Having gotten rid of almost all (but not quite!) Mirapex nearly 2 years ago, my current meds are 0.125 mg Mirapx, 600 mg Horizant, and 10 mg methadone. Eventually I hope to taper the Mirapex to zero.
I have a vulnerability to obstructive sleep apnea and once my specialist had transitioned me to increasing doses of methadone, a sleep study showed that I was now experiencing moderate to severe apnea (versus mild to none without such meds). The Horizant may be contributing as well.
The study also showed the apnea occurs only on my back; so I am able to minimize it by sleeping mostly on my sides. But even so, I have noticed that the larger the dose of methadone, the worse my sleep quality is. Over the last few months, due to a slight uptick in RLS symptoms, we raised my methadone from what had been 7.5 mg, which was bearable, to the current 10 mg, which I swear makes my sleep worse & leaves me more tired during the day than usual!
It’s well-known that opioids impair sleep architecture, cutting into slow wave sleep in particular. So not a surprise. Again, I hope to taper the Mirapex further, since that may be a factor in these little RLS fluctuations I get; without them I might be able to drop the methadone back down a bit once more.
I’d be interested to hear from others whose sleep has been impaired by opioids, and whether you found any way to deal with it (though I’m not hopeful).
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I'm 78, in the US, and have been on 10mg/day of methadone for the last 6 years. I easily sleep 8 hours per night and have great respiration, day and night, even though I'm a smoker. I do have some tiredness during the day - don't know whether to blame my age or the methadone. My only fear is that the opioid scare might someday keep me from receiving the methadone.
I also worry about this. I’m also in the US, and travel frequently. From state to state, I have had different troubles. Nevada was the absolute worst! I’m currently in New Mexico and can at least get opioids. But if things change politically, I do get nervous. I cannot imagine a life without opioids to treat RLS. I would lose my mind!
hi. I’ve been taking oxycodone and suboxone. While 7.5 mg oxy will knock me out, it causes rebound RLS throughout the day. Before bed, 1/4 of a strip of suboxone will knock me out, but I will wake up within an hour or two and be awake for two hours or so.
recently, my doctor suggested I try methadone, but in the end I decided not to and to stick with my original combination. I have fallen on a solution to skip the Suboxone every three or four nights and only take oxy. Otherwise, I take some oxy during the day leading up to my 9 PM dose of Suboxone.
It’s not perfect, and I have some days where I’m the walking dead, but no RLS on the suboxone.
The advantage of methadone is its long half-life. You're blessed to have a doc willing to let you try it. I never wake up within an hour or two of getting to sleep with it.
Is your doctor still Dr Buchfuhrer and if so are you able to get opioids in NM with his prescription. I like to keep track of this so I can help someone else in the future.
Yes ma'am. I still see Dr. Buchfuhrer. I am able to get opioids easily in NM although I must stick with CVS as they have my history. When I've tried to switch to a different pharmacy, they refuse to fill opioids. So, wherever I travel, I have to find a CVS if it's time for another refill.
Curious why a different pharmacy chain would refuse to fill your opiod prescription? I've had success at Rite Aid and switched to Walgreens for convenience a few years back. Usually they contact the doctor for clarification if they have any hesitation.
God only knows. CVS will always refill. Albertsons said no new opioid prescriptions. And several in Nevada said no never. In the state of Nevada it had something to do with the law.
A fair worry, given your experiences and sleep results. I am not on methadone, but on buprenorphine. But I just want to argue that other experiences are not too relevant, as we are all different. Having increased apnea IS a worry.
However, as you write yourself, you are still on some mirapex. It may indeed work out that when you reduce the mirapex further and succeed to come off it, you may be able to reduce your methadone dose an while after your last mirapex dose. And then hopefully the apnea will reduce along it with. Sounds like the way to go.
Unfortunately all opioids negatively affect sleep architecture, including reduced time in REM and deep sleep. As always with medication, it's a case of choosing the lesser of two evils!
Many of us have tried pregabalin and gabapentin after augmentation on dopaminergic drugs. Experts believe the dopamine agonists cause permanent damage to dopamine receptors and therefore iron infusions and gabapentinoids do NOT work.Low dose opioids have a very short half life and cause mini opioid withdrawals, the main symptom of which is severe RLS.
So, we are left with methadone and Buprenorphine.
Buprenorphine has saved my life. Literally.
My RLS was 38/40 after 5 years on 25mg Oxycontin and 150mg pregabalin. Life was not worth living.
The night I first took 0.4mg Buprenorphine, I slept 8 hours with zero RLS for the first time in around 12 years.
Experts are clear about low dose met and Buprenorphine. At low dose they are safe and highly effective. They do NOT cause addiction ( unless there's a history of drug abuse) or tolerance (the need to increase the dose to achieve the same cover).
Have a look at the Massachussets Opioid register. Most of the 500 study patients are on low dose methadone and have not increased the dose.
Same as Joolsg. I've had active RLS for around 3 decades. It's a progressive disease, as you may know. Whereas I used to be able to treat it with one Tylenol PM every three days, then one Valium every three days, then I needed it every day, then something stronger every day, and so on. I've landed at opioids which I've used consistently for years and only slightly upped the dose occasionally. Buprenorphine is a miracle for me! It's the only drug that completely eliminates RLS.
I was on methadone for a couple years. I couldn’t sleep more than 30 minutes at a time. It’s Meth in another form. I’d get off it. Have you tried Suboxone? I was reluctant to try it but it’s really helped me and I have a lot less side effects from it too. Hope this helps.
I have two thoughts for you. One: I struggle with sleep on buprenorphine and take gabapentin to slow down my thoughts so I can sleep. I assume Horizant works the same way so maybe not much of a thought.
Secondly, can you try a CPAP machine to reduce the breathing difficulties? It seems to me that the most important thing is to sleep without RLS and if your sleep is disturbed by apnoeas then a CPAP machine would help.
Thought I would see how Chat GPT does these days, seemed to give a fairly good response, though in my view underestimates RLS as the primary cause of your sleep issue ...
Your experience with Restless Legs Syndrome (RLS), the medication regimen, and its impact on sleep is complex and multifaceted. The combination of medications you are on—Mirapex (pramipexole), Horizant (gabapentin enacarbil), and methadone—can indeed have significant effects on sleep, particularly when considering the risk of obstructive sleep apnea (OSA) and the well-known impacts of opioids on sleep architecture.
Impact of Medications on Sleep
Methadone:
Opioid-induced Sleep Architecture Changes: Methadone, like other opioids, can reduce slow-wave sleep (SWS) and rapid eye movement (REM) sleep, leading to fragmented and less restorative sleep. This can result in increased daytime sleepiness and fatigue.
Respiratory Depression: Methadone can exacerbate OSA due to its respiratory depressant effects, especially at higher doses. Your observation of increased sleep apnea with higher doses aligns with this known side effect.
Mirapex (Pramipexole):
RLS Symptoms and Augmentation: While pramipexole is effective in reducing RLS symptoms, it is associated with augmentation (worsening of symptoms over time), which can complicate long-term management.
Sleep Quality: Dopamine agonists like pramipexole can affect sleep architecture, sometimes causing insomnia or sleep disturbances.
Horizant (Gabapentin Enacarbil):
Sleep Promotion: Gabapentin enacarbil is known to improve sleep by increasing slow-wave sleep and reducing awakenings. However, it can also contribute to respiratory depression and exacerbate sleep apnea.
Strategies for Managing Opioid-induced Sleep Impairment
Positional Therapy:
Avoid Back Sleeping: Since your sleep apnea occurs predominantly when you sleep on your back, continuing to sleep on your side is a key strategy. Using positional aids like special pillows or wearable devices that prevent back sleeping can be effective.
Adjusting Medication Dosage:
Tapering Methadone: Given your experience with methadone worsening sleep quality at higher doses, a gradual reduction back to 7.5 mg or even lower, if possible, may improve your sleep. Discussing a slow tapering plan with your specialist is crucial.
Reducing Mirapex: Your plan to taper off Mirapex further may help reduce RLS fluctuations and, consequently, allow for a reduction in methadone dosage.
Alternative Therapies:
Non-pharmacological Treatments: Exploring non-pharmacological treatments for RLS, such as lifestyle changes, leg massages, hot baths, pneumatic compression devices, and acupuncture, might help reduce your reliance on medication.
Medical Cannabis: Some patients report relief from RLS symptoms with medical cannabis, which might help reduce opioid use. However, this should be discussed with your healthcare provider, considering legal and health implications.
Continuous Positive Airway Pressure (CPAP):
OSA Management: If sleep apnea remains significant despite positional therapy, using CPAP can help manage OSA effectively. It might improve your overall sleep quality and reduce the daytime fatigue associated with both OSA and opioid use.
Sleep Hygiene and Behavioral Interventions:
Good Sleep Practices: Maintaining regular sleep routines, optimizing your sleep environment, and avoiding stimulants before bedtime can improve sleep quality.
Cognitive Behavioral Therapy for Insomnia (CBT-I): CBT-I is effective for treating insomnia and can be beneficial alongside your current medication regimen.
Community Insights
While individual experiences vary, many people with RLS and those on opioids for chronic pain share similar challenges with sleep. Here are some insights and strategies that others have found helpful:
Gradual Medication Adjustments: Many have found that slowly adjusting their medication dosage under medical supervision helps manage both RLS symptoms and sleep quality better than abrupt changes.
Combination Therapies: Some patients benefit from combining low-dose medications with non-pharmacological interventions, thus minimizing the side effects while maintaining symptom control.
Peer Support: Engaging with support groups, whether online or in-person, can provide emotional support and practical advice from others who have navigated similar issues.
Conclusion
Navigating the interplay between RLS, medication side effects, and sleep quality is challenging. Your proactive approach in adjusting medications and seeking ways to mitigate side effects is commendable. Consulting with your specialist to continue fine-tuning your treatment plan, exploring alternative therapies, and leveraging support from others with similar experiences can provide a path toward improved sleep and overall well-being.
after 25+ years with RLS, and a host of medications, most being in the last 6-7 years, I was prescribed methadone beginning at a low dosage, and increasingly, worked up to 20 mg. A neurologist in 2022 prescribed methadone and after two months, I gradually tapered off, due to depression, something I have never encountered in my lifetime. After a spinal cord stimulator was implanted, and the RLS was creating difficulty for me, the neurosurgeon recommended a movement disorder neurologist, who also prescribed methadone. I once again, was up to 20 mg, and slowly decreased the dosage to 5 mg of where I am today, due to the pain attacks. I am not completely convinced, as I continue to have sleep problems, where I wake up constantly during the night. I had a sleep study in a clinic last year, and they detected no limb movement, which is strange, because my husband is aware of it at night. I am seeing a sleep specialist at Mayo this month, and I think I need a fresh pair of eyes to look at my condition. To answer your question, and I have been on methadone for the second time since August 2023. I don't dare increase it due to the panic attacks. I continue to believe there has to be something else out there. Oh, the present neurologist also prescribed hydrocodone with acetaphamine fort beak-through during the night, I take 1/2 a pill, but that doesn't work on a consistent basis.
Wondering if any of you have tried the Inclined Bed Therapy (IBT) for the sleep apnea (and reflux, back pain etc- many targets). It has helped people especially with neurological issues like MS or post accidents. My husband has very resistant RLS with many trigger factors examined and natural regimes tried. The sleep apnea (with snoring that could be heard by passing walkers) and back pain are the two symptoms that have mostly responded to the IBT. Still apnea issues if too long on the back ( usually managed by the elbow of one's sleeping partner) but a recent all night sleep study showed it was no longer a significant issue overall.
His RLS symptoms are still recurrent and often severe but what has changed is that he does now eventually actually sleep. I felt the lack of sleep- more than any other however horrible symptom-was taking him to an early grave and decimating his mental function. Some days he will get up two and three times to walk around the block (the only method that temorarily stops the RL) befiore getting through that 'sleep gate'- and then he sleeps for the night. Occasionally he still resorts to Paracetemol or Codeine to induce sleep when the Sifrol isnt cutting it.
Whether or not the theories are right, I have observed and experienced benefit from this method. Very important to make the adjustment slowly over months to find the sweet spot. I wish there was more conventional research on it as it it seems that it could be making a change to the way the brain clears its waste or repairs damage.
Personally, I experienced greatly improved asthma (with less medication ) improved morning back pain and less bladder calls- just the 5.00 am dawn call- with the IBT. We have now used this system for over 5 years. We also notice that guests -sleeping in the raised guest bed-report with astonishment that they slept for the first time in years, or did not get up repeatedly for the toilet or awoke with no back pain and got up easily. Most of them would not have noticed the incline of the bed- so no placebo effect in what they report. Not the best idea to go straight into incline-but the guest bed is modest incline compared to our 'rocket bed'!
Would love to see a group here self select to try it over 12 months and note their changes- positive or otherwise. If it helps folk with illnesses like MS- just might do something for the RLS cohort.
No - I am not selling something or benefiting financially from sharing this info. Its available to anyone who cares to explore. Sleep- the great and irreplaceable healer. Best wishes.
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Psilocybin 
does anyone know if it’s safe to take 300-600 mg of Gabapentin while taking 600 mg of horizant and 2 mg of pramipexole?
Made it through the "holiday" (many thanks for your support) - what now?
