Pregabalin

[Marilynn]

Hi. Was sent an email asking if I had any advice about taking Pregabalin for RLS. Sadly, although I've been taking it now for a few years I struggle with it. To be fair at first it worked like a dream but after a while although things were better and still are to a degree but I still struggle with it. The worst thing for me is the side effects. I get a very numb feeling in my feet and sometimes find it difficult to stand up because I can't feel my feet properly. Also I find I shake quite a bit and often feel dizzy with the result that I've fallen a few times. As I'll be 75 next month this is not good as you can imagine. So at the moment I'm trying to get off them. Though what I could take instead I've no idea. There's also the increase in appetite which for me isn't good. All that being said it might be different for others. Let's hope so. Sorry I can't really be a help. I'm hoping I can find something which will be ok for me but I'm not holding my breath because I think I've tried most things over the years.

[SueJohnson]

You might want to try switching to gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Multiply the pregabalin amount by 6 to get the correct dose. 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. If you take magnesium don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you do decide to come off the pregabalin, do so very slowly to avoid withdrawal effects. If you do it slowly enough you won't have any. Then your next option would be a low dose opioid.

[SueJohnson]

Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If you haven't. when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. 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 advice.

[SueJohnson]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, 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, 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, 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, using a standing desk, listening to music, meditation and yoga.

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.

[wantokporo]

Google high glutamate foods and eliminate them. Also,I followed Sue's math (6 times to change to gabapentin from pregabalin ). Dr. Said I could do the switch using 4 times the amount. I wish I had done that.

[SueJohnson in reply to wantokporo]

If you had multiplied it by 4 you would not have been getting the equivalent dose and might have suffered from withdrawal as one should always reduce very slowly to avoid withdrawal effects. If you want you could do that and see if a lesser amount would still work.

[Marilynn]

Hi wantokporo. What makes you wish you'd gone to gabapentine and why didn't you? Just curious as to what you were thinking. I might see if it might work for me.

[wantokporo]

I have daytime sedation on pregabalin but have been able to reduce the amount to 100mg. and with being careful about food it's not so bad (also I drink green tea in the afternoon without problems). I have read that green tea reduces glutamate.