I am currently taking 1800mg of gabapentin but I need more help. I take them 6:30, 8:30 and 10:30.
My problem being I can get quite bad restless legs starting earlier in the day, 4pm or earlier which will carry on up to bed time and beyond.
I do often supplement them with cocodamol but that doesn't really help much
If I swap to pregabalin I would probably take 1500 twice a day which is about the same as I'm on now. If I increase it by one tablet It would be the equivalent of going up by 900mg in one go, I don't know if that is OK
Anyone got any advice on swapping to Pregabalin or increasing gabapentin, I will also have to convince my doctor of the change
Thanks
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My personal experience is that pregabalin is so much easier to take as you don’t have to space them out like gabapentin. Just take it all 1-2 hours before bedtime (they won’t write that in prescription) So I would recommend changing.
Also a low dose opioid like dihydrocodeine (no paracetamol in it) maybe to take at 4pm? Then the pregabalin later due to the drowsy effect?
I’m on 2700mg of gabapentin, which is the maximum allowable dose under the NHS. With 1800mg I was still getting RLS too, it wasn’t as bad as usual, being a lot more subdued but not enough to sleep. With the 2700mg I’m now getting a good 5 to 6 hrs sleep a night. For info my RLS is rated as very/extremely severe. I had to migrate to gabapentin after being on pramipexole then ramiprole for the last 6yrs, reaching maximum dose on both with augmentation! Unfortunately my efforts to try educate 2 GPs about RLS and the Mayo Clinic algorithm got dismissed immediately. I kept trying to push for iron infusion as my ferritin level is low at about 38. The GPs don’t understand the link with iron and RLS and the NHS algorithm they use only allows an iron infusion when below 34 if I recall correctly, and that’s for anemia not RLS. This was all about June 2024. Even now on maximum gabapentin I still get RLS which stops me sleeping about 2 or 3 nights a month.
You are probably not taking gabapentin the correct way because if you did you would have to start taking it 10 hours before bedtime.
This is the way one should take gabapentin: Take 600 mg 1 to 2 hours before bedtime. Since you need more than 600 mg take 600 mg 4 hours before bedtime as it is not as well absorbed above 600 mg. Since you need more than 1200 mg take the extra 6 hours before bedtime etc. After one gets to 1800 mg, one usually switches over to pregabalin which can be taken all in one dose 1 to 2 hours before bedtime. The equivalent dose is 1/6 the gabapentin dose, so for 2700 mg it would be 450 mg.
You can get a private iron infusion for £800. If you tell me where in the UK you live I can tell you where you can get it.
Meanwhile 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 including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, 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.
Most of the diet advice is covered as I have ulcerative colitis so have to be careful with any foods that can cause inflammation. I don’t drink or have any caffeine.
I do take 200mg of ferrous sulphate but I think this probably needs increasing, I’ll have to arrange a blood test to see where I am first
I increased my gabapentin by 200 and it seems to be improving things. I don’t want to have an iron infusion without going through my doctor but I’ll bear it in mind.
as bad as it was it is nothing like it was before I took advice from you when I first joined this site
Thank you Sue for your advice, it’s really appreciated. I was aware of the gabapentin dosages and no more than 600mg every 2hrs, so yes I take them over about 10hrs. It seems to work for me as my RLS would otherwise start early afternoon! Regarding an iron infusion, I live near Camberley in Surrey - I’ve been contemplating this for nearly 2yrs, so perhaps it’s time I try it. I’ve tried many other things that you mention without any affect at all, except potassium seems to reduce the RLS slightly with 4000mg a day. I didn’t intend to hijack this post, I apologise. Hopefully your advice helps others too.
You can get one privately at The Iron Clinuc in Harley Street in London. Contact Professor Toby Richards. Send your iron blood test results, including serum ferritin to him and he will arrange an iron infusion. It costs around £800
When on DAs and during withdrawal and until the symptoms settle it is common to get RLS in the afternoon, but if you have been off the DAs for awhile, this is not common so you may not need it for RLS in the afternoon. You can experiment to find out by asking your doctor to prescribe just three 450 mg pregabalin pills. I bet you will find out you will have no afternoon symptoms.
Meanwhile take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg 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. Take it every day at the same time so it is at least 24 hours apart since when you take it hepcidin is released which prevents iron from being absorbed for up to 24 hours, 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 turmeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours.
It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
Sue’s advice is what you want to follow! My doctor let me self adjust doses and I never did benefit as fully as possible. I’m now in a low dose twice a day, morning and evening, for other neurological problems. All the best.
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