I want to share my personal experience in the hope that it might benefit someone else.
I was prescribed Ropinirole 2mg slow-release and Pramipexole 0.18mg for restless leg syndrome, but they were not very effective. I had rough nights, and at least once or twice a week, I had to take Tramadol 50mg to get some sleep.
In January, I decided to start a diet to lose weight. I reduced my calorie intake, practiced intermittent fasting (16/8), and engaged in light exercise (the 7-minute workout method). Aside from the effective weight loss (10 kg in 3 months), I immediately noticed an immense benefit to my RLS symptoms. I was able to stop taking Tramadol, and the combination of Ropinirole and Pramipexole worked perfectly every single night from day one.
While I still need those prescriptions, I now enjoy peaceful, uninterrupted sleep every night. I know this improvement may not last forever, but the lifestyle changes have significantly improved my quality of life.
Knowing that this advice could help even only one member of this community would make me so happy.
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fazull0
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You have been on this forum for a long time so I assume you are aware that ropinirole and pramipexole are no longer the first line treatment for RLS.
You suffered augmentation once and came off it. Why oh why did you go back on it? And you ignored the advice you quoted from Dr. B.
You said you tried gabapentin and it didn't help. You may not have taken enough or may have taken it the wrong way or may have taken it while on a DA . Can you tell me your experience?
Also there are other medicines that can control your RLS.
Also since a 2 mg slow release tablet is equivalent to taking 2 mg twice a day, it is equivalent to 4 mg which is the maximum amount for ropinirole. Add a .088 pramipexole which is equivalent to ,5 mg ropinirole and and you are taking over the maximum amount.
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin that has iron in it 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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 transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Meanwhile 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, 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.
Good news. But do be aware that dopamine agonists - pramipexole, ropinirole, rotigotine - while being helpful for a time ultimately lead to augmentation for most (and impulse control disorders for some): rls-uk.org/augmentation-reb...
UPDATE: I see that Sue has already posted. Unfortunately, once one has augmented I believe that it is less likely that one can successfully combat RLS by entirely natural means - i.e. without any drugs at all. I have done so, but then I never took any meds for RLS - let alone pramipexole or ropinirole. I know that sufferers only took/take them because doctors prescribed them as first-line treatments, but RLS experts know better now.
Other people including myself have found benefits from diet changes including losing weight, eating less, reducing carbs and sugars and eating earlier so it’s good you are seeing those benefits. Hopefully they will persist if you decide to come off the dopamine agonists which are highly likely to make things worse for you in the long run if you start to experience augmentation.
Thank you for your feedback, I really appreciate your valuable input. Let me address the questions you raised.
I have been changing neurologists frequently here in Denmark for quite some time. I even consulted with the most knowledgeable RLS expert, but they did not provide much assistance. This expert was unwilling to support my requests and kept repeating that I should expect rough nights once or twice a week. Now, I am seeing a more understanding doctor who listens to me and is willing to have open conversations on the subject.
Years ago, when I underwent a full round of blood tests, my ferritin value was 199. When I experienced augmentation, I discussed Gabapentin with my former doctor. I tried 300mg and increased it to 3 tablets per day, but it had no effect whatsoever, like eating candies. Perhaps my body was craving Pramipexole, but eventually, I found relief with Ropinirole. Later, I changed from regular Ropinirole to the extended-release formulation because I was experiencing RLS symptoms during the day. Months later, I reintroduced Pramipexole as an extra medicine because I could not relax and fall asleep in the evenings.
Recently, before discovering the positive effects of my diet, I tried the Neupro patches (2mg), but besides the high cost of the medication, I did not notice any positive effects. Perhaps I am not adept at transitioning between prescriptions, but it is challenging to continue with a new prescription after 3-4 sleepless nights. It is always a relief to revert to what has worked before.
I’m on the same regime but have also cut out sugar and aiming to reduce histamine in anything I eat. This has also helped but still take 4mg of Ropinorole split over 3 doses 2 being just before bedtime.
I am now being switched from Ropinirole to Pregabalin. The augmentation has been difficult but I am glad to be getting off Ropinirole. It made me very sleepy. I was taking 3mgs. at night after suffering for several hours.I am now on 1mg. at night and I take The Pregabalin during the day.
I'm so glad you are doing better! Please be careful about Ropinerole. Eventually Ropinerole will cause augmentation and make it much worse. It takes time for this to happen, but when it does all hell will break loose. I loved Ropinerole for awhile until the augmentation started. It is terrible to wean yourself off of it. Even now, years later, I still have to take .05 mg. The sooner you can find a combination that does not include Ropinerole, the better.Good luck!
A year ago you said you were off ropinirole. Why did you go back on it?
Also you previously said you were on 600 mg gabapentin. I assume this is still the case. 600 mg is a very low dose. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin." I suspect if you increased your gabapentin you wouldn't need any ropinirole. As you said "The sooner you can find a combination that does not include Ropinirole, the better"
I know you have edema and so do I using 1500 mg of gabapentin but it is not a problem for me and I suspect yours wouldn't get any worse if you increase your gabapentin.
increase it by 100 mg 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. Since 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.
If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin 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 .
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin that has iron in it 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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 transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Meanwhile 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, 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.
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