Restless legs syndrome

[MCM1717]

I have been struggling with RLS for over 4 years. I can't sleep more than 3-4 hours per night. I have tried prescription medications and yoga. Nothing helps.

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here

You mention mirapex and ropinirole in your profile. If they didn't help, it is likely that you don't have RLS.

All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.

Do these all apply to you?

[MCM1717 in reply to SueJohnson]

Yes

[SueJohnson in reply to MCM1717]

That is very strange because those medicines are often used to test if you have RLS. But I am glad they didn't work because they are no longer the first line treatment for RLS. Gabapentin or pregabalin are.

When you see your doctor ask for a full iron panel. Stop taking any iron supplements 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. 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 your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.

Ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 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 of gabapentin and pregabalin 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 you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin).

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 uptodate on it as yours isn't or s/he would never have prescribed ropinirole nor mirapex at Https://mayoclinicproceedings.org/a...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, fennel, low oxalate 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, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, 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, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[Joolsg]

Are you currently taking any medication? There are many that can trigger/worsen RLS.If you list ALL current medication, including cough, cold, allergy medicines, we can help.

[MCM1717 in reply to Joolsg]

Requip, Mirapex, Trazadone, Effexor, Metformin, Crestor, Mounjaro, Skyrizi, and Xanax when necessary.

[Joolsg in reply to MCM1717]

Can you let me know which state you live in?You are clearly suffering drug-induced worsening of your RLS, known as Augmentation.

It's extremely common and Dr Earley at Johns Hopkins states that EVERYONE taking requip and Mirapex will suffer it.

Are you taking BOTH?

Effexor is an anti depressant that triggers/worsens RLS.

Metformin and crestor are statins, both of which worsen RLS.

Mounjaro is as yet an unknown as these type of drugs are relatively new, so reports are not yet in on whether they worsen RLS.

You need to see a good RLS doctor who will get you safely off requip and Mirapex and find safe substitutions or life style changes to get you off effexor, Metformin and crestor.

I attach articles on augmentation and you will also need to get full panel, morning, fasting bloods to ensure your serum ferritin is above 100, preferably 200.

rls-uk.org/augmentation-reb...

sleepreviewmag.com/sleep-tr...

[MCM1717 in reply to Joolsg]

I usually dont take both Requip and Mirapex, i alternate them. My last Ferritin was 2 L on October 11th which I understand is very low so I started taking Liquid Iron. I cannot go off of Effexor, Creston or Metformin as those are prescribed for ongoing medical conditions.

[Joolsg in reply to MCM1717]

I'm aware of that, which is why you should see a good doctor, knowledgeable about RLS who can discuss fully and see if there are safe replacements.Many comorbidities, like high blood pressure, heart issues, diabetes can be resolved if the RLS is properly treated. If you are getting 8 hour's sleep at night, and no RLS in the day, your overall health improves.

But, you need to get off requip and Mirapex. They are the reason you are only sleeping 3 or 4 hours a night. The links explain it all.

We are seeing a new person with this common complication every day on the help forum and the advice remains the same.

Your RLS will not improve until you stop ALL dopamine agonists.

Once through withdrawal from requip and Mirapex, your health should start to improve, and you can discuss getting off the trigger meds.

If your RLS only started 4 years ago, it's highly possible that effexor, and the statins may have triggered it.

Follow SueJohnson advice.

Get your serum ferritin above 100, preferably 200 and slowly reduce the requip and Mirapex.

[SueJohnson in reply to MCM1717]

I don't know why you are taking both trazodone and effexor as both are anti-depressants. And as Joolsg said effexor can make RLS worse, while trazodone is fine for RLS and also treats anxiety and insomnia. I would discuss coming off effexor with your doctor. There is another antidepressant that is safe for RLS - Wellbutrin.

For crestor: Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.

[MCM1717]

I am in Florida

[Joolsg in reply to MCM1717]

Some very good doctors. Dr Berkowski operates out of Florida.Here are his details. Also join rls.org and they have great local help groups.

relacshealth.com/

There's also the Jacksonville Sleep Centre. They would help you off dopamine agonists by prescribing pregabalin, gabapentin or Buprenorphine.

google.com/search?client=ms...

[SueJohnson]

On the iron take it with 100 mg of vitamin C or some orange juice since that helps its absorption. Since your ferritin is so low take it every day at the same time so it is at least 24 hours apart since when you take it hepcidin is released which prevents iron from being absorbed for up to 24 hours, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. It takes several months for the iron tablets to slowly raise your ferritin. If you can, ask for an iron infusion as that will raise your ferritin faster and will help you get off the DAs. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.

What is the name of the liquid iron you are taking and how much elemental iron does it contain or if you don't see that on the bottle, how many mg is it? You may not be taking enough.

[SueJohnson]

I misunderstood when you said the Mirapex and requip didn't help you. I though that meant you weren't taking them. Joolsg is right when she said you need to come off them. Requip is an extended release tablet and can't be cut because it is a 3-layered tablet with a central, active-containing, slow-release layer, and two placebo outer layers acting as barrier layers that control the surface area available for drug release. Since you alternate between them, I would suggest you stick to the Mirapex and take that every day.

Mirapex and requip are no longer the first-line treatment for RLS, gabapentin or pregabalin is. It used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. To come off Mirapex, reduce by half of a .125 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. 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.

On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off mirapex although it won't be fully effective until you are off it for several weeks. After that 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 divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin 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 of pregabalin)." If you take magnesium even in a multivitamin, 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 within 2 hours for the same reason (not sure about pregabalin).

[MCM1717]

I appreciate your input but I have been on antidepressants my entire adult life and I have no intention of getting off them. I have been diagnosed with anxiety disorder since I was a child. The effexor is used as an overall treatment for anxiety disorder and the trazodone is not an anti depressant it is an anti anxiety medicine that i take only at night. I was on Prozac for 25 years which suddenly stopped working when I started perimenopause. I tried several different medications until I found one that worked, Effexor. I can stop taking the trazadone and requip but I cannot stop taking the effexor. I was wondering if either of you are doctors. You are giving alot of suggestions to people when you are not aware of their medical histories. Not everyone can just "stop" taking their medications. I will continue looking into the iron, magnesium etc. Gabapentin was the first medication I took for RLS and I experimented with different doses etc. for a long time. In the end it did not help my RLS so that isn't the solution for me. I have an appointment with my Neurologist on Tuesday and I will talk to him about alternatives to Requip and Mirapex.

[Hidden in reply to MCM1717]

No-one is suggesting you just stop your medications. Jools and Sue are saying that if you want to stop RLS and improve your sleep, consider alternative medications. I first developed RLS while on Effexor over 25 years ago. I hope you find your solution.

[MCM1717]

Also, the RLS started when i began perimenopause so i believe there is a hormonal component. I tried some HRT but that made the anxiety worse. I am on a low dose estrogen pill now that helps. Everyone's situation is unique so your advice is not always the solution. Again, I appreciate the input.

[DesertOasis in reply to MCM1717]

No matter what please keep us posted. We can learn a lot from your situation. You are one of many people who have come on here that were able to take SSRIs, and especially SNRIs, for years, beginning in young adulthood, and then not??? Also, people seem to do better on higher doses of these serotonin raising substances than lower doses, including melatonin. People come on here who are taking 10mg of melatonin and claim it doesn’t bother their RLS whereas my RLS was turned into the devil incarnate with just .5mg.

I know that at doses of 225mg a day, the Effexor will start inhibiting the reuptake of norepinephrine. “Per DrugStats: “Venlafaxine is essentially a selective serotonin reuptake inhibitor at 75 mg, and with higher doses such as 225 mg/day, it has significant effects on the norepinephrine transporter in addition to serotonin.” So, at this point, it is simultaneously raising serotonin and norepinephrine AND acting as a “dopamine agonist” (per below article) and that may be why it didn’t bother your RLS??? See attached: ncbi.nlm.nih.gov/pmc/articl...

Did you lower your dose of Effexor four years ago by chance? If you did, I’m guessing that’s the culprit (or one of them) behind your RLS? Also, as we age, our dopamine receptors do as well, to the point where we can no longer tolerate the “symptom-provoking” substances we once could when we were younger, such as Effexor.

Metformin also raises serotonin and has mild anti-depressant and anti-anxiety properties and runs the risk of provoking symptoms of RLS. Statins as well can provoke symptoms and you should try to take the Crestor first thing in the morning, maybe.

Your silent predisposition to RLS may very well have been provoked, as you begun menopause, but then between the HRT and now straight estrogen you are forever provoking symptoms.

The good news is, Effexor (at least at lower doses) is a dopamine antagonist and great at enhancing the D3 dopamine receptors. We with RLS desperately need our D3 receptors enhanced. Effexor is just too painful a way to get there for most of us. Just about everything you’re on enhances the D3 receptors!!! And would put most of us six feet under. I don’t know how you’ve survived to tell us your story tbh?

It’s all so incredible and confusing, yet in some way not? Substances like Mirapex, a dopamine agonist, relieves the symptoms of RLS, but we pay a huge price for this relief. In the long run, it makes our genetically lousy D3 receptors even more lousy, until we have wildly out of control RLS. Whereas the substances that immediately make the symptoms of RLS worse, like the SSRIs, Metformin, some statins (ones that cross the blood brain barrier), melatonin and calcium channel blockers (ones that cross the blood brain barrier) actually increase the number and density of our D3 receptors. They’re even looking at Metformin as a treatment for Parkinson’s because they believe it is neuroprotective and good at enhancing the dopamine transport system.

So there you have it! Are you feeling at all brave, or in the mood to experiment? Start by weaning off the estrogen. It too builds up the receptors, but is horribly painful in the process. Maybe bid it farewell. Follow that up with switching out the Effexor for Wellbutrin. You can always go back to the Effexor if you don’t like the Wellbutrin. In the meantime, without the estrogen and the Effexor (and taking Crestor in the morning) you should see a big improvement in your RLS. Trazodone is fine, stick with that baby, and Xanax is fine. The Metformin is a tough one. It’s great for type 2 diabetes and not one you can easily switch out. Btw, did your RLS symptoms possibly coincide with the start of the Metformin?

I don’t recommend stopping the dopamine “agonists” until you’ve undertaken the above steps. I know they’re not helping you and I somehow doubt they down-regulated your dopamine receptors all that much, because I believe this evil tendency was thwarted by all the dopamine “antagonists” you were taking simultaneously. Get it…antagonists (the painful good guys) hold the agonists (the feel good bad guys) at bay. As a matter of fact, you’re ingesting so much of the antagonists, it seems taking the agonists should be like whistling in the wind? Did they ever help you? Still, the recommended order of things is to wean off the antagonists before you wean off the agonists.

For relief, I personally take 50mg of ferrous bisglycinate on an empty stomach about two hours before bed. It relieves my RLS in one hour for one night. The reason is too complicated to get into at this point. But if you truly are in the mood to experiment and as long as you’re taking iron, I recommend taking your iron this exact way. It should help that very first night. If not, take the iron however your doctor recommends. Muchas suerte!

[MCM1717 in reply to DesertOasis]

Thank you for that information. The explanation was extremely helpful. I'm going to discuss your reply with the doctor and then go from there.

[MCM1717 in reply to DesertOasis]

BTW, I basically stopped taking the Requip and Mirapex about 3 days ago and the RLS symptoms have already improved.

[SueJohnson in reply to MCM1717]

That's great !

[Wanted-sleep]

BCP157

[MCM1717]

Last night was the worst night I've had so far. I was totally exhausted but my legs would not allow me to rest. I ended up taking 5 different medications and going for a 2 mile walk in middle of the night. I finally fell asleep at 3 and slept until 8. I started with some THC and then added Xanax, Requip, Magnesium, CBD and finally Klonopin. I was in a desperate situation and I didn't know what else to do. I feel like a walking zombie now. This situation is really affecting my mental health and I don't know where to go from here.

[MCM1717]

I also took Trazadone last night.

[MCM1717]

Has anyone heard of a supplement called Seratame?