Hi all, to cut a long story short I have RLS for 6 years and have been on 1mg Ropinirole for 6months but, now I want shut of this medication so I've stopped taking the Ropinirole (5th day clean) and thought id try the supplement route but a little bit unsure if I have the right types and how much and when to take them, so I could do with some help with this?
So I'v just been to Holland & Barrett and got me some,
Ferrous Bisglycinate 20mg = Take 1hour before bed on an empty stomach?
Calcium Citrate 1000mg = ?
Magnesium Chelated 400mg = ?
Thanks in advance for all your help/thoughts
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Mark370
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Just wanted to say very well done for getting off the ropinerole.
I will leave it to others more knowledgeable than me to advise further regarding the supplements except to say that apart from iron which I take whenever I notice I have an empty stomach, I take everything in the morning in case it has an exacerbating effect on my legs. There are those who experience relief when they take iron bisglycinate at the onset of symptoms in the evening so it might be worth taking it then. There are also many for whom it makes no impact taken this way. Increasing ferritin serum levels by taking oral iron had a positive impact on a majority of rls sufferers (it can take a long time however).
Congrats on getting off the ropinirole. I could not handle it either. The drs have tried several different meds including Gabapentin which none of them worked for me soooo I went back to the basics:
Magnesium, Iron and Calcium....I have good days and bad days. Recently came off a horrible 3 day RLS RAGE.....
I take the iron at night (better absorption) and I take 2000 mg Magnesium, Calcium Combination daily...PLUS I have Magnesium Oil which I LUV....Topical always works..it's quick and I can apply as much as I'd like.
Lastly, including going back to the basics I decided to smoke cannabis and it helps me to sleep at night.
Nice user name lol, going back to the basics i used to smoke cannabis to help me sleep for years but even stopped that about 7 months ago to rule out if it was this destroying my sleep long term.
yeah thats my thoughts totally, get to the root of the cause and treat it instead of the DR's route of just chucking tablets at you in hope!
Hi Mark, six years isn't that long. Do you know what triggered the RLS? Are you avoiding substances that can make RLS worse such as melatonin, antihistamines, antidepressants, antacids, metformin, statins, calcium channel blockers, warfarin?
I suggest taking the bisglycinate (one or two capsules) on an empty stomach before bed. My rule is to never take during the day because it will decrease (allegedly) the absorption of that night time pill which many people find gives immediate relief.
Magnesium and calcium during the day if you ask me.
Hi Tredlight thanks for the reply, I have no idea what triggered the rls or even if i had it longer than 6 years, the reason behind this is i was a heron addict for 15 years previous to this and noticed the rls after coming of this, so basicly i could of had it before but without knowing because the Opium addiction would of been masking the rls symptoms.
I was prescribed Melatonin 2 months ago by the local sleep clinic after having a home sleep study and the results came back negative for sleep apnea but positive for a REM sleep disorder IE: unable to get into a repair sleep Hence feeling absolutely Knackered 247 . Since then I have also had a PLMB home study test with 2 monitors on my legs which came back positive, My neurologist forwarded a long term care plan to my doctor to keep me on 1mg Ropinirole and 7mg Zopiclone, although the zopiclone helped me 100% with the sleep disorder and getting me back some quality sleep that id lacked I really don't want to be a slave to tablets to feel normal, so last week i thought id try and get off the Ropinirole to see whether or not I could cope with just the sleepers but gradually after 5days the symptoms are coming back and this is where i thought i'd try the supplements as from what i'v read over the past 6 months everyone has a different approach to the way they manage themselves with this shit condition hence my post.
Ok so for now you're going to stop the melatonin? The bisglycinate works for me and many others on here - immediately. So much so that a few of us are "knocked out" by it. Meaning it's a darn good sleeping pill as well.
Yeah, I agree, I hate to see you become a slave to any prescription drug. My goal is for the RLS to become our slave. I want us to be able to toy with it and experiment on it the way scientists do lab rats. But iron is the first step. Then there are people who are getting good results with just magnesium or just b12 (methylcobalmin) and folate (methylfolate) or even diet alone.
You've joined us at a very thrilling time in RLS history. Sit back and enjoy the ride.
in reply to
By the way, I tell everyone that I think that the bisglycinate should be the FIRST substance they take in the evening before bed - on an empty stomach. Then the TV (news, a movie) goes on or a book or headphones or radio. If RLS is still present after about 60 to 90 minutes you proceed to the prescription drugs.
I say stick with the Plan, iron first, then klonopin. Sometimes we're so anxious to get to the finish line we don't see how far we've come. It sounds like you didn't get RLS till 10:30 last night whereas the day before last it sounds like your arms and legs were bouncing around in the afternoon? I believe that improvement is due to stopping the melatonin and Pepcid AC. I have to remember to research how long it takes for melatonin to clear the body. That fact alone might be the reason why the iron didn't work immediately. I've never known anyone on antidepressants (melatonin is similar especially in the 10mg range) to get immediate relief from iron. It's like taking a bucket of water to put out a forest fire. A bucket of water will put out a camp fire but not much more than that. Someone on clinical doses of antidepressants or 10mg of melatonin would probably need 250mg of iron rather than 25mg and you cannot take that quantity of iron.
Like I said in another post, as long as I was on 1mg of melatonin then 25mg of bisglycinate worked. When I went to 3mg of melatonin (or maybe it was 2?) 25mg of iron no longer did the trick and I had to double the dose of iron.
Sorry mate i forgot to say I had to stop the Melatonin after 7 days because an hour after taking it it was sending me so hypo! Sleep clinic reckon it was doing the opposite and raising my Serotonin levels sky high.
Quote "The bisglycinate works for me and many others on here - immediately. So much so that a few of us are "knocked out" by it. Meaning it's a darn good sleeping pill as well."
A bit dubious about taking the Bisglycinate along with the Zopiclone now you've said that, What you recon?
My theory is keep trying different things until i get the right cocktail that suits me as the doctors aren't much help and when they are it all takes too long and in the mean time were all suffering.
Iron just seems to affect certain RLS sufferers that way. Kind of the way the tryptophan in a big turkey dinner knocks people out. I doubt there is a doctor in the world that would consider it taboo to take iron (or turkey for that matter) and a sleeping pill in the same evening. They might even laugh you out of their office. Now if you said alcohol and a sleeping pill they would sit you down and lecture you. Kapish?
Just wanted to say that I just came off pramipexole and it has been 3 days! I have been through hell! but hoping it is going to get better and trying to be strong.
Thanks to everyone that replied my post now I am on B12, folic acid, Magnesium during a day and iron bisglycinate in the night(about half hour before bedtime. ) I have slept better last night after having 2 sleepless night. I am hoping that is because of the iron! Long it may continue ..
Haha so i took my Magnesium & Calcium together about 3 hours before bed and didn't really feel anything at all and my knees & legs were playing up something rotten , they had been all day! 2 hours after and 1 hour before bed I took the Iron tablet (Ferrous Bisglycinate) and after about half an hour i felt all the pain from my knees and legs drifting away and all that heavy feeling gone away so I went bed and had 1 of the best nights sleep ever see the attached pic in the link: ibb.co/iHVsO5
Not to sure if the Magnesium or Calcium actually contributed for the awesome sleep i had but I will keep messing around with the concoction to see what does what for me
You are a lucky man. Only a handful of times in over 10 years was I awake to feel that melting away of the RLS agony. Welcome to the Ironman club. "Pay it forward."
Thanks I'me not counting my chickens yet as its only one night we'll have to see how it goes as i've been in this situation many times before thinking that's it i'll be okay from now on!
Its weird as my ferritin levels at xmas was at 103 and from what i've read they're pretty normal.
When saw the neurologist a few weeks ago he actually took more blood to carry out a more in depth iron tests, binding/saturation ect ect see screen shot in pic: ibb.co/mwqOwQ
Hopefully Iron is the way forward? I did read somewhere on here that one person had an Iron infusion and it worked wonders with him.
so night two done and dusted with the help of gentle iron and woke up feeling great!
1st night 1 hour before bed legs and knees were burning and aching like mad , took 1 20mg Ferrous Bisglycinate 20 minutes later felt all the pain just washing away and slept like a log.
the next day though the knee ache and leg pains came back around lunch time, held out until mid afternoon and thought Id take another Iron tablet just to see if the pain went and yup 20 minutes after taking it all the pain disappeared, just before bed i took 1 more along with 1 x 7mg Zopiclone and slept like a log again and woke up feeling great, now its mid afternoon and no leg/knee pain at all.
Just thought Id update this post to help get the information out there hopefully helping the next person that comes along to this site in desperation to find help.
Tag, you're it!!! Yes please keep up spreading the word on here for the next desperate person. And even if it doesn't provide immediate relief as it does for me, you, BKC, GillRLS, Bganim1947, Lauraflora, Aguawaves (she used Restevin iron formula) and about a dozen others I would have to go back and look up, then it is still worth taking for longer because for some people that's how it has to be.
Hi Eitheror, I actually stopped taking all the supplements after about 2weeks because I felt they weren't doing much any more and on top of that my stomach was getting really uncomfortably blotted.
I have had RLS and Periodic Limb movement for 15 to twenty years. Caffeine aggravates, as does alchohol. as does sitting too long. My neurologist prescribed .05 mg x 2 ropinerole before bed and one .05 during travel should I need it. It works beautifully. I would never stop Sometimes a real medication works. That does not mean that taking vitamins and magnesium might help as well.
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