MEDICATION?!

[Amy96]

Does anybody know any good websites that i can access to print of some medications that help RLS? To show to my own GP since every other GP is a twat. Thankyou 🙂

[Madlegs1]

rls-uk.org

rlshelp.org

Both these sites are the best for literature. Also see post by Kaarina below answering Loulubelle on " sleep review"

Google " Dr Mark Buchfurer" and you will get some further studies.

[Kaarina Administrator]

Amy

This is an excellent link for you and your doctor to learn about Augmentation: sleepreviewmag.com/2015/02/...

[Kaarina Administrator]

Amy

On the RLS-UK website rls-uk.org there is also a section For Professionals: rls-uk.org/professional-res...

Once on the RLS-UK website there is a direct link to this HU RLS forum just in case your doctor would like to take a look at how busy it is on a daily basis.

[Bganim1947]

Hi Amy96,

I've been where you are, 3 months ago to be exact. Since joining this site, the wonderful and knowledgeable folks here have helped me turn my life around. Any of you reading this, thank you. I'm an author who's struggled with RLS for at least ten years. Thanks to what I've learned on this site, I wrote an article to help people suffering from RLS to release the hold It has on their lives. I planned to post a segment of that article on this site in the next few days. But when I read your post, I wanted to respond to you tonight. I know how painful it is to deal with this condition, especially when you feel helpless and unsure about where to turn for help.

My first day on this website, I learned two of the most important pieces of information that have enabled me to get my life back.

First, I discovered that my neurologist had me on an overdose of medication--12 Mgs. of Ropinerole Extented Release, when the maximum dosage is generally 2 to 3 Mgs. This over dosage was causing severe augmentation, or a flare up of my symptoms that was far worse than I had typically experienced. Thus I needed to reduce my daily dosage of medication. The kind people here took me through the procedure or protocol I needed to follow to do this safely, since the withdrawal the body goes through when attempting to reduce intake levels can produce an opiate-like withdrawal. After discontinuing my relationship with my neurologist, I began reducing my intake of Ropinerole with my physician's guidance, by 2 Mgs. per month.

The second thing I learned here was to begin taking one 28-Mg. capsule (25-Mgs. in the UK) of Iron (ferrous) Bisglycinate, an Over-The-Counter supplement, every night before bedtime with a glass of orange juice. That alone has been my savior!

As soon as I began taking a daily dose of Iron Bisglycinate, (also called Gentle Iron), even before I began reducing my Ropinerole intake, I no longer had any, not one, episode of RLS. It's been 3 months, and still nothing. I am now down to 6 Mgs. of Ropinerole once a day, plus the iron.

One night, recently, I was very over tired and ended up taking my Ropinerole a few hours later than my usual time of 5 PM. A half hour after taking my late med., I laid down for a short rest, and felt my RLS symptoms beginning in one leg. I got up and took an early dose of the iron with OJ, and in a matter of minutes it disappeared. I truly believe that Iron is the key to overcoming RLS, at least for me.

Two important factors to know about taking iron: 1. It must be taken with orange Juice. The citric acid enables the iron to be fully absorbed into the blood stream. 2. In my experience, Ferrous Sulfate is not as effective as Iron Bisglycinate. I read a post to you suggesting you take Ferrous (iron) Sulfate. I was on that for years. It never did a thing for me. Maybe because no one ever told me to take it with OJ. But from what I've read about the difference between the two, it seems that Ferrous Bisglycinate is absorbed differently into the the body than Ferrous Sulfate. Ferrous Bisglycinate enables the neuro transmitters to move through the spinal cord more effectively.

This is the end of my 4 o'clock in the morning advice to you, my dear Amy96. I hope it helps. If you do nothing more than just go out and get a bottle of Iron Bisglycinate and start taking at least that, it may make a noticeable difference.

By the way, I am awake at 4 AM today, not because I am having a sleepless RLS night, but because my arthritis is acting up. Unfortunately iron bisglycinate isn't the cure for everything.

Best Wishes,

Bganim1947

[Loulabelle7 in reply to Bganim1947]

Well that has helped me thank you I take Ferrous Sulfate have been for a good 6/+ months and doesn't seem to do much for me is there an alternative to orange juice as not keen on it and it gives me thrush

[Bganim1947 in reply to Loulabelle7]

I think it will work with any citrus juice. Ask others on this site.

[Hidden in reply to Loulabelle7]

I have read that the ferrous bisglycinate does not require vitamin C. It is already chelated and highly bioavailable. They're finding now that iron is better absorbed if only taken once a day or even every other day. So if you do buy the bisglycinate try to take it only once a day at night on an empty stomach and about an hour before bed.

[Bganim1947 in reply to Hidden]

Thanks for the tip re: iron Bisglycinate. I'm in the US. I do think that especially OTC supplements may be compounded differently here. Our iron Bis is 28 mgs., and directions recommends that 1 capsule be taken ONLY once a day w/OJ at bedtime on an empty stomach, unless it causes upset. Then a slice of toast, a few crackers, etc. can alleviate discomfort.

Also Nightdancer is correct to say that iron needs to be taken with care & caution, and only IF YOU HAVE HAD YOUR IRON LEVELS CHECKED (Sorry, not yelling, just emphasizing) to determine if they fall below the recommended standard. See the RLS.org reference pages regarding those insufficient levels since they are a good bit lower than the levels most doc's in US or UK think are ok. Also take iron only under physician guidance if you are a woman under 50 to 55 and/or still menstruating. Iron can be dangerous for younger women. I'm not up on the specs on that. I'm 69.

[Hidden in reply to Bganim1947]

All true. Here is the most comprehensive, easy to understand article on RLS I have ever found. And it was published this year so very up to date. A good read for people who will be watching the upcoming program on RLS.

hormonesmatter.com/restless...

[Hidden in reply to Bganim1947]

So where is your article going to be published? Can you share some of it with us? I think the most amazing story is yours!!! Can you send the article on to Johns Hopkins? I will meet you there and plead our case to them. I don't think they realize how many of us are getting relief with 25mg of a bioavailable form of iron versus 1000mg infused in one day. But what I really want to talk about with them is the RLS sufferers who do NOT get relief. I wonder if they're not taking enough or if they should try "heme" iron (from animals) instead of the bisglycinate which is a non-heme iron (from plants). I read that heme iron gets absorbed from the GI tract through a different mechanism than then non-heme iron. Heme iron is actually supposed to be superior in terms of compatability and what our bodies are used to. And there is also a ferrous bisglycinate patch which might be good for people who aren't absorbing from GI tract for one reason or another. But all of these things should be tested by researchers. Well I can dream can't I.

[Bganim1947 in reply to Hidden]

Those are all great points, Tredlight. Are you in the US or UK? I too have read about the animal Vs. plant based iron in an article about vegetarians.

There are so many complex reasons why one path to health and healing works and another doesn't, on top of the mind, body, spirit connection from a holistic perspective.

Of course I plan to share my article with everyone on this site. I was hoping for feedback to help make it more useful to others. I had planned to post a short synopsis of it yesterday, but got distracted writing my long tome to Amy96. It kind of spilled the beans so to speak on that summary. I just felt like it was more important to see if I could help her instead. But I will post at least that much, probably tomorrow.

The longer version needs a little more tweaking, and honestly I want to wait until I have completed the entire 5 months of my titration reduction protocol and gotten off Ropinerole entirely--at least my personal goal is to take just a one a day dose of iron. But that may not be possible. I won't know until I do it. But even if I can get down to 2 mgs. a day of the Ropinerole with Iron bisglycinate, I think/hope that will resolve my augmentation issue.

I can't offer my story to Johns Hospkins or anyone here until I've completed the full reduction of the Ropinerole. Keep in mind, too, as Nightdancer pointed out a while back, I am also on 200 mgs. Of Tramadol and 1200 mgs. Of Gabapentin a day. I've been on that for pain for 15 years since a botched foot operation. I feel those two may have started my RLS in the first place. I never had it before taking those meds. Once I'm off Ropinerole or down to 2 mgs./day, I can begin to titrate off those two. As my doc says, never try to d/c off more than one thing at a time, or you'll never know what's working.

Thanks for your kind words and support. I will post a part of my article soon, maybe tomorrow, so keep an eye out.

Bganim1947

[Hidden in reply to Bganim1947]

For sure I will watch for it!

[cheruk]

How about magnesium? Can you take it with iron? I am quite new to this website and still learning how to reduce my RLS without the augmenting effects of pramipexole. My RLS had become a horrific all night affair, so In the last few days I reduced my dosage from 4 to 3 tablets (GP told me to increase to 5). and now taking 750mg magnesium oxide a day.

If anyone has any advice I would appreciate it although I will tell you that I actually slept fairly well last night, for the first night in I dont know how long!

Thanks to everyone on this site for all of your positive support.

Chrissy x

[Hidden in reply to cheruk]

Hi Cheruk, allow me to vouch for what Bganim and Lauraflora advise. Provided you are not feeling out of control desperate then ferrous bisglycinate on an empty stomach before bed is the first substance you and any RLS sufferer must try. Iron has provided relief to countless sufferers. Magnesium is also great and many many people swear that is all that they need to control their RLS. So this is your first stop. If these substances don't work (and sometimes ya gotta give them a few weeks) and you're desperate then I guess you have no choice but to research pain meds such as tramadol and codeine. I consider the painkillers a lifesaver just like the iron only the painkillers should be the last act of a desperate person.

And either way, you probably shouldn't get complacent on popping a pill for RLS. Several people on here have gotten relief through specialized diets. And there is scientific proof that severe calorie restriction or intermittent fasting will cause our receptors to increase in size and number. Since we with RLS have few and small receptors by definition then this might be one avenue to pursue as well. Let us know how it goes.

[Bganim1947 in reply to Hidden]

Iron bisglycinate on an empty stomach is best, but if you start to get a little bit of a stomach ache, take a little cheese and crackers, a slice of toast, something bland and it will subside soon.

[Hidden in reply to Bganim1947]

I'm about to watch a movie, but I want to know more about your article. VERY exciting.

[lauraflora]

I take my iron bisglycinate (the Gentle Iron mentioned above) at night at the same time I take magnesium. BUT, I do not take magnesium oxide for 2 reasons - it gave me rather drastic diarrhea and I have also read that it is not very well absorbed as a mineral so you have to take a lot. So I use either Magnesium citrate, which is much better absorbed, or another brand Ultra-Mag, which is a mixture of magnesium citrate, taurinate, succinate, glycinate and malate. These forms of magnesium do not cause drastic diarrhea and are absorbed well.

Not everyone is affected by mag. oxide that way, but it is not well absorbed, so you might want to look into some other form.

I take 200mg in the morning, and 400mg sometime in the evening with 25mg of the iron. On occasion, I have taken another 200mg of magnesium if I have woken up and my RLS has acted up (I will admit after a bit too much wine on a weekend night! see below.) Giving it a bit of time to dissolve and get into my system, my RLS quiets down. Sometimes more is more, not less is more. I think there are no problems with having a bit more magnesium than recommended. Also magnesium oil or cream, rubbed on the offending area can be helpful also.

Incidentally, a few of the things that eliminate magnesium from one's body are certain medications (some high blood pressure drugs are on that list, of which I take 2) even over-the-counter meds, and yes, alcohol. So that is perhaps why, besides having RLS genetically, one might need to have more magnesium than someone else. But then, magnesium is good stuff and is involved in a few hundred functions in the body.

Hope this helps.

[Amy96 in reply to lauraflora]

My Aunt has RLS, and no other health conditions have flagged up in my tests except iam vitamin b12 defincant so iam sure its genetic with me also, where can i get theses medications/oils? Thank u for your advice x

[Hidden in reply to Amy96]

Yep ferrous bisglycinate (Amazon is a good place to buy) should be the first thing you try. I use Solgar's Gentle Iron. $10 for a six month supply. If you feel you can afford it there is a form of magnesium called magnesium threonate that is supposed to stand a good chance of crossing over into the brain. I know that the iron seems to have to be able to cross the blood brain barrier to be effective but I'm not sure that the magnesium has to.

[lauraflora in reply to Hidden]

Not sure if magnesium has to, but one doe have to process it thru their digestive system, so the easier absorbable the better. (The magnesium oil goes thru the skin.)

[lauraflora in reply to Amy96]

They are not medications, they are supplements (vitamins/minerals.) Look on Amazon UK. I have gotten them on Amazon in the states where I live, as well as them being widely available at various health food shops here. But Amazon has the best prices. Many of them are available on Amazon UK - just look them up.

[Hidden in reply to lauraflora]

Hey Laura I recently read that magnesium has the ability to bind to and activate the GABA receptors. So it might be a good substitute for people not wanting to use Gabapentin. There is just one too many people getting relief with magnesium to ignore it. You know me - I like knowing what makes things tick. I can't just accept that a substance or diet helps I need to know the whys and wherefores.

[lauraflora in reply to Hidden]

Yes, me too. I like to know, but sometimes on here it gets to long to explain to other people, so I like to point them in a direction and have them do research themselves. But I appreciate getting bits of info from people like yourself.

I have read up on magnesium being involved in several hundred functions in our bodies, so what you are saying about mag and GABA makes sense. It seems we can't live without it.

[Bganim1947 in reply to lauraflora]

Yes, to the iron citrate. Much better.

[Amy96 in reply to Bganim1947]

You know the funny thing is when i went to my doctors complaining of theses terrible legs they would proscribe me tramadol/cocominol at the highest dose, now ive been diagnosed they wont give me any pain relief, i have even told me i dont really like tramadol or cocominol i have boxs of cocodimol but i have been taking them that long i built up a tollerance and now i just go without completly i wouldnt take 1 if you payed me, i also dont want to be relying on theses tablets as iam only 20, there not my thing i know i suffer 24/7 but id rather suffer than take tramadol or cocodimol, the tramadol had me up the fulll night anyway and the cocodimol didnt even touch the sides thats how bad it is for me, but iam gonna try the thing yous suggested, thankyou for the advice, i recieved my complaints booklet from my GP, im taking it the full way and getting something done about theses GPs treating me like shit and i will he saying i want a GP in this practice who knows there stuff about RLS because that has been my only problem for the past 2 years and theyve pied me off everytime until one eventually sent me to a norologist but hes retired now ☹️

[cheruk]

Thanks for all the advice everyone. This group amazes me. I wish I had found it years ago but at least I have now.

I have severe M.E. bed bound 80% of the time and RLS is just one of many crappy symptoms, but a big one for me. I will change to magnesium citrate and add the iron.

I have been on gabapentin and mirapexin for years. Time for a change.