Tips for getting off meds ?

[terrilynn]

I have been suffering from RLS for probably 30 years. I have been on Ropinirole for the last 8 years. my Dr. recently increased the dosage to 1mg from 0.5 after I complained it wasn't working anymore. After researching it myself I learned about augmentation and now I want to wean myself off. I'm back to 0.5 mg and searching for natural cures. So far I'm ordering from amazon an iron supplement and Restless Legs Calming Creme. I would appreciate any input of natural cures that have worked for anyone else. I also have insomnia my Dr. prescribed trazodone. I suspect that isn't helping my rls I'm stopping that also. Any suggestion for insomnia are also appreciated. Other things I'm trying are compression stocking (helps a little) and made a visit to the chiropractor. I have been reading posts here and happy I found this group! BTW I did try stopping requip cold turkey. it was the most miserable nights of my life I ended up in tears rocking back in forth in bed hitting my legs . wow that sounds pathetic when saying it . Sad but true

[keiralee]

I am so sorry and I know how you are feeling because I have just weaned off Mirapexin, which is a dopamine drug like Ropinerole. There are some brilliant people on here who I am sure will shortly give you some good advice. Meanwhile, hang on in there and there will be light at the end of the tunnel !!

[nightdancer]

Hi, welcome. 1 mg is an excellent dose of Ropinerole, but some people CAN augment on doses that low. You mentioned Trazadone. it is a "safe" antidepressant that will not affect RLS in a bad way, it is not an RLS med, (but IS used for insomnia) but can help promote sleep. It is not meant to stop the thrashing. it should be used as a combination therapy. But , you do need to deal with that with your doctor. Even on one mg of the dopamine med you said you were miserable when you stopped it cold turkey. Your brain missed that extra dopamine, the happy hormone, and so when it is stopped suddenly and you have no backup, it is going to be a bad experience for some people. As for insomnia/RLS, we all have to try things, it is trial and error. Always get your ferritin checked, to see what your level is, since it is the only blood test that can be connected to RLS. if you look over to the left side of the screen, look for the post "Non-med treatments". There are 75 posts alone on non-med ideas alone, so worth the time for you to find them and read up. There are a lot of non med posts, so a good suggestion is to go thru them and see what we have discussed. I love yoga, meditation, lots of stretching, heating pads for my legs and my back. Some of us have spent 20 yrs or more getting our "bag of tricks" that work for US together. I also like any sports cream with menthol in it. Any will do, as long as it has menthol.

[Joolsg]

Hi Terrilyn,

Stopping requip cold turkey will be, quite literally, hell on earth. I withdrew from ropinirole (same as requip) in July and August and it was very traumatic. It is not pathetic at all to say it was the most miserable night of your life. After 8 years on the dopamine, every cell in your body would be screaming in protest when you stopped taking requip.

If you can manage with natural cures for the RLS, that would be great. Like Nightdancer says, there are lots of non meds treatments you can try. A lot of people on here have had success with 25mg of iron bisglycinate taken at night on an empty stomach.

I really wish you well and hope the non meds route is a success. Let us know how you get on.

Take Care,

Jools

[connie50]

hi terrilynn you sound the spitting image of me,I also was on repinarole,but not reequip I also had to wean myself of the repinarole,(that's a nightmare) anyway my DR gave me trazadone,(this is an ant-depressant) I found the best for RLS is repinarole BUT it causes augmentation .I am on the patch 2mg + pregabalin, but my legs are still all over the place.(went to see a neurologist this was a complete waste of time I new more about RLS than him) as for the insomnia its bleeding horrible,sorry for swearing, but when you've had no sleep for over a week it makes you swear. I cannot tell you the last time I had a good nights sleep I am up most nights not been to bed to day 27/01/2017 its like this every night, I dread going to bed, most nights I'm very tired but as soon as I lay down I'm laid there for about 2hrs then my RLS kicks in.its a vicious circle.

[nightdancer in reply to connie50]

Ropinerole is the same med as Requip, just so you know. Ropinerole is the generic of Requip.

[Beckonwood]

I was on Mirapex for about 15 years and kept getting the dose increased to the point that I was miserable. I found this website and one on Facebook and found out that it was not a good drug to be on because of the augmentation. Last year I went cold turkey and stopped taking Mirapex and just used Percocet which usually works for me. I take a half a 5mg Percocet around 5pm and another half around 9pm. Usually that works for me and if I start having break through symptoms will take another half of Percocet. It took some time for my doctor to trust me as this drug is so abused. From taking it I don't see why people want to take it because I don't get a high on it and find that it makes my head itch so bad. My husband can tell when I have taken the third half of Percocet because I am constantly scratching my head. I also take trazadone. Usually I take a half of a pill with it also and find that it does seem to help with my RLS. I have heard from some people that it does the opposite for them. So feel that the meds out there affect everyone differently. But I know how you feel about your RLS. Having to explain to others what I am experiencing is often difficult. Now I just say I have a movement disorder.. Good luck in seeking relief.

[Jeanniebeannie]

Hi i dont see people ever being off medication if rls is severe i got told i b on med for life and i do believe thats the case as ive had all my life .soz but thats the story.

[lauraflora]

I have found iron bisglycinate to be a major key, for me (as well as others who post on here) in managing RLS. I have used and/or tried a few other supplements (magnesium is good) but the iron is better, in my own experience. Iron bisglycinate, 25 mg, by Solgar, I take at night before bed. If you take it in the earlier part of the day, it does not seem to be available thru the night.

What I have found (and I have tried MANY things) for sleeplessness/insomnia/waking up and being wide awake in the middle of the night for hours - upon recommendations of Dr. Sara Gottfreid and Dr. Natasha Turner (The Hormone Cure and The Hormone Diet books, respectively), is Phosphatidyl serine. They both recommend taking from 100 mg to 300 mg before bed, to turn off cortisol spikes that keep one awake, or wake one up in the middle of the night.

Phosphatidyl serine is a natural substance that your brain is capable of making, or one gets tiny amounts from certain foods. It is synthesized from cabbage or soy. It used to be made from cow brains, but that was stopped in respect to mad cow disease.

I have been using it for months now, since sometime last year. I started out taking 2 before bed and 1 if I woke up to use the bathroom, just to be on the safe side. Now I just take 1 sometimes 2 before bed and MAYBE 1 if I wake up. But I no longer have those jolt awake episodes, so generally I can just go back to sleep without needing another. There are no side effects. It does not make you sleepy, just relaxed and ready to go to sleep.

One's cortisol is supposed to be high during the day, and low at night. Mine was the other way around. I noticed this occasionally with peri-menopause and menopause, but it came on with a vengeance after a family tragedy 6 years ago, and I had not been able to change that. Until taking phosphatidyl serine. Now I sleep very soundly and deeply, and I don't even feel any little flutterings of RLS (remember I take the iron also.)

I suggest you look it up for yourself. (There is also phosphatidyl choline, but that is different stuff.) I have used a few different brands, all successfully, and one that also had small amounts of phosphatidyl choline in it - a PS complex. But the phosphatidyl serine made all the difference to my sleep.

Hope it helps...

[terrilynn in reply to lauraflora]

your suggestions are definitely worth a try! I looked them up. Do you take the phosphatidylserine and Iron bisglycinate together ? Someone else mentioned the iron should be taken alone. Thank you

[lauraflora in reply to terrilynn]

Yes, I take each of them at night. I might take the iron maybe half an hour before the phosphatidyl serine. It's usually just a matter of convenience, as I take some B-complex and Vitamin C also with the iron. Usually I take them all at the same time, sometimes I split them up so I am not swallowing everything at the same time. I have never had any problem or lack of effectiveness with taking the iron not by itself.

Then I bring the P.S. upstairs with me to put in the bathroom, just in case I need it in the middle of the night. But more and more now, I can just go back to sleep. I seemed to have turned a corner.

[nightdancer in reply to lauraflora]

Am so glad that helps you. Shows how different we all are. The best thing we can do is to research things for ourselves. Good luck and hope it continues.

[maddymac66 in reply to lauraflora]

WITHIN WHAT RANGE SHOULD FERRITAN LEVELS BE BEFORE AUTOMATICALLY TAKING BISGLYCINATE IRON

[Pippins2 in reply to maddymac66]

Hi Maddymac ferritin iron levels need to be over 50 preferably over 70 which is much higher than that of someone who does not have RLS. Some of the experts like it up to 100.Hope that helps

Pipps x

[maddymac66 in reply to Pippins2]

Thanks Pipps I'll get my levels checked.

[nightdancer in reply to maddymac66]

ALWAYS get tested before taking any iron. IF you do not need it, it can cause many problems, none of which are fun.

[Hidden in reply to maddymac66]

Well Maddy have you gotten your ferritin checked or are your doctors putting u off ? You can actually pretty safely try the ferrous bisglycinate for one or two nights then discuss with your doctor. For many people it works from the first few capsules. Then u can begin to lower dose as Terilynn did and still get to sleep. Remember, after a few nights call your doctor and let him know. Normal ferritin is 11 to 300. As long as you're in the normal range then one or two nights of 25 mg of iron will do you no harm. And I would imagine that if you were above 300 your doctor would have told u by now. Do u go for check ups ?

[lauraflora in reply to terrilynn]

Terrilynn, I am wondering how you may have gotten along with the phosphatidyl serine and if it has helped you any. I also would like to amend my recommendation and say that it seems to be the Combination of the PS, with vitamin C and B complex and extra pantothenic acid, that helps the best. Not just one or the other. And taking them several times thruout the day, not just before bed. This is to keep the adrenals calm so that they do not suddenly react in the middle of the night.

Also, it takes time. Not a quick fix, but more of a rebuilding over time. (But watch out for things that can throw you off course.)

[terrilynn in reply to lauraflora]

I'm sleeping somewhat better since taking the phosphatidylserine and iron. I take a B complex in the morning and a multivitamin. I will try taking the B complex at night and add a vitamin c. I'm sure my adrenals are stressed with everything going on in my life right now. I will try your suggestion. I am down to a half of a 1 mg ropinirole. Most nights my rls symptoms are manageable. I have not made it a whole night without ropinirole yet but hopefully with trial and error I will get there. Thanks everyone for your help!

[Hidden in reply to terrilynn]

Hmmm, not acceptable. Is your stomach empty when you take the iron? Can you wait until the RLS kicks in to take the iron? Have you gotten your doctor's permission to take the iron? Can you get his permission to try two capsules (at exact time) for just ONE night to see if that gets you through the night without the ropinirole. Each day without the DA gives your dopamine receptors a chance to heal and repair. I would try taking the serine at a different time than the iron. I doubt this makes a difference but I always open up the iron capsule and pour into a cup of water. It does not dissolve so the residual I just lick up. Not great tasting but I've gotten used to it. If you do this you can actually try 1.5 capsules rather than 2.

Just think how far you have come. Your RLS is now manageable on the .5 Requip whereas before it was not. Once your receptors return to homeostasis the iron is all you might need.

[Hidden in reply to lauraflora]

Speaking of Choline I was reading how CDP Choline increases size (and maybe number?) of D2 receptors. I imagine it would aggravate the heck out of RLS if taken by night. The choline sounds like a dopamine receptor antagonist - just the opposite of the dopamine agonists. One up-regulates and one down-regulates. Maybe the medical community has it all wrong. Instead of prescribing the agonists they should be prescribing the antagonists. And maybe we won't even need iron if we can build up our receptors. Supposedly inostitol (a b vitamin) cysteine, forskolin, fasting and exercise will increase size and density of receptors as well. Possibly taurine too, but not enough evidence. Your serine increases dopamine as does mucuna pruriens so they are natural dopamine enhancers but may lead to desensitization? Good for a quick fix CDP choline is supposed to bring about re-mylenation in early stages of MS according to NIH 2015 experiments. Sadly, not in later stages. Nevertheless we're talking about essential nutrients that have a proven track record. The cavalry isn't coming. If we don't figure these things out, no one will.

[Aaaules]

I recently tried "quiet legs" which worked amazigly and is veggie u can get it on amazon...

[Graham3196]

Perhaps this will help you get off medicines. Of course this wont help with the process of getting off the medicines. I don't know how you transition from the medicines to a diet without some unpleasantness.

I have had RLS for 60 years and it became serious about 15 years ago. I gave up and started taking drugs for it perhaps 8 years ago but all the drugs had unacceptable side effects so I looked for other solutions and eventually came up with the Monash University FODMAP diet that is intended for IBS victims. This has been great and reduced my RLS by say 90% but the lapses have still been there and 10% is still a disruption to real life. I usually blamed any symptoms on eating something at a restaurant or even at home that was not strictly on the diet. The diet is quite severe and I was having trouble re-introducing a decent range of foods so I was seeking more help from another dietician. She suggested that I was on the right track but perhaps the problem either wasn't FODMAPS or included something else as well as the FODMAPS She described these as chemicals. These may be either man-added chemicals or chemicals that are a natural part of the food.

So here I go on a really serious exclusion diet. I wasn't going to tell anyone until I prove it works or fails for me in the long run. I probably already sound like a food crank. Its basically rice and meat with some other allowable foods and you couldn't live on it. It is only intended to allow experimenting with real foods to determine what I can tolerate. The good news is that I started it about 15 days ago and had an immediate improvement and then things got really bad for a couple of nights until the sun burst through the clouds. I have had zero RLS symptoms for the last 8 nights. This is extraordinary for me.

If anyone is interested in trying what I have done I can supply more details. I would say that you must get your doctors supervision because the diet is extreme. There's plenty of food its just that its boring and generally tasteless. As with the FODMAP diet its cheap (other than a few visits to a dietician and a doctor) and no-one else makes a profit. All the food comes from the supermarket.

I started getting cramps so I have added a Mg tablet in the morning which seems to have stopped the cramps. I have continued with the ferro di glycinate at night about an hour before bed. (90mg) I am also taking fish-oil, vitamin D and glucosomine for sciatica and arthritis. Incidentally the fish oil and glucosamine really work for my arthritis. I have taken them for years and they seem to be neutral for the RLS.

I am trying to re-introduce foods now and I have added one orange a day for the last two days with no ill effect so far. Fingers crossed. Tomorrow I will add a pear and then Saturday a piece of chocolate. My next dietician appointment is about a month away.

I will keep this forum informed on the longer term but this might help others.

[Autigergal in reply to Graham3196]

Since this post is 2 years old, I’d love to get an update from you before doing some research. Thank you!

[Swissymom]

After a nutty PA put me on Klonipin for RLS over 30 years ago, I went from 1mg. to 3 mgs. My present doctor weaned me off of it very very slowly. She said back then doctors were prescribing it like candy. They had NO idea how addicting it was. I'm off it now, but I was wishing I was dead while I was weaning off of it. Total detoxing. So she put me on Ropinerole and I only took two pills and was violently ill, throwing up, cold sweats, shaking, just like I was detoxing all over again. Now I am on a low dose of Trazodone and its relaxing me a bit, but my legs are still going nuts everytime I do relax. I have insomnia. I probably don't sleep over three hours a night. Any suggestions

[Heatherlss in reply to Swissymom]

Sorry to hear that you're struggling. However, I'm glad you had one medication work for you for so long. Meanwhile, I would suggest you post this as a separate post because that increases the visibility and some more people might be able to chime in and give their suggestions. This is the best place for RLS well other than Dr Early or Dr Buchfuhrer.