MyRLs are becoming a problem and I regularly lose sleep. My GP says my iron test came back normal and wants me to try Pregablin. I am reluctant . I want to explore other alternatives. Do any sleeping pills override the RL ? Magnesium has been suggested… but how much and which one?
Any suggestions would be gratefully received. X
In my lab, normal can be anything from 3 to 300.
So what is your doctor's idea of normal.??
You know ,yourself ,to ask for the actual number.
Then come back to us.
All the best.
As Madlegs1 says: you need to get your ACTUAL numbers from your doctor; also, was your test done in the morning after overnight fasting and abstinence from iron supplements (if used) for at least 48 hours?
What is normal for others is not normal for those of us with RLS. You say your iron was tested. Did you have a full iron panel? If you didn't have a full iron panel, you probably didn't have your ferritin tested which is what is most important for RLS. And if you did but didn't 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 then your ferritin would have been higher than if you did and therefore wouldn't be the number you need. Ask your doctor what your ferritin was as Madlegs1 said. You want it to be over 100 and your TSAT to be between 20 and 45. If not post back here and we can give you some advice.
I thought you took pregabalin before? Why don't you want to take it?
As to magnesium: it helps some (me) but not others (my brother). I'd get your iron sorted first, but if getting your Ferritin over 100, preferably higher, doesn't work you might then think about magnesium. I use magnesium citrate: originally 600mg a day, then 400mg, now only 200mg. Higher amounts can have a laxative effect. If this is a problem, and if you can get it, magnesium glycinate doesn't have a laxative effect and can also aid sleep. Don't know the dose for this though. But sort the iron numbers first.
thanks so much xx
As far as magnesium it helps some. Magnesium glycinate is the one usually taken. Start off with a low dose of 200 mg to see if you have side effects and increase slowly. It is best taken in the evening. Take it at least 2 hours apart from any iron tablets. If you have kidney problems talk to your doctor before taking it.
Hi, why do you say about taking magnesium and the pregabalin 3 hours apart ?
Because it reduces the absorption of the pregabalin.
Thank you, I take Pregablin 3 times a day and have just started taking magnesium. It would be hard for me to take magnesium 3 hours apart from Pregablin.
I have just been private messaging with Madlegs1 and she has shown me a source that this is required only for gabapentin, not pregabalin.
Can I ask why you take it 3 times a day. Did you have symptoms during the day before you took it?
If you try sleeping pills, lunesta or zolpidem are the best ones, although zolpidem is not recommended to be taken every night as you can build up tolerance to it. Zopiclone is also used but again is not recommended to be taken every night.
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.
Sorry, I seem to have replied in the wrong place!!
You asked about meds.
I take Apixaban, Diltiazem, Digoxin for my AF plus a Statin Rosuvastatin.
I also have a Fostair inhaler
Thankyou for all your information
Best wishes xx
Digoxin is probably OK. Apixaban may be OK although 1 person said it made their RLS worse. Diltiazem is a calcium channel blocker and makes RLS worse for most. For high blood pressure propranolol (Inderal, Hemangeol,InnoPran) seems safe and there is Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. And then there are the ace inhibitors such as Zestril (Lisinopril, Qbrelis, Prinivil) and Perindopril (Coversyl). Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS, which also treats insomnia and ADHD (not a stimulant) and may help RLS, tenex (Guanfacine, Intuniv) treats ADHD and high blood pressure, prazosin (Minipress) - alpha-adrenergic blocker that treats high blood pressure; useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that treats erectile dysfunction, enlarged prostate, and high blood pressure and in one study completely eliminated RLS. Discuss these with your doctor.
Statins are known to make RLS worse. Nexlizet (Nustendi (UK) s a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS although the FDA does show it increases RLS for some people and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
I was given Zopliclone to help sleep but the RLS breaks through quite easily.
CBD gets rid of my RLS and helps me sleep. I take a Trazodone once in awhile when I can’t get to sleep. That or a small amount of THC works.
Hi, I have moderately severe RLS and for about a year I was on pregabalin. My experience with it is mixed but mostly negative.
Does it work ? I found modest benefit from it. In combination with a 50mg Tramadol tablet it blunted most of the rls sensations. However, I found it to be highly sedating too. So sedating in fact that I went to work late several times because I overslept. Waking up on pregabalin was very difficult for me.
Additionally, it caused a very significant gain in weight! I gained 30lb while I was on it.
So, eventually I asked my doctor to discontinue this medication because I felt this drug’s negatives far outweighed it’s positives
But in all fairness, everyone reacts to drugs differently. You may not experience the somnolence and weight gain but if you go on it be on the lookout.
Finally, you may be asked to consider gabapentin, which is in the same class of medication. This drug is gentler but for me at least completely ineffective
Best wishes for finding an optimal treatment
Thanks so much for your replies … so many and loads to think about!
Will get results for the iron tests first of all and move on from there!
Sue, you asked me about meds.I take Apixaban , Diltiazem, Digoxin for my AF plus a Statin Rosuvastatin. My GP has prescribed Nortriptylene to try to help with sleep.
I know that you also posted this further up the chain and Sue has replied there. Just to reinforce the point on statins: I had my worst RLS ever on atorvastatin and then rosuvastatin, and they also made me really tired - frankly the worst I've ever felt. I was so relieved when my doctor took me off statins and put me on ezetimibe: this doesn't trigger my RLS - it works in a different way and more slowly than statins but is recommended by the NHS for people who cant tolerate statins.
Interesting! Never considered that the statin could be trouble!
GP still wants me to try Pregablin😕
Statins may not be a problem for you, and if you think they are you must discuss alternatives with your doctor, not just cone off.
My stroke consultant denied that statins can trigger RLS (and didn't consider RLS a serious issue). But she eventually agreed to put me on ezetimibe (brand names Ezetrol, Zetia) instead. My doctor agreed. I later found that ezetimibe, which works differently from statins in that it inhibits the intestinal absorption of cholesterol, is recommended in the UK if a statin is “inappropriate or not tolerated”. It generally works more slowly than a statin, so may not be suitable for those with very high LDL.
Other alternatives to statins include bempedoic acid which works by reducing the production of cholesterol in the liver. And Nustendi (Nexlizet in the US) which combines ezetimibe with bempedoic acid.
Lipid lowering fibrates (such as fenofibrate and bezafibrate) can also be used if a statin is contra-indicated or not tolerated.
These alternative treatments also have side effects (virtually all drugs do) but may not trigger RLS (ezetimibe doesn't for me).
I take Oxycodone for the restlessness. For sleep I take 25mg of a Delta 8 THC (Indica) gummy about 1 1/2 hours before bedtime and 100 mg of CBD at bedtime. I still wake up 2-3 times but fall back to sleep quickly. If I don’t then I take about 2 totes from a vape pen of the above THC . If I forget to take the CBD I definitely see the difference as I wake up more frequently. I wish you the best in finding the “recipe” that works for you.
I take zopiclone and it helps no RLS most nights !
Will your GP prescribe it long term?
Mine gave me 5 pills …. reluctantly!!
Sleeping
This is tricky, PLMS or REM Sleep
Sleep
Sleep
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