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

59 Replies

oldest • newest

LotteM

2 months ago

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.

Billdel

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.

CindyPatt

in reply to Sunshine458

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.

nightdancer

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.

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.

Sunshine458

in reply to Billdel

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, 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.

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.

in reply to LoisTonya

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!!

🙏🙏🙏🙏

Jess3648

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!

involuntarydancer

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.

Artsy

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

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