Hi
New to this forum and RLS. Insomnia is crippling me and affecting everything from weight gain to cognitive abilities. I am desperately seeking sleep. GP has prescribed Quinine but little affect. Also on iron tablets, B12, Vit D, Magnesium. Next stop Ropinole. I’m scared to take this as there appears to be so many negative stories including weight gain and nausea. Any advice??!
Change your doctor. He must have qualified in early 20th century.Quinine has been banned for RLS for years now. And can cause heart attacks.
You are so right to avoid Ropinerol or any other dopamine agonist.such as Pramipexol or rotigogene etc.
Read any of Sue Johnson's replies giving the protocols for treating RLS.
Also a very good article was referenced a few posts ago. It is excellent and sets out the whole way to treat RLS.
Your instincts are superb. Keep going.
And good luck.
thanks so much
Welcome to the forum. You will find lots of helpful advice here. The first is do not take ropinirole !!! It is a dopamine agonist and to 70% of people on it will develop augmentation which believe me you don't want and then you will have to come off it and it can be hell to do so. And the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin won't work. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.
thank you Sue. I will try to update that. I am female and live in UK
Quinine doesn't help RLS as you have found out and it can even be dangerous to take. I suggest you stop it.
You say you are on iron tablets. Have you had your ferritin tested? If so what was it?
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, estrogen, 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, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
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.
perhaps worth mentioning that my RLS is entirely nocturnal- usually get 1-3 hours sleep and then it’s constant all night. Eases off in the morning
Hi, I take gabapentin for rls it is completely under control plus I find it helps me sleep at night too
thank you. Are there any unpleasant side effects??
Not for me, but everyone is different. I think sometimes it can make you a bit groggy in the morning
I have started taking cbd oil and it is working for me so it is worth giving it a try
Presumably you have been prescibed quininw because it has mild anti inflammatory properties and RLS is mostly caused by inflammation of the nerves. In my opinion this is backwards thinking and what you should be doing is reducing the systemic inflammation caused by foods. The foods most likely to be causing the inflammation are refined sugars and starches (including bread and other baked foods) along with refined seed oils. Cutting out refined sugars and starches will help to reduce weight and improve your sleep as the resulting high blood sugar leads to high levels of insulin which drive the cells to consume the blood sugar and keep your brain highly active at night when most of your muscles are inactive.
I have eliminated my RLS by avoiding all processed food and using only olive oil, coconut oil or animal fats for cooking (olive oil also has anti inflammatory properties).
fairly good diet. Pescatarian. No alcohol. Non smoker. I do eat bread though and find RLS is worse if I eat later in the evening. I could do better in refined sugars. Always use olive oil and blood sugars are healthy. I’ve heard that intermittent fasting is good for calming inflammation
Wheat is particularly bad because the gluten causes leaky gut which speeds up absorption of the starch which metabolises into blood sugar. By keeping my carbohydrate input to a minimum I find it no problem to keep my eting to an eight hour window. I have my evening meal around six to seven and the only thing I have after that is green tea wich has anti inflammatory properties.
I think this will work for me. Is a Mediterranean diet optimum for this condition. Trying to do what I can before prescription medication
My diet works for me without any meds, I've been able to completely eliminate my rls by concetraiting on minimising my systemic inflammation. The Mediterranean diet gos part way.
hi Eryl it’s really good news that you have been able to cure your rls by diet is there a book you could recommend or diet plan I could follow
Not specifically as an RLS treatment but as ageneral health and anti diabetes diet which will go a long way to reducing inflammation the book called 'The Pioppi Diet' (a more rigorous version of the Mediterrenean diet) by Dr Aseem Malhotra. (an NHS consultant cardiologist).
When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. 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.
As I mentioned above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex) unless there is some special reason s/he feels you need it.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). 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. 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) daily." 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).
By the way gabapentin and pregabalin help with insomnia.
thank you so much for all this information
I am on Oxycodone for restlessness but for sleep I take a 100 mg capsule of CBD oil and a 25mg Delta 8 THC Indica (not Sativa) gummy. I still wake up but fall back to sleep. Hope this helps.
Change doctor asap. Quinine is for CRAMPS!!!!!Not surprised as RLS isn't taught at ANY stage in medical training.
Do NOT agree to Ropinirole. It WILL worsen the disease in time & experts believe these drugs permanently damage brain dopamine receptors.
Use this opportunity to educate your GP and ask him to look at RLS-UK website and the Mayo Clinic Algorithm for RLS treatment.
Treatment involves
1. Get full panel fasting blood tests. Serum iron, serum ferritin, transferrin and percentage transferrin saturation. Raise serum ferritin above 100, preferably 200 by pills every other night or iron infusion.
2. Review/replace trigger meds such as anti histamines, anti depressants, statins, beta blockers, PPI meds.
3. If 1 & 2 don't improve RLS, prescribe gabapentin or pregabalin at NIGHT only. Starting doses and times are on RLSUK website.
4. If 3 doesn't work after 2 or 3 months, prescribe a low dose, long lasting opioid.
If the medical profession were taught RLS properly, dopamine agonists like Ropinirole, Pramipexole and the Neupro patch would never be prescribed ( except to the tiny minority who don't respond to any other treatment.)
Sadly NICE and NHS guidance are outdated and have been not been reviewed to include the latest best treatment written by the world's top experts, as set out in the Mayo algorithm. Read and research all you can, as the more you learn about the disease, the better the treatment you will receive.
much appreciated- great advice. I am so grateful for this forum
Did you have vit B12 and folate (B9) fully tested before starting B vits? RLS has many potential causes and contributory factors, B12 deficiency being one of them. And Gabapentin will deplete B12 and folate over time, so you need to be sure that they are not contributory and then be aware of the potential for that changing. Unfortunately there is no single reliable test to rule out deficiency, testing is often not done at all (especially the extended testing needed) and supplementing prior to testing makes a difficult to spot deficiency even harder to see in the blood results. Best wishes
Hello careerSquirrel. Welcome to this fabulous forum. You will learn a great deal about RLS from these wonderful members. My suggestion is DO NOT take the ropinerole or any other dopamine agonists. Dopamine agonists ruined my life, permanently. Wishing you the best!
I am sorry to hear that. This seems to be a consistent message from everyone
Has anyone successfully weaned off DA meds and feeling ok
Help with a med name please
breakthrough with meds and Rls
Meds after augmenting
