Restless legs

[Pam34]

Hello 

I wonder if anyone could give me their opinion on magnesium malate? 

I have suffered from RLS all my life but it became unmanageable once I started the menopause at 50 and I was down to 2-3 hours of broken sleep a night. After various unsuccessful suggested home remedies I went to my GP and was given Ropinorole. I thought I had found the answer - it was brilliant. However 12mths later I am suffering from augmentation and rebound. My doctor simply wants to increase my dose and doesn't believe in augmentation because he has never heard of it and everybody else he knows is ok on Ropinorole! I feel like I have hit a wall. At least I have a referral to the neurologist from him as he won't support me in coming off Ropinorole which I understand can be pretty bad. So I have written off my evenings and take 1mg at 10pm which allows me to sleep til 1am, I then take another 1mg which allows me to sleep until 5pm. But I know this will also become less as the tablet reduces its effect.

In the meantime and while I wait for my appointment I am trying Magnesium Malate 300mg at night. I have only being doing this a few days and have not yet noticed any effect. How long does it take? 

I also considered taking Curcumin - has anybody tried this and with what results? And can you take the two together? 

Thanks

[Legsandmore]

Hi l tried Curcumin and felt it made my symptoms worse. I take Magnesium Citrate, Vitamin B6 and D3.

The other really helpful product is Magnesium oil rubbed into the legs at night. Also New Era Mag Phos number 8 which you can get online is also good for RLS.

I too augmented and it was awful. I found that the Magnesium etc did not help until l had coped with the withdrawal from the Meds and had them fully out of my system. 

The Magnesium takes time and you need to be patient. As each of us is different some trial and error will be necessary to find what works for you.

Good luck and please don't hesitate to ask for any further clarification.

[Pam34 in reply to Legsandmore]

Thanks for this. My doctor won't support me coming off Ropinorole so I'll guess I'll have to wait for my neuro appt. But it's worth knowing that I may not expect any results until I am free from the meds. I'll persevere for now and not introduce anything new or I won't know what works and what doesn't.

I've tried the magnesium oil but didn't really like it I'm afraid.

Do you not take any meds at all then now? I'm wondering what may be suggested to me as any other dopamine will just cause augmentation. Pregabalin seems another route.

Like you say - trial and error, What works for some won't work for others.

Thanks for your help.

[frances1 in reply to Pam34]

I am taking magnesium L threonate at night and malic acid in the day sleeping a lot better and feel happier in my self, take co codomol when I need it, tried most drugs from doctor did not suit me. take care

[Pam34 in reply to frances1]

Thanks Frances - it's a minefield out there! Wouldn't it be lovely if someone just took charge (other than us!)

[MATTIELUKE in reply to Pam34]

I had mentioned I am taking Mag. Malate with good results however I did go through horrible, horrible withdrawal from Mirapex before I discovered mag. I don't know if it will help getting through the withdrawal but once I was on the "other" side the mag has saved my sanity.

[Pam34 in reply to MATTIELUKE]

Yes, I'm not looking forward to coming off Ropinirole - they don't warn you of that when they recommend it. I keep delaying it as there never seems to be a good time.

[Jumpey]

Hi. I've only just started taking mag. malate so can't testify to its efficacy yet. I've been taking 25mg of iron bisglycinate an hour before bed for a couple of weeks and this seems to be helping. I take codeine when my symptoms are severe.

[Pam34 in reply to Jumpey]

Thanks - fingers crossed the magnesium works for us both then. I don't get any pain - do you use the codeine to control that? I notice a lot of people also take Tramadol which I thought was pain reliever. 

[Jumpey in reply to Pam34]

Yes I hope so too! Yes I get pain-aching arms and legs. The codeine helps with this. However, it also stops the RLS  symptoms for a  time, irrespective of the pain. Opioids (including Tramadol)are known to be effective for RlS.

[Hidden in reply to Jumpey]

Hi Jumpey.  I would love to hear about your experience with the iron bis-glycinate.  Everyone on here goes into great detail (and rightly so) about their experience with prescription medicines, you should feel free to as well with regard to the iron.  Your success, or lack thereof, will be an education for all of us.  I cannot even begin to describe the magnitude and importance of your trial run with the iron.  As Nightdancer pointed out, Dr. Earley has spearheaded a clinical trial wherein he is giving RLS patients oral and/or intravenous iron.  There are people on here who are suffering and may not want to wait months if not a year to hear the results of his clinical trial.  You are our guinea pig so to speak

[Jumpey in reply to Hidden]

Hi.I Will report on my progress with the iron and also the mag.malate. I feel the iron is helping already-but you know as well as I do that this disease can go through phases -from severe/ acute to a more remissive less active stage/period so only time will tell. By the way, I have noted that your opinion is that the iron and mag should not be taken together at night. Why is this?I have been doing so.

[Hidden in reply to Jumpey]

The magnesium may bind up the iron preventing absorption.  Glad the iron is already helping but everyone who tries it gets 100% relief from day one.  The question is for how long.  SuperMW gets 4 hours then has to take another and the rest get closer to 8 hours of complete relief.  Yep, maybe it's the magnesium you're taking with it.  Iron is a jealous lover.

[Jumpey in reply to Hidden]

Cheers for this. I'll take them at different times. At present I get about 3 hours relief and have to take another. So it will be interesting to see the effect of removing the magnesium.

[Hidden in reply to Jumpey]

And let's make sure you're free of the no substances.  No statins, no HRT, no birth control pills, no metformin, no antacids, no diet pop, no melatonin, no big meals at night, no anti-d's, no anti-histamines.  Is there enough zinc in your diet?  I'm terribly, terribly disappointed that you get three hours of relief only.  That's unacceptable.  I will work with you until you are up to 8 hours.   I am hoping that separating the magnesium out will push you closer to the home stretch. 

[Jumpey in reply to Hidden]

Thank you so much for your kind help.I really appreciate it. No to all the meds except antacids- I have an hiatus hernia and without Gaviscon I could not cope with the pain of the acid reflux when it arises. I don't take it every day,only when required. I haven't noticed any exacerbation of my RLS on the days I use it. I do take Felodopine- a calcium channel blocker- and have recently discovered that this can trigger RlS. So I have booked an appointment with my doctor to discuss this. Unfortunately, I have previously tried several other meds for my high blood pressure but side effects have been prohibitive, so I'm not sure what options are left. You seem very knowledgeable about this condition.Is that because of extensive personal research or are you a medical professional?x

[Hidden in reply to Jumpey]

No I think Gaviscon is ok.  Not much if any enters bloodstream right?  I too have a hiatal hernia and heartburn there from.  I am trying to flatten my stomach in hope the hernia will drop.  I could be fine one second (no heartburn) then bend over and get heart burn.  As soon as my stomach bulges into my esophagus it's all over as they say.  I use "Original papaya enzyme" and zinc carnosine.  Any type of zinc will get rid of your heartburn for a brief period.  There's even a few You Tube videos demonstrating a massage technique to push your stomach back down into place.  Supposedly if you do this enough then the opening where the stomach pushes through into esophagus will start to heal and close up and not allow the stomach to so freely move up into it. Lastly, I try to lie on my left side at night.  It makes it virtually impossible (allegedly) for the acid to back up into stomach.  I have found this to be true.  However once you are asleep you tend to roll over.  When I am on my right side it seems like the acid is sure to come up.  I am not a doctor.  I am an auditor by day and a scientist wanna be by night.

Calcium channel blockers are bad for RLS.  Your RLS may return to baseline once you stop.  Hopefully baseline is very mild.  I read that researchers are looking at just the opposite of calcium channel blockers to help RLS.

In terms of high blood pressure I believe diuretics are safe and maybe beta blockers.  Now I'll mention all of the silly stuff that is supposed to help.  Yoga, meditation, magnesium, taurine, weight loss, walking, deep breathing.  Do you own a blood pressure cuff?  This could be a very interesting journey for you.  Lower your blood pressure and get rid of your RLS in one fell swoop.  Relieving the RLS alone will probably greatly reduce your blood pressure.  I know that niacin (the kind that makes you flush) will help lower cholesterol.  Also serrapeptase is supposed to help with cholesterol.  I have done very little research on high blood pressure.

Please let us know how you are sleeping these days.

 

[Hidden in reply to Hidden]

And you also must let us know about the magnesium L. threonate.  My own personal goal is to get to the point where I hardly ever need the iron and I truly believe that magnesium l threonate is helping me get there.

[Jumpey in reply to Hidden]

Thanks very much for the advice and info-about the hernia and blood pressure. I do all the stuff you mentioned-yoga, meditation, exercise,magnesium etc.. Don't need to loose weight. I don't know what taurine is? I also don't have high cholesterol. I do have a cuff to monitor the pressure. It will be interesting to see what a potential change of meds might do.Side effects,as always, are a problem! I'm  very grateful to you for sharing your knowledge.x

[Hidden in reply to Jumpey]

How many hours of uninterrupted sleep are you getting these days? 

[Hidden in reply to Jumpey]

Jumpey, just read another post where magnesium (and gabapentin) should be taken several hours apart.  Maybe you should do the same with the iron?  Then you might get complete relief.

[MATTIELUKE]

Hi and I take magnesium malate. I had to experiment with the dose but I usually take 1250 mg. a night however I take 1/2 around 8 pm or so and then take the other half around 11 pm. Sometimes I only need to take 1/2.  300 mg did not begin to touch my RLS but I can now sleep on the current dosage. I hope this helps.

[Pam34 in reply to MATTIELUKE]

Thanks for that. That seems a very high dose - is it safe to take so much? This is half my problem, knowing what I can and can't take. Although if it works......

[MATTIELUKE in reply to Pam34]

It is a high dose but I have had blood work done and when taking the high dose my mag levels are just at the high "acceptable" level so it must mean I am so low when I don't. I would suggest googling rls and mag. and see what you find out. I also take iron and vit C. There is also some interesting info on leaky gut and rls. Since I have drastically changed my diet to an anti-inflammatory one my symptoms have improved 90 percent. Best to you.

[Hidden in reply to MATTIELUKE]

Hi Mattie, what type of iron do you take?  And what time of day do you take it?  When I have an attack I take 25mg of iron-bisglycinate on an empty stomach, away from all other supplements, and it provides 100% relief for the night.  Has to be repeated with each attack. Does your iron do the same?

[Jumpey in reply to MATTIELUKE]

I agree this seems to be a really high dose. I hope it's safe for you.

[nightdancer]

youtube video by Dr. Christopher Earley, on augmentation, one of the 2 doctors and researchers who started the RLS Center at Johns Hopkins in the US. Tell your doctor to go look at THAT web site or the video on youtube which is all about augmentation. I "dislike" doctors who think because THEY have never heard of it, it does not exist! ignorant is the first word that comes to mind. Tell him to do a 1 minute internet search, tell him to look at the RLS Foundations, and the Mayo Clinic. I guarantee if the Foundations, mayo Clinic and Johns Hopkins are all studying and talking about augmentation on dopamine meds , it exists! And, also your doctor needs to be reminded that just because "all his other" patients are doing "well" they may not be doing as well as he thinks, and that not all people are the same. His brain is stuck in a rut. Time to expand his knowledge. I do not like doctors who dismiss their patient's opinions and wishes and also do not "get" it. yes, you should find a neurologist, since RLS is a neurological disease, and also augmentation is a daily subject in every RLS group on the internet and the ones that have actual meetings in person. Good luck, get a referral so you can talk to another doctor who might have a clue.

[Pam34 in reply to nightdancer]

Thanks for that and I agree with everything you say. I did print off all the information for my GP, he barely glanced at it and said it was all conjecture. I got my referral (I'm waiting for the appt) and have made up my mind I will not see him again.

I also thought I may make an appt to see a herbalist - nothing lost by it surely?

[nightdancer]

Mag takes time, IF it is going to work at all. Several international experts feel it does not help at all, but if it helps use it, if not, then no biggie. One very well known expert says it should not and will not help. It is for muscular things, and RLS is neurological. So, if you feel it is helping, then it cannot hurt you, but will take more than a few days. The main thing MAG is used for is for muscle cramps, which have nothing to do with RLS.

[Retren]

Night dancer as we have all mentioned repeatedly we are all different and ones physicians should be flexible as they are not walking in our shoes and therefore are not in a position to be able to say these symptoms do not or should not exist.I have been lucky with my physicians they give me plenty of time and listen to me.Of course I am not to know their private opinions.for instance when I asked him about the Relaxis pad without any more ado he got on the computer.