I was prescribed Ropinirole .25 mg I took that for 4 days and could not handle the side effects. Day 4 was terrible. After reading the posts, it seems as if I am screwed if I don't take any medication for it so I guess I will just have to live with this condition drug free. I was never a pill popper and really do not want to start I do not like the way they make me feel and don't want to become dependent on them. I am prescribed medical marijuana but that only helps for a short time. My legs must know what time it is usually around 10:00 pm it starts. It's usually one leg or the other, not so much both at the same time. I was advised this is genetic as my mother suffered with it. I do Zumba 2 times a week which I thought may help it, but it doesn't. Any suggestions that doesn't involve pills?
At a loss: I was prescribed Ropinirole... - Restless Legs Syn...
At a loss
Welcome to the forum you will find lots of help, support and understanding here.
On the contrary, you are lucky. You don't want ropinirole.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.
When you see your doctor ask 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. 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.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.
Instead 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) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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 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 atHttps://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(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, C, 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
Welcome to the forum: you will get advice here from rls-uk.org and rls.org (the RLS Foundation in the US) members and resources, as well as from forum members around the world.
Avoid dopamine agonists - like pramipexole, ropinirole and rotigotine - like the plague. To try to avoid having to take other drugs to treat RLS:
The first thing if you haven't already done it is to have your serum ferritin and transferrin saturation measured. Read about this from this new RLS-UK link:
rls-uk.org/_files/ugd/b0a19...
Secondly, all sorts of other medications and OTC supplements trigger or exacerbate RLS. Read the Medications To Avoid section about half way down the page (after the medical treatments section) at this link:
Thirdly, while some follow very limited diets, there are some common items that tend to make RLS worse - particularly if consumed in the evening: too much sugar/sugary foods; too much alcohol/caffeine (although some benefit from caffeine 🤷♂️); some - like me - are sensitive to artificial sweeteners in 'diet' foods and drinks, particularly aspartame; some are sensitive to MSG; etc.
And fourthly, some - like me - after addressing the above find that taking magnesium helps. I use magnesium citrate, which can cause bowel problems, but magnesium glycinate is widely available in the US. DONT just take e.g. magnesium oxide which has limited bio-availability and takes a long time to help (if at all).
Good luck!
I take Wellbutrin and Rovastatin
Bupropion (Wellbutrin) is OK, but all statins tend to make RLS worse for many. In my experience atorvastatin is the worst, but I also found rosuvastatin made my RLS worse. Whatever your doctor says, there are alternatives!
Ezetimibe, which works differently from statins in that it inhibits the intestinal absorption of cholesterol, is recommended in the UK if a statin is “inappropriate or not tolerated”. It generally works more slowly than a statin, so may not be suitable for those with very high LDL. It worked for me.
Other alternatives to statins include: bempedoic acid which works by reducing the production of cholesterol in the liver; Nustendi (Nexlizet in the US) which combines ezetimibe with bempedoic acid; fenofibrate (Lipantil, Supralip; Triglide in the US).
The best way to reduce cholesterol (if this is really necessary) may just be to change to a vegan diet. I didn't have the fortitude to try this!
Chris is right that statins make RLS worse.
I am going to repeat some of what Chris gave you but there are a few differences.
Nexlizet 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 and it is available in the US. The others are the same as what Chris gave you. 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.
If you end up taking gabapentin or pregabalin you should be closely monitored as it can raise the bad LDL and lower the good HDL although that is not necessarily a reason not to take it.
If you do decide not to take it there is another alternative I can give you.
Any OTC supplements?
I find there is a big variation in medical cannabis. Dry flower Vaping for me is the best relief as it is quick acting. The purple indica varieties are the most calming for my body and help me to sleep. The cannabis oil is good but takes a few hours to kick in and is milder in effect but longer lasting. What are you taking and how much? You may need to increase your dose as I find it is quite ineffective qt low doses. Cannabis is definitely has one of the least harmful side effects. I always feel fine the next day and after 6 years of use have had no feelings of addiction or cravings. I do occasionally go off for a week or so to reset.
Hello Tree1228
I am new to this awful condition and like you want to avoid any potent medication after a really bad experience with amiprityline ? I get knee jerks every night they start around 9pm .
The following routine is helping me get through without serious drugs : not sitting for long periods , a good walk , stretching exercises early evening , massage before bed , magnesium glycinate 1 hour before bed , two paracetamol and one codeine ( the only drugs I am okay with taking ) at bedtime and my Vpulse machine , which has been indispensable .
I realise we all suffer in different ways and react differently but I am willing to try anything. I would put a dead chicken in my bed if someone suggested it would help !!
I do hope you get a resolution .
My laugh for the day ". I would put a dead chicken in my bed if someone suggested it would help"
…and my goodness we need to laugh !
If you want to be drug free try looking at your diet, some foods can be inflammatory and this inflammation can give rise to RLS. There are lists online of inflammatory foods and tere are vitamins and supplements that can reduce it. By sticking rigorously to the diet I have eliminated my RLS without drugs.
Yes , I have been looking at my diet too . Whilst I have drastically reduced my sugar intake I also need to look into inflammatory foods . If nothing else I’m losing weight ! Thankyou for your advice.
I don't think that most people need to worry about loosing weight as long as they're getting the right nutirition to keep them healthy, we tend to have been influenced by recent body images and if you look at pre war photographs, people werere much thinner but more muscular because they didn't have the convenience of work saving modern appliances.
I agree with Eryl on diet but would also add to try Keto diet as it eliminates sugar which is a trigger for most. Also walking 30 minutes increases dopamine. I also use medical marijuana before bed.
hello tree1228, firstly bad luck on suffering from this condition. Just to add my experience, much of the above advice would have been very bad for me. We(i presume?) don't know what caused your restless legs. Mine struck in the middle of lockdolockdown, and it took 5 days to go from sleeping normally to not at all (the fifth night I slept for about 10 minutes, in two 5 minutes block both after rapid walking around my estate - for me walking or even more aggressive exercise might make it easier to go to sleep but the effects don't last long enough to be a soliton on its own.
For me, I suffer from hydrocephalus, and rls is far more common in people who have had neurosurgery (I have 5 times over my life). We looked into diet and similar, but if your condition is anything like mine, it has zero impact. I started on. 25, and over 3 months built up to 2mg. That has now worked since lockdown.
After about a year, my body decided it didn't like it, and I found myself vomiting every bought before sleep, so I now take a strong anti nausia with the ropinirole. The first one cyclizine want nice and stopped working after a year, and if I want sleep in 15 minutes it didn't work. I now take metoclapramide, which so far works fine.
Ropinirole is not a nice drug, but without it I'm permanently exhausted, and barely sleep at all. Talk to your doctor, I think he upped mine every 2 weeks. Stick with it, let us know how it goes, I hope you get relief soon, I remember how hard it was
I have had RLS for about 40 years!! But it only really became intolerable after a prostate cancer procedure in 2011!. Before that simply performing a leg stretching routine was sufficient to allow me back to best!When I was officially diagnosed with RLS I was prescribed Ropinirole 0.25gm which was increased to 0.5gm. After about 5 years augmentation took over. However I must say and I know we are all different, apart from the trauma of augmentation I had no after effects from Ropinirole. I found myself in hospital around 2016 and I was introduced to Tramadol. To my delight one 50mgTramadol capsule at night was sufficient to relieve the RLS symptoms. I am now on 3 x 50mg capsules each night and usually sleep 7 hours uninterrupted sleep!! I realise that some would say I am addicted to Tramadol and I don't mind admitting at the age of 78 being aficted to something which gives me 7 hours sleep every night!
The sleeping clinic at Guys Hospital ( Dr Murphy) has indicated that Tramadol only starts to be an issue if one takes more than 400mg each day so I have a way to go yet before I may have to rethink the prescription!
Unfortunately, it’s hereditary. My father had it, and it’s more common in women. My sister, my daughter and myself have it. We all have tried ropinirole and have no problem with it. I take .25 mg at about 9 o’clock every night and it lasts through the night for me. It also gets worse as you get older and when I turned 72 that’s when it really got to be a nightly thing. I have tried several other “none pill” things and none of them work. I too hate taking pills, but I will if I have to, if it will get me a good nights sleep. Best of luck to you. BTW, I tried Gabapentin and felt so drugged in the morning that I went back to Ropinirole.
I have had RLS for 50 to 60 years and have tried everything, Should you not want to take pills then over the years I have found hot baths, soaking in them for 50 to 70 mins. I made my baths rather hot. I believe it is the time you spend in the bath which matters. But they must be a good warm temp. If you have heart issues then you may wish to consult your GP.
Welcome to the forum. You will find lots of help, support and understanding here.
What have you tried?
See my reply above to Tree1228.
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