I found this wonderful forum after my doctor prescribed Ropinirole for me, while doing some research on that medication. As a result I have some questions that I would really like others’ advice on.
For context, although I have had restless legs on and off most my life, it has never been as bad as it has been for the past 8 weeks where the agitation starts at 11.30 each night and continues until 6 the next morning.
1) I didn’t know about iron therapy until I came across the HealthUnlocked website. I have put in a request to my doctor for the four tests mentioned in the Mayo Clinic’s updated algorithm. Should I hold off taking Ropinirole, with all its possible side effects and risk of augmentation, until I have the results or, as I have been instructed to start on a very small dose to acclimatise me to the drug, should I make a start anyway in case it’s not iron deficiency? (I think that. of all the drugs my doctor could have prescribed, Ropinirole is the best given my other conditions.)
2) When I was sent on a course, 10 years ago, on how to manage Chronic Fatigue Syndrome (which I’ve had for 40 years) we were advised NEVER to sleep during the day. However, I cannot get to sleep between 8 in the evening and 6.30 the next morning but, being retired, I have the opportunity to sleep from 6.30 until noon, so do. Which is better, getting some sleep even though it’s during the day, or gritting my teeth and getting up when most people do? The people running the CFS course kept stressing that the people with the worst health outcomes slept during the day, but my own thoughts are that daytime sleep is better than none.
3) What do other people do during those long, restless sleepless nights? Again because of the CFS management course I’m not watching TV, opening my computer or looking at my phone during those hours, but there’s only so many Sudoku puzzles you can do and most books or podcasts don’t absorb me enough to take my mind off my misery, which brings me to the next question …
4) How do people cope with the sheer misery of this condition???
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Desperate100
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Do not start the ropinirole nor ever take that medicine. It is no longer the first line treatment for RLS as you should have learned from the Mayo Clinic article as up to 70% of people on it will suffer from augmentation which believe me you don't want because it can be hell to get off it and if on it long enough it can damage your dopamine receptors so that gabapentin, which is the first line treatment won't work. There is no need to wait for the full panel iron tests to find out your ferritin, because even if your ferritin is low, it can take up to 3 months to bring it up to over 100 and even then it only helps 60% of people with RLS. Instead ask your doctor to prescribe gabapentin. Beginning dose is usually 300 mg gabapentin. It will take 3 weeks before it is fully effective. After that increase it by 100 mg 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. Most of the side effects of gabapentin 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 daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. On the iron test - Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning as that is when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and you want your transferrin saturation to be between 20 and 45. If your transferrin saturation is OK then if your ferritin is less than 75 take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. 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.
Thank you so much, Sue. The only problem with gabapentin is that it seems to be contra-indicated for people who suffer from depression, and I have been on 20mg a day paroxetine (Seroxat) since 1994. This leaves me in a bit of a dilemma!
I agree with Sue. Do not start Ropinirole. It's no longer first line treatment and doctors should ALWAYS do full panel fasting bloods before prescribing meds. Doctors should also review existing meds as so many trigger or worsen RLS, including SSRI, SNRI & tricyclical anti depressants, sedating anti histamines, statins, beta blockers and PPI gastric meds.As you're on paroxetine, that will trigger and worsen your RLS so discuss whether the RLS friendly meds might help. Trazodone and wellbutrin are safe but experts stress that you need to ensure the depression is under control.
The only other meds apart from dopamine agonists and pregabalin and gabapentin are low dose opioids, and they too can cause anxiety or depression.
However, raising serum ferritin above 100, preferably 200 resolves the majority of RLS so that should be your first priority.
Iron infusions raise levels much more quickly so you could ask your doctor to consider this before drugs.
Paroxetine is known to make RLS worse. I would suggest you switch to trazodone or Wellbutrin which are both safe for RLS. Also, I have never heard that gabapentin is contraindicated for people with depression, certainly not for treated depression. For those who have thought about suicide - yes. Lots of people with RLS take both gabapentin and anti-depressants.
I am also on Atorvastatin; plus Ramipril, Imdapamide and Amiloride for blood pressure; Verapamil for atrial fibrillation and Apixaban for blood thinning. Do you know if any of these might also be aggravating my RLS condition please? I've read that stations can do so, but is it all statins?
Yes unfortunately, all statins make RLS worse. So do all diuretics like Indapamide which I assume is what you meant. Ramipril, Apixaban and Amiloride are probably OK. Verapamil which is a calcium channel blocker is known to make RLS worse in most as do all calcium channel blockers.
Regarding sleep you absolutely do need to sleep so daytime is better than not at all. My RLS normally reduces around 5am so I never get up before 8 (unless I’m having a bad night) and regularly sleep over till 9 or 10. I don’t like losing the start of the day, but we have to sleep. We tend to struggle on sleep-deprived but it takes just one good night (very rare these days) to realise what a difference sleep makes. I am so much more alive, motivated energetic. At night I still try to sleep and when I’m woken up by RLS I do practical things that make me move like small housework jobs or all the things I forgot to do in the day and normally after 15 minutes or so I can get back to sleep although it’s very variable how long it lasts. I used to think coffee had no effect but increasingly I’m finding real coffee after midday also keeps me awake. It sounds like you are well aware of good sleep discipline and techniques so keep doing those.
I agree that any sleep is better than none. They say that daytime naps can interfere with the ability to fall asleep at night, but I haven't found that to be true. I suspect that researchers came to this conclusion while studying people with short term insomnia, not RLS, and the advice keeps getting repeated as gospel. Go with what works for you. Try some stretching at night. Sometimes it gives temporary relief. Definitely don't start ropinirole!
Gosh - I know that one! I used to console myself for how miserable I felt with chocolate and Pringles. I've managed to restrain myself now to one rich tea biscuit per night, but I'm continually thinking of chocolate and crisps.
My rls is so severe it goes up Into my shoulders. Whole body rls that has caused me to become suicidal several times. Until I found Mirapex. You want Mirapex. Ropenerole gave me strange feelings in my body. Mirapex. It took me until 48 yrs old to find this medication and I thank God for it everyday.
I see people disagree with me but you have to remember we are all different. But I can say 💯 that it's the ONLY thing that's worked for me and zero side effects. Also called Pramapexole. If your rls is making you miserable, it's worth a try. I've been on it 4 years. ZERO ISSUES
When your RLS is so bad that it causes suicidal contemplating and it goes through your entire body, 💯, Mirapex works miracles that only God could give. Ive had no issues, it's the only successful treatment I have found. I would be walking the floor when my husband went to bed, and still going up and down stairs, crying, when he woke up next day for work. Without being able to sit down or lay down, I'd do this for days on end. I've punched myself in legs and arms to cause pain so I wouldn't feel the RLS. I had to make sure they were all xo covered so my husband didn't get accused of beating me. That's how bad mine was until age 45 and I'm 49 now. Hell yes I would 💯 recommend Mirapex!!!!
I believe I said in another reply to you that I was glad it worked for you. My point was not to recommend Mirapex to others when up to 70% of people will suffer augmentation on it and if so it can be hell to come off it. And if they are on it long enough their dopamine receptors can become damaged and then what is now the first line treatment for RLS which is gabapentin will no longer work. Gabapentin is the one to try first which doesn't have that same risk. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment.
I wouldn’t recommend a dopamine agonists to my worst enemy because when it’s time to come off of it is when the nightmare truly begins. The depression and anxiety that I experienced was unbearable! I’m actually astonished that I made it through and I’m here to say how horrible these drugs are. According to my neurologist, I have permanent brain damage from the high dose DA that I was taking for years.
Look for a liquid iron - but check the amount of elemental iron. You want 65 mg. You may have to take more than the usual dose to get it. Let us know if you find something since I don't have access to amazon in the UK. The most I have found is 18 mg.
What do I do during these long nights? walk. Although you shouldn’t have to do this night after night. Talk to your neurologist about other medications. I would not recommend taking the ropinirole or any other dopamine agonists!! Also an anti inflammatory diet has helped me quite a bit. It has not eliminated my symptoms, but I have found that the severity is less. Also, my suggestion would be to sleep whenever you can.
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