis that I use mostly to help sleep through plm, also substantially reduce my bp. with a couple prescription bp meds, my morning bp might be say 169/93; by bedtime, after cannabis, it's been lower than anytime in the 18 years I've tracked it: last night for example was 126/78. exercise has a positive effect too, just not as dramatic as the cannabis. I haven't yet learned how low is too low; one of the lowest measurements I've had in the last couple weeks was 78/47. what concerns me most though is the variance between high bp in the morning and low at night. is that an indication something isn't right at night?
I took generic adderall for ADD for 20 years. I quit both adderall and modafinil while trying to optimize my apnea therapy using apap, asv and bilevel machines. since starting ropinirole I've restarted a small dose of modafinil, which helps with wakefulness but not motivation as much as adderall.
I've said much of this elsewhere, maybe even in this thread for all I know, but maybe worth repeating.
plm complicates apnea therapy. I've learned that my fragmented sleep is affected by a) plm itself, disturbing during sleep and causing some full awakenings, and b) the machines' responses to non-passive flow limitations that follow the movements. runaway apap max pressure and wildly swinging asv pressure support were very disturbing. while asv treats my mixed apnea better, vauto or bilevel is currently my machine of choice because I can better restrict max pressure / pressure support to limit leaks, aerophagia and arousals from pressure changes.
my sleep doc ignored my complaints about fragmentation and rls (before I knew about plm). if he read the my full sleep study results he ignored my plm count, even after my complaints. it's up to us to overcome the docs' dismissal of our concerns. I gave up on the sleep guy and went to my family doctor for it.
Shulamet, I wish you the best and look forward to reading about your progress.
