I've suffered with RLS for about 15 years and was prescribed pramipexole about 12 years ago. As I now know, predictably the symptoms eased but eventually the dosage had to be increased until I reached the maximum which was followed by augmentation. Having discovered RLS-UK and read the advice I approached my g.p. who was sympathetic and willing to consider the society's views. With his help I slowly reduced pramipexole which I finished four weeks ago, he increased my iron sulphate medication and I began to take gabapentin. My ferritin level currently is 106 and the transferrin saturation level is 41%. I am now on 600mg of gabapentin a day, taking 200mg 3 times spread throughout the day. The g.p. said this would help minimise the side effects.
Currently my situation is confusing. The restless isn't as severe as it has been and some nights I do sleep more but usually I have to get up to move about, go into another room. There is no pattern to my nights. I am going to speak to my g.p. again but would like some advice before I do this please.
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Claypot
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Welcome to the forum. You will find lots of help, support and understanding here
Congratulations on getting off pramipexole. I know it wasn't easy.
Unless you are having RLS symptoms during the day you don't need to take it 3 times a day. Doctors prescribe it that way because it is used for neuropathic pain. Take all your gabapentin at night 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 don't take it 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 up-to-date on it at Https://mayoclinicproceedings.org/a...
You might want to try and increase your ferritin more as some think it should be above 200. 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 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. Also take Lactobacillus plantarum 299v as it also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.
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. 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.
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, C, 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.
Thanks for your quick and very detailed response. It's given me more information which will help in my discussion with my G.P. I will update my profile.
I noted you have commented a lot on these forums about gabapentin. I have just started today on 300mg and adding one tablet each day or 2 until on 1800 ( 3 x 600mg). I have nueralgia ( pain in jaw and teeth and seen dentist and not teeth issues). I have read/scanned the the first 10 pages about gabapentin. Do you know of any research or comments about use for general pain and if it can put you in AF as I have had AF and not currently in it. I have also been given amitripyline 10mg but I have seen some comments about AF. I may not take this amitripyline now and discuss again with doctor but I am going to take gabapentin as pain is very bad. I have had cardio versions and I am not in AF but have been often. I am worried that these two could put me back into AF. I have checked clashes and originally I was given caramezine? but decided on gabapentin after weighing up pros and cons as this does not interact as much with rivaroxaban and other meds I take for my heart thanks Matt
Well done for getting off Pramipexole.Unless you have fibromyalgia and neuropathic pain, your GP has prescribed gabapentin incorrectly.
For RLS, you only take it at night.
Also, 600mg is a starting dose.
The average is 1200-1500mg taken in 600mg doses 2 hours apart.
When you reach average dose, you can see if it helps. There's room to increase to 2500-3000, but gabapentin and pregabalin don't work for everyone, especially after years on Pramipexole.
Post again if the higher dose, at night, doesn't cover your RLS.
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