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Posted: Sun Feb 14, 2010 11:58 pm
by SquirmingSusan
Zach wrote:Lunesta / Ambien are hypnotics though, they shouldn't act as a CNS depressant ??

It doesn't seem like they should be CNS depressants, but the local sleep doctors wouldn't give me any with my "untreated apnea." (Don't get me started on the local clowns.) So I think they do suppress breathing a bit, as do antihistamines like Unisom or Benadryl (which isn't usually a huge issue for those of us with RLS, because they it (Benadryl) makes our RLS go nuts).

But they do act on the benzo and GABA receptors somehow.

It's always best to check with a doctor when mixing drugs that make one sleepy. Especially for those of us who are already on opioids.

Posted: Mon Feb 15, 2010 12:32 am
by Aiken
The official documentation for Ambien says that it does have CNS-depressant effects: ... ection-6.5

Posted: Mon Feb 15, 2010 1:23 am
by badnights
:( This is so tiring. I have to -HAVE to- eliminate even the itty bit of pramipexole (Mirapex) I'm using because I have absolutley no motivation to do anything all day, I just want to sleep. (And can't, because the malevolence in my bones wakes up when I lie down.) Then I perk right up at night. I can't live like this, I need to be able to go back to work when my sick leave runs out. So I am cutting out the pramipexole tonight. Again. ha.

So how do I sleep, once the oxycodone kills the RLS and wakes me up? I don't like the idea of taking zopiclone every night. Polar Bear, do you take it every night? Zach, how much methadone are you on, and is that the only drug you use for the RLS?

I guess I have to add this to the ever-changing list of things to talk to some physician about - but who ? The vanishing neurologist? My helpless PCP? The guys in Calgary who don't answer their phone let alone email but are supposed to supervise a CPAP trial for me? Sorry, venting again. I want to be normal again. lol If I ever learn how to live with this (accept mediocrity?), I'm going to write a book. And if I decide not to live with it, I'll write a book first. It'll be called My Suicide Note. Don't steal the title, now; I know it's a good one. Trashy comedy if I publish but remain alive. Tragic and momentous if I off myself afterward. jk.

Posted: Mon Feb 15, 2010 11:07 am
by cornelia
Bethf, I take OxyContin at night and it makes me alert too. But, now I take it with Neurontin (900 mg in my case) and as the anticonvulsant makes me sleepy I find it a good combination. Maybe you could give it a try?


Posted: Mon Feb 15, 2010 11:51 am
by badnights
ah , nice suggestion and thanks for it. Neuontin unfortunately is a suicide drug for me. It causes suicidal depression in a small percentage of people. I was on it for 10 months. Alone, it dulled the RLS but didn't permit sleep. In combination with codeine it was better, though not totally effective. I'm glad it works for you, wish I could have it back in some ways, nioghts were sort of predicatble at least.

what's keeping you up tonight (assuming you're within a few time zones of me)?

Posted: Mon Feb 15, 2010 2:50 pm
by SquirmingSusan
Beth, vent away. We all know what you're going through, and somehow we all survived it for a long time as well. You'll be one of the 95% who gets over 90% better. But for now it's serious venting time.

Has your "helpless" local doctor looked at the Mayo Clinic algorithm at all? She's probably not as helpless as she thinks. You just need to convince her of her power. If she can (and will) prescribe narcotics you're good to go. Ask her if you can try something else besides percocet. Methadone is good because it doesn't seem to cause as much problems with alertness, but there are others. A lot of doctors are scared to prescribe it, though, because it causes a lot of respiratory depression at first. So an experienced doctor will increase the dose very slowly. (That drove me crazy at first.) It causes wicked constipation, though, but it's manageable when you know to manage it. Doses of methadone vary widely from person to person; you usually work up slowly to a dose that works consistently and stay there.

Ask your local doctor to help you. If she says she doesn't know enough, give her "the algorithm" of the book "The Clinical Management of RLS." (Or tell her to buy it herself, sheesh, she's a doctor and can afford it!) She can call or email Dr. Buchfuhrer too - he works with doctors all over the world. All she needs is some knowledge and that prescription pad...

It's not so bad to take zopiclone every night if it works for you. The Lunesta version is approved for long term use. I've been taking zolpidem (Ambien) every night for months and the effect doesn't seem to wear off (which happened to me with Lunesta), but we're all different. There are also short-acting benzos like Ativan or Xanax, or other sleeping pill benzos like Restoril and others.

You are far from exhausting the options, even though you're exhausted yourself. It's better (right?) not having the RLS all the time? Keep plugging away at it.

Posted: Mon Feb 15, 2010 3:13 pm
by Polar Bear
Beth, yes I take the zopiclone every night. Very recently I have started to split the pill with a pill cutter, take half around midnight, and the other half at around 4 or 5am. These timings are ok for me cos I don't need to get up very early to prepare for work.

And with regard to your PCP, my GP felt he knew absolutely nothing about rls, he referred me to a neurologist who also knew nothing, both of them agreed that GP would work off the Mayo Clinic Algorithm. I have done the research when necessary and printed off stuff and taken it to my GP, and this includes email responses from Dr B.

When I asked to change from codeine to tramadol (supplementing my ropinerole) my doc phoned me and we both sat at our relevant computers while I guided him to the medications section on the Southern California site (Dr B).

Good luck


Posted: Mon Feb 15, 2010 4:40 pm
by doety
After my last hip replacement, I was looking forward to the bottle of Vicodin I knew they'd give me. In the runup to the operation, when I was in a lot of pain, I could take one and go through that wonderful window that read "no pain, euphoria and sleep." But after the operation, I would take it and I stayed up all night with RLS. My caretaker would put me to bed, go to her room and then from 10 - 6 I walked using my walker. She would see me in the morning and want to know who the hell I had a fight with. It was miserable. I still don't understand it, except the main theme on this forum (I think) is that we all react differently to every medication, in every dosage, etc.
I just tried to look at that time as intense physical therapy. Maybe it helped me get well quicker?
Sure hope you can find something that gives you relief.

Posted: Mon Feb 15, 2010 7:48 pm
by badnights
I wish some of them (physicians) had time to read some of this forum. Or just time to listen. But on the other hand, isn't it wonderful that there *are* medications, and there are people who decide to become physicians, and magical things can be done with surgery (hips, knees, etc)? Why am I so cheerful? I didn't sleep til 7:30 AM and then only fitfully for 3 hr. :? I attribute it to the lack of pramipexole in my system. Now I have to go through a mini-withdrawal from it, and I'll be fine in a few nights, especially if I take zopiclone every night.

Has your "helpless" local doctor looked at the Mayo Clinic algorithm at all? She's probably not as helpless as she thinks. You just need to convince her of her power.
I like that; convince her of her power. She gave me permission to double the Percocet and has said she will fill a new prescription for it when I run out (in 3 days), so she is learning. I gave her a copy of the Mayo algorithm already, but I don't know if she looked at it. I have a copy of the Clinical Mgmt book all ready to give her when she's ready for it, too. I'm thinking "when" now, not "if" - I can convince her of her power :lol:

Posted: Mon Feb 15, 2010 8:05 pm
by ViewsAskew
I'm thinking "when" now, not "if" - I can convince her of her power :lol:


Posted: Tue Feb 16, 2010 3:21 pm
by Neco

Methadone is the only drug I am taking right now. I take a base dose of 15mg (5mg x 3 ) and 4 days out of the week, I have the luxury of taking another pill to get me to 20mg if I need it.

It works out pretty well, but even Methadone isn't perfect, and isn't for everyone. It seems quite a few here who have been on it, had to stop taking it mostly because it made them tired to the point where they had to take a nap in the middle of the day, etc.

Sometimes I take naps in the middle of the day too, but I also get up at 4 or 5am most days for work.

Posted: Tue Feb 16, 2010 10:07 pm
by SquirmingSusan
ViewsAskew wrote:
I'm thinking "when" now, not "if" - I can convince her of her power :lol:


Yeah, what Ann said!

Posted: Tue Feb 16, 2010 11:56 pm
by ViewsAskew
bethf wrote:I wish some of them (physicians) had time to read some of this forum. Or just time to listen.

A few years ago I created a letter to send to local physicians in my area that might run across RLS (it's posted in an old, old thread somewhere). I encouraged them to come here and read about patients' experiences with RLS for them to get a better perspective of what our lives are like.

Since Chicago is huge, I just sent it to a small cross-section of doctors I found that said they were interested in treating RLS. To my knowledge, none of them took me up on the offer :? .

I still believe that we can have a huge role to play in outreach. First, every body who reads this forum should be a member of the RLS Foundation. If you can't afford a full membership (and believe me, I know how tight money can be), skip something that you normally indulge in, save your change, or do something to give them even $5 or $10.

Second, every physician we meet is a potential convert. It's all in how we manage it. I'm not saying it's easy because our first agenda is getting our own needs met and when we're tired, depressed, etc, we're often not at our best at advocating for ourselves, let along an RLS-awareness agenda. But, I know that I'm also driven by making sure the next person doesn't go through what I went (and continue to go) through. Sharing articles with our doctors, making them a recipient of an RLS membership, buying used copies of the most important RLS books regarding treatment and donating them to our doctors, buying RLS Foundation pamphlets and sending them to doctor's offices to put in the waiting room, or donating the RLS Foundation Newsletter are all things we can do.

Third, we can find others locally and start a support group. I'm surprised at how few we have. As a support group leader, we have the ability to form partnerships with local physicians, helping educate them and then having them work with the people in the support group. Win win all around.

Fourth, telling others - coworkers, bosses, friends, anyone - about what it's like for us, how it affects us. Out of need this last year, I've had to come out of the closet with many colleagues and even some close clients. It's been very hard but it's been worth it. I had (and have) to walk a fine line; I can't be seen as someone who can't do her job well, yet I need them to know that I have limitations that anyone with a chronic health issue might have. It's been easiest to do with people related to my volunteer capacities and hardest with colleagues and clients. Interestingly, the new consulting firm I've started consists of five people, all with some under-the-radar disability or chronic health issue that prevents us from working as other people do. It's allowed us to find a way to work together to be successful and still take care of ourselves.

I didn't mean to go on this way...and I wasn't trying to hijack the thread. My apologies...

Posted: Mon Apr 05, 2010 4:33 am
by badnights
I thought the hydromorph contin didn't keep me awake, but maybe it does; I seem to have an alert period that begins around midnight. I take the meds around 10 or 11, so it probably is keeping me awake. Or I'm all backwards circadian-wise.

My big problem right now is that I've been nauseous off and on for the last 4 days. Not worth making a new thread for. And I love Ann's comments, last post. Everyone should read them.

Happy Easter.