After the daily torture of RLS my Neurologist increased my Gabipentin to 400 mg in the evening and Ropinerole 2mg at noon and 2 mg in the evening I haven’t suffered day or night for 3 days. I don’t want to jinx it but I wanted to share!
I hope I finally have resolution because I’d rather amputate my legs knee down than deal with this for ever.
How much ropinirole were you on before it was increased?
If you had to increase it and you have symptoms other than at night you are 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. The gabapentin won't help you while you are on ropinirole.
Ropinirole (requip), pramipexole (Mirapex) and the Neupro (rotigotine) patch are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them 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 you need to switch to the regular ropinirole because the slow releases ones can't be cut if needed.
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.
On the gabapentin the beginning dose is usually 300 mg gabapentin . Normally you would start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks and your withdrawal symptoms have settled. After that 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. 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 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 ."
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 or antacids 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 a doctor should do 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 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 ferritin and transferrin saturation (TSAT) numbers and reply back here with them. 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...
Unfortunately another neurologist not up-to-date on latest research and treatment guidelines! It's great that you're feeling good at present, but the likelihood is that the ropinirole is already making RLS worse and *will* make things even worse in time. The neurologist needs to read this :
aasm.org/summary-of-new-cli...
Sue has laid it all out in her reply: it won't be easy, but you do need to come off the ropinirole to get long term relief.
Thank you!
Oh my word. Yet another doctor who doesn't know anything about RLS.Why are you on 4mg Ropinirole and 400mg gabapentin?
Why did this doctor add gabapentin and increase Ropinirole?
Ropinirole WILL severely worsen your RLS and you need to get off it.
No expert will prescribe these dangerous drugs nowadays.
They cause RLS to become more severe (augmentation) and they cause high rates of Impulse Control Disorder.
Follow SueJohnson advice & get off Ropinirole NOW.
These drugs are miraculous at first & when you increase the dose. Then they turn on you.
Augmentation and withdrawal are hellish.
Find a good doctor near you to get you off Ropinirole.
I told him that people say that and he assured me it’s not true. For what it’s worth. I’ll keep reading advice on this site and most likely let him know I want off of it.
Wow. Still trying to cover his back.Tell him to read the Mayo Clinic Algorithm and the new AASM guidance.
He is so out of date & has condemned you to further suffering.
If you were here in the UK I'd refer you to a lawyer who wants to bring a legal test case against UK doctors for failure to treat RLS patients properly.
As US research & treatment has changed over the last 4 years - you should also consider legal action for medical negligence.
Who is your doctor?
Thanks for sharing!
You are already jinxed. Or Banjaxed as we do say in Ireland.
Beyond belief, what your neurologist is putting you through.
You need to lawyer up as they say , in the US of A.
Read the advice given here carefully and go with it or you'll be putting a chainsaw to your legs..
Good luck.
If you tell me what city and state you live in I may be able to give you the name of a knowledgeable doctor.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen without progesterone and sometimes even with it, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin although it doesn't for all, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
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.
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 have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
By the way it would really help us to give you advice if you would indicate on your profile what your gender is and any other health conditions you have.
Buprenorphine not working 
ropinirole for travel?
what could be triggering sudden onset of RLS / augmentation, evening and night?
Gabapentin Weight Gain
Anyone using Neupro patch for part of the day?
