Nonmedication strategies for RLS by Shalini Paruthi,MD

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
paulande
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Nonmedication strategies for RLS by Shalini Paruthi,MD

Postby paulande » Wed Mar 13, 2019 12:48 pm

Regarding the article in the most recent "Nightwalkers" magazine - Winter 2019. p.8, paragraph 5 states "Next it is important to get a good sleep. I don't understand this as my RLS keeps me from doing that very thing!
I have a very long list of things I have tried over the last three years as I have a very, very understanding doctor who will prescribe any medication I want to try including gabapentin, opiates, ropinarol, klonapin etc. etc. I have also tried Hylands "restful legs", essential oils(several kinds), vitamin K, 10 lb blanket, compression stockings, iron, natural therapies, vitamin B12 ,medical marijuana, hypnosis, acupuncture, no caffeine to name a few. This is not the entire 3 year list!
I acquired RLS at age 25 with 1st pregnancy. Did not ever take L-dopamine or even go to any doctor about it but at age 70 I got hit with the worst symptoms ever. Wake up ever 1-2 hours. This is when I finally tried doctoring and that has not helped either. I am now 74 and still nightwalking.

Does anyone have any comments??

stjohnh
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Re: Nonmedication strategies for RLS by Shalini Paruthi,MD

Postby stjohnh » Wed Mar 13, 2019 2:59 pm

Paulande, Welcome to the RLS community. You will find lots of helpful, empathetic people here who truly understand how life-altering this miserable disease can be.

I'm a 71 yo guy who first had RLS symptoms in my 30s and started needing medication in my 60s. I, too have an understanding doc who will give me almost any reasonable medication I want to try.

My first comment is that I don't see IV Iron infusions listed in your med list. RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood tests doctors usually do (ferritin test) to check for low iron only check for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/article/pii/S1389945717315599?via%3Dihub


If you can't get IV Iron treatments, my next suggestion is to try low doses of multiple meds. RLS has two components that are separate, and generally require separate meds to treat: 1. urge to move (jumpy legs in the evening-mediated by the dopaminergic system) and 2. insomnia (mediated by the glutamate pathways).
Meds that work on urge to move: IV Iron infusions,dopamine agonists (Requip, pramipexole, etc), gabapentin (and its relatives Lyrica and Horizant), opioids, dipyridamole.
Meds that work on sleeplessness: IV Iron infusions, gabapentin (and Lyrica, Horizant), Medical Marijuana, opioids, dipyridamole.

It would be helpful if you tell us what meds and dosages you are taking now, and if you have any urge-to move symptoms or if your problem is sleeplessness only.

I included dipyridamole in the med list. Its use is considered experimental and most docs won't consider prescribing it, even though it is a safe med that has been used for other purposes for many years. I only include it because it works (I have taken it) and you said your doc was very agreeable about prescribing almost any med you asked for.

You posted in the non-drug treatment section: some people have had success with non-drug treatments. I tried several and didn't get much benefit. It seems that non-drug treatments are useful for only a relatively small group of RLS patients. I'm sure that some of those folks who have had success will offer suggestions.
Blessings,
Holland

Rustsmith
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Re: Nonmedication strategies for RLS by Shalini Paruthi,MD

Postby Rustsmith » Wed Mar 13, 2019 4:49 pm

My first comment is that you should understand that Dr. Paruthi has RLS herself, so she is one doctor who understands what we go through. Second, she was asked to write a column on non-medication approaches to treating RLS. I know this because I submitted a similar column that wasn't used because they had already asked Dr. Paruthi to prepare one. Finally, she didn't have many suggestions because there simply are not that many non-medication strategies that work, except possibly for patients with mild to low moderate levels of RLS. For those of us with severe RLS, you are pretty much stuck with treatments based on a variety of meds, which Holland has described already.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Nonmedication strategies for RLS by Shalini Paruthi,MD

Postby badnights » Fri Mar 15, 2019 5:43 am

hi Paulande. Sounds like you're living a nightmare. I am sad that this level of suffering is still so common among us. I have to admit, I used to get livid when I read things like that - how do you expect me to get a good night's sleep when the whole darn problem is that I can't? But enough said on that. Are you taking anything for the WED/RLS right now?

Did anything change in your life about 4 years ago? Did you start a new medication or change your diet or anything at all? You're probably aware that some substances can trigger RLS/WED eg. medication that has anti-histamine-like properties, many anti-nausea meds, most anti-psychotics, any dopamine blocker. Dietary changes can be harder to pin down, but if you remember any major change, it might be relevant. Did you have an operation? That seems to be the trigger for a lot of people, perhaps because of blood loss.

I agree that your best best is probably an iron infusion. You say you've tried iron, but how much of what kind for how long, and what were your blood levels of ferritin before and after? Oral iron can be tricky. I take 3 tablets of 65 mg elemental iron each, in the form of ferrous sulfate. If you don't take the iron with vitamin C, it won't be absorbed well. So - maybe another effort at oral iron will help, depending on how you did it before and if that method can be improved on.

But the better method for us seems to be iron infusions. See Hollands's post. It is probably the single best thing for you to look into.

The other thing would be opioids. You have tried those too: which one(s), did it help at all, were there side effects, why did you stop? There are lots of different opioids, so there's probably one out there that will work for you. Barring that, you could try kratom, which is a herb that has opioid-like properties and is legal in many places (but not all).
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

SuzeLeslie
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Re: Nonmedication strategies for RLS by Shalini Paruthi,MD

Postby SuzeLeslie » Thu Mar 28, 2019 1:16 am

How often should one have these iron infusions?

stjohnh
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Re: Nonmedication strategies for RLS by Shalini Paruthi,MD

Postby stjohnh » Thu Mar 28, 2019 1:19 am

SuzeLeslie wrote:How often should one have these iron infusions?
Iron infusions (except for the first couple) usually last about a year before repeat is needed, but there is quite a bit of variation. The first few infusions frequently don't last as long.
Blessings,
Holland

legsbestill
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Re: Nonmedication strategies for RLS by Shalini Paruthi,MD

Postby legsbestill » Sat Mar 30, 2019 11:36 am

I suspect that what Dr. Paruthi is referencing is that, in a most cruel irony, lack of sleep actually exacerbates RLS. I have seen this referred to elsewhere also and it is certainly my experience.

After I withdrew from pramipexole following augmentation, I went into a spiral of no sleep and terrible symptoms which lasted for months. Eventually my GP prescribed an opioid which (in very high doses) settled my RLS so that I could at last get some sleep. It was only once I started to get some sleep that my symptoms started to settle down and eventually I needed a much lower dose of medication to manage my RLS. I have noticed since that if I build up a sleep deficit my RLS reliably worsens.

I hope you manage to get your RLS under control. It is truly a torture when it rages as you are experiencing.

Stainless
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Re: Nonmedication strategies for RLS by Shalini Paruthi,MD

Postby Stainless » Fri Apr 19, 2019 4:03 pm

I had read an article where the doctor said he had seen RLS patients who did better later in life. At 62 I'm not real encouraged from what I read above. I've been blessed with such a great life, I guess this is just a burden I have to carry.


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