I registered on this site in hopes of finding some help for my husband. He suffers with severe refractory RLS as a result of Ropinirole augmentation. We finally found our way to a specialist at a teaching hospital who has provided guidance to our primary care physician, and since early 2023 his RLS has been managed by taking 10 mg hydrocodone in the early evening. Our concern is the insomnia that seems to have developed as a result of the hydrocodone, he's not had a good night for months now, and becoming more exhausted by the day. He sees a sleep specialist for mild sleep apnea, and she's prescribed Ambien, Ambien ER, Quviviq, Sonata, Lunesta, none of it helps much at all. We'd appreciate any experiences you all might share along with any suggestions you all might offer. Thank you.
Hydrocodone insomnia?: I registered on... - Restless Legs Syn...
Hydrocodone insomnia?
I'm surprised the lunesta didn't work. There are 3 sizes - 1, 2, and 3 mg. I take it for something else and was originally prescribed the 1 mg which didn't help.
A small dose of pregabalin has been suggested but I didn't find that helpful, although you could try. Another suggestion is trazodone although again I doubt it is as effective as 3 mg of Lunesta. Then there is clonazepam, but it has a long half life of 40 mg so can leave him sleepy the next day.
Thanks, Sue. The sleep specialist increased the Lunesta to 3 mg at this last refill and it hasn't seemed to help much at all. The Hydrocodone seems to hype him up. He can be miserably exhausted and barely able to hold his head up but within an hour of taking the Hydrocodone he says he feels perfectly normal. It doesn't make him hyper, but he says it's as if the sleepiness and exhaustion disappears.
Possibly try to take it earlier say 4 hours before bed and then add the Lunesta if you have any left at night.
Yes, he takes the Hydrocodone between 5:00 and 5:30 pm, and then the Lunesta 9:30-10:00 pm.
Darn - I'm out of ideas!
We appreciate any and all input, so thank you very much and please chime in if another thought occurs to you.
Taking hydrocodone in the evening, and not again in the morning, will lead to withdrawals during the day-- which will cause his tiredness etc.
He should ask for 5mg to take in the morning , and se if that helps.
Thank you, Madlegs1. We hesitate to ask for more Hydrocodone after the difficulty obtaining it it the first place, but that may be what it comes to. We wonder if the Hydrocodone is disrupting his sleep patterns. A recent sleep study showed little time spent in non-Rem sleep. He says he feels he's dreaming constantly but never completely asleep.
Has he stopped Ropinirole completely?Assuming he has stopped Ropinirole and his RLS is controlled by hydrocodone- he could try to control the insomnia with a small dose of pregabalin (say 100mg) or medical cannabis.
Yes, he's been off the Ropinirole for a few years now. We're in the USA, and medical cannabis hasn't come about yet here in KY. Hemp gummies helped for a while, but they've become less effective and he seems to notice a great deal of anxiety the following day. We've never discussed pregabalin, we could ask about that at next appointment.
That can be a catch22 of the use of opioids. They are usually highly effective for RLS, but some people experience opioid-induced insomnia.
Yet another suggestion:
Would it be a possibility to discuss trialling different kinds of opioids, to see whether the other types do not give your husband insomnia? Methadone (around 10mg) and buprenorphine (around 0.5mg) both have a long half life and seem most effective for RLS in the long run. Buprenorphine is supposed to have the lowest incidence of side effects due to its slightly different mode of action compared to other opioids.
I hope you find a solution.
Thank you, LotteM. We've asked tentatively about a trial of other opioids but so far haven't gotten anywhere. We will see how it goes at our upcoming appointment. I've been reading about Buprenorphine, from what I gather it may be impossible to obtain without a substance abuse diagnosis. We're in a rural area, it's been up to us to do the research for the most part. Thank you again.
A common side effect of Buprenorphine (Bupr) is insomnia. I had terrible insomnia from Bupr for years and always blamed it on something else. Once I discovered the research on Bupr and why it causes insomnia I changed my dosing schedule to earlier in the day. But that too was a problem due to Bupr's variable half life. Even though I currently take 6 mg of Bupr per day, if I take it in the evening then I'm wide awake all night. And if I take it early in the day, I can't get through the night without RLS symptoms returning around 0400. So I take it midday and get about 5 hours of sleep at night and that's the best I can get from 6 mg of Bupr. So, if you work hard to get Bupr, you might also get worse insomnia. However, it really knocks out the Bupr symptoms and I'd rather lose some sleep than have severe RLS symptoms again.
A common side effect of Buprenorphine (Bupr) is insomnia. I had terrible insomnia from Bupr for years and always blamed it on something else. Once I discovered the research on Bupr and why it causes insomnia I changed my dosing schedule to earlier in the day. But that too was a problem due to Bupr's variable half life. Even though I currently take 6 mg of Bupr per day, if I take it in the evening then I'm wide awake all night. And if I take it early in the day, I can't get though the night without RLS symptoms returning around 0400. So I take it midday and get about 5 hours of sleep at night and that's the best I can get from 6 mg of Bupr.
The thing is that we all react differently to medicines. For example, many people get (temporary) nausea when they start with buprenorphine and very many get constipation on all types of opioids. I got neither. But it does affect my ability to concentrate yielding a kind of mental fatigue. Ergo: it is worth a try if you can get your doctor on board.
Oh wow, that's news to me. I did not have any nausea when I started Buprenorphine. Even as we titrated up to 12 mg/day. Thank goodness. But I always get constipation with opioids and a high protein diet. 
I'm very aware that we all react differently to meds and I've never understood exactly why that's true. Here's another example. My experience with opioids is opposite of yours; I have a heightened sense of awareness and I get very talkative. Also, I can get far more work of any kind done every day. Unfortunately, it's one major struggle to maintain a prescription. No doctor wants me to be on Buprenorphine or any opioid. My current doc is 77 and now has cancer so he's closing his practice and I need to find another provider to write my script. Already, 11 doctors have denied taking over the Bupr Rx. But it's a fight worth taking up because Bupr is the best medicine I've ever used for severe RLS.
I am 68 and have had RLS for about 15 years, its turned severe in last 6-12 months currently taking pramepaxole and gabapentin. 7:00pm 1 -.25mg pram. and 3- 100mg gab. 9:00pm 2- .25mg pram. And 3- 100mg gabapentin, fall asleep between 9-10pm. This dose keeps me asleep until about 4:00am and can most nights fall back to sleep here and there. Any change to dose or time seems to throw a wrench into entire evening and things get crazy. Also the over the counter melatonin product called midnight most nights helps to get back to sleep. Its pretty fast acting so doesn't give legs a chance to settle into their violent movements. Similar to your situation anything I take typically stops working after a period of time. The one thing that did work is tramadol 600mg a day. Was taking it all day and night. New PCP , old retired, will not prescribe opioids for RLS. Having a hard time finding anyone that will. Good luck.
Thank you, Beatown. Prior to hydrocodone he was tried on Gabapentin, he worked up to 1600 mg if I'm not mistaken, and it helped very little. It may be time to give it another try.
He probably didn't take it in divided doses of 600 mg as I mentioned. Doctors don't seem to know that or if he took it while on ropinirole it wouldn't help.
Welcome to the forum. You will find lots of help, support and understanding here.
You are augmenting on the pramipexole. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
The acceptable maximum of pramipexole is 0.5 mg. You are taking .75 mg or one and a half times the maximum. That means you need to come off it as it will only get worse.
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.
To come off pramipexole reduce by half of a .088 [.125] tablet)(ask for a prescription of these if needed) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not up-to-date on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.) Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Normally you would start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks and your symptoms have settled. After you are off pramipexole for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin or magnesium-rich foods, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%.
If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further on the best iron tablets to take and how to take it.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, , dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, low potassium. eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative. You mention coronary artery disease on your profile and many of the medicines can make RLS worse but there ARE safe substitutes I can give you.
By the way it would really help us to give you advice if you would indicate on your profile what country you live.
where do you live? I might be able to give you a name.
I live in Tucson AZ. I also had both knees totally replaced 2017&2018 my symptoms started 2019. Kidney transplant 6/2022 so have to watch dosing. Last 4 months GFr between 60-70 so kidney performing well.
Terriesfullbodyrls recommends Dr Joyce Lee Innanotti at Banner University Medical Center in Phoenix. She takes tramadol. She also does telehealth appointments. You can message Terriesfullbodyrls by clicking on the chat button to find out more.
I am also in the States and take Oxycodone for RLS. For sleep I take CBD 100mg from hemp and also a 25 mg Delta 9 THC gummy ( Indica not Sativa ) from hemp. I alternate with 50 mg of Delta 8 THC gummy. Because all from hemp they can be mail ordered unless you are in a State that restricts companies from mailing to you. I know you tried medical cannabis but it may not have had enough THC / CBD.
Thanks, BeachGolfer. Over the past year or so we've ordered Delta 8 and then Delta 9, they did seem to help a great deal early on, but then less so and he felt like they were causing increasing anxiety. He's currently using a CBN tincture, but not really sure it's a benefit.
Another suggestion is to come off hydrocodone slowly and try gabapentin or pregabalin to control his RLS. Mine is controlled by gabapentin as is others on this forum. And they make you sleepy at night. 😀
Pregabalin is more expensive than gabapentin in the US. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). [If he is over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).]
It will take 3 weeks to be fully effective. After that he should increase it by 100 mg (25 mg pregabalin) every couple of days until he finds the dose that works for him. He should take it 1 to 2 hours before bedtime. If he needs more than 600 mg, he should take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If he needs more than 1200 mg, he should take the extra 6 hours before bedtime. (He doesn't need to split the doses on pregabalin)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If he takes magnesium he shouldn't take it within 3 hours of taking gabapentin (It is OK for pregabalin) as it will interfere with the absorption of gabapentin and he shouldn't take calcium nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). Have him check out the Mayo Clinic Updated Algorithm on RLS which will tell him everything he wants to know including about its treatment and refer his doctor to it if needed at Https://mayoclinicproceedings.org/a...
Has he had his ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When he sees his doctor, he should ask for a full iron panel. He should stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. He should have his test in the morning before 9 am if possible. When he gets the results, he should ask for his ferritin and transferrin saturation (TSAT) numbers. He wants his ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and his transferrin saturation to be between 20% and 45%. If his ferritin is less than 100 or his transferrin saturation is not between 20% and 45% post back here and we can give him some advice.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, low potassium. eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
Thanks, Sue. He's scheduled for routine lab work next week, and we called this morning to make sure they're checking his iron. He has a doctor appointment Wednesday, we plan to take our notes and see what can be done about the medication. Watching Dr Berkowski's video about Buprenorphine we thought maybe we'd found the ticket, but from the reading it sounds like it's not so simple to prescribe. Thanks again.
Make sure it is a full iron panel. Just checking iron won't check the ferritin.
And buprenorphine causes insomnia too.
Thanks again to all of you for sharing your experience and offering suggestions. So much of this feels like jumping from the frying pan into the fire. Everyone here has been through it, too.
I use Buprenorphine and have this problem, it’s a horrible battle and I really need the sleep. I seem to have co-morbid insomnia anyway due to problems metabolising tryptophan/serotonin (and thus melatonin as well).
I take my Buprenorphine dose at least a couple of hours before sleeping. If you can get hold of cannabis then THC is what you need, not necessarily CBD. I have dreadful side effects from it, though. I only use it when desperate and only a small dose.
Usually I take a combination of a small of Tramadol (c. 25 mg) just before sleeping, along with diazepam and zopiclone, which I cut into small pieces and take if needed when I wake up during the night. I used to be prescribed quetiapine and have continued to use some although it aggravates the RLS, it doesn’t affect it very much, and I take a tiny morsel only, about 6.25-12,5 mg. I just haven’t found anything else.
I often take half a paracetamol because it increases serotonin a bit and can help me nod off. If I take too much, I have nightmares and other issues. I have also found that having something to eat can be helpful. I’ve recently nodded off quickly and slept quite deep after having some potato bread with fresh goats cheese and a slice of tomato (no mature cheeses due to RLS). It gives me indigestion but there would be a bit of tryptophan in there.
I’ve been using kelp and cod oil recently and feel as if these are helping somewhat. I don’t have thyroid disease so not sure about the kelp in the long term as you need to be careful with too much iodine, but it does also contain iron and magnesium, as well as a bit of tryptophan. I think the cod oil is helping with something. I have had fewer incidents of rapid heart beat which also keeps me awake. Not sure which one is helping, or if it’s both. I started taking the kelp at night due to its nutrient profile but you need to be aware of not using too much in case of causing thyroid problems.
The herbs I currently use are Ashwagandha (for joints) and Shisandra (for sleep).
Another thing is that I sleep the best in the afternoon, that’s quite common with RLS since dopamine is higher then. I’ve considered turning my whole sleep schedule around but it’s impractical and quite awful.
I appreciate this may not be helpful but hopefully there’s something to try anyway.
1. You are 100% free of dopamine agonist. Excellent.
2. Hydrocodone has a half life less than 4 hours. Methadone has a half life greater than 10 hours. Will your doctor consider methadone or buprenorphine therapy. Either med lasts much longer than hydrocodone.
3. I would blame the insomnia on the augmentation. My opinion is that severe augmentation rewires our brains to avoid sleep. It can take years to compensate.
4. The info printed by the RLS FOUNDATION reports that lunestra and Ambien aggravate RLS. I would expect zero relief of insomnia.
5. RLS is a night, sleep, rest diasese. All meds are taken at beginning of sleep schedule. Never break rls meds up into day/night dosing.
6. First step in treating RLS is to raise blood ferritin greater than 100ug/liter. All doctors versed in treating RLS will start by prescribing blood test.
May i ask names of your rls doctor (s)?
Dr. Arthur Walters at Vanderbilt. We are immensely grateful for him, he wrote the letter to our PCP advising the Hydrocodone.
I belong to the Restlesslegs Foundation and have never seen anything that says lunesta and ambien aggravates RLS nor have I ever seen that in my research which I do a ton of.
I suffered with both insomnis and RLS for years... insomnia much longer. I had tried Ambien, Alprazole and Diazepamn. The only thing that helped me sleep was Hydrocodone which of course I couldn't get unless it was after a surgery or kidneystones. I used to hoard the pills for use when I was desperate to sleep. Eventually a GP finally prescribed Ropinerole with Diazepam for my RLS which worked great until it augmented. Thereafter I tried Gabapentin and another drug I forget, neither of which helped. Imagine my excitement when new GP prescribed Hydrocodone for RLS. Two birds with one stone although I still had to take Diazepam. Well it was pure heavenly relief from both insomnia and RLS until I got sick and put on a regimen of Prednisone and antibiotics. Once done with those I find I now wake up within 2 - 4 hours. I'm so disappointed. Have not discussed with GP yet. I'm glad that Hydrocodone at least still helps get me to sleep and helps RLS but not getting anywhere near a good night's sleep. Tired and depressed.
Yep. My opioid induced insomnia powered through that entire list of medications you mentioned. It's a power unto It's own.
ziggypiggy, have you found anything that helps your sleep? Doug is scheduled for the iron panel Thursday morning, and we're scheduled to discuss meds with Dr Walters Thursday afternoon. I'll report back. Thanks again, everybody.
Doug had his blood drawn for the iron panel this morning, they said results would take a few days. This afternoon we had the telehealth appointment with Dr Walters at Vanderbilt. Best we could gather, Buprenorphine isn't a readily viable option due to the regulations in Kentucky and Tennessee, it requires a diagnosis of substance abuse or some such, and there doesn't seem to be room for much discussion. So forget that, for now at least. Dr Walters did think pregabalin was worth a try and wrote the prescription. Doug is to take 25 mg to start, in 4 days increase to 50 if needed, and on up to 75 mg. So we'll see. Thanks so much to all of you for offering your suggestions and sharing your experience, we were feeling lost and beginning to lose hope until we heard from the folks here. He'll take his first dose tonight and I'll let you know how it goes.
Insomnia due to RLS
insomnia
Insomnia on Gabapentin.
Buprenorphine insomnia
Insomnia 
