Hi, I’m on Ropinirole 2mg, one to be taken at night. I normally take it straight after my evening meal. Or at 8pm, when I take my other night time medications.
It seems to be working, I’ve been on it a couple of months now. And I’ve only had 2 attacks of RLS.
Last night was one of those times. Once RLS starts (as most of you know) you get the most awful sensation. It’s not exactly pain, but it’s an agonising creeping, aching, crawling, gnawing sort of feeling. And I would do absolutely anything to stop it. My feet, legs and sometimes arms strike out in involuntary jerking.
Now to get to my question. What do you find helps during an attack of RLS? And have you found a way of stopping or alleviating a good RLS attack? Can you help me?
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Jellylegs21
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I'm really sorry to see the GP has put you on Ropinirole. Did he/she warn about Impulse Control Disorder and Augmentation? Both are very common complications of dopamine agonists.
When you posted previously, it was clear you would need expert care because of the many other drugs, including anti depressants and strong opioids you were taking. What drugs and doses are you now taking? Your bio mentioned a very long list but you may not still be taking all of them now.
As SueJohnson advised last time, Ropinirole and Pramipexole are no longer first line treatment because they can quickly cause a severe worsening of RLS ( Augmentation) but most UK GPs are unaware of this.
The link below is from the major GP training company. Even they are now aware that Ropinirole and Pramipexole are not first line treatment any more.
You have used ropinirole successfully for 2 months but are having breakthrough symptoms on 2mg. Do not increase the dose. This will inevitably work for a short time & then start to increase the severity of your RLS. Most experts would advise you to slowly reduce from this drug.
I mentioned last time that you should email Dr. Buchfuhrer, one of the top US experts on RLS.
somno5586@outlook.com
He likes to be addressed in emails as Doctor Buchfuhrer and always asks for no abbreviations to be used but he is very helpful and gives advice for free.
He answers emails quickly and might help identify which of your anti depressant meds could be replaced safely. SSRI and SNRI anti depressants cause or trigger RLS and the safe alternatives recommended by Dr. Buchfuhrer include Wellbutrin and trazodone. Wellbutrin is used in UK to stop smoking and can be prescribed 'off licence'. When you have depression and anxiety it is very important to deal with that first. Can you remember whether you had RLS before starting the anti depressants?
Iron therapy is perhaps not as relevant in your case, because your anti depressant meds are the probable trigger, but you should also get full panel fasting bloods and ensure serum ferritin is above 100, preferably 200. Raising ferritin helps the majority of RLS patients.
I would also see a neurologist with knowledge of RLS who can help replace some of your meds and hopefully help you further. Prof. Matthew Walker at UCL Queen Sq is more knowledgeable than most UK specialists but has a long NHS waiting list. If you can afford it, try to speak to him privately.
In the meantime, if you're getting RLS attacks on Ropinirole, try yoga stretches of the thighs and calves. Hot baths or showers. Compression socks, deep tissue massage gun. But these are all distraction techniques. The root cause has to be addressed.
Hi Jools, thanks for your response, I really appreciate the knowledge and kindness shared here.
No my GP didn’t talk to me about Impulse Control Disorder and Augmentation?
The Medications I’m on are as follows:
1) Linaclotide 290 mcg per day (1 per day)
2) Naloxegol 25 mg per day (1 per day)
3) Sodium Picosulfate 5mg/5ml Oral Solution 5-10 mg per day (Take as needed)
4) Setraline 100mg tablets (1 per day)
5) Omeprazole 20mg (2 a day)
6) Pitzotifen 1.5mg (3 a day)
7) Clenil Modulate 100mcg (2 puffs twice a day)
8) Timodine Cream - Use as needed
9) Buscopan 10mg (Take when required)
10) Movicol - Up to 4 sachets a day
11) Efexor XL 75mg (Take 3 a day)
12) Diazepam 5mg (Use up to 6 a day)
13) Cyclizine 50mg (1 tablet up to 3 a day)
14) Salbutamol 100mcg (1-2 puffs up to 4 times a day)
15) Zapain 30mg/500mg (1 up to 4 times a day)
16) Quetiapine 50mg XL Modified release tablets. (1 tablet four times a day)
17) Quetiapine 200mg (3 tablets in the evening.
18) Evorel Sequi Patches (1 patch twice a week)
19) Ropinirole 500mcg (1 mcg at night)
20) Oxycodone 5mg (take 5mg every 4-6 hours up to 4 times a day)
21) Fentanyl 75mcg/hour transdermal patches
22) Apply 1 transdermal patch every 72 hours
23) Oramorph 5ml up to 4 times a day (only when required, treat as acute medication)
I had my Serum Ferritin measured and it is at 81. (So what do I need from my GP to bolster that?)
I’ve been on antidepressants for around 13 years now (2009). I’ve had some very mild RLS in 2018. Extreme RLS attacks have only started in the last 4 months. And I haven’t had any of my antidepressants changed for many years.
Thanks for the information on the specialists. I will have a look into contacting them.
And thanks for the tips. I’ve got a deep massage gun & some funky compression socks. I’ve been trying to do stretches as most of the problem is in my feet. But I’m living with so many different conditions it’s hard. But I’m trying! And I will have a go of the things you mentioned, thank you so much. Xx
That list of meds is exactly why you need the advice of a really knowledgeable doctor.
You are on 3 anti depressants which all trigger or worsen RLS. You are also on IBS meds and the Omperazole also triggers RLS. The IBS will cause poor absorption and will add to any poor iron absorption. The anti nausea/dizziness drug cycizine also triggers RLS.
If you could safely replace the anti depressants for a suitable RLS safe med that would help enormously but you have to ensure your depression and anxiety is covered. I don't know if trazodone and wellbutrin would suffice.
You could try taking Symprove, an excellent probiotic which might help your IBS and allow you to drop the Omperazole. It's expensive but helps heal leaky gut and IBS.
Try replacing the cyclizine with an alternative anti nausea like zofran or kwells.
The 3 opioids should all actually help your RLS so clearly the anti depressants and IBS and nausea meds are overriding their effect.
All your GP seems to be doing is adding more meds to a very long list and isn't looking at what is causing/triggering your RLS symptoms.
That's why you should push for an appointment with Prof. Walker. Switching some of your meds could make a huge difference.
Normally I would tell you to take ferrous bisglycinate to get your serum ferritin above 100, preferably 200 but as you clearly have opioid induced constipation, IBS and absorption issues, perhaps an IV iron infusion would be better. Prof. Walker could talk you through the options.
You will be a challenging case for any RLS expert and as most GPs know very little about the condition, you clearly need a more holistic, knowledgeable specialist who will look at all your conditions and meds and try to find a balance that treats the most serious condition without worsening the others.
I agree you need an iron infusion since iron infusion for the reasons Joolsg mentioned and because iron is not absorbed as well if your ferritin is above 75. However If you decide not to get an iron infusion, you might take liquid iron 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.
To add to Joolsg's knowledgeable answer - Pizotifen - treats migraine headaches.- is a sedating antihistamine -a safer one for RLS is Tosymra (Sumatriptan, Imitrex). The Omeprazole is probably safe for RLS but it will inhibit the absorption of iron.
I have Sumatriptan on hand, for when a big migraine or cluster headache comes on. But you can only use it so many over a week, or even over a few months.
Joolsg is spot on! Why oh why did you start ropinirole when you were advised against it? I suspect it was your doctor who obviously is not up to date on RLS. That was a huge mistake. Did you read the Mayo Clinic Updated Algorithm on RLS? You need to print out the appropriate sections from it and show it to your doctor. Since you have only been on ropinirole for 2 months, it will be fairly easy to come off it and I strongly advise you to do so. It will be much harder later. Up to 70% of people on it will eventually suffer from augmentation which believe me you don't want because it can be hell to come off it 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.. If you want to know why you should come off it, put augmentation in the search box above and read other people's stories. To come off ropinirole, reduce by .25 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 to increase the dose of the opioid you are taking temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it.
Why oh why did I start Ropinirole? That is a good question. The honest answer is that I’m just about keeping my head above water, with feeling so ill. And being on so many medications. We also lost my Husband’s Father a little while ago, and it’s been really hard.
I should have printed your advice and taken it with me. But my mind was somewhere else. I’m more a less housebound. Most days bed bound. And it’s been like this for years.
So it’s not that I didn’t appreciate all your advice. I just couldn’t take it all in.
I will come off Ropinirole gradually, as I’m only on 2mg, it shouldn’t be too bad. And as you said I could increase my opioids to compensate for coming off Ropinirole.
Speaking to our GP tomorrow and we will see if he is willing to prescribe Gabapentin, for the RLS. Here’s hoping!
I am so sorry for all of your problems. I certainly hope things get better for you. Do check out my previous advice on how to take gabapentin and what not to take with it. And you might want to print out the appropriate sections of the Mayo Clinic Updated Algorithm on RLS to show him as he might be reluctant to have to reduce the ropinirole and start on gabapentin at Https://mayoclinicproceedings.org/a...
UPDATE: Hi Sue, just wanted you to know that I have spoken to my GP, who was very amenable to changing my medication. I have weaned myself off of Ropinirole over a couple of weeks. I’m now on my second week of Gabapentin 100mg 3 times a day. And I’ve only had one evening of RLS since starting the Gabapentin, and that was in the 1st week. So thank you again for your help.
Also, have you switched the medicines you are taking from the ones that make RLS worse to the ones that you were advised are safe for RLS? 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, 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, 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, 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 and yoga. Some of these were also mentioned by Joolsg.
Hi Sue, to change my antidepressants I would need to get my GP to refer me to my Psychiatrist. Which my GP would very do, but I could be waiting for over a year. As there is such a demand for mental health services. It sounds like it’s something I need to do though, if I want to stop the RLS. So I will talk to my GP.
What I don’t understand is how my antidepressants that I’ve been on since 2010 would suddenly cause intermittent RLS in 2018! Any ideas why?
I’m on most of those supplements and I have been using lots of the equipment and distraction methods that you have mentioned.
While Jools and Sue are both of course correct that Ropinirole and Pramipexole should no longer be first line prescriptions for RLS, it's not really entirely your GPs fault.
The NHS still recommends "dopamine agonists Ropinirole, Pramipexole, and Rotigotine skin patches" - although they do warn about impulse control disorder.
And NICE says "drug treatment is an option with either a non-ergot dopamine agonist (pramipexole, ropinirole, or rotigotine), or an alpha-2-delta ligand (pregabalin or gabapentin — both off-label indications)"
So in the light of these recommendations it's to my mind understandable that your GP went with Ropinirole. It's the poor advice from the NHS and NICE that's at the root of this.
So be kind to the GP, but as Sue suggests show them the Mayo Clinic Updated Algorithm - but don't be surprised if they push back quoting NHS advice.
Thanks Chris, I have a fantastic relationship with my NHS GP, which I know doesn’t always happen. But I’ll show him the evidence and I know he will read it. I’m not mad that he prescribed Ropinirole, like you said it’s the NHS & the NICE guidelines that are holding things up.
I don’t know when I ended up in A&E as I was delirious after hours of RLS. They refused to give me even one dose of Gabapentin. Due to the Opioids that I’m on. I won’t be going to A&E about RLS again. People kept looking at me as I jumped out the chair, with all these involuntary jerking movements in my feet, legs & arms. But that’s what RLS looks like. I think they thought I was on drugs, of which I am - loads of them 😂 but probably not the ones they were thinking of. 🤦🏼♀️
I so appreciate all the support and advice that has been shared with me.
Thank you, that is useful to know, as Omeprazole works really well for me. With the amount of other medication I need Omeprazole to help the lining of the stomach and to stop acid reflux. So thanks again.
Hello, when I have RLS at night, what's working for me most of the time is putting my legs for 15 min in a cold bath. It calm down my RLS, if it does'nt work, sometimes I had some walking, like 15 min in the flat, in the middle of the night, I can go back to sleep after.
Once RLS has sent in, nothing makes it stop and your night sleep is trashed. I get out of bed and do deep massages to my calf and quads muscles digging my thumbs in as deep as you can. Walk about and have a decaffeinated drink and read something for an hour. Then try again.
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