periodic leg movement

[GWild]

Based on what I experienced with a spousal unit, the tidal fluctuations would be something to explore for leg movement.

Recently saw a neurologist for weird body sensations. He suggested it might be RLS, then said I needed an antidepressant. When I countered with my adverse reactions and experience with one particular SSRI he fired back - annoyed I'd question his knowledge on the subject - and said there's no such thing. Turn's out NIH data says 5% of people prescribed this SSRI have adverse reactions, similar to mine. NIH's words, not mine. I am trying to get in to see a difference neurologist.

Back to the RLS. My sleep study showed zero leg movements or electricals that hinted at PLM, so until today I pretty much ignored the neurodocs comments of RLS. But, after reading up on RLS at Mayo's website today, the finer details fit my symptoms to a tee. As long as I am standing or moving around I am fine. But the moment I sit down or lay down - sleep is the worst - by body feels like it is in a paint shaker. I can feel blood coursing through my veins. I can even hear it. I've described it to docs as feeling like a firehose is plugged into an artery.

I couldn't imagine a worse hell, except maybe being on fire.

But the doctors I've spoken with all just think I am crazy. lol. Except the guy who said I should be taking the one drug I know I can't take. Fate, or what?

Has anyone else experience this RLS mode, and how the heck did you describe it to a doctor so they understood your symptoms?

[sheepless]

"Based on what I experienced with a spousal unit, the tidal fluctuations would be something to explore for leg movement."

"the moment I sit down or lay down - sleep is the worst - by body feels like it is in a paint shaker."

GWild, can you elaborate? not sure quite what you mean.

rls & plm come & go so not seeing it in your sleep test isn't definitive. also, some people have one or the other, some have both. if you have sleeping plm a uniformly repeating pattern should be apparent in your oscar flow rate waveform.

your description & doctor's response sound like rls is a guess. most people know if they experience it & no explanation is necessary. personally, I've never seen it described in the way you have but of course we can experience & describe things differently.

awake, usually in later afternoon and sitting, i can feel rls jolts from the small of my back down into my legs. it's impossible to sit still & it's terribly distracting, making it impossible to concentrate. I don't notice it when not sitting or lying down.

if I'm in bed trying to sleep, it's hell, as you say. I don't think the paint shaker analogy fits me, maybe because my movements in response to the rls jolts are voluntary & chaotic. I feel compelled to be in motion, mostly legs, but attempting to ease the restlessness can lead to full body movement. typically I'll mask off after 10 to 15 minutes, greatly frustrated, repeating several times. getting up & walking around feels better, but only until I sit or lie down again. strangely, it seems to ease up after midnight.

there doesn't seem to be much knowledge about rls & plm. there are a number of supplements & prescription meds available that may work for some & not others. in my very limited experience, antidepressants aren't often the first & certainly not the only thing docs will try to treat the problem. idk but guess s/he's trying to calm whatever it is that leads one to be overly aware of one's heartbeat & blood flow? it sounds like 'it's in your mind' rather than an attempt to treat the physical source of the problem, in my layman's opinion.

I've been taking ropinirole for a couple years. I don't think it's had any effect on my waking rls but subjectively I'd say it's reduced my plm by 75% (to make up a number).

more recently, a $30usd TENS/EMS unit has been working quite well for me (transcutaneous electrical nerve stimulation & electrical muscle stimulation). if I consistently use it on my back, hips, butt & rear thighs, it relieves my rls & my typical respiratory response to plm doesn't appear in my flow rate.

you may have to try a number of potential treatments to find what works best for you.

[Utah Desert Rat]

I've suffered from severe (whole body!) RLS with PLMD my entire life. I've had many different treatments, most all of which didn't work and just caused other problems. My husband and I both have science backgrounds, and we did extensive research on the subject. In the course of that research we read many of Dr. Christopher Earley's papers; Dr. Earley is a world-reknowned researcher and expert on RLS. We were extremely fortunate to have been living in northeastern North Carolina at the time, a 6 hour drive from where he treats patients at Johns Hopkins Baltimore. He took me on as a patient. His treatments have turned my life around.

Primary RLS is caused by an iron metabolism deficiency in the brain, causing a shortage of iron in the substantia nigra. The substantia nigra requires iron to produce dopamine, which affects movement. Dr. Earley orders infusions of iron dextran for his RLS patients whose ferritin levels are below 200-250 (we need more in order to overcome the deficiency and get enough iron into the substantia nigra). Oral iron does not metabolize properly for this particular issue.

I've had two iron infusions in the past 10 years, and they were miraculous. The effect lasts anywhere from one to five years. The infusions do not cause iron "overload", as long as they are of the recommended type. I suffered zero side effects from them both times.

My RLS being as severe as it is, I have to take supplementary opioids for "breakthrough". Opioids boost short term dopamine levels. Dr. Earley prescribes low-dose (2.5-10 mg) methadone, which has a longer half-life than other opioids and does not make you "high". I've been taking it for several years, and have not developed tolerance (have not had to increase dosage). Dr. Earley has authored a paper on methadone use for RLS which can be found on the internet (you may have to pay for the full text, I don't remember): "A 10-year, longitudinal assessment of dopamine agonists and methadone in the treatment of restless legs syndrome".

The best source of information for RLS/PLM that I have found is rls.org. Dr Earley works actively with them, much of their material and recommendations are based on his research and patient treatments.

Hope this helps some people! 

[sheepless]

thanks for the scoop! I'm sure it will help some folks.

it appears to me that the source of rls varies among individuals. in my case, iron levels are fine so I was never offered supplements, much less infusions! interesting to me, I believe mine originates in my lower back rather my legs. it makes sense that brain issues are involved but I can't make that association based on experience alone.

[Utah Desert Rat]

I should have mentioned that RLS can be -- and often is -- secondary to many other conditions. Pregnancy can cause it (temporarily!), for example. Your lower back certainly could be the cause. Primary RLS is usually a diagnosis of exclusion. In my case, I have a family history of it -- it's strongly hereditary. Unfortunate for my oldest son, who also suffers.

[kappa]

in my case, iron levels are fine so I was never offered supplements, much less infusions! 

Ferritin levels of 30-200 ng/mL are considered "fine" on the lab reports I have. Dr Buchfuhrer at Stanford is considered another expert in this field and suggests infusions for Ferritin levels under 100µg/L [==ng/mL], with "only iron dextrose, iron carboxymaltose, and ferumoxytol are effective. When the ferritin level is increased to over 200 µg/L, RLS symptoms may be dramatically improved".

[timpani]

When I was first diagnosed with sleep apnea, I had Cigna which refused to approve a sleep study for over a year. Finally my sleep doc was able to get them to approve it and not only did they discover I had PLM, but it was worse than my apnea. I'm on Pramipexole for the PLM and it's much better.

[Chequebook]

How are you getting on now?

My own history is of fighting tiredness my whole adult life (40+ years) and having RLS feelings getting worse.  I took Gabapentin for 12 months as treatment for nose pain, a legacy of turbinate reduction hoping to address that tiredness and snoring, with no change in RLS or tiredness.  After a sleep study, CPAP, BiPAP and tweaking following advice here led to no lasting improvements my sleep consultant said "You have PLMS".  Alas, treatment with, successively, Ropinrole, Pramipexole and Pregabalin led to no noticeable improvement and I decided to give up medication to avoid the risk of augmentation making things even worse.  My standard Iron blood tests were all within limits (see below).  My bed sheets are crumpled every morning and my wife says I twitch a lot in my sleep.  

As for how that makes me feel, I'm now getting suicidal with feeling crap and its effects, notably depression for which my basic character makes me vulnerable. Fortunately I'm in no danger of harming myself, at least yet, so please leave any comments on this for my treatment thread that I'll update shortly.  I can see why RLS/PLM has a higher suicide risk (see eg https://www.ncbi.nlm.nih.gov/pmc/article...20examined.)

Blood results (acceptable range in brackets):
Haemoglobin 148 g/L (130 - 170)
Ferritin 137.6 ug/L (30 - 400)
UIBC 53.0 umol/L (20 - 62)
Iron 16.0 umol/L (6.0 - 34.5)
Total iron binding Capacity 69.0 umol/L (45 - 70)
Transferrin saturation 23.2 % (15 - 45)

[sheepless]

Chequebook, thanks for sharing your story.

you're lucky your consultant pointed out your plms. my sleep doc failed to mention that plm was a factor in my sleep study even after I complained about rls several times.

I'm not sure who you're inquiring about. I'll update my situation but it may be repetitive if you've read through this whole thread. I hope others will reply as well.

like you perhaps, pap treatment of apnea helped a lot but not enough. my sleep is less fragmented than before pap but still too much so even after 5 years of pap & 2 or 3 taking ropinirole. I rarely reach rem sleep, presumably because I don't very often sleep longer than 2.5 hours at a time. (I'm thankful for that though - it used to be just minutes at a time.)

my waking rls has become much more frequent & intense. idk if (or how to tell if) it's a 'natural' progression or ropinirole augmentation. I quit gabapentin because I felt my rls was getting worse. no idea if that was why, but it surely wasn't getting better.

rls now occurs more days than not & has become noticeable earlier in the day. I can't take an afternoon nap because of it.

otoh, 2mg ropinirole at 7pm & again at bedtime around 9 or 10 keeps my sleeping plm to before midnight. it usually takes 2 to 3 attempts to sleep before plm subsides around midnight allowing me to sleep longer between awakenings. I assume ropinirole is helping my plm because I see it in my flow rate all night if I forget to take the 2nd dose.

the good news is that I've had good luck using a $30 usd TENS/EMS unit. I use it for an hour evenings when rls is present.

lately I've taken to wearing the electrodes to bed with the timer set for 50 minutes. pads stuck to upper rear thighs, it has enabled me to sleep longer before midnight. I don't see near as much of my plm respiratory pattern in my flow rate most nights I do this.

worsening rls is a concern. I didn't know about the suicide rate but I can kind of understand why. I don't know how I'd cope if mine didn't subside by midnight. if it gets much worse I'll have to try something different.

on a different note, I'm curious to know if anyone with rls/plm also has adhd. I'm convinced there's a relationship between apnea & adhd and apnea & depression. I suspect rls/plm is related too. it's easy to intuitivelly link adhd & depresson to sleep deprivation. rls/plm not as clear to me but I suspect they're all related nonetheless.

[Chequebook]

I've seen and read many lay, professional and academic articles on depression and sleep problems such as apnoea. They all agree that there is a strong link in both directions between depression and sleep apnoea. I've not seen anything identifying a common cause rather than depression and sleep problems' being cause and effect.

My wife's grandson, now 6, has ADHD in that he is hyperactive and has difficulty concentrating, but he is an intuitively bright boy and easy to manage. IMO it is just one of many challenges he's faced from his mother being relatively very old (45+) at conception. He sleeps over with us occasionally and frequently wakes up in the night, seemingly unable to get back to sleep easily. Whilst I put most of the cause as his parents' behaviour that has encouraged him to do this, there may be some link with his ADHD.