Restless Legs Syndrome (RLS) Discussion Board

PO = "per orum" or something like that. It means you take it by mouth instead of by injection or IV which is the other option on the chart.

just for clarification.

IV - Intravenous ("mainline", into a blood vein)
IM - Intramuscular (into muscle)
SQ - Subcutaneous (just beneath the skin)

P.O/PO - Per Orum (by mouth)

Q.D/QD - Once per day ("quaque die")

B.I.D/BID - Twice per day ("bis in die")

T.I.D/TID - Three times a day ("ter in die")

Q.I.D/QID - Four time a day ("quater in die")

q_h - (quaque) once per (h) hour.
Example: 1 P.O q12h would read "Take 1 dose by mouth every 12 hours"

Which is probably close to what your prescription might read as, depending on how long it is released over.

Another example, would be how my Methadone scripts are written.

"Methadone 5mg TID"

thank you both!

Good job Zach! I think you should sign up for nursing school! : )

Back to the thing about the arms getting RLS, this does happen to people with RLS, they'll get it in their arms, too. Also can get whole-body jerks sometimes. But with the meds you got, all this should settle down pretty good, let us know if you notice your RLS getting better. And tell us precisely the names of what you ARE taking right now, not just the opiate derivative meds you just got, but all of it... there are a few things that can make RLS worse, which I'm thinking about your arms.

And tell us precisely the names of what you ARE taking right now, not just the opiate derivative meds you just got, but all of it... there are a few things that can make RLS worse, which I'm thinking about your arms.

I stopped everything to start the hydromorph contin (sustained-release hydromorphone).

I *had* been taking oxycodone (in Percocet) for less than a month, along with tiny bits of the zombie drug (pramipexole/Mirapex) or the evil drug (ropinirole/Requip); and since that was usually insufficient, also some zopiclone, or if I was desperate, clonazepam aka zombie-2. I stopped all that for the HM.

I tried trazadone instead of sleeping pills, but it made my RLS crazy-worse, even though it's supposed to be RLS-friendly. Longer ago, when I was on the suicide drug (gabapentin/Neurontin) and codeine, I tried bupropion (Wellbutrin). I stopped because I had a bad night where I thought it was making me more suididal, but it also made my RLS worse, even though it's supposed to be RLS-friendly too.

Before I started any meds, a year and a half ago, I had moderately severe nightime RLS but almost never in my arms and never in the daytime. Now, if I am not taking the right meds (eg if I am on the Percocet regimen described above) I have RLS 24 hours a day, worse at night of course, and in my arms too. This seems to be the new me. I think that, somehow, being on meds caused the rapid progression, because it was not progressing that rapidly before. The first med I was on was ropinirole (Requip) for 3 months even though I started augmenting the first week. So that's the evil drug, for me. Then the zombie drug, another DA. I think the DAs are evil. Then the whole long ordeal on gabapentin, and the horrendous withdrawal - maybe something in our brains alters permanently after augmentation, withdrawal, or any worsening of RLS, so that the RLS stays worse than before.

I've been hesitant to write but I think this HM is going to work. I have only tried it 3 nights though. The first night I was scared of it so I only took 3 mg then after a couple hours of no effect, anohter 3, It was a bad night. Night 2 I took 9 right off the bat, as had been prescribed, still a bad night. But my daytime RLS was very mild. Last night I took 9 again, and wow did I sleep ohmygodd I felt great!! I feel a bit stoned all day tho, so maybe it's building up in me a bit and every now and then I will have to cut back the dose.

I have been having paralyzed nightmares lately, some of them I could have sworn my eyes were open but I was seeing nightmare things in my room (but I'm not sure my eyes were open), and I couldn't move. Twice right as I was falling asleep, and twice after I'd been sleeping almost an hour, all in the last 2 weeks (the last two in the last 3 nights). I think this happens when you're exhausted?

Also I have been woken up 3 times lately by a phone ringing but it was an auditory hallucination or something - it stopped as soon as I woke up. And my arms and legs will move sometimes when I do dream-things, which wakes me up. These also can be signs of exhaustion and are not necessarily some other sleep disorder?

I have been having paralyzed nightmares lately, some of them I could have sworn my eyes were open but I was seeing nightmare things in my room (but I'm not sure my eyes were open), and I couldn't move. Twice right as I was falling asleep, and twice after I'd been sleeping almost an hour, all in the last 2 weeks (the last two in the last 3 nights). I think this happens when you're exhausted?

I'm no expert on other sleep disorders. But this sounds like Night Terrors. I've had incidents like this in the past

Beth,

It sounds like hypnogogic hallucinations with sleep paralysis. Both of those are caused by REM sleep breaking into consciousness. In REM sleep our muscles are supposed to be paralyzed so we can't act out our dreams. So sometimes as we fall asleep or wake up, we can be stuck in REM sleep and be still paralyzed, and even see things from our dreams in the room around us. Those are two big symptoms of narcolepsy, but people without narcolepsy can have them as well. They're harmless but can be terrifying.

REM sleep disorder is when your body isn't paralyzed during REM sleep and you can act out your dreams. Some people with narcolepsy also have a bit of that; I know that I do. Sometimes I manage to yell at people in my sleep and yell myself awake.

I'm not sure which category sleep terrors fits into, but I think that those are more in the REM sleep disorder category - people can move and talk but are in dream sleep.

As with everything, being exhausted can make things worse. Hopefully as you get adjusted to the hydromorphone you will sleep better. That stoned feeling will likely wear off within a few days and hopefully you'll just feel relief!

If the hallucinations and paralysis continue, please talk to a sleep doctor about it.

The thing to remember also, with controlled release medications, is that you do not necesarrily get the full effect until an hour or two into your dose.

In general, the idea is to release a slow and steady, but consistent stream of the medication into your body. But it needs time to be digested and absorbed so you may see some lag time before you feel the full effects of your dose.

Try taking it an hour or two before you plan on sleeping, if you aren't already.. Also Try NOT to pile on additional doses. With controlled release medications this can be extremely dangerous if you overshoot your mark. Because as the additional doses become absorbed and start releasing, you are effectively doubling your dose for the first pill, and still increasing it for additional pills.

If you tolerance can not cope with that much in your system, you could end up in overdose and in the Hospital or worse. It sounds like the medication is starting to show benefits though.

The worsening could be your stopping your other medications and irritating your RLS, and the Hydromorphone simply needed some time to calm your body down. Also if you have recently stopped dopamine agonists, that too will greatly increase your RLS anywhere from a week to a month or so.

As long as you don't go over your prescribed 9mg dose (total) you should be relatively fine. Just have patience. I know how hard it can be when dealing with opiates and you just want to take a little more to get it a little faster. But don't think like that.

I hope the Hydromorphone works out for you - and remember to keep your daily dose and number of doses per day, as low as humanly possible without sacrificing relief. You will eventually have to go through dose escalations as your body becomes tolerant and the RLS starts to come back.

But if you are lucky this won't happen for quite some time, or may simply mean a small bump in your dose for a bad day here and there, until a permanent increase is required.

Thanks Bethf !!
I'm relieved to hear you are strictly on the new meds, and that by the third evening, you slept like a log! Hoooray! Yes, it is indeed divine, that first good night's sleep in a long, long time, always memorable for RLS people who have reached the end of their rope. I agree with the other posters that you have been unbelievably sleep-deprived, and that's why you had a couple wild nights. I remember first time I got the right meds, I fell asleep on the couch late afternoon, hallucinated all night with brief wake-ups, but I did sleep right on thru until early afternoon the next day. THAT's a lot of sleep. When I awoke, I realized just how beat up my poor body was, and how badly I needed to get a good night's sleep, including undisturbed deep sleep and REM sleep already mentioned. I honestly think the stuff you got now is all you need, and while RLS will occasionally sneak thru, like if you've had a really active day, you should be able to manage much better now wth your life activities.
GG

Three nights of good sleep! Tiny bits of RLS here and there, which is good because I don't want to develop tolerance too fast (or at all !). And no nightmares last night.

You're right Zach it takes about 1.5 hr to kick in; that may have been part of the problem the first couple nights; I was expecting it to work right away.

I think I'm actually going to become human again. Thank you Dr. Witt! I just have to get back into working all day, and figure out the drug timing so I can get up at a decent hour. I am a HAPPY ENDING not an ending. Big hugs to all of you.

I just love this place.

I'm so happy for you, Bethf. I echo what Ann said, "I just love this place."

BETTY/WV

There are echoes (sp??) everywhere.
I just love this place too .....

I am a HAPPY ENDING Very Happy Laughing not an ending. Big hugs to all of you.

What a great comment! Yeah, I love this place too.