I have had RLS for about 20 years and been medicated with Ropinirole 0.50mg twice a day for around 17 years.
In the last year I have noticed that some afternoons I binge eat. I’m not hungry but thé urge is overwhelming.
I wondered if anyone else has noticed anything like this.
Gilly🌸
It sounds like you have ICD - impulse control disorder. Ropinirole is the cause. It means you will want to come off it unless you want to become fat because the urge is very hard to resist.
First off check if you are on the slow release ropinirole . The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.
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 a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The 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.)] Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. 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 1-2 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) 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 (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? This is the first thing that should be done for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor 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. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
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 as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
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.
Thank you for your very detailed advice. I’m not on a slow release dose. I think I will have to see the neurologist as I am not sure I could cope with all the info you have given, but thank you so much for taking the time. 🌸
It's very common. Impulse Control Disorder.Have you spent any money on strange purchases? Impulse buying is also common.
There was a recent post by Switalskis solicitors on ICD.
You should consider legal action within 3 years of becoming aware of the link between Ropinirole and the impulsive behaviour.
These drugs are extremely dangerous and cause ICD AND a severe worsening of the disease, known as Augmentation. Experts believe they cause permanent damage to our dopamine receptors.
For this reason, they are no longer first line treatment amongst experts.
See the RLSUK website for details about augmentation.
You are probably sleeping fine but experiencing more daytime RLS.
As Sue asked, are you on normal Ropinirole or extended release? Why twice a day? Did RLS start to hsppen in.the daytime?.If so, that was the warning that the drug had turned on you and was making it worse.
Your doctor should have advised you to reduce Ropinirole and get off it completely at that stage.
Our advice is to get off it. It will only het worse.
Sadly, UK doctors know zero about the disease or the dangers of dopamine agonists.
There are alternative treatments and meds.
Iron infusions can improve the majority of cases, but are not as effective when dopamine receptors have been damaged by years on Ropinirole.
Read all you can, starting with all posts feom the last few weeks. Join RLS-UK.and read the website, particularly about Ropinirole and dopamine agonists.
Do NOT agree to another dopamine agonist.
Thank you for replying, it’s so kind of you. I take a tablet at 5pm them one at 9pm.
As I have written in my other reply I think I may need to see the neurologist.🌸
But bear in mind most UK neurologists are also not trained in RLS and many are still doling out dopamine agonists. Many simply switch patients to the Rotigitone patch, but that quickly causes the sqme problems.We had a woman on 4 years ago who reported she had started gambling and her RLS was getting worse.
Everyone advised her to get off the dopamine agonists.
She went back to her neurologist who negligently swapped her to a different dopamine agonists. Of course she still gambled but her neurologist completely ignored it.
She came back on here recently and we confirmed the original advice and told her to consult lawyers. There have been hundreds of cases against doctors in the UK for failure to warn about ICD.
Anyway, she said she had chosen to ignore our advice because she believed her neurologist would know more and be a expert. He didn't know anything!
She cannot now bring legal action because she knew 4 years ago that Ropinirole had caused the gambling. You have 3 years to bring a legal claim.
There are only a few UK neurologists who are up to date with the latest studies and research on RLS. So ask in advance if they are aware of the Mayo Clinic Algorithm for treatment of RLS and the new draft guidelines by the American Sleep Academy. If not, be very wary.
Thank you, that’s great advice. There is a Prof in London who gave a great talk at the AGM of RLSUK and I am thinking of seeing him privately 🌸
Professor Walker at Queen Sq. Yes he is generally good and has helped people off dopamine agonists. BUT, he has stated to one patient that he believes Ropinirole up to 2mg does not cause augmentation.
That is absolutely NOT the case. We have lots of patients who have suffered augmentation on lower doses.
So, yes, Prof. Walker is one of the more knowledgeable UK neurologists, BUT, he is still prescribing dopamine agonists. So read all you can, including the Mayo Clinic Algorithm and the latest American Sleep Academy draft guidelines. Knowledge is power.The latest research is CLEAR. These drugs will cause augmentation and ICD at VERY low doses.
Good luck.
To be exact he didn't say that they didn't cause augmentation just that if they did he would look to wean me off them. Dr Jose Thomas in Cardiff seems to be the best one. He does zoom calls but you would need to go private though I did manage to get my medical insurance to cover it.
BTW- I compulsively eat during the night and I am on gabapentin and Pregabalin. They don't cover it and you do anything to try and calm those legs down 🤣
They are known to increase appetite and, if they don't cover the RLS, you're more likely to eat when awake at night.It's common for the gabapentinoids to fail after you've been on dopamine agonists.
Did you get an iron infusion? That might improve your symptoms, otherwise, you should ask for a low dose, long half life opioid ( Buprenorphine or methadone).
I was on 25mg Oxycontin and 150mg pregabalin for 5 years. My RLS was classed as very severe. Every single night I'd be up 2 or 3 times pacing.
I have been RLS free since June '21 when I started 0.4mg Buprenorphine.
Yes I'm getting one but having to wait until after the Marathon in case it interferes with training- Ive got fingers and toes crossed! 🤣🤣
Thank you for that clarification. It is very important.I can now safely recommend him again.
Hopefully, he will soon join the experts in the USA and start to speak out forcefully about the prevalence of augmentation.
Thanks.
Still not good though- he shouldn't really be recommending them!
When I say 'look to wean me off them' , what I meant was that he was recommending then as a second line treatment after gabanoids and then if I augmented, he would look to wean me off them!
Understood. Unfortunately, the Mayo algorithm does effectively place DAs as second line treatment. It doesn't make a statement that they should be banned and only prescribed in end of life scenarios. But, that will happen. The evidence is mounting.
you are not alone. I was on Pramipexole, another DA, and I would eat anything and everything all night. And I started shopping on my phone. Thankfully, I realized it was augmentation and saw the neurologist. I slowly tapered off and it was challenging. Sounds like you are on the right track. Best of luck with your taper. Excellent advice and support here when you need it!!
Hi. I appreciate the info that Sue and Jools shared with you may be hard to take in - but what they said is very very true. I was on Pramipexole for decades and only now having come off it, do I realise the massive problem I was having with impulse control. Ropinirole does the same. There is only one solution and that is to come off it if you value your sanity. It is not easy but I encourage you to do it. You will find massive support here for you so dont be afraid. I bought Kratom to help with the withdrawal - it worked well. I am in the UK too and share more info on where to buy it, if you want to go that way. Don't be afraid - I have done it and you can too. One day you will look back and be so glad you came off it.
Hi there,Yes! I'm so glad you've mentioned this as I didn't make the connection! I find myself not sleeping at night (for various reasons!) And eating my way through a whole pack of cheddar thins, various stuff. I will be more aware of this now. Hopefully we will both combat it!
😊
I've resorted to keeping chocolate, nuts etc in the shed at night 🤣🤣
Welcome to the forum. You will find lots of help, support and understanding here.
If you are not sleeping at night while taking ropinirole you are probably augmenting. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. You are not getting relief at the dose you are on. How much are you taking? Is it 4 mg or more?
Unfortunately that means you need to come off it as things will only get worse. Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin is. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations.
First off check if you are on the slow release ropinirole . The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.
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 a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) (Pregabalin is more expensive than gabapentin in the US.) If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. 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 1-2 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) 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 (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. If not ask your doctor 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. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
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.
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
I have the same thing but I am on Gabapentin, and it happens when I get restless legs last thing at night. If the restless legs are controlled I don’t have any problems. I never had it on any other drugs. Gabapentin reduces restless legs but doesn’t eliminate it so I have to combine it with ferrous sulphate tablets and reduced sugar
How much gabapentin are you taking and when?
I take 600 @ 18:30 600 @ 20:30 and 600 @ 22:30 as far as I know I’ve tried everything started taking Gabapentin in August. It doesn’t work really well but it’s much better than nothing. I tried stopping my ferrous sulphate tablets and after a couple of weeks it was terrible so back on them. Thanks for the enquiry.
And you are having compulsory eating?
What is your ferritin?
What time do you go to bed?
I think it’s about 100
I only have compulsive eating last thing at night if my legs a quite bad, on days when my legs are fairly good I’m ok
If you feel the gabapentin is helping but not enough you could do 1 of 2 things. 1) You could add 100 mg every couple of days at 1630 to see if that helps but I would suggest 2) You might want to try switching to pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose which would be 300 mg. Give it a few days to see if you still have the compulsive eating. If not then increase it by 25 mg every couple of days until it controls your RLS.
If you still have compulsive eating then you probably need to come off it. You need to do so very slowly to avoid withdrawal effects. Reduce by 25 mg pregabalin or 100 - 200 mg gabapentin every 2 weeks. If you do so you will have no withdrawal effects.
Then your option is to take a low dose opioid. I would suggest buprenorphine since it lasts 24 hours as the others except methadone only last 4 to 6 hours and if you don't take them that often you will develop mini withdrawals.
You probably want to get your ferritin even higher perhaps to 200 or 300 since you notice the difference when you stop taking your ferrous sulfate. You probably know this but in case you don't: If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness.of the blood thinners and of the iron so check with your doctor. Otherwise, take your ferrous sulfate (I assume it is 325 mg) 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 or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
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.
.
Thanks, plenty to consider
On the plus side I went caffeine free to see if it affected my restless legs and it cured my migraine, I can’t remember when I last had a headache bad enough to need pain killers
That's great!
Hi, I have been on Ropinirole at a low dose for some years now and it has not been a relief for RLS or insomnia to any large extent, but, I do not want to go back to the days, years of extreme RLS and insomnia.Thank you for this thread of experience and I will very much need a review by my GP or a neurologist, Im in the UK in the south east is there support groups any one knows of,?
I belong to RLS U.K. and I live in Essex. I’m not sure if there is a support group on Facebook.
If it has not relieved your RLS you are probably suffering from augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
So you need to come off it and switch to a drug that controls your RLS as it will only get worse.
First off check if you are on the slow release ropinirole (pramipexole). The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.
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 a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin is. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.) The 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.)] Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. 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 1-2 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) 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 (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. If not ask your doctor 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. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
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, 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.
I’ve been taking ropinirole for RLS for about 20 years too, and I binge eat from time to time. I’m not hungry but I kept eating - biscuits and sweets mainly but whatever is available.
You are obviously suffering from Impulse Control Disorder. You also mentioned a year ago that you had restless arms so you are also suffering from augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. This means you need to come off it as it will only get worse and get on something that will control your RLS.
First off check if you are on the slow release ropinirole (pramipexole). The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.
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 a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin is. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.) The 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.)] Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. 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 1-2 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) 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 (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
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.
I would just add one comment to all the good advice given in this thread. Seeing a neurologist is not a bad idea, but one cannot overstate the importance of seeing the right neurologist. One who is well-informed in the proper treatment of RLS. Otherwise, you risk causing yourself unnecessary suffering and delaying real long term relief from RLS . Unfortunately, I learned this the hard way. If only I had relied more on educating myself with sites like this one and less on my doctors, I might have saved myself many years of sleepless and painful nights.
Best of luck to you Gillyfran. Rivers
When I was on a DA I would binge eat constantly for about 6 months. Night time was especially troublesome. When I say constantly, I mean literally constantly. Every evening I would just shove food in my mouth, one thing after another. My self esteem was at an all time low and I was so embarrassed by my behavior. At that time I had no idea that it was an ICD from the DA. I spent thousands of dollars and a great deal of time on hypnotherapy. After a session, it helped just a little, but overall my eating was out still of control. It wasn’t until I came off of the DA that it ceased. The weight that I gained did come off but it took awhile. I would take the advice from the others and ween off of Ropinirole. Good luck to you!
Hi Gillyfran, I did not gain weight (other that minor weight flucuation) in the 20+ years I was on Ropinerole. But this past summer as I weaned off Ropinerole and started Lyrica, I began gaining weight. In my case it was because I have been having many hours throughout the night when I'm up with RLS, and eating has become a satisfying habit that doesn't require alot of energy/thought when I'm groggy due to lack of sleep. I have quietly cleaned rooms in the basement, done laundry, put away clean dishes from the dishwasher, done yoga/stretching/exercise....but nothing gives me a hit of dopamine like eating a big spoonful of ice cream out of the carton, eating a few dark chocolate covered almonds, concocting delicious granola bars or chocolate syrup with Irish whiskey in the middle of the night!! Fun and satisfying indeed! I've broken the habit a few nights here and there, and at times I've made the healthy choice of eating some soggy leftover salad, limp, overcooked leftover asparagus. But a big spoonful of non fat plain Greek yogurt doesn't give the same high as Hagen Daz Pistacio ice cream! I'm hoping that when I see a new specialist on April 24th, I'll get meds that actually help me sleep better than 2, 3, or 4 hours and 12 less pounds than what I'm been experiencing since last June!
How much lyrica are you taking?
I can take up to 300mg, (six 50 mg capsules). I only take 200mg (4 capsules) because the extra 200mg didn't make any difference. I'm tempted to drop down the dosage to see what happens!
If you do you need to do so very slowly to avoid withdrawal effects. Reduce by 25 mg every 2 weeks. If you do so you will have no withdrawal effects.
It does sound like buprenorphine is your best choice.
Who is the doctor you will be seeing?
Vifian Ray, MD at Marshfield Clinic in Eau Claire, WI. I made an appointment at the beginning of January, when I switched insurance providers due to cost, so now I'm with Marshfield rather than Mayo. April 24th is the soonest they could get me in. I had asked back then if at least they could put me on a waiting list for cancelled appointments; I called today to see how far I moved up in line and the scheduler said, "Oh, you're not on the waiting list." So frustrating...
I researched her and couldn't find out much about her. The best way to find out if she is knowledgeable about RLS is to ask if she follows the Mayo Algorithm.
You say rather than Mayo, are you talking about the Mayo Clinic in Rochester Minnesota? If so what doctor did you see there?
Hi Gillyfran, I did not gain weight (other that minor weight flucuation) in the 20+ years I was on Ropinerole. But this past summer as I weaned off Ropinerole and started Lyrica, I began gaining weight. In my case it was because I have been having many hours throughout the night when I'm up with RLS, and eating has become a satisfying habit that doesn't require alot of energy/thought when I'm groggy due to lack of sleep. I have quietly cleaned rooms in the basement, done laundry, put away clean dishes from the dishwasher, done yoga/stretching/exercise....but nothing gives me a hit of dopamine like eating a big spoonful of ice cream out of the carton, eating a few dark chocolate covered almonds, concocting delicious granola bars or chocolate syrup with Irish whiskey in the middle of the night!! Fun and satisfying indeed! I've broken the habit a few nights here and there, and at times I've made the healthy choice of eating some soggy leftover salad, limp, overcooked leftover asparagus. But a big spoonful of non fat plain Greek yogurt doesn't give the same high as Hagen Daz Pistacio ice cream! I'm hoping that when I see a new specialist on April 24th, I'll get meds that actually help me sleep better than 2, 3, or 4 hours and 12 less pounds than what I'm been experiencing since last June!
Hi Gillyfran, this thread you have started is very interesting and what I see are many similarities that i personally have suffered from in that over eating is/was one and I did this for a period of time where I would literally cook a meal at 2 in the morning, that extreme behavior has passed but even though I can nibble when I get up in the night, I do try very hard only to nibble healthy food and in very small amounts. And in the day I am on a healthy diet as here in the UK the NHS will not undertake routine operations if you are not within your healthy BMI range..WARNING to ALL...
RLS in the legs and arms is the cause of insomnia and medication is the cause of other health issues such as overeating leading to obesity and everything that brings with it, bowel issues and as I am learning from this thread ICD which I have had to some degree. I also find activity whether mental or physical can prevent sleep. So I am very confused as to a course of action and can only experiment but would dearly love to have an NHS consultant who actually helps me and works with me to try, eliminate and understand the route cause of RLS and eliminate the side effects of ineffective medication, supplements, whatever.
leg weakness following RLS bout
Night eating
Distortion in legs
Does rls augmentation go away?
Lower back pain and RLS?
