I’m 51 and have had RLS during pregnancy. However, over the past 3-4 years, it’s been getting worse- likely due to perimenopause. I started oestrogen patches for perimenopause symptoms at the same time and I’m hoping they are not contributing to my symptoms
I started taking ropinorole every night about 2 years ago- thankfully I needed only 0.5mg - occasionally 0.75mg
When I found out about augmentation I started reducing my dose, I am currently on day 2 of 0.125 mg. I also started weaning off sertraline- my antidepressant- I have taken two weeks and I’m off it now. I started taking magnesium. I continue to use 12.5 mg quetiapine every night to help with sleep- and I don’t think I can ever stop that . I have used it for 10 years, and it hasn’t caused RLS even though it’s listed as a drug that could worsen RLS
My question is about my middle of the night symptoms. My RLS have two times when it happens. The one is the usual evening symptoms of not being able to keep the legs still while watching tv, or trying to fall asleep. The other aspect of my symptoms happens in the middle of the night. I wake up due to kicking and moving my legs- usually about 2-3 hours before my intended wake up time. It leaves me very tired in the day. I kick my husband also. Is this a normal part of RLS? Or is it another disorder.
when I take ropinorole before bed, it doesn’t happen. So ropin is effective for it.
Do others also suffer from middle of the night symptoms also??
Any experience in the group with low dose quetiapine and RLS?
Thoughts on HRT and RLS?
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Petru
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Welcome to the forum. You will find lots of help, support and understanding here.
I'm afraid oestrogen is likely making RLS worse which is why you had it during pregnancy.
Your middle of the night kicking is PLMD which is treated the same way as RLS.
On the ropinirole not sure whether you are reducing it in the usual way or not so I will give you my usual advice.
Ropinirole is no longer the first-line treatment for RLS, gabapentin or pregabalin is. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations To come off ropinirole, reduce by .25 mg every 2 weeks or so although you are already at half of that. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. 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 1-2 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 divide the doses on pregabalin) Most of the side effects 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 of pregabalin)." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin).
Have you had your ferritin checked? If so what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor 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. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
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 as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
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 as you are finding out, 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.
Thank you Sue. Very useful info, I would hate having to stop my HRT! Hot flushes 🔥 vs restless legs 😬. May look at tapering the dose of my estrogen patch from 75 to 25mcg and see how it goes.
Quetiapine is listed as a drug that worsens RLS, but you say you've been on it for 10 years , it didn't worsen your RLS and you can't come off it. So you need to treat the main cause.HRT worsens RLS for many people, but not all. It made no difference to my RLS.
Sertraline worsens RLS and you've come off it. You're also reducing Ropinirole which will cause severe withdrawal symptoms ( very, very severe RLS).
Make sure you get full iron panel blood tests and raise serum ferritin above 200. Pregnancy uses up a lot of iron and leaves many of us with permanent RLS. Replacing the iron resolves the RLS. However, Ropinirole can cause permanent damage to dopamine receptors and then iron infusions are not as effective.
Follow SueJohnson advice and raise your serum ferritin.
I used to get early evening RLS AND be woken 2 or 3 times a night with RLS. Most of us also have PLMD, where we kick in our sleep, but stay asleep. Treatment is the same.
So follow Sue's reduction schedule and start pregabalin.
If the iron replacement works, you could then slowly reduce pregabalin and possibly be med free. It's why iron infusions should be given to ALL women who develop RLS in pregnancy.
Morning PetruSue & Joolsg (our experts on the site) have given you detailed replies so just to say it is very typical to start RLS when you are pregnant.
I started then and I wish I had known about iron infusions back in those days.
Kicking in the night is also normal for RLS sufferers.
My husband had a shock when I first started kicking him.
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ferritin level and symptom question 
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