Restless Legs Syndrome (RLS) Discussion Board

The ropinirole is doing nothing for me and I'm still having early morning - mid morning RLS. It quiets down mid day and then picks up again at 4:30ish. Quiets down again until 7-9 and then just stays.

My neuro increased the trazadone to 75 mg but without 1.0 clonazepam there's no sleep. The last two nights I've gotten 6 1/2-7 hours of sleep. Yay for that part. But I am going to ask if we can go up again on the trazadone so I can start tapering again. I started at 3mg in September and jumped all the way off at .125 in the Spring.

Evil drugs!

That is beautifully put Yankiwi and so accurate.

I am thinking of you Madmom - you are having a terrible time of it. I am more of a lurker than a poster and have found your posts very helpful. I really hope you are finding relief - it can seem so hopeless in the dark hours of the night with the ghastly crawlies viciously impeding sleep but there is a solution out there and you have such a strong will I am sure you will access it.

legsbestill (I love your user name!), thank you for your kind words. It really helps to have someone remind me that I am strong and hope is essential to resilience.

I am having a terrible time because, in addition to the RLS, the MS has decided to gift me with some new challenges. Apparently something is going on with my optic nerves - I've been cleaning my glasses 5-10 times a day because my vision has been getting progressively worse over the last month. Saw the eye doctor today and she's sending me off to the neuro-ophthalmologist. If it is the MS I just have to ride it out because I can't take steroids.

But, I'm just borrowing trouble so I'll not think on it. Last night was another no sleep night even with 75 mg trazadone, 1 mg clonazepam (I was that desperate), & 10 mg oxycodone. I really do think the ropinirole is making the RLS worse.

The good news is I have two docs and my physical therapist trying to find me a new neurologist and getting me an appointment with THE RLS neuro where I live.

And, I had an appointment with the oral surgeon who will be pulling two teeth next week and he has RLS! He's going to prescribe a higher and more frequent oxycodone dose for the teeth extraction pain and is willing to refill it as needed until I see an RLS doc (as long as I don't refill my back pain rx which is due for a refill the day before I get my teeth yanked and I can't take it during the day or every night.) So, good stuff.

I hope everyone's legs are still and quiet tonight.

I found that I needed 30mg of OxyContin in the evenings to make an appreciable impact on the rls. 30 mg completely quietened them - and felt very nice - but it did on occasions make me quite wakeful - I think it's called 'alerting'. It is unfortunate not to be able to sleep when rls symptoms are removed but it is a pleasant novelty to be able to lie in bed without jerking around!

I stopped taking oxycontin in 2014 but had been taking it along with oxycodone for breakthrough pain. Usually take 0-15mg (total) oxycodone a day for the pain. Oxycontin seems like a scarier drug to me for some reason.

What's worse, clonazepam or oxycodone?

After 0 sleep on Thursday night, I slept from a little after 10:30pm last night until about 9:30 this morning! I'm not nauseous, there's no RLS yet, and the dizziness is gone. (I'm pretty sleepy still - drug hangover or MS?) I think the ropinirole+trazadone+exhaustion worked.

(Yeah, I buried the lead - or lede if you think that's correct)

Stainless wrote: I think DAs change the disease, at least for me.

Me too. Ann too, and some others here would agree, and some RLS specialists have suggested it too.

legsbestill wrote:[oxycontin] did on occasions make me quite wakeful -

Me too, and others here .I use zopiclone for sleep, but I'm pretty sure I wouldn't need it if I was not taking an opioid. That's another thing I've had to convince my doctor of; she expects opioids to cause drowsiness, not alertness.