Yet Another New to Site but Not New to RLS

sleepdancer · Post by **sleepdancer** » Fri Dec 10, 2010 4:46 am

Introducing myself... Dx with RLS and PLMD in the late 90's. Also have obstructive sleep apnea and use CPAP. Been thru Sinemet, Mirapex, Neurontin, & Requip (all with eventual side effects and/or augmentation). Currently taking no Rx meds (3 weeks) for the RLS/PLMD and seeking ideas for non pharmaceutical solutions. Do take some supplements per Dr's instruction. (Multivit, Iron, Calcium, Magnesium, Zinc, Vit D, Potassium). Considering acupuncture. Currently using a TENS Unit with electrodes placed on my lower back and I'm highly encouraged that only 2 nights were what I'd call bad, but even my worst night recently was far better than my best nights in the past couple years on the Requip that I just quit taking after 3 years. My sleep disorders, along with some other health problems, resulted in early retirement on disability. At my worst, during a prolonged period of a few years of severe augmentation, I video taped myself sleeping and that video is on YouTube under the user name kickemhi. Lately I'm not kicking so high (thankfully), but I feel there is improvement yet to be had, and I'm hoping to learn from others here how they are achieving restful sleep.

Post by **ViewsAskew** » Sun Dec 12, 2010 7:45 pm

Hi sleepdancer - glad to hear that things are better off the drugs. I'm also familiar with augmentation - that has got to be the worst possible place to be!

The search function here isn't great, but it might help you get some background on it. I just searched on TENS and found several threads in which it's discussed.

My guess is that TENS is like acupuncture - works for some, doesn't work for most. For some odd reason, almost everything works for someone.

Hopefully you'll be one that it works for consistently.

Post by **badnights** » Sun Dec 12, 2010 9:04 pm

Hi sleepdancer. If the TENS works, it would be helpful if you could explain where you placed the electrodes on your body (and which was + and which -), and what type of signal you were using (frequency, modulation). I don't understand that frequency/modulation stuff but if you sent enough info, someone else could set up the machine the same way without needing to understand it. If you find a way that works, that is. (I think you said in another thread the TENS is mostly for your PLMD and not RLS.)

I think the same applies for acupuncture, it must make a huge difference where the needles are placed, but few people ever mention it.

I saw your youtube video. Absolutely crazy. It's not so bad now that you're not augmenting?

sleepdancer · Post by **sleepdancer** » Sun Dec 12, 2010 10:02 pm

My machine has some presets so I just push the button for lower back. I use it for about 20 minutes just before bedtime. I've played with the electrodes placement and tried numerous locations on the feet, legs, and back. I'm sorry, but I don't even know about postive and negative on the electrodes. The only placements that give me a few hours of good sleep are with all 4 very low and close to the middle on the back. So far I haven't seen a big difference between whether the leads are in a box or in an X as I just started switching it up. A few nights I ended up getting back up and doing it all over again when I saw the night wasn't going well, but I haven't had less than 5 decent hours sleep a night for 2-3 weeks, and most nights are 6-7.

As far as my video, those exaggerated movements were a result of augmentation on Mirapex. I have another video to post that is my movements while still on Requip and the movements are more what is expected with PLMD, lots of feet and toes contraction/release and some lower leg movements, and a few larger leg "lifts". If I can trust how I feel, I don't think my movements are nearly so intense since using the TENS. On my last sleep study, it was said my RLS was more problematic than my PLMD, but I don't think that's the case lately. I plan to vieotape again soon for comparison.

Post by **Polar Bear** » Mon Dec 13, 2010 3:22 am

vuewed the video - wow, that's some kicking. !!!

Post by **badnights** » Mon Dec 13, 2010 8:43 am

the positive and negative are just the different colors, usually red and black.

cornelia · Post by **cornelia** » Mon Dec 13, 2010 12:54 pm

How can they detect from a sleep study that your RLS is more problamatic than your PLMD? I thought there is no RLS during sleep.

Corrie

sleepdancer · Post by **sleepdancer** » Mon Dec 13, 2010 6:34 pm

My lead wires are both brown. My electrodes are all white. each lead splits to accomodate 2 electrodes. Are these positive and negative, or are both on one lead postive and both on the other lead negative? Gee, I'm seeing how little I know about this thing I'm using.

Post by **badnights** » Mon Dec 13, 2010 9:53 pm

Sounds like I don't know either. My unit is very different, I guess. I suppose each of your lead wires splits into a + and a - and it doesn't matter which is which.

SquirmingSusan · Post by **SquirmingSusan** » Tue Dec 14, 2010 4:50 am

Wow, that video is just painful to watch. I'm glad things are better now.