For those who would like to go the non-med route for RLS

[lauraflora]

I used to be on here quite frequently, but then got busy with other things. However, I have exchanged chats with some members who asked me about some of my older posts, as well as I have read things in the newsfeed as they pop up in my email.

Here is an article which I have found not only helpful, but very informative about RLS. drprevent.com/restless-legs/ It talks about the neurotransmitters in the brain that, when deficient, cause RLS. And how to address these with various supplements.

I myself had been addressing only the gaba neurotransmitter, which worked mostly, but not always. Something was missing. When I added the dopa , it worked much better. Taurine is the supplement to take to supply gaba. Mucuna dopa is the supplement to take to supply the dopa. These are based upon the drugs that doctors often prescribe for RLS (which often have unwanted side effects.)

So, I recommend reading the article yourselves, reading more about these supplements, and then deciding if you want to give them a try. There is other info in the article as well, but for myself I did not need to pursue anything else, as these have worked well for me.

[lauraflora]

Altho, I do take magnesium and iron bisglycinate. And b complex.

[Doings in reply to lauraflora]

Very interesting reading thank you so much. I’m weaning off Pramipexole and doctor suggested I take iron 200mg and Folate inc B12. I do take magnesium already which I think helps. I’m a bit concerned about that level of iron can you recommend your brand and I’ll find it on Amazon.

Thanks.

[lauraflora in reply to Doings]

I have used a few different brands of iron bisgylcinate, depending upon which is available at a good price, either Amazon or my local healthfood store. The mg. strength is about 30 mg. The one I have now is by Source Naturals, 27 mg.

[Doings in reply to lauraflora]

I’d like to know if doc suggestion of 200 mg is incorrect or not it seems massive and I’ve not had an iron test.

[lauraflora in reply to Doings]

200 mg does sound rather high. I have not had my iron levels tested specifically for RLS, tho I think when I have had annual blood tests my iron is in a good range. I think you might have some luck asking others on here, as well as looking up recommendations for iron for RLS. I don't know for sure.

[s_gc in reply to Doings]

200mg is not too high, I was prescribed roughly double that by the doctor who seemed to have a very good understanding of RLS. It did say to give it a break after the first three months which I did at the time but since I have been back on it and actually take two tablets of 210mg Ferrous Fumarate every other day.

[lauraflora in reply to s_gc]

Is ferrous fumarate a different form than iron? I am not sure about that, but I wonder. I have read on this site mention of having one's ferretin level checked, not just iron levels.

[s_gc in reply to lauraflora]

Yes it is ferritin levels you need to check because as a storage blood protein of iron, it is a good indicator of iron deficiency. About a quarter of the body's iron is stored as ferritin which plays a key function in the absorption, storage and release of iron as and when the body needs it. As for ferrous fumarate it is just more gentle on the stomach and is an easily absorbed source of iron. The version I get is also vegetarian friendly. See details of ferrous fumarate medicine form here medicines.org.uk/emc/produc...

[lauraflora in reply to s_gc]

Thanks for your info. I have iron bisglycinate chelate, 27mg. It seem to work well without upsetting stomach or causing constipation, which some other forms of iron can do.

[Eryl]

It's still adding things to try to hide the symptoms rather than getting down to the problem of what's causing it and removing the causes, which are in most cases inflammation of the nerves due to food. Refined vegetable oils can contribute as can high blood sugar levels due to eating sugary and/or processed foods like bread, cakes biscuits and fruit juices as well as other high carb foods.

[lauraflora in reply to Eryl]

I don't eat those things anyway, and am rather particular about how many (only natural, whole food) carbs I eat on a daily basis. Inflammation of nerves is one cause of RLS, but I don't imagine it is the only cause. Neurotransmitters in the brain seem to be another cause. Damage to nerves from accidents, etc., is another. Genetics plays a big part. It's not a one size fits all issue. People have to try some different approaches to see what their own problem is, and what might help. Could be more than one thing in some people. For some people it can also be food additives - such as the dreadful MSG. It can also be otherwise healthful foods, ones which happen to contain a larger amount of glutamate (a natural substance which we all need some of,) such as aged cheeses as compared to regular cheese. Mushrooms, I think, also contain glutamate.

It is a tricky sort of problem.

[juweave]

Thanks for this, Lauraflora. It sounds interesting.

I'm just coming off all drugs, first pramipexole and now gabapentin. I'm seeing improvements in my RLS, especially since coming off pramipexole, but think I'll still need to do something to get a good night's sleep, so will try some of Dr Adams suggestions.

[lauraflora in reply to juweave]

I never took any drugs for RLS. But I have read on this site of peoples' experiences with withdrawal symptoms. I hope the info is helpful to you.

[bookish in reply to juweave]

You might find magnesium helpful, both with gabapentin withdrawal and with managing without it (assuming it helped a bit). I had 15 years on it and have now been off for 6. It wasn't for RLS but other neuro issues. I have found magnesium, which works on some of the same receptors in the brain, revelatory. Best wishes

[Doings in reply to juweave]

Sorry to butt in on your conversation but I’m weaning off Pramipexole after 20 years and in few weeks will start on Pregabalin I’m very nervous about it. But where can I find dr adams suggestions that you mention. I do find magnesium is a great help. I know my RLS is genetic it goes back thro mother’s side.

[lauraflora in reply to Doings]

Scroll up to the top of this thread of conversations where I have drprevent.com/restless-legs/ article. But DO read the comments people have made and do your own homework. The focus of the article that I meant to point out is the neurotransmitters dopa and gaba as being involved with RLS. I did not get into the large amount of melatonin (altho I do take only 3mg or sometimes 6mg.) I also did not pay attention to many of the other things like phenylalanine and cysteine. I find the taurine to be the most important for me, but some mucuna dopa also to be important, tho less so.

It was the only article that I have found so far (tho there may be others) that talks about both neurotransmitters, not just one. And then there are other issues like food sources that contain glutamate - think MSG, aspartame, yet there are real foods that have large amounts of glutamate (which is actually needed by all of us, but in small amounts for RLS people,) such as certain aged cheeses, mushrooms, and certain fish. Which may be less important. I eat mushrooms, aged cheeses and many kinds of fish. But you might look into that also.

There used to be not much info to be found about RLS, but now there seems to be many more studies and research into it. Good luck and do your homework! Don't take my info as a prescription. Hope this info helps.

[Doings in reply to lauraflora]

Thank you Laura; I do find all the information a bit overwhelming but I’ll try and get my head round it , I do appreciate everyone’s advice.

[bookish]

Interesting article and I'm glad you've found something that works for you. I disagree from personal experience that this is only a condition of older people as I had it from childhood until about age 50. So many possibly linked genetic SNPs as well as the food intolerances, so I don't see how he can be so sweeping. Anyway, magnesium, more B12 and a little methylfolate and getting off the inflammatory foods has resolved mine. Best wishes

[lauraflora in reply to bookish]

Yes, I disagree with that statement also, as I first had RLS when I was about 8 or 9 yrs old. Then it went away till I was in my twenties, then it came and went every few years. However, I have found the taurine and mucuna to be quite helpful, so I can forgive the dr for that statement.

[Hidden]

Sorry, I have the bad habit of expressing my concerns about articles like this.

Some of the statements made by this "MD" appear to be inaccurate or misleading. Of particular concern is the title.

My main concern is that some of the remedies suggested are dubious.

It seems to be a common assumption that things that are "natural" must therefore be safe. This isn't always necessarily the case.

Of particular note in the article is the reference to L Dopa. L Dopa is used as an ingredient in a few medicines as it does increase dopamine levels. It is used for Parkinson's disease, but isn't recommended for RLS because it carries a very high risk of augmentation.

I recall one member writing about taking mucuna pruriens for RLS, suffering augmentation and then finding it very difficult to withdraw from.

I'm not against people trying these supplements if they wish and some may work, partly work, or work for while, but they are unregulated and not necessarily safe.

[lauraflora in reply to Hidden]

I agree with much of what you have said, and thanks for the warning about mucuna. I do take things with the proverbial 'grain of salt.' And I hope other people do also. But I thought putting the info out there is helpful, since many people do not want to take drugs, or have had many problems with them. Just because drugs are regulated does not make them the better choice. It is all in one's perspective and experience. Just like happens with pharmaceuticals, one has to do some experimenting. I see a lot of info on here about drugs, so I feel it is also acceptable to put info about non-drugs on here as well. I am not prescribing, just passing on info.

[Reb0013]

Hi Laura, I appreciate your sharing the information. I enjoy reading EVERYTHING, whether I try it or not. So glad it has helped you. I found the article interesting and in line with others I have read. I had recently added taurine to my bedtime regime of Mg Glycinate and Hirsuta for sleep. I find these 3 things help me get about 3 hrs of sleep before my legs wake me for an hour or so but then I go back to sleep after walking, stretching, reading, etc.

[lauraflora in reply to Reb0013]

I take another capsule of taurine when I wake up, as I find that it lasts several hours but not all night long. That works well, and now I generally only wake up one time during the night. This works for me anyway.

[Reb0013 in reply to lauraflora]

I just started the Taurine and it does help with the sleep. Interesting, I purchased and took a L-Dopa yesterday morning... then my usual 500 mg Taurine, 200 mg Mg Glycinate and 1/2 teasp Hersuta before bedtime and slept 7 hrs without restless legs until 5 this morning!! This hasn't happens in weeks! I'm a little nervous of the L Dopa just yet because of the possibility of augmentation as Manerva pointed out... have a lot of reading to do yet and a lot of experimenting but last night was heavenly!!

[lauraflora in reply to Reb0013]

Glad to hear you are getting some good sleep! It is so important. I seem to need the taurine more than the dopa mucuna, so I take less of the dopa mucuna and less frequently. Perhaps I need it only sometimes. I am only waking up once (as compared to many times thru the night, previously) and when I do I take another taurine and that does the trick. The article does recommend after getting things under control, to eliminate one at a time to see what is needed and what is not. Hope this helps!

[Reb0013 in reply to lauraflora]

Laura to clarify, are you saying you do not have the restless legs sensations during the night any longer?

[lauraflora in reply to Reb0013]

No, I am not saying I don't have any rls symptoms. I think I am being able to keep them under control; I don't think they will ever go away in my life time. If I get them, it is sometimes late evening but not always. Then the most prevalent time is in the middle of the night. But by using taurine, esp before bed, I don't get any for several hours, except sometimes about 4 am. Then I take another taurine and sometimes a mucuna dopa. I have learned that other people do this, so I started doing so also, to open the capsule and put the contents under the tongue. (Most of these do not taste bad at all. )That way it gets in my system much quicker than swallowing -maybe 20 minutes, and I can determine if that is the supplement I need at that time. Usually I respond to taurine, but there have been times when that does not work at all, and then I take a mucuna dopa and that works. By which I feel I need both , but not all the time, and I can avoid taking the dopa all the time. This is how I do it. Hope this helps. I think it also depends upon one's severity of RLS. I had it as a child, on and off, then it disappeared for years, and came back as I grew older. Not caused by accident or injury, etc. Must be genetic altho I am the only one in my family who has it, a far as I know.

[Reb0013 in reply to lauraflora]

We have similiar experiences with the RL. I have 3 sisters and no one but me has it. Thank you for sharing your thoughts and what works best for you!

[Arjiji]

I don't know what kind of Dr. it is that gives such advice, but I think like Manerva and Bookish, that he has made mistakes in his article. One of them is to say that RLS occurs only in elderly people, another is to take L Dopa, and a third is to recommend taking melatonin supplements.

It is a mistake to take melatonin supplements to improve sleep if you have Restless Legs Syndrome, since melatonin is a dopamine antagonist, that is, it WORKS AGAINST DOPAMINE, and it is proven that a dopamine deficiency triggers the symptoms of RLS, hence dopamine agonist drugs (ropinirole, rotigotine, pramipexole) are prescribed, that is, they act to add dopamine to the brain, to combat nerve and muscle discomfort.

And I say this as a Doctor of Psychology, PG in Neuropsychology, and as a RLS patient that I have experienced the consumption of melatonin in my body, making the symptoms worse.

[DicCarlson in reply to Arjiji]

RLS has two components - the uncontrollable urge to move - and insomnia. Iron supplements pretty much solved the urge to move for me - years ago now - but, the insomnia is still a daily battle. His recommendation of melatonin-max (60 mg) seems excessive. I have taken a 1mg sublingual and broken it into quarters (0.25mg) - this is usually enough to initiate sleep. I also take a 3mg time release melatonin on occasion and this helps also.

The severe RLS I experienced was somewhat "sudden onset" but it was preceded by months of sleep issues (when I first tried the melatonin) and leg cramps. I still think about this ALL THE TIME! I suggest the Sleep and RLS came from a head injury some 8 months earlier.

Recent discoveries for me are Magtein and Magnesium Taurate - eliminated all the leg cramp issues. On and on!

[lauraflora in reply to DicCarlson]

A head injury could do it, I would suppose. Glad you are having some success. Have you looked into pregnenolone, the hormone at the top of the adrenal cascade? There is a good explanatory article by Dr. Rian Shah. ndnr.com/anxietydepressionm... It goes into menopause and andropause problems with sleep being quite common.You can read it yourself and see what you think. There is, in the article, the issue that the case study she mentions also had RLS, and the dr makes some recommendations for that. But RLS is not the main, or the only, problem the person has with sleep. As, it seems, both you and I have surmised and experienced.

Yes, I do think the melatonin amount in the first article I posted is too high, and it seems some people have problems taking melatonin if they have RLS. It does not cause a spike in my own RLS, and I do take either 3 or 6 mg each night.

I do mean for people to look into things and not take my words for fact or prescriptions they should follow. Just information they can pursue. It seems some of the replies I have received from other people get a bit harsh, when I am only meaning to be helpful. Ah, well.....

[lauraflora in reply to Arjiji]

I agree that young people can have RLS, as I had it when I was about 8 or 9 years old. Then it went away until I was in my 20s, went away, came back on and off.

I do take melatonin and have never noticed when I take it that it causes my RLS to act up. Yet, I have read people saying that it does cause them problems.

I know the doctor made some mistakes in there, except maybe not from his perspective. I meant for people to read the parts about dopa and gaba, so they could see it might not be only 1 thing that causes their RLS. Perhaps I chose the wrong article, tho I have not seen another that mentioned these two possibilities.

Whether one chooses a drug approach or a drugless approach, experimentation will most likely take place, whether with a doctor or by one's self.

And I am not prescribing. I am only pointing out an article that people could come across themselves by googling. As well as that the two above parts - dopa and gaba - helped me quite a bit.

But perhaps what you have said here will be helpful to other people. So thank you for your input.

[3Chihuahuas]

I have Hemochromatosis which means I have too much iron and yet I have RLS. Go figure

[eternalshadow]

If I use Taurine powder instead of Taurine capsule, will it have the same effect? Anyone knows ?