RLS meds: Does anybody know of any NEW... - Restless Legs Syn...

Restless Legs Syndrome

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RLS meds

olgamarie profile image
13 Replies

Does anybody know of any NEW discoveries for treatment of rls? I have just heard of the usual medicines. Since my rls is 24/7, I would love to hear of any remedies out there. I currently use requib and have used it for year.

Thank you for your time. Have a beautiful weekend.

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olgamarie profile image
olgamarie
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13 Replies

Best drug treatments not in order and not counting for side-effects, (imho):

Dopamine agonists

Opioid/Opiate

Kratom

Cannabis

and non drug:

neurology.org/content/84/14...

That'll start you off and more info here:

rls-uk.org

and here:

rlshelp.org.

Hope that helps

nightdancer profile image
nightdancer

There are no NEW discoveries, some reformulations of old drugs, etc. Are you in the US or the UK? It would make a difference since some meds are not available in the UK that we have in the US. But, there has been nothing new in meds in the last 2 years for RLS, small studies being done, but definitely not enough. What have you tried before we start suggesting things you may have already used or tried. Raffs list is good, my favorite web site to use is rlshelp.org, that one is based in the US. OR the RLS-UK Foundation web site that he listed if you are in the UK, too. The treatment page for rlshelp is golden and has been my "RLS Bible" for the last 10 yrs. IS Requip the only one you have tried so far? if you are looking for something new, does that mean your RLS is getting worse, and you think the Requip is not helping you as well? As far as "internet remedies or internet "cures", the one rule to remember is if it sounds to good to be true it most always is 99.9% of the time. There are also many meds to absolutely avoid. Also depends on where you live, whether you can safely and legally use medical MJ. And, not to argue with Raffs, but Kratom is a leaf from a tree in Asia, trying to remember the exact country, but it is illegal in the country where the tree grows. Lots of workers there (will have to look up the country again) chew on these leaves and it gives the same effects as some amphetamines. Lots of people have tried it, but I would have to a LOT more research before I would ever even try it for myself, and would not recommend it to anyone until they do the research for it for themselves, as with anything. But check out the web sites, and let us know how long you have had RLS, is it getting worse, and have you had to up the dose in the Requip, and what is the dose you are taking now. There are recommended therapeutic doses for all meds used for RLS, and those are global and universal. Too high a dose of any dopamine med like Requip will turn on you and cause you to augment ( which in the context of RLS is worsening of symptoms as the dose goes up) RLS also is a progressive

neurological disease. Just to mention this because it relates directly to your question, the US RLS Foundation is having a free webinar on October 28th, and you can register for it on their FB page or their web site, which is listed on their FB page. Anyone from any country can attend it, they usually last for an hr for the speaker, and then they take questions afterward. The webinar that is coming up is on "What is new in RLS Research?" I manage RLS groups with thousands of people for the last 19 years so I keep up very well with any new research going on, but really, unless they have huge surprise, I see nothing new on the Horizon. In the UK they do have the first opiate combo med approved for RLS called Targinact. not available anywhere else yet. There are all kinds of contraptions that may or may not work. The other RLS 'rule' is what works for one person does not necessarily work for the next person. Also, it depends if you have Primary RLS or secondary RLS ( secondary meaning that there may be some traceable cause that is triggering your RLS, like taking meds that can make it worse, and that includes many over the counter meds) So, depending on your situation and if you take any other meds for any other condition is info we really need to know to be able to suggest anything that we have tried. But no new meds on the way for a long while. And, it has ben 2 1/2 yrs since anything new came on the market in the US, so let us know where you are, in general. ;) That would be really helpful. Just watch out for the "snakeoil" salesmen or women. ;) They do not have your best interests at heart.

I am keeping away from prescribed meds, they make me feel ill and i get nauseas. So i am drinking magnesium powder and iron tabs for ferrin levels (mine is only 10) very low.

nightdancer profile image
nightdancer in reply to

What prescription meds have you tried? is it only one class of meds, or several? There area lot of prescription meds to try that may not make you feel that way. The Parkinson's meds are famous for the nausea side effect. What have you tried and is the magnesium and iron helping you? it takes a looong time to get your ferritin up when it is as low as yours with tabs. My first ferritin level years ago was 6, so that is barely any at all. 10 is also barely any at all, and it will take quite a while to build it up

They think i may have Fibro, so i have tried Topamax,Endep,Mirapex(i threw up 3 times on half a tab),Lyrica,Cymbalta.

Coastwalker profile image
Coastwalker

Not a new remedy olgamarie, but a 'good safe dose' of vitamin D3 cured my restless legs at night, stiffness getting up out of chairs and bed. Also my hips and tailbone pain and sciatica pains down my legs if that is of any help. :)

RLS-Hubby profile image
RLS-Hubby in reply to Coastwalker

Very interesting! My wife has exactly the same symptoms. :(

olgamarie profile image
olgamarie

COASTWALKER, THANK YOU S O MUCH FOR TAKING THE TIME TO ANSWER MY QUESTION. ACTUALLY, i HAVE NEVER HEARD OF D3. I WILL HAVE TO LOOK AT THE PHARMACY FOR IT. IT WOULD BE SO WONDERFUL IF IT WOULD HELP. LIKE YOU I ALSO SUFFER FROM HIP PAIN. AGAIN, THANK YOU.

Coastwalker profile image
Coastwalker in reply to olgamarie

Sorry for my very late reply olgamarie, I am not getting any email alerts from HU.

My Doctor found I was vitamin D deficient in my blood test, 80% + of us here in UK are either low of vitamin d deficient and do not know it apparently.

My Doctor gave me what they described as a 'very high dose' of vitamin D.

I noticed the D3 helped relieve all my (see above) pains, but all pains came back within a few days, so I posted up a question about it and was told that 1000iu was merely a maintenance dose, try 5000iu (iu = international units)

Check it out on the vitamindcouncil for safe recommended up to date doses.

I have not looked back, but all those pains come back if I forget to take even one of my daily vitamin D3 pills.

olgamarie profile image
olgamarie in reply to Coastwalker

Good afternoon Coastwalker,

I also was found to be Vit D deficient years ago. I do take 1000mg. daily.In the Upper Peninsula of Michigan (where I live by Lake Michigan), we are also Vit D deficient because of lack of sun. A lot of my fiends are using light machines, usually starting in October. I have not, but they say it helps their moods substantially. We also have a problem with our thyroid being deficient.

My new Dr. has prescribed a long acting Requib dose and then taking 2 mg. of Requib at 5:00 and 8:00, followed by 2 pills at bedtime. It seems like so much medicine. My RLS is so out of control that it interferes with daily living.

Have you ever heard where taking a anti-depressant increases the severity of RLS. I know that they increase serotonin, which decrease the level of dopamine. And RLS is from a lack of dopamine I have read. What is interesting, but so very sad is that my oldest son was diagnosed with schizophrenia (officially) three years ago, He has had it for years. This illness is one with a altered dopamine level.

Thank you for the reply. Have a pleasant day.

olga marie

Coastwalker profile image
Coastwalker in reply to olgamarie

Hi olgamarie, :)

I do know that Hypothyroidism and antidepressants will make you feel worse, so guessing taking them can also make other conditions worse.

Are you being treated for your Hypo ? If so, are you being given enough ?

Do put your Hypothyroid story onto Thyroid Uk here on Health Unlocked.

I now self medicate with NDT, for my thyroid, my Doctor did not understand I needed more medication to fine tune me as we are all different and thyroid blood tests are unreliable. Years ago before thyroid blood tests, Doctors would give you NDT and as much as you needed to get you better, that is not so now. Now they rely on the unreliable thyroid blood tests to dose you and many of us do not get well. Many like me (at one time,) get missed and left with Fibromyalgia type pains.

Levothyroxine, NDT Natural Dessicated 'Pigs'Thyroid and T3 are all thyroid medications.

I have been hearing about some (wise) Doctors now starting to prescribe T3 medication for depression as it has been found to work straight away and is far better, but you will need to google/check that for yourself as I have no link.

Here is one link you might be interested in as it connects Schizophrenia, ADHD, Tourettes, Bi Polar and other conditions to having a Low FT3 bloods.

(FT4 and FT3 are both measures of thyroid hormone)

wilsonssyndrome.com/depress...

Also recheck your 'side effects' lists on any medications you are taking as my husband found his asthma medication was giving him worse asthma and chronic daily cramps, muscle weakness and bone loss, he no longer takes his asthma medication and we believe the good safe dose of vitamins have helped him as his asthma he has had for over 50 yrs has oddly gone.

Here's another Video of 37 mins well worth watching for anyone on any amount of prescription pills and getting flu shots, it will open you eyes about the medication part of it.

' You tube,' Dr Bergman - how to cure fibromyalgia.

Do ignore my information if it does not connect to you olgamarie.

Coastwalker.

Wow! Lake Michigan. :)

olgamarie profile image
olgamarie in reply to Coastwalker

Coastwalker, Thank you so much for ALL of the information. It shall truly help me understand more all of the different facets to these illnesses and how you can help yourself. I appreciate the time you have taken to write me. Have a wonderful weekend.

Coastwalker profile image
Coastwalker in reply to olgamarie

Hi again olgamarie,

many women who are D deficient might also have a thyroid problem too, they can go hand in hand, I have/had both thyroid and vit D deficiency, along with self diagnosed restless legs at night, (which I no longer have,)

Doctors are known for saying your thyroid results are 'normal' or OK nothing wrong when thyroid bloods results are within range, but being 'low in range' can also give you thyroid problems too, but usually get overlooked, many people with thyroid get missed. (I read this daily from members on Thyroid UK, here on Health Unlocked.)

I have just googled my flash of an idea

'Restless legs and Thyroid'

there is actually a connection between the two. Do google it yourself, (quite interesting.)

Have you had any thyroid bloods done in the past ?

Apologies if I have gone a step too far for you, but I tend to cross question everything now to see if there are any connections with medical illnesses.

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