Restless legs medication: I have had... - Restless Legs Syn...

Restless Legs Syndrome

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Restless legs medication

Lin58 profile image
8 Replies

I have had restless legs for many years and was taking mirtazapine but it is no longer working. I have tried pramipexole but have had awful headaches. I’m now having awful insomnia which combined with RL means I am getting 2-3 hours sleep each night. What medications have you used that have helped. Thank you

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Lin58 profile image
Lin58
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SueJohnson profile image
SueJohnson

Have you had your ferritin tested? If not, when you see your doctor ask for a full iron panel. Stop taking any iron supplements 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.

Ask your doctor to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) 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. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin and pregabalin 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 (200 to 300 mg pregabalin)." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin).

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...

For anxiety and insomnia I recommend trazodone which is safe for RLS.

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, eating late at night, 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, 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.

Lin58 profile image
Lin58 in reply toSueJohnson

Oh my goodness thank you so much for all this information. It is so so helpful. The medication I take is Sertraline for anxiety and vitamin d and magnesium.

SueJohnson profile image
SueJohnson in reply toLin58

Sertraline is an SSRI antidepressant and makes RLS worse for most. A safe substitute is trazodone which as I mentioned above also helps anxiety and insomnia.

Grumpies profile image
Grumpies

Hi Lin58 , sorry to hear you are struggling and it sounds like Pramipexole is not the medication for you! . In my case it works fine , no side effects and it keeps RLS under control . As I have said before some medications work for some but not for others , hope you get sorted soon !

Lin58 profile image
Lin58 in reply toGrumpies

Thank you for taking the time to reply

Cather profile image
Cather

I took pramipexole for about 25 years. Most people cannot take it that long before it becomes ineffective, requiring larger and larger doses. I was an exception, but finally I had to get off it. Getting off pramipexole is a nightmare. It took me a full year of insomnia, of horrible rls before some relief set in. During that year, I took 900 mg of gabapentin. I am still on 900 mg of gabapentin. It does help, but I still get rls symptoms most nights and have to get up and walk a little. I can usually sleep from 3 am to 9 am - 6 hours. I do occasionally get 7 hours of sleep. So, my advice: do not take pramipexole if you can possibly avoid it. Try gabapentin and see if that helps. cather

tagaxel profile image
tagaxel

Make sure you withdraw from pramipexole very slowly. It has severe withdrawal symptoms.

Lin58 profile image
Lin58

thank you

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