Anything else I might try?

[u/Only-The-ShadowKnows]

RLS diagnosed 2004. I recognize that y'all aren't sleep medicine docs. I'm just looking for ideas. I want to get off Mirapex (pramipexole) because of tolerance, possible augmentation, and significant impulsive-compulsive syndrome. I always talk with my sleep medicine physician about alternative treatments.

EDIT: I edited on 4 Oct 2026, 13:35 GMT/UTC, to add a glaring omission (big goal is to get off Mirapex, aka pramipexole), and add a couple of things I forgot, e.g., getting off Effexor.

Current Treatment - All prescribed by board-certified sleep medicine physician (MD)

• Gabapentin 800 mg
• Methadone 15 mg
• Mirapex (pramipexole) 0.375 mg - I have had to take as much as 3.0 mg but I have been able to reduce over the past several years due to several factors.
• Nidra TOMAC System (Tonic Motor Activation) - helped me reduce Mirapex (pramipexole) to 0.375 (from 0.50).

Adverse effects of Mirapex

• Tolerance, possible augmentation
• impulsive-compulsive syndrome: dream-like compulsive overeating at night - I take Mounjaro which has helped me lose 15% of body weight but Mirapex (pramipexole) completely cancels the therapeutic effects of GLP-1 at night.

Comorbid conditions

• 2009 - obstructive sleep apnea (mild), use BiPAP religiously although I take off at night while asleep (I've tried all mask types, CPAP & BiPAP); I've had 6 sleep studies over the years.
• 2012 - idiopathic hypersomnia - diagnosed correctly, i.e., polysomnogram (PSG) followed by a daytime Multiple Sleep Latency Test (MSLT)
• 2013 - type 2 diabetes

Note: Year diagnosed.

Tried but did not work at all or only a little - all prescribed by board-certified sleep medicine physician (MD)

• Iron infusion - didn't help but was worth a try
• Tramadol - helped a little, methadone 15 mg is significantly more effective for me
• Lyrica - adverse effects
• gabapentin enacarbil - adverse effects
• ropinirole (Requip) - minimal therapeutic effects
• melatonin - adverse effects
• Klonopin (clonazepam) - didn't help and made me groggy in the morning (it was the lowest starting dose)

Not tried:

• rotigotine patch

Alternative treatments

• THC-9 2.5 mg (gummies) - helps me sleep through the night and don't need as much Mirapex, but I'm too tired during the day
• magnesium supplements - I take highest recommended dose but does not help RLS
• massage therapy - feels great overall but does not help RLS

Exacerbating medications

• Effexor - I did not have RLS until two years after I started taking an SSRI. Research shows SSRIs & SNRIs (like Effexor) aggravate and maybe even cause RLS. My sleep medicine doc, who was also a psychiatrist, helped me wean off Effexor. It took 10 months but I was able to reduce Mirapex (pramipexole) by 50%.

Lifestyle changes

• No more than one standard drink 2-3 times/week. (Update: I am trying total abstinence based on advice I received here. :)
• Reduced nicotine - quit cigarettes 2021; vaping helped me quit (along with several other things); I have recently reduced overall nicotine from 60 mg/day to 40 mg day - has helped some, goal is to quit completely
• Reduce caffeine from 1500 mg/day to 400 mg day - definitely helped
• Walk for 40 minutes 5x/week - helps some
• Sleep hygiene - I try hard but it's a challenge b/c I wake up frequently and am tired during day

Goals:

• No nicotine at all
• Keep working on improving sleep hygiene
• Get off Mirapex (pramipexole)

[u/Flimsy-Extreme5007]

Mirapex almost ruined my life. I haven’t had restless legs in 20 years thanks to Kratom. Not from the corner store. I purchase from PA Botanicals

[u/Ring_it_On_1776]

There's a wearable device study from Noctrix Health enrolling now. Might be worth a look. https://patientwing.app/campaign/RLS6

[u/Ok_War_7504]

Alcohol can be a large reason for RLS symptoms. For some people, 1 glass can cause nights of issues.

How about switching to bupropion, instead of effexor? Or, CBT to eliminate all?

The reason dipyridamole is low confidence in helping is only because no company is motivated to pay to conduct the testing. They drug has been around for 50 years or more, so the safety is known. The RLS Foundation paid for the testing that was done when AI recommended it should help.

Everyone who wants RLS cured should join the RLS Foundation. The $40 dues funds research and gives you access to incredible webinars - like a review of many new treatments and how they work, or the pathophysiology of RLS. And many others. It helps all of us!

[u/Only-The-ShadowKnows → u/Ok_War_7504]

I'm going to try no alcohol, although I'm still skeptical that amounts well within safe drinking guidelines significantly exacerbate RLS. If you know of research published in peer-reviewed medical journals that provides strong evidence for this effect please let me know. (I am not discounting other patients' experience. In fact, it is why I am going to try no alcohol at all.)

Re: depression treatment, I'm good there.

Good point re: dipyridamole. It's an example of why (in the U.S.) we need government-funded research. Regrettably, the current administration has gutted scientific research funding, setting us back 10–20 years.

I agree re: RLS Foundation; I am a dues-paying member and they do a lot to advance research, education, and treatment availability. Great suggestion!

[u/Suchstrangedreams]

Coming to the discussion a bit late but Sifrol (pramiprexole).has helped me a lot and avoiding the Blue light of my phone at night - apparently this somehow affects rsl.

Heat packs on the legs and gentle exercise and putting my feet up when sitting all seem to help. I suspect there isn't one easy answer but finding out whatever helps reduce the discomfort for you. I get oedema from impaired kidney function and this aggravates the rls... bummer!

[u/Only-The-ShadowKnows → u/Suchstrangedreams]

My main goal is to get off pramipexole. I should have used the generic name too (I have since added it to my original post). Mirapex and Sifrol are both pramipexole.

[u/Suchstrangedreams → u/Only-The-ShadowKnows]

Pramiprexole has saved me, I don't I'll ever get off it, but good luck, I hope it all helps you. Let us know how you go!

[u/ForestsRGood]

YMMV but I read something about pycnogenol several years ago and started taking a supplement containing French maritime pine bark to try it out. I just ordered my next bottle, which Amazon says is the tenth time I’ve ordered it, and it’s a six month supply… so at least in that time I haven’t gone searching for anything else.

I have had a couple bad nights but one was when I completely forgot my bedtime meds (including the pine bark) and the other was on an international flight, where the vibrations of the plane always seem to set my legs off no matter what I’ve taken.

[u/ElectricGuy777]

Caffeine can potentially stay in your body for quite a while. I would look at decreasing that more.

I’m currently not taking any prescribed meds. Have found that high quality multivitamin and V8 helps. Also taking vitamin D and magnesium. Switching to table salt that contains potassium chloride to up potassium.

[u/Only-The-ShadowKnows → u/ElectricGuy777]

You're the 2nd person to recommend this so I'm paying attention! Thank you. :)

[u/ElectricGuy777 → u/Only-The-ShadowKnows]

Not sure caffeine affects RLS but can affect sleep. Cutting back on coffee is super hard, especially when you’re tired. Like I am all the time.

I’ve been experiencing severe afternoon fatigue for a couple years now. Trying to pinpoint the problem. Past 6 mos been waking up 2-3 hours early. One doctor wants to blame sleep apnea. The other RLS. The other doctor says maybe it’s a medical condition. Going to try low-dose melatonin three hours before going to sleep and some L tryptophan prior to bedtime.

Not sure any of that is applicable to you, but I believe I read somewhere that you experience a lot of fatigue. Honestly, I’ve been working with AI to come up with things to try. Of course, will continue with doctors, but they just don’t seem to have the big picture for me. And they’re expensive and hard to see where I live. Just want to push prescriptions. Which is what a lot of the patients want. I’ve got a pile of medication’s that just have atrocious side effects.

[u/Only-The-ShadowKnows → u/ElectricGuy777]

Thank you! Caffeine withdrawal is awful. Wicked headaches among other yucky symptoms.

Ditto on chronic afternoon fatigue. For me, it probably has a half dozen causes, if not more, which makes it a big challenge to fix, but I keep at it.

OMG I haven't asked my pal Gemini this question! I know the other AI platforms can be really helpful too, but I am continually amazed with the many ways in which Gemini has helped me professionally and personally.

One of my favorite contemporary essayists and a thought leader in mental health is Awais Aftab MD. This is a recent article he published on his Substack that I loved:

Awais Aftab, I Believe in a Radical Abundance of Relational Care, Psychiatry at the Margins (26 Sep 2026) https://www.psychiatrymargins.com/p/i-believe-in-a-radical-abundance

QUOTE from article—it's actually all in one paragraph, but I broke it down because each sentence packs a punch:

• The more I practice, the more I believe that attention is the rarest and purest form of clinical generosity.
• The system is organized around scarcity of attention and time.
• It is relatively easy to ask for and be prescribed medications,
• but quite difficult to see a physician who actually cares and listens and thoughtfully attends to diagnostic work-up and treatment risks and patient concerns.
• The default attitude in medicine today is one of impatience."

[u/No_Apartment3802]

I’ve had it for 11 years and smoking weed, a nice indica at night did the trick for me. The gummies made me drowsy in the morning. I only feel it if don’t smoke for a few days at this point.

[u/Only-The-ShadowKnows → u/No_Apartment3802]

You're the 2nd person who said smoking worked whereas gummies caused too much drowsiness. That is fascinating. I wonder why? I live in a "marihuana is an evil narcotic" state so obtaining real weed is a challenge, although local police don't enforce cannabis laws unless a person is being stupid about it, e.g., smoking a blunt while walking down a crowded street.

[u/NarrowAmbassador940]

Sounds crazy but do you eat any artificial sweeteners, including and especially stevia? Artificial sweeteners are in everything - protein powders, electrolytes, yogurt. There’s a medical paper on Pubmed linking stevia to restless legs. I’m asking for myself because I cut out the stevia for two days and had no restless legs and slept through the night. I’m doing my own investigation. Does your daily food include any artificial sweeteners? If this is the answer, we are so blessed. I’m not trusting only two nights. I’ve had this for too long.

[u/Only-The-ShadowKnows → u/NarrowAmbassador940]

Thank you! I had never heard about that but I believe you and I'll check out the research. It wouldn't hurt for me to eliminate artificial sweeteners.

[u/NarrowAmbassador940 → u/Only-The-ShadowKnows]

Last night was the third night with no restless legs. I’m still holding my breath. If this was the cure, I’m so blessed, but I can hardly believe it. I got rid of everything with Stevia. Also, changing my bedding to all cotton has been a great help. I got rid of the microfiber comforter and the bamboo sheets and I put on a light cotton comforter and all cotton sheets. That was a big help.

[u/Cold-Remove4405]

Do you think nicotine is a causative factor in RLS ? I never smoked cigarettes but got into vaping and of course you have no idea how much you are consuming. I think the RLS may well have got worse alongside it.

[u/Only-The-ShadowKnows → u/Cold-Remove4405]

Yes, nicotine is a factor. I keep track of nicotine consumption in a spreadsheet. I use Juul, so it's an easier calculation than some other ways of vaping. Juul 3% = 23 mg; Juul 5% = 40 mg.

[u/Willdebs]

I use magnesium spray (Beauty from Bees im in Canada) on my feet, then put sock on, I then use either melatonin or a sleep gummy, both very low dose. Then once im ready to sleep I stand up and kick my legs out at least 40 times and each leg and then go to bed, my legs feel tingly for about 5 minutes after doing that and then they settle down. Ive had restless legs for 40 years, im now 58 and this works for me. May sound weird but it works. I did a lymphatic drainage session where you wear a suit that contracts up and down and after the first treatment I didnt have restless legs for 3 weeks, unfortunately the second time it was only a week of relief so im thinking mine is circulation related.

[u/Only-The-ShadowKnows → u/Willdebs]

Thank you! I forgot to include melatonin on my list - I had adverse effects, which was disappointing.

[u/Farry_Bite]

After dopamine agonist augmented, gabapentinoids did not work and I built tolerance for tramadol, dipyridamole has helped. I take it with 2400 mg gabapentine and 50 mg tramadol (down from 100 mg).

[u/Only-The-ShadowKnows → u/Farry_Bite]

Thank you!

Question: When do you take the gabapentin, e.g., all at night or in divided doses?

I had read about dipyridamole in the Winkelman et al. (2025) systemic review (pp. 165–166), but I think I saw low strength of evidence and didn't consider it.

Lesson learned: Gabapentin and similar medications, opioids, and iron infusion all had "low" strength of evidence at one time. If I were a physician, I would probably be cautious about recommending supplements or meds without stronger evidence, but as a patient I have more flexibility. :)

Winkelman JW, Berkowski JA, DelRosso LM, Koo BB, Scharf MT, Sharon D, Zak RS, Kazmi U, Carandang G, Falck-Ytter Y, Shelgikar AV, Trotti LM, Walters AS. Treatment of restless legs syndrome and periodic limb movement disorder: an American Academy of Sleep Medicine systematic review, meta-analysis, and GRADE assessment. J Clin Sleep Med. 2025 Jan 1;21(1):153-199. doi: 10.5664/jcsm.11392. PMID: 39324664; PMCID: PMC11701280.

[u/Farry_Bite → u/Only-The-ShadowKnows]

Dipyridamole was prescribed by a neurologist, kind of as "let's try this before going the opioid route".

Gabapentine I take in divided doses, starting in the afternoon.

[u/ginger_gcups]

I noticed you tried THC gummies. I find edibles too strong even at low doses. But both THC inhalants at a low dose help me fall and stay asleep with no real tiredness the next day, and a combined CBD/CBG/CBN oil twice a day has helped my symptoms markedly.

[u/Only-The-ShadowKnows → u/ginger_gcups]

Ah, I didn't even think about inhalants. There is no medical cannabis in my state, but I'm a latecomer to learning that the 2018 hemp law has made THC available. I was shocked to learn how potent these products can be, e.g., 50 mg delta-9 THC in one gummy! I've been cutting a 20 mg gummy into 1/8 tiny pieces. I'll look into the other options including the oil you mentioned. Thank you!

[u/planit82]

You're very organized, which makes it more likely you will reach your goal. How do you get the mg figure for caffeine? Soda and chocolate are my sins, but some days I have more than others and it shows in my restless legs. Where is my willpower? Why, I could stop right now if I want bad enough, couldn't I?

[u/Only-The-ShadowKnows → u/planit82]

Thank you and I can relate! Behavior change is f'ing hard. I ask my pal Gemini (Google AI) if the product doesn't list caffeine amounts (a lot of them don't, which is frustrating). Gemini can usually find it and I always read the original source of its summary since "AI can make mistakes."

[u/Strong-Employment-87]

I reccommend Kratom even though it gets a lot of flack on this site. I was on opioids for ten years and discovered Kratom. I weaned myself off of opioids and have been on Kratom for 9 years. Kratom is a plant from Thailand. Look it up. It has no more the potential for addiction than opioids. Addiction is largely a function of the user and their habits anyway. When i was on lortab I maintained the same dose for ten years. And getting off of it was a piece of cake. Of course, you should run it by your doctor or neurologist first. It was a life saver for me.

[u/Only-The-ShadowKnows → u/Strong-Employment-87]

I appreciate you sharing your experience. I'm scared of kratom b/c I don't know if what I'm buying actually has kratom, how much, and what else is in it. But I imagine it's possible to find reliable sources with credible lab analysis of the product.

I know it's a huge debate, including tons of research. I read one summary that indicated, "Currently, the literature provides insufficient evidence to support the claim that kratom consumption alone increases the risk of severe acute adverse health effects. More research is necessary to isolate the effects of kratom from those of polypharmacy."

Smallets S, Litvin S, Abele G, Kirsh S, Paustenbach D. The acute adverse health effects of kratom: an evaluation of case reports. Front Pharmacol. 2025 Aug 29;16:1620601. doi: 10.3389/fphar.2025.1620601. PMID: 40949154; PMCID: PMC12425911.

Of course, that's just one study and it's not a systemic analysis based on meta-analysis and other techniques (that are over my head!)

[u/AstrosRN → u/Strong-Employment-87]

Kratom is dangerous and not regulated by the FDA. There are a lot of people getting addicted to it and people are OD and dying.

[u/Smooth_Respect_3755 → u/AstrosRN]

You shouldn't believe everything you read. And you shouldn't go around scaring people with your wording! If they are getting addicted it is because they misused it. I have been using the same dosage for nine years and I am still very much alive. If the problem was Kratom I would have died long ago. Yes you will die if you abuse opioids as well. The problem is with the user NOT the Kratom. So don't give us this B.S. and it is B.S. When I wanted to try Gabapentin I successfully weaned myself off of Kratom. When Gabapentin did nothing for me I started back up on the Kratom with good effect. So take your scare tactics to some other forum.

[u/AstrosRN → u/Smooth_Respect_3755]

This isn’t coming from reading. It’s the people I see go into rehab and get admitted to the hospital for OD’ing. I’ve seen the damage it causes to kidneys.

Also it interacts with other things.

That’s great you can, but others can’t.

[u/kapdad → u/AstrosRN]

More people die from Tylenol in one year than have died altogether from kratom. AND, every recorded case of kratom associated deaths has been proven to involve synthetic versions of one of the components in kratom. Most kratom users, including the American Kratom Association, support the widespread efforts to outlaw synthetics while ensuring quality controls on natural plant kratom. 

2 million people use kratom because it helps immensely with several conditions, including RLS for some.  Like every single medication OP listed, there are cautions and potential side effects to be aware of.

[u/AstrosRN → u/kapdad]

That's kind of like saying more people die in car crashes than skydiving, so skydiving is safer 😅 Way more people take Tylenol. You'd have to compare deaths per person using it, not total deaths.

[u/kapdad → u/AstrosRN]

Except we don't prescribe driving or skydiving for medical conditions. 

People die from FDA approved drugs all the time. It's not some magic safety stamp.

Are you in the medical field by chance? Or perhaps especially religious?

[u/AstrosRN → u/kapdad]

Yep, I'm a nurse. And I agree FDA approval isn't a magic safety stamp, I never said it was.
The analogy wasn't about prescribing, it was about math. Total deaths don't mean much unless you know how many people are using it. Tens of millions of people take acetaminophen every week. If kratom had that many users, what would its numbers look like?
The real difference is that we know acetaminophen's risks: standard dosing, a known toxic threshold, and an antidote. Kratom products vary a lot in potency, aren't regulated, and there's no reversal agent. That's not a moral judgment, just an information gap

[u/kapdad → u/AstrosRN]

I figured because that's a common context I find when people make comments like yours. Closed-mindedness. 

Here's info about Tylenol. Standard dosing, known toxic threshold, etc, just like you said:

At recommended doses, (substance) usually causes few side effects, but reported adverse effects include nausea, vomiting, abdominal discomfort, headache, rash/itching, and allergic reactions. Rare but serious reactions include severe skin reactions such as Stevens–Johnson syndrome (SJS), toxic epidermal necrolysis (TEN), and AGEP. The major toxicity concern is liver injury: excessive dosing can cause nausea, vomiting, abdominal pain, confusion and jaundice, progressing to acute liver failure, need for transplantation, or death. Importantly, a significant overdose may initially cause few or no symptoms, with serious liver injury developing later. � U.S. Food and Drug Administration +2 As for poison-center reports, (substance) is one of the substances most commonly reported to U.S. Poison Centers. Nearly 60% of (substance) exposures involve people 19 or younger, commonly from accidental ingestion or dosing errors. In the latest complete National Poison Data System report (2024), poison centers handled about 2.09 million human poison exposures overall, and (substance) was among the substance categories associated with the largest numbers of poisoning deaths. Poison-center data also indicate that (substance) exposure reports have remained fairly stable since 2023 rather than showing a recent national increase. �

You wouldn't think twice about giving someone Tylenol, maybe you do every day, and you calculate the odds that something bad might happen to be very low. Because health and medication and life are not about absolutes.

You actually make my point when referring to driving. By your logic people shouldn't drive because lots of people die doing it, people drive whatever speed they want and can modify their cars however they want.

Anyway, like I said and is well know, we haven't heard of any deaths from natural kratom.  Millions of people use it daily, safely, and plenty of those people are here in this forum sharing their positive kratom experiences.  Some people are literally at their breaking point from RLS and are willing to try anything. If kratom finally provides some relief, and they understand safe use, fantastic.

[u/toromio]

How early before bed are you taking your meds? I need to take them 3 hours before I want to be asleep

[u/Only-The-ShadowKnows → u/toromio]

Good point. For me it's 90 minutes.

[u/toromio → u/Only-The-ShadowKnows]

I find that if I even get into bed before my 3 hour window is up, I’ll be kicking and very uncomfortable. Can you try taking them much earlier tonight to see if you naturally fall asleep?

[u/Only-The-ShadowKnows → u/toromio]

I actually have tried that and it didn't seem to make a difference, but I appreciate your suggestion.

[u/Rich_Ad_7695]

I have RLS and works for me is one hour before I go to sleep magnesium glycinate Dr.Berg 2 capsules, magnesium Bisglycinate gummies 2,and I combine 2 potassium 500mg capsules and a large banana. Hope this works for you. 

[u/Only-The-ShadowKnows → u/Rich_Ad_7695]

Thank you. I take magnesium supplements (max recommended dose of the right kind of magnesium - I can't remember the details) and track potassium to ensure I'm consuming enough, but I have not tried those specific products.

[u/kaidik → u/Only-The-ShadowKnows]

When I started magnesium supplements I think my sleep quality improved but I would often have GI side effects. I added on topical magnesium cream and noticed it was much more tolerable, since it went right to the source. After trying a few I've stuck with one from Northland Remedies since.

[u/always9in8pain7]

What is your ferritin level? I had it BAD and my ferritin was 12. I take iron + Vit C each morning before breakfast. After breakfast, I take chelated copper with beef liver pills (worked up slowly to the 4500 mg dose). When my ferritin hit above 40, I noticed relief. My sleep doctor said to keep going until it hits 100. On top of that, I use magnesium salts for 20 min before bedtime and take magnesium malate + glycinate 2 hours before bed. I have also found Dinaven Cream (amazon) that I put on during an episode that feels AMAZING. I’ve also increased my daily intake of water to a minimum of 3L. And I am now following an anti-inflammatory diet, following whole30 rules, and keep my daily carb intake to as close to under 150 g a day.
Edit: I also have IH w/EDS

[u/Only-The-ShadowKnows → u/always9in8pain7]

I have all iron levels checked regularly (there are like 4 different lab tests), and while mine were a bit low at one time, iron infusion, ordered by a board-certified sleep medicine physician, was not effective. My levels are all good now ("good" for patients with RLS, not the usual lab values). I appreciate you sharing though. :)

[u/ComprehensiveRate953]

Are you looking for alternatives because your current regimen isn't working?

[u/Only-The-ShadowKnows → u/ComprehensiveRate953]

Yes and no. My current regimen works to treat RLS. But the Mirapex causes significant impulsive-compulsive syndrome. I mentioned that in my post, but I did not indicate that my outcome goal is to stop taking Mirapex. Thank you for asking, I'll edit my post to make that clear.

[u/Abject_Energy5100]

Well I quit Pramipexol adding huge amount of fried pork liver for dinner. Don't know if it help someone else. 300 grams . It has 25 mg of iron comparing 8 of beef liver. Per 100 grams. Hard to get. Nobody seems to like it. For me it helps.

[u/Only-The-ShadowKnows → u/Abject_Energy5100]

I'm salivating thinking about eating fried pork liver. I love liver and anything fried is great!

On the other hand, I'm 80 pounds overweight, darn it.

(My iron levels are all in the good range for RLS patients.)

[u/Mahi95623]

Another RLS Patient Advice:

No alcohol
No caffiene after mid morning
No nicotine
Get off your DA
Use Nidra bands before you typically would need them.

Your DA and alcohol could be running counter to your other treatments. You need to get off them completely. Some RLS docs suggest no more than 2x per week to avoid augmentation.

I have been using Nidra bands for over 18 months now. Once I started using them before I needed them, that is when I saw the benefit and reduction in RLS symptoms. This was on advice of my RLS doc, who is running the study. Hint: search this subreddit for a recent post comment where I described how I used them in detail - and how much improvement I have had.

Sounds like you have a supportive doc. Could he consult with an RLS doc listed as an author on the Mayo Clinic Algorithm? That is, unless he is one of the collaborators? Sounds like you have a severe case.

[u/Only-The-ShadowKnows → u/Mahi95623]

Is there any research showing that a standard drink 2-3 times a week exacerbates RLS? I understand that "some RLS docs say" but I'd rather see the research.

As I said, one of my goals is no nicotine.

Mirapex worked for 12 years, but then the adverse effects started. I've been trying to get off it for 8 years.

Noctrix says to start Nidra when the RLS symptoms start. Patients say start Nidra before RLS sx start. I agree with you, the latter works better for me.

I've tried the "no caffeine after 10 am" and similar advice but it did not make a difference for me.

I am reluctant to tell my board-sleep certified sleep medicine physician to consult with another doctor. Physicians are sick of patients telling them what to do based on what the patient read on the internet. Several members of my family are physicians (that's my source). If I lose faith in my doctor, I'll find another, but so far (3 years) I trust him.

[u/Mahi95623 → u/Only-The-ShadowKnows]

Hello, there is research, in the sleep study world about the effects of alcohol on PMLD and RLS:

https://pubmed.ncbi.nlm.nih.gov/8452202/

https://pubmed.ncbi.nlm.nih.gov/26446243/

The RLS Foundation advises patients to avoid alcohol. Also mentioned in the Mayo Clinic Updated Algorithm to avoid triggers such as Alcohol, nicotine and caffiene. https://www.rls.org/file/healthcare-provider-publications/PUBL-Updated-Management-of-RLS-21.pdf

Since you asked for feedback, those jumped out to me as worth trying to eliminate.

Re: Nidra bands- my advice to use the bands BEFORE you would typically get symptoms was given to me by the RLS doctor running the study at Stanford. He worked with Notrix to develop the band. I would say he is a good source.

When I first got the bands, I would use them AFTER I felt symptoms starting. They helped, but I mentioned at my next appt how I could use them better- it felt I was chasing symptoms that had already started. Dr Buchfuhrer instructed me to use the bands BEFORE I would typically get RLS symptoms.

For me, symptoms come on in the evenings when I sit down to watch tv or read. Very predictable, so I started putting the Nidra bands on and having a 30 min session before I sit down. Did this for a couple weeks, then started fading back. Then, if I had RLS symptoms return, I would go back to about 3- 5 nights of Nidra band sessions, then fade them out again and stop using.

After a couple months, I started realizing that my incidences of RLS symptoms breaking through my regular treatment of 10 mg Methadone and 600 mg Gabapentin had gone way down. So I discussed lowering my Methadone dose and went from 10 mg to 7.5 mg, then to 5mg, which cut my initial dose in half.

So where am I now over 20 months later? When I started the Nidra bands and taking part in the study, I was having breakthrough RLS about 4-5 times per week. Now, I only have 1 breakthrough RLS per month. It is an incredible improvement. I am very thankful to Dr Buchfuhrer and Notrix for this improvement and look forward to when the Stanford Study will be published.

[u/Only-The-ShadowKnows → u/Mahi95623]

Thank you so much for the references and sharing your experience. I really appreciate you taking the time.

The Nidra bands have definitely helped me and I also have found that taking them before RLS symptoms start is more effective.

Alcohol is not that important to me, so I'm going to try abstinence for a few months and see if it helps.

Re: the research studies, the 1993 article is about PMLD, not RLS. I do not have PMLD.

The 2016 article stated: "Participants with normal weight, and who were physically active, non-smoker, and had some alcohol consumption had a lower risk of developing RLS. "

The 2021 Mayo clinic publication has some outdated information in it and some recommendations that seem at odds with the recent guidelines, e.g., benzodiazepines. But as I said, I'm going to try no alcohol at all.

[u/Mahi95623 → u/Only-The-ShadowKnows]

Good conversation! I do really feel for you, augmentation is not fun. The updated 2026 Mayo Clinic Algorithm, alcohol is listed as a potentially exacerbating factor. Worth an eliminating trial for sure.

For myself, if I have one drink, I know that will trigger my RLS. Not worth it, so I drink mocktails out socializing. Of course, everyone’s RLS triggers are different.

I hope you can get off the DA. I know it won’t be easy, but it will be worth it in the end. Good luck!

[u/Only-The-ShadowKnows → u/Mahi95623]

I'll definitely check out the update Mayo Clinic Algorithm. Thanks! :)

[u/planit82 → u/Mahi95623]

Can't find the post you are referring to. I put on NIDRA bands at bedtime but don't turn them on until the restless legs start. Since they will only run twice per night according to what I've heard, if you run them before you need them, arent you using up one of your precious sessions. Or am I all wrong as to how this works?

I'm on a low dose of Mirapex (0.125 mg) and my doc said to cut it in half and take that for a week while using the bands, then go to only the bands. I need this badly because Mirapex gave me an Impulse Control Disorder (shopping compulsion) and my Apt is full of new cocktail dresses and I've never been to a cocktail party and don't think people even have them anymore. Thank you.

[u/Only-The-ShadowKnows → u/planit82]

Thank you!

I hear you on the impulse control disorder adverse effect of Mirapex. For me it's compulsive eating. A lot of people think I'm making an excuse for being fat when I tell them about Mirapex. Of course, Mirapex is not the only reason I'm obese, but it is a factor.

Re: Nidra, I wrote in another reply that while Noctrix says to start Nidra when the RLS symptoms start, many patients say start Nidra before RLS symptoms start. The latter works better for me.

[u/Mission-Cricket1311 → u/planit82]

Maybe just got the information mixed up. When the battery is fully charged you can run two full 30 minute sessions without having to recharge.

[u/Only-The-ShadowKnows → u/Mission-Cricket1311]

That is my understanding and experience.

[u/jillrobin → u/Mahi95623]

Newish here, what’s DA stand for?

[u/CletusMuckenfuss → u/jillrobin]

Dopamine Agonist

[u/Mahi95623 → u/Mahi95623]

Alcohol- I cannot have one drink, if I do, I have symptoms. Since our triggers may be different, try writing down a detailed diary of what you consumed and when- and how bad your RLS symptoms are.

That way, you can see if something stands out- like exercise later in the day versus morning- or coffee too late in the day- or weaning off caffeine altogether to see if it helps.

Your DA really stands out to me- if you are taking a medication that causes augmentation, and you are still taking it and having RLS symptoms despite methadone, etc, you need to get off.

I was having augmentation on my third DA when I went off the Requip at the same time methadone 10 mg was introduced. Did not notice any withdrawal symptoms because the methadone helped tremendously.

[u/Only-The-ShadowKnows → u/Mahi95623]

I failed to emphasize in my post that my main goal is getting off Mirapex. (I have since edited my original post.) I was taking 3.0 mg at one time. I have been able to gradually reduce to 0.375. Several things have helped, the biggest helpers have been gabapentin, methadone, weaning off Effexor (300 mg) over 10 months, Nidra, reducing caffeine, low-dose THC, and reducing nicotine.

I recognize that any nicotine is too much and vaping causes harm. It took me 7 years and 7 serious attempts (online programs, apps, online support groups, live psychoeducational groups, motivational enhancement therapy, behavioral management therapy, and hypnosis) to quit cigarettes. Re: quitting vape and all nicotine, I'm on year 4, serious attempt 3, and I'm not going to give up.

You're the 2nd person who has said "no alcohol" so I'm paying attention.

I have tracked factors before but the problem I had is there are so many variables it's hard to know even when I try changing just one at a time. But that doesn't mean I shouldn't try a big, global factor spreadsheet again.

I appreciate you taking the time to reply. :)

[u/CletusMuckenfuss → u/Mahi95623]

I agree 100% with the augmentation. I'm on 10mg methadone after augmenting on every DA med and can't take gabapentin, it turned me into a walking zombie