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Restless Legs Syndrome
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Losing my mind!

I have rls in my feet, legs, hands and arms. It has gotten out of control. Requip was not working after about 6 years. Just started Sinemet 2 days ago and it is doing nothing. I twitch about 20 out of 24 hours. I have been getting , at most, 2 hours of sleep with occasional 5-10 minute dozes. I don't know what to do!

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Cut down on the sinemet. That is a DA, a dopamine agonist like pramipexole and ropinirole, but much stronger. And it leads to augmentation real soon. Given you have been on ropinirole that ceased working and from the symptoms you describe, you are in full-blast augmentation.

See rls-uk.org/augmentation-reb...

The only way out is to wean down slowly, and I mean slowly. It will exacerbate your symptoms (if they can get worse). And you may need/want the help of a strong painkiller like tramadol to get you through.

Use the search function of HU and search for augmentation and DAWS (dopamine agonist withdrawal syndrome); there you will find a.o. several recent good posts/replies from joolsg with good and fairly complete info and her own experiences.

Oh, and don’t forget to arm yourself with info and talk to your gp or md asap to get help during this.

By the time you have reduced your dose to a minimum, it is time to start an alternative rls med, like gabapentin or pregabalin. They need to be titrated up slowly to get used to the med and to avoid side effects as much as possible. And also to find the dose that works for you, as we are all different in what works.

Good luck. And keep coming back for help, support, to moan or report results. If you want.

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Thanks! I don't know how to get any sleep. I have Tylenol with codeine but it just makes me sleepy and twitchy. Tramadol didn't work well with something else I had been taking so I stopped it a yeat ago. I have some gabapentin so I will try that. I will deal with the dizziness if it helps at all. I have to stand or walk all the time and I'm soooo tired.

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Hi,

I'd like to tell you reg. codeine. Some doses of codeine will not work because not all people have this enzyme needed to make it work. I learned it the hard way taking tylenol 3 which did not do nothing for my disk problem and I was really in pain. But what worked was over the counter, humble acetaminophen with codeine 5-6 dollars for 200 pills because it was less. I talked to pain specialist and she told me about this phenomena.

I can't help you with heavy caliber meds you are playing with and at some point all of them will not work unfortunately, that maybe bad news for you. And doctors are not the people to tell you this and they won't, they do their best they can accordingly to the guidelines. But can you not see where you going with this? More meds, no? Well than be ready for more pain, if not now than in a few years. What to do? Wean down meds slowly, use all alternatives you can possibly read about. For now 1 month of hell for sure, sorry to tell you, than try what ppl say, basically your free ride is over. If you get on second ride like that .... well you'll see

regards

B

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Well thanks for your great support for siameezmom. :(

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Some people can take their meds for years,. This is a big puzzle as several issues going on here. Not ALL meds stop working, there are some good one, if the dopamine meds do not work, you know, B.

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I tried Tramadol and after about 5 months has such augmentation that one night I was literally rolling on the floor next to my bed. It was awful. My doctor told me Tramadol does not have codeine but the body transfers it into codeine. I am back on Percocet and it works fairly well. I am now on 2 pills which are 5 mg and cut them in half and start around 5 or 6 pm taking a half then space the rest out through the evening. Around 10:30 or 11:00 I take a half a Trazadone. Most of the time it works fairly well but would like to have it work a hundred percent which it doesn't. At least it does help so I can get some much needed sleep. I am hoping that there will be a cure in the near future because I as all of you suffer tremendously over this terrrible. RLS

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Are you on any other medications? Quite a few, including antidepressants and otc cold remedies or ant-allergy meds exacerbate rls in most people. If you are, look on the rls-uk website at the treatment page; it also lists meds to avoid.

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Prozac made my RLS unbearable I wish Drs could understand how awful it is and you feel like you want to bang you’re limbs so hard but nothing stops it .I hate this condition isn’t it enough we fibro a lot of us do and that’s really painful . X😇

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Unfortunately I have lupus and depression so I am on a ton of stuff. I'm getting some iron today to add to the mix. I have tried to cut out meds that irritate it. My current antidepressant is one of the few that doesn't.

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Gabapentin won’t work until you’re off the sinemet and through withdrawal. Trazodone is one of the few anti depressants that doesn’t make RLS worse. Anti histamines also make it worse but in the UK, Claritin is alright.

Your GP should not have put you on another DA when you had augmented on Requip. You will augment quickly - in your case it’s happened immediately. The tramadol would help reduce the twitches. What dose of Requip were you on and what dose of Sinemet are you now taking?

Withdrawal takes a long time ( months) and you should reduce very slowly.

Have a look on here and you’ll see at least one person is on here every day going through the same as you.

It will be hard but it is possible and worth it to get rid of that all day, all over body constant RLS twitching.

Pregabalin is better than Gabapentin so ask GP to prescribe it when you are in the last 2/3 weeks of withdrawal from the DA. It will only become effective 2/3 weeks after you’ve taken the last DA.

Having Lupus will make it more difficult but you’ll still manage it with your doctor’s help and come back on any time to let us know how it goes.

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What antidepressant are you taking? There are 3 that will not make your RLS worse

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Right now it's Pristique

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So you are on one of the newer ones. sad to say it can send your RLS the the roof, BUT you are definitely going thru augmentation. 12 mgs of requip is absolutely not ok, and is 6 times the current recommended therapeutic dose, Suggest STRONGLY that you read that article Allaying Augmentation if you have not already. You have a lot going on, but 12 mgs of Requip is unacceptable for an RLS dose, in any world. You need to talk to whatever doctor got you up that high on the dose and get it lowered. Things will not get any better if you don't. That , I think , is your MAIN issue right now. The antidepressant could be replaced with Mirtazapine (my ant-d of choice, and for most RLSer's who need one. Stopped my panic attacks and also I have PTSD) Been on it for 6 years now, and it is in a class by itself. Trazadone can help, it promotes sleep and is taken at night. have you tried Wellbutrin? That is the other "safe one". As Pippin said, if you can let me know what state you are in and how far you are willing to travel, I have a list of doctors I use for my groups, and we could find you one that could help, if your neurologist does not. I have been at this for 27 years with support groups, so I have picked up a lot of doctors and am pretty good at finding them for people. So just a suggestion. :)

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See if you doctor can give you an opioid. I take 5mg 2x a day and I do sleep about 5 hours. I also augmented on everything else, nothing works anymore for me either.

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An opioid doesn’t easily help - or only in large doses - when you are augmenting and din’t cut down on the DA.

If you “are on an ton of stuff” it may be a good idea to review your meds with your doctor? But bring the info on meds that exacerbate rls; not many docs know. A good site re meds to avoid is also rlshelp.org. Somewhere rather low on the treatment page.

@siameezmom Sorry to hear about your lupus and depression. I already find rls often rather difficult to deal with, and you have quite a bit more on your plate! I hope that at least the rls will get better pretty soon.

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I pretty much keep up on which meds irritate it. I've had to tell them what I can and can't take and sometimes have to play with the dosages if something irritates it. I was on 12 mg ER ropinirole. I'm on my third day of the Sinemet, the low dose one. I've even tried taking a couple of Tylenol 3's in hopes something will just knock me out for awhile. I'm so tired I can't see straight and this twitching goes all day and night! I just want some sleep.

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Wow, that was a very high dose of ropinerole you were taking Nothing will help you until you are through the augmentation, as Jools has said. You really need a strong pain med to help you through this, and wean down very slowly as has been said, you need to get wean off the Sinemet. You augmented on that high dose of ropinerole and now the Sinemet. Take notice of Jools advice. Its not an easy process but worth it. Get to see your doctor and give him/her the info on augmentation and you need help to wean off your DA. Good luck, keep us informed.

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Oh good lord Siameezmom no wonder you are going through hell. 12 mg is negligently high- the doctor who gave you that much and then switched you straight to low dose sinemet clearly knows absolutely nothing about RLS or how to treat it. If you have stopped 12mg of Requip 2 days ago you are effectively going through withdrawal cold turkey.

My advice would be to go back to your doctor tomorrow and stop the Sinemet and go back on the 12mg dose of requip ( get 12 x 1mg pills) and THEN start to reduce by 1mg every 2 weeks with the help of a strong opioid painkiller like tramadol or oxycontin. As you are in Augmentation you will get no relief until you get off ALL Dopamaine Agonists.

I assume you are in the USA as you talk about Tylenol ( we don't have those here in the UK).

Print off the articles on this website about Augmentation and show them to your doctor. Tell him you will not make it through cold turkey withdrawal from Requip ( no doctor should even consider allowing their patients to do that- especially when you also have Lupus). You will need an opioid ( I know it's very difficult in the USA but point out to your doctor that it's essentaial during withdrawal and once off DA you can reduce the tramadol/oxycontin).

When you are down to the last 2mg of Requip then you can start taking an alternative medication like pregabalin ( and increase slowly up to around 150mg in the first instance). Pregabalin is an effective med for RLS. It will be around a monthe after the last dose of Requip that you start to feel better. It's really hard, but you can do it.

Have a look at Bganim on here. She was also on 12mg of ER Requip and she has successfully come off it and is now on Tramadol and Pregabalin. She is in the North East of the USA.

I am really sorry that you have been left in this state by your doctors. The maximum dose of Requip now for new patients with RLS is 1mg.

We are all here for you, so let us know how it goes.

Do also get your serum ferritin checked ( it needs to be above 100) and start taking ferrous bisglycinate at night . This won't help until you are off Requip/sinemet.

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OMG! That is a mega mega dose. Good advice from Joolsg, Elisse, LotteM and pippin2, please take it with you to your doctor. My doctor took it all on board and admitted most doctors know next to nothing about RLS or the best way to treat it. Hope you get the help you need. Wishing you all the best. X

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Where abouts in the States are you? I will do my best with help from Nightdancer to find you a Neurologist or Sleep Doctor who knows how to treat RLS. Whoever put you up to 12mg of Ropinerole and stopped you on it suddenly needs striking off in my opinion. Don't get on here too often but this has made my blood boil! Get into the bath so you can kick your legs and move your arms without having to constantly pace. Beg, steal or borrow a swim ring to put around your neck incase you manage to get at least a few minutes sleep. When this happened to me ended up at ER being given high doses of opiates to knock me out. So sorry your doctor has allowed this to happen. Get information from reliable sites eg rks'uk and rls help. Keep coming on here to talk to us, hold on there will be light at the end of the tunnel. Hugs -get in that bath . I agree with Jools go back on Ropinerole and wean very slowly x

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I was gradually increased to the 12 mg because of how bad I get it. I have neuropathy which I think makes it worse. I just want to get some sleep. I will call my neuro back on Monday to let him know the sinemet isn't cutting it. I will try an extra codeine or two to try and kbock myself out lol. I'm so tired of standing and walking.

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That is augmentation where you have to keep upping the dose. Please put augmentation in search. Basically the med is making you worse .x

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As pipps has said, augmentation comes from keep increasing the dose. Firstly your dose stops working and your symptoms feel worse, so your doctor thinks he will have to increase your dose and it works, for a while, then its back to its stopped working your symptoms feel worse again, so back to doctor who again thinks he must increase your dose. Your doctors thinks you are the worse case he had seen, and its only because of the increasing the dose and the augmentation which comes from it. Its not something i have gone through, but i know many many people who do, and i can feel their agony just by reading their posts.

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OMG you must be so exhausted! Tramadol works for me. Maybe it will help you. I went through Sinemet and Reauip and the usual meds before trying Tramadol. Hope you find some relief.

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Thanks everyone. It's so good to know their are people who understand this awful thing.

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Search for Allaying Augmentation and send it to your Neurologist x

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Could anyone put Allaying Augmentation on here please i am a technophobe x

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Is this what you mean?

sleepreviewmag.com/2015/02/...

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Yes thankyou Docundy x

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EVERYONE needs to read this, so they know the dangers of being on too high of a dose of dopamine meds. The meds that help you in the beginning, (dopamine ONLY) can come back to bite you if the dose keeps being increased. MORE is not BETTER. Requip/ropinerole, MIrapex/pramipexole, are the main ones. Sinemet can turn on you FAST.

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I am so sorry you’re going through this. Coming off of Ropinerole was one of the worst things I have ever experienced. I did take a low dose opioid that helped. I was given Valium after I hadn’t slept for days and days and honestly even that didn’t knock me out. I feel like a new person now it’s over. It makes me angry that I was on it and in pain from augmentation for so long without knowing what was happening. My pain is a million times better now. Hold on. It will get better I promise. xx

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I cannot imagine how bad 12mg of Ropinirole is to get out of your system!! I am having a horrible time coming off of 0.5mg 2-3xday plus a 2mg cut in half for a long time and I also have taken Klonopin 1mg at night (but I have had prescription for 3x day for that too for long time). I have been cutting the 0.5mg of ropinirole in half and I am keeping a written log every time I take a pill at all....I am in my second week and it's HELL!! I have tried EVERYTHING and I am in the bathtub with Epsom salts water sometime in the middle of the night and during the day too. The jerking is HORRIBLE...I have some 50mg Tramadol but I don't know if I should take it as long as I am still taking Ropinirole too??? I have no idea what to go on next?? I am taking every kind of vitamin plus iron and magnesium (my iron was not high enough last blood test)...I have to watch with that too because I have IBS and I get diarrhea very easy!!! I am so sick of "SYNDROMES" I am at my wits end!! I sympathize with you completely and all I know to do is stay here and keep posting and reading because I have experienced that doctors don't get it at all most of the time when it comes to RLS!! They keep increasing Meds and that only is making us worse??? I don't get it?? Thanks to every one of you here that help us so much!!

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Hi Sunshine

I wrote to Dr Buchfuhrer when I was in the middle of withdrawal from Ropinirole. He advised me to take 50mg of Tramadol every 4 hours during the stage where I was unable to sleep, sit keep still because of the constant jerking of RLS and withdrawal . It was only for about 5 days and it allowed me 1-2 hours sleep.

I would take the tramadol to get a little sleep. Massage helped me as well- my husband stayed up with me for 3 nights when withdrawal was at it’s worst. He massaged my legs with magnesium oil and I actually fell asleep while he was doing it.

What meds will you take once off Ropinirole? Pregabalin is very effective and takes about 2 weeks to be effective.

If you have IBS you may not be absorbing Iron properly so may be anaemia ( which causes RLS). Your serum ferritin needs to be above 100.

My daughter had IBS ( or so doctors thought) last year. She bought an expensive probiotic called Symprove and it really, really helped. She no longer has anaemia and her IBS symptoms resolved. She also followed low FODMAPS diet for a couple of months.

Keep going- reduce by 0.5 every week and take the tramadol to help reduce the constant jerking.

You will get through it and things will be better. So many of us have been where you are now and know what you’re going through. It is hell but once through the other side, you will find things improve.

You’ll need other meds to control the RLS once off Ropinirole so talk through the alternatives with your doctor. Some people manage on 50 mg tramadol twice a day, others on up to 2700mg Gabapentin or up to 300mg Pregabalin.

Controlling your IBS will improve iron absorption and that will help your RLS enormously.

Take care

Jools

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Hi sunshine. I feel for you. What you and siameezmom go through sounds like absolute horror. You say you take 50 mg tramadol. That was enough dor me coming down from 0,75mg ropinirole taken during several months only. I know jools took much higher doses. Will your doctor prescribe you more? Temporarily? As long as you go through this withdrawal phase? And of that doesn’t help will you be allowed the stronger oxycontin? Please don’t give up.

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LotteM, I have the 50mg of Tramadol and I just was afraid to take it along with the Ropinirole while I am trying to get off of the Ropinirole ... I am cutting the 0.5mg Ropinirole in half now and I am going to take the 50mg Tramadol too. My Doctor will give me more Tramadol and actually my doctor is open to try about anything I can come up with that will help me...I just think that doctors don't know enough about RLS and can't understand why "more mg drugs are not the solution". Thank you so much and please keep me informed of ANYTHING that you all can think of that will help me and others here get through this horrible time!!

Thank you so much!!

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You’re welcome, Sunshine. And I assume you include all others as well, because here we provide a concerted effort to inform each other.

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I INCLUDE EACH AND EVERY SINGLE ONE OF YOU WONDERFUL PEOPLE ON THIS WEBSITE!!! I COULD NOT MAKE IT THROUGH ANY OF THIS WITHOUT ALL OF YOUR HELP!!! I THANK EVERY ONE OF YOU FROM THE BOTTOM OF MY HEART AND SOUL!!!

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Wow as others have said that is a huge dose and it's very likely augmentation. Definitely agree with the other suggestions here.

Make sure you're not in withdrawal from any other drugs, cut out any stimulants, check you aren't taking any medications which can worsen RLS (SSRI's, Antihistamines)

You could also try a cocktail of herbal medications on top of your prescriptions which won't solve the problem but could provide some added relief.

I would try:

Iron Bisglycinate - 28mg

Vitamin C - 1000mg

5-HTP - 250mg (Do not take if you're on SSRI's)

L-Theanine - 400mg

GABA - 500mg

Iron is the most common deficiency in the world, without enough iron your body isn't able to properly regulate branched chain amino acids in the blood brain barrier which compete for entry into the transporters against neurotransmitters. By adding enough iron, you will ensure that your body can produce enough serotonin and other neurotransmitters so that your body can properly regulate it's self.

Iron Bisglycinate, 14mg taken twice daily with food will help to rule out an iron deficiency. Take 1000mg vitamin C with it as this will help with absorption of the iron.

5-HTP will help your body to produce more seretonin which can reduce stress and lessen the RLS.

L-Theanine will also help to reduce stress.

GABA is a funny one, as it doesn't pass the blood brain barrier, however when I takle it with 5-htp I am sure it has an extra effect, so I would say try it.

Lastly, is Cannabis legal where you are? It can provide very effective short term relief.

I hope some of this will help to take the edge off.

I wrote a post here about everything that's helped / not helped me.

healthunlocked.com/rlsuk/po...

Best of luck.

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Thank you so much for all your information!! I cannot survive this without you all here!! You are all so much help to me right now and I appreciate each one of you more than words can say!! I am at the desperation stage!! I am fighting so hard to get through this and I have been going up and down with RLS for so many years I have to find a light at the end of the tunnel because I cannot live like this anymore!!

Thank you so much I appreciate everything you all are doing for me!!

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You're most welcome. I know how awful it can be. It may be a long road, but it'll get easier, try to keep soldiering on :)

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Hi, sorry to hear the difficulties you are enduring. I know them well. I am in the midst of withdrawal from strong and frequent doses of Pramipexole. It has been about 14 days since I stopped it ( I would not recommend stopping it, as I did the symptoms get far to bad). I am beginning to see some light at the end of the tunnel. It starts about 7 PM and lasts till about 5 AM with varying intensity. Could not get ANY sleep. Finally, a Dr. that really does not know about RLS, despite the fact that his wife has a bad case of it, suggested Klonapin at night for sleep. He gave me a 2 mg Rx and the first night I slept 12 hours straight. Was groggy the next morning so the next night I took 1/2 pill and finally took the other half since half didn't work. Again, slept like a baby. I am trying to make it to March when I have an apt. with RLS specialist at RLS Clinic. I have not heard anything about this drug , so it is kind of a shot in the dark, but it surely worked for me.

I sincerely hope you find some relief, soon.

Bill

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Bill, I have taken Klonopin on and off for years. You should be fine with it until March but it's not a drug that you can stay on either. Thank God it is letting you sleep for now with 2mg at nighttime. Good luck with your RLS specialist at RLS Clinic and please share what you find out when you go there because hopefully there is something they can do to help you. Look forward to hearing all about your experience with that!!

Sunshine458

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Bill if you haven't heard much about Clonazepam then make sure you do some research on Google. It's a Benzodiapepine and the withdrawals associated are among the worst of any drugs in existence.

Personally I would only use once every 10 days max, for when the RLS is at it's worst.

All the best

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I was the same. My Neuro put me on Horizant. I take 600 at 5:00 and 600 at 7:30. Most nights I sleep okay. First for me in many years. I had tried everything. Hope this helps.

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