I know there is another post in here somewhere about this. The opiates I take for my refractory RLS are magic but they really keep me awake. I slept for an hour and a half tonight and I can’t function on that. I have clonazepam (up to 4 mgs) for sleeping but that doesn’t work all the time
It took me forever to fall asleep tonight and then my RLS broke through about an hour ago and woke me up. Been walking around eating peanut butter sandwiches.
I think I have generally got the leg thing licked at least 75-80 % of the time. The hydrocodone works super well unless I wake up after it’s worn off, like tonight. It just makes me alert and chatty instead of knocking me out
I am trying to find a way to let the hydrocodone do its thing with my legs early and have the Chatty Cathy wide awake stage pass before I take my clonazepam to go to sleep. Didn’t work. All that happened was that the hydrocodone wore off and my legs woke me up. I am trying another mg of clonazepam and hoping that that, the walking and stretching (I did some yoga) and the peanut butter let me go back to sleep.
I don’t mind lying awake at night feeling relaxed and vaguely sleepy, but I have a ton of writing work to do in tomorrow morning and I am no good when I am half brain dead.
Thanks for letting me vent. The cat listened for about two seconds and curled up and fell asleep. Show off!
Christine
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Dcb55
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I had exactly this problem when I was using OxyContin to treat my legs. I could lie awake - untroubled by rls and delightfully mellow - all night. It meant my days were useless.
I never really got on top of it. A number of posters on an US forum also record it. On that website, the consensus was to use a small dose of pregabalin and some medical marijuana taken as an edible (the soporific effects last much longer as an edible) was the only effective answer.
My sleep consultant was very unhappy with me on it - I think she was uncomfortable with opioids for rls generally. Then I had a sleep test and she discovered it was causing central sleep apnea. There was also the problem with the alerting that you describe. I embarked on a journey of enquiry/discovery to find a regime that worked reasonably well to cover the rls and yet allow a near normal existence in the daytime. I'm not entirely happy with what I ended up with because it involved adding back in a small dose of pramipexole (I had a traumatic withdrawal from pramipexole 2 years ago) but it works reasonably well. I now take: a small dose of lyrica (pregabalin) - currently 75mg but I am attempting to reduce this further - like you I really don't like this drug; 100mg dipyridamole (an anti-coagulant that has been found to have a positive impact on rls in a small study); 0.044mg pramipexole (I only take this 5 out of every 7 days hoping that the 2 day break, together with keeping my serum ferritin as high as I can with oral iron, will stave off tolerance and augmentation); 4mg ldn (this currently does not help the rls but I do feel much better during the daytime on it - I retain a fragment of hope that it will contribute to rls management ultimately as apparently it can take some months to reach full potential). I also take cannabis made up into an edible to help with sleep and I use kratom if I have breakthrough symptoms - particularly on the nights I am not taking pramipexole (neither is legal here but my rls has caused me to become very lawless).
Yep I've experienced the same problem. i did find that having a drug holiday from opiates (over a month) rebooted them and I could sleep again for a while (a number of months) but the same thing happened again. No easy solution. It's so hard when you have to work. take care.xx
Thanks. It’s a good thought, but I counted the days til I could get to a specialist who would prescribe opiates. Nothing else has turned off the craziness in my legs. I’m afraid to take a drug holiday — I’d rather lay awake with calm legs.
I think it’s a matter of getting the dose of sleep meds right without accidentally killing myself. I am not taking the full dose prescribed because benzodiazepines and opiates are a scary mix.
I take 1.6gm Gabapentin (which i’d like to reduce but am struggling) along with 50mg Tramadol. It isn’t enough and I reluctantly take 100mg occasionally to stop the RLS for a night or two. The 100mg gives me insomnia and I’m up in the night just the same as with RLS. I do convince myself that although I’m not asleep I am resting and all will be fine the next day! It makes quite a difference if I’m more relaxed about the insomnia. On a number of occasions my wife has woken and I’ve vented my wrath at the insomnia and then fallen fast asleep....
I take 75mg Pregabalin along with 20mg OxyContin early evening which has really helped me get some decent sleep now. I still do have the odd bad night here and there; but nothing like before.
Wow! I’m so excited to meet someone who experiences this and goes to him. I too live out of state but not very far at all. Did he do a sleep study on you?
No, he could diagnose the RLS from the description of my symptoms and my medical history. He’s the one who helped come up with the defining characteristics of the disease way back when. Did you see my response to you on your initial thread? Can you easily get to TN to refill a prescription?
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RLS-ROPINOLE
PLMD?
DON'T PASS ON THE PEANUT BUTTER
Worse night ever
Augmenting on everything
