non med treatment for PLMD?

[stovertrina]

Hi,
I was just diagnosed with PLMD. I do not have RLD. My doc prescibed Sinemet; however, I would like to try non medical treatments first. Any suggestions? I have research on line and most all sites about plmd are mostly about restless leg.

[mupimohan]

In my opinion there is really no need to treat PLMD.
It happens when the person is asleep and the person is not
at all aware of it. Unless your partner is bothered by your leg/arm movements
when you are asleep why bother to take meds if you are sleeping
through.

Almost all meds have side effects. If you dont have RSL, in my opinion
you dont have to bother with any meds for PLMD.

If you have been diagnosed with sleep apnea get treated for that.

In my first sleep study I had 50 leg movements overall. With CPAP
(treatment for sleep apnea) it was 20. I was told that sleep apnea
makes PLMD worse. I dont know how they are related. It seems
that if upper air way breathing is obstructed the leg movements increase. You
just have to take what they say.

CPAP sucks too. Again the idiots who make the masks dont seen to
test on themselves. So far I have not found a mask that would let me sleep
on my side. Tried ACTIVA, Comfortlite2, swift etc. They all suck
Not to mention the intermittent noise the CPAP machine makes. I just
cant fall asleep with that noise. Tried running a fan for background noise
but didnt help.
So after some 1-2 hrs every night I just remove the mask and turn off
the fan and sleep the usual way and wake up tired.

Boy! what a treatment. I dont know how people use CPAP and
claim that they sleep like a baby!

sorry for the rant. Had to vent it out.

[stovertrina]

Actually, I am have a lot of trouble sleeping. I have mild apnea and PLMD. Between the two and wake up all through the night. I am going to try to lose weight for the apnea, but the doc wants to treat the plmd.

[mupimohan]

I also have apnea/hypoapnea and PLMD

but the leg movements decrease if apnea is treated, that what
my neurologist told me. I am not happy with my neurologist but that
is a different story. I am stuck with her because if I go to another
doc they will ask me to go through the sleep study all over again and
blue cross may not pay for 2 more sleep studies within such a short period.

apnea is a more serious illness than PLMD.

There is no cure for PLMD or apnea. But to treat PLMD
you have to be on those medications which are used to
treat parkinsons disease. I dont want to take medication that
mess with my CNS (central nervous system). If your CNS is
fine why bother to mess with it. PLMD is not considered a
disease. Like I said most people sleep through it. It is the
OSA (apnea) that wakes the person repeatedly.

You can take Benzodiazipines like KLONOPIN for PLMD but
benzos will soon wear off as you develop tolerance and
you have to keep increasing the dose.

I dont care if I cant sleep 8 hrs but if I can get my apnea treated
by purely non invasive methods (CPAP) and get atleast 5 hrs of
restful sleep I would be happy.

BTW I am of course not a doc or a medical personal.
Most of what I know is from reading stuff on the internet.

Mohan

[mupimohan]

oh yeah forgot to tell you. For the past 15 yrs I have not slept well a single
night. I took a sleep study 8 yrs ago. That SOB said there is nothing wrong.
But when I asked for that report now to show it to my current
neurologist she was surprised to note that I indeed was diagnosed with
apnea but that SOB said it is mild and didnt even tell me.

I am even thinking of sue him now. May be 8 yrs ago CPAP
equipment was not as high-tech as it is now. Still I can sue him for
not even trying to treat a life threatening illness however mild it was.
Seriously. I dont want money. I would like to sue him and see his
license cancelled. If he is still in practice I will go see him with that
report and ask him what the hesk he was thinking

I have been thinking all these years that it is my anxiety that is
causing insomnia. But I would doze off sitting on a couch so I
wondered why I couldnt sleep when I lie on bed. Now I know it is
apnea and also PLMD.

I dont sleep well at all. I get dreams almost every night but
I wake up so many times, toss and turn all night. So the sleep
is fragmented and hence the day time fatigue.

I am on CPAP. I stopped med for PLMD (Neurontin) as it
caused my arms to jerk. So I decided not to take those meds
that mess with the CNS.

CPAP isnt working yet. last night I had the mask for 7 hrs but I still
woke up, tossed and turned. I have to go see my neurologist Friday
and ask her what the hell is going on with CPAP. It was worse when I
was taking neurontin. The medication kept me awake almost all night.
I dont have any leaks or issues with the mask (ACTIVA by Resmed)
so I wonder why I cant get good sleep with CPAP.

sorry for the rant again. Venting might help me relax a bit and
sleep better

I walked for 45 mins on my treadmill today. Lets see if that helps
at all. I just dont feel tired at all. I did yard work yesterday from
9 am to 4pm. I was acking from head to toe, dozed off listening to
music on the couch at 10 pm but when I went to bed I was wide awake as
an owl. woke up a million times, continued my dream where I left before
waking up. Strange huh?

Anyone can explain this. I have to ask my stupid doctor what the
hell on earth is going on. She is blaming all this on the chin strap.
She wants me to use that 'Delus Chinstrap" on CPAP.COM
Yeah right that is going to be the miracle cure for my sleep problem!
I told her I am not a mouth breather and the one time I opened my
mouth during sleep study was just a freak incident.

Anyway... time to go to bed and try that stupid CPAP again.
Mohan

[alwayslateforwork]

I strongly disagree with mupimohan -

[rfish1966]

I also strongly disagree with mupimohan-
There are plenty of reasons to treat PLMD, number one would be that even if you stay asleep it can still keep you from getting stage 3 and 4 sleep which is where your body pumps out growth hormone and repairs tissue etc. As a matter-o-fact I could not tolerate cpap till the PLMD was treated. So just because you sleep thru it does not mean it's not screwing up your sleep.

P.S. I have apnea, RLS and PLMD

[rfish1966]

mupimohan-

My guess once you get the PLMD under controll, adjusting to cpap will be much easier. Yes there are a lot of meds that mess the the CNS but you would be suprised how safe and effective low dose narcotics like tylenol3 work. Neurontin is not a very good treatment and the side effects are a pretty sure thing. I had tried lyrica which is the newer version of neurontin and gained about 20 pounds and almost a divorce. I used tylenol3 for almost a year with no problems and had no problem stopping at the low dose I was on. Just my .02.

Randy

[worknonjoy]

I just came back from the Patient Conference and a nurse at one of the Sleep Centers told me that B12 was what they tried for their patients that had PLMD. She said that PLMD can make one very fatigued and must be treated.

[sleepyjo]

I agree with the others, PLMD IS a serious sleep issue. During my last sleep study, my doctor told me that during the first three hours of my test, the limb movements were so frequent that I had no deep sleep at all; almost like I wasn't even sleeping. She said no wonder you are still tired. I also have sleep apnea, and although it's not perfect, I feel WAY better than before treatment. Not really sure about the PLMD, it's hard to tell if anything is working, because I am asleep and don't know if I am moving or not! And my husband sleeps like a log, he never notices anything. I also take a low dose of xanax at bedtime, it does seem to help.
I am also interested in non drug treatments, maybe I will try the B12. Can't hurt. I have RLS as well, but it's infrequent, and as long as I just move around a little, it goes away.
My doctor believes that the anti depressant Effexor is what's causing the PLMD (she says all anti depressants can cause it), but when I tapered off it, other health issues came back that were more bothersome than the PLMD. Anti depressants are useful for treatment of other than just depression/anxiety. So, darned if I do, darned if I don't.

[GOT SLEEP?]

I have been recently diagnosed with severe case of PLMD. I always woke up exhausted and feeling like someone had beaten my body with a bat. My doctor first did blood work to check my ferritin level-(iron storage). I was below normal. Normal levels range I believe from 10 to 200. He said that my ferritin level has to be at 50 to rule out low levels of ferritin as cause of the PLMD. I am on iron supplements. I have gone from ferritin level of 4 to 30. In the meantime I am on low dose of Requip. I tried to go without requip but I was having so many muscle spasms. The plan is once I reach ferritin level of 50, I will go off requip and see if I can survive without it. I also take extra strength tylenol at bedtime. So ask your doctor to test your ferritin level.

[dian]

I too searched for answers for sleep problems....actually my problem with my spouse moving every 6 seconds all night long. After visiting web md and many other site I decided to send feed back in which I am sure many others did as well. point being there is alot more info now
http://en.wikipedia.org/wiki/Nocturnal_myoclonus
http://www.webmd.com/sleep-disorders/periodic-limb-movement-disorder
http://www.webmd.com/sleep-disorders/periodic-limb-movement-disorder
http://www.sleepdisordersguide.com/plmd-treatments.html
http://www.emedicinehealth.com/periodic_limb_movement_disorder/article_em.htm
were of help to me as We had taken the advise of a wife that had created a page for all people to know that in 25 years of marriage to a plmd spouse they had done the meds well he had and all that did was distroy his sleeping as well as hers and they got results from folic acid being added to his diet....worked for us for 2 years now but the vitamin industry has reduced those properties in the daily vitamins so we are again looking for better natural answers because meds are not what i want him to take and i neeeeeed sleep ha ha...prefer to sleep together also