Restless Legs Syndrome (RLS) Discussion Board

I was speaking with one of the Foundation Board members about medication side effects and I mentioned that I cannot take methadone at night. I have to take it at lunchtime because it causes a side effect that prevents me from being able to fall asleep for about eight or nine hours. If I try to take it at 9P, I will be awake until 6AM. And if I forget to take it on time and take it at 3P or 4P when I start to feel the early stages of withdrawal, I can pretty much forget about going to bed until midnight.

This is not the same thing as insomnia, being hyped up on something like meth, or even having to stay awake because my RLS is bothering my legs. I am simply as wide awake and as alert as I am during the rest of the day. For those without RLS, it is the feeling of waking up after a good night's sleep (I know, what is a good night's sleep? LOL)

I was bit surprised when this board member didn't seem to know what I was talking about because I thought that the "problem" was relatively common among RLS patients on opioids.

So, can any of the rest of you relate to this situation?

Rustsmith wrote: Mon Jan 06, 2025 3:18 am I was speaking with one of the Foundation Board members about medication side effects and I mentioned that I cannot take methadone at night. I have to take it at lunchtime because it causes a side effect that prevents me from being able to fall asleep for about eight or nine hours. If I try to take it at 9P, I will be awake until 6AM. And if I forget to take it on time and take it at 3P or 4P when I start to feel the early stages of withdrawal, I can pretty much forget about going to bed until midnight.

This is not the same thing as insomnia, being hyped up on something like meth, or even having to stay awake because my RLS is bothering my legs. I am simply as wide awake and as alert as I am during the rest of the day. For those without RLS, it is the feeling of waking up after a good night's sleep (I know, what is a good night's sleep? LOL)

I was bit surprised when this board member didn't seem to know what I was talking about because I thought that the "problem" was relatively common among RLS patients on opioids.

So, can any of the rest of you relate to this situation?

Steve, I've been taking Suboxone for about four months and I can't say that I've experienced alerting with this medication.

Rustsmith wrote: Mon Jan 06, 2025 3:18 am I was speaking with one of the Foundation Board members about medication side effects and I mentioned that I cannot take methadone at night. I have to take it at lunchtime because it causes a side effect that prevents me from being able to fall asleep for about eight or nine hours. If I try to take it at 9P, I will be awake until 6AM. And if I forget to take it on time and take it at 3P or 4P when I start to feel the early stages of withdrawal, I can pretty much forget about going to bed until midnight.

This is not the same thing as insomnia, being hyped up on something like meth, or even having to stay awake because my RLS is bothering my legs. I am simply as wide awake and as alert as I am during the rest of the day. For those without RLS, it is the feeling of waking up after a good night's sleep (I know, what is a good night's sleep? LOL)

I was bit surprised when this board member didn't seem to know what I was talking about because I thought that the "problem" was relatively common among RLS patients on opioids.

So, can any of the rest of you relate to this situation?

It takes me about 8 hours after I take it before I can sleep. I usually try for a midnight bedtime and take the methadone at 4 PM. I also have to take it all at once - both because of the alerting and because if I spread it out, I don't have enough coverage during the critical time of 11PM to 3 AM.

Thanks for accepting me into the membership, I registered onto the forum to seek help in dealing with this very issue. My husband has severe refractory RLS and has been taking Hydrocodone 10 mg between 5 and 6 pm for about 2 years. It manages his legs very well most nights, but has him on wide alert for the next 8-10 hours with no sleep at all. If he tries to take it much earlier he'll most often experience breakthrough symptoms in the hours after midnight. We've asked to try a different opioid but haven't managed to do so. Prior to the Hydrocodone he tried Tramadol but within a short time it lost benefit entirely. Doug has tried every medication for insomnia you can imagine, Ambien, Lunesta, Quviviq, Sonata, pregabalin, none of them have helped to any degree. We're in a rural area of KY, and whenever we've asked about methadone or Buprenorphine the doctors take on a bit of a horrified expression and reply something about regulations or some such and that's the end of it, subject closed. After reading here and seeking advice on Reddit and HealthUnlocked we'll be redoubling our efforts to try Buprenorphine. We so appreciate any advice and insights this group might offer. Thanks again. Sarah

The problem that he is experiencing is that the hydrocodone is wearing off after 4 to 8 hrs so if he takes it early enough for the alerting side effect to wear off, so does the benefit for treating his RLS. As for the sleep meds, doctors cannot seem to get it through their heads that the sleep meds do not work for RLS patients. I even had one of the RLS experts try to prescribe me belsomra, which did nothing for me.

When you speak with his doctor, you have to explain that he is experiencing an unacceptable side effect with hydrocodone that is causing insomnia and that he needs to try a different medication to find one that does not have an unacceptable side effect. Suggest buprenorphine and explain that you know that Suboxone is now a Schedule 3 medication that does not involve as many legal restrictions as hydrocodone. The doctor can even prescribe refills with Sch 3, which he cannot do with hydrocodone. That means less work for him since he doesn't have to call in refills every 30 days.

Thank you Steve, I'm making notes.

Sarah

Sarah, the critical wording when you discuss his hydrocodone side effects is "unacceptable side effects". That is wording that most doctors recognize and realize needs action. If you just say side effects, they think about things like constipation or nausea that are inconvenient but not major problems (at least not for the doctor).

The all around resistance to buprenorphine has truly stumped us, especially since it's Schedule III vs Hydrocodone's II. It makes no sense. We so very much appreciate the guidance, Steve. I don't know how people manage without the support from groups like this one. Thanks again.

Sarah

The all around resistance to buprenorph ... tumped us,

Up until a couple of years ago, there were a very large number of additional restrictions to buprenorphine, including a requirement that doctors attend an additional training series to get permission to prescribe it and that they only use it for addiction treatment. It was also Sch 2

Finally someone at the FDA and DEA woke up and realized that they have a very safe medication that could be used for applications other than addiction treatment and so they changed the schedule and removed the added requirement on doctor training. Unfortunately, doctors are frequently too busy too find out about changes like this unless a pharmaceutical sales person tells them about it. Therefore, they can continue for years totally misunderstanding what they are able to do to help their patients.

That explains it. Thanks, Steve.

Sarah

I am thrilled to be back with an update, we finally obtained Suboxone (Buprenorphine/Naloxone) locally through a g.p. who also sees patients at an addiction treatment center. After hearing a full history and reviewing the research articles she was agreeable to prescribing the Suboxone. It's early days yet, but so far Suboxone .5 mg has been near miraculous for Doug. He reports no alerting effect whatsoever, and taking Suboxone along with 50 mg of pregabalin he's sleeping better and feeling better than he has in months. We will see how this goes, but for now he's enjoying a remarkable improvement. Thank you so very much for the support and guidance.
Sarah

Thanks for the update. That is wonderful news, especially since you are able to get it through a GP. It is so much easier when a doctor/PA/nurse has previously worked in an addiction center and understands that opioids can be used responsibly.

jitters62 wrote: Sat Feb 08, 2025 1:31 pm I am thrilled to be back with an update, we finally obtained Suboxone (Buprenorphine/Naloxone) locally through a g.p. who also sees patients at an addiction treatment center. After hearing a full history and reviewing the research articles she was agreeable to prescribing the Suboxone. It's early days yet, but so far Suboxone .5 mg has been near miraculous for Doug. He reports no alerting effect whatsoever, and taking Suboxone along with 50 mg of pregabalin he's sleeping better and feeling better than he has in months. We will see how this goes, but for now he's enjoying a remarkable improvement. Thank you so very much for the support and guidance.
Sarah

Such wonderful news, Sarah!

jitters62 wrote: Thu Jan 30, 2025 11:54 am My husband has severe refractory RLS and has been taking Hydrocodone 10 mg between 5 and 6 pm for about 2 years. It manages his legs very well most nights, but has him on wide alert for the next 8-10 hours with no sleep at all.

I had the same issues with hydrocodone and had to switch to oxycodone. I did experience some alerting with the oxycodone, so they put me on an ER OxyCotine which seems to work better at night for me.

After hearing a full history and reviewing the research articles she was agreeable to prescribing the Suboxone.

Now that's the kind of doctor we all need