Restless Legs Syndrome (RLS) Discussion Board

Hi Ann,
I so agree with you about docs not knowing much about PLMD...if anyone out there knows about some good reading material about it, that would be awesome!

Now that I'm back on the Oxycodone ER, I know I'll sleep so well, but like I said, my husband says I still move waaaay too much in my sleep. So, I will most likely go back to the sleep clinic to see how they can help. I'm not sure if there are any negative reactions to taking an opiod with Neurotin. We'll see...

Take care and sleep well!
Jen

Jen, there are a few articles that I linked to - in the New to RLS sticky on managing RLS. Hopefully the links still work as I haven't checked them out in awhile.

Thanks, Ann! I've been reading, reading, reading! I tell ya...I loved it when I spoke with my neuro today because I was able to site many references from this website so that he didn't think I wasn't doing my research!
Well, off to bed.
Take care,
Jen

I'm beginning to wonder if sleep specialists are even the right people to see for PLMDs and RLS... the few that I've seen said that PLMDs were "normal". Honestly, I don't know any other condition where we have to shop so much for people who "get" what we have. I'm over generalizing but to me it seems like who you see really correlates with what meds you get. Neurologists are wedded to DAs and neurontin, pain specialists love all the antiepileptics and sleep clinics seem to love benzos like klonopin or nothing at all. (Gee--- thanks for the CPAP, doctor, now I have a loud machine on top of untreated RLS).

Josh,
You are so right! My daughter is always asking me "Who are you calling now?" or "When are you going to get off the computer?" because I'm always having to either do research or find a doctor for whatever ailment (sp?) it may be!

I did sleep well last night, so at least that issue is taken care of! Too bad it had to be a horrific experience to get to a good night's sleep.

Take care,
Jen

LOL Josh, you said it. I have an appointment with a new sleep clinic in a few weeks, and I sure hope that they listen to me, and don't just try to give me a CPAP machine and some Klonopin.

What's weird though is that Ativan does wonders for my PLMs - I tried to not take it last night, and I was drifting off to sleep and the PLMs just started to go nuts. So I took the Ativan and they stopped.

Now, there is no doctor on the planet who is going to prescribe Ativan for sleep! But I'm hoping I can get some other sleep benzo besides Klonopin. That stuff only helped with sleep the next day.

I went to my primary care doctor this morning and he said that no doctor at that clinic who will prescribe benzos at all for any purpose other than acute emotional trauma, because they're all afraid of losing their licenses. Wimps. But I really like this doc otherwise, sigh.

We did discuss some other options, and he's writing me a letter of medical necessity for the Alpha Stim, so that will be good. And we decided to give Baclofen a try since it's the only muscle relaxant that Dr. B thinks is good for RLS. With any luck that will help the PLMs, knock me out at night, and not have a hangover the next day.

Is that too much to ask for?

Susan- Did Dr. B speculate why baclofen was the better option in terms of muscle relaxants? I'm curious...

Hi Susan,
Wow, you have a lot of things in your post I'm not quite sure I'm familiar with...OK, maybe just one--or two. What kind of drug is Ativan? Since the Oxycodone ER doesn't stop my PLMD (weird, I know), is it a safe drug do you think to take with it?

Not to put a damper on anything, but I tried Baclofen (it's a muscle relaxer especially for those with MS), and it didn't do a darn thing...more ironically, since I have MS, you'd think it would have worked.

Oh, and what are benzos? I'm sure I'd know what they are after an explanation.

Keep trudging on!
Take care,
Jen

FidgetBoy wrote:Susan- Did Dr. B speculate why baclofen was the better option in terms of muscle relaxants? I'm curious...

Apparently it's one muscle relaxant that doesn't aggravate RLS and sometimes helps with PLMD. Here's a quote from his website, this dates back to 1997, so it's a bit old:

PLMD is a much more common condition. RLS occurs in about 5% of the population while PLMD may be found in 30% of people over age 50 (and 44% of people over age 65 !). Most of the people with PLMD do not have problems with their limb movements. In sleep studies, these movements often do not even cause arousals from sleep.

To answer your other question, opiates may improve PLMD but generally have a more marked effect on RLS. Although patients have reported significant improvement of their PLMD with opiates, it generally takes a higher dose, and is inconsistent from patient to patient.

Other than the sedatives and the Parkinsonian medication, only Baclofen has demonstrated some benefit for PLMD.

Actually, it's the PLMs that are driving me nuts. They get really bad about the time I'm drifting off to sleep. So we'll see if it helps. It seems like I've read about another muscle relaxant that has been approved for RLS, but I'll be darned if I can find the reference to it.

Jen, "benzos' is short for benzodiazepines, a class of meds that includes Valium, Ativan, Klonipin, etc. There is some concern that both benzos and opioids can suppress breathing, but I've had them both prescribed at the same time. But be sure and check with the doctor. The breathing depression is usually the worst when you've just started to take the opioids, and then that side effect lessens a bit.

But... I am not a doctor...

It's not at all surprising that the Oxy doesn't help with the PLMs. Usually the opioids don't do much for that problem.

Bummer that the baclofen didn't work for you. I know some people with MS just love that drug.

I hope it helps with my PLMs, or at least knocks me out.

Hi Susan,
Thanks for the info. I am wondering what would happen if I take the Baclofen before bed (I usually take the Oxy around 5:30pm). I've heard of the breathing issues with benzos and opiods, hence why I'm not going to take the Valium for anxiety anymore. Heard anything about Baclofen and opiods? I'll have to ask my doc (ugh...) and see...maybe it'll be the answer!
Take care and sleep well,
Jen

Greetings- I am new to the forum. I've had RLS for all of my 45 years and have gone through the same kinds of frustrations with various species of doctor as I have not only RLS but Celiac Disease also.

On one particular visit to a not so empathetic neuro and after not sleeping for 10 days and contemplating suicide, I asked the doctor to let come to his house so I could drag a stiff bristled cleaning brush up and down his legs and feet for about 10 hours while he tried to sleep. That changed his attitude regarding whether or not I was serious about the RLS and the living hell it put me through.

I'm on Mirapex now after first trying klonopin (horrible horrible side effects) and then Requip. I can for the first time in my life actually sleep through the night.

Best of luck, and don't ever give up.

Hi Ripcord, glad you're sleeping! LOL, a stiff cleaning brush on the neuro's legs.

Jen, the baclofen experiment was a failure, but then I only took it for 2 nights. Talk about breathing problems!!! I was barely breathing at all. Scary. And it made me so sleepy that I couldn't keep my eyes open, but my mind was still racing away. And then I had an out of body experience driving my kids somewhere the next day, and decided that those are probably not the drugs for me.

I was up half the night mumbling and crying to myself "Make it stop! Make it stop! Make it stop!" What I'm having is NOT PLMs. Until further notice I'm referring to them as myoclonic jerks. Neurologists take myoclonic jerks seriously and treat them. Usually with clonazepam, but there are other meds.

I have to think that the jerks are a reaction to a drug I'm taking. I hope it isn't the methadone, but it could be. They do seem to correspond to the time it's active in my system. It could be Effexor, too, but I can't stop that one.

Ugh.

Hi Ripcord and welcome to ths group. Good for you speaking up to your dr.. It is sad that you have to go that extreme but you have to do whatever to get their attention and it sure seems like you got his attention.

I am glad that you finally found relief for your rls and hope that it continues.

Please keep us posted on how you are doing.

SquirmingSusan wrote:And it made me so sleepy that I couldn't keep my eyes open, but my mind was still racing away. And then I had an out of body experience driving my kids somewhere the next day, and decided that those are probably not the drugs for me. :

Susan, oh, my, can I agree with that! Mirapex did that do me the first few nights. I didn't think I'd ever get used to it. In a week or so, it was gone. . .replaced by augmentation

SquirmingSusan wrote:I have to think that the jerks are a reaction to a drug I'm taking. I hope it isn't the methadone, but it could be. Ugh.

DH SWEARS that I have much, much worse hypnic jerks since switching to the methadone. . .and I know he's right because I can feel them. Last night as I was falling asleep and had that weird falling sensation in my brain, my whole body jerked as if I were a puppet. Sooooo, seems that this could be related. I wonder if Dr B has any info on it?