rls

[suszie]

Hi my name is sue and i have had restless leg syndrome since i was about 14, i am now 55, it drove me nuts for years, my husbands cousin came to visit a few years ago and while she was there my legs were playing up, she said she suffered with the same thing and that she had gone to the doctors about it and that he had prescribed quinine bisulphate, i did the same and they work brilliantly, although i have to admit that i have to take 1 tablet earlier in the day now as for some reason they are taking longer to work

[Hidden]

Hi Suszie, Welcome to the forum! I have also had RLS for many years , having a bad night tonihht 5am and still pacing! I am surprised Quinine worked for your restless legs as that is used to treat cramp.Cramp is muscular and RLS is neurological 2 different conditions. Are you in th UK ? In the US Quinine is no longer prescribed for cramp only for Malaria as it has been linked to heart problems.

Can you clarify is it RLS or cramp you suffer from.! Do you have the urge to move your legs? Sorry for all the questions!

[suszie in reply to Hidden]

Hi, no problem with the questions, it is rls, yes i live in uk, i cant cope with the movement in my legs sometimes, i try to walk around when i have the feeling, but as soon as i sit down its there again, the creeping sensation, the jerky movements, i hate it.

[Hidden in reply to suszie]

Suszie, there are serious health warnings associated with Quinine so I am concerned you are on it, How long have you been using it?

[suszie]

Hi i have been using it for about 10 years, its not everday i take them, i only take them when i need them, although i have to say it has been everyday for the last few weeks, you see i sometimes find(which is a great relief) that i go a few nights here and there that i dont get it, sometimes i get it lunchtimes, but mainly its around the early evening then i find the only way i can cope with it is to take the tablet earlier then i relax, it doesnt wake me at night

[Hidden in reply to suszie]

Quinine is a great dopamine agonist, that's why it works. And like any good dopamine agonist there's a tendency to develop augmentation. I don't know enough about the side effects...meaning at what dose it becomes dangerous. Quinine is one of the all time great substances found in the Amazon..it's a fever reducer, pain killer, anti-inflammatory and anti-parasitical. And should probably be used as a last resort like all dopamine agonists but you really have to find out at what dose the potential poisoning kicks in. It was pulled from the market because of side effects (and maybe not much money for big pharma), not because it doesn't work. Since you don't get RLS everyday try to see what if anything starts it up. Try to see what else is going on with you when it's really bad and then maybe quinine can be relegated to the occasional party drink.

[Hidden in reply to Hidden]

I have never ever heard or read any where that quinine is a dopamine agonist. It should only be used for malaria. Read the post of Nightdancers about quinine. I dont think it was pulled off the market, just given a black box alert for use. I wouldnt recommended anyone take quinine...!

[nightdancer in reply to Hidden]

It is dangerous at ANY dose. Has nothing to do with big pharma, Tcho (terraverde). So, you are back. It is very hard for you to hide your 'style" you know. And, your statement about "Quinine is a great dopamine agonist", I am glad you clarified with that link and that it is only one kind. My point with Quinine is that it is not to be used in the USA for anything but malaria, was never intended for use in RLS, and the FDA says QUOTE-"The risks outweigh any benefit you may get for LEG CRAMPS." Uncontrollable bleeding and death are pretty serious side effects, in my humble opinion. Everything I have read except the one thing you sent in, says that Quinine can block many, many receptors in the brain, and that includes D1, D2 D3 D4 D5 and on and on. So let's not generalize on that. The point is, Quinine is not safe, it is never sold over the counter in the USA, it all had to be pulled from the shelves, and has the strongest warning that the Federal Drug

Administration can give out. I do not how to make that any clearer, terraverde, oh I mean Tcho.

[Hidden in reply to suszie]

Let's clarify that, it's a very specific part or purified form of quinine, called quinolone, that is the dopamine agonist. ncbi.nlm.nih.gov/pubmed/230...

[Hidden]

From the way you describe your symptoms yes I ahree certainly sounds like RLS.I have no explanation how or why Quinine works for you as it shouldn't! lol

RLS is progressive so that would explain your symotoms getting worse.Are your legs playing up now as its 5.30 am in UK?

[suszie in reply to Hidden]

Hi, no i think i have insomnia, ha ha , i have a few problems with my arms and legs ( legs mostly) i get tired very quickly and i tend to go to bed very early, then i am awake very early, its a general routine with me it has been for a long time. i suppose i started going to bed early to try and ease the rls.

[Hidden in reply to suszie]

am opposite normally go to bed very late but only managed to stay there 10 mins tonight.It is unusual you goingbto bed tkntry to ease your legs as that normally is when they get worse! Anyway got to go battery nearly flat, Not shut mybeyes yet going to try hot bath, Goodnight orvis Good morning! Ha ha x

[Hidden]

Excuse typos

[suszie in reply to Hidden]

no problem

[suszie]

good night and goodmorning

[beady3]

Hi Suzzie ,hope you get some help from this site. I had rls very bad just like you the pain walking about driving you mad,I am surprised quinine works as it is for cramp and it sounds you prob is rls. I am on Tramodol and its best thing I have ever had ,I get good nights sleep and no rls at all, go to doc armed with some imformation about the prob, you will get there ,please try something else. Beady 3 x

[suszie]

Hi beady3, thanks for the message, im am a bit concerned about getting tramadol, my mum was prescribed them for the pain in her legs as she had ulcers, and she haluccinated on them.

[nightdancer in reply to suszie]

My mother can not take ANY pain meds, but I have no issues with any of them at all. Tramadol is a synthetic opiate. What is bad for one person is not necessarily bad for the next one, even if it is your mother. My mother canot even take a half a codeine, but I take morphine (extended release) and Vicodin every day for back pain and it stops my RLS 90% of the time. Tramadol was GREAT for my RLS, so I can only tell you what I do. The tramadol crapped out on my pain issues (many surgeries, broke my back at 14) so that is why we are up to Vicodin and morphine. Also, suszie, what country are you in? It makes a big difference with meds and what is available in each country.

[Annie55406]

Question Here : In quinine bisulphate a prescription drug, or can one get it without a prescription ? Also, how long did this drug take to work for you ?

I look forward to receiving your response !

Sincerely,

Annie55406

[suszie in reply to Annie55406]

Hi annie yes i do have it on prescription, they give me quinine bisulphate 300mg. when i was first put on this drug it worked within the first hour or so, although now they seem to take up to 4 hours, it is not available as a non prescribed drug. it does have possible side effects though

[Annie55406 in reply to suszie]

Thanks for your very speedy answer, Suszie. I shall ask my physician about it.

Take care !

Annie

[nightdancer in reply to suszie]

severe side effects. It is almost illegal in the US, only for malaria. I would think long and hard before taking this medication at all.

[nightdancer in reply to Annie55406]

In the USA, Quinine is banned except for use in Malaria. It can cause severe heart damage and it has the FDA's strongest warning on it. It hardens the wall of the heart and is NOT for RLS, and like others have said, it should not work for RLS at all. It is dangerous, and was only intended to be used for leg cramps, not RLS. The UK is a little behind on this one.

[Pinkprincess205]

I was also given quinine for rsl a few yrs ago. It worked for a while but came off it as wasn't working anymore. I wasn't given anything else to help.

I also take tramadol for other pains, I think I got side effects for the first wk but after that I get no side effects n Iv been on them 4 yrs now. I still get rsl tho. Not every night luckily x

[suszie in reply to Pinkprincess205]

Hi i have taken co-drydamol for other pain and they made me feel really sick and as far as i know tramadol are even stronger, so i dont think they would work for me, its sounds like people are suffering worse than i am, as i get no pain with the rls its just the really creeping sensation and the jerky movements, i will say though after i have taken my quinine roughly 4 hours before i go to bed there are times when it has not gone off so i stretch my legs for as long as i can ( till the muscles hurt) lay on my left side, then curl up my legs with a pillow under my feet to tilt them upwards.( i think maybe im a contortionist lol. but sometimes it seems to work. i am willing to try anything to make it go away.

[Hidden]

All the research i have done says that quinine doesnt work for RLS. It works for cramps. but not RLS. Even now its recommended not to be used for cramps as quinine can cause heart problems.

[nparks in reply to Hidden]

Hi Elisse, they say that Quinine is also in tonic water, but smaller amounts

[Hidden in reply to nparks]

Hi nparks, yes quinine is in tonic water and as you say very small amount. You would have to drink an awful lot of tonic water to have the quinine give any health problems.

[craftinglil]

thanks for the tip, Yve suffered rls for several years then my husband found this on the www

One teaspoon full of Cream of Tarter in a glass of water. After years of trying to find something I now take this and the rls stops. Might not help everybody but worth a try.

[Lindy14 in reply to craftinglil]

Hi Craftinglil,

It just shows that some things you don't need a prescription for can have a good effect. When mine started I tried a couple of things like massage. But these didn't last for long. I also found by laying with my legs up in the air for a while stopped the jerks and the sensations. But again, these didn't work full time so I went to my GP who was "very Helpful" (NOT). She said "the only thing I can offer you is AntiParkinson drugs so you'll have to try and find your own solutions".

I tried to cope with the sensations while finding other remedies. The topper mattress that kept my thighs cool worked a treat for about a year but then didn't work by itself. I still use this as well.

Eventually finding that I couldn't get anything to stop the agony and lack of sleep I went back to the GP and to my delight found that the GP had retired.

The other GP tried Ropinerole. It worked for over a year, absolute bliss!, but then stopped working even when taking the maximum dose the GP recommended. He had said that if it didn't continue to work to go back to him. Went I saw him he referred me to a neurologist who started me on Pramipexole which is now working.

What I also like is that doctors credited me with some common sense. The tablets don't work for a full 24 hours and the jerks start when I'm sitting for any length of time so I take a tablet 2 hours from when I know I have a period of sitting down for a long time e.g. as a passenger on a long journey. They've even built this into the prescription dosage. Sometimething I've not seen before.

[Hidden in reply to craftinglil]

There is definitely something to Cream of Tarter/potassium. Some people with RLS swear by bananas and then some find relief for a few days from bananas and then not. I always wonder if it's because they take the banana earlier in the evening or with food that may interfere with the potassium. Not much interferes with absorption of potassium that is in the right form, our bodies suck that potassium up and it goes right to the bloodstream and supposedly potassium will evoke the release of dopamine so it's a dopamine agonist of sorts. And potassium channel blockers are dopamine antagoinsts. So it all makes sense. The thing with cream of tartar/potassium is that our bodies excrete it via urinary tract pretty quickly. 6 to 8 hours later it's gone from your system and the dopamine too I guess. Absolutely worth a try. And a good form of it is a must. Those huge potassium horse pills that doctors prescribe when you're on diuretics I am not a fan of. I think you are definitely on to something Crafting! I remember reading how doctors were literally obliterating the potassium channels in a very specific part of the brain of Parkinson patients. Not a cure but to control symptoms. Were they doing this to flood their brains with potassium? I don't know but it seems like taking cream of tarter (even if it only lasts 6 to 8 hours) is better than obliterating the channels. Plus potassium hit it's lowest levels in our bodies at midnight. But that means it starts waning at bedtime. So maybe that boost of potassium at night is just what the doctor should order.

[SH55]

I've found amitriptyline very successful for RLS.

[Hidden in reply to SH55]

This is very unusual as for the vast majority of RLS sufferers it will make symptoms much worse.Glad it works for you but it is the last med I would suggest to use.

[suszie]

Hi there are so many different medications used to try and combat rls, does it depend on the individual's metabolism? i am only asking as people seem to get short term relief from these different medications. Then bang its back with a vengeance, i have been on the quinine for ten years give or take, when i first went on them they were wonderful but now as the years have gone by they take more time to work, does this mean that i am getting immune to them and eventually they will not work at all

[Hidden in reply to suszie]

Hi Suszie, I have not heard of a persons metabolism having any connection to which meds work for RLS and which dont.Sometimes sufferers get augmentation with dopamine drugs so they stop working for them and work against them.Sometimes people build up a tolerance to certain meds.As I dont understand how quinine are helping your symptoms I cant say whether or not they will stop working for you.I know people do still take quinine for leg cramps and as far as I knowvthey dont become immune to them, With the health warnings I woukd not take quinine,.I dont need to anyway I dont suffer with cramp,

I guess your RLS symptoms are worsening as it is a progressive condition .

[Hidden]

If anybody gets given quinine by their doctor to treat RLS, then their doctor doesnt know alot about RLS.

Quinine works on the muscles of your body which is why it works for cramps. RLS is neurological.

If you have cramps then try magnesium, it seems alot of people get relief from taking that.