home monitoring of RLS?

gracie99 · Post by **gracie99** » Sun Sep 13, 2009 9:39 am

Is there any home monitoring equipment that one could buy to monitor leg twitching/movements during sleep?

I'd really like to be be able to monitor to see how well my various RLS control strategies are working while I'm asleep.

Although my waking RLS symptoms are rarely present now (after a lot of DIY strategies to reduce leg pain, etc.), on my last sleep test there was still a significant amount of leg twitching while asleep. I think that might have been due to taking a tiny dose of benadryl the night of the test to help me sleep, but it would be nice to be sure.

dogeyed · Post by **dogeyed** » Sun Sep 13, 2009 12:09 pm

Well, what I CAN tell you is benadryl will indeed fire up your restless legs.

runkrun · Post by **runkrun** » Sun Sep 13, 2009 1:04 pm

Gracie99, Is your leg twitching waking you during the night? Are you thrashing about? I don't know of anything that monitors this, except another sleep study. I also have PLMD. The thrashing was waking me, so my physician prescribed Xanax @ night. This let me sleep through all the movement except if I get myself contorted in a position that is painful, then I wake up. Hope this is helpful.

gracie99 · Post by **gracie99** » Sun Sep 13, 2009 10:40 pm

Runkun,

Thanks for the response.

For years I had a lot of waking RLS and PLMD, so I knew I had it and expected that went on in my sleep too.

However after reducing my RLS/PLMD a lot, I'm now RARELY AWARE OF IT WHILE AWAKE. But apparently, given the sleep test result, it seems it is still occurring at least some of the time during sleep.

So the BIG CONCERN for me now is sleep quality, making sure that my sleep is not disturbed -- without my knowing it -- by some residual RLS/PLMD problem that is causing microarousals.

Given that I rarely am aware of RLS anymore, that means I need some way of monitoring (no, I don't have bed partner who can observe).

If I had some way of monitoring, I could learn to be much more effective at controlling the problem.

Obviously frequent sleep tests in labs is not the answer: They cost a lot of money, and my insurance would probably not spring for dozens of them for me to work on what the right combination of things are for me to control any residual sleep-time RLS.

[I'm fascinated that so few people on this discussion board seem concerned about the BIGGEST aspect of this problem: Poor sleep. It's all about getting through the day in comfort? Even when my RLS raged most of every day and precluded sleep, my biggest concern was poor sleep after I managed to get to sleep.]

Post by **ViewsAskew** » Mon Sep 14, 2009 12:02 am

gracie99, there are a couple of things you can buy to wear. The best is the Actigraph or Actiwatch (can't remember which it's called). It is a watch type instrument that you wear on you leg. It records the kicks. Dr Rye, one of the RLS specialists, never does a follow-up sleep study, but rather sends his patients home with one of these for a week. Then he can see what the pattern is on medication and if it's working.

They are expensive (used, I think around $500), but MUCH less than a sleep study. If insurance would pay for it, it would be totally worth it to the insurance company. Amazing how they can't see those kind of savings and would deny you the coverage but would let you have the $3K sleep study...

gracie99 · Post by **gracie99** » Mon Sep 14, 2009 12:45 am

Thanks, Anne!

I loaded my Medical Expense Reimbursement Plan account this year, so I might have money left over for something like that at the end of the year.

Or I might be able to persuade my sleep dentist to buy one to loan to his patients to use when they test their sleep breathing at home with equipment he loans.

SquirmingSusan · Post by **SquirmingSusan** » Mon Sep 14, 2009 2:26 am

The Sleeptracker watch is cheaper, but I don't know how useful the data would be in tracking PLMD. But it does keep track of "almost awake" moments for 12 hours. I have one, but have only used the alarm function, and haven't plugged it into my computer yet to track my sleep patterns. I've had it for about 6 months, and I guess I'm just too tired to do that. :roll:

Post by **ViewsAskew** » Mon Sep 14, 2009 2:56 am

I definitely think ALL sleep doctors should keep some of these watches so that they can give them to patients every year for an annual checkup, so to speak. I keep threatening to buy one, but now they came out with a new model and I want it, but the other one is less expensive. So I'm stuck between wanting to drive the Cadillac but wanting to pay for the Hyundai.

gracie99 · Post by **gracie99** » Mon Sep 14, 2009 3:57 am

Think one could make a pretty good case for getting such equipment covered by insurance as durable medical equipment. I'm going to ask for a letter of medical necessity and give it a try.

Would require a letter of medical necessity from one's doctor, but I think most might be willing to provide that.

What's the best piece of home monitoring equipment out there?

My insurance should reimburse me for at least 70%, 80% for in-network, and I'm willing to pay a few hundred out-of-pocket, especially as I can use pre-tax medical expense reimbursement account for that.

Post by **ViewsAskew** » Mon Sep 14, 2009 5:04 am

The Actiwatch/Actigraph is the one that the RLS doctors use. The only other one, which Susan mentioned, doesn't do nearly as much. I'd get the first one - not a hard decision at all. Now, as to which model you get? Tougher choice. Dr Rye is at Emory; he gives of his time freely to the RLS Foundation (he has RLS) so he might be willing to take a phone call from you to ask him which he recommends.

SquirmingSusan · Post by **SquirmingSusan** » Mon Sep 14, 2009 7:09 am

The Actiwatch and Actigraph look like they are 2 entirely different systems. Here's the link to the latter: http://www.theactigraph.com/index.php?page=shop.product_details&flypage=flypage.tpl&product_id=5&category_id=3&option=com_virtuemart&Itemid=87 I can't really figure out just what the Actigraph sleep tracking system does... At least it isn't nearly as pricey as the Actiwatch.

gracie99 · Post by **gracie99** » Mon Sep 14, 2009 7:30 am

I recall reading about some research into delayed sleep phase syndrome using the Actiwatch.

Link to the actisleep system, a new actigraph product, which seems similar to the Actiwatch:
http://www.actisleep.com/

Post by **ViewsAskew** » Mon Sep 14, 2009 6:12 pm

At least I had the right company, lol.

Dr Rye would be the expert here. I'd put in on my to do list to call him, but my to do list is just tooooooo full. If I remember and have time, I'll ask him.
But, if someone gets to it before me, all the better as it could take me a several weeks to get to it.

mompaisley · Post by **mompaisley** » Mon Jan 04, 2010 11:07 pm

I bought a Zeo. It monitors your sleep in a very basic way - not at all as deeply as a sleep study - but it gives you some information as to the amount and quality of your sleep.
This was super helpful to me. I have RLS (diagnosed at Mayo AZ in Dec 09), but did not have any idea how it was affecting my sleep. I thought I was sleeping - HA! I knew that I tossed and turned all night (I call it rotisserie sleeping) but apparently I am rarely actually asleep.
So sorry for those of you would love to actually be horizontal - I am hoping to avoid that (silly me!)
The Zeo is helping me get a realistic idea of what is working and what isn't. Right now I am just doing non-drug treatments. Zeo has a program which lets you compare your sleep with the various things you try so you can know what is helping and what isn't.

Restless Legs Syndrome (RLS) Discussion Board

home monitoring of RLS?

home monitoring of RLS?

home monitoring equipment for RLS?

sleep monitoring equipment for RLS

home RLS sleep monitoring equipment

sleep monitoring devices