looking for some advice, I was diagnosed with RLS several years back. Was put on pramaproxile initially and it didn’t agree with me. Have since moved to Gabapentin which started in September last year at 100mg which seemed to help a little but went back in December and doctor moved up to 300mg a day which really made a difference. I know find myself slipping back into nights with RLS, and am thinking of going back to see if he will increase but thinking that maybe he will think I’m just after more drugs. Is this too soon? How quickly does the dosage need to go up and the other thing I worry about is will the increases stop as I don’t want to pump myself with crazy amounts of drugs. On a side note my iron levels are ok as had bloods done to check this.
thanks
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Beginning dose is usually 300 mg gabapentin. Increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1 to 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. 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 at Https://mayoclinicproceedings.org/a...
Hi Sue Johnson, I take about 200mg Gabapentin &Nortrioline, generally it is called as Gabapentin NT , is it different than GABAPENTIN ?? Here the standard packing comes in strips of 400mg x 15 pcs or 100mg x 15pcs , it is a HYdrochloride tabs . I take 2 tabs ,4 PM and another at 5.30 PM. I don't find it as effective. PLease advise
You don't want to take more than 400 mg gabapentin at one time as the effectiveness is actually reduced at doses of more than 600. And they shouldn't be cut so take them 2 hours apart. Can you get plain gabapentin in India?
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When you see your doctor ask 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. 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, 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, 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.
thanks for getting back to me on this so fast Sue. I did have a ferritin panel done and was 118 so guess this is ok, will speak to my doctor to see if I can get an increase as I don’t have any spare to test. Thanks
I repeat this often- took Sue’s (and the Mayo Clinic) advice last year, and switched from Ropinirole to Gabapentin at 600mg x 3 times a day. It’s not perfect, probably 80% effective, but my life is transformed after so many years. Bonus was my doctor has taken the trouble to read the Mayo study, so other patients might benefit. Gabapentin, like other meds won’t be for everyone- it is for me!!!
Hi Strike26, it’s been 4 months now since I have weaned myself off of taking Pramapexil (took me 8 months). I started at .25mg 30 some years ago and they kept upping the dose till it was up to 1.50 mg. I augmented something terrible My augmentation is gone now, thank God and am now on 600 mg of GABA at 8:00 pm and then 300 mg at 10:00. This has been doing fairly well but am starting to feel that I may need to up my dose. Could you tell me what your schedule is for taking yours? Thank you!
Hi- Sue is probably the best to ask . What works for me, is 600mg around 7am (earlier if RLS starts up), same at lunchtime and again early evening. I also take (recommended by my GP) paracetamol 4 times a day, usually with the Gabapentin and late evening, the combination works, but I emphasise for me. It may be, probably will be, different for you. When I first saw this GP, she knew little of RLS, so I gave her the Mayo Clinic report and algorithm (Sue can give you the reference if you need it) which she took the trouble to read and immediately switched me from Ropinirole to Gabapentin-2 years on, 80% relief, I cannot thank her and this site, enough. I hope it works for you, but if not, keep on searching- there will be a solution. Alex
Hi Alex, thank you for your reply and suggestions! Right now things are working pretty good. But just want to be prepared to know what to do if I do start having more symptoms. This site has been invaluable in getting me to this point. My life is soooo much better now since weaning off of prama I can’t thank everyone enough. Gail
Congratulations for getting off pramipexole. Take your 600 mg 1 to 2 hours before bedtime as the peak plasma level is 2 hours. Since you need more than 600 mg take the 300 mg 4 hours before bedtime as it is not as well absorbed above 600 mg. You have it backwards. If you eventually need more than 1200 mg, take the extra 6 hours before bedtime but I doubt you will ever need that much based on how well it has it has worked so far. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Increase your dose by 100 mg every couple of days until you find the dose that completely controls your symptoms.
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 at Https://mayoclinicproceedings.org/a...
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. 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 in a multivitamin that has iron in it 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.
Meanwhile 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, 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.
Sue does give excellent advice as does Jools. I was very worried about taking gabapentin as I don’t want to get addicted to any drugs, prescribed or not. GABA has helped me tremendously. The doctor first prescribed 300mg per day but I was advised by the excellent advice to just take the 300 nightly. I have now cut it back to 200mg every night plus my magnesium in the morning which I find helps. I still wake up two or three times in the night with Rls but feel I can cope with that, rather than taking a higher dose of gabapentin. I am retired so the way I look at is if I have a really bad night I can have an extra hour or two sleep in the morning. I also take vitamin D3 daily in drops form under my tongue.
I decided when suffering terrible attacks, that what helped me opioids and pramipexole, whatever gave me relief and sleep, i would take without a worry, the alternative was worse. It was in print in a medical supplement, that no Uni in UK teaches on RLS. its not even in any medical i ternary of learning
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