Gabapentin Not Working

[Sidscrat]

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.

[SueJohnson]

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.

[Joolsg]

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.