Restless Legs Syndrome
10,175 members6,289 posts

PLEASE HELP ME TO KNOW WHERE TO TURN NEXT! ROPINEROLE WITHDRAWAL AND I CANNOT TAKE IT ONE MORE DAY!! I AM OPEN TO ANY ADVICE PLEASE!!

I have posted and many wonderful people here have been very helpful. Today is my 30 day of trying to get off Ropinerole and I am completely dis functional ... I have tried everything I know to do and I am a total wreck!!

I went to my doctor on Tuesday and this is Sunday ... I tried to explain to her what is going on and all she wanted to do was raise my mg of Ropinerole ... When I convinced her that was not going to work (I have taken Ropinerole in different mg for 15+years) ... She reluctantly gave me gabapentin 100mg and said "take one 100mg gabapentin before bed and you can take it along with Ropinerole with no problem"...WRONG!!! She refused to give me Tramadol or codeine or anything like that. The gabapentin 100mg did nothing but make me very dizzy and I jerked horrible throughout my entire body.

I had weaned myself down to 1/2 of 0.5mg of Ropinerole about one time a day...now in the last 2-3 days I have been so bad that I am still cutting the 0.5mg Ropinerole pills in half but I am taking them 3-4 times a day and I have not taken gabapentin again after the first pill.

It's been the weekend so I have not been able to reach anyone if I could I actually don't even know where to go or who to call at this point????

I cannot go on like this I cannot function I can't sleep and I don't know what to do next???

I have Clonazapam 1mg that I have been reluctantly taking because I had withdrawal from this drug years ago and it was a nightmare too.

I have tried everything I know to try from Epsom salts baths to magnet mattress pad to iron (slow FE) recommended by the GP Doctor and as many vitamins as I can possibly swallow ... I am supposed to have blood work done the first week of March which is only days away but I don't know what that is going to help either??

I would love to be able to do something that is natural and get away from prescription drugs because everything seems to have so many side effects and nothing lasts long...I feel like a hypochondriac and to tell you the truth I am embarrassed to go around people because they have no idea what I am going through...even the doctors!! I have been to neurologist and they just want to give pills that I have already tried over the lifetime of this horrible RLS and they basically act like it is no big deal either.

I am 68 years old I weigh about 135 pounds and I am a female...I have suffered with this as far back as I can remember.

Ropinerole has had a horrible impact on my life too...I have spent thousands of dollars...I just went through divorce last year...I am miserable...ashamed and embarrassed!!

Thank every one of you here for listening and I do feel that you are the only people that understand at all what I am going through!!

Sunshine

63 Replies
oldestnewest

Sunshine, you’re not a hypochondriac and withdrawal from ropinirole, or any dopamine agonist IS horrible.

A few things. First, you CAN take gabapentin along with the ropinirole. This info comes from the book by drs Lee, Buchfuhrer et al on Clinical mgmt of RLS. Second, you need to give your body time to adjust to gabapentin. Like you, I usually react to already low doses of meds. It took less than a week for me for the dizziness asspciated with the gabapentin to subside. I also started at 100mg of gaba. Third, 4 half 0,5 mg of ropinirole is 1mg over the day. Can you try to change that to 2 0,5 mg, eg afternoon and evening? Maybe each dose will then be more effective and the rls will be a bit better to deal with for several days. Then try to drop the afternoon dose. It is hard anyway so you may as well go a bit more towards’cold turkey’. Fourth, keep taking the clonazepam if you have enough, esp in the evening - it may help getting you some sleep. Fifth, print out several papers and leaflets if you don’t have them already. I’ll inlude the links

sleepreviewmag.com/2015/02/...

ncbi.nlm.nih.gov/pmc/articl...

Read through and highlight the relevant parts.

Finally, try to get to see an other md as your current one is useless and too headstrong, and get there armed with info. Also have a look on the rls-uk.org site. Write down the essentials of what you want to say and take someone along that you trust and who has seem you in your distress. One thing that may help is to stress that you need a strong painkiller like an opioid, as is written in the info, only TEMPORARILY. That is, for as long as the withdrawal symptoms last. When they subside it is time to review you meds.

Take care, stay strong; you can do this. And keep writing if you feel desperate. Going through this alone is no fun.

6 likes
Reply

THANK YOU SO MUCH FROM THE BOTTOM OF MY HEART!!

I am just really having a hard time and I live alone and it is very scary right now for me. I could not survive without you all and I cannot thank you enough.

Sunshine

2 likes
Reply

You poor thing, i agree with all Lotte has said to you, And your doctor has no idea what augmentation and the withdrawals are like. You really DO need a opiate to help with it . I understand the living alone and being scared, i have been down that road a few times, when i have tried out a new med to take, and have had bad side effects in the night, no one to talk to in the middle of the night is horrible. Please keep talking to us, as many times in the day or night as you want to, someone is usually on here. We cant physically help you but we can talk to you and give you our support. Just posting on here and having people comment to you can be enough to make you feel not all alone. sending hugs.

6 likes
Reply

THANK YOU SO MUCH!! I did better today and I am praying that I have a good night...it is 8:45pm Sunday evening and I have not taken any Ropinerole today at all...my neighbor gave me 2 Tramadol 50mg that she had from a surgery and I took one at 11am and the other one at 7pm ... I took a 1mg of colonzapam at 8:30pm. Right now I am not jerking thank God!!!

❤️🙏🙏❤️ Sunshine

1 like
Reply

LotteM, I made it through today with NO ROPINEROLE!!! I don't know what tomorrow will bring or later in the night tonight but right now I am just going to do my best with "one day/hour at a time"!!!

Thank you so much and God Bless You All...I am going to try to sleep now and hope and pray I can!!

🙏🙏🙏🙏🙏

Sunshine

2 likes
Reply

Sleep well sunshine! It looks like tramadol does the trick for you. Hopefully this day and a good night will give you sufficient energy to find a doctor who is willing to work with and for you.

Reply

PS. We understand!

2 likes
Reply

Hey Sunshine458. Many of us have endured what you are experiencing with much the same distress that you expressed in your message. I am really sorry that you have to suffer like this, and that you do not have a Dr. that can provide better support. Look on the home page of RLS Foundation web site rls.org and you will find a listing of RLS Clinics and Dr.'s who treat RLS, at least in the US. I'm not sure if they provide any information outside the US. I hope you are near a Clinic. As my Dr. said, everyone is different and their RLS must be treated as an individual not a generic problem. When I was withdrawing from heavy doses of pramipexole, a dopamine agonist like ropinerole, I tried 1200 mg of gabapentin with no help. I had some oxycodon/acetaminophen pain meds, that I had not used and found that 2 would put me into a hard sleep. After visiting the Clinic, my Dr. recommended 600 mg of Horizant. This is a variation of gabapentin. I explained to him that it had not worked for me before. He insisted stating that it does not require a gradual build up in dose and, if it will help, shows results right away. This was some time, well into my withdrawal period, but as he stated, it gave me a good nights sleep, the first night.

Sunshine, I do not know if any of this, other than a good RLS Dr., will help, but it is my experience, for what it is worth.

And, do not lose hope, there is an end to the awful experience that you are enduring, once you are coming out of the withdrawal.

Best of luck to you.

7 likes
Reply

THANK YOU SO MUCH FOR YOUR INFORMATION AND SUPPORT ❤️❤️❤️❤️

Sunshine

Reply

P.S. I am in the US...I am in Arizona...I will look it up online for RLS clinic or Dr.

Reply

I have been there too Sunshine! Just weaned off of Requip a month ago and it was terrible. The only thing that got me through was some leftover Viocodin that I had. Since then I have been using Kratom herbal powder which definitely helps me sleep. I am in the US and will be flying to Fort Collins CO in April for 2 weeks to see Dr James Anderson, a Podiatrist, who has been doing nerve Decompression surgery for RLS which is 90% effective. I figured that was worth a try. If you google his name and Fort Collins CO you will be able to see his Webinar about this procedure he has done on hundreds of people with RLS. I will let everyone know how it goes after it is done.

herbal powder to relax my legs which definitely helps me sleep.

2 likes
Reply

CindyPatt, Thank you for your helpful reply. How long did it take you to wean off Requip and what mg did you start from when you began to wean off? How long did you take the Vicodin? I am going in to day #31 tomorrow!! I did not take any Requip at all today!!

I would be very interested in more information about herbal powder to relax your legs to help you sleep PLEASE!!

Best of luck with your surgery and I will be praying for you and anxiously waiting to hear the results!!

Thanks again for your reply...everyone here has been wonderful for me!! I could not do it without you all ❤️❤️❤️❤️

Sunshine

Reply

Sunshine, several people have ample experience with kratom. It may be a way to go if you can’t get tramadol or another opioid. Kratom works on the same nerve receptors and - therefore - it should NOT be taken together with opioids. And maybe it is still legal in AZ.

Reply

The highest dose I was on was 1.5 mg a day (1.0 at bedtime and 0.5 in middle of the night). I weaned off over 2 or 3 weeks by decreasing by 1/4 every few days. I take 2 teaspoons of Kratom several hours before bed now and it helps me sleep

1 like
Reply

As for the length of time it takes to go thru DAWS (dopamine withdrawal syndrome) it varies, but it is usually longer than weeks. There is a series of videos from a woman who did a video journal of her dopamine withdrawal, and she had nothing to help her thru it. Her name is Kay Redmond Jordan and she can easily be found in a search- "Kay Redmond Jordan RLS" it is enlightening and shows you how bad it can be. After 30 days I think, her doctor THEN gave her an opiate to use, and now she is doing very well. But it got so bad with her, Day 14 thru Day 20 is her worst days, she is in one of my groups. You have made it to Day 31, so it should start calming down, but there is no universal time limit on the withdrawal period with dopamine meds, and as always, it is not the same for everyone. The one thing that is universal is that withdrawal from dopamine sucks, and is compared to cocaine withdrawal. Up above some one posted a link from Sleep Review magazine, and that is the single best thing to read on withdrawals and how to lessen it. The only meds that REALLY help with that are opiates, and that is explained in Sleep review, the doctor interviewed there is an RLS researcher, expert RLS doctor, and I have know him since 1996 when I got my first computer. HE is the best! :) Dr. Mark Buchfuhrer.

1 like
Reply

I will be looking at this video. Decompression surgery is very iffy as to if it will help RLS or not. But good luck and let us know. RLS is neurological and therefore a brain disease. So, a podiatrist is not really the best kind for most people. So will be interested in what happens with you. We do know things have to expand, as in more studies on the root cause of RLS. But, I have not heard of any people getting rid of their RLS with that kind of treatment. But, someone has to make a breakthrough. :)

Reply

IF you do get a name off the RLS Foundation site ( the US one) please read the disclaimer at the bottom of that list. Some doctors listed there are only "interested in treating RLS" and may not necessarily be a doctor who knows all about RLS. That list is iffy at best. You say you are in AZ? Phoenix has some good doctors and sleep clinics. You can PM if you like, I am pretty good at finding doctors for people in the US only, after 28 years of managing RLS groups. I have a list of good RLS doctors.

Reply

I understand and although I dont have direct answers, I am trying cdb. I can let you know how that goes but it will be a few weeks before that happens. It is supposed to help control the rls without any other drugs, and I should be able to go off ropinerol after a short time. I wish I had answers for you sooner. I have prayed for you to get the answers you need.

2 likes
Reply

Thank you so much....please keep me posted how the cdb works for you and if it works please let me know more details about it!! I will try ANYTHING!!

Today is my 30 day of this pure HELL!!!

🙏🙏🙏🙏🙏

Sunshine

Reply

Good luck with that! Please do let us know. People have different experiences as with anything else, but some people are over the moon with CBD. There are different kinds , too.

Reply

I agree completely with Lotte and Billdel. Getting off The last 0.5mg of Ropinirole is literally hell on earth. You cannot do it without an opioid so find a US physician who will prescribe them.

It’s only during withdrawal and then Horizant can be taken. It’s only available in the US and it’s better than Gabapentin.

You won’t feel human until 3 weeks after last Ropinirole dose. Change doctor ASAP and find one who understands DA withdrawal.

Stay strong

5 likes
Reply

Thank you so much!! Today is day #30 for me and I took advice from here this morning and I have not taken any Ropinerole today at all...I figure I may as well stop it completely ASAP and try my best because I can't feel any worse without it at this point I don't think.

What mg of Horizant should I ask for?? I know that you can't tell me as a doctor but just kinda what is a starting point and how long do I have to wait to take it after my last Ropinerole dose?? Three weeks??

I appreciate everything you all have helped me so much with!! This is so hard by myself!!

God Bless You All 🙏🙏🙏🙏

Sunshine

1 like
Reply

I don’t know the correct dose of Horizant but you can start taking it immediately. You don’t need to wait.

I started taking Gabapentin while I was withdrawing from Ropinirole.

I also took tramadol.

It started helping about 2 weeks after I took the last dose of Ropinirole.

Stay strong- once through withdrawal that horrible all day RLS will be gone.

Another good option for you would be pregabalin (Lyrica).

This is similar to Gabapentin and Horizant but has fewer side effects & has been shown in trials to be as effective as pramipexole ( another dopamine agonist).

Wishing you strength.

1 like
Reply

Hey Sunshine. You sound better. What ever you do, please do not go back to the ropinerole, for relief. It will just make it a lot worse in the long run. I know I was SO tempted to take a pramipexole to get some relief during my withdrawal.

Tramadol is a good source of relief. I hope you can get more to help you through this. I have had great success with 1 or 2, 600 mg Horizant. I am a big guy, so you may want to start with the 300 mg. It is very expensive, but you can get a coupon for a free 30 day supply and reasonable costs, thereafter. Go on line to: horizant.com/copay?gclid=Cj... It will explain all about the discount options and about the drug. I think you can take it right away to help you withdrawal symptoms. But, that is why you need a Good RLS Dr. to help you. I didn't see a Clinic in Arizona, but there are doctors who treat RLS in Scottsdale, Tempe, Tucson, and Mesa.

Good Luck Sunshine and let us know hoe you are doing.

2 likes
Reply

Billdel, Thank you so much for your reply...you just answered the question I was going to ask about taking Ropinerole ... I did not take any Ropinerole for 28 hours yesterday and at 2:30am this morning I was jerking horrible but I was so tired and I don't have any Tramadol so I took 1/2 of 0.5mg of Ropinerole at 2:30am. My neighbor has a refill left on her prescription for Tramadol and she is willing to try to get it and give me some of hers Tramadol pills. In the meantime I am jerking and crying horrible right now at 4pm ... It's been 14 hours since I took Ropinerole at 2:30 this morning.

I am on my 31st. Day of withdrawal/augmentation today...does anyone know if I am getting closer to being better or am I a long time still to go like this??

This is horrible!!

Thank you all for being here for me.

❤️❤️❤️❤️

Sunshine

1 like
Reply

BTW...I am in Tucson Arizona and if I could find a doctor to help me I will get there!!

Reply

Sunshine, I am not an expert by a long shot, but I did endure about 3 weeks of withdrawal, of which the first 8 to 10 days were as you describe, an absolute pain in the rear end. If you are, even, only occasionally, taking some of the ropinerol or any dopamine agonist through your period of withdrawal, I think it will just drag out your agony for an even longer period. I went cold turkey without know what I was getting myself into, but I am glad, now that it is over. The affects were terrible, for what I think was a lesser length of time than if I had slowly withdrawn from it, and probably had less severe symptoms.

Hang in there. Call every Doctor you know and get some Tramadol or maybe try the karatom or marajuana, if its legal, or you can get it, to help you through this tough period.

There really is a very enjoyable spell, compared to this, at the end of the withdrawal period.

God Bless you.

Reply

Agree totally with all the excellent advice given above.

Just to add that Clonidin is very effective in helping with the lady few days of withdrawal- when you finally make the break. Also Diazepam 2mg at that time will also help keep you calm during that hellish spell.

Any doctor refusing you such medications short term should be reported for cruel and irresponsible attitude.

Read up " Nick the Turks" journey on this site for a heroic story in getting through what yogetu are experiencing.

You can and will get through this.

Cheers.

2 likes
Reply

THANK YOU SO MUCH!!!

❤️❤️❤️❤️

Sunshine

Reply

Hey sunshine, I don’t know what state you reside in, but after trying ropinirole, gabapentin, and something i can’t rememeber, me a 21 year old 6’2” male weighin 140lbs. The pills made everything worse. The next choise was my last choise which was Valium, but then my doctor recommended i try cannabis to treat the symptoms. Living in Florida, getting my cannabis card was a nightmare. It’s the only thing that has worked for me so far that does not have withdrawal symptoms.

2 likes
Reply

Thank you for your reply Giancarlo96. I am in Arizona and I think I can get a cannabis card pretty easy actually and I have access to many different facilities here to try. However being 68 years old I don't want to be "high" and not be able to function either!! What form are you taking etc?? Like I have said in previous posts "I will try ANYTHING POSSIBLE that can fix this horrible problem because I am losing all quality of life due to RLS and I am so sick and tired of being sick and tired!!

Please keep in touch and thanks again for your reply I appreciate anything that is helping anyone at this point.

Sunshine

Reply

There are different types, different ratios and strengths, have you heard of CBD, it is a nonpsychoactive oil, which can be vaporized,ingested as pills, tintures, or even food. CBD does not give you the “high” feeling. I tried it, and it didn’t work for me, but everyone is different.

You can administer cannabis either by eating,smoking, tintures, and even topical creams. Not sure about the creams, but everything else, will give you the “high” because they contain the psychoactive ingredient. But I would recommend you call a local dispensary and ask, there are so many different strains of cannabis to treat so many different things.

Best wishes from south Florida

2 likes
Reply

I know it might still be seen as taboo or looked down upon, but everything is worth a shot for a good night of sleep

1 like
Reply

ABSOLUTELY

Reply

Definitely try a low Dose of a sedating cannabis. It is illegal here in the UK but during withdrawal I used it for a week ( frankly I didn’t care at that stage if the police caught me). It really, really helped. Gave me much needed rest for a few hours.

If it’s legal where you are- go for it!

1 like
Reply

Hey Joolsg. I would be interested in your experience with it. My Dr. said CBC has been shown to help. That is the only version that is legal where I am. I tried it in electric cigarette form and got nothing from it. I am past the withdrawal, but am with you, I don't care, if it helps. I would appreciate your thoughts.

Thanks

2 likes
Reply

I got hold of some cannabis leaf but have no idea what strain it was or if it was pure ( that’s why they should legalise it so people get the right, pure strain).

I smoked it last thing at night during withdrawal and it stopped RLS and let me sleep for 2 hours which was a miracle.

Sadly, as it was clearly so strong, I developed panic attacks after a week so had to stop using.

I’ve tried the medipen cannabis oil infusion but it did nothing.

I’ve also tried cannabis oil capsules from CBD brothers and they help with sleep. I get on average an extra 1/2 hours sleep at night if I take them.

2 likes
Reply

Thanks Joolsg. That is helpful. Think I will hang in there on getting the iron infusion, eventually. Am holding my own with the Horizant for the time being. It is doing a pretty good job. Get some twitches at night, wake up , but go back to sleep fairly quickly.

Good Luck.

1 like
Reply

I went through a gruesome withdrawal too but I have got through it with the help of everyone here. I discovered arthrocann, a canabis cream that I put on my legs and it has helped enormously. Also, have you tried Kratom? there are many posts about it here - I find this works and took a small dose when I was bad and it helped me sleep and kept me calm, nothing else. I have taken it only about 5 times so far this year and I am so much better and don't take any other drugs at all now,(after 17 years on pramipexole) Just knowing I can take Kratom helps me relax and sleep. best of luck with it all, it really is so difficult to explain to anyone who hasn't gone through it but I few of these posts may help a doctor understand.

2 likes
Reply

I like your attitude Lenilatt. I too, would like to stay away from Rx if possible. Sounds like you have achieved that. I have been reading a lot on here about karatom but know nothing about it. Guess I need to Google it! How much do you take and when. Does it relieve symptoms immediately or do you need to take early, before bedtime or before symptoms start?

Thanks

Reply

yes, google it, there is a lot of info on it. I take one teaspoon which is a very low dose. I mix it with hot chocolate as it has a odd taste. It seems to work quite quickly, in about 10 minutes and sends me to sleep and/or relieves symptoms and lasts for a few hours, depending, no doubt on how tired I am. I have suffered no side effects at all except feeling calm and relaxed. If you look at all the posts on this site you will find lots of info. best of luck.

1 like
Reply

Remember to look at both sides of kratom. IT is illegal in the UK, and in about half the states in the US. The FDA is going to ban it really soon nationally, unfortunately. IT may be "all natural" but there are groups for kratom withdrawal all over the place. It is illegal in Thailand where the tree grows, and it is kind of a stimulant. But, we all have to do what we find is best for us. Just wanted to let you know that soon it is going to be illegal in a LOT of places. Sad but true. I myself have never tried it, but lots in my groups have. As usual, different things help different people. And, kratom is not actually going "med free" it may just be a "tree leaf" but it has all kinds of things you need to read about. Best not to get you initial info from web site that is selling it for obvious reasons, they will not tell you any of the negative things. Good luck! We are always here.

Reply

Lentilatt, I am very interested to hear about Kratom also....I would give ANYTHING to get off prescription drugs and all the nasty side effects and everything that goes with them .... This is such a great place to find out how other people have dealt with this horrible RLS

Thank you all so much!!

Sunshine

Reply

in case you did not see my comment, kratom has side effects, and is going to be banned in all states soon in the US. July 1st I believe. Don't read about it on sites that sell it, for obvious reasons. find neutral sites to read about it. All natural does not mean "all safe" all of the time. So just make sure you do your homework. But the FDA is making a lot of noise. Do not believe all their stuff, the stats are skewed on their web site too. :) I would look thru the posts on here, put kratom in the search box here to see others' experiences. But, everything has side effects, no matter what, prescriptions or not.

Reply

Hi Sunshine

Have you tried magnesium. I find Floradix magnesium orally before breakfast + Dead Sea magnesium shower gel, magnesium lotion, then magnesium spray before bed works wonders. I am still on 1 mg Ropinerole ( down from 1.25 mg ) at 8.30 pm.Neurologist told me to keep increasing Ropinerole up to 4 mg but I reduced it instead.

Reply

LoisTonya, Thank you for your reply. Magnesium gives me diarrhea, I have IBS too!! I have different bottles of magnesium here but I don't know which kind works for me?? I have more vitamins etc than a drug store trying everything possible to get over this nightmare!! I do have magnesium spray that I use and I sit in Epsom salts bath.

You are doing the RIGHT THING not to increase Ropinerole mg...most doctors think that is the answer and thank God we have this wonderful website with people that know better!! I have been on Ropinerole for 15+ years and I have to get off of it NOW!! The side effects are worse than you can imagine!! Sounds like you are on top of it and heading in the right direction.

Thanks again for your reply and we will all just stick together here and get through this!!

🙏🙏🙏🙏

Sunshine

1 like
Reply

I have read each and everyone of the hell they went through getting off of ropinirole but they don't say what they went through; Could you possibly give more detail of the symptoms. Mine have been bloating, gas and some stomach pain after I eat. I wonder if you had any of that. Nellgrayson

Reply

Hi Sunshine,

I know what you mean! It is pure HELL, and trying to get others to understand what it’s like is like pulling teeth that will never come out.

Here is a list of things that got me through my period of complete hell on Earth (a.k.a. Augmentation from Pramipexole):

-compression stockings: the tightness these provide helped calm my movements to an extent

-a hand-held heated massager

-pounding water directly on my skin by spending time in the hot tub at my local pool and/or using the jet spray option on my shower head at home

-«Relaxing Leg Cream» by Magnilife. I noticed you’re in the States, so you can get it at Walgreens

-Magnesium Oil

-Epsom Salts (although I see you’ve tried this)

-3 exercises in particular that can be found halfway down this website:

healthline.com/health/restl...

- Lidocain Plus Pain Relieving Liquid: a rollon liquid that is designed to numb the nerves to an extent. Although this is meant for small surface areas, I didn’t give a damn and just rolled it over both legs. It worked for me! This can also be found at a US pharmacy (I think Walgreens, but not sure since someone got this for me)

-a cooling gel like they use for sports injuries.

I hope at least one of these helps you. Here are also some things that I use to de-stress (with the last one used to wake me up):

-Dr. Hauschka’s Moor Lavender Calming Body Oil: I rub this behind my ears and on my neck whenever I’m feeling really anxious. It really helps calm me down. You can get this on Amazon.

-«Head Ease»: an aromatherapy blend of organic ingredients. I massage this onto my pulse points and it really helps calm me down!

-Lavender Oil

-Rosemary Oil

I’m glad to hear you’re getting your bloods checked soon. Remember to get the actual Ferritin level number instead of accepting normal. I think it needs to be 75+ for those with RLS, but can someone check me on that?

Please remember that you are far from being a hypochondriac!!! This syndrome is more than weird and has very weird symptoms that, when talking about them aloud with someone, might sound completely surreal. Please remember that your symptoms are very real!

Also remember that you can and will get through this! It is extremely tough (heck, I felt despaired that I would ever get through my 8-month Augmentation period), but it does pass!!

Good luck!

1 like
Reply

Jess3648, THANK YOU SO MUCH for taking your time to list all this down for me. I appreciate each and everyone of you here and you help me so much!!

Today is my 31 day and unless you have actually felt like this I don't think anyone can imagine what it's like!!

I am so depressed and I live alone and I know that people think I should be fine but they have no idea. I have just made up my mind that I am going to just concentrate on reading everything I can here and trying anything I can do to get through this. I cannot imagine feeling like this for 8-months!! OMG!!

❤️❤️❤️❤️

Sunshine

1 like
Reply

Yeah, that was a very traumatic time for me. I am sorry if I scared you with the length of time my augmentation took. Everyone has different experiences, so I hope your withdrawal will pass quickly.

You are exactly right!! No one has any idea the pure hell you are going through. Although I have a pretty good idea of what it’s like for you, it wouldn’t be fair for me to say I completely understand. I do empathize, though.

1 like
Reply

Jess, thank you so much!!

Reply

You are so welcome🙂

My inbox is always open if you want to talk.

Reply

Hi there,

It took me at least 3 weeks to come off Pramiprexole and was then put on Ropinirole which made me feel dreadful. After two weeks I could not take any more and went to the Neurologist who put me straight away onto Neupropatch and I have not looked back. Now on 3 mg and 0.5 mg of Clonazipam at night, need to watch my TRIGGERS though. Best of luck!

1 like
Reply

hi Sunshine458 I know exactly what your going through I have just weaned of repinarole took me 8wks but its still in my system it may take another 8wks but I am going to do it, I don't give a damp on how long it will take (I couldn't have done it without tramadol)but I am going to succeed & so will you. You have to get some opiates (painkillers) to help you. You will not be able to do it on your own, you must get some painkillers to help you (opiates)if your GP wont give them to you cant you just go out & buy them from your pharmacy? You will get through this, but you must have help, meaning painkillers.(opiates) I know what you are going through so hang in there. Take care X SUE

1 like
Reply

We cannot buy opiates over the counter in the USA, Connie. Is that what you are asking? I know you guys can get low dose codeine over the counter in the UK but certainly not in the US. IF that is what you were saying.

Reply

Nightdancer, I have pm with Connie and explained to her that she cannot send me any pills of any kind in the mail. She didn't understand that I am in the US etc..

I appreciate her concern and she has a big heart and God Bless Connie for her kindness. Don't worry she is not going to try to send anything in the mail...I would never do anything to put her in that kind of position!!

Thank you so much!!

Reply

HI, Sunshine, you should NEVER be ashamed or embarrassed. Obviously, that class of meds is not for you. Compulsive behavior such as gambling or shopping can happen, and I know lots of people who have been thru that, so you are not alone.

Reply

Hi Sunshine, it is awful to hear of your misery and to think of you going through this on your own. It is very hard to withdraw from a dopamine agonist such as ropinerole but, as many on here have shown, it is completely possible and in due course you will be passing on your words of comfort to some other poor soul who has to endure this horrendous experience.

I just wanted to say that you should really try to move towards eliminating the ropinerole and not be tempted to return to it for temporary relief. As long as you keep adding it back into the mix, you will prolong the misery of the withdrawal period. Use something else - either tramadol or kratom (NB DO NOT TAKE THESE TOGETHER - Kratom should not be taken with another opiate). I would second what others have said that it is a good idea to start taking Horizant. Even if it is not completely successful straight away it can settle in after a week or two and provide quite considerable relief. Horizant can be taken with tramadol or kratom. I wish you strength, Sunshine, and send virtual hugs and support.

3 likes
Reply

Hi Sunshine 😊 I understand you I have felt the same way. It’s horrible what you are going through. I have tried myself to stop this medicine for years I can’t so I just have cut back to 1milligram of extended release Pramipexole and that helps me. I use to take 2 milligrams. Everyone can say try Emson salts rub this stuff on you and everything else but really that doesn’t do anything I know I have tried. The feelings you get are so bad no one should go through that. We need strong pain relievers to get off of this medicine. Can’t just cut back doesn’t work unless we suffer. Try to find someone that will give you pain relief medicine. Here’s what I feel the Drs that put us on this medicine should help us get off of it there is no excuse for it!! Sorry I get mad about it!! I would love to get off this medicine I need help myself if you find something that helps I’m all in to learn

2 likes
Reply

Artsy, thank you for your reply...I am at my wits end!! Something has to help me soon because I cannot live like this and I don't know what to do next??

I am ready to try anything ???

Keep in touch and I will do the same

Reply

does weaning off ropinrole cause physical symptoms other than worsening of rls

Reply

It will give you days or weeks of the worst RLS ever, and no sleep at all.

But when you come out the other side you should improve, as you will be back to baseline.

Try to get the assistance of methadone or other opioid to help you.

Reply

Hi Sunshine

How are you doing now? Have you managed to access cannabis, or kratom, or an opioid like methadone? Or all of the above?

I am at the stage where I keep the whole lot to hand in case of falling off a cliff.

It is mostly illegal, but bad laws should be broken. One of your presidents said so.

What are they going to do?

Send a big gaggle of feisty old ladies to jail? I think not.

That your doctor should refuse to assist really shocks me.

I hope you have found another, one who is capable of reading all the things that many of us have already read.

It is not as though the information is hard to find, just an 'Enter' away.

Bless.

Reply

You may also like...