Hubby's RLS: My husbands RLS has... - Restless Legs Syn...

Restless Legs Syndrome

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Hubby's RLS

tiffanie125d profile image
6 Replies

My husbands RLS has increased with age and his recent full knee replacement two years ago. We have been seeing an RLS/Sleep doctor from Johns Hopkins since last November and are on a slow journey to figure out which combinations of meds will help him. He was on 2 Horizant pills when we first saw him and he has changed his meds a few times since then. We just went back and he wants him to continue the two Horizant pills and is slowly adding methadone. Right now we have just started a 2.5 mg. pill along with the two horizants. Last night was his fourth night and the first night he saw a positive change for the better. Not 100%, but better.

The plan is to move to a 5 mg methadone pill in the near future depending on how he does.

Questions: What are the effects of taking Horizant and methadone together? i have done some research but do not know at which levels they are talking about. He is 72. Thanks

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tiffanie125d
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SueJohnson profile image
SueJohnson

Welcome to the forum. You will find lots of help, support and understanding here.

Who are you seeing at Johns Hopkins. If it is Dr Early he is a world renowned expert and knows best.

Otherwise. The main problem with taking both together is if he has breathing problems. You say 2 horizant pills. What are the size of the pills?

With methadone he won't need the Horizant but he should wean off them, not stop them suddenly as he will get withdrawal symptoms.

Your doctor is starting out correctly with the 2.5 mg methadone. According to the Mayo Updated Algorithm on RLS, the usual effective dose is 5 to 20 mg.

Check out the Mayo Algorithm which is the bible for treating RLS and will tell you everything you want to know about its treatment at Https://mayoclinicproceedings.org/a...

Has he had his ferritin checked? If so, what was it? This is the first thing his doctor should have done. Improving ones ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when he sees his doctor ask for a full iron panel. He should stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have his test in the morning before 9 am if possible. When he gets the results, he should ask for his ferritin and transferrin saturation (TSAT) numbers. He wants his transferrin saturation to be over 20% but less than 45% and his ferritin to be at least 100. If they are not, post them here and we can give you some advice.

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.

Marmav profile image
Marmav

Sorry, I can't help you. I haven't taken either of those. I am at present in Gabapentin but am the stage where I either need to change my medication or increase the dose.

SueJohnson profile image
SueJohnson in reply to Marmav

How much are you taking?

Marmav profile image
Marmav in reply to SueJohnson

600 mg per day. I take two at 6 pm two at 8 pm and two at 10 pm.

SueJohnson profile image
SueJohnson in reply to Marmav

You definitely need to increase it. Take the full 600 mg at 10 pm (I assume you go to bed at 11:00 to 12:00) and add the extra you get to the 8 pm dose. According to the Mayo Algorithm the usual effective dose is 1200 to 1800 mg a day. Ask for 100 mg capsules or pills and increase by that amount every couple of days until you find the dose that controls your RLS. If you need more than 1200 mg take the extra at 4 pm.

Marmav profile image
Marmav in reply to SueJohnson

Thank you! I will definitely do that. It's great to have advice about this as the doctors don't tell you how to take them.

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