I suffer from severe RLS. It started around 2010, once or twice a week. Within the past two years it has gotten worse. Now it is every night and sometimes starts when I am just sitting in the early evening. The first medication I was prescribed was Ropinirole. It reduced the symptoms for about three days. I kept taking it with no relief. Then it seemed to make me desire more of it. So, like an idiot I took 1 and a half. Worked for a few days. Kept with it, then the same desire hit again. Now up to two. It made me feel sick and just wanting to lie down. When I would lie down, in about 20 minutes the severe movement of both legs started. A few times so bad I threw my lower back out. I was also prescribed gabapentin. No results. I then found this forum and started reading. There was a post about ropinirole, and its side effects. They were correct. I had withdraws coming off it. It was terrible. No sleep, terrible RLS, getting upset. I couldn't take it. I went to the floor one night and was on my belly. The symptoms seemed to relax. I took my meds the next night and tried the floor on my belly again. Same results. Then I tried the bed, and it still relaxed my symptoms of RLS. Years ago I was prescribed lamotrigine for depression. One post on here said it caused RLS. After talking with my Dr, he had me ween off it and the ropinirole. Now I only tale three Gabapentin. Two at supper. One at bedtime with one trazadone. Being on my belly and these meds, I fall asleep quickly, and soundly. If I roll over, in a few minutes, the RLS starts to come back. Even on my side it starts up. My calves are still constantly tight and never release. Painful most of the time, I deal with it now, just being able to sleep is a big step. At times I apply Theraworks, a muscle calming foam, on my calves. It helps also. Hopefully one day a cure will be found. Having to be on my belly almost tells me there is something wrong in my spine. I would never wish RLS on anyone. It is a severe thing to have and gets extremely depressing with no sleep. Prayers for the family's that have lost loved ones to RLS.
Ropinirole should be banned. - Restless Legs Syn...
Ropinirole should be banned.
How many mg in each gabapentin and how long have you been taking it?
300 mg each. 2 at supper and one with a 50 mg trazodone before bed. I firmly believe sleeping on my belly helps the most. If I am on my back or side I get the symptoms but not as bad.
Been on it for 6 months.
Unless you have symptoms between supper and bedtime, there is no reason to take i then and in any case the larger amount should be take later. You are not taking enough gabapentin which is why you sill get RLS when you roll over. Assuming you have been off ropinirole for awhile and any withdrawal symptoms from that have settled the normal advice is as follows. Take it 1 to 2 hours before bedtime rather than at bedtime. Ask your doctor for 100 mg capsules and increase it by 100 mg every couple of days until you find the dose that works for you. 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin " If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason. 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 isn't or s/he would never have prescribed ropinirole. atHttps://mayoclinicproceedings.org/a...
When you see your doctor ask for a full iron panel. Stop taking any iron supplements 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. 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.
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, eating late at night, 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, 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.
I also take 4 x 14mg of iron before bed and have had 2 full.nights sleep.without symptoms. 2 x 300mg gabapentin at 6pm
2 x 300 at 8pm
4 x iron at 10p.pm
Has done the trickfor me.
You guys are invaluable
Hi Baz, I’m not sure you need the Gabapentin? What do you think? It seemed to do nothing for you before the iron. I think your receptors are in pretty darn good shape via all the exercise you do (which raises hepcidin and lowers iron & temporarily provokes symptoms but in the long run is great for receptors) and sounds like you’ve done restricted calories via lack of appetite which also up-regulates receptors. I think the Citalopram is what provoked the worsening symptoms and now that you’re off that drug you should be in good shape. You’re young, you have to think about how long you want to be on Gabapentin. Something to think about after a few weeks of peaceful nights.
As awful as your RLS symptoms were while on the SSRI, you did nothing but good to your D2 receptors. I’ve been wondering about this out loud for years on here, but just now found the proof:
pubmed.ncbi.nlm.nih.gov/108...
OK, rhankyou for this , so just the magnesium and iron??? Also I don't do restrictive calories ,I'm quite disciplined in.balance and tend to be yogurt ,dark green veg, quorn,rice , vegetarian which doesn't help the iron levels
Maybe try dropping the first evening dose. See what happens. I just edited my post to you with a really exciting article.
The only other thing I use is a muscle calming foam, just before getting into bed. It is not like Ben Gay. I take a 50+ multivitamin along with 1000mg of vitamin C. I hate taking medicines, as long as what I am taking and sleeping on my belly allows me to sleep, I will most likely stay where I am until I get into my neurologist. I still feel it is something in my spine now, just from the feeling I get in my back at different positions and when the RLS starts. I get RLS anytime I lie down on my back and side, even a daytime nap. After dinner I would get RLS sometimes sitting, relaxing, watching tv. That has subsided taking the Gabapentin around supper time. Taking more would probably help the symptoms, but I am looking for the cause, not overloading on meds. I believe increasing the 900mg I am taking now, especially doubling it to 1800mg is just way too much. I also refuse to take any type of narcotic or opioid.
OK - understood. Let us know what the neurologist says. Yes back problems can cause or at least exacerbate RLS. Unfortunately they are rarely easy to fix.
Hi, I take 12000 gabapentin...4 x 14mg bisglycinate before bed and sleep and was reluctant until I hit rock bottom a d thought ill try anything. Anything at all , thos advise paid Dividens for me ....I.was asleep within the 1st night .Sending healing for your journey.
Hoping you still slept well without that first dose of Gabapentin 🫣
Not reduced yet, I'm enjoying my sleep so much.I'm going to try reducing from Monday, I have 3 days training course so need to be awake !!!!!!
I tried reducing by 2 last night and it aggravated my legs so I had to get up take the other 2 and a valarian....Will stick to the winning formula for now .I have directed alot of people to you on here, hoping you don't mind .?!?
Interesting! I would have bet money that cutting back the Gabapentin would have made no difference. And I would have lost that money. Yes, wait. Wait to try again until you’re about 3 to 6 months out from the DA, maybe?
Hear, hear! All dopamine agonists should be banned and reserved for those who have failed every other med, iron infusions etc.I am encouraged that more and more enlightened doctors and neurologists here in the UK and in the USA are no longer prescribing them, even for Parkinson's.
I sleep on my side - but also noticed a difference between sleeping positions, if I sleep on my left side symptoms seem to come back more quickly than on the right side.
That is so weird, I have the same issue. Thought it must be in my head! If I lay fetal position on my left side legs start to get that "rls" feeling. Right side, flat on back, or on tummy, no problem. Just started a few months ago.Strange...
I've been on Ropinirole for 20 years. As you say, it's a horrible drug. Doesn't really work for RLS but has mad side effects. If I forget to take it I go into a kind of zombie state in which I am kind of sleepwalking. One time I broke my ankle from falling whilst in such a state. That's from just forgetting to take it "on time". Literally I have a window of a couple of hours or I will have dreadful zombie-like side effects.
So why don't you come off it and go on something that will help you? We can help.
That is the feeling I was constantly having. If you go off of it, DO NOT JUST STOP, keep lowering your dose. I ran out during that and suddenly stopping started a nasty withdraw. Talk to your Dr.
Amen. Dopamine agonist of any flavor should never be prescribed for restless leg.
I also get relief by laying on my belly.
And sometimes I can feel a muscle deep inside going into spasms.
it got me thinking along the same lines as you. they problem may be a structural problem. and perhaps it is a case of nerve impignment.
anyway, over the years I had a lot of body work done and so I'm very familar with it. so I started working on the soft tissues of my abdomen and torso and found it to be full of knotted tissues that was not moving freely.
As I slowly release some of this tissue I often get bought of intense emotion. which lead me to start understanding that I was dealing with a lot of stored emotions and trauma from childhood.
Anyway, I am still dealing with RLS but it is much less severe, and I find I can stop it with some movement, breathwork and message or work on some of that tissue that is still stuck. its a work in progress.
Oh, I also had a simialr nightmare experince with ropinerol. and the doctor's don't properly inform you of the chance of withdrawal and what that entails. It is terrible!
Ropinirole works for some people and not for others I'm finding out. Ihave been on Ropinirole for a few years now and suffered faith the same issues. However I saw a specialist about 6 months ago and found out that my Doctor had been prescribing me 2mg of a quick release Ropinirole. I was immediately put on 6mg slow release and this has helped no end. It took a few days to get into my system but I have a better night sleep now. I hope you find some relief as I know how absolutely unbearable it is.
Of course it worked better because you have in effect tripled your dose.
That's great. It gave me terrible side effects that did not go away, dizziness, severe lightheadedness, just felt the need to lie down. Within 20 minutes the legs were both going. Had to get up and walk, still tired, but unable to sit or lie down without the legs moving.
Absolutely agree with you 100 % l suffer restless legs terribly have done most of my life from early 20s l am now in my 70s and it is a life destroying disease. I'm sure the medical profession do not realise the affects it has on a person, life. Trying to find the right medication that will help you , as everyone is different and what works for one may not work for another. You cannot describe to someone how it feels to have restless legs, you have to actually have it to know how bad it .
Looking over your previous replies I see you were weaning off sifrol. Have you stopped and if so how long ago?
I also see you were taking madopar which contains levodopa which acts in the same way as ropinirole and sifrol. Are you still on that? You were on a huge amount. The accepted maximum amount is .5 mg and you were on three times that.
I also see that you were on150 mg of pregabalin twice a day. It won't help you very much while you are on sifrol and madopar.
So let me know if you are still on these and how much you are currently taking and I can give you some advice.
Have you had your ferritin checked? If so, what was it? 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 multivitamins that have iron in them 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.
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, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, 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, 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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in.
I find cbd oil helps me a lot. That’s all I take now
Definitely an option to review. I'm all for not taking prescriptions should it work. Ropinirole gave me one nasty withdraw coming off of it. Lasted over a week with violent RLS, then things got a lot better.
I can only fall asleep by lying on my front as well. That and 300mg gabapentin each evening definitely calms my RLS.
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