PLMD

rapo · Post by **rapo** » Fri Feb 09, 2007 10:39 pm

OK...so during my sleep study it was found that I had at least 21 PLMD events per hour---is that alot? In any case, does cpap stop that completely? I've really appreciated all the advice from this forum--I've changed fittings of my head gear, learned where my outlet flow is, and all sorts of things about the machine and how to use but still feel like crap!

The minute I am in a vehicle--doesn't matter how much sleep I get---I am zonked. If I have to drive somewhere it literally drains me and if it's very far, have to roll down windows, chew gum, stop often etc etc.

Find myself asleep in middle of day not really sure how that came about etc etc?

tohegal · Post by **tohegal** » Fri Feb 09, 2007 10:45 pm

Did you get a daytime nap study too? It's called a MSLT...and it helps the dr see if you have excessive daytime sleepiness.

If you are so sleepy during the day....you may have narcolepsy or EDS (excessive daytime sleepiness)....
definitely get it checked out...

Paul B · Post by **Paul B** » Fri Feb 09, 2007 11:13 pm

My experience with PLMD is that sleep apnea treatment via xPAP will not diminish it. You need to look at a prescription for Requip or Mirapex for relief.

tohegal · Post by **tohegal** » Fri Feb 09, 2007 11:21 pm

or Provigil...

drbandage · Post by **drbandage** » Sat Feb 10, 2007 2:38 am

tohegal wrote:or Provigil...

Actually, Provigil addresses only the symptom of excessive fatigue. Fighter Pilot pills for those long flights and they are in common usage. Myself, I take 400 mg every morning.

The Requip and Mirapex actually suppress the movements themselves, and although are technically not "curative", do thereby limit the number of mini arousals you experience during a night. Hopefully, the result would be better, deeper sleep into Stages 3 and 4 and REM. And if they do a good enough job, you wouldn't need the Provigil.

Myself, I was first treated for severe PLMD because of the obvios presentation as confirmed by my spouse's report of me "dancing the mamba all night long". No wonder I was tired, right? There was no suspicion of OSA (normal build, no snoring, blah, blah) since the obvious culprit was so easily identified.

Bottom line, you can have severe PLMD and severe OSA (as I do) and you will feel exactly as you have described. XPAP will treat your OSA and Mirapex or Requip will treat your PLMD, but you may still benefit from Provigil if the treatment is not effective enough.

And if you have 21 events per hour, that's about one event every three minutes. So every three minutes you are aroused enough to "almost" awake which is similar to what will have with OSA. You won't desaturate because your airway is not blocked, but you won't achieve deep sleep either. And you have only three minutes to get down as deep as you can before the next temblor hits. Result is severely fragmented sleep. Not fun.

And sometimes the two don't play well together.

A recent study confirms previous findings that CPAP is a very effective treatment for OSA, and that PLMD is developed or worsened with treatment by CPAP.

Nice, huh?

Here's an interesting link if you'd like to have a bit more information:
http://www.koreamed.org/SearchBasic.php ... +%5BDPY%5D

This site has some good info about the meds:http://www.rlshelp.org/rlsrx.htm

This is a pretty nice site here, I think, not too technical: http://www.ninds.nih.gov/disorders/brai ... _sleep.htm

JohnMudie · Post by **JohnMudie** » Sat Feb 10, 2007 4:32 am

As Shultz would say, very interesting

And if you have 21 events per hour, that's about one event every three minutes. So every three minutes you are aroused enough to "almost" awake which is similar to what will have with OSA. You won't desaturate because your airway is not blocked, but you won't achieve deep sleep either. And you have only three minutes to get down as deep as you can before the next temblor hits. Result is severely fragmented sleep. Not fun.

And sometimes the two don't play well together.

A recent study confirms previous findings that CPAP is a very effective treatment for OSA, and that PLMD is developed or worsened with treatment by CPAP.

Cos that's whats happenong to me.
PLM 31.5/hr, fatigue increasing since I started CPAP. No treatment for PLM's so far.

So what's my next move?

Hopefully and gratefully

John

kteague · Post by **kteague** » Sat Feb 10, 2007 5:22 am

I too have OSA, RLS and PLMD. Effectively treating multiple sleep disorders gets complicated, but the effectiveness of OSA treatment can be verified with data, so if that is resolved first, the picture will be clearer. I cringe when I read stories of those who had significant limb movement issues on their sleep study, yet think their continuing daytime symptoms are all cpap based. I wonder how many have given up on cpap treatment thinking it wasn't working, when it was.

Over the 10 years since diagnosis, I have used Sinemet and Mirapex though I'm currently not using medication. My early PLMD was so tormenting that it was not a question of whether to take meds. I had no Stage 3 or 4 or REM sleep, and the joint and muscle pain compromised my life. At this point, my RLS is greatly improved. The PLMD, while so much better than at other times, continues to disrupt my sleep.

The whys and wherefores of these movement disorders are not certain, though theories abound. I happen to be one of those whose Ferritin level was at 26, which is within the "normal" range but not the recommended >50 or 60 for people prone to movement disorders. I also have a history of toxic inhalation of formadehyde. And nerve injury in my neck. But however it all started, managing the movements can restore quality of life.

Many find their movements do not disrupt their sleep enough to need treatment. For those who must resort to meds, I can only recommend starting at a VERY low dose and increase only as much as needed and as proves to be effective. Why endure side effects at higher doses if it's not fixing the problem? There's a fine line with these meds between helping and hurting. I find it interesting to read what other patients say about their experience with medications, so I visit askapatient.com when considering taking a new med.

Drbandage - thanks for again providing excellent resources.

Kathy

sharon1965 · Post by **sharon1965** » Sat Feb 10, 2007 11:05 am

i've been on cpap only 5 weeks and so far my results are: no more napping in the late afternoon or after work, whereas before i craved sleep all the time; no more 3 or more trips to the bathroom in the middle of the night and according to my husband, i'm sleeping soundly, no snoring, no talking, walking, running around the house, twitching and jerking the bed around--sounds great! but the most noticeable change, to me, is the relief from terrible pain in my right leg and sciatica due to plmd, where i moved my leg every 30 seconds or so...i keep thinking i should have a right thigh that looks like lance armstrong's from all that exercise, but, alas, not so...
i still feel like crap most of the time, wake up unrefreshed, headaches and sluggishness, will still sleep 14 hours on my days off and weekends,and my fibromyalgia symptoms have not yet begun to abate, but i keep hoping the aforementioned positives will continue to build...was i wrong in assuming the absence of leg pain (and diminished rls in the evenings) is due to cpap treatment?

drbandage · Post by **drbandage** » Sat Feb 10, 2007 12:52 pm

Drbandage - thanks for again providing excellent resources.

Kathy

You're quite welcome, Kathy.

It is important to be able to corroborate statements made with the evidence available, especially if asked to do so.

Unfortunately, one of the appreciable downsides of free form forums such as this board is that there are a lot of urban myths, and opinions that are put forward as "facts" or accepted as "common knowledge". Some posters can be particularly strident about that which they opine. Personally, I feel that the degree of stridency should be proportionate to the strength of the supporting evidence.

This site has been a huge help to me in understanding what seems to work best for many of the challenges of diagnosing and treating sleep disorders. I've put a lot of the ideas to the test here and come out the better for it, even if I can't explain why it works.

There is an old saying in science: "Absence of proof is not proof of absence." There is no reason not be curious about ideas and possiblities and alternate explanations. I typically tell my patients "If it works for you, it works for me", as they have found alternative treatments for their ailments which work when nothing else seems to. Certainly, there is nothing wrong with having opinons or theories, or suspicions, but they should be distinguished from statements of fact that can survive the hard scrutiny of serious scientific review.

Evidence-based medicine (EBM) has demoted ex cathedra statements of the "medical expert" to the least valid form of evidence. All "experts" self-proclaimed or otherwise (including those who post here) should be expected to be able to reference their pronouncements to scientific studies. Without the evidence to back it up, pronouncements are not to be confused with "the facts".

I enjoy your helpful and well thought out posts, Kathy!

kteague · Post by **kteague** » Sat Feb 10, 2007 1:46 pm

Drbandage,
Thanks for that timely reminder that discernment is needed regarding opinion vs facts in forums such as this. Your resources are always fact-based and I appreciate that. Personally, it is my opinion that everything I read (or say) should be considered an opinion unless evidenced. Though I am skeptical by nature, when a pattern emerges in people sharing a common issue, it does make me take pause and then put forth the effort of researching for any substantiating evidence. I hope my reference to askapatient.com would not cause anyone to stumble. It is a collection of patient experiences while on medications and in no way proves that any person's experience was directly or indirectly caused by the medication. I haven't minded poking through lots of stubble to glean a few seed thoughts, but that's just me. But I did want to follow up with a disclaimer on my referenced website.
Kathy

Snoredog · Post by **Snoredog** » Sat Feb 10, 2007 2:31 pm

here ya go Kathy:

This guy cured himself of RLS maybe you can too

yep Folate or Folic Acid. It is OTC and cheap.

http://www.sleepnet.com/rls3/messages/189.html

He claims it is even backed up by a doctor. After my stroke I went to UCSF Neurology, the Professor doctors had me taking Folate due to twitches and increasing blood flow to the brain.

I am free and happy and I love it! Incidentally, I'm not connected with this book in any way but the name of it is EAT RIGHT FOR YOUR TYPE by Dr. Peter J. D'Adamo. Get one from you library and try it out.

Ole Sandman over there would have blown that post away if it weren't true

drbandage · Post by **drbandage** » Sat Feb 10, 2007 2:32 pm

Personally, it is my opinion that everything I read (or say) should be considered an opinion unless evidenced.

Nicely put.

Though I am skeptical by nature, when a pattern emerges in people sharing a common issue, it does make me take pause and then put forth the effort of researching for any substantiating evidence.

That sounds very sensible!! It kind of reminds me of my mother's advice: "be suspicous of coincidence."

I hope my reference to askapatient.com would not cause anyone to stumble. It is a collection of patient experiences while on medications and in no way proves that any person's experience was directly or indirectly caused by the medication.

I haven't checked it out myself, but your logic seems impeccable!

I haven't minded poking through lots of stubble to glean a few seed thoughts, but that's just me. But I did want to follow up with a disclaimer on my referenced website.
Kathy

Well said, indeed, Kathy.

Here's something that Galileo observed (among other things!):

"In questions of science, the authority of a thousand is not worth the humble reasoning of a single individual."

drbandage · Post by **drbandage** » Sat Feb 10, 2007 2:37 pm

"As Shultz would say, very interesting"

See, we're all so different. I thought he said "Veeeerrrryy Intra-stink"

Rabid1 · Post by **Rabid1** » Sat Feb 10, 2007 3:30 pm

My sleep study indicated the following:

Leg movement index: 1.5/hr
Periodic Leg Movement Index: 27.95/hr
Periodic Leg Movement Arousal Index: 0.5

Would someone help me understand the implictaion of these numbers?

Thanks,

Rick

Rabid1 · Post by **Rabid1** » Sat Feb 10, 2007 6:00 pm

[quote="Rabid1"]My sleep study indicated the following:

Leg movement index: 1.5/hr
Periodic Leg Movement Index: 27.95/hr
Periodic Leg Movement Arousal Index: 0.5

Would someone help me understand the implictaion of these numbers?

Thanks,

Rick

Machine	Mask	Humidifier

Additional Comments: Getting tired of feeling exhausted so often during the day and having to nap

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