I have had RLS for many years at night (maybe since 2009?). I took 0.5mg Ropinirole for several years and got on opiates for pain several years ago and did not need the ropinirole. I ended up getting addicted to the codeine (stupid) so I went through a very long process of getting off that and slowly the RLS returned and that was in September this year. I knew a symptom of opiate withdrawal is RLS so I had a double curse. I started back on the ropinirole and I had not liked it as when I took it at night before bed I felt awful; some side effect. We are Americans living in a 3rd world African country with not very good health care. My doctor (USA) prescribed gabapentin 300mg when we visited in August this year. I found out the ropinirole is not being prescribed due to augmentation. The gabapentin has not worked well. I take it about an hour before bed and am awake several hours later with RLS. I increased to 600mg and take a half an iron pill at night before bed and sometimes I have to take a half iron tablet about 4AM or I wake up with my leg twitching. I have read in several places that anything above 600mg does not absorb so it would be a waste to take anymore and I do not want to be on high doses of anything. Sometimes the gabapentin / iron solution may work and most times it does not and I have to take a ropinirole tablet to get back to sleep. I am off the opiates and my brain is trying to sort out its "new normal" so I would guess this may be part of my issue? I have all but eliminated sugar except for mornings. I am reading and following advice for this but seem to be getting nowhere. My sleep is not that stable anyway and this is aggravating it. The ropinirole is the only thing that really works but it is a ticking time bomb and I do not want to get to the point where augmentation comes in. Just reading on this group I see so many different answers and feel for those who have a worse condition than I do. I just need a good solution.
Gabapentin Not Working: I have had RLS... - Restless Legs Syn...
Gabapentin Not Working
Welcome to the forum. You will find lots of help, support and understanding here.
You need to get off the ropinirole for good. If you are taking it 3 or fewer times a week you can just stop it. If not you will need to reduce slowly.
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. Ask for a prescription of these if needed. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer. 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 and pramipexole and the Neupro patch (Rotigotine) are no longer the first line treatment for RLS. Gabapentin or pregabalin are. (Pregabalin is more expensive than gabapentin in the US.) Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.
Normally you would start gabapentin t 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks and your symptoms have settled. After you are off ropinirole for several weeks increase it by 100 mg every couple of days until you find the dose that works for you.
The reason it hasn't worked for you is that 600 mg is a very low dose.
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.
If you take magnesium even in a multivitamin or magnesium-rich foods, 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 don't take it nor calcium-rich foods within 2 hours for the same reason. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin,"
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. 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 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 on the best iron tablets to take and how to take it.
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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, low potassium. eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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 (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
By the way it would really help us to give you advice if you would indicate on your profile what your gender is.
Hello Sue and thank you for your response. I will cover all I can here for information. I am a male 64 years old. I am from America but live in Uganda serving so our access to some of what you listed is not at all available. My old doctor from many years ago is who put me on ropinirole as it was the recommendation and as I said, in August my new doctor put me on gabapentin and started me at 300mg. I went to 600 since the gabapentin was not working but again I was still in my last stages of tapering off opiates and that also increases RLS. My ropinirole is not slow release so I can split it. I have not been on it every night but if I wake up in the middle of the night and have RLS, I have been taking it. I have been taking the 600mg of gabapentin before bed. I can start taking 1200mg and split it as you suggested. My only concern is that there have been studies and an increased risk of dementia in older patients who start taking gabapentin. I tried cutting back to .25mg ropinirole last night and it worked all night. I have taken no more than .5 in the past. I do take magnesium glycinate in the evening about an hour before the gabapentin and last night I did not. The gabapentin is also good for my sciatica. I had my blood checked but it was only the red blood cell count they did so I will see if I can get the iron panel done. I have been taking a 65mg iron tablet at night (not sure what tablets are best). I cut back to half before bed and was taking half about 3AM-4AM to avoid RLS hitting early in the morning but have not done that for a while. I do not eat much sugar and I avoid it at night nor do I eat meals at night. I had started taking melatonin to sleep and I saw it can make RLS worse so I stopped it last night. I do take trazadone for sleep and have for many years but want to eventually get off it. I am on a good B supplement and take it before as it was prescribed for sciatica. I also have stretching exercises I do and leg massage. Some nights I am fine without ropinirole and just the 600mg of gabapentin but many nights I am not. RLS being a withdrawal symptom of quitting opiates, it has been confusing as to what is the result of the withdrawal and just having RLS. I have been off the opiates for almost 2 weeks. That has interfered in me attempting to figure out what will work. Last night I used only .25 ropinirole and I was fine all night. Since I have not been taking the ropinirole every night I am going to try your suggestion and do my magnesium early and then do gabapentin later as I was taking them close together and the gabapentin 45 minutes before bedtime. I did read the Mayo Clinic document. The list of things that make it worse I do not do except the melatonin and I stopped as I said. Our food supply here is much cleaner than America where we have little processed foods and my wife is a great health cook who makes sure we eat healthy. We have none of the devices here you mentioned including compression socks but we have elastic bandages. Not sure where I should put them though? I take glucosamine for joints, Vitamin, D and CoQ10 and I take those in the morning. Hopefully this gives you more information. Thanks again for your help!
I wouldn't worry about dementia. There is only a 1.5% increased risk over one's normal risk.
Do get your ferritin tested but you can take iron in the meantime.
Take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Also take Lactobacillus plantarum 299v as it also helps its absorption.
Take it every other day as more is absorbed that way, 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.
Since you take magnesium (or magnesium rich foods) or if you take calcium (or calcium rich foods) 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 turmeric as it can interfere with the absorption of iron. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months from your first if your ferritin turns out to be less than 100.
Okay thank you so much!
Hi Sue, My doctor here in Uganda does not know which iron tests to do. Can you give me the specific ones please? Thanks
Ask for a full panel iron test. If this doesn't work just ask for a ferritin test.
Thanks!
Hello Sue. I have been off ropinirole for 3 days (though I was not taking it daily before). I had been at 600mg of gabapentin and I decided to increase to 900 to see if it would improve the RLS issue and it did but waking up after the 2nd night I had bad dizziness and my chest got very tight a pained. I know those can be side effects and I figured I should not have increased by 300 but should have done the 100mg increase. So I will do that. My issue today is that I take Lamotrigine l for bi-polar and today I am really messed up. I feel like I am in a mind bubble and definitely my brain chemistry seems off. This is concerning. What do you know about gabapentin affecting mood disorders or conflicting with that condition. There is no information regarding drug interactions between Lamotrigine and gabapentin but they are both anti-seizure meds. Would taking both medications cause this?
Gabapentin can definitely affect your mood. and side effects like dizziness are common to both. I would check with your doctor.
I agree with SueJohnson. Avoid Ropinirole.And gabapentin 600mg is far too low. You take it in split 600mg doses 2 hours apart to deal with the poor absorption.
I'm sure that inceasing to the average dose will help.
My feeling is that you should have slowly dropped the Ropi and switched your opioid from codeine to low-dose (10mg/day) methadone. Google Dr. Mark J. Buchfuhrer, describe your situation, and ask his advice - he gives it freely.
Hi there! Thanks for your input. I have been off opiates for almost 2 weeks now after a long taper down. I had a specialist guiding me through the process for over a year. We cannot get a lot of drugs here in Uganda where I live (I'm an American serving here) so I had to use long acting morphine and the last stage I was able to get a few buprenorphine patches when we visited the US in August. I had no education at the time on the ropinirole so I would not have known until my American doctor switched me to gabapentin. I had not taken ropinirole for several years while I was on the opiates. I only had to start when I got to the lower taper down of the opiates. Thanks!
Does taking iron close to gabapentin interfer with absorption of gabapentin?
No
Hi Sidscrat,
I came off all meds using neuroplastic techniques with no worsening of symptoms and am now using it to further reduce my symptoms. It takes some work but is cheap, no meds and no side effects. The unlearnyourpain.com website is a good starting point if you’re interested in finding out about it. I wish you well.
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